Inching Forward

September 21, 2010 at 6:30 pm (Uncategorized)

Pardon my absence from this niche in cyberspace. As my steadfast readers know, whenever I have vanished from my blog in the past, it was usually because I was too sick to be able to write. I am happy—and grateful—to report that this time that wasn’t the case. I haven’t been miraculously, suddenly, or wholly cured of my chronic and systemic sarcoidosis. But I have been able to inch my way toward a more “normal” life. I’ve been able to play a more active role in my six-year old son Andrew’s life. I’ve been able to go out to eat with my husband, Jay. I’ve been able to cook dinner and do the dishes. It has been so fun—and also fairly exotic—to engage in the work of everyday life that I haven’t wanted to turn away from it.

The seeds of this healthier time grew from dark and seemingly toxic soil. I’ve been fighting sarcoidosis for six years. No matter how dutifully I followed the many doctors’ orders, I spent most of that time losing to my opponent—my own immune system gone haywire. Whatever immune suppressant the White Coats fired into me—ranging from prednisone to chemotherapy—seemed to do little more than annoy the disease that had coiled its tentacles throughout me. I endured two long and terrible years of biweekly chemotherapy to shake loose the disease’s grip from my brain and nervous system. After getting ten times the chemotherapy of the average cancer patient, I still managed several times to wind up in the hospital with unendurable pain, severe vertigo, and episodes of total blindness all brought about neurosarcoidosis.

However, maybe there is something to old AA adage that you have to hit bottom to start recovering. Those bleak February days, when my vision skipped on and off as though a demented toddler had taken command of the remote that controlled my sight and was pressing the power switch with sticky-fingered abandon certainly knocked me on my ass. I knew with a certainty and wisdom that emanated from every bone, muscle, and fiber of my being that I could not and would not continue to blast myself with the chemo. I limped my way to Ohio and told all this to the sarcoidosis expert who has managed my treatment from afar. He agreed that we should stop the chemo. But he encouraged me not to throw in the towel and give up on our search to find some medication that would stop—or, at least slow—the disease’s rampage through my body. I became one of the first sarcoidosis patients to try Rituxan—an infusion drug invented to treat lymphoma, but which has also proved effective against rheumatoid arthritis (another auto-immune disease that might be related to sarcoidosis.) My sarcoidosis expert was blunt as usual about how little he and other researchers actually understand about sarcoidosis. “We know B cells are involved in your body forming granulomas,” he said. “And we know that Rituxan suppresses B cells, and that in some sarcoidosis patients this makes some difference.” I was sick enough that the thought of even some difference, no matter how piddly, seemed worth the risk of taking yet another cancer drug.

Although I wanted to get better, I had lost all hope that any pill or potion would work. For my first few years in Chronic Town, I eagerly sought a cure. I researched, attended conferences, consulted with innumerable White Coated experts from the medical establishment, as well as with naturopaths and proponents of the Marshall Protocol who have an alternate theory on the cause and treatment of sarcoidosis. I prayed and accepted the prayers offered from friends and family. I wrote and read aloud affirmations about my body healing and recovering. I tried to stop the flow of anxious and negative thoughts that coursed through my brain. I swallowed the handfuls of pills the White Coats said would fight the disease. I consented to having a “port” surgically implanted in my chest so that I could get regular infusions of other drugs. I also swallowed handfuls of supplements the naturopath said would help fight the disease. I put myself on an anti-inflammatory diet to curb the disease process at the same time I cut calories to try to lose the eighty pounds I’d gained because of my medications’ side-effects, my lack of energy and exercise, and the months I spent almost entirely in bed. Mostly, though, I waited—to get well, to be cured, to wave sayonara to sickness and get back to living.

Yet all my research, clean eating, positive thinking, and pill taking didn’t seem to make an iota of difference to the sarcoidosis. I didn’t get cured. I got worse. And then worse, and then a little more worse, and then a lot more worse. So you should believe me when I say that I had absolutely no hope or expectation that the Rituxan would do anything that the prednisone, methotrexate, Enbrel, Remicade, Cytoxan, ginger and turmeric supplements, acupuncture, visualizations, and affirmations couldn’t do.

But it has. Or something has. Maybe it’s the combination of the new drug with the others. Maybe the sarcoidosis is burning itself down. Maybe the planets have finally aligned themselves properly. Whatever the reason, I am grateful. I don’t fully believe that any of the positive changes I’ve experienced will last. I am superstitious enough to almost believe that writing about feeling better will somehow jinx me and cause some sort of reversal.

My improvements aren’t at all like the total cure I once awaited (and, truth be told, still hope for). I am better in increments almost too small for others to notice. The pain in my head that has been a nearly constant reminder that I am sharing my nerves with sarcoidosis has eased—just a little, but it is enough for me to have cut back on the pain medicine I’ve relied on for four years by half. The vertigo that kept me bedbound for months has similarly retreated. I’m still not steady enough to drive—or, even on some days, to walk—but I feel less controlled by the violent twirling and surging. I’m still suffering from periodic blindness, but the episodes come less frequently. And when the pain and vertigo back off, I’m able to get up and function. I can unpack a few boxes in our new house, take short walks with Andrew after school, shop for groceries, and cook. Each activity in turn builds stamina and increases my strength in a delightful virtuous cycle. I have to be very careful, though, not to push myself beyond my very limited capacity. When I do, the sarcoidosis kicks up a fuss. Not only do my neurological symptoms worsen, but a nasty sarcoidosis rash flares up on my skin, my liver enzymes get out of whack, my joints swell, and I’m right back in bed.

I have no complaints, though. I’ll take these baby steps back toward health. Even at my creeping pace, I can still live so much more fully than I would have dared to dream a few months ago. Chronic Town has taught me many things—far more life lessons than I would have liked. Perhaps the most important one is this: live the life I have—not the life my peers are living, or the life I wish I could live, or even the life I think I should have. I now have the capacity to spend meaningful time with my young child and my husband of 13 years. I can be with them every day and in many ways now, instead of saving up my strength and pushing myself up and out of bed for a single extravagant gesture. This change is monumental and amazing. To be able to spend time with the people I love most is an extravagance of luck. I can sit with Andrew while he does his homework, watch Glee with Jay, wake up and do it all again. Would I appreciate being able to bake cookies with Andrew or talk about football with Jay if I hadn’t lost to disease the everyday family rhythms? I don’t know. I’d like to think that I would have relished the abundance of love in my life without first getting nearly killed by a disease. But, truthfully, before I got tossed into Chronic Town, I was awfully preoccupied with much more than the life I had waiting for me to live. I spent far too much effort on what I could, should, or might have. I also worry that I’ll lose my appreciation for the small wonders of everyday life when I’ve gotten accustomed to them once again. Will it take very long for the task of cooking dinner to start feeling like a lousy burden instead of a gift of great value? I hope not. Perhaps the looming specter of sarcoidosis returning with its full force will keep in touch with the magic and beauty of the here and now.


  1. Roz Heafitz said,

    Thank you for sharing. I am grateful for what is occuring and will rejoice even more fully in the Sukkah.

  2. SharonMV said,

    What you describe so elegantly with such simple & joyful appreciation – that, that is what I am hoping for, fighting for, that is what I want. I hope you continue to enjoy the simple, but so important cycle of daily life and more improvements.

    Rituaxin is sometimes used for Lupus as well. The Be cells are thought to be the culprit in CVID and other primary immune deficiencies. They are the cells that produce the immunoglobulins which make antibodies to infections (and in some cases to ourselves). And thus B cells also to play a role in why people with CVID are more prone to develop autoimmune diseases. Of course nobody seems to know for sure how it all works!


  3. Paul said,

    Hi rebecca

    great to hear you’re feeling a little better,

    Take it easy, smell the roses and hang in there


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