Dave’s Great Adventure
Book 7, Chapter 1, Verse 1
“Desperate times call for desperate measures”--Hippocrates
Hey, my donor has a name! But more about that just a bit later okay?
First, my deep and sincere apologies to friends and family, as well as anyone else who may have been following my story. I have been seriously remiss in updating things. I last wrote that I was headed for a transplant and then, seemingly, disappeared. It would be easy to think that I had succumbed to transplant complications. The truth is more mundane. Plans have been made, postponed, made again and revised yet again. But…now we’re on!
When we decided on the transplant, last fall, we decided to put it off until after the holidays, not wanting the procedure to override the family activities of Thanksgiving and Christmas and not wanting my donor in far-away Sweden to have her holidays interrupted on my behalf. We planned to start the process immediately thereafter. But, shortly after setting things up in October, I fell ill, with a curious condition I’d never before heard of, called SIBO; small intestinal bacterial overgrowth.
Now, the small intestine is generally pretty much bacteria-free, unlike the large bowel which is full of lots of various bacteria, many of which are beneficial to your health. In fact, bacteria in your large bowel help with the manufacture of your vitamin B12, which you need to prevent certain kinds of anemia. In SIBO, the balance of beneficial bacteria is disturbed and causes the large bowel bacteria, normal though they may be, to start invading the small bowel. Here, they cause cramps, diarrhea, gas and malnutrition.
I had developed SIBO after a series of minor issues that required antibiotic treatments, and so I ended up with five courses of four different antibiotics over about a two month period. This led to persistent cramps and diarrhea. Of significant concern was that I may have a bacterial infection with Clostridium difficile, often called just “C. diff.” This can be a very serious problem, and even deadly, in folks like me who have compromised immunity. So I was treated with a medication called metronidazole (Flagyl) for a week. The problem went away, only to relapse about ten days later. So, I was treated again with a longer course of Flagyl, this time taking it three times daily for ten days. Again, it resolved, only to recur within a couple weeks. By now I’d had a couple of stool samples tested and neither had shown the presence of C diff, so my gastroenterologist decided that I likely had this SIBO thing. The thing is, the treatment for SIBO is…more antibiotics! And relapses are common. And it’s a diagnosis made mostly by educated guessing, as there’s no reliable test for the condition. Great! And, get this, if nothing else works, sometimes they can restore your bowel’s bacteria balance with a “poop transplant!” Yeah, they take someone else’s “healthy” poop and put into your colon. Is that not a bizarre concept? I wonder if they have Poop Banks like they have Blood Banks and Sperm Banks.
But I digress….
By now, we were into mid-December and the start of the transplant protocol and testing was about three weeks away. When getting a transplant, you MUST be optimally healthy to help you survive the procedure. So, Doc Khouri, my transplant doc, postponed the procedure until we could get the SIBO under control. He prescribed two more weeks of antibiotics, this time a combination of things. But it worked.
But then, over Christmas, I developed a cough which lingered for weeks. I commonly tell Kathy, “It’s always some damn thing!” as there always seems to be some issue to deal with when you have leukemia. Compromised immunity leads to many, many different issues. So, back on antibiotics.
We went back to Houston in early January to try to get the transplant back on track. I had an appointment to see Doctor Khouri at that visit to start things up again and set dates once again. However, after we’d gotten there, scheduling issues ended up cancelling that appointment after we’d seen only the leukemia docs and so we left without restarting the transplant. I was angry and disappointed at that delay.
We went back, yet again, two weeks later to try to get the transplant back on track. This visit went better and now the schedule has been set, the donor is agreeable and it’s time to get going. It’s a long process, which I’ll tell you about, but at present, my new cells are scheduled to flow into my veins on March 2nd.
I really wish I could tell you that I’m thrilled to have this set up and on the way. I wish I was happy, overjoyed and filled with anticipation. I’m not. If I had an acute leukemia, like AML or ALL, and had been told I had just months to live, I would be thrilled to have this opportunity, especially with such a great matching donor.
But I’m not thrilled. In fact, I am filled with anxiety about this process, almost terrified, because of all the potential complications, not the least of which is a miserable death. I’ve previously written about my other options. All of them, including doing nothing, include the risk of death. There is no right or wrong answer as to which option would be best. It’s a crap shoot no matter what I do. I’m simply playing the odds, no matter which way I go. My docs, Dr. Phil Thompson and Doc Keating, recommend the transplant now. So I’m going for the transplant while I’m still healthy enough and before I get so old that I will not be eligible for a transplant. Heck, I just turned 70 and that would put me beyond eligibility by many transplant protocols.
Right now, I am doing extremely well on the venetoclax. My FISH test (looking for abnormal chromosomes) is negative! The leukemia cell count in my last bone marrow biopsy in November had dropped from about 50% or so down to just over 0.1% of all the cells present. My blood tests are getting back to normal. I feel well. I don’t feel sick and don’t feel like I need a transplant! But, as I’ve mentioned before, it’s exactly when you’re doing great that you have the best chance of surviving and doing well with a transplant, maybe even being cured. So, unlike a patient with ALL who is looking an imminent death in the face, I don’t have that motivator. The result is that I see too much of the downside rather than the upside to all this.
The factors which make this risky for me are, first, my age. The older you are, the harder the procedure is. Plus, I have the 17p deletion chromosome type, which is a risk factor, and I have failed several other courses of treatments, another risk factor. But, in my favor, I have no significant co-morbidities (other diseases, like diabetes, heart disease, lung problems, strokes, etc.), I have very little remaining CLL for the transplant to have to clean up and I have a very good donor, close matches also enhancing the outcome of the procedure.
So, we’re moving to Houston. I’m required to be within 30 minutes of the hospital for about 100 days after the transplant. We have signed a contract on an apartment and will be moving in soon. It’s a “corporate” apartment, meaning it is furnished and stocked with linens, towels, kitchen ware, utensils, glassware and more. All we need bring along, basically, are our clothes and supplies.
The process will start on February 10th or so. I’ll be getting, in no particular order, a PET scan, bone marrow biopsy, an echocardiogram, EKG, lots of blood tests, pulmonary function tests, a chest X-ray, and more. Then, in between a lot of permits, financial counselling and such, I’ll get a large tube inserted into my chest, which will remain there for the duration of the transplant. It’s gonna drive me nuts, I know. Through this triple lumen catheter (having three channels within it), as it’s called, I will get medications, fluids, the stem cells, have blood drawn for studies and more.
This will all take about a week. Then, I’ll be getting my first dose of immunosuppressive medications, stuff called CD22, I believe, intended to keep my body from rejecting the new cells when they meet up with my more established and usually friendly cells. I’d hate for my new cells, having come all the way from Sweden, to feel rejected!
A week later I will be admitted to the transplant ward, where I will stay for about four weeks. The first week I’ll be getting more chemotherapy, so-called “conditioning.” That’s a very benign term. Sounds like putting something in your hair, or maybe it’s working out to get into shape, or some other pleasurable activity. But, in this case, “conditioning” is chemotherapy, designed basically to suppress one’s immune system even more to allow the new cells to enter your body without provoking an intense rejection. The conditioning lasts about a week.
And then the cells go in.
The transplant itself is anticlimactic. The cells simply flow into me from a small plastic bag, and it looks much like a pale blood transfusion. That’s the easy part. Then things get exciting. But, more about the aftermath later when I have something to report.
But what of the donor; what is she up to during all my pre-transplant activities? Well, she’s been busy too. Before she donates her precious stem cells, she has to be made to make a lot of them. This is done by stimulating her marrow with a drug commonly called Neupogen. It’s an injectable medication which is usually used in folks like me to drive up their white blood cell numbers after or during chemotherapy. But Neupogen also drives up stem cell numbers and pushes them into the peripheral circulation, into the blood stream, where they can be collected. The Neupogen can be uncomfortable and can cause mild bone aches. I’ve had it many times and can tell you, it makes you feels mildly ill, but usually nothing too bad. My donor will be getting the Neupogen for about a week or a little more and then her stem cells will be collected.
The collection process is not what many folks think or fear. Many have an image of a “bone marrow donation” as being a literal donation of bone marrow, it being extracted from the bones of the hips. This is pretty much ancient history now. It is still done rarely, but in the majority of cases, the stem cells are collected from the blood, where they have been sent by the Neupogen.
In the best case scenario, the donor is set up much as if donating blood, with a large IV in each arm. Blood is taken out of one arm, the stem cells are collected from the blood by an “apheresis” machine, and the rest of the blood is put back in the other arm. The process can take several hours. If the donor does not have great veins, they will sometimes have a large IV line inserted into the veins of the neck or chest for a short while, much like I will have, and the collection will be done by this route.
And my donor’s name? Well, of course she has one; I just don’t know her real name yet. For many, many months there will be a thick wall of anonymity between us. However, with my Swedish heritage, I'd like to imagine she has a classic Swedish name like Kjerstena Bengtsdottir or something, as they did in my Swedish grandparents’ days. But, more likely, in these days she has a name like Anna Larsen.
But rather than calling her “my donor” all the time, I wanted to give her a better name I could use for her. For a while I thought I should call her “Bo,” after the central character in the movie “10.” Bo Derek starred in that movie as the lovely woman who drove Dudley Moore to distraction with her “perfect ten” beauty. Remember, that my donor is a perfect 10 out of 10 match for me, too!
But the slightly raunchy overtones of that movie aren’t really appropriate for someone who is doing so much for me and doing so out of the goodness of her heart and character. She will derive nothing from this other than the satisfaction of helping out an anonymous stranger. So a different, better name would be appropriate. Donna, one of our neighbors and good friends, after reading my last message a couple of months ago, and noting my closing passage from the old hymn, “Amazing Grace,” suggested that her name, for now, should be Grace, or even, “Amazing Grace.” So, henceforth, I will call her Grace. Look at my last message’s closing and it will make a lot of sense.
I want to close this already (again) lengthy message with some “fun facts” about stem cell transplants. This is amazing stuff…really!
First, I will assume Grace’s blood type. My blood type now is A negative. Grace’s is A positive. After the transplant, my blood type will become A positive. Cool, huh?
Next, I will in fact, have her blood, not mine, in my veins. If I were to leave blood at a crime scene (!) and its DNA was examined, they will find Grace’s DNA, not mine. Even cooler, huh?
Next, after the transplant takes and her immune system has taken over mine, it will be a “brand new, never been used” immune system, which will not be prepared for any of the usual, childhood diseases and such. I will have to get all my immunizations yet again. Diphtheria, tetanus, mumps, measles, rubella, polio, and everything. Plus a flu shot and a pneumonia immunization. (I presume that I won’t have to repeat the shots I got before going to Vietnam, like plague, yellow fever, cholera, typhus and more.)
And, I hear that I may start taking an interest in pretty purses, curtains and patent shoes! And I’ll want my towels and wash cloths to match, for unknown reasons. I’ll grow little boobs and start getting PMS! Yeah, okay, that’s a joke, but I have heard of folks who, post-transplant, inexplicably took on some characteristics of their donor. I hope Grace likes barbeque and old cars and not lutefisk and Scandinavian modern furniture!
That’s it for now. There will be more to come if I can get easy access to a computer and a connection while in Houston, and if I’m feeling up to writing. A lot is about to happen.
Dave
“…these days, in which we can bear neither our diseases nor their remedies.”—Livy (Roman historian)
