The End of the Tunnel is upon Us October 22, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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It has taken some time but I have finally rationalized what has taken place since I came to the hospital in July. What I thought would be a short visit has turned out to be a three-month distraction from the activities I think are important about being alive. I understand that I contracted a pneumonia that created a sense of urgency in the BMT staff. The reaction to my condition—inability to assimilate oxygen—was to install breathing aid equipment in and around me. This installation left me unconscious. I‘m told I was unconscious for five days. This sequence of events not only took control of my situation out of my hands, it sapped my musculature-both large and small—rendering me unable to walk nor maintain my balance. It also, naturally, freaked Kathie out not knowing if I would recover or what shape I would be in.
I understand that, since I have emerged from the Intensive Care Unit, I have manifested enough symptoms to give each of the doctors and Nurse Practitioners his or her unique diagnosis of an ailment that needs attention. Fortunately the staff also has grown weary of my continuing being around. In the meantime Kathie has lobbied for the sole criterion for my exit to be my ability to climb and descend a 14-step flight of stairs. Our house separates the basement from the kitchen/tv room and, again, the kitchen/tv room from the bedrooms each with 14-step staircases. The consensus appears to be that I will be released and Kathie will actually take me back home once she is convinced I can navigate the staircases. Yesterday she upped the ante by adding that I also should be able to get my butt off the toilet by myself.
For my part, I’ve been meeting with Physical Therapy (PT) twice a day and Occupational Therapy (OP) once a day except for weekends. Yesterday, unaided, I climbed and descended 11 stairs. That is the only flight we have here that comes close to our stairs at home. I then walked a lap around the hallway without any assistance. That distance has been measured as 1/7 of a mile. I also was able to arise from the toilet on my own.
I believe there are now two remaining hurdles to my going home. Kathie is having one of her handymen install a second banister in each stairwell. These will ensure my success in stair climbing. The second condition of my release will be Kathie’s approval of my ability demonstrated here in the hospital. I am hoping to be home in a week.
It is Unbelievable How Dark things Can Get before the Dawn August 26, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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I just realized that I’ve spent some days in the hospital every month since December. This most recent trip was voluntary. I had a flare-up of diarrhea and thought it might be Graft versus Host Disease (GvHD). I spent only a few days and was going to go home on Friday when something funny happened: I contracted some kind of pneumonia. That is what I’d been told happened.
I was out cold for more than a day. I came around, more or less, in a room full of equipment and a guard whose job seemed to be to tell me I couldn’t get out of bed even though my diarrhea was still present. Her commands were enforce by the fact that my ankles were locked to the end of the bed attached to Velcro wraps that pulsated against my legs and an oxygen feed in my nose. Worst of all I was on a deep, soft pneumatic mattress that didn’t provide enough resistance to allow me to turn over or significantly change positions. It turns out my legs had lost the ability to support me.
I spent three or four days in two or three rooms in that situation until I began to take charge. We put the moveable toilet at the foot of the bed. We replaced the Intensive Care bed with a more traditional model and removed the Velcro booties. Now I can get out of bed and “pivot” (do you remember Tim Conway’s little old man walking across the floor to answer the door on the Carole Burnett show) to the pot. This allows me to wear the same diaper all night.
We had a colonoscopy which proved negative (“good” in doctor-speak) for all the conditions I’m diagnosed with. My still present diarrhea is considered manageable GvHD. We all agree that the bar to my leaving is my need to use a walker and a belief that I cannot make it up any of our three flights of fourteen stairs.
So the ball is in my court. The physical therapists at the hospital are spread too thin to give me the attention I need. At the same time there was an attempt today to get me into an intensive physical therapy center but they think I’m too well because I can walk 100 yards (with the walker). The transplant doctors are still negotiating. For my part, I’m focused on developing my own exercise program to be supplemented by daily tests and review by Physical Therapy.
A secondary but very real problem I have had for some months now is chronic fatigue. So this is a short note and I am going to bed. It would be nice to know that all these physical problems can be resovlcd by getting a good night’s sleep.
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To the dwindling number of followers of this blog, once again, I apologize. You are still very significant to me. I just haven’t seen any positive developments of significance in my fight with GvHD (“Graft versus Host Disease” for people who either were not paying attention when I defined the initials months ago or have such a full life that the definition was crowded out by more pertinent thoughts). Also I spend most of the day sleeping.
My situation has regressed over the past few weeks although I have purchased and installed a post, actually a tree, from which to hang some of our bird feeders and we did buy a new car and drive it to Rockford, Illinois and back. I am well off my feed.—so much so that I only rarely even plan menus. People who know me know I live for food. When I got out of the hospital my motivation was to get back to eating what I want to eat. Now I will skip a meal if Kathie doesn’t badger me into eating. Her motivation is that I now weigh significantly less than I did when she met me. In fact I almost weigh as little as I did when I quit the college football team after not having played in high school and acquiring a pack a day cigarette habit. This time, unlike my experience in college, I have lost significant muscle mass as well as fat. Although the transplant doctors might disagree, I attribute my weight loss to my regimen of 43 pills (actually only 11 different pills) administered in six installments every day. Not eating would be bad enough but I, on occasion—but too frequently to be ignored—have trouble keeping down the food and pills I do ingest. I expect to learn, this week, that this is a re-visitation of GvHD of the gut. It very likely will be treated by more pills.
This has not stopped my ambition to drive my cousin and his family up to Tennessee to see my mother and visit with my older daughter in three weeks or for Kathie and I to travel to DC to see “Wicked” and visit with our younger daughter and her husband—you remember they were married in Long Island City and I danced with the bride. I am better now than I was then although Kathie doesn’t think so because she’s seen me without clothes on. While making these trips seems to me something I can handle, I’m not yet up to getting together with the church choir for an impromptu sing along. Did I mention that I spend most of the day sleeping?
Good News and Not So Good News May 2, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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I apologize for not posting earlier. I have been waiting for the second—and third and fourth—shoe to drop finally I have despaired of the hope that all my problems will be resolved. However, some of them have been and so I owe a report.
I’m home! Actually I came home since the first week in March. I came home, not because that was necessarily the best for me but because we were traveling in circles with my diet at the hospital. I had too many decision makers and not enough expertise. I had, and have, three issues in my gut: GvHD, Norovirus and lack of enthusiasm on the part of the gut, itself. The transplant doctors chose to ignore the Norovirus and congratulate themselves on controlling the GvHD. My job was to encourage the gut to digest, rather than reject, the variety of foods I like without exciting the Norovirus or GvHD. I was working with a nutritionist but our pace was extremely slow and not particularly productive. My gut was rejecting benign food supplements like Assure. Finally one of the transplant doctors woke up to the cycle of progress followed by the violent reaction of my gut resulting our starting over at square 1. I just wanted to eat the food I am used to eating. In any case, we agreed that I would be better off at home and in control of what I was putting into my stomach instead of depending on the hospital food service to know my needs. I came home to a pump and a daily feeding of two liters of “TPN”—the stuff that Kathie called “urine”.
I also was sporting a pump to accommodate a 1 hour infusing of an antifungal medicine. This medicine is considered to have side effects that are less threatening than either Vfend or Noxafil: Pills I have had in the past. The pump, actually two pumps, were scheduled to actually work during the night when I was asleep. Intention is one thing. The TPN pump ran for 16 hours and the anti-fungal pump was turned on when I left the infusion center to be refilled two days later when I returned. As for sleep, my diarrhea had me out of bed every 45 minutes or hour all night long. I had to schlep these pumps into the bathroom every time.
After a few false starts, I have been able to improve my gut-acceptance of the same food that Kathie eats. I no longer have diarrhea at all although I can’t say my gut is normal yet. I am continuing to expand my diet, however. We have also negotiated the removal of both pumps. I’m back on Noxafil as an anti-fungal.
While I was in the hospital my legs, ankles and feet became very swollen. I kept saying, “Wait ‘til I get home to our stairs and we’ll see this swelling go down.” When the doctor finally released me he scheduled a half dozen sessions with a physical therapist. I didn’t see the need until I got home, stepped on the first stair and collapsed. I couldn’t support even my decreased weight on my bent leg much less lift myself up to the stair (no quadriceps muscle). That first time home, I crawled up the stairs on my hands and knees alarming Kathie no end. Now I can navigate the stairs but the quadriceps still need work as do a couple of other muscle groups. I have yet to put together a personal schedule in part because I am still being scheduled by doctors. I repeat it may be a mistake to let them into your life. The swelling has abated a little I’m looking forward to more improvement as I exercise more.
In the meantime the GvHD has returned to my skin. In doctors’ impractical way I was told to apply steroid salve to my skin three times a day. Did I mention that a personal schedule was problematic? I need Kathie to apply the salve to my back so my schedule needs to be in synch with hers three times a day.
I did have a PT scan and a bone marrow biopsy a week or so ago. Next week we will get the readout on these next week. Right now, the condition of my cancer has taken a back seat to getting rid of GvHD. Given the amount of chemotherapy I’ve been receiving, I will be surprised if we find any lymphoma.
I look forward to being more entertaining with my next post.
“Relax!” he said. “Things could be worse.” March 16, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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So far my attempts to clearly describe my circumstances have apparently clarified nothing. In the past week I have come to understand why. It turns out I am really, really sick. I mean people without hospital care die from the things that are wrong with me. The transplant doctors know what to do with GvHD but that hasn’t been my only ailment.
GvHD was joined by two viruses in attacking my digestive system and rendering it equivalent to that of a newborn. We believe that we have reduced the antagonists down to just GvHD but the doctors continue to check for the others. Norovirus, I’m told, can lay dormant for two weeks or possibly longer in an immune-suppressed body like mine. It turns out we can’t do anything to Norovirus anyway other than try to stay clean and be careful what we touch.
I remain “isolated” in my room (except that I can go walking in the hall as long I don’t touch anything) and visitors [I am allowed to have visitors] must wear a yellow smock while they are in my room and leave it here when they exit in their blue smock required for the rest of the hall. The only other difference I’ve noticed in being isolated is that the nurses can use working in my room as an excuse not to attend to other patients. That statement is a little unfair: The nurses here are conscientious to a fault.
In the meantime, I am amazed at the sensitivity my intestines feel to the slightest stimuli. For the past three days I have been drinking around 500 ml of a supplement called “Ensure”. This product is largely innocuous but it does contain traces of all of the food groups. My gut hasn’t seen food much more complex than white bread since I’ve been here and it is not reacting as positively as I had hoped. Though I am taking in no more than 500 ml a day I seem to be able to generate as much as 750 ml of output a day according to the hospital techs who eyeball this measurement.
This past week the transplant doctor, the nutritionist and I came to an agreement on a plan to spring me from this joint. We are now on day four of the plan. It is progressing but much more slowly than I expected it would. I was counting on being out of here this weekend but my weakened gut needs much more babying than I expected. Our plan was to progress to six small meals today introducing solid food once again to my system.
In fact, as I wrote this last sentence I did receive my first solid meal in a week and a half. It consists of two barely-toasted pieces of white bread and a bowl of chicken broth to dip them into; nothing to drink. I’ll get two more of these today. My program isn’t just limited in its menu it also needs to be introduced incredibly slowly. I’ve set the alarms on my cell phone for half-hour intervals to schedule consumption of each quarter of a piece of “toast”. Then I try to take the whole half hour to eat the quarter, chewing the gummy American goodness until there is very little remaining in my mouth. Actually, as I realize how quickly this “food” dries up, I’ve decided to speed up my regimen.
I am constrained by my family from using the critical word (“poo”) in describing what I will call “output”. Output, analyzed tomorrow morning, will determine the success of this stage. The magnitude of that success will determine what we do tomorrow. My objective is still “a meat and two sides”—albeit unbelievably bland—on Friday. That will open the door for me to go home and continue the process there.
I hear I’ve already missed the cherry blossoms and the Bradford pears. I don’t want to miss the dogwoods and the azaleas.
A Break in the Old Routine March 8, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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Stop me if you’ve heard this before: On Friday the transplant doctor said “We’re doing great. We’ll upgrade your menu and see where we are on Monday.” On Sunday he said, “You’re going back to ‘NPO’ (Nothing by mouth) immediately.” Something must have happened: Read on.
Actually, this happened on Sunday and Monday but the effect was the same. I’m still here with no firm date for departure. We didn’t retrograde me back to NPO either. Instead I’ve fired the food service. Now I pick and choose from what I eat from I’m served and supplement this with Ensure. TPN, the 3-liter food drip, has been eliminated. This is a good thing since we have also removed my whiz bang Neostar three-port catheter. This would be a good thing except that I am months away from terminating my treatment at the infusion center, not to mention I’m still in the hospital.
Let’s inventory my situation—again: I have Mantle Cell Lymphoma which may be in remission at the moment but is considered incurable; I entered into this therapy called mini-allo involving significantly replacing my immune system with that of a stranger from a strange land (the red baron); although I expected to be back in circulation by now, I find myself with chronic graft versus host disease (GvHD) of the skin and of the intestines—this is not as bad as GvHD can get and the transplant doctors are very proactive in addressing any complication they perceive; I came into the hospital with Norovirus—an untreatable intestinal ailment that is only a problem for people like me with a weak immune system; during colonoscopies looking for GvHD, the doctors have discovered a second intestinal virus called C-Diff (Clostridium Difficile) which is described by the Mayo Clinic as “most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications”; then, on Monday (yesterday) I was told that I show signs of VRE, Vancomycin-Resistant Enterococci which likes to hide in the plastic of whiz bang Neostar three-port catheters. No one is pretending that playing God is easy but these doctors are committed.
In the meantime I seem to be now past 36 hours of diarrhea. I am hoping that that is not indicative of a resurgence of Norovirus, for which there is no treatment. If I am, if fact, past that messy inconvenience then my recent history is that, by Friday, I will be told I should be able to go home on Monday.
Did I say that fighting GvHD is an iterative process? February 28, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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On Friday the transplant doctor said “We’re doing great. We’ll upgrade your menu and see where we are on Monday.” On Sunday he said, “You’re going back to ‘NPO’ (Nothing by mouth) immediately.” Something must have happened: Read on.
This experience is a continuing learning process for me. I have learned that the doctors have the framework of a process that is wide-ranging but imperfectly communicated to the rest of the hospital. My case, GvHD of the gut and skin—while not uncommon—exposes a weakness of the process: The lack of understanding by the hospital kitchen. A second problem in my case us the Norovirus combined with my seriously impaired immune system(s) and the lack of focus on the part if the Red Baron’s portion of the immune system. A third problem for the system is my insistence on being a player rather than jus t a dog in a kennel. I have no idea what role other patients play in a similar situation. For that matter I can’t comprehend how this process can influence the Red Baron’s priorities. I do know that this transplant team has an over 80% success rate in overcoming GvHD.
I have described the progression of this process from a gastronomical perspective. The nutritionist informs me that the procedure, from a dietary point of view, was downloaded from the Fred Hutcheson Cancer Center in Seattle recently. The GI issues on this floor are also a recent problem, not seen for the last couple of years. In other words, my problem is not all that common. The document from the Hutch, as it is called, really looks like a first draft from an implementation point of view. We talked for about a half an hour and came away with some action items, mostly for the nutritionist. She will call the Hutch to find out how they are implementing their plan. She will also ask the Food Service manager responsible for plating food to visit me. She also suggested that I talk to existing patients with complaints about the GI and GvHD diets. I suggested that, with official approval I might talk to the nurses or the nurse practitioners about informing patients that
Of course the clinical aspect of this process has to change each time the process recycles or we would just keep doing the same thing expecting different results. On Sunday, the transplant doctor explained that back during my third NPO period they had escalated my treatment to a steroid and a monoclonal antibody that targets T-cells. [A “monoclonal antibody” is a chemotherapy that is engineered to target specific characteristics of specific cells. As a result its side effects are limited to attacking cells with those characteristics that are not part of the problem being addressed (in this case my T-cells along with the Red Baron’s. Another side effect, unknown to me, is reaction the rest of the body has to the T-cells being under attack.] That escalation was curtailed with the discovery of Norovirus. Now we are going to continue that escalation particularly in light of the recurrence of GvHD of the skin which is, once again, living snow-like.
Oh yeah, I was going to tell you why I’m back on NPO. Most of last week I worked with the nutritionist to get the food service to provide a GI-1 diet without unacceptable items. I was proud of our accomplishments until I received Saturday’s breakfast which included a breakfast burrito with ample taco sauce. I think it was one of the regular standard breakfasts. The food service calls the patients and offers them choices for each meal: soup and sandwich vs. plate for lunch and dinner; something with grits vs. something else without grits for breakfast. The GI-1 diet is bland foods with low fat and certainly no breakfast burritos with sausage and taco sauce. I sent it back asking for a GI-1 plate I (I recall I had ordered scrambled eggs and bacon thinking my diet had been upgraded to GI-2 (bland foods no longer with low fat). I never received a breakfast. I learned later that my regimen had never been upgraded and adjusted my expectations but that didn’t prepare me for lunch.
For lunch the entire tray consisted of a single white plate on which was a piece of baked chicken breast, unadorned, but accompanied by a half-cup scoop of mashed potatoes. That was lunch.
I went into a rage. I was so animated that my nurse, a problem solver more than a problem definer, scurried out of the room and brought me back a bowl of carrots, a bowl of rice, a container of apple juice and a whole wheat roll. I threw the roll away and ate everything else even though the bowls of rice and carrots easily contained a cup each of their contents. Then in a fit of rebellion I dug the wrapped whole wheat roll out of the trash and ate it just to stretch the diet it the absence of additional fat.
Within an hour and within every subsequent hour until sometime early Sunday morning, I was on the john documenting the evacuation of everything Norovirus and/or GVHD could find in my gut. So, Sunday morning the nurse-practioner on duty had no choice but to restrict me back to NPO.
The transplant doctor is concerned about allowing GvHD getting out of hand. He has upgraded the clinical response while I am NPO. This will give rise for the need for more meds to treat the side effects of the steroids that are part of that upgrade. I’m already on blood pressure medicine, something I absolutely never need normally.
Now the doctor needs a stool sample that is impossible to produce while I am taking nothing in by mouth. I may never get out of the hospital but then I will never run out of things to write about.
Fighting GvHD Is in a Tunnel, Not a Cave. February 21, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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But first, the news: We have decided that the Norovirus is no longer a threat. We came to that decision based on the length of time since I first showed symptoms and on a lab test we have ordered that has not come back yet. It is much more convenient for these hematological oncologists (or are they oncological hematologists?) not to be distracted by an intestinal virus.
Back in 2004, when I had an autologus transplant (my own stem cells, cleaned up and put back into me) with this same group of doctors, once the transplant was declared successful, I was told I could order my lunch from the normal patient menu. I decided not to splurge and ordered a cheese pizza. I hadn’t been eating much at all during the transplant and I was hungry but I understood the need for restraint. What I was told later, after paying homage to the ceramic goddess in the bathroom was that the transplant work up had left me temporarily lactose intolerant. I’m getting similarly timed information with this transplant as well.
I believe I told you that the process was to spend an initial number of days without food or water (NPO) followed by a number of days on a purely liquid diet. The next stage, which I now understand is called GvHD-1, introduces real food—well, hospital food—for the first time. The hospital food service provides the patient with standard meals minus things they know we shouldn’t have. Food availability (like salt and pepper) increases as long as the volume of diarrhea does not exceed a certain amount in a 24-hour period. If the volume of diarrhea exceeds this amount, the patient is declared NPO again and the process starts all over again.
The length of time spent in each of these stages is determined by the doctor. When I argued about the inconvenience to the patient—not to mention the cost to Medicare in my case—I was told that determining the progression from phase to phase was based on the “Art of Medicine”. We’ll let that term stand—as best it can— on its own fatuousness. In any case I have spent my last three weeks here [Boy! It seems longer.] progressing from stage 1 to stage 3 and then bouncing from the introduction of food back to NPO.
Just in the last few days I have been given actual documentation of the process created by the Seattle Cancer Care Alliance. It turns out that the GVHD-1 stage of the progression is not a meal but some food to exercise the otherwise unoccupied gut. My confusions stemmed from the fact that the Hospital Food Service is geared to provide meals so I have been getting much more food than I need or should have for a GvHD-1 diet. For instance if I get a chicken sandwich on white bread, the kitchen knows not to put lettuce or tomato on it because I am neutropenic but, more than that, the GvHD-1 diet says I should initially only eat half a slice of the white bread with the crust cut off. In other words, I should proceed very slowly and not look for nutrition from the GVHD-1 diet.
Since the kitchen is not so fine-tuned that it could implement an incremental feeding program for patients in the GVHD-1 phase of this procedure and the nurses have responsibilities that don’t permit them to police the food intake of the few patients at this stage, the patient needs to take ownership of getting through this phase of the diet progression. It sure helps to know what we are trying to accomplish.
Now that I understand my role, I’m looking forward to getting to that phase again. The transplant doctor has suggested that that could happen as early as tomorrow even though I am currently NPO. I think he is waiting for the results from the test for Norovirus. In any case we might skip the liquid diet phase. (The documentation refers to this diet, in part, as “isosmotic”.) That would be a boon
Just When You Think It Couldn’t Get Worse February 14, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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This is just a short note about the presence of a complication and what we are doing about it.
It turns out that my reason for coming into the hospital was only partly generic, sugar-free ginger ale. I apparently also had the “Norovirus”. This is a virus that attacks the intestines and only lasts a couple of days in healthy people like Kathie. She had the same symptoms I did but only for a day or so. My problem lasted from Thursday, at home, until yesterday, actually. They diagnosed the problem on the virus on the third after having a specimen analyzed at some remote and expensive facility. A colonoscopy that week identified GvHD in the intestines as well.
The transplant doctors know how to treat GvHD. I can’t conceive of the biological reason they are successful but the statistics tell the story. Norovirus is something else entirely. I may have mentioned that, with the discovery of GvHD and my 24-hour diarrhea, the doctors pronounced my intestines temporarily moribund and put me on TPN (the Mountain Dew/urine I mentioned in the last post. Maybe “TPN” is a Latin acronym.
In the intervening time between identifying GvHD and results from the expensive laboratory showing Norovirus, we started on the regimen. The beginning, I also mentioned in my last post, is for me not to eat or drink anything for a 24 hour period to reduce the amount of diarrhea. Initially that lasted a couple of days. I progressed to a liquid diet, which I also described previously, and was moved to a room that could be called spacious. The transplant doctors decided they did not like the way I was reacting to the liquid diet and put me back on no food or water for three days. I had progressed from square 1 to square 2 and back again. I disagreed with the empirical evidence and actually started taking pictures of my diarrhea in a calibrated container to try to illustrate, if you will, my compliance with known requirements. I was informed that, empirical evidence may be one thing but “Medicine is an Art” [that pays a ton of money] and that the doctor’s opinion needs to rule the day.
Then the news of the Norovirus’ existence hit the floor. There are five or six rooms, including mine, that carry the warning sign. This was the tenth. The lab test showed positive on the third. The transplant doctors decided to let my diet progress to hospital food and my gut passed it right on out as far as I can tell. However, I did walk a mile each of the days I was on solid food. The one day I did not make the 12 laps around the hall was the day the doctors reinstated the TPN in addition to the solid food.
Yesterday, we went back to square one again. The theory is that the recent diarrhea was the work of the Norovirus and we would trick it into thinking I will never eat again. I was on board until I remembered the actual history which I am documenting in this post. Today, when I asked the transplant doctor how many days this fasting will last, he said “some days”. I asked what would signal that the virus was gone and he replied he would make the decision whether or not to move the GvHD process to square 2.
These doctors are following guidelines but they are not gastroenterologists. I’m on board to fight GvHD but at this point we are about to try something for a third time and expecting different results. There is a word for that behavior.
It’s hard to complain about finally getting an undisturbed night of sleep, however.
Curse You, Red Baron! February 10, 2011Posted by k2lyon in Mantle Cell Lymphoma, Mini Allogeneic Stem Cell Transplant, Stem Cell Transplant.
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Well, I spent the Super Bowl in a hospital bed. Worse than that, my diet was restricted to nothing by mouth—which doctors call “NPO” probably for the same reason they practice illegible signatures. In this case “nothing” includes water except to swallow pills. I had one ten-ounce bottle of water in the entire 24-hour day. Worse than that, my chemo-brain thought I could win a bet on the Steelers if I took 3 points. Now I own a dear friend $5.00 on top of everything else.
The situation has become totally different than I had ever expected. This has a lot more to do with my “eyes-on-the-prize” attitude than what I was told up front. Going in, I had a plan for closure at the end: We have the transplant; we knock down the Graft versus Host Disease (GvHD) and I am either left with continuing cancer or I am cured.
That ain’t the way it works. The kind of transplant this is—a non-ablative allogeneic stem cell transplant more popularly called a “mini-allo”—does not have same dangerous initial chemo build up that the autologus transplant that I had in 2004. The GvHD is supposed to be the therapeutic part of the mini-allo because it indicates that the grafted immune system is active. Active is one thing, my situation is now another. The goal with GvHD is to guide?, evolve?, morph? the grafted immune system to coexist with the remainder of the indigenous immune system. This effort is ideally successful within three months of the transplant. I am now ten months after transplant and still have GvHD.
That’s the beginning of the bad news. The good news is that GvHD is no longer attacking my skin. I was leaving clouds of my DNA everywhere I went but no more. Now, although I still have no body hair, I do have human rather than reptile skin. This is probably due to an escalation of the therapy. We started the therapy out relatively gently but even “gently” turns out to be pretty tough on the body. If you recall, we started our therapy with a steroid ointment that Kathie and I had trouble remembering to apply twice a day to most of my body. Here at the hospital a couple of nurses, being helpful lathered me up despite my protests that it should go on thinly. Since then the GvHD has been replaced by random capillaries bursting through the skin and leaving blood on the surrounding countryside.
The doctors I’m working with are specialists. The try to keep complete records of the various transplants they perform on the various cancers. In short they have experience with GvHD and the current ways of treating it. At one point the senior doctor ordered a colonoscopy to determine if it was the cause of the diarrhea I came into the hospital with. It really doesn’t matter whether it was the cause because he feels they did discover GvHD in the intestines. That causes the digestive system to shut down and I stop absorbing food. I’m trying to tell them I’m here for the weight loss as well as the cancer removal but humor is waning.
I am literally being kept alive by a three-liter bag of what the nurses call “Mountain Dew” and Kathie calls “urine”. Recently it has been accompanied by a much smaller bag of white goo which the nutritionists call “desert” and the nurses call “lipids”. I imagine that it is grandma’s lard cake frosting. These, of course, are just of the few wonders of science that are entering my veins through the three-port catherter in my chest.
Today I finally learned that treatment of GvHD of the gut is not so much trial and error as a necessary sequence of fighting (?), guiding(?), evolving(?), morphing(?) the new immune system to leave me alone and then seeing if we did anything by allowing me to eat—first with liquids and eventually with pork chops. If, at any point, we experience an uptick in diarrhea, we retreat to no food and increase the artillery and start over again. I’m thinking I’ll be here a while watching the food channel.
Today I learned that I could come out of this with cancer-free but with recurring GvHD or with both cancer and GvHD or with none of the above. I wish the options were mine rather than the Red Baron’s.