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Posted by on May 20, 2010 in IL-2, Immunotherapies (IL-2, IL-15, PD-1s, etc.), My Health Updates - No comments


For the first time in my life I have a bit of a belly, though it is fast receding. I wish I could say that it was hard-won, built upon years of Miller High Life, Monday Night Football and an utter disregard for cholesterol. Huge, Olympian, grotesque. But not really. It is instead a product of an excess of fluid drained from IV lines into my veins and leaking into various parts of my body.

This condition is known as capillary leakage. Which sounds harmless enough, like a dripping faucet, but turns out to be one of the potentially dangerous side effects of IL-2, the treatment I am undergoing. Such leakage from the blood into the interstitial fluid – the juices that marinate your cells – can result in dangerously low blood pressure and organ failure. Low blood pressure and a concern for organ failure have been the primary reasons doctors have stopped my treatments in the previous rounds.

Capillary leakage also results in something called edema, an excess accumulation of fluid beneath the skin. I’ve written about it before when I’ve given descriptions of the side effect I like to call Hobbit’s Feet Syndrome. (The scientific establishment has yet to follow suit regarding my medical vocabulary.) Hobbit’s Feet Syndrom is a gross swelling of the feet – worse even than that experienced by pregnant women, my wife has grudgingly acknowledged. My daughter Kate, in what was meant to be a whispered aside to Dena but was spoken with the loud abandon of all five-year-olds, asked why the doctors keep screwing up my feet.

Edema is not restricted to the feet; some people have been known to gain as much as thirty pounds during treatment. Physicians, however, will cut off the supply of fluids during IL-2 if you gain more than five percent of your body weight. I gained about 15 pounds this past go-round, which, being the skinny bastard that I am, pushed the envelope.

Edema, at least that which results from IL-2, is a temporary side effect, though. Patients are given certain drugs to relieve the swelling. At first it seems hopeless, the pills doing nothing and you find yourself unable to wear shoes or climb stairs. You are left only with a constant urge to urinate. Then, like a helium balloon released fluttering into the air, you find yourself shrinking overnight. My hands regained their delicate bony structure first, followed by the shape returning to my feet, anklebones sharp enough to cut beef. The swelling of the belly, which I had not experienced before, took the longest to correct, but the last of the excess fluid is nearly gone now.

The last of the fluids seem concentrated in my joints, particularly in areas that have been previously injured – my left knee which underwent arthroscopic surgery when I was in college; my left wrist, which I broke a year or two ago; and my left shoulder, which suffered a rotary cuff injury that was never attended to and therefore developed into something called “frozen shoulder,” which sounds coldly painful or deliciously ice-creamy.

One last area of potentially lingering fluid is in my lungs. I have noticed a gurgling sound when I breathe inward. It is particularly noticeable at night, when rest of the house is quiet – a disturbingly rare occurrence in the Battle household. Such quiet puts you in a better position to hear such faint sounds; it is also a time when the mind is at its most paranoiac. When I called my oncologist at Duke to inquire, his nurse urged me to go in to the emergency room and have it checked out. “Let them know that potential renal failure is at issue, and they will move you near the top of the list.” Okay.

And so off we went, to yet another hospital. This one right here in good old Alexandria, where I had my kidney removed in the first place. The wait was short. That whole renal failure thing evidently works. I also bumped into my neighbor Kim, an ER nurse at the hospital, who took good care of me. When she brought in the doctor, he began asking a few questions before Dena jumped him and informed him that I had been undergoing a rare cancer treatment and he should be aware of this before proceeding. He looked at her with unimpressed eyes, asked a few more questions, then left. When he came back he said my lungs were dry and that nothing appeared to be wrong.

Which left me feeling like a hypochondriac. In the stall next to mine, only a few minutes before, I heard a nurse gently chiding one of the elderly women with powerful lungs about making herself throw up. “Did you stick your hand down your throat again, Miss Johnson?”

I should probably note here that a good friend of mine, David Olive, gave me a book as a present titled The Complete Manual of Things That Might Kill You: A Guide to Self-Diagnosis for Hypochondriacs. I don’t think it was a healthy addition to my library. (Still, did you know that if your toes are discolored it is a probable sign of gangrene or that if you walk with a limp that you may have Paget’s Disease?)

And so I walked my gimp walk (Paget’s Disease? Anyone?) into the dusk, embarrassed and bewildered at the same time. The gurgling is real. I still hear it. And even though I am told everything checks out — at 3 a.m., when you can’t sleep and the mind is at its most darkly suggestive state, listening to your own gurgling can be an unnerving experience. I think I shall invent yet another new term for the medical establishment: IL-2 Brain.

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