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.
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
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
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 firstname.lastname@example.org 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
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
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 - email@example.com
Last Updated on 07/17/03
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