The National Cancer Institute

quotes me today in support of a proposed protocol, where patients report their own symptoms and side effects such as chemotherapy induced peripheral neuropathy (CIPN).  Called patient reported outcomes (PROs), the professional thinking is that patients will be more able to accurately and completely describe what is happening to them.  I’d say that this entire blog is a testimony to that — I pledged to write every day of my treatment about my symptoms, my feelings, and what I was going through, and, years later, I still get emails nearly every week from patients and the newly diagnosed looking for information — honest information — about what to expect, what other people feel during this time, and how to cope.

It surprises me, but it’s true.

So today I have just one message for the professionals dedicating their time on the Symptom Management and Health-related Quality of Life Steering Committee, which meets just down the street from me in Rockville, MD:

THANK YOU for your work.  Thank you for your time.  Please consider engaging PROs and continuing to advance the science and practice of symptom management.  Please keep working not only toward a cure, but also for medicines and physical therapy and techniques that mitigate the side effects of the cure.

Nearly three years after my diagnosis, I’m still in physical therapy four days a week for pain management, scar tissue reduction, and lymphedema (side effects of my double mastectomy) and struggling with sleeplessness and other side effects of required medications tamoxifen and aromasin.

I’m incredibly grateful for this opportunity to live, an opportunity that women diagnosed with inflammatory breast cancer twenty years ago did not have. But treatment now must come with an opportunity to live beyond the walls of the rehab center, to travel, to explore, to hug my children without pain.  It must.  And one day, thanks to your efforts and the efforts of thousands of oncologists and tens of thousands of patients, it will.

I know it will.  I’m asking you to feel the urgency that I feel, though, and make advances NOW.

Because when the snow melts and the skies clear over Rockville, I want more than anything to be able to take my children to the park, to coach their soccer teams, and to hug them unreservedly, without worry that their gentle hugs will crush the nerve bundles tied up with scar tissue across my chest and shoulder, causing me to fall to the ground or push them back as I gasp in pain.

I want to hold them close.

(picture deleted)

Please, keep working so that I can hold my children close.

6 Responses to The National Cancer Institute

  1. upsidebackwards says:

    You’re so eloquent. May your urgency – and your gratitude – lodge in the hearts of those who can and do help, study, and work towards both: a cure, and a cure for the cure.

  2. Linda Lawrence says:

    Great photo!:)

  3. Amelie says:

    It’s great to see you so happy in that picture!

  4. elizabeth says:

    Great blog. Thanks for all your hard work!

  5. Very good and usefu blog

  6. NYfriend says:

    Awww man, you know how to use words to evoke emotion! I’m welling up over here about to burst. I hope so very much that you are able to hold your children close for many, many joyful years. And I know that you will make the time joyful regardless of the pain your body might be feeling. I hope advances are made quickly so that your pain will less and your quality of life improves even more.

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