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You Have Got To Be Kidding Me

Posted Mar 15 2010 5:22pm

Typing hurts today. This is because I had an unexpected procedure this morning. I now have a rather deep—but nicely stitched up—hole in my left forearm. The surgeon who removed the hard nodule diagnosed it as subcutaneous sarcoidosis—an uncommon form of the disease. I won’t know for sure if the nodule is sarcoidosis until the pathologist examines the tissue under the microscope.

As far as sarcoidosis manifestations go, the lumps I discovered in both my arms aren’t worthy of fretting. The memory of my most recent hospitalization for neurosarcoidosis is still fresh. The weeks of unbearable head pain, vertigo, and blind spells were terrifying and confusing. I’m doing better, but I’m still working around—not through—this triad of neurological symptoms. I’m also still dealing with the after-effects of sarcoidosis in my bones. I broke two bones that were weakened by sarcoidosis lesions that are large enough to see in X-rays. I’m still stomping about in the bulky orthopedic “boot” to help the fractures heal. The sarcoidosis in my liver is showing its teeth these days, as well. My liver enzymes are out of whack, and I’ve been ignoring as best I can the dull, steady ache that comes from that side of my body. It’s been a while—thankfully—since I’ve been confronted with symptoms of cardiac sarcoidosis. (I am frantically knocking on the wooden side of my chair, so that I don’t jinx myself by this writing positive news). But lately I haven’t had to deal with frightening arrhythmias or worry about whether or not to agree to an implanted defibrillator (AICD). I could go on and fill you in on the exact details of the sarcoidosis in my pituitary gland, lungs, lymph nodes, joints, and spleen. But people in Chronic Town have to read enough of their own medical jargon.

My purpose in recounting the blow-by-blow (or, more precisely, the organ by organ) history of my sarcoidosis is to establish my bona fides with this disease. I truly do have a sense of how life-altering and life-threatening it can be. Given my history with this illness, I feel somewhat silly for being angry and disheartened at today’s discovery. I know I should feel lucky that these sarcoidosis nodules are subcutaneous and not spreading on the surface of my skin. I’m also aware that it’s good news that the subcutaneous sarcoidosis won’t require me to add another drug to the long list of medication I already take.

Even though I can don my rose-colored glasses long enough to acknowledge these facts, I’m still mad at today’s discovery and events. Although the excision wasn’t that invasive or painful, I certainly wasn’t expecting it. This morning I went to my dermatologist for a routine “skin check” for melanoma. She palpated and pondered my lumps, and decided they are too big and have grown too deep for her to remove. So she sent me over to the plastic surgeon. He spent some more time palpating and pondering before cutting out the largest of them. Thirty minutes later, I was wrapped and ready to go. Not a big deal, really, but discombobulating.

I’m pretty tough, though. I can take having hardly any advance notice before someone starts snipping and digging around in my forearm. I might be tired from six years of tracking and then battling sarcoidosis’ trail of slime (that would be my authorial reimagining of granulomae) throughout my body. No, the main reason for my anger is the fact that somehow sarcoidosis—or at least my version of it—does not submit to the lethal cocktail of pills and infusion I take to combat it. This is a devious disease. When I bashed it out of my heart by taking a high dose of prednisone, it moved to my joints and liver; when my doctors added Remicade to the steroids to “finish off” what they thought were the disease’s last gasps, it retrenched and then scuttled off to my brain; the doctors’ pulled out all the stops once my nervous system was involved and added Thalidomide and Cytoxan to the Remicade and prednisone; I enjoyed enough respite to drop the Thalidomide; this gave the sarcoidosis the chance to infiltrate my bones; when the neurological symptoms from the disease became less severe, I thought I was on my way to being cured and was able to cut back the Cytoxan; this slight disarmament made it possible for the sarcoidosis to re-attack my nervous system and become even more venomous; in response, I returned to taking Thalidomide and added Rituxin to this brew of immune-suppressants.

I’m not always so vitriolic when I write about sarcoidosis. It’s conventional to turn to warfare to describe a disease and how it is treated. I know I sometimes slip into this parlance unintentionally. In fact, it’s hard not to use terms of war when describing illness—I fight the disease; I win or lose my battle against it; and so on. But I’m typically able to recognize that sarcoidosis is in my body and of my body. It is the result of my own body’s immune system run amok. However, today I’m using battle words deliberately because today I feel more hostile towards sarcoidosis than usual. Maybe this rage actually is a good sign. Instead of feeling beaten down, and hopeless—as I did when I was just in the hospital—I’m actually feeling well enough now to be furious rather than depressed. Whether it is a healthy emotional response or not and whether it points to my overall better health—I am furious. How can this disease keep finding a new way to manifest itself and make me sick in the process? How can it survive the medicines designed to destroy it? The Cytoxan makes the rest of me weak and tired, so how is it that the sarcoidosis has enough pep to re-emerge under my skin?

My arm is throbbing in time with my head. I feel like smashing something. The irony of this disease—of all disease—is that I cannot pummel the thing that is trying to destroy me because it lives in and feeds off me. It is in me and of me.


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