Testing. One, Two, Three, Testing

January 18, 2007 at 2:15 pm (Uncategorized)

Tomorrow’s a big day. I get to drive four hours to Billings at the crack of dawn and have a colonoscopy. Then I get an endoscopy. Today, in preparation for tomorrow’s delights, I am getting to swill laxative and spend most of my time in the bathroom, contemplating matters of digestion better left unsaid. Monday will be another big day. I get to have my liver biopsied. No need to empty my innards for this biopsy, but I do get to thrill myself in the run-up to the procedure with thoughts of being harpooned with a large needle in a vital organ. At least both days of procedures involve being heavily sedated beforehand. There are some things – harpoons in the side and cameras in your intestines, to name a couple – that I’d rather sleep through.

Testing is the the sine qua non of managing sarcoidosis from a medical perspective. The disease, which can infiltrate any damn organ it feels like, is elusive. Once you have a systemic disease – one that impacts several organs – it’s easy to blame any symptom on sarcoidosis. Does your heart flutter? Must be the sarcoidosis. That pain in your side? Sarcoidosis. Rash on your face? Sarcoidosis. Tight little cough? Sarcoidosis. Add a catchy refrain and you have the makings of a Sondheim musical – or dangerous assumptions. Yes, the pain in your side could be sarcoidosis infiltrating your GI system, but it could also be appendicitis or a gall bladder attack, and leaving it alone, under the misguided belief that all things bad are caused by sarcoidosis, could kill you. Take my liver. The reason they are doing the biopsy isn’t to prove I have granulomatous cells – the marker of sarcoidosis – in my liver, but rather to rule out other liver diseases that could be hiding in the coat tails of the sarcoidosis.

Being medically prudent isn’t necessarily any fun, though. I’ve been tested for so much that I think my doctors could start a sizable sewing circle with the IV needles left over from my procedures. I’ve had more CT scans and MRIs than I can count; I’ve had spinal taps and EMG testing on my nerves; I’ve had electrical studies to assess the likelihood that my cardiac sarcoidosis will kill me without an implanted defibrillator, and a right heart catherization to check for pulmonary hypertension; I’ve had stress tests and stressful tests; I’ve worn heart monitors for thirty days and three days; I’ve had my lungs biopsied and then assessed in God knows how many rounds of pulmonary function testing; I’ve had X-rays and ultrasounds; and I’ve had enough blood drawn to keep an armada of vampires content for a decade or two. I’m tired of being tested. And I’m just plain tired. In my paltry efforts to psych myself up for the colonoscopy, endoscopy, and liver biopsy, I tell myself that it’s only three more procedures, that I’ve undergone worse things, that I can do this. Yes indeed, I can do this. I can swig the laxatives and listen to my guts roil and rumble until I dash to the toilet every fifteen or so minutes; I can follow the directions given by the doctors. And I will do it. But I am tired.

In addition to exhausting me, all this testing leaves me perplexed. I’m never quite sure what to hope for in the run-up to the procedures. For example, should I be hoping that the liver biopsy reveals significant evidence of sarcoidosis? After all, hepatic sarcoidosis is rarely fatal; even at its worst, you can get a liver transplant, and maybe another drug could knock out the disease. But is it a good thing to root for the disease taking over yet another organ? Should I instead hope they find some other treatable condition? But what if this condition is worse than sarcoidosis? What if I then have a chronic illness and some terrible liver disease? Or should I hope they find nothing, that this can be unsatisfyingly chalked up to the mysteries and vagaries of sarcoidosis? Who knows?

Jean-Paul Sartre wrote eloquently about the modern (and post-modern) necessity of letting go of hope in order to live fully and openly. “One need not hope to undertake one’s work,” he quipped in Existentialism is a Humanism. I’m sure that I am misapplying this dictum by thinking of it in terms of a lowly intestinal exam – You know, “One need not hope to undertake a thorough Rotor-Rooting and then a harpooning…” – but it helps. Not that one needs any hope for these procedures, simply enough faith in modern medicine to arrive at the appointed time with empty innards. Where hope does become problematic is in the realm of expectations – what should I expect, and what should I do if these expectations aren’t fulfilled? I’m learning that sometimes it’s better to leave hope at home and just go get another damn IV and deal with whatever results are found.

Please keep me in your thoughts tomorrow and Monday. Maybe you all can do some hoping for me.

4 Comments

  1. Paul said,

    I will be thinking about you – keep your chin up

    Off the topic – I ran into a friend on the weekend who I hadn’t seen for several years to greeted with “I’m dying” as an answer to the “how are you?” question.

    anyway I talked to him for a while and it turns out his lungs are gone and he will need a transplant in a year or two. He too has sarc.

    It really hit me hard that the first sarcie that I have actually met was a guy who while not a close friend is one I’ve known most of my life. On a sarc scale of 1-10 (with 10 bad) I’m at about 5 and He’s about 9.

    I’m left considering how I feel and it’s strange – I feel a mixture of :
    1. Gee I’m glad I’m not as bad as him
    2. I hope my disease doesn’t progress like his
    3. I hope he can get some relief or get better
    4. 50 other strange things

    just strange!
    Paul

  2. Cathy K. said,

    I will be thinking of you and hoping for the best. I too have sarc…. so far only known to be in my lungs. Just dx in June. I have been amazed reading your posts… new and archived.

    So many thoughts have been expressed in them that I did not think anyone could understand. The tendancy to isolate from loved ones, the post where you spoke of doubt, doubt of employment, your job as a mother, of being “less” because of sarc.

    I am undergoing my first flare since my dx, brought on by, i believe, bronchitis, ear and sinus infection. Have missed over 1 1/2 weeks at work and had tapered down to 10 mgs of prednisone…. now right back up to 60 where I began AND with the addition this time, of inhaled steroids too. No one, I am sure can understand better than you, how it feels like a failure and perhaps a first slip on a long and treacherous journey.

    You will be in my thoughts and I will be checking every few days to see how you are doing.

    sending good vibes and hopes from Kansas City, MO
    Cathy K.

  3. Morfeen said,

    I’ll be praying for you. Hope you get the best news possible in this situation.

    Oh yeah and check my site, I commented and linked regarding your blog, hope that’s OK with you.

  4. Cathy K said,

    are you okay?

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