Monday, August 3, 2009

Wishing for a Medical Crystal Ball

Just as we cannot predict what will happen in life, we cannot always predict the effects of medical treatments.

I was thinking about this, as I began hosting my own pity party of one today -- due to the severe back and abdominal muscle pain that plagues me every day due to surgery done almost three years ago. Adding insult to this injury, I have to take Fosamax once a week because the chemo treatments had leached bone mass. Without the Fosamax, I'd be in osteoporosis at a relatively young age.

Most days I can handle this reality, but today it's too much. Today I broke down and cried. Today the over-the-counter painkillers aren't working. Today I feel helpless and angry at myself: that I wasn't prepared for this post-surgery experience because I didn't ask doctors the necessary questions.

Sure, I asked about the surgery and the chemo themselves: Would the surgery cause lots of bleeding? What were the during-surgery risks? How would the chemo make me feel? Would I lose my hair?

These are all valid questions to ask, and you can find tomes of information on what to ask doctors about various treatments and their side effects. However, what you often cannot find is accurate information on how a particular treatment regimen is going to affect the quality of your life years after the treatment.

Part of why this is the case is because each patient is different. However, part of why this is the case is because we as patients don't ask the questions that are needed to inform us of what we can expect in our post-treatment lives.

So as I was struggling to do dishes, I thought of the kinds of questions I could have asked in addition to the what-is-the-risk-of-this-treatment type of questions. I wish I had asked whether I would be in pain and/or sick for years after the treatments and how they would affect the quality of my life in years to come.

My doctors are wonderful and would've told me the truth, but it was my responsibility as a patient to at least be informed about the road ahead of me.

Even armed with this information, I would've opted for these exact treatments, for the alternatives were even more ugly. I'd rather be in pain every day as a result of surgery than as a result of cancer.

It's just that knowing the possible pitfalls of treatment in advance is just as important as knowing the positive effects of treatment. As patients, we need to know about these pitfalls in advance, if at all possible. And that requires doing research and asking doctors prudent questions.

And as I stood washing dishes and in so much pain, I thought that being armed with more information about what to expect post-treatment would at least have helped me cope better with the pain.

And today, even though I feel pain that seems too much to bear, I know I made the right choice -- a choice that would help ensure I'd have a tomorrow.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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4 comments:

  1. Hey Beth, Welcome home. I can't wait to hear all about China. I read your other blog, but didn't have time to comment. Is this recent since-I-came-home-from-China pain?

    Looking forward to catching up and pinching Ari's chubby cheeks. Blog as much as she allows you to about your trip. I want to know everything.

    Leaving for California tomorrow, but feel free to call if you have a chance.

    Jeannie

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  2. Have a great trip. Let's get together after regarding our collaboration and to watch both chubby-cheeked girls play. Should be fun. Ari's great until you put her down in the crib. Sobs and wails.

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  3. oh my gosh!!! beth!!! :) yay!!! congratulations on your new baby! :) oh my gosh this is SO exciting! And, a lot to get used to im sure :). its very hard adjusting to a new baby, and youre doing it ALONE!! i give you TONS of credit! i cant wait to hear more! im finishing up our dreadful move and then going on a 2 week vacation, which is why im MIA from reading and writing in the blogosphere - but i'll catch up when i can and i cant WAIt to learn more about china and your new little angel! :) all my best wishes! Alicia

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  4. Thanks, Alicia, for your well-wishes!! Good luck with the move and have a great vacay. We'll touch base, I'm sure, when you get back.

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