Back To My Oar

The short version of this story is that I managed to survive my first two weeks back at work.

I work on the same product development team as before the onset of my illness, which has both comforting and disorienting aspects to it. On one hand, I'm familiar with much of what's going on; on the other hand, it's as if I have been suddenly transported forward in time about 18 months. Fortunately, the team is approaching the end of a product release cycle, so I'm engaged in such low-pressure activities as reviewing documents vs. software code, which allows me to reacquaint myself with the various software tools, without having to use them to actually create anything new at this point.

Going in, there are two open questions in my mind about my ability to do this. The first relates to the simple requirement that I remain more or less stationary for eight or more hours a day, usually in a sitting position. This involves pressures on ribs and spine that, eventually, begin to bother me, giving rise to the desire to stretch out in a prone position. Since I work at home there is no problem with this logistically; but, to get anything done, the bottom line is that I need to be able to somehow piece together a number of sufficiently lengthy work periods, with hands actually on keyboard. The lie-downs stretch out the work day. So far, this does not seem to be much of a problem, but it's way too early in the game to tell.

The second concern revolves around the question of "chemo brain". Almost since the day chemotherapies were first introduced, patients have complained of a variety of neurological side effects, generally adding up to a sort of mental fog, an inability to focus or concentrate. Historically, the medical community has tended to soft-pedal such complaints as psychosomatic, or in any case as dominated by the benefits of said therapies. The blood-brain barrier, it was thought, prevented the chemotherapeutic agents from affecting the brain much. But over time, the anecdotal evidence apparently accumulated to an extent that required attention from the research community. So far, the research tends to confirm that chemo brain is real, but may be a result of some combination of chemotherapies, of the cancers themselves (the latter possibility arises from the fact that even cancer patients who have been treated only by means not involving chemotherapy can exhibit the symptoms), or simply of the stresses induced by the fact that the patients have life-threatening diseases that make them feel real bad, and have to take drugs that make them feel even worse.

At the time of my stem cell transplant, and for some time thereafter, I could claim some chemo brain-like symptoms; I could stare into space with the best of them. I tend to think, though, that in my case a lack of mental stimuli, chronic exhaustion, and feeling just plain awful much of the time, were mostly to blame. As I have recovered, I have noticed the episodes that could be characterized as instances of chemo brain diminish in number, duration, and intensity. Again, although it's too early to tell for sure, I'm so far unable to detect any diminution in my ability to marshall the brain cells for the work at hand. Shoot, I may even be smarter. No, probably not.

October 2010 Notes

This month I resumed taking omeprazole, after being otherwise unable to shake some serious digestive tract disturbances. This was apparently the right move, because I am now feeling much improved in that area.

Meanwhile, once again my monthly test results were all deemed to be satisfactory by the Christiana oncologist. So, at my request, he composed and faxed to JDA a no-restrictions work release letter. I have arranged to resume my duties as a full-time employee of JDA, beginning November 1.

I have considered putting this blog on hiatus, until something "interesting" happens, rather than merely report good test results once a month. I'm now considering the possibility that returning to work will provide some grist for this mill. There may be a story here around an abnormal person attempting to resume a normal work life. If that doesn't sound compelling, and this is where the reader and I part company, then I can only convey my appreciation for sticking with me this far, which seems like a very long way already, to me.

September 2010 Notes

This month's test results were the same as those for previous months. No surprises there. Meanwhile, I have been visiting some of the other physicians in my life.

The cardiologist didn't even bother with a fresh EKG; based only on a visual inspection and a simple vitals check, he finally authorized me to return to its owners the supplemental oxygen equipment that had been cluttering up my garage for the past year. Barring some intervening disaster, he doesn't want to see me for another year.

My primary care doc has resumed the mundane tasks associated with, well, primary care: screening me for prostate cancer, checking blood lipids, prodding my lymph nodes. As you may recall, prior to June of last year, she had me on Lipitor for elevated cholesterol; that was in the oncologist's way when he began treating me, so I haven't taken it since. He's completely open to my resuming this therapy, if that's what she decides I should do. But from now on, the myeloma will be the elephant in the room whenever any health-related action is being contemplated for me; she is always going to have to get a green light from the oncologist for whatever it is she wants to do. In the case of cardiovascular issues, she will need to consult with the cardiologist as well.

August 2010 Test Results

By now, you're probably getting tired of hearing this litany: good blood chemistries; no bad monoclonal proteins; somewhat depressed blood cell counts. The Christiana oncologist: "I'm happy." Which seems a bit of an understatement, given the increasingly bubbly demeanor he is exhibiting during my monthly visits to his office. "It's not about me," he says when this is pointed out to him; but he's clearly enjoying the absence of drama in my case. "You were really sick -- a couple of times." And now I'm out of the woods -- for now, at least.

At some point recently, I realized that I had been taking omeprazole for what seemed like forever, and couldn't remember why. The oncologist thinks it was originally to protect my tummy from the ravages of the steroid dexamethasone; but I haven't been taking any of that since before the stem cell transplant, and it was included in the list of medications that I brought home from Johns Hopkins in January. In any case, I am now at liberty to drop it; but if doing so causes problems then I can just take it up again. So I have stopped taking it for now, which leaves me with just the prescriptions for Revlimid and allopurinol, and the monthly shot of Aredia.

I continue to try to strengthen myself against the collateral damage done by the cancer last year. I can now cover two miles on the treadmill in less than 35 minutes. I am gradually increasing the weight I will consider trying to lift and carry. My stamina is much improved. I am hovering in the vicinity of my "normal" adult weight. The pain of fractured ribs and vertebrae is slowly diminishing. I consider myself to be on track to return to work sometime in the fall.

Grandpa Shaffer's "Bone Cancer"

I think I have previously mentioned the fact that not much is known about the causes of multiple myeloma, and that most of the usual suspects don't apply to me. I was never exposed (as far as I know) to Agent Orange. I was never employed in the manufacture of herbicides or pesticides. And so on. There is a genetic component, but again, as far as I know, I am the first member of my family to have myeloma. Or am I?

Some senior members of my family are under the impression that my paternal grandfather was killed by "bone cancer". I'm not sure where this notion came from, but it's very suspicious. True bone cancers are exceedingly rare. Most skeletal tumors are caused by cancers that arise elsewhere and then metastasize. But such tumors don't thus magically become "bone cancer"; a skeletal tumor caused by a metastasized breast cancer, for example, is still considered to be a breast cancer tumor.

The situation is even more misleading where multiple myeloma is concerned. Otherwise reliable medical web sites -- even a few sites dedicated solely to multiple myeloma -- sometimes mischaracterize myeloma as a bone cancer, or as a cancer of the bone marrow. But really it is neither. Yes, plasma cells originate in, and are mainly found in, the bone marrow, but they are also transported throughout the body by the lymphatic system. They are considered to be blood cells, not bone marrow cells. Cancers of the leukocytes that are actually considered to be constituents of the bone marrow, and which thus could be considered bone marrow cancers, are called leukemias. But in multiple myeloma, it is the plasma cells that are cancerous -- not the stem cells, and not the leukocytes that eventually become plasma cells. The fact remains that, when multiple myeloma causes tumors, they usually occur in the bones, thus possibly leading the underinformed observer to conclude that the patient has "bone cancer".

So: Did Grandpa Shaffer really have bone cancer? Or was it really some other type of cancer -- was it, say, multiple myeloma? The answer would, or should, be of more than just casual interest to the other members of my family, given the genetic aspect of myeloma.

So recently I undertook to obtain his death certificate from the Division of Vital Records of the Department of Health of the Commonwealth of Pennsylvania. For a fee, it is possible to obtain a copy of such a document; it can be ordered online. But not just anyone can get a copy of just anyone's death certificate. You must fall into one of the categories of individuals having a particular relationship with the deceased; in my case, "direct descendant". And you must have an approved reason for wanting the document; again, in my case, "medical history" was sufficient (but as an aside, mere genealogy isn't a good enough reason -- I have no idea why not).

My copy of the death certificate arrived in the mail a couple of days ago. Ultimate cause of death: "Metastatic Lung Carcinoma". I'm a little disappointed by this, as it sheds no additional light on my own case. But I'm certainly not surprised.

The Resistance Problem

I thought maybe I should attempt to clarify the resistance problem I mentioned in the previous post.

Unlike most of the more familiar types of cancer, multiple myeloma does not arise in a specific organ, but is systemic in nature. Even if, as in my case, there are tumors, there is no hope of chopping them out and then testing to see if you can convince yourself that you "got all the cancer". You can think of myeloma as being metastatic right out of the starting gate. The cancerous cells are white blood (plasma) cells, which are everywhere in the body. Furthermore, no known chemotherapy can be guaranteed to get all the cancerous plasma cells either; a few are bound to survive the encounter with the chemotherapeutic agent, and if they take it into their heads to begin multiplying, the patient is back where he began -- except that the previous "successful" therapy is no longer a viable option. At that point, the patient and his oncologist must shop for another therapeutic regimen to try.

Some myeloma patients experience this cycle of treatment, remission, and relapse many times. A good illustration of this is a recent Phase 2 clinical trial of Onyx Pharmaceuticals' carfilzomib, which is designed to add yet another option for this type of patient. The trial involved 266 "heavily pretreated advanced multiple myeloma patients". These patients had undergone a median 5 prior therapeutic regimens, involving a median 13 chemotherapeutic agents.

This isn't necessarily my fate. There are myeloma patients who survive many years on the same maintenance therapy, without disease progression. I'm keeping my fingers crossed.

Bone Marrow Biopsy Results

I was finally able to obtain the results of the biopsy done at Johns Hopkins on July 1: "No evidence of myeloma... There is no evidence of an increase in plasma cells."

So, even though it's never wise to claim that one has "beaten" myeloma -- the fact remains that, for most patients, the eventual development of resistance, followed by disease progression, is more or less inevitable -- this is probably as close as I can get to overcoming this disease, and should celebrate it as such. I'll breathe that much easier, though, if I get the same results for the 12-month evaluation, which will happen around the beginning of next year.

July 2010 Tests

On Thursday July 1 we traveled to Johns Hopkins for the six-month stem cell transplant evaluation. The battery of tests done was identical, I think, to that of the sixty-day evaluation done in February: blood and urine tests, and a bone marrow biopsy.

I have experienced the biopsy procedure several times by now, but I don't believe I have ever described it in detail. There is really not very much to it. I am ushered into a small room containing a padded table, and instructed to unfasten my trousers and lie face-down on the table. The biopsy technician pulls my clothing down far enough to expose the right hip. Before each step, he gives brief announcements warning what is about to happen. First comes the application of a lubricant to the area where the needles will go in. Then a shallow local anesthetic is administered: "A little stick, and some burning." Next comes another local, but closer to the bone: "Another stick, deeper this time." The crucial part is of course to get a larger needle into the soft marrow of the hip bone: "You'll feel some pushing back here... More pushing..." Which is exactly the sensation, just as if some blunt object were being pushed at the hip. And then finally: "Pulling now.... Another pull..." This is the marrow being siphoned out through the hollow needle. But I would not describe the sensation exactly as "pulling". I'm not quite sure how to characterize it. I wouldn't describe it as "painful" either, although it is sufficiently unpleasant as to make a glad ending. The closest comparison I can draw, although not really a good one, is with the drilling of an anesthetized tooth. The impression is not as vivid, and yet somehow seems more invasive, as if the center of one's physical being had been penetrated, which in a sense it indeed has been; it's hard to get "deeper" than the marrow of one's bones. A very sensitive person might have the feeling of having been violated in a way, which again is not completely unfounded. In any case, the needle is immediately withdrawn, a patch is affixed to the point of entry, and the patient is instructed to button up and be on his way.

More than two weeks later, the results of this procedure remain unavailable. By contrast, the results of the blood and urine tests were available within a couple of hours. They appear as numbers in a spreadsheet-like report, each "cell" having a colored background, or not, indicating its relationship to the "normal" range of values for that number. A number comfortably in the normal range does not have a colored background; a number in the normal range, but close enough to one or the other end of the range, is "flagged" by having a yellow background; a number outside the normal range is flagged by having a red background. "I am not used to seeing chemistries without any flags," said the Hopkins oncologist, on reviewing my results. Some of the cell count numbers were flagged, but that is to be expected, as my bone marrow is still recovering its normal function of making blood cells (and Revlimid has the side effect of suppressing white blood cell counts as well). But, pending the results of the biopsy, the oncologist is as pleased as can be with my progress so far. He granted me permission to terminate the antibiotic I have been taking all year so far (a good thing, since I was about to run out of that one). He instructed me to consult with the Christiana oncologist on the subject of possibly dropping the antiviral as well. When I return for the 12-month evaluation, assuming all is still going well, I will begin the process of reacquiring my childhood immunizations, all lost in the course of the stem cell transplant.

On July 13, the Christiana oncologist joined the party congratulating me on my progress, and told me to stop taking the antiviral, once I have run out of what I have. As a result, in terms of medications, that leaves me with only Revlimid, allopurinol, omeprazole, and the monthly Aredia IV (plus non-prescription stuff like calcium and low-does aspirin).

One Year After

June's blood test results were similar to May's: Normal chemistries and proteins, somewhat low but acceptable blood cell counts and immunoglobulins. In addition to the blood tests, this month I also got a skeletal X-ray survey, and an ultrasound on my legs.

The comparison of the current skeletal survey with the last one, done in October of last year, indicates that, if lytic lesions can be taken as evidence of the presence of the myeloma, then the disease has more or less been stopped in its tracks. There is no evidence of spreading, for example, to the arms, legs, or pelvis. Although the skull and spine are unchanged and seemingly stable, the ribs show improvement, which comports with the (ever so) gradual reduction of the pain that I have endured in that area.

The ultrasound, taken as a precaution against the threat of blood clots introduced by the Revlimid that I have resumed taking, revealed no such clots.

The oncologist expressed great satisfaction with these results; he appeared as jocular as such a very reserved individual gets. As of this month, in my case he can give himself credit for one year of survival. Survival, where cancer is concerned, is measured from the date of positive diagnosis. This seems somewhat arbitrary, since the patient has clearly already "survived" having the disease for some period of time already by then; but there is really no other way to objectively measure it, since there is no way to determine exactly when the onset of the disease occurred. By June of 2009, I may have had multiple myeloma for six months or six years. In any case, survival, thus defined, is nearly the sole measure of success or failure in the oncological world. The survivor's quality of life, as important as that might be, is too subjective in nature to serve as a scoring mechanism. Moreover, cancer is such a rapacious adversary that the oncologist must be resigned to burying most of his patients sooner or later. He counts a success if he manages to cheat the statistics by some span of time. If he is very good or very lucky, he somehow pushes the patient out onto the long right-hand tail of the life expectancy distribution. In the case of multiple myeloma, the long tail begins around five or six years. So I still have a long road to travel to reach it.

Frankly, I am avoiding using the occasion of this anniversary to indulge in any extensive reexaminations of the road traveled thus far. This strategy for maintaining some kind of emotional equilibrium in the face of -- dare I use what seems an overused term -- horror, has some disadvantages. The worst of it is that I can seem ungrateful for the truly herculean efforts that have been made by many other people (my wife in particular) to keep me from sliding into the abyss. I can only offer a simple apology, and the excuse that dwelling on the events of the past year will do nothing to help me get through the next one. Also, doing so creates a certain feeling, that I would prefer to avoid. It reminds me of the feeling I experienced on emerging from the Holocaust Museum in Washington, when I visited it years ago -- a feeling of inescapable involvement in an enormity that roams the world, devouring souls without justification and without mercy.

Provenge, And Mylovenge

Several weeks ago, the FDA approved for certain types of refractory (i.e. unresponsive to standard treatment) cases of prostate cancer a new "vaccine", brand name Provenge. The reason I'm using the scare quotes here is that Provenge is not a vaccine in the conventional sense; no one who does not already have prostate cancer will be taking Provenge to avoid getting it. The mass media is using the term "vaccine" to characterize Provenge because it's a term that is much more familiar to the general public (not to mention more concise) than is "autologous cellular immunotherapy", and because it serves to convey an important fact about the drug: like an ordinary vaccine, it enables the patient's immune system to combat the cancer. A patient's white blood cells are extracted, are treated with the drug, and are then returned to the patient, having now been "taught" to recognize the cancer cells as things that should be attacked and destroyed. Provenge is the first therapy of this type approved by the FDA for the treatment of any type of cancer.

Therapeutically speaking, Provenge isn't notably impressive. It extends survival by only four or five months, and it doesn't seem to affect tumor progression at all, which is apparently one of the reasons why the FDA had such trouble granting approval for it, finally doing so about ten years after it was first presented. And it will of course be appallingly expensive, thus giving rise to yet another of those "health care rationing" conundrums that we seem to specialize in creating.

But in conceptual terms, one can visualize Provenge as being the prototype for an extremely effective class of future cancer therapies. The immune system's job is to attack and destroy bad guys; cancer cells are bad guys that diabolically pretend not to be; the obvious answer is to somehow make the immune system see through the cancer cells' disguises for what they are, and go git em. That's what Provenge, and its presumed successors, would seek to accomplish.

So what does this have to do with multiple myeloma? Nothing, except that at one time -- ten years ago -- Dendreon, the company that developed Provenge, was working on a vaccine for multiple myeloma, called Mylovenge. Mylovenge was at some pointed granted "orphan drug" status by the FDA (thus qualifying it for certain types of research-related tax credits), and it reached Phase II clinical trials by 2002 or thereabouts. And then.... nothing. I was able to find traces of a clinical trial involving Mylovenge that completed in 2005, but not the results of the trial. There is nothing mentioning Mylovenge on Dendreon's web site, and calls to Dendreon's corporate offices proved fruitless. Intense Googling turned up a claim that Dendreon stopped working on Mylovenge when it became apparent that it would be difficult to manufacture, and that its therapeutic results compared poorly with those of other types of drugs that became available in the meantime -- drugs that didn't require the expensive and cumbersome pheresis process.

In fact, Mylovenge is the tip of a large iceberg of relative failure for cancer immunotherapies. This idea -- that the battle should be fought by the immune system -- as reasonable as it sounds, has proved difficult to implement in practice. Many types of immunotherapies have been developed and tested during the past couple of decades, to little practical effect so far. No doubt a tremendous amount has been learned in the process, but to date this knowledge has not been translated into longer lives for cancer patients. Reading the press around the Provenge approval is attended by deja vu: the potential of the immunotherapeutic approach is set forth in terms almost identical with researchers' promises made ten or fifteen years ago. That's not the researchers' fault, really; this stuff is hard, harder probably than anyone would have guessed at the beginning.

And now, suddenly, the President's Cancer Panel comes out of left field with a report declaring that the environmental causes of cancer have been "grossly underestimated", and recommending that maybe someone should look into this. So at this point, the larger problem of cancer -- where it comes from, and how to stop it -- is still generating many more questions than answers.

This Month's Tests

The monthly routine into which my medical life has settled goes something like this: A few days prior to visiting the oncologist, I have blood drawn for the battery of tests he wants to do. The office visit itself of course begins in the outermost waiting room; eventually I am called upon by a physician's assistant, who weighs me before ushering me into an examination room, where I await my audience with His Lordship. Upon entering, he gives me a glance up and down and pronounces his satisfaction with my appearance; then he jumps onto a computer, brings up my test results, mutters a bit about one number or another, but finally declares his general approval of the aggregate. He inquires about any pain I might be having, but am not. Then I'm up on the table while he listens to my lungs and heart, and gently probes my belly and squeezes my ankles. We talk about whether he needs to write any prescriptions for me. Finally, it's Q and A time, which these days usually is brief, although this month we chatted a bit about the new vaccine recently approved for prostate cancer, and whether there is anything like that being developed for multiple myeloma (but that's a subject that deserves a post of its own). Finally, on the way out, I schedule my next office visit, and a session for an Aredia IV, which ordinarily occurs a day or two later.

The blood tests that are being done fall into one of three broad categories, from my perspective. One category is that of blood cell counts: red, the various types of whites, and platelets. This month, these were all within their normal ranges, except that I am a bit low on red blood cells. This is a side effect of the Revlimid, and is a factor in my fatigue problem.

A second category of tests I think of as "levels of chemicals in the blood", stuff like calcium, sodium, potassium, creatinine, and glucose. Currently these are all in their normal ranges.

The third category is that of proteins and immunoglobulins (a.k.a. antibodies). Oversimplifying greatly, we want to see adequate numbers of the types of antibodies expected to be produced by normal plasma cells, and we don't want to see any of the junk monoclonal proteins produced by defective, cancerous plasma cells. Again, currently the tests are showing more or less the right numbers of the former, and none of the latter. I will continue to take Revlimid as long as this state of affairs continues.

Meanwhile, the monthly Aredia treatments are supposed to be strengthening my bones; this, in concert with suppression of the disease that caused them, should be making some of the lytic lesions on my spine disappear. I haven't had a skeletal survey for awhile, so I will get one sometime in the next month or so, thus giving us a reading on how well I'm doing on this front.

Revlimid In The UK

I have been wondering how I would be faring in one of the socialist paradises possessing a single-payer health care system, such as the UK. Answer: It's not clear, to me.

Here I'm considering solely the position Revlimid occupies in the National Health Service's scheme of things. The determination about whether or not the NHS will pay for a particular therapy in particular circumstances for a particular class of patients is made by the National Institute for Health and Clinical Excellence (NICE). This is what certain former governors of Alaska are referring to when they talk about "death panels": inevitably, NICE will decide that a very expensive cancer drug that, statistically, extends the life of patients by only a few months is not "cost-effective", and that the NHS should not pay for said drug. Thus, some small minority of patients who would in fact have had their lives extended by many years had they gotten this drug will not get it, and will die very prematurely. Of course, on the other side of the coin, we have the problem of limited NHS resources: any money spent on said drug, mostly to very limited effect, cannot be spent on other things; if spent on these other things, conceivably many more people could have their lives extended or improved. This is what the term "cost-effective" is supposed to mean in the first place; but you see the problem, which is that the NHS must explicitly ration health care resources, and politically (morally?) it must do so on some basis that appears to be at least vaguely objective, which it calls "cost-effectiveness".

I was surprised to learn that the NHS does not negotiate drug prices; isn't this supposed to be one of the major advantages of single-payer systems? Instead, NICE must be approached by the provider of a proposed therapy with a pricing model under which the provider would be compensated by the NHS; NICE then makes a binary yes/no decision on the cost-effectiveness of the therapy, based on the proposed pricing model, and on whatever scientific evidence is available regarding the therapeutic efficacy of the therapy.

Until early 2009, NICE apparently was opposed to approving Revlimid for any purpose whatsoever. Then Celgene, the maker of Revlimid, offered a deal: if the NHS paid for the first two years of a patient's Revlimid treatments, Celgene would pick up the tab itself after that, for as long as the patient lasted. Based on this proposal, NICE reversed itself to some degree, approving Revlimid for multiple myeloma patients who had received two prior therapies. In other words, my usage of Revlimid as front-line therapy would not have been paid for by the NHS. Perhaps my current usage as maintenance therapy would pass muster, depending on exactly what is meant by "two prior therapies"; would induction therapy count as one therapy, and the stem cell transplant as a second? I'm not certain. I'm also not certain whether NICE considered Revlimid for front-line therapy and turned it down for that, or whether this usage was not even on the table.

And this reminds me of an anomaly in my own case: technically, Revlimid is not approved as a front-line therapy by the FDA either; yet I got it for such, and the medical insurance company was just fine with that. The US rations health care resources as well, but no one is allowed to admit that this is both necessary and inevitable, and should be properly called by that name; it is currently carried out based on the seemingly arbitrary policies of whatever medical insurance provider one happens to have, or on the fact that one has none. News flash: We already have "death panels" de facto. But no one calls them NICE.

The "Chemo Parity" Issue

This Washington Post article discusses the "chemo parity" problem, which was not addressed by the recently-passed national health care legislation. The new oral chemotherapy drugs are very nice, but they also tend to be very expensive, and often are covered inadequately by drug plans, thus forcing patients back onto IV chemotherapy drugs, which are usually covered by medical plans, rather than by drug plans. And of course things get much uglier in those cases in which no IV drug is available, or the patient's disease has become IV drug-resistant.

There is a paragraph in here that talks about multiple myeloma patients who take Revlimid, which is described as being required "after an IV drug stops working". I took Revlimid last year as stem cell transplant induction therapy, and I'm taking it now as maintenance therapy; I have never been given an IV drug that "stopped working". Either the Post or its source for this part of this story is behind the curve on how Revlimid is currently being used in multiple myeloma cases.

A Reluctant Teetotaler

As I believe I mentioned as far back as the very first post of this blog, I possess a cellarful of wine, with which I now maintain a troubled relationship. Of course, when I first became ill, the bottles nestled comfortably unmolested in their bunker for months on end. By Thanksgiving, I was able to have a glass or three with dinner, but almost immediately thereafter the stem cell transplant campaign began, and I once again had to forego the pleasures of the grape. But when I returned to Johns Hopkins in February for my 60-day follow-up, the oncologist gave me permission to take them up again, in moderation. So after a decent interval, I tried to resume, but the experiments have not gone very well. Something about alcoholic beverages upsets my stomach and causes me to feel nauseous. I have tried to gauge the minimum amount that causes these effects, but I am unable to get reliable results. So I am calling a halt to the trials for now.

I am assuming that this is caused by some interaction with one or more of my current roster of medications. For now, I am going to guess that I need more time to re-acclimate myself to the Revlimid, so I will try again in another month or so. If it turns out to be down to one of the antibiotic or anti-viral drugs then I have longer to wait. If it turns out that something has permanently changed, and I am no longer physically capable of tolerating the stuff, then you can just shoot me.

I'm Tired of Feeling Tired

My low-dose maintenance chemotherapy began on March 24. Two weeks into the first cycle, I'm getting used to Revlimid again, after not having taken any since sometime in November. The side effects are mild: a little tingling in the fingertips; some constipation and general gut disturbance; a bit of rash on the face. Thankfully, there are no muscle spasms, probably because dexamethasone is not part of the equation this time.

Now that the immediate existential threat has retreated (although it continues to lurk like a black cloud just over the horizon), I am reduced to focusing on what seems, by contrast, almost trivial. For example: The most frustrating aspect of my current situation is the unpredictable duration and intensity of fatigue and weakness. Some days I wake up, having slept comfortably through the night, and after performing my morning ablutions and having breakfast, feel the urge to return to bed. But if actively resisted, the feeling often simply dissipates. I can now walk two miles (cane-assisted) without stopping to rest en route, and often without even feeling the need to rest afterwards. In fact I often feel better at that point than when I began. I still crash for naps at odd times of the day, but not as often as before. On the other hand, anything involving lifting and carrying any weight, or just crouching to reach something low, seems to take an inordinate amount of energy. It's not as bad as it used to be, but it still seems to be the single most prominent factor standing between me and a feeling of normalcy (or as close to normalcy as I'm likely to get). I'm considering returning to physical therapy to work this problem.

The Feds Think I'm Disabled

This past week I received from the Social Security Administration notification that it had come to the conclusion that I am indeed disabled, and have been so since June 2009. This will result in monthly payments from the SSA, but the monthly private LTD insurance payments that I have been receiving since October will be reduced by a corresponding amount, so financially speaking, this event is a wash.

The other benefits are somewhat longer-term in nature. The first is that I will become eligible for Medicare coverage in November 2011. That would be several months beyond when my current COBRA coverage would end. But I may be eligible for an extension of that coverage; I must have a little dance around that issue with the company administering the COBRA plan. Of course I hope to return to work before any of these dates matter, but I must make sure that the issue is resolved in advance, in case my hopes do not come to fruition for some reason.

Second, the SSA provides for a "trial work period", lasting nine months, during which my disability status would remain unchanged, and the associated payments would continue as usual, even while I was working. If, before the end of the trial period, I found that I was unable to sustain the effort to work normally, then I would remain with the original disability status. The astonishingly good idea is to allow the disabled person to determine whether or not he is truly capable of leading a normal work life again by actually doing so, without having to completely disavow his disabled status all at once. I'm not sure how the private LTD insurance would work in such a scenario; that is something I will have to research.

Third, if the disabled person continues to work beyond the end of the trial work period, but then is eventually (within five years) forced by his condition to again stop working, he can request "expedited reinstatement", which if granted would cause payments to resume immediately, without having to begin with a new application all over again. This seems tailor-made to fit precisely the circumstances of the typical cancer patient who has achieved a precarious, possibly impermanent remission, whose disease could rise up again at any moment, forcing the patient back into a debilitating regime of rough treatment at the hands of the oncologists. Again it isn't clear how the private LTD insurance would work in this instance.

LLS Coupon

Using this coupon at Gap, Banana Republic, etc. benefits the Leukemia and Lymphoma Society (which also covers multiple myeloma).


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Maintenance Therapy

On Wednesday I paid a visit to the Christiana oncologist, who concurred in all substantive respects with the conclusions and recommendations of the Hopkins oncologist. So, beginning immediately, I will once again take Revlimid three weeks out of four, unless and until testing indicates that the disease is not being restrained by the drug. Both oncologists are basing their belief that the transplant was successful primarily on the (not quite total) absence of the protein that typically shows up in the blood of myeloma patients (although in my case that signal was never particularly strong in the first place). The results of the hip bone marrow biopsy are taken as evidence that the disease has not spread, rather than saying much about whether or not it has been rolled back, since the original diagnosis was never based on such a biopsy in the first place. On such seemingly slender threads do I now teeter above the abyss.

It so happened that this week the local chapter of The Leukemia and Lymphoma Society (which also covers myeloma as a related hematological malignancy) sponsored a seminar, held at the University of Pennsylvania, explaining to patients how new treatments for these cancers are developed and approved, including the clinical trial process. So on Friday morning Huong and I traveled to Philadelphia to attend this seminar, the better to prepare ourselves for the possibility that a clinical trial could be in my future. Apparently, in spite of its relative rarity, multiple myeloma receives some pretty intense attention from the research community (the NIH's clinical trial registry has more than a thousand entries for myeloma), probably owing to its relation to the immune system, which is a very hot research topic generally. I came away from this seminar a bit more comfortable with the clinical trial concept, although I can't say that I developed any sort of enthusiasm for it, especially given the possible cost- and travel-related ramifications involved. The health-related risks I'm pretty sure I could handle.

At Last, Some Transplant Results

As you may recall, for the past couple of weeks I have been languishing in a kind of oncological purgatory (or is it a limbo?), waiting to hear what the Hopkins oncologist thinks is happening with the myeloma in the wake of the stem cell transplant. When I didn't hear anything from him for a week after the 60-day followup tests had been done, I sent him a query via e-mail, which resulted in an out-of-office response saying that he had left town, might not be able to respond to e-mail in a timely manner, etc. This was followed by dead silence, until today, when I at last received a nearly ecstatic missive from him, the main points of which are the following:

1. He cannot recall seeing such a good response to a transplant in a myeloma patient. He thinks the tumor is completely cleared. I am not sure what led him to this conclusion, since the tumor itself was not biopsied, so I intend to interrogate him further regarding the evidence and reasoning behind this assertion.

2. His absence was in fact due to his attendance at a conference focused on bone marrow transplants, and amongst the presentations was one describing a recently concluded clinical trial, sponsored by the National Cancer Institute, that tested the efficacy of Revlimid as post-transplant maintenance therapy for multiple myeloma patients. More than 500 patients were randomly plied with either Revlimid or a placebo, over a period of 4-1/2 years. Half the patients getting the placebo started getting worse again within a little more than two years, whereas by the end of the trial, fewer than half of the patients getting Revlimid showed this "disease progression". These results are said to be "highly statistically significant".

3. His prescription, therefore, is that I should go on Revlimid maintenance. Of course this is a decision that must be made in consultation with the Christiana oncologist, and will be a major topic of conversation when I visit the latter next week. My understanding of "maintenance therapy" is that it would continue indefinitely, unless and until significant "disease progression" was detected, at which point presumably measures of some more drastic kind would have to be taken.

The 60-Day Evaluation

On Thursday 18 February we traveled to Baltimore for my 60-day stem cell transplant evaluation at Johns Hopkins. Blood, urine, and bone marrow were extracted from me for testing. Eventually, we ended up in the office of the Hopkins oncologist, for the first time since the original consultation, back in October. Apropos of this, Huong mentioned our surprise that we had not seen him during the entire course of the transplant, to which he responded that we should be glad about that, since he does not become personally involved unless something goes very seriously wrong, and the patient is at risk of imminently expiring.

The good news is that all the relevant blood chemistry and cell count numbers are in their normal ranges, or at least close enough for comfort. He cleared me both for air travel and for wine consumption. The former permission was granted with the caveat that any immunizations required for overseas travel would likely not work so soon after the transplant; the latter was of course accompanied by the usual boilerplate about not indulging to excess and so on. The results of the bone marrow biopsy will not be available until sometime later this week.

When I questioned him regarding the efficacy of these tests, in view of the fact that they were insufficient on their own for my original diagnosis, he surprised my by saying that one major reason for doing them was to detect any remaining chemotherapy-inspired toxicities that might have to be dealt with at this point. This was the first I had heard of this. In my case, so far, there is no evidence of any such toxicities. But with respect to my point, he didn't really seem to have much to offer (in my opinion, and also in Huong's). Prior to the transplant, one of the more esoteric blood protein measures was a bit elevated, but many patients exhibit much higher levels, and so for them any post-transplant reduction in this number would provide more reassurance than it does for me. So I am still puzzled about how exactly we know what effect the transplant had on the cancer itself. The unsatisfactory (to me) answer seems to be that we really don't know, and the path forward will be to continue testing and watching for symptoms. So what, in the end, was the justification for doing the transplant in the first place? Apparently, simply this: Statistically, patients who undergo "successful" transplants (where "successful" is defined as not killing the patient) live a few years longer than those who don't.

Another disappointment came when we talked about my damaged skeleton. He agrees that bisphosphonate therapy (i.e. Aredia) should be resumed, but he expressed skepticism that it would do anything to roll back any of the damage already done. As things stand I am at increased risk of fractures, and the Aredia will reduce that risk by strengthening the bones, but he doesn't think that it will cause new bone to grow to fill in the existing lytic lesions. This is a subject that I need to revisit with the Christiana oncologist.

I attempted to draw him out on the subject of whether or not he thought I would need long-term chemotherapeutic maintenance therapy, but he would have none of it, declaring that this was really a subject to be addressed by the Christiana oncologist, whom I will next see in March.

A Miscellany

Not much to speak of going on right now, so I have worked up a collection of items that do not, individually, seem to warrant posts of their own.

I may have mentioned that, soon after the transplant, my hair, which I previously had cut very short but not shaved, began coming out in clumps. One had only to touch it to make it fall out. It was flying around everywhere. So one day, after being dismissed from the IPOP clinic, instead of returning to the apartment as usual, we instead sought out the local outpost of Image Recovery Centers, which specializes in helping cancer patients deal with their appearance issues, and which is located right there in the cancer center. I wasn't interested in their collection of wigs, but they do have a little salon where one can have one's head shaved. I don't know whether the all-female staff is selected for, or is just trained to exhibit, what appears to be the defining personality trait of the place: a soothingly calm demeanor so reassuring and relaxing that one is caused to feel deeply at ease, if not to fall asleep. Once I was shorn, we got out of there before we had the chance to do anything foolish, such as purchasing one of the New Age-y CDs or aromatherapy kits on offer. At this point, I am getting a little bit of peach fuzz on my skull, but I still must wear a hat or cap, even indoors, to avoid feeling a draft up there.

In the first several weeks after the transplant, I had some problems with short-term memory loss. Huong would speak of some recent incident as if she expected me to know what she was referring to, and I would be able to come up with nothing about it, as if it had never happened. This was of course disorienting and frightening, but this symptom is apparently both relatively common and short-lived, and has faded with time. But now I am noticing an interesting symptom involving longer-term memories. I find that I sometimes project my latter-day damaged self into memories of past incidents that actually occurred (I think), but that predated the onset of my illness. Whenever I realize that I am doing this, and attempt to repair the memory by replacing the "sick" self with the original "well" self that surely belongs to it, I sometimes find I am unable to do so, and I begin to lose confidence in the memory as a whole.

Whatever the degree of success that has been attained by the transplant, it cannot have repaired the many cancer-caused lytic lesions peppering my spine and ribs. The Christiana oncologist has indicated that it is his intention to eventually resume the bisphosphonate therapy (probably consisting of monthly Aredia IVs, as before the transplant) as a countermeasure. This reminds me of an incident that occurred the last time I received a dose of Aredia. I was seated next to a man who turned out to be a 10-year multiple myeloma survivor. He was first diagnosed when he was about my age, and endured a successful bone marrow transplant. He is now on maintenance therapy that is nearly identical with my induction therapy (Revlimid plus dexamethasone plus Aredia); but unlike in the case of my induction therapy, he is stuck with taking these drugs continuously, as far into the future as anyone can now see. So for me, his story was composed of both encouragement and discouragement, in equal parts.

Another Reunion

On Friday I had my first consultation with the cardiologist since before the transplant. As you may recall, he nearly miraculously saved our bacon (or at least the laboriously constructed transplant schedule) by successfully allaying, at almost the last possible moment, the Hopkins oncologist's fears arising from the irregular EKG that I produced in the pre-transplant qualifying round. This time, he gave me as close to a completely clean bill of health (well, from a strictly cardiological point of view) as I am ever likely to get. He confessed to being "really worried" about me, back when we first encountered each other, when I was in the hospital battling pneumonia; recalling what now seems like ancient history, he was referring to the specter of amyloidosis caused by the myeloma doing permanent damage. Now, with the various symptoms that then concerned him -- shortness of breath, low blood pressure, low blood oxygen, abdominal edema -- a relatively distant memory, he sees no reason to resume dosing me with furosemide, which I had continued to take right up until the transplant team discontinued all of my medications in favor of their own. Barring some problem, he doesn't want to see me again for six months.

Feelings...

The transplant is now six weeks in the past, and I have been home for three weeks, and it is probably time once again to provide a synopsis of my physical and mental states.

As I mentioned earlier, my blood cell counts seem to have recovered, and I am pretty much recovered from a recent mild cold, which means that the immune system must be working properly to some degree. The chemotherapy-related symptoms all seem to have largely dissipated -- all, that is, except for the intermittent fatigue. This is frustratingly inconsistent in its effects. One morning I may awake thinking that I should take Mount Everest by lunchtime, and then the next morning I may have to talk myself into just getting out of bed. In any case, unless the weather is very bad, I try to get in a walk each day. The interesting thing is that, once I get moving, any fatigue I happen to have been battling against that day seems to fall away. I have been slowly pushing out the distances on these walks; at this point, I think I am covering about a mile. Mind you, I am not covering it very quickly; it usually takes 35 to 40 minutes. Also, as I come into the home stretch, I begin to tire, which causes me to begin leaning more heavily on my cane, which in turn causes my back to hurt. So although it seems to me that I'm gaining strength and stamina, I still have a long way to go. In particular, lifting and carrying anything of any weight at all seems inordinately exhausting. By now I'm used to climbing stairs without fear, but that seems to take a lot of effort as well. If I perform some series of tasks of apparently no great difficulty, such as, say, first climbing the stairs to retrieve a new light bulb, then climbing a step ladder to perform the replacement, then putting the ladder away, I have to conclude the operation by lying down for a little while, to recover. I don't consider this normal, and it's something I have to work my way past, eventually. If I can't seem to get there on my own, then I will return to physical therapy.

My appetite is probably still a bit short of being completely restored, but it's very good. I have gained about five pounds since I returned home, which means I'm still about fifteen pounds down from my "normal" pre-illness weight.

As long as I'm careful to avoid taking any long naps in the afternoon, and to avoid caffeine in the evenings, I sleep well at night. If I wake up to go to the bathroom, I usually go right back to sleep.

I'm trying to resume some of my old household jobs, such as paying bills, and running loads of laundry (which is another example of a physical task that takes more out of me than it should).

I didn't so much as turn on my work computer for two solid months, beginning with the preliminary transplant steps, but this week I finally did that (and was confronted by a mountain of 1600+ e-mail messages). Depending on my energy levels, I am going to try to ease myself back into that world over time -- assuming that the oncologists, the jealous gods of my world, don't suddenly project me into some fresh hell, based on the alchemy of their tests.

A Reunion

This past Friday I enjoyed my first consultation with the Christiana oncologist since before the transplant. He was armed with all the material relating to the transplant sent to him by Johns Hopkins, plus a couple of sets of blood tests run since I returned home, a week or so apart. He is happy with my blood counts -- so happy that he sees no reason for me to undergo any further testing in this area until after my 60-day evaluation at Hopkins, which has been scheduled for 18 February. He doesn't want to see me again until then, either. Of course, in the meantime I'm to alert him immediately if some infection evades the antibiotics and antivirals I'm now taking daily, and I begin to run a fever; I could still be in serious danger if something like that were to happen.

As if on cue, this past weekend I began to exhibit some of the symptoms of a classic head cold: a mild sore throat, followed by serial sneezing and draining sinuses, and a bit of random coughing. So far, my immune system seems to be handling the matter as if nothing ever happened to it. My temperature hasn't done so much as edge above normal. Obviously the situation bears continued close surveillance, but so far there seems to be practical evidence that the transplant worked -- at least the stem cell reinfusion part of the transplant.

As for the chemotherapeutic part of the transplant, that is another matter altogether. I received my schedule for the 60-day evaluation, and it seems to consist of a battery of blood tests and a biopsy of bone marrow taken from the hip. I solicited the Christiana oncologist's opinions about this plan, reminding him that, in my case, he had been originally unable to arrive at a definitive diagnosis with almost exactly the same set of tests; such a diagnosis was eventually based primarily on a biopsy of material taken from the spinal tumor. He conceded the truth of these assertions, but declined to offer any possible alternative testing plans; clearly, he thinks this particular ball remains strictly in the Hopkins oncologist's court. So, I will have to make the Hopkins oncologist educate me about how exactly it is possible to tell what if any effect the transplant had on the cancer itself, since right now I am frankly lost on that score. I don't think I can wait until my February visit to begin warming him up for this. He may come to regret having given me his e-mail address; certainly the Christiana oncologist has been careful not to make that mistake.

Homage To A Caregiver

At the moment, I'm in a sort of hiatus period. The team at Johns Hopkins doesn't want to see me again until the middle of February, which is when they will begin to try to determine the degree of success, vs. the cancer, that should be assigned to the chemotherapy part of the transplant. Meanwhile, the Christiana oncologist will be monitoring my recovery, mostly just looking at weekly tests of blood counts and electrolyte levels. I once again lost ground on strength and stamina in the course of undergoing the transplant, so recovering and advancing those will once again be my main job for awhile, alongside taking the antibiotics and antivirals that have been assigned to me. So I am at liberty to consider some things that might have fallen by the wayside in the heat of battle.

One thing I should do is try to provide some idea of what Huong had to cope with while playing the mostly thankless caregiver role in my transplant. I think I mentioned in an earlier post that, until fairly recently, stem cell transplants were inpatient affairs to a much greater degree than they now are. Formerly, there really was no "caregiver" role, until the patient had been discharged to go home, after which the caregiver's main responsibility was to watch the patient for signs of infections that needed to be nipped in the bud. But as transplants shifted more and more to being done outpatient, the caregivers awoke to discover themselves having to be 24/7 nurses for persons they thought they knew, but who were now rarely themselves, and not in good ways.

In some ways, our situation in Baltimore was nearly ideal. We had a very nice apartment in a building right across the street from the cancer center. If I was feeling so ill that even this seemed to be too far away, we could take one of the shuttle buses that ran hourly between the buildings. The apartment had its own refrigerator and cooking facilities, and its own clothes washer and drier. The main bedroom could be closed off from the rest of the apartment if necessary.

But for some time, Huong had trouble keeping me fed, no matter what she cooked, because of my growing nausea and mucositis. Nothing smelled or tasted good to me for awhile; or, even if it did, I would have trouble getting it down.

In addition to of course our clothing, we were responsible for laundering the bed linens. The machinery was of the stackable, small-volume type, meaning that Huong pretty much had to do at least some laundry daily, especially after my diarrhea began and then became progressively less controlled.

For awhile, the chemotherapy seemed to affect both my short-term memory and my ability to focus on the details of tasks. For example, the daily pilgrimage to the IPOP clinic involved getting myself fitted out with the necessary outerwear (hat, gloves, etc.), my surgical mask, and my cane, which seems slam-dunk easy; but for the first couple of weeks after the chemotherapy, I would occasionally forget one or another of the necessary items, not realizing that I was missing anything until we had reached the main lobby of the apartment building, or the sidewalk outside, thus requiring Huong to return to our room to fetch the item (requiring me to do this myself, while perhaps serving justice, would have taken too long).

But possibly the hardest part of Huong's job in Baltimore was simply grinding through the daily routine: repeatedly shoving the big, sick guy around to where he needed to go, more or less on time; making sure he wasn't run over crossing the busy intersection on the way to and from the cancer center; lugging the bag of medications and other stuff that we were supposed to take to the IPOP clinic each day; trying not to be overcome by boredom while awaiting my daily test results; asking the questions that I was too sick or too tired to ask; waiting in line for me at the pharmacy; flushing my catheter twice daily; wrapping up my catheter dressing for showers; and on and on.

If you had to pick the most important aspect of her involvement, though, you would choose the element of moral support. Holding me when I was under violent assault by the side-effects; firmly grasping my arm as we crossed the icy street; rounding up drinks for me when the nurses seemed too busy; presenting a reassuringly familiar presence when I was otherwise surrounded by strangers in the inpatient ward; walking alongside as I dragged my IV pole around the corridors for exercise; being a beacon of the normal in what often seemed a maelstrom of the abnormal. These seemingly simple things, combined, probably prevented me from disintegrating altogether at some point. As my moment of peering into the abyss begins to recede into the past, I'm pretty sure I will never find a way to repay her for them.

Back In Avondale

I was formally discharged by the Johns Hopkins IPOP clinic on Thursday. The whole thing could not have been more anticlimactic. Since I no longer had my catheter, there was no attempt to draw blood for testing; only my vitals were taken, after which I and perhaps seven or eight of my fellow patients and our caregivers were herded into a conference room for our final debriefing. This consisted mostly of a review of the "life after the transplant" materials that I described in the previous post. The content of these materials varies with the precise nature of the procedure one has undergone; the allogeneic transplant patients for example received stuff about Graft Versus Host Disease (GVHD) that was entirely absent from my package. After this session, there was nothing left to do but to just go home; we arrived here in the early afternoon.

I have a couple of additional observations about the transplant procedure that I'd like to record here, that I'd prefer not to forget.

The entire transplant procedure was carried out with minimal involvement by MDs. I encountered MDs in the initial consultation; at the consent signing; at the catheter installation; and daily (but very briefly), when I was an inpatient. On Christmas night, I was converted into a inpatient by the after-hours on-call IPOP MD. But otherwise, all the work was carried out by RNs, nursing assistants, and various medical technicians. Although the RNs had all received special training in oncology, there is no specific certification around this, as there is for example around anesthesia (an RN must be a CRNA to carry out anesthetic procedures). The daily outpatient show in the IPOP clinic was run by a Certified Registered Nurse Practitioner (CRNP). I have to confess that I haven't really figured out CRNPs yet; the legalisms around them seem to be changing as I write this. But one significant power they do possess is to write prescriptions. Nearly all the medications I received in the course of my transplant were prescribed by the CRNP.

I was rarely seen by the same RN from day to day. Each day, upon arriving in the IPOP clinic, I would sign in, and then consult a whiteboard carrying the day's patient-RN assignments. Furthermore, the RNs often worked long shifts, in which case they wouldn't be present on consecutive days. And they were also rotated between the outpatient clinic and the inpatient ward. However, they apparently had their patient status recording system down cold, as I saw few if any problems relating to the loss of information, or the introduction of misinformation, about my case occurring because of the endless hand-offs. In the end, though, there were very few RNs we felt we knew well enough (or could find) to say "goodbye" to before we left the IPOP clinic for the last time. As we departed, the IPOP machine continued to click along, seemingly oblivious to our existence.

Partially Unleashed

This morning, after getting blood taken for testing for the umpteenth time, my catheter was removed. All I have to show for it now is a dressing that will be removed in a few days. The procedure was substantially less involved than was the installation: basically a firm tug, and it was all over.

I'm not exactly sure what life is going to be like for me in the short term, once we have returned to Avondale on Thursday. The materials I have been given so far touch on the following points:

I'm expected to visit the Christiana oncologist once a week for the first month, then biweekly for the next couple of months, then once a month going forward. He is supposed to apply more or less the same tests that I have been getting in the IPOP clinic, and topping me up with electrolytes and/or blood as required. I'll be getting deeper tests (bone marrow aspirates, X-rays, CT scans) on my return visits to Hopkins (60 days, 6 months, 12 months).

Even though my counts are back to normal, my immune system will not really be completely restored for another 6 to 12 months. I will continue to be vulnerable to certain types of infections. I will continue to need to wear N95 respirator masks in certain situations. Crowded places will be particularly problematic; I will have to regard airline travel with grave suspicion.

My childhood immunizations have been eliminated and will require restoration. My immune system won't be ready to begin the process for another year, though, and I won't be able to get any live vaccines for two years. I will be particularly vulnerable to VZV (Chicken Pox / Shingles); I will have a 40% chance of getting a VZV-related illness at some point.

I am likely to continue to struggle with fatigue for another year. Progress will not be monotonic; I will have bad days following good days.