Bob Czako Providing Support

Date sent: Tue, 6 Feb 1996 09:05:35 -0500
From: rczako@interserv.com
To: bmt-talk@ai.mit.edu
Copies to: mistewar@cln.etc.bc.ca
Subject: "Picking yourself up" (Czako)
Send reply to: bmt-talk@ai.mit.edu

On Mon, 5 Feb 1996, mistewar@cln.etc.bc.ca (Mike & Kendall Stewart)
wrote: > Hey Bob, How about giving one bummed out woman the
secret to >picking yourself up. I have a pretty wicked infection these
days and could >use the keys to Narnia!!!

Dear Kendall,

For me the secret to "picking myself up" has two parts:

1) STRIVING TO THROW AWAY THE NEGATIVE THOUGHTS (or at least reduce them)
2) DISTRACTING OURSELVES VIA A LITTLE "RETAIL THERAPY"

1) STRIVING TO THROW AWAY THE NEGATIVE THOUGHTS

We need to rid ourselves as much as possible of negative thoughts by
realizing that whatever is getting us down may be just temporary and
that we could very well be better soon. For instance, this morning,
after not having blood clots in my pee for five weeks I noticed that I
had passed a blood clot. At first it really bummed me out - recently I
spent four awful days, including Christmas and my 32nd birthday, in
the hospital with a painful catheter in my bladder.

When I saw the blood I immediately started to worry and I imagined how
terrible it would be to hospitalized again or what it would be like if
I lost my bladder. I allowed myself to be upset and to vent the
negativism for about an hour, then I began then process of "picking
myself up". Instead of thinking about the worst case scenario - I
began focusing very hard on the best case scenario: that I will just
increase my hydration (whether it be by drinking more or by getting a
home I.V. again) and that the bladder problem will clear up in a few
days. Whenever the negative thoughts start to sneak back in, I try to
replace them with positive thoughts.

There is a great Bing Crosby song that includes the lyrics: "You've
got to accentuate the positive, eliminate the negative, latch on to
the affirmative and don't mess with Mr. In-between". I am not 100%
sure what "messing with Mr. In-between" means but the rest of the song
makes a lot of sense.

2) DISTRACTING OURSELVES VIA A LITTLE "RETAIL THERAPY"

The first part is distracting ourselves by doing nice things for
ourselves. I believe that when we do not feel good that we deserve to
do something special for ourselves. Often that means spending a little
bit of money on ourselves. Some people call it "Retail Therapy". Below
I have listed some examples and then explained the two elements
involved:

BUY SOME EXPENSIVE OR "UNHEALTHY" FOOD

Today, my wife and I went to the supermarket. I bought myself some
stuff that I love but that I usually skip because they are expensive
and loaded with fat (Italian chocolate called "Perguina Bocce", little
cans of goose liver pate and macadamia nuts). Sometimes you have to
throw all caution to the wind and buy the expensive can of mixed nuts
instead of the cheaper one that is 50% peanuts.

RENT, BUY OR BORROW OR BUY A FAVORITE VIDEO

Everyone has a favorite movie that they can enjoy watching again and
again. If you can think of a movie that makes you laugh out loud you
must get a copy. Chances are you can get it from your local video
store or library. If they don't have it, have them order it for you.
For me it is "Blazing Saddles" or "It's a Mad, Mad, Mad, Mad World.
Both of these comedies can do wonders to cheer me up.

IF IT IS SUNNY OUTSIDE - GET OUT OF THE HOUSE AND GO FOR A RIDE

This one isn't even really "Retail Therapy" because all it costs is a
little gasoline. If you don't feel up to driving yourself, call a
friend and have them drive you. I always used to wonder why my dog
goes so crazy when I tell him that I will take him for a ride. In
fact, all I have to say is "Hercules, do you want to" and he goes
nuts. I learned that like my dog, if I spend too much time in the
house, I start to get "cabin fever". I learned that it can be very
therapeutic and distracting to just drive around in the car and get a
change of scenery. Even when I was very immuno-suppressed and had to
stay in the car while she shopped - I would join my wife on trips to
the grocery store. I would be happy just looking at the people going
in and out of the store. Once I looked at the car next to me and
their was a Airedale Terrier doing the same thing!

FIGURE OUT WHICH ONE OF YOUR FRIENDS MAKES YOU LAUGH THE MOST AND CALL
THEM

Calling a friend can be really helpful and it is really inexpensive if
they are local. It can be major "retail therapy" if like me, your best
friends live in Atlanta and Budapest, Hungary. ATT Long Distance
Services just loves me.

CATALOGUE SHOPPING / T.V. SHOPPING

If it is hard for you to go to a store or a mall, order something from
one of the zillions of catalogs that we all get around Christmas or
from a "home shopping club"/infomercial. I am not supposed to go to
malls because I'm immuno-suppressed, so I use the phone and my credit
card a lot to buy stuff.

Don't buy something that you "need". Buy something that you "want"!
Buy something frivolous. Order a sweatshirt with some pithy saying
printed on it or a toy that you wanted when you were a kid and never
got. A few months ago I ordered a slot car set (little electric race
cars and a track) because I never had one as a child and I always
wanted one. I had a blast with it. My wife thought that I was nuts and
childish when she saw it - but soon she was playing with it too and
having a great time! I find that the angrier my wife is about what I
"wasted money on", often the more satisfying the purchase is.

FAVORITE RESTAURANT

Go to your favorite restaurant. If you are not physically up to it,
get "carry out". I have found that even the fanciest/most expensive
places that do not usually do "carry out" are happy to pack up a nice
dinner for you if you explain your situation to them. There is a fancy
schmancy Italian restaurant close to my home in Cleveland. They have a
"Fruita del Mare" seafood appetizer that I love.
All I have to do is tell them who I am and the mussels and calimari
are in the
pan. If I am well enough I go for a drive and pick up the food. If I
am to sick to drive, I just invite a friend over for dinner and tell
them to order something themselves and stop and pick up the goodies on
the way over.

BOOKS, CD's and MAGAZINES

Sometimes when I need to be distracted I go to one of those
super-duper big book/coffee places (eg. Barnes & Noble, Borders, etc.,
and I spend a bunch of money. Once again, don't buy anything too
practical. For instance, if you are a programmer, don't buy a
C-language manual, instead buy "The Frugal Gourmet Cooks With Wine" or
a Gary Larson "Far Side" cartoon book.

My weakness is the CD section. I already have way too many CD's - but
I still enjoy getting new ones. It may sound weird, but it is a real
thrill for me when I rip the shrink wrap off of a new one and pop it
into my CD player. Also, If I buy a CD and I end up not liking it, I
do not blame myself for spending twenty bucks for a CD that will sit
on the shelf and not be listened to. Instead I put the onus on then
artist and blame them for making a CD that isn't good - and then from
time to time I take the "mistakes" to a used CD shop and trade them in
at the CD store and get credit toward other CD's.

I also buy lots of magazines. These mega-bookstores often have a mind
boggling selection of esoteric magazines. I wouldn't be surprised to
find one called "Australian Volkswagen Fancier Monthly" or "Iguana
Digest". I can always find a couple of magazines that are strange
enough that I just have to have them (once again much to my wife's
chagrin!}

CONCLUSION

The key here is what I call positive distraction. Spend lots of time
shopping for what you are going to get. Spend lots of time playing
with and enjoying your "new toys". Finally, and most importantly,
don't ever feel bad about spending a little money on yourself.
Remember, it is THERAPY. Hey if we can spend $500.00 on a bottle of
Cyclosporine we can surely spend a few bucks for a copy of "Vanity
Fair". You need to develop the ability to "rationalize". I am really
good at it - though it was kind of challenging to convince my wife
that my purchase of a very expensive short wave radio prior to my BMT
was a good idea. However, even she had too admit that it was a
worthwhile purchase when she saw how much fun I had with it in the
hospital when I was very ill.

All of us that are battling cancer or other obnoxious diseases have
been through a lot of agony and will probably have some rough times in
the future as well (in my case it will be the GVHD and infections). We
deserve to enjoy ourselves as much as possible while we work on
getting ourselves healthy again.

Hang in there,

Bob Czako

From: rczako@interserv.com [SMTP:rczako@interserv.com]
Sent: Sunday, March 03, 1996 11:50 AM
To: Barry Sanders
Cc: BMT-Talk@ai.mit.edu
Subject: Czako: GVHD, SUN and UNCLE FESTER

Hi Barry,

I am sorry that it has taken me so long to get back to you! I have been lazy in
my letter writing lately.

In your letter you wrote:
>..after the transplant a person can not be exposed to sunlight because of GVHD.
>Did your doctors talk to you concerning this and did they say how long it would
>be before you could go outside in the sun? I live to be outside, and I was
>just curious.

Although my doctors did not talk about it, I have read that sunlight can
"reactivate" GVHD even after it has gone into a controlled state". In the short
term I am going to be very careful with the sun light because I really want to
get rid of the GVHD as soon as possible. I really hate the side effects of the
Prednisone and Cyclosporine - and if something as simple as sun avoidance can
help to control the GVHD, I will surely avoid the sun. I am not sure about
whether or not sun avoidance will be a permanent life long thing or not. We need
to ask a doctor or someone who is several years post-BMT and post-GVHD.

Sun avoidance is truly going to be a bummer because, like you, I am a "sun
worshiper". If I go to a beach I will have to rent one of those big umbrellas
and I will have to wear a hat and sunglasses when I go cruising around in my
Miata - but sun avoidance is a small price to pay. I am willing to give up the
sunshine if it means that I can be alive to enjoy the shade! (Hey, that last
sentence is a "keeper"! I'll have to file that one away).

When I was in college I bummed around Europe a number of times. I spent lots of
time basking in the sun in Greece and southern France. My skin turned dark and
my hair turned blonde. Oh, I was just plain beautiful!!! It was great - I was a
bronzed, blonde, babe-magnet. Now I scare children in supermarkets.

I figure that I have "had my time in the sun", I really enjoyed it - but now it
is over. I am glad that I toasted myself on the beach when I had the opportunity
to do so. Now I am resigned to a future wear I will have to wear those Katherine
Hepburn hats (you know, the wide brimmed ones with the scarf that you tie under
your neck!). Or maybe I will ask my wife to teach me how to porperly tie a
Hermes scarf and adopt the Grace Kelly look - that will work perfectly when I go
for drives in my little convertible!

Now I am pale, bald and chubby. I look like Charlie Brown on a bad hair day.
When I put my winter coat on, my "cushinoid" features (that is the medical term
for the chubby face condition caused by Prednisone) make me look like "Uncle
Fester" from the Addams Family. I have actually scared children in the
supermarket. I am not kidding. In a Seattle supermarket a little boy took one
look at me and immediately started crying. I immediately smiled an involuntary
evil grin and chuckled a bit - Oh my gosh, maybe I really am turning into UNCLE
FESTER!!! Later on today I will try to run a light bulb with my mouth like Uncle
Fester. Who knows? After all of the radiation that I received last month - it
just may light up.

Barry, I hope that all goes well for you at Georgetown. I have heard that
Georgetown is a great place. I have my fingers crossed for a 6/6 match for you!

Earlier in the week the temperature hit 66 F here. Now it is snowing and really
cold (it is not Miata whether at all!) Everyone here was really bummed out by
it - but I enjoyed it because in Seattle it hardly snowed at all and I really
missed it. In your letter you mentioned the Indians. Well, to be honest, I am
really not a big baseball fan so I am not too concerned about the Indians -
although I hope that they do well 'cause it is good for the city.

If I can help with anything, drop me a line. Keep in touch and let me know how
you are doing.

"With a handshake in thought"

Bob

Date: Wed, 31 Jan 1996 11:47:09 -0500

Subject: Dear Kate, from Czako

Dear Kate,

This letter is a bit "long winded", but I hope that you find something useful in it. Like you, I had to face relapse and a second round of obnoxious treatments. But take it from me, going "though the ringer" a second time can really be worthwhile. You can win!!

I know exactly what it is like to have the "wind knocked out of my sails" just when things are going well. After my first transplant (auto for NHL), the doc’s told me that I had achieved practically total remission. That was in February of 1995. Everything was going great. I got a great promotion, my fiancée and I bought a house, we bought a dog, we were talking about having kids (I had some sperm frozen before the BMT), and we were planning our big wedding. Everything was super.

Then a few weeks before the wedding I noticed that I had a huge lump in my chest. We did not tell anyone until after the wedding since we wanted everyone to have a good time. After the wedding, when we were taking pictures in the church, I collapsed and passed out for a few minutes. I told everyone that it was just post-BMT weakness. Baloney! I had a huge tumor in my chest and I could hardly breath.

Anyway, a week later my doctor told me that I had almost no chance of surviving. He did not even want to treat me. Of course, I cried at first. Then I pulled myself together and said "Bull**** doctor, I just got married, I am just 31 years old and I refuse to give up". I want to "run the gauntlet again".

I did my own research and found that the Hutch in Seattle would help me if I had perfectly matched sister and if the Cleveland Clinic could debulk the tumor first with Cisplatin. My doctor in Cleveland said that the chances of having a 6/6 matched sister and having the debulking work were very small. I said that I did not care if the chances were nil, I still wanted to try. Anyway, both of my sisters matched me perfectly and the Cisplatin worked great (even though it still makes my ears ring). I came here to Seattle, had a second transplant (allogenaic this time), and now there is no trace of the lymphoma in my chest.

Don't get me wrong. It wasn't easy. I have been here for more than five months now and the only way to describe the process is that it really sucks. We all hate puking, not sleeping, not being able to eat or eating to much (Prednisone makes me eat like a pig), etc. Sometimes, I eat so much that and get so bloated that I feel like I could undo my belt and let my abdomen rest on the floor next to couch that I am laying on. My chest is so full of painted lines and tattoos from the radiation therapy process that I look like something out of a bad science fiction movie.

I spent four days in December (including Christmas and my Birthday) with a huge catheter in my penis. I had "Dr. Mengele" pumping blood clots out of my bladder with a huge syringe. It was awful.

At one point I had a bad lumbar puncture and got "postural head-aches" that made me puke.

Now I have GVHD, "post-shingles herpatic neuralgia" (a fancy way of saying that my back itches like crazy), nerve damage in my hands and feet, and my face is so puffy from Prednisone that I look like a cross between Charlie Brown and Uncle Fester. But you know what?

I AM ALIVE !!!!! ALL OF THE TORTURE WAS WELL WORTH IT!!!!

I get to go home and see my Mom, sisters and friends again. I get to go home and live in my new house, drive my Miata, play with my dog and paint my ugly abstract paintings. I am happy. I did not think that I would ever be happy again. I am still very nervous about the future, but once again I can laugh, enjoy my life and be happy.

I realize that I will be weak for a long time, the nerve damage may be permanent and that the cancer can come back. Heck, the GVHD might get me eventually - or some stupid infection. But I figure that I will cross those bridges, if I have to, when I get to them. Who knows, maybe six months from now the FDA will approve some monoclonal antibody drugs or a new GVHD drug will become available. Maybe the GVHD will "burn itself out".

I figure life is fun and worth fighting for.

Don't let the prospect of additional treatment get you down. There will be obnoxious side effects, postponements of treatments, pessimistic doctors that will scare the hell out of you and other various road blocks and obstacles. The side effects of the treatment will be obnoxious. But you have got to hang in there and keep on fighting. The whole process is like a chess game where you have lost your queen and you have got to try to march one of your pawns across the board, get your queen back, and WIN THE GAME!!!!!

See ya,

Bob Czako

Webmaster's note: Kate Finn was CeltGirl on BMT-TALK. She passed away Feb 9, 1996.

About Kate Finn (CeltGirl)

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Bob Farmer - robert.farmer@comcast.net

Last Updated on 07/17/03