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Of Fear and Joy

May 28, 2013

“I think we should stop the Erbitux.”

These words, spoken by my oncologist just a few short hours ago, ought to have been music to my ears. Erbitux is one of three colon cancer therapy drugs I’ve been on since late January, and the only one that causes substantial side effects for me: extreme sun sensitivity, apparently not alleviated by sunscreen, that causes my skin to peel and flake even after minimal exposure; low magnesium levels, which often means an extra hour in the chemo chair for a magnesium infusion; skin rashes and extreme dryness that can be painful and itchy; tiny cuts/cracks on my fingertips that are generally tolerable but made my last crawfish boil an agony; long, fast-growing eyelashes that at first I welcomed, except that they’re wiry, grow to the very corners of my eyelids, and often point in the wrong direction, so way too many of them end up IN my eyes; and the list goes on. It’s also the only drug of the three that I have to have infused weekly, instead of biweekly, since a stronger dose that could be given every two weeks gives me a three-day migraine.

So I do not love Erbitux, and one part of me is excited to cut down on my trips to the hospital for infusion, significantly reduce the hours spent in the chemo chair, and reclaim my summer and the sun it promises.

This decision should make me happy – the problem is that it feels premature. After my last scan (on April 18) came back clear, my oncologist said that we’d scan again in July – and if that one were clear, we’d decide which drug to eliminate from the mix. I was content with that plan; a slow, cautious reduction in treatment, based on evidence that it was no longer needed or could be cut back. But we were forced into today’s decision by a 10-centimeter stretch of esophageal ulcers, nasty things that kept me from eating and put me in the hospital for four days a couple of weeks ago. The suspected cause is doxycycline, an antibiotic that I’ve taken twice daily since January to save my skin from Erbitux.

So I’m in a bind. Obviously, I need to eat. Three days of minimal nourishment plus nine days on a liquid diet isn’t good for my weight gain goals. But they don’t want to give me more doxycycline, and I can’t imagine tolerating the Erbitux without it.

Such is the dance between fear and joy for a cancer patient. We count the days of treatment, hoping for an end or at least a break – and when it arrives, we’re afraid it’s too soon. As bad as the side effects might be (and mine could be much worse, but they’re still undesirable and inconvenient), we often prefer them to what we fear is the alternative – a recurrence.

And it’s hard because there’s no right answer. Cancer is not black and white. Each person, each diagnosis, each experience is different. So we do what we can to be comfortable with the decisions made regarding our care.

I next see my oncologist on Monday. I know it will be a long appointment; I’ll do a lot of reading and researching over the next five days, and arrive armed with a notebook and a list of questions. And I will leave as confident as possible in how we decide to proceed.

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9 Comments leave one →
  1. kpozzoli permalink
    May 28, 2013 7:34 pm

    I feel you. My last scheduled chemo cycle is in a couple weeks. On the one hand I’m ready to have energy, and to start gaining weight, and to be able to poo without it being a whole thing! On the other, I’m terrified of recurrence. Aaahhhhh!!! We are strong, positive, powerful, healthy women, Yings!!!

  2. deb herrmann permalink
    May 28, 2013 8:41 pm

    I appreciate and applaud your writing on here. Choices,decisions and information are all so important in this battle for you. You have SO MANY people praying and supporting you and your docs behind the scenes. I wish that could be enough to make your daily life smooth,easy and side-effect free. And I wish I could share the chubby gene as well! Keep up the good work and attitude..Go Yings and Ho’s! haha…

  3. May 29, 2013 12:25 am

    It sounds like your doc is going on gut and evaluation and I hope she’s got a good gut. If you ever feel something in your gut, she’s going to appreciate hearing it. It’s a team effort since it is an experience that is specific to you 😉

  4. May 29, 2013 12:26 am

    p.s. I love you, Rach.
    ~Rain

  5. May 29, 2013 1:28 pm

    Just keep listening to what your body is telling you as you wade through the myriad of gray while researching the black and white. Sending you blessings of clarity for your appointment on Monday! Wacky & I send you boatloads (make that mountains) of love, Yings!
    Criquette

  6. Katie permalink
    May 29, 2013 5:29 pm

    ánimo, rachel! i’m thinking of you from across the great blue ocean. you’ve got your head in the right place, trust it.

  7. May 30, 2013 2:25 pm

    Good luck with your upcoming appointment. That bittersweet and uncertain feelings is so understandable, and it’s good to hear you have a follow-up appointment soon. ~Catherine

    • Know More CRC permalink
      May 31, 2013 7:27 pm

      My heart and prayers are with you. May you and your team have perfect wisdom for your treatment plan.
      –Marcia

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