Down to Earth

We've been back in Louisville for a few weeks now, absorbing the rainfall, and maintaining our so-far perfect record of not attending the Kentucky Derby.

I have been working a little medical mystery. I've become accustomed to a kind of gastrointestinal rhythm as the chemotherapy cycle rolls on. It's a 28-day cycle, with all the major drugs delivered on days 1, 8, and 15, and dexamethasone continuing on day 22 as well. All those days are Thursdays. The standard weekly pattern has been 2-3 days of constipation, followed by a day or two of something kind of "normal" (by chemo standards), and then a day or two of diarrhea. But it varies, and I've developed a tolerance for the variation that may be a little too tolerant.

Somewhere in the run-up to the wedding, it finally dawned on me that I'd had the diarrhea for a while, but not the constipation. In fact, the diarrhea was getting pretty bad, to the point where a longish dog walk could become a (mercifully--so far--internal) drama. I tried some probiotics, fiber (bad idea), and so forth. The impending wedding presented a potential Waterloo (sorry!), but the gods continued to be merciful and I thought perhaps the whole thing had passed.

When we returned to Louisville, though, the pattern resumed. Liz reminded me that Sunny tested positive for Giardia when we adopted her (Giardia can be transmitted from dog to human directly). She was treated at the time, of course, and tested negative afterward, but just try to stop a hound from drinking out of puddles, ponds, and the worst parts of streams. I have. I tried to schedule an appointment with my primary care doc to have a stool sample run. He couldn't see me for two weeks, which seemed excessive. His assistant suggested urgent care, or my hematologist. Urgent care seemed to be the better fit, so we headed over to a place we'd used before, conveniently operated by the same organization as my hematologist.

It turns out that this urgent care doc couldn't run a stool sample(!), because he couldn't do follow-up(!!), but he could prescribe flagyl, as if the Giardia diagnosis had been made (!!!). So he did. I bit my tongue, as I do, not being able to imagine how any critique of this system I leveled at him would get communicated back to the higher-ups at whatever meeting of whatever group he next attended. So I effectively agreed to do the experiment the wrong way around.

Meanwhile, it occurred to me that it was easy to get the dog re-tested. I picked up a stool sample kit at the vet's, and by the next day had a result back (cheap, too!)--negative for everything. Giardia was no longer looking like a strong contender, but I dutifully continued with my course of treatment, even though the early results were not promising. At my next hematology appointment, I asked if they could do a stool sample (they could), so I gave them one. C. diff. is the main concern for cancer patients, but hey, why not check everything? Negative there, too, although I'd like a little more detail on what exactly was tested.

Meanwhile, nothing has really changed, except my weight, which has declined, and my blood pressure, which has increased. I need to keep my fluid/electrolyte intake up, and take enough Imodium to manage my life in the interim. I have recently come to believe that the chemo cycle is the driving factor, probably the Revlimid (lenalidomide). The 28-day chemo cycle that I'm on is 3 weeks of Ninlaro + Revlimid, and 4 weeks of dexamethasone. Lately I've noticed that the 4th week has been better than the rest. Within the first 3 weeks, it seems the end is worse than the beginning. Within each of those weeks, I take Ninlaro at the beginning, and Revlimid every day, so the ratio of N/R declines through the week, and the diarrhea gets worse.

Tonight, as I was finding links to help with the technical stuff, I stumbled upon something that might explain the problem (if this were a podcast, I'd say it "rocked my world," but that seems overwrought in print). It turns out that Revlimid (for reasons I don't currently know) contains lactose. As a white guy, that wouldn't be likely to draw my attention, but it seems that I am lactose intolerant, according to
23andme:


Over the last few months, I've been trying to reduce my consumption of dairy products, with mixed results. but I had no idea that for 75% of each month I've been compromising my efforts (and paying handsomely for the experience!) with one of my go-to drugs.

I'll have a lot to discuss next week, when I have my annual follow-up review at Mayo.

Nups

The wedding has passed, was amazing. It's well documented elsewhere, so I will include only a few key items here. Weather flirted with oppressive during the afternoon, but a breeze off the river brought relief right at the required time, and all the arrangements worked just the way they were supposed to. Great food, company, music, dancing, etc. My only regret was not getting to the dessert table before it was utterly destroyed. I'm deeply humbled to know that Vampire Weekend has named their new album in my honor.

 

Marchness

Around here, March is the hinge, the connector, between Winter and Spring. Individual days sometimes represent the transition, and today was one of those. A little below freezing at the outset, sixtyish late in the afternoon. Sunshine was the difference.

Mostly it still looks like Winter, but there are these little hints of things to come. Daffodils are showing up, crocuses are everywhere. A few of the early magnolias are showing off. I'm expecting to see the first few dandelions any minute. The spring peepers are singing in farm ponds and marshes.

We're ramping up for Rosie's wedding now. Because Rosie and Lee have been doing the bulk of the work on planning, our jobs have mostly been about getting ourselves dressed, shod, and prepared. I tried to find some hand-stitched shoes online, but they were predictably too narrow for my flipper feet, so I had to go to an actual shoe store. It worked, and I didn't get killed in the parking lot (pretty close, though), so we can check that one off the list.

Liz is away, so it's just me and the dog, and it's hard to say which of us is more obsessed with getting away from the same old neighborhood scene. Today we took a road trip to the Hoosier National Forest (who knew Indiana had a National Forest?), about an hour's drive, and checked out the Hemlock Cliffs. Sounds like a great spot for suicide, but really it's a very pretty canyon with caves, waterfalls, and ferns. There are posted warnings about exposure and falling to your death, but anyone who's been out west will not find the landscape intimidating. It's not even that slimy (a surprise in this very wet season).

Pretty sweet stuff for these parts. I'm not sure how that cairn is put together. It's impressive, though, and rebar seems unlikely in that location. It has a shrine-like quality that argues against dissection. I restrained myself. And I did not investigate further, as Sunny was interested in other things of the olfactory variety. Southern Indiana has many amazing stories, and I hope we'll get a chance to investigate some more of them.

Sixty

I honestly thought I would not make it to my sixtieth birthday, but here I am. It's been 3 1/2 years, give or take, since I found out I had high-risk multiple myeloma, and I feel pretty good. We spent the weekend in Maryland, with Mom, Karen, Aaron, Rosie, and Lee, celebrating Mom's 90th (February 15) and, secondarily, my 60th (February 19). The weather wasn't great, but the company was. We watched some old 8mm movies my father had shot, talked about family members past and present, ate, and talked some more. Mom's doing great, by the way, as are we all.

Coming back home, the weather has been no better. Cold and wet. Sunny was ecstatic to be released from her brief captivity at the vet's, and to celebrate we went on an extended afternoon walk, almost 5 miles, in Turkey Run Park--my favorite among the amazing set of parklands established in the last 10 years along Floyd's Fork, south and east of Louisville but close enough for an impromptu visit.

Although the weather wasn't great, good clothing always moderates the pain. So we dress appropriately.

Sunny didn't really need her jacket today, but I needed mine. Tonight we celebrate with good bourbon, lamb burgers on the grill, sleep. Tomorrow is another day (!).

Ray

I've been blessed with a few, exceptional, mentors in my career. Academia is full of bogus mentors, more bent on building their own careers than developing the next generation of scholars (I'd say they know who they are, but in fact they generally don't). Real mentors love the dialogue between mentor and protege, rather than loving their own monologue.

I need to work backward on this post, for reasons that will become apparent shortly, and I don't intend to cover the whole set of mentors here. I've mentioned Liz, of course. Others deserve attention, and I plan to honor them all. But Ray White, who died in October, deserves his own memorial. Official obits can be found here and here, so I will not recount the details of his life and achievements, though they are many and impressive.

Liz and I moved to Utah largely because Ray was there. Ray had given a talk at Northwestern in 1985 explaining his vision for the soon-to-be Human Genome project, drawing in part from the development of molecular genetic technology and in part from the genealogical resources available in Utah. Liz found a post-doc in Human Genetics--Ray was Chair of that department. I was just hanging around at the time.

When we arrived, in the Fall of 1986, the atmosphere at Utah was amazing. The emerging promise of genetics was happening on the ground, and everything else seemed small in comparison. There were battling teams, strategies, approaches, and the stakes felt (and were) high. Ray White was the high point, and both positive and negative energy flowed around him.

Any chat with Ray was stimulus for deep thought, some of which I have not yet progressed all the way through. He was enormously confident in the progress of genetic technology and in his (and his team's) ability to surf that technology to great achievement, very very soon. I was not a member of that team until very late in Ray's stint at Utah, at a point when many of the original members of his team had either gone on to great jobs at other places, or found themselves suddenly interested in extricating themselves from a fraught political battle that Ray was losing at the University of Utah. I knew of the battle, and how it would likely go, but found the prospect of working on the projects that we were trying to hatch so stimulating that I never really considered alternatives. I had a lot of confidence of my own--probably a little too much, in retrospect.

He was tall, handsome, charismatic, overweight. There was no doubt you had to bring your A game to any conversation with him. I'd had a little time to develop some ideas and found him willing to listen, from which developed a relationship that was much more about sharing ideas than about successful projects. The ideas were good, but a few years ahead of the technology, and seriously derailed by the post-9/11 internet collapse. We were basically talking 23andMe, but the underlying tech wasn't there yet, and no one wanted a biotech IPO right after 9/11 when the (first) tech bubble burst.

So it all fell apart. We collected a lot of DNA samples from families at high risk for cancers of several kinds, mostly prostate, breast, and colon cancers. The biotech company that was funding the work (DNA Sciences) folded suddenly in February 2002 before any useful amount of genotyping was done (using what is in any case ancient technology by current standards). At the same time, new technologies made family studies look uninteresting and NIH didn't want to fund us. We got some money from the Komen Foundation to do detailed genotypes for the breast cancer families, and have struggled even to get that work published (but you can read it here). Nowadays you would sequence them all, and have a more definitive story to tell. It can still be done, but the take home message is the Anna Karenina principle--that all unhappy families are unhappy in their own way--and the otherwise praiseworthy mania for replication of biomedical studies is a complication: if each high-risk family has a different mutation of a different gene (or non-gene), it's exceedingly hard to find another example of the same thing with the same effect. Or a similar-enough thing with a similar-enough effect.

None of that is Ray's fault, of course. He understood a great deal more about how this would all play out than I did at the time. I'm still catching up, but likely won't ever get there. I'm grateful that I was able to spend so much time in his company.

Winter

Thanksgiving, 2018 was spent in the Berkshires of western Massachusetts, in the company of Liz, Rosie, Lee, Fay (Lee's mom), Will (Fay's brother), and Felix (Rosie's hound/pit bull mix). It was cold, snowy, and sweet. We dodged flying into a winter storm by an hour or so, and the weather deterioriated for the next few days, from snow to sub-zero temperatures.

We had a nice, slightly Gothic, AirBnB in Stockbridge, Massachusetts. Felix and I, who have not lived together since 2014, have a relationship that might be considered co-dependent if we spent that much time together: at dawn, he makes some whiny noises just in case a human will respond. I will, needing to get out of bed around 7 AM under any circumstances. That leads to a bowl of food and a walk. We both like this very much, although I don't know how disruptive it is to his normal routine. On Thanksgiving, the 7 AM temp was just about 0. I'd looked at the forecast before packing, and was prepared, with a down jacket, heavy gloves, a hat, and insulated boots. The dog gave up before I did-- a small, rare, victory.

A shout-out to Will Baird: your songs (and guitar accompaniment) are sounding great.

After the turkey, and the turkey tikka masala, we headed to Vermont, to visit my cousin Barbara and her husband Michael. I love every trip to Vermont, and wonder why we don't seriously consider moving there (mud season, possibly?). Michael was putting up his Christmas lights, and I pretended to help. Truthfully, I probably attached more lights in 20 minutes or so with Michael than I had ever previously set up. He's got it all worked out in advance--without my "help," he would probably have finished in 10 minutes, and gone on to something else. We watched old silent family movies, transcribed to modern digital formats--many more to come, and sampled some excellent local beer and non-local whiskey.

The next stop was Frederick, MD, home to the last of the Kerber-Bogar clan. We had some fun, a couple of nice meals, and serious appreciation of Mom's watercolor paintings. A fancy dinner (with martini) might have been a bridge too far, especially when we got a call from Mom at 12:30 AM--'I've got a nose bleed and I can't stop it'. For context, Mom was the only one of the four of us who didn't have nosebleeds. She says that she was squeamish about blood, but that can't be right--Karen and I both squirted blood out of our noses as if we were in some kind of contest, and Dad (also prone to nosebleeds) was at work for most of that time. I guess Mom just couldn't imagine blood coming out of her own nose. Fair enough, but the oxygen apparatus, and the transition to Winter, are most likely enough to change the equation. We spent 5 hours at the ER. There was nothing really wrong.

Then we got a dog. We call her Sunny, because sunny is something we need around here this time of year. She is a smallish (30 lbs) hound mix--almost certainly Treeing Walker Coonhound, mixed with beagle or something small, but hound like. She is sweet, energetic, and definitely a hound. She was also not entirely house-trained at the time we adopted her. She has a great howl, which she should learn to use more sparingly.

In any case, the adoption of Sunny has derailed any number of projects (including this blog). Here I am in mid-January talking about Thanksgiving. A major motivation for me in getting a dog was to walk. I got more than I bargained for: we have been averaging 5-6 miles of walking every day. I have had to upgrade shoes and insoles more than once this month.

Felix looks like a larger, stronger version of Sunny, but he is not as insistent about getting his way, nor quite as athletic or ingenious about getting it. She likes a car trip, but would prefer to sit in the driver's lap. Seat belts will not contain her--in three consecutive days, she found three different ways to escape seat belt restraints: 1) press the button; 2) back out of the harness; 3) very slowly push forward so that the inertia lock doesn't kick in and you can just squeeze between the front seats and sit in dad's lap. So I got a wire grid to contain her in the back of the SUV. That has worked thus far, but today she removed the cap on one of the screws that holds the grid against the head restraints. I think she still won't be able to unscrew the bolt, but we'll have to see.

confessions

ALMIGHTY and most merciful Father; We have erred, and strayed from thy ways like lost sheep. We have followed too much the devices and desires of our own hearts. We have offended against thy holy laws. We have left undone those things which we ought to have done; And we have done those things which we ought not to have done; And there is no health in us. But thou, O Lord, have mercy upon us, miserable offenders. Spare thou those, O God, who confess their faults. Restore thou those who are penitent; According to thy promises declared unto mankind in Christ Jesus our Lord. And grant, O most merciful Father, for his sake; That we may hereafter live a godly, righteous, and sober life, To the glory of thy holy Name. Amen.

When we went to church (almost all Sundays until Dad got horses as a religion), we attended services at a small, "low church" Episcopalian congregation called St. Paul's (I think about half of Episcopalian churches are called St. Paul's). I was not an enthusiastic church-goer at any age (nor was I enthusiastic about going to school, ironic in the extreme given the 22 years I ultimately devoted to the task of being a student--never mind the 27 I devoted to being a professor). Maybe "devoted" is a little strong, then. If you know me well enough, you might feel entitled to substitute "endured." Otherwise just go along with the premise here--we'll get to the punchline before too long, I hope.

There were some positives, though. The priest (we would never have called him that), John Norman, was brilliant. He had an artificial leg, the result of a war injury (I don't remember whether it was from Korea or WWII), but I didn't know about it until I saw him at the bowling alley. Because of the prosthesis, he had a truly distinctive bowling style, but I think he was the best bowler on the St. Paul's team (I suspect "having a bowling team" is sufficient to make a congregation low church,  but if not, the fact that the one-legged Reverend is the best bowler on the team should seal the deal). He had a lovely singing voice (at least in comparison to the rest of the congregation), a liberal world view, and a good sense of humor.

I could never buy the cosmology. I didn't like Sunday School. I never felt that anyone could justify the extremism of Heaven vs. Hell in a way that was at all consistent with Jesus' message about loving neighbors and enemies. There was almost something racist about it, although I didn't see that at the time. I was not reassured that God (who sent people to Hell!) would be great company for eternity.

But I did love a puzzle. I was especially puzzled by "turn the other cheek." I was bullied a bit in school, although I wasn't small enough at prime bullying ages to be a great target (I was a lousy fighter, though, if they only knew). I'm still unsure about TTOC as a tactic, but I am certain about it as an ethical principle. You could see it, and many do, as a justification for cowardice, but I think the key distinction is that TTOC applies when you yourself are attacked; heroism and cowardice apply when others are attacked and you are called to defend them. 

We have left undone those things which we ought to have done

The General Confession is one of the great committee-written passages in the English language. Properly executed, it's also one of the great pieces of theater. I've done no research on this, but I suspect it was really written by one or maybe two talented poets or playwrights. The whole congregation (and the priest, as I remember it) recites this in unison. It's general enough to cover all the cases, but certainly made me feel personally responsible for "the devices and desires of my own heart" and it still does--almost as if Jean-Paul Sartre had written it.

As I approach the end of my life, I am not worried about Heaven or Hell (they are fiction, people!), but I do feel a need to come to the aid of those who have been attacked for no reason. There are so many, and it's not at all clear how to sort them. Also, it's not clear to me how I can help. Confusion is the first stage of cowardice. No one plans to be a coward--they simply freeze when confronted by decisions that range from difficult to impossible.

My wife has been attacked, repeatedly. So has my son. I'm sure that many people I know have been attacked in many ways, but haven't told me about it. And so many people I have never met and never will have been attacked in so many awful ways. What am I to do? It's a little late to grow a superpower (BTW why no cancer-based superheroes, Marvel? I think it's at least as plausible as Spider Man), so speech is probably all I've got. Gonna keep speaking, and I'll take suggestions.