tag:blogger.com,1999:blog-80593951796505626552024-03-13T08:55:17.519-07:00Medical MusingsMy Life with MyelomaLon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.comBlogger115125tag:blogger.com,1999:blog-8059395179650562655.post-39902473319061269532012-07-08T13:24:00.000-07:002012-07-08T21:32:56.648-07:00The Freelite© Chain Assay<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3G7TFzDeNgaPaS7WJM8adxnog2AbphcdYqY4sUExQ4lS6ghUtlQAMed1tKGi9OM1AybFkPJlWzEZP0etYoKMhpJ8S9WWO7lD04_R61giiCdWRZbc1CuXcA5w27eZ_XK98KdnKw8Y4cp4/s1600/lightchains.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3G7TFzDeNgaPaS7WJM8adxnog2AbphcdYqY4sUExQ4lS6ghUtlQAMed1tKGi9OM1AybFkPJlWzEZP0etYoKMhpJ8S9WWO7lD04_R61giiCdWRZbc1CuXcA5w27eZ_XK98KdnKw8Y4cp4/s1600/lightchains.jpg" /></a></div>
Myeloma is not always easy to assess. In many cases, the usual types of tests don't reveal anything useful. For some of us, such as for me, the only laboratory test of value is the <a href="http://www.bindingsite.com/freelite" target="_blank">Freelite©</a>, which measures the numbers of <a href="http://en.wikipedia.org/wiki/Immunoglobulin_light_chain" target="_blank">light chains</a> in serum and calculates the ratio between the two.<br />
<br />
I have no problem with the test except that patients often think the ratio has meaning.<br />
<br />
Back in 1998, when I was diagnosed with multiple myeloma, there was an older test for light chains, but it wasn't usefully accurate. I took it regularly and charted its results, but doing so was more for curiosity than for practical application.<br />
<br />
Every perfect plasma cell has attached to it two light chains. I find the pictures don't help a lot, but I'll add one (above). The light chains are called Bence-Jones proteins after being discovered many years ago by a doctor of that name.<br />
<br />
Usually, a myeloma patient will find in his blood both types of light chains, with one abnormally high: kappa or lambda (don't get frightened by the mathematical-sounding names: they happen to be the initials of the people who discovered them, K and L). They tend to break off the plasma cell and circulate. The number of them in the blood is a rough measure of the infiltration of the bone marrow by myeloma. I think of the measurement as a poor-person's bone marrow biopsy: it's as close as we get to measuring something called "tumor burden" in other cancers. Some of us, like me, have no other way of measuring what the cancer is doing. Others, the true non-secreters, don't even have light chains and must rely on biopsies.<br />
<br />
The problem with measuring light chains accurately is that they are stunningly small. Their weight is given in Daltons, which, if you didn't know, is defined as one twelfth of the rest mass of an unbound neutral atom of carbon-12 in its nuclear and electronic ground state, and has a value of 1.660538921(73)×10−27 kg. Light chains of type lambda are heavier (bigger) than of type kappa, which is why people whose type is lambda may have more kidney problems than kappas. The lambdas are more likely to clog the kidneys (drink lots of water).<br />
<br />
A light chain is a VERY small thing.<br />
<br />
Then two or three Australian scientists got an idea. After looking at the inaccuracy data of the old test, they thought they discovered two things. First, if the measurements of kappa and lambda were not correct, at least they were incorrect in the same way. That is, both measurements were either too high or too low, never one high and the other low. So they reasoned that if they calculated the ratio between the two types, the result would be accurate and wipe out the error. They even claimed the ratio to be predictive of future relapse. That's how we got the ratio: to compensate for defects in the original test.<br />
<br />
By the time I got one of the authors on the phone, California to Australia, they had recanted on the ratio and its predictive value entirely. Ratio? What ratio? What it actually did was magnify the difference between kappa and lambda so that an observer wouldn't miss the drop in the non-dominant type, but that turned out to be relatively meaningless therapeutically. If you are type kappa, for example, it doesn't matter if the lambda drops and the ratio increases: treatment will be the same.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo3-_28kVmTrdv4j7MtOFWYLZKi9ys1aeafl74m9qZoO7tyP74oXBw7695erqKiHPpUJ2OAY6Swdn6g2IrToqOzOym-o7ro2p87mgWFmMIrsd1lfsVN_1PkIwoRi6OEcgBdB549eIzT98/s1600/ARUP.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="144" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo3-_28kVmTrdv4j7MtOFWYLZKi9ys1aeafl74m9qZoO7tyP74oXBw7695erqKiHPpUJ2OAY6Swdn6g2IrToqOzOym-o7ro2p87mgWFmMIrsd1lfsVN_1PkIwoRi6OEcgBdB549eIzT98/s200/ARUP.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">ARUP</td></tr>
</tbody></table>
Then we got the Freelite© test, which can accurately measure the light chains. In my case, the samples have to be sent to ARUP labs in Utah for analysis, so getting the results takes days, but at least the results are accurate, or, at least, have always made sense for me.<br />
<br />
If you go to the <a href="http://www.bindingsite.com/freelite" target="_blank">Binding Site</a>, who owns the test, here's what you'll find about the ratio:<br />
<br />
<blockquote class="tr_bq">
"The serum free light chain ratio is a strong indicator of monoclonality and is valuable for distinguishing monoclonal from polyclonal diseases. "</blockquote>
Actually, the kappa and lambda measurements tell us that already.<br />
<br />
Now to be fair, there are a few references to the ratio on the Binding Site, but if one looks further, one can find this from someone worth listening to, Sundar Jagannath:<br />
<br />
<blockquote class="tr_bq">
"One third of patients with monoclonal gammopathy of undetermined significance have an abnormal free light chain ratio, and these patients harbor a greater risk of progression to plasma cell dyscrasia. For monitoring response to therapy, the international uniform response criteria define a normal free light chain ratio as an essential element of the "stringent complete response" category."</blockquote>
<br />
So, if you are MGUS, and the ratio moves but the k/l levels are still normal, perhaps it is the beginning of progression. I think. In any case, CR means a normal ratio in addition to normal levels of kappa and lambda, which, of course, a result we would expect.<br />
<br />
Which, obviously, is more than I know about this subject.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com6tag:blogger.com,1999:blog-8059395179650562655.post-82338181078668569952012-06-30T15:18:00.001-07:002012-07-02T12:04:34.173-07:00SAY HELLO TO EVE!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJbPod6cN1lVmkQUr6YclSPrVq1V_khes7ByFdab2kDPNcCFbJ9-MdVKZDCBrrAwlZF36v5mKVWfg4hncrFJUw_JO8cMnn73yYaWMNsIFoDOnaAND9nYM-1ITpY14O9hhYgnYw5JKw_E8/s1600/EVE.jpg" imageanchor="1" style="background-color: white; clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJbPod6cN1lVmkQUr6YclSPrVq1V_khes7ByFdab2kDPNcCFbJ9-MdVKZDCBrrAwlZF36v5mKVWfg4hncrFJUw_JO8cMnn73yYaWMNsIFoDOnaAND9nYM-1ITpY14O9hhYgnYw5JKw_E8/s320/EVE.jpg" width="193" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="background-color: white;">Eve</span></td></tr>
</tbody></table>
<div style="text-align: left;">
After the <a href="http://en.wikipedia.org/wiki/Allotransplantation" target="_blank">allogeneic transplant</a> was mightily intensified by an infusion of donor lymphocytes (my donor gave a <i>second</i> time for the <a href="http://en.wikipedia.org/wiki/Donor_lymphocyte_infusion" target="_blank">DLI</a>!), 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.<br />
<br /></div>
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 <b><a href="http://www.imdb.com/title/tt0033870/combined" rel="nofollow" style="font-style: italic;" target="_blank">The Maltese Falcon</a><i>.</i> (No, children, not the <i><a href="http://en.wikipedia.org/wiki/Millennium_Falcon" rel="nofollow" target="_blank">Millennium Falcon</a>.</i>)</b><br />
<br />
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.<br />
<br />
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.<br />
<span class="Apple-style-span" style="background-color: white;"> <br />
<span class="Apple-style-span" style="background-color: white;">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 (<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/" rel="nofollow" target="_blank">GVHD</a>), 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).</span><br />
<br />
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 <a href="http://en.wikipedia.org/wiki/Chimera_(genetics)" target="_blank">chimera</a> in San Diego who shares no family resemblances: although, as things progress, perhaps in delicate light some changes in me might be noticed. </span><br />
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<span class="Apple-style-span" style="background-color: white;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv7k0R04RMXuAJ0FVLFx2Zz4b1w_4hTwj3jvzgVBzbukJ4XCRGGBgwhwulxkOtLgMZpWsK03biQkKmv2k7VnwVR5U4131DkihK0ecCUMBiz3mxpfrAmq5vdNqfbIDjYS11vXKOOMf8-Uo/s1600/ibrain4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv7k0R04RMXuAJ0FVLFx2Zz4b1w_4hTwj3jvzgVBzbukJ4XCRGGBgwhwulxkOtLgMZpWsK03biQkKmv2k7VnwVR5U4131DkihK0ecCUMBiz3mxpfrAmq5vdNqfbIDjYS11vXKOOMf8-Uo/s320/ibrain4.jpg" width="320" /></a></span></div>
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.)<br />
<br />
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 <i>terra incognita</i> 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 <a href="http://en.wikipedia.org/wiki/Corpus_callosum" rel="nofollow" target="_blank">corpus callosum</a>, 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.)<br />
<br />
There are guidebooks of sorts. When I taught artificial intelligence, I learned from these books: <a href="http://www.amazon.com/The-Drawing-Right-Side-Brain/dp/0874774241" target="_blank">Drawing on the Right Side of the Brain</a>, as well as <a href="http://www.amazon.com/Zen-Art-Motorcycle-Maintenance-Inquiry/dp/0061673730/ref=sr_1_1?s=books&ie=UTF8&qid=1340745671&sr=1-1&keywords=zen+and+the+art+of+motorcycle+maintenance" target="_blank">Zen and the Art of Motorcycle Maintenance</a>. I read everything I could find on what happens to a person when the corpus callosum is severed.<br />
<br />
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.<br />
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<tr><td style="text-align: center;"><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNmYvW6oqoxfzsYacPdo6L7i98R2naol3NqJqKThFVSboKliDMw9woLkkQujZmLd8NQgcfd5ucrS2FT5HcFNe-2ccefCK8cFkxABhW4wsWx4O-jsH-FVuOFTKh3z0_kWjK0rT7eFpBG_4/s1600/cusivebetter.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNmYvW6oqoxfzsYacPdo6L7i98R2naol3NqJqKThFVSboKliDMw9woLkkQujZmLd8NQgcfd5ucrS2FT5HcFNe-2ccefCK8cFkxABhW4wsWx4O-jsH-FVuOFTKh3z0_kWjK0rT7eFpBG_4/s200/cusivebetter.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After Eve</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5lwc9BZJLGlqmo5YedJxy8qWF1bAt8pB09tJc290wYRAF8n-co3AAZGHhVF3EGU0gF9zLb19u2fhdzGeNfmCI9ICBH4MdnCF-eE90nd0wlkQ0bU0ws7qV-w9w8-iptC-uLSLWqdo4jrc/s1600/badcursive.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5lwc9BZJLGlqmo5YedJxy8qWF1bAt8pB09tJc290wYRAF8n-co3AAZGHhVF3EGU0gF9zLb19u2fhdzGeNfmCI9ICBH4MdnCF-eE90nd0wlkQ0bU0ws7qV-w9w8-iptC-uLSLWqdo4jrc/s200/badcursive.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before Eve</td></tr>
</tbody></table>
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.<br />
<br />
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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqziq7nhKUtU0N1KzQr_Mn-uDzJIsZT5B_ljk4aS_PX2tRxPiJfeddapXxin548nYXw72pz_FMCe6tqI9vZzKjtGpkjYH5ItOSkmF1Mo6jtekoA2P6KL0AFHYaemHY31eRwBhdklC0YW4/s1600/chicken-scratch-ron-york.jpg" imageanchor="1"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqziq7nhKUtU0N1KzQr_Mn-uDzJIsZT5B_ljk4aS_PX2tRxPiJfeddapXxin548nYXw72pz_FMCe6tqI9vZzKjtGpkjYH5ItOSkmF1Mo6jtekoA2P6KL0AFHYaemHY31eRwBhdklC0YW4/s320/chicken-scratch-ron-york.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
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).</div>
<br />
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.<br />
<br />
I ache for that return.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com11tag:blogger.com,1999:blog-8059395179650562655.post-32021827297402065062012-05-16T11:20:00.000-07:002012-05-16T11:20:11.198-07:00Do These Shoes Make Me Look Fat?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbDN7eShAzCS9u077cEQfGrH2bFhEWBVA6zmg6RfMwMCydY2GlNBDWKMYz3ub_61ePvsQhUz0iRGzjPpng2wX3nveGregZFyu1Hq3PrdQOsTBZepHU5_e3XPPH6a-Orw2xqYgxImroyFM/s1600/tiresias.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbDN7eShAzCS9u077cEQfGrH2bFhEWBVA6zmg6RfMwMCydY2GlNBDWKMYz3ub_61ePvsQhUz0iRGzjPpng2wX3nveGregZFyu1Hq3PrdQOsTBZepHU5_e3XPPH6a-Orw2xqYgxImroyFM/s320/tiresias.jpg" width="228" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tiresias</td></tr>
</tbody></table>
The thought popped into my head unbidden. After the allogeneic transplant in 2010, my <a href="http://www.medterms.com/script/main/art.asp?articlekey=8905" target="_blank">chimerism</a> 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 (<a href="http://en.wikipedia.org/wiki/Donor_lymphocyte_infusion" target="_blank">DLIs</a>) 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.<br />
<br />
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).<br />
<br />
So I sent an email to a couple of hematology fellows that read something like this, brevity being the soul of wit:<br />
<blockquote class="tr_bq">
<i>If I accidentally dropped a little blood at a murder scene, would my donor be arrested?</i></blockquote>
<br />
<a name='more'></a>Ok, I forgot, I'm sorry! Big teaching hospitals support a stunning number of lawyers, and they and the <a href="http://en.wikipedia.org/wiki/Newbie" rel="nofollow" target="_blank">n00b</a> 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 <i>still</i> talking about my email days later.<br />
<br />
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 <i>that</i> mean?<br />
<br />
I don't know. I'm not sure anyone does: I've been in <i>terra incognita</i> 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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOoIDLUA-J_-1sJru5vGlKuNdj02YqAcAdP3t7wItvd0PF49nxqAIeu95nw7s5k9125rBLJuVgDCO8yhf2Z-C1bnLnazcUAnk0wFqcaH7vf7qhgWFIEaKAgvdtyPi9jcQmvZTXEVVMWiw/s1600/a_young_woman_painting_her_nails_lv0041013l.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="278" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOoIDLUA-J_-1sJru5vGlKuNdj02YqAcAdP3t7wItvd0PF49nxqAIeu95nw7s5k9125rBLJuVgDCO8yhf2Z-C1bnLnazcUAnk0wFqcaH7vf7qhgWFIEaKAgvdtyPi9jcQmvZTXEVVMWiw/s400/a_young_woman_painting_her_nails_lv0041013l.jpg" width="400" /></a></div>
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So I asked my <a href="http://www.facebook.com/Lonnie.Nesseler" target="_blank">Facebook</a> friends about this unanticipated turn of events, as, indeed, I ask you, my dedicated readers, for advice on the signs of transformation for which to look and how I should respond to them should they appear. After all, if Facebook friends can't give you an answer to a complicated question in less than a minute, there is no answer.</div>
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From Cindhi:</div>
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">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.</span></blockquote>
From Jack:<br />
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">As a fellow MM patient and recipient of female stem cells for my allo, I'll just say "Wait for those monthly mood swings!" <g></g></span></blockquote>
From Lynn:<br />
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">i want to have a bitch session with you:)</span></blockquote>
From Susanne:<br />
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">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 :)</span></blockquote>
From Mike:<br />
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">....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!</span> </blockquote>
From Allyson:<br />
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">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</span> </blockquote>
From Robbie:<br />
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<span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">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!!</span> </blockquote>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7UIpgQe1nHtEhGrpgOmsttXYhEsvL80A56voUFaHk5EB7ktPez_YlkgSadqBo8N2I8g7cJq2IwoRv5bkZVqmFvorSN6iwr9aP6BjVaR3pJHBdap9XIC-_Evqe7b61sSEtQrvk3YHMj58/s1600/to-put-the-toilet-seat-up.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7UIpgQe1nHtEhGrpgOmsttXYhEsvL80A56voUFaHk5EB7ktPez_YlkgSadqBo8N2I8g7cJq2IwoRv5bkZVqmFvorSN6iwr9aP6BjVaR3pJHBdap9XIC-_Evqe7b61sSEtQrvk3YHMj58/s200/to-put-the-toilet-seat-up.jpg" width="200" /></a></div>
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.)<br />
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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?Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com7tag:blogger.com,1999:blog-8059395179650562655.post-23927949957876881412012-04-28T13:29:00.000-07:002012-09-02T11:36:51.269-07:00The Hybrid Man<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">A, B, O, AB. If you are someone like me, who wishes <i>Grey's Anatomy</i> 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.<br />
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<tr><td style="text-align: center;"><a href="http://www.nesseler.org/picts/mm/Bloodcompatibility.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><img border="0" src="http://www.nesseler.org/picts/mm/Bloodcompatibility.jpg" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Ignore these meaningless facts</span></td></tr>
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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.<br />
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<a name='more'></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
I refer specifically to the few of us who have had <a href="http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation#Graft_types" target="_blank">allogeneic</a> transplants from matched but unrelated donors (a <a href="http://www.ucsfhealth.org/education/matched_unrelated_donor_transplantation/index.html" target="_blank">MUD</a>) and have achieved 100% chimerism (meaning, our birth blood and its generating marrow have been completely replaced by that of the donor).<br />
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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.</span><br />
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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?</span><br />
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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.</span></span></span></span><br />
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<tr><td style="text-align: center;"><a href="http://www.nesseler.org/picts/mm/callus_21915_lg.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://www.nesseler.org/picts/mm/callus_21915_lg.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The callouses came off intact (photo not of me)</td></tr>
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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.)<br />
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On the last day of November, 2011, I had an infusion of my donor's lymphocytes (<a href="http://en.wikipedia.org/wiki/Donor_lymphocyte_infusion" target="_blank">DLI</a>): 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.<br />
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Before proceeding, I should make clear just how rare a DLI infusion is for multiple myeloma. For example, the <a href="http://www.scripps.org/services/blood-and-marrow-transplantation/why-choose-scripps" rel="nofollow" target="_blank">Scripps Blood and Marrow Center</a> (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.<br />
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The wholly unexpected reaction began the next day with a week in the <a href="http://en.wikipedia.org/wiki/Intensive-care_unit" target="_blank">ICU</a> 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 (<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/" target="_blank">GVHD</a>) 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.<br />
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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 <i>gentle</i> 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 <a href="http://www.nesseler.org/picts/mm/hugetesticles.jpg" target="_blank">here</a> 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.</span></span></span><br />
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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 <i>impatient</i> longer than just about anyone else, but that's really not the same thing at all.<br />
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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.<br />
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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.<br />
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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.<br />
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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.)<br />
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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 <a href="http://en.wikipedia.org/wiki/Rapid_eye_movement_sleep" target="_blank">REM</a> 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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<b>P.S.</b> 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.<br />
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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.</span></span></span></span>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com11tag:blogger.com,1999:blog-8059395179650562655.post-28124142057345070772012-01-31T18:20:00.000-08:002012-02-01T08:41:16.214-08:00COMPLETE REMISSION: Part 1.5<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIfJdNlWFzc1PW9le2dofO0-Rh11uB-oGqlVaajMgvMJ0woOhURIoGNUbZPEdpkXx-YPkgYqjvDKHHLXcnIFDmvFeydxAslIChsQtgIDFFsNhzfe-drkNXcl9Xu3KulxYj0ElSpp2r2Qg/s1600/finalcomposit.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="208" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIfJdNlWFzc1PW9le2dofO0-Rh11uB-oGqlVaajMgvMJ0woOhURIoGNUbZPEdpkXx-YPkgYqjvDKHHLXcnIFDmvFeydxAslIChsQtgIDFFsNhzfe-drkNXcl9Xu3KulxYj0ElSpp2r2Qg/s400/finalcomposit.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: justify;">After 2005 auto transplant | After 2010 Allo | After 2011 DLI<br />
Be sure to click on the photo for the large view.</td></tr>
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Today, for the first time since early December, and with considerable assistance, I made it downstairs from the second floor (sixteen steps and a landing), got in the car, then went back upstairs. The went-backing part was considerably more difficult to accomplish than the go-forthing part. Yet I did reach a major milestone, because now I'm free of expensive non-emergency transportation services carrying me at scheduled times to places I don't always want to go. I can go to a restaurant or see a movie or ride over to Lake Miramar just to feed the birds. Automobiles have always meant freedom to Americans, ever since the Model-T Ford, and, now, I'm finally free again.</div>
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The first and second pictures are representative, but the third is not: for those two, all I needed was the photographer. Today, I had a physical therapist (PT) and Ivonne with me, along with a walker. Just out of view to the right is the wheelchair that got me to the spot. In truth, the only time I actually needed something to give me confidence, other than the razor strop the PT tightly cinched to me as if I were a horse, was when the wheelchair had to go down the front-porch steps, but it isn't cheating if I have Ivonne to help. I could probably have gotten myself out by myself through the garage, but what would be the point? I can't drive because of the steroids.</div>
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The photo also misleads in that I seem to look stronger in the third picture than I did after the allo. After the two transplants, I was much stronger than I am today: the GVHD of the donor lymphocyte infusion whacked me harder than my mom when she caught me smoking. There is also some nerve damage, possibly progressive, that makes doing everything arduous. I can't walk without mechanical assistance: I need a walker or a wheelchair, and, if the distance is too far, someone to push me. But at least now I can come to a standing position by myself if I have two good, high handholds and have enough sense to wait until my respiration is normal. Tomorrow will always be easier.</div>
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On the other hand, this is one of the happiest achievements of my recovery.</div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com10tag:blogger.com,1999:blog-8059395179650562655.post-67428030815563223982012-01-28T15:46:00.000-08:002012-01-31T02:03:07.663-08:00COMPLETE REMISSION: Part One<div class="separator" style="clear: both; text-align: center;">
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I haven't blogged since late November, but it's not because I didn't want to catch you up on what has happened since then, but rather because I have been physically and mentally unable to do it. Instead, I went ahead with a <a href="http://en.wikipedia.org/wiki/Lymphocyte" target="_blank">lymphocyte</a> infusion from a second donation from my donor. The result has been largely unexpected, overwhelming, and quite improbable.<br />
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I wrote the whole story this week, but because of its vast length (my longest ever post, something over 2,000 words, so, of course, it had to be shortened if someone else other than myself wanted to read it) and its dark tone (recovery has been, and still is, difficult and dangerous), I'm going to serialize it for emotional consistency.</div>
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My <a href="http://en.wikipedia.org/wiki/Allogeneic_bone_marrow_transplantation" target="_blank">allogeneic transplant </a>from a matched but unrelated donor (also known as a MUD), did put me in partial remission, and gave me a year before progressing, a good year. Then came progression. When allos progress, they often progress rather quickly, and, usually, there's nothing that anyone can do to even slow them down: all chemotherapies are used up; something on the horizon that might help (but not now); followed by a predictable and swift end.</div>
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As I've alluded to, there is a rare procedure for myeloma, however, called a <a href="http://en.wikipedia.org/wiki/Donor_lymphocyte_infusion" target="_blank">donor lymphocyte infusion </a>(DLI), which, if it works, can resensitise the new immune system to attack the myeloma.</div>
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How often is it done? The <i>Blood and Marrow Transplant Center </i>at Scripps Clinic has been in operation for more than thirty years. In all that time, DLIs have been given to myeloma patients only three times. One recipient did survive for something like another ten years, but I believe the chronic graft-versus-host disease (<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/" target="_blank">GVHD</a>) did not make that time pleasant. Another recipient didn't make it. I am the third. The procedure is almost always one in the context of a clinical trial, and should be.</div>
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Although almost routine for other cancers, such as for lymphoma, DLIs are often performed to insure that after an allogeneic transplant there is only one new immune system in the body, the donor's system, with no remnant of the original (a state called "full, or 100% chimerism"). In myeloma, uniquely, chimerism turns out to have no bearing on the outcome of the DLIs. Another reason DLIs for myeloma are rare is the result is not as predictable as it needs to be to be safe for myeloma: nothing at all can result, there's GVHD without an anti-myeloma effect, which can be miserable, and there's death from complications (e.g., liver failure, pneumonia, kidney failure, <a href="http://en.wikipedia.org/wiki/Cytomegalovirus" target="_blank">CMV</a> infections, destruction of connective tissue, alimentary canal damage: the infusion can attack just about anything).<br />
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On the other hand, if I didn't do DLIs, my fate was clear and approaching. Me being me, with a history of phenomenal luck, and after reading the recent journals, I pushed hard to do it. It took some convincing.<br />
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There's no graft-versus-myeloma (<a href="http://www.mendeley.com/research/graftversusmyeloma-effect-two-cases/" target="_blank">GVM</a>) effect without GVHD occurring in less than one hundred days (referred to as "acute" GVHD). After that, if GVHD occurs, it's called "chronic" and provides little or no benefit. So DLIs, when given, are often given at intervals (of several months or longer) to provoke the necessary acute GVHD response. The average time to ultimate response, if any, seems to be four to five DLIs.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiun_Xb5CRPJa8oHs3Ubv8ELxCVreVWfV2dgBI_0gm5ddCreWi_pwVvthuj3mdtuswP-IdlO1cxS4ZrYDl5aAdRoF4Pyr0OnFQQGfry5bn4FOykKGC_2IInqfSrtVIRtZl605nGlEpAIQ/s1600/gradefourtfue.jpg" imageanchor="1" target="_blank"><img border="0" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiun_Xb5CRPJa8oHs3Ubv8ELxCVreVWfV2dgBI_0gm5ddCreWi_pwVvthuj3mdtuswP-IdlO1cxS4ZrYDl5aAdRoF4Pyr0OnFQQGfry5bn4FOykKGC_2IInqfSrtVIRtZl605nGlEpAIQ/s400/gradefourtfue.jpg" width="400" /></a></div>
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<i>There's part or me that didn't want to show you Grade IV GVHD. This is not me, I believe mine was grade III. My skin is red, but returning to normal after exfoliating, my donor must hate callouses, and my GVHD has attacked my liver, skin, and bowels more than anything else.</i></blockquote>
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I calculated the odds from good data for achieving aGVHD on the first shot: less than %5. I expected that there would be no immediate consequences, negative or positive, of the infusion (we were looking for aGVHD to appear perhaps weeks later). In fact, it went down like this: I agreed to proceed on Monday, 28th November; the cells arrived by the next day; on Wednesday they were infused in the afternoon and I went home. By the next day I was admitted to hospital with a horrendous case of GVHD. They doped me with <a href="http://en.wikipedia.org/wiki/Methylprednisolone" target="_blank">methylprednisolone</a>, to suppress the reactions, which caused serious delirium. Apparently, I was unconscious but active, rolling my eyes around to no purpose, attempting to pull out my picc line (I succeeded on the first one), completely out of it. By that evening I was back in the ICU fighting for my life. I'll write about that shortly. Of all of four hospitalizations for myeloma, this was the most punishing. Several doctors thought I wouldn't survive.<br />
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<tr><td class="tr-caption" style="text-align: center;">Three Days after DLI</td></tr>
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But I did survive, and after a few days I was back in my regular room, unable to do anything for myself. Two weeks after the infusion, I asked for a test of my light chains: I wanted to know if all of the suffering I had endured did anything to the cancer. A week or so later, the doctor who pioneered the facility brought me the results, but unlike the five lines I usually see, it was a full page of words. With my head full of steroids, which made reading difficult, I tried to understand what the report was saying: I knew the possible danger of reading into the words what I want to them to say, so it took three times through the realize that the report was saying <b><i>complete remission</i></b>. No sign of "extra" light chains. Further, every one of the three numbers was in the middle of the normal range. The cancer was gone. My luck still holds: I got the 5% result, and enough GVHD to fight the cancer without yet killing me in the process (at least, not yet).<br />
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I was stunned. When the doctor who has directed the Center for more than thirty years leaned over with a flashlight to look in my mouth, I said to him, "Do you mind if I kiss you?" This guy may be in his seventies, and I must admit it was fun to watch him try to react! He'll never forget me now. When he demurred, I said, "But you <i>did</i> hesitate!"<br />
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After that, I had no brain. All I could think about, when I could think at all, was my impossibly perfect outcome from a single DLI, and the sequence of events that led to it as well as the rapid consequences: immediate response, effective response, GVM, first try. With respect to likelihood, we scientist types like to use the phrase "vanishingly small," as in, "the probability of that event happening is vanishingly small." This refers to anything theoretically possible, but with a probability of occurrence so low that it would never occur in the real world. Many of these near-impossible events had to happen to get me to this point, which are on this blog somewhere below.</div>
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What do I do with that? The eternal question arises: why me? I feel, probably illogically, as if I have acquired a responsibility, but I'm not sure what it is let alone how to carry it out. In earlier posts I've detailed all of the unlikely events from which I've benefited, but this latest is overwhelming. The only thing I know I have to do is finish the book, even if I end up being the sole reader.</div>
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CR, on the average has just given me another multi-year lease on life without cancer: the present curves suggest five years or more. There is also a non-vanishing possibility that I'll never see multiple myeloma again.<br />
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Last Wednesday I spent hours in the hospital, as I have to do once a week. When they wheeled me into Hematology on my wheelchair, for some reason I was left in an open space for a time. During that time all but one of the doctors who had treated me walked by and said hello (the other one I saw earlier). I'm guessing it was a shift change, but it was then I began to realize that my survival is a huge triumph for the doctors and nurses, too.<br />
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Next post will tell you about what the DLI did to me and is continuing to me. I thought that after the allo in 2010, nothing could possibly be as difficult from which to recover. I was wrong.<br />
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</div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com13tag:blogger.com,1999:blog-8059395179650562655.post-18281822103406733002011-11-04T14:52:00.000-07:002011-11-04T14:52:03.495-07:00A Reason for Hope!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyjmzSK2nVeLFX7Il1uAqfSgo5aNtbm7Om9t3Uz0oR6dqMXrziz1B7giYBGaLOC5J9JjkXRwOCWPIx5zoFOlGsqMYT0KoQOXKL_eRNEhVh3CDtRttUHo4huMknB3kvIleHDSRZFADbWgo/s1600/8644114-a-nurse-in-hospital-with-blood-bottle-infusion-of-donor-blood.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyjmzSK2nVeLFX7Il1uAqfSgo5aNtbm7Om9t3Uz0oR6dqMXrziz1B7giYBGaLOC5J9JjkXRwOCWPIx5zoFOlGsqMYT0KoQOXKL_eRNEhVh3CDtRttUHo4huMknB3kvIleHDSRZFADbWgo/s1600/8644114-a-nurse-in-hospital-with-blood-bottle-infusion-of-donor-blood.jpg" /></a></div>
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I perked up considerably this week when I heard that my young donor has agreed to donate again! In fact, she will be making the donation on the eighth of November, and the cells, on ice, will be flown to San Diego the following day where they will be divided and frozen. So, in about a week I will receive my first lymphocyte infusion (<a href="http://www.jcojournal.org/content/18/16/3031.full">DLI</a>). Cure is still a possibility!</div>
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We do have sufficient cells left over from last year's transplant for one big infusion, so my continuing survival wasn't entirely riding on the decision of my donor. However, a one-time, big infusion (which is how donor lymphocytes were given originally) could very well have given me severe graft-versus-host disease — even to the point of being fatal. While we have to have GVHD to have a graft-versus-myleoma effect, the risk of a big dose is unnecessary. If given periodically in lower doses, DLIs are just as likely to produce a response but are much safer. We could have gone with the Big Dose weeks ago, but I thought asking for another collection was worth the risk of delay. I wasn't terribly worried that she (my donor) would decline to donate a second time: people who have actually donated, and not just registered their intention to do so, will almost always do it again if needed.</div>
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I must tell you, my life has been bleaker and more desperate in the last few weeks. The reaction to Velcade and Decadron, my reinduction chemotherapy, has been horrible. By the end of the cycle, I had deteriorated so much that I was predicting to Ivonne that I would be in hospital within days: I had become so weak that I could do little but lie in bed; neuropathic pain forced me to take six times my usual dose of pain killers (which blunted but did not control the pain); I did not want to eat; I would sleep for a few hours, wake up for an hour or two, then return to sleep. Because of an episode in early 2011 of <a href="http://en.wikipedia.org/wiki/Tardive_dyskinesia">tardive dyskinesia </a> after taking a tiny bit of Seroquel, I no longer am able to use a small dose of a major tranquilizer as a sleep aid. Eyes Wide Open!</div>
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The worst part was going through the agony of chemotherapy with little hope of success. My cancer had become resistant to everything but dangerously-high levels of dexamethasone by 2009: why should it be anything other than <i>more</i> resistant now?<br />
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<a href="http://www.nesseler.org/pages/mm/charts/30oct2011.htm" imageanchor="1" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_LZHMdrHrNWt4izMj_oFJaH8hLIisasM2pZ9oKyxI2nN0qZtU7ZLMfTdxr40_r3w3mjthg-0hUdi72wSo0BM9jsDsLg8ijuXag0mqg_5e6hsU7WB4-BbABBcJJDVg22yuzzUSUp9qyCo/s400/30oct2011.jpg" width="400" /></a></div>
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And there's the surprise: this week's measurement demonstrated a significant drop in the level of cancer. A chemotherapy that failed me years ago is now working. This is wonderful news because the likelihood of achieving remission after donor lymphocyte infusions is greater if you demonstrate a response to reinduction chemotherapy!<br />
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<tr><td class="tr-caption" style="text-align: center;">The right eye is damaged. Click for larger view.</td></tr>
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Not all the news is good, though. Myeloma has attacked my right optic nerve in the form of non-arteritic anterior ischemic optic neuropathy (<a href="http://www.lowvision.org/ischemic_optic_neuropathy.htm">AION</a>), a devastating disease leading to blindness. I have some vision at the moment, but not much. The left eye has not been attacked thus far, but both eyes are often affected. If I make it three months without losing the left eye, I will probably be safe. The only thing that can be done to protect my remaining eye is to fight the cancer, which is something you can safely bet that I'm doing.<br />
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Since recently accepting that I had fallen out of remission after the allogeneic transplant, I have had to also accept the likelihood my impending death (median survival at progression, 4-6 months). I've been addressing all of the pressing things a dying person has to do to make life easier for those he will leave behind. I've been once more thinking about my Bucket List, although it is much emptier now than when I first wrote about it years ago. But the sadness was inescapable. I had the the sense that most of the things I thought important to do would be for the last time. For example, I've been showing Ivonne my favorite movies (<i>Casablanca, African Queen, Lawrence of Arabia, </i>etc.) being quite aware that I would never be seeing them again. I've been teary. I've worked hard to be a good father and husband, protecting my family and guiding them. I've been in the arena with Death for so long now I've become inured to my inevitable defeat: I've fought the best fight I could, which is comfort enough. I grieve rather for the sorrow and hardship I will leave behind.<br />
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Well, screw that! The game's not over <i>yet!</i> The oppression on my heart has lifted. Cancer, I'm ready for you. Take your best shot! You are MINE!<br />
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<br /></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com8tag:blogger.com,1999:blog-8059395179650562655.post-84498178835018656192011-10-21T13:18:00.000-07:002011-10-27T07:24:38.531-07:00Border Tales, Part 1: Advance Parole<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDVEs6o82O5LHHcrkrdO6hQDkFq7NEIna2xJ8twNgQK2QW-9utccxkuwGzACbQbErTWhYxEaZO8CqjzaxOp2w4wMqFxYVxpznx6HX0fRK8z3uPyf1WHqPoZB_T6RhFlZJT_KTGkmS_cDA/s1600/San-Ysidro-border-crossing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDVEs6o82O5LHHcrkrdO6hQDkFq7NEIna2xJ8twNgQK2QW-9utccxkuwGzACbQbErTWhYxEaZO8CqjzaxOp2w4wMqFxYVxpznx6HX0fRK8z3uPyf1WHqPoZB_T6RhFlZJT_KTGkmS_cDA/s400/San-Ysidro-border-crossing.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>The little brown man in the dark blue uniform stared at me with steady eyes that revealed absolutely nothing: they very well might have been buttons sewn onto his face. He was small in stature for a Migra (Border Patrol Agent), and old in a weather-beaten way. Despite his stature, I could tell he could put me on the ground in two seconds without breaking a sweat. He said, "There is another paper." He stared at my face intently, without revealing anything it all, perhaps not even blinking, without impatience, stoically waiting for my response. Time stopped.<br />
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My thoughts were racing: I said, "This was the only paper we have!" His response never varied: "There is another paper." He never took his eyes off my face nor revealed anything in his. My fear was building as I tried to understand what this mistake might mean.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhePLdxZPqqZzcyJ1F9O2_u1PBJW43VDkgB21_fGod8N7GPj2m3ruMK3vcmjIZY-mnOi_uDqNzYahvPtj6fsQjUqyLszQ3XIbBqiGx-A3GpqRmP6lynIMtAO0gRFtsqI870-XhNION-rw8/s1600/san-diego-border-patrol-agents.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhePLdxZPqqZzcyJ1F9O2_u1PBJW43VDkgB21_fGod8N7GPj2m3ruMK3vcmjIZY-mnOi_uDqNzYahvPtj6fsQjUqyLszQ3XIbBqiGx-A3GpqRmP6lynIMtAO0gRFtsqI870-XhNION-rw8/s200/san-diego-border-patrol-agents.jpg" width="145" /></a></div>Ivonne, who was going through the immigration process (torture?), had just received a notice of immense importance to us, her Advance Parole. No day was more eagerly anticipated by us than this one. Finally she could go home.<br />
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I knew nothing about immigration before marrying Ivonne. I just remember all the war movies that ended with the soldier telling the immigration officer, this is my wife! She's French! And the officer saying, "Welcome to America!" That image is now quaint. Today the process is expensive, long, and dangerous. From the first moment you file the paperwork, both of you are considered criminals until proven otherwise. Do you like the term, "Advance Parole?" Paroled from what? Some form of imprisonment?<br />
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Yes, exactly.<br />
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There are two ways a family member can immigrate to America. The longest, most expensive, and most dangerous, is called Consular Processing (CP). In CP, all of the investigations and processing must be done in the foreign country. Further, there aren't that many places in a foreign country where the processing can be done. For those who live near the US/Mexican border, that means long trips to Ciudad Juarez, one of the most dangerous cities in Mexico, where the US Consulate and associated medical clinics do the processing. It can require years of separation between you and your bride. I didn't have years.<br />
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The other available way, if the alien is legally in America, is called "Adjustment of Status." (I am becoming annoyed at referring to my lovely wife as the "alien:" she is not green and does not have eyes on the end of stalks.) In Adjustment of Status, along with the form I have to file, the I-130 requesting my spouse be allowed to immigrate to live with me, she can file an I-485 for herself at the same time that that says 1) I'm already here legally; 2) when you decide on my case (Lonnie's I-130), I ask La Migra to adjust my status to that of Permanent Resident. All processing takes place in America, and it's cheaper and quicker.<br />
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That's how I brought Ivonne over. She had a long-term tourist visa (B2). This visa is for people who live on the border who need to cross often for shopping, visits to relatives, to doctors, and so forth. They have to own property in Mexico for several years, have a solid work history, pass criminal background checks and have a clean immigration history, demonstrate strong family ties to the border city in which they live, and so on. They won't give you a visa if they think you might disappear into America with it.<br />
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So my new wife and I could stay together until her status was settled. But along with this process comes a terrible restriction: under no circumstances can she leave the country before her case settled. If she did, her visa would automatically expire and be confiscated and she would not be allowed back. Her processing would revert to Consular Processing, which would delay her entry for years.<br />
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A few weeks after we were married, for a period of about four months, she stayed here with me. The problem with that was that her father in Tijuana has a couple of chronic illnesses, and her four children were there as well (then aged 11, 13, 14, and 15)! Although all but one had visitor's visas, and could occasionally visit their mother here, such visits cannot substitute for the care they really needed. If anything went wrong, what would she do? Could she stay here while, for example, her father died or her children were dangerously sick or seriously misbehaving? Where would the children live? Who would look after them? How would they go to and from school? Do the laundry? Feed themselves?<br />
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We were very lucky. Nothing truly bad happened. Ivonne's enormous family took care of the children, their grandfather made sure they got to school (and bought them a lot of fast food), and no one was hurt or seriously ill during that time.<br />
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The separation was about to end when the magic paper arrived, the Advanced Parole. She was given permission to leave the country (USA) and return as needed until her case was settled. She could be with her children again! I had set up a video link so that they could see each other and talk, but there are no digital hugs over the Internet. It was a difficult time.<br />
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The reason I was staring at the little blue-uniformed man was that this was our first attempt to use her new privilege. We decided to surprise everyone on New Year's Eve day by first finishing the process (there are things that have to be done at the border before she can just come and go), then crossing a second time to be with the family.<br />
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We parked the sedan by the McDonalds on the US side, walked over a long, grueling set of bridges and ramps, then waited in the line to enter the US visa office on the Mexican side. I remembered to bring my cripple sticker with me, so we were allowed to go to the front of the three-hour line where we ran into the little brown man who looked at what we brought, then asked, "Where is the other paper?"<br />
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Horrors flooded my mind. We were on the Mexican side of the border with inadequate papers. They might not let her back into America. We'd have to start over with Counselor Processing, adding months or years of virtual separation and thousands of dollars to the process. All the frightening months of enforced separation which we thought were behind us would have been for nothing!<br />
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While these thoughts were going through my head, the little man never blinked, never took his eyes off of me, never said a word. I was practically swooning and could feel despair rising. Finally, after long moments, I turned to him and said, with resignation in my voice, "What do we do now?"<br />
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This was apparently the right answer, or, rather, the right way to answer. He came alive, took me by the arm, and pointed to a bench across the way: "Go, sit on that bench!" I was confused, bewildered, so he repeated himself: "Go, sit on that bench and wait." (It should be the motto of the immigration process: <i>Sit Down, Shut Up, and Wait!</i>)<br />
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As I wobbled off to the bench, he took Ivonne into the windowless building. It was a cold, concrete bench that gave the impression of never having been used. My future was flashing before my eyes. I was about to lose the luckiest and best thing that has ever happened to me. Would she be deported, her visa confiscated? Would we have to start over? We were newlyweds—when could we possibly be together?<br />
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What seemed like hours passed with me in this horrible state, although it was probably more like twenty minutes. Filled with fear and despair, all I could do wait. I remembered the other sheet of paper: it was a duplicate of the one we brought. I thought it was for our records! Ignorant fool! Stupid!<br />
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Then, looking for all the world that nothing important had happened, out she came, smiling and calm, as she always appears on the outside when in the presence of La Migra, and as I stood up to walk with her across the border for the first time. I said, "What the <i>hell</i> happened?" She told me that the little man took her to a station where the papers were to be processed. The woman looked over what we had and said, "Where's the other paper?"<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj55GoNdNmdNEnZ-bEOYsurDy4nkhBOOIbNDfq6y1GH_4r4ZiuDqbbwqYJ9Xg_gwV06qFNCs1Mmb0Rm_fRtdTa6RG9EK5-joWZfy2GJ0Cqbq_t0APTl9uj_i3SiJ3sXstKNrI1mCEEa0yo/s1600/Used-Xerox-Copier-dc4.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="190" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj55GoNdNmdNEnZ-bEOYsurDy4nkhBOOIbNDfq6y1GH_4r4ZiuDqbbwqYJ9Xg_gwV06qFNCs1Mmb0Rm_fRtdTa6RG9EK5-joWZfy2GJ0Cqbq_t0APTl9uj_i3SiJ3sXstKNrI1mCEEa0yo/s200/Used-Xerox-Copier-dc4.gif" width="200" /></a></div>The little brown man replied, "Make a xerox!" then wandered away. That was it. We were free, except for a bit of final nonsense at the actual border line as final checks were made.<br />
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We walked to the car, then crossed much more easily a second time to go to her father's house, where no one was expecting us. I sat in the car for a time and simply watched as Ivonne and her son, Ruben, each other for the first time in months. Ruben had grown at least two feet and was now, much to her surprise, as tall as she. They stared at each other. She saw a bump on his chin, and said, "You have a pimple." To say that the reunions were, well, "moving" would be using an wholly-inadequate predicate adjective.<br />
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We spent a long time with them: it was the first time we had been all together, and I was to meet Ruben, her son, for the first time. I was reminded of <i>The Lord of the Flies </i>at the moment that Brit Navy finally rescued the children: for a moment, the children couldn't understand what had happened, and when they finally realized they had been rescued from having to govern themselves, as if they had been adults, they started to cry. They could be children again: their mother was back!<br />
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Well, only for a few hours. But now she could travel to Mexico as needed to do laundry, clean house, make dinner, help with homework, settle disputes, all the things that make a child's world feel safe.<br />
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I told the children, in my very poor Spanish, that we would now be bringing them all to America as soon as possible. Ruben, the one boy, is a quiet sort, often seeming to be not part of the group, not perhaps even thinking. But deep inside was a great fear: his father had lost his visa, or sold it, so perhaps he wasn't going to be able to come to America with the others.<br />
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By way of explanation, and I hate to sound racist, but little Mexican boys do look a lot alike. If they have a visitor's visa, it can be sold to someone, a Coyote, who finds another boy that looks very much the same. They cross the border, $3000 changes hands, the visa is returned to the Coyote, and the process is repeated until they are caught or the visa expires. We suspect his biological father sold his visa. Ruben was stuck in Mexico and had to endure Consular Processing.<br />
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Deep inside, he was afraid that he would be left behind. I told him not to worry, the problems with his paperwork in Mexico meant nothing. "I am an American, you are my step-son, I will ask for you and they will agree. Nothing can happen here that will prevent your being with us. There's nothing your father can do to stop us." When I explained this to him, and my meaning sunk in, his whole body shuddered as if he were having a convulsion, as relief flooded his body. I even gave him my promise that he would be the first to cross. Mi promiso! That turned out to be a bridge too far: he was actually last. As it turned out, it took a lot longer to bring him to his new home than any of us had imagined, and the process was costly and dangerous, but that's a story for another time. Today, we are all here in Scripps Ranch, all four are attend great schools, and, as of about a month ago, they made the psychological shift: San Diego is now home for them; Mexico is where they were born. (Can you hear me sigh in relief over the keyboard?)<br />
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PS: If I had answered La Migra in some other way, and she had been denied admission and had to restart the with Consular Processing, I would probably not be alive today. When we married, I was in partial remission and doing fine, but two months later it was clear that I had lost all control of the cancer and had little time left. The doctors would not have offered me the allogeneic transplant had I not had an adequate support system at home for my recovery. Fortunately, Ivonne had shown in many ways that she could and would take good care of me, so that never became an issue, insofar as I know, in the decision to put me into a research program for allogeneic transplant in myeloma. I needed more care than any of us had envisioned, and she gave it to me.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com2tag:blogger.com,1999:blog-8059395179650562655.post-28731168282168387552011-10-21T08:38:00.000-07:002011-10-22T03:34:47.797-07:00Steve Jobs Delayed Surgery in favor of Internet treatments!<h6 class="uiStreamMessage" data-ft="{"type":1}" style="margin-bottom: 5px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; word-wrap: break-word;">
<span class="messageBody translationEligibleUserMessage" data-ft="{"type":3}"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small; font-weight: normal;">Steve Jobs infuriated family and doctors by putting off surgery in favor of alternative treatments. For more than a year, he relied on "fruit juices, acupuncture, herbal remedies and other Internet treatments." While being one of very few people who have had their cancer's complete gene sequence identified, he dabbled in medical voodoo.<br />
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Even the most rational of us, in the face of a terrifying diagnosis, can act like fools even to the point of foregoing or delaying treatment. I have known well some who shortened their lives by avoiding "chemo" or surgery in favor of treatments of no proven value (and, in the case of immune boosters in Myeloma, may have intensified their disease). My friends have tried all-fruit liquid diets, coffee enemas, magnetic "alignment" machines (Rife), and ruinously expensive quack treatments in Tijuana, just to name a few.<br />
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The challenges of effectively fighting a dangerous cancer are numerous. If the cancer is rare, average doctors are often unaware of current research and treatment and still administer VAD, or MP, to a younger patient: they look in the book written years ago, and do what it says. The disease is occult, so we often ruin our quality time obsessing over medical tests during periods where there is no need for us to do so. But the biggest obstacle is the fear of dying: we wouldn't be human without that fear, but allowing it to drive the decision-making process must be overcome. When a disease is incurable and universally fatal, we, as patients, have a greater right to discuss treatments with our doctors and make choices than do those with common, curable illnesses: this is because all of our alternatives are, in some sense, bad. Pick your poison (rationally).<br />
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But too many are like Steve Jobs. Timely surgery might not have helped, but delaying it certainly did not help. Why would an otherwise brilliant man act so stupidly? He let fear (and, perhaps, denial, the other great mechanism for self-defeating behavior in cancer) get the better of him. My book, if I can live to finish it, is about how to embrace fear squarely and disconnect it from medical decisions while also fighting cancer with evidence-based medicine. It suggests ways to improve ones remaining quality of life by giving the cancer as little time and effort is possible. <br />
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Right now, in my personal battle, QOL has become an issue, mostly as a result of doctor indecision (but also due to Velcade, dex, and a stupid cold). I did my homework, I know what I want to do, but getting it through the tumor board is proving to be challenging. While waiting in suspense through this infuriating bureaucratic delay, my good time has diminished, but, hopefully, in a week or so, the course will be decided and I can return to fully living my life.<br />
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Here's the story:</span><br />
<a href="http://tinyurl.com/3hhxzl3" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; font-weight: normal; line-height: 14px; text-decoration: none;" target="_blank">http://tinyurl.com/3hhxzl3</a></span></h6>
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<a aria-hidden="true" class="external UIImageBlock_Image UIImageBlock_MED_Image" data-ft="{"type":41}" href="http://tinyurl.com/3hhxzl3" rel="nofollow" style="color: #3b5998; cursor: pointer; float: left; margin-right: 10px; text-decoration: none;" target="_blank" title=""><img alt="" class="img" src="http://external.ak.fbcdn.net/safe_image.php?d=AQDvlnoXTaAUZ_SA&w=90&h=90&url=http%3A%2F%2Fgraphics8.nytimes.com%2Fimages%2F2011%2F10%2F21%2Fbusiness%2FJobs%2FJobs-thumbStandard.jpg" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; max-height: 90px; max-width: 90px;" /></a><br />
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<strong><a href="http://tinyurl.com/3hhxzl3" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">New Book Details Jobs’s Fight Against Cancer</a></strong></div>
<span class="caption"><a href="http://www.nytimes.com/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.nytimes.com</a></span><br />
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A 630-page biography on Steve Jobs also includes previously unknown details about his romantic life, his marriage, his relationship with his sister and his business dealings.</div>
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</div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com1tag:blogger.com,1999:blog-8059395179650562655.post-29438558539726667422011-10-14T15:28:00.000-07:002011-10-15T10:07:56.537-07:00Seconds to go! Time for the Hail Mary pass!After the usual tests, plus a bunch more, it became clear that my new immune system can no longer contain the cancer. The speed with which my markers are deteriorating is frightening. The cancer (<a href="http://en.wikipedia.org/wiki/Serum_Free_Light_Chain_Measurement">FLCs</a>) jumped by a factor of 1.7 in one month and is accelerating. Pain from neuropathy is also worsening: I needed only one Vicodin 5/500 a day for pain, but now I need up to three. And if that weren't enough, I'm losing the sight in my right eye due to myeloma light chains attacking the right optic nerve (which isn't brain cancer). I'm not even going to mention <a href="http://en.wikipedia.org/wiki/Erectile_dysfunction">ED</a>!<br />
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This chart begins after the allo. The kappa low point was </div>
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15.3. Today it is 141. Normal is 1.94.</div>
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For those of you who understand lab tests, alkaline phosphatase is 195 (below 126 is normal), Beta-2 microglobulin is 4.5 (normal 1.7 or lower), and my IgA is low. Potassium is low, too.</div>
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The cancer is no longer under control; in fact, insofar as I can tell, it is not even being hampered in its exponential rise. In essence, the new immune system has "decided" that these malignant plasma cells must be normal and has stopped fighting them.</div>
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What does this mean? From survival charts I've put on the blog before, and after studying more recent data, it will be rare if I survive another six months. I am going to try once more to shove the Beast back into its cage, but the odds are against me this time. I'll tell you what I'm doing a little later in this post.</div>
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I've written extensively on this blog about the End Game. You've reached the end game for sure when your doctor says, "I'm sorry, there's nothing more I can do for you: I will be calling hospice immediately." Of course, if you've been awake and aware, you know it is coming, and from that time on, you're in the End Game even if your doctor hasn't yet said these hopeless words to you. You might be working on your bucket list long before you actually have reached the End Game, but it will in all probably change when you've passed the anticipation stage and are firmly in it as a player.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiazhQFHJc9jlHJuihILleOL3mIjXTPzXTTON9MS28vk-bcGlXAkSaPcyGoDoC10prIE6USYJWuYSCibYscd9jg3b2AWnmdfLBW2Hk1vw9EFM2xQ4RUPGuk3it5RB-u0S2v_xzPIP2JZs/s1600/Old_Oaken_Bucket_Big.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiazhQFHJc9jlHJuihILleOL3mIjXTPzXTTON9MS28vk-bcGlXAkSaPcyGoDoC10prIE6USYJWuYSCibYscd9jg3b2AWnmdfLBW2Hk1vw9EFM2xQ4RUPGuk3it5RB-u0S2v_xzPIP2JZs/s200/Old_Oaken_Bucket_Big.jpg" width="200" /></a></div>
Of course I was delighted to put that subject behind me when I responded to the transplant in June 2010. Now I'll have to take it up my Bucket List again and, perhaps, finish it. If you want to catch up with my musings on the subject, <a href="http://nesseler-medical.blogspot.com/2009/03/end-game.html"></a><a href="http://nesseler-medical.blogspot.com/2009/03/end-game.html">here</a> is a good place to start. There are also a few posts about my <a href="http://nesseler-medical.blogspot.com/2009/03/my-bucket-list.html">Bucket List.</a> <a href="http://nesseler-medical.blogspot.com/2009/04/more-on-bucket-list.html">This</a> one too. In the next few weeks I'll be revising my list and will post it, most likely, as My Final Bucket List, which may include the things that were on the list that I achieved or abandoned, as well as any new things. (I really should see the damned movie, but I can't seem to get around to it. I have the idea.)<br />
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For a while, two weeks ago, I suffered from iatrogenic whiplash. My doctor swept in with a cheery, "Haven't we cured you yet?" He was all for <a href="http://en.wikipedia.org/wiki/Donor_lymphocyte_infusion">donor lymphocyte infusions,</a> DLIs, which are direct infusions of the same cells that were collected from my young female donor for the June 2010 allogeneic transplant (NMA/RIC, or non-myelo-ablative reduced intensity conditioning allogeneic transplant). It appears that we have one bag of her cells we didn't use, and that bag had the right number for a one-time infusion. These days, it is usual to give lymphocytes in periodic, escalated doses, so several bags are collected of just the right size. After the first dose is given, there's a period of watching that may last months. When the effectiveness (or lack thereof) can be assessed, another, slightly larger dose is given. And so on. There's a clinical trial that proves that escalated dosing is as effective as one big infusion but is much safer. If we can't get new cells from my donor, then we throw the long ball with the big bag we have.<br />
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The whiplash came later, when the doctor came in, all down and stuff, and said he had been talking with the transplant board (in other areas, it's a "tumor board"). They didn't think we should go forward because there's little evidence of effectiveness of DLIs working when the patient is maintaining 100% <a href="http://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation#Non-myeloablative_allogeneic_transplants">chimerism</a>. Which I am.<br />
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What that means is that a chimerism test demonstrates that all of my cells belong to my donor. Often the donor cells show up as a second chimer, especially at first. That's when DLIs are normally given, with the purpose of putting the patient into 100% chimerism. (Now you may be wondering, with a great number of malignant plasma cells from my old blood causing trouble, why they don't show up on the chimerism test? Answer: inadequate chimerism test for myeloma.)<br />
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In any case, by the next day I had found a recent journal article in <a href="http://www.nesseler.org/pages/mm/allo/Blood-2004-Lokhorst-4362-4-1.pdf">Blood</a> describing a clinical trial that proved that the degree of chimerism is irrelevant in the prediction of remission from DLIs in multiple myeloma. The proper goal of DLIs isn't to achieve complete chimerism, but to achieve remission! The old rules have the wrong goal. So we're on again.<br />
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I had let myself slip into patient mode when the transplant started. You see, an extensive knowledge of myeloma has little to do with what the transplant doctors have to know during the procedure. They worry about engraftment, infections, kidney function, pulmonary problems, things I don't know anything about. So I just relaxed into the presumptively-benevolent care of the doctors like a normal patient. I snapped out of that mode too late. We probably should have done the infusions last June, when it was clear that I was slipping out of remission. We should have built DLIs into the plan from the beginning so we wouldn't have to be going through this goat screw now to obtain them. I've spent the better part of the last two weeks downloading recent (and expensive) journal articles to support donor lymphocyte infusions for patients in my situation. There was a clear path forward. I explained it, justified it, and, now, were on it.<br />
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To make my dire situation clear, there's about a 12% chance of dying from DLIs as a result of acute graft-versus-host disease, and a combined 30% chance of achieving either PR (partial response) or CR (complete response). The rest of the responses vary from none to hellish GVHD.<br />
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Beween now and the first infusion, I'm doing dexamethasone and Velcade (by infusion for now, until insurance approves subcutaneous injection at home). One 10mg dex by infusion kept me up the entire night last night. I used to use a tiny bit of Seroquel, a major tranquilizer, to put me to sleep, but two years ago it gave me an episode of tardive dyskinesia, which in turn gave me the worst night of my life. Thank my lucky stars the episode ended about eight hours after it began. From now on, I can't touch major tranquilizers, so I have to stay awake on dex days (and nights).<br />
<br />
Wish me luck. If I only get a partial remission, it may be enough to get me through to the approval of <a href="http://en.wikipedia.org/wiki/Carfilzomib">Carfilzomib</a>, the latest and greatest imid for us. A complete remission could last for years, so I could start working seriously to get a job.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com10tag:blogger.com,1999:blog-8059395179650562655.post-36640389835177519522011-09-17T11:37:00.000-07:002011-09-17T11:37:48.632-07:00Eulogy for Ebbe<div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;">Ebbe Skov was diagnosed with multiple myeloma, an incurable, universally fatal cancer, in 1999, less than a year after I was. In such a horrible context, it was great good luck that I met him and his devoted wife Margrit at a local support group meeting. A difficult journey into a strange and terrible land is always easier with amiable companions, and he was certainly that for me: always cheerful, supportive, objective, and reliable. He belonged to a like-minded group of us who fought the disease together in a similar way: now, I’m the only one of us left.</span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 15.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;"></span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;">We were scientists who fought our disease like scientists. Ebbe read every relevant journal article he could find; plotted the mathematics of his disease on charts and spreadsheets; and knew his options better than his doctor, whom he doggedly tried to educate. He did his homework, which many of us are unable or afraid to do.</span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 15.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;"></span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;">Ebbe managed to be vigilant without being afraid, which is a rare accomplishment. I’ve never known anyone who monitored his condition as closely as he did, which, for him, was a requirement. While most of us have bone tumors which are easy to sense, because they hurt, his could be anywhere, symptomless: around the throat, over the heart, or in any soft tissue. He was regularly besieged by them.</span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 15.0px;"><br />
</div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;">Yet throughout the ordeal, I found his spirit to be truly remarkable. Fear did not bend or break him as it does so many others. He did not panic, nor did he feel sorry for himself: I never heard him say, “Oh, woe is me,” “This is so unfair!”, or a bewildered “Why me?” Instead, he donned his armor, polished his sword, and went after the Beast with everything he had. He fought an heroic battle despite knowing he would eventually lose: a rare man indeed, a leader and an inspiration to the rest of us who must follow.</span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 15.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;"></span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;">My theory is that the bravest and most successful cancer warriors have the support of a strong woman, and Ebbe certainly had that. Despite the heavy bludgeoning of fate, Margrit was forever beside him, loving him, lending her strength. As a result, he lived more than twice as long as most of us do.</span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 15.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;"></span></div><div style="font: 14.0px 'ITC Stone Informal Semibold'; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="font: normal normal normal 14px/normal 'ITC Stone Informal'; letter-spacing: 0px;">My personal journey will be harder now without him. Good bye, Ebbe, dear friend!</span></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com2tag:blogger.com,1999:blog-8059395179650562655.post-61412894774891437652011-09-13T10:41:00.000-07:002011-09-13T11:12:07.274-07:00Once more unto the breech, dear friends, once more<div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.nesseler.org/pages/mm/charts/31aug2011.htm" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGMB6tn5ijcQqWRm1MS8cnI6ToZWKoVzEmtxqEOOyYP1lahDBjchKGhMatc0YevRhb8-zi5qzb8BtG6P_ThnUw4MvBfZsuiVXhK3sUQBK_rY4CKjl30qSz8KfvFAdhW9yTobVA7xHfgJc/s320/birdfeeder.jpg" width="240" /></a></div>This morning I was up early despite having a restless night. My second-floor bedroom opens unto a small balcony. I listened to the birds at the feeder about ten feet away: it hangs from a nail under the eaves. Actually, what roused me was what I was not hearing: the raucous sound of finches, sparrows, doves, and the occasional scrub jay squabbling over the six prime feeder positions. (Although at first glance they appear to be fighting, their beak-to-beak pecking is stylized: they are careful not to do each other any real harm.)</div><div><br />
</div><div>Then I realized I hadn't filled the feeder last night. As quietly as I could manage it, I slipped out of bed, put on my shoes, and slowly and carefully opened the screen door: I didn't want to wake Ivonne. I keep a weather-proof box of black-oil sunflower seeds on the balcony. A full feeder barely lasts one day. I failed, though, to be sufficiently stealthy to avoid rousing Ivonne. But, now, after doing a full St. Anthony, the normal, meaningless, and quite satisfying sound of dozens of birds once more enhances my morning bagel and coffee.</div><div><br />
</div><div>I absorb myself in an <a href="http://www.nytimes.com/2011/08/30/science/space/30nasa.html?_r=1&ref=science">article</a> in today's New York Times that seems to herald the end of the manned-space era. A couple of weeks ago the Russian cargo ship, a <a href="http://en.wikipedia.org/wiki/Soyuz_(spacecraft)">Soyuz</a>, crashed on its way to resupply the three astronauts who struggle, some would say vainly, to do meaningful science in low-earth orbit. For safety reasons, the leaders are discussing bringing them home. What do you think: if we come home, will we ever go back?</div><div><br />
</div><div>Reality is crashing in on the science-fiction dreams of my boyhood. What can be reasonably done has been done. We won't be traveling to distant planets, or warping time and space: we're stuck here and have to make the best of it. The landing on the Moon in 1969 was our high point as a species, literally and figuratively, a triumph of technology and imagination. Mankind had been wanting to go there since the first human looked up from the ground, agape, at the night-time wonder of it. We not only achieved that ancient dream, but, being Americans, after all, we broadcasted it live on TV. Nothing we can imagine could possibly top that, not even Texas' plan to show its executions on pay-per-view.<br />
<div><div><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>TREATMENT TIME</b></span><br />
Hope is not a strategy. I'm not one to sit idly by, hoping that things will get better. But I'm also as prone to denial as anyone else, especially when the vicissitudes of life are largely resistant to my control. While I killing time and powerful space aliens in <a href="http://www.amazon.com/Duke-Nukem-Forever-Xbox-360/dp/B002I0HAC6/ref=sr_1_1?s=videogames&ie=UTF8&qid=1314560539&sr=1-1">Duke Nukem Forever</a>, my light chain numbers, which, for me, measure cancer activity, are rising. Take a look at my latest post-transplant chart:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0RyrMvvfW46Vak1IeUQUs_e40AVoavQcnLRrPHGOlHLhcpXN97j7qfg2RMb8fKh2lEha9d2kLyKp5_F0KJxLIMdvRWuZsbUrRNPT4khWAsLaDI_T-A6FzCtUcpoWUsZjY8eyKaFWXEPc/s1600/31aug2011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0RyrMvvfW46Vak1IeUQUs_e40AVoavQcnLRrPHGOlHLhcpXN97j7qfg2RMb8fKh2lEha9d2kLyKp5_F0KJxLIMdvRWuZsbUrRNPT4khWAsLaDI_T-A6FzCtUcpoWUsZjY8eyKaFWXEPc/s400/31aug2011.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Click above for bigger and interactive version</td></tr>
</tbody></table>The red line, which is my kappa, is now at 84.8 mg/dL, the highest it's been since the transplant. The nadir, 15.3, occurred in March. For someone who, pre-transplant, withstood a spike of 2140 (normal is 1.94), I'm not rushing out to buy a cemetery plot, but I am afraid: once more I must work through the inner process of drowning it in the bathtub. To rely on hope would be expecting to see a spontaneous drop in the future: after all, as you can see from the red line, the value has risen and fallen on its own more than once since the allogeneic transplant. However, what I'm seeing now looks more like a trend than a seesaw: the numbers have been rising since late May. The faint black line is a computed kappa trend line: no complicated analysis is needed.<br />
<br />
One of the most difficult challenges in fighting cancer, especially one that is generally incurable and usually fatal, is to decline to ride the prognosis roller coaster that careens from denial to despair and back, pausing at times for brief moments of elation. Not every change of state is meaningful: even when a change <i>is</i> meaningful, the normal emotions engendered by the swings don't help. Fear is cancer's natural ally. My slowly-proceeding book is, in part, how to disconnect the corrosive and often deadly effects of fear. Wallace Stevens said it best:<br />
<br />
<div style="text-align: center;"><b><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">THE SNOW MAN</span></b></div><br />
<div style="text-align: center;">One must have a mind of winter<br />
To regard the frost and the boughs<br />
Of the pine-trees crusted with snow;<br />
<br />
And have been cold a long time<br />
To behold the junipers shagged with ice,<br />
The spruces rough in the distant glitter<br />
<br />
Of the January sun; and not to think<br />
Of any misery in the sound of the wind,<br />
In the sound of a few leaves,<br />
<br />
Which is the sound of the land<br />
Full of the same wind<br />
That is blowing in the same bare place<br />
<br />
For the listener, who listens in the snow,<br />
And, nothing himself, beholds<br />
Nothing that is not there and the nothing that is.<br />
<br />
</div>Ok, so shoot me, I was a Yalie English major.<br />
<br />
It is necessary to be able to distinguish between change and meaningful change. Most of the time, as the emotional trolly follows the numbers, hauling us up and plunging us down, the whiplash is uphelpful. But as I stand in the full cold snow of Wallace Stevens, staring at the numbers, I have to conclude that I'm staring at a moment that calls for action. Knowing when you need to change course must be coupled with the other survival skill in the battle against cancer: being clear about what other treatments are available and likely to work. Everything else is irrelevant. There are a limited number of treatments (a handful); if you earlier had become resistant to a given treatment, returning to it later probably won't work; and clinical trials can waste precious time, often don't provide a benefit, and, rarely, can do actual harm. They are, and should be, the medical equivalent of a Hail Mary pass in football.<br />
<div style="text-align: center;"></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">The battle becomes much simpler over time in that fewer treatments remain. At this point, all I have left is donor lymphocyte infusions (<a href="http://www.aetna.com/cpb/medical/data/600_699/0638.html">DLIs</a>) and <a href="http://en.wikipedia.org/wiki/Lenalidomide">lenalidomide</a> (because lenalidomide can fight the cancer without damaging my new immune system). But I became resistant to lenalidomide years ago, so why should I expect it to work today?</div><div style="text-align: left;"><br />
</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZi5zwUq3nLPzHGGUNmMfG_ZJBoyrvq_DI_PMobGgp3GUEawUlaDDMI-KMraGdEcXTO1CwqYKlmOJsHmdBPCJnquF1aDllozPaJNwE-4rTFqHTiUJQ_2YMAlCeAC_ZxoJzBOCqDxfXIRQ/s1600/graft_vs_host_disease_3_071128.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZi5zwUq3nLPzHGGUNmMfG_ZJBoyrvq_DI_PMobGgp3GUEawUlaDDMI-KMraGdEcXTO1CwqYKlmOJsHmdBPCJnquF1aDllozPaJNwE-4rTFqHTiUJQ_2YMAlCeAC_ZxoJzBOCqDxfXIRQ/s320/graft_vs_host_disease_3_071128.jpg" width="230" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">GVHD</td></tr>
</tbody></table><div style="text-align: left;">Donor lymphocyte infusions will probably work, perhaps even to the extent of complete remission. After a long period of fighting, immune systems sometimes do the equivalent of redefining normal: they give up the fight, which is what is happening inside me now. DLIs will reinvigorate the immune system to destroy the malignant cells. However, while ratcheting up the graft-versus-myeloma effect, they generally also considerably ratchet up the graft-versus-host disease, which, for me has been thus far quite manageable. Take a look at how bad <a href="http://www.google.com/search?tbm=isch&hl=en&source=hp&biw=1269&bih=718&q=gvhd&gbv=2&oq=gvhd&aq=f&aqi=g7g-m3&aql=&gs_sm=e&gs_upl=1855l2715l0l3167l4l4l0l0l0l0l203l587l0.3.1l4l0">GVHD</a> can get. Click on it for a really good look.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">GVHD can attack anything: eyes, mouth (one of my friends lost a few salivary glands), toe and finger nails, GI tract, connective tissue, you name it. After DLIs the GVHD is usually more than mild and can be life-threatening.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">The other downside is that steroids are the usual treatment for severe GVHD. If you've been following this blog, you know how easily steroids can drive me to the brink of insanity.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">So, that's where I have to go next. In early September, my doctor and I will discuss going back to my donor for another shot at cure. I think he wants to try lenalidomide first, but that will take a lot of convincing.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">The good news is that I won't have to endure once again the horror of last summer: four months in hospital; eighteen days in ICU; extreme weight loss; difficulty eating (even jello tasted vile); and life-threatening complications (I had pneumonia, kidney failure, deliria, heart irregularities, and a massive GI infection). I'd hate to have to repeat that experience. But, again, the DLIs are quite likely to work against the cancer, and, who knows, I might get lucky with respect to the GVHD. Yin and Yang, profit and loss, left and right, GVHD and GVM: no pain, no gain (or, as I say to my athletic friends, no pain, no brain).</div><div style="text-align: left;"><br />
</div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>THAT CENTER DIVIDER MOVED!</b></span><br />
Today I am $16,000 richer and immeasurably poorer, after State Farm totaled my beloved Mercedes SLK320. I am trying to be philosophical about losing a car that provided the most fun possible to have on four wheels (although teens would not like the absence of a back seat). In pristine condition, with but 59k miles on the odometer, this 2001 beauty could accelerate and corner as excitingly as any stock car ever made: the horsepower to weight ratio was enormous. On top of that, I loved that it could switch from a being hardtop to a roadster in 23 seconds at the push of a button: I could do it at a stoplight if the weather changed. The inside was all leather and burled walnut: even the steering wheel was made of gorgeous wood.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.nesseler.org/picts/vehicles/Mercedes/mercedes_side_view_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" height="300" src="http://www.nesseler.org/picts/vehicles/Mercedes/mercedes_side_view_1.jpg" width="400" /></a></div>I really don't know how I managed to destroy it. Was it a senior moment? My eyes have deteriorated considerably in the last decade, due to botched lasik in the right eye coupled with annoying floaters and a <a href="http://cms.revoptom.com/handbook/oct02_sec5_3.htm">posterior staphyloma</a>: maybe I didn't see the center divider because I couldn't see it in the shadows. I wasn't going fast, just normally accelerating from a stop light on an unfamiliar but complicated road, trying to make a turn. Wham! Oil on the ground. Au revoir, Mercedes.<br />
<blockquote><i>When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.</i></blockquote>With four children, what I actually need is a six-passenger car, like a Honda Odyssey, not the two-passenger babe magnet that I had. It's not what I <i>want</i>, it's what I <i>need</i>. Doesn't that suck! I hated wondering how, with the Dow Jones falling like a skydiver whose parachute didn't open, I was going to afford a down payment: now I have one. I could have tried to rescue the Mercedes from the boneyard, but it's time to do the mature thing. As a result, my inner teen is screaming.<br />
<br />
Fate has a sick sense of humor. After diagnosis, when I could no longer work and was surviving solely on private disability insurance, a man who owned an air ambulance company whacked me on my motorcycle in 2003, putting me in a wheel chair for eight months and making me $1.6M richer. I had wondered how I was going be financial secure before the cancer got me. Thanks, Fate—next time, let me win the Lotto instead! (I did salvage the motorcycle: it's in my garage needing a bit of work. The trouble is, I'm getting to be too old and too slow, and the neuropathy in me feet is so bad, that I can't ride it safely except around the block. Ratz!)<br />
<br />
Words of wisdom, the first from my Computer Science professor: "He who matures last, matures most." Well, I am today reaching heights of maturity that really and truly bite. Maturity is, after all, the consolation one receives from abandoning ones goals. But, more than that, aging coupled with the a prolonged fight against a deadly illness is marked by a succession of losses: work, which defines most men; youth, which spurs you to climb mountains and lane-split on motorcycles; the future becomes more confined and more restricted, giving the lie to Robert Browning's, "Grow old with me, the best is yet to be" nonsense; losing the sense that there's plenty of time left.<br />
<br />
[Pow!] [Bam!] [Wham!]<br />
<br />
Ok, after slapping myself around a bit, I am reminded about how lucky I truly am: a succession of near-miracles has made me happy despite what fate has rained down on me. First, I'm still here: isn't that amazing! Second, I am happily married to a beautiful woman half my age and, at long last, being the good father I couldn't be in my first marriage. Did I mention I'm adopting the children? Shazam, instant little citizens of the US of A! I haven't run out of ammunition in fighting the cancer. My mind is sound: recently I've memorized another Beethoven piano sonata, relearned the guitar (I was a folk singer long ago), and have written a good chunk of my book (which is turning out to be an autobiography). More than a year later I'm still weak, but I am lifting weights at the gym regularly. Ivonne and I are warm and successful.<br />
<br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>DESTITUTION IN SIGHT</b></span><br />
I'm well enough now to go back to work, and I need to: I have four teenagers who need braces and college educations! So I sent my résumé out into the world last month only to be greeted with a <i>resounding</i> silence. I'm practicing my technical skills ("Good morning, Walmart shopper!"). Maybe I can get an advance on my book (hahaha!).<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif2REyCRmAZmLtGrGGcYFnZEaKf5-HwIDDcO2F_ZVX_Hk8yV7C3l-AVPa6xlITk2EubZG7T4GQRFVBKN-qMobLNgnDRhJZe8m497CEAj9Tj83hRxEvTMWFfpHLekdEbxtwvMmPshduDxw/s1600/homeless.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" height="244" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif2REyCRmAZmLtGrGGcYFnZEaKf5-HwIDDcO2F_ZVX_Hk8yV7C3l-AVPa6xlITk2EubZG7T4GQRFVBKN-qMobLNgnDRhJZe8m497CEAj9Tj83hRxEvTMWFfpHLekdEbxtwvMmPshduDxw/s320/homeless.jpg" width="320" /></a></div>Rarely is the financial disaster of cancer discussed: I think this omission is a matter of masculine pride. With disability insurance, Medicare, a small pension from General Dynamics, and the motorcycle settlement, I didn't need to worry about money: statistically, I expected to be dead long before I ran out of it. Yet, here I am, thirteen years into the fight with no end in sight, with a young wife and four adorable kids. What happens to me and my family when my house, which still has some equity in it, goes under water, my mutual funds tank, and my credit is exhausted?<br />
<br />
I don't want talk about it. I don't want to even <i>think</i> about it. But ever looming in my mind is the distant specter of destitution: come visit me and my family under the I-5 viaduct at Mercy Road!<br />
<br />
Ok, enough of the maudlin BS. I've been lucky thus far: something will come along. Some major corporation will have the good sense to hire me, my book will be a resounding success, and the DLIs will cure the cancer once and for all. And, yet, I am haunted by these words, with which I am sure you are familiar:<br />
<br />
<br />
<h2 style="color: black; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 19px; font-weight: bold; font: normal normal bold 19px/27px 'Lucida Sans', 'Lucida Grande', Arial, Helvetica, sans-serif; line-height: 19px; margin-bottom: 4px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><div style="text-align: center;">Stopping by Woods on a Snowy Evening</div><span style="display: block; font: normal normal normal 14px/20px Georgia, 'Times New Roman', Times, serif; text-align: center;">By Robert Frost</span></h2><div class="poem-text" style="color: #333333; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; font: normal normal normal 14px/22px Georgia, 'Times New Roman', Times, serif; line-height: 19px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 27px; padding-left: 0px; padding-right: 0px; padding-top: 12px;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">Whose woods these are I think I know. </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">His house is in the village though; </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">He will not see me stopping here </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">To watch his woods fill up with snow. </div></div><div style="text-align: center;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">My little horse must think it queer </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">To stop without a farmhouse near </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">Between the woods and frozen lake </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">The darkest evening of the year. </div></div><div style="text-align: center;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">He gives his harness bells a shake </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">To ask if there is some mistake. </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">The only other sound’s the sweep </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">Of easy wind and downy flake. </div></div><div style="text-align: center;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">The woods are lovely, dark and deep. </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">But I have promises to keep, </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">And miles to go before I sleep, </div></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 1em; padding-right: 0px; padding-top: 0px; text-indent: -1em;"><div style="text-align: center;">And miles to go before I sleep.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK9597q2dRNxF-JVO5koCMdykd3h1MBgaaw_o7Rcat3jn0H-Gy9i5Z8UGxOY0G2lvFrii8XD1n271Li2dT5SFWz8wNMyrNxWxMl2nKluO0t-p042_LeFGQgxXRH9vnB0wMYiz_1yXOj-Y/s1600/Onehorse.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK9597q2dRNxF-JVO5koCMdykd3h1MBgaaw_o7Rcat3jn0H-Gy9i5Z8UGxOY0G2lvFrii8XD1n271Li2dT5SFWz8wNMyrNxWxMl2nKluO0t-p042_LeFGQgxXRH9vnB0wMYiz_1yXOj-Y/s400/Onehorse.jpg" width="400" /></a></div><br />
<br />
PS: My wife just told me that the Spanish translation of the title of this post reads: "Once more into the ass, dear friends, once more!"</div></div></div></div></div></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com3tag:blogger.com,1999:blog-8059395179650562655.post-87461090698257563462011-08-22T15:16:00.000-07:002011-08-25T13:46:57.232-07:00A Letter to my DonorContact between a marrow donor and the recipient is tightly controlled. At this point, though, I can write to my donor just so long as the letter contains absolutely nothing that can identify me. This I have done, and I'm sharing it with you now.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGrS5JvxZSH1AmkQRawM6xY-J7attRUF6fOehv7HnNJ9AjX612-MLOc3w85JNidmDyIRs5csHMAOrIije5ocZ-WwEZwD9FyM2DrlxBclWmxDJ1DS1jlS6Uc0rXfdwjPVMWCMI7WBmVYkQ/s1600/flowerstop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="80" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGrS5JvxZSH1AmkQRawM6xY-J7attRUF6fOehv7HnNJ9AjX612-MLOc3w85JNidmDyIRs5csHMAOrIije5ocZ-WwEZwD9FyM2DrlxBclWmxDJ1DS1jlS6Uc0rXfdwjPVMWCMI7WBmVYkQ/s320/flowerstop.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: Helvetica; font-size: 12px;">Monday, August 22, 2011</span></div><div class="separator" style="clear: both;"></div><div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span style="letter-spacing: 0px;"></span></div>My Dear Donor, <br />
<br />
I have hesitated to write to you because, no matter how hard I’ve tried, I can’t find adequate words to thank you for saving my life. You’ve given me the greatest gift one person can give another. A spontaneous rescue, such as a bystander giving CPR, is a wonderful act, but donating in the way you did is, to me, an even greater act of generosity: without immediate motivation, you decided that donating was something important for you to do, and you made a considerable effort to do it. You won’t be written up as a hero in the local newspaper, like the quick-thinking bystander might be: yet what you did was greater—a deep, pure and unselfish act of the highest goodness. <br />
<br />
I would not be alive today without you. Last year, I was nearing the end of a twelve-year battle against a generally incurable, universally fatal cancer. There was so much of it, there was no way I could have survived longer than a few months. Yet, here I am, more than a year later, looking great, weight-lifting at the gym, and making long-term plans. I wasn’t cured, but the cancer was dramatically reduced to a manageable level. <br />
<br />
It took a long time to find you: apparently, and surprisingly to me, there was something unusual about my blood that made you hard to find. When you were found, and volunteered, they had searched for months and I had reached the end of my rope. <br />
<br />
Of course, I didn’t want to die, but more than my survival was at stake: I’m married and raising four teenagers (three girls and a boy) who endlessly delight me. Although they are my step-children, I find myself loving them beyond all reason. One of my most unhappy recurring thoughts was imagining how much my death would have hurt them: they need a good father, and I’m trying my best to be one with some success. Thank you for making it possible for me to continue taking care of them. <br />
<br />
The transplant was difficult. I spent four months in hospital, including eighteen days in Intensive Care: I nearly died three times. I came out fifty-five pounds lighter (no fat, little muscle). Recovery took more than seven months. During my hospital stay, my wife was with me, night and day. She took care of me as much as any of the nurses, even sleeping in the second bed in my room. We are very close, and neither of us had ever before had such happiness in a relationship. We are in love: thank you for letting us continue enjoying each other. I hope some day that you and I will get to know each other, and that you might meet my wonderful family. <br />
<br />
I used to be of one blood type, but now that your blood flows through me, I have your blood. Since you moved in, my nails have gotten thicker, my hair, which had started to gray, reverted to my childhood light-brown with reddish highlights. You’ve renovated your new home, and I like the improvements. You’re a great roommate! <br />
<br />
With inexpressible gratitude, I sign myself, <br />
<br />
<b>Your Living and Loving Recipient</b><br />
<br />
<br />
Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com5tag:blogger.com,1999:blog-8059395179650562655.post-50464081189966031952011-07-16T15:45:00.000-07:002011-07-17T10:17:47.012-07:00A Matter of Perspective, and a Potpourri<div class="separator" style="clear: both; text-align: center;"></div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>TOPIC 1: PERSPECTIVE</b></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.nesseler.org/pages/mm/charts/6jul2011.htm" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdubawmbHkUKgatCPmCkiPVNEDlD2lvKCByNlwp6feYH1PDHru72MJND_W1FSZCyU6H1Aq0w5gSpnToDM8v6WFl2fORe8lWWEK1SHABAefcHQvdrtAbMtbsBqloIy1gxd7YKs8RYgSViE/s400/ScreenSnapz+7jul2011.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Click above for a bigger view</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: left;">So, thirteen months after my <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003009.htm">allogeneic transplant</a>, how am I doing? It all depends upon how you look at it. I update this chart whenever I get new labs: looking at the data in this way emphasizes historical trends; reveals the "big picture"; at times, it even offers a glimpse of the future. (Unfortunately, learning to use Microsoft Excel to produce these charts can be maddeningly difficult. It's worth the trouble, though, if only to garner the admiration of the many who have tried and failed.) The red line is the most important for me to watch because I have <a href="http://emedicine.medscape.com/article/202585-overview">light chain disease</a> of type "kappa": in my case, it's the only useful marker obtainable through ordinary lab tests. (The terms of light chain disease, kappa and lambda, sound offputtingly mathematical, but the first initials of the last names of their discoverers are—wait for it—"k" and "l".)</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">The chart begins one month after the transplant began and extends to last week. Normal, for kappa, is 1.94 mg/dL. My most recent measurement was 35.9: am I in trouble? </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhElOsH6y0_lw-F6sVb8OM0PcgPsLe5c_riooeUd6w0pHvtZ60ZUxCgsAfxFtHzGrirJkN5HvFON__CMPKLen8m89RDmBv1JWHli-3RFKDwWNG5E4u7LKhS5cqsqH8HTPiSUXOwPx-LudA/s1600/ScreenSnapz+7jul2011+kappa.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="248" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhElOsH6y0_lw-F6sVb8OM0PcgPsLe5c_riooeUd6w0pHvtZ60ZUxCgsAfxFtHzGrirJkN5HvFON__CMPKLen8m89RDmBv1JWHli-3RFKDwWNG5E4u7LKhS5cqsqH8HTPiSUXOwPx-LudA/s400/ScreenSnapz+7jul2011+kappa.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Long View</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: left;">Same data, but beginning two years ago. I've marked the day Ivonne and I married and the day my transplant began. For the record, the high point on the chart is 2140 mg/dL, a positively frightening number—it's amazing to me that I could have tolerated such a high tumor burden for as long as I did, and, because I had virtually no immune system, that I didn't die from an opportunistic infection. This longer-view chart is far more reassuring than the first one. From its perspective one can easily conclude that the variations seen in the first chart are, as engineers say, "in the noise": my condition has not significantly changed since the transplant. I am "stable." At the moment, I have nothing to worry about. Should this situation change—and it might never change—I still have options (<a href="http://en.wikipedia.org/wiki/Lenalidomide">lenalidomide</a>, which helps the immune system fight the cancer without being damaged by it; <a href="http://www.aetna.com/cpb/medical/data/600_699/0638.html">donor lymphocyte infusions</a>, which rev up the immune system's ability to attack).</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">This week, then, I sent out my first job-hunting feelers: one of my four teenagers needs braces; all four need to be sent to college; they eat their way through more than thirty eggs a week and countless gallons of milk; and don't even talk to me about iPads! They may have come from one of the poorest cities in Mexico (Tijuana), but, boy, did they ever pick up the technology in a hurry—dammit, niños, read a real book!</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: auto;">What's going through my mind? After a long session of pulling the <a href="http://www.imdb.com/title/tt0043265/combined">African Queen</a> through dense reeds, Bogart discovers that he’s covered with leeches, which he hates. Frantically, he and Hepburn use salt to remove them. Then comes one of the poignant moments in cinema: he realizes that despite his disgust he must go back into the water if they are to survive. Tellingly, Hepburn looks at him with a heavy heart but does not protest: she's no fool.</div><div class="separator" style="clear: both; text-align: auto;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ2rfyzJmzbzl5veAB8Ts8c26HekxTCAnRaLwj66p93iXCs5amdlfU9KPD1NQ4ydNNHIVL10_8ZnOC19236fbA-x1fnPzF9yvt3L6nCtfMWZQcM39JbBoKgnyuso45v5E6vifu-Q2iALQ/s1600/africanqueen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ2rfyzJmzbzl5veAB8Ts8c26HekxTCAnRaLwj66p93iXCs5amdlfU9KPD1NQ4ydNNHIVL10_8ZnOC19236fbA-x1fnPzF9yvt3L6nCtfMWZQcM39JbBoKgnyuso45v5E6vifu-Q2iALQ/s400/africanqueen.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: auto;"><br />
</div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>TOPIC 2: HAT TIP</b></span></div><div class="separator" style="clear: both; text-align: left;">Hat tip to Dr. Rahul Naik for deciding to go into myeloma research! He's working on a way to make Velcade (<a href="http://en.wikipedia.org/wiki/Bortezomib">bortezomib</a>) more effective.</div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span></div><div class="separator" style="clear: both; text-align: left;"><b><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">TOPIC 3: FAMILY ADVENTURES</span></b></div><div class="separator" style="clear: both; text-align: left;">The whole family went to the Zoo last week. You might enjoy this picture of us. I really need to buy shirts that fit!</div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzCBT_q8CnGrlLCCfNu0PSruPjOPH03oFW-X3hSXQppCGOUW6mYfkK4uTphWQAEj53XXNyB6ALiFK4wGuKGUi4nwaeC2NLImU3S_v_QIWmZ3wckGag3OGIXzixLuFrp4m2jdByreThZHw/s1600/FamilyAtTheZoo.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzCBT_q8CnGrlLCCfNu0PSruPjOPH03oFW-X3hSXQppCGOUW6mYfkK4uTphWQAEj53XXNyB6ALiFK4wGuKGUi4nwaeC2NLImU3S_v_QIWmZ3wckGag3OGIXzixLuFrp4m2jdByreThZHw/s400/FamilyAtTheZoo.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nahomy, Jared, me, Ivonne, Sharon, and Ruben</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: inherit;">Sharon and Ruben are spending a few days with their friends in Mexico. Jared decided to stay home, telling her mother, "I'll stay home because my role in the family is to make Lonnie's life miserable." She teases me constantly: she really is adorable.</span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>TOPIC 4: THE BIRDS (THINK HITCHCOCK)</b></span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: inherit;">The bird feeder was up only one week before the scrub jays found it! They may be bullies, but they are fun to watch. Also, the first raptors have appeared: a peregrine falcon was spotted by my children eating one of the birds I've been feeding. My cat routinely splats herself against the glass door by the feeder trying to catch one—in pig latin, she's <i>otnay ootay ightbray</i>. My feathered friends are going through twenty-five pounds of black oil sunflower seeds a week. They make me smile.</span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: inherit;"><br />
</span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>TOPIC 5: FOURTH OF JULY MUSING (BELATED)</b></span></div><div class="separator" style="clear: both; text-align: left;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b><br />
</b></span></div><div class="separator" style="clear: both; text-align: left;"></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: red; font-family: Arial; font-size: medium;"><strong><i>The New Colossus</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: red; font-family: Arial; font-size: medium;"><strong><i><br />
</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Not like the brazen giant of Greek fame,</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>With conquering limbs astride from land to land;</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Here at our sea-washed, sunset gates shall stand</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>A mighty woman with a torch, whose flame</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Is the imprisoned lightning, and her name</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Mother of Exiles. From her beacon-hand</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Glows world-wide welcome; her mild eyes command</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>The air-bridged harbor that twin cities frame.</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>"Keep ancient lands, your storied pomp!" cries she</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>With silent lips. "Give me your tired, your poor,</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Your huddled masses yearning to breathe free,</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>The wretched refuse of your teeming shore.</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>Send these, the homeless, tempest-tost to me,</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>I lift my lamp beside the golden door!"</i></strong></span></div></div><div align="center" style="border-collapse: collapse;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i>— Emma Lazarus</i></strong></span></div></div><div style="border-collapse: collapse; text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span style="color: black; font-family: Arial; font-size: medium;"><strong><i><br />
</i></strong></span></div></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgBlnuY__VV3H0UbhD6EgpPzNMFD3rr5J536tlMX4G8pe88qG45Han7vcwDB9wvXMY60KeZWmOkbqWubkmJ93CPDsjWZrBQqVzhBnmqyH0f7K-Y-26lB7d6aZIb-8ru8gluJej2uD_4C8/s1600/liberty.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgBlnuY__VV3H0UbhD6EgpPzNMFD3rr5J536tlMX4G8pe88qG45Han7vcwDB9wvXMY60KeZWmOkbqWubkmJ93CPDsjWZrBQqVzhBnmqyH0f7K-Y-26lB7d6aZIb-8ru8gluJej2uD_4C8/s200/liberty.jpg" width="150" /></a></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">These words, our sacred, national words, have graced the Statue of Liberty since October 28, 1886. This Fourth of July I couldn't help but admire those who so long ago held this vision of America. Many cite these words to make the case for American exceptionalism. Some say the idea that we are a welcoming, big-hearted people has always been a myth, but I don't believe that despite recent events. We have always been the most diverse of nations, and this diversity has blessed us with unparalleled strength and resilience. In time the new immigrants will be absorbed, as earlier waves of immigrants have been absorbed, and we will be even stronger because of it.<br />
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<b><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">TOPIC 6: MUSCLES!</span></b><br />
Or, rather, the lack thereof. As I've mentioned before, I lost 55lbs of muscle and fat during the allo. When I finally came home I had little of either. That's not an exaggeration. There wasn't much I could do for myself: I couldn't put on my clothes, take a shower without risking my life, go to the bathroom, or move from my bed to a chair. I couldn't put on my shoes. I couldn't roll over on my stomach. After the allo I had nothing—except my life.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilebNgIE4MFqoXcpNtRj0uD3clQaA52Mw_GutZ_gWWDH7xwnBohoP8uG2n7gm8IAmP-YCtdTAejXQgt7tXYCBrgfIG3fxTBAm1xCCHSCoSxGaIQZQiJuHRma3gf8D16sWnyCn73I48vUI/s1600/chestmuscles.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilebNgIE4MFqoXcpNtRj0uD3clQaA52Mw_GutZ_gWWDH7xwnBohoP8uG2n7gm8IAmP-YCtdTAejXQgt7tXYCBrgfIG3fxTBAm1xCCHSCoSxGaIQZQiJuHRma3gf8D16sWnyCn73I48vUI/s200/chestmuscles.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Don't I Wish....</td></tr>
</tbody></table>Now I'm hitting the gym three times a week, and, after the first time, going by myself. I'm doing what an experienced lifter does, but with almost no weight. Yet I'm getting stronger and feeling better (I prefer weight lifting to psychotherapy: unless you're terribly neurotic it works faster). My greatest disability is the lack of strength in my legs; however, I can notice an improvement already. I very much hope I don't hurt myself. I avoid any exercise that compresses my spine, but if I use my damned head I can work most of the other exercise machines. I can't warm up with the rowing machine, though: I'm afraid if I get down that low I won't be able to get back up without help.</div><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>TOPIC 7: BIG HAT TIP</b></span><br />
I am alive today because of the determined efforts of <a href="http://www.scripps.org/physicians/922">Dr. James Mason</a> of Scripps Clinic. The allo was his idea. There were numerous complications in addition to the medical ones, many of them administrative, many involving insurance, all of which he handled adroitly. Recently he became Chief of Staff. He well deserves it. Many of my other doctors have been absolutely first-rate—<a href="http://www.healthgrades.com/physician/dr-joel-bernstein-28g62/">Dr. Joel Bernstein</a> has taken excellent care of me for thirteen years—but, in the end, I continue to breathe because of Mason.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmFPdnreWpTDUiCQxL_Uel3zvW-T2PWxT5B6jkRrc4zkEW33zR1YJj0cVViyd5f9NVUGIB05Y58CyQA3VtFnK9y-4zwjTPYu4_SYp87ACJDDqxjMNxfa1WPXWJmnLS3OnOoob2rf83x64/s1600/mason_james_168x252.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmFPdnreWpTDUiCQxL_Uel3zvW-T2PWxT5B6jkRrc4zkEW33zR1YJj0cVViyd5f9NVUGIB05Y58CyQA3VtFnK9y-4zwjTPYu4_SYp87ACJDDqxjMNxfa1WPXWJmnLS3OnOoob2rf83x64/s1600/mason_james_168x252.jpg" /></a></div>I've been the undeserved beneficiary of many miracles, most of which I've chronicled here; but the biggest factor in my survival might very well be the chance consultation with Dr. Mason years ago. He taught me about my disease and its treatment: he did not have to do this, but for years he made time to answer all of my questions —and, as I am sure he would attest, I usually had a boatload of questions. He is the only person who has ever made me regret not considering a career in medicine.<br />
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I am proud to call Jim my friend as well.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com9tag:blogger.com,1999:blog-8059395179650562655.post-72968535449801272672011-05-31T12:35:00.000-07:002011-05-31T12:35:47.552-07:00Birds!<div style="text-align: left;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-bottom: 0.5em; margin-left: auto; margin-right: auto; padding-bottom: 6px; padding-left: 6px; padding-right: 6px; padding-top: 6px; text-align: center;"><tbody>
<tr><td style="text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1EIvoFZIhjWm-NT9fgHVCtSK3A0vxvmK6Hx_q75ArUeqNDZo3BvkvdcNyZQY9kbEfxnqbfdRJqYG9OSQtjnDSVrkeQxZZqYRViIjdK5BX9R7EQAS4kuCMAy-dko0Q3bKmJpM0FwC9TTA/s1600/WesternScrubJay2LR.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1EIvoFZIhjWm-NT9fgHVCtSK3A0vxvmK6Hx_q75ArUeqNDZo3BvkvdcNyZQY9kbEfxnqbfdRJqYG9OSQtjnDSVrkeQxZZqYRViIjdK5BX9R7EQAS4kuCMAy-dko0Q3bKmJpM0FwC9TTA/s400/WesternScrubJay2LR.jpg" style="cursor: move;" width="400" /></a></div></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; padding-top: 4px; text-align: center;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-size: 13px;">The Western Scrub Jay</span></span></span></div></td></tr>
</tbody></table><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">This weekend, after a five-year hiatus, I restored one of my backyard bird feeders. San Diego can't support an abundance of birds naturally: it's near-desertic (in rain, not in temperature), so food is scarce. Because I am insanely in love with all birds, as you know, for years I fed them with three giant seed feeders, suet, and red syrup for the hummers. Because I fed them what they truly like, black oil sunflower seeds, they didn't just stop by for a visit, they moved in. The population built up, starting with sparrows and finches, then with larger birds like the fun-to-watch bullies of the back yard, scrub jays. Over time, a full avian ecology was going in my back yard. Generations of jays and others would nest around my house. Eventually, the raptors arrived. It was not at all unusual to spot peregrine falcons eying my back yard as if it were a restaurant while red-tailed hawks swooped in for lunch. Every January or February, mallards still swim in my little pond for a few weeks, their hind ends and feet pointing high in the air with the rest of them nibbling under water. I've seen no ducklings yet, but I keep hoping. Once in a while, a fleet of crows sweeps in like fighter jets, screaming and fighting and chasing all the other birds away. I loved it.</div></div><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPAhIzMdQyC18YM_l_NGwVf_8uhkcJfKz1TwGAGlFkOFWMrRrS3dXe9qMy_HkhOq9JEumG8uoeT74LLMcH4gXJmy73KwdkKBmoCHzg5bwc41mLmGZzuiUAsccVza4NoFEi17OYwGUA2Mk/s1600/Norway+Rat.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPAhIzMdQyC18YM_l_NGwVf_8uhkcJfKz1TwGAGlFkOFWMrRrS3dXe9qMy_HkhOq9JEumG8uoeT74LLMcH4gXJmy73KwdkKBmoCHzg5bwc41mLmGZzuiUAsccVza4NoFEi17OYwGUA2Mk/s200/Norway+Rat.jpg" width="167" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A Norway Rat</td></tr>
</tbody></table><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">But then there was the autologous transplant in 2005, which for a while left me too weak to feed them myself. Also, what birds like to eat, so do the rats (all part of the ecology, alas). Although I had rat preventers on the lower-floor feeders, birds are so messy that much of their food ends up on the ground. Hence the rats. It became so bad that if, about an hour before sunset, I shook the large ficus benjamina by my back door, a half-dozen rats would jump onto the ground and scurry away. In time, they found a way to nest in my attic, which, although large, is a chore for me to get into. Countless times I had to carry a big ladder up the stairs, dislodge the ceiling door, and set the traps with a combination of bacon and peanut butter (after removing the dead rats, of course). <i>Ewww!</i></div></div><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div></div><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">So I stopped the feedings, and, in a couple of years, my back yard reverted to its original state (i.e., few birds, all small, no rats).</div></div><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div></div><div style="text-align: left;"><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">This weekend, though, I couldn't stand it any longer: I needed birds! The sliding doors of my upstairs bedroom open onto a small deck which is seldom used (well, it <i>is</i> fun to put a telescope up there and watch the neighbors hurriedly close their blinds). Today, the first full day of good weather, the birds found the feeder. At the moment there are twelve of them split evenly between the feeder itself and the deck beneath it. Just sparrows and finches so far, but the crowd is building. I'll let you know when the first jay arrives, and when the first hawk decides to eat him.</div></div></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com4tag:blogger.com,1999:blog-8059395179650562655.post-9473410931249034542011-05-08T16:05:00.000-07:002011-06-04T08:48:26.938-07:00Rosebud<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsHB4AwfggmjsSiHV-CFwl0LgBDcSSu706KLuJoHYQvSOrvlFyR2lPW30S5BJPDYAFUqvUQHRKee2NMkTzPi7P4jdl-nRjKwamg6nyTrwUl2Ag3oe9SkEx1bS6mO8kbWBPths-Z3Aaa9I/s1600/rosebud+horizontal.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsHB4AwfggmjsSiHV-CFwl0LgBDcSSu706KLuJoHYQvSOrvlFyR2lPW30S5BJPDYAFUqvUQHRKee2NMkTzPi7P4jdl-nRjKwamg6nyTrwUl2Ag3oe9SkEx1bS6mO8kbWBPths-Z3Aaa9I/s400/rosebud+horizontal.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hatched May 1985, died November 3, 2008</td></tr>
</tbody></table>Rosebud was my constant companion for twenty-three years. Where I was, he was. Rosie, in this picture, is on a cast-iron perch at the foot of my bed. The perch had to be made of cast iron because Rosebud was so heavy — there were nearly five pounds of him. He flew more or less like a bowling ball, although, when he flapped as hard as he could, there was a small gale in the house. He was more than a yard in length. One of his tail feathers, which I've kept, is more than two feet long. His talons were so large they wrapped around my wrists.<br />
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Rosebud was a Ruby <a href="http://en.wikipedia.org/wiki/Macaw">macaw</a>, a rare cross between a Scarlet and a Greenwing. They don't cross in the wild although there are places where they flock together. There are only a handful in the world.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghAXAI7mgjk6_uQCH8Y7gRMSINwq3h7wCA_eI1lpwen0A1xZs19NtrXQ5TWatkb8vJklgbaDK-VYTyDSfSaSsIoa4DzSbe8z1RuYBC802r8PzmG0GwEeKQ5VMADT2TLWevHjv66TjNT2Q/s1600/RosieHead.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghAXAI7mgjk6_uQCH8Y7gRMSINwq3h7wCA_eI1lpwen0A1xZs19NtrXQ5TWatkb8vJklgbaDK-VYTyDSfSaSsIoa4DzSbe8z1RuYBC802r8PzmG0GwEeKQ5VMADT2TLWevHjv66TjNT2Q/s320/RosieHead.jpg" width="320" /></a></div>He inherited the best features of both breeds. His cheeks were feathered, like a Greenwing. He had the bright yellow of a Scarlet. His red was greenwing deep, not like the washed-out tomato red of a Scarlet. Despite his great size, he was of gentle disposition, unlike the usual Scarlet, although he had strong likes and dislikes when it came to people. If you were one of the few people on his hate list, it was wise to keep your head away from him — one of my housekeepers had to have stitches in her ears twice. Very few creatures were on his bad side, but if they were, it was permanent.<br />
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He was subject to deep passions. In particular, he fell insanely and instantly in love with every black woman he ever saw. He was particularly enamored of one of my former housekeepers, also named Rose. When she would walk into the room he would practically fall off his perch, then would do whatever he could to attract her attention — scream, violently ring a bell that hung from his ring stand, flap his wings, say "hello" at the top of his voice (which, by the way, could be heard for miles if he decided to go all in). After getting on her arm, he would happily stay there for the rest of the day were she to allow it. He was completely heterosexual. He loved me, but I was Daddy, and that's different.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirp0MGNLC7o6yq4ur-CHtw-3AwPUMR-1-_J8soShBnPawSV3H3yRBPxsYMyDqjy-M9OM5Yk4uW6imDmHH4nvbO81PaLcJYfHpaJMZ1EZbltg2UBVAY4JBnQEajPgLezUB9LcxK1UWL_fs/s1600/Rosie%2526Rosie.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirp0MGNLC7o6yq4ur-CHtw-3AwPUMR-1-_J8soShBnPawSV3H3yRBPxsYMyDqjy-M9OM5Yk4uW6imDmHH4nvbO81PaLcJYfHpaJMZ1EZbltg2UBVAY4JBnQEajPgLezUB9LcxK1UWL_fs/s320/Rosie%2526Rosie.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rosie and Rosie</td></tr>
</tbody></table>Other parrots mimic the voices they hear, by the way, but macaws are different — they have their own voices. Rosebud's voice was deep, as you might expect from one so large. He wasn't a great talker, but when he did talk he was amusing. I liked to occasionally blow his mind by taking him somewhere, like a hardware store. If he saw something that frightened him, he would babble softly like a baby in a stream of indecipherable words.<br />
<br />
Rosebud was a hand-fed baby. Incubated, when he was hatched he was raised by humans as a human, fed with such foods as Gerber's baby food with a special spoon and plastic eyedroppers. (He loved cereal all his life.) I still have the spoon. Just like a human baby, he had to be fed every few hours around the clock. When I got him he was weaned to solid foods but still needed to be spoon fed for a few weeks. That's how I became Daddy. Such birds make wonderful pets because they have no fear of humans. In fact, in their birdly minds, they <i>are</i> humans. I'm sure he thought my plumage was ugly.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwR8Ej8J2j421nKP_rOmviA8orVYbNNMuBdyFADUJsT_2-qX3OLU2909YCmlD-R8jtv2rUphuXtc1uStFTzwe8nPMVpC9BdCJM1VexI_VBu5igcLFjvl0eESbcMaNZJ36kxkNUsmYu5hQ/s1600/spoon-syringe.gif" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwR8Ej8J2j421nKP_rOmviA8orVYbNNMuBdyFADUJsT_2-qX3OLU2909YCmlD-R8jtv2rUphuXtc1uStFTzwe8nPMVpC9BdCJM1VexI_VBu5igcLFjvl0eESbcMaNZJ36kxkNUsmYu5hQ/s1600/spoon-syringe.gif" /></a></div>I had no intention of buying a bird at the <a href="http://ourfeatheredfriends.com/">bird store</a> — I was buying food for another bird (a pain-in-the-ass wild macaw that I tamed who was named Merlin). When I first saw Rosebud he was covered in pin feathers, like a miniature porcupine, with practically no tail. The owner was handling him. After the Devil whispered in my ear, I asked the owner, may I hold him? In a trice Rosebud was on my forearm. I thought to myself, wow, he is everything I've ever wanted in a macaw. (I've adored macaws above all other birds — and I love every bird on this planet — ever since I was a little boy and saw my first macaw at <a href="http://www.jungleisland.com/index.php">Parrot Jungle</a> in Miami.) So what did he do? He tightened up his claws on my sweater, leaned against my chest, and fell asleep. Adorable. I tried to get out of that store without buying him but I couldn't do it, nor he wouldn't let go of me. He was so cute! In a way, he bought me as much as I bought him. So about $2,500 later, not counting a monster cage, perches and stands, and horse-like quantities of food, I had the bird of my dreams.<br />
<br />
I loved to take him places, in part because his mind needed periodic blowing and in part because the reactions of other people to seeing him were always delightful. Adults often would try to pretend that there was nothing strange about seeing a man with a gigantic, gaudy bird on his shoulder in a store, but kids had no such reservations. They would run up to me and immediately start peppering me with questions. What is that on your shoulder? Does he have a name? Does he talk? Can I touch him? Does he bite? To that last question, I would always respond with an enthusiastic, "Yes! He especially likes to bite off the fingers of little children!" Not that he would, of course. If upset enough, though, he could bite through a broomstick. His head and jaws were massive.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-S1UL4tf2mlPrHHZL7VkHzB8gTIihfD4rBgvjOY3XUoLmTb_29TgwimIfgDGyHKoBpel6o6XEfCLahB4ifXX71yRrthWFCZ97zmUeoubwf78thgpF9LgfCckW4gr5tYFmAqE6Gp816o/s1600/RosieFeet.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-S1UL4tf2mlPrHHZL7VkHzB8gTIihfD4rBgvjOY3XUoLmTb_29TgwimIfgDGyHKoBpel6o6XEfCLahB4ifXX71yRrthWFCZ97zmUeoubwf78thgpF9LgfCckW4gr5tYFmAqE6Gp816o/s320/RosieFeet.jpg" width="320" /></a></div>One day, my friend Kent and I took him to a dump that served a tolerably good beef sandwich. At the register, the buxom cashier saw Rosebud, then said, "You can't bring him in here!" I replied, matter-of-factly, "He's a seeing-eye bird." No further questions. Rosie sat with us on a chair back and ate bits of sandwich and fries. Rosebud especially liked Kentucky Fried Chicken. He'd sit on a chair back gnawing on a chicken leg grasped tightly in his talons, completely ignoring everything else. That was his way of protecting himself in an unfamiliar environment — acting for all the world as if it didn't exist and he was at home, on his perch. By the way, he was expert at cracking large bones open and scooping out the marrow.<br />
<br />
But he was more than amusing, in a sense. Do you remember the old movie, <i><a href="http://www.imdb.com/title/tt0042546/combined">Harvey</a></i>? In it, Jimmie Stewart had an invisible giant rabbit friend, a <a href="http://en.wikipedia.org/wiki/P%C3%BAca">pooka</a>, that went with him everywhere. In one scene, in a bar, he explained how people in bars react to Harvey. What he said was equally true about Rosebud:<br />
<blockquote>"They [the men in bars] tell about the big terrible things they've done and the big wonderful things they'll do. Their hopes, and their regrets, and their loves, and their hates. All very large, because nobody ever brings anything small into a bar. And then I introduce them to Harvey...and he's bigger and grander than anything they offer me. And when they leave, they leave impressed. The same people seldom come back; but that's envy, my dear. There's a little bit of envy in the best of us."</blockquote><div style="text-align: center;">— Elwood P. Dowd (Jimmie Stewart), <i>Harvey</i></div><br />
So it was with Rosebud. Seeing him caused most folks come out of themselves for a few moments to appreciate him with a degree of wonder and awe. I don't claim that seeing him was life changing for everyone, but it certainly was for me.<br />
<br />
One thing I liked about owning these magnificent birds was that they were likely to outlive me, having a possible lifespan of seventy or more years, although I felt guilty about feeling this way. While I wouldn't have to suffer the bereavement of losing Rosebud — he was, after all, like a son to me — he would be devastated by my death. To give you an example, one lady I know had to give up her bird due to unfortunate circumstances. She gave it to a new, loving home. One day, after visiting her bird at its new home, she had to leave. When she was in the driveway half-way to her car, the bird, who had never before said anything like this, yelled after her in a desperate tone: "I'm sorry!" These intelligent, passionate birds will break your heart.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_K7QkucOk_V5v7spVKOJSl5BuXM5S7IaHjIYnCss8mEzgiFm6HNsEYaW1RqqkQRvK87MRnnyRX4T7ZILqKAsxTwaaWc-Ir-VtlyjrOwFtQipYejSXxrJIuIPKKcP0kBXUqjiviZeyW8o/s1600/peekaboo.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_K7QkucOk_V5v7spVKOJSl5BuXM5S7IaHjIYnCss8mEzgiFm6HNsEYaW1RqqkQRvK87MRnnyRX4T7ZILqKAsxTwaaWc-Ir-VtlyjrOwFtQipYejSXxrJIuIPKKcP0kBXUqjiviZeyW8o/s320/peekaboo.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A Scarlet, Sahara, playing peekaboo</td></tr>
</tbody></table>And so it was with Rosebud. There was something a little odd that Monday morning. He wasn't paying much attention to his deep love, my housekeeper Rosie. He looked fine. After an hour or so I picked him up, wondering how he was. That's when I heard a gurgling sound during his breathing. It took me too long to panic, but, then, panic I did. I was racing with him out the door to the vet when he bit the holy hell out of my hand, fell to the front porch, and died in less than a minute, died in the most horrible way I could have possibly imagined, drowning in his own blood. All the way to the vet I tried to resuscitate him, but I knew there was no hope. A blood vessel had ruptured and had slowly leaked into his lungs.<br />
<br />
I believe that there was nothing that could have been done for him even if I had caught on to his distress earlier (birds, when ill, hide it as a protective mechanism — they don't want others to see their vulnerability). Even had this happened in the arms of my dear bird vet, <a href="http://www.drexotic.com/about/jeffrey-r-jenkins-d-v-m/">Jeff</a>, there was nothing that could have been done. I passionately believe that. And I'll tell you why. Because the alternative is <i>unthinkable</i>.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijpikeEm3RlmTZfgUGbxefbGP8_aZhfftwHBJ2bPS6oecP6_POV1bLEh2JNbj75iiQcjrfl3ZKTs-8bZUo-XiWUNKDQUPibiub0R_DAhW2kGvWPIcd9DUQYpaXndMppSzWypGeoUaefUw/s1600/walnut.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijpikeEm3RlmTZfgUGbxefbGP8_aZhfftwHBJ2bPS6oecP6_POV1bLEh2JNbj75iiQcjrfl3ZKTs-8bZUo-XiWUNKDQUPibiub0R_DAhW2kGvWPIcd9DUQYpaXndMppSzWypGeoUaefUw/s200/walnut.jpg" width="131" /></a></div>I made a casket for him some forty inches long out of six-inch heavy plastic pipe capped at both ends in order to be both air and water tight. Inside I put the bell he rang so often when he wanted attention, some of his other toys, a brief note from me, and a walnut. Every night of his life, at bed time, I gave him a walnut. One time I nearly ran out of them in winter and had to air-freight them from South America. After devouring it, he would climb to the top-most perch of his gigantic cage and go to sleep. There <i>had</i> to be a walnut in his casket.<br />
<br />
I wrapped him in linen. He required a lot of linen. Rosie, my housekeeper and big-hearted friend, helped prepare him. In what might be considered heresy by some, I put on my full religious clothing — <a href="http://en.wikipedia.org/wiki/Talit">tallit</a> and <a href="http://en.wikipedia.org/wiki/Yarmulke">yarmulke</a>, and said <a href="http://en.wikipedia.org/wiki/Kaddish">Kaddish</a> over him.<br />
<br />
Still, I could not bear to put him in the ground. I kept him on the floor of my dining room for about a year. He was still home, you see. His cages and perches were right where he had left them, as if, in my lunacy and grief, he might be coming back.<br />
<br />
On top of that, his death was so horrible to see, he suffered so much, that I had a full-blown attack of post-traumatic stress disorder (<a href="http://en.wikipedia.org/wiki/Ptsd">PTSD</a>) that lasted for about five months. PTSD is nothing like grief. PTSD is a high-definition DVD playing — I can't even say "in my mind" because it is more than that. It is a complete reliving of the event, like the most realistic dream possible to have, over and over and over. There was no controlling it. It tore me apart.<br />
<br />
After a few months, I realized that to stop the recording, I had to describe what happened to someone else. Completely. Especially, I had to describe the last ten seconds of it. I tried and tried but couldn't do it. I would occasionally get farther in my attempts, but always stopped short of those last seconds. When I finally was able to get to the end, the PTSD was over.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvV_ERe5-il9PIaJTp0GRcL4g4gLvKhTQBRo3ALPM4Xz2zm4YwdQBQWdal5TP_YhqPP7u6oapQ941E1m4nRYHdTsDUNExpm2VYNsL_AU7g1uYBHp7S_5Fo8YLiZ_1pJAM0Q1C4LEY2CVs/s1600/Rosbud+Grave.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvV_ERe5-il9PIaJTp0GRcL4g4gLvKhTQBRo3ALPM4Xz2zm4YwdQBQWdal5TP_YhqPP7u6oapQ941E1m4nRYHdTsDUNExpm2VYNsL_AU7g1uYBHp7S_5Fo8YLiZ_1pJAM0Q1C4LEY2CVs/s320/Rosbud+Grave.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rosebud is buried beside the big tree on the left</td></tr>
</tbody></table>Last year my friend Kent, who is a genuinely good man, helped me bury him on the hillside behind my house. I couldn't do much to help, actually. Mostly, I just sat there. Kent, in his wisdom and kindness, forced me to talk about Rosebud although I didn't want to do it, and talking about him helped me. Rosebud was finally put to rest. Because it was the rainy season, I asked Kent to put some large rocks just below Rosebud's grave so the rains wouldn't uncover him. Now they can be removed. By local law, nothing can be done with the area where he's buried. I know he'll be undisturbed. That comforts me. I wish someone would buy the old cages and perches, but I've had no luck. Now that my house is filled with teenager, we need the room. Perhaps I'll have to donate them to a charity.<br />
<br />
No, I don't think I'll be buying another bird. Rosebud was an act no other bird could possibly follow. I would be constantly comparing any new bird to Rosebud. No new bird could possibly measure up. Besides, in the last two years, I've lost two other pets I deeply loved, one of which, <a href="http://nesseler-medical.blogspot.com/2009/11/yeti-and-me.html">Yeti</a>, I told you about. I can't stand the thought of losing another. I have to confess that when my own brother died last year, my grief was nowhere near as profound as it was after Rosebud died.<br />
<br />
Besides, Rosebud, deep in my psyche, took the place of the son who abandoned me years ago. The great love I had for my son went to Rosebud who stood in for him. I don't want to do that again. It's crazy. Sanity requires that loss be accepted. Now, with this post about the death of Rosebud, perhaps I can finally accept the loss of my son, too.<br />
<br />
My thinking about keeping these wonderful creatures has changed. I don't think keeping them is such a good idea. Although I declined to have Rosebud necropsied, I know that his diet was full of fat and other human garbage food, and, most importantly, there was no way he could have gotten the strenuous exercise his system was built for: after all, a macaw in the wild would be flying most of the day. Without their natural diet and exercise, they suffer from the same kind of sedentary diseases we do — high blood pressure, diabetes, you name it. There's no way to keep them inside and at the same time keep them healthy. Even if you build a huge flight cage in the back yard, so they can fly as much as they need to, they tend to revert to wild behavior. Either way, you lose them.<br />
<br />
There is a flock of wild macaws over Point Loma, right here in San Diego. You can hear them coming for miles, screaming as they fly. Speaking fluent macaw, as I do, I called out to them as Rosebud might have done as they flew high overhead. Damned if they didn't change course, circle, and land on a tree just over my head in order to see the strange man who could speak macaw. The Navy, on whose property they live, has put gigantic garbage cans up in the trees for the macaws to use for nesting. I love the Navy for doing that. If you're ever in San Diego, do try to see them, especially in flight.<br />
<br />
It was my very great privilege to have fostered Rosebud for twenty-three years. I want to thank you all for allowing me to share him with you.<br />
<br />
Goodbye, Rosebud.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQbCxjaSaNCG9wHkF64b4jnfwZWrNg4SR4LrMfv5AeChjvfob2g56FaF9e1t52r5yB1FAGT-rd1aItHMk6rhPzsb5IJdKNP3KA7SwT5CoJuAAtiETv0i2uQ3ORsYXY2rxL8Dc9xgsTmtU/s1600/Greenwings+in+Bolivia.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="260" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQbCxjaSaNCG9wHkF64b4jnfwZWrNg4SR4LrMfv5AeChjvfob2g56FaF9e1t52r5yB1FAGT-rd1aItHMk6rhPzsb5IJdKNP3KA7SwT5CoJuAAtiETv0i2uQ3ORsYXY2rxL8Dc9xgsTmtU/s400/Greenwings+in+Bolivia.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Greenwings in Bolivia</td></tr>
</tbody></table>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com6tag:blogger.com,1999:blog-8059395179650562655.post-53865975474492602722011-04-30T13:37:00.000-07:002011-05-06T07:24:26.449-07:00The Urge to Paint My Nails<div style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie2n52iZKdSTW6u976dEA9mML9P1_huv_Q1Uo0UQNwx3WsNP1-EEovF0bFSBNxLIeTXZtMA64G0XQoJEtfVUpzBFGbC1mvJeyNmM97-t4lXbKBT1JTpHn4DU6HCvDRJecHRTdTLnx_7c0/s1600/Girl-Question-Mark.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie2n52iZKdSTW6u976dEA9mML9P1_huv_Q1Uo0UQNwx3WsNP1-EEovF0bFSBNxLIeTXZtMA64G0XQoJEtfVUpzBFGbC1mvJeyNmM97-t4lXbKBT1JTpHn4DU6HCvDRJecHRTdTLnx_7c0/s320/Girl-Question-Mark.jpg" width="244" /></a></div>Yesterday I learned that my donor is a young woman, twenty-four years of age. At this point there's nothing more that I may know about her. Perhaps, in a month, the <a href="http://www.marrow.org/index.html">National Marrow Donor Program</a>, which arranges everything about my kind of transplant, may decide to tell recipients the general location of the donor (e.g., Australia). At the one-year point (for me, June 11th) we are allowed to correspond. I understand that I may send a letter to her that will be forwarded by the NMDP. She may or may not decide to respond. I hope she does.<br />
<br />
I hope she does because nothing that has ever happened to me has been so subtly profound has having another person's blood coursing through my veins, touching every tissue in my body. Like a girlfriend, she moved in with me last summer and straightaway went about renovating my bachelor quarters. I've noticed that my fingernails are growing more slowly now, are slightly thicker, and generally smoother. My hair has changed from a salt-and-pepper gray to a dark brown that may be permanent, and my beard grows faster. Immediately after transplant, my skin seemed to be as young as a boy, but lately seems to be aging. She even changed my blood type: I was A-, now I'm O+. How much more intimate can a relationship be?<br />
<br />
Years ago, when I was hiking with the <a href="http://www.sierraclub.org/singles/">Sierra Club Singles</a>, a young woman talked about a man she had been "with" for several years: "When I was with Henry...." Her matter-of-fact use of that single word struck me at the time as being astonishingly revealing without conveying a single detail. In that sense, with respect to my donor, I have been with her for almost a year.<br />
<br />
Ivonne and I have speculated about who she could be: a military person, a paramedic, a fireman? Certain professions seem to donate more often than others. For all I know, she's a punk rocker with spiky hair and ghastly tattoos. Or she could be a young mom. Or both. Perhaps someone in her family once needed a transplant, so now she volunteers. I can't stop speculating.<br />
<br />
It took many weeks to find a match for me. Apparently, there was something rare about my blood but I don't know what it was (not "is," as my old blood is gone). I had a drop of Cherokee blood in me — does she? Is she white, black, brown, or green?<br />
<br />
None of my questions are of practical significance, but I need to know the answers nevertheless. She saved my life. She is my sister. She fills my heart.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGrS5JvxZSH1AmkQRawM6xY-J7attRUF6fOehv7HnNJ9AjX612-MLOc3w85JNidmDyIRs5csHMAOrIije5ocZ-WwEZwD9FyM2DrlxBclWmxDJ1DS1jlS6Uc0rXfdwjPVMWCMI7WBmVYkQ/s1600/flowerstop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="80" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGrS5JvxZSH1AmkQRawM6xY-J7attRUF6fOehv7HnNJ9AjX612-MLOc3w85JNidmDyIRs5csHMAOrIije5ocZ-WwEZwD9FyM2DrlxBclWmxDJ1DS1jlS6Uc0rXfdwjPVMWCMI7WBmVYkQ/s320/flowerstop.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.nesseler.org/pages/mm/charts/24apr2011.htm" imageanchor="1" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgexkaEkUTmqYr_eZTk8Kfbp1C4WW3tj5UlaJnYiO04XcWNlbOUZ9MtReW96TgCALTl3cPgLlai3-SPrWoFzC5fefcYMIZjxuVPqPucxG8awK3QfSMYUoXHw-g2RjPzSl_kRnLX1EcNG6M/s400/24apr2011.jpg" width="400" /></a></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Click on the chart for a larger view</td></tr>
</tbody></table>Once more, there's an unexpected and unwelcome upswing in all three measurements: kappa, lambda, and the ratio between the two. What am I to do?<br />
<br />
I think I have only two options. One, I take <a href="http://www.drugs.com/revlimid.html">Revlimid</a>, the only chemotherapy of which I am aware that can attack the cancer without simultaneously damaging my new immune system (aka, me). Revlimd failed to work well for me in 2009, if I am remembering the year correctly, but today I have different expectations — the purpose of taking Revlimid now would to tip the balance of war to the side of my new immune system. Therefore I would be taking a small dose, perhaps as little as 5mg/day, because all I need at this point is to put a finger on the scale.<br />
<br />
Yet there are other alarming changes. Last week's <a href="http://www.petscaninfo.com/zportal/portals/pat/petct_basics">CT-Pet</a> revealed mild activity in my right femur. Unfortunately, that area was not part of the CT so it will have to be imaged next week to determine if the activity is dangerous. Also, my creatinine went up from .8, a wonderfully low number, to 1.2, and then down to 1.1 in a three-week period. At the same time, and for the first time, my <a href="http://www.labtestsonline.org/understanding/analytes/bun/test.html">BUN</a> went up to 27, then 24 (still too high). Something is obviously going on with my kidneys. There are minor signs of <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001461/">Henoch-Schöenlein purpura</a> on my skin. My RBC has been low (~3.5) since the transplant, but recently it dropped to 3.1. I feel weak. <br />
<br />
All of which says, it may be time to go back to my donor. Like an energizing pep-talk at half-time, <a href="http://www.aetna.com/cpb/medical/data/600_699/0638.html">lymphocyte infusions</a> (DHL) revitalize the immune system against the cancer, quite frequently spurring it on to victory. The downside is that graft-vs-host disease is often significantly increased, even to the point of being life-threatening. DHL is not a step to be undertaken lightly, but, if I want to survive, neither must it be delayed. If I go for Revlimid now, and it doesn't do the job, by the time we are sure it's not going to work will I be too late for the lymphocyte infusions?<br />
<br />
As a general in the war against cancer, I am obsessed with avoiding two errors: acting too soon and acting too late. Both mistakes have deadly consequences: act too soon and you've used up ammunition better saved for later in the battle; act too late and the enemy overruns your lines.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com1tag:blogger.com,1999:blog-8059395179650562655.post-56002042037646393522011-04-02T13:01:00.000-07:002011-04-15T10:57:46.982-07:00And now for something completely differentI have friends who drive me nuts, which, admittedly, for me isn't a major road trip. Maybe just a ride around the block. They email me pictures and videos of precious kittens, bears with their heads caught in car windows, seagull thieves, hapless bank robbers and the like, as well as viral and decidedly loopy conspiracy theories. I just <i>love</i> my delete key.<br />
<br />
Once in a while, however rarely, I am emailed something that makes me laugh. The subject of this blog is decidedly serious, so I indulge my sense of humor as much as I'm able, if only to neutralize the heartburn. I liked this video even though it has nothing whatsoever to do with myeloma. I'll try to be serious again next week. If you don't want to soak your keyboard, don't drink anything while watching!<br />
<br />
<object height="337" width="416"><param name="movie" value="http://www.youtube.com/cp/vjVQa1PpcFPdSvw3bJS409N1DfNHq1bsnmoQ-6tWQ2w="></param><embed src="http://www.youtube.com/cp/vjVQa1PpcFPdSvw3bJS409N1DfNHq1bsnmoQ-6tWQ2w=" type="application/x-shockwave-flash" width="524" height="337"></embed></object>,Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com5tag:blogger.com,1999:blog-8059395179650562655.post-45516677397360879382011-03-27T14:56:00.000-07:002011-03-27T21:38:39.188-07:00I Take It All Back!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.nesseler.org/pages/mm/charts/17mar2011.htm" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAR8Xumu6dTs6dOBA1HSeSQeH5yqVptTivs7js_TJviTtP5k8ivXlyeXvN2zvgWToMk_v7TmQc4cfQ77lair3I8dMphRnqgfzpV3h7HWaNI4OxA6hGWI8-rWM7ss2AxcH4f14ENuwPXEI/s400/17march.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From August, 2010 to today. Click on Me.</td></tr>
</tbody></table>Once upon a time, I understood my labs well enough to know what they meant and, together with past data as shown on charts like this, where I was going. This is the best way I know to chart a course through the crises of cancer.<br />
<br />
This chart plots my <a href="http://en.wikipedia.org/wiki/Bence_Jones_protein">light chains</a> (kappa, lambda, and the ratio of the two) from last August to last week. If the red line, which represents my tumor burden, resembles a roller coaster, I very much feel as if I've been riding one. On October 13th, I was clearly rolling down a steep slope toward remission. If I straight-lined the descent into the future, I would be in remission by Thanksgiving! The ordeal of the allogeneic transplant was giving me my life back!<br />
<br />
Except it didn't. Instead, the red line climbed sharply upward. By Thanksgiving, my Freelite blasted through 53.8 and I was shopping for a cemetery plot. The transplant had failed, or so I thought, distraught. (Lonnie, <i>plot, thought, distraught? </i>Well, as they say,<i> </i>every writer is a failed poet.)<br />
<br />
Yet the next measurement showed a steep decline, just as if the coaster had gone over a peak and was plummeting deliriously downward. By January 24th of this year, the cancer had dropped to 16.4. Well, I thought, the previous peak was a meaningless hiccup. The war between my new immune system and the ever-evolving cancer was whipsawing me between victory and defeat. Again, I convinced myself that the chart was showing me on a path to remission. Finally, after setbacks, my immune system was beating the cancer!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtQBxhbZDLVTRktL8EH5sKLA1_g52I3JD3_vTkvCjHgmej4IYmNnRAEZo06qiS9gAPFH3T30tzH0cQGWzJ1j04vo2sD5BKf3BTTbrzxr7TY-VPJES6UWfceyU7iAUkCAY1Pre0IVUV-vM/s1600/person_with_upset_stomach_after_riding_a_roller_coaster_royalty_free_080922-130075-169050.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtQBxhbZDLVTRktL8EH5sKLA1_g52I3JD3_vTkvCjHgmej4IYmNnRAEZo06qiS9gAPFH3T30tzH0cQGWzJ1j04vo2sD5BKf3BTTbrzxr7TY-VPJES6UWfceyU7iAUkCAY1Pre0IVUV-vM/s200/person_with_upset_stomach_after_riding_a_roller_coaster_royalty_free_080922-130075-169050.jpg" width="168" /></a></div>Until one month later, to the day, when the coaster jerked upward again, flattening my insides. At that point I gave up trying to prognosticate. I've been charting my myeloma for many years, always knowing where I was and where I was going, but what I see now is unpredictable. An allogeneic transplant put me on a whole different ride, one alternatively elating and terrifying. The techniques I had developed to master the inner game of cancer were no longer useful. I am hurled up and down, back and forth, expecting at any moment to be throwing up all over myself.<br />
<br />
Yet, last week, a month later, the numbers went the right way again, with kappa reaching its lowest point in several years. At the same time, the rest of my markers, which aren't on this plot, were all good. <a href="http://en.wikipedia.org/wiki/Elevated_alkaline_phosphatase">Alkaline phosphatase</a>, for example, is again normal, a clear indication that my bone lesions are stable. <br />
<br />
What am I to think? How do I find peace of mind on this uncertain, torturous, terrifying course?<br />
<br />
So I had Excel, which does the charting magic, produce a trend line over the kappa data by <a href="http://en.wikipedia.org/wiki/Linear_regression">linear regression</a>, the result of which is the straight black line on the chart. A trend line reduces complex or confusing data to a simple but often usable representation. In essence, it replaces the ups and downs of the roller coaster with an equivalent, smooth path. I like the analogy to a carnival ride because overall a coaster is always descending despite its temporary upward swings. To briefly change metaphors, a trend line plots the forest over the trees.<br />
<br />
Neither elated nor depressed, I am comforted by the obvious relevance of the trend line. It says to me, regardless of the wild variations, there is meaning in the numbers, and that my new immune system <i>is</i> winning the war even though it has lost a few battles. The terrifying ride may have been worth it after all. (OK, Lonnie, rampant alliteration and <i>four</i> metaphors in one post — storms at sea, roller coaster rides, forests and war?? <b>Enough already!</b>) <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2mTi6_FEi3sOOrMDzehJGCSnakN99oZBVZNF1-B4L5UOsFoswRufTeY6TsHHsHJQEJpsG-jEHriJJB8CNEqIWoH4O9gKkQ792u2dLGFiIU8E5Psu1PWy2l41klTJBN2Rn1TM43RrxzCU/s1600/shutterstock_roller_coaster.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2mTi6_FEi3sOOrMDzehJGCSnakN99oZBVZNF1-B4L5UOsFoswRufTeY6TsHHsHJQEJpsG-jEHriJJB8CNEqIWoH4O9gKkQ792u2dLGFiIU8E5Psu1PWy2l41klTJBN2Rn1TM43RrxzCU/s400/shutterstock_roller_coaster.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Life</td></tr>
</tbody></table>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com2tag:blogger.com,1999:blog-8059395179650562655.post-15470458591642309382011-03-18T18:47:00.000-07:002011-03-23T13:18:48.568-07:00Potpourri #3: Pictures, Progress, Politics, and a Puzzler!<div style="font-family: Arial,Helvetica,sans-serif;"><b>BEFORE AND AFTER</b></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghUHfouxt3Ho1PqH9klQEfn009WK288LnMHuval8xecVZTUrQc1sptw-b8fwBh_E8wxCW20myWk71fT3sM5EbFaGGvcsaqi4u1NGIBfY0PwqnEzRN4gchJGZrEejjTYXORUpBOtJO5EVs/s1600/Composite2.jpg" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghUHfouxt3Ho1PqH9klQEfn009WK288LnMHuval8xecVZTUrQc1sptw-b8fwBh_E8wxCW20myWk71fT3sM5EbFaGGvcsaqi4u1NGIBfY0PwqnEzRN4gchJGZrEejjTYXORUpBOtJO5EVs/s400/Composite2.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three Months after Autologous | Eight Months after Allogeneic</td></tr>
</tbody></table>Be sure to click on the photo above to appreciate the full catastrophe, especially the loss of fifty-five pounds from the allo, making me but a shadow of my former self. While I haven't simply been waiting for my body to recover naturally, which it seems disinclined to do, it is clear that once my back heals up from the kyphoplasty, full recovery will require serious exercise. This will be difficult for me because of my inherent laziness.<br />
<br />
<div style="font-family: Arial,Helvetica,sans-serif;"><b>BELL'S PALSY</b></div>My <i>Bell's Palsy</i> has slowly improved, albeit with a relapsing/remitting course. Here's what I looked like at Christmas, when it was at its worst:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih9rVUDBmsmKUgCuMUsjzDUsU8HRO_s3rapb7GaUYxGcY3950Vpq6wBgq2ZdJNKUby4D4gOF7qtUwtXKx2c42Y7MXS09FQhHFCnbKDQZfkDAqELK9jKsFDb-gqpTb98nFf6ZSGakajGCI/s1600/bells.jpg" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih9rVUDBmsmKUgCuMUsjzDUsU8HRO_s3rapb7GaUYxGcY3950Vpq6wBgq2ZdJNKUby4D4gOF7qtUwtXKx2c42Y7MXS09FQhHFCnbKDQZfkDAqELK9jKsFDb-gqpTb98nFf6ZSGakajGCI/s400/bells.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm the one on the left</td></tr>
</tbody></table>Because the tear ducts for my left eye are paralyzed, my vision has drastically deteriorated. If I lie on my back, my eyes dry out painfully. At night I have to wake up two or three times to use eye drops (<i>Hypo Tears</i> are the best, although expensive). If I am upright, too much fluid distorts my vision — I am constantly dabbing my eyes with tissue and mechanically blinking with my fingers. Finally, if I look down, both eyes flood (I think the right eye floods sympathetically).<b> </b><br />
<br />
<b>PROGRESS, OR LACK THEREOF</b><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.nesseler.org/pages/mm/charts/24feb2011.htm" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgARkHj-0loSZAgNwDMYSc8DUYZMfgH3PvLaDCSvHvGVyNsVQcpQ-5U-yJkGU0tPz0TcO7YkA0KBlu4_jErXUKrf6b5lZ0jtuYFgV2d54rUQNLAYEmm-S0KqasA4upSJJojYXD6RWS0cRY/s400/24feb2011.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Click on the Chart to Enlarge</td></tr>
</tbody></table>I had expected to see another reduction in kappa, but, instead, it's unchanged from last month (+5.5). I like the drop in lambda, which is as inexplicable as its recent rise. I was apprehensive that my cancer had mutated into another type, as it sometimes does. Chemotherapies for myeloma tend to be mutagenic. Lambda is more troublesome than kappa because the particles are too big to pass easily through the kidney. The resulting accumulation can lead to kidney failure. I am breathing more easily now that I've seen the drop in lambda.<br />
<br />
My labs used to tell me where I was and where I was going. After the allogeneic transplant, I find myself living an unpredictable life in an alternate universe largely devoid of explanation. I hereby relinquish all forms of medical prognostication. They no longer help.<br />
<br />
<div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: x-large;"><b>WAR!</b></span></div>I hope you will permit me to repeat a useless but sadly valid observation: wars are incredibly easy to start but deucedly difficult to stop.<br />
<br />
One of the few wars that ended quickly began with the invasion of Grenada, codenamed <i>Operation Urgent Fury,</i> on October 25, 1983. It lasted about a day. Of course, the population of Grenada was approximately 100,000, the size of Davenport, Iowa. The next-shortest was <i>The Battle of San Juan Hill,</i> which began on the First of July, 1898, and ended three days later.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnHuO-ssoMLy1tnJAi19JQ-3yoG5hXFB8iNeiHHqyGVx5QdxRQiAVBjAxMcOUy2mPMfn5LKN2iBzlfVYt6cKVE7JJAGuigKyBe4VUFexdjAxhWKBQ9XjfU6VXeMn3kztSQX1FqXMuIt2o/s1600/roosevelt.jpg" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnHuO-ssoMLy1tnJAi19JQ-3yoG5hXFB8iNeiHHqyGVx5QdxRQiAVBjAxMcOUy2mPMfn5LKN2iBzlfVYt6cKVE7JJAGuigKyBe4VUFexdjAxhWKBQ9XjfU6VXeMn3kztSQX1FqXMuIt2o/s400/roosevelt.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Teddy Roosevelt is left-of-center, as he was in life</td></tr>
</tbody></table>In recent history, wars seem to have become permanent. I refuse to make the analogy to George Orwell's <i><a href="http://en.wikipedia.org/wiki/Nineteen_Eighty-Four">1984</a></i>, where perpetual war was considered to be politically expedient and therefore desirable (see <i><a href="http://changingminds.org/techniques/language/figures_speech/praeteritio.htm">Praederitio</a></i>). Orwell is by far my favorite essayist.<br />
<br />
<div style="font-family: Arial,Helvetica,sans-serif;"><b>HOW AN $8 FAN BECAME A FINANCIAL FIASCO</b></div>One of my daughters, who shall go nameless lest this post be used later against me in her murder trial, came running up to me with alarming news: her computer had shut down and refuses to come back up!<br />
<br />
The children's computer, which was my old game machine, a hand-built speed demon, had complained of USB over-current (rather like a blown fuse) before shutting itself down. I disconnected all of the USB devices, but, still, the message and the shutdown. I was baffled.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKrTZMYEdNuZE9vbMnSGwIO82dPGIuvS2cW5gbIVsehiGyrPaIIyuZ1rCkDeZd_rMu_G0JeIC27JZIaILA3umVAxCzQ0GdJTmWBtkC1Dgsftfh5hkDuhIMMbMWrAszRnF5u9B6AZtvR_U/s1600/tombstone-RIP.png" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKrTZMYEdNuZE9vbMnSGwIO82dPGIuvS2cW5gbIVsehiGyrPaIIyuZ1rCkDeZd_rMu_G0JeIC27JZIaILA3umVAxCzQ0GdJTmWBtkC1Dgsftfh5hkDuhIMMbMWrAszRnF5u9B6AZtvR_U/s200/tombstone-RIP.png" /></a>Then I noticed that a case fan had burned out. The spindle was charred and the blades were difficult to turn with my fingers. Could the error message be incorrect? So I put in a new case fan, turned it on, and got the same message. More bafflement. The second time I tried booting up the machine, it decided that death was better than torture by USB and promptly shut down for good. <i>Requescat im pace.</i><br />
<br />
So I reasoned myself into building a new game machine with state-of-the-art components. First, in this day and age, kids need a computer. Curiously, building a cheap computer for them seemed to make no sense to me. What <i>did</i> make sense to me was to give them my 3.8GHz speed demon, which is adequate for any game on the planet, and build a new machine with state-of-the-art components for gaming. (Do you have any idea how many hours a day an adult male not unlike myself can spend fighting exotic monsters in games like <i>World of Warcraft?</i> Yet, at the same time, be thoroughly appalled at how much time the children waste on <i>Facebook, MSM,</i> and <i>Youtube?</i>)<br />
<br />
When a man wants to do something incredibly stupid, a man can invent all sorts of plausible-sounding reasons to convince himself that it's the right and necessary thing to do. Fortunately, my wife's idea of <i>digital</i> has something to do with painting her nails, so there was no voice of reason to get in my way.<br />
<br />
Therefore, I could happily spend all kinds of money I didn't have on something I didn't need — a machine that today runs at an absolutely <i>blinding</i> 4.0GHz. Without all kinds of extremely expensive high-tech components (think <i>liquid nitrogen</i> or <i><a href="http://en.wikipedia.org/wiki/Computer_cooling#Phase-change_cooling">phase-change</a></i> cooling), that's about as fast as a desktop computer can get. I refuse to calculate the final bill. I stopped counting at $837 although the final bill is probably a few hundred more.<br />
<br />
Finally, I moved the guts of my old machine into my kid's enclosure, pushed the start button, and SPLAT! No change. USB overload.<br />
<br />
OK, I thought, this is bloody impossible. I stared at the machine stupidly for many minutes.<br />
<br />
Then, with a drawn-out, audible "ah...", came the dawn. What my darling daughter omitted from her story was that she or her sister had broken the front-panel USB connector, shorting out the pins. After a few minutes with a magnifying glass and a miniature screw driver, the machine came right up. <br />
<br />
Had I been told the whole story, the fix would have cost $8 plus shipping. Instead, I wound up selling mutual funds when the market was diving. (Do give me moral credit for not saying I <i>had</i> to sell them.)<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAFKCuZgceMB5H5A5hYVjDZSppwuNfyDPTluTzPgkQWUtRO_YeMIk2T6ZqjmbyQawo-6Tp1hgp8qn63Wi2Ti7rjzu8Bsm0p1nUHAfZDHd_JrUS5DSQjkWBPmzZ-krcIHYySY1bxY1Co_I/s1600/prune.jpg" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAFKCuZgceMB5H5A5hYVjDZSppwuNfyDPTluTzPgkQWUtRO_YeMIk2T6ZqjmbyQawo-6Tp1hgp8qn63Wi2Ti7rjzu8Bsm0p1nUHAfZDHd_JrUS5DSQjkWBPmzZ-krcIHYySY1bxY1Co_I/s400/prune.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of my Characters, Prune, from the<i> <a href="http://www.riftgame.com/en/">The Rift</a></i></td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5Maz43KgUT6Jmh-5Bv428HXIwRewlozXg-MA0a1MlF3a95STj5f-mL_rmBsFY578I5PUjEbB412nX4g74swbsO0DEcBPcD6bPOF_nNZEP42YnvX7AHWRfq-JusW2XPFcPE0Hy1FBPUc4/s1600/computerguts.jpg" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5Maz43KgUT6Jmh-5Bv428HXIwRewlozXg-MA0a1MlF3a95STj5f-mL_rmBsFY578I5PUjEbB412nX4g74swbsO0DEcBPcD6bPOF_nNZEP42YnvX7AHWRfq-JusW2XPFcPE0Hy1FBPUc4/s400/computerguts.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Anatomy of a Hand-Built Game Machine</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGrS5JvxZSH1AmkQRawM6xY-J7attRUF6fOehv7HnNJ9AjX612-MLOc3w85JNidmDyIRs5csHMAOrIije5ocZ-WwEZwD9FyM2DrlxBclWmxDJ1DS1jlS6Uc0rXfdwjPVMWCMI7WBmVYkQ/s1600/flowerstop.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGrS5JvxZSH1AmkQRawM6xY-J7attRUF6fOehv7HnNJ9AjX612-MLOc3w85JNidmDyIRs5csHMAOrIije5ocZ-WwEZwD9FyM2DrlxBclWmxDJ1DS1jlS6Uc0rXfdwjPVMWCMI7WBmVYkQ/s320/flowerstop.jpg" /></a></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com9tag:blogger.com,1999:blog-8059395179650562655.post-60551118289072232062011-02-21T08:49:00.000-08:002011-03-23T13:23:56.379-07:00Jumping Back to Life<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRO6o3Qhrm97U9FnO0TfqSE7k76tMP7Q8Cxgh5eacuILedUQlgE5sPEn2vROBazDsTAJgcUPU3O1B3xcwKtY3Ugtz6PzjTqMu0rTblHp3J05l9CTdtVmMG48fRClYhU9BvPBo6TDpusE0/s1600/Frog+in+a+Pot.jpg" target = "_blank" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="281" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRO6o3Qhrm97U9FnO0TfqSE7k76tMP7Q8Cxgh5eacuILedUQlgE5sPEn2vROBazDsTAJgcUPU3O1B3xcwKtY3Ugtz6PzjTqMu0rTblHp3J05l9CTdtVmMG48fRClYhU9BvPBo6TDpusE0/s320/Frog+in+a+Pot.jpg" width="320" /></a></div><br />
The story, which I trust is an urban legend, purports to be of a serious experiment performed at some hopefully non-existent Ohio college. The researchers claimed that if they dropped a frog into boiling water, the frog, as you might expect, instantly jumps out. However, if the frog is <i>gently</i> placed in room-temperature water, and heat is oh-so <i>gradually</i> applied, the frog never even attempts to escape. The horrifying result is something that I'm sure has been given an attractive name by French chefs. Like <i>pâté de foe gras.</i> Or, more probably, given all the hits to my brain over the last two years, my information is wrong. Perhaps the study didn't come from Ohio State University at all, but was recently found inside a Nazi dispatch case in a cave in Bavaria.<br />
<br />
The bone damage done by multiple myeloma is often like the sea gently lapping at a big rock: each wave by itself does little, but after a few thousand years there's no more lapping because there's no more rock. Myeloma often works the in same way, so slowly eating away at our bones that we don't immediately notice the erosion. When the inevitable début comes, it can come as a complete surprise. Such as when a pelvis break dropped me instantly to the ground in 1998.<br />
<br />
Now I know what "insidious," as in "of insidious onset," really means. Even the freest nation on earth can be ruled by malefactors of great wealth if the erosion of liberty takes place sufficiently slowly. By the time the continuing loss becomes obvious, it can't be stopped.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBIZJxcvJHvOdJYH8aTJ2lqoBXbRYRlJeVpbde0vfsignyMV4daoi1TvTmgc0NBqnw9KuJTVKxuz52dcwVhIZRc9SysXUzAyl2ezYdETalA9h6jjvmURnIp6VQTYyV9AIq7I3YS5maQI8/s1600/ancas+de+rana1.jpg" target = "_blank" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="151" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBIZJxcvJHvOdJYH8aTJ2lqoBXbRYRlJeVpbde0vfsignyMV4daoi1TvTmgc0NBqnw9KuJTVKxuz52dcwVhIZRc9SysXUzAyl2ezYdETalA9h6jjvmURnIp6VQTYyV9AIq7I3YS5maQI8/s200/ancas+de+rana1.jpg" width="200" /></a></div>In a larger sense, however, myeloma is different. Early discovery offers no survival advantage. Indeed, early treatment is more likely to shorten life rather than extend it. Early treatment is by definition unnecessarily risky. What other cancer is like that? Imagine our poor frog — even if he manages to jump out of the experimental pot as soon as he discovers he's in it, he'll be <i>sautée de grenouille</i> by nightfall.<br />
<br />
Myeloma is a tale of heroic but temporary victories amidst a string of increasing losses. Of course, I'm not solely referring to direct, physical damage, but also to indirect damage wreaked on everything else. Myeloma and its chemotherapies spare little. Declining vision keeps us inside at night, neuropathy and spinal damage stops the dancing, our ears ring, our kidneys fail, our immune systems offer little protection from disease. Relationships are stressed. Eventually, everything in life becomes, in a sense, malignant. <br />
<br />
In the fall of 2009, while circling in the bowl, exhausting my every avenue of escape, a lifeboat was unexpectedly thrown to me. I scrambled in without hesitation. Luckily, during the descent I missed the rocks at the bottom of the veritable <i>Niagara Falls </i>of treatments, an allogeneic transplant from a matched but unrelated donor. Through the increased depth of field available from the lens of recovery, I have become more aware of the subtler losses sustained over the last twelve and a half years. I don't dwell on them. What I <i>do</i> dwell on are the enriching qualities of life being returned to me. Because the individual losses were seemingly small and were accrued slowly, I had forgotten how diminished my life had become.<br />
<br />
Survival brings with it existential redemption. The accelerating return to importance of life's mundane challenges is annoyingly wonderful. In my illness, they simply weren't important. Now I find myself coping with a raft of them: helping a daughter who is struggling with algebra, extracting a much-needed refund from a reluctant IRS, repairing water damage to the stucco, preparing the garden for this year's tomatoes, scheduling a long-deferred refraction. All these are signs of a new and greater <i>normal</i> that is being formed, one that reflects the end of a long period of fundamental disturbance and marks the beginning, I hope, of a sustained period of simple living.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://photobucket.com/images/seagull%20steals%20chips" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img alt="Seagull theif Pictures, Images and Photos" border="0" src="http://i408.photobucket.com/albums/pp166/Asendarei919/Seagull_steals_chips.gif" /></a></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com4tag:blogger.com,1999:blog-8059395179650562655.post-38075851192746688912011-02-16T18:57:00.000-08:002011-02-25T01:20:58.928-08:00Four Beautiful Words!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzfOhVT48WV5IBUeOuw3tufocNC6nxmbKsiWOG0LIqG0DQBsF0mNL_6MgNUK2wuz8Khqih7AiYSS0bwK0Z8ozEbKHA-iS-c8qPw-T3JGGkHxbXY5sDMZCaUqpPycqOK3DP76L6HYrVPJ8/s1600/celebration.jpg" imageanchor="1"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzfOhVT48WV5IBUeOuw3tufocNC6nxmbKsiWOG0LIqG0DQBsF0mNL_6MgNUK2wuz8Khqih7AiYSS0bwK0Z8ozEbKHA-iS-c8qPw-T3JGGkHxbXY5sDMZCaUqpPycqOK3DP76L6HYrVPJ8/s400/celebration.jpg" width="400" /></a></div><br />
The words are, "The surgery went well!" Not only do they tell you that you are likely to get a good result, but if, like me, you've already had a few surgeries and a couple of transplants, including an <a href="http://en.wikipedia.org/wiki/Bone_marrow_transplant#Allogeneic">allo</a>, in the darker corners of your mind you're wondering if you are going to wake up at all. These beautiful words also tacitly tell you, you're still alive!<br />
<br />
The <a href="http://en.wikipedia.org/wiki/Kyphoplasty">kyphoplasty</a> on <a href="http://en.wikipedia.org/wiki/Lumbar_vertebra">lumbar</a> #3 restored a bit of my old height, and I am no longer in serious pain or bending at the waist when I walk. I was in hospital many hours, perhaps eight, before I heard those great words (everyone was running late — the surgery itself only took an hour). I've been smiling, as wide as the <a href="http://en.wikipedia.org/wiki/Bell%27s_palsy">Bell's Palsy</a> permits, ever since.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.nesseler.org/picts/mm/kyphoplasty1.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="263" src="http://www.nesseler.org/picts/mm/kyphoplasty1.gif" width="320" /></a></div>Kyphoplasty is miraculous when compared to older surgeries, so, trust me, you'll want it. Kyphoplasty, usually performed on an out-patient basis, often produces a genuine fix. Your skeletal height is restored. The <a href="http://en.wikipedia.org/wiki/Intervertebral_disc">disks</a> are not damaged, so your spine will still be springy, leaving you less apt to suffer future compression fractures.<br />
<br />
The operation requires general anesthesia. Two remarkably small lateral holes are drilled, one on each side of the collapsed vertebra. The next step is something your doctor is unlikely to mention unless you put a <a href="http://en.wikipedia.org/wiki/Hammerlock#Hammerlock">hammerlock</a> on him: the fracture will have to be broken again in order to fix it. That is why kyphoplasty must be done within about six months of the fracture. Because bone heals over time, the longer the surgery is delayed, the harder it is to break. See your doctor right away!<br />
<br />
Another thing surgeons don't usually mention is that a long-term anesthetic is often pushed inside before closing, enabling them to tell you with a straight face that the next day you'll feel little discomfort. Unfortunately, the stuff wears off in about four days. <i>Then</i> you might suffer a bit, but not nearly so much as you would have otherwise (you've already been given a few days of peace in which to heal up). This time the anesthesiologist didn't apparently give me the long-term anesthetic, so I hurt today more than expected. Nevertheless, a little Vicodin and I'm all smiles. The two small bandages on my back can be peeled off in five days, leaving little or no scaring.<br />
<br />
I suffered greatly during and after the <a href="http://en.wikipedia.org/wiki/Bone_marrow_transplant#Allogeneic">allogeneic</a> transplant, but I must say, a lumbar compression fracture, when untreated or untreatable, can ruin your life. So my advice is, if you want to lift your spirits, before or after surgery, make sure the bottle doesn't weigh more than a couple of pounds.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com1tag:blogger.com,1999:blog-8059395179650562655.post-46236749782299254252011-02-02T12:14:00.000-08:002011-02-03T01:35:35.982-08:00The Joy that Dare Not Speak its Name<div class="separator" style="clear: both; text-align: left;">An allogeneic transplant from a matched but unrelated donor is the most punishing procedure in all of medicine. The procedure is especially punishing for multiple myeloma patients: a substantial fraction of us die, not from the cancer, but from the transplant itself (in their statistics, doctors refer to this as "Transplant-Related Mortality"). When I was first diagnosed, I read an article in the <i>New Yorker</i> about the transplant experiences of Courtney Stevens, a sophomore in high school, and Tamar Lowenstein, a corporate lawyer with three children, entitled <a href="http://www.nesseler.org/dl/mm/transplant/newyorker1998.pdf"><i>A Healing Hell</i></a>. I recommend it. (My experience was more like Tamar's than Courtney's.)</div><div class="separator" style="clear: both; text-align: left;"><br />
</div>For many reasons, this January was awful. For one, I spent the month trying to accept the unthinkable — that <i>I had endured the horrors of an allogeneic transplant for little benefit.</i> Part of me knew that I once more had to adopt the mindset of someone who had only a short time to live. I also had to accept that a good portion of my remaining time would be difficult. I pleaded desperately with my doctor to tell me what I already knew, that the transplant had been a failure. Perhaps if he said the words, I could resign myself to that fact despite all the kicking and screaming that was going on in in my head.<br />
<br />
I had good reason to try to accept failure. Look at this chart:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTpyVgJ1HU64TUKQPOj4NOIjbnCAgdXbrXtW55KXpfw6EnLgEXczYV2booR58niCiBtzXp2sPNUgPG0Jp5OPvtTrj7A-bv7h8POIP8OLOqxe6VCGQniZAQZAbeyrzX1kAXNK8vCUslT20/s1600/PS+of+Transplant.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTpyVgJ1HU64TUKQPOj4NOIjbnCAgdXbrXtW55KXpfw6EnLgEXczYV2booR58niCiBtzXp2sPNUgPG0Jp5OPvtTrj7A-bv7h8POIP8OLOqxe6VCGQniZAQZAbeyrzX1kAXNK8vCUslT20/s400/PS+of+Transplant.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The <span style="color: blue;">blue</span> line represents the outcomes for an allo from a matched but unrelated donor</td><td class="tr-caption" style="text-align: center;"><br />
</td></tr>
</tbody></table>Here is what the chart says: <br />
<blockquote>"A multi-center study published in 2005 of 229 patients (median age 52 years) undergoing non-myeloablative HCT for multiple myeloma found a three-year overall survival of 41% and a progression-free survival of 21%." </blockquote>The chart says that less than half of us survive one year. Compare that <i>dismal</i> forecast to yellowish line, which represents the considerably better outcomes for a first-time autologous transplant. <br />
<br />
But it gets worse. There is a vast difference between transplants performed for a chemo-sensitive individual and those who, like me, are chemorefractory. Our two-year survival is estimated to be only 25%. And to think I had the temerity to anticipate cure!<br />
<br />
During my fight with myeloma, I have had amazing luck. Every one of a large string of obstacles to transplant had to break in my favor. No one has any right my kind of good luck. It's irrational to count on it.<br />
<br />
I steeled myself for the results of tests from blood taken on the 24<sup>th</sup> of January. The December results were depressing. Although I was of type kappa, I was seeing a rise in lambda! I would tell myself over and over that the charts no longer showed a resistant cancer but, rather, showed a struggle between my new immune system and the cancer. They seemed to be equal adversaries in a tug-of-war. I thought, as my new immune system matured, it might become more effective in the struggle. I wanted to believe there was hope, but, deep down, I just couldn't. Was it time to purchase that cemetery plot? <br />
<br />
And then came this on the 27<sup>th</sup>:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.nesseler.org/pages/mm/charts/24jan2011.htm" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="218" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLKJcRjsi4c3yjG8jYGfgeCq5Sr1DXnKLE2LnfhPKfjEiKsJBPn3GSX6rCjCoanJXblFBop3R7Jmbbixu_7VCVXwknhFSqazBEStZ5Rv2jUw73rNUuZK6QTlrOXryJPdzdUt-lXC8OU94/s400/Freelite24jan.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Will you look at that drop!</td></tr>
</tbody></table>I was stunned. Girded for the worst, I was staring at the best. Kappa was clearly crashing, while the other two measurements were headed in the right direction. Additionally, for the first time in I don't know how many years, my metabolic panel was completely normal! Agape, starring stupidly at my paper in my hands, I was unable for a time to grasp what I was seeing. Although my CBC wasn't perfect (my red blood count was a little low), I saw nothing to lose sleep over.<br />
<br />
I almost missed one of the more significant results. For me, alkaline phosphatase has been, since the beginning, a reliable indicator of on-going bone damage. The number didn't register at first because it wasn't flagged. That's because it was completely normal — for the first time since my relapse years ago! In December, my alkaline phosphatase suggested that the cancer was tearing me up. To prove it, I developed a compression fracture and was smarting from several rib lesions. The tearing up has stopped. Now I can heal!<br />
<br />
Here's my theory (as inflicted on my doctor):<br />
<blockquote>"I think the crash seen in the chart is unlike one from chemotherapy. In that case, the chemo destroys a fraction of the sensitive cells, leaving the rest to reproduce and replace the sensitive population. In an allo transplant, the new immune system destroys some fraction of all the malignant cells continuously. This is a completely different mechanism. There are no immune-system-resistant cells. The only reason a cancer survives is that it can reproduce as fast or faster than the new immune system can kill it. The chart shows simple arithmetic.<br />
<br />
"For example, suppose each malignant cell can reproduce once in a given time period (let's call it a cycle). Then every cycle, absent a killing process, the cancer would double in size. However, if the new immune system can cut the number of malignant plasma cells in half each cycle, the tumor burden would neither increase nor decrease: the resulting curve would be flat. If the immune system destroys 3/4 of the total every cycle, then the cancer would drop by 1/2 each cycle. Which is why the reduction isn't linear once it gets going (what goes up exponentially, goes down exponentially). For that reason, I don't think the crash we are seeing is going to level out. The likelihood is that I'm heading for remission (at minimum). Perhaps even toward the C-word."</blockquote><div class="separator" style="clear: both; text-align: center;"></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzt5WabL_xcPdCDulf1MwfL0kjsqLHf-fr-51WbufYPCF0CHpA6ixoz-iH-Ugb7c2hO7FuJzoys5etScbDXIDpod1OlVHwsop1j58krIvN6nRkF245oriFjae6trwxmoVXzSPhiVpTZ2E/s1600/stressrelief.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzt5WabL_xcPdCDulf1MwfL0kjsqLHf-fr-51WbufYPCF0CHpA6ixoz-iH-Ugb7c2hO7FuJzoys5etScbDXIDpod1OlVHwsop1j58krIvN6nRkF245oriFjae6trwxmoVXzSPhiVpTZ2E/s320/stressrelief.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looks Like Cure to Me!</td></tr>
</tbody></table>There's nothing wrong with wishful thinking (that is, <i>hope</i>) when it is backed up by uncontradicted data. I can happily revel in it.<br />
<br />
The heavy weight of defeat is lifting from my shoulders. The ordeal of the transplant was NOT a failure. OMG, I said to myself, I <i>am</i> going to have to find a way to send four children to college! My garden <i>will</i> have tomatoes this year! I don't <i>need</i> a cemetery plot! My fabulous good luck <i>does</i> hold!<br />
<br />
Today, no matter how carefully I listen, I can't hear a fat lady singing <i>anywhere</i>.Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com7tag:blogger.com,1999:blog-8059395179650562655.post-38335031706861264082011-02-01T09:31:00.000-08:002011-02-01T09:31:07.099-08:00What, Two More Cancers??<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3UDT4IIkk6XtmJO178l0__gRotzkD6XKMjnxJ2HQIpWIcY7mNnr-Zsj0yXVF11v8bvxytJ43mtkX_y0SHVYCC_mpOevQccYtGaztUTuhwDPB87jvdEOy4YCGIyYWNF5NcEEY8iD31Gw0/s1600/basal_cell_carcinoma.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="185" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3UDT4IIkk6XtmJO178l0__gRotzkD6XKMjnxJ2HQIpWIcY7mNnr-Zsj0yXVF11v8bvxytJ43mtkX_y0SHVYCC_mpOevQccYtGaztUTuhwDPB87jvdEOy4YCGIyYWNF5NcEEY8iD31Gw0/s320/basal_cell_carcinoma.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some Other Poor Sod</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"></div>I was diagnosed last week with both <a href="http://en.wikipedia.org/wiki/Squamous_cell_carcinoma">squamous</a> and <a href="http://en.wikipedia.org/wiki/Basal_cell_carcinoma">basal</a> cell carcinomas. Apparently, multiple myeloma and an allogeneic transplant didn't challenge me enough. Patents with allogeneic transplants are urged to be examined by a dermatologist twice a year. I'm beginning to understand why. <br />
<br />
Basal cell carcinoma is the most prevalent but least dangerous form of skin cancer (although, when neglected, basal cell can cause serious damage). Squamous cell carcinoma, the second most prevalent, can be more complicated and problematic. (The third most prevalent skin cancer is <a href="http://en.wikipedia.org/wiki/Melanoma">melanoma</a>. ("You have, did you say, <i>multiple melanoma?</i>"). The shark bite on my back was the result of melanoma.)<br />
<br />
The squamous cell cancer, which is prominent on my right cheek, may have evolved from a common <a href="http://en.wikipedia.org/wiki/Actinic_keratosis">keratosis</a>, which is ironic considering that it is generally associated with sun exposure and I am a sun-avoiding, vampiric, <a href="http://en.wikipedia.org/wiki/Morlock">Morlock</a>-type creature known to inhabit the innards of computers.<br />
<br />
The cancers will both be removed by<a href="http://en.wikipedia.org/wiki/Mohs_surgery"> Moh's Surgery</a>, the least disfiguring type of surgery. Apparently, the Moh's surgery team can do both at the same time. Not that I care much about having a beautiful back, but avoiding a second date with the knife (for simple excision) sounded good to me. (I'm not even <i>counting</i> an upcoming <a href="http://en.wikipedia.org/wiki/Kyphoplasty">kyphoplasty</a>. Perhaps I need to make new friends.)<br />
<br />
In Moh's, injections of a long-term anesthetic means only having to endure the nasty pinpricks once (I am told that the reason pain killers sting is that they are acidic: why can't they — and, especially, dentists — add a <a href="http://en.wikipedia.org/wiki/Base_%28chemistry%29">base</a> to the shot to achieve a neutral <a href="http://en.wikipedia.org/wiki/PH">pH</a>?). A cup-shaped layer of skin is removed around the visible cancer, then frozen and sectioned in two dimensions. A pathologist then examines the margins under a microscope. If cancer cells are found, their exact location is marked on a map of the cancer. The surgeons then remove another layer of skin and cancer, but limited to the area where cancerous cells were found. The procedure is then repeated until no evidence of cancer remains. In general, Moh's results in less damage and disfigurement than does traditional excision. A plastic surgeon then "repairs" the damage.<br />
<br />
Moh's surgery is not appropriate for every type of cancer, but when the cancer is on the nose, ears, eyelids, or other prominent features, Moh's may be an appropriate choice. <br />
<br />
Caution! This squamous video is not for the squeamish. I mean it. You've been warned!<br />
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<iframe allowfullscreen="" class="youtube-player" frameborder="0" height="390" src="http://www.youtube.com/embed/HCWb0zvVVHI?rel=0" title="YouTube video player" type="text/html" width="480"></iframe>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com4tag:blogger.com,1999:blog-8059395179650562655.post-81213902396079902082011-01-28T16:48:00.000-08:002011-04-24T22:32:51.574-07:00The Athletics of Recovery<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilOCd5XO_7DYZfhknzbqSfBifJFZznyBB2moUIIJGpHZfPSKm2yyIo5BT8OW-97l8hyphenhyphentO_0CU6HYC_5a7ohX9WGt5mtcuVeecaTEH2qqSnyL8KCpACaL22jT5cs49-egllN_a4CketPcA/s1600/weight_lifting_07.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilOCd5XO_7DYZfhknzbqSfBifJFZznyBB2moUIIJGpHZfPSKm2yyIo5BT8OW-97l8hyphenhyphentO_0CU6HYC_5a7ohX9WGt5mtcuVeecaTEH2qqSnyL8KCpACaL22jT5cs49-egllN_a4CketPcA/s320/weight_lifting_07.gif" width="320" /></a></div>I have been searching without success to find a way to describe what it is like to recover from a procedure as physically and mentally devastating as an allogeneic <a href="http://en.wikipedia.org/wiki/Stem_cell_transplant">transplant</a> from a matched but unrelated donor (a "MUD," if you will). Now I think I have found a few useful analogies that may help.<br />
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Take weight lifting. A certain breed of hard-core lifter is never satisfied with their workout unless they push themselves to the limit. Whatever the exercise (<a href="http://en.wikipedia.org/wiki/Clean_and_jerk">Clean and Jerk</a>, <a href="http://en.wikipedia.org/wiki/Snatch_%28weightlifting%29">Snatch</a>, <a href="http://en.wikipedia.org/wiki/Bench_press">bench press</a>, <a href="http://en.wikipedia.org/wiki/Biceps_curl">biceps curl</a>, etc.), they load up the amount of weight they can lift no less then six times. In their terminology, every repetition of the exercise is called a "rep," while doing a number of reps in one attempt is called a "set." They stop when they can't finish a rep no matter how much they struggle. When a lifter is able to do, say, ten or more reps, the weight is increased, so that, once again, they can only manage six reps. <br />
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After a set, they either rest for the time necessary to recover or go on to a different exercise, one that doesn't rely on the same group of muscles as the first. After stalling out on the second, they return to the first exercise and repeat it. Their rule is, <i>three sets to failure</i> on each exercise.<br />
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<tr><td class="tr-caption" style="text-align: center;">As Pure as it Gets</td></tr>
</tbody></table>Similarly, take the incomparable <a href="http://en.wikipedia.org/wiki/Lance_Armstrong">Lance Armstrong</a>. His cycling takes him close to failure without falling over the edge for a seemingly <i>inhuman</i> length of time. With respect to exercise, the only difference between cycling and weight lifting, besides the fresh air, is that the endurance bicyclist must husband his or her resources over the long haul. After all, some races, such as <i><a href="http://en.wikipedia.org/wiki/Tour_de_france">Le Tour de France</a></i>, run for three weeks! The limits of a cyclist may not be as clear-cut as those of a lifter, but the underlying challenge, managing failure, is the same.<br />
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Which brings me back to me. When I left the acute hospital for the horrors of the so-called "rehab hospital," which I may tell you about some time, I could do very little. With respect to walking, I would reach my point of failure at about twenty paces, and I couldn't walk at all without assistance (e.g., a nurse and a walker). I couldn't stand up by myself or sit safely down on a toilet seat. At about half way down, I would lose control and fall the rest of the way. Then I couldn't get up without help despite grab bars for the disabled. I ended up having to make do with adult diapers. Talk about your forced regression to infantility! I'm surprised I didn't suck my thumb.<br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrUgsEDjz4axeXV0wxVxEeo7G_jdt0kVuVFDMy5gkdsGryaWtcMznaC6bs-3MfXAdBmxD35mh3TRy27wNAuTGhXPN70liXSdWWJ3s7DI2V95g0OQ9bMgWcY1m1R6lKd952pwG_aOARyV4/s1600/disabled.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrUgsEDjz4axeXV0wxVxEeo7G_jdt0kVuVFDMy5gkdsGryaWtcMznaC6bs-3MfXAdBmxD35mh3TRy27wNAuTGhXPN70liXSdWWJ3s7DI2V95g0OQ9bMgWcY1m1R6lKd952pwG_aOARyV4/s200/disabled.jpg" width="200" /></a></div>By the way, why are grab bars seemingly always put in awkward or useless places? How can fine restaurants or similar public establishments get away with slapping a disabled sign on a heavy restroom door that opens <i>toward</i> the person in a wheelchair?<br />
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Since then I have regained much of what was lost. It took me, for example, about three months before I could safely get into and out of my shower. Nevertheless, I have to be extremely careful doing it, rather like the captain of a mammoth oil tanker try nudge his ship safely to the dock. One tiny error can lead to disaster. Easy does it!<br />
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Every day I am presented with commonplace tasks that take me dangerously close to the point of failure. In my entire life I've never been as careful as I have to be now. There is challenge and danger in everything I do. Also like the weight lifter and the cyclist, whenever a task becomes doable (if not easy), another challenge opens up. For example, after relearning how to walk, I discovered I couldn't climb more than one rung of a ladder, and that it was surprisingly dangerous to walk on slopes and broken ground, an everyday problem in mall parking lots.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_vK5_LikvKniQBfWg37koZVRrHsVeDywuwHzOSu7bpxPWLaCJKjAMgU7ugJrvCWoiRU10UVarN73BCDFEHdBbN4KqtJMkRkTIUKA13QgoJwn0TRW6pdZ1ovDWFX_nU4R23AQv4kXePOE/s1600/Brewer-4000-Basic-Doctors-Exam-Table.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_vK5_LikvKniQBfWg37koZVRrHsVeDywuwHzOSu7bpxPWLaCJKjAMgU7ugJrvCWoiRU10UVarN73BCDFEHdBbN4KqtJMkRkTIUKA13QgoJwn0TRW6pdZ1ovDWFX_nU4R23AQv4kXePOE/s200/Brewer-4000-Basic-Doctors-Exam-Table.JPG" width="199" /></a></div>Today, if I'm very careful, I can pick up something off the floor. But if I find <i>myself</i> on the floor, I can't get up without a helping hand or making use of a sturdy piece of furniture. When I could walk again, I discovered I couldn't drive because lifting my leg to switch from the gas pedal to the brake was too difficult. Only just now can I manage to climb up on one of those ridiculous doctor's exam tables.<br />
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The take-away point of all this is that people who have an allogeneic transplant cannot content themselves with living within their limits. If they don't push to the edge whenever they can, they'll have to live within these limits forever! What do weightlifters, cyclists, and patients recovering from an allogeneic transplant have in common? I'll tell you.<br />
<div style="text-align: center;"><blockquote style="color: #674ea7;">IT NEVER GETS ANY EASIER.</blockquote></div>I jumped into the pond on the 11th of June and I'm <i>still</i> digging myself out of the muck. The challenges are different but not easier. I can't imagine running, for example. Or traveling in an airplane, mowing the lawn, planting the tomatoes, riding my motorcycle, climbing out of a traditional bathtub, or carrying anything heavier than a few pounds, just to name a few. (Carrying anything causes me to lose my balance.) I know that at some point these challenges, and the new ones coming, will become easier if I push myself. My inherent laziness doesn't help.<br />
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But lest you get the picture wrong, I must tell you that my life is nevertheless rich. Loving my new children presents no challenge at all. They are so funny! For example, if I hear ka-thump ka-thump, <i>splat</i>, ka-thump ka-thump <i>splat</i>, it's Jared leaping down the stairs. If, on the other hand, I hear a quick thump thump thump thump thump, thump thump thump thump thump, it's Sharon. They turn everything they do into some form of play. It's infectious — and I am learning from them. Every day I find myself doing something that I would have never imagined my doing before, such as relearning algebra so that I can help them with their homework.<br />
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I enjoy very much being <a href="http://www.merriam-webster.com/dictionary/avuncular">avuncular</a>. I completely blew my first chance at fatherhood, and never imagined there would be another. In a way, by being a good father now, I am making amends for my past. Ivonne tells me I'm doing rather well. I've never had any role more important, challenging, and satisfying than this one. I may be <i>too soon old</i>, but I'm not <i>too late schmart</i>.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihIdXSNDLa4zTITvXn5Sv4dLLajOBn3zKkZLYGVOFUZVu4LqJxTU_rQnjE5zY-1RyJ7N52uhayo8d3nqR9HtO87SCU0iA_XSt7fhpW-mShebdyZmHKyupokLQtW8V1JeLXQnN0daPCJmA/s1600/Jared%2526Sharon.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihIdXSNDLa4zTITvXn5Sv4dLLajOBn3zKkZLYGVOFUZVu4LqJxTU_rQnjE5zY-1RyJ7N52uhayo8d3nqR9HtO87SCU0iA_XSt7fhpW-mShebdyZmHKyupokLQtW8V1JeLXQnN0daPCJmA/s320/Jared%2526Sharon.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sharon and Jared</td></tr>
</tbody></table>In short, despite the continuing challenges of rehabilitation, including the upcoming surgical repair of another compression fracture and the five hours I spend in urgent care last Thursday (the result of a blood pressure spike while having my <a href="http://en.wikipedia.org/wiki/Groshong_line">Groshong</a> removed), I have enough of my life back to be rather happy. I am becoming inured to the daily ordeals. Perhaps, in a couple of weeks, I can break the invalid's habit of buying way too much from Amazon.com, whose <a href="http://www.amazon.com/gp/help/customer/display.html/ref=help_search_T1_1-2?ie=UTF8&nodeId=13819211&qid=1296170073&sr=1-2">Prime</a> policy of free shipping and no tax is seductively bankrupting, a true stroke of marketing genius. I still feel a touch of fear when I look at my current medical chart, which, unlike before the transplant, I do not understand, but I don't let my condition get in the way of my having a good time!<br />
<div class="separator" style="clear: both; text-align: center;"></div>Lon Nesselerhttp://www.blogger.com/profile/05544465172485743313noreply@blogger.com4