Bob's illness timeline

These are a few of the early posts from Bob on BMT-TALK. The intention is to provide a perception of the timeline of his illness and early treatment at the Hutch.


Re: BMT coming up



Hi Hans, 

My name is Bob Czako. I have relapsed Non-Hodkins Lymphoma. I had an allo 
transplant less than two weeks ago. My sister is my donor - we used her 
peripheral stem cells.

I am on day 12 and I feel pretty good.  My white cell count was only low for a 
few days but then the transplant kicked and my poly count went from 60 to 3,410 
in only two days!!  I really expected this experience to be worse. The doctors 
here at the Hutch in Seattle told me that I can probably go home in a couple of 
days. The side effects of the transplant have been mostly minor: my mouth and 
throat were sore for a few days, I got a nasty case of jock itch and my stomach 
doesn't feel that great.

The only serious thing that happened was I got dehydrated one day and my blood 
pressure fell to 58 over 40. But a couple of bags of fluids and red blood cells 
later and I was back to 120 over 80. 

I know a lot about BMT's because this is my second one. I had an autologous 
transplant less than a year ago, but unfortunately I relapsed in May 1995.

If you have any questions about the process, please drop me a line. I will try 
my best to answer your questions.

In the meantime, I hope that you don't mind some unsolicited advice:

1) Salt Water rinses really do a fantastic job of preventing mouth sores. It is 
hard to believe that something so simple and free could work so well. I did the 
rinses religiously and I ended up with only minor mouth sores.

2) Dilaudid is great for relieving pain from mucousitis (mouth or throat). The 
salt water can't reach deep in your throat so you will most likely get a rather 
sore throat. The sore throat makes eating really tough. I have tried a number of 
drugs for the pain. For me the drug called Dilaudid did the best job. They set 
it up for me in an IV pump that I could control myself.  The pump allows me to 
self administer small amounts of Dilaudid whenever I want. I am always very 
concerned about side effects. I asked the Pain Management Doc that set up the 
machine for me about what the worst side effect could be. He said "euphoria". I 
said well HELL! let me have it then. Of course, your Doctor may not agree that 
self administered Morphine or Dilaudid are appropriate for you, but it never 
hurts to ask.

3) Walk a little every day and use you spirometer. I have kept my lungs 
perfectly clear through two transplants by walking and sucking on the 
spirometer. The nurses will probably make you do both because they really work.

IF YOU HAVE ANY QUESTIONS DROP ME A LINE !!!!!   I WILL BE HAPPY TO HELP  

I hope that your transplant goes as well as mine!!

BOB CZAKO

 


Re: Baths & Dining at the Hutch



Hi Paula,

I am here at the Hutch for an allo transplant for NHL. I think that today was 
day 11 or 12. At first I was really dismayed about the idea of not having a 
bathtub in my room since taking a long hot bath is the best way for me to unwind 
and to forget about the day's stresses. In the hospital it is the only thing 
that really reminds me of home. HOWEVER - don't worry about the way they do 
baths at the Hutch. Actually it makes me think that I am at a spa. Each morning 
my nurse asks me when I would like to bathe and I give her a time. Then she 
tells me when my bath is ready and which room it is in. I go to the appropriate 
bathroom, where I find my name on one of the doors. Inside the bathroom is 
spotless!! It is like being at an expensive hotel. They lay out a variety of 
white towels for you and a white sheet on a very stable chair. The tubs have 
handicapped railings so getting in and out is easy.  The other day I forgot to 
take my soap with me just as I was mulling over the idea of just taking a 
soapless bath instead of going back to my room for it, my nurse knocked on the 
door and asked me whether I needed my soap. She noticed my soap by my bed when 
she was changing my bed clothes and was nice enough to bring it to me.

Paula, believe me, the Hutch is a real "class act". The nursing staff is just 
plain EXCELLENT. The Swedish may be great too - I don't know because I have not 
been there.

Also Paula you may want to consider the kitchens of both places. I have never 
eaten at the Swedish but I imagine that it is standard institutional fare. The 
food and the people involved in preparing it here at the Hutch are excellent. 
The Hutch kitchen is small and only serves the 20 bed BMT clinic here. The 
variety is great, the quality is high and the chefs are great. The other morning 
I ordered an ommlette because I needed something soft due to my raw throat. The 
chef, at my request, prepared me the most delicious cheddar cheese, mushroom and 
ham ommlette that I have ever had. She brought it to me herself and I willing to 
bet that it wasn't more that a minute or so from skillet to my bedside.

In a nutshell the folks here really do their best to make your BMT as bearable 
as possible. I am halfway through my second bone marrow transplant in less that 
a year - and I realy belive that a nice bath and a nice meal can really help to 
make the a little better.   

Well, I better stop writing a go to bed because the nurse just gave me some 
ativan and I dont want to fall asleep with my IBM thinkpad in my lap.

Good night,

Bob Czako 

Re: Baths & Dining at the Hutch



Dear Bob and Paula,

I had about the same treatment as you described while I was in RM 51 at 
the Hutch. After watching 8 hrs of the Discovery Channel and hours of 
news and Chan 9, the Seattle Public TV station, I was ready for a shower 
or bath every morning.  It was a good thing the OJ trials were after my 
BMT or I may have had a relapse.  It was like you said, Bob. I wish I could 
have enjoyed the food. They made me great apricot sluries.  The staff was the 
best, but I received excellent care while staying at 2 other hospitals 
since then - both of them under the Group Health HMO.

On Tue, 3 Oct 1995 rczako@interserv.com wrote:

> Hi Paula,
> 
> I am here at the Hutch for an allo transplant for NHL. I think that today was 
> day 11 or 12. At first I was really dismayed about the idea of not having a 
> bathtub in my room since taking a long hot bath is the best way for me to unwind 
> and to forget about the day's stresses. In the hospital it is the only thing 
> that really reminds me of home. HOWEVER - don't worry about the way they do 
> baths at the Hutch. Actually it makes me think that I am at a spa. 

 
> Well, I better stop writing a go to bed because the nurse just gave me some 
> ativan and I dont want to fall asleep with my IBM thinkpad in my lap.

I wish I could have used my laptop, but I was way to out of it to 
concentrate enough to us a key board. I recorded my blood test data most 
every day. I still track and graph my blood and other tests. Also I data 
base my drugs so I can remember what I used and what I am using. I 
recently discovered my lung tests show my lungs tranfer only about 70% of 
the gases they should at both the 1 yr and very recent 2 yr checkup. My 
doctor told me yesterday it probably is the results of the Chemo from the BMT.
It makes me a little winded when I play tennis. I was disappointed that it 
probably will stay that way. My lung capacity is better than normal so I can 
be thankful for that. 

This winter I hope to get back into skiing and next 
spring into hang gliding and wind surfing. Also I need a job. I took a 
disability retirement from my federal job a the Navy Yard. I was 
disappointed when I tried to get back on and was told I lost all my 
rights to my old job when I took the disability. Any of you know of a job 
for a old beatup ex-federal employee?  I can make up to 80% of my old pay 
with out losing my anuity. I have 35 yrs of electronics and computer 
experience. I worked these confusers since they were the size of a truck, 
had 32k of memory, and cost $560 million. They didn't even have a speller.

Bob Farmer      Brumerton, WA

Bob F./ Much Misc.



Hi Bob,

Thanks for your nice letter. No, I don't mind sharing our posts on the list, as 
long as other list members do not mind reading them - or at the very least 
junking up their electronic "in boxes" with them. 

I am posting a letter today to the entire BMT-Talk group which will ask some 
questions about how the list should be used. I am new at it and I want to use it 
correctly. 
===========================================================================
Yeah, I'm sorry that the Braves won myself. Even though I am not a big baseball 
fan, I am a Clevelander and it kind of hurts to see them get so close and not 
make it all the way. But heck, as long as they don't sell off all of their good 
players during the off season, they could always make a run for it next  year .I 
think that the Braves were in the World Series a couple of times 
in a row before they finally (and unfortunately) won. The Indians losing doesn't 
bother me. What makes me sick is to see the stupid Cleveland Browns losing three 
in a row (and once to an expansion team). They finally replaced Vinny Testaverde 
with Eric Zeier and Cleveland won.

Thanks for your concerns regarding my sleeping problems. LAST NIGHT I FINALLY 
HAD A GOOD NIGHT'S SLEEP BECAUSE THEY TOOK ME OF IV HYDRATION - HURRAH
HURRAH!!!! I did not have to get up to pee every 45 minutes. I was really 
starting to hate the nightly I.V. Now I have to drink 3.5 liters of Evian every 
day. I'm still peeing like a race horse - but at least it is mostly during the 
day!

But I have developed more Prednisone taper joint pain. About a week ago, I 
finally started to fall asleep when my left knee started to feel like it was 
going to explode. I have had lots of pain during the last few years, but this 
was unreal. I did not know whether to laugh or cry it hurt so much. I took some
tylenol - but that did nothing. I called the hospital and they told me to take 
Dilaudid (like synthetic morphine) and two Halcion (sleeping pills). All the 
pills did was make me a groggy, dopey, person with an aching knee. Finally, two 
hours later the pain subsided. Weird.

The day before yesterday, I woke up at  3:00 a.m. feeling like my knees are 
going to explode. It is really strange to have the middle of one's knees hurt. 
In a normal course of one's life I just do not think that part of the knee would 
ever hurt. It must be the Prednisone expanding or shrinking or eating away some 
part of the inner knee. It was like a big rat is chewing away the inside of my 
knee.

I got to the bathroom walking slowly and in pain - but then a few minutes later 
after standing up (and fortunately after pulling my pants up) I took a step and 
fell to the floor writhing in pain. My wife cam running out of the bedroom. I 
think that I scared the hell out of her. She relaxed when I told her that it was 
my knees and not something more serious.

When ever I tried to put pressure on a knee I just fell back to the ground. I 
eventually had to drag myself with my arms only back to the couch. My legs were 
totally unusable. I called the hospital and they told me that drugs do not 
really help joint pain very effectively but that I could take a Dilaudid for the 
pain (it is like synthetic morphine), an Ativan to relax and a Halcion to sleep. 
 
Even though I usually avoid all three of them, I took them all. The nurse was 
right the drugs did not do much for the pain. A half an hour later my knees 
still hurt like crazy but I couldn't see straight from the drugs.  But the nurse 
also mentioned that either heat or cold could help. ICE PACKS WORKED GREAT. I 
ICED UP MY KNEES AND THE PAIN WENT AWAY. I DON'T KNOW HOW IT WORKS AND
I DON'T EVEN CARE!!  BELIEVE ME I WILL EXTRA ICE READY IN THE FREEZER FROM NOW
ON!!!

You mentioned that you did not have the same concentration skills that I do 
after your transplant. You know what, during and after my first transplant I 
could hardly read a sentence out of a magazine. This time I can read just fine 
and write perfectly (except when my hands cramp up). I think that the ability
to concentrate and the loss of motor skills are very much related to the 
conditioning drugs that are given prior to the actual transplant. I find that 
the Busulfan and Phyoteppa that I got this time around didn't screw with my head 
as much as the VP-16, Cytoxan, Adrymicin, and Vincristine during my
first transplant.

I am glad that you liked my posting on statistics - it was fun to write it.

I bet that Jose Carreras was super. He is one of my favorites. PBS had a nice 
special about him last year. He is a really nice guy. My folks are both from 
Europe so I grew up listening to and attending the Opera. I just love Opera. I 
just bought a CD's of Die Fledermaus (a Strauss operetta or light opera) and one 
of highlights from Bizet's Carmen before I came to Seattle. Both are excellent. 

I have a CD of Jose Carreras singing popular songs - I will check to see if "Be 
my Love" is on it. Did you know that your Seattle Opera is currently staging a 
production of Carmen?  If my immune system wasn't so weak, I would surely go.  I 
even called them to see if I could sit in on a dress rehearsal, but they said 
that the theatre would be full of people then too. 

Good luck with that eye. I am sure that the doctor will fix it up for you. 

Boy oh boy, the idea of quitting Prednisone sure sounds good to me!

A local BMT survivors night would be fun - I am looking forward to it. Maybe 
sometime later in November. Chuck Hart is interested too - even though he may 
punch me in the nose for insulting Swedish Hospital !!
--------------------------------------------------------------------------
P.S. I just got home from my weekly meeting with my doctor. All of my blood 
counts are good, my creatnin and bilirubin are fine. My skin looks better and 
best of all they are cutting my Prednisone from 50mg to 30mg a day! Well my 
stomach will feel better but I better make extra ice bags for my knees!!!

Take care,

Bob Czako 

Leaving Seattle will be difficult!



Howdy Chuck,

Well, my doctors tell me that if I am a good boy and I don't get myself sick 
somehow, that I may be paroled early. They have an "early release" program that 
lets some patients go home around Day 60 (I am currently at Day 42 or so). That 
would have me leaving around Thanksgiving. But, then  I have to come back for a 
week or so of tests around day 80. I think that they are going to give me a 
CAT-Scan then to see if the transplant did the trick or not. Boy oh Boy, that 
may be a nerve racking day! Even though I am doing pretty well so far, I have a 
feeling that I will be here through Day 80 whther I am doing well or not.

My wife is really keen on the idea of leaving ASAP so she wants me to shoot for 
Day 60 to leave. However, part of me is simply afraid to leave Seattle. Yup, you 
heard me right. Most people probably get sick of being here - but not me.

I feel safer and more comfortable here close to the Hutch than I will in 
Cleveland. I really like and trust my doctors here. That has not always been the 
case in Cleveland. I think that I am going to have to talk to the psychologists 
or psychiatrists at the Hutch about this . I wonder if any other transplant 
patients become as "attached" to the Hutch as I have. It might have something to 
do with the fact that I have had such bad experiences at the Cleveland Clinic. 
No doubt about it, I have been spoiled by the Hutch and I don't like returning 
to a lower quality health care environment in Cleveland. 

They make everthing very easy and convenient for the patients here at the Hutch. 
Here I live 8 blocks away. I always find a parking spot at the Hutch and I don't 
have to walk far to get to the elevators to the fifth and sixth floors. In 
Cleveland, I have to drive for 45 minutes, fight to find a parking spot, and 
then walk pretty far to get into the hospital. If I am too weak to walk, I have 
to wait for a long while to get someone to cart me to where ever I'm going in a 
wheelchair. There is an upside to going home though - I can drive my little 
silver Mazda Miata. I love that car and I really miss driving it!!!

In Cleveland almost everything is harder. All of the resources which are lumped 
together at the Hutch on floor five and six are spread over the Cleveland Clinic 
"campus" in Cleveland. The appointments that takes me an hour to accomplish at 
the Hutch will take all day in Cleveland.

In Cleveland, my medical files are often either incomplete, in transit, in 
disarray or just plain lost. The Hutch is much better organized.

Alas, I am going to need to receive a couple of lumbar punctures in Cleveland to 
finish up my methetrexate conditioning. Here at the Hutch the "pain & tox" guys 
almost make it fun. They use great drugs to prevent me from feeling any pain.

While the last time they did a lumbar puncure to me in Cleveland, the doctor  
used nothing but a local, it hurt like hell and I ended up with spinal bleeding 
and postural headaches which made me puke like an ancient Roman visiting the 
vomitorium after a particularly big feast. I had to get an emergency blood patch 
done to my spine in order to stop the puking headaches.

As you may have guessed by now - I think that the Cleveland Clinic kind of, and 
pardon the expression, sucks. So, I may be here through day 80 even if the 
doctors and my wife want me to leave. In fact, I like Seattle so much that maybe 
I will look at the classified ads this Sunday. Maybe I'll go over to see "Bill" 
in Bellevue on Monday to see if he needs another systems analyst or salesman. 
Maybe I will see if the Pike Place Fish Market needs another guy to catch "low 
flying fish!". Just kidding! Even though I do not relish the idea of being back 
in the care of the Cleveland Clinic, I really miss my home, my family, my fiends 
and my colleagues. I really hope that nothing prevents me from being home for 
Christmas. My birthday is on Christmas Eve and I always have so much fun that 
day with my family. I feel sorry for so many people that think that the Holidays 
are a pain. I just love the whole Christmas thing.

I really hope that we have a chance to get together before I go back to 
Cleveland. If our schedules conflict, we may be able to get together when I come 
back for the Day 80 testing week. I would love to hear about "the night that 
Chuck ran away". I think that, so far we have about five people from the 
BMT-Talk list that are interested in getting together. I really like a 
restaurant called "La Buzniks" here in downtown Seattle. They have good hearty 
Central European food. Perfect for a bunch of ravenously hungry people on 
Prednisone - they may have to kill an extra pig and a couple of chickens for us!

P.S. Chuck, this started out being simply a short letter for you. But I "went 
nuts" writing again and wrote another epic. I decided to "carbon copy" everyone 
because I am curious as to whether anyone else has become so "dependent" on 
their doctors or hospital while doing a BMT far from home.

With a handshake in thought,

Bob Czako

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


Last Updated on 07/17/03

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