Message in a Bottle

March 28, 2009 at 9:28 pm (Uncategorized)

“Maybe it takes a crisis to get to know yourself. Maybe you need to get whacked hard by life before you understand what you want out of it.”

from Handle with Care by Jodi Picoult

After eight days, I am finally home from my latest hospitalization—the sixth of the year, if I’m counting correctly.

Almost every day I was in the hospital, I pecked away on an old laptop I insisted my husband Jay bring to me. I felt weirdly compelled to write something for my blog, even when I was in a lot of pain, or even when my brain was muddled by medications and by new data about my body and my disease. At first I told myself that my longing to write about my latest “health problems” was simply because I was being responsible. After I had just launched my new Web site (www.Rebecca-Stanfel.com) and a new blog address (chronicville.wordpress.com) with much fanfare, so it seemed I had a duty to keep my readers apprized of my ongoing medical situation. Wouldn’t it be odd to vanish just when I had stridently announced my reappearance?

Slowly, as I’ve pecked away at sentences about my latest crisis, I realized that my need to write isn’t about reassuring my readers that I’m still alive. I’m not being altruistic, keeping all of you informed. No, I want to know that I am indeed alive, so I’m sending out a message in a bottle, a primal scream that says, “I am still here.” Maybe someone else living in Chronic Town will pull this “update” from the waves and hidden currents of cyberspace and understand what the hell is happening to me. I haven’t dissolved under the pressure of sarcoidosis. I am still alive. But suddenly, I’ve been tossed onto what feels like a desert island of incomprehension. I, for one, can no longer make sense of my life, my disease, or my treatments anymore. Maybe someone else can.

What sent me to see the doctor last Monday, and what propelled him to hospitalize me, were the same issues that have plagued me since the first of the year. (I apologize in advance for being overly-explicit about bodily functions. Maybe the pain killers have lowered my inhibitions, but I can’t see another way to work through this narrative without talking about my own waste.) I continue to have gastro-intestinal problems: diarrhea that comes on so quickly and so severely that no matter how much water and Gatorade I chug, I cannot keep myself hydrated; stomach pain that leaves me wanting either to writhe in bed or to remain so utterly still, breathing shallowly and disturbing a minimal number of muscles; then, after the diarrhea pays a call, I swing to the other extreme and become so constipated that my belly looks like it did when I was pregnant with Andrew.

Although I’d had the full complement of my GI symptoms, it was pain that brought me to the doctor’s office. Before I saw him, I had spent a night without even a minute of sleep; it felt like I was being gutted. And this was while I was taking the maximum doses of both kinds of narcotic pain medication I have. Even though I had enough of these drugs in my bloodstream to anesthetize a horse, I felt like I was having abdominal surgery with nothing more than a couple of aspirin to numb me.

The doctor said I had to go into the hospital. My arguments to stay home were, truthfully, pro forma at best. I was scared—because pain of such magnitude indicates a problem of equal magnitude. What was happening to me? I was also frightened because my gut pain had mysteriously reminded my brain of its neurosarcoidosis complaints. So, not only was I staggering around holding my stomach, I simultaneously had two days of neurosarcoidosis symptoms: the searing pain I call “stroke headaches,” vertigo intense enough that I tumbled down a flight of stairs, and an inability to “find” words in conversation. Although I would have liked to write off my dizziness and stuttering as a side effect of the narcotic pain killers I swallowed in an attempt to ease my belly pain, I couldn’t. The “night of the long knives,” as I’d come to think of my sleepless vigil of stomach pain, was the end point—not the beginning—of this new set of symptoms.

I usually hate getting admitted to the hospital. I try to be stoic. I fight against the complete loss of physical autonomy that hospitalization entails. “Let me stay home,” is my typical refrain. This time, though, I simply hurt too much. It also helped that my mother was with me. She had come a few days earlier to help Jay and I make it through a lousy weekend. I had just gotten my bi-weekly dose of chemo to treat my neurosarcoidosis, so I was throwing up, exhausted, and effectively useless when it came to caring for Andrew, our five-year old son. After months of dodging our town’s infectious agents, Jay had finally caught what sounded like tuberculosis. It turned out to be bronchitis, but the doctor recommended we “quarantine” my husband from Andrew and me since I am so immune-compromised. Without my mother’s heroic ride to the rescue, Andrew would have spent three days eating pretzels and watching his Mommy dry-heave her morning medication while his dad lay sequestered in our basement, wearing a surgical mask and trying not to hack up both his lungs.

I could gauge in my mother’s eyes how awful I looked. While my own reflection in the mirror didn’t provide me much data, I could see in the dark rings encircling her eyes and the worry that made her eyes flicker almost electrically green instead of their usual sea green, that I was not well. I also knew that (despite what I’ve sometimes accused him of) my doctor doesn’t toss people into the hospital for no reason. So, in I went, and within half an hour, I was hooked up to a morphine pump and had begun eight days of testing. The only constant was the pain, which not even the morphine pump could eradicate. Of course, I also had my fear, but that waxed and waned, depending on the results of a test, and on how close to the surface I allowed my thoughts of dying and leaving Andrew and Jay.

Here’s what I learned (or, more accurately, didn’t learn) during hospitalization #6 of 2009: something is not right. For the last seven months, I have been carefully following a regimen of toxic medications theoretically to control my systemic sarcoidosis: chemotherapy (specifically, a nasty agent called Cytoxan); Remicade (an infusion medication that shuts off the inflammatory response of my immune system); prednisone (an all-purpose anti-inflammatory, immune-suppressing drug that I have taken in lesser and greater doses during the past four and a half years), and Thalidomide (another anti-inflammatory, immune-suppressant that was first used in the 1960s to treat morning sickness, ended up causing terrible birth defects, and has since found a niche in treating specific cancers, autoimmune diseases and leprosy). I saw a sarcoidosis expert only a few weeks ago and he had confirmed that my neurosarcoidosis was improving—improving so well, in fact, that he cut Thalidomide from daily repertoire of medical poisons and authorized me to start a prednisone taper once my bowels were “in order again.” He recommended six more months of chemotherapy every other week. I felt optimistic. I cold do the chemo. I swear I could smell permanent remission coming my way.

Apparently, my olfactory nerves need to be checked, along with the rest of my body. I wasn’t sniffing a cure in my near future—probably just the granulomatous cells of sarcoidosis plotting a comeback. A CT scan of my abdomen—and a subsequent echocardiogram—revealed a recurrence of my heart problems. My initial presentation of cardiac sarcoidosis was one of “conduction abnormalities” (in other words, the sarcoidosis was messing with the electrical function of my heart), as well as a thickening and loss of function in the right side of my heart. For the past three years, though, the sarcoidosis in my heart hasn’t been active. The right side of my heart stabilized; I no longer had bizarre results on EKG and cardiac MRI tests; I no longer had to listen to cardiologists speculate about whether or not to implant a defibrillator, or whether I might “drop dead” (my electrophysiologist had some bedside manner issues). While the disease had unfortunately moved on to new organs (bones and, most inconveniently, brain), at least my heart seemed fine. Now, this no longer seems true. The latest tests of my heart revealed a recurrence of my right heart problems, as well as pericardial effusion—an inflammation around the heart, which, according to the doctors, is present in nearly twenty percent of active cardiac sarcoidosis.

The many tests of my stomach and intestines came back normal, except for those that indicated the odd inability of my body to absorb certain fat-soluble vitamins. The doctors worked hard to rule out various gastro-intestinal ailments. While it’s very good to know that I don’t have colon cancer or a dysfunctional small intestine or Crohn’s disease, the results propelled all the doctors, including the sarcoidosis expert, to speculate that I now have active sarcoidosis of the GI system. Biopsy, which is the gold standard of sarcoid diagnosis, is a tough task when you think of the dozens of feet of intestines we all have. What are the odds of grabbing a microscopic chunk of granuloma from twelve feet of colon? Often, I learned, GI sarcoidosis is a “diagnosis of exclusion.” In keeping with this strategy, the doctors ruled out other problems and then bombed my system with 120 mg. of intravenous prednisone. If I felt better with the prednisone, the odds were that I had active sarcoidosis in my guts. I didn’t know whether to hope to feel better on the prednisone or not. It would be good to be out of pain, but what did it mean that the disease was present while I was taking so many drugs to eradicate it? It turned out that within a day of receiving the high dose of IV prednisone, I began to feel better—not well, but a slight easing in my guts.

What does this mean? Is it possible that the chemotherapy I have been suffering through is able to control the sarcoidosis in my brain and nerves, but is not able to keep the disease in check in my heart, GI system, or other organs? Can anyone answer this question, or does my weird form of this weird illness mean that I am living in a land far beyond the data they have available for the disease? Where do I go from here? What should I be doing for my heart? For my stomach? For my brain? Who can help me understand this? How will I stay alive if, while I was getting the equivalent of an atomic bomb for the disease (in terms of chemo and three other toxic, immune-suppressing agents), it was able to pop up in my heart—again.

Both the local doctors and the sarcoidosis expert recommended that I travel to the Mayo Clinic so that I can get thoroughly vetted by top-notch cardiologists, gastroenterologists, and whatever other -ologists I need. The sarcoidosis guru said not to come to his hospital because it is a teaching facility and rather than getting a brilliant specialist to care for me, I’d simply have the “resident of the day” attending to me. Jay and I agreed to go to Mayo. We have agreed to everything. What else can we do? We want me to stay alive, with this disease in a minimum number of vital organs. We want me to stop spending more time in the hospital than out of it.

Truthfully, Jay and I don’t talk much the latest news. I haven’t even felt compelled to type my latest right heart ejection fraction into google and horrify myself with the possible results. I’ve told Jay that I’m scared, that I feel hopeless, that I don’t know if anyone can help me. He has nodded in agreement and held me. Beyond that, there’s not much else to say. It is better to do puzzles with Andrew, plan tomorrow’s dinner, and talk about the book I recommended he read. I’m not in denial, per say. I just don’t know what else to do.

I do know that I am in the midst of another crisis. As the Jodi Picoult quotation at the top of this entry suggests, such events are learning opportunities. I am, honestly, afraid for my life—and I’m pretty sure I’m not being melodramatic about interpreting the latest medical information to this conclusion. It is awful to feel this way. It is lonely and crazy-making, but it does clear my vision. Like a woman washed ashore from a shipwreck, I can gaze at the horizon from my island and see very far. I can see what is important. I am giving up on being cured. I just want to be here. With Andrew and Jay. If you find my bottle with my message, cast it back into the sea—not so that the right doctor will see it bobbing in the waves and send a boat to my rescue—but so that the world will know, my son will know, I am here.

10 Comments

  1. Amy said,

    Dear Rebecca,
    I have long understood that when I haven’t spoken with you, your blog is the easiest way to “catch up”. But more recently I realize, I almost miss your words as much as your voice and your person. It is such a joy when I realize you have a new posting, even as I begin to read, and other emotions sometimes take over. I hear you! I am so glad you are here!
    Love Amy

  2. Alicia said,

    If I was there, I would like to hold you hand for a little while.

  3. Rebecca Stanfel said,

    Hi Alicia. I wouldn’t mind some hand-holding. My Mom was here and did a good job of this important task; Jay’s good, and Andrew is still in training. Thanks for staying in touch

    Amy, thanks for the kind words. I’m hoping my voice won’t be absent–from the phone or the blog– as much as it has been. Thanks for keeping me sane during the hospital evenings.

  4. Miriam said,

    As Amy said, even though the words are painful for you to write and for us to read, please keep them coming — we hear you here in DC, too.

  5. Jan said,

    Rebecca,
    Once again your writing has brought tears to my eyes and you have surprised me by your ability to find beauty in the least likely of places. I am looking forward to laughing with you over lunch on Friday. Love, Jan

  6. Tonya said,

    Rebecca,
    Please know your always in our thoughts, wish we were closer! Would love to sit by your side and dream of the warm weather of Palau! Give Jay and Andrew a big huge from all of us!
    Tonya, Hayes & Lilly

  7. Cathy Krohne said,

    I just wanted tosay I am reading your words and saying a prayer for you for healing and strength. I am going to NIH in Bethesda,MD tomorrow. I am going for a screening to see if I can participate in a Sarcoidosis Clinical trial.

    If they can find no evidence to confirm I have it in my heart, brain or eyes, I will qualify. If I do, at least I will understand better the symptoms and problems I am having and once and for all accept that prednisone will be a part of my life from now on and that it is time to add methotrexate or Imuran. If accepted I will be helping all who have this disease, and that makes it worthwhile to go through the illness.

    You are too young, your family is too young to be suffering so much. I cannot tell you how it shakes me into realizing that I have way too much to be grateful for to feel sorry for myself.

    My condition is worsening, but slowly and I am 52 with grown children and grandchildren. Rebecca do not give up the fight. Keep looking for answers, believe….. BELIEVE that you are going to come out the end of the tunnel and into
    the bright light of day and climb to the top of the mountain again. Keep looking… the answer is out there and you are going to find it.

    I do not know you, but I care for you and know that your angels and those of so many, more than you know are pulling for you.

    Hugs and Prayers from Kansas City,
    Cathy Krohne

  8. Rebecca Stanfel said,

    Tonya and Hayes…Thank you for reading and keeping up with me, even though we have been horrible at keeping in touch. We’re going to send a real e-mail soon, and then hopefully we can talk. Thanks for keeping us in your hearts.

    Cathy…Many thanks for your prayers, good wishes, and kind words. Your comments have always been inspiring; I’m sorry for not writing you back sooner. You are incredibly brave to be taking part in the clinical trial. Thank you for furthering research for all of us with sarcoidosis. I know they are collecting my data from the cytoxan, so I, too, hope to provide data for other patients. Yes, I will keep fighting. You will keep fighting. We both have a lot to be grateful for– and upset about. I like to say, there is no hierarchy of pain. We are pulling for you here, just as you are for us. I’ve taken both methotrexate and imuran. I’m not a doctor, of course, but if you ever have any questions about my responses to drugs (I’ve also done lots of prednisone and enbrel), please e-mail me at chronic.town@hotmail.com. Same goes for all readers.

    Alicia…I ordered the book you recommended in your previous post. It is amazingly helpful and is making my stomach feel a little better. Thank you!

  9. Cathhy Krohne said,

    Rebecca,
    I wanted to let you know that no sarc was found in my eyes and all though I have some heart issues they are not sarcoid related and will not keep me from participating in the trial. I will fly back out to NIH on May 3 for more tests and to begin the trial. It is a one year commitment. I can bail at any time, but I am determined to see it through. I will begin on oxygen after my next visit… reluctantly, but I know myself it is time.

    Have you been to NIH? I thought perhaps I read on the log that you had. They were really good and the satisfaction of talking with doctors, nurses and techs who know what sarcoidosis even IS was a new experience.

    I think of you and check your log every few days. I have been reading since shortly after I was diagnosed. It seems that Andrew was about 2 1/2 or 3. Thank you for sharing your life. I know the energy it takes sometimes to write it down, and I know that sometimes once you start it flows like tears and almost seems unstoppable….

    Together we are better…
    Hugs from Kansas City,
    Cathy Krohne

  10. Rebecca Stanfel said,

    Dear Cathy,
    I’m glad you can participate in the NIH trial. And I’m grateful that you check this site every few days. It means a lot to me to have people reading and commenting. It really helps to not feel so alone with this disease and all the changes it has wrought in my life (and my family’s, and my parents’, and my husband’s parents’, and my friends’, and my siblings’, and….I could go on for a while). Having you read and write makes me feel like we are part of a community, not isolated sick people with weird forms of a weird disease.

    I’ve never been to NIH, but I’m glad to hear that you were treated well. Too often, we are not! I’m writing this from Rochester, MN, (Mayo Clkinic) where I got sent by my local docs to see a GI doc and cardiologist who can shed some light on the recent problems I’ve been having. With the exception of the cardiologist I disliked (and that was merely a personality difference), I, too, have been treated well and have found that doctors and nurses have a refreshing familiarity with sarcoidosis). So far, I’ve had what feels like seven thousand tests (OK, I’m hyperbolizing a little…more like ten, but one of them did involve swallowing a camera and having it biopsy my small intestine. ;-)). I’m supposed to get results of this battery of testing on Monday, and then on Tuesday get pulmonary function testing, probably receive my every-other weekly chemo, and hopefully squeeze in a visit to the pulmonogist, just so I can get care centralized in one location, in case another crisis presents itself. (I’m thinking if there’s going to be another hospitalization in 2009, it should be here, not at our local place).

    Frankly, I’m relieved the disease isn’t in your eyes. I met someone at Cinci. with ocular sarcoid. and it was horrible. And you (and they) are SURE your heart issues aren’t sarcoid. related? The only reason I ask is that when I had my first presentation of cardiac sarcoid., it showed up mainly as a conduction issue (as best I can understand, electrical malfunction in my heart caused by granulomae interfering with electrical pathways). At the same time, I started to get unexplained enlargement of the right side of my heart. Initially, the cardiologist and sarcoid. people said the R heart stuff was unrelated. But, later they changed their minds. Once the conduction problems were controlled with treatment, the R heart stuff stabilized. That’s one reason I’m here at Mayo now; cursory tests done at home showed R heart problems again. Hopefully, all will be well. And with you too.

    I’m sorry you have to start on oxygen. Having to be on oxygen would bug the hell out of me. But I hope at least it makes you feel better. Do you mind sharing the drugs involved in the clinical trial? If not, I totally understand.

    We are indeed better together, as you said. Hugs right back at you from Minnesota (and soon from Montana). Hang in there. We can do this. We all can. I admire your courage.

    Rebecca

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