My Treatment Entries
My Treatment Activity
09:58:33 pm, Categories: Treatments, 91 words
I've put this in Background, and in Treatments, as it's a great link.
LLS created this excellent reference item on MCL, with a great note on treatment - "There has been noteworthy progress in the treatment of
Thanks to all of the doctors and nurses researching and trying, for all of the patients undergoing clinical trials, for the caregivers that keep us going, and for the support, thoughts, hopes and prayers of friends and family.
09:35:53 pm, Categories: Treatments, 173 words
Hackensack University Seminar on Cell Therapy and Interventional Immunology
My oncologist, Dr Goy, is hosting a seminar at Hackensack University Medical Center, on Cell Therapy and Interventional Immunology.
The summary from the site is:
There is a need to bring clinicians and scientists together to collaboratively discuss innovative translational research programs and controversial management and treatments to improve efficacies in hematological/solid malignancies. This conference is designed for hematologists, oncologists, physicians, scientists, and medical professionals involved in cancer research, diagnosis and treatment.
While this is clearly not a layman's seminar, I encourage anyone that's reading this, that has an oncologist, or knows of a research scientist, etc working in this space, to attend, as these are the targeted treatments that we need to treat, and cure cancers.
08:40:27 pm, Categories: Treatments, 234 words
5/20/13 Update - All is well (7+ year remission)
We (Chris and I) visited Dr. Goy today, and all is well!
We had the reports from my recent CT scan, so we questioned sites that remained unchanged/unremarkable, making sure we understood what everything meant. I also had a colonoscopy and endoscopy recently, as MCL tends to invade the gut, and i hadn't had a scan since 2007 - those were clear, and Dr. Goy was happy, sending me on my way for another year. But not before we talked about current treatment protocols, and the challenges for patients, as there still isn't one standard treatment. The protocol I received was R HyperCVAD, and has been proven to be quite effective, especially in aggressive forms of the cancer.
I have friends that I've met through this journey that have been treated, and have relapsed, and are seeking new treatment options, including Stem Cell Transplants, which, while very challenging, have amazing results. Several of these friends have already taken clinical trial drugs, and for that, I'm ever so thankful and in awe. It's the drugs that are currently in clinical trials that we hope will bring a cure to many of these diseases.
Many thanks for all the thoughts, prayers and support from friends and family. Please keep it up, it's surely working; and please keep in your thoughts and prayers those who have passed, and those who continue to fight.
Have a great summer!
06:40:46 am, Categories: Treatments, 1323 words
A Conversation About Mantle Cell Lymphoma with Dr. Andre Goy
Would you describe mantle cell lymphoma?
Mantle cell lymphoma (MCL), which was only officially designated as a separate entity in 1994, is not a common subtype of non-Hodgkin lymphoma (NHL); it represents only about six percent of NHL. MCL often has characteristics of both indolent and aggressive forms of NHL. MCL can have a rather indolent course during which most patients have limited symptoms; however, most patients relapse and become chemoresistant over time. Such challenges have led to a lot a great deal of innovation over the last twenty years resulting in significant improvement in outcomes.
Patients with MCL typically present with lymph node enlargement, an enlarged spleen, elevated white blood cell counts, and almost all patients have gastrointestinal and bone marrow involvement. However, only one-third of the patients at diagnosis have lymphoma-related symptoms (i.e., fevers and night sweats, weight loss). The diagnosis of MCL is made through pathology testing which shows characteristic morphology, immunophenotype (i.e., cells expressing B-cell mature markers CD19, CD20, and co-expressing a T-cell marker CD5 while MCL cells are found to be CD10 and CD23-negative) and typically requires evidence of overexpression of cyclin D1 or t(11;14) gene translocation.
How is MCL typically treated?
The treatment of MCL has evolved dramatically over the last two decades. Therapy is selected based on whether patients are eligible for intensive therapy based on their clinical presentation and age, given that the median age of diagnosis is the mid to late sixties.
Patients who are eligible for intensive strategies can receive either classic Hyper-CVAD (cyclophosphamide, vincristine, doxorubicin, and dexamethasone) + rituximab (Rituxan) alternating with cytarabine and methotrexate or induction therapy followed by autologous stem cell transplants as consolidation therapy. This approach has led to a dramatic improvement of median progression-free survival (PFS) in excess of five years versus 18 to 24 months with standard R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine and prednisolone).
For patients who are older or have other conditions that would prevent dose-intensive strategies, there is a far more effective therapy than R-CHOP alone. Recent data looking at maintenance rituximab post-induction with R-CHOP show a clear improvement over R-CHOP alone, setting a new standard. In addition bendamustine (Treando) + rituximab which was compared to R-CHOP as frontline treatment as part of the Study Group Indolent Lymphomas (StiL) trial has shown significant improvement in PFS, although there was no difference in overall survival. The reported toxicity profile also makes it an appealing option in MCL. The difference in PFS was not observed in patients with follicular lymphoma in the same trial.
There are also a number of novel therapies being developed in the relapsed/refractory setting. These agents are currently being investigated for integration in frontline treatment regimens, in combination with chemotherapy, or as maintenance.
What are the main areas of research in MCL?
Though the results for frontline have clearly improved in MCL, most patients still relapse and become chemoresistant over time. There are two main topics for MCL research: (1) a number of new biological agents are rapidly changing the horizon for MCL treatment, especially with this disease which patients typically respond poorly with chemotherapy, and (2) a better understanding of the biology of MCL, especially a growing awareness of the impressive heterogeneity among patients, which might help stratify patients better for treatment in the future.
Regarding novel therapies, bortezomib (Velcade) became the first U.S. Food and Drug Administration-approved drug ever in relapsed/refractory MCL and is currently being tested as part of induction strategies with chemoimmunotherapy regimens. In the European Union (EU), temsirolimus (Torisel) is the only drug approved in relapsed/refractory MCL. Recently, a number of very exciting compounds have emerged in MCL, such as lenalidomide (Revlimid) and ibrutinib. In a study of patients who were previously treated (median of four prior therapies, range two-ten), treatment with lenalidomide resulted in a response rate of 29 percent with durable benefit shown by a median duration of response in excess of sixteen months, which is really impressive in that setting.
Ibrutinib, a BTK inhibitor that targets the B-cell receptor signaling pathway, has shown response rates of 60 percent to 70 percent in patients with MCL, with a complete response rate of 20 percent, a rate that appears to increase over time. Lenalidomide and ibrutinib, both oral compounds, have very easy toxicity profiles and are good candidates for integration in frontline treatment regimens.
Regarding the progress made in understanding the biology of MCL, our goal is to identify better predictive markers of MCL. There are a number of prognostic factors that have been reported in MCL that can help physicians to some extent predict the outcome among patients. Yet, none of these factors help physicians make a decision for an individual patient. Mounting evidence suggests a great heterogeneity among MCL patients (with similar clinical features) as illustrated by gene expression profiling studies (proliferation signature) and a number of other technological approaches. Practically, there are 5 percent to 10 percent of patients with MCL who have a very low-grade indolent course; they have high white blood cell counts, an enlarged spleen, and few or no enlarged lymph nodes. These patients are much more clinically and genetically stable (ie, they have much fewer secondary abnormalities) than patients with more aggressive disease. Patients with low-grade indolent disease are generally monitored and treated differently than patients with more aggressive MCL and are likely not enrolled in standard clinical trials. Patients with aggressive, or “classic MCL” are usually treated as intensively as possible to achieve a deep response, which translates into a better outcome. Achieving a complete remission (CR), and even better, a molecular CR appears to be critical, and this endpoint is being investigated in upcoming EU trials.
Please discuss the importance of clinical trials, and if are there any specific trials you wish to address?
The great improvement of outcomes in MCL over the past twenty years is a great example of the impact of clinical trials. Because MCL is such a challenging disease to treat, both physicians and the medical community at large, as well as patients, have been more willing to try novel options, which is why we have made so much progress in MCL. With the number of exciting options and novel therapies, it is becoming even more critical for physicians to encourage patients to participate in clinical trials. Current trials are investigating the use of novel agents either in combination or as maintenance post-conventional therapies to reduce the risk of relapse and for continued improvement our patients’ outcomes.
What advice would you give to a newly diagnosed patient?
Most newly diagnosed patients do not have a lot of symptoms, so it is really challenging for a patient to accept the idea that they need very intensive therapy. It is important for patients to look at all the treatment options including intense strategies that clearly lead to deeper responses which will likely translate into longer benefit. We are also developing non-chemotherapy approaches in older patients with more indolent MCL.
How are you involved with the Lymphoma Research Foundation and why would you recommend a patient become involved with the organization?
I am part of the Lymphoma Research Foundation’s Scientific Advisory Board and Mantle Cell Lymphoma Research Consortium. We have annual meetings where we discuss ongoing research and developing projects. This usually leads to a synopsis of the state-of-the art research and management for MCL that is published to give more information to patients. MCL is a disease for which there is a clear lack of consensus on treatment, and because it is such a heterogeneous and uncommon disease, it is hard for patients to really navigate their way once they are diagnosed. It is important for patients to have an objective synopsis of the changing landscape of MCL and how much progress has been made with regard to treatment.
Updated February 20, 2013
10:56:25 pm, Categories: Treatments, 242 words
5/18/12 - Update - All is well (6+ year remission)
It's awesome to post that... and to look and see the last post was over a year ago.
We saw Dr. Goy today - and Chris got to see the new cancer center for HUMED - the John Theurer Cancer Center - it's really amazing. We also got to see Coleen, Mary, and Maureen, and it was so good to see them and catch up. Again, they were all such an important part of my/our cancer journey, so helpful, that it's tremendous to see them.
We're looking forward to the Life and Liberty Celebration that HUMED/JTCC conduct each September, and this year we should have both kids with us (barring conflicting schedules that have prevented them both from coming in the past).
One of the most amazing things to hear is Dr. Goy's dictation into the recorder. The man speaks faster than anyone I know, and with a fairly heavy French accent, all the while moving his feet. However, it's also where i heard him say 2 years until the next exam - at which time he looked over at me and winked. We discussed, and i said i'd miss seeing everyone for 2 years, so lets keep it at 1!
Thanks for visiting, and thoughts and prayers to all who are either battling cancer, or the caregivers, families, and friends - you've all been amazing supportive, and we can't thank you enough.
PS - just read my reports - so nice to see 'unremarkable' and 'unchanged' throughout!
11:12:36 pm, Categories: Treatments, 590 words
5/13/11 - Update - All is well
It's been a while since posting, and for those that monitor - thanks for looking, and for those that have found this site looking for info, please contact me if you have any questions on the site/contents, I'd be very happy to offer any insight/thoughts I have.
All is well!
I'm happy to say so for me, and do so realizing that not all is well for everyone (thoughts and prayers to all affected). My scans were good, I had a great meeting with Dr. Goy and his staff, during Nurses Appreciation Week no less. To give testament to the kind of Doctor Dr. Goy is, as I arrived at the hospital, there was a delivery of at least 100 beautiful hanging baskets of flowers, that Dr. Goy had ordered for the nurses. I ran into him as I entered the new hospital, as he was looking over the flowers to make sure they were good. One of the nurses I met had commented that he was one of the only doctors to acknowledge Nurses Week in such a manner. (If you've read my blog at all, you know that the nurses make ALL the difference during treatment).
The visit was good, brief but good. "Your scans are clear" was the statement early on; then there's the basic questions, laying of hands to check for lymph nodes, and then the dialog about what's happening in the space of MCL, with other patients, etc. Goy's so very personable, invested, etc. He's recently been named Chairman and Director of the Cancer Center at HUMC, which is awesome. More hats to wear for him, but so long as he can do it, great for me and many others.
Amazing ironic story, one of our best family friends, has an uncle, that's a tailor in town, that has the exact same cancer that I did. It was at a social function that she told me that her uncle was being treated in Hackensack, by a French doctor named Gu..... (phonetically), and I said "Goy?!", sure enough... Jerry (cancer patient) and I talked at some point on the phone, and it was amazing - same disease, same protocol, but he's about twice my age going through it - and he's taking it like a champ. I had the pleasure of seeing him at our friend's daughter's communion recently, and he looked awesome. He's going into round 6 of R-Hyper CVAD, and surely that will kick him a bit, but he's done well, and I'm sure he'll come out with flying colors. He too has an amazing support system - which is HUGE. What's really neat is some of the nurses are still there, and he has one of them somewhat regularly.
Also, we (my immediate family, and my Mother) walked at the Mercer County Park Lymphomathon, organized by the Lymphoma Research Foundation. It was a great sight, they provided yellow shirts to survivors, and white ones to all other walkers. Great attendance, a beautiful day, and an overall excellent event. Many thanks to those that donated - it's wonderful to have such good friends.
I've rambled on, but the short of it is, healthy, over 5 years out, and incredibly grateful. Thanks, and thoughts and prayers to all.
PS - I heard Jim and Steve cell-mates from HUMC are doing well, Cory (cell-mate from Chicago) seems to be doing quite well, Nurses Gabby and Mary from HUMC are now engaged (awesome - both are amazing people); so happy to see Coleen, Alex, Hillary, and Jesse during my visit to Dr. Goy.
01:55:15 pm, Categories: Treatments, 467 words
2/22/10 - Semi-Annual Update - All is well
February 2010 Semi-Annual Update - Unremarkable....
All is well - scans were unremarkable/unchanged/etc... The doc was pleased (as were we).
I had a CT scan on Friday (2/19/10), but no PET scan this time. I figured insurance would start to question/push-back on the PET scan, as they're quite expensive, and as I'm 4 years out from treatment, there's a point where they'd want to have something evidence itself in a dr visit, or the CT scan. Really can't argue with that... So, CT scans they were, with contrast, and had pre-med of 3x50mg Prednisone, and took 3x25mg benadryl. The scans went uneventful - quite a bit faster than having the CT and PET to do.
The doctor visit involved the usual wait (north of an hour), but I got to see Mary and Alex (both nurses that used to be on the Chemo floor, and are now in Dr. Goy's staff). Coleen and Dr. Goy are doing well, and it was great to catch up. Goy's been busy, but still does 2 days a week seeing patient appointments, and of course makes rounds, etc. He's Deputy Director of the Cancer Center, and Chief of Lymphoma, and a big advocate of administrative resources still maintaining a hand's on approach.
I'm still going for 6 month checkups - which is good, and I'll go back in September, after all of the fun of summer!
I talked to Jim (cell-mate), and he's doing well - another clean visit, and we're of course thrilled to hear. Steven's doing well, and I need to sync-up with him.
My firm has an annual appeal where you can donate funds to various charities (comes out of your paycheck, and some matching of funds takes place), and the Hackensack University Medical Center is one of the choices, so I picked that, specifying the Cancer Center. I sent a note to some colleagues at work, nothing that if they didn't have any charity choices of their own, that they consider this one when making their election. I know most everyone has their own issues/challenges to work with, but in the event they were looking for something to contribute to (outside of the generic firm's choice - a good charity of course), they consider this one. I raise this issue on the blog, as I'd (1) encourage readers of this to do the same if they don't have any specific choices in mind, or (2) you may want to encourage others to donate to whatever facility you attended. (Seems it's when you were first starting to work that you didn't have as many issues, or compare as many pains with friends/colleagues, that you simply chose the generic charity - years later, there seems to be an abundance of worthwhile choices that have a personal attachment!)
Many thanks for looking, best wishes to all!
09:33:06 pm, Categories: Treatments, 427 words
August 2009 Semi-Annual Update - Unremarkable
Again - 'unremarkable' is one of the best things to see on a pet/ct report - and i had a bunch of them ('unremarkable's).
I had the scans done on Friday, 8/17/09, and I got a copy faxed to me last week - allowing me to review them before my appointment with Dr. Goy today. Again - this is a key thing to do, as you can question the report when meeting the the doc. On mine, I was happy not to have to question anything. (As an aside, I have to prep w/Prednisone and Benadryl to supress an allergic reaction to the dye that I developed - seems to work well.)
I'm feeling great, still need to lose weight, and my buddy Andy is on me to get cycling again (sage advice). Still, spending time with the family is more fun than being out on the bike for a couple of hours - but then, those that do it say they do it so they can spend more time with the family in the long run...
I got to see Dr. Goy - he looked great, same spirit as ever. His father is apparently as energetic as he is, and at 80 is patenting devices that help with wood splitting for some renewable energy source device he has. Amazing... must be in the genes... Coleen, Mary, Hillary - got to see them all today, and very happy to - great people all of them.
Dr. Goy noted that at 4 years out (i'm 3.5 now), he'd go to an annual checkup. I've discussed this with another buddy of mine, whose wife had a cancer, and his logic is - why would you want to delay identifying something if it came back? The inconvenience of an scan and appointment isn't too much to deal with, versus the other downside. I think I'd prefer to stay at 6 month intervals. We'll see...
Asked about Steven, and he's doing well. Jim's going in shortly I believe, and I'll send a note out to Cory to check in on him. The hospital (Hackensack) is sponsoring an event at Ellis Island on 9/13/09 for Cancer Survivors (Goy said he didn't like that work, and neither do I really), and I think we'll be attending. I'll check with Steve and Jim - would be good to catch up....
Thanks to everyone for checking in, summer has been great - we did vacations to LBI and Boston/Cape Cod, as well as a Sand Castle day at Belmar that was pretty neat. The family is doing great!
Enjoy the rest of summer, Happy Labor Day, and thanks again!
10:28:03 pm, Categories: Treatments, 304 words
A great post - copied from a friend
I'm cutting this from a friend's site, but I was amazed as I read it. So much of it rang true for me, that I wanted to post it. He had the same cancer that I did, and went through a similar treatment at HUMED, under Dr. Goy's care. He had more complications than I did, but went through it like a champ. Here's part of the post:
"Again, when I look back at what went on in 2008, it was easier for me to experience those challenges, than some of the challenges that I face today. I never felt as stressed back then as I do sometimes today- even though my life was on the line, and I was in the emergency room 6 or 7 times in 12 months. I know so many of you can relate.
I say these things, knowing that some of my friends are without jobs right now due to the economy. I can say these things, knowing that despite the stress, I am blessed and successful and grateful for my job. But I just am puzzled by the variance or dichotomy.
I go through each day, grateful for my family, my friends, my faith, my job, my challenges that teach me a lesson in patience, persistence, gratitude, and the desire to continue.
I thank God each day. I pray for forgiveness for my weakness, thankful for my gifts, and patience to accept the challenges that we all face each day.
I know that the gifts I have are more than the reasons for the strength I have to face each day with a smile."
I could comment on each line, but I'll spare you that; rather note that Jim, the author, captured some amazing sentiments, and all hold true for me as well.
Thanks Jim - keep up the good work.
10:53:59 pm, Categories: Treatments, 160 words
February 2009 Semi-Annual Update
Another clean bill of health!
I had my PET/CT scans on Fri, 2/20/09, and the follow-up meeting was with Dr. Goy's associate, Dr. Feldman.
I had the normal PET/CT scans conducted the week before (complete with pre-medicating with Prednisone and Benadyl, as I have a reaction to the contrast dye). The scans looked good, again 'unremarkable' is a great term to see! Guidance to those going through this - get a copy of your scans so you can read them as well, and so you have a copy. I keep a paper copy, and scan them to the PC so I have soft copies of all records, and can package them up if needed (to be sent to someone, print them without photocopying all of the records I have - a rather large binder at this point). CBC's look good as well.
All else is well, feel great, family's well, got in some skiing, and enjoying life!
Best to all!
10:46:53 pm, Categories: Treatments, 575 words
September 2008 Semi-Annual Update
Good news again - clean bill of health!!
I had my scans done about 2 weeks ago, and got copies of the results as soon as they had them - a few days later. It's important to get the reports for yourself, as it's (1) good to have your own history, and (2) it's good to review them before you see the doctor.
The scans were good, so I felt good there, but it always seems there's some term or something on the scans that you don't understand, so it's good to have it highlighted prior to your visit, and ask the question - rather than see it after the visit, and have to ask the follow-up question. Most of the things end up being sinus congestion, etc. Again, a clean bill of health!
Chris and I went up to HUMed for a 9:50am appointment, and ultimately saw Dr. Goy around 1pm. Like a good restaraunt, you don't want it to be empty, but it can be frustrating at times. I do take solice in the fact that I know when I had fevers, etc, he would make time for me, and I know there were Saturdays when he'd make rounds seeing 70 patients, and then do add'l work. It's a job I couldn't imagine having, and am thankful there are doctors like Goy that dedicate themselves to the cause.
It was good to see Dr. Goy, Coleen, Noel, and Jesse, with the added bonus of seeing Alex, Mary, Hillary, and Maureen (from a distance) - the latter group of four were all phenominal nurses on 5PE where I got treatment. As much as I'm happy to see them at the clinic where Dr. Goy is, I know the patients are missing some of the best nurses there are - and I've expressed previously just how important the nurses are to chemo care. Regardless, I'm thrilled they're still with Dr. Goy and Hackensack.
Dr. Goy was as energetic and busy as always. He's been seeing over 100 MCL patients, from all over the world. This is key to understanding the disease, and getting more treatment options for it. We had to wait hours to see him, but you know when you do, you have all of his attention. He sits back and talks with you about your life, what's happening in the field, etc. He's got a great presense.
It's another 6 months before a visit, and I'm of course grateful for that.
Many thanks for all the wishes, prayers, and inquiries. I asked Goy and Coleen about Stephen, and they said he's doing well. I'll mail him shortly to get an update in person. I'll also mail Cory to see how he'd doing. James, another 'cell mate' has recently completed 6 rounds of treatment - including a study drug (velcade), and is doing well. He's had his battles, but he came through with flying colors (some black, some blue!).
On the personal front (like the above wasn't), it's been a great summer, with lots of good family time on the weekends, some good vacation getaways, and a great appreciation of friends and family.
Thoughs and prayers to all going throug this, including of course caregivers and families. A request for thoughts and prayers to friends of ours that have a baby in neo-natal due to a premature birth, as well as a very good friend and his family whose son recently passed away.
Again, many thanks for checking in, and we wish everyone well!
John and Chris
06:48:14 pm, Categories: Treatments, 356 words
February 2008 Quarterly Update
Good news, clean bill of health, and the next checkup is 6 months out!
Thanks for all the kind wishes, thoughts, and prayers - and for checking in, we really appreciate it.
I found out that I'm now allergic to the contrast dye they use in the CAT scan. That means next time I have to pre-medicate with Prednison and Benadryl (prescription), to ward off the effects. I got itchy (lips, face), and had a feeling of asthma a bit; nothing too bad, but they monitored me and ran a saline IV and made me drink lots of water.
I also found out I have some early and minor cataracts. It's a possible side effect of prednisone, and my eye doctor noticed is when checking my eyes. From chemocare.com )http://www.chemocare.com/bio/prednisone.asp):
It was great to see Dr. Goy, he's doing well, energetic as ever. He, and his nurse practitioner, Noel, said I need to get back on the exercies routine. My buddy Andy has been getting on me a bit as well, saying that it was my being in good shape when all this started, that really helped me get through it well, so I owe it to myself, and family to get back to a good condition. I'll be spending some more time on the bike (in the basement now), trying to shed some pounds, and get the cardio back!
I've mailed with Steve and Cory - and they're doing great, remission, doing well. Jim is going to start treatment soon, he had a little scare with acute diverticulitis, and a temporary colonostomy (my Dad had one too - colonostomy); no doubt he'll do well.
That's it for now, feeling great, working hard, and enjoying friends and family!
All the best,
10:26:37 am, Categories: Treatments, 191 words
October 2007 Quarterly Update
I had my quarterly PET/CT scans, along with the review by Dr. Goy's office - all good!
Dr. Goy was traveling, so one of his associates reveiwed me. I thought this would be good, to get a 'second opinion' kind of thing; a review from someone not as familiar with my case. However, I do like having Dr. Goy review my case, and will hold out for him next time. He knows the whole story, and it's good to have that history.
The scans were clean, and the review good. After the next quarterly, they can move to semi-annually.
I'm going for a colonoscopy/endoscopy as part of an annual scan, and will have those results shortly. A number of friends are being scheduled for them now - as they're either 50, or nearing it, and my advice is constant - it's no big deal (sedation is a good thing). The fasting is the wosrt part!
The family's been doing well, just returned from a vacation to Florida to see some family, as well as Mickey and Universal. Family and work are good, and we're just doing our thing...
Thanks for checking in,
09:24:10 pm, Categories: Treatments, 132 words
July 2007 Quarterly Update - good stuff!
I had my PET/CT scans done yesterday, and met with Dr. Goy today.
A good checkup by the good doctor, and I was on my way. Not much to report, but that's a good thing!
I feel great, am working hard, enjoying summer, looking forward to some vacation, and life and the family are great. Thanks to all that read this, and for your support.
Again, best wishes to everyone involved with this, we hear Stephen's doing well, Jim's going to see Dr. Goy on Monday, and seems to be status quo, and I'm hoping everyone else is doing great.
Have a great summer!
PS. Alex has been busy trying to clean up the thousands of spam comment entries that have appeared. We'll see if we can keep it clean!
10:31:41 pm, Categories: Treatments, 166 words
April 2007 Quarterly Update - good news!
I had my quarterly visit with Dr. Goy, after getting the quarterly PET/CT's done. All is well!
I've updated my blood counts on the background tab, and they're staying steady. Everything looks good, and it was great to see Dr. Goy and everyone there. I even stopped on 5 PE (where I received chemo and excellent treatment), and got to see Mary, the head nurse, and a wonderful person. I got to catch up with her, and hear about the recent goings on. The nurses on an oncology floor are amazing, and I'm very happy to hear they're doing well, it can't be an easy job.
That's it for me, I'm busy with work and family, and still need to drop some of this weight! need more bike riding...
all my best to everyone checking in, and of course to those battling the disease. Steve, Jim, James, Corey, etc - keep up the good work guys, sounds like everyone's doing well.
All our best,
01:11:28 pm, Categories: Treatments, 256 words
Quarterly Checkup, February 2007
Good meeting with Dr. Goy.
My Father accompanied on the trip, as Chris had some other stuff to tend to, and it's good to get out with Dad! Thanks for the company Dad! (BTW, Dad turned 70 this past week!)
The feedback was good - no changes since the last visit. Things like that are good. You have no idea (or maybe you do), how good it is to be 'unremarkable' - they're great words to see on your scans. That, and 'physiological' uptake is a good thing.
Blood work came back good, it's posted on this site as well.
Had a great chat with Dr. Goy. He's seeing the most patients with MCL nationwide I believe, and Hackensack University Medical Center is treating a tremendous number of cancer patients - rivling MDA I believe. Not something you like to hear on one side, but they're doing good work. He's getting more help, and can hopefully get more involved in research, and finding a cure/cures.
I asked about Steve, Jim, and James - all patients of Dr. Goy's, and friends of ours - all are doing well. Much hope for continued good news.
It's ironic, it's great to see the group up there - Coleen, Jessie, Alex, etc - but - I do like keeping my distance! (Also got to hear about some of the 5PE nurses, and all are well.)
Also - a buddy is doing an amazing job chronicalling his battle with Cancer, having just undergone a SCT. His blog is: http://1speeder.com/tiki/tiki-view_blog.php?blogId=1
11:46:05 am, Categories: Treatments, 80 words
Happy Holidays to all!
It's been the normal (which is good!) Holiday fun here. Running around, seeing family and friends, lots of good stuff. Back for a little work before the New Years weekend.
I feel great (but then, always did!). I REALLY need to drop weight now! The holidays are cruel for that...
ok, back to work, but again, all the best, Merry Christmas, Happy Holidays, and the best of Health, Happiness, and Prosperity in the New Year!
05:56:27 am, Categories: Treatments, 45 words
October Update Part 2
Quick post - all went well with my recent Dr. Goy visit and assosicated PET/CT. I'll get into more detail, but pressed for time right now. But Aunt Joan gave me concerned grief (for which I'm appreciattive) for my lack of posting following the checkup.
07:43:55 pm, Categories: Treatments, 487 words
I was scheduled for a PET/CT today (10/20/06), but the machine was broken, so they were kind and told me of the status this am. There was a chance it would be fixed for my 2pm appointment, but call later; it wasn't done, so we rescheduled for next Thursday at 7am.
I'm meeting with Dr. Goy on next Friday, and he of course gets the results, interprets, and uses that as the major input to the follow-up exam (so there will be a rush on reading those slides!).
Since last I posted, all has been well. The family is doing well, I'm going about my normal life - work is crazy, but I do try to keep a bit of perspective on that. i.e. - i will think 3x before missing out on some family event for work. I was pretty good with that before, but even more so now.
I had a bump on the back of my leg at the last Dr. Goy visit, and since then I've had it removed - a sebacious cyst (sp?) was the verdict. Benign - a wonderful thing, negative tests - negative is good... Heck, I was even happy to hear the doc say 'it's an adult pimple'. I'll take that.
I still haven't managed to take the extra weight off - but really want to. I worked too hard last time to have this stay! I went on a 50 mile semi-hilly bike ride about 2 weeks ago - the Twin Lights ride that originates in the Highlands, NJ. Nice ride, and we did a 17.2 mph pace. It's better than the pace I did it at 2 years ago, when I was about 30lbs lighter - and no, it's not 30lbs of muscle! I did it with my good friend Andy - with whom I used to ride regularly, but he's at a different employer, so we can't get out for our weekly 32 mile ride - but we did squeze one in about a month ago - after a work golf outing that we were both at. 18 holes of golf, beers, food, and then 32 miles of riding - and again - a better performance than i had ever posted before. Too many variables to determine the cause, or if cancer played into it at all before. Bottom line, it was a great ride.
All else seems well, I reached out to a few 'cancer' friends a while back, and all are doing well. Actually - I need to catch up with Steve to see how he's doing. We always ask about him when visiting Dr. Goy.
A friend of a friend is getting ready for a stem cell transplant, after having 2 relapses. He's an animal. He works out like you wouldn't believe - even when doing chemo. His site is: http://1speeder.com/tiki/tiki-view_blog.php?blogId=1
That's it for now, all the best to everyone following this, and anyone undergoing it...
09:23:00 am, Categories: Treatments, 653 words
We had our quarterly checkup with Dr. Goy yesterday - all is well. I had the PET/CT done on Tuesday, and the results were available for Dr. Goy on Wednesday.
Dr. Goy is going out of the country for a couple of weeks, so he wanted to wrap this up before going away, and I had a pea sized lump on the back of my leg, just above where your knee bends, that we were concerned with. It was blue-ish in color, and about the size of a pea. At first I thought it was a mosquito bite when I felt it, but after it didn't go away, and didn't itch, I checked it out and told Chris. She relayed the info to Coleen, and she got us in about a week earlier than we were previously scheduled for, and with Dr. Goy, etc.
Dr. Goy checked it out, and didn't feel that it was anything (and they had done scans of my leg the prior day), but he had me go to the hospital to have a sample taken from it. There, a doctor used a very small needle ("smaller than the ones they take blood from you with" said the assistant) to remove some fluid from the site, to make slides, etc. There was no need to numb the site, as the needles to numb would have been as, if not more, painful than the needle to draw a sample. The doctor took the sample, and afterwards, there was very little left of the lump! His suspicion was that it was just a bruise that healed improperly and blood pooled there - but the test would determine things definitively.
Doctor Goy called us on the way home from the appointment to tell us that it was nothing and we were good for another 3 months! Great news indeed.
We also stopped at the hospital for a book signing by Sharon Parker, whom wrote a book on her battle with cancer (she had 2 different cancers at once). Dr. Goy wrote the forward to the book, as he was her physician at MDA. She's followed him to Hackensack, and she said she'd follow him anywhere in the world. She's an incredibly energetic and wonderful woman; she had pictures displayed of her with Howie Mandell, Gov Potacki, Tom Jones, and countless other celebs, as her family used to own a resort in the Catskills. I'll read the book and post the name of it later, or you can search Amazon on her name. She's doing a book tour currently, and wanted to know if we would host something in our home around this. More to follow...
Many thanks to everyone for the good wishes, prayers, and thoughts as we come up to these checkups. We really appreciate it - more than we can possibly express.
Happy Summer everyone!
Couple of comments:
I'm impressed at this level of detail and care, because I know there are other doctors out there that don't do this.
10:35:33 pm, Categories: Treatments, 119 words
It's been a while since I've posted, and that's a good thing!
Doing the normal stuff, feeling fine. Summer's here (technically), and the calendar is filled with the normal events, leaving only a weekend or two open, lots of good stuff.
I need to check in with some of my old 'cell mates' (a phrase that was coined on one of the list servers I subscribe to. I've not spoken/mailed with Steve or others, but hope they're doing well. I see notes from Corey (he's the same age as me, out in Chicago - same treatment, etc), and he seems to be doing well.
That's it for now, hope everyone is doing well!
Best Regards, enjoy your summer!
03:02:54 pm, Categories: Treatments, 64 words
Quarterly follow-up #1
Met with Dr. Goy today. Basic exam with him, and he had previously communicated that the results of the PET/CT were good. All feels good, he's happy, as are we!
PET/CT scheduled for 3 months from now, with another follow up. We can stop the blood tests, as the numbers are coming back (HGB, etc.), and we'll check that with the next review
05:35:07 pm, Categories: Treatments, 132 words
Had a PET/CT scan done today as part of my quarterly reviews. I'll meet with Dr. Goy next Friday to review the results.
I feel great, and look forward to good news!
All else is well, we've just returned from a vacation to California, where we visited San Francisco, Monterey, and Yosemite. All great stuff! We saw our friends Claus and Claudia (and Francesca, and Christopher, and Theresa), who opened their home to us most graciously, and we had a wonderful stay!
I need to get back on the bike - as the vaca did not help with weight loss (up 2 lbs, thanks to lots of hiking for keeping that down to a manageable 2!).
Blood counts are looking good. HGB is still rising - hit 14 this week! (16 was the 'old' - pre chemo high.)
08:36:23 am, Categories: Treatments, 49 words
Feeling great! I'm training on a regular basis (on a bicycle mounted in a trainer - it's too cold out!). Still trying to drop some weight, it's not that easy... Seems gaining 15-20 lbs is pretty common nowadays with chemo - I suppose that's a good thing compared to the previous chemo.
07:16:30 pm, Categories: Treatments, 434 words
Feel great. Going for weekly blood tests (CBC) just to see how the numbers are doing. The WBC's and PLT's are back to normal, the HGB's are getting there. 12.2 last week, seem to be going up 1 point per week. I was 16 back in June b4 chemo, etc, so I expect I should get back to that level.
I'm back on a more regular routing of bike riding. I'm doing in it on a trainer in the basement now, as it's too cold for me outside! I try to get at least half an hour about 4 times a week, and usually extend one of those to an hour on a weekend. It feels good, and now my legs are the limiting factor, not my heart/lungs, which I felt more of b4 (i.e. my legs felt strong b4, but I'd find my heart hitting upper ranges faster than usual, and I would get more winded earlier. Now it seems to be more of the burning in my legs than my heart rate maxing out!)
The Polar S720i heart rate monitor (HRM) that my brother and parents got me for Christas is great. I've enclosed a screen shot of a graphic it produces (by dumping the data from the watch unit to the PC). I'm just showing heart rate and cadence, as I'm stationary and altitude doesn't change (or shouldn't!), and speed is checked at the front wheel (wireless), and on a trainer that doesn't spin. It is great to check your progress!
I need to get in touch with Steven, and see how he's making out, post chemo, well I hope!
I talked to a guy a couple of weeks ago, he has MCL. He was trying to figure out which path to take: which protocol, doctor, hospital, etc. It's not an easy choice, and there aren't any definitive answers. It's good to feel like you've made an attempt to help someone, hopefully I have actually helped.
Work is good - busy as can be, but happy to be back!
It is great to be home with family and friends, doing the normal stuff! I'll get some pics of my current hair status, etc. soon. I have eyebrows, and hair is growing back. Seems to be dark brown (same as b4), not sure if it'll be curly or straight... Facial hair is a bit different. A goatee seems to be growing in a brown color, with some grey at the bottom - where I had it b4. But the rest of my face is blonde or something, and really not noticeable. We'll see what happens!
11:46:55 am, Categories: Treatments, 90 words
Many thanks to Doug, Esther, Ellie, and Hannah for a wonderful dinner last night! They had us over for a celebratory dinner - and the kids helped with balloons and a 'Congratulations' banner. We toasted to health and good friends - both of which this whole ordeal has put quite a focus on! Many thanks for last night, and all your support through this experience!
It was a great evening, and hopefully today we'll get some sledding in with them, as we've got about a foot of fresh snow on the ground!
11:23:13 pm, Categories: Treatments, 502 words
Surprise, a Brunch, for me??
Great day today, not just because my eyebrows are coming back though...
Intended to do the bike this am, but that 5 minute doze turned into an hour, and then the whole family was in our bed, so there's no way you want to leave that to pedal on a bike...
We had a light breakfast because we were going to a brunch with my parents and brother and Kristine for a belated celebration of their 40th wedding anniversary. After breakfast we played a bit, and then got ready, and headed off to the restaurant. I see my brother's truck and my parent's suv in the parking lot when we get there - that's good. We see the matre de, and he has a bit of a confused look as I ask him where they're seated, but Alex walks out and greets us, and escorts us into the room - where I see lots of yellow balloons, my in-laws, brother in-law and his wife, my Aunt and Uncle, my cousin and his wife, my mother, annd of course Kristine. Mind you, this was just supposed to be Alex, Kristine, Mom & Dad, and our family.
So... Yeah, turns out Alex and Kristine planned a celebration for me that was a complete surprise, very uncalled for, but very appreciated! It was very cool. Great to see everyone in one place and catch up. It was just awesome, and Alex and Kristine really outdid themselves. As you've seen throughout the site, Alex has been awesome with rides to the hospital at odd hours, helping out with any and everything around the house, and just doing anything he could. Kristine was of tremendous support, coming to Hackensack with and without Alex, playing games with me, bringing me puzzles, reading material (I still have to return her stuff), and general encouragement. She even brought her best friend Jenny to see me once (Jenny's a really nice girl that's got an amazing job that I don't even think I can talk about, but...) and Jenny has been very supportive as well - saying my name out loud at her local Synagogue when it's time for intentions. If you've gone through something like this, you know you can't repay people for what they've done to support you, but they should realize how much it means - I certainly hope you two do.
Yet another really cool thing though - I got a really neat gift from my cousin. I got a Tour of Hope hat, signed by 3 members of the 2005 Discovery Channel team, and a cycling jersey as well. There’s a whole story behind it, but it’s late, and I’ll need some time to try to capture the whole essence of the story as it was conveyed to me.
Awesome time, many thanks to everyone for coming, and looking forward to more family get-togethers - just for the heck of it though!
08:06:04 pm, Categories: Treatments, 354 words
Follow Up Visit with Dr. Goy at the end of treatment
Today was my follow up visit with Dr. Goy, to review the PET/CT results from a week and a half ago (I had meetings last week and couldn't get in for an appt, but Coleen was kind enough to consult with Dr. Goy and she did let me know that he said all was well!).
Great visit, blood counts are coming back. HGB was at 10, PLT's are up, and the whites are doing ok - they seem to be a bit low, but that's written off to coming back from chemo.
I've actually got a bit of a head cold now. It started last Thurs pm, and it's now Mon, and I'm feeling better, have a bit of a cough, but not too bad. Admittedly, I haven't exactly been nursing it, as we were in Atlantic City this past weekend, having quite a good time. I wrote to a buddy, it's actually nice to be 'normal' sick....
Thanks to Alex for arranging the rooms, Omi and Opa, Grandmom and Grandpop for watching the kids, and of course the kids for letting us get away!
We need to schedule the next CT scan for April, and I'll see Dr. Goy a few days later to review, checkup, get blood work, etc. We talked to Dr. Goy about PCR testing, and as usual he was very explanatory, drawing on the exam table paper, showing us how it checks the chromosomes, etc - great stuff! (The nurses on 5PE used to tell me how they loved how he explains things!) The test can help to tell if the cancer is in your blood. The interesting part is that it's one piece of the puzzle, you also need to check to see if it's in your body in other ways - CT, etc. MCL tends to inhabit the gut (stomach, colon, etc) so it's important to check that out along the way. The R HyperCVAD is a great one for this cancer, and we're obviously quite optimistic.
The posts will be slowing down, but thanks for following along, and we'll try to keep you posted with events as they warrant!
08:29:39 pm, Categories: Treatments, 160 words
Day 184 (Wed) - 20th Day Post 4th 'B' Cycle, 8th Cycle total
Got great news from Coleen yesterday, the PET/CT scans were negative - which is a great word in medical terms. No sign of cancer! We're quite happy as you can imagine.
Blood work was ok, Coleen want's me to get more red, as the HGB was 7.9, still under 8. So I went to RWJ's Cancer Center and got 1 pint today, and I'll get another on Friday. Apparently they don't have a big supply of what I need. I'm O+, but with CMV Negative, Leukoreduced, irradiated, and I think that's it, that adds some complexity. Intereresting, in Hackensack it's usually not an issue getting it - the Cross Type and Matching takes some time, but getting the blood doesn't take that long - I'm sure it has to do with the size of Hackensack vs. Hamilton. RWJ Hamiton has a great facility though, and it's much closer than Hackensack... My HGB was 8.6 today, so it is better, we'll see what it is on Friday.
09:10:40 pm, Categories: Treatments, 130 words
Day 182 (Mon) - 18th Day Post 4th 'B' Cycle, 8th Cycle total
Quick update - got on the bike on Sun and today for about 35 min each day. Alex, Mom, and Dad got me a cool Polar heart monitor that lets you program in an exercise set. So I have a 10 min warmup, 3 intervals that take me up to around 170bpm, then get me down to 140 as a recovery zone, then a 10 minute cool down at 140-150. Neat stuff - as it really lets you customize your workout and get your heart going as much as you want to. I'm a bit winded doing it now, which is part being out of shape, and part still low blood counts I'm sure.
I went for a CBC test at lunch today, and won't have those results until tomorrow. Regular day in the office, and then home....
08:13:20 pm, Categories: Treatments, 214 words
Day 179 (Fri) - 15th Day Post 4th 'B' Cycle, 8th Cycle total
Spent the day at the Cancer Center at Robert Wood Johnson in Hamilton, getting 2 units of blood and 1 of Platelets. It's a very nice facility where the outer perimeter infusion chairs face out to a garden, and the inner ones face each other, but it's a very bright airy setting. I took a chair off on the side where I could be on the phone and not bother anyone (hopefully). It wasn't too crowded (only a few of us), so that was good.
I got my blood and felt better. You really don't feel better immediately - only because you really don't feed like there's anything wrong - until you run up a couple flights of stairs, or do something requiring energy! Then you notice the boost when you've got more blood.... I was 6.8 when tested this am, so I needed some HGB.
Also got a big 'ol bag of platelets. Those are funny. Blood comes in pints, platelets come in units. Some bags are small, some large, it's the luck of the draw. I've been at 5.something, and got a small bag, followed by a normal size one. Today I got lucky and got a big one (my platelets were 37, up from 17 on Wed, but still lacking).
Headed home after and onto a normal weekend!
09:02:00 pm, Categories: Treatments, 204 words
Day 177 (Wed) - 12th Day Post 4th 'B' Cycle, 8th Cycle total
Got my PET/CT scan today. No results for a few days, and I'll review them with Dr. Goy next week, or the week after.
Stopped by at the doc's office as well to get my blood work, as (1) I'm still not that far out of the 'B' cycle, (2) I've been a bit winded when I don't think I should be, and (3) I was one town over, and they get the results in about 30 minutes as opposed to next day!
HGB wasn't bad - 7.8, but Coleen said that since I'm feeling the way I do, I should get 2 pints. There wasn't time today, so I'll get some locally (saves the hour trip up there!)
PLT's were 17 - not great at all. Explains why the gauze pad filled up quickly after the PET/CT scan when they took the IV out! I'll get a unit of Platelets as well!
WBC's were 4.8 - good stuff. I should be able to ward off the winter bugs!
So, I'll be going to the cancer center at Robert Wood Johnson in Hamilton to get the stuff on Friday. I have mtgs in NYC tomorrow, and since I'm not at critical levels, I'm going to make those and do the blood on Friday.
01:46:56 pm, Categories: Treatments, 233 words
Day 173 (Sat) - 8th Day Post 4th 'B' Cycle, 8th Cycle total
Doing well! Amazing, ran a 99 degree fever, and just took an hour nap. That seemed to knock it down to 98.8. I had ridden the bike for just over half an hour in the am (161 bpm avg, with a 177 max), so I did feel good, just felt a little tired in the afternoon. This could be from low counts - it is day 8 after all, or the light fever, or whatever, but I really feel good.
I have some mouth pain - doing soup for lunch, etc. Using Sodium Bicarb as a mouthwash, and got some 'magic mouthwash' perscription from the doc. They call it that in the hospital, and the prescription actually says it too! It's actually Lanocane, Benedryl, and Malox mixed together. You rinse with it, and it numbs your mouth a bit, and also helps with the sores that can form after the 'B' cycle. I believe they're related to the methotrexate. I'd gotten them b4, but even though I only have 2 black spots on the inside of my cheeks, my tongue and mouth is pretty sore.
Still getting Neupogen shots, and haven't experienced any bone pain at this time. Still getting blood from the nose (again, not a nosebleed, just bloody discharge when blowing my nose). I'm sure it's from the low platelet count (should have gotten them checked on Friday - so I could have #'s on Mon, but...).
All is well..
11:18:56 am, Categories: Treatments, 484 words
Day 170 (Wed) - 5th Day Post 4th 'B' Cycle, 8th Cycle total
Had an appt with Dr. Goy today. Regular post-chemo follow-up. All was good - he seemed pleased, I got all 8 cycles in, etc. My counts were ok, HGB @ 7.9, PLT @ 26 (so that was a bit low), didn't get the WBC's - have to check those. So, given that I'm still on the way down (day 5), and the 'B' cycle drops me pretty hard, Coleen (nurse practitioner) opted to give me 2 pints of red, and a unit of platelets. So I spent the afternoon in the infusion room. Chris stayed for a while, and then she went home, and Alex picked me up (THANKS). Alex and I went out for Thai food for dinner after.
For follow-up, I'll have a PET/CT scan next week, and then meet with Goy the week after to discuss. After that, I'll get CT scans every 3 months, and blood work at the same time. If there's anything that pops up, I'll get a PET scan. The CT scan is a broader based scan that will identify more stuff - while the PET scan is more detailed for cancer specifically.
We saw Steven in the waiting room (Stephen a great guy that I met the very first day of treatment in the hospital that has MCL as well). It was funny - we didn't recognize him at first - he has eyebrows, and he dropped off some of the chemo weight (mind you - Steven is thin as it is, so I dind't think he had any weight to lose, but as someone had noted in some newsgroup - there's a 'moon face' associated with chemo - I think it has to do with all the fluids that are pushed into your system). He's doing great, and it was really good to see him (even if we didn't get to see his parents!).
I feel good. The blood should help, as I was feeling a bit winded when doing some stuff around the house. Never sure if it's in my mind, or real, but given the numbers are on the decline, it's probably real. The platelets should help with the clotting of course, and I'm getting some purple coloring on the back of my arms where I'm getting the Neopogen shots.
09:29:26 pm, Categories: Treatments, 51 words
Day 167 (Sun) - 2st Day Post 4th 'B' Cycle, 8th Cycle total
Another great day, church, take down the outdoor lights, a little clean up outside (with Emily's help), lunch, around the block with the kids for a scooter ride, and then a bike ride to the park. Had a fire in the fireplace, etc. etc. - just a great day - a great weekend!
09:23:09 pm, Categories: Treatments, 173 words
Day 166 (Sat) - 1st Day Post 4th 'B' Cycle, 8th Cycle total
The number of posts will diminish at this point. I'll document the after effects of the last treatment, as I'm very curious to see how this will end up - with a fever or not specifically.
I know my numbers will drop, the 'B' cycle will knock my WBC, HGB, and PLT's down. I already have some light bloody nose spray - it's not a bloody nose, just when I blow, there's some color there - standard post 'B', as the PLT's drop I assume.
I feel great, went with John to a B-day party today (he got to ride a pony!), we cleaned carpets at night - thanks Alex, did some post Christmas clean-up, etc. Just a good day. Still have the normal, don't know what I want to eat, feel real bloated, a little nauseas not and then post chemo blahs, but overall I feel awesome.
We all slept in the basement - sleepover of sorts - as we wanted the carpets to dry fully, and wanted to have some fun with it!
Liking being at home...
08:34:21 am, Categories: Treatments, 579 words
Day 165 (Fri) - 5nd Day 4th 'B' Cycle, 8th Cycle total
Should be getting out today. Numbers look good. Methotrexate was .04 (has to be .08 to be released, but they also want you to have 4 or so doses of Leucovorin, and I'm only on like 3 - they also want a 48 hour reading, which would be around 1pm today - they can defer that or...).
Feel good, looking forward to release, but I have a day's worth of meetings to attend, so a later release would actually work better. Last one is 3pm, so that could time out well. Alex has offered a ride, and I'm looking forward to Pizza tonight.
Appettite is dropping, had the roast pork for dinner last night, had one little bite, and it just didn't do anything for me. Went to the vending machine and had a bag of fritos - the salt seems to do the trick! Some water, etc.
Finished up chemo early this am (hooked it up around 2:30am). Methotrexate levels were at .04, so that's good enough to go home (they want under .08). Need more Leucovorin at home, but that's fine (they want 8 15mg treatments). Got somore more fluids, got my triple lumen removed - no pain whatsoever there, and Alex came to get me around 4pm.
Said my goodbye's to the excellent nursing staff. Bittersweat - don't come back except for pleasure visits was the basic theme. Apparently (can't remember if I've typed this b4), many patients don't come back for visits, and I'm sure it's because of the treatment/memory. However, I would like to stop by with some donuts, coffee, see how the wonderful people that helped me through this are doing. The lack of visits often only leaves the nurses seeing those that come back for bad news, not those that are doing well. They'd like to see the good stories too! So, I plan on doing some of that!
Came home to balloons on the porch, and a great poster made by the kids and Mom! Really nice. We had pizza (my choice), and a great cake - make by the kids and decorated by mom - with Congratulations John on it! My Mom was over too - Dad's fighting a cold and didn't want to subject me to it.
So, today ends my chemo treatment for MCL. During the next week I'll monitor blood levels (where I expect my WBC's, HGB's, and PLT's to drop), and I'm hoping I won't fever, as due to the lack of catheter, there's apparently less chance of that happening. You can drop the WBC's etc, and still not get an infection - so that would be fine - a simple trip to get some blood, etc - without an overnight stay w/b nice!
After that, I'll need a follow-up PET/CT scan, and then those every 3 months or so, and blood work weekly I believe. I'll work out more of the details with the good Dr. when I see him on Wed.
For now, I'm very happy to be done, extremely happy to be home with the family, and very grateful to everyone reading this, everyone that's provided wishes, hopes, prayers, thoughts, visits, and any possible good will towards our family. It's been quite a journey, and I'll paraphrase Steve Meyer (note posted on 'Personal Notes'), I wouldn't wish it on anyone, but it's been an amazing experience. Hard to verbalize.
I/We can't begin to thank everyone for their help, but please know that without the support of our family and friends I can't imagine going through this as we did.
08:08:46 am, Categories: Treatments, 224 words
Day 164 (Thu) - 4nd Day 4th 'B' Cycle, 8th Cycle total
Good night sleep, was really tired by day's end yesterday. Not great sleep the night b4, and a long day. Was just wiped. Couldn't even sneak in a bike ride! Will get one today. Feel good, Creatine is at 1.0, PH is at 8, so the numbers look good. I'll get my weekly CBC summary at the end, I feel fine. Still expecting to be back here about 6-7 days out for neutropenia, but without the hickman and any infection that may have brought on, I'm not sure if I'll need antibiotics, ect. The neutropenia cold just have me here for low counts, get some blood and platelets, and no infection - just being wary of getting an infection (with my usual WBC's of 200 at that point). We'll see....
Good day of work scheduled, and hopefully a bike ride - rather - will be a bike ride!
Got on the bike, good ride - tried out the new heart monitor using the interval function. Pretty cool - makes you do a warm up, do a predetermined interval level - where you get your heart rate to a level for 5 minutes (you set the level and time), and then you recover (i chose to recover to a heart rate), then 2 more intervals and recovery, then a cool down. Was about 45 minutes all together. Felt good. Plottted it on a graph (part of the software).
08:14:42 am, Categories: Treatments, 478 words
Day 163 (Wed) - 3nd Day 4th 'B' Cycle, 8th Cycle total
Another good night's sleep. Got to bed around 12:30, a couple of bio breaks, a better bloodletting - didn't seem to be as invasive and I managed to stay asleep or semi-comatose through most of it. It was the weigh-in that's annoying - you have to get out of bed! But back to sleep after that. Up around 7am to check in with the family and start the day!
Pete and Chris came by for a short visit (I had a bunch of conf calls, and they had to get John from school and off to playtime. Great to see Pete, who has better blood counts than I do (when I'm in perfect health)! Chris brought me a care package from my Mom, some veal, and potatoes, and banana bread.... And that's after Chris's care package of Chicken Picata (sp?), rice, asparagus, and pecan pie! AND - hospital food isn't bad - it's just, what would you eat??!! I'll be doing the bike later tonight, after some work, and maybe a nap. After the ride I'll have dinner.
Ok, the schedule got a little mixed up. I pushed work longer than expected, usually happens, and then forgot that Andy was coming up for a visit around 5pm. Sure enough, righ on queue! Many thanks for coming up, great to catch up and clear up my decision on which heart rate monitor and headlight to go with (cycling talk). Andy was kind and hung around until darn near 9, so I grabbed a meal after that (Mom's veal chops and taters and banana bread - nice...), and then ditched the ride, as I was pretty beat and wanted to wrap up some other stuff, and then was really wiped out and went to bed around 11:30.
PH is doing better - up to 8 now - good stuff! 3pm
Creatine is down to 1.1 now (from 1.3, was .9 when I came in, 1.5 is the high point where they start talking with docs - about suspending chemo), fluids are being pumped through, so that's good! Chemo is continuing!
07:25:41 am, Categories: Treatments, 285 words
Day 162 (Tue) - 2nd Day 4th 'B' Cycle, 8th Cycle total
Good night's sleep, up few times for bio trips; they pump you full of sodium bicarb during the Methotrexate admin. Even with that, they check your PH regularly, and I'm getting additional sodium bicarb pills. PH was 6 at last check. Then at 4am the overhead light came on for the blood draw. That's no fun! This is where I miss Denise who does the blood draw by light of a flashlight - sometimes you don't even wake up... (The blood's drawn from the catheter line - this time the triple lumen, previously the hickman.)
Good day working, bunch of conf calls, etc. Got on the bike for the first time in a while again. Did 25 minutes at an avergage of 168, max of 175. Maybe a bit much, but I felt fine, wasn't breathing too heavy, and I tried to knock it down a bit, but it kept up there pretty high. Part low HGB, part out of shape. I got a great new heart monitor for Christmas from Alex and my parents, so I'll program in an interval workout to try that out - that way it'll force me to keep to a reasonale level (I'll have to figure out what reasonable is!).
Last week of treatment... Talking to some of the nurses about that, and Gabby was saying that many patients don't even come back to visit, and the nurses wish they would. Me, at this point, when coming to see Dr. Goy, I'd like to visit, just to say hi. I don't think I'll have an aversion to this place, but I'm sure many do. The people here have been great, and it would be nice just to check in to see how they're doing. We'll see...
03:01:34 pm, Categories: Treatments, 432 words
Day 161 (Mon) - 1st Day 4th 'B' Cycle, 8th Cycle total
Checked into Camp Hackensack today (or my summer home, or whatever euphamism you want to give it!). We brought up a cheese/pepperoni/keilbasa/cracker platter for the nurses. They were really appreciative, and it was nice to give them something. Chris has made cinnamon bread before, but this was certainly a little bigger. They're a great group and it's nice to give a little something back. We're certainly not alone in that feeling - they've had so much food since prior to the holidays - the station where they keep it - right by the patient fridge - has been filled with cookies, fruit baskets, donuts, the works - since before Chrstmas. A testament to them.
Got checked in - nice window bed - looking out to the city (NYC) - nice for the last round! Got my triple lumen installed by Dr. Kline - she's awesome. GREAT bedside personality, and a good touch. The triple is a bedside procedure, confirmed by an Xray they do at your bedside - to make sure the line is in the vein properly. It's not really painful, but there is some pressure, and some weird discomfort as they push it into your chest. Gabby (nurse) was there to offer a hand to squeeze - it does help!
Pics of the triple lumen (and the marks from where the Hickman used to be):
They told me Steven checked out yesterday - he just finished round 7. They said he looked great and sent his regards. Steven, if your reading - glad to hear you're going for 8. Not that I want you to have more of this stuff - but I've always said I think I want to take as much as I can - to make sure I kick this. Likewise for you... Hope all is well with you, and a Happy New Year to you, Murray, Barbara, and the rest of your family!
I'm getting fluids now (3pm), and I'll get Rituxan as soon as it comes up. First a little benadryl, so maybe a nap around then. Chris headed back home, and Grandmom had taken the kids to see 'Cheaper By the Dozen 2' - so I'm sure that was a good time for everyone! (Thanks Grandmom!) Not sure if Uncle Alex went along or not....
Great HGB counts today - 10.5 - I can't remember when they were that high! No wonder I felt so good this past week!
FWIW, we saw about 11 NJ State Troopers with lights on today - having stopped cars along the NJTP. Half marked, half unmarked. Definitely out in force! (Vance J, I'm glad you're doing the managment/leadership stuff now, that TP stuff seems a wee bit risky!)
03:01:39 pm, Categories: Treatments, 312 words
Day 160 (Sun) - 20th Day Post 4th 'A' Cycle, 7th Cycle total
HAPPY NEW YEAR!!
Nice day at home. Actualy, Alex, myself, and the kids went out to a park to fly (1) a stomp rocket, (2) a pump up rocket, and (3) an air powered plane.
The stomp rocket is a simple setup with a plastic/rubber bladder that you step on that pushes air to a lunch pad to launch a plastic/foam rocket. A good step can get you about 150 ft.
The pump rocket is made by Estes (the model rocket company), and you hand pump air to a resevoir, and a guage let's you know when to stop - or where you are on a scale. A more elaborate plastic/foam rocket sits on the launch pad. That one goes up at least 200-250ft (they say it can do 300ft). (Safety feature - you can't tilt the rocket to aim it anywhere but pretty much strait up. So you can't aim it at your brother. Not that you would of course. You can aim the stomp rocket, but it doesn't have as much force.)
The air powered airplane is cool - it's a see through plastic plane, where the fuselage acts as the bladder, and there's a single piston 'engine' that receives the air pressure, and spins the prop. You pump it up with a small bicycle type pump (special for the plane). The wings and rudder are foam. This thing had to fly for about 300 ft. We had some wind, so we flew it into the wind, where it climbed, and then did a slow turn around to fly with the wind, and flew for a nice distance.
That, some playing on the swings, and some Razor Scootering by the kids and we had a nice time outside! Thanks for coming out Uncle Alex!
A pretty relaxing rest of the day, some shopping, etc (got 75% off of Christmas lights at Target - amazing - $2 for nice lights..).
03:12:27 pm, Categories: Treatments, 108 words
Day 159 (Sat) - 19th Day Post 4th 'A' Cycle, 7th Cycle total
Hung out around the house, played with the kids, did some shopping, etc. A nice quiet day for the most part. Watched Star Wars Episode 5 - The Empire Strikes Back. Everyone seemed to enjoy it. Only 1 more episode to go!
John III crashed around 10pm or so, BUT EMILY STAYED UP UNTIL 12:30AM She made it!! She was good too, not overtired or anything. She was happy she got to see the ball drop, as were we.
Quiet night, a little wine with dinner, and hot chocolate with some Bailey's during the movie, and that was our partying. Hanging on the couch with the kids, that's a good time!
03:18:28 pm, Categories: Treatments, 33 words
Day 158 (Fri) - 18th Day Post 4th 'A' Cycle, 7th Cycle total
Quiet day in the office - not many people in. Got some work done, still good to catch up. Had a few client calls - surprised to find people in, actually, working from home mostly!
04:21:36 pm, Categories: Treatments, 111 words
Day 157 (Thu) - 17th Day Post 4th 'A' Cycle, 7th Cycle total
Good day, still sleeping in a bit (till 7am - going to bed around 11-11:30) - I need to get back into a 6am schedule so I can get the bike training in!
The office is quiet this week - which is nice. Getting caught up on some stuff, having some client calls, but it's very quiet at the client site - which is also good for me! I can spend some time on stuff here, and catch up a bit with the folks in the office. Being away for treatment, and subsequent infection/fevers does take its toll; when you're in the office the time flies by.
S/b a quiet nite at home....nice.
03:09:46 pm, Categories: Treatments, 323 words
Day 156 (Wed) - 15th Day Post 4th 'A' Cycle, 7th Cycle total
Good day, went to see the doc. Nothing really new there. We brought in a platter (cheese, crackers, etc.) for the staff - so I got my blood draw quickly, as we set it up back in the infusion room where they usually have the goodies for the staff, and Dino does his blood draws there too - so he just told me to come over when I had a chance.
Waited about half an hour to 45 min for the doc. He did a once over on me, basic checks of the lymph nodes, blood work, and make sure I'm doing fine. Without PET/CT/etc results, there's not much to look at.
We chatted about some results that recently came out of MD Anderson - related to R-HyperCVAD - all encouraging. They're a continuation of previously published results I think, with just more data as the length of the study continues on. Mary - from Las Vegas was kind enough to send a PDF of the study to me. Her husband has done a great job of bouncing back from R-HyperCVAD and MCL, and is back to playing tennis and leading a normal life - which I am really looking forward to (ok, replace tennis with cycling).
On fitness, I got a really great heart monitor from my parents and Alex. I think it's a not so subtle hint that I need to get back on track with riding and fitness, as I started chemo strong with riding, but have been lacking lately. I'll get on the bike next week while in for the 8th round - figure I need to finish strong!
I spent some time following up on another blog; a friend (Cliff) of my friend Viraf has a lymphoma, and he's getting a stem cell transplant at Johns Hopkins. He's taking enough chemo right now to knock out his system, so they can transplant him. It's a tough route, and I wish him all the best.
04:14:20 pm, Categories: Treatments, 92 words
Day 155 (Tue) - 15th Day Post 4th 'A' Cycle, 7th Cycle total
Back to the office grind. Hopefully a quiet week!
The office was quiet, did some good work, and got caught up with the few in the office. Went to lunch with Mom, Chris and the kids, and Uncle Alex. Mom wanted to treat to this Indian buffet that's nearby. Just what we needed, more eating! It was nice though. Dad was feeling a bit under the weather, so he stayed back (I'm not sure he's that big of an Indian food fan).
Feel great, looking forward to the last round of treatments!
04:07:53 pm, Categories: Treatments, 76 words
Day 154 (Mon) - 14th Day Post 4th 'A' Cycle, 7th Cycle total
The day after Christmas. We played with toys and the kids and the kid's toys until around noon or slightly later. We were in PJ's and happy during that time! We ran some errands in the afternoon, and then had a reasonable dinner (first one in days), and Uncle Alex came over to watch Star Wars 3. Packed it in soon after and Chris and I said what a wonderful Christmas weekend it had been.
04:00:24 pm, Categories: Treatments, 346 words
Day 153 (Sun) - 13th Day Post 4th 'A' Cycle, 7th Cycle total
Emily came in at 5am (Chris was in with John, as he had come in our room around 3pm, and she went to his bed with him). She was excited as Santa had come and left a small present by her bedside, and the reindeer had made a mess with the cheerios, tracking them into her room and John's! Chris was vacuuming that up later....
I told her she had to wait until at least 6am! She got into bed with me. I think she just watched the clock, because at 6am she was up again, ready to go. I sent her to Chris to see if it was good enough (I used to get up even earlier I think). Chris said 7am, as the kids had been up late the night b4. So, at 7am, it was up again, and downstairs to check out the goods! They were psyched, and we'll put up some pics soon. We went through all our stuff and then had breakfast, and then back to toys!
We went to Omi and Opa's at 1:30pm or so, and Peter, Karin, Derek, and Tyler were there too, so all the cousins had a good time, as did the aunts and uncles! More great eats, and we went home stuffed again. We watched Star Wars 2 with the kids, and Uncle Alex came over too - a nice way to end the day. (I got Star Wars 1-3 for my birthday, and got 4-6 for Christmas. So we're watching all of them in the order 1-6 to keep the story line straight. Emily seems pretty into it, John likes the light saber battles, but the other stuff seems to bore him. Alex and I are into it - as it's the first time we've seen it in this order, in close proximity of each episode too - really allows you to see what's happening with the senate, etc. geeky, yeah....)
Oh, felt great, and REALLY GREAT TO BE HOME ON CHRISTMAS!
03:56:57 pm, Categories: Treatments, 215 words
Day 152 (Sat) - 12th Day Post 4th 'A' Cycle, 7th Cycle total
Happy Christmas Eve!
Kids are excited! I ran to do some errands with them this am to (1) get stuff done and (2) let Chris get some stuff done at home!
We went to 5pm mass, then to my parents for dinner and gifts, finishing up around 10pm, and the kids were beat, but did great. Lots of good food and drink - I had 1 glass of wine. That makes 3 for the whole time I've been going through treatment. I'm only a social drinker mind you, but it is nice to have a nice glass of red wine with a good meal. We left stuffed. The holidays have not been kind!
We put cookies and milk out for Santa, and some cheerios and water out for the reindeer. Santa had left a nice letter for the kids and Grandmom and Grandpa's, telling them how good they had been this year helping out Mom and Dad, and being good to each other. They're reallly been phenominal through this. Can't really tell that they've missed a beat. They've taken the whole thing in stride - including the Hickman, which has got to be a bit weird to see. They were of course happy to see it go!
Chris and I were up for a bit more, and then off to bed.
03:53:33 pm, Categories: Treatments, 107 words
Day 151 (Fri) - 11th Day Post 4th 'A' Cycle, 7th Cycle total
Doing great. Last day in the office b4 Christmas. Got out to lunch with some friends from the office, nice...
Got word from the doc (infectious disease) that I could stop taking IV Cipro and switch over to pills (750 mg). So, I took my last IV one (since I had it with me in the office), and then took out the IV (Nurse Kitty showed me how). No big deal, and it's great to be completely lumenless, and IVless. There are no ports attached to my body for the first time in about 5 months!
Nice night at home, the calm before the storm (Christmas eve and all...).
12:01:54 am, Categories: Treatments, 220 words
Day 150 (Thu) - 10th Day Post 4th 'A' Cycle, 7th Cycle total
Slept at home last night! Always a nice thing...
Feel good, got up, took an early conf call. Tried to flush my IV (peripheral, on my lower arm, just above the wrist on the top), and it wouldn't take the saline, and wouldn't draw back, probably clotted. Called the home healthcare provider, and they can't get a nurse out until later. I'll deal....
Went to work, came home at lunch, and the nurse had me pull out the old line (ez), and she installed a new one - great touch - little to no pain, and she got a good vein right away. We then ran the cipro from this 'eclipse' thing. It's a little ball that's pressurized, and there's a regulator that keeps the flow the way it should be. Neat. Much better than hanging a bag.
Went back to work, finished up the day, and I'm having my second round of Cipro now around midnight.
Here's a pic of my new peripheral IV and the eclipse ball of Cipro, partially deflated. (Oh, that's a sock on my wrist. You use it to cover the IV and keep all the extra cord from getting in your way when not in use. Neat trick - thanks to Kitty our nurse, and it is an old Christmas sock from Chris, so it's quite festive.....)
04:46:42 pm, Categories: Treatments, 190 words
Day 149 (Wed) - 9th Day Post 4th 'A' Cycle, 7th Cycle total
Good sleep - I think I slept from around 11 am until the 4am - turn on the really bright light over your head to stick your arm and draw blood - followed by bp/pulse/temp and stand up and get weighed. Ok, no go back to sleep. Thank you very much. Makes you really miss Denise taking blood from the hickman at 4am and you didn't even know.....
Did some good work today, feel good. Met with the infectious disease doctor, and I can go home today. I'll get the IV antibiotics, and then check on my status on Friday to see if the cultures are still negative - at which point i can go oral cipro.
Got another pint of blood today, was high 7's. Felt like I could use it. That's 3 pints this week if you're keeping track. Curious to see how much I'll need after the B cycle. There definitely seems to be a cumulative effect of the chemo. Even the A cycle is causing me to need blood now. Platelets are down a bit, 75, but s/b back up soon since I'm at day 9, and should be rebounding soon.
08:55:14 am, Categories: Treatments, 228 words
Day 148 (Tue) - 8th Day Post 4th 'A' Cycle, 7th Cycle total
Good sleep, except for when they now insert a needle to draw blood at 4am! (and then the weiging, and BP, pulse, temp, etc. No fever btw)
Doing some work, then hope to see the doc this am and get a feel for what's going on with the treatment of the bug. What is it? Can I take oral antibiotics? WHEN CAN I GO HOME?
The infectious disease doctors came to see me, and it looks like I can go home tomorrow. No fevers, feel good, seem to be reacting to the antibiotic and/or having the line removed.
They've switched me to intravenous Cipro, and they'll be sending me home with that. I'll have a fresh, regular, arm or hand IV setup, and I'll get 3 days of IV antibiotics at home. This is a little different, as they usually use a PICC line, or the Hickman, but this s/b good as it will get me home, and the home care folks will show me how to maintain the IV as it's a little different than the Hickman. After that, I'll got to oral Cipro (750 versus the usual 500).
They'll then keep the cultures growing, and the goal is to have nothing growing at the 5 day mark, and then they're confident that they've got it beat. So I have to call them on Friday to check that out.
09:23:38 am, Categories: Treatments, 966 words
Day 147 (Mon) - 7th Day Post 4th 'A' Cycle, 7th Cycle total
Pretty good night's sleep. Got 2 units of blood overnight, so the pre-treatment with Benadryl helps to wipe you out a bit! My HGB went to 6 something, therefore the 2 units... It's interesting, you get to sense when you're a bit low. I've been running in the mid 8's post chemo for the most part, and when I go into the low 7's, I can feel it when walking up stairs, etc. You get winded a bit, and just 'feel it'.
They took blood for cultures this am (have to get them via needle now that I don't have the Hickman anymore!). That'll help determine how I'm doing, and how long I'll stay. The doc came by this am and said he'd like to get me back home taking the antibiotics - I'd like that....
Got my vincristine push today. First time without a catheter. The intersting part is that Vincristine is a vessicant (sp?) - a drug that will kill your skin. So, when they run it through the catheter, no big deal, it goes right into your vein, and somehow causes no damage to your body. If they run it through a regular IV in your arm/hand, the nurse giving the chemo is usually ademant about being the one to put in the IV. They want to make sure they get a good vein, get good blood flow, that the patient doesn't knock the needle out, etc. If the Vincristine seeps out of the vein, or if the needle's not in right, it can leak out and kill the skin, and then there's skin grafts, etc. It sounds a bit dramatic, but I've heard enough about it to have some concern over it. It's to the point that since I had blood drawn from my right arm in the morning, they needed to watch where they gave the Vincristine, and the hole that was put in my vein to get the blood in the am, could become a leakage point when the vincristine is administered - and back to the skin issues. Neat stuff. The also administer it very slowly, mixed with saline, and they check for blood return every so often to make sure the needles still exactly where it should be. So, they mapped out where the blood was drawn from, found an unrelated vein, and then still picked a point above the blood draw site to add a measure of safety. (Ironically, I was on a conf call when the nurse - actually the nurse trainer was called in for this one - was inserting the IV and moving it around - when the client said 'John - can you take a stab at that one' - in reference to a question that was introduced. I had to tell them of the irony.... I know, it doesn't hurt much, but it's also not a pleasant experience - and trying to answer client questions at that time was not easy.) She found the vein, but even then had to move the needle/line around to get a good blood flow. Once that was acheived, she gave me the push, slowly, and kept checking with me to see if I had any burning, discomfort, etc. Of course, your mind plays a few tricks with you at that time, and any sensation you have makes you wonder. Mind you, they'd just been moving a needle around in my arm, placing and removing tape from my arm (pulling out arm hair, etc), and rubbing it with alcohol. So yes, there were a variety of sensations I was feeling - but none of them felt like burining, and it all went fine. that's pretty much it for the med stuff today, just getting antibiotics and fluids, still don't have an idea of when i'm leaving.
NOTE - Be an advocate for your own health. The docs and nurses are great, but you still need to stay on top of things. I was talking to the nurse about my meds, and she said something about my last Neupogen shot being tonight. That was only day 7, and I usually get it for 10 days post chemo, starting 24 hours after chemo. The doc can 'throttle' it, if the WBC is up to an acceptable level, you can skip a day, monitor, go back on, etc - nice way to handle it. So I raised the issue, we went to my chart, and for some reason there was a note that Mon w/b my last Neupogen shot. We called out to the doc to verify, and he said that it should go for the full 10. Important because my WBC was 2 on Mon am, and day 7-10 is really your low point, so I think I still need it raised up. Again - just make sure you, or your caregiver, or someone has an extra eye on these things. As good as your doc and nurses are, there's a whole lot going on!
Chris came up this am - GREAT to see her. And that's not just because she brought up food (quiche, chicken, rolls, birthday cake, soda)! We got to chat a bit, and then she ran off... Thanks Hon!
Alex and Kristine came up for a visit - Thanks! We played Bogle, and I even won one game. I think Kristine's still reeling from that one. She doesn't lose. (just trying to make me feel better, I know...)
I've got a great roomate - Frank, 70 years old. Tongue cancer. Apparently fairly common. He's getting 3 doses of chemo, then he'll get some radiation and chemo. This is better than the old treatment that used to involve surgery, and impact your speech significantly. He's in phenominal shape, but man, they have a hard time getting his veins. 9 attempts to do an IV last time, at least 5 this time. And he's got these sinewy arms, but apparently the veins roll.
07:04:02 pm, Categories: Treatments, 866 words
Day 146 (Sun) - 6th Day Post 4th 'A' Cycle, 7th Cycle total
Spent the night in an ER room. We got a private room, so that was good, and one of the nurses was great and got Chris a nice recliner (as opposed to the regular/hard chair she was trying to sleep in - with her head on the bed in front of her, or some other bad position). So we got some sleep from about 1:30am to around 6am when a doc came in, and then I think we zonked out again for another hour or so....
We played Scrabble, and I'm happy to say I won (despite Chris turning my 'funnel' into 'funnelS' and making it a triple value word worth 30 points!). We hung around in the am for a bit, then Alex came to give Chris a break around 10am, and Alex and I started to watch a scary movie...
And then the Docs came in to tell me they were going to take out my Hickman. They left to get supplies, I left to go to the bathroom, they came back, Alex told them I ran away! They said he'd have to step in and be the patient then... Removal of the Hickman was one of the things I dreaded the most. Had to do with reading Lance Armstrong's account of a similar removal, and a buddy in the office with something similar. Something about them yanking out this line that had become part of my body for the past 4 months or so. Mind you, I want to get rid of it - I want to play with the kids without having to worry about it getting snagged, want to NOT have to flush with heparin every morning, want to NOT have to tape it up to my body every am, and not have to wrap it every time I shower. HOWEVER, it did allow me to have blood drawn without getting a needle, did allow me to get chemo and IV fluids administered with a simple quick connect, and really wasn't that much of a hastle. I made out pretty well, I only have one more round of chemo to go through, and they can put in a triple lumen for that. I had one of those installed for my first round of chemo. It's an easy install (local anestetic), and it's good for about a week (longer than that risks infection). I had one for the first round because we were going on vaca to the shore the week after, and I wanted to go swimming - which you can't do with a Hickman. So the doc obliged and I did the temporary one for a week, got it out, and then on round 2 had the Hickman installed. Now, with 1 treatment to go, I go back to the temporary method, not bad.
The actual removal was no bid deal. Alex was in the room and watched the whole thing, and can tell you I was about as tense as can be, and there were wet spots under my legs (and pretty much everywhere), due to some nervous perspiration, my feet were pulled back in anticipation of pain, etc. (What a wimp, I know... but I did see scalpels come out of the kits...). The docs (1 regular surgeon and one resident that actually did the incision and some of the work) were great; very personable, yet very professional. Some lydocane (sp?) to numb the site (and extra shot or two just to be sure), out came the stitches - probably the worst part, then they identify where the 'cuff' is, how integrated it is (very - grows into the skin somewhat - which is what it's supposed to do), and they make the incision, clamp, cut, and remove. I didn't watch at all, just kept my eyes closed and felt some pressure, no biggie.
Then, instead of watching the scary movie we were going to watch, we decided to watch a sci-fi movie, as I was still a bit hyped from the hole procedure!
Not that long after we got word that I was moving to 5! Good stuff! The transport came around 3pm, up to 5, saw Gabby (one of the many great nurses there), and she apologized for not having a bed sooner - she new I was in the ER, and had made a bed for me on Sat, but scheduling just didn't work out. These guys really look out for you, it's great. Caught up with Gabby, got checked in by Sophia, and then got all settled in. Even saw Dr. Goy, Colleen and Susan. Dr. Goy's not sure as to what will happen right now. He feels the line was the cause of the problem, and IV antibiotics will take care of things, but they'll do more cultures to see how I am, and how long I need to get them. Without the Hickman, I can't get IV antibiotics at home anymore (another downside). I haven't been over 99 degrees since last night, so things seem to be responding (and I haven't had Tylenol since then either).
Getting caught up on the blog and mails since I haven't been able to connect at all while in the ER....
On 2 Antibiotics for Gram Negative something. Azactam and something...
07:04:06 pm, Categories: Treatments, 470 words
Day 145 (Sat) - 5th Day Post 4th 'A' Cycle, 7th Cycle total
We have a family birthday party scheduled for John's 5th bday today. We went back and forth on cancelling, etc due to my fever, but seems even if I have it, we know what to do (take 3 tylenol and it'll settle).
I talked to Goy in the am, and he said if the fever went over 101 to come to Hackesack. Seems it's not behaving like a virus, not like the disease, so he's not quite sure. He suspects the Hickman line, and seems like he'd pull that if it continues.
I took it ez in the am, and then around 11am I started to get chills. I took the Tylenol, got in bed, and got all covered up. Did some shaking, but not too much. The fever got up to 102.2, and then came back down again. We held off going to Hackensack until after the party, figuring, it's been doing this for 3 days now, 5 or so extra hours is not going to matter much (and it didn't).
We had the party, I came downstairs and grabbed some pizza and cake, and John opened gifts, and then Chris and I headed off to Hackensack! We got to the ER, got a private room in relatively short time (actually kicked someone out who was out getting tests I think!). Got blood work drawn for CBC's, cultures, etc. And then the waiting game. Wait for results, wait for a room, wait for attention, etc. I carry a thermometer in my briefcase so I can monitor my temp after chemo (as you're supposed to), and Chris would check my temp every so often (15 min intervals at some point). When my temp goes up with this, it tends to go up quick, and that's what the doc in Princeton said may lead to the chills, or Rigors (sp?), it's the body's way of reacting to a rapid ride in temp in a short time. Sure enough, it's good Chris watched, because nobody else took a temp while I was in that room, and I went from 100 to 102.7 in about an hour and 45 minutes. I had some chills, but nothing that big. I got Tylenol and everything started to come down.
Key thing - you need to watch out for yourself - the docs and nurses are good, but they're understaffed, busy, etc - and you really need to help yourself. Chris monitored and went out to tell the doc/nurse 'hey, he's 102 now, he might need tylenol'. That's huge. Leaving it all to the patient is not a good thing - we're not always our best advocates.
The rest of the day/night was uneventful; watched TV, relaxed, got IV fluids, and saw Dr. Goy briefly. He wanted to see results before making a decision about pulling the line. He seemed to be trending away from pulling it now.
07:40:07 pm, Categories: Treatments, 248 words
Day 144 (Fri) - 4th Day Post 4th 'A' Cycle, 7th Cycle total
Slept ok last night, got up a few times, either chilled or sweating. Seemed like the fever broke. I took Tylenol at 4am, and that seemed to be it - got warm enough, then got sweaty and thought I was done. However, at around 11:45am, I started to feel chilly, followed by the shivers, and about 15 mintues of that again. Took the Tylenol immediately, and that seemed to diminish the intensity of the chills. I went from around 98.4 to 102.2 in about half an hour.
The temps down a bit now, 101.5, and I feel fine, just a bit beat from all the fluctuation I'm sure. We've been on with the onc, etc., and there's not much to do, as all CBC's look fine, and they're waiting on the cultures to come back. Apparently, it would be ideal to take the culture while I'm actually at 102, but there's little chance of that unless you're under observation, as it does seem to go down pretty quickly once the Tylenol kicks in.
Will keep in touch with the Docs, and see where this goes, it's more annoying than anything else.
Is it related to the Hickman?
We all watched Star Wars 1 (The Phantom Menace) at night - nice... The kids are into Start Wars - very cool! And watching it from the start is pretty neat - as opposed to starting mid way like 'we' all did.
10:22:09 am, Categories: Treatments, 219 words
Day 143 (Thu) - 3rd Day Post 4th 'A' Cycle, 7th Cycle total
Started out fine - working from home in case this thing acted up again, and then at about 9:30 the chills came on with a vengance. Put on extra layers, couldn't stop shaking (shivering), got in bed, put a heating pad under my back to heat up, was 99.5 b4 the heating pad, that raised it to 101.5. I'm going to the ER at Princeton, as the docs office wants to get me on anti-biotics asap, concerns about being septic (need to look it up).
I feel better now, not shivering, and we'll head off shortly. We'll get blood cultures taken, the works, just takes a bit of time. (don't want to get out of the bed though for fear of cold!)
Hung out at the hospital for a while, got blood tests (CBC - great counts, cultures), chest XRAY, EKG, all looked good. Nothing positive showed up, so hours later I was released, and Alex took me home (Thanks again!!)
Took 3 (325) Tylenol while at the hospital, and then 4 hours later 3 more, as I was starting to get chilled. The fever accompanies the chills... Started getting chilled at night again, and took more Tylenol at 9pm - helped. Called the on call onc just to keep him up to date.
Feel pretty good otherwise, just a bit tired, no doubt due to battling the fever...
03:31:31 pm, Categories: Treatments, 273 words
Day 142 (Wed) - 2nd Day Post 4th 'A' Cycle, 7th Cycle total
NOTE - I appreciate the 'Comments' that are left on the Blog, and just want everyone to know that I try to respond with a little note on them after I read them. It's easier than e-mailing, and I can share more with everyone that's following.
Feeling a bit blah today. Seems I got a reprieve on the '2 days after chemo blahs' by a day. Usually, the first 2 days out of chemo, I have low energy, can't figure out what to eat, if I'm hungry, if I'm not, etc. Just a 'blah' feeling. No fever, no aches or pains, just not 100%. Still very doable, in the office for an 8am mtg, etc., but I opted out of a holiday dinner in the city tonight to keep my energy and not over-do it (and not get grief from any number of family members and friends).
So, aside from that, it's a good day, cold though! And I'm dressed for NY and not going! (I know, there are worse things.)
My buddy Andy is heading out to see another friend that just had surgery for colon cancer. A few years younger than me, and apparently it was emergency type surgery. Amazing this cancer thing....
One more thing - when I was getting my PET/CT Scan this past Monday as part of the possible 'lung biopsy procedure', I looked up at the donut type machine that I was going in, and sure enough, there it was, "Siemens". Immediately thought of Claus (and family)! (Our good friends that have hopefully only temporarily moved west, and who is employed by the same.) Glad you're still taking care of me!
03:26:43 pm, Categories: Treatments, 39 words
Day 141 (Tue) - 1st Day Post 4th 'A' Cycle, 7th Cycle total
Feel great today. Lots of energy, in the office, just a really good day. Had a great breakfast, lunch, dinner - appetite in general. Different than the usual day after chemo ends. I'll take it!
Good to be home too!!
09:09:14 am, Categories: Treatments, 142 words
Day 140 (Mon) - 4th Day 4th 'A' Cycle, 7th Cycle total
Great night's sleep, last day of chemo for this cycle! Hooked up to Cytoxin, and I should get my pushes tonight a little early (s/b 12 hours after chemo ends) as they're great to try to get me home at a reasonable hour, and Alex has offered to pick me up.
Feel really good, there's been no sign of a temp at all, I have to get my CBC's for the week, I haven't been tracking them. I'll post them later.
Interesting on the CBC's, they trended up while I was in the hospital. I'll get them again on Thursday, so you can see what happens after chemo ends, and then again on Monday.
Got home, great to be home. Alex is great and picks me up, takes me out for a bagel, carries my bags, a good brother indeed. Many thanks.
08:15:25 am, Categories: Treatments, 217 words
Day 139 (Sun) - 3rd Day 4th 'A' Cycle, 7th Cycle total
Another good night's sleep - got up a couple times because of being a bit hot - the plastic mattress covers aren't great. And of course vital and blood checks, but good sleep overall.
Dose 4 (out of 6) of Cytoxin. All proceeding well.
Will get on the bike and do some work today. Should be a quiet day.
Got some good work done today (reviews that I needed to catch up on). Then Kristine came over and brought some excellent cheesecake that was supposed to be for Alex, but.... And she brought Dunkin Donuts coffee too - that was nice.... Then we played some game Bogle, that was appropriately named for me. Kristine beat the pants off me again, and again... She offered to lose, but I said that wouldn't be any fun, especially after I had become so good at doing that myself... Thanks for coming up!!
Got on the bike after that, did 30 minutes with an average heart rate of 165. It's the 2nd time on the bike in over a month, and it felt good, but hard. The resistance was all the way down, and the RPM's had to be around 65, and the heart was obviously still working pretty hard. Breathing was good, not too heavy once in my cadence. The legs felt it, but in a good way.
11:18:56 am, Categories: Treatments, 192 words
Day 138 (Sat) - 2nd Day 4th 'A' Cycle, 7th Cycle total
Great night's sleep - except for some poking and prodding in the early am.
Got on the bike today for about 20 minutes to get back into it. Also didn't have my heart monitor, and I like to see what's going on there. Chris is bringing it up today, along with the kids, with whom I'll get to have lunch! So that's a good day right there.
Getting Cytoxin, Mesna, etc. All standard stuff...
Chris and the kids came up, and it was great. We had lunch in the lounge, and then played John's Spiderman Match Card came, and then a 4 way game of war, where John won after being a card or 2 away from being out! Great to see Chris and the kids all at once.
Alex, Mom, and Dad came up after dinner, and that was also great. Alex and I started a game of Othello, but that got put away so we could all play Scrabble, where Mom won! Good fun had by all. Dad is looking good, and seems to be pretty much back to normal after his bout of fun this summer (kidney stones, etc.).
A very nice day....
11:20:54 am, Categories: Treatments, 153 words
Day 137 (Fri) - 1st Day 4th 'A' Cycle, 7th Cycle total
Had a good night's sleep, no fever.
I've been given the go ahead for chemo today, so Rituxan should start soon.
It stopped snowing in Hackensack, but there was enough snow at home to close schools, so the kids have a 3 day weekend, and Mommy was going out to shovel the slush. Sorry Hon, I truly would rather be there shoveling than be here. UPDATE - Many thanks to Bill and Betty for shoveling the drive! Chris was taking pics of the kids, and when she went out front to shovel, Bill and Betty were almost done... Thanks again!!
Got Rituxan running at about 5:30pm or so, Cytoxin started (with Mesna) at 8:30pm - that'll run for 3 hours, and then 5 more times every 12 hours for a total of 6 treatments - which will go until Monday at 11:30am.
Leslie came up for a visit - many thanks, great to see her and catch up on our families, etc.
11:08:42 am, Categories: Treatments, 177 words
Day 136 (Thu) - 23rd Day Post 3rd 'B' Cycle, 6th Cycle total
I think the fever may have broken last night. I was hot/cold during the night, but feel good this am.
Going to the hospital for chemo - or at least for observation before starting chemo! 10am reservation time.
Checked into the hospital, got setup, and they're going to wait on chemo until Friday - so long as I keep the fever down. Blood was drawn from each lumen of the Hickman, and also from an arm vein (peripherally) to get cultures started. I also got a nasal wash. Now there's a fun thing. They take a tube of saline and shoot it up one nostril, then you have to blow back into a container (repeat for the other nostril). They then culture that sample to see if you have any flu or RSV or related activity.
The nasal wash came back negative, as did the Hickman line cultures. Still waiting on the peripheral culture, but it should be negative. May have just been a simple virus that ran its course. If everything stays quiet, I'll get chemo tomorrow.
12:20:30 pm, Categories: Treatments, 293 words
Day 135 (Wed) - 22nd Day Post 3rd 'B' Cycle, 6th Cycle total
Ended up in the ER last night - fever got to 100.9, called the doc, and Colleen said to come in (want to make sure nothing's growing, etc.). So Alex gave me a ride there around 8pm, getting there at 9apm, a bit crowded so it took a little while, and then we waited in a hallway on a gurney. They took a chest x-ray (looked good), drew some blood, and talked to Goy. The fever had subsided to 99.4 by the time I had gotten there, and Goy was good with letting me go, just monitor it, and take Tylenol if it spikes again. I'm still scheduled for chemo tomorrow (a scheduling error bumped it from Wed to Thurs).
Many thanks to Alex for the trip - we ended up getting home arounnd 3am, but it was home...
It is kind of lame being in the ER for a fever, but it helps when you say 'cancer related' after to give it some credibility. (one of the conversatoins Alex and I had while waiting, and waiting, and...)
Weird. Started getting chilly around 1pm this afternoon, put on a sweatshirt (over my flan and t-shirt), and was still chilly. So I got in bed with the heating pad for my back, and to warm me up, and cranked up the heat in the bedroom. (Our master bedroom has separate heat since it was an addition.) Getting warmer, but sure enough, there's a temp, got up to 101.0, took a tylenol, and wait and see. It's pretty much the same story as yesterday, and since they drew blood then and weren't concered, it s/b the same today. If it goes much higher, I'll call. I'm still scheduled to go in tomorrow, so they'll have me under close observation.
03:01:42 pm, Categories: Treatments, 108 words
Day 134 (Tue) - 21st Day Post 3rd 'B' Cycle, 6th Cycle total
Ok, the snow thing was a bust. There was snow, but not even a delay for school. Chris asked if someone did our driveway, but it just didn't accumulate on blacktop. So much for that...
Feel good, worked from home in the am, then headed into the office in the afternoon. Feel pretty good, Lana said I looked flushed, and my temp is 99.5, and I'm a little bit chilly, but I have short sleeves on. I'll put a sweatshirt on shortly. I do NOT want to delay chemo any more - confirmed that I have a bed coming tomorrow, just need to get the call from the hospital tonight.
11:12:43 pm, Categories: Treatments, 511 words
Day 133 (Mon) - 20th Day Post 3rd 'B' Cycle, 6th Cycle total
Schedule to go in for some procedure to check my lungs to see what the 'opacity' in the pet/ct scans is. Most likely some fungus or bacteria that needs to be treated b4 getting more chemo to get it knocked down. Not sure of any details on the test, but I'll post once I get some. I think I'll be staying overnight, and not sure if I'll have connectivity (PC).
Finally got in to the hospital for the exam (some delays, confusion, etc.) around 12:30pm, actually in the radiology area around 1:30pm, and wheeled into the PET/CT room around 3pm. They do a scan of you to see where the 'stuff' is, and then they planned on giving me a local, and then inserting some scope in to take a biopsy of the 'stuff' to see what it is, and do pathology and cultures on it. Suspicion is that it's fungal, and not lymphoma (good of course - given the options). They did some scans - with me on my back, and then had me roll over and did another (a little different). The doc that was going to do the procedure then came in and said they weren't going to do it, as he had consulted with Dr. Goy, and the spots that had been there had dissipated considerably. We think it has to do with the antibiotic (Vanko) that I'm on. He decided not to do it as (1) they spots had shrunk, and (2) apparently it would be quite hard to actually get samples given how small they had become. I think there's also a risk factor involved, as when the doc was explaining the procedure to Chris and I, there's apparently a 10% chance that since they're inserting a needle in the lung, the lung can deflate. Sometimes it's no big deal, and it only partially deflates, and they effectively watch and wait, and it get's better, other times they need to assist and insert a tube and remove the air from the chest cavity, etc. etc. Regardless, seems to me that you need to weigh those risks with the chance you think you're actually going to get a good specimen with the fact that it seems to be getting better with current treatment, etc. I'm still interested in knowing if we should be treating it with something else as well. We'll talk to Dr. Goy tomorrow.
Still scheduled for more chemo on Wed.
Many thanks to all for the kind messages on the remission, we are very happy, and really appreciate all the support.
We're also getting ready for about 4" of snow tomorrow, and the kids went to bed with their PJ's on inside out and backwards - to help the snow close school tomorrow. (John's not in school yet, but he's helping sis as much as he can! - he even had his socks on inside out and upside down.)
going to bed, it's after 11pm, and i just saw that my lovely wife has her pj's on inside out and backwards too! oh well, gotta go with the flow!
08:12:47 pm, Categories: Treatments, 243 words
Day 132 (Sun) - 19th Day Post 3rd 'B' Cycle, 6th Cycle total
It snowed last night!! About 3 inches of wet snow, but it covered everything!
While we were making breakfast, Chris mentioned that someone was on the driveway. Sure enough, someone was, and shoveling for us - Earle and Marsha - MANY THANKS!!
A great breakfast, church, some errands and then Chris tried to get a Christmas picture of the kids. That's always a fun time. John is pretty much Calvin of Calvin and Hobbes. Try to take a picture of him, and it's good for about 40 pics. Thank goodness for digital cameras. I think we got a winner though. I'll post it when we sort through the pics.
The kids and I played in the snow, and made a small snow fort. They wanted to do battle with Mommy, but I said she's not much of a warrior - try me out!! So we had a snowball fight. The kids had their fort, and I was unprotected on the other side of the driveway. Luckily, they couldn't throw that far. I got a couple of good shots in!!
We had another fire in the fireplace, played Old Maid, and then watched some home movies.... A good day.
Still not sure when my appointment is tomorrow for the lung scan thing - or what exactly the procedure is. I called the hospital, and the group that does it is the 'special services' unit of radiology, and they're not in on Sundays - so I'll be calling them at 7am tomorrow.
08:05:13 pm, Categories: Treatments, 144 words
Day 131 (Sat) - 18th Day Post 3rd 'B' Cycle, 6th Cycle total
My nephew's 1st Bday part was today! He's doing some walking, so that was great to see - gettting more of a personality, all the good stuff. A great time was had by all, thanks Peter and Karin!
Came home from that, had a fire in the fireplace, and then Uncle Alex came over and he, Em, and I watched Harry Potter and the Sorcerer's Stone, and John and Chris watched Scooby Doo and the Headless Horseman. John came in and out to watch parts of Harry Potter, but it was a bit intense!
Back pain started up again today. Ironic - a couple of days after the PET/CT scan, same as last time. I tried not to do anything wrong when getting off the table, but maybe I swung my legs wrong, dunno. I'll talk to Dr. Goy and my family Dr. about it.
09:57:05 pm, Categories: Treatments, 532 words
Day 130 (Fri) - 17th Day Post 3rd 'B' Cycle, 6th Cycle total
Had a 10am appt with Dr. Goy today, which meant that I got in to see him around noon.... I think this is fairly common nowadays with any specialist. I did get my blood draws prior to that, including vanko levels, cbc's, etc. All from the port, so that was painless!
Then we did get to see him and got the good news - Remission! So, 2 days after my birthday!!(Almost as good as Cory's news on his birthday of his MCL remission!) Many thanks to all our friends and family whom are as happy with this news as we are! 2 more cycles to beat the heck out of anything that remains hidden, or just to make sure everything's been beaten down. I liken it to the horror movies when you want the hero to make sure they 'take care' of the beast/creature/maniac/etc. - use the extra 8 bullets - make sure it's gone. 2 more rounds of chemo, do it - just make sure you beat it down.
The PET/CT did reveal some 'mutifocal opacity' in the lungs, which 'may be infectious in etiology' (direct from the pet/ct reading doctor's notes). Seems there's some stuff showing in the lungs that doesn't look like cancer (no activity on the PET, but more visual through those tests. It showed on the previous PET/CT round, and it's there again on this one. Goy suspects fungal, or bacterial activity - could be from the hospital, etc. He had a pulmonologist (sp?) check out the slides, and I have an appt on Monday with one. There will be some testing performed to see what it is, and get it treated. My chemo (Round 7) had been scheduled for Sunday, but Goy wants to back off on that a few days to get this identified and treatment for it underway. Makes sense. No need to reduce the body's immunity through chemo while you know there's something going on - that you haven't identified yet. He's not 'that' concerned with it - it's a bit of funk that needs to be treated, and then we move on. He's setup my chemo bed for Wednesday, so that's encouraging. (I will miss my work end of year meeting/party, but a small price to pay....)
Seems part of the testing may be the insertion of something into the chest cavity to check the lungs - done with a local, and promised to be less painful than the bone marrow aspiration. Now, there's a good barometer of discomfort. For those that have had them (bone marrow aspirations), they are NOT that fun. 'Discomfort' is a good term for it, and frankly, anything involving 'discomfort' and 'you'll feel some pressure' is not good. But, since it's less than that, I'm sure it will be fine... All in all, I'd rather have a general, but I'm sure that's not gonna happen.
Also - good luck to Allison, who's on a tough diet this week of Lamb, rice, and water to rule out some allergies. And nice job to Mom and Lauren who are doing the same diet to hang tought with her! Good luck guys, it'll be over soon, and then you can get back to some good eats!!
09:40:14 pm, Categories: Treatments, 50 words
Day 129 (Thu) - 16th Day Post 3rd 'B' Cycle, 6th Cycle total
Another good day. Feel good, still taking Vanko.
Went to an allergist today to see if I'm allergic to penicillin (PCN). All tests were negative - so it looks like I can get PCN next time instead of Vanko, which should be more effective for fighting B Cycle infections. Good stuff.
12:02:29 pm, Categories: Treatments, 27 words
Day 128 (Wed) - 15th Day Post 3rd 'B' Cycle, 6th Cycle total
Another warm, sunny day. Hard to believe it's almost December!
Good day, did the Vanko in the office again.
PET/CT Scan tonight, no eating after 12 noon!
12:03:15 pm, Categories: Treatments, 65 words
Day 127 (Tue) - 14th Day Post 3rd 'B' Cycle, 6th Cycle total
Good day, feel completely normal. Good day at work.
I've been taking my vanko while at work in the am. It takes an hour and a half to drip, so doing it at home when I have 8:15am conf calls just doesn't work out, so I bring my pole, bag of vanko, and associated stuff to the office, close the door, and do my thing.
04:43:11 pm, Categories: Treatments, 166 words
Day 126 (Mon) - 13th Day Post 3rd 'B' Cycle, 6th Cycle total
Slept at Mom and Dad's again last night - thanks! Got up early and headed off to Hackensack for a blood draw (CBC's, Culture, Vank levels, the works). CBC's were good, Platelets are at 43, coming back. All the rest are fine. Want to get the culture results so I know if the line can stay in or not.
Went to work right after, and hooked up my Vankomycine. Did some conf calls, and it was a pretty good day!
I'll be heading home and sleeping home tonight. Chris is doing better, and I really miss being there! Mom and Dad's is great, but there's no place like home!
Made a Dr. appt for Thursday to get checked for an allergy to pennicillin. I'd like to be able to get that for the next neutropenic fever (which will happen in January).
This week I have a PET/CT scan on Wed, Allergist on Thurs, and Dr. Goy follow-up on Friday for the results of the PET/CT scan.
04:34:44 pm, Categories: Treatments, 106 words
Day 125 (Sun) - 12th Day Post 3rd 'B' Cycle, 6th Cycle total
Good to be home! Stayed at Mom and Dad's at night, as Chris and Emily are a bit ill, but I went home about mid-day and we put up a Christmas tree (artificial) in the kitchen, put lights on, decorated, etc. John and I did some "fixin'" of some of his toys (dead batteries) - always a good time in the basement shop. Had dinner together, hung out a bit, and then headed back to Mom and Dad's. Hung out with Alex and watched some family videos that I had copied from 8mm tape to DVD. Good stuff.... Did a bit of work and packed it in.
09:23:52 am, Categories: Treatments, 233 words
Day 124 (Sat) - 11th Day Post 3rd 'B' Cycle, 6th Cycle total
Great night's sleep last night - the 10mg Ambien may have had something to do with that! ; )
Feel good, fever has been under 101 for a while - 99's, and one 100.1 last night when playing scrabble, so it looks good for release today. Just need to get all the Dr. signoffs.... WBC's are 8.something, so they're nice. Not sure of the other numbers yet. Want to see the PLT's jump up a bit, but they were coming along. Platelets were still low (19), but I looked at the log, and they take a while to come back, and then they tend to come back strong.
I'll be back here in just over a week for the next round, so I'd like to get out and spend some time at home! I'll be wearing a mask at home, as Chris is still under the weather with a bug, and Em's got a little something, so caution there.
Temp has stayed down, and I got the go ahead for discharge around 4:30. Disconnect, new caps and dressing, flush, and get dressed for home! Alex and Dad are heading up to pick me up, stuck in Thanksgiving weekend traffic, so it'll take a little bit.
Stopped by to see Steve, and his Mom and Dad were there too. He's making an incredible recovery from the pneumonia, etc. I'm sure I'll get to see him during one of the next few sessions!
08:32:09 pm, Categories: Treatments, 345 words
Day 123 (Fri) - 10th Day Post 3rd 'B' Cycle, 6th Cycle total
Did not sleep well last night. Woke up around 2:30am, and tossed and turned for the rest of the night. They stop giving out ambiens at 2am, so that was out of the question. Temp was 102 when they took my vitals at 5am. Not sure where that came from, my temp had been good (under 101, and really in the 99's) before that. Maybe it just broke....
Dr. Goy stopped in this am, and he wants me to stay one more day due to the 102. The cultures were still positive, so he still hopes the vanko can kill them in the hickman, but if not, the hickman will have to come out. If I get more fevers, he wants cultures drawn. He also wants me to come to his office on Monday to get blood drawn for counts and cultures. So close, but yet......
My WBC's are 3.7 - so they made a huge jump up. All the Nuepogen helped, along with the fact that it's now day 10 post chemo, and that's when you're supposed to start back upward. I started to get some bone pain yesterday - in the knees and hips - normal stuff towards the end of the Neupogen cycle for me. Platelets are at 19, coming up, so that's good.
I feel fine, decent energy, etc - great looking day out - blue sky, etc. Chris said it's in the 20's though, and there was a really strong wind yesterday that blew some of our stuff around! Chris is stil under the weather, and will hopefully be turning the corner on hers (and not prove positive for mono!). Tonight's the local town Christmas parade, and the kids should get to go see that.
Alex and Kristine stopped by tonight, we played Othello, and Scrabble. I beat Kristine at Othello, and she kicked Alex and I in Scabble (Luis, don't ask, it wasn't even close! - she opened with all seven letters.). Thanks for the visit guys, very nice. (Alex has become quite a fan of the hospital's grilled cheeze sandwiches.)
Looking forward to going home tomorrow - barring any weird fevers.
08:47:06 am, Categories: Treatments, 275 words
Day 122 (Thu) THANKSGIVING - 9th Day Post 3rd 'B' Cycle, 6th Cycle total
Our most sincere wishes to everyone that's looking at this for a Very Happy Thanksgiving to you and your families! Lot's to be thannkful for. If you've not read it, I'd encourage you to read Steven Meyer's write-up that I've posted on the Personal Note Tab titled 'Note from an MCL'er' http://fightingmcl.com/index.php?blog=11. I'm sure you can apply it to many things in life, and it certainly puts things in perspective.
The kids both made great Thanksgiving projects that Alex brought up last night. Emily made a really cool looking turkey that's hard to describe, but all the nurses have complimented it; and John made the traditional hand turkey - and it looks really cool! Both are proudly displayed on my window sill!
Alex and Mom came by with great eats for me - turkey, stuffing, sweat potatoes, pumpkin pie, some apple thing, all excellent!! It wasn't the same as being at home, but it sure tasted good!
They left, I watched a movie and went to sleep early...
10:26:26 am, Categories: Treatments, 562 words
Day 121 (Wed) 8th Day Post 3rd 'B' Cycle, 6th Cycle total
Slept better last night, so I'm very happy about that!
Goy has me on Neupogen, which is normal, and he's giving me another shot that's got a similar use (raise the WBC count), and Mary (nurse) just told me he prescribed 2 Neupogen shots for me today! So he's really trying to get my WBC count up! Gotta love him.
I'm getting 2 units of Platelets today, as well as 2 pints of blood. He's trying to boost me up on all fronts so that if I can go tomorrow, I'm all set! At the least, he doesn't want me to have to deal with the blood pressure cuff on all the time during Thanksgiving. You have to have your BP monitored every 15 minutes while getting blood - and it keeps you tethered for the most part. You can walk around with one pole with the pumps and bags of stuff, but 2 poles is more than I can manuever!
Just saw the infectious disease dr. They drew blood for a culture this am, and if that's negative, that's good. if it's positive, the hickman may have to come out, as the bacteria would still be active in the catheter, and that's not good.
Overall a really good day, a Joisey boy turned country bumpkin named Vinny stopped by for a visit - great to see him and catch up! He hasn't picked up a twang yet, but I'm waiting. My brother came up at night with some steak and keilbasa (sp?) that we had cooked up at home earlier in the week - and Chris packaged it up with some baked potatoes and veggies, so we feasted on that. Amazing, Alex wasn't hungry, but managed to devour his portion in no time flat.... Watched some Seinfeld, and re-watched a movie called the Princess Bride. Neat movie - lighthearted, but really cool. Fred Savage, Peter Falk, Billy Crystal, Andre the Giant, and those aren't the main characters - interesting cast. Famous line - 'My name is Enigo Montoya, you killed my father, prepare to die' with a heavy Spanish accent.
Interesting hospital fact - they have a decent menu, but there are specials every night (which I knew, and ask about), but they also have specials at lunch! (Hey, if you're stuck in a room for 4-5 days, little things make you happy - and we all know, meals are one of the key highlights of the day - right Andy?) They also have things like Gatorade to drink - that's not on menu. Bottom line - ask... They apparently do try to be a bit more flexible for our floor (5), and 8 (stem cell transplants), as we tend to have longer stays.
09:37:15 am, Categories: Treatments, 268 words
Day 120 (Tue) 7th Day Post 3rd 'B' Cycle, 6th Cycle total
Had a so-so night sleep. I was running a fever around 102 last night, so they'd wake me for tylenol, various checks and drugs, and... I'll catch a nap today.
WBC count is still .2. HGB went up to 7.2 (2 pints of blood yesterday). Saw Dr. Goy and Phyllis (Nurse Practitioner), and Goy will try to get me home for Thanksgiving - so long as my WBC counts are up. If they're too low, I'll just end up back here... There is an infection, some strep.. or staph... thing that they'll treat with Vankomycine (I'm allergic to Penicillin), and that should clear it up. The infection is in the Hickman, and in my body, so it needs to be knocked out of the Hickman - which should happen with the delivery of the antibiotics through the Hickman. Otherwise the Hickman has to come out - and I don't want that, not with 2 treatments to go.
fwiw, Phyllis was not as optimistic about release date, she said the WBC's usually come up around day 15-17 (counting from the start of chemo), and that would put me at day 12 right now, and 15 w/b Friday. However, I'm still getting Neupogen, and Goy was going to bump up my dose I think. It'll be what it is....
08:30:48 am, Categories: Treatments, 282 words
Day 119 (Mon) 6th Day Post 3rd 'B' Cycle, 6th Cycle total
Going to work from home today. I have some meetings I have to dial into, but I'll need to get blood drawn, and I may run a temp in the afternoon, so I'm better off being here.
Chris said it last night, this fever, then one more (cycle 8 - if I get one then too!), I can deal with that.
Went to the Dr's, numbers were low, WBC .2, HGB 6.8, PLT 20, so in to the hospital - a private room on the 5th floor - nice.... Getting some blood, some platelets, and some more blood, and then some antibiotic. Hope to be healed up by Thanksgiving.....
Saw my buddy Steve - a fellow MCL'er that I met on my first day of treatment. He's recovering from a battle with pneumonia, that had him in ICU for 8 days. He looks great, sounds great, and has his usual energy - so you'd never know he was hurting recently! Got to see his Mom and Dad (Murray and Barbara) as well, and they're just great people - really nice family.
08:40:04 am, Categories: Treatments, 317 words
Day 118 (Sun) 5th Day Post 3rd 'B' Cycle, 6th Cycle total
Another great day outsdide. We're waiting for Emily to come home to hear all the news about camping!
I feel good, just a little winded after doing stairs, etc - so I'll bet blood taken tomorrow, and I'll have results on Tuesday, but it'll be good to see what the trend is this time. Probably take it again on Wed, as Thursday's Thanksgiving.
I'm still not exercising, taking it ez on the back, which is about 95% better, I just don't want to do anything stupid to it. It was way too sore last time!
Emily came home and had a great time, and we all played in the basement for a while with Pirates!
09:25:57 am, Categories: Treatments, 144 words
Day 117 (Sat) 4th Day Post 3rd 'B' Cycle, 6th Cycle total
Beautiful day out! Alex came over and helped us clean up for the season - re-arrange the stuff in the shed, put some firewood up by the porch, store the table, etc - MANY THNANKS! (I'm stil trying to take it ez on my back, and I'm not supposed to expose myself to too much bacteria, etc.)
Emily went on a Girl Scout camping trip, her first one without Mom, and we got a call from her at night - where she sounded like she was having a great time! (They're in cabins with heat and electricity, so it wasn't that cold....)
We watched 'Iron Giant', a 1999 Disney/Pixar type movie that was really neat - great story/message, and John is HUGE into it.
Feel good, energy level is good. Took a nap during the day for about 45 minutes to try to stay on top of things.
09:25:57 am, Categories: Treatments, 206 words
Day 116 (Fri) 3rd Day Post 3rd 'B' Cycle, 6th Cycle total
Went to see the Dr. today. Good stuff - he's happy with results. My blood counts are good (for post B Cycle). I'll get a PET/CAT next week, as the last one (after the 4th round) still had some 'shmutz' on it. Endo/Colon and Bone Marrow are clean, so it's just the PET/CAT that we need clean now. We talked about follow up PET/CAT scans every 3-4 months after treatment ends in Dec - that'll be great! (We'll do another PET/CAT after the 8th treatment as well.) This was record time for the Dr. appt btw, only in the waiting room about 10 min b4 blood draw, and then about 5 min after that got to see the doc - amazing.
So we're pretty pshyched. Hopefully after the next PET/CAT it'll show complete remission. Aside from that, I feel good, and again, hope not to go into Neutropenic fever this time.
Pete and Lisa watched the kids while we were out. Chris and Pete cleaned up leaves in the am, then Pete and Lisa did more in the PM, and then Pete did the lawn, finishing just after dark fell! MANY THANKS FOR ALL THE HELP!! I can't wait to get back to doing that stuff...
01:07:26 pm, Categories: Treatments, 87 words
Day 115 (Thu) 2nd Day Post 3rd 'B' Cycle, 6th Cycle total
Another good day - even if it is 30 degrees colder than it was yesterday! (Mid November, go figure.)
Need to keep taking the mouthwash to make sure the mouth sores don't appear. It's baking soda and water, but helps to keep the mouth from getting mucositis (sp?), which can be brought on after chemo as your mouth can't fight the basic bacteria that's there. The baking soda helps to neutralize it I suppose.
Feel good - still a little bit of funk, but not bad, getting good work done.
01:03:44 pm, Categories: Treatments, 179 words
Day 114 (Wed) 1st Day Post 3rd 'B' Cycle, 6th Cycle total
Glad to have slept in my own bed last night, and to be back home!
Feel good, just the usual day after chemo funk. Heard that I sounded a bit out of it on 2 conf calls in the am, but I felt fine, may have just been a bit groggy.
Not too hungry, but eating well enough. Put on too much weight. A lot of it seems to be fluids - still drop about 8-10lbs overnight. The 'B' cycle is the one you really need to drink a lot with to flush out the methotrexate. Not exercising has hurt, but the back is getting better, so once that's back to normal, I'll be back on the bike. Taking a muscle relaxant for the back, and using the heat pads still. No pain killers needed.
Highlites of the day - parent teacher conference, classroom observation, and a PTO meeting at night (with some work inbetween!). It's good to get back into the swing of things.
Ironically, was wiped out at night, but took a while to fall asleep - hate when that happens!
09:56:35 am, Categories: Treatments, 242 words
Day 113 (Tue) 5nd Day, 3rd 'B' Cycle, 6th Cycle total
Last chemo finished up around 4pm (Ara-C), so now it's just monitoring Methotrexate levels to make sure I can leave today. ETA is noon-ish, but that may be optimistic. It never seems to go that smoothly. And I need to work out a ride home!
Feel good, on conf calls all am. Another good night's sleep!
Talked to the doc about the timing of Neupogen, and general 'B' cycle effects. (The 'B' cycle is harder on me, and I may end up with Neutropenic fever - where your white blood cells (WBC) are too low to fight bacteria that normally live in your body, and you get a fever.) He said there's really nothing you can do to prevent it, and getting the Neupogen a bit earlier (24 hours after chemo as opposed to 48 hours after) will probably not help. It seems it's a matter of your body being beaten down by the chemo, and there's not much you can do about it. If it's gonna go low, it's gonna go low. You obviously don't want to stress it, but.... I had previously gone with the idea that I'm going to end up in the hospital with the fever - since I did after the second 'B' cycle, and the first one saw me with a mild fever, but I've recently taken a more defiant attitude and I'm determined NOT to end up with the fever! (Mind over matter? whatever, I'll do what I can!)
10:23:15 am, Categories: Treatments, 89 words
Day 112 (Mon) 4nd Day, 3rd 'B' Cycle, 6th Cycle total
Great night's sleep. Feeling good, back is feeling better.
Chris came up and let me beat her at 'Spit' the card game! She's too good to me...
Good day, did some work, etc.
Aunt Joan and Uncle Jim came up and hung out for a while (thanks!), and I went to bed around 9pm, was beat!
Counts look good, actually going up - seems to be due to the steroids. Looks like I should get out on Tues, my Methotrexate level is at .18, it needs to be under .1 for release.
09:43:31 am, Categories: Treatments, 427 words
Day 111 (Sun) 3nd Day, 3rd 'B' Cycle, 6th Cycle total
Great night's sleep. No back pain to wake me up. It's still there if I move the wrong way, but feels much better. I'm on a muscle relaxer (Flexoril - ap?, 3x per day) that I started on Wed pm, took all day Thurs, then only took one on Friday (due to checking into the hospital, and having them check out the meds), and I took all 3 yesterday. I can't take an anti-inflamatory, as you can't have anything that thins the blood while on chemo. Regardless, good night's sleep! just woke up at 4am for the blood draw, and then at 5 for vitals and weight check.
Doing some good reading (trade rags, bike magazines, medical stuff), and on the pc of course. A laptop is essential for these stays. Even if it is connected via dial-up, it's a wonderful thing to have. FWIW, I don't even turn on the TV when I'm here. Just watch the occassional DVD.
Chris and the kids came up, we had lunch in the lounge, and then spent some time outside - great weather! Great to see the kids, and of course Chris - a little quality time like that goes a long way!
They left, and about an hour later Alex, Mom, & Dad came up. Everyone looked well, and they even brought a care package - pecan pie and ice cream! So we had some of that, and I got a slice for dessert later! Good stuff. Another great visit. They left and I nodded off for a bit - after some pre-med I got.
Feel great though!
Saw Pedro leaving today. He just finished up this 2nd cycle, his first 'B'. Looks good! Looks like he did a bit of a haircut, as would follow from the 'A' Cycle, where about 2 weeks after you notice a bit of a thinning taking place, or I did. Best to he and his family!
08:02:56 am, Categories: Treatments, 171 words
Day 110 (Sat) 2nd Day, 3rd 'B' Cycle, 6th Cycle total
Woke up around 3am with more back pain, bot more meds, and that seemed to roll into the 4am blood draw, that rolled into the 5am vitals and weight check. I'll nap today...
All looks good, and they hooked up my methotrexate (1st one is a 2 hour dose) around 8:30am, after some pre meds (cortiosteroid and kytril - both IV). They hooked up the next bag of methotrexate (24 hour one) around 10:30am. So that'll run until tomorrow, then the Ara-C starts.
Chris came up and beat me at Scrabble. But she also brought me home-made chili, corn bread, and iced tea - and of course she was here, so I can take the beating at a board game! The kids are coming tomorrow, so that'll be nice - maybe it'll get warm out and we can venture outside - wishful thinking.
All else is well, just doing the PC thing, some reading, and trying to stay off my feet to heal up the back.
Went to bed around 10:30, no back pain - hopefully a good night!
06:18:09 pm, Categories: Treatments, 103 words
Day 109 (Fri) 1st Day, 3rd 'B' Cycle, 6th Cycle total
Headed off to HUMed at around 9am, got there at 10am, got to my private room - yes private room - on the 5th floor (just worked out that way). I'm just happy that I got in for chemo - they're still backed up with beds, and sometimes have to push people out for several days.
Got my fluids running, and then they hooked up the Rituxan - that finished around 5pm. Methotrexate starts tomorrow.
Did some mails, etc, then watched a movie. Back started to act up towards the end of the movie. Not sure why, but got a pain killer and that kicked in eventually.
06:15:37 pm, Categories: Treatments, 93 words
Day 108 (Thu) 18th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Great day, the kids had off from school, so we went to the beach and took a walk along the water, played on a playground, ate some pizza, and had donuts and coffee (ok, i had coffee), and headed home. It was cool and windy, but just a really nice day, and great to get some fresh ocean air.
Did some stuff at home, and then we watched the Incredibles, the kids love it, and I think Chris and I were pretty glued to it as well (even though we've seen it b4).
08:55:09 pm, Categories: Treatments, 141 words
Day 107 (Wed) 17th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
A quiet day. Did some work on the PC in the am, got some paperwork done - taking it ez on the back. Ironically, time spent sitting it tougher than standing!
Went to the doc for the back, he thinks it's a strain, the muscles are tight on the lower back, and it seems to involve the psiatic (sp?) nerve as well - shoots down the legs a bit. He said the remedy is being horizontal - so 5 days of chemo should do the trick! Also gave me a script for muscle relaxers and Davocet (sp?) for pain. Did the muscle relaxers, and that seems to help, and I'm using the Therma-Wrap - disposable 8 hour heating pad - helps!
Aside from that, all else is well. We may go to the beach tomorrow, as the kids have off, and that's not too bad on the back!
05:23:44 pm, Categories: Treatments, 96 words
Day 106(Tue) 17th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Back's still sore - made an appt with the family doc to have it checked out, that's tomorrow. Tried one of those disposable heating pads today - gets warm just by taking it out of the foil packet. Has a bunch of 'discs' that get warm. Seemed to help.
Chris and her father put a coat of driveway sealer down today, as I was not allowed to do it. THANKS!!! They also did some leaf blowing, but I got to help there.
Good otherwise - still scheduled to go to the hospital on Friday - if there's a bed available.
05:23:47 pm, Categories: Treatments, 21 words
Day 105 (Mon) 16th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Good day, nothing major. Day of vaca, so chores around the house - need to get caught up on some lost weekends!
09:32:27 pm, Categories: Treatments, 213 words
Day 104 (Sun) 15th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Another good day. Did get on the bike this am. Only for 20 minutes. Did 157 avrage heart rate for the 20 mins. Want to got back on tomorrow. My legs felt it today! Weight is still almost the same (204 vs 198), but there's definitely been a bit of a shift. Jeans are a bit tighter, not as strong, etc. I haven't been on the bike as much as I had been early on. Part of it is work, part having a fever etc and not wanting to stress that, part laziness I suppose (not getting up early enough). I need to get back on it. Fall usually takes a bit of a toll on training, so that's part of it.
Had family breakfast (great to be home), church, John had a b-day party to go to so Emily and I dropped off Mom and John, and we went to do some shopping and then had lunch at Friendly's, picked up Mom and John, then went home. I went to Home Depot and the auto parts store to pick up some supplies for this week's chores... Dinner and hanning out with John in the evening (Emily and Chris went to a Girl Scout sing-a-long). Stories in bed with the kids, and then relaxing...
What a great weekend....
08:32:59 pm, Categories: Treatments, 274 words
Day 103 (Sat) 14th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Delayed entry - busy weekend! Another good day.
Was going to get on the bicycle this am (for a trainging ride), but opted to stay in bed with the family for a great morning of four of us in a queen size bed. You just can't beat that.
Went to an open house for John's nursery school, then to Lamberville to the Flea Market to try to find a toy dealer that's supposed to specialize in McDonalds toys - no luck, but there were some other big events that some of the dealers may have been at. So we stopped in Lambertville to check drive by Joe & Michelle's house - very nice!! They weren't in, but we left a v-mail... Then we ate lunch at the Full Moon. The decision to eat ther was partly based on the fact that they served grilled cheese sandwiches for the kids! Good place though.... Then home for some chores.
Finally we went to Alex's to try out his new chimnea - really cool! It's a steel one that provides 360 degree access to the fire (through a grate). Made smores, had hot chocolate, etc. Great time, and then back home. The kids got to bed too late... I took the bike there (as I went early to help put it together), and it was a bit chilly on the way home. That, and some fog had settled in, and the deer were out, so a very alert ride home. That, and my back's still bothering me, and the bike was NOT the most comfortable. Need to get the back healed up before taking it out for any rides...
A great day!
09:27:39 pm, Categories: Treatments, 33 words
Day 102 (Fri) 13th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Delayed entry - busy with work. Another good day. Feel back to normal, but still going to bed early to get lots of sleep. Looking forward to the weekend, and some vacation next week!
09:27:39 pm, Categories: Treatments, 22 words
Day 101 (Thu) 12th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Delayed entry - busy with work. Another good day. Feel back to normal, but going to bed early to get lots of sleep.
09:27:39 pm, Categories: Treatments, 38 words
Day 100 (Wed) 11th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Delayed entries, busy with work... Good day - back to normal for the most part, just a bit tired at night, so I go to bed early. Must have done something to my back again - it's sore a bit...
08:42:15 pm, Categories: Treatments, 207 words
Day 99 (Tue) 10th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Back in the office - and good.
Diwali (Indian feastival of Lights). GREAT home made treats, good to come back on a day like that! Bunch of meetings, catch up with some friends on activites, etc. Felt good all day, just a little tired at the end.
Can't believe it's November already!
I've posted all my CBC counts under 'Background', as I don't know where else to post them. I'll try to keep them updated on a fairly regular basis. You can see there's a downward trend, where the average is getting lower - all to be expected. The next 'B' cycle should test the limits again, and I expect I'll be getting some more blood after it. I've had 8 pints of red so far (6 after the last 'B', and 2 after this past 'A').
There's a fellow MCL'er in Chicago - Cory, that's 39 (1yr my senior), who's body seems to be taking this a bit better than mine. He had some blood after 5, but I don't think he's had as much as me. So - again - results vary by individual. Still - I was on the stationary bike during the last 'A' cycle for 3 of the days - so even though the body needs some help, you can still work it pretty hard!
07:25:02 am, Categories: Treatments, 225 words
Day 98 (Mon) 9th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
In the Hospital with a fever.
Fever's been down since yesterday am (nothing over 99), so I'll be getting out today. I may get another pint of red depending on the CBC's from this am, and I'm hoping to get my chemo push today (Vincristine). I should see my doc (Dr. Goy) in the am, as he has rounds. Hopefully I'll get out in the afternoon, and get home for the evening's activities!
Feel good, GREAT day outside, I'd like to get out to take advantage of some of it. It's weird being inside for several days straight.
Fever stayed down, got my Vincristine push, another pint of blood, and I'm all set to go home. Will hopefully meet up with the kids to go trick or treating while they're still out.
Got home as the kids were coming in - so they were still in costume! Checked out the candy, and may have sampled a bit.... Hung around for a while to see them, and then stayed at my parents to stay away from some of the germs bouncing around the house - need to stay healthy.... It's tough, want to see the family, but also want to stay out of the hospital.
Many thanks to Alex for the trips back and forth to Hackensack.... and for getting me home in time to see them in costume!
09:01:58 am, Categories: Treatments, 222 words
Day 97 (Sun) 8th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
In the Hospital for a fever.
They feel it wasn't really Neutropenic fever, as that's when your WBC's are .5 or lower. Mine were alway at least 2.5, and I'm at 4.6 now (Neupogen shots helping). So it was probably some bug that I got, and either the antibiotics are helping, or I'm just fending it off. The cultures came back negative, so it seems there was nothing bacterial going on.
My fever seems to have broken, I had a 102 last night, but at the 4am vitals check today, it was 98.4, and 99 when I woke up - but I had too many blankets on when I woke up, and was hot.
My other counts are dropping still (still going through the Nadir - day 8 today), so my HGB is at 6.8, and Platelets at 94. I'll be getting a unit of blood today to boost the HGB, so that's good. Ironically, I feel better today - not that I felt bad before, I just feel better - more energy, more alert, etc.
I need to see if I can get my chemo push while I'm here, and what the determining factors are for that. I think I'll probably be here until tomorrow, to make sure the fever is gone, and that'll hopefully enable them to give the chemo as well. hopefully....
However, I need to be home to see Halloween tomorrow!
08:55:58 am, Categories: Treatments, 95 words
Day 96 (Sat) 7th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
At the Hospital for 'Neutropenic Fever'.
Feel the same - actually feel pretty good, it's just the chills that kick in towards the evening, and then I get a bit tired. Aside from that, all else seems well.
I was supposed to get my Vincristine and Adrimycine pushes yesterday, which obviously were held off, so I'm hoping I can get them while I'm here - if my counts are good, etc. Not sure what the other qualifiers will be.
Since I'm on the 5th floor, everythings good - comfortable with the care/staff, and know my way around.
08:43:04 am, Categories: Treatments, 327 words
Day 95 (Fri) 6th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
At the Hospital - for 'Neutropenic Fever'.
Got to the ER around 1am, the doc had called ahead, so they new about me. Regardless - they're really good with getting you from the waiting room into the ER. The waiting room is virutally empty, but the ER is a very active/swamped place. Got a separate room in the ER - nice... Got blood taken (from a new IV they inserted - the onc nurses tell me the ER's really not good with the central line catheters - it would be much nicer if they could just take from there instead of sticking you again!), chest X-Ray, etc. They started the Vankomycine IV antibiotic almost right away, and another one that I need to get the spelling of. I moved from that room to another room in the 'expansion' area of the ER (private room again), and we stayed there until around 5pm, when I got moved to the 9th floor for about 5 minutes, and then to the 5th floor (yes!). We got all setup on the 5th floor and felt at home (unfortunte/fortunately....).
Alex was great, staying the whole time, sleeping upright in a chair, etc - making sure I was getting good care. Many thanks... Chris was at home with the kids, and now sounds a bit like Mickey Mouse, as she has close to no voice. She did go to the doc, and they think it's either allergies or a virus, but she has some stuff to help clear it up.
I went to sleep around 9:30pm, just beat from the day... Slept pretty well, had a fever on and off, complete with sweats, etc. Got Tylenol at 4am or so as I was over 101. I seem to be having a tougher time kicking the fever this time, but then, last time I may have been getting a lot of Tylenol as a pre-med for the infusions I was getting, and that would have helped knock the fever down.
09:10:08 am, Categories: Treatments, 380 words
Day 94 (Thu) 5th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Woke up a bit later than usual, as planned - to try to get rid of this fever. (Also got up about every 2 hours last night, so needed to rest up a bit.) Felt pretty good, going to work from home today to take it easy and not subject myself to too much (but like I've said, there's illness at home, so... I'll wear a mask when needed).
Temp seems to be staying at the 99 range (but was 98 when I typed this!- good, as I'm usually low) - I'll just watch it (as you're supposed to do for the 10 days following chemo anyway.
Have a Dr. appt tomorrow to get my 'pushes' anyway, so I'm hoping I still get those, and of course I'll get a once over, AND I'd like to hear how the PET/CT/Colon/Endo tests look - to the Dr. I've read the Colon/Endo, and it says there's no sign of MCL, that it's in remission. Just need to get the same from the PET/CT!
Started to get chilled in the afternoon again (around 3pm), and the temp went up some more. Ended up just over 100, so took 2 Tylenol to do the same thing I did on Wed. They didn't have a reducing effect, but seemed to keep it at that level. Rested up on the couch, keeping warm (as I was chilled). At some point, the temp was 101 and change, and we called the doc. Given we had an appt the next day, he said we could do the Tylenol every 3 hours, but if I started to shake (overly chilled), or feel bad, to call back. The temp slowly crept up, and hit 102.3 around 11pm. Called the doc again, and he said to come on in... Called Alex, he came over and we left for the ER just b4 midnight.
Update on everyone else with infirmaties:
11:12:41 am, Categories: Treatments, 257 words
Day 93 (Wed) 4th Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Good day, stomach's still not quite right - more annoying than anything. Just had some cheese and that was good! Dropped some weight last night (yeah, up every 2 hours or so.....) They pump you so full of fluids in the hospital to flush you out that you're pretty bloated when you leave. My face has been fairly puffy, despite only being up about 5 or so pounds. (202 this am, usually around 198)
Got a great note from Chris (my lovely wife) in the comments section today. It's all hooey, she's the one really keeping this all together (scheduling, motivating, etc), I'm just going throught the paces! Love ya hon...
Got my CBC results, WBC 34, HGB 8.9, and PLT 299 - so that's all good.
Ended up with a slight fever in the office, 99.2, no biggie, but after going home and taking a nap (feeling a bit tired and chilled), it went up to 100.8 - while under lots of covers... Rested some more, took off some covers, lost some of the chill, and it went downt to 100.5, so we called the on-call (Dr. Shu). Based on my good cell counts it doesn't seem like Neutropenic fever (from what I understand of it - my WBC counts are fine - I should be able to battle infection), however we are battling sicknesses in the house - normal fall stuff....
So.... Take 2 tylenol, watch the fever, if it goes up, call back/come in. Watched it, and it finally went back down to 99.3 after about an hour, and stayed there most of the night - without any more Tylenol,
08:45:48 am, Categories: Treatments, 78 words
Day 92 (Tue) 3rd Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Feeling better stomach wise today. It's usually 2 days that it takes for it to wear off (how much of that is mental, I'm not sure).
Will get CBC's today to see what the levels look like, but won't know for a day or so.... Always curious to see where they're at. Feel good though. Haven't been on the bike since Sat, but felt good huffing it in NYC yesterday, only did a flight of stairs at a time.
08:40:53 am, Categories: Treatments, 128 words
Day 91 (Mon) 2nd Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Went to NYC for meetings all day. Still feeling the stomach thing where I don't know if I'm nauseas, hungry, etc. Just annoying, no big deal. Took an anti-nausea pill at some point, and ate just fine throughout the day. Did not want to drink any water (and I usually love water), but drank quite a bit of hot tea, etc. trying different things seems to help. A friend tells me it seems like I'm pregnant....
Held up well, took a nap on the train for about 15 min on the way home, and just took it ez in the evening. We've got some colds floating around the house right now, so we're watching that.
All else is well! Good luck to Kristine on her knee (ACL) surgery tomorrow!
05:41:12 pm, Categories: Treatments, 30 words
Day 90 (Sun) 1st Day Post Chemo, 3rd 'A' Cycle, 5th Cycle total
Good to be back home... Feel good. Stomach's questionable - just don't know what I want... usual stuff. Church, chores, a little tired, spend some time on the PC...
08:20:45 am, Categories: Treatments, 262 words
Day 89 (Sat) 4th Day, 3rd 'A' Cycle, 5th Cycle total
Had Denise last night, she took blood at 4am, and I didn't know... The vitals and wieght from the nurses asst was a different story, and Pedro's pump kept beeping, and he felt bad - nothing you can do, just like a doze on an alarm. Such a nice guy - we had a great conversation this am.
Feel good, should get out tonight - last chemo finishing now, vincristine and adriamycin push tonight. Need to have the Mesna complete - protects the kidney/bladder - and it's time sensitive, so it can't be rushed. Looks like an 8-9pm release. At least I'll be in my own bed tonight, and at home in the am for Sunday breakfast, etc! Thanks to Alex for the ride home!
Did the bike for 50 minutes, 159 average. Did 153-158 for most of it, and spiked to 170 for a couple of sessions. Went for more distance...
Went to dinner at an all you can eat meat place - nice... Wasn't sure if I'd have an appetite, but I did well!
01:25:49 pm, Categories: Treatments, 346 words
Day 88 (Fri) 3rd Day, 3rd 'A' Cycle, 5th Cycle total
Good 'night' sleep, then of course the 4am blood draw - with full lights (Denise - on tonight - comes in without any light and does it - she's awesome!), then at 5am, weight check, then something else at 6am, vitals (??), dunno. There's gotta be a be a better way!
GREAT NEWS - Path report on the colon/endo biopsies came back clean! So it looks like it's working. Not sure what this means in terms of a CR yet, but once we get PET/CT results, etc, we'll see.... Regardless, it could mean I get a pass on the next round of colon/endo tests, bummer.... ; )
Conf calls, work, mails, Chris came in and we synched up our schedules for the rest of the year. We're cancelling a trip to disney that we had planned (pre-cancer), for November. Just figured it wasn't the wisest thing, even though it was post A cycle - which isn't bad. However.... We were there last year, and we'll do something in the spring instead!
So now we moved the chemo schedule around for the rest of the year, and it looks like I should be home for Thanksgiving (barring neutropenic fever), John III's bday, and Christmas! And s/b done by New Years!
Did the bike for 37 minutes (had to stop for a conf call - that got delayed - bummer), avg of 159. Did 155 for most of it, doing 173 for about 10 minutes. Again - feels great to do. Legs actually felt it a bit - too out of practice - it's been about 3 weeks since this session...
01:57:10 pm, Categories: Treatments, 201 words
Day 87 (Thu) 2nd Day, 3rd 'A' Cycle, 5th Cycle total
Good night's sleep! Crashed around 10:30pm....
Feel good, getting my meds, etc. My roomie (Pedro - almost 75 years old) is starting R-HyperCVAD too, so I created an entry under 'Background' that has a 'what to do/expect' entry for newbies. It's based on MY experiences, but it's something.
Doing work, etc.
Did the bike for 30 mins, avg heart at about 168, and avg rpm around 76 or so. I have the resistance all the way down on the bike, and I focus on heart rate for training. I got up to 187 at the end - just for kicks, but kept it at the 168-174 mark for the most part. I want to get on later if possible, at a lower rate, longer duration. Had to cut short this am for a conf call. Thanks to Pat McGeever for his comments on the blog about my numbers! Still feel good doing it, and I do like spiking those numbers a bit - but I'll do it in more of an interval pace than I've done previously....
Alex and Andy stopped by - great to see them - thanks... alex brought candy - good and bad. oh, the candy tasted good, it's just not what i should be having.... no complaints though!
11:41:24 am, Categories: Treatments, 567 words
Day 86 (Wed) 1st Day, 3rd 'A' Cycle, 5th Cycle total
Back feels better today. Spent some extra time in the shower with hot water on it - stretching it a bit.
Got to the hospital around 9:20am, got right to the floor, got a window bed with a great roomie - Pedro, he's from Argentina. Real nice guy that had CLL that morphed into Richters (not sure wha tthat is - I'll look it up later). Heck of a nice guy though, practicing my Spanish a bit with him, and he's tolerant - maybe even appreciates the attempt.
Very happy to be back on the 5th floor. The other staff was good, but I'm much more comfortable on 5...
Dr. Goy was making rounds, so he gave me a quick once over, was aware of my trip to the ER last time, and seemed pleased with the results of the endo/colon tests - may not have to have a test after round 6, depending on the path reports this round. Yes, you can imagine how upset I'll be if I don't have another colon/endoscopy. Well, I'll try to make due....
Met with one of the infectious disease docs today - I honestly don't remember seeing her last week, must have been Friday when I was in a fog big time - sleeping most of the day... She told me the bug I had was the 'corny bacterium' - a nothing bug. Even if it was in in the catheter, they don't remove it for that one. They treat it with antibiotics to the catheter, etc. When I took the Vanko, I would switch ports on the catheter, to treat each side...
Doing mails, etc. beautiful day out - at least I can see it... It is weird going into the hospital, and then not getting outside for 4-5 days. Nice when you finally do. (They do have an outside area that you can go to if you're not hooked up to chemo, and I will take advantage of that if the opportunity presents itself. Do a little reading, etc....)
Heard a teleconference (for about 2 hours) from John P. Leonard, M.D., associate professor of medicine, Weill Medical College of Cornell University; and Steven H. Bernstein, M.D., associate professor of medicine, University of Rochester School of Medicine. The website for info on it is: http://www.lls.org/all_page.adp?item_id=65748. They talked about advances in lymphoma treatment, talking about Rituxan, Zevalin, etc. targetted treatments, etc. It was pretty good. Nothing too intense, but there's good advances being made, and targetted therapies are quite interesting. That's the stuff that attacks the specific cells, as opposed to just killing everything. One thing that was intersting was that Rituximab - a wonder drug of sorts (a monoclonal antibody - I think), helps to kill cells, but they're not sure exactly why. It may help to tell the cells to die (cells have a timer telling them to die, and cancer cells have a broken timer), or it may create pores in the cell, causing stuff to get in them, and them to bloat and die, or some other 3rd way that I forget.... regardless, it seems it works, but they don't know the exact mechanics of it - interesting...
10:11:17 pm, Categories: Treatments, 223 words
Day 84 (Tue) 19th Day Post 2nd 'B' Cycle, 4th Cycle total
Good day, early meetings, out to lunch with a couple of 'old' friends from Merrill (Thanks for lunch Walt and Bob!). Funny watching the over 40 crowd read menus without glasses - from 2-3 feet.
There's a fun time for you - take someone (over 40, that's never had Thai before) to a Thai place, making sure they don't have their reading glasses, and have them order something. Sure, the name of the dish is big enough, but the description is wayyyy too small. And you really can't make heads or tails out of the title..... Yeah, we all got Pad Thai - love those noodles!
All else is good. Back's still sore, a few tylenol today, and even a percocet tonight - but I did some stuff outside; nothing major, but may have just been enought to annoy it. Yeah, never learn...
Hospital tomorrow for round 5 (A cycle), which is a piece of cake compared to the B. The cycles themselves aren't bad really, it's more the after effects of the B that get me. Wanna get in, and get out - hopefully on Sat (4 days). Want to get on the bike in the hospital, the last time I was on was the last time in the hospital! I'll talk to the doc about the back, and of course see what he thinks about the PET/CT/Endo/Colonoscopy tests!
04:45:51 pm, Categories: Treatments, 332 words
Day 83 (Mon) 18th Day Post 2nd 'B' Cycle, 4th Cycle total
Woke up hungry! ok, not that bad... no coffee, no nothing, not allowed drinks even after midnight prior to the colon/endoscopy.
Had the procedure. Different anestesia this time. Had Propofol at the last one, Fentanyl and Versed at this one. Propofol is like a switch; one minute you're awake in the OR, the next minute you're awake in the recovery room. No drowsiness at the onset, nothing - just out. Fentanyl and Versed on the other hand leave you awake, but in no real pain. I could see the pics on the screen as the Doc performed the procedure, but really didn't have any pain. Minor discomfort if anything, and seeing the pics seemed worth it! I was even talking to the Dr., can't tell you about what, but I know I was talking. That's the weird part with Fentanyl and Versed, you don't remember everything - leaves you with a bit of amnesia. I had it once b4, for my colonoscopy in 2000 - same effect. Not sure which I like more. I really like being out, but then, seeing the pics real time is kinda neat. Had this one at St. Francis hospital, the staff was nice, and everthing went well.
The really good part - the pics looked MUCH better. No polyps that the doc or I could see. She took lots of biopsies (I remember her taking those - watching them on the screen). And we'll have those results in a week or so. But the pics looked really nice (sorry, not gonna share those on the site - although you'd easily mistake them for a trachea or any other internal pics).
Got home and ate. Had a cheese steak and chips - and some pumpkin pie. Much better now....
All done with my anti-biotic, so no more of that. Which is nice. It wasn't that bad, just has you hooked up to a bag/pole for just over an hour - which isn't great. The back's still store, but maybe getting better.
Back to work!
06:13:30 pm, Categories: Treatments, 153 words
Day 82 (Sun) 17th Day Post 2nd 'B' Cycle, 4th Cycle total
Prep day for colonoscopy, so no breakfast, lunch, or dinner to speak of... Not fun. The prep is by far the worst part of the whole procedure!
Went on a Hayride and picked pumpkins, etc at Windsor Farms - great day for it, and a great time! Took the kids over to Grandmom and Grandpops, and Alex was there doing the lawn, so we got a chance to all catch up - nice.... Chris meanwhile did the lawn, and did some fall prep work (taking in some of the ornaments, etc.) - thanks hon!
Did some more Halloween decorating, and Chris and the kids are making cookies (which I WILL eat tomorrow).
Have the colonoscopy, endoscopy tomorrow, and then work from home (depending on sedation!). Seems like an extra long time between cycles, as I'd normally go in today, but since Dr. Goy is in Europe, I don't go in until Wednesday. Enjoying the extra time....
06:09:06 pm, Categories: Treatments, 40 words
Day 81 (Sat) 16th Day Post 2nd 'B' Cycle, 4th Cycle total
Good day, back's still sore. Taking Tylenol to help that. Still feels like I just pulled something.
Went to my nephew Derek's Bday Party - had a great time! Then Sat night mass, and stuff around the house. A good day!
06:59:23 am, Categories: Treatments, 283 words
Day 80 (Fri) 15th Day Post 2nd 'B' Cycle, 4th Cycle total
Good day... Back pain is still there, but the pharmacy doesn't think it's related to the antibiotic. I probably did something to my back. I haven't excercised in a couple of weeks, and I really need to get back on that - may have weekened the trunk and opened myself up for something there - that'll teach ya!
Still taking the antibiotic, only bummer is that it drips for an hour, which of course means I sit by the PC and do mail, etc for an hour in the am (usually do them for about half an hour, this cuts in a bit). Suppose I could get them while on the bike...
Have a consult today for my endo/colonoscopy. Ironically, I've had a number of these (tests), and each with a different doctor, due to oncologist preference, insurance coverage, etc. I suppose I would have liked some consistency so one doc could do a compare, but the reports will have to do. FWIW, these tests are no big deal. They put you out, and when you wake up, you're in the recovery room. Prepping is the worst part (no eating) - so that'll be Sunday. Which means Saturday will NOT be a day to eat lightly! Consult went well, all set for Monday.
HUGE Bright spot today. Had a breakfast meeting today with Andy and Guy (2 good friends and of course collegues - it was a working breakfast!). Guy got me a signed picture of Lance Armstrong, via the LAF (Lance Armstrong Foundation). It's a great picture, with Lance bearing down on the bike, grimacing in pain - just awesome! Many thanks, truly an inspirational picture. Guy and Andy have been incredibly supportive, and I'm truly appreciative...
06:53:12 pm, Categories: Treatments, 178 words
Day 79 (Thu) 14th Day Post 2nd 'B' Cycle, 4th Cycle total
Went to NYC today, felt better doing the stairs - no doubt due to the 6 new pints of blood since the last visit!
Still have lower back pain - like I did something to it, but we're going to check with the pharmacy to make sure the antibiotic doesn't have anything to do with that. Better safe then sorry.
Chris contacted the Infectious Disease doc's at the hospital that got involved when I was at the ER - he need to sign off on me b4 I can go for the next round of chemo. They found that the culture may have been something topical, and the antibiotic should take care of anything and I'm good to go for the next chemo round! - good stuff, didn't want to delay that. Current schedule has me finishing this year, and I'd like to keep that schedule!
Got great news today from friends or ours that had triplets (Guy and Tracey), and Tyler and Arianna are at home and cute as can be, and Peyton will be home soon! Thanks for the great news!
07:05:56 am, Categories: Treatments, 257 words
Day 78 (Wed) 13th Day Post 2nd 'B' Cycle, 4th Cycle total
Taking the antibiotics is not that bad - have to allow an hour+ sitting around waiting for them to go in, so that's a bit annoying, but beats a fever!
Feel good, today s/b an uneventful med day (no Dr. appts, etc), so I'm happy to get caugh up on some work during normal hours. Chris has been great scheduling a host of Dr. appts, and given my work meetings, that's no easy chore (Thanks Hon!). It's probably one of my greatest points of frustration - trying to make all my meetings, while trying to get on the calendar of doctors that obviously have limited time - as they're all specialists. We inevitably clash on schedules, and Chris reminds me that health is the first thing I need to worry about. I know this, but you sometimes get wrapped up in all the other stuff. The other stuff I also feel is a tremendous therapeutic benefit.
Good rest of the day, lots of work to do, etc. I can do lots of work away from the office, but it's definitely not the same as being in the office!
Have some lower back pain, feels exactly like I pulled my hurt my back by lifting something incorrectly. Can't recall if I did - don't think so, but... The Neupogen s/b wearing off, so not sure that that is. Ironically, another guy in the office has the same pain - and said his brother does too! Not sure what that's all about.
Doing the IV antibiotic thing, etc. Have NYC meetings tomorrow.
07:25:21 am, Categories: Treatments, 411 words
Day 77 (Tue) 12th Day Post 2nd 'B' Cycle, 4th Cycle total
Got up, showered, doing the Antibiotitc Drip, Alex s/b here soon to take me to get my PET/CT scan done (thanks!). Didn't get up early enough, so I think I'll be finishing it in the car, but I don't think that's an issue - it's pretty convenient - probably hang the bag from a coat hook - that'll work!
Have a quick Dr. appt after the PET/CT with another onc from the practice as a follow up, with a CBC to see how I'm doing.
Feel good. Temperature's been fine. Eyes have been a bit dry - that's a side effect of chemo, just starting to experience it though. Got some Murine eye drops for that.
Thanks to Janna and Carlos for a cool blanket from Rituxan (one of the newer wonder drugs that's been used on me to fight MCL). Janna and her Mother did a cancer walk recently and they got a blanket as one of the event gifts - and she passed it along to me - I'll be sure to use it in good health! She and Carlos also sent along a really nice framed inspirational message (I'll post part of it under Personal Note later) that we have up in the kitchen now. Thanks for the messages guys, you two are awesome.... Looking forward to some good get togethers in the new year (when I can try to keep up with 'Los!).
10:06:16 am, Categories: Treatments, 84 words
Day 76 (Mon) 11th Day Post 2nd 'B' Cycle, 4th Cycle total
Glad to be back at home - much better night's sleep....
Got up, got some breakfast and ate that while getting my antibiotic IV drip and doing a conf call. The drip ran for just over an hour (you apparently want it to be an hour+, not under, or you can get some side effects).
Feel good, will work from home today, just to get back to normal. Have a PET/CT scan tomorrow, and a visit to the Doc's office to check levels, etc.
11:37:53 am, Categories: Treatments, 545 words
Day 75 (Sun) 10th Day Post 2nd 'B' Cycle, 4th Cycle total
Had some bone pain last night in the knees, from the Neupogen presumably. A couple of Tylenol took care of that. Tood other than that.
Alex and I watched the Guns of Navarone (never saw it b4), good old war movie. (Thanks to Alex for hanging with me into the evening..., Chris got to spend a good evening with the kids - everyone in our bed!)
Got more antibiotic this am, and I'm waiting for Dr. Rowley to do rounds and check me out. There was no order for CBC's this am, so they'll have to draw blood, run CBC's, and then see if I should be released. I'd like to go home today, even if it means an antibiotic IV pump for a couple of days. I can deal with that.
GOT THE GO AHEAD TO LEAVE!
WBC's are looking much better, HGB's are back where they seem to live during chemo. Platelets are still way low, but should bounce back. I need to setup an appt with the dr on Tuesday following my PET/CT scan, just to review numbers, etc.
Had a nurse come to the house to show us how to hood up the IV antibiotic (the Z one). Pretty ez. Comes with a pole to hang it on, bags of antibiotic, tubes to use (you use a tube 2x), give the antibiotic every 12 hours, etc. 8 days of treatment, normal antibiotic course (plus the couple days in the hospital).
One thing we've noticed, the 5th floor oncology unit is awesome. They all know what to do with cancer, etc, I have the utmost confidence in them. A couple of the nurses I've had on this floor were really good, but some I wasnt' as sure of. You need to watch what's going on. One nurse was going to flush my line with Heparin first, then Saline. We paused her (because I had enough heparin in me at the time - so we didn't need it), and she just used Saline, but I asked another nurse what the proper order is. It's Saline - to flush the line, and then Heparin to prevent clotting. You need to watch what's going on, and you can question them doing their jobs. (I later found out that the flushing of a triple lumen is different than the double lumen that I have - but still - question!) Also, I'm not sure of the term for the unit I'm in, but I assume everone's pretty sensitive to exposure (private rooms, etc), but there's tremendous discrepancy as to how people come into the rooms. Some come in with masks, gloves, and protective gear each time, and won't leave the room once they've donned the gear, others walk in with no mask, gloves, or gown. I don't know if the first group is overly protective or if the latter is too lax. (But the first docs from the ER were very explicit about keeping me away from any possible infection - this may have relaxed as my numbers are increaseing, but I still have the initial words in my head...) This could all be minor stuff, but it makes you wonder a bit - and it certainly makes me want my 5th floor!
12:45:19 pm, Categories: Treatments, 364 words
Day 74 (Sat) 9th Day Post 2nd 'B' Cycle, 4th Cycle total
Feeling much better today - great sleep (Benadryl induced!). Chris slept over, by my side, on a pull out chair bed that she said was reasonably comfortable. Thanks hon.... Alex s/b coming up later to check in. Dad's doing better - talked to him today, and he's in no pain, and should be going home. His potassium levels are low, so they're monitoring that.
Back to me:
Talked to Dr. Rowley (another doctor in the practice, he's the chief of stem cell transplants) today, and he's optimistic that I could be out of here tomorrow. He seemed generally pleased with my progress.
I had cultures drawn on Thursday evening to see if there's infection in me, one culture from the Hickman line, one from a hand vein. One of the cultures seems to be growing something, so that could mean more anti-biotics, but they could be administered at home, via the Hickman. They have small pumps that fit in fanny packs and you can be mobile with them.
I'll be getting one more pint of red today, just to bring me up a bit more (he said I'm a big boy, one's needed for one leg, one for another....). That will bring me up to 6 pints for the week - half of my blood! Amazing....
The obvious question is, will this happen again next B cycle? More than likely. Seems that the cumulative effect of the B is pretty strong, and if it continues, I'll get low levels again next time. There's not much you can do to prevent it, just keep an eye on things, etc. Chris was concerned about hours in the office, NYC, etc. and the docs really don't feel that's a contributing factor. It's more the chemo, and how my body reacts to it. Obviously, I need to keep my exposure to infection down, and be smart, but I don't need to live in a bubble.
Hey, it's been good so far, so a couple of tough B cycles is doable!
Saturday I got:
08:53:35 pm, Categories: Treatments, 924 words
Day 73 (Fri) 8th Day Post 2nd 'B' Cycle, 4th Cycle total
Started off the day (12am) in the emergency room of Hackensack University Medical Center. Went from one of the standard curtained rooms, to a small private room (where Chris got to sleep in a dentist-type chair). We were there from aroun 1am-5am, then to another private room down the hall - a bit larger and nicer, then to another even larger private room down the hall - and finally to the promised land - the 9th floor. Floors 5 & 8 are the oncology floors, with 5 being standard onc, decent rooms, usually double occupancy, and in need of some updating. The 8th floor is for Stem Cell Transplants - where you can be there for 25 days or so. I've never been there, but they tell you there's flat screen tv's, internet, etc. However, you really don't want to be there... The 9th floor is the same, but it's not dedicated to oncology - its general purpose, but it's the same setup as 8. Flat screen TV (42" I think), internet connectivity through the TV, but it's a cludge, so I'll use the PC. Generally nicer accomodations.
Chris stayed all night with me, Alex stopped in last night to check in, and then returned to day to spell Chris. He's still here wit me now, and then Chris (after getting some sleep, etc) will come back and stay the night. She likes to make sure she's here to monitor me, etc. She's the one that noticed the hive from the platelets first - so there is definite benefit to here being here (aside from the obvious).
In related news (pun intended), Dad got the rest of his kidney stones removed surgically today (another 12 or so), and he's staying over at the hospital one for night for observation. His levels (potassium, etc) were low, so he's getting taken care of for that as well. Emily mentioned something about the men falling apart - she has something there....
While on this floor either I need to wear a mask, or my visitors do; visitors also need to wear a yellow protective gown. All to keep the possibility of infection down. I'm not to touch anyone, or have anyone touch me. Surgical gloves are used, etc. Serious stuff to keep the risks down.
I've gotten 3 pints of blood so far. I'll be getting 2 units of platelets (i started getting 1 b4, but developed 2 individual hives, so they stopped it, and they were going to check to see if there was anything that should be causing an allergic reaction.
I've gotten 2 types of antibiotics so far (Vancomycin and another). I get pre-medicated with Benadryl (IV) and Tylenol 650mg by pills orally.
My temperature is back to 98.4, with is pretty normal for me - I tend to run cooler.
I just need to get my numbers back up. At 12 noon today they were:
I have a couple of sores in my mouth, one on each side of my tongue - they're small black spots, nothing major, but a bit tender - make talking a little annoying. And there were some others, but tongue ones are the ones that are I don't like! They gave me something to swoosh around in my mouth that helps to numb them a bit, nystatin or something. That's all part of the mucositis (sp?) that can take place post chemo, especially on the B cycle. The mouth has lots of bacteria, and the chemo breaking down the bodies ability to fight infection can cause the mucositis.
I feel good overall. I slept most of today, partly because I didn't sleep well last night, and party from the Benadryl IV. Felt great to sleep. Right now I feel almost 100%. I have a slight cough now and then, more of a tickle. I had a chest x-ray overnight, and that was clear, and all breathing checks they do are fine, so it's probably just that, a tickle...
Bottom line - Chris says now we know why this is the B cycle, the B is for Boss, it's the Boss. I had a fever last time, it went to 100.4, but went back down. Given that chemo is a bit of a cumulative effect, it makes sense that this one would be tougher. Ironically, I had felt quite fine prior to today. The cycle itself was a piece of cake, no hiccups like last time, etc. However, the after effect was pretty intense this time. I talked to the docs about whether or not my activities (trips to NYC, etc) played a part in this, and they felt they didn't. It was more likely just the chemo lowering my levels. However, I know next time that I may want to take some more care to keep myself less exposed to anything, etc.
Friday I got:
- Aztreonam (AZ-tree-oh-nam) is an antibiotic that is used to treat infections caused by bacteria. It works by killing bacteria or preventing their growth.
Aztreonam is used to treat bacterial infections in many different parts of the body. It is sometimes given with other antibiotics. This medicine will not work for colds, flu, or other viral infections.
- 1 pint of Red Blood
09:56:34 am, Categories: Treatments, 1139 words
Day 72 (Thu) 7th Day Post 2nd 'B' Cycle, 4th Cycle total
Went for a cholesterol check this am. It's something a group of us do quarterly or so - we started it when we started doing Atkins about 3 years ago, and wanted to see the impact. During Atkins (not on it anymore), my cholesterol got better. HDL (good) was up, LDL (bad) was down, Tri's were great, all good stuff. We then go out for a big breakfast at a local diner, omelletes, usually with lots of meat, etc. Did that this am, ended up just being Bax and me, then went to Bob Evans. I had my best scores ever. I have to thank whomever gave the blood, as it obviously wasn't my work. I've not been excercising as much, I've been eating whatever works - weight's basically flat, and my total number was 200, but good was 71, bad was 116, and ratio was 2.8 - which is really good. Maybe chemo impacts it? Dunno, there's too much going on right now to make a good study I'm sure, but bottom line, it was good - and I'll take the good news!!
The day started to turn a bit. I felt a bit warm in the afternoon, checked, and the temp was 99.5. It stayed there for a bit, so I went home early (left around 4:30 or so) and then took a nap at home. Temp got up to 101 and change into the evening, so we called the on-call (Dr. Segall) and he suggested we get to the ER, as neutropenic fever seemed to make sense, given how many days away from chemo I was, etc.
The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections.
Neutrophils (pronounced NEW TROH FILS), which surround and destroy bacteria in your body; and
Lymphocytes (pronounced LIM FOH SITES), which are the key part of your body’s immune system, and defend against viruses.
A third kind of blood cell, the platelet, helps your blood to clot.
What is Neutropenia?
Neutropenia is a blood disorder that can affect anyone. Some people are born with it. It can happen after a viral infection. In some cases the cause can be a side effect of a drug, or exposure to certain poisons. People can get neutropenia when treated for cancer with chemotherapy drugs. Sometimes it happens for no known reason.
Blood is made up of billions of cells. There are many different types of blood cells, but most of the time you hear about two kinds - red cells and white cells. There are more red cells than any other type of blood cell. They are very important as they carry oxygen from your lungs to all parts of your body. White blood cells are just as important, but for a very different reason. One of their jobs is to protect you from infection. There are several kinds of white cells. Each has a special function. The most common ones are:
Neutrophils (pronounced NEW TROH FILS), which surround and destroy bacteria in your body; and
Lymphocytes (pronounced LIM FOH SITES), which are the key part of your body’s immune system, and defend against viruses.
A third kind of blood cell, the platelet, helps your blood to clot.
The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections.
Everyone has been sick with an infection at one time or another. That’s because it’s easy for bacteria and viruses that cause infections to get inside the body. Healthy people don’t often get infections even though bacteria and viruses are all around us, even in the air we breathe.
The body protects itself against the constant risk of infection by making a lot of neutrophils. They are your main defense against infections.
People with neutropenia get infections easily and often. Most of the infections occur in the lungs, mouth and throat, sinuses and skin. Painful mouth ulcers, gum infections, ear infections and periodontal disease are common. Severe, life-threatening infections may occur. Often the child or adult must be hospitalized and receive intravenous antibiotics. Your doctor uses blood tests to find out whether you have enough neutrophils.
The level of neutropenia may vary considerably. In general, the blood of healthy adults contains about 1500 to 7000 neutrophils per mm3 (1.5 - 7.0 x 109 /1). In children under 6 years of age the neutrophil count may be lower. The severity of neutropenia generally depends on the absolute neutrophil count (ANC) and is described as follows:
* Mild neutropenia, when the ANC falls below a lower limit of 1500 per mm3 (1.5 x 109 /1), but remains higher than 1000 per mm3 (1.0 x 109 /1).
* Moderate neutropenia, when the ANC falls between 500 per mm3 and 1000 per mm3 (0.5 x 109 /1 - 1.0 x 109 /1)
* Severe neutropenia, when the ANC falls below 500 per mm3 (0.5 x 109 /1)
Mine were .1, so Severe would be the classification....
A decent site about Neutropenia is: http://www.neutropenia.ca/about/index.html
The basic thing is to get a CBC (complete blood count), and if your neutrophils are too low (don't recall the level) you have to check into the hospital, and get IV antibiotics until your levels come back up. So the initial test is a CBC, and if that's good, you probably just have some infection and maybe an antibiotic change will help (I'm currently on Cipro). However, of you're neutropenic, you're just too low, and you can't fight anything - even bacteria in your body that you normally handle quite well can become an issue - so you get high dose, broad spectrum antibiotics. I'm allergic to Penecillin and Clindamycin - two of those broad spectrum anti-biotics, so they'd have to use something else).
I tried to see if I could get all this checked out at the local hospital (Princeton, about 20 mins away, versus the 1 hr drive to Hackensack. I called my local oncologist in Princeton to see if that was an option, as you need to have an affiliated doctor. They were not that receptive, given that treatment was administered elsewhere, and for continuity of treatment, they suggested I go to Hackensack, bummer... So Earle and Marsha watched the kids until Omi and Opa came to sleep over (many thanks to both families!!), and off we went to Hackensack (ER). We got taken very quickly - about 15 minutes from when we signed in - amazing - and they were very busy.... We got our curtained room, got some blood taken, chest X-Ray, etc.
Thursday night we got:
The rest is on tomorrow's entry...
09:46:44 am, Categories: Treatments, 258 words
Day 72 (Wed) 6th Day Post 2nd 'B' Cycle, 4th Cycle total
Decided to work from home today after getting some grief from Chris (wife) and Alex (brother) about over-doing it with my NYC trips, etc. My WBC's were 1.5, and my HGB's were 5.8, so cutting back a bit was probably smart. If I can do it from home, and reduce the risk of infections, colds etc (it's getting to be cold/flu season), why not. Work has been great with accomodating, so that's good.
Scheduled a transfusion at a local cancer center - Robert Wood Johnson in Hamilton has a new cancer center, and it has a great infusion center. On the first floor, with all the chairs pointing out to large windows that look out to trees, gardens, etc. Since you're there for a few hours, it makes it a lot nicer. They provided a great boxed lunch, had sodas and juices, coffee, etc - nice setup - and really really nice staff. I did work for the almost 4 hours I was there (1.5 or so for cross typing the blood and then 2 hours for the transfusion, plus some admin time, etc.) doing conf calls, etc. You're just sitting there, what else are you going to do, watch TV?
Went home, spent some time with the family, and then finished up the work day...
Feel good as a result of the transfusion, not sure if I really feel any better - the test will be when doing stairs, etc. I'll get my CBC's on Friday to see how I'm doing. Not sure how long it takes for the fresh blood to impact your counts.
10:56:37 pm, Categories: Treatments, 145 words
Day 71 (Tue) 5th Day Post 2nd 'B' Cycle, 4th Cycle total
In NYC for meetings, felt winded when walking between buildings, coming up 2 flights of stairs out of the subway really winded me. Had to stop at the top to catch my breath - which was really gone.
Went to the Dr. for a regular checkup, and blood work showeed HGB at 5.8. Off to the clinic for a transfusion. It's neat - interesting to see what the impact of the HGB is on your daily activity, etc. Got a pint put in me, and I get another tomorrow (it was too late in the day to get both pints today). It takes almost 2 hours to get 1 pint put in you! Feel better - not that I was feeling bad, just too winded with basic activity. I was apparently looking a bit pale too - I hadn't noticed that. I have some color back now.
Aside from that, all is good.
07:17:12 am, Categories: Treatments, 171 words
Day 70 (Mon) 4th Day Post 2nd 'B' Cycle, 4th Cycle total
Going to NYC for meetings today, and possibly a dinner after - depends on the energy level. Don't want to push it too much. I have a follow-up appt with my onc (Dr. Goy) tomorrow, where I'll get to see my CBC's (real curious).
I need to get the detailed results of my last PET/CT/Colon/Endoscopy tests. I realize I never got a copy, and I like to see them myself, as opposed to just hearing 'better' or 'good', etc. from the doc. One thing you hear repeatedly with treatment is that you are your own best advocate. You kneed to know as much as possible. Going to symposiums, reading NG's, learning about what's out there is tough (too many options), but it's essential to knowing what's going on, and having intellegent conversations with your doctor. The flip of that is - everyone says you do need to put your faith in your doctor, as it is a major part of the process. Just a guarded faith I suppose!
07:10:49 am, Categories: Treatments, 178 words
Day 69 (Sun) 3rd Day Post 2nd 'B' Cycle, 4th Cycle total
Another beautiful day. We've had tremendous weather in NJ, with little rain, and just great temps and blue skies. I really think that can help your outlook!
Nice relaxed morning, breakfast, church, chores around the house, etc. Just a good day.
I am feeling the effects of the lowered HGB though - carried something from the basement to the 2nd floor, and when I got to our bedroom, I was really winded - really winded. Amazing. Makes sense, I have about half the oxygen carrying ability of what I did previously, and that does something... (Heard a similar story from Cory - 39 year old MCL'er - who said he saw stars after he and his wife carried a new TV upstairs - I understand! He got a transfusion during his 5th cycle, and felt better. Could be in my future, and again - it's all part of the treatment cycle.).
Had some Thai food for dinner. I know you're not supposed to eat anything too spicy (and this really wasn't), but I had cravings for spice. Gotta do what ya gotta do!
06:59:39 am, Categories: Treatments, 273 words
Day 68 (Sat) 3rd Day Post 2nd 'B' Cycle, 4th Cycle total
Got up and went to a symposium at Hackensack – where I have my treatments, and Dr. Goy (my onc) spoke, as did the chief of transplants. My brother went with me (hopefully he’d be a match), and by the end of the presentation – I thought ‘I need one of these’. Then I talked to Goy after, and he said he doesn’t feel there’s conclusive evidence that it really benefits MCL’ers. Similar to the discussions that have been taking place on the NG’s and Listservers. The kicker on SCT is whether it’s more effective first time around, less effective after a relapse, etc. I also asked about Rituxan maintenance, and he’s (Goy) not a believer that it’s that beneficial. This ia all part of the fun of this disease - it's not set in stone yet, so nobody knows exactly how to treat it. We'll see...
Ironically, there's another MCL'er in Chicago that's 39 (Cory), who's just finished up cycle 6 of RHyperCVAD, and he's having good success - but also going through the same SCT quandry, as are several people on a newsgroup and listserver that I subscribe to. There's some time - we'll see. I'd rahter not do it - as it really beats you up a bit - but if needed, I'll certainly do it.
It was a great day, and after the presentation, we (Alex, Kristine, and I) went to Houston's for a great steak lunch! Excellent time. Then home (Alex drove and let me sleep!).
Feeling good - particularly good for a 'b' cycle, that I thought was going to be harder than my post 'a' cycles. Go figure!
10:17:48 pm, Categories: Treatments, 187 words
Day 67 (Fri) 2nd Day Post 2nd 'B' Cycle, 4th Cycle total
Went to NYC today for a presentation, and finished the day out there. Took my Leucovorin, eye drops, etc. Felt good overall, a little tired on the train back home, but the first couple of days after chemo are always a little off. Had pizza for lunch, and couldn't get 2 slices down - just not hungry enough. Dinner was some mozzarella cheeze and crackers. Chris made meatballs, but I just wasn't hungry enough. Again - seems to be part of the pattern. S/b back to normal in a day or so.
Going to Hackensack for a symposium tomorrow that Dr. Goy's speaking at - his is on lymphomas, and then another Dr. is talking about stem cell transplants - which are an interesting topic right now - needed or not, benefit or not, etc. Jury's out on them. We'll see. Alex is coming with me.
My Dad's going through a bit of a spell with Kidney stones right now, having about 12 of them queued up, and getting them blasted to make them pass easier. He's doing better today, but good luck to Dad!! Thoughts and prayers... (and stop drinking the soda!)
10:13:14 pm, Categories: Treatments, 101 words
Day 66 (Thu) 1st Day Post 2nd 'B' Cycle, 4th Cycle total
Scheduled to go home, finished up the last of the chemo, now it's just flushing the body out, getting the methotrexate levels down. They look good, so it was around 3pm that I was released. Got all setup with the meds to take at home (Cipro, etc...), and off I went.
Felt good, real good to get home. Half way done.
Drinking lots of fluids at home. Mom made cheese-steaks - nice...
Again - lost appetite towards the end of the hospital stay, and it's weird what you have cravings for at home. Some say it's like being pregnant. Dunno on that one!
08:01:55 am, Categories: Treatments, 326 words
Day 65 (Wed) 4th Day 2nd 'B' Cycle, 4th Cycle total
Great night sleep!
Didn't ride last night, as I opted to turn in early. Was feeling beat around 10pm, around the same time I was going to ride, so I pickeded up a bicycling magazine instead, read for about 15 min's, and out. Didn't feel Denise draw blood at 4am, didn't hear them fix a couple air-in-line beeps, etc. Did get up to go to the bathroom a few times, and there's always weight and vitals and stuff, but I was able to go right back out... So up at 7:30 and feel great.
8am conf call, etc. etc...
Have I mentioned how nice the nurses are? Sweetie, Cutie, Love, and that's what they call us! Tellin' ya, they know how to make you feel at home. All with the professionalism and understanding that you want. Great mix.
Did the bike for 40 mintues, between 160 and 180 bpm. Felt good.
Put on some weight (about 5lbs), so I got lasiks (sp?), it's a diuretic. I'm drinking quite a bit anyway, trying to flush out the methotrexate. Lots of cranbury juice and water mixed. We'll see what tomorrow brings!
The pre-med for the Ara-C does a number on you - makes you a bit sleepy for a while. Gave in today and caught about an hour's nap. Felt good.
Mom and Alex came to visit - and bring food - a nice change. Chicen parm from the local diner. good, could only eat half, not that hungry again. Had 2 rasin brans at 10am, and that's it - aside from drinking, and drinking....
Hopefully tomorrow will be release day! May be getting a BT (Blood Transfusoin) as i think HGB was in the 7's today. We'll see. again, to be expected with this.
gonna catch a funny movie, get my pre-meds, and crash... g'night all.
08:48:45 pm, Categories: Treatments, 333 words
Day 64 (Tue) 3rd Day 2nd 'B' Cycle, 4th Cycle total
Better night sleep. Made the room a bit cooler, so I slept better. Vinnie suggested brining my own pillow (hels always been pretty bright), and the nurse said it's allowed (just keep an eye on it so it doesn't walk!).
Early conf calls, full day with work, grabbed lunch around 4pm, Chris and the kids came up around 5:30 with dinner - a stromboli - nice! Had a 'small' lunch, so I managed to eat dinner, but was stuffed. Chris also brought up a big bottle of cranberry juice, that i cut 50-50 with water, and I can drink that a lot - s/b good for getting rid of the methotrexate. My initial level was .14 - which isn't bad, as it was .14 later in the cycle last time, and it has to be under .1 to leave. Shouldn't be an issue.
I'll attempt to do the bike later. My HGB was 8.0 today, 8.6 yesterday, so I'm on a downward trend - expected to get lower tomorrow, so that could mean a transfusion. Each bag can get you 1 to 2 upticks. I expected more for some reason, but... I'll go slow and steady tonight - keep the heart around 155 or so.
Feeling a bit beat, just tired. But it was a long day, and not much sleep last night. Still feel good though!
08:55:10 am, Categories: Treatments, 327 words
Day 63 (Mon) 2nd Day 2nd 'B' Cycle, 4th Cycle total
Had a decent night sleep, hospital beds are NOT that comfortable. I think it's mostly the fact that they're wrapped in plastic and make you sweat a bit! (The pillows too.)
Also getting pills for:
Get Solumedrol (a cortiosteroid) as a pre-med. It's stronger than the other cortio-steroids (Prednisolone, Decadron)
Decadron helps with nausea too.
All is well, just hanging out doing mails/reviews/calls/getting chemo...
Banner day! Not only did I get to spend some quality time with Chris this am, but got visits (at the same time) from Viraf, John, and Danny - perhaps 3 of the nicest people you'll ever meet (and that's with even with V being a past World Stick Fighting Champion). Great to see everyone - many thanks for the visit!
Did 40 minutes on the bike, moderating the pace from 85 to about 65, to keep my heart around 170 for the most part, peaking at 180, recovering around 155 for some spells at the end. Felt good!
Note - the nurses here are great. Really make you feel at home. All of them are friendly, helpful, and very professional. Need to write-up a letter for them....
05:13:28 pm, Categories: Treatments, 568 words
Day 62 (Sun) 1st Day 2nd 'B' Cycle, 4th Cycle total
Got the word that we have a bed, and 10am's check-in. Grab breakfast, Omi and Opa came over to watch the kids, and we headed out to Hackensack. (Opa's going to mow the lawn, so he got a quick overview of the tractor operation - thanks Opa!)
Got to the hospital around 10:30am (we left a bit late...), checked in, got the window bed this time! (good stuff - it's worth asking for it when you ask for a room.)
Turns out I'm allowed to go outside to this nice garden area that's on the 3rd floor, so long as I'm not actively taking chemo. And there are nice chunks of time where I'm not getting chemo - so that's good. Seems you have to ask all the questions, they don't give you all the rules up front. And it's little things like being outside on really nice fall days that can make a huge difference (not that the oncology floor isn't more fun that being outside...).
Going to get caught up on some mails, and the blog (was about 4 days overdue), and maybe catch a movie - a comedy of course! (Sattler says Dangerfield, Unkee says Python, etc, we'll see what the magic bag holds!
Seems like it's been a while since I was in the hospital. I think it's because I didn't have any tests inbetween the last visit and now - just a regular dr. visit and the regular blood work. Felt like a nice long break! And now, I'm happy to be getting to the halfway point.
My schedule may change somewhat, as the Dr. will be in Europe for a conference or something - when i'm supposed to get my next cycle, and he wants to be here when I get it (he's very hands on, and I like that). So that could shift things around a bit - which actually may work out better for a vacation we had planned - that we're still debating going on! I don't want to be foolish - but if I'm good, and my counts are good, I want to keep doing as much as possible!
Talked about Flu vaccinations, etc - and it is strongly recommended that the family get flu shots in October - or when they start offering them, to keep everyone healthy around me (Jacquie - good point - thanks for raising it!).
Jeanine posted a note about 'Airborne', and I need to talk to the Doc about that. Her note was:
04:49:53 pm, Categories: Treatments, 331 words
Day 61 (Sat) 16th Day Post 2nd 'A' Cycle, 3rd Cycle total
Relaxed am in bed with the kids - always a great time!
Breakfast, then off to Michael's (craft store) to watch the kids make a craft - a cool plastic Prowler-type model. Esther, Ellie, and Hannah were there; great to see them, then off to Petsmart to look at all the shelter animals and have the kids ask if they can take everything home...
Alex came over and then we went to Joe and Michelle's to pickup some items that they were selling/giving to Alex (Joe and Michelle are 'downsizing' from a beautiful home in Hopewell to another beautiful home in Lambertville, and won't need some item, and Alex just bought his first house - and needs everything). Joe was great and helped Alex move a dining room table and chairs, speakiers, etc, while I chatted with Michelle (I'm trying not to over-do it, so....). Heck, Michelle even made me come out of the sun a few times so I didn't burn my head, etc. Always the Mom.... So, we left Hopewell with a full truck/trailer and went to casa de Alexandro, unpacked, and went home.
Went to 5pm mass with Grandmom and Grandpop, and then we all went to the Italian American Festival at Mercer County Park. Amazing. TONS of people, TONS of food. Lines at least 15 deep at each vendor, and lots of vendors. Sausage and Peppers, cheese steaks, calzones, zeppoles, funnell cakes, pizza, penne vodka, etc. etc - we had our fill, and then some. Then the kids did some rides, John a game, and home we went. It was quite cool - and my lack of hair does impact how cool I get. I tend to run hot, and usually don't need much by way of jackets, etc, but I was chillier than I wanted to be (had shorts on - legs were not the issue, and a sweatshirt). A hat probably would have done the trick.
A great day all in all, and I felt much better than on Friday.
04:41:17 pm, Categories: Treatments, 228 words
Day 60 (Fri) 15th Day Post 2nd 'A' Cycle, 3rd Cycle total
Got to work early, as we had a special 'consultant breakfast' to celebrate breaking 300 billable consultants on the account! A group organized a breakfast for everyone, and managers got to serve the employees (the committe that pulled it together also served). We had pancakes, bagels and topings, hash browns, waffles, cinnamon and cheese bread (from Mastoris - excellent!), sausage, omellete stations (3) - withe the works (peppers, cheese, real bacon, onions, mushrooms, etc. etc.), fruit, and juice. The room was decorated nicely, with roses and vases, nice tablecloths, etc. Everyone that came in was truly impressed, and very appreciative (and of course wanted it to be a weekly/daily event). The group that coordinated did an excellent job, and spent a lot of time prepping. (I was admittedly skeptical of this event, but I have to say - I'm amazed at how well it went, and how beneficial it was.)
Back to work after eating too much - we did get to sample, and there were leftovers....
Felt pretty wiped out Friday night - not flu like but definitely beat. Not sure if it was Wednesday's ride, Thursday's activities, and Friday's early am thing, but fell asleep while watching Charlie Brown with the kids, and felt pretty tired when putting them to sleep. Also had about a 99.5 fever, so I went to sleep around 10pm, and over the course of the night it dropped.
04:40:51 pm, Categories: Treatments, 200 words
Day 60 (Thu) 15th Day Post 2nd 'A' Cycle, 3rd Cycle total
Went mountain bike riding last night. Actually, rode mountain bikes on a tow path in Princeton - the path is packed dirt, quite smooth, not aggressive at all - just a nice quiet ride. We did about 18 miles total, keeping the speed between 15.5 and 17. My heart rate was around 168-186, averaging around 180. took about 1.5 hours, counting a couple of quick breaks. Felt really good to do it. Thanks Andy and Ajay for your patience. Stopped out for Starbucks after, very nice...
Thursday was a good day - nothing major during the day, went to work, we had an event in the eveing in NYC, so I took the train in around 3:40pm, went to a 'cocktail' hour (sans cocktails - just soda, etc), and then our new head of North American Operations spoke. Good session, energetic, etc. Got to see some of my NY compatriots, and it was good to catch up with them. We went to a bar after, but it was too crowded, so we opted to make a dash for Penn Station and catch the 8:07 express - made it!
Grabbed dinner with a buddy from the office at On the Border back in Princeton, and then home. Got in around 10:45pm or so.
02:34:10 pm, Categories: Treatments, 148 words
Day 59 (Wed) 14th Day Post 2nd 'A' Cycle, 3rd Cycle total
Back to normal fully.... No ride this am, planning a mountain bike ride after work - on a tow path, nothing too aggressive, with some friends from the office. Maybe even a trip to Starbucks after!
Got blood drawn at lunch - they lost the results of Monday's tests, so i have no idea what the numbers where - and I really would have liked to...
Getting setup for the next round of tests (endo, colon, pet, ct, maybe bone marrow - hopefully not - I really don't like that one!). Hospital on Sunday for round 4. It's the 'b' cycle, which i think is a bit tougher, but whatever... want to get past the half way mark!
Seem to be putting on a few pounds - need to cut back! That, and of course not excercising as much... Expecting to lose a bit in the hospital, as my apettite there does seem to drop.
02:28:55 pm, Categories: Treatments, 54 words
Day 58 (Tue) 13th Day Post 2nd 'A' Cycle, 3rd Cycle total
Did a little bike ride this am (did too much e-mail and had an 8:15 conf call, so had to cut it short). Need to keep training - feeling better, but need to keep it up.
Feel good, nothing new really. Last Neupogen shot was Monday, so bone pain is going away - getting back to normal.
05:45:19 pm, Categories: Treatments, 179 words
Day 57 (Mon) 12th Day Post 2nd 'A' Cycle, 3rd Cycle total
Had a percocet last night - the bone pain wasn't bad, but enough to warrant a pill.
Got up and did some mails, then got on the bike. Another tough day. Need to keep at that. Did about 25 minutes with an average of 160bpm, but felt winded. Will be out tomorrow on it - if it doesn't rain.
Back in the office - good stuff, great day! Got blood work done at lunch, curious to see where those numbers are. Lower back and hips, and the knees are a little sore. Just moving a bit slow, kind of like I overdid it, but it's just the Neupogen. Took a Tylenol, helped a bit - again, not bad. Also had some soreness from this am in the back of my neck, arms, shoulders, etc. Had it last time too I think. Not like flu sore, but more like work-out sore.
Emily's got a low fever, so I need to keep a distance there. This will be the tough part. School's back in, meaning colds come home, and I need to stay clear of infection!
09:21:10 am, Categories: Treatments, 409 words
Day 56 (Sun) 11th Day Post 2nd 'A' Cycle, 3rd Cycle total
Got up and HAD to do a bike ride. I'd not been on the bike since almost 2 weeks ago in the hospital, and I really feel the need. When in Halifax - where it's fairly hilly, I had to hustle from the office to the hotel to meet up with a friend for dinner. The walk was brisk, and I was winded. Yeah, I was carrying my laptop, etc - but it was a sign that (1) I need to excercise, and (2) yeah, my RBC/HGB may be low - we'll see on Monday's blood test.
Tried the trainer in the basement, but due to one of my front chainrings being too shot (skips like crazy), I'm forced to go to a higher gear - more than I wanted to - and stressing the heart too quickly - shot up to 170 too fast. So - out on the road - and it's a beautiful day anyway! Did about 40 minutes total, around 160bpm average. I felt that 170 was too high - breathing too heavy. 160 seemed to be good. I'd obviously drop to 150 for some recovery, and shoot up to 170 for some stuff, but tried to keep the rpm's around 85 or so. Felt good - and bad; I'm outta shape afte 2 weeeks, or I'm a little low on HGB, or both. Bottom line, I'm getting on the bike tomorrow, and Tues, and.... Firm believer that keeping this up is key to success. Also - just read an article in Bicycling magazine that stopping regular excersice can make you irritable.
Off to church, Alex's etc.
Experiencing some bone pain today - lower back, hips (Neupogen related). Seems just about on time - I've done 8 shots, 2 more to do. Don't know my WBC counts due to the Halifax trip, so I may be good - or it could just be the body reacting to the overproduction of cells. Took a Tylenol, felt a bit better - may do Percocet tonight.
One think I thought of during church today. A friend of ours, Deacon Pat, gave us good advice when he administered Rights prior to my going into Hackensack for my first treatment. He said to be sure to thank God for helping me to make it through this - succeeding in this. NOT to ask Him to help me, but more pointedly to thank Him ahead of time for making it through. It's a tough one. Lots of faith, optimism, etc. I do keep thanking Him for all the help, and for making my treatments successful. It's a significant mindset.
09:15:23 am, Categories: Treatments, 222 words
Day 55 (Sat) 10th Day Post 2nd 'A' Cycle, 3rd Cycle total
Ok, fun day. Got to sleep around 12:30am or so, and the flight out is at 6:35 - so up at 4am. Hurricane Ophelia is expected to come to Halifax later Sat, so there's some urgency to get out of town - never mind wanting to get back home and see the family! Got to the airport on time, got out of Dodge, and was running errands back home by around 10am! Got home and crahsed! (The family was out for a bit.) They came home, I caught up, and then crashed a bit more.
I'm being more careful to listen to my body and not push it where I may have otherwise. If you know you're low on sleep, and heck, if you're tired - take a nap. There's enough stuff going on in you that you don't need to push for the fever or worse.
Got up, and went to a local fair (Septemberfest), where we met up with Doug, Esther, Ellie, and Hannah. We went on some rides, had dinner, played some games, and genereally had a great time. Back home and the kids got into bed - fully wiped out. Did some stuff, and then we crashed. A good day - great to be home!
Over to Uncle Alex's tomorrow to check out his new pool, and maybe even help him out a bit...
09:07:15 am, Categories: Treatments, 196 words
Day 54 (Fri) 9th Day Post 2nd 'A' Cycle, 3rd Cycle total
Up in Halifax, Canada, having a good time. It's work mind you, but good to see people that you usually only mail/speak with. Trips like this are too darn short!
Nothing spectacular during the day - watched the temp a couple of times, looks good (97-98 - I tend to run cool). Felt good, a little tired here and there, nothing major.
Had a great meal with John Mac and his lovely wife Nancy. (John was off on Friday but was kind enough to accompany me to dinner - truly appreciated, and of course, quite a pleasure.) Went to the 5 Fisherman - highly recommended - where they have a great Blackened Halibut with some sausage, jalepeno bread, veggies, etc - nice stuff. I know you're not supposed to go too nuts on spice on chemo, but you have to live a little!
Took a great stroll from dinner to the hotel to (attempt to) work off some of dinner, and then did some mails, and tried to get to bed early, as I have an early flight out. Oh yeah, another Neupogen shot - I still like when Chris gives them to me better, but I'm getting used to it in the leg.
10:03:27 pm, Categories: Treatments, 118 words
Day 53 (Thu) 8th Day Post 2nd 'A' Cycle, 3rd Cycle total
Got up early (5:20am), and headed to the airport, and off to Halifax. Uneventful trip, noticed that nobody on the plane was coughing or sneezing - so I was happy. Lots of hand washing for me anyway!
Did some work in Halifax, and then off to a Thai place for dinner, and gonna crash in a bit. Feel good. Have to give myself the Neupogen shot tonight. Did it once b4, just to try. I do it in the thigh, not bad. I do like when Chris gives it to me better!
Had a nice meal at night with some of the team (Patty, Jose, Monica, and of course Sammy), and then back to the hotel for some mails.
10:00:26 pm, Categories: Treatments, 183 words
Day 52 (Wed) 7th Day Post 2nd 'A' Cycle, 3rd Cycle total
Good day... just a bit tired. I think I overdid it a bit yesterday (golf and soccer...). Ended up with a bit of a fever - just 99.8, but seems to happen when I do bit much during the nadir.
Met with the doctor today. He's happy with the progress. He'll re-test me after 4 cycles just to verify progress. If it's not progressing, we'll adjust somehow - not sure how, but.... The MCL is still in the colon now, but not as much, and seems to have retreated from everywhere else. Hickman site looks good, blood counts were good. HGB was 8.6, still lower than I want, but not that bad - no transfusion this time! Gave me the go ahead to travel, so off to Halifax for Thurs/Fri! Also got the vincristine push, and the Dexamethasone (I think), and I start the Dex... pills tomorrow for 3 days. 10 pills, all at once with breakfast.
Did some work, and then had a great meal over at Earle and Marsha's to celebrate back to school! Karen and Stu came over for dessert - and it was great to see everyone!
07:46:12 pm, Categories: Treatments, 169 words
Day 51 (Tue) 6th Day Post 2nd 'A' Cycle, 3rd Cycle total
Had a 'work' golf outing today. I'd like to say the chemo impacted my play, or maybe the hickman, or maybe even the cancer, but alas, I have to suck it up as my own ineptitude at golf... I didn't hit any woods, in an attempt to keep myself from straining too much - specifically concerned about the Hickman line. Everything felt good the whole day. The tape I use to secure the Hickman to my chest got a bit loose by the end of the day, but that was it. No alcohol of course, just gatorade and water... (Best ball format, we finished 1 over par for anyone that's interested - great day of golf with an awesome foursome.)
Played a little soccer with the family at night, and now to get caught up on e-mails....
A dressing change as well for the Hickman, as it's needed after today!
Doc's tomorrow for a general checkup, and blood counts to see if I can to to Halifax for a trip Thurs/Fri.
10:44:04 pm, Categories: Treatments, 324 words
Day 50 (Mon) 5th Day Post 2nd 'A' Cycle, 3rd Cycle total
Great day. Had to go to NYC for training/meetings, and despite catching the 6:51am (a bit earlier than my days in the local office), it was a great day. Got some work done on the train, had a good training session, followed up by about 3-4 more formal meetings, and a few impromptu ones. It was my first time in the city in a while, and good to be back. I'm not much of a city person, but it's nice to visit, and I really felt 100% today, so it was good to be there when I felt on top of my game. The weather was great as well, so that helps!
I got to meet up with what I really consider to be some good friends from the office, and it was great to see them in person and catch up. Really good people, and very supportive. Again, it's the people and support that really hits you when you go through this. Got a great inspirational story from one friend, and truly helps to put things in perspective - attitude is huge. You really need to keep the right focus, and just go at it. I'll do all that I can to do that.
Golf tomorrow (work outing ), so a 7am breakfast/practice range. I'll be taking it easy, as the Hickman line really doesn't allow for heavy swinging, etc (that's ok, I didn't have a drive before, so this is just a good excuse to give my drive to someone that can....).
Blood counts from Friday came in - WBC's at 6, HGB at 10. Good news! (HGB was 8.6 in the hospital, so it went up - that's the one that would indicate anemia, or a possible need for a transfusion.) Wed is the real test, and it should probably be down a bit by then - as it should be dropping (again, 7-10 days post chemo is the nadir - or low point), but I'll take the good numbers inbetween.
10:59:53 pm, Categories: Treatments, 268 words
Day 49 (Sun) 4th Day Post 2nd 'A' Cycle, 3rd Cycle total
Great Sunday morning - opted to stay in bed (with the family) versus getting up to cycle. Don't know how that won out... Sunday pancakes (for the kids - chocolate chip), bagel for me... Church, shopping, car washing, yard chores, etc. A good Sunday indeed.
Felt better today, more energy, less stomach uneasiness (not nausea before, just uncertainty with eating, what to eat, etc.). I tend to be eating more, but my weight's staying the same(someone on one of my ng's said during chemo you can eat more - body using more energy?). I think some muscle may be attrophying! I know I'm not as active as I was previously, trying to take it easy on the Hickman, and in general. Need to cut back on the eating a bit!
Going to NY tomorrow for work, will be watching what I touch, how ofter I wash my hands, etc. 2nd Neupogen shot (of this cycle) tonight.
Talked to my Uncle Brian (the other Unkee) tonight - brought up a great point - the value of comedy. When in the hospital for chemo, I usually watch about 2 movies during the week. I tend to go with drama/suspense. He asked if I saw any comedies. I enjoy them, but I hadn't. We talked about the benefits of comedy, and I don't know why I hadn't thought of that b4. I think there's a lot to be gained by watching Young Frankenstein or the Meaning of Life - and will look to do that next time. Instead of being 'stressed out' by some movie, just let loose and watch a hysterical movie, it's gotta help.
11:26:37 am, Categories: Treatments, 178 words
Day 48 (Sat) 3rd Day Post 2nd 'A' Cycle, 3rd Cycle total
Good day! Really nice out... Got up and had cereal (Honey Nut Cherios) right away - just made the stomach feel better. Wasn't that hungry, but... Pre-lunch, had some tostitos - salt seems to do the trick, and some lasagna. We're going to a picnic today, so it was just a couple of bits of lunch. Feeling not quite 100% yet - a little tired. Had blood drawn yesterday, so I won't know until Monday from the dr. what the RBC/HGB counts are, but I'm sure that may have something to do with it. They were expected to drop a bit, which can bring on anemia - or a feeling of tiredness - from what I get. Not overly tired, I raked the leaves on the playground area with the kids, cleaned up, etc. Jsut feeling a bit peekid. (sp?)
Hickman site still has some pink to it, I'll do a dressing change today, as the perspiration under the bandage tends to soften up any stuff under there, and it just seems prudent to change it today. The last change was on Tuesday.
10:55:54 am, Categories: Treatments, 349 words
Day 47 (Fri) 2st Day Post 2nd 'A' Cycle, 3rd Cycle total
Another 8:30am conf call, again - good to be back in the office! Took the car again, stuff to do, want to make sure I have enough wits about me before taking the bike.
Getting up regularly at night due to lots of drinking b4 bed (flushing the kidneys works), about every hour. However, seems I get back to sleep pretty quickly - the body adjusts.
Last night - woke myself up with a burp. Pretty big one, not a bad one (no stomach issue), but I pretty much never burp. Another smaller one occurred later. Just a data point. Stomach feels 'fine'. -- Just realized, I'm not usually a soda drinker, and I've been drinking a lot a lot more of it than usual - could be related.... (duh).
Still in a bit of a funk (Feel good overall - it's just the post chemo funk I've come to expect) - appettite especially. Not sure what I want to eat, if I want to eat, when I want to eat. After the first cycle, I found that being more full actually made me feel better. Not sure now. Playing it by ear. Have food nearby - crackers, peanut butter, etc - never know if you'll need it. Keep drinking - find a fluid that suits you. I love water for the most part, but right now it does nothing for me. Having more diet/non caffinated soda.
Hey - my brother's closing on his house today - Good Luck to Him!!! Huge step!!
Should get CBC's tomorrow to check, then on Monday, then the Dr. on Wed for more and a decision on travel. Wed will also be the vincrisine push, and the Dexamethasone pills after. Neupogen shots start this Saturday to boost WBC's.
10:35:18 am, Categories: Treatments, 210 words
Day 46 (Thu) 1st Day Post 2nd 'A' Cycle, 3rd Cycle total
Back at work.
Did an 8:15 conf call, followed by another at 8:30, etc... Full day of meetings, etc. Took the car instead of the motorcycle - despite a beautiful day, as it seems the first 2 days after chemo I'm usually a bit 'off'. A bit out of it, stomach not quite right - not sure what to eat/not eat. Want to drink a lot to flush the kidneys (required to keep the chemo from hurting them), yet, you still feel bloated from all the IV's in the hospital. It's a weird transition time. Don't know if it's the chemo from the week taking its toll, etc.
Regardless, lots of meetings, etc - good to be back at work and seeing people, calls, etc. (Different than being in the hospital doing it.)
Nice to be at home, have dinner, etc. Did bills, caught up on some paperwork, etc - up until around 11:45 or so, and crashed.....
BTW, talked to a good friend Guy, who just had triplets that were a bit premature and underweight. Helps to put things in perspective. I've got my battle, and Guy and his family have thiers. Thoughts and prayers to you guys... We know how tough Dad is, I'm sure they've all picked that up, and Peyton's quite the fighter!
08:38:57 am, Categories: Treatments, 504 words
Day 45 (Wed) 2nd 'A' Cycle, 3rd Cycle total, Day 4
Good nights sleep.
Good news, the night nurse - Maureen (aweome, not sure how she has that much energy overnight), was pushing to see if I could get out today, as opposed to Thursday. My last Cytoxin was at 5am today, and in speaking with Goy today, he's going to go for a 4pm Vincristine and Adrimycin push - which will get me out tonight!
My HGB levels went up to 8.6 (from 8.4), but Goy expects them to drop, and he we'll watch them to see if I'll need blood next week to boost them.
Interesting discussion around iron this am and RBC/HGB production. Goy said that the Iron I have is fine, the low levels are more a result of the chemo beating them down (or beating down the precursors to the RBC's). He had been involved in studies in Europe where they were giving Procrit (sp? - an iron booster I believe) to people to super size their iron to help production, and there was no benefit. So back to iron supplements or multivitamins, it doesn't seem they'll really benefit me that much.
Meanwhile though, I'm still going to cut back on milk, and keep eating my iron fortified cereal! (I had cereal for breakfast, lunch, and dinner yesterday.) My appetite is not good right now. No taste for meat, etc. Lance wrote in his book that during his chemo he started off eating well, and by the end of his treatments corn fritters (not even sure what they are) were the only thing he could stomach. I am lookig forward to sphagetti and meatballs at home - they really seam to do the trick when coming back! Thanks to Carol Anne (sp?) and Michelle for making some of my favorite dinners!
Hickman site looks good to me, have a fresh dressing on it from yesterday, new caps, etc. Still looks a bit pink, but much better, virtually no puss, and any slight swelling has receeded.
I'm home! It's 10:43 and I'm home! Kristine picked me up, and handed me off to Alex at the Menlo Park mall, in exchange for 2 cats and a laptop. not sure who got the better deal, but i got home. Chris had spaghetti and meatballs for me - which tasted great! (All I had at the hospital today was 2 containers of raisin bran.) Somethin' about the spaghetti and meatballs... Real happy to be home.
No bike riding today, a bunch of work, a little nap, and then ready to go. Julie gave me my Vincristine and Adrimycin pushes - nice and slow. She's very methodical. The Vincristine is apparently the one that kill skin quickly - it's one of the reasons they don't want to use a typical IV when doing this chemo. If anything happens when admininstering it, it kills the skin, and you have to get a skin graft. Slow administration through the hickman, with her pulling pack some blood now and then to stagger the administration is the preferred course of action I suppose. Works for me.
off to bed soon....
09:48:30 am, Categories: Treatments, 382 words
Day 44 (Tue) 2nd 'A' Cycle, 3rd Cycle total, Day 3
good night's sleep...
Met with Dr. Goy this am, and here's the key points:
Amusing anecdote - I use my passport as ID when travelling (as my license has no pic on it), and the passport photo has me about 55 lbs heavier than now (result of Atkins and excercise), and I've since shaved my head and face. So - that should be interesting.
Doing conference calls, mails, etc. Want to be on the bike later today, etc. etc.
Did the bike for 26 mintues today, with an average heart rate around 167. Cut at 26 as the 'rents and Alex and Kristine were coming up and I had to shower to be kind... Felt good.
Good rest of the day.
09:57:14 am, Categories: Treatments, 807 words
Day 43 (Mon) 2nd 'A' Cycle, 3rd Cycle total, Day 2
GREAT NIGHT OF SLEEP! (hey, it's the little things that count when you're in the hospital!)
Did some work until around 11:30pm, was getting sleepy, didn't get the Ambien as I was pretty tired. Went to sleep quickly, got up around 4:30 for the vitals check - that one has the overly happy nurse's aid saying 'good morning' etc. etc. Can't you do it without trying to really wake me up? (She was kind and didn't make me get on the scale, as I checked in yesterday and she'd use that result!) Denise - the great night nurse - came in around 5am with the Cytoxin, and she understands sleep. She REALLY tries to do it withough waking you, and if she does, she talks to you in a very soft voice, just great... Got up around 7:45am after that.
Feel great, good breakfast, some work, and Chris will be up soon. Need to get on the bike today, as it's been almost 2 weeks since I've last been on it for the 30 mile ride. (Had some minor fever during my nadir right after the ride - not associated, just part of the normal 'course of action', and then the tests last week just left me short of time and energy (lots of not eating for colonoscopy, PET/CT, etc - doesn't leave you feeling like you want to excercise!)
Good day still, had lunch, Chris came by, played Othello, got beat bad on one game, and I won the 2nd! Joe and Michelle stopped by (THANKS) and were kind enought to share some of the pics of their recent trip to Germany and Prague - many thanks for coming by!
I've been having some hiccups today, not sure if it's the meds, or... I dind't get them on the first A cycle, did on the B cycle, we'll see.
Had a late lunch, and had some nausea kicking in - then the nurse comes with the Kytril. Like clockwork - that stuff is great - seems to last 24 hours.
I'm getting on the bike shortly. Need to excercise!!
BTW, talked to a good buddy today, and he asked if what I'm posting here is me being honest, or putting on a bit of a good face for the benefit of family and friends. It's honest. I'm not holding back. One of the purposes of this blog is to act as a data point for anyone that has to go through this, and I'll post the good, the bad, and the ugly. I'm hoping for obvious reasons it's more good than bad, but I'll post it. So far I've been lucky. Do I expect it to be a bit more taxing as the cycles continue, yes. Do I intend on cycling and doing work in the hospital, yes. I think the latter is a very important part of recovery. He also commented on the outpouring of support that I've been receiving (posts, visits, etc), and I said again - it's by far the most amazing part of this journey. Thanks to all....
Had a great talk with one of the nurses - Dana, who's big into CBC's (blood counts) and what they mean:
I did 40 minutes on the bike, alternating my heart rate around 170-155, mostly in the 170-165 range. I dropped it down a bit based on Dana's discussion with me, where my HGB is a bit low, and I really shouldn't stress the system more than needed. A good 40 minute ride, keeping about 84 cadence - except when I wanted to drop the heart down - felt really good.
Hope everyone's enjoying the long Labor Day Weekend, our best to you and your families!
12:11:00 am, Categories: Treatments, 211 words
Day 42 (Sun) 2nd 'A' Cycle, Day 1
Heading to the hospital for my 2nd 'A' cycle, or 3rd cycle alltogether. Curious to see what the results are from the tests last week.
Headed off the the hospital around 9:30am, getting there around 10:30am, got checked into my room right away - same room and bed as the very first time I checked in! (couldn't change over to the window view bed this time, as I have a roommate that seems to be staying.)
Got hooked up pretty quickly, got the sodium drips running, then the Rituxan (with Tylenol and Benadril before) this time. That was followed by Decadron (cortiosteroid), and then Cyclophosphamide (chemo).
Had the oral meds, Kytril (anti Nausea), antibiotic, antiviral, antifungal, etc.)
Had the admission review with the on-call doc. The doc is happy with the hickman site - the lack of pain and minimal discharge is what makes him pleased.
Feeling good, glad to be plugged in and getting everything running.
Schedule for this week s/b:
12:07:31 am, Categories: Treatments, 71 words
Day 41 (Sat) Post B Chemo Cycle Day 15
Good day, just did some chores around the house. Alex was kind and cut the lawn for me - thanks! Played with the kids, and generally had a good Saturday!
The Hickman site still has some oozing by it. Not much, but I'll probably change the dressing tomorrow - I think it's better to change it at home than in the hospital (?). I'm sure they'll do it there too anyway....
Feel good otherwise.
09:07:21 am, Categories: Treatments, 161 words
Day 40 (Fri) Post B Chemo Cycle Day 14
It's Friday, beautiful out, left 2 smiling (but still somewhat sleepy) kids on the couch, Chris made me a great lunch, took the bike to work, life is good!
The Hickman site looks pretty good - but it looks like there may have been a little discharge - not sure from where. Not much, but I'm surprised, as I thought it was all done. The next dressing change s/b in the hospital, and I'll have them check it out, and I'm sure they can do a more thougough job than I can. Of course, I do have some concern that there are more airborne 'things' in the hospital than in the house. And certainly more 'things' that my body is not used to - I think that's one of the worries people have about Hickman's in the hospital.
The hip's still a bit sore from the Bone Marrow Aspiration, but that site looks good, I keep a band-aid on that one just for cleanliness.
05:47:12 pm, Categories: Treatments, 300 words
Day 39 (Thu) Post B Chemo Cycle Day 13
Went for PET/CT Scan today. PET scan only took 25 minutes - which was better than the last time (took 50 minutes). Problem is, you can't eat before it, and you have to drink 3 glasses of water, then some stuff they give you to drink, etc. And - the room is cold. Bottom line, I guarantee you that you feel the need to get up before the test is over - and you have to lay perfectly still....
All in all a painless series of tests, and went into work after.
I'll be changing the dressing on the Hickman site later today - to try to keep that clean(er).
Ok - stop reading here if you're squeamish. This is really for the benefit of anyone with a Hickman.
Pulled the old bandage off, I still hate doing that. It stuck a bit at the site, where there was some dried, well, puss I guess - kind of crystalized material. Most of it pulled off with the dressing - which was good I suppose, just took a little bit, and I didn't want to upset the site. (I saved that, in case the doc wants to see.) The site looks better - the stitch spots are not as pin/red, and look to be better. The entry point for the cathater looks pretty good, but it's hard to see, as the opening points down. Had Chris look at it, and she said it looks fine. Cleaned the heck out of it - as much as possible - keeping to the rule of starting at the site and rotating around withouth doubling back (with the alcohol swab). Used the larger pad (not betadine, but some other cleaner) and did the final cleaning, let it dry, and on with the new patch. Looks good.
Up until around 12:30 doing work and some pleasure reading.
08:33:17 am, Categories: Treatments, 126 words
Day 38 (Wed) Post B Chemo Cycle Day 12
Showered, let the shower water help get the Bone Marrow bandage come off - didn't want to pull on that scab. Bandaid over it after - looks good.
Do some conf calls b4 the scoping, head up to Hackensack for the test, some calls after, and work from home the rest of the day.
Looking forward to the end of exams week! (Tomorrow - Thurs - is PET/CT scans.)
Test went well, initial results show improvement - need the oncologist to review all the info, that'll take a few days.
Results of the culture from the Hickman site show there's no internal infection, but there's some strepto-something on the outside. More frequent dressing changes, and we'll see. The site looks pretty good today.
Happy to be able to eat again....
08:18:57 am, Categories: Treatments, 53 words
Day 37 (Tue) Post B Chemo Cycle Day 11
Work from home day - prep for the colonoscopy on Wed.
Pretty quiet day overall - feel good.
Hungy and have a headache by the end of the day. I think the hunger is mostly because you know you CAN'T eat, which is just annoying. But then, you get to anticipate gorging the next day!
08:31:26 am, Categories: Treatments, 396 words
Day 36 (Mon) Post B Chemo Cycle Day 10
Have my endoscopy this am. As the doc doesn't have current blood work, and I'm too close to my nadir, he won't do any biopsies (fear that bleeding won't stop if the platelet count isn't high enough), but that's not really what I'm interested. I just want to see what's in there compared to before.
The endoscopy went great! Still a weird sensation to be in the OR with the docs and nurses, final prep taking place, then you wake up in a room and it feels like 5 minutes later, but you're in a different room, and none of the stuff is attached to you anymore. But - I like it. Initial results looked good. He took a couple of biopsies.
Called Dr. Goy's office regarding the redness and puss by the Hickman site, so they saw me. Got blood drawn for counts, they checked the site, and changed the dressing. Some concern, so the doc that installed it checked me out later. In the meanwhile I got my bone marrow aspiration. He did a great job, but I still hate getting that done.
The doc that installed the line said it looked pretty good - she didn't want to take it out yet. They drew blood for a culture from the hickman, and they'll check that. If it's positive for bacteria, they can treat with anti-biotics, or take it out. The infection seems to be very minimal, and just at the site of the stitches. She couldn't even get any puss to come out. So we'll go with more frequent bandage changes, and watch it. I'd like to keep it in, as I don't want a PIC line, and having a triple lumen installed every chemo treatment doesn't sound like fun. Wouldn't be that bad - as it would free me up between treatments! Any way it works out, it'll work out...
Finally left there around 6:30pm or so. Got home, ate breakfast, lunch, and dinner (had to fast before the endoscopy, and there was pretty much no time for lunch, etc - except for a starbucks coffee and some pastry on the way home....). The kids came back home, and all was well.
I gotta get some work done, and tomorrow is prep for the colonscopy, there's a good time!
BTW, WBC's were 36 I think, and Platelets were around 55. I need to get a copy of the CBC
08:20:34 am, Categories: Treatments, 292 words
Day 35 (Sun) Post B Chemo Cycle Day 9
Chris had a shower to go to, so I hung out with the kids for most of the day. I tried to take it easy, not wanting a repeat of the fever thing from Sat. Mom came over about mid-day to cook a turkey for dinner, and later Alex and Dad came over. Good stuff, as Alex went outside to play with the kids, which I had been trying to stay away from (fever thing). The kids were happy...
Just took it easy for the most part.
We had a great turkey dinner, with all the trimmings, so that was great - as I'm not allowed to eat after midnight, until after the procedure tomorrow am (Endoscopy). The after midnight part isn't bad, it's more the am that bothers you mentally! So binging a bit the night before seems to feel good. Thanks Mom for the dinner!
Temp rose up a bit in the evening, hovering around 99.5 and 100.1 or so. There's a bit (small amount) of discharge from the hickman site - looks like it's from the stitches. So we called the on-call Dr. and he said that it could be from trauma to the stitches, if there was some pulling, and so long as the fever doesn't go higher, it should be fine. We're keeping an eye on it, and we'll be in the Hackensack area tomorrow for the Endoscopy, so maybe we can stop by for them to take a look at it and check it out. Not sure what can be done, antibiotics? I do NOT want the Hickman out. As annoying as it is, it seems better than a PIC line (in your arm).
Went to bed at a decent hour, watching the temp regularly. Seems to settle out overnight.
08:09:38 am, Categories: Treatments, 571 words
Day 34 (Sat) Post B Chemo Cycle Day 8
Follow up to some knee pain during the day yesterday, that required 2 Tylenol. Started up again in the evening, making me limp a bit - requiring 2 more Tylenol at around 11:30pm. By 2am I hadn't really slept much and got up to check the web for any stories of similar. Not much luck - some notes, but nothing very helpful. Gave up and called the doc to see if I could take some leftover Percoset from the Tonsillectomy (only about 2 months old). He said yup, take 2 every 6 hours.
So - took 1 (as the original script was 1 every 4 hours, but I know the docs said there was really no way to OD on them at that level), and figured if I needed the other I'd take it. Took about half an hour to really kick in, and off I went (this is around 3:30am or so). Woke up around 5:30 with more discomfort. I don't want to call it pain, don't get me wrong, it hurt, but it's more of a dull throbbing sensation, that comes and goes. Also makes you feel like your knees aren't going to support you at times. Took 1 more, back to sleep. Woke up this morning around 7:30 with the kids - in a bit of a fog!
Feel pretty good, some discomfort, but nothing like last night.
Today I have to change the dressing on my Hickman, that should be fun. Nothing major, just need cleanliness, and the thought of pulling the adhesive away does not do anything for me. I'll do that after the day's chores.
I'm at Day 8 (or 9 depending on counting) post chemo, so I'm right at the low point. Blood work from Thursday had me at .6 for WBC, so I do need to watch (stay away from infections, colds, wash the hands a lot, etc), and that's why I'm on the Neupogen shots still.
Aside from that, I feel really good. I did not get a chance to bicycle this am due to the knees, lack of sleep, and drugged out feeling, but I want to do something this weekend!
Changed the dressing - that's kind of nerve racking. Nothing major, but cleanliness is huge, and they have a sterile field you lay out, special sterile gloves (not the normal ones, but ones that you can only touch on the inside, etc.). Got through that with Chris's help, and I think we did good. I keep having trouble with the bottom of the dressing, where the cathater leaves the dressing, it tends to loosen up due to cathater movement I guess. I apply some tape to the cathater just after the dressing to stabalize it. However, the movement has caused there to be a bit of a gap around the cathater in the dressing. I'll talk to the doc about this.
Took it pretty easy the rest of the day, but I started to get a temperature 99.x, and it hung out around 99.8 and 100.2 for a bit, peaking at 100.4. If it goes to 100.5 you call the doc, and then usually take Tylenol, and they'll tell you what to do (hospital for antibiotics, etc). We just kept taking the temp, and taking it easy. It broke at some point during the night, and I went back to my usual 98 or so.
I also got my last neupogen shot for this cycle, and expected more bone pain. Got some, so I took a percocet before going to bed. Helped a lot.
02:10:05 pm, Categories: Treatments, 273 words
Day 33 (Fri) Post B Chemo Cycle Day 7
Wanted to get up early and train on the bicycle, but sleep won out, and....
I need to do some training this weekend, this once a week stuff is not gonna cut it! My weight has been staying the same (195), but I feel my midsection is a bit larger. I am drinking a lot of fluids, so that could be part of it - bloated - but I also know I'm eating more that I did before. Someone on one of the groups had posted that you can eat more during chemo, but need to watch that.... Worked hard to drop the weight a couple of years ago, and that should be helping me with this battle now.
Called the nurse on the 'pinkness' of my stitch sites, and she felt so long as no oozing, or foul smell, etc, it was probably just some pulling on the skin - and that's what if really feels like. The stitches stay in until the cuff that's under the skin has grown in enough to stay there without outside support. nice visual i know, sorry...
The press and seal saran wrap trick is still awesome. for anyone that has to keep a site dry, it's great. that and a little tape!
getting some back pain right now, seems like the neupogen pain i got before, so i'll be taking a tylenol soon. (it's noon now.)
Got the colonoscopy and endoscopy scheduled for next week - so that's good! Just need the PET/CT/Bone Marrow Scans scheduled.
BTW, found out my Bone Marrow involvement was 5% - so I'm taking that as a very good thing (had figured it was more...).
02:02:43 pm, Categories: Treatments, 120 words
Day 32 (Thurs) Post B Chemo Cycle Day 6
Good day! Felt good from the bike ride, no problems there. Just a normal day in the office (took the motorcycle). Went to get my blood tested at lunch. Local Quest office doesn't take it from my Hickman, so I had to get the needle in the arm
Felt a bit tired by the end of the day (around 8pm), so we kicked back with the kids.
A little concern around the stitch sites (4) for my Hickman. 2 of them seem a little pink, but they're not oozing or painful (can press on the spot without pain). I'll check with the nurse tomorrow.
Game myself the Neupogen shot tonight - in the leg. Not bad. Drew some blood after, but I'll live!
11:11:59 pm, Categories: Treatments, 277 words
Day 31 (Wed) Post B Chemo Cycle Day 5
Good day at work, back to relatively normal feeling. A little tired towards the end of the day, not quite feeling 100%, but at least 95%.
Notable for today, just got back from dinner with Andy, after doing a 30.1 mile ride, with an average speed of 15mph (yeah, just over a 2 hour ride), and an average heart rate of 170. I know this isn't setting any records, and it was all flat terrain, but it fealt great to get out for a good ride, and get the body going. Andy was great with the idea of doing a longer distance, versus high effort (i.e. doing more hills, higher heart rate, etc.). We kept a good pace, doing 17 or so on some nice flats, and then slowing it down on the hills. I felt more winded on the rolling hills than normally. Is it low RBC, or lack of training (only 2 times on the stationary bike last week, and this was the first time this week on a bike), chemo having some effect, etc. Dunno, but bottom line is, I was more winded at the tops of the hill and when pushing it. My legs were pretty done by the end, but it was a great ride. Thanks Andy!
I'm happy, tired, and going to bed!
Oh - many thanks to Linda, a caregiver/wife of another MCL'er, who gave me the tip of using Glad Press and Seal to cover my Hickman dressing site when showering. Works like a charm. Much better than fighting regular saran wrap. Put it on, run a ring around the area, then tape it off for extra protection. So much easier this am! Thanks Linda....
01:37:37 pm, Categories: Treatments, 261 words
Day 30 (Tue) Post B Chemo Cycle Day 4
Went to work, good stuff. Good to be back in the office again. Started off with an 8:15 conf call, and the meetings continued on until around 11am! Then some regular work stuff, catch up on things, etc. Finished up around 6:15pm (meant to leave at 5:30, as I was feeling a bit tired - not bad, but just a little wiped).
Should be doing a relatively flat bike ride tomorrow, hoping for about 25 miles. Feel good now, so it s/b a good one. Want to do the most I can right now, I'm sure later I'll be more tired and opt for a smaller ride - for now, I want to work pretty hard.
Comment on how this is going emotionally/mentally. Still just a thing that's got to be done. There's really no choice, it's a fairly clear path, and that's what we do. The tough part gets to be balancing work/life - which we all have to do anyway. You want to make sure you're giving your work the attention it deserves, and that takes 110% when you're feeling normal, and then you also need to get healthy so you can keep on going. However, I really think it's what keeps my head in the game - in terms of getting healthy. I do at least 60% of a work week when in the hospital. I'm NEVER bored, I have too much work, reading, cycling, etc to do. I can't imagine sitting there and zoning out to the TV. At least not how I feel right now. If things change, I'll let you know....
01:40:46 pm, Categories: Treatments, 360 words
Day 29 (Mon) Post B Chemo Cycle Day 3
Had a doctor appointment with Dr. Goy, ran late as usual... I know - to be expected of specialists. We actually sat out in the hall, with 3 other people, while waiting. Good part was, the blood draw came from my Hickman this time, as opposed to from the arm!
Numbers were good - WBC's were down to 6, so it's back on the Neupogen. He'll be throttling this as needed. Overall checkup was good. At this point, it's just a matter of touching base, and making sure I'm not experiencing any issues with chemo (digestive, skin, heart, etc).
Now I get to get re-staged. This is the way to see how the cancer is reacting to treatment. I'll need a colonscopy, endoscopy, bone marrow aspiration, and PET scan. This must be done just prior to my third cycle, as I have to be past the nadir (low point - which is 7-10 days after chemo ends), so that my resistance is back up. There's always a chance of bleeding, etc when doing a colonscopy or endoscopy, so they want to minimize the chances of any infections, etc. Based on the results, I'll either have 6 total cycles of R-Hyper CVAD (if in CR after 2 cycles), or 8 total cycles. There won't be any more re-staging until later in the sessions, as this restaging is the one that will tell us whether we need to do 6 or 8.
The next steps are:
Obviously hoping for a CR after 2 sessions, but that seems pretty optimistic. I'll take it though!
Chris is working to schedule the appointments, and then we'll have the 3rd cycle the week of Labor Day. That s/b a 4 day cycle, and they start right away (no 'day of liquids' first...).
Came home, went to work (via home), etc... Then kick back and enjoy being home with the family!
Note - seems the first couple of days after chemo I'm in a bit of a 'funk'. Just seem a little out of it, not that energetic, with some mild nausea, etc. Seems to go away after the 3rd day.
03:19:17 pm, Categories: Treatments, 195 words
Day 28 (Sun) Post B Chemo Cycle Day 2
Tired from the lack of sleep the night before, but good to be home and have some eggs and toast - not too much, again, not setting right...
Getting ready takes a while - have to make a 'window' to go over my dressing to keep it dry in the shower. Need to figure out how to do that faster. They do it for you in the hospital, and they do it well! Had to shave the head again. Weird part of this. Lost hair after 'A' cycle, and now it seems to be growing a bit. I'm not skin bald, but the fuzz seems to be coming back faster, as does the facial hair. Kind of a cruel trick of it!
My Dad came over to do the lawn, nice... It's already about 90 at 10:30am. Basically I'm taking it easy today. We have to go to the doctor tomorrow for a follow up. He's a hands on guy....
Feeling better after a nap. Forgot to mention, some kidney soreness, so I'm pushing the fluids. Nothing major on the soreness, just that feeling like you know they're there. So must be the body telling me 'more fluids'.
03:14:25 pm, Categories: Treatments, 733 words
Day 27 (Sat) Post B Chemo Cycle Day 1
Get up at home, had a decent night's sleep. Still takes a while....
Seems the first day or two after chemo I have a bit of nauseau, and eating does help, but you don't always feel like eating. I don't like to take the meds as a first course of action, but the nurses say to do it, as it's better to hit it early on.
We had to go to Hackensack to get Methotrexate levels again. Couldn't do a local lab on short notice - have to work on that next time. The hour drive each way we could do without. Got to HUMed, get the blood done, they want to review, and Goy may even see me - this guy is dedicated... We go to the local diner, grab a bagel and tea, and Chris gets the French Onion Soup. Head back, meth level is .04 - nice! However, WBC is 54. I did take a Neupogen on Friday night (per my discharge instructions), but that seems high. BUN is 36, and CREA is 1.4 - which are kidney related, and Goy wants me to drink a gallon of water a day, and stop the Neupogen and Leucovorin. He's good at 'throttling' the Neupogen, depending on WBC needs, and the Leucovorin was only for the methotrexate. Another doc from the office was in the lab, so he gave me the once over, saving probably half an hour to an hour, as Goy was headed over, but I'm sure he had a bunch of stops.
We head home...
Now it's lesson time - we had a nurse come to the house to teach us how to take care of my Hickman Line. This involves changing the dressing that goes over the entry site, changing the 'caps' that seal the line, and flushing the line with Heparin - an anti clotting agent - so the ports can remanin open, even when there's no chemo going in them (they'd tend to clot as part of the bodies normal systems). Kitty was great. Very nice woman that spent about 2 hours showing us what to do. Mind you, it's not something that I want to do, but have to, and removing the existing adhesive patch is probably the worst part. Good site at http://www.cdha.nshealth.ca/patientinformation/nshealthnet/0214.pdf on how to do Hickman maintenance as well.
My maintenance schedule - per the company that's giving me my supplied and instructions - per my insurance company, has me scheduled for 1 dressing/cap change per week, and a Heparin flush every day. I need to verify that that's what the doctor thinks will suffice. Nice part is, they send you all the stuff you need.
Note on the Hickman Line - I caught up with my buddy Steve (fellow MCL'er at HUMed), and he had 2 infections from his Hickman, that went directly into his bloodstream, putting him in the hospital for IV antibiotics. The outside site was fine, but apparently something got into the catheter, and he ended up with 2 infections, that he felt was really the same one, just re-energized (I believe). He had that removed, and now has a Pic line (in the arm). The Hickman definitely seems less 'invasive' or obtrusive, so I'm going to hope I can keep mine going.
Finished up all that, my Mom and Dad came over with Dinner and the kids (they had helped out with the kids today), and we feasted. Good to eat - sphagetti and meat balls really seems to do the trick!
Kicked back, as I was pretty beat by this point, read to the kids, fell asleep, and woke up to watch some TV. Now, I've been pushing fluids for a while - per the doc, so now I'm at the bathroom pretty frequently. I also had a bit of a redness - just topical, where the new dressing on the Hickman was, keeping an eye on that - seemed to be just a matter of 2 changes in 2 days or something - a little alcohol irritation... All adds up to me not sleeping well. I went to bed at 209lbs, and finished the night at 201. Yeah, a bit of fluid. I was 196 or so when I went to the hospital a week ago. So, the night was not that restful, changing locations, some concerns, some nausea - got an anti-nauseau pill at about 4am, and should have done that sooner.
All in all, great to be home, and I feel pretty good!
07:55:42 am, Categories: Treatments, 328 words
Day 26 (Friday) B Chemo Cycle Day 5
Woke up (finally) arond 7:15. That's after the 3am blood draws, the 4am weighing, the 5am something or another, but at all those are just quick events you roll over for. Bottom line - great night of sleep! Best yet.
S/b released today, expecting around 3pm, if the Methotrexate levels are where they should be. I'm not sure where they are now, but they should be around .1 or something.
Do some work this am, bke maybe, pack up my minimalist belongings, and happy to go home!
Need to make sure we map out exactly what I'm supposed to be taking/doing over the next 2 weeks before my next return...
The day went longer than expected....
Methotrexate level was at .14 at 3pm, so one doc thought about getting me 50mg of Leucovorin, and letting me go, but Goy's standing orders said .1 or lower, and 15mg of Leucovorin. Apparently, the methotrexate can do a number on your liver (or kidneys, can't recall), so you need to get it down.
They had me running 200 (not sure of the units - whatever the pump runs at) of sodium bicarbonate to boost my fluid intake. I normally love to drink water, but with chemo, that's the thing that's changed for me. I don't like the 'taste' of water so much, and with all the IV fluids, I feel bloated anyway. Hot tea really hit the spot before, that may be something.... Decaff of course...
Blood work at 5pm or so, takes time to get back, .09!! I'm good to go. They change my dressing, flush me, etc (Hickman line stuff - this is part of me now until around Nov). I get out around 7:30pm, fly home, have to pick up some meds at the pharmacy. Relieve the in-laws whom have been wonderful to watch the kids longer than expected, and rest with the family for a bit. Nice to be home.
Oh yeah, have to go back to get methotrexate levels the next am - in Hackensack...
10:15:42 am, Categories: Treatments, 295 words
Day 25 (Thursday) B Chemo Cycle Day 4
Great night sleep. Watched the Grudge until around 1am, took a sleeping pill, and was out. Pleasant dreams...
Hiccups kept up. Got some meds that help that out. Thorazine is one, Ba... is another.
My sugar levels are up - that's due to the cortio-steroid. Nothing to worry about much.
Will train on the bike this am, do some work, kids are coming up later, and then some more work. Last chemo is at midnight tonight. Then I get levels checked at 12 noon on Friday, and s/b a 3-4pm release on Friday.
Turns out I wasn't prescribed for my Dexamethasone (cortiosteroid) on day 11-14, and Vincristine on day 11. Not sure why, but it doesn't seem there's a major effect, but we need to find out why I didn't get it, and make sure I don get it next time.
11:30am - got 50mg's of Leucovorin - this was about 24 hours after the last Methotrexate dose. This is a standard 1st dose, NOT basd on my blood tests. They just drew blood to see what they Methotrexate levels are, and they'll throttle the next rounds of Leucovorin depending on how much is needed.
I'm feeling a bit drowsy from the pre-Ara-C treatment, so a nap may be coming. I've been fighting it off, but....
Napped... Chris and the kids came for a visit, nice.....
Did some work, and then started getting sleepy - at around 10pm, tried a movie, but fell asleep during it. So - out by around 10:15! Good night's sleep!
Hickups pick up here and there, the drug that starts with a 'B' helps, so does the Zak trick (cover your ears and drink).
PH is high, so I'm getting Sodium Bicarbonate pills.
Taking the eye drops every 6 hours to prevent pink-eye.
Leukovorin as directed (to contain Methotrexate levels).
10:14:10 am, Categories: Treatments, 596 words
Day 24 (Wednesday) B Chemo Cycle Day 3
GOOD NIGHT'S SLEEP LAST NIGHT.
was doing work, etc until around 12:30, just wasn't tired. Denise and Sophia - the best night nurses around, offered the Ambien, so... took that around 12:30am, and then packed it in around 1am. Woke up at 2am for a bio break, and then slept soundly till 6am. Didn't even remember - or wake up for - the 3pm blood letting (another benefit of the catheter). Then nodded off and on from 6-7:45, when i jumped on some conf calls.
Did work for a bit, Chris came to visit, no training today.
I finished up the 24 hours admin of Methotrexate at around 10:30 or so, then got some pre-treatment for the Ara-C. It was an anti nausea done through the IV, and an anti anxiety drug - that I think helped the anti-nausea. Bottom line - it makes you tired. So, I napped a bit. Felt nice. The drugs are Adavan, Zofran, Decadron.
Got the Ara-C going. That's a 2 hour drip (or 3, can't recall), every 12 hours for 4 cycles. So the next one s/b midnight tonight.
Had a gaggle of visitors tonight, very nice.... thanks for coming. and drinking all my water.
All is well, however, I need to check on the hickup thing. I've read about the hickups from hell, and about an hour ago I started up with some. I can't recall when they hit, but seems a bit ironic. Not sure if it the Methatrexate, or the Ara-C, or in my mind, but - they're there. And they tend to have reverberations. Not just a hiccup, but a hiccup followed by an after shock. Weird, I know.
if only i had some water left to drink... (there's plenty of water, just toying)
gonna do some mails, and then see about watching a movie, then get another ambien - seems to do the trick!
i will train tomorrow, too much laying about....
oh! my buddy Steve is back. He just came back today. He ended up having 2 infections as a result of his hickman line, so they installed a pic line today. He's starting his 3rd cycle - or his 2nd A cycle. All has been well with him aside from some tingling in his fingertips and toes, and the infections. But he looks great and has a great outlook. Good to catch up with him and his family.
Also mailed with my old roommate's son (Mike Jr), and Mike Sr is doing well - not an MCL'er, but having a tough time with his cancer treatment. He did a few days in ICU afer the initial treatment, and they fixed him up there. He's back to normal, and will begin treatment again shortly. All the best to Mike and his family!! Really good people. Mike Jr's setting up an event that I'll post more about in October - as a fund raiser for Cancer. He's got involvement from the NJ Devils and other sports teams. Sounds like he's done a heck of a job. Details to follow.
Got the next prep session (still need drug names - there's 3, at 11:30pm. Feeling tired already, so Ambien may not be needed.
There's a drug they can give you for the hiccups, but I tried an old college trick - from my buddy Zak (the self proclaimed king of hiccups). Cover your ears (tightly), and dring a large amount of liquid. In college it was a beer Zak fed me in O'Brady's I believe, but at HUMed, a water did the trick. No more hiccups, at least for now. Not that the drugs are a bad thing, but I needed to dring more water anyway.
10:48:03 am, Categories: Treatments, 315 words
Day 23 (Tuesday) B Chemo Cycle Day 2
Tough nite sleeping. Kept tossing and turning. Went to bed around midnight, up at 1:30, 2, 4, gave up at 6ish.
Got Prednisolone (cortiosteroid) at around 6am.
Feel good, great breakfast, conference call, some mails, etc. Hey, even got communion from the RC priest coming through. Friends have been kind enough to put me on a number of prayer lists and personal prayers (across multiple religions even!), and please keep 'em coming, but I figure getting communion mid-week has to be a good thing....
I'm going to jump on the bike for a bit - while there seems to be a lull in activity, and then I'll get back to work....
Did 35 min on the bike, doing about 168-175bpm for most of it. Cooled down in the 160 range for the last 5 minutes. Felt good - got soaked... Shower, fresh dressing on the hickman - felt much better....
Doctor Hsu stopped by, everything looks good. Running low on Magnesium and Potassium (was low on Mag last time). This is 'normal' for chemo, or at least this one, so I get some bags added, should boost it. The rest of the numbers look good (or at least reasonable - some low, but workable):
We asked the nutritionist about the RBC's, and what I could do to boost that. She gave us some great handouts on foods that contribute to Iron. I don't like liver, so that rules out the top contenders, but there are other items. It also notes that animal products are better than vegatable products for adding iron. So I had a burger and some sauteed spinach for lunch. Maybe a steak for dinner...
Back to work...
09:24:02 pm, Categories: Treatments, 680 words
Day 22 (Monday) B Chemo Cycle Day 1
Had a 6am appointment to get the Hickman line installed. (A Hickman line is a catheter that is installed in your chest. It has 2 'taps' that allows doctors and nurses to provide you drugs, or take blood. Pretty convenient if you're going to be getting a lot of drugs (chemo). Also good for blood work, as no more needles in the arm. This stays in me until chemo is done. You (ok, Chris will do this) have to 'flush' the lines 3 times a week when they're not in use by chemo - this prevents blood from clotting in them.)
6am at Hackensack means we got up at 4:15am, and were on the road at 5am. We had a little difficulty finding the surgical lounge, but once we did, everyone was great. Got a little prep room with a TV, got into the gown, did a quick medical history session, etc. Met with a doc, then the anesthesiologist, and then off to the OR. It’s amazing how many people are buzzing around with some job to do while you’re just laying there knowing about 10% of what’s going on…. In goes the sleepy drug, next thing you know, I’m in recovery. Life is good! Very little discomfort from the sites (they actually make 2 incisions, one for the tap, and another one I guess to guide it into the vein. Both have seconds of being annoying, but not pain. The site that the tube comes out of ‘weeps’ a bit, and I had to apply some pressure (a large saline bag in a pillowcase! – simple, but effective) to help that heal up. Seems better now – not much came out, just enough to make you ask the nurse – ‘should it do that?’. To which they reply, that’s what happens on the first day.
Got wheeled off to my room. Have a roomie – not sure of his name yet. He got the window seat, but I got the only flat screen TV on the floor! They’re converting over, and they’re trying these out. I don’t watch much commercial TV, but hey, it’s something.
Got started on the basic fluid drips, sodium something, and some sugar water I believe. Then they did the Rituxumab drip for a few hours (start at 100, end up at 400 – the stuff is moving at that point). Took the normal antibiotics, antifungals, etc – orally. That’s all the drugs for today.
Schedule for the rest of the week (also listed as the first entry in ‘My Treatments’:
Feel good overall. Napped a bit, the sedation makes you a bit drowsy for part of the day. Chris spent a good portion of the day here, which of course was great. The kids were at Omi and Opa’s, having a good time I’m sure!
Did a conference call and some follow-ups at 3pm, as well as some mails. Energy level is good now that the sedative seems to be out of the system. The steroid that I start tomorrow should increase energy levels more. Last time I got it at 10pm – NOT when you want to get a boost of energy….
Sorry for the length, but it was a busy day…. (yeah, that I spent most of in bed)
09:22:10 pm, Categories: Treatments, 52 words
Day 21 (Sunday) Post Chemo Day 16
Another good day. Went to Doug and Esther's for a party and saw Claus and Francesca visiting from Ca! Great to see everyone, and a really good time. Even went swimming in the pool....
Got home, the kids went off to Omi and Opa's, packed, did some work, and off to sleep.
09:51:26 am, Categories: Treatments, 303 words
Day 20 (Saturday) Post Chemo Day 15
Got a prescription for Leucovor in the mail yesterday - with no instructions on what to do with it... Called the docs office and got the on-call doctor. Just bring it with you to the hospital. It's to help with the methotrexate levels, seems to combat them. (Methotrexate and Cytarabine (also called Ara-C are the next drugs to get during the 'B' cycle.)
The full line-up (based on the web) is:
I'll post my actual details once I know.
Mowed the lawn, pulled some weeds, chores around the house today. Alex came over and was kind enough to fertilize for me - thanks! Kids at the pool with Chris. Me, I'm staying away from the pool (public pool - not good for staying away from possible infections, etc.).
Strangely enough, I'm looking forward to the next round - in the sense that I feel fine, and I don't want to leave too much time between cycles to kick this thing. Kind of like not wanting to give it a chance to breath/recover. If I can take it, give it to me, and I'll do what I can to keep up. Of course, you need to recover so they can give you the full treatment, and I know there are people out there that haven't been able to take the full series of treatments, so, for that I need to make sure I recover between cycles.
That's it for now, thanks for reading.
09:09:52 am, Categories: Treatments, 468 words
Day 19 (Friday) Post Chemo Day 14
It's Friday!! Another good day!
Went for a bike ride last night. It was about 92 degrees when we started out, and a bit muggy. My heart rate was about 10 bpm faster than normal - which i'm sure was partially the heat, and partially me not riding that much for couple of weeks. We did our usual hill route, and I ran high (bpm) on that, hitting 196 for a bit, and pushing 192 for quite a bit on the climbs, with 188 on some of the 'flats'. We cut the overall ride a little short, cutting over at one of our alternate paths, as I wasn't sure how my endurance was going to be (basic 'fitness', not sure how my RBC counts would impact oxygen intake, etc). In hindsight, I'm annoyed at myself that we didn't do the full route - I had too much left in me at the end! So we ended up doing about 21 miles as opposed to the 32, and we had an average speed around 15mph. Went out for dinner after, and soda (usually beers, but the doc says no alcohol...).
Side note - my buddy Andy came up with a special rule for me to make sure I didn't over-do it on the hill. If I was passed by everyone, I had to stop and walk, and they would come back down the same hill for me. Of course, there was no way I was letting that happen, unless I fell over sideways on the way up! (yeah, always a possibility.) Also, another friend was out, a female nonetheless, and she took pitty on me and let me finish ahead of her on the hill - despite riding my wheel the whole way up. Thanks!
Feel great today, didn't ride on the trainer this am, got up too late. I intend to train Sat and Sun though - and during chemo next week.
I mailed Steve - another MCL'er that I met at Hackensack the day I checked in for my first 'A' cycle. He had just been finishing up his 2nd round ('B'), and he had a similar response to 'A', so I'm curious how he's doing after 'B'. I'll let you know how he's doing once I hear.
Getting good reviews on the new doo! Mixed feedback on the moustache (foo). The foo will go soon, as it's falling out slowly. S/b gone by the end of the weekend.
Weight was 192 this am - it's usually down a bit after a ride - despite trying to put fluids back in, you usually end up down a few pounds, so that fits. I am eating more though, I check with the doc on that next week.
Went to the swim club for a party after work. Good time - hot though! Didn't go in the pool, as I'm staying clear of public pools.
01:06:23 pm, Categories: Treatments, 104 words
Day 18 (Thursday) Post Chemo Day 13
Another good day.
Going to go bike riding after work today. Planning our 32 mile course, with 'the hill'. It's a 10-12% grade, and I'll update the distance of it if we remember to log it. We'll see how it goes.
All set for my Hickman line to be installed on Monday am.
Feeling particularly hungry lately, and not gaining weight. Keeping right around 195. Someone on a group had posted that you can eat quite well during chemo, but watch it after, as if you maintain the same quantity, you will grow larger! For now, just trying to eat good stuff, and not get too hungry!
09:06:23 am, Categories: Treatments, 113 words
Day 17 (Wednesday) Post Chemo Day 12
Another good day! Got on the trainer (a deveice that suspends and applies resistance to a normal bicycle's rear wheel) and did about 25 minutes at a good pace. Didn't monitor my heart rate, but I'm sure it averaged around 150 or so.
Took the motorcycle into work today - that felt good. May get into Princeton at lunch for an errand, and a little extra ride ; )
Weight was been about the same. I'm keeping right around 195. Vacation only put a pound or so on, and that's come off already. Eating well, in terms of quantity and quality. Had some great fluke last night, courtesy of Roger and Kim (and couriered by my father) - thanks guys!!
10:31:16 pm, Categories: Treatments, 153 words
Day 16 (Tuesday) Post Chemo Day 11
Feel good. Back and hip discomfort is gone.
Was going to ride my bike on the trainer this am, but I was up late reading, so opted for sleep instead. Maybe I can get on it tonight...
At work, worked through lunch - need to get caught up. Even with working from the hospital, you miss out on a lot. Good to catch up with friends in the office, lot's of kind words and encouragement.
Noticed more hair coming out today, so....
Called my brother to come over, explained to the kids that Daddy's gonna cut his hair, and....
Broke out the beard trimmmer, the digital camera, and had about an hour's worth of fun! The kids cut, my brother cut, and I got a few in too. Chris wanted nothing to do with it - she was too busy laughing.
If you can't have some fun with this, you're missing out. Some pics follow:
03:43:38 pm, Categories: Treatments, 558 words
Day 15 (Monday) Post Chemo Day 10
Had an appointment with Dr. Goy today.
Good session, he said I looked good, glad to hear that I was taking things in stride. He was happy with the reduction in size of the nodes on my neck. I still have swelling under the right arm, but this was just the first treatment.
We mentioned the back/hip pain, and he thought it was the Neupogen immediately. My WBC count was in the 20's, so he's expecting that it won't go so high the next time (as the second, and subsequent doses of chemo should knock my body's ability to manufacture WBC's more). He'll also monitor it more next time, as I could have possibly skipped a shot or two at the end - if my WBC count was good enough. No biggie - the pain wasn't that bad, and I'm happy to have WBC's working for me.
We discussed the first 'B' cycle which will start next Monday. I'll get my Hickman line installed first - and that will stay with me for the duration of the chemo. (I had a temporary 3 lumen line put in for the 'A' cycle to accomodate going on vacation and not wanting to be restricted. That was removed after the first round of chemo.)
After the 'B' cycle, we'll get a PET, CAT, endo, and colonoscopy to check progress. The last 2 tests should occur about 3 days prior to the next 'A' cycle - as I'll need to be out of the nadir from the 'B' cycle (there's a chance of bleeding etc when conducting those tests, so I 'assume' you don't want to do that when you're at your low point WBC wise.
I also had a chest Xray and an EKG, I assume those were to check for any impact of the Adrimycin - which is known to be tough on the heart.
We talked about me going out for a bicycle ride this week - and he was all for it. So - assuming I continue to feel the same, I'm looking forward to getting back on the trainer tomorrow (didn't ride at all last week due to vacation), and then getting a good ride in after work on Thursday.
Went to work after that (first time in 2 weeks - chemo, then vacation), and got a little caught up. Headed home around 6:45pm, and then I'll do some more later tonight.
Oh, as I was tugging on my beard in the waiting room (yeah, about a 1.5 hour wait), I noticed some hairs coming out - more than usual. Seemed to be pretty consistent. Did a check on the back of my head, just lightly putting some hair between each of my fingers with an open hand, and then putting the fingers together (palm still outstretched), and moving away from my head. Sure enough, some hair seems to be coming out. Seems in line with what my roomie for the first day (Steve - an MCL'er that just finished his 1st 'B' cycle) experienced. He found his hair coming out a bit before he went in for his 'B' cycle, so he shaved. Still had eyebrows, etc. but why have the clumps. I'll do the same, once a little more goes... The kids have never seen me without a beard, and I've had a moustache since 16. My hair is suffering from natural attrition, but this will be a new look!
08:21:23 pm, Categories: Treatments, 33 words
Day 14 (Sunday) Post Chemo Day 9
Good day at home. No back/hip pain in the am, had a good day.
Church, mowed the lawn, did around the house stuff, went to celebrate my brother's bday, all good stuff.
05:47:43 pm, Categories: Treatments, 83 words
Day 13 (Saturday) Post Chemo Day 8
Woke up feeling good. No back or hip discomfort.
Packed up to go home, grabbed some breakfast, and I even drove home!
Feeling pretty normal as a matter of fact!
Good day, felt a bit beat toward the end, but then after a quick rest putting the kids to bed, I feel good. Sense I'll be up for a while... (It's 11:30pm now.)
Some back/hip discomfort settled in again, but not much. It was at around 7pm, and didn't require a Tylenol.
05:46:15 pm, Categories: Treatments, 236 words
Day 12 (Friday) Post Chemo Day 7
Watching - as this is start of the Nadir (7-10) days after chemo starts you are at your lowest point of resistance. Your WBC counts drop, as your body is getting the impact of having chemo beat it up. After the nadir, it starts to recover, and your counts should go up, allowing you a brief recovery period, and then back for the next round of chemo.
Have some lower back and hip pain, as yesterday, but not bad. Took some Tylenol during the day to ease that. Just made me walk a little funny - like I'm a bit older than 38...
Just stayed in the water at about waist deep today, just to watch the kids boogey board. None for me today - I've had my fun, and I think I'm listening to my body a bit and it's time for me to recover some. Napped on the beach for about an hour in the am, and rested about a half hour in the pm. Not real tired, but some.
At night the soreness came back again, and took some more Tylenol. Again - not too bad, but enough to want to take something (I'm not a big fan of pain).
Had pizza and non-alcoholic beer for me, with Linda, Jeff, Chris, and John and Steph and kids who came down to LBI for the weekend. Great to get together and kick back.
Went to bed exhausted at about 11pm.
05:38:42 pm, Categories: Treatments, 232 words
Day 11 (Thursday) Post Chemo Day 6
The day went well - same story as it had been, so I was happy!
In the water, boogey boarding like crazy, great waves. Checking temp, etc.
Energy is good, no nausea, etc. etc.
Got my blood taken again, probably get those results next week. Tuesday's blood work came back good - WBC count was 14 I believe, platelets were good, etc.
Towards the evening, I had some lower back pain, kind of like I did something stupid and pulled my back a bit. But it was accompanied by some hip discomfort as well. Kind of weird when I walked, like my hips were a bit stiff. Figured it may be related to overdoing it on the board today - and the good waves we had!
Chris figured it out - the Neupogen can cause bone soreness. It's because it's pushing the bones to make WBC's, and the stress of that can cause the pain. The other interesting thing is - an adult only produced stem cells in the flat bones (hips and sternum). A child produced stem cells in all bones, but as you age, it only happens in your flat bones. So - seems to make sense that the hips would be impacted. We'll verify with the Dr. on Monday, but it was one of the side effects mentioned on the Neupogen shots...
It's not that bad, and they said you can take Tylenol to quiet it.
10:39:13 am, Categories: Treatments, 43 words
Day 10 (Wednesday) - Post Chemo Day 5
Happy to say nothing new to report. Feel good.
Went in the water again! Same story - feel like a completely normal person. Checking my temp 4-6 times a day, and it's good. It varies by about 1 degree throughout the day, but is always under 99.
10:38:12 am, Categories: Treatments, 91 words
Day 9 (Tuesday) - Post Chemo Day 4
Status quo - good.
Temperatures are good. Went for a blood test - results s/b in tomorrow. Need to watch the WBC count.
It seems that my stomach is much better if it's full. So... Eating well...
Got the results of Friday's blood work, and the WBC counts look good - so in the water I went. Didn't spend much time fully submersed, but I did do some boogey boarding! All energy has been restored, and I feel like a completely normal person on vacation - ok, except I'm not taking in any alcohol.
07:49:04 am, Categories: Treatments, 71 words
Day 8 (Monday) - Post Chemo Day 3
Doing well. Status quo - quite pleased!
Started getting energy back.
Chris is giving me my Neupogen shots daily, that's going quite well - can't even feel them going in. I'm hoping those make a big difference in recovery.
We went to the beach, but I stayed out of the water, not knowing what my WBC counts were. Want to take it easy... Staying out of the water hurts - I love the ocean!
07:47:17 am, Categories: Treatments, 172 words
Day 7 (Sunday) - Post Chemo Day 2
Same story as Saturday (Day 6) - felt good, some nausea, mostly at night - around 6pm - but it went away with some food (burgers!).
Went on vacation! We went down to LBI (Long Beach Island), at the NJ shore for the week. We had planned the vacation before the cancer was diagnosed, and we figured it would be a great chance to recover from the chemo, and get a feel for how I'd be feeling, etc. We stayed at a friend's house (Eileen and Ian) that we've 'rented' off and on since 1997, and we stayed with Linda and Jeff and family. We had an awesome time. I'll update how I felt etc. each day.
In general, I took it easy. On Sat and Sun I felt a bit out of it. A little slow, but nothing major. Wasn't sure it if was me, the chemo, the drugs, etc... So, I took it easy for the most part. Chris drove to the shore, and I was allowed to do light moving of the packed stuff.
07:13:16 pm, Categories: Treatments, 164 words
Day 6 (Saturday) - Post Chemo Day 1
Chris gave me a Neupogen shot this am (in the arm), didn't even know it was in - she's a pro. This will help to boost my White Blood Cells (WBC) after chemo kicks them down.
Feeling pretty good. A bit tired, nothing major. Eating pretty well, smaller meals. Need to drink more. I feel some nausea at times - can't figure out exactly the pattern. Seems to be more when I don't eat! Around 6pm or so, if I'm hungry, I start to get a little out of it - eating seems to help. Again, smaller meals. Taste is fine, but some foods appeal and others don't - whereas I'm usually an omnivore.
Taking temp regularly - need to watch that. Also, since I had the 'temporary' cathater out yesterday, need to take it easy so as to not rupture that site today. I'll get the regular Hickman line in next time - then it'll stay with me through treatments.
Glad to be home with the family...
08:24:03 am, Categories: Treatments, 259 words
Day 5 (Friday)
Pretty good night sleep last night.
Got the last of this round of chemo around 1am.
Then the Adriamycin push - three vials (red colored - that cause your urine to turn 'kook aid colored' as one of the nurses accurately predicted - almost immediately.
No reaction to those, and that was done by around 2am or so.
Blood levels show my magnesium is low again (apparently a normal chemo side effect), so I'll get that drip in a bit, and that will go for an hour. Then Dr. Hsu (pronounced Shoe) will check me out, and then they have to remove the 'port' that's in me. Oh, and we have to practice giving me Neupegen shots (with Saline of course) - Chris should enjoy that!
I got some great feedback that 'what I'm feeling' or what I'm going through emotionaly should be included in this blog. Intersting enough, right now I'm viewing this as a task I have to do. It's similar to the Merrill Lynch training program I did for 4 months back in '93. You know it's gonna be hard, take time, and it will be beneficial. This of course his a much higher payback!
One little bit of anxiety was around the fact that I'm almost done week 1, but I have 5-7 more of these to go Again - gotta do what you gotta do!
Got released around 12 noon, went to get blood levels done by the local onc, so we have those for a baseline.
08:35:54 am, Categories: Treatments, 462 words
Day 4 (Thursday)
Took a 5ml Ambien last night around 10:30, after eating grilled cheese and a sorbet. Not sure if it was the food on the stomach or what, but it didn't make me go to sleep. Had a rough nite - just getting up a lot, etc. No nausea or anyting, but my roomie and I just kept exchanging pleasantries - he had a similar nite. However - it did impact motor skills a bit - as I felt myself being a bit unsteady.
Still feel great. Should get my last Cyclophosphamide treatment at 10am, and then Vincristine, Adriamycin, and Rituxin later today.
The nurses have been great - and they're warning me the Rituxin is the one to watch - if I have any response to it - let them know asap, so it doesn't built up - and they can taper it off. Side effects are chills, fever, etc - basically keep them in the loop - and they monitor you all the time.
I should be released tomorrow am if all goes well. They're going to try to bump up the 'pushes' - the shots with the 3 drugs I get today, a little earlier to make sure I get out on time.
Delaying the bike ride today, as I've gotten my 10am Cytoxin, and that will go to 2pm.
Right after that I'm getting some pre-meds for the Rituxin. That should be a benadryl iv, tylenol, and some other stuff (to be documented). Then I get the Rituxin, and that they need to monitor for the side effects listed above. After that, the Vincristine and Adriamycin. So, today's a little different, and I'm a bit anxious. The nurses are great - and stress keeping them posted about what I'm feeling as I get stuff administered.
Dr. Goy stopped by this am for a quick check, all looks good.
Got the Rituxin at 2pm-ish. Comes in a big glass container that they hang on the rack - old fashioned... First you prep with a benadryl iv, and tylenol to ward off any ill effects. (The benadryl makes you drowsy, which is nice, but you can't really sleep, as they check on you everyso often for reactions, then the drowsines wears off, an I just poppedin a movie. Rituxin was delivered at 50ml/100/150/200... until 400 - to monitor you for adverse reactions to it (rash, itching, breathing issues, etc.). Got up to 400 withouth any issues. Took a couple hours to down the bottle. That one's down!
Next is the Vincristine and Adriamicyne - s/b at around 12-1am tonight.
Gonna check out which sleeping pill to go with tonigh, not sure if i want the 10mg, as I may want to be awake for the 2 drugs tonight - or i may have to be, not sure. I'll check with the staff obviously.
That's it for today - doing some mails now....
03:48:34 pm, Categories: Treatments, 374 words
Day 3 (Wednesday)
Woke up around 4am, as my roomie was having some discomfort. Up for a bit, then zonked out again until around 7am.
Breakfast is ordered (Belgian Waffles), do some mails, etc - then hopefully a bike ride, shower, and visitors.
Still feel great. No nausea, no fatigue. Digestion is fine, appetite is good.
Did an hour and a half conference call, bunch of e-mails, some reading, 40 minutes on the bike, some visitors, more mail, more visitors, and now a late dinner (9pm).
Going to take a sleeping pill tonight to counter the steroid effect. - got the red (5mg Ambien). I hear it can be quite effective, something about losing motor control. We'll see.
Felt a little tired today, not sure if it's the lack of sleep, or the drugs.
Talked to Dr. Goy every day - he gives a once over, and checks things out. I need CBC's and blood work 2x/wk after I'm out, and I'll be taking Neupegen (sp?) every day to boost the WBC count. Need to stay out of the sun (antibiotics and chemo), and no alcohol (expected, but chemo/alcohol/liver is not a good mix).
The kids got to see me today, and that was good. The facility here is great, and they give you proper pj's, so it's not as stark as being in a hospital gown (they even have cool little pictures on them of all types of doctor stuff). The kids made me cards and pictures, which were promptly displayed on the walls - brightening up the room.
No live flowers are allowed, nor are you allowed to eat raw veggies or fruit - as you don't want to have any additional bacteria involved.
Note - the glands that were evident on my neck have noticeably diminished. That really started yesterday (Tuesday - day 2). So something seems to be kicking in. My right armpit is still a bit swollen - and that's something that just started up last week - as far as being more visible. I had seen activity there on the PET scan, so no surprise. I'm of course interested in the full blood work.
I've/we've gotten tremendous support from family & friends (recent and past, college and employment, you name it), and for that I'm/we're incredibly grateful.
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My Treatment Entries
I'll review the treatments I'm getting, what happens, and how I feel. This should help let others know a little about what to expect. NOTE - everyone reacts differently.
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