Bob Czako's Better Days

Date: Fri, 9 Feb 1996 09:27:39 -0500
From: rczako@interserv.com
To: Bmt-Talk@ai.mit.edu
Subject: Bob Czako - COMPLETE REMISSION!
 
Hello everyone!!!
 
This week I had my final discharge conference at the Fred Hutchinson Cancer
Center (The "Hutch"). Today at my final check-up, my doctor gave me a letter to
give to my oncologist at home. Even though it had plenty of scary stuff in it
about the possible dangers of relapse, immunosuppresion, GVHD, etc., I really
enjoyed reading the following sentence:
 
"At this time the patient is considered to be in complete remission of
his lymphoma with controlled chronic GVHD"
Hoorah !!!!!
 
I read that sentence over and over with a big, big smile on my face! Last May,
an oncologist in Cleveland basically "wrote me off" and told me that I should
prepare to die. Now I am in "complete remission" with "controlled" GVHD. I feel
like it is Christmas today!
 
The last sentence of the letter reads:
 
"We look forward to seeing him in Seattle to perform his one year
long-term follow-up evaluation"
 
It has been a long time since I allowed myself to make plans that far into the
future. Now I can finally allow myself to think of the future in terms of months
and years and not just days and weeks!! It is so nice to read that the doctors
at the "Hutch" actually expect me to be around a year from now.
 
I realize that I am not "out of the woods" yet. There is still plenty of danger
ahead. I feel like I am walking through a mine field and I have passed the most
dangerous part where each step could have been deadly. There are still plenty of
mines ahead of me (ie. relapse, infections, GVHD) - but not as many as before.
 
I just wanted to thank all of you for your support. The members of this forum
have been invaluable to me during my battle so far and will continue to be so in
the future as I negotiate the post-BMT "mine field".
 
Tomorrow morning, I will go to the Swedish Hospital's Tumour Institute for a
final dose of radiation to my chest. I was given 4000 RADS of radiation over the
last twenty days in order to "sanitize" the area where the nasty lymphoma tumor
used to live. Then I will go to the Hutch for an infusion of platelets (the
radiation knocked my platelet count down). After the transfusion, I am going to
the airport and catching a flight to Cleveland.
 
Thanks!!
 
Bob Czako
From: rczako@sprynet.com [SMTP:rczako@sprynet.com]
Sent: Sunday, October 06, 1996 9:56 AM
To: BMT-TALK@ai.mit.edu
Subject: Bob Czako: Back From Seattle and Back on BMT-TALK
Hello everyone,
 
Well I am back from Seattle and I have resubscribed to BMT-TALK. I do not know
how long it will take for me to actually be re-connected. I signed off while I
was gone so that my mail-box wouldn't explode. Because I do not know when I will
actually begin to get the BMT-TALK mail - please send mail directly to me for a
few days so that I am sure to get it.
 
Being poked, prodded, CAT scanned, Bone Marrow Biopsied, I.V.'d, blood tested,
bone scanned, lip biopsied, skin biopsied, pulmonary function tested, urine
tested, and neurologically tested at the HUTCH wasn't much fun.
 
However, the following were indeed fun!
 
- Being treated to lunch by Bob and Carol Farmer at Ivers Acres of Clams.
 
- Having a gourmet breakfast with Chuck Hart at the ritzy Sorrrento Hotel.
 
- Visiting with Percy at the Hutch
 
- Visiting with Jeff Smith (the "Frugal Gourmet")
 
- Spending a Sunday afternoon in Vancouver B.C. (and discovering an excellent
Hungarian restaurant there)
 
- AND MOST IMPORTANTLY: Hearing the doctor say that my CAT scan showed no
evidence of lymphoma!!!!!!! (Hoorah, Hoorah !!)
 
 
The strangest thing that happened was when they diagnosed me with Gluco
Corticoid Steroid Induced Diabetes. Basically it is Type II adult on-set
diabetes that is caused by Prednisone. Now I have to stick my fingers three
times a day to check my glucose level and take insulin shots twice a day! It
kind of sucks - but it is still one heck of a lot better than relapsing!!! HAVE
ANY OF YOU EVER DEVLOPED DIABETES BECAUSE OF STEROIDS?
 
I still have GVHD in my liver - so I need to continue taking FK-506 and the
nasty Prednisone. The Prednisone has really wasted my leg muscles - so I think
that I am going to try a little physical therapy soon. Yesterday, I fell down in
the parking lot of the supermarket and I had one hell of a time getting back on
my feet again.
 
I have some funny stories that I will share with you all soon.
 
Have nice weekends everyone!
 
Bob Czako
From: rczako@sprynet.com [SMTP:rczako@sprynet.com]
Sent: Friday, November 29, 1996 9:10 AM
To: Judith Lear
Cc: BMT-Talk@ai.mit.edu
Subject: CZAKO: Humor & Happy Thanksgiving to Judith and BMT-Talk folks
Dear Judith,
 
A Happy Thanksgiving right back at ya Judith !!! - and to all you fellow BMT-ers
as well!!
 
Judith, you are right - we sure do have a lot to be thankful for. I am alive, I
have great new friends (LIKE YOU FOR INSTANCE!) and I am going to eat shitloads
of turkey tonight!!!! A year ago in Seattle, my Thanksgiving dinner consisted of
Viscous Lidocaine, Dilaudid, a little Cream of Wheat and some Pork Rinds.
 
Cathy is upstairs cooking for the twelve people that are coming over. We have
invited a motley crew of human flotsom and jetsom over for dinner (I'm just
kidding, the people are all super folks). It will be a fun crowd! We have some
rather strange (yet interesting) family members and friends. I am looking
forward to some really stimulating conversations - that is until the Turkey's
tryptothan kicks in a we all nod off.
 
I am hiding out in my studio. You just do not want to be around my wife Cathy
when she is in full "preparing for guests mode". I love her dearly, but she
temporaily goes nuts and becomes quite dangerous during the pre-party
preparation process. I will never understand it. If any one of the people that
are coming over tonight were coming alone - we would not have to worry about the
place being spotless. However, for some reason, when the same people come over
"en masse" everything has to be perfectly clean. Cathy is actually making me
vacuum my studio. I tried to explain that oil paint stains are not vacuum-able.
That just got her madder. I think that my best bet is to just block off access
to my studio so that no one sees my artistic pig sty and my wife isn't
embarassed by it!
 
After more than a decade together I have learned to stay away from the kitchen
and Cathy when she is cooking for lots of people. There are just too many knives
in there and I don't want to end up looking like a circus act gone tragically
wrong. Actually, with my screwy looking hair I already look like a circus act
gone awry (kind of like Bozo the Clown having a bad hair day). I have got a
system though - last night, I brought some food down here to the studio so that
I don't have to even have to go near the kitchen all day today! I think that I
will be safe.
 
Judith, in your letter you mention "loosening pants". Heck, I have discovered
something even better. I am wearing Sans-a-Belt pants. They are like khaki
Dockers with an elastic wasteband. There is nothing more apropos for a food orgy
than Sans-a-Belt. I can imagine a whole new holiday meal based advertising
campaign for Sans-a-Belt. It would show a bunch of stuffed post-holiday meal
revelers loosening their pants in a very embarrasing manner while one person
(wearing Sans-a-Belt of course) would look at them disapprovingly and say "can
you please pass me the turkey". Hey, maybe they can use that "can you please
pass the jelly" guy from the Polaner All-Fruit commercials!
 
Well, it is time for me to go shoot myself up with extra insulin so that I can
have pecan pie with my turkey tonight!!!
 
Have a super Thanksgiving everybody - Gobble, Gobble, Gobble
 
Here's hoping that you always end up with the big end of the wishbone !!!!!
 
Bob Czako
From: rczako@sprynet.com [SMTP:rczako@sprynet.com]
Sent: Thursday, December 19, 1996 7:14 AM
To: bmt-talk@ai.mit.edu
Subject: CZAKO: Happy to be alive this Christmas.
Thanks for the nice words Tony,
 
Yup, my back does hurts a lot - but the pain is lessoned by the knowledge that
this year I will spend Christmas with my family at home and not in a hospital on
the other side of the country with a hickman hanging out of my chest! I am just
thriled to be alive and, even though I am in pain, I am just so happy to be here
(and remember that "here" in my case means Cleveland in the winter).
 
It sounds strange - but even though I am in pain, I "feel good". I think that
the ability to appreciate "feeling good", or even "feeling just O.K." is
something that is very different in those of us that:
 
1) Have been at some point very close to death themselves
 
2) Have loved ones who were very sick.
 
3) Have experienced mind-boggling pain, in my case:
 
postural headaches (from a goofed-up lumbar puncture)
bone marrow aspirations (by an idiot intern using only lidocaine)
passing monster blood clots via my urethra (think square peg/round hole)
fractured vertebrae (due to prednisone induced osteoporosis)
 
In fact, the definition of "feeling good" is probably different for many of us
who know what it is like to feel really super crappy. Everything is relative.
 
It is going to be so nice to have beef tenderloin, turkey and shrimp for dinner
at my 33rd birthday party this Saturday here at my home (Please don't tell my
endicrinologist (sp?). It sure beats having what I had last year at the Hutch in
Seattle: Busulfan tablets washed down with Strawberry Ensure - I get naseous
just thinking about it!
 
I remember, about a year ago, thinking about whether I would be alive or not
this Chrsitmas. Well, it looks like I have made it (I'll be careful to look both
ways when I cross the street his week!)
 
I wish you and your family the best holiday possible and all of the best in
1997.
 
Actually, I wish the same for everyone on the BMT-Talk list.
 
Ho, Ho, Ho Merry Christmas!
 
Bob Czako

I welcome your comments and suggestions.
Bob Farmer - robert.farmer@comcast.net

Last Updated on 07/17/03