MPNforum Magazine

 Your Friendly Apheresis Guides are here to jump start the next part of your Journey

by Harvey Gould

Karen and I have been through a lot over the course of this journey—thirteen plus years with MF and as of November, 2013 adding AML to the mix. We’ve come to accept blows as a part of the package. Usually we take setbacks comparatively in stride, though admittedly we’ve had our “lows” and in November, 2013, learning that my disease had morphed into AML was a hard knock. On January 2, 2014 we returned to the clinic for a routine follow up after I’d completed my first round of 5-aza some ten days earlier, and eleven days before I was scheduled to begin my second round. We had intended to take a “chemo vacation” to our country house before starting Round Two,

However, that day we learned that my WBCs, which had been up to 103,000 as of the end of the first round of 5-aza, had soared to more than double that number since then and were at a whopping 235,000. When we learned the significance of that number we were stunned. We didn’t seem to be catching a break. Just a little over a month earlier we’d been told that my MF had morphed into AML and that I was heading toward an SCT. That was tough to hear, but we’d acted quickly and made plans to deal with it.

I was in the middle of a 5-aza chemo regimen and was prepared to undergo as many cycles as necessary. We’d accepted the reality of my situation and we knew that no longer would I be fighting skirmishes with the enemy. This was going to be a down and dirty head on nasty fight, but at least we had a plan. The plan started with the 5-aza, and with its routine (seven days of consecutive chemo, then going off for three weeks, and then repeating for perhaps two, or three or four cycles,) we thought at least we’d bought some time to wrap our heads around what was happening and what was going to happen down the road. Then, in an instant, even that small sense of comfort all went to hell in a hand basket.

Dr. Demon (our family’s name for my hem-onc, Dr. Damon) had just  told us that the wildly accelerated WBC proliferation to 235,000, especially in the face of just having received a seven day course of 5-aza, meant that my AML was raging out of control; that with WBCs at 235,000 I was a ticking time bomb for a heart attack or a stroke; that I needed to have apheresis done that very night, immediately to bring down the WBCs from their crisis level; and that the next day I would be put on an aggressive chemotherapy regimen.

“If you agree to the hospitalization I’ll get that admission process started.”

Of course the doctor was right. There was nothing to think about. Dully, I shook my head and said “Sure.”

Knowing that he hadn’t used a lot of words, but that he’d said a lot, the doctor said, “I’ll leave the room to the two of you for a few minutes” and he quietly closed the door behind him.

Neither of us spoke for a while. We just sat there, each slowly absorbing the clobbering the doctor had just delivered. Karen put her hand over mine.

Finally, she said,  “Well, this is it, the day we’ve feared, but the day we knew was coming. It’s just our luck that you can’t ease into the transplant, but rather, get thrown into this fight without warning. But Harvey, you’ve got to promise me that you’ll fight. I know you can do this, but you can’t enter the hospital with your head bowed. You’ve got to enter as mentally prepared as possible. Tell me you’ll fight. I need to hear it from you.”

“I know,” I said. “Just give me a few minutes to collect myself.”

We moved to the waiting room until receiving advice from a nurse that Admissions at the hospital was now ready for us. I nodded, acknowledging having heard her, but continued to sit there quietly and to compose myself. Karen sat patiently next to me, just holding my hand.

I knew full well that this wasn’t just my fight; it was Karen’s and my fight. Ever since the onset of my MF our lives had been turned upside down. Now, it was about to happen again. But this time we’d no longer be able to live with three month check-ups, a jiggering of the meds, an occasional transfusion, and living with the ever-present daily consequences of the MF to which we’d adapted incredibly well. We both knew that we were entering an entirely new, and scary, phase of this journey.

The monster that I’d hoped had retreated to his cave instead had reared his ugly head and in all his fury made clear that he was ready to take me to hell with him. I admit to being scared and shaken, and as I sat there, tears welled into my eyes, but slowly a cold resolve came over me, a resolve that had been building all those years.

This is no time for self-pity I thought to myself. These cards were dealt to you a long time ago and wallowing in “why me?” territory is a waste of time and is beneath you. You came to terms with that issue years ago. Now, just go do what you know you’ve got to do. I wiped away my tears and I said to Karen, “I am ready for this fight. If this fucker thinks he can take me down, he’s in for a big surprise. For you and for me, I am going to give this bastard a fight he’ll never forget. Let’s go beat the shit out of him.”

Karen squeezed my hand and smiled at me. We left the clinic and, arm-in-arm, crossed the street and entered the hospital.

All those past years, of course, the medical issues were always in our face. You couldn’t escape them—this procedure; that test; this drug; that surgery, participating in a clinical trial. We’ve seen so many doctors over the years that we’ve developed what Karen calls our “ist” list, including several hematologist/oncologists; a nephrologist; a urologist, a cardiologist; an orthopedist; a neurologist; an internist; an endocrinologist; and a chef (OK. Just checking to see if I could catch you napping.) Still, somehow, each time we’d leave the clinic with a three-month follow up, even though there may have been some procedure or multiple appointments with other ists in the last quarter, or perhaps coming up in the next one, we’d both feel a sense of relief—as though we’d been temporarily released from the hold of the medical system and we reveled in that wonderful sense of freedom.

Now, having lived through my past history with MF, and then having accepted that I had AML, we hadn’t dilly dallied. We’d acted, but now we were entering the hospital, knowing that I was in crisis and needed immediate and urgent measures if I was going to survive. (In that moment it came to me, what MF really stood for.)

By the time I got to my bed in the BMT division of the hospital, the staff was ready for me. I couldn’t have been there more than half an hour before being whisked away to the Apheresis facility, right within the BMT Unit. It has six beds, but since this was already early evening I was the only patient in the facility. And so, Karen was invited in and, but once again, there she was right next to me.

They didn’t access my port for the apheresis because the area was still raw, having been surgically implanted only six days earlier. As a result they put an IV line at the bending point of each arm. My job was to keep my arms still during the entire process. Of course it is at just such times that you develop a terrible itch on your nose, but I fought off the demons and kept my arms still throughout the roughly three-and-a-half-hour procedure. Once they’d finished, the nurse helped slowly bend each arm and it was only then that I knew the pure pleasure the Tin Man had felt upon his initial oiling.

Meanwhile, by the time we left the Apheresis Unit for me to be returned to my room, literally hanging on a pole was a bag filled with my WBCs which gave me an eerie feeling. As it turned out, by the apheresis they knocked down my WBCs by 132,000, thus bringing my level to 103,000, an amazing result.

But equally amazing is that in the course of the next day, before I got started on chemo, my WBCs  already had managed to jump back up to 153,000. I recalled a scene from a movie (Butch Cassidy?) in which a coalman was scraping shovelfuls of coal and flinging them into the already hot-burning engine to make the engine run faster, hotter, faster. Just like that engine, my WBCs were on fire and my engine was roaring forward. These WBCs weren’t going to go easily into the night.

It was time to counter punch this sucker, and that part of the fight started the evening after the Apheresis.
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