Wednesday, June 28th, 2017 Baltimore, Maryland Really
ICE
I think that my head is smaller
Bill Bryson's "One Summer: America, 1927"
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Thursday, June 15th, 2017 Baltimore, Maryland B-cellsRed blood cells nourish the body; white blood cells protect it. There are different types of white blood cells, each serving a slightly different purpose. One such type is the B-cell, pictured at right. Its surface is populated with antibodies (blue) that can bind to different kinds of foreign bodies (a.k.a. antigens). Once bound, the B-cell spawns many more copies of the matching antibody. I mention all of this because my official diagnosis is diffuse large B-cell lymphoma. Aside: Why are they called B-cells? I've wondered this for a while so I looked it up. In mammals, B-cells mature in the bone marrow; in birds, B-cells mature in the bursa of Fabricius, an obscure (at least to me) lymphoid organ. Somewhat surprisingly, it is bursa that lends the B to B-cells, not bone marrow. RituximabRituximab is the "R" in my chemotherapy cocktail (R-ICE). Strictly speaking, Rituximab provides immunotherapy, not chemotherapy. It leverages your own immune system to destroy malignant (as well as healthy, unfortunately) B-cells. Here's how it works. B-cells are special in that their surface is populated with both antibodies (blue in the picture from the previous section) and antigens (green). These antigens are obviously not foreign bodies but they act in the same way. (In fact, the word antigen is short for antibody generator -- anything that causes antibodies to be generated.) Rituximab is a synthetic antibody that has been engineered to bind to one of the antigens (CD20, if you are curious) that is present on most B-cells. Once the B-cells are bound, other parts of the immune system (a.k.a. natural killer cells) sweep in and destroy them (a.k.a. cell lysis). Pretty nifty, eh? This wonderful little antibody was created by researcher Nabil Hanna and his coworkers at IDEC Pharmaceuticals. Rituximab has proven so useful for a variety of conditions in which B-cells go awry that it is included on the World Health Organization's List of Essential Medicines, a list of the most important medications needed in a basic health system. Aside: I realize that Rituximab doesn't start with a "B" but it does end with one. Brady Coyne MysteriesI mentioned recently that I have been reading a lot this spring as my body slowed down, preventing more active pursuits. The bulk of that reading, 25 books in all, was the Brady Coyne Mysteries by William G. Tapply. Tapply was a high school teacher for 25 years before becoming a full-time writer. He was a lifelong New Englander, avid fly fisherman and dedicated smoker, three characteristics that he shared with the protagonist in his novels, Brady Coyne. The similarities stopped there, however. Coyne is a Boston lawyer that caters to wealthy clientele that seem to experience their unfair share of murder and mayhem. Since divorces, wills and estate planning isn't exactly thrilling work, Coyne spends a good deal of time investigating those murders personally. Clearly imperfect, Coyne is sufficiently complex to keep one reading almost to the 25th book. By the way, what's next?Tomorrow is the second day of this three-day chemotherapy cycle. That means another eight hours of chemotherapy (like today), along with a lumbar puncture throw in for kicks and grins. At some point, the brain fog for the cycle will settle over me and then these blog entries will either (A) stop for a while or (B) become incoherent. I'm hoping for (A).
Tuesday, June 13th, 2017 Baltimore, Maryland HemoglobinHemoglobin is a wonderful little protein in your blood that binds to oxygen in your lungs and then delivers that oxygen to the rest of your body. If you have insufficient hemoglobin in your blood, then you've got insufficient oxygen in the rest of your body, including (eventually) your brain. Oxygen deprivation (hypoxia) in general is something best avoided. One common but unfortunate side effect of both cancer and its treatment (chemotherapy) is that they can drive down your hemoglobin. When that happens, your body slows down to a sluggish halt and the thought quickly surfaces that "something isn't right here." The remedy for low hemoglobin is easy enough: a blood transfusion -- fresh blood infused with normal volumes of hemoglobin. Thus I find myself back at JH today, with Alison by my side of course, to receive a couple of pints of new blood. AntibodiesBack in middle school, we all learned about blood typing and matching -- who can give to whom. I remember none of it except for the fact that there is some blood type known as the "Universal Donor" and another that is the "Universal Recipient." I'm drawing a blank on everything else and I haven't been ambitious enough to look it up. One thing that I have learned about is antibodies. If you think of "body" as meaning "foreign body", then the definition of an antibody makes sense: they seek out and bind to foreign bodies (a.k.a. antigens) so that other parts of your immune system can sweep them up and purge them from your body. As with anything in your body, sometimes things can go awry. In the case of antibodies, for example, they can mistakenly identify a native body as foreign which leads to good cells being purged. In my case, my blood contains antibodies that seek out native bodies that occur normally in the blood of most (but not all) people's blood. So, in order for me to receive a transfusion of blood without my own antibodies attacking the new blood, the blood bank needs to track down blood that does not contain the native bodies in question. That often takes a very long time (8-9 hours), yielding in turn a lot of thumb twiddling here at the infusion center. The Wright BrothersAs my body slowed down more and more earlier this year and before I knew why, I took the opportunity to read a couple of dozen books. Here's one of them. The Wright Brothers is a recent book by David McCullough, the winner of two Pulitzer Prizes for his books Truman and John Adams. Before I read this book, I knew only the very basics about the Wright brothers:
(1) "Widely considered to have invented..." does a disservice to the Wrights. Although various other people were trying to invent a flying machine at the same time, none of them was remotely close to success. The Wrights were clearly and unambiguously the thought leaders in the mechanics of avian flight and how they could be (and were) successfully applied to manned flight. (2) The Wrights did spend time in Kitty Hawk in order to take advantage of the plentiful winds and soft sand, but their base of operations and invention was definitely in their home town of Dayton. For the tourism bureaus, Dayton deserves the credit and Kitty Hawk should get honorable mention. (3) Their mother died young and father was a traveling preacher. Of the five surviving siblings (twins died in infancy) Wilbur, Orville and their sister Katharine became very close. When the brothers were away (which was often), Katherine managed both the household and the family bicycle business. (4) The Wrights offered their invention for sale to the United States government but received little more than a courtesy reply. That's because the Smithsonian was funding a similar machine of their own being developed by Samuel Langley (it never worked). So, they took their business overseas to the French, first and foremost, but also the Germans and Italians. They were warmly welcomed there. (5) Neither brother ever married. Wilbur died from typhoid fever at the age of 45. Orville lived until the age of 76. Although both brothers accumulated moderate wealth in their lifetimes (Orville in particular) from their invention and various patents, neither amassed anything close to the enormous fortunes of the railroad barons of the era. What's next?18 daysWe returned to Richmond late Tuesday night after 18 days in Baltimore. The front nine were spent as an inpatient at Johns Hopkins Hospital, the last three of which represented my first three-day cycle of chemotherapy. The back nine were spent at my sister's home nearby in order to accommodate (A) some followup appointments and (B) a general feeling of safety in being so close to JH in case I had an adverse reaction to the therapy. After nine such days, we felt confident enough to return to Richmond. My next cycle of chemotherapy is scheduled for next Thursday through Saturday, June 15-17. We anticipate three cycles in all, give or take. It is an iterative process: you get some therapy, then look at the current state of the disease, then decide what's next. For those of you in the software development world, it is very Agile. At this point, I feel half-decent. I can put in a solid but abbreviated day of work, punctuated by at least one nap. Life could be worse! About those morphinsLast week, returning from a longer-than-usual walk around the block with Alison and clearly tired and winded, I said to her: "Well, that can only be good for my [withered] muscles." To that Alison waved both of her hands in a zigzag pattern up and down my body and said: "That is going to be good for all of your little morphins." A morphin, I therefore deduce, must be a single, microscopic unit of health and wellness. I expect that they reside in my brain in untold numbers. PhotosTidbit
Bozeman is outAs much as we were looking forward to our trip to Bozeman this summer, my doctor vetoed it. And just to prove his point, he admitted me as an inpatient to Johns Hopkins Hospital to determine exactly what had been ailing me of late. Johns Hopkins is inYou might recall that back in 2001 I was diagnosed with Hodgkin's lymphoma. I was treated over the course of three years with radiotherapy, chemotherapy and more radiation. At that point, things were relatively stable. Flash forward to this year. I've been feeling lousy all year, getting worse each day, to the point that I couldn't even sit up for more than 5 minutes at a time. I was admitted to Johns Hopkins on Saturday, May 20th and they've run a lot of tests. After a couple of diagnostic twists and turns, they found malignancy in my bone marrow. It's been identified as non-Hodgkin's lymphoma. The treatment is 2-3 months of the ICE-R chemotherapy regimen followed by a stem cell transplant. The transplant itself involves 75 consecutive days of outpatient treatment plus another 9 months of close monitoring. My name is Daffy DuckOne of the common side effects of ifofsamide (the I in ICE) is delirium, as per my doctors. As Wikipedia reports: "A common and dose-limiting side effect is encephalopathy (brain dysfunction). The symptoms of ifosfamide encephalopathy can range from mild (difficulty concentrating, fatigue), to moderate (delirium, psychosis), to severe (nonconvulsive status epilepticus or coma)." So, each morning while I was an inpatient and receiving my first cycle of chemotherapy, my nurse would ask me my name and the current date and year. "Daffy Duck" was always my first impulse, but I never used it. I definitely have had the associated difficulty in concentrating, fatigue and I've flirted with delirium, but luckily it fell short of psychosis. WorkAs for work, I recall that I was able to work 4 days/week on average during my six-month chemotherapy regimen back in 2002. Since I've been warned that this new regimen might be a bit tougher on the body, I'm going to shoot for 3 days/week. Time will tell whether that is optimistic or pessimistic. Support Luckily for us all, my sister Susan lives in Baltimore, a mere 10 minutes from JH. This will therefore become our base of operations for the many outpatient visits that will comprise my ongoing treatment regimen. Currently on base are:
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