Juzo

Got a Juzo. Wore it the first day til late afternoon, when it started to feel too tight. Same thing happened next day. Haven't worn it since, but will today. At least I only have to wear it for 6 months, and those 6 months require long sleeves.

Have decided to move the gigantic and hideous Flexitouch into a box and into a closet somewhere. It's a constant reminder of cancer, and I don't really need it right now. I cannot imagine using it for an hour every day. Will check with PT again on the game plan for the bloody thing.

Compression

Physical therapist says Lymphedivas are a no-go due to insufficient compression (in her opinion).  Uncle's recommendations are Sigvaris and Juzo.

Lymphedema

For the record, I just started treatment for this after finally 'fessing up to the reality that the tingling in the back of my arm just above my left elbow was not going away (or, in the words of my oncologist, was "persisent and escalating").

Lymphatic massage 2x/week for 6 weeks or so consists of 45 minutes of opening up various parts of the body into which the stray fluid can escape, and then opening up the affected arm. And then some grueling exercises, which need to be done daily.

After that, 6 months of wearing a compression sleeve (hurrah, winter months!). A friend has told me about the groovy designs at Lymphedivas (the name alone makes me want to buy), and my fellow-suffering uncle has told me about two good manufacturers, though I can't find them at the moment.

After THAT, praying it doesn't come back, and looking into the $9,000 massage machine that insurance may pay for but Medicare does not. You know... in case it comes back after I turn 65. Oh, and the sleeve-wearing forever on airplanes.

It's not visible to the naked eye, so I don't care much. And the oncologist says there is no correlation between lymphedema and recurrence, which is the only salient point in this post.

Enough.

I think this blog has become what my colleagues refer to as an "open switch." In other words, a situation that needs closure.  But since my cancer is the invasive sort, there won't ever be closure. There will only be me, moving on and refusing to accept the idea of recurrence -- and this blog -- as permanent parts of my identity. Walking away.

Yes, I'm a writer. Yes, I make sense of things by writing about them. Yes, perhaps some of this blather might comfort a fellow-sufferer. And yes, the showdown could continue. But if the cancer comes back, who would want to read about dying? I wouldn't. And I certainly wouldn't want to write about it.

Instead, I'm going to shuffle on down the road and try really hard to think about more important things. Maybe things beyond my own pitiful self.

Over and out.

xo

More on support

Social worker at hospital, check. Seems to have some methodology she's willing to share regarding conquering the "Damocles Syndrome" she says I have.

ihadcancer.com, check.  How did I not know about this til now? Plenty of cursing in evidence, and it's been nominated for a Webby Award for Best Online Community. Yay.

And in the spirit of an old friend's "yin-cation," in which those of us whose days and weeks are filled with nothing but going and doing and producing (yang energy) bring life back into balance by deliberately indulging the yin with sensual pleasure, beauty, relaxation, joy and rest, I did the following:

• Rather than racing home to log in and start the work day, stopped at Whole Foods after dropping 4yo at daycare for a Naked Protein drink and a new blend of coffee. Remarkable? No. Do I ever do that? No.
• Rather than filling a Thursday night with laundry and sheet-changing and washing dishes, took a peaceful bath, complete with sesame oil. Slept like a rock.
• Rather than filling a Friday night with homework and chores, fired up the grill for the first time this year -- eggplant, salmon, cherry tomatoes, grapefruit -- then got out all my oils and Ayurvedic potions and gave myself (and my mom!) a fragrant, relaxing 7-step facial.
• Rather than filling a Saturday with yard work and general house cleaning (ok, I did some of both and vaccuumed the car, sue me), created more Ayurvedic potions.

And you know ... cancer, fuck you, you fucking fuck. You were supposed to be a mere blip on my radar, not a permanent occupant of my psyche. Or my body, for that matter, but that's a whole different discussion. I plan to beat you to death, my friend. No pink ribbons, no "survivorship" BS... I want you out of my psyche. Bring it.

Precious

Just heard, via Facebookistan, that a dear friend has died, leaving two young boys and a widow behind. He was my hero... we shared a dream of ditching the corporate rat race for a job in education.... and he did it first! While holding a day job, he attended night school at Hunter College for an advanced degree in music, with the intention of teaching music to middle school kids. And he made it, and began teaching in the public schools in Hastings-on-Hudson, NY. His funeral was a full house, with HUNDREDS outside, listening over loud speakers. Surprised? No. Aside from being my personal hero, he was a beautiful human being.

So I've cried my eyes out for two hours... and the 4yo has hugged me and brought me special drawings to make me feel better, and I have taught her, as I try to teach her each and every day, that life is precious. Life is too short to be unhappy. Life is too short to hold a grudge or put off doing what we really want to do. And that the most important thing in life is to share your love and yourself with the people you love and with people who are less fortunate.

RIP, Dan Kerness, my fatty. Thank you for being living proof that escape is possible.

Woot!

Imerman's Angels has found me a local match who has (presumably) been where I am now. Yay.

CancerCare, after a bit of hesitation (don't ask) has let me into its onlint support forum.

That is all. Happy weekend, everybody.

Dying of Cancer Day

I listen to public radio for an embarrassingly large proportion of the workday. I turn it off when it annoys me or prevents me from thinking.

Today seems to be People Dying Of Cancer Day at my local station. First an interview with Loudon Wainwright Jr talking about "I probably won't be around for that" and "Had to tell my 8-year-old I was dying"... and now poor Roger Ebert, 70 years young.... and they're devoting the afternoon to it.

ENOUGH ALREADY.

Chapter Two

For the record, my game plan when I was diagnosed was this:

1. Get through treatment.
2. Get on with life.

No "survivorship" crap. No pink ribbons. No place for cancer to become part of my identity, a permanent fixture, a black cloud.

I'm beyond sad to report that even before my treatment has ended my game plan needs adjustment. Anxiety has gotten the better of me these days. I live with the constant fear of recurrence, feel like I'm dying all the time, and am waiting for the other shoe to drop. Thus, the name of this blog.

OK, it's not a new fear. But I have realized lately that it (colors / infects/ informs ) my every waking moment. This cancer thing, as it turns out, can't actually be shrugged off as easily as I'd hoped.

Yes, I'm joining support groups and taking advantage of the ample breast cancer resources at the hospital where I'm being treated.