Told you so

Anyone waiting for an update on the lab values (and I have it on good authority that there is at least one such person) can now relax: the results are in.

Liz and I are working on relaxation in Edisto Beach, SC. It's a nice place, quiet for a beach town in the Southeast (= not a Spring Break destination). Lots of dolphins and pelicans to watch. A shame that I seem to have a problem with shrimp, but otherwise the seafood is good (though invariably fried). There is supposed to be a large native population of venus fly traps, pitcher plants, and the like, and even an island nearby with a feral population of rhesus macaques, which we hope to visit. We even have a view of the sunsets across St. Helena Sound. This was today:

Pretty sweet, until the no-see-ums started in.

But anyway, the labs. Here's the updated chart.


Kappa is still on its downward trend, maybe close to leveling out. Lambda is back to its previous level, apparently. The ratio is now 2.45. That's down from 2 months ago's 2.58, but not nearly as cool as last month's 1.11. These are results from two different labs, and without all the repeated measurements I would certainly be inclined to trust the Mayo 1.11 over the Baptist (Louisville) 2.45, but I don't have any specific reason to do so. I have plenty of results from Louisville now, and maybe enough from Mayo, to see if there is any consistent difference in results between the two. There are lots of possible reasons the results might differ, especially for the low-concentration lambda. Another reason to step back from each month's results and look at the bigger picture.

Off topic (sort of)

So I'm going to have to go see the dentist, I guess. It's not that I have any tooth pain, though the gums are receding a bit--it's just that a good cleaning would be nice, as long as the hygienist doesn't get overly aggressive with the floss. I remember describing a session ~20 years ago as having been "flossed within an inch of my life" and that might even be almost true now if it happened again. Also dentists seem to hate Zometa (a bisphosphonate that helps keep my bones from eroding) because it can cause horrible jaw necrosis if too much is given for too long. So I will have some explaining to do, but I would like to get the teeth cleaned.

The point is that even last year, going to the dentist seemed silly and pointless. I've been certain that, whatever their flaws, my teeth were going to outlast the rest of me. You could argue that maybe this reflects my bias as a former mortuary site archaeologist (trust me, really they do keep very well, for thousands of years or more, depending on geological conditions). In fact, everything except the cancer faded into the background, especially anything health-related.

My heart, for example. Or my arteries and their contents. It seems that my cholesterol (specifically low-density lipoprotein, or LDL) has been creeping upwards in the last few years. Last year I would not have given it a second thought. This year, with things looking good, it's worth at least a little bit of thought. And there's an interesting complication with myeloma: it seems that the tumor cells themselves consume LDL, so that people with advanced MM tend to have very low LDL, and low LDL is correlated with worse survival (if you have MM). So it might be that my rising LDL is another sign of the myeloma being under control. It's probably not only that, though: high LDL could kill me all by itself.

I raised the question of taking a statin with my hematologist a couple of weeks ago, because I've read a couple of papers indicating that statins reduce the risk of death in myeloma patients, results that reinforce the idea that the tumors are competing for LDL. In fact, 10 years ago there was a lot of research built around the idea of using statins to treat myeloma--which mostly dried up when other drugs such as thalidomide and proteasome inhibitors emerged as game-changing therapies.

So, the question is simple: should I add a statin to the already-impressive list of medications? The answer is not so simple. The U.S. Preventive Services Task Force (USPTF) guidelines say that  I should have a 10% chance of dying from heart disease or stroke in the next 10 years in order to make low-dose statins worth bothering with. They calculate my risk at 5.5%, not taking the myeloma into account, of course. So really the absolute risk for me of dying from heart disease or stroke in the next 10 years is much smaller than 5.5% (because the risk of dying from myeloma is so large [~ 100%] , the risk of dying from anything else has to shrink). But will the statins reduce my risk of dying of myeloma in the next 10 years? Probably not nearly as much as just keeping up with the many new myeloma drugs that have become available in the last few years.

But I will try to work at keeping the LDL down with diet and exercise, at least. Apparently the tumors like cheeseburgers and fries. I don't eat a lot of cheeseburgers, but maybe I could cut down on the fries.

Rational

Just back from a follow-up visit to Mayo. It's indicative of the moment that we expected so little, and felt so beset on other fronts, that Liz and I decided that this might as well be a solo visit--fly straight to Rochester, do the medical stuff, and come home the next day. And do that for the first time without Liz alongside. The strangely prolonged winter provided additional motivation, since we didn't want to drive while snow was still falling in Kentucky, never mind what might be going on in Minnesota. It hardly seemed to matter that I'd rescheduled the visit from February to April--the difference in weather was subtle, at best.

Typical of a Mayo visit, I arrive the evening before because the first appointment is early the next day. It's still light outside, and I find my hotel is a bit farther from the clinic than I had intended. But the weather seems OK, and I take an early evening walk with an eye toward walking the next morning. It's good--mid-30's and some of the snow is melting . . . never mind that this is April, I can deal with this.

My first "appointment" is at 6:45 AM. It's really just to stand in line for blood draw, but the line gets long as the morning progresses, so I don't want to be too late. The hotel offers a shuttle at 6:00, but that's a little early in my view, given that I'd be arriving at 6:10 at the latest. Also there is snow falling and winds around 30-40 mph. Walking is out, I take an Uber.

I have a couple of hours to kill between phlebotomy and the doctor visit. One interesting feature of the Rochester campus is the extensive "subway" system connecting many downtown buildings with the clinic. I discover several new subterranean passageways, many with shopping opportunities (although few of these are open at 7:15 AM). It turns out that it is possible to walk from your fasting LDL blood draw straight to Dunkin' Donuts without going outside into the horrible maelstrom (but you can walk!). I wouldn't say it was easy, as it took me 3 years to figure this out. After breakfast (not from DD), I find a place where I can buy a new belt for less than it would cost me (via Uber) to recover the belt I left behind in the hotel.

One of the best things about Mayo is that your lab results are posted in real time as they are read. By the time I'm eating breakfast I can review my cell counts (all fine, platelets and red cells still a little low, but just where they've been parked for the last two years), and basic blood chemistry (totally unremarkable).

By the time I'm in the exam room, the number I've been waiting for shows up. It's the ratio of kappa/lambda protein in my blood. It's been trending downward since my stem cell transplants, from a high in the 100's when I was first diagnosed, to 2.6 a couple of weeks ago. The ideal is 1.0, because for patients like me the kappa protein is the one produced by the tumors, while the lambda protein is produced by normal plasma cells. There are also presumably normal plasma cells making kappa, in about the same proportion as the the lambda-generating cells, so if the ratio is close to 1.0, the tumors are effectively silent (not gone, just not causing any major mischief).

Amazingly, the ratio is 1.1. My doc comes in moments later, and I have the rare experience of telling her the good news. It's a nice moment, big smiles, let's keep doing what we're doing. The Wylie Coyote image (off the cliff, not yet falling) remains, but the impending fall seems farther off now.

For you data fans out there (anybody?), here's a chart of the kappa and lambda numbers post-transplant.

Something's funny here. The kappa number keeps falling, as we want it to. The lambda number has been very stable, and lower than normal, the whole time. Because the chemotherapy, in part, depresses lymphocytes in general, it's not surprising that the lambda number, representing the activity of normal plasma cells, is lower than the ideal. In the last two weeks, it seems, the lambda protein has doubled, while the kappa has dropped a bit, so my ratio of 2.6 from March 15 has become 1.1 on April 6. Is this real?

Probably not. Every measurement carries some unknown amount of error, and the most unusual- looking measurements are much more likely to be in error than are those that fall in line with other observations. We'll see in a few weeks, but I'll bet the next measurement will put the lambda back down a few notches, putting the ratio back up around 2 or so. In the end, it probably doesn't matter much--the news is still good.

Miscellaneous

In these days of welcome slow news on the cancer front, I mostly wait to post until some theme emerges. Themes are emerging more slowly than springtime in Louisville right now (last year the turtles were out in the creeks by mid-February, this year we can barely scare up a daffodil in mid-March), so this post is just a place-holder in case anyone might worry that silence might be a bad sign. I have blood work coming up this afternoon, but no particular reason to worry that the news will be much different. I've even postponed a follow-up appointment at Mayo till April because everything has been so quiet (also because I didn't want to go to Minnesota in February. No turtles up there).

So a few pieces of news:

1) housekeeping--I'm embarrassed to say that I found some comments going back to 2016 that I hadn't seen. I've posted them (except one that seemed to be advertising some skin care product), and will try to be more vigilant in the future. I'm supposed to get emails notifying me of comments to review, but apparently not all of them get through.

2) family--my mother is recovering well from her Valentine's Day fall. She broke her pelvis and right wrist in an encounter with an excitable bulldog (accounts differ on whether it was French or English). It takes a short person to get knocked over by a short dog (no matter how hefty), but my family is good at short, and Mom is the all-time champion short person. Anyway, she's finally got the wrist in a cast so she can used a footed cane and/or walker to get around, and it looks like she could be released from the rehab center in a few days. She is determined and feisty and will certainly work at getting sprung, if not necessarily for good behavior. One considerable upside to this ordeal has been that she has had to stop smoking.

Hanging out by the side of the trail.

3) more family--Liz and I met Rosie and Lee in Florida to tour some potential wedding venues. We also got a chance to visit with Lee's mom, Fay, at her idyllic nature/music/artifact sanctuary in Micanopy. The turtles are out down there, at least, also the alligators and azaleas. Although we didn't shoot the turtle video (dead camera battery) we can vouch for the merry-go-round.

Happy couple #1

Happy couple #2. Sorry about that smile. Note how the proprietor
gets her advertising done. You can't get out of there without
a "selfie." 

So maybe turtles are the emerging theme.

4) The new blood work is in, and it's good. Nothing much has changed, and there are tiny improvements in a few spots.

A new year

Paperwork loves a new year. Time to renew our vows to everyone from magazines to insurers, tax collectors, DMVs, and all those who have tied themselves to us financially over the years.

One of my new rituals involves the annual establishment of my disability. It's a good question, in more than one sense. It's easy to see that physical injury can make it impossible for you continue to do your job, and it's not too hard to extend that to a rapidly progressing neurodegenerative disease like ALS, say. Other situations can be harder to understand.

Suppose instead that you are diagnosed with a disease that kills half of those diagnosed within two years. You get high quality care and after two years you are feeling pretty good and the disease is controlled, yet there is no cure, and the disease will progress. Are you disabled? That's where I am, and I'm not sure how well I can communicate how it feels to be here.

One version: imagine being in a military unit, after two years in Afghanistan, and only half the unit is still alive when you return. On the one hand, war has all kinds of stresses that simply being a cancer patient doesn't--as a patient, you don't see your comrades dying, or hear the screams, moans, cries of the wounded. On the other hand, when you return home from war your risk of death is suddenly reduced by orders of magnitude, a relief not generally available to cancer patients. So it's not a great analogy.

Another version: staying alive is my full-time job. It doesn't take all my time, but it is the focus of each and every day. Sometimes I have a clinic visit, but most days it's just about doing the daily chemo regimen, managing the consequences, and not getting into situations that cause avoidable stress. Like any "full-time" job, there's a certain amount of time for other things. This is my life now, and I think, immodestly, that I have been pretty good at it so far, with lots of help from Liz. Time will tell.

That's a self-involved perspective, of course. Nor is it original. I hope I'm not misquoting Samuel Johnson (or at least Boswell) here: 

Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.

There are differences in my case, certainly. Unlike a court, your cancer doesn't give you a date certain. So many cancer stories begin "They gave me X days/weeks/months to live." Usually the teller outlived the date promised. The non-tellers of these tales, we may fairly assume, did not exceed the expected time frame. But what does it mean to be on the far side of expected survival? Mostly it probably means that we aren't very good at estimating how long a person will live, whether they have cancer, heart disease, or nothing that can be detected. 

So never mind the fortnight. Or the knowledge. The mind is still concentrated, if not wonderfully. For the record, no one has ever said to me "you have X days/weeks/months to live." Strictly speaking, that's my job and the clinicians know it. I hope everything I've written here hints at the weakness of these kinds of prognostications. 

So how to interpret the fact that half my unit is gone? There's an existential question. Here's how I'm working on it right now (subject to change, abject panic or worse, at any time): 1) every cancer is different, evolving separately from normal tissue and adapting to a hostile environment to the best of its ability; 2) the weaknesses in our genomes and immune systems, along with whatever environments we are exposed to, fall into some characteristic patterns; 3) what we see as patients and clinicians is a small but informative segment of the combined effects of 1 & 2; 4) outliving others with the "same" situation is mostly about the errors in classification (i.e. they weren't the same after all). In other words, familiar to those who have invested in mutual funds: "past performance is no guarantee of future results."

So we return to the small view. I feel pretty good, the blood work looks OK, the drugs (some of them?) are (probably) working. That's all the certainty there is. It's not really different from anyone else's situation, except that there is a good reason to think that whatever happens will happen sooner and in a very particular way. Meanwhile, I'll try to stick around and stay as healthy as possible while all the new drugs are getting tested.

Hanging around

It was a little over two years ago that I discovered I had cancer, and there was a period of a few months where each week or two seemed to bring a more ominous parcel of news: myeloma is classified as incurable, or, in the delicate phrasing of Blue Cross/Blue Shield, "inevitably fatal"; various of my bones, notably my back, ribs, long bones, and skull, have "innumerable" lesions (aka holes); the tumors have a specific "high risk" mutation that disables (actually destroys) TP53, the "guardian of the genome" . . .

I'm not given to drama, but it's a lot to take in out of the blue. It's also a lot to unload on other people, especially family. Liz has had to absorb this on a daily basis, of course, and has been there for every single office visit (there have been many, many office visits) and the vast majority of the infusion sessions, biopsies, line insertions (and re-insertions) and removals, C/T scans, MRIs, dietary assessments, apheresis sessions, discussions of my bowel movements, nausea, etc. Not to mention much travel back and forth from Rochester, Minnesota by air and land. Liz has done all of this, dealing with the coming reality of life without me (not to overrate my contribution, but after 30+ years the change at least will be daunting). Meanwhile, she has been subject to years of cruel abuse both from her (and my) former department chair, and from, of all people, our son's girlfriend (or, as he says, "partner"). Why exactly the abuse rains down on her is a subject for another blog or two (coming soon). But it's real, it hurts, and I've been no real help.

Most people (excepting those special cases noted above) are shocked, sympathetic, at a loss, when news of this sort is presented to them. I know the feeling from both sides now, and it's real, too. After a little while, I realized that if I told my story to someone new, it was more stressful for the listener than for me, since I already knew the story. But a story wants to be told, and I probably have told my story more times than I needed to. Here I go again, for instance.

Two years out, there's little obvious drama. Although it's still not curable, the disease is stable now, and might remain that way for quite awhile. I will admit that I have often checked my watch during the flat part of a movie. Or at almost any moment in a French movie. The lack of drama is sometimes almost disappointing to me, which is really stupid. Drama will do me no good. Yet there is this vague but insistent feeling that I should be doing something, fighting something. I've said before that a cancer patient is the battlefield, not the soldier, so fighting cancer is not an option, not really.

What I should be fighting is the injustice and ignorance in the world. Nothing to do with my health, which has to this point been as privileged as any cartoon version of a 21st century white man would have it be. One part of the exams that my class of anthropology majors faced in 1980 was a response to  "Reinventing Anthropology," a book from the early 70s that confronted us readers with a full-in-the-face onslaught of raging cultural, political, and ecological problems [the later 70s on college campuses, for those who weren't there, was a relatively soporific period of sex and drugs and rock and roll mostly devoid of the drama that accompanied the civil rights and anti-Vietnam war protests of the previous decade].

Confronted at age 20 by my professors with the realities of the world, and with little experience of real world politics, I must have sensed something about myself that has held true over the almost 40 years since: I have no ability to convince other people to change their behavior. Trust me, there have been ample opportunities to test this. Results have been consistent. I don't think my arguments have been especially weak, but I do not often close the deal when the people on the other side have other ideas. I must have known or suspected this at the time, because my proposed solution to the problem of the world going to hell in a handbasket was not dependent on persuasion. It was to lead by example, or rather by structure. Self-sustaining communities, intentional cultures built around shared (appropriate) goals, seemed to me to be the best way forward. These could be families or something larger, or really large families. At the time, I didn't really know what a really large family was, but I have learned a great deal since I was 20.

For better or worse, Liz and I have not ourselves raised a really large family, although a really large family has been a part of Liz's world since she was a child, and a part of mine since I met her. Instead, we raised a little tiny family of two children in a house too big (and too geologically unstable) for sustainability. We've had to travel great distances for many years to keep being part of the bigger families of which we are members, and while we do that happily, the sustainability of the model is suspect. As it happens, one of our two children has found it necessary to sever his ties with us. So even the mini-model of community is beyond me, it seems.

Hell in a handbasket? Seems like we're going there fast. You can get a t-shirt. I'm still no good at persuasion, Q.E.D.

The Annual Review

I'm more than a little tardy posting this update, as it's been almost a month since we visited Mayo for a follow-up visit. The main news is that all is relatively well. In fact, not much of anything has changed meaningfully since last November.

The kappas are actually in the normal range now, and if only the lambdas would get back up into the normal range, the kappa/lambda ratio might be closer to the magic 1.0 (it's bouncing between 4 and 6 now). The official line is not to worry about the lambdas, since they're not the problem and their numbers are depressed by the chemotherapy. That makes some sense to me, but I think the "normal" range for kappa is probably irrelevant for myeloma patients for the same reason. It's good that the levels are low, because too much of that protein will cause organ damage, but it would be wrong to think (I think) that "normal" levels mean normal functioning. Probably I have about as much normal kappa as lambda, and the rest (3 to 5 times as much) is the bad stuff. All in all it's better to have less, and I have much less than I did two years ago (when it was several hundred times as much). So that's good.

There is no more bone damage apparent, although I have been driven slightly crazy by one comment in the radiologist's report: "the prominent lesion on the left scapula is unchanged." I have not been able to find any previous reference to a prominent lesion on my left scapula, and I just want to know where it is, mostly out of curiosity. Apparently it's been there awhile. I've been thinking that I'd like to try hitting some tennis balls after too many years, and (since I'm a lefty) I do want to know if my left shoulder is up to it. Don't really want to find out the hard way.

The only trend line that's really trending these days is my platelet count, which is going down. It hasn't dropped into a dangerous zone yet, but it means I bruise and bleed easily (always did, just more so now), so we're making a small change to the meds to see if that helps. My old friend dexamethasone is used to treat autoimmune thrombocytopenia (low platelets), but that probably has to do with its immune-lowering functions rather than any stimulation of platelets. Cutting down on aspirin (which I take to prevent blood clotting) seems like a good idea. It might not bring the counts up, but it should improve the clotting ability of the platelets that I do have, and the risk of unwanted clotting must be reduced if I don't have much of the stuff that does the clotting in the first place (that would be the platelets).

Reading all that, I think I've done my best to put a dark spin on a good report. I'm feeling good, staying active, riding 30-40 miles a week, and have all the support a person could hope for. Survival stats for myeloma patients keep improving, and some of the newer drugs will probably blow the previous results away. Mel Stottlemyre (look him up, kids) has been hanging in there for many years now, diagnosed in 2000, and he had it tough (chemotherapy-wise, at least). Lou Brock was diagnosed more recently, and now says he's "cancer free" (I'd beg to differ, but he is a Hall of Famer). I was a little too young to remember seeing them (if I did) on TV in the 1964 World Series, but it must have been a good one.

Speaking of baseball, at some point I want to review the Phillies' glioblastoma issues. More on that later.