Saturday, June 30, 2012

SAY HELLO TO EVE!

Eve
After the allogeneic transplant was mightily intensified by an infusion of donor lymphocytes (my donor gave a second time for the DLI!), my old blood and marrow were gone. What I have now grew from my donor's cells, giving a whole new meaning to the farmer's tomato-adoring phrase, "home growner." I can no longer say things such as "my donor is recoloring my hair" because my actual donor isn't changing my hair: she's a resident physician in a hospital. So why is my hair lightening for summer? It's not as if my hair fell out and came back a different color, which happens all the time with chemotherapy: the color, now a golden brown, evolved over weeks.

Again, nothing of my old blood and marrow system remains: blood type A- has become O+; the marrow itself, in nearly every bone in my body, is entirely from my donor, which also means that the blood and everything part of the blood and marrow system—biochemical signaling (e.g., cytokines), clotting, oxygenating, waste disposal, nourishment, and a multitude of other functions of which I know very little. My blood is no longer mine at all, except, I suppose, by right of possession, and most of us can remember how well asserting that principle of law worked out in The Maltese Falcon. (No, children, not the Millennium Falcon.)

Were I to be a trifle careless at a murder scene and spill a few drops of blood, my donor could be identified as a result of a DNA test. In the process, in passing, not of particular significance, I suppose, I also became female, or so saith the DNA. I've posted about that already.

This is a fascinating situation for a guy who has been wrangling with myeloma for fourteen years. I thought I had experienced all of it—the whole Borscht Belt of it—but nothing is easy. The problem lies in discourse: my donor is a real person somewhere. She isn't changing my hair color, or tearing up my fingernails, or demolishing my callouses. So, meet Eve, about whom I can say valid things without inadvertently making a reference to my donor, may she live a thousand years.

This whole subject would be a mere amusement if medical science knew it meant nothing to switch from male to female, A- to O+, live with a foreign marrow, and acquire a completely different DNA profile. However, some differences are significant and observable. I respond to at least one chemo drug to which I had grown resistant (Velcade). Eve is like a new patient who has never been exposed to anything other than the usual childhood diseases and an apple or two. However, because the cancer appears to be gone, I don't foresee having to use steroids in the future except when it is necessary to hold down the graft-versus-host-disease (GVHD), and certainly I'll need no chemotherapy. Eve doesn't have multiple myeloma. Over time, Eve is likely to drop many of her make-over projects as normal becomes redefined (e.g., when she stops hassling my liver).

But interesting thoughts return, probably of doubtful significance, but fascinating to me nevertheless. Although my donor had different parents, we are, in some sense, twins with identical DNA (I can't decide between fraternal or maternal twins). Because I test female, she has a twin-sister-like chimera in San Diego who shares no family resemblances: although, as things progress, perhaps in delicate light some changes in me might be noticed. 


My brain is associative more than it is eidetic. I make leap and find connections. But associating names with faces or even the titles of Shakespeare's plays with their plots is heroic for me. Thank heavens I never forget a voice! (Note that I hereby acknowledge having the most ill-suited form of memory possible for the medical profession.)

So the interesting question, crazy or not, is whether or not Eve is sentient. Is there an awareness somewhere, or is all of what is happening strictly biochemical or mechanical? We're in terra incognita again, because there are other possibilities than those two. If there is an awareness, surely it lives in the right hemisphere of the brain across the corpus callosum, the greatest bridge ever built by humankind. Eve and I don't share a thinking process of which I'm aware, so how would she make her awareness known to me, were she to desire to do so? Is awareness the same as identity? (Philosophers please comment.)

There are guidebooks of sorts. When I taught artificial intelligence, I learned from these books: Drawing on the Right Side of the Brain, as well as Zen and the Art of Motorcycle Maintenance. I read everything I could find on what happens to a person when the corpus callosum is severed.

So I told Eve what I wanted in several different ways. First, I simply asked her: she, after all, isn't separated from me by a damaged brain bridge. One of the lessons of a severed corpus collosum patient is that the left side has to use drawings or photographs or objects to talk to the right side. The right side recognizes items by touch, too. I didn't tell her what sign she might use to get my attention because I didn't know. Besides, I was feeling crazier by the second just trying to formulate the question properly.

After Eve

Before Eve
The result was flabbergasting. I keep journals. They are all about 275 pages long, each 6"x8", leather bound in Italy. Filling one up takes me about two years. My cursive handwriting is more to be deciphered than read. When excited, I ignore the lines on the page, neglect the dots and dashes, halt at spelling errors resulting in scratched-out words everywhere, and, in general, I scribble. However, a few days after trying to ask Eve if she were actually there somewhere, something changed. Suddenly, I was writing at many times my normal speed. The sentences were written much more neatly between the lines, and the result was easier to read. Spelling bothered me not at all—I didn't even think about it, and had to correct very few words. I could write almost as fast as I could think without giving any thought or energy about the mechanics. The cursive letters were quite nice, for me. This journal, at this rate, will take me about three months to fill rather than two years: Is there a more fitting way to send a writer a message than that? Of course there is always doubt, but to my eyes my journal was a clue-by-four. Knowing how to write is a right-brain attribute.

Yes, I suspect, some of you think there's no difference between my two examples. One thing I can't demo is writing speed without a video. One day I'll fix that deficiency, too.

There are other possibilities than Eve's awareness that might explain all this, I admit, but Eve's way was certain to get my attention. One day, I plead, tell me somehow you are there, Eve. A day or two later, I acquired a new ability. I doubt very much if the quality of my writing has improved one jot, but the penmanship, speed, and spelling certainly have (although, at times, I do revert to chicken scratching when reaching for a word I can't spell).

Other than this bit of strangeness (that I am somewhat embarrassed to write about), I am slowly getting stronger, clearer minded, and more productive, but I can backslide for quite some time when the CMV is active or the GVHD is tearing up my liver. Eve doesn't respond well to prednisone: she reacts rather rudely to it. However, when combined with tacrolimus, that's all we have to fight GVHD. Fight the GVHD too hard, it releases the often-deadly CMV virus. Fight it too little and it goes after my liver. We scientist types call this situation a "deadly embrace", where neither side can find a way to get away from the other without horrific consequences. So we lighten the steroid, the CMV appears, we add Valcyte and up the steroid by 5mg or so, then wait a week. If everything goes the right direction, my doctor lowers the steroid by 5 again and we wait. Eventually, we hope, Eve will tire of attacking my liver, skin, GI tract, and other parts of me and the result will be a return to a semi-normal life.

I ache for that return.

11 comments:

  1. Amazing!
    Tried to comment - the computer ate it - just suffice it to say "we" are watching others here at the Mayo Gift of Life Transplant house become their siblings - and about ready to "re-become ourself."

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  2. I hope Eve eases up on you soon. Your perspective is fascinating and has given me much to think about. Thank you
    Lovey

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  3. I hope Eve eases up on you soon. Your perspective is fascinating and has given me much to think about. Thank you
    Lovey

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  4. Well, until Eve leaves, you know that we could always use you.

    паранормальные исследований Отдела, Российская Секция (Paranormal Studies Division, Russian Section)

    Центрального разведывательного управления(ЦРУ=CIA)

    Соединенные Штаты Америки (USA)

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  5. Send me a sample consulting contract!

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    Replies
    1. Мы никогда не напишу вниз.
      (We never write anything down.)

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  6. Write to Eve and tell her you want her to work with you, that you are supporting her and you are going to be a team... ask her what she needs... perhaps more fruits and veggies? And I am continuing to intend that Eve integrates fully with the You you identify as ÿou¨for the highest and best good of all concerned, so be it and so it is!
    Plus... you have a fanatastic screenplay-movie developing here!

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    Replies
    1. Yes, and if his physical fetures begin to resemble the picture at the top, I'm going to try to date her.

      (male friend)

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  7. I love Sandys reply, there is a movie here in the wings! I love to read your posts and we are glad you are going sooooo well. I do remember not long ago at the post, that it was back and it looked quite bleak. I also remember you coming back from the gates of hell, geeze, and those pics :(((. So needless to say you are fantastic as compared to what might have been...:)))Lynne, Ralph and Lyndsey ( who is trying to be a violin playing
    doctor lol)

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  8. yes it is interesting and attractive. I like it

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  9. Your site is very good and helpful thank you.

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