Tuesday, February 23, 2010

I Have a Donor!

The Gift of Life

Somewhere in the world there is a donor who is a very good marrow match for me! Wouldn't you just know that I would have an exceedingly rare type requiring weeks of scouring the data to find any reasonable donors, let alone a good one.

Nevertheless, I've kept quiet about this because after you've found a donor there are certain additional things that have to be ascertained before unbuckling your belt and letting your belly out. For example, is the donor still alive? Is the donor still willing? Is the donor in Afghanistan and won't be near a collection center until November?

Saturday I learned that the donor had been contacted and had started, or agreed to start, preliminary testing. He/she/it is alive! They are still willing to donate! And they aren't in Afghanistan!

I'm guessing my rare type comes from a military raid on an Indian camp in Tennessee, more-or-less in 1838. Legend has it that an Indian survivor, a young boy, was adopted by a family named Ford and raised like one of their own, which is how he managed later on to graciously worm his way into my family tree. My mother once told me that two of my great uncles were distinctly reddish. Everyone else in my family tree is uninteresting all the way back to Noah.

Meanwhile, the CMV is dormant, my ultra-high level of light chains doesn't seem to be killing me, the insurance company hasn't yet found a way to turn down the allogeneic transplant, and the double kyphoplasty is healing nicely (although I expect there will be another before too long).

Yet I remain weak from the months of high-dose steroids, so weak I need handrails to climb stairs. My beloved piano hasn't had a workout in a very long time, which for me is heartbreaking. I have no appetite, probably from the drugs I'm taking for a persistent sinus infection. In another month I might consider work as a fashion model.
To sum up, it is the perfect plan: there is no margin for error. Every one of these steps has to be successfully reached, none are certain, but the chances of reaching them aren't stupidly small either.
I wrote these words for this overly-long post in December describing the narrow, slippery path I had to follow to have any chance of survival. Today I am a short walk away from the last challenge in the sequence, the transplant itself. Another miracle?

Tuesday, February 9, 2010

The End Game, Stage Two: Dangerous Decisions

After seventeen days in Scripps Green Hospital in La Jolla, I'm home but I don't know for how long. I've advanced to the next stage of the End Game, about which I began writing a long time ago.

I don't have enough strength or skill at the moment to adequately explain the second stage of the end game, but, in brief, there comes a time when treating one life-critical problem makes it more difficult to treat another. Unfortunately, both are deadly and neither can be ignored. Preference in treatment can usually be given, but because every patient is different, the correct course of action is often unclear. Every choice carries life-threatening risks.

In my case, my seventeen days in the hospital was supposed to be limited to treating a cytomegalovirus (CMV) explosion. Most people have CMV, but it is dormant. Driving it back into dormancy is required in order to have the allogeneic transplant that could save my life. Some of the drugs involved in driving down the CMV can in themselves cause damaging complications.

Rather inconveniently, however, the cancer decided it was a good time to explode. Perhaps it was feeling neglected, not having been treated since the fifteenth of January. The drug I take to drive down the cancer, the only working one I have left, unfortunately also reduces the ability of the other drugs and what remains of my immune system to fight the CMV. Absent an obviously safe course of action, today I felt compelled to take 40mg of dexamethasone to preempt an autopsy that might read, "death by light chain coagulation." That is, a description of a death from blood so thick with light chains that it just simply can't do what it needs to do to sustain life. My next nightmare is that the high level of light chains in my blood will, when we start the transplant, trigger Tumor Lysis Syndrome.

I'm not entirely sure I should be going a single day without being "vitaled," as they say in hospital speak: measured for blood pressure, heart rate, oxygen saturation, pulmonary function, etc. On the other hand, I am not ready to spend another hour in hospital without enjoying some period of normal life. This is another example, I must point out to you, of the second stage of the End Game, where doing something necessary degrades the abilility to do another necessary thing. Yet quality of life matters, even when life itself is at stake — a sometimes counter-intuitive fact which one day I hope to be skilled enough to adequately explain.

The most exasperating aspect of this stage of the End Game is that whatever action is taken, unless it leads to the best possible outcome (e.g., a significant extension of quality life, cure, etc.), it is impossible to know if a different choice would have been better: the other choices could have made made the end shorter or harder to endure. There are no do-overs. In my case, even if the cancer can be held at bay while putting the CMV into dormancy, subsequently turning attention to driving down the cancer runs the risk of reawakening the virus.

I can't write more tonight, although there is much to tell you. I am weak from Cushing's Syndrome, 40mg of steroids bombarding my brain (which, after an un-premedicated dose of Cytogam, isn't working well to begin with), Yvonne giving me twice-daily infusions of ganciclovir, and my cat insisting that I play with her. I'm afraid my editing skills are absent as well, so until my mind is clear enough to fix it, good luck understanding my jibberish.

Tuesday, February 2, 2010

And Then The Roof Fell In

If you look out my bedroom window a few hundred yards to the west, you will see a big chunk of the Blue Pacific over the heads of the dazzled Torrey Pines golfers. At Scripps Green Hospital, I'd rather have a room overlooking the main parking lot because the Internet signal is so much better on the land side of the hospital than on the water side, but, then, I never claimed to have a balanced set of priorities.

I've been trapped in these lovely surroundings since last Friday by bedeviling low-level fevers whose cause originally was thought to be an activated cytomegalovirus (CMV), which indeed, I seem to have. However, after much testing, the fevers turned out to be sneak attacks from a sneaky sinus infection (locatable only by CT scan). Apparently, I've had the sinus infection for quite some time. On the plus side, Ivonne and I may soon be able go home after we learn to infuse me with the two or three I will still need (Ivonne, by the way, has a roll-away bed in a corner of room N-358). But I might be in hospital longer now that I've earned accolades from the staff for vigorously walking around the facility (and re-breaking L2 in the process, the very vertebra that was supposedly repaired by kyphoplasty more than a year ago).

To fight the CMV, I was given an infusion of Cytogam. That infusion swiftly gave me an episode of artrial fibrillation (A-fib), with my pulse at 174 but with normal pressure. Now I wear a radio device that continuously reports my vital statistics. While no one thinks I'll go into A-fib again, there's another opportunity to see if no one is right coming up soon (there's another Cytogam infusion in forty minutes or so).

On the plus side, the food is better here today than it was when I had my aSCT here in September of 2005.

But enough about me. I must mention my aged brother (he's 67) who has diabetes, congestive heart failure, high blood pressure, stage 4 lung cancer (NSLC) and a leg shortened by a motorcycle accident in Italy many years go. Last week he broke his leg again. The femur this time. Joe is one of the rare individuals whose NSLC has not progressed in something like three years.  Need I mention that this injury is tragic?

There's more, but it will have to wait. My new pain killer, MS Contin, is taking control....