I’ve received tons of great feedback from the blog, and I fully intend to keep blogging, hopefully one or two posts per day minimum.

But today I had a lot of work to catch up on (some of which I got done), and the fact that we can’t bathe makes me sleepy, greasy and grumpy . . . and not much in the mood for blogging.  We can’t bathe because a water main ruptured on Saturday, and now the Boston water supply is contaminated with fecal bacteria.  Just the extremely uncommon event I need right now, eh?  As a result, of course drinking tap water is out, which isn’t a big deal.  But showering is also out—too dangerous for me.  So last night I boiled water for hours, slowly filling the tub to take what was ultimately a very unsatisfying bath.  I woke up this morning feeling gross.  And bathing is very important for me in my condition.  Accumulating bacteria is not exactly what I need to be doing right now.  We considered grabbing a hotel in P-town (cheap right now, before peak season), but then we’d have to contend with carpet, and curtains, and any microbiological gifts the previous visitors might’ve left.  So we just stayed put.  Boston water officials are estimating that the water will be potable again tomorrow afternoon.

And to add to the good times, tomorrow I have my weekly hospital appointment.  Walking into a hospital, with all of its multi-drug resistant strains of god knows what is always a bit difficult. Sitting in a crowded waiting room is even more unnerving.  But, in general I actually enjoy meeting with my physician, and our meetings always go quite well.  If my red blood cells, platelets and magnesium are all in good shape, the appointment will be fast.  If not—if I need a blood transfusion, a platelet transfusion, or a magnesium infusion—I’ll be at the hospital all day long tomorrow.

Red blood cell and platelet transfusions are not awful.  I usually break out in hives—likely due to mismatches in subtle details of blood chemistry.  Sometimes this can lead to the development of antibodies, and therefore immune reaction against blood products, but luckily that has not happened to me.  It’s the magnesium that’s so tough.

As I mentioned in an earlier post, I’m taking a drug called tacrolimus to prevent Graft Verus Host Disease—in which my new immune system (correctly) recognizes that my body’s tissue are foreign, and attacks them.  The tacrolimus is part of the chemical milieu that tricks my new immune system into accepting my body’s tissues as self.  It also leaches magnesium out of my body.  I mentioned earlier that I had to take supplements because of my malnutrition, but I didn’t provide details.  A normal daily supply of magnesium is up to 400 milligrams; I was taking six times that for weeks early on, and even then my magnesium was too low.  Very low magnesium means vigorous, uncontrollable shaking, and left for too long, nerve damage (and I already have that from four years of chemo, thank you).  Over time, the kidneys accommodate and stop leaching the magnesium.  But I’m not sure that’s happening to me yet.  If it’s not, I may have to have a magnesium infusion.  The problem with magnesium infusions is that they make me feel like I’m being burned from the inside—and they take hours; one time I was infused for five hours; my physician did not order that torture (a nurse practitioner did, despite my protestations).  And since that lovely experience, my physician has been very good about allowing me to increase my oral doses so I don’t have to endure the infusions, but there is a limit to how much I can take by mouth, as it too causes diarrhea.  Sheesh!

The point is, I might have a quick day tomorrow, or it could be a long, rotten day.  I guess you’ll know which easily enough: If I don’t post, it’ll be because it was a bad day.

I haven’t read the literature on this myself, but my oncologist tells me the data are strong that taking walks—or just getting up and about—has a significant impact on recovery, especially regarding fatigue.  So, as I’m feeling so much better (being able to eat tends to do that), my partner Greg and I decided to take a walk today.  We just got back.

Now, going out is no small thing.  We have to select a very open place, with few people, not a lot of dirt or dust in the air, and not much wind.  I have to wear a mask and gloves to prevent acquiring an infection.   Sunblock is required on all exposed skin, so as to avoid stimulating my immune system, which might risk Graft Versus Host Disease (more on that later).  For the same reason I have to wear long pants, a long sleeved shirt, and, because I’m bald, a hat.  So, days ago, my handsome, sweet, loving Greg—who, bless his heart, knows nothing about baseball—went to the store and bought me sunblock and a hat . . . a New York Yankees cap.   And we’re living in . . . ahem . . . Boston.

So, we happen to be living across the street from Church Park, the so-called “mother ship” of the Christian Scientists—who, you know, dismiss medicine in favor of laying on of hands, prayer, and dead children. (Don’t get me started.)  Anyway, we walked around their reflecting pool, and by the time we got to the other side, my feet were starting to hurt pretty bad from the neuropathy—which has been much better, but walking really brings it out.  So we headed home.  No one had commented on my hat, and I thought we were going to slide into home plate, safe.  Alas, steps from our door, a group of snarky young men, seeing my hat, said, “He’s wearing that mask so he won’t get contaminated by the Red Sox.  Boo Yankees!”

I just want to point out that I despise the Yankees, and this is not my fault.

One of the drugs I’m on for immunosuppression makes me shake constantly.  It’s getting annoying. This side effect, coupled with the neuropathy in my hands, makes simple tasks, like lifting a fork, difficult.  I wonder if this is a glimpse into how people with Parkinson’s feel?  Probably nowhere nearly as bad, but it bites nonetheless.

The drug, tacrolimus, is not used widely for stem cell transplants, but is used generally for kidney transplants.  It’s strange that I’m struggling to rebuild my immune system, and I’m taking drugs to slow that process way down.  But this is part of the dance—coaxing the new cells to slowly, ever so slowly open their eyes, and think that what they see is self.  If they wake up too quickly, they’ll see clearly and attack.

A related immunosuppressive drug that I’m taking, sirolimus, is used probably by even fewer stem cell transplant centers, but the data on this drug are impressive.  As an inhibitor of the mammalian Target Of Rapamycin (mTOR; indeed, sirolimus is rapamycin), it blocks a complex cascade by which cells proliferate, and so all is slowed down.  The new cells are very sleepy.

I’m very lucky to have these drugs.  My current physician is rare in that he does clinical research, and he is actually good at it (this is rare among physicians).  These immunosuppressive drugs, coupled with other novel treatments, are the reason my hospital’s success with stem cell transplants is so much higher than the national average.  Every day I am grateful that I have the care I have (and my praising physicians is as rare as their conducting good research, so that should tell you how confident I am in my physician).

It is worth noting that both of these chemicals are natural derivatives of bacteria:  tacrolimus comes from one species of Streptomyces, sirolimus from another species of the same genus.  In fact, most of the chemotherapies I’ve had are naturally occurring biological products.  Vincristine—one of the first chemotherapies I ever took, and a potent inhibitor of cell division—comes from the Madagascar periwinkle, once placed in the genus Vinca, where the drug gets its name.  Adriamycin, a chemotherapy that damages DNA directly, is also derived from bacteria. And an experimental drug currently showing great promise, Gossypol, is an unaltered, direct extract of the cotton plant, found in the stems, roots and seeds.  This drug directly blocks bcl-2, the epicenter of my cancer’s existence, but more on that later.

I could go on and on.  Hundreds of our pharmaceuticals come directly from natural sources.   The only difference between so-called “natural” medicine and “western” medicine, again, is that the latter is subjected to careful testing, and the former is not.

I can’t believe I could type all that with this much shaking.

I’ve just started a new drug for the peripheral neuropathy.  The drug turns me into a complete zombie: I’m unable to stand, extremely sleepy, hallucinating, and unable to focus my eyes.  These symptoms are supposed to pass in a couple of days, but the central nervous system impact of this drug is much, much greater than any narcotics I’ve taken.  The good news is that the new drug does indeed completely eliminate the pain in my hands and feet, whereas the narcotics did not.

Neuropathy, abdominal pain, diarrhea, nausea, vomiting, narcotics, dehydration, extreme fatigue, and crushing sadness—these are the experiences I’ve been enjoying for the last week.

This has been a hard week—the last few days especially so.  With the ongoing C. difficile infection (which is perhaps fully suppressed now . . . maybe), I’ve been eating nothing but yogurt for more than a week.  Well, I did have a banana two days ago, but the point is I’ve been wiped out.  My protein levels have been low which caused my cells to start to lose their integrity, leaking fluid that was filling my feet like balloons.

I knew that the stem cell transplant would be hard, of course.  But I was naive; I did not anticipate the immense fatigue and my becoming nutritionally deprived.  I’ve never though twice about skipping a meal, or two, or even fasting for an entire day—I’ve done all of these many times.  But this transplant is fundamentally different.  My protein is low; many macro- and micronutrients are very low, such as magnesium and potassium, so I have to take supplements.  I should have anticipated how much energy my body would require to build all of the cells in my blood, a mass that I suspect may amount to two pounds of tissue or more.  I guess people told me I would be tired, but I thought they meant chemo-like tiredness, the kind that comes and then passes a few days after the infusions.  I didn’t get it that I would be completely wiped out for weeks, or months.

I’ve been exhausted most of the time, and unable eat because of the diarrhea, so I get more exhausted, etc.  The neuropathy in my feet and hands means that walking requires the mustering of will and enduring the sensation of walking on hot coals. Showering means filling the tub with cold water so the warm water from the shower doesn’t burn my feet.  I rarely get out of the house, so no sun, no cherry blossoms (which I love).  I’m such a social creature, always needing to chat with colleagues and meet with friends.  Without that, sadness sets in, and sleeping all day because of the exhaustion makes it worse.  I’ve been in a very deep hole for too long.  The last two days, I cried almost continuously.

My lovely partner gently encouraged me to reach out to others on the phone, and that really helped.

I have had cancer for many years (officially diagnosed two months shy of four years ago, but I had it for years before it was finally diagnosed).  So, I know that many people—most people—have no idea what to say to you when they find out or when they see you after you’ve been ill, or whenever. I get it:  No one knows how to react to cancer.  I certainly understand.  But for all the good intentions, it is hard not be be slack-jawed at the things some people say. A couple of days ago it was, “Congrats on your stem cell transplant.” I’ve heard this one a few times before. Congratulations?  Really?

Since the first day after diagnosis, this was the one procedure that I was hoping to avoid.  It is not at all guaranteed to work, and the risks are extreme.  The fact that it ever works at all is quite impressive.  Coaxing someone else’s immune system to play nice inside a completely different body?  I mean, talk about cellular altruism!  These new cells should rip my body to shreds, and they surely would were it not for years of careful research that has revealed which drugs keep the new immune system from doing just that.  Of course, this procedure often fails despite the research, and despite the drugs, and the new immune system does exactly what it normally should do: Identify my body’s cells as foreign and attack.  This is a serious risk, not to mention the very high risk of infections that lingers for at least a year, often longer.  For me, I just flat ran out of other options, and so the choice was undergo this very risky procedure or surely die of cancer.  So, the transplant, despite the data on survival, became the logical choice.  I’m fortunate that my hospital can boast a first-year survival rate of about 90%, but the national average is nowhere near that. People die all the time of stem cell transplants.

Maybe people don’t know this, but they surely know that this procedure is not an award.   I try be tolerant of these comments; I really do.  I know most of the time, people say these things to try to be comforting to me, and usually to try to comfort themselves as well—to give themselves a sense that this horrible disease isn’t so bad after all, so that they can shield themselves from their own fear of getting cancer.  These are all human responses and perfectly understandable, but this disease is horrible, and the treatment is a last resort, and something that I very much had hoped to avoid . . . and it very well may kill me.  That’s the truth, so I don’t think congratulations are in order.

The last couple of days have been rough, and I couldn’t post.  But now it seems like the Flagyl is finally suppressing the Clostridium difficile infection.  These bacteria—like so many other organisms—can shut down most of their metabolic activity when environmental conditions are unfavorable, and while in this state, they are essentially impervious to antibiotics.  These spore forms can stretch their legs and start cranking our their toxins again once the antibiotics are out of my system, so relapse is always an issue.  I’ll be cycling on and off the Flagyl for the next few months to deal with this likelihood . . . that, and eating lots of gram-positive, “friendly” bacteria in the form of tons of yogurt.

This reminds me of a very cool group of organisms, sometimes called water bears: the tardigrades. Tardigrades are the closest relatives of the arthropods, and they haven’t changed much in a long time (the 90 million year old fossil tardigrade shown below looks essentially like modern species).

Fossil tardigrade, from Grimaldi and Engel's spectacular book, Evolution of the Insects

Tardigrades can hunker down into a spore-like condition called cryptobiosis, and in this condition they can live for centuries (yes, centuries) with no food or water.  In this state, they can survive intense radiation and even the vacuum of space.  No doubt, this ability is one reason they haven’t changed much:  If you can survive all environmental changes as you are, there won’t be much evolution going on.  Killing these guys could be nearly impossible when they’re hunkered down. So, to put in another way, as bad as C. difficile might be, I’m just glad I don’t have a colony of tardigrades up my butt (thankfully, they don’t cause disease).

As I mention in the About page, this blog is not going to be a diary of pain and suffering. Nor will it be a record of hopeful triumph, courage, bravery, and . . . vomit (well, it probably will be about vomit from time to time. I certainly have been doing enough of that). Yes, sometimes I’ll write as though I’m making a diary entry: what happened to me today, or recounting a past event. I do want the blog to relate those experiences. But I’m also just putting down my thoughts about cancer—those shaped by my training as a biologist and as a person who has cancer. But now, a first of the diary-type entries.

Today was a rough day in a string of rough days.  Immediately after my transplant, I had a typical litany of fairly minor problems: bacteria in my skin causing folliculitis, fungus in my crotch causing me to want to scratch myself to death, no platelets, no red blood cells, and of course no white blood cells.  This is what happens when your bone marrow is destroyed so that another’s can take up root.  So, I wasn’t surprised, and it wasn’t that bad.  The first week I was pretty pleased with how easy it was.

Then came the fatigue.  And I mean fatigue.  As is usual, everyone at the hospital told me, “Oh, yeah, that’s very common” after I was blindsided by it.  But I shouldn’t have been so blindsided; remaking your entire supply of blood cells is pretty heavy lifting.  If I missed a single meal, I thought I would die.  I had no spare energy. Not a bit.  But once I got used to that, all was well.  My new stem cells engrafted very quickly and started making for me a shiny new population of blood cells.  My white blood cells came first, as they do, and my platelets shot up to within normal levels shortly thereafter.  I was feeling great.

Then about a two weeks ago came the change:  Excruciating bowel pain, leg pain, diarrhea, among others.  After a spike in fever, I was admitted to the hospital, and after a blizzard of tests, it was discovered that I had Clostridium difficile.  I had actually been tested for this bacterium the week before, but the results were negative then.

This germ normally lives in our guts, but with all the antibiotics I’d been eating, the bacteriological ecology of my intestines had been altered,  and a new force was on the rise.  I’ve been dealing with the trauma of that force since, and the drugs I’m on are working, but slowly. Those drugs also suppress my new blood cells, so many of my cell lines have fallen dangerously low again.   I’m still having problems with my blood chemistry, because of the diarrhea; I’m still in a lot of pain (though less); and I still can’t eat much, which means I’m tired most of the time.

My nurse told me today, “Endure, endure!”  She sounded like Whitman, and it gave me some strength.