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To Poison Myself on Wednesday—Or Not to Poison Myself on Wednesday

Posted Mar 26 2010 7:53pm

After I posted my last blog entry about deciding to quit getting chemo to treat my sarcoidosis, I’ve been questioned by friends, family, and Chronic Town readers. “Are you going to get chemo next week?” was the one consistent response that I got from the piece.

It’s a good question. When I wrote “ Even I Have Limits ,” I made specific my hitherto generalized unhappiness about my semi- monthly doses of Cytoxan. I knew clearly and without any doubt that I couldn’t keep going with this drug routine.

What I hadn’t worked out were the details of my declaration. I wasn’t expecting everyone to assume I was done with chemo as of March 23, 2010. I knew I had written forcefully about needing to stop, but didn’t think I was that unequivocal.

Once everyone started asking me if I were done, I began to wonder if I really could be done. And I realized that, yes, I could make it so. It was possible for me to call the oncologist’s office and tell the kind receptionist—who has passed along my frantic questions to the nurses and the doctor for nearly two years—that…what? I was taking a break? I was sick and couldn’t make my appointment? I had moved to Cairo and wouldn’t be available?

My confusion and uncertainty about how to concretize my plan to stop getting chemo brought me to another profound realization. I need to fix the snarl that my medical care has devolved into, so that I can end chemo as part of a comprehensive treatment plan. I am long overdue for a face-to-face appointment with the sarcoidosis specialist who has overseen my care—the one who started me on Cytoxan when I first got neurosarcoidosis. He is preeminent in the field. He cares for over a thousand sarcoidosis patients, teaches medicine, and spearheads and oversees a great deal of research into finding new drugs to fight the disease. However, it is almost impossible to get in touch with him when I have a crisis—like my recent neurosarcoidosis flare-up. Because he is so busy with other patients and with clinical trials, he doesn’t respond to panicked e-mails from a Montana patient or her local doctor about what to do when she’s having blind spells—or gastrointestinal shut-downs, or problems with one of the drugs he’s prescribed.

I desperately want to be done with the exhaustion and vomiting of chemo. But I also want to be smart about it. I don’t know whether it’s even medically “sound” to pull the plug on a heavy-hitting drug like Cytoxan. With some of my less powerful medications, like prednisone, it’s life-threatening to quit them cold turkey. I’d like to have someone looking after me when I do start tapering off the Cytoxan—or stopping it outright, if that’s what is called for. But I don’t have that “someone” right now. I can’t reach my sarcoidosis specialist, and my local doctors don’t deal with changing my treatment plan or determining a new one. Since I have a complicated case of a disease that is little understood, my Montana doctors prefer to defer to the experts.

I’m now tackling the issue of who that expert will be. I have an appointment next month to see my current specialist. In addition to demanding an end to Cytoxan, I also want to use my time with him to explain how untenable our current communication system has become. Maybe he’ll promise to answer emergency e-mails from my doctor—and while he’s at it, foreswear the four-word cryptic notes that are his standard. But I’ve also decided that I want to get the assessment of another sarcoidosis expert. Maybe I’ll just get another opinion on what drugs I should or shouldn’t be taking; maybe I’ll transfer my care if I like this person’s ideas and communication style and system. I’ve narrowed my search to two physicians. I’m going to cast off my remaining inertia and e-mail them both this weekend. Based on if and how they respond, I’ll make some choices about when I’ll see them.

Sometimes following the safest and most sensible path feels wimpy. It’s tempting to cancel Wednesday’s chemo appointment—and never look back. But I’ve invested two years in Cytoxan. I don’t want to risk somehow losing whatever benefits it might have given me by lurching to a sudden stop. I’d like to never schedule another doctor’s appointment—with my local ones, the current sarcoidosis expert, or any potential future experts. While it would be thrilling to set myself free, it could turn ugly if the disease popped up again and I had no one to help me fight it. I might take these risks if I didn’t have a family that needs me alive and as well as I can be. But I do. And I’m (generally) glad of it.

I have a maximum of three more chemo doses until I see my current sarcoidosis specialist. I’ll make a plan with him—or the person I choose to replace him—to either stop the chemo then or taper off it, if that’s necessary. I hate being grown-up and rational about this. But I am grown-up and (usually) somewhat rational. So, I’ll hold out and quit chemo the smart way.


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