Willpower versus Fatigue: Not a Fair Fight

It’s that time of year again. Somewhere about now, eight years ago, I was told I had breast cancer. The good news is that I don’t remember the exact day, and I’m glad like that I have forgotten that particular detail. I do know it was in July, but I refuse to look it up. I’m still here, and that’s what matters, so screw the damned date.

I do remember that the whole rollercoaster ride started with my annual physical, which was mostly uneventful. My only new complaints that year were that I had been feeling mysteriously and increasingly more tired during the previous months, to the point where I was starting to cut back on my considerable non-work activities, and I had developed tinnitus. Otherwise, I was peachy. I left the visit, armed with a lab slip for blood tests, a referral for a consult with an ear doctor, and a slip for my annual screening mammogram. My blood tests were all normal, my hearing was normal, and I learned how to ignore the tinnitus. The mammogram, of course, was another story.

Around the time of last year’s physical, in yet another attempt to reduce my ongoing fatigue, I stopped consuming pretty much all processed sugar and desserts. So, no daily cookies or ice cream or muffins or cake, etc. to get me through my work day when my energy flagged. Still ate a little dark chocolate, a lot of fruit, and once in a great while, a real dessert. As I’d hoped, it did smooth out the hills and valleys of my energy level on my work days. What I did not expect, but which was confirmed at this year’s annual physical, was that it also caused me to lose twelve pounds. I’ve been able to fit into all my old clothes again. It’s been like going on a massive shopping spree without spending money. Christmas in July!

It also had an apparently significant effect on my vital signs. My blood pressure has been surprisingly good for several years now, but at this year’s physical, it was spectacular, as was my heart rate. If you didn’t know better, you’d think I was a bleeping marathon runner, which I am decidedly not. I was also not any shorter, which means my post-menopausal spine is not collapsing with osteoporosis. And there were no palpable lumps in my breasts. I have to wait before I can get my next now-annual-again mammogram, because my insurance won’t pay for it unless it’s a year and a day since my last one. Stupid, but there it is. So, that’s not until September.

Aside from waiting for the mammogram, basically everything is just dandy. Except that I still struggle with fatigue. I don’t know how it is possible to be so apparently healthy and still be plagued by fatigue, but I am. My doctor orders extensive blood tests every year, and every year, they come back normal, with nothing in them to account for the big F. I expect that this year’s labs will be the same. As Churchill once said, about a very different subject, “it is a riddle wrapped in a mystery inside an enigma.”

If I thought I’d been suspiciously tired before being diagnosed, it was nothing compared to what happened after I began treatment. I remember the day that the serious, body-slamming, unrelieved fatigue started. It was right after my seventh radiation treatment, when I drove home, got out of my car, and almost collapsed in the driveway. After that, it took up permanent residence. Despite that vivid memory, sometimes I can’t remember if it’s worse or better than it used to be. The day before this year’s physical, I filled out a Fatigue Symptom Inventory, a tool to help rate and track cancer related fatigue (and other kinds), as I’ve done one or more times a year to see how I’m doing. You score most items on a zero to ten basis. If your average score for each item, except for items 12 and 14, is a 4 or more, then fatigue is having a significant impact on your life. This year’s average for those items was 5.75, better than the early years, but no better than most of them. So, I’m not daft at least, and knowing my stubborn propensity to underplay things, I probably scored a lot of the inventory items on the low-ish side.

Sometimes I wonder if I’m lacking in willpower. Acccording to the American Psychological Association, “willpower is the ability to resist short-term temptations in order to meet long-term goals.” Okay. I stopped eating sugar and lost twelve pounds. I just completed a 30-day plank challenge and got up to holding a high plank for two minutes. I’ve put 10% of my income into a retirement account for years now. I’m really good at avoiding the news or scrolling past upsetting posts on Facebook. How much willpower am I supposed to have? Seems to me I’m using up more than my quota just overcoming fatigue so I can function at all. The APA also says that willpower is “A limited resource capable of being depleted.” Great.

I’ve tried every trick I can think of over the years to ward off the fatigue beast. I took drugs for a number of years, which didn’t fix it, but did help me stay upright so I could eventually try other tricks. One of the first drugs I took was Wellbutrin, or bupropion, which is a stimulating antidepressant. It was recommended by the doctor in charge of the cancer related fatigue [CRF] study I participated in several years ago as one of a handful of medication options. Cancer.gov, in its fatigue section, cites a small study whose preliminary results suggest that “the sustained-release (SR) form of bupropion has potential as an effective therapeutic agent for treating CRF with or without comorbid depressive symptoms.” I’m not depressed these days, and I haven’t used any of my fatigue-fighting drugs for a few years. But my doctor and I decided the other day that it might be helpful to try wellbutrin again. It helped me before, when I was in much worse shape than I am now. So, we’ll see. I’ll let you know.

The whole thing is so bloody tedious. I’ve had a very hard time accepting the long-term collateral damage of breast cancer treatment, of which fatigue is only a part, albeit the part that has had the largest effect on my life. I’ve berated myself more times than I care to think for failing to accept how much my life has changed. But you know what? The hell with all that. The hell with acceptance. I don’t like battle metaphors and I don’t like being referred to as a ‘cancer warrior’ for all sorts of reasons. But I’ll be damned if I’m going to stop fighting fatigue, and instead keep fighting with myself about accepting it. Screw that. I think I have demonstrated beyond a doubt that I have plenty of goddamned willpower. That’s not the point, evidently. The point is that it’s an unfair fight. But I’m at least as stubborn as the fatigue is, and I’m going to keep kicking its miserable ass, even when it knocks me on mine. So there. Insert your favorite expletives.

Cancer.gov PDQ on Cancer Related Fatigue

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Jody Schoger — Her Words & Her Example

It’s been just over a month since my friend Jody died on May 18, 2016 of metastatic breast cancer. What would have been her 62nd birthday is coming up at the end of this week. Like many of us who were privileged to know her, I am still reeling from her loss.

It still hurts too much to talk at any length about how much our friendship meant to me. The photo I have posted here is from a conference we attended together in 2011. What you don’t see in the photo is me, sitting just to her right, delighted after months of a flourishing virtual friendship to have met her in person and indeed to have shared a hotel room with her at this conference. My heart aches and my eyes fill with tears just typing these words. I have to stop for a few minutes now to weep, again.

What I want to say is that, if you are looking for an example of how to be in this world, you need look no further than to follow Jody’s example. No one occupied the community of breast cancer awareness and advocacy with more genuine kindness, compassion, and clarity of vision than Jody. She offered empathy and support to all who needed it, at any and every stage of breast cancer and treatment, without judgment. She accepted everyone with an open heart, wherever they were at in dealing with their experience. When she shared information, you could be certain it was well-researched and based on scientific evidence. She was never shrill. She believed in research. She did not countenance the ubiquity of pink merchandising or the marketing of breast cancer as some kind of happy pink sorority. Nor did she waste time pounding on doors that were closed to genuine awareness. She did not suffer fools, but welcomed open minds and hearts. She believed that knowledge is power.

I also want to say that, however deeply any of us in the breast cancer community mourns Jody, her sister Megan, her husband Steve, her extended family, and her friends in the Texas community where she lived, miss her in ways we cannot fathom. So, remember them, too, when you think of Jody.

To honor Jody’s memory, we can do no better than to try to act like her, each in our own small way.

I want to share some of her words, from a status update she wrote on Facebook, off the top of her head, for #MetsMonday in March of 2015:

“My thoughts on #MetsMonday. We need:

1) more funding for intelligent, targeted research that builds on what already exists. Not every research institution needs to re-invent the wheel.

2) more cooperative studies of metastatic disease with the leading cancer institutuions

3) real data management where new cases of metastatic [breast cancer] are documented. Most figures existing now are extrapolations from SEER data. So after all this time of building awareness there is no accurate snapshot on metastatic illness.

4) better coordination of existing social services for women without means: they are getting lost between the cracks! There are too many single mothers with metastatic illness who can barely make ends meet.

5) a way of guaranteeing that every woman diagnosed with metastatic disease understands what clinical trials are available to her within a (25, 50, 100- etc.) mile radius BEFORE she initiates treatment

6) a supportive/palliative care consult with the newly diagnosed woman/man with mets to establish a baseline for quality of life measures, what supports might be necessary, and get those coordinated asap

7) a yearly report (the newly established Metastatic Breast Cancer Alliance??) that summarizes not only the year’s best research in ER/PR+ disease, TNBC, IBC, HER2+ but also what is happening in immunotherapy and targeted therapy clinical trials. Yes, it’s a big job and no, NO ONE is doing this. Mets patients pick up their information piecemeal….. a little bit from here, a little bit from there.

8) a continued educational and outreach effort that raises REALISTIC awareness about breast cancer and the nature of this recurrent, recurring disease. This is especially true for ER/PR+ women originally diagnosed with cancer in their lymph nodes at the time of their lumpectomy or mastectomy. This fact is not widely circulated.

9) Spit on the memes and schemes. Facebook is littered with the “latest and greatest” cure for metastatic breast cancer. If aspargus, baking soda, vit E, vit C. etc were all so great 40,000 women would not be dying every year.

Bottom line: don’t pass on trashy, stupid sounding information about cancer. Too many people believe this idiocy.

10) Metastatic breast cancer is a complex and misunderstood disease. Men and women can “look” good yet still be walking around with a disease that kills. And that leads me to my last point about metastatic disease:

Be careful about where you donate. Find out if the organization your are automatically donating to actually funds research into metastatic treatment. We have raised enough money for awareness about primary disease. People are more than aware of breast cancer…less aware that this disease recurs in approximately one third of all cases and that metastatic disease is incurable.”

Amen, Jody.

A few links:
Jody’s blog, Women with Cancer
Jody’s obit, written by her family.
Tribute to Jody from BCSM, the online breast cancer social media community she helped found on Twitter, Good Night, Jody
Liz Szabo’s op-ed tribute in USA Today, Voices
Gayle Sulik’s remembrance for the Breast Cancer Consortium, A few words about Jody Schoger

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Let’s Not Play Games

Yesterday, June 4, 2016, was National Hug Your Cat Day. As it happens, I hug my cat everyday, and, I’m delighted to say, she hugs me back. So, I don’t really need to be reminded to hug my cat, but what the heck? I can get behind the sentiment.

Today, June 5, 2016, is National Cancer Survivors Day. I got invited to a dinner for cancer survivors that was organized by my local hospital/healthcare system, which also happens to be my employer. Every day that I am still, as far as I know, NED, is a day I’m grateful for. But like many of us, I have trouble with the word ‘survivor.’ Maybe it’s me, but on this day, I can’t help remembering all the people I have known who did not survive cancer. I’ve survived my crazy childhood, bad relationships, several hurricanes, a few auto accidents, the infamously snowy winter of 2015 here in New England, the sorrow of burying both of my parents, and a whole lot of other shit. Those events are behind me. Breast cancer, which can recur and metastasize years after initial diagnosis, is not. So, no, I am not attending a dinner that, at best, will leave me feeling uncomfortably patronized and will not begin to acknowledge my daily reality or the reality of my friends and patients who are enduring metastatic cancer every day.

Yesterday, one of my friends, who has also had breast cancer, posted the following on Facebook: “I know nobody will read my status but sometimes when I’m bored, I get wrapped up in my tutu, put a giant horn on my head, lather sparkles all over myself and prance around the kitchen pretending I’m a magical unicorn!” I laughed. I figured she was making fun of those idiotic posts that demand that the reader leave a one-word response and then cut-and-paste the same status to their own timelines. So, I left a Ha-ha emoji and suggested that she post a photo. Later, I got this message from her: “Dear fellow unicorn, I am really sorry I have lost at the unicorn game and now so have you! Anyone who likes or comments on my post has to continue the game for Breast Cancer Awareness (unless you have lost your sense of humor). You now have to post the same thing on your status. Be a good sport and keep it going….you have to send this message to anyone who comments or likes on your post.”

The first thing I thought was, No way in hell. I take that back. The first thing I thought was, What the ever-loving heck?? Then I was surprised that this person, an ordinarily with-it, intelligent person who also objects to all the fake pink BS that is breast cancer awareness, a person of whom I am fond, would even participate in this, and not just ignore the person who started it. She did end her message by saying, “You are going to hate this. Sorry.” Well, she was right about that. I did and do hate it. We had a little cordial back-and-forth about it, and she apologized again. But I still do not understand why she posted it in the first place. Maybe I have, indeed, lost my sense of humor. One of my dearest friends, who died of metastatic breast cancer, was buried last weekend. I’m still trying to come to terms with that.

About five years ago, I wrote another post about these so-called games [The Pink Elephant]. My sentiments about them remain unchanged. I hate blackmail, I hate social media bullying, and I fail to see what is amusing about these games, much less how their originators can suppose for one nanosecond that they advance anything but their embarrassingly prepubescent lack of intelligence. If anyone can explain to me how they contribute to breast cancer awareness, please leave me a comment. Which means I may be condemning myself to getting no comments here, because I doubt very much that anyone can explain this to my satisfaction.

Yesterday, there was also a full moon. Maybe that’s it. All I know is that I’m not in the mood, today or any day, for errant lunacy. I think I’ll go hug my cat.

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“My Heart is Not Any Age:” Random Thoughts on Growing Older

Me, about a zillion years ago.

“My heart is not any age. It is a baby, an elder, a dog, a cat, divine.”

— Anne Lamott, ‘This is the last Saturday of my fifties’

Two years ago, thanks to a friend, I stumbled on the fact that writer Anne Lamott and I were born on the same day. We were both about to turn sixty. Since I like her writing, and her attitude, and since I share a lot of the same attitude, I’ve found it quite helpful to share my birthday with her. If I’m stuck for thoughts about life, I can look up some of hers, and find that we’ve often reached the same conclusions.

When I was trying to come up with a title for this post that summed up how I feel about being sixty-two, I remembered the above quote. People sometimes say that the key to growing older is to be young at heart, but I find that notion inadequate. Sometimes I feel young at heart, like when I’m laughing with friends, or singing to my cat, or drawing for hours on end, or marveling at the wonders of the universe. But sometimes, I need to be old at heart, old in wisdom, old in lessons learned, old in kindness and compassion, old in perspective. I distinctly remember feeling old at heart when I was seven, and facing another example of my mother’s mental illness. Feeling old enough not to take her craziness personally kept me sane.

I was sixteen around the time the above photo was taken. It was not a sweet sixteen. I was struggling, like every teenager, with that roiling stew of hormones, self-consciousness, and insecurity. But I also realized I was drowning in depression, and my friends were worried about me. With good reason. My parents were fighting nearly all the time, hurling threats about leaving each other as soon as I was out of high school. If I’d had anywhere to go, I might have left home there and then, just to call their bluff. I’d also fallen deeply in love in that mind/body/soul way for the first time, and then been abandoned after several months without explanation. I was shattered. But I was still resourceful. I found out about a health clinic in Harvard Square in Cambridge, at the other end of the train line from where I lived, that offered free counseling services. I decided to get some.

Among the mostly young, mostly nervous souls in the waiting room was a friendly, suspiciously cheerful young man who struck up a conversation. He was tall, blond, long-haired and buff, kind of rock-star hunky, but he didn’t act like he thought he was god’s gift. He was just a sweet dude who, I’m pretty sure, was high on weed, but was nonetheless engaging and unassuming. I think his name was Kevin. We shot the shit about music and life and what-all until he was called in for his appointment. A few minutes later, I was called in for mine. When the counselor sat me down and asked me what was wrong, I cried wordlessly for about ten minutes straight. That was my baptism in the arduous, cathartic ways of psychotherapy. When my fifty-minute visit was done, and we’d made another appointment, I felt wrung out but lighter. And a little less alone.

As I left the clinic and walked toward the subway station, Kevin was coming toward me from the opposite direction. “Hey!” he said, raising his arms in greeting like I was an old friend. “Hey, yourself!” I said, smiling. Before we could, presumably, resume our previous conversation, he caught me up in his arms, bent me over backwards, and laid a long, passionate, enthusiastic kiss on me. A serious lip-locker. A literal traffic-stopper. Even my toes tingled. Drivers honked their horns. Pedestrians applauded. My life became a scene from a movie. When Kevin was finished, he righted me, told me to have a fantastic day, and strolled away. I stood there, breathless, not sure whether I should run as fast as I could to the subway or turn around and go after him. I like to think wisdom prevailed, and I decided instead to get myself a chocolate-chip ice cream cone at a nearby Brigham’s. I sat in the sun while I ate it, smiling at life’s mysteries. I never saw Kevin again, but that was okay. I didn’t need to.

“You wandered down the lane and far away
Leaving me a song that will not die.”

from “Stardust,” lyrics by Mitchell Parish, song by Hoagy Carmichael

A lot of my life has been like that day, rife with heartache and struggle, but punctuated by some moment of astounding balm and unexpected clarity. Recently, I was treating a young woman who was recovering from a complicated orthopedic surgery. We had a lot in common. We both worked in science-based professions, but liked to write and make art. One day, she was talking about the pressure she felt since turning thirty to figure out what to do next in her life. She loved her job, for which she got paid to write, and her employers were kind and accommodating. But she felt unsatisfied. Like me, she had an undergrad degree in the humanities, but wondered if she should she go back to school and get a science degree. But in what? She loved art, too, but would it make sense to get an art degree and not be able to get a job in it? She had a boyfriend she loved, but didn’t know how she felt about the whole marriage/kids thing. She also suspected that recovering from surgery left her with too much time to think and that perhaps she was driving herself crazy, something she was only too good at doing. Still, she worried that she had wasted too much time just falling into things without a clear game plan.

I told her how I’d felt the same way at her age, how I think that our thirties are like that, a decade when we feel pressure to figure out this adulthood thing once and for all, and get a move on. Then I told her how I felt like I’d always been a late bloomer, but that it turned out to be a good thing in the long run. I told her how I’d spent my twenties, trying on and discarding several identities and potential career options, from rock star to painter to poet to magazine editor to would-be academic. I told her how I’d ended up deciding to go to grad school to become a physical therapist, and didn’t finish my degree until I was forty. I told her how, at fifty, I finally spent some serious time making art, got into a lot of juried art shows, and won awards for my photography. I told her about starting a blog, teaching myself to write code, breaking into Photoshop’s mysterious depths and using it to create a few infamous memes, and finally landing a side gig getting paid to write now and then for a healthcare website.

“Holy crap!” she said. “How old are you?”

“I’m going to be sixty-two in a few weeks.”

“Shut UP!!” she said. “First of all, you so don’t look it. Or act like it. Wow. You don’t know how much better this makes me feel. I’ve got all kinds of time, don’t I?”

A little stardust.

Being Silver

Today, on our birthday, Anne Lamott re-posted something she’d shared on Facebook on last year’s birthday:

“Everyone is screwed up, broken, clingy, and scared, even the people who seem to have it more or less together. They are much more like you than you would believe. So try not to compare your insides to their outsides.”

Amen to that. My insides and outsides still bear the marks that cancer has indelibly left behind. Last year, right before my annual physical, I decided to try yet another strategy to see if I could kick more of this beast I’ve been living with ever since treatment, the beast known as fatigue, a little closer to the curb. Trust me — I’ve tried everything in the last seven-and-a-half years. This time, I decided to try to eliminate most of the sugar I was consuming. Not that I consumed a lot, but I’d been relying a bit too much on a mid-morning muffin to give me enough of a rush to get through the rest of my patient visits, and a post-work cookie or three to get me through my patient notes. I wondered if I’d feel better if I stopped spiking my energy level with sugar, only to have it plummet later on. So, I stopped eating desserts — muffins, ice cream, cake, pie, Dare Chocolate Crème cookies. I still ate a little dark chocolate every day, but none of that other stuff, except as a rare treat. Long story short, since last June, I’ve lost that last ten pounds of post-cancer-treatment weight-gain I never thought I’d get rid of. And yes, my energy has evened out. I still need naps, and I still need my days off to recuperate from my job, but I feel much more like my old self.

I also decided to start letting my silver hair grow out. I took a long, hard look at my roots, which now appear to be about half silver, enough finally to make a statement. So, at last week’s appointment, my splendid hairdresser stripped the color from a massive pile of strands, toned them silver, and left my roots to do what they will. Part of me wishes I could have Emmy Lou Harris’s hair right away, and be all silver. But I realize this is a long-term project. A lot like life.

There’s a lesson in all this about growing into myself — reclaiming some of my old self, embracing my present self, preparing for my future self. One of my best friends called me last night to talk to me “while you’re still sixty-one.” I told her I was looking forward to being sixty-two. She asked me why. I told her I didn’t know really, but I just wanted to be myself, whoever that is. I told her how wonderful and symbolic it was to be able to fit into some of my old, favorite clothes again. I told her about that thirtyish young woman I’d visited, and how I’d described to her that my being a late bloomer had allowed me to do all kinds of amazing things long after being thirty. I told her how she’d said I’d helped her feel better about herself, and how I realized that telling her my own story made me feel better about myself, too.

“Who knows what I’ll do next?” I said to my friend. “But for now, I just want to be fabulous at being sixty-two.”

That’s enough. That’s plenty.

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