April 22, 2009 at 1:43 am (Uncategorized)

I’m still in Rochester, Minnesota, in a hotel across the street from at the Mayo Clinic. Tomorrow afternoon my husband Jay and I get to go home after nine days of me being poked, prodded, scanned, scoped, and questioned. It’s been worth it, though. For once, after making a pilgrimage to a major medical site, I am leaving with news. Now before you–or I, for that matter–think that I have definitive information on all fronts, don’t get your hopes up. We are, after all, still dealing with sarcoidosis, which can be maddeningly mysterious in its presentation.

Still, I am thrilled–and, dare I say, hopeful?–with what I’ve learned. I’ll start with my heart, one of the two critical organs involved in my latest sarcoidosis adventures. As some of you might remember, my local physicians in Helena were growing concerned that, after a three-year hiatus, the disease might have become active again in my heart. This was a terrifying prospect given the battery of drugs that I’ve been on trying to beat back the disease and the fact that it doesn’t seem like there’s a whole lot more out there to throw at this thing. Indeed, I’ve been worried about keeling over from a heart attack, or having some weird sort of heart failure kill me more slowly, all while the doctors remain powerless to do anything to help me. So the Mayo doctors ran a cardiac MRI and an echocardiogram to see if there’d been a recurrence of the conduction issues that had been my original cardiac problem in 2004 or if the right side of my heart had started to enlarge again after stabilizing for a few years. Turns out I can stop with the nail biting. The Mayo cardiologists found both my latest cardiac MRI and echo unchanged from 2006, when I had learned that the cardiac sarcoidosis was inactive. I am now exhaling.

I breathed another enormous sigh of relief after getting back the results from the MRI of my brain, with its special focus on my pituitary gland. For those of you new to my blog, I’ve been suffering (and I use that word deliberately) from neurosarcoidosis since the fall of 2007. After months of vertigo, debilitating headaches, and weird neurological episodes where I don’t speak entirely like myself and lose feeling on the left side of my face, I began to work with a sarcoidosis specialist in Cincinnati who started me on Cytoxan, a chemotherapy drug, to treat the disease in my head. I’ve been getting Cytoxan intravenously for several months, and the side effects are what you’d expect from chemo—nausea, vomiting, and chronic fatigue—though I’ve been lucky to keep my hair. While I haven’t felt cured or well since starting the chemo, I have had fewer headaches and much less vertigo. The Mayo brain scans confirmed my sense of improvement: the swelling in the area surrounding my pituitary is better. It’s nice to know that we can document the efficacy of my semi-monthly doses of poison. I was also relieved to learn that the pulmonary function tests done here show that my lungs remain virtually untouched by sarcoidosis. I’ve always found it a bit ironic that I’ve never actually had pulmonary problems from what is generally considered a lung disease—but I’m not complaining.

The results from the various cultures, biopsies, and scans performed on my digestive track were also encouraging. No evidence of celiac disease, Krohn’s disease, Whipple’s disease, or any sort of bizarre or random fungus, parasite or infection. Though here’s where things get a little fuzzy. Because I’ve been on prednisone for so long (and at high doses so recently), the biopsies aren’t entirely reliable, since the steroids can skew the biopsies. There’s also the question of whether this still might be GI sarcoidosis, since negative biopsy results can simply mean that you didn’t happen to snag a microscopic spot of granuloma from amid all the feet of intestine in which it could hide. Still, since the disease appears to be slammed into submission elsewhere in my body, the gastroenterologist thought it was much more likely that all the varied and strong drugs I’ve made my stomach and intestines endure over the past five years have caused a bad-ass case of irritable bowel disease. But, the gastroenterologist countered himself, that conclusion still doesn’t explain why the massive doses of corticosteroids I received during my last hospitalization has been the only attempted remedy that actually helped my stomach problem. However, I feel fortunate that none of the stomach testing showed anything nasty, like the cancer I had convinced myself I had. In any event, if it’s sarcoidosis in my intestines, there’s not much else I can take. Assuming it’s IBD (which is now the working theory), I’ll need to begin thoroughly tracking what I eat and finding any possible triggers for the pain and debilitating episodes of diarrhea.

Even if Mayo hadn’t given me good news (with a dash of nebulousness thrown in, just to make sure I remember what disease I’m dealing with), I’d still like the place. I’ve visited several medical centers in an effort to find the best possible treatment for my sarcoidosis. I don’t mind flying for good care. Hell, I’d fly to another country to seek advice if I thought that would help. (Actually, I’d love an excuse to fly to another country, but that’s a whole different issue.) While I’ve encountered brilliant individual doctors at different facilities (and I even followed one when she left National Jewish Hospital in Denver—one of the forerunners in sarcoidosis treatment and research—to another big medical center on the East Coast), I have yet to meet a team of physicians of the caliber I’ve encountered here. Even more impressive than their education and expertise in their respective fields is the fact that this team communicates among itself. Unlike many other doctors I’ve met (and boy, have I dealt with a platoon’s worth of white coats in the past five years), the Mayo “ethic” seems to stress communication and cooperation with each other (and, God forbid, the patient—unless you are that first cardiologist I saw here) rather than solo-ing it. In terms of medical models, Mayo conjures up images of a well-run mid-Western town, with every individual (from the lowly phlebotomist to the neurosurgeon) having their role. It’s a refreshing change from the totalitarian fiefdoms I’ve encountered in the past.

Jay and I can’t wait to get home and hug our five-year old boy, Andrew, who might evince a flicker of interest in our arrival. He has, after all, been spending the past ten days on his grandparents’ ranch, where he is spoiled in the best sense of that word (though I do think sometimes, “I never got to put canned whipped cream on my pancakes along with maple syrup when I was in their charge”). I can’t wait to share the good medical news I’ve received with Andrew, with our extended families, and with our friends. I’m a little scared about my stomach. But I’ll rest a little easier knowing the pain I’m experiencing isn’t coming from something ghastly. And the Mayo GI doctor was quite clear that if I worsen, if I can’t get control of this cycle of pain and diarrhea, I can—and should—come back and see him and get re-tested and re-evaluated. The best news, though, is that is appears that the sarcoidosis is in retreat. The last eight months of hellish chemo, combined with monthly infusions of Remicade, daily doses of prednisone, and, until last month, daily doses of Thalidomide have paid off. Every single marker for the disease points to it being inactive, being kicked in its granulomatous teeth by the medications and by my own body, which is actually fighting this disease. I am excited that the various specialists here, including the oncologist I saw today to get my biweekly dose of chemo, recommend that I eliminate one of the three big immune suppressants I am still on. I hope that Remicade can follow the Thalidomide.

I’m not planning on ending my relationship with my sarcoidosis guru in Ohio. I feel like I owe him my life. When I first saw him, I couldn’t walk across the room without feeling I was aboard one of Andrew’ imaginary pirate ships on choppy seas. While the regimen he put together is extremely difficult, it is working. Now I’m almost always certain I’m on dry ground. Plus, I am writing this, and I won’t suffer from motion-sickness after five minutes of looking at the words; I haven’t had a brutal headache in the past few days; and once I get the chemo out of my system, I know I’ll have the mental energy and capacity to play with Andrew. No amount of cooperation and collaboration can make me break a bond with someone who has helped me feel alive again. However, receiving Mayo’s confirmation of this is nothing short of amazing, given the five years of hell I feel like I’ve endured.

I plan to return to Mayo in June or July. I’d like to work with their pain management program; I’d like to meet their neurosarcoidosis specialist (there aren’t too many of those in the world); and I’d like to establish a patient relationship with their pulmonary department. If I have another gastrointestinal crisis, I will seriously consider flying here, rather than endure ever again the total chaos of our local hospital, where excellent local physicians can’t make contact with far-away specialists, and sometimes with each other. But that’s another story in itself. For today, I’m happy to know that, for once, all is as well as it can be with my body. That’s not saying I wouldn’t mind a little whipped cream on my pancakes.


  1. Dorothy said,

    Great news! The best part being your optimism which renews your body and mind to continue the fight against this thing! Treat yourself with whipped cream!

    • Rebecca Stanfel said,

      Thank you Dorothy! I appreciate your kind words about my optimism. After ten days at May, chemo, and the trip home, I’m feeling less like fighting this thing and more like sleeping more a thousand years. But having family and friends like you remind me of how damn lucky I am and how much I want to kick this stupid disease.

  2. Alan Newman said,

    Congratulations, your current diagnosis looks promising and that’s seems to be as good as it gets, for people like us, with Sarcoidosis. I, at this stage only have Pulmonary, and E.N. and the fatigue factor alone turns 7 days activity into what would have been an average day prior to my introduction to Sarc.
    I live in Sydney, Australia, where there is only one registered Sarc specialist in the country and after a short email conversation with him, I wouldn’t send the neighbour’s annoying dog, none-the-less,myself for consultation. I am new to your blog and would appreciate knowing the name of your Sarc guru in Ohio, just in case or one of my fellow Australian Sarc warriors (or should that be worriers) need further assistance , as in all likelihood, the odds are not in our favour.
    May I also congratulate you on your well developed, descriptive and highly readable, writing style. Your good humour and real perspective, highlight, how the mind can overcome great obstacles, be they physical, chemical or anything else when we focus on what’s important and putting to one side what’s not.
    Wishing you and your family continued success from fellow Sarkies “down under”

    • Rebecca Stanfel said,

      Hi Alan,

      Thanks for the note. I appreciate you writing, as well as your kind words about the blog.

      I relate to the fatigue factor. In fact, I’m pecking away at a new entry about the kind of fatigue we “sarkies” get. I’m not sure the rest of the world–those healthy folks outside of chronic town–can understand what we mean we say we’re tired. Language can’t do justice to how utterly exhausted I can get. (So give me a few days on the essay.)

      I’ve also met my fair share of idiot doctors. Glad you recognized the one in Sydney as such and didn’t waste anymore time on him. Yes, I will send along the name of the Cinci. doc. along with some other recommendations for doctors in the U.S. that have good reputations. I was fortunate to have been able to attend the WASOG conference (World Association of Sarcoidosis and other Granulomatous Diseases) when it convened in Denver a couple of years ago. I met, spoke with, and got the addresses and e-mails of a bunch of sarcoidosis specialists. Now, this will seem ridiculously paranoid, but you might notice in my blog that I never mention a doctor by name, especially if I say something nasty or think I might want to say something nasty–or even nuanced–later. I do this for a couple of reasons: 1.) I’m married to a lawyer, and, given my countrymen’s (and women’s) predilection for threatening lawsuits, I can’t help but fear some nitwit either shutting me down or suing me or even writing me horrid notes; 2.) More importantly, the sarcoidosis community already feels terribly divided between those who follow the Marshall Protocol and those who don’t. I don’t want to add to the internecine rift by bashing on a doctor or a treatment plan that some reader loves, or advocating a doctor or treatment plan that someone loathes.

      So, I’ll send you names and contact information in the next couple of days to your e-mail if that is OK. You should feel free to pass along the information and my experiences to anyone you like.

      Again, I really appreciate your comments. I look forward to exchanging information and news. Hang in there. Let me know if I can be of help in any other way. I’m working on getting links up on my blog to various sarcoidosis associations, support groups, online chat forums, etc.


  3. Sandra Ahten said,

    Wow. What a relief to read your post and really take in the breadth of the good news.

    Also to read the comments from others who suffer, so as to truly understand why you continue to honor the commitment to keep writing.

    I have before, contained an urge to suggest that you stop writing this blog so that you can spend more of your resources taking care of yourself. But obviously this is your way of giving back and being there for others in a way that only you, someone who is going through the experience and is a gifted writer, can.

    Thank you for being so generous.

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