A day without pain

A day without pain is not just a dream anymore. Thanks to my AMAZING PT at the rehab center, my scar tissue is finally beginning to yield and my pain subside.

Near the end of our session on Wednesday, Janice ripped some scar tissue on my side and I felt my spine … pop. She ripped another cord, and my spine popped again. Four times she ripped, and four times, my spine popped audibly and I felt my muscles relax. It finally worked, and our thesis was proven — all this time, the webs of scar tissue have been holding my sin to my fascia, my fascia to my muscles, my muscles taut, and pulling my spine sideways at a particular vertebra.

When enough scar tissue had been broken, tamed, or realigned along my muscle, the final cords still held the muscles taut, making them ache, and the vertebra pull out of place. But when those final four cords were broken, the muscle was released, the vertebra freed –

and so was I. Thursday and Friday were days without pain. It was incredible. Amazing.

I’d almost forgotton what it was like to not suffer through the day, lying down to relieve the pain, and medicating the rest away.

It was incredible.

It’s back today, but I see Janice again soon, and now it’s easier to believe that I can overcome this pain, continue therapy, and move on with my life.

I’m going to move on with my life.

Next week, I’m going to try to talk more here about the rest of my life — the research, the consulting, the book(s) I’m writing, and the wonderful people I’m meeting who do amazing work.

Every Friday will be Scientist Friday here on the blog; I’ll introduce you to an amazing woman scientist and her work, and include a link to some fun activities that you can do with your kids to help them learn about planets, comets, asteroids, and the sun.

Planetary science is amazing — and I’d much rather talk (and think) about cool science as I work toward healing.

So. I’m looking forward to Fridays. Come back then?

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.

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

Happy Birthday!

Happy Birthday, Marty!

We’ve been BFFs since way before friends scribbled it in our yearbooks, confidantes before it was cool, and living parallel lives through four years of high school, four years of college, and all the degrees and turmoil that came after –

And now we’re both moms of two adorable, wonderful, spirited, all-engaging little boys. and you have a stepdaughter besides!

You’ve done good, my friend.

Happy Birthday!

Susan

Can scar tissue even BE chronic?

Discouraged.  No matter how hard I push, how much I try, how big I dream, ever since the cancer, I’m stopped in my tracks more often than not.

Take this weekend.  WhyDaddy cleared the decks, took over the parenting, and gave me two solid days to work.  The first day went wonderfully.  I crossed off item after item on my to-do list, and prepared for a full day of writing and revising on Sunday.  On Sunday, I woke up in pain.  There’s been pain since early January, but I’ve been in treatment for it.  Physical therapy to rip the scar tissue off the muscle that is pulling on the bone, and more physical therapy to realign the spine and everything else after the scar tissue lets it go.  I’ve been working hard at it, trying not to resent the time that it’s taken (8:15 to 11:45, nearly every day of the week).  But this weekend, it built up to a point where I couldn’t function.

And the lack of sleep wasn’t helping.

I took a pain pill on Friday after I wrote that blog entry, and finally, finally was able to rest.  Another on Saturday, and I got a full night’s sleep.  But Sunday — no way.  And today.  There’s no writing.  There’s no working.  There’s only physical therapy and recovery, pain pills and rest.

And it frustrates me to no end.

Only this morning I sent a note out on twitter, floating an idea that I would write about more than cancer and recovery.  I was so tired of focusing on it, and so hopeful that I could muster the strength to write about space, about science, about the amazing women I know doing space science and what they’re achieving.  My twitter friends were very supportive, and I resolved to start moving on on this blog.

And then I walked into physical therapy.

After an hour of my therapist icing my chest, ripping layers of the scar tissue so that the skin would move separately from the fascia (a slippery layer like chicken skin, between your skin and the muscles below), and the fascia from my muscle, of tissue work deep inside my chest, mobilizing the areas under my arm and over my rib cage, continuing the work so that one day when I breathe, my whole chest won’t move with my rib cage — after all that, my therapist and I had a heart-to-heart.

The scar tissue is chronic.

It’s not responding like scar tissue usually does, with a few post-surgery sessions.  It’s now a sinewy mass inside my chest, stretching with its tentacles to reach my skin, my fascia, my muscle, my ribs.  It wraps itself around my insides, binding them and stretching the muscles until they ache.

She rips the scar tissue regularly.

But that just makes it angry (I imagine), and it reaches for more after it recovers. I stretch, buying myself time where the pain is less, but it comes back when I sleep, or when I type, or when I do anything else, for it doesn’t get tired, and it doesn’t take breaks.

It’s the worst case that she’s ever seen.

And although she’s worked with thousands of patients in rehab, and she’s been able to relieve the pain of all but one, she’s not sure if this will be enough. We talked about options, and there simply aren’t many.  I’m in physical therapy for this three times a week already.  Any surgery would simply create more scar tissue.  My post-op treatment was good, for the scar tissue is roughly aligned to give me full range of motion, where typically it would be a nest of spaghetti and I would have difficulty moving.  There’s simply a lot of it, and it’s tenacious.

Chronic.