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.

Update

Diagnostic mammogram x2 showed no increase in calcification. Technician told me that 85% of them are benign. Would have been nice to hear that from oncologist 6m ago, but he doesn't care about my mental health, as I well know.

Hair grew back curly -- a new look for me. But I'm keeping it short, since I get SO many compliments on it. Who knew?

Felt a weird hitch in my left chest upon deep breaths, over a 24-hr period. No pain, just.... weird. I could actually hear a click when I breathed deeply. Urgent care doc on this Saturday night tells me this is typical of radiation patients. Calcified muscles in the chest wall rubbing together. Again, would have been nice to know this might happen, so I didn't have to feel like I was having a slow-motion heart attack. Forget about cancer *awareness,* people.... how about educating cancer patients, since their doctors don't?

Oh... and that dream of a trouble-free GI track post-app'y? Merely a dream.

More adventures in cooling

Thanks to this silly but inspiring article in the NYT, I'm off on another search for ways to beat hot flashes into submission. As with so many NYT articles online, the comments are more interesting and informative than the article itself.

And before you start thinking I'm being ridiculous, remember that I'm looking at 5 more years of chemical menopause, thanks to tamoxifen.

One reader suggested Polar-Products, which looks promising. Pretty sure I need a helmet liner for biking, a cool tie, and wrist wraps. If they work, I'll consider the vest. Bra inserts? I don't think so.

Just bad luck

OK then. Nobody thinks the app'y was anything but random, and nobody cares about the gallstones.  Kind of saw that coming.

Appendix no more

Had it out last week, thankfully before it ruptured. They also found gallstones, which my internet sleuthing tells me may be at least partially due to my hormone therapy.

While I'm not thrilled about the prospect of another operation, the idea of having a trouble-free GI track for the first time in my life is quite appealing.

Seeing GP today. Awaiting word from surgeon and oncologist.

Progress

Allrighty now! More meds = fewer hot flashes and less anxiety. (That would be Zoloft, for you fellow-sufferers out there.)

Turns out that caffeine and alcohol are quite reliable triggers of hot flashes. Just my luck.

Focus

Despite my best efforts to the contrary, I seem to be focusing on the 10% chance of recurrence rather than the 90% chance of survival. My subconscious is now turning every strange physical occurence, no matter how minor, into A Symptom Of Something Bigger... namely lung, liver or bone cancer.

Didn't think I'd need it, but I think some quality time with a support group is in order.

Not leaving the baby AND not living in fear of it.

p.s. Surgeon and MD do not think recent problem is related to lymphedema but recommended a visit w a specialist to learn more about it.

Choosing not to worry about it

Routine diagnostic mammogram today turned up calcification on the OTHER side. Was given the choice to have a biopsy, but also told it was probably DCIS and that waiting 6 months to size it again will not affect treatment options.

Trip to lymphedema clinic imminent, though surgeon says the problem may be temporary.

Tamoxifen, so far

The hot flashes don't seem more frequent, but they're definitely more severe. They've gone from primarily head and arm-based to full-body, and with prickly heat, which is quite uncomfortable.

Gonna be a looooooooong summer.

Lymphedema

Really? *sigh*

I work on a hot keyboard all day, so I guess I shouldn't be shocked to wake up to stiff fingers and knuckles. Plus I'm pushing 50, so.... finger stiffness happens in the morning. But this morning I realized that the swelling and stiffness were noticeably worse on my cancer (left) side. I'm right-handed, so it's not as if I over-used my left arm.

And I've not even started any real exercising yet. Research needed.

Reasons to love having very (very) short hair

1. No fuzz factor on rainy or damp days.
2. No management issues on windy days, while exercising, or while driving one's convertible.
3. No bed-head or hat-head.
4. No combs, brushes, or products are necessary.
5. No split ends.
6. No bad hair days.
7. Wash 'n' wear.
8. Makes hot flashes easier to bear.
9. Presumably will make summer in general easier to bear.

Wow. I didn't realize I had so many good reasons!

Returning to normal

.. or as close to normal as I ever get, anyway.

Got out the banjer last night, and looked for the gee-tar. Subjected the toddler to some stompin' old-time music tonight as well as multiple versions of our special song.