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Personal Notes

Personal Notes


Hooray! It’s over!! A big hug for each of us from Dr. Goy that confirmed it!

When cancer strikes a family, it affects your whole family and it takes your family, friends and the best medical staff to get you through it.

On behalf of John and I, we’d like to extend our thanks to all that have been with us throughout the last 7 months. In the beginning of our journey, one of our closest friend’s, Jeff Byrne, said that we had an “A Team.” Jeff, how right you were!!

Eternal thanks to Dr. Goy and Coleen who reassured us that this was “fixable” and the wonderful staff on the 3rd floor over at the Sanzari Building. As John has mentioned in the past, the nursing and medical staff over at 5PE at the Hackensack University Medical Center are, hands down, the BEST around! Quality care, compassion and respect for the patient…you can’t find better anywhere else!

Without the support of our family and friends, this road would have been a rougher ride for us. For your assistance with research, childcare, dinners, work, visits to “Camp Hackensack,” inspiring cards and blog and email messages, taxi trips to Hackensack (at 3am), shoveling snow off the driveway as well as your endless prayers, we give you our heartfelt and eternal thanks. This was all a huge comfort to us to know that we were not in this battle alone.

To all those who are still fighting…..Keep up the fight….Stay strong……Stay Positive!!! We will continue to think of you and send many prayers your way!!!

More Thanks....

Thanks to everyone for their encouragement, especially in response to my recent good test results. It's just amazing how supportive everyone is, and how happy everyone is that the results are positive. Many thanks for your support!!

Note from a MCL'er

This is a note from an MCL'er (Steve Meyer) - that had was just about to get a Stem Cell Transplant. His message is clear, positive, and very encouraging. His message resonates with me, and I think it captures a lot of what those of us going through this (cancer in general) feel.

I am not happy to have this disease, nor is anyone who has it.
> Chemotherapy is not a refreshment, Bone Marrow Transplants are less fun
> than going to the lake in the summer. And having one's life ripped apart
> by a disease that has historically killed all its victims is not my first
> choice.
> On the other hand when you are surrounded by people who Love you, people
> who pray for you, people who bring you meals, send you cards, rake your
> leaves, cry with you, laugh with you, do your chores for you, shovel
> your snow all winter, cut your grass all summer, come over on Sunday to
> watch football with you, call you on the phone, pick up your medicine for
> you, drive you places when you can't, offer you their homes, offer
> support to your husband or wife, offer
> support to your kids, offer support to your healthy parents, offer
> support to your brothers and sisters, come over to keep you company,
> take you out to dinner, bring you books,cd`s,tapes,loan you their lap
> top, offer their friendship and Love.......
> When your kids tell you they Love you, again and again and again and cry
> at the thought of losing you When your wife or husband tells you they
> Love you even when you act like an idiot and they cry themselves to sleep
> at the thought of losing you. When you see your parents eyes at the
> thought of losing a child to this
> disease and they say " I wish it were me" and they mean
> it....................................
> When people you`ve never met pray for you, send you mail, encourage you,
> meet you for dinner, when the Doctor weeps for you cause he wishes he
> could do more.................... When the pain gets so bad it takes away
> your breath, or you get so sick you think you`re gonna die. I`ll tell you
> what I do. I thank God for my life just the way it is! I have had a good
> life, and I intend to live for many years to come. I plan on seeing my
> Becky grow up. Today she was the happiest little girl in the third grade,
> and so proud to read her grades one by one to her dad, who she has no
> doubt Loves her with all of his heart. I plan to see my twelve year old
> son's penmanship improve even if it takes forever and someday he will
> beat me in chess. I plan to see my my sophomore in college daughter
> someday grow up the rest of the way and get married and give me
> grandkids. I plan to see my parents finish their lives with their son
> alive, and I`ll bury them when they die. I plan to see my beautiful wife
> grow old, get grey hair, and sag, so I can Love her more then than I do
> now, and we can retire to Florida.
> Did we all get a bad break? Yes
> Do we have a right to complain? A little
> Would I change my life if I could? Never
> I`m glad you asked the question, and I pray that you and everyone else
> with this disease gets cured, and those who have died from this disease
> I plan to see them again. The quality of my life has never been
> better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
> !!!!!!!!!
> May God Bless all those with MCL and the loving caregivers and families.

'Chemo' Friends

A place to note some of the friends I've made on the 5th floor of HUMed:

Pedro. 74, Just starting RHyperCVAD in mid 10/05. Great attitude, excellent person - a great rooomate! Best to he and his family

Steve - MCL'er. 51, so he's close to my age - good barometer - and he's 1 cycle ahead of me (looks much younger than 51!). Doing the same protocol as me (R HyperCVAD) under the same doctor (Goy). Great parents (Murray and Barbara). He's taking well to the treatment too, tons of energy.

Mike - Renal (kidney) cancer. Great guy with a couple of really nice sons. Was my roomie for a few days on my first visit. Was having a tough time with his treatment, but they were going to back off and start again I believe. His older son is putting together a benefit concert that I'll have to post about.

xxx (patient) and xxx (husband) - B Cell Lymphoma. Really nice people, met them in Goy's office, and she's here during some of my stays. Having good days and bad days. Should be finishing treatment soon (as of 9/05).

Linda (wife) and her husband - patient. He had a mild heart attach while bike riding, while he was undergoing chemo (they're a bit older than myself, but makes you think you still need to watch it - i wear my heart monitor religiously when excercising). Linda's a trooper and incredibly upbeat and friendly despite the issues at hand.

Also found out one of my client friends from work's mother just battled a B Cell Lymphoma - using R-CHOP. She had a tough time, but she's got good support and will do well.

Our thoughts and prayers are with all of these fine people.

It's funny, Lance (Armstrong) writes that he now considers himself part of the cancer community, and that's something that won't go away. It's a weird feeling, you see someone on the floor, and it's like - "what are you in for?" - i.e. what do you have. You learn about theirs, they about yours, etc. Seeing others with shaved/bald heads when you're at the hospital means a bit more than when at home - you usually know what it's for (not a fashion statement).

Thanks...... please read

Thanks...... please read
I've been toying with how to handle this one....

MANY SINCERE THANKS to all the visitors that have come by. It's truly been amazing, and quite a blessing as you can imagine. I know it's not close, and I really didn't expect to see as many people - or have requests for 'when's a good time to visit', but I/We are of course very thankful for our family and friends that have come by.

Now - this is not a push for more people to come by! I felt compelled to thank those that have come by, and those that will, but I also know we all have many demands, this is a hike - and I'm only here for 4 days, I'm back home all the other times!

I also want to thank everyone that's posted comments or sent me notes offline. Again - this is truly appreciated, and very encouraging. (Again - not looking for more posts - just saying thanks!!)

I/We consider ourselves very blessed to be surrounded by some truly amazing people. Emily and I were talking in bed several weeks ago about why things like this have to happen. I told her that God works in strange ways, and I think sometimes he does things to showcase just how good people can be. Times like this give us an opportunity to see just how good people are. The doctors, the nurses, family, friends, strangers that offer assistance. From the diagnosis, it has by far been the most powerful thing I've experienced with this situation.

Finally, I had thought about thanking everyone by name in this post, but I realize that everyone involved has been incredible, and honestly, I don't want to leave anyone out. So, again, my/our sincere thanks to everyone that's called/written/typed/sent cards/posted/accomodated/helped/prayed/or thought about us. Each effort means more than you can imagine, and for that we are truly grateful.

I hope that this in some small way conveys what it was intended to.

Ok, I do need to single out one person.... My wife. As you all know, Chris has been amazing throughout all of this. Gathering info, making all the trips with me, coming to visit, keeping things going at home when I'm not there (not that she doesn't do that when I am home, but I like to think I add some assistance...), getting our vacations in order, everything.... Never mind giving me shots and not even making me feel them! Try that at home guys.

Many thanks Hon, you and the kids are my everything. Love you, John

Books We're Reading

We're reading some books on cancer and related issues, so I figure some notes here about them may be of interest.

First - thanks to Vinny and Jeannine for getting us started!

The first is 'The Chemotherapy & Radiation Therapy Survival Guide' by Judith McKay and Nancee Hirano. This is a great overview for what chemo's all about, what it does, what nausea meds are out there, what catheters are, nutrition, blood tests, etc. All in laymans terms - presented by the authors, who are both oncology nurses.

'Every Second Counts' by Lance Armstrong. I think it's a great book. The first chapter really hits home - especially if you have cancer. He gets a bit deep in it, into what his beliefs are etc, but he's got some great stuff there. And if you like cycling, some great stories about some events in the Tours.

more later (work in progress)


Thanks to everyone for the supporting comments - they really mean a lot to me and the family. Again, we can't begin to express our appreciation.


Hospital Staff

EVERYONE at the hospital has been great. This is to track who's who, and some info on them to help keep things straight.

7/25 HUMed Stay
3pm-11pm - Julie, 2 kids
11pm-7am - Denise, 11 yr old and 9 year old. Just in LBI for 2 weeks.
7am-3pm - Kristen, 8 month old, was just in LBI for a week (and now out for a week! - see her next time...
3pm-11pm - Katie - goes to LBI (there's a theme here...)

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