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My First Cycle on High Dose Interleukin-2

Posted by on February 15, 2010 in IL-2, Immunotherapies (IL-2, IL-15, PD-1s, etc.), My Health Updates - No comments
snow monkeys


Once they started coiling battery wires (intertwined IVs, whatever) through my bicep, I knew something had gone awry with my vacation. The wires, a PICC line to be specific, ran to my heart, delivering large quantities of interleukin directly into my bloodstream. The juice itself is the color of long-spoiled chocolate milk and is sucked through a slow-drip into your veins until is hangs deflated on its hook, sunken and sad-looking.

We were in a room on the 9th floor dedicated to cancer patients receiving unusual treatments and leukemia patients receiving bone marrow transplants. It’s referred to as an Intensive Care Step-Down Unit. Which means, basically intensive care but you get privacy and extra comforts. Dena and my mother both sat vigil at my bedside the entire time, for which I am eternally grateful, because things started going downhill shortly after the nurse left the DVD library list with me. (I watched Raiders of the Lost Ark, by the way, which still holds up after all these years.) By the second or third day my resting heart rate – which is defined by me laying sweat-drenched and brain-addled in bed, no activity to speak of – was in the 120s and would soon hover around the 130s and 140s. As my nurse put it, my heart was under extreme distress, as if the bloody little bastard had gone off by itself on a treadmill to prepare for a marathon.

Meanwhile my oxygen intake dropped and they were forced to insert one of those little tubes with dual-nostriled nubs around my face to pump in more oxygen. They itch, by the way. My asthma started to kick but they couldn’t give me normal asthma medication. There was a good reason for it, but I can’t remember what it was. Steroids or something.

Both the doctors and the nurses had an unnerving obsession with my urine output. Let’s just leave it at that.

My skin started burning early on. I was the fat guy from New Jersey who beaches himself once a year under the unpitying suns of the Florida beaches.  I am still suffering the consequences of that side effect. My skin is shredding from me like grated cheese. I have wounds on my face and joints. I look like a homeless guy who asked some evil son-of-a-bitch for a quarter and got the crap kicked out of him for the trouble. There is one particularly disturbing lesion on my sternum, oval and staccatoed, which looks like a bite mark, smallish and suspiciously about this size of my wife’s mouth. She denies everything. She says if she wanted me dead I’d be dead. Which is undeniable. She has skills.

One of the worse side effects was the inability to sleep. By Thursday, I was hallucinating. Maybe. I’m still not sure what counts as a hallucination, but I found myself at times watching a little tribe of baby snow monkeys wrestle in a white pillow case near the door of my hospital room. I was aware that what I was seeing couldn’t possibly be real and if I did one of those cartoon doubletakes the monkeys would dissolve into pillow fluff again. But they would come back moments later. Soon after the quilt to the right, green and blue and patched together in various tropical hues by the lovely folks from my wife’s hometown, would melt into a kind of rainforest background from which a young white-faced woman with Japanese hair and goth makeup would observe me with unblinking eyes.  This, too, I knew could not be real. Everybody knows goth chicks don’t hang ou in the Tropics. Dena and I asked our doctor about it, who in turn sniffed the asthma inhaler and suggested we monitor things further before making any decisions.

By Friday I was done. I won’t lie; I was disappointed and frustrated. I had made it through 11 of the potential 14 doses and didn’t want to give up so close to the finish line. My body was already a wreck, what’s one more day? The medical team, however, was concerned with different side effects than those I worried about. The fevers and shakes, the sizzling skin and nausea, were par for the course. They were more focused on my heart rate, blood pressure and the functioning of my internal organs. Which, evidently, were deteriorating rapidly. My kidney in particular was alarming them, as my creatinine levels spiked and it was in danger of being overwhelmed and shutting down completely. As I have only one kidney left, we could have had a serious incident that might included sterner side effects, like death. Also my heart rate had nearly reached a point of no return and my liver function was declining. (Which seems like a sick karmic kick in the ass since I’m not even drinking any more.)

The doctors and nurses were all kind and supportive in relaying the decision to call it quits. They pointed out that 14 doses was not the goal, simply the maximum that they would administer to anybody, ever; it remains unclear how many doses are required to achieve a positive effect. All of my nurses told me that they had never seen anybody take 14 doses in one sitting (though there are plenty of people who have, I am sure). They emphasized that I had received more than enough doses, more than most people, and that they wanted to quit at this point for two reasons: (1) to avoid killing me, which seemed reasonable; and (2) to make sure that my body could fully recover so that we could undergo this whole process again in two weeks.

And, yes, I will need the time. I had illusions of walking back into the office Monday briefcase in hand and a smile on my face, the conquering hero. Truth be told, if I were to walk into the office Monday, my colleagues would leap through the windows, horrified and afraid. I’m still a mess. I’m still sick. I’m still scaling and scarred. I’m still wobbly and unable to walk straight for long periods of time. Despite my self-indulgence in writing these ramblings journal entries, I still can’t see perfectly, my eyes each going their separate ways and creating a trippy little view of the world. My headaches are severe, my intestines a mess, and my elbows are developing a scathing soreness for no good reason. I put on about 15 pounds of water weight, bloating my body like a corpse found adrift in the river.

Each day is getting better, though. I had my first good night’s sleep last night, more or less. I was hungry waking up this morning, after days of not wanting to eat at all. I have Dena. I have Kate and Josie. I came home to many and diverse Valentine gifts from Kate. Josie was liberal and happy with her hugs, regardless of what I looked like. I’m looking forward to some hot eggs for breakfast, followed by a pharmacological buffet for dessert.

Things could be worse.

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