It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini […]
There is nothing more anticlimactic than the word ‘transplant’ prefixed by the words ‘bone marrow’ or ‘stem cell’. Having experienced two SCT’s before, I knew this time round was not going to start with good looking people wearing scrubs shouting “stat”, whilst sporting my blood all over their latex gloves. My loved ones were not […]
When I eventually wake up today, the first thought I am going to have, after the one we all have first thing in the morning about emptying our bladders, will be ’16 days’. I know I will have this thought because I have had the same sort of numerically decreasing thought every other morning for […]
There she stood, in the street, smiling from her head to her feetAll right now – Free Sometimes, 1 in 4 chances come up My sister and I went for tissue-type testing to see if our stem cells are compatible. These tests are looking at specific antibody g…
You may not see things my way; like my methods or my reasons; but you can’t tell me that I’m wrong Bluetonic – The Bluetones A bit of introspection, about my exposition Another week passes. I recovered from my fatigue, and I’m feeling pretty chipper. I…
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.
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.
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.
The thought popped into my head unbidden. After the allogeneic transplant in 2010, my chimerism tested 100% donor. In theory, that meant that none of my old blood and marrow remained in my body. In other blood cancers, such as lymphoma, donor lymphocytes (DLIs) are often given after the allogeneic transplant to achieve the goal of 100% chimerism. But I wasn’t 100% donor despite test results that claimed otherwise. The chimerism test simply isn’t reliable for myeloma. Numerous malignant plasma cells were not picked up by the test and didn’t count. But those remaining myeloma cells were clearly mine, not those of my donor. There were a great many of them as well.
Which is why we decided to do risky and exceedingly rare infusions of donor lymphocytes in the hope that they would destroy the remaining malignant plasma cells, which, in fact, they did, while almost destroying me as well. There is no remaining evidence of cancer, and today I probably am 100% donor (my fingernails probably have my original DNA, but for how much longer I can’t say).
So I sent an email to a couple of hematology fellows that read something like this, brevity being the soul of wit:
If I accidentally dropped a little blood at a murder scene, would my donor be arrested?
Ok, I forgot, I’m sorry! Big teaching hospitals support a stunning number of lawyers, and they and the n00b fellows, whom I like quite a bit, apparently missed or discounted the humor. There was much consternation and consultation, I am told. I can’t help it. I’m a writer. When I want maximum attention I know how to get it. Besides, when my sense of humor returns after a long absence, it’s a signal that things are going right. They’re still talking about my email days later.
So after a few days, when institutional sanity was more-or-less restored, I got the answer to my question. If my blood were to be tested, my donor would be revealed from the DNA. In fact, were my blood DNA tested today for sex, I would be found to be genetically a woman. Oh, my, whatever does that mean?
I don’t know. I’m not sure anyone does: I’ve been in terra incognita since the DLI. Every cell in my body is now being nourished by my new system (or, more accurately, my donor’s reconstituted system): my immune system is hers, my marrow is hers, the deep and pervasive chemical signaling system is hers, and she clots my wounds. Of course, the hormone balance is mine, so there are no visible or libidinal transformations taking place. But I have to wonder: with my brain cells bathed in her blood, am I changing in any detectable or meaningful way? Blood isn’t simply a letter designation on a bag of cells with no significance other than in transfusions. The working title of my book has been “My Inner Woman is a Lesbian” since the beginning, and its resonation now is a surprise.
Do you now or have you ever loved shopping? Dangly earrings? Sparkley sandals? Would you prefer a stout or a cosmopolitan? Do you crave hot wings or chocolate covered strawberries? Only you and your inner donor know the answers.
As a fellow MM patient and recipient of female stem cells for my allo, I’ll just say “Wait for those monthly mood swings!”
i want to have a bitch session with you:)
lol. I’m sorry Lonnie but I giggled when I read this. YOU COULD BE THE ULTIMATE CRIMINAL! :D hahahaha However I’m so happy you’re feeling better than I don’t really care if you’re turning female :)
….and just think of this bonus Lonni; you will now recall everyone’s birthday and anniversary! (and I heard your donor lady is a Christian and a conservative Republican!) Hahahahaha Best wishes!
sounds like its time for you to see the last mel gibson movie thats it ok for a jew ot see.. what women want shabat shalom
LOL Lonnie!!! You crack me up, havent read the blogs in a long long time. So very glad to hear you are doing better, and hey whats wrong with getting in touch with your softer side. Anyway, I dont really think you have to worry about pms or the other womanly problem of menopause. But if you do then thats all the better for us woman right?? A manly man understands women!!
I can’t find the quote just now, but someone asked me if leaving the toilet seat up was beginning to annoy me. Was I starting to prefer baths to showers? Do I hate my callouses? (My donor does–she removes mine as fast as I can develop them. I’d like to point out that callouses are protective, and doing without them is painful.)
I have noticed that my fingernails are growing in once again, this time gnarly. I am desperate for a manicure. Also, after the DLI my hair appeared to be falling out again. You will recall that after the allo, it returned in my my boyhood color, a chestnut brown with reddish highlights, instead of the standard-issue salt-and-pepper gray, so, what next? Just bald? Well, I didn’t go bald. Instead, I went thinner, went thicker, and now am a blonde. Extraordinary. What next? Does ear piercing hurt?
My next clinic appointment is on Friday 13th April (hope that is not a bad omen) and I will get the results of my blood tests which I had done yesterday. I have the serum light chain test to measure my … Continue reading →