Saturday, April 28, 2012

The Hybrid Man

A, B, O, AB. If you are someone like me, who wishes Grey's Anatomy to end soon and forever (if I thought any medical staff behaved like the staff of Seattle Grace, I'd never go near an hospital again), then you've also heard, when transfusions are involved, the order to "type and crossmatch" the blood. You know that mixing types can be dangerous. There's more, of course, but who cares? I can remember sitting with groups of friends who, for whatever reason, revealed their types. "Oh, you're type A? I'm AB positive!" "How interesting!" Pause. Change of subject.

Ignore these meaningless facts
The classification of blood into types omits everything truly important about blood, which, in my experience, has a little-known dimension that, for those of us who must live in it, is overwhelming and mysterious.


I refer specifically to the few of us who have had allogeneic transplants from matched but unrelated donors (a MUD) and have achieved 100% chimerism (meaning, our birth blood and its generating marrow have been completely replaced by that of the donor).

My donor should be about twenty-five or twenty-six by now and is a woman. I know this because they told me. That's all I am allowed to know for the first year–the sex and age of the donor.


My first inkling of the profundity of the MUD came when, after the allo, my hair grew back—not the salt-and-pepper gray that it had aged into, but its original chestnut brown with reddish highlights: my boyhood colors! I hadn't imagined such a possibility. How is that possible? Where is color description stored in the gene sequence?


Then my fingernails started to improve. They became thicker, smoother, and better formed. They stopped splitting and breaking. I have new, improved nails. I have no doubt whatsoever that my donor is female.


The callouses came off intact (photo not of me)
Next was something not pleasant: my donor and lifesaver didn't like my callouses at all, so she removed them. Off the palms of my hands came intact disks of callous, looking rather like the heels on a man's leather shoes when removed. It was an unnerving process. Fingertips. Feet. Everywhere. I was surprised by the volume of material removed. Callouses are there for a reason: to protect what they cover. Without them, my hands and feet hurt. I also lost the callouses on my fingertips: I used to be able to reach most intervals of a tenth on the piano (an octave and two notes), but some of them just barely, and now I can't reach some crucial ones. Which means, the piece I spent almost a year learning and improvising, Gershwin's Prelude 2 in C# minor, I can no longer play. Bummer. I want those few millimeters back! (Click on the MUSIC tab at the top of the blog and you will find my early recording of the Gershwin, before I spent so much time making it my own. I wish I had had time to rerecord it.)

On the last day of November, 2011, I had an infusion of my donor's lymphocytes (DLI): the allo had given me a year of partial remission and good quality of life but was failing. A series of DLIs was the only option that might give me a chance at long-term survival: however, the chance of getting the needed reaction from one DLI was less than 5%. In myeloma, it usually takes between four and five DLIs over an extended period to achieve whatever benefit the recipient is going to get, if any. I was told that I'd have the infusion one afternoon, take a nap, and then go home. Perhaps in a few weeks I might notice a change, I might not. Nothing untoward was expected.

Before proceeding, I should make clear just how rare a DLI infusion is for multiple myeloma. For example, the Scripps Blood and Marrow Center (BMT) at Scripps Hospital has been in operation for more than thirty years. They have performed perhaps tens of thousands of transplants of all kinds, including allogeneic transplants for myeloma. However, in all those years, there have been only three myeloma DLI patients at Scripps. The first one died almost immediately. The second survived, but the donor cells attacked him mercilessly for the rest of his life. I am the third. Three in about thirty-two years. The reasons are many: insurance (Medicare won't pay for it), risk, and "First, do no harm," just to name a few. DLIs are often performed for lymphoma, where they are far more predictable and much less dangerous. So DLI infusions are not rare in general, but are quite rare in myeloma (Holland and Britain do more of them). In America, they must be performed in a clinical trial in a research setting. I'm also quite sure that the cost of treating me for myeloma since 1998 is well over $1.3M.

The wholly unexpected reaction began the next day with a week in the ICU in complete misery and deliria. I think I was in hospital for a total of twenty-three days recovering, and, even then, left early because I wasn't going to spend the last holiday season I might have in hospital. The graft-versus-host disease (GVHD) hit me like a cruise missile: I was lucky to have survived. I shrank down to 145 lbs, a ghost of my former self, and I was too weak to walk. Yet, and this is the astounding part, the DLI eradicated the cancer: I got the perfect result, complete remission, on the first try. (In myeloma, if the patient doesn't achieve complete remission from the DLI, it will have done him little good.) According to the data I have, if I ever see myeloma again it will be years from now–and there is a chance I may actually be cured of it. For a myeloma patient, to get that chance, they must be prepared to die in the attempt. It's not an unlikely outcome. I saw it as a choice between a year of dying and the possibility of cure. If it is possible to purge the emotion out of the decision, it's a no brainer for someone with an otherwise good life. Once more, against long odds, I was given (and survived) the best response for which I could have wished. There are times I feel like the luckiest unlucky man in the world.

The GVHD was necessary to destroy the cancer but was almost more than I could bear. I was going to title this post, "Let's Talk Testicles," largely because mine had swollen into one huge ball that gave me the most pain of my fourteen year battle with myeloma. Because I had become incontinent, I had to be cleaned up often, and I suspect my screams could be heard for quite some distance. I was surprised by the nurses who cleaned me up. I thought that senior nurses would have seen or done everything imaginable or possible, and as a result would be incapable of being thrown off balance; but when it came to being gentle with my flaming-red beachball, they were clumsy. Finally, I had to insist that I would do the maneuvering myself during cleaning: I had feedback so I could be gentle. If you're not squeamish or underage–you've been warned!–click here for a picture of some other poor sod's uni-testicle. My skin looked far worse than his, including a blood red tint. Few thought I'd survive.


I did not anticipate having to endure yet another extended period of rehabilitation, but the DLI made me as weak or weaker than I've ever been. I hate rehab. This is my fifth rehab, and, in many ways, the most difficult and frustrating. Although I am getting stronger every week,  I still can't get up from a toilet seat without having a riser on it with handles. I am not a patient man. I can be impatient longer than just about anyone else, but that's really not the same thing at all.

But I digress. I've written and stored seven posts, which cover the aftermath of the DLI, but my mind took a big hit and I've been incapable of editing. So they're leaking out a bit into this one. When my mind is fully clear again, I'll see if any of the gibberish I wrote is salvageable.

My donor changed my blood type from A negative to O positive. That's the meaningless part. All remnants of my former blood/marrow system are gone and what I have now came from her. I have her blood, her marrow, her immune system, and the blood-bourne biochemical system that sends signals from the brain to the organs and back to synchronize and regulate their activity. My donor and I cohabit this body. Apparently, I've taken on a roommate: a delightful roommate for the most part, but also a mysterious stranger whom I am slowly and indirectly getting to know.

One thing I've noticed is that I react to drugs differently than before the allo and the DLI. For example, I had become resistant to Velcade before the allo, but responded to it between the allo and the DLI. Some drugs seem stronger, others weaker. However, one must somehow factor in that there are now fourteen drugs I take every day. Because I responded to Velcade after the allo and before the DLI, the Velcade response is valid. When I had had courses of Velcade before, they were not terribly difficult for me to endure. Not this last time. My donor didn't like them at all. I skipped the final infusion in the series.

Food tastes different, and I seem to want a better diet. I think my donor may prefer a more healthy diet that I do, yet I find myself eating more fruit, more vegetables, less bread, and less meat, and I want everything to be fresh and natural. This is not me. This is she. (At the moment I've lost my ability to taste salt, so it's difficult to enjoy anything but fresh fruit: everything else tastes like chalk. Supposing I needed another challenge to take my mind off of rehab, enduring for more than six weeks now, the children gave me the worst head and chest cold I've had in years, so my sense of smell isn't working right either. I can distinguish sweet from sour.)

I sleep better. I need few if any sleep aids. I go to bed, fall asleep, wake for a bit in the quiet middle of the night, then sleep until about 6:30, when the house awakens for school. I'm not restless: in the morning I feel rested. This is not me either. Before the DLI, my dreaming was impaired. Now I have the normal, refreshing kinds of REM dreams that are profoundly important to having a feeling of well-being during the day. The dreams I have now are much more vivid and powerful.

After the allo (summer, 2010) my skin became new, moist, supple, and young. After the DLI I'm a mess of thin skin, bruises, shiny jet black scabs that linger seemingly forever, and am distinctly red in color. By the way, I'm having my hair done again. She thinned it out last month (I thought I was going bald again), then turned it a very light brown, almost blonde. I have no doubt that my donor is female. None.

Sometimes something seems arbitrary when perhaps it is not. One hundred days post DLI is a milestone of sorts: some call what happens before that period "acute GVHD" and what follows becomes "chronic GVHD." That may seem arbitrary, but other authorities claim that different processes are at work after one hundred days. At ninety days post DLI I was clearly heading toward normal, except for needed rehab, but at one hundred and ten days my donor recapitulated the GVHD in the precise order in which its components appeared the first time (except, blessedly, for the extreme bloating and the uni-testicle). Right now the callouses I no longer have are being removed again, for example. My skin is paper thin, and as red as my Cherokee ancestors. Pulling off a bandage, like the dressing on a central line, often took my skin with it. What next? I do hope she'll settle in soon, satisfied with her handiwork.

I wish it were possible to take a timeout. My slowly-improving but powerful disability is depressing and enraging. For a time it included striking memory lapses: I had to be told some things several times for them to sink into my cerebellum and I was often confused. I can't say,  "I can't remember what I was told," because that assertion carries with it the implication that the knowledge is in my head but I simply can't retrieve it. Not so. I couldn't recall information because it never went into my head in the first place. I was driving Ivonne crazy. I became angrier and more depressed with every frustration, no matter how slight, and, I confess, took much of it out on her. I don't sense these lapses now, my mood is much better, and Ivonne is smiling again.

For the most part, I don't mind the changes. I am apprehensive because someone well known to me (namely, me) has become mysterious and not so predictable. To use the proper King James English, I am become an hybrid. Life is more surprising: truly, I have no idea what may happen next. Every cell in my body is now nourished, tended to, or washed by my donor's blood, not mine. Her immune system is fighting this head/chest cold, not mine. Mine is gone. It is transparently obvious to me that a MUD followed by a DLI is more than a change of designation (O instead of A-), but has also the most profound and subtle consequences in all of medicine.




P.S. I got a stunning and wonderful letter from my donor this week. I know much more about her now than I did, and much of it is surprising as well as delightful. Next week I will send her the form allowing her to contact me directly (which I believe she will do, but it's a choice on her part). I would tell you what I know already but I won't do that without her permission. I teared up often while reading it. But I will quote this from the letter: "Rest assured that as long as I live, I'll keep donating as much as you need." Because the system is slow (the letter is dated two months ago), it may be a while before she receives my contact information, so please be patient with me.

We both had the same kind of feelings, apparently. I compare them to those of an adopted baby who first learns that he or she had been adopted when in her teenage years: intensely curious but apprehensive; uncertain as to how to proceed and of the outcome of contact; afraid of rejection. If you can imagine what it would feel like to phone your biological mother for the first time, you'll understand what I think I and my donor both have been feeling.

11 comments:

  1. Lon,
    I so enjoy your updates, wish you the best. I would love to thank your donor as well, as you are such a inspiration to me. Such a strong person.

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  2. I am anxious to know who your donor is, too. Please confirm. I may already know.

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    Replies
    1. Email what you may already know, if you wish, but unless she tells me it's ok to reveal things about her, I can't confirm or deny. Gad, I'm sounding like a lawyer.

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  3. Hi Lonnie
    I am new to your blog having see the link through the Facebook Multiple Myeloma Support Group. Your post is awesome (not a word I use lightly) and you have been through so much, I hope that that you remain myeloma free and continue to recover from the DLI and regain your strength and appetite. Not only as your blood changed but your DNA as well but thats a whole different ballgame!

    Wendy

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  4. Much has changed since my time. That you are a survivor, is evidence that you are truly a force of nature. May you and Yvonne go on, knowing that you are encouraged all the way. Love,June

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  5. Lon,

    Both you and your donor are wonderful people.

    God bless both of you.
    אלוהים יברך שניכם.
    and Pax Vobiscum.

    Marty

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  6. I feel great joy in reading this post, feeling that this ride I have been accompanying you on is not only thrilling but immensely gratifying... continuing to intend you (and your donor)as well as Ivonne are having some wonderful years ahead, for the highest and best good of all concerned, so be it and so it is! Whooooo!

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  7. Oh wow. That one sentence you shared was so moving. How wonderful that she sees what a blessing it is to be able to save someone's life and that she wants you to know she would never let you down. You certainly are the luckiest, unlucky man I (sorta) know. :o)

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  8. Hats of both of you specially donor.

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  9. Great to discover your blog! I am 40 days post 3rd aliquot of DLI, my brother is the donor. Response so far is modest however I live in hope....
    Having experienced most of the known treatments for MM I can fully empathise with your experiences.
    All the best

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