Enough is Enough

September 28, 2007 at 1:53 pm (Uncategorized)

I’ve reached this point before. There have been several times since I’ve taken up residence in the weird world of Chronic Town when I’ve thought to myself, “I can’t take this anymore.” Luckily in these instances – like when my liver biopsy went awry and I had to spend a week on my back or when the prednisone I take to treat my sarcoidosis gave me diabetes – I’ve always had more resilience and fortitude than I gave myself credit for, and I learned to live with a new obstacle or a new piece of bad news. But here I am again. And I really can’t take this anymore.

Earlier this week we returned from my brother’s wedding in southern California. I was tired from the traveling, but genuinely happy. It had been wonderful to celebrate Ken’s marriage and to see far-flung relatives. Better yet was meeting Ken’s new wife, Mai Lin, and her two sweet and spunky daughters. We had eaten good food, worked hard to help out at the various wedding events, and danced like wild folks at the reception. Even with my foot encased in a boot for my stress fracture, Jay and Andrew and I had torn up the dance floor for a few songs. Then Andrew re-discovered his cousin Paul and refused to dance with anyone else the entire evening.

The day after we arrived home, I had to visit my internist and my rheumatologist. I should have known that my sense of well-being wouldn’t survive a trip to the White Coats, but I had repressed the fact that once doctors start poking and testing my body, they usually come back with bad news. Especially this week. From the internist I learned why my reproductive system is out of whack. I had half-hoped that I was pregnant. But blood work revealed quite the opposite. Three years of prednisone therapy has taken its toll; the drug has messed with my hormones and sent me into early menopause. This explains my interrupted menstrual cycle, my mood swings, and my hot flashes that leave me (and anyone standing within ten feet of me) soaked in sweat. “Now don’t worry and make a big deal out of this,” the doctor told me. “As soon as you stop the prednisone, your hormones will return to normal.” You can always count on a doctor to trivialize bad news. How could I – a 36 year old woman with a serious baby craving – possibly worry about something as insignificant as early menopause? Silly me. Of course, the doctor didn’t have an answer to my concern that I will never, ever, in three billion years, get off the prednisone. Every time I dip my dose below ten milligrams, I start having cardiac symptoms.

The hits just kept on coming. My fractured foot, which broke because the prednisone weakened my bones (do you sense a theme?) is not healing. A recent MRI of the foot indicated that the sarcoidosis might be playing a role in this. Apparently granulomae (the clusters of white blood cells that characterize sarcoidosis) can form in scar tissue of all kinds; it is likely that this type of growth is preventing my bones from re-fusing. There’s not much the doctors can do except send me to an orthopedist on Tuesday to have my foot cast for another eight weeks. I won’t be able to drive, or walk, or stand for long periods of time.

Then there’s the matter of my liver. A recent test revealed that I have a non-malignant tumor called a hemangioma. This type of tumor is fairly common and usually poses no threat. Mine, however, is really big. And once these things get too large, there is a risk they will rupture and cause significant internal bleeding. My doctors aren’t sure if mine is big enough to warrant prompt surgery to remove it. They’re figuring out what additional tests to conduct and which specialist to send me to.

I came home from the White Coats and didn’t know what do with myself. I sort of felt like crying; I sort of felt like breaking things and screaming obscenities; I sort of felt like curling up in the fetal position under fourteen blankets; I sort of felt like shutting down. I did none of these things. Instead, I drove to Andrew’s pre-school and picked him up and brought him home. We ended up making a sturdy pirate’s scabbard for him by cutting out two scabbards from cardboard boxes, covering them with aluminum foil, and then gluing them together. Once the Elmer’s had dried, we had a pirate sword fight – he with the new scabbard, me with his old, soggy sword. We yelled “Aaargh” at each other and threatened to make each other walk the plank. It was fun and it kept me going. I don’t know what I would do with Andrew. He needs me – all of me – and this prevents me from shutting down in a morass of self-pity and overwhelmedness. He keeps me alive – in the fullest sense of that word.

Since then I’ve been putting one foot in front of the other. I’m trying not to think too closely about my baby-making equipment shriveling up prematurely; I’m ignoring my foot pain and the ache in my liver. But beneath my plodding I am deeply tired. My body has been damaged by the very treatments that were supposed to cure it – and still, the damn disease persists, worming its way into my bones. If I didn’t have Andrew, I’d probably spend more time raging at the sky, pondering where to go from here. But, as it is, I already know where to go. I’m going where my next step takes me. I’m going to keep putting one foot in front of the other and make dinner, do the dishes, cajole Andrew into brushing his teeth, read him stories, and fend off the worries that keep him awake at night. But, still, I don’t think I can take much more of this anymore.

3 Comments

  1. barb said,

    Rebecca..despair sucks. It sucks out loud. I am grateful that you can write and we can read. When I read your entry I thought of the following poem by David Whyte:

    The Seven Streams

    Come down drenched, at the end of May,
    with the cold rain so far into your bones
    that nothing will warm you
    except your own walking
    and let the sun come out at the day’s end
    by Slievenaglasha with the rainbows doubling
    over Mulloch Mor and see your clothes
    steaming in the bright air. Be a provenance
    of something gathered, a summation of
    previous intuitions, let your vulnerabilities
    walking on the cracked sliding limestone
    be this time, not a weakness, but a faculty
    for understanding what’s about
    to happen. Stand above the Seven Streams
    letting the deep down current surface
    around you, then branch and branch
    as they do, back into the mountain,
    and as if you were able for that flow
    say the few necessary words
    and walk on, broader and cleansed
    for having imagined.

  2. rebecca said,

    Wow, what a poem. Thanks Barb. That took my breath away. rebecca

  3. Paul said,

    Hang tough rebecca – thinking of you

    Paul

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