In this recent blog post, I discussed how my recovery after stem cell transplant has been much faster than average, and there are probably many reasons why that might be.  No doubt the fact that my donor’s genetic markers matched my own perfectly—well, the genetic markers that hospitals check were a perfect match, anyway.  There are literally hundreds of minor proteins that immune systems use to determine if cells are self or not. But maybe many of those were matched more than average, just by chance.  I know I’m not out of the woods just yet, but there are some other possible reasons for my rapid recovery so far.

Greg and I are fortunate that he rarely needs to go to an office.  Greg is a computer programmer, web designer and database manager; he has to work in an office about five days a year, and he goes to work-related retreats and conferences a couple of weeks a year. Otherwise, he’s at home.  As a result, his exposure to infectious agents that in me might cause life-threatening illness is extremely limited.  Most people don’t enjoy this situation, and so I’m sure the average person undergoing stem cell transplantation is exposed to many more infections than I have been.

But Greg and I have been extremely diligent as well.  We’ve taken extreme measures to guard against infection.  We’ve not allowed anyone in our house.  All food, gifts, and mail is wiped down completely with bacteria- and virus-killing chemicals. (Yes, these are nasty . . . and that’s the point: Kill or be killed.)  We got a high-end HEPA filter used in hospitals and endorsed by the American Lung Association.  And these measures are all in addition to the regular extreme rules about cleaning, washing clothes, washing dishes, and such.  And of course, I was a virtual hermit the entire time (with a couple of approved exceptions, when we walked in the park with friends).

Maybe all of this was overkill, or neurotic, or unnecessary.  I know our lead nurse thought so; she promoted much more lax precautions.  We didn’t buy what she was selling, however.  Neither did my physician.^‡ And even if my physician had agreed that these extra steps were a waste of time,  I would’ve ignored him.  If ever there was a time for overkill, I’d say this has been that time.  When it’s time for my nurse’s stem cell transplant, she can be just as lax as she wants.

I have also been exacting in my drug schedule, and Greg has helped a lot with that.  And we’ve learned about the drugs I’m taking so we can play a role in my care.  That has been very important; on three separate occasions, my physician has prescribed a drug, and the wrong dose.  This has happened every single time I have undergone cancer therapy (and I’ve had a lot of cancer therapy).  They screw up the dose, and we’re the ones who suffer.  I learned this lesson during my days of AIDS activism:  Watch the physician’s every move and challenge when necessary; physicians are the top of the hospital’s class hierarchy, and no one else can challenge their actions (a stupid, archaic system that harms only one person: the patient).

Maybe our extreme safety measures had nothing to do with my unusually rapid recovery after the transplant.  Maybe my insistence that the nurses gown, and wash their hands in addition to using ethanol gel, and use sterile technique in all their dealings (especially when accessing my chest port) played no role in my acquiring no nosocomial infections, but I’ll bet it did.  The items on this list of things I insisted of my nurses are all things they normally never do, and I had to fight to get them to do them (as I always do).  I rarely see nurses wash their hands, and when I’ve asked them to do so, they say the ethanol gel is enough.  But of course nurses rarely use enough gel (research shows you have to use a lot), and the ethanol has to evaporate entirely (leaving dry hands) in order to kill microorganisms, and nurses rarely wait for this.  And of course, washing hands plus using ethanol gel would be better than either precaution alone.  Even the infectious disease physician on my team said these measures, including sterile port access, were not important, despite solid evidence to the contrary.  In arguing with me, that same infectious disease physician repeatedly said that the infection rate in the cancer infusion bay was “acceptable.” That rate, by the bye, is three percent for blood infection; I wonder how many people have to get sick with blood infections before he’d consider the rate unacceptable? Four percent?  Five?

In any event, I’d be willing to bet that all these things Greg and I have done—keeping away from people, wiping down all the groceries, learning about my disease, and demanding excellence from the hospital staff and physicians—surely all of these have had a huge impact on my health.  I’m sure some luck was involved, too.  So some of the cards were dealt to us by chance, but we dealt some of the cards, stacking the deck in our own favor.

^‡It might seem weird that a physician and the main nurse working on a team together would not be on the same page about therapies, or how to reduce risk of infection, or whatever.  It certainly is unfortunate, but in my experience it’s not uncommon at all.   It’s surprisingly common for the members of a single team to have differing views about your care, and the members of that team don’t bother to coalesce their views into a single message.  The only sense I can make of this is that the egos involved are so unbridled that none of them are willing to budge.  Of course, this leaves the patient confused and often unable to make an informed decision.  And it’s cruel.  It’s especially cruel to the patients who cannot, for whatever reason, advocate for themselves.   I see no evidence that physicians’ very high view of themselves will change anytime soon.  And this single factor alone is one of the best of the many reasons why hospitals should have formally organized patient advocacy departments that are facilitating and conducting real patient advocacy, and not just walking patients through insurance paperwork (which is what most of them do now).

My good friend, Johanna Wilson, recently posted a comment to my last blog.  I find it so compelling that I’ve deleted the comment and reproduced it here in its entirety.  It is honest, humble (perhaps a bit too self-deprecating, though), and I think quite representative of the way people with cancer feel—and a strong denunciation of the popular view of how we feel.  This deserves front-and-center attention:

I’m with Ms. Ehrenreich in many of her objections to our society’s popular perspective of cancer.  Most of the “cancer people” I’ve spoken with don’t like the term “survivor.”  In my childish frame of reference, I survived chemo, not necessarily cancer. (It was the cancer that failed to survive the chemo!)  It seems to me that survivors are people who withstand a terrific onslaught because of something they did to promote their survival.  If you live through a catastrophic event as a passive observer, you just got lucky.

I also jump on the bandwagon of folks who object to the militarization of commentary on cancer: “battle,” “struggle,” “war.”  I don’t remember any battles or war.  I just remember treatment.  Likewise, terms like “brave” and “determined” didn’t apply to me.  All I did was have treatment.  My medical team and my caregiver put forth all the effort.  I just “took it.”  I certainly never wondered why more hadn’t been done in cancer research (speaking of Ms. Ehrenreich on that last point there).  I felt lucky to live in a society that could provide treatment, and I was lucky to be able to access it. (I know you share that appreciation.)

I may lack an important personality trait that promotes the survival of the species, but I just never felt any anger or sadness about having cancer. (A feeling of loss of control right there at the first, but that passed.)  Fortunately, I never wondered, “Why me?” (I’m always tempted to ask, “Who would you nominate as your replacement, then?”)  The cancer didn’t pick me. I may have actually contributed to its development with some lifestyle choices:  Poor diet, lack of exercise, stressful response to work, etc.  No one to blame except possibly myself.

What I did experience in my own cancer journey was an outpouring of friendship and caring, including the way out of the way side trip you and Greg took to visit me!  I am confirmed in the absolute knowledge that hair and boobs and fingernails are so overrated. (Well, fingernails and toenails are nice, but they’re not part of my identity.) For a brief time, my concerns were bigger than the petty irritations of daily life. (I’ve forgotten most of that lesson. Marty says I’ll have to repeat the exercise.)  Mind you, I’m quite aware that my journey and treatment pale in comparison with yours, but for me, it was a difficult time, but not a negative time. It just was . . . only bigger.  I’m not sure it’s any more appropriate to react emotionally to cancer than it is to an “angry sea” or a “merciless desert sun.”

That’s my story and I’m stickin’ to it! Let the games begin!

From a recent episode of the fantastic series, Glee (quote from the character Shelby Corcoran, played by the even more fantastic Idina Menzel):

I wanna a look so optimistic, it could cure cancer.

More evidence that Ehrenreich’s thesis is correct.  People!  That ain’t it.

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).

In an earlier post I discussed cytomegalovirus (CMV) primarily in relation to its impact on the immunosuppressed—people with AIDS and those of undergoing a stem cell transplant, for example. As a prelude to that discussion, I mentioned that CMV causes mononucleosis.  This piqued a reader’s interest:

. . .[I] found it interesting that CMV was related to mono—I’ve had mono, though apparently tested negative twice before positive, but am CMV negative—thankfully!

Presumably, the test for mono the reader mentions was a test for Epstein-Barr Virus, and not CMV. Epstein-Barr Virus (EBV) is another herpes virus that is closely related to CMV, and EBV causes a disease named infectious mononucleosis.  CMV causes a disease very similar to mono, and many authorities call that disease infectious mononucleosis.  The Centers for Disease Control says the disease caused by CMV is a “mononucleosis-like illness,” whereas the National Institutes of Health states flatly that both EBV and CMV cause mono.  When I took microbiology, I apparently learned virology from the NIH school of thought.  But it seems more authorities discuss EBV in relation to mono, perhaps because EBV is more likely to cause disease at initial infection (even though many show no symptoms), whereas CMV usually causes no or very mild symptoms in people when they catch it.  But both are attributed with causing a disease of the same name.  So why the hell is that?

First, it’s important to note that these two viruses are quite closely related—on the evolutionary tree of life, I mean.  And so EBV and CMV share essentially all of their genes, with some minor variations (minor for sure when compared to the total genetic diversity of life, or even that among viruses). Because of this, it is no surprise that they cause similar disease.

Second, it’s also important to keep in mind that viral nomenclature is a complete mess.  The international rules of nomenclature that have been well-established in zoology and botany for nearly a hundred years (but deriving from rules that are centuries old) are simply not in place for viruses.  The best recent example of this is the HIVs.  When Montagnier in France first isolated a virus he suspected to cause the plague of immunodeficiency that was killing off mainly gay men, he named it LAV (for Lymphadenopathy Associated Virus).  Then Gallo in the USA named it HTLV-III (for Human T-Lymphotropic Virus III)—and that name is now used for a completely different virus. The virus that causes what would be named AIDS was also called ARV (Adenopathy Related Virus) for a time.  Ultimately, yet another name was established by international convention (sort of): HIV. But now we know that the thing we call HIV is in fact at least two distinct groups of viruses that entered the human population via separate events.  What a shambles.

I only point this out because this confusion about viral nomenclature spills over into disease nomenclature.  Lots of named diseases—”the flu,” “the cold,” “AIDS”—are in fact each caused by many different, often closely related but nonetheless distinct species.  And this unfortunate practice is not restricted to viruses:  Human “malaria” is caused by one of four quite distinct microorganisms, and the characteristics of the diseases they cause are just as distinct.  This is all to say that the tiny creatures that cause disease evolve just like the bigger creatures they live in. Species split, become isolated, acquire mutations independently, get different, and ultimately become two species.  Although the new species did “get different,” they also share almost all of their traits by inheritance.  Whatever characteristics the initial, ancestral species had, the two new descendant species will very likely share most of those same characteristics.  In other words, close relatives are a lot alike because they come from common stock—something we all know from our own families.  And this is why two differently named viruses can cause the same named disease (even though, in a perfect world, virologists would stop this nonsense).

So the reader is right:  One can have a diagnosis of mono without CMV, and it’s CMV—not EBV—that is so problematic for those with trashed immune systems.  All important points of clarification for those who might be facing a stem cell transplant.

The amazing Barbara Ehrenreich makes a connection, just after the crash of 2008, the 160th anniversary of the publication of the pamphlet that ignited the world:

The Manifesto makes for quaint reading today. All that talk about “production,” for example: Did they actually make things in those days? Did the proletariat really slave away in factories instead of call centers? But on one point Marx and Engels proved right: Within capitalist societies, or at least the kind of wildly unregulated capitalism America has had, the rich got richer, the workers got poorer, and the erstwhile middle class has been sliding toward ruin. The last two outcomes are what Marx called “immiseration,” which, in translation, is the process you’re undergoing when you have cancer and no health insurance or a mortgage payment due and no paycheck coming in.

You can read the whole blog entry here.  It’s an older post, but well worth the read . . . as is everything Ehrenreich’s ever written.

I’m 98.4632% sure that the comments submit button now appears.

A reader’s email:

Five hours!  Few of us healthy folks do that … at least not often enough! As we learned in desert survival school, if something CAN grow, something WILL. And that is the history of our planet.  More things grow than die.  In the midst of cancer treatment, it’s a tonic to know that.

So glad you got out amongst the living!   When you’re living “in the valley of the shadow of death”, you need to bask in the light whenever possible.

I might quibble with the assertion that “more things live than die.”  After all, every living thing dies, and 99% of all species that have ever arisen have gone extinct.  And even if the reader’s assertion were true, while such a rule would apply to “me” (the original “me,” that is) and my new stem cells, it would also apply to my cancer with equal force.  Cancer is life too, and it is struggling to live, just the same as the “me” that does not include the cancer—a majority of “me,” the original “me,” the un-mutated “me,” but not quite all of me.

But the central message of the email is clear:  I have reason for hope.  And despite my usually squinty-eyed, suspicious, sardonic predilection, I agree.  And I am glad to be among the living.

Today, Greg and I (masked and gloved) went to Walden Pond for a second visit, this time with our dear friends Alison and John.  We hiked the trails for a few hours.  There was life all around us—trees, insects, birds, and mammals were obvious everywhere we walked.  Walking with my loved ones, I thought of Thoreau.  Thoreau saw majesty in the smallest creatures.  As he famously wrote in Walking:  ”In wilderness is the preservation of the world.”  So much of my existence lately has been about killing bacteria, and killing viruses, and killing cells, and killing . . . and fear of death. Today was only about life, and living.  I needed today.

After Walden, we went into Concord and walked around, saw the beautiful Concord Library, Sleepy Hollow graveyard, and other historical landmarks.  It felt great to get out, especially at Walden and in Concord, where so much important American history took place—and where the words that would change my life and influence me to want to become a biologist and activist were written.

Were it not for Thoreau, and Emerson, and Alcott, and (to a lesser extent) Hawthorne—but especially Throreau—I might not have become a biologist, and so might well not be in a position to understand what is happening to me right now—my stem cell transplant.  I might not have become an activist, and so might not have the spirit to confront and challenge my physicians when needed. I can say honestly and with no hyperbole:  These qualities—a love and knowledge of Nature, and a rebellious bent—have been utterly essential to my survival since diagnosis.

So, today reminded me of my past, but also gave me hope . . . faith . . . for the future.  I remembered how important Nature is to me, and how important being with Nature is to me.  And I saw the power and majesty of Nature, if only briefly.  And today reminded me of rebellion, and of being young . . . and strong.  Today I walked, and hiked, and talked, and laughed for five hours. Five hours!  It was the most exertion I’ve had since the transplant, by far.

Today I felt strong.  Very strong.

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.