Wednesday, January 27, 2010


The transplant is now six weeks in the past, and I have been home for three weeks, and it is probably time once again to provide a synopsis of my physical and mental states.

As I mentioned earlier, my blood cell counts seem to have recovered, and I am pretty much recovered from a recent mild cold, which means that the immune system must be working properly to some degree. The chemotherapy-related symptoms all seem to have largely dissipated -- all, that is, except for the intermittent fatigue. This is frustratingly inconsistent in its effects. One morning I may awake thinking that I should take Mount Everest by lunchtime, and then the next morning I may have to talk myself into just getting out of bed. In any case, unless the weather is very bad, I try to get in a walk each day. The interesting thing is that, once I get moving, any fatigue I happen to have been battling against that day seems to fall away. I have been slowly pushing out the distances on these walks; at this point, I think I am covering about a mile. Mind you, I am not covering it very quickly; it usually takes 35 to 40 minutes. Also, as I come into the home stretch, I begin to tire, which causes me to begin leaning more heavily on my cane, which in turn causes my back to hurt. So although it seems to me that I'm gaining strength and stamina, I still have a long way to go. In particular, lifting and carrying anything of any weight at all seems inordinately exhausting. By now I'm used to climbing stairs without fear, but that seems to take a lot of effort as well. If I perform some series of tasks of apparently no great difficulty, such as, say, first climbing the stairs to retrieve a new light bulb, then climbing a step ladder to perform the replacement, then putting the ladder away, I have to conclude the operation by lying down for a little while, to recover. I don't consider this normal, and it's something I have to work my way past, eventually. If I can't seem to get there on my own, then I will return to physical therapy.

My appetite is probably still a bit short of being completely restored, but it's very good. I have gained about five pounds since I returned home, which means I'm still about fifteen pounds down from my "normal" pre-illness weight.

As long as I'm careful to avoid taking any long naps in the afternoon,
and to avoid caffeine in the evenings, I sleep well at night. If I wake up to go to the bathroom, I usually go right back to sleep.

I'm trying to resume some of my old household jobs, such as paying bills, and running loads of laundry (which is another example of a physical task that takes more out of me than it should).

I didn't so much as turn on my work computer for two solid months, beginning with the preliminary transplant steps, but this week I finally did that (and was confronted by a mountain of 1600+ e-mail messages). Depending on my energy levels, I am going to try to ease myself back into that world over time -- assuming that the oncologists, the jealous gods of my world, don't suddenly project me into some fresh hell,
based on the alchemy of their tests.

Monday, January 25, 2010

A Reunion

This past Friday I enjoyed my first consultation with the Christiana oncologist since before the transplant. He was armed with all the material relating to the transplant sent to him by Johns Hopkins, plus a couple of sets of blood tests run since I returned home, a week or so apart. He is happy with my blood counts -- so happy that he sees no reason for me to undergo any further testing in this area until after my 60-day evaluation at Hopkins, which has been scheduled for 18 February. He doesn't want to see me again until then, either. Of course, in the meantime I'm to alert him immediately if some infection evades the antibiotics and antivirals I'm now taking daily, and I begin to run a fever; I could still be in serious danger if something like that were to happen.

As if on cue, this past weekend I began to exhibit some of the symptoms of a classic head cold: a mild sore throat, followed by serial sneezing and draining sinuses, and a bit of random coughing. So far, my immune system seems to be handling the matter as if nothing ever happened to it. My temperature hasn't done so much as edge above normal. Obviously the situation bears continued close surveillance, but so far there seems to be practical evidence that the transplant worked -- at least the stem cell reinfusion part of the transplant.

As for the chemotherapeutic part of the transplant, that is another matter altogether. I received my schedule for the 60-day evaluation, and it seems to consist of a battery of blood tests and a biopsy of
bone marrow taken from the hip. I solicited the Christiana oncologist's opinions about this plan, reminding him that, in my case, he had been originally unable to arrive at a definitive diagnosis with almost exactly the same set of tests; such a diagnosis was eventually based primarily on a biopsy of material taken from the spinal tumor. He conceded the truth of these assertions, but declined to offer any possible alternative testing plans; clearly, he thinks this particular ball remains strictly in the Hopkins oncologist's court. So, I will have to make the Hopkins oncologist educate me about how exactly it is possible to tell what if any effect the transplant had on the cancer itself, since right now I am frankly lost on that score. I don't think I can wait until my February visit to begin warming him up for this. He may come to regret having given me his e-mail address; certainly the Christiana oncologist has been careful not to make that mistake.

Monday, January 11, 2010

Homage To A Caregiver

At the moment, I'm in a sort of hiatus period. The team at Johns Hopkins doesn't want to see me again until the middle of February, which is when they will begin to try to determine the degree of success, vs. the cancer, that should be assigned to the chemotherapy part of the transplant. Meanwhile, the Christiana oncologist will be monitoring my recovery, mostly just looking at weekly tests of blood counts and electrolyte levels. I once again lost ground on strength and stamina in the course of undergoing the transplant, so recovering and advancing those will once again be my main job for awhile, alongside taking the antibiotics and antivirals that have been assigned to me. So I am at liberty to consider some things that might have fallen by the wayside in the heat of battle.

One thing I should do is try to provide some idea of what Huong had to cope with while playing the mostly thankless caregiver role in my transplant. I think I mentioned in an earlier post that, until fairly recently, stem cell transplants were inpatient affairs to a much greater degree than they now are. Formerly, there really was no "caregiver" role, until the patient had been discharged to go home, after which the caregiver's main responsibility was to watch the patient for signs of infections that needed to be nipped in the bud. But as transplants shifted more and more to being done outpatient, the caregivers awoke to discover themselves having to be 24/7 nurses for persons they thought they knew, but who were now rarely themselves, and not in good ways.

In some ways, our situation in Baltimore was nearly ideal. We had a very nice apartment in a building right across the street from the cancer center. If I was feeling so ill that even this seemed to be too far away, we could take one of the shuttle buses that ran hourly between the buildings. The apartment had its own refrigerator and cooking facilities, and its own clothes washer and drier. The main bedroom could be closed off from the rest of the apartment if necessary.

But for some time, Huong had trouble keeping me fed, no matter what she cooked, because of my growing nausea and mucositis. Nothing smelled or tasted good to me for awhile; or, even if it did, I would have trouble getting it down.

In addition to of course our clothing, we were responsible for laundering the bed linens. The machinery was of the stackable, small-volume type, meaning that Huong pretty much had to do at least some laundry daily, especially after my diarrhea began and then became progressively less controlled.

For awhile, the chemotherapy seemed to affect both my short-term memory and my ability to focus on the details of tasks. For example, the daily pilgrimage to the IPOP clinic involved getting myself fitted out with the necessary outerwear (hat, gloves, etc.), my surgical mask, and my cane, which seems slam-dunk easy; but for the first couple of weeks after the chemotherapy, I would occasionally forget one or another of the necessary items, not realizing that I was missing anything until we had reached the main lobby of the apartment building, or the sidewalk outside, thus requiring Huong to return to our room to fetch the item (requiring me to do this myself, while perhaps serving justice, would have taken too long).

But possibly the hardest part of Huong's job in Baltimore was simply grinding through the daily routine: repeatedly shoving the big, sick guy around to where he needed to go, more or less on time; making sure he wasn't run over crossing the busy intersection on the way to and from the cancer center; lugging the bag of medications and other stuff that we were supposed to take to the IPOP clinic each day; trying not to be overcome by boredom while awaiting my daily test results; asking the questions that I was too sick or too tired to ask; waiting in line for me at the pharmacy; flushing my catheter twice daily; wrapping up my catheter dressing for showers; and on and on.

If you had to pick the most important aspect of her involvement, though, you would choose the element of moral support. Holding me when I was under violent assault by the side-effects; firmly grasping my arm as we crossed the icy street;
rounding up drinks for me when the nurses seemed too busy; presenting a reassuringly familiar presence when I was otherwise surrounded by strangers in the inpatient ward; walking alongside as I dragged my IV pole around the corridors for exercise; being a beacon of the normal in what often seemed a maelstrom of the abnormal. These seemingly simple things, combined, probably prevented me from disintegrating altogether at some point. As my moment of peering into the abyss begins to recede into the past, I'm pretty sure I will never find a way to repay her for them.

Friday, January 8, 2010

Back In Avondale

I was formally discharged by the Johns Hopkins IPOP clinic on Thursday. The whole thing could not have been more anticlimactic. Since I no longer had my catheter, there was no attempt to draw blood for testing; only my vitals were taken, after which I and perhaps seven or eight of my fellow patients and our caregivers were herded into a conference room for our final debriefing. This consisted mostly of a review of the "life after the transplant" materials that I described in the previous post. The content of these materials varies with the precise nature of the procedure one has undergone; the allogeneic transplant patients for example received stuff about Graft Versus Host Disease (GVHD) that was entirely absent from my package. After this session, there was nothing left to do but to just go home; we arrived here in the early afternoon.

I have a couple of additional observations about the transplant procedure that I'd like to record here, that I'd prefer not to forget.

The entire transplant procedure was carried out with minimal involvement by MDs. I encountered MDs in the initial consultation; at the consent signing; at the catheter installation; and daily (but very briefly), when I was an inpatient. On Christmas night, I was converted into a inpatient by the after-hours on-call IPOP MD. But otherwise, all the work was carried out by RNs, nursing assistants, and various medical technicians. Although the RNs had all received special training in oncology, there is no specific certification around this, as there is for example around anesthesia (an RN must be a CRNA to carry out anesthetic procedures). The daily outpatient show in the IPOP clinic was run by a Certified Registered Nurse Practitioner (CRNP). I have to confess that I haven't really figured out CRNPs yet; the legalisms around them seem to be changing as I write this. But one significant power they do possess is to write prescriptions. Nearly all the medications I received in the course of my transplant were prescribed by the CRNP.

I was rarely seen by the same RN from day to day. Each day, upon arriving in the IPOP clinic, I would sign in, and then consult a whiteboard carrying the day's patient-RN assignments. Furthermore, the RNs often worked long shifts, in which case they wouldn't be present on consecutive days. And they were also rotated between the outpatient clinic and the inpatient ward. However, they apparently had their patient status recording system down cold, as I saw few if any problems relating to the loss of information, or the introduction of misinformation, about my case occurring because of the endless hand-offs. In the end, though, there were very few RNs we felt we knew well enough (or could find) to say "goodbye" to before we left the IPOP clinic for the last time. As we departed, the IPOP machine continued to click along, seemingly oblivious to our existence.

Monday, January 4, 2010

Partially Unleashed

This morning, after getting blood taken for testing for the umpteenth time, my catheter was removed. All I have to show for it now is a dressing that will be removed in a few days. The procedure was substantially less involved than was the installation: basically a firm tug, and it was all over.

I'm not exactly sure what life is going to be like for me in the short term, once we have returned to Avondale on Thursday. The materials I have been given so far touch on the following points:

I'm expected to visit the Christiana oncologist once a week for the first month, then biweekly for the next couple of months, then once a month going forward. He is supposed to apply more or less the same tests that I have been getting in the IPOP clinic, and topping me up with electrolytes and/or blood as required. I'll be getting deeper tests (bone marrow aspirates, X-rays, CT scans) on my return visits to Hopkins (60 days, 6 months, 12 months).

Even though my counts are back to normal, my immune system will not
really be completely restored for another 6 to 12 months. I will continue to be vulnerable to certain types of infections. I will continue to need to wear N95 respirator masks in certain situations. Crowded places will be particularly problematic; I will have to regard airline travel with grave suspicion.

My childhood immunizations have been eliminated and will require restoration. My immune system won't be ready to begin the process for another year, though, and I won't be able to get any live vaccines for two years. I will be particularly vulnerable to VZV (Chicken Pox / Shingles); I will have a 40% chance of getting a VZV-related illness at some point.

I am likely to continue to struggle with fatigue for another year. Progress will not be monotonic; I will have bad days following good days.