bone marrow transplant, the stairwell saga
and newly weds
and newly weds
One fall day a guy crashed his mountain bike up in the Wasatch Mountains outside of Park City, UT. A lower leg swelled up pretty bad from all the subsurface bleeding. He went to the doctor and was told to stay off the leg as much as possible and go to physical therapy to have all the dried blood worked out of the system. The following spring the same thing happened but the guy saw his regular doctor at the Park City clinic, who happened to be a friend, and told him that it was a pretty easy crash and the leg should not be lookin’ this bad. The doctor took a blood sample. Around 10:00 that night, the guy got a call from his doctor who apologized for calling so late but he knew his friend would likely be out the door at dawn. The doctor said, ‘It looks like you have leukemia.’ ‘What’s that mean?’ ‘Well, if you don’t do something about it, you’ll be dead within 3 years.’ The doctor knew he had to say something to get through to his friend or his friend would probably blow it off. The doctor had called down to the University of Utah medical center and set up an appointment for his friend the next morning to see a hematology/oncology specialist to confirm the diagnosis with a bone marrow biopsy. With a white blood count of 184, it was pretty much a given. And yep, it was.
Blood cancer (leukemia) starts with the nine/twenty-two translocation. One arm of the #9 chromosome breaks off along with an arm of the #22 chromosome, translocate, fuse on, and from that point on you’re screwed. The white blood cells are no longer able to fully develop before being released into the blood stream so they can’t do their job. The body tries to compensate by sending out more and more white cells, hence a count of nearly 200 as opposed to a normal count of 5. Not good. The white cells take up a lot of room so the other counts start going down. Like going from a hematocrit count of 47 down to 27 or lower. Does not do a whole lot for one’s energy level.
The doctors can keep you above ground for a couple of years with drugs but at some point one will need a bone marrow transplant. There’s no cure for blood cancer. Once the patient decides to go for it and a donor is found, the fun starts. There’s a week of intense total-body irradiation at mega doses (you have NO idea of the long-term effect of THAT procedure). It’s not the localized outpatient radiation treatments that are the norm. They take you 3 floors underground through a door thicker than a bank vault. You straddle a saddle and are strapped between four upright posts. Then everyone bolts, this huge door hydraulically closes and they watch you on video camera. This guy did this twice a day for a total of an hour and a half each day. Not the healthiest environment. Then there’s a week of mega chemo followed by a week trying to keep you alive while that stuff works its way out of the body. The treatment, hopefully, kills off all the leukemia cells. But then again, the body loses its ability to make blood. Not good. The patient receives liters and liters of blood over the next few months. This most assuredly brings on some concern.
All this also leads to losing one’s taste buds. Isn’t that cool? For a couple weeks food, and even water, is just plain unpalatable. Most patients just suck on ice cubes. When you feel like eating again, it’s not encouraging. Even applesauce tastes like cardboard. Juice is just as bad.
The lab takes out over a liter of bone marrow from the donor and by the time they work it down, the recipient gets only about 2 tablespoons. You’re layin’ there askin’, ‘You all sure that’s gonna be enough?’ Somehow these new cells know how to work their way into the bones and start reproducing. The new cells stick together when they touch one another and these small groups get larger and larger until they fill the bones. BUT there is something called GVHD (graft versus host disease). The incoming cells do not recognize the new body as host so they don’t start to graft and produce. Not good. Actually, there are a lot of ‘not good’s’ during this whole thing.
The transplant did not start off well for the doctor’s friend. Within 5 minutes they had shoved an oxygen hose up his nose and were packing him in ice. Not good. There followed the worst week of my life. Only time I ever contemplated doing myself in. I swear there was not one person on staff that would have bet a plug nickel on my chances of surviving for very long. I was in that room for a month and a half hooked up to IV bags through a Hickman line into my heart. The wall behind the bed was perforated with air blowing through it. My visitors had to stay downwind since I had no immune system whatsoever. They also had to wash their hands in the sink before coming past the curtain into my side of the room. Like where am?!
No access for me to running water for six weeks—no sink, no shower, no flushing toilet. And during this time, every muscle in my body atrophied. Talk about major setbacks.
One night one of the Hickman line hep-locks opened and there I was sleeping with blood pumping out and soaking the bed. The wetness woke me up. That happened twice. Another ‘not good.’ I don’t mind waking up if I have to pee but … Two other nights I woke up with the IV line wrapped around my neck.
I felt SO weak. It was even quite an effort just to use the spirometer whenever it was brought in. One had to blow into it periodically to keep one’s lungs clear. I was having WAY too much fun.
I had friends, acquaintances, co-workers, and others visit me. There was not a whole lot of stimulation in the room (other than keeping track of how many times the helicopter landed outside my window each day) so I really listened to what people were saying. Ever realize how many canned statements, banalities, trite little phrases, clichés, platitudes we have in American English? Responses such as, ‘Everything will work out.’ Reassuring words sound so hollow when they don’t jive with reality. A friend suggested to me that I should desist from referring to them as ‘parrot responses’ or ‘knee jerk statements.’ Even though that is exactly how I look at them. But then again, my social skills are not near the top of the heap. Start to listen and you will hear dozens of them covering all kinds of topics. I REALLY came to dislike such statements. If a person does not want to take the time to come up with something on his own, words to make it meaningful and personal, he/she just grabs a canned one and throws it out. Thank the gods most of my friends knew better. At times I myself, don’t know what to say to someone. So, depending on the situation, I might say something like, ‘I don’t know what to say, but I care.’ Then the person at least knows I’m thoughtful enough to stop and think before speaking. Some people appreciate little things like that. Especially if they are lying there as close to death as they’ve ever been. One friend came in, looked at me and said, ‘You look like sh*t. Are you going to be around much longer?’ I loved it. Definitely got me laughing. Something I really needed for my health. Another said, ‘Are you on your way out? Can I have one of your motorcycles?’ Possibly the best gift I got while in there was laughter. However, being able to finally leave the room after a month and a half, sitting up in a wheelchair rather than rolled out under a sheet was also pretty cool.
I was planning to receive jukai from my zen teacher within a couple months after being released. One of the tasks to do beforehand, was to copy the lineage from Buddha down to my teacher on a parchment chart. I wanted it to look nice but my hands constantly shook from all the meds I was on. It took me a week to copy the eighty-something names of the patriarchs since I had trouble controlling the shakes after only a couple of names. One of life’s little curves. Then there was the rakusu, a short monk’s robe that came into fashion when monks first started to be persecuted (they could easily hide it). A person receiving jukai has to hand stitch one. There was no way the medical staff was going to let me work with scissors, straight pins and a needle when I did not have any platelets. Luckily my teacher gave permission for Genshin, a monk at the Kanzeon Zen Center, to make mine for me. The ceremony is generally performed in a group when a number of people are ready to receive. Since being in groups was definitely not a good place for me to be at the time, the ceremony was held in the zendo with only Genpo Roshi, Genshin, and me. Pretty cool. I still have problems following the precepts but at least it’s a stellar goal to strive for.
During the last week, a nurse asked if I wanted to go outside. I don’t think any child, even on Christmas morning, could have been more excited than I was at hearing that offer. So—on with the mask, into the wheelchair and out of the room. Yee-ha! After a bit I asked if I could try walking. Probably wasn’t too smart since my platelet count was like zero (doctors won’t even operate on a patient unless their count is at least 50). Surprisingly I got a yes. I managed to walk maybe 40 yards and was totally maxed. Thank the gods for wheelchairs.
When my time was near for me to leave the hospital, there was a problem. They were not pleased with my living situation so they moved me over to a medical apartment on campus for an additional two and a half months. FOUR MONTHS I was away from home. There had to be a caregiver with me every night. I did not cope well with that. I also wore an alarm on my wrist in case I had a problem during the day and couldn’t get to the phone, I could activate the alarm. What IS all this—shouldn’t I be out skiin’ up in the Wasatch?
Then I found out about the nails. Remember the intensive treatment prior to the transplant? Well, I learned the body stops making new material for toe and fingernails. BUT, the nails continue to grow out, with no new material following along behind or in from the sides. Not good. The edge that you see beyond the end of the finger is called the ‘free edge’. Well, the back and sides of you nails develop free edges. Can you guess where this is going? Yep, at some point you are going to catch a free edge on something and the whole nail is going to rip off. Wakes you right up. The good thing is—it only happens twenty times. Never thought I’d be scared to take my socks off. This was all SO much fun.
Once the white cells started reproducing I was allowed to go into stores, as long as I wore a mask and went during off hours. With a white cell count of like ONE, I wasn’t about to argue with the restrictions. Talk about being isolated from society. You know when you walk into a store and employees ask if you need any help? If you are wearing a mask, forget it. It’s like you are invisible. One good thing about wearing the mask is when you are in a checkout line. You know how sometimes the person behind you crowds your space and is breathing down your neck? Not with the mask. People stand a good four feet behind you. It can be pretty humorous at times.
Nurses told me about BMT recipients who got through the procedure and then proceeded to bring about their own deaths. I think it was their way of saying, ‘Don’t be stupid.’ One guy went right back out into bars, smoking and not wearing his mask. He was dead in a couple weeks. Another went out golfing and got a real bad sunburn. This accelerated his GVHD to level 4 and he was dead in two weeks. I’ve had level 3 and man does that rot big time. Get to level 4 and you are probably going to die. Another survivor was just unfortunate. He went out pheasant hunting on his ATV, crashed and skinned his palms. He knew enough to clean them well but mold from the soil got into his system and he was dead within a month. Remember, one has no immune system during the months after a BMT.
This was how it was when I went through it. There have been numerous improvements to the procedure since then—stronger drugs, much shorter hospital stays and whatnot.
Another ‘not good’ was being weaned off the steroids and immuno-suppressants too quickly over the next nine months. GVHD flared up and they had to put me back on all the meds and start all over. I ended up on medical leave for two years. And yep, it was back to the mask. I get all tingly just reminiscing. (^_^)
One does not hear as much about bone marrow transplants as say, heart transplants. Not nearly as many adults make it through a BTM as through a heart transplant, which is pretty much a straightforward part replacement and one is out of the hospital within a week. They have a high success ratio with heart transplants. I was pretty healthy (well, except for the leukemia) when I went in for my BMT but my chances of getting through it and surviving the first year was only 29%. Not good. I talked with four heart transplant recipients over the years, sharing stories, and getting into some of the humor of it all. All four said they would rather go through another heart transplant rather than have a BMT. I agree. I sure would not want to go through one again. Some choose not to go through a BMT after they hear what it will be like. That’s a death sentence. I don’t know, I feel one should go for it. It sure isn’t pleasant but it sure is nice having a shot at staying above the ground.
Prior to making my decision to go ahead with the BMT (my doctor wanted me to wait), I talked to doctors, nurses, did extensive research on the web, and talked to three people who went through a BMT (one died within a year, another died in her second year, and I lost track of the third one. What’s even more sad, the two who died were both only in their 20’s and each had a small child.). After all this I thought I had a pretty good idea of what I was getting into. I came to find out I was clueless. No one mentioned the constant fear, among other things. Remember, one loses their immune system. You go out on a windy day, walk past a construction sight, smell the roses or sniff the cottage cheese to see if it is still good, and you breath in some mold spores, even common aspergillus, that you cannot even see—you’re dead within two or three weeks. A few years ago they did not have a way to deal with mold in the lungs. Now they do.
For months I had to make daily visits to the BMT clinic once they let me out of the BMT unit, getting my childhood immunization shots, more bone marrow biopsies, way too many chest x-rays, and whatnot. I walked in once and there were two other survivors sitting there. We were all bald, with a fat hump at the base of the neck and jowls from the steroids. I said, ‘We should rob a bank. If they put us in a lineup, no one could single us out since we all look the same.’ I thought it was funny but the two guys didn’t even smile. The nurses got a chuckle out of it, however. I tried my best to get the nurses laughing whenever I could. The stellar school where I was teaching let me take the laptop I was issued with me to the hospital so I was frequently checking out joke sites looking for stories I could tell the nurses.
After a couple weeks, I got off the elevator at the fourth floor and walked the two flights of stairs up to the fifth floor where the BMT clinic was. Thought I was gonna die. Man, it was tough gettin’ up those stairs. For the next two weeks of my daily visits to the clinic, I got off on the fourth floor and struggled up to the fifth. The third or fourth week I got off on the third floor. Good grief, it was like starting all over again. Every once in a while as I was struggling up the stairs, wearing my mask, huffing and puffing, pulling myself up with the hand rail, bent over like an old man with my eyelids drooping from exertion, someone on the hospital staff would pass me and say some words of encouragement. I thought that was pretty cool. I’m sure an occasional moan or whimper could be heard in that stairwell. I was hurtin’. Over the next couple months I kept working at getting off at lower floors. At each one it was almost like starting over. I was still required to come to the BMT clinic daily (I used to have a life). Occasionally, I just did not have the energy to do the stairwell but, if I remember right, not matter how bad I felt, I at least got off on the fourth floor (after I had a month of this under my belt). At the end I was able to walk up from the ground floor with less effort than that first day when I got off on the fourth floor and struggled up those first two flights of stairs to the fifth. Never thought I would be using a hospital stairwell to build up my strength.
I had to go down to the pulmonary lab a couple times to blow through the hoses. Even something as easy as that tired me out. One time they said they needed to draw some arterial blood. I’m thinkin’ no big thing. The blood lab was frequently drawing 4, 5, or 6 vials of my blood. This was when I learned there was a difference between drawing blood from a vein and drawing blood from an artery. A big difference. I’m talkin’ pain here—intense pain. Who would have thought? The tech told me this was going to hurt. That was my first clue that this would be different. He said a couple weeks ago someone started screaming in the lab and the staff all ran down the hall to the room where it was coming from. A lady was having some arterial blood drawn. This was not sounding good. He said, ‘Okay here we go. Try to stay relaxed.’ You can probably guess what I immediately did when he stuck the needle into a wrist artery. ‘Relax!’ How can it make so much difference between drawing blood out of an artery. Luckily I only had that done once. I learned later that day that no one had called for that test. All for nothing.
The whole thing was a bit more than I could cope with. I asked to be put on anti-depressants. Life mellowed out. The lows weren’t as bad but the highs were dampened down. I asked to be taken off the meds after three or four months. To me, going through days on an even-keel is not living—it’s merely existing.
Then for the next two years I tried to cope with medical complications and depression. By then I was WAY lazy and unmotivated. Every once in a while I’d get psyched to begin exercising. That generally lasted less than a week and was followed by a couple months or more of living like a slug. This went on for a few years. I was in my fifties and SO out of shape that I had the mindset ‘it was hopeless.’ Almost all of us have areas in our lives that we’d like to change. Sometimes we go for months or years stuck with wanting to change, but never seeming to get off the ground. It rots. A push is needed. For me it might have been self-disgust. It finally started to sink in that I was the only one responsible for my days. I really did not want to waste yet another year so I finally started to make some progress. The sands only run one way.
Well, enough. I think you get the idea. But I just pointed out some of the highlights, there’s plenty more, like when they went to dig out the Hickman line that had been in my chest for over a year and a half (I needed to hook myself up to nightly IV bags).
July humor—Newly Weds
After this guy married, he ordered his wife to keep the house clean, dishes washed, lawn mowed, laundry washed, and hot meals on the table for every meal. The first day he could not see if any of this was done. The second day he still could not see if this was being done. But on the third day, some of the swelling had gone down and he could see a little out of his left eye, and his arm was healed enough that he could fix himself a sandwich and load the dishwasher.
RVwest article ‘Following a Free Spirit’
FOR INDEX OF POSTINGS GO TO JULY 2006
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