The National Cancer Institute

February 24, 2010

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.

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


December 8, 2007

Neuropathy is the name of what’s happening to me this week.  It’s called peripheral neuropathy, and that phrase can mean anything from a tingling in the patient’s fingers and toes, which I first experienced last Friday, to real pain, to the near-total loss of use of one’s legs, which happened to me on Tuesday night. 

I’ve been very lucky not to develop this before now, actually.  Over a third of cancer patients do develop some neuropathy over the course of their treatments, so I’m not very worried about it right now.  It’s likely just a side effect of the chemotherapy treatment that I’ve been receiving for the past 10 weeks (Taxol).  And that’s why we’re taking a break from chemo this week.  Hopefully the week off will allow my system some time to recover and the pain to diminish.

Already, my legs are responding more to me (no more wheelchair!) and I can feel my left foot.  My right foot and leg, up to the knee, is still tingling and painful to the touch, but I hope that will also resolve in the next few days.  Thankfully, although my fingers tingle, they are not painful and I can still type(!).

Our meeting with the oncologist on Thursday went surprisingly well, this development excluded, and we got to meet with the radiation oncologist for the first time as well.  IF the neuropathy resolves by next Wednesday, we will go on with the treatment and simply add another treatment on to the end, making my last treatment December 27.  If it doesn’t resolve, to avoid futher nerve damage, we will continue with a reduced dosage of the Taxol or start a new chemotherapy drug regime, which may entail a much longer set of treatments extending through January and beyond.  That would suck.

The possibility I had hoped for — going straight to surgery in a few weeks — is not a viable option at this point.  The tumor is still present and of large enough size that they’re not comfortable operating since they can’t be sure to get clean margins (those magic words mean they got all the cancer plus a bit of healthy tissue around the edges, ensuring that the cancer cells are gone) yet.  We want clean margins.  So if we must wait, we must wait.  But waiting is scary, since IBC spreads so fast.  We need to get back into active treatment on Thursday.

But first, I need to go check on my little boys and see if they’re done with their naps.  Have a safe weekend, everyone.