After 13+ years of PMF, in November, 2013 my disease morphed into AML.
by Harvey Gould
Devastated by the news I felt as though I’d swerved off the road, broke through a barrier, and had ended in a deep, dark and foreboding forest from which seemingly there was no escape. Nevertheless, my hem-onc and I agreed that I should forge on and that I’d undergo a transplant. The bone marrow transplant team initiated a search for a donor.
I started a seven-consecutive-day course of 5-aza (also known as Vidaza and azacytadine) in an effort to get me into temporary remission so that I could undergo the SCT. (This chemo only takes about 20 minutes to administer, but it can’t be prepared until the patient is present because it has a shelf life of only about an hour, so typically the whole process takes at least two hours, longer if a CBC is required before dispensing the drug.) When I started the 5-aza my WBCs were already on a rampage—at 95,000. One week after completion of what had been intended as my first round of 5-aza they had skyrocketed to a dangerously high 235,000 and that very day I was admitted to the hospital on an emergency basis.
On my first night of hospitalization (January 2, 2014) I underwent apheresis, a form of dialysis to remove as many WBCs as possible in an effort to prevent me from having a stroke or a heart attack and start induction chemotherapy with my body in better shape.
On the next night I started the aggressive course of induction chemo, including Cytarabine, dispensed for seven consecutive days on a 24-hour basis, and IDA Rubicin, dispensed for about 30 minutes on five of the seven days that the Cytarabine was being transfused. The plan was that after the chemo which, among other things, would destroy my immune system, I’d receive a series of hormone injections (Neupogen) to kick start my immune system again and to get me to start producing healthy cells after the leukemic ones had been killed off.
At around Day 30 I’d be released; spend three weeks “clearing my head and regaining strength” and then I’d return to the hospital for the transplant which would entail roughly another 30 days of hospitalization. After that second release, I’d be followed at the clinic twice weekly for the next three to four months. Undecided was whether, after my release from the induction chemo, I’d require additional hospitalization for consolidation chemo, i.e., chemo to hold together the gains made via the induction chemo pending the time for the transplant.
Nice, precise plans. I like nice precise plans. Ah, but once again, God or whatever name, if any, you choose to give to some higher power, was laughing at the edges of the stage we call life; laughing, knowing that something anything but elegant was in store for me.
On Day 14 I had a BMB to confirm that my blast level was at or under 10%, a level at which I’d qualify for the transplant. On Day 15 I was to begin the Neupogen injections, but the next day instead of starting those injections I was told that my blast level was still too high so instead of starting the hormone injections, I was put on a second round of the same chemo agents, but for slightly lesser times. I remained confident, determined not to give in to the dark thoughts camping out on the periphery of my thoughts.
I lost my hair; got bad mouth sores and a “tinny” mouth taste that created a serious challenge to eating; developed an irritating skin rash that covered much of my body; and spent most of one day retching. (I actually never vomited while hospitalized but for weeks continued to have “waves” of nausea. Since the onset of AML some months earlier I’d lost my appetite and started losing weight. That weight loss continued in the hospital. In all, I’ve lost about 35 pounds in three months or so and now weigh 162 (just gained two pounds after finally being released from the hospital.)
I received 18 daily Neupogen injections after the second round of chemo was completed and then the real agonizing began—seeing my daily “numbers” posted. Blood was routinely drawn around 4:30 a.m. By 8:30 or so the results were available and the nurse would post the “key” numbers on a large two-week chart on the wall: WBCs, Neutrophils, Hemoglobin and platelets. All had been beaten down and now they had to recover before I could be released. For over two weeks I needed a daily transfusion of platelets. I’d get a decent bump, but the next morning they’d be back in the cellar. The WBCs and Neutrophils were also lagging. Then, as though to torture me, they began to climb and with them, my spirits, only to see yet more numbers posted, showing them falling back.
At one point I was told, “You’ll be out of here by Wednesday.” That weekend I was told, “We’ll get you out of here by the end of next week.” In the end, it was the platelets that were the hold up. I’d had episodes of spontaneous nose bleeds while in the hospital and there was no way they’d release me until my platelets at least reached a modest “holding” level and showed an upward trend for a number of consecutive days—and stubbornly they refused.
The combination of the two rounds of chemo, the mouth sores, the body rash, the weight loss and the psychological “hit” from daily seeing my numbers fail to recover, all combined to make me weak—very weak—and depressed. In my head I returned to that same damn dark and foreboding forest into which I’d ventured when first I was told I had AML. I saw no light on the other side of it as something I could follow to get me the hell out of there. Karen, of course, remained my rock. She was at the hospital every day although I tried to convince her to give herself a break and take a day off here and there. She wouldn’t hear of it.
My daughters came (one from Chicago) to spend time with me. Still, I went to a pretty dark place and it was only with the greatest effort that Karen could get me to go for a walk in the hallway, along with my damnable pole. I just wanted to wallow in bed and give in to the dark forces seemingly closing in on me.
On Friday, February 14, I had another BMB. Because that was a holiday weekend, the labs were closed so we wouldn’t know the results until the following week, but on Saturday February 15, Day 44 of my hospitalization; I was released, with an appointment to return to the clinic on Wednesday, February 19.
With a modest sense of reinvigoration simply from being out of the hospital, Karen and I met with my hem/onc as scheduled—only to learn devastating news. The second round of induction chemo also had failed to get me into temporary remission. My date for the transplant was off the table.
The Bone Marrow transplant team, which had found a donor for me, was attempting to convince the donor to agree to the indefinite delay for the harvesting of his or her stem cells (the stem cells remain viable only for 72 hours); and I felt like a dead man walking as I saw my CBC results with my WBCs, which I’d urged to rise while I was in the hospital, indeed once again rising—above high normal.
Still, driven in large measure by the simple fact of how much I love Karen and how fiercely I refuse to leave her without fighting my last fight, two days after learning this news, I began another round of 5-aza, this time with my WBCs, though above normal, still in far more acceptable range than when I’d first undergone that treatment. I’ve finished that first round; Karen and I got to spend the weekend after that completion at our country house for the first time in over three months and we reveled in that “vacation.”
On Monday, March 3, 2014 we were back at the clinic. My blasts were still high—very high—but my hem/onc, Karen and I agreed that we’d forge on and that rather than waiting three weeks to do another round of 5-aza, we’ll be aggressive and wait only two. In my heart but now openly I thank my doctor for not giving up on me—that’s Dr. Lloyd Demon. (Though his family knows him as “Damon” our family knows him by his dubbed name for all the rotten news he’s had to impart over the years.)
Will I make it? I don’t know, but I do know that I now view each day as the gift of a lifetime. I know that as long as there is a chance, any chance for me to have many more years with Karen, I will not quit trying. I know that even as I may again temporarily retreat into that damnable dark and foreboding forest, some part of me, using whatever remaining strength I have, will try to find a way to emerge from its trap and reenter good health.