Monday, April 28, 2014

The Tin Man danceth


Alder and I had a rockin’ dance party in the living room this afternoon. I looked and felt like a cross between the Tin Man and a shy sixth grader at her first dance[i], but it felt great. We blasted CDs made by Brian and Nell and, when those ran out, we blasted top-40 on the radio. I got so sweaty I had to take a break on the balcony. When I got tired, I laid on the floor and danced with my legs in the air. Then I sat and accompanied Katy Perry on our new garage-sale drum.   

I’m sure we looked ridiculous, Alder doing running flips onto the couch and showing off his “moves,” me needing my hips oiled, but my body and soul rejoiced.

I thought of Deborah Cohan, whose video went viral after she and her surgical team danced in the operating room (OR) before she hopped on the table for her double mastectomy.

I don’t know Deborah, but she’s my age and had surgery about the same time I did (and it turns out we have mutual friends). Several people sent me a link to the video of her OR dance party and everyone seemed to find it inspirational. My reaction was more muted. I thought it was cool and gutsy, and it looked like fun. At the same time, it looked like fun I wasn’t having.

I thought of the inequity in care people get. I would have loved to dance with my surgeon and the OR nurses, but unlike Deborah, I’m not a doctor at the hospital where I’m being treated. I’m not a friend or colleague. I’m just a regular patient, and I can’t imagine the whole team taking the time in the zillion-dollar-a-minute OR and breaking the sterile field to indulge my desire for a dance party. If I requested a pre-op dance party I’d probably have been committed. In the moments before I lost consciousness on the operating table, I was subdued and docile, alone among strangers.

So ok, I was a little bitter about Deborah, and a little ashamed of my bitterness. I wondered if I was just jealous that I hadn’t thought of it, or that I wasn’t a VIP, or that I’d blown off medical school for an extended love affair with Alaska in my 20s.  

I’ve come to understand Deborah’s dance-gone-viral as more than an indulgence. Dance is her creative outlet; it feeds her soul, it triggers her body’s healing impulses, it connects her to her best self. She wants to inspire others to find the same joy.   

One of two women I’ll call my cancer pen-pals wrote me recently about the link between creativity and healing. She sent me the following excerpt:

“Cross-cultural anthropologist Angeles Arrien tells us that in many traditional cultures, when an ill person goes to the healer, he or she is asked four questions: When did you stop singing? When did you stop dancing? When did you stop telling your story? When did you stop sitting in silence? She calls these the healing salves. Numerous studies show that activities like drawing and creative writing—even knitting—raise serotonin levels and decrease anxiety.”[ii]

Deborah Cohan and her oncologist get this. Deborah wrote:

“My incredible oncologist Hope Rugo asked me what dance means to me because ‘I need to understand you in order to treat you.’ (Revolution within medicine is afoot!!) And then she scheduled chemotherapy for Thursdays, so that I will have energy to go to Ecstatic Dance Wednesday nights. This is an amazing life! [iii]

I have been reading a book called The Definitive Guide to Thriving After Cancer: A Five-Step Integrative Plan to Reduce the Risk of Recurrence and Build Lifelong Health.[iv] The title, along with the fact that I was hospitalized the day after I was given the book, catapulted the book to the back burner for two months. I’m wary of the swirl of enlightenment-regret-guilt-annoyance-confusion that the zealous naturopathic approach can induce in me, but I fundamentally believe in holistic healing, so I picked it up a few weeks ago.

Sure enough, the authors rely on a painful gimmick, “The Five to Thrive Plan.” Here’s a direct quote:

“As you can see, the number five is important to our plan. There are:

·         Five key pathways
·         Five core strategies, and
·         Five critical action steps.”

I swallowed my snobbery and forgave the gimmick, and it turns out the book is great. The authors probe the connections between our thoughts and our health, our food and our bodies, our physiology and our psyche.

For example, the authors cite a link between cortisol, a hormone that’s elevated when people experience stress, and depressed immune function: “Severe life stress may cause up to 50 percent reduction in NK cell [natural killer, or killer T-cell] activity by preventing the transcription of genes in that are necessary for cellular activity. Reduced NK cell activity leads to decreased immunity.”

Severe life stress … hm.  

The authors share numerous findings demonstrating the corollary, that positive feelings and activities can improve health. For example:

·         A 2009 study found that HIV-positive women who engaged in spiritual activities such as reading spiritual material, meditating or praying had less depression and higher immune cell counts. 

·         In another study, participants who were taught how to do a daily compassion meditation for six weeks had lower levels of a key inflammation marker; inflammation is linked to many diseases, including cancer (my persistent pericarditis is an inflammatory condition).

·         A 2012 study of police officers found that after a laughing episode, the activity of at least 23 genes involved in controlling blood sugar is altered for 90 minutes. “The net result is better blood sugar control and reduced likelihood of developing insulin resistance.”

·         A study of the autobiographies of 180 Catholic nuns (seriously?) found that those who wrote more positively lived significantly longer. 

·         A 2005 study of women with ovarian cancer found that those who were more optimistic about the future had, among other things, greater declines in CA-125 tumor markers – in other words, optimism impeded ovarian cancer growth.  

In college my friend Margaret and I took dance breaks whenever the organic chem molecules started to dance off the page. At home in Juneau, we’d kick the molded plastic picnic table in our big kitchen aside and family-dance to Dan Zanes or Ziggy Marley or Ali’s cheesy dance CDs. I don’t like alcohol, but I love going to the Imperial or the Viking and losing myself in the sweaty thump of the base.

I haven’t done enough dancing since my cancer diagnosis.

When did you stop dancing?

I didn’t leave the house today, unless you count the balcony, and Alder never got fully dressed all weekend. Yes, my child has been wearing a backwards Lego Chima pajama top since Friday night.

I’m sure I need to face reality one of these days – my messy Juneau house, my messy finances, my messy body – but right now my vision is trained on the pretty clouds in the sky, and I am dancing and hula hooping. I am singing, writing poems no one will read, cultivating and expressing love, banging on my new-to-us drum, cooking and eating a rainbow of foods, and – to use a John-ism I used to mock – finding my inner smile.


[i] It might be the latest Lupron shot – administered Friday in my left hip – or maybe it’s the Letrozole, which I restarted three weeks ago; that’s the aromatase inhibitor aka old-lady pill, meant to shut down my cancer-feeding estrogen – see earlier blog posts for more whinging on that subject.
[iv] Previously published as Five to Thrive. By Lise N. Alschuler, ND, FABNO; and Karolyn A. Gazella. Ten Speed Press, Berkeley, CA. © 2011, 2013.
Alder and I made a guitar with a Cheerios box, a little help from the internet and a dumpster dive.

Rosie's arrival was my birthday gift. She and Alder decorated my kosher-for-Passover flourless chocolate torte.

Ever creative, Rosie used the gutter to slide coins into the pond outside the library.

My wonderful niece Christina wore oatmeal on her face AND took care of Alder while Rosie and I sneaked off to Portland.

Big Wild Life (Does anyone else remember Anchorage's "brand" or is this another inside joke with myself? Anyway, it's Portland.)

Big Wild Life in a bowl. Moose chili with avocado salad. Avo salad: half an avocado, equal amount of tomato, onion, jalapeno, cilantro, lemon or lime juice and salt to taste. (Oh, the red dots are chili flakes -- totally optional.)



Sunday, April 13, 2014

Uncertainty



My pericarditis broke through yesterday, to use my cardiologist’s term. I noticed the subtle but unmistakable chest pain on inhalation, and didn’t need to see a doctor or even have my vitals checked to know what was going on. Pericarditis is inflammation of the pericardium, or sac around the heart. In its moderate form, it causes pain on inhalation; in its more severe form it can cause tamponade. This is when the pericardium is rigid or inflamed enough that it squeezes the heart, restricting the heart’s ability to pump. Consequently, blood pressure falls, and heart rate rises as the heart tries to compensate for reduced efficiency by pumping faster.

I first contracted pericarditis in February, when it landed me in the hospital for two extended-stay-deluxe visits. This is my fourth recurrence. I have become so familiar with the symptoms I can almost guess my blood pressure and heart rate.

So I’m starting the cycle over with high-dose steroids to beat back the symptoms, and then will try to wean off the loathsome drugs. I was down to 10 days of my last steroid tapering regimen, and had hoped I might squeak through without a recurrence. But as the on-call cardiologist today matter-of-factly said, I “failed taper.”

I don’t have much expectation that it will work this time, and am eagerly awaiting an appointment later this month with a rheumatologist who will, I hope, have some alternative ideas for beating the inflammation at the root of the problem. I don’t know if the steroids are making me moody and sleepless, but I’m sure they’re not helping! And that’s only the tip of the iceberg when it comes to problems with long-term corticosteroid dependence.

As for cancer, it’s hard to think of myself as done with treatment. This is partly because of the ongoing heart issue and my unresolved hormone issue. I also don’t feel like the cancer is fully eradicated. Perhaps someday I will, but at this point I am wary. It was shrunk with chemotherapy, visible traces were removed by surgery, and any lurkers were nuked with radiation. We will continue to try to starve any tenacious cancer cells with ten years of hormone therapy. But with recurrence rates so high, obviously in many cases there are some cancer cells that withstand the slash-burn-poison-starve assault; perhaps they will lie dormant forever, perhaps not.  

According to cancer researcher Dr. William Li, cancer is far more common than we may realize:
“Autopsy studies from people who died in car accidents have shown that about 40 percent of women between the ages of 40 and 50 actually have microscopic cancers in their breasts, about 50 percent of men in their 50s and 60s have microscopic prostate cancers, and virtually 100 percent of us, by the time we reach our 70s, will have microscopic cancers growing in our thyroid.[1]

It’s not so much a question of whether cancer cells are present as whether those cells will find an opportunity to flourish and grow. In my case, acute stress probably weakened my defenses and somehow created a pathway for the cancer to multiply.

This prevalence of what I’ll call quiet cancer is one of the reasons it is hard for me to believe, on a gut level, that my cancer is entirely gone. I’m not ready, and I may never be, to talk about cancer in the past tense: “I had cancer.” Maybe it’s like alcoholism, where you may be clean and sober for years but you know the possibility of relapse always exists, so you say: “I’m an alcoholic. I’ve been sober for 18 years.”

So I am disinclined to think of my cancer in black-and-white, here-then-gone, terms. A woman shared a succinct and forthright post along these lines in the stage 3 section of a breast cancer discussion board:

“Do you notice people asking about your health seem to have the idea that the doctor pronounces you cured or not at some point in treatment? I have the same conversations over and over-- people ask how my health is, I say I'm doing fine, meaning day to day I'm feeling pretty good. They often push further, asking about my follow-up schedule, or say something like ‘so are you in remission?’ or ‘so they got it all, right?’ or the dreaded, ‘so they caught it early, right?’

“I never know quite what to say.  On the one hand I'm angry at people's naivete and want to contradict the false narrative of early detection and happy survivor-ship. On the other, I don't want to educate them about the long term prognosis and become the object of pity and fear again.  Mostly I just don’t like being reminded of the uncertainty of the outcome. It was such a bitter pill to swallow in the first place.”

People want reassurance that we are ok, but the truth is, for many of us our prognosis is ambiguous. You can enter an array of data from your pathology report into a clinical calculator that will spit out the likelihood, in percentages, that your cancer will return within five and ten years, respectively.

Woe is she who discovers the clinical calculator.[2] My doctors and nurses warned me off it for a reason: in real life, outcomes vary wildly. Just as we don’t know exactly why certain people get cancer in the first place, we don’t know whose cancer will return, and when, or why.

The strongest among us take the uncertainty and translate it to a renewed commitment to live and love fully. I can’t say I’m there yet, but I’m working toward it. This poem a friend shared tonight helps pull me in the right direction:

Dust if you must
By Emma Jane Rae

Dust if you must, but wouldn’t it be better
To paint a picture or write a letter,
Bake a cake or plant a seed,
Ponder the difference between want and need?

Dust if you must, but there’s not much time,
With rivers to swim and mountains to climb.
Music to hear and books to read,
Friends to cherish and a life to lead.

Dust if you must, but the world’s out there,
With the sun in your eyes, the wind in your hair,
A flutter of snow, a shower of rain. This day will not come around again.

Bust if you must, but bear in mind,
Old age will come and it’s not kind.
And when you go – and go you must –
You, yourself, will make the dust.
 

[1] http://www.ted.com/talks/william_li
[2] Now that I’ve advised against it, I will tempt you with a link: http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/clinical-calculators/index.html

Alder's Lego school bus on elevated tracks.
On our Bainbridge deck.

And some snapshots from our trip to Juneau last week....
 
Oceans, mountains, boys and chickens at our friends' magical home. www.tidewatcherrental.com
Our one ski (half) day of the year! Love Eaglecrest. 
We finally got to visit our friend Marc's new cafe, Coppa. Alder got to help Marc make ice cream.



How Alaskans enjoy the beach.