Greg and I moved back to our home in Vermont today.  Now, instead of weekly visits to the hospital in Boston, we’ll only have monthly visits.  This would’ve come much earlier had it not been for the (likely) false diagnosis of CMV and the myelosuppressive therapy that ensued, which may well have been key to my contracting the C. difficile that knocked me down so far.  But despite all of this, I’m now doing quite well and feeling very strong.

Last Tuesday during my last weekly visit, I was in the room where nurses take vital signs, and a woman was sitting next to me. She was wearing a mask and gloves, and when this sort of thing happens—when two transplant patients are sitting next to each other—there’s this strange E.T.-and-Elliot thing that goes on; we just want to talk to each other.  Or in my case: I can tell they’d like to connect with me, and I usually resist this, being a curmudgeon and all.  But on Tuesday, the woman sitting next to me just jumped right in.  She started asking me questions about my progress since transplant.  I was in a pretty good mood that day, but had this happened on practically any other day, I’d probably have perceived this as rude prying.  On this day, I saw it as tolerable prying, so we had a chat.  During our discussion, she asked me how far along I was since transplant.  I told her just over two months; she was quite surprised.  She went on to say that she was six months out, and that I looked so good she thought I might be nine or more months since transplant, but certainly ahead of her.

I was pretty surprised by this reaction, and it made me realize that I just didn’t have any frame of reference for how well I’m recovering relative to the average patient.  I’ve always thought that I’ve been doing pretty well, but I’ve never really known.  So I asked my physician what he thought.  He said emphatically that I was doing much, much better than most in terms of recovery, energy level, activity level, and such.  In fact, except for the uncontrollable neuropathy and my problems with the treatment for that (more on that later), I don’t have many complaints.  I’m more energetic now than I’ve been in ten years, and my red blood cell count is still rather low, but rising steadily, so more energy is yet to come.

So, despite my setbacks—the main one being the serious blow I took from the C. difficile—I seem to have rebounded and my health status has more than “caught up.”  My blood cell counts look great for my stage, and my physician has actually started tapering my immunosuppressives, a month or two early.  That means my lymphocytes will come on board earlier (but still many months away), which means protection from viruses.  But this could also mean that Graft Versus Host Disease (GVHD) is going to hit soon.  But GVHD also means Graft Versus Lymphoma effect:  All my cells are me, including any remaining cancer cells that are almost certainly floating around.  If—or rather, when my new immune system recognizes that it’s in a body of foreign cells and initiates an attack on my whole body, that attack will be on any remaining cancer cells too.  In fact, because this attack is mediated by T-lymphocytes—and those cells normally communicate with B-cells when they initiate an immune response—this means that when GVHD does hit, those T-cells will preferentially seek out B-cells during their attack on my body.  As I have B-cell lymphoma, those lingering cancerous B-cells will very likely come into contact with those T-cells that are seeking to fight off my cells.  When this happens, the T-cells will recognize that my B-cells are foreign too, and some of those T-cells can kill my cancer cells on the spot (so-called, Cytotoxic T-cells).

So, GVHD is kind of a mixed bag.  But one thing is certain from the empirical literature: Long-term survivors of stem cell transplants have mild-to-chronic GVHD.  These people are far less likely to relapse, and people who have no GVHD are far more likely to relapse.  So even though I’m over some serious infection hurdles, and even though the majority of death risk is clustered in the first three months post-transplant, I’m about to start facing the next challenges.

But I’m happy to be healthy, at least for now.  And Greg and I are both very glad to be home.  But I think we will both miss our deluxe apartment in the sky-hi-hi.  And just for memento, here are some photos of the view we’ve lived with for the last 75 days:

The Prudential Building (tallest), and a couple of others that no one cares about.

Christian Science weirdos. Despite being cuh-ray-zee, their buildings are "truly beautiful to behold," including this lovely library.

More Christian "Scientists," with their absolutely lovely buildings (all the buildings in view are CS buildings in the famed "Church Park.") The shadow cast is from our sixties-built, 1984-style 12-story building (not run by the Christian Scientists . . . as far as we know).

It appears that I’m over whatever I had. My nose has stopped running, and my slight cough has resolved as well. I felt a bit under the weather yesterday, but I’m feeling better today—not as good as before this scare, but I’m getting stronger again.

So much of this process is unknown, but a lot is known. One of the things we know is that slightly immature T-cells are responsible for initiating immune responses against viruses. When these T-cells come in contact with other cells that are infected with viruses (or that are otherwise presenting “foreign” chemicals), they do a variety of things that ultimately cause the infected cells to die. But this process takes time, and the infection can spread in the meantime. So, one of the things these immature T-cells do to help with future infection from the same virus is they give rise to more specialized cells. Some of the resulting differentiated T-cells are known as Cytotoxic T-cells (or sometimes CTs, or CD8 cells, where CD refers to a group of proteins on the surface of the cell membrane, deemed Clusters of Differentiation. CTs, or CD8 cells are also sometimes also called T8 lymphocytes, but I’ll just stick to CTs).

CTs are one of many kinds of so-called memory cells; they retain a special chemical affinity (a “memory”) for cells infected with a specific virus, and when the CTs encounter infected cells again, they kill them on the spot—a much faster solution than the slower process that happens the first time infection occurs. This, coupled with other systems, is why once we’ve had a virus, we’re forever immune.

The problem for me is, I don’t really have any T-cells at all. My new immune system is not developed enough to have created any mature T-cells or even any of the slightly immature T-cells needed to initiate the response described above. And that means I don’t yet have any Cytotoxic T-cells from my donor marrow. As CTs are long-lived memory cells, I presumably have circulating in my peripheral blood some of my original, native T-cells that survived the stem cell transplant, but that doesn’t appear to be true. We know this because of the results of my most recent chimerism tests—genetic tests that determine the proportion of peripheral blood cells that are of my genotype versus my donor’s genotype. (Remember that my blood is a chimera right now, like Dictyostelium—part original cells, part donor cells).

Those genetic tests, performed a month ago, show that when considering all of my T-cells, 97% are donor genotype. Those 97% are very immature (too immature to give rise to CTs), and the remaining 3% are what’s left from my former immune system. And while this 3% no doubt includes mature T-cells, and some CTs, they just aren’t very clinically effective for most people (so says my physician). Hammered from the chemotherapy of the transplant? The radiation? Too few to mount a defense? I’m not sure, but they’re impact is apparently thought to be minimal in any event.

But something has changed. I had these symptoms, and now they’re gone. Maybe I beat a virus somehow; maybe it was allergies. I guess I don’t care too much, except from an academic position. But one thing is certain: It couldn’t have been that crystal I shoved up my butt. I only did that an hour ago.

My last post was an honest and authentic expression of my thoughts and feelings about my current state of being.  I wasn’t hiding anything.  But there is something else going on.

This morning I awoke with a runny nose and some congestion.  This could be a minor bacterial infection, which would not likely be a problem to snuff out.  But, given that my mucus is clear, bacterial infection seems unlikely.  Viral infection is more consistent with that sign.  It could be one of a number of common viruses that cause runny nose.  For some of these, anti-viral treatments are available.  For many, the viruses don’t even have names, but they don’t cause dangerous infections either.  I’m hoping for one of these, of course.  It could be the flu, and (despite rapidly increasing resistance) that is treatable with osteltamivir.  But it could be something much more dangerous:  the seemingly innocuous, simple, common cold.

While the common cold causes the mildest of infection in immunocompetent people, in me, it could be a disaster.  Permanent scarring of the lungs is one outcome; death is another.  As no treatment for the common cold exists (though a number of experimental therapies are soon to help out), recovery relies on one’s immune system entirely.  Chicken soup may soothe, but it doesn’t cure.

Viral infections are defeated by lymphocytes.  The two main groupings of lymphocytes are T-cells and B-cells.  T-cells circulate in our blood, looking for proteins that are not self.  When one is found, the T-cell starts dividing, and some of those T-cells seek out B-cells.  The T-cells notify B-cells of the presumptive invader, and through one of the most amazing biological processes ever elucidated, germ-specific antibodies are produced.  Those antibodies ultimately cause cells infected with viruses to die (among other things).

So T-cells initiate (and later suppress) immune response.  B-cells primarily give rise to antibodies. The problem for me is that I don’t have very many of either of these cells.  Unlike neutrophils (white blood cells that primarily fight bacterial infection) and platelets, many developmental intermediates come between stem cell and mature lymphocyte, and it can take up to nine months for mature lymphocytes to appear after transplantation.  I do have a few lymphocytes from before the transplant, but it’s not clear that they will be of much use.

At this point, I just have to wait.  If matters get worse, I’ll get a nose swab tomorrow.  That might reveal a treatable virus or an untreatable virus.  Maybe I don’t have a virus.  I just don’t know right now, but in addition to being energetic and happy, I’m starting to get pretty scared.