Fighting Mantle Cell Lymphoma(All Posts)

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!

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!

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.

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.

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!

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.

Felt great....

Merry Christmas!!!

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!
Our hearts go out to all those going through illness, etc that can't be home on Christmas.

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.

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...).

Here's a pic of me and the kids when starting:

And here's a more recent one:

Difference, about 6 months, an extra 15 pounds or so, and 7 treatments of R-Hyper-CVAD, and no more MCL.

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.....)

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.

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.

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.

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...

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.

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?
Is it simply a virus?
Is it a bacteria I can treat with antibiotics?
Will the Hickman get pulled?

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.

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...

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!

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!!

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.

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.

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....

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.

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.

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.

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.

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!

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.

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.

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!!

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.