My continuing lymphoma adventures: "We've chosen the rock"

My continuing lymphomatoid adventures

     As most of you know (though I've never mentioned it here), I’ve been ill with diffuse large B-cell non-Hodgkin's lymphoma for some time now. 

     On April 19, after many months of increasingly poor health—bouts of extreme anemia (sending me twice to the ER) continual shortness of breath, extreme weariness—I became so weary (zero energy; tendency to just sleep; continual imbalance) and underfed (no appetite; extreme weight loss) that my bro, Ron, felt the need to take me to the Hoag emergency room; that became a five-day stay at the hospital in Newport Beach. (Suddenly, I was compelled to abandon all notions of privacy and what people used to call "modesty." Non-sickies, you have no idea. A shout-out to the fine nurses at Hoag/NB!) There, tests confirmed what we suspected: I have lymphoma. (In January, my oncologist had initially guessed that I have myelodysplastic syndrome - MDS, a blood cancer.) 

     I’ve been staying with my brother’s family here in Irvine ever since, and I’ve been doing better and better. A shout out to my bro and his entire family, including Karl, the wonder-dog. (Colleague and friend Brittany visited a couple of times here at chez Ron's; she was so impressed by Karl—his striking beauty and friendliness—that she went out and adopted a GS mix, a puppy! I met this pup: very sweet and beautiful.)

     My chemo regimen (R-CHOP*), which commenced at the hospital (April 20), comprises six cycles, separated by 3 weeks. So the whole process should take only about 18 weeks. —Unless there are complications.

     After my 2nd infusion (chemo cycle 2), in May, I did very well, though my hair fell out, which was cool. (I've taken to wearing baseball caps, less cool.)

     That's when things started going south. Not the hair, the blood. I was found to have an extremely low platelet count. Platelets are among the three kinds of blood cell produced by the bone marrow (RBC and WBC are the others); they are necessary for clotting; without enough platelets, if you bleed significantly (e.g., internally), you bleed out. So giving chemo, a strong poison, to a patient with very low platelets is risky, especially when the patient is injured in some way.

     Hence, through June and much of July, we’ve been forced to take various stop-gap measures, such as white blood cell boosters, blood transfusions (to combat anemia), etc. 

     Chemo was on pause. Not good. (At one point, I asked Dr. N whether this pause diminished the effectiveness of the chemo regimen. In characteristic N fashion, he just said "Yes." I asked for no details. As a cancer patient, there's such a thing as having too much info, I find.)

     After my second bone marrow biopsy a couple of weeks ago, a challenging procedure that nevertheless provides good info, my doctor strongly hypothesized that, as earlier suspected, I also have MDS, a blood cancer, and that—and not the lymphoma or chemo—caused my low platelet production. An examination of my blood history seemed to confirm this: I've always had low platelets. (I figure it's like unknowingly always going around with just a half-tank of blood. Pretty dicey. I suspect that most of us are in such an oblivion somehow.) So, last Friday, as my platelets seemed to be heading upwards, it was decided that I should continue the chemo regimen at the 1st opportunity. I was all in favor of that.

     That brings us to today, infusion day, the long awaited chemo cycle 3 that should have occurred a month and a half ago!

     This morning, just after 8:00 a.m., I had my usual pre-infusion blood test, and it revealed that my platelets numbers had plummeted yet again. Good grief! The nurse sought the advice of my oncologist via phone. I was not hopeful. She just came back with that. 

     So there's good news and bad news. The bad news is that, worrisomely, my platelets count has taken another dive (down to 52 from 72; normal is between 150-400), and thus continuing the chemo will be risky. The good news is that, nonetheless, we'll proceed with the chemo today. Why? I think it's because of the higher risk of pausing cancer treatment for so long (just a guess, though a plausible one; I've not spoken with anyone except the excellent infusion nurse; one learns not to insist on an immediate confab with the Doc every time something happens; it's unnecessary and it just pisses them off; I'm speaking as one who has had lots of experience with doctors in the last year or so).

     And so I'll be here at the USC/Norris Cancer Center in Newport Beach until 5:00 p.m. or so. Some R-CHOP infusions—e.g., the first one—are an all-day affair. Lots of interruptions: supplementary substances beyond the chemo are put in the IV, and one is informed of each supplement. Unless they say something like, "be advised that this could kill you," I don't pay attention, I say "sounds good," and then I just go back to sleep. (One of the first IV additives is a sleepy-time pill.)

     My doctor (and me!) are, of course, between a rock and a hard place. We've chosen the rock. I like the rock. Being back on chemo, despite the side-effects and risks, is a good thing.  

     Still, I suspect that, before I leave today, I'll get a lecture about how now is not a good time for me to take up wrestling or even mumblety-peg. 

     Teddy and Karl say “hey!”

*According to Google, "R-CHOP is a combination of five drugs that work together to target and kill cancer cells. It's a first-line treatment for aggressive non-Hodgkin's lymphoma, a group of blood cancers. Most often, R-CHOP is used to treat the most common form of non-Hodgkin's lymphoma called diffuse large B-cell lymphoma (​DLBCL)."

[R-CHOP is] A regimen consisting of cyclophosphamide, doxorubicin, prednisone, rituximab and vincristine that may be used for the treatment of AIDS-related B-cell lymphomas, Castleman disease, chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL), diffuse large B-cell lymphoma (DLBCL), follicular lymphoma, gastric ...

Be of good cheer!

P.S. (July 22): upon completion of yesterday's infusion, which ended at about 4:00 p.m., what the nurse actually advised was, "Don't be partying; stay home and rest." 

     And what about the MDS diagnosis, which, as far as I know, still stands? A: I don't know. I've had no conversation with Dr. N, my oncologist, since this latest development. But we did discuss my prospects were I to have MDS—the initially favored hypothesis/diagnosis way back at the beginning of my relationship with the fellow in January. I seem to recall he gave me a vague picture of "lots of things could happen" plus he exhibited no great concern, always a good sign, I figure. But who knows. I'll likely talk with N within the week. I still hope for what counts as a "full recovery," which is possible with my kind of lymphoma, though it might not be for MDS, if indeed I have it. 

     Things sure do get complicated.

     It feels inappropriate talking about myself so much. Such yammering eventually makes me shudder and hide. So I'll shut up and go back to monitoring politics. Very interesting; very distressing. Sheesh! Anything could happen! A political era sui generis.