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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Can I Get a Roadmap? Cancer Survivorship Care Plans Do Exist

Where’s my cancer GPS?

For those of us who have completed initial treatment for breast cancer, what to do next may be a big question without a ready answer. Often, it gets harder to answer that question the further we get from the date of our original diagnosis. We may get some kind of screening every year. We may be told we are still NED. We may still be taking some kind of hormone suppressors or we may have quit taking them. We may have managed to get on with life despite the continuing fear of recurrence or mets. And yet, we may very well still feel like utter excrement and not know what to do about it.

Some of us may continue to see one or more of our cancer doctors on a regular basis. Some of us may be followed mainly by our primary care doctors. But many of us have never discussed with them any sort of overall strategy for what, for lack of a better word, has come to be called survivorship. We may not even get asked about long-term collateral damage, and if we bring something up, we may get a shrug or a prescription for a lab test. But what we don’t get is a road map.

I was prompted to write this after reading a post written by my friend Eileen about how she’s been doing lately. Still plagued by fatigue, she describes how she is being followed mostly by her current primary care physician, who doesn’t seem to know how to help her and is not receptive to her suggestions.

What the ever-loving heck? Back in 2010, I wrote a few posts about the existence of survivorship care plans. The first post highlighted the publication of a book by the Institutes of Medicine called From Cancer Patient to Cancer Survivor: Lost in Transition. Yep. Pretty much says it all. Later that year, I followed up with another post that described in more detail the efforts of the Centers for Disease Control, which began in 2003 to formulate, with the help of several other organizations, a national action plan to develop and implement the use of cancer survivorship care plans. A pdf of a patient-centered brochure describing the plan may be found at this link.

2003?? So, what happened?

In 2011, The Oncologist published an article about how to maximize the benefits and effectiveness of these plans. The most obvious conclusion to be drawn from this piece was that the healthcare system was still figuring out how to do them in the first place. A few years later, the Journal of Cancer Survivorship published a study that assessed the status of the CDC’s national action plan. The organizations included in this assessment were the American Cancer Society; CancerCare; CDC, Division of Cancer Prevention and Control; Livestrong Foundation; and the National Coalition for Cancer Survivorship. Twenty-two people were interviewed for this assessment, a group comprised of organization directors, clinical supervisors, and staff who directly managed relevant activities. The study did not specifically mention the inclusion of physicians or oncologists, nor were any actual cancer survivors interviewed. Table 2 lists the priorities identified by the original action plan. They all sound good, but the study found that implementation was a lot more complicated. Overall, it seemed that most recommendations were put into place, but that there was a lot of room for improvement.

One feature of the action plan was the use of patient navigators, who may play a role during acute care as well as survivorship. One of my previous posts, written last year, discussed the availability and effectiveness of these navigators. In 2014, a study conducted by the University of Ottawa questioned the cost-effectiveness of the survivorship care plans used with breast cancer patients. The study found little difference between standard follow-up care and care provided according to a survivorship plan. Survivorship care plans were, in fact, found to be slightly more expensive, but the authors suggested that their cost-effectiveness might be improved by better identifying patient needs, using health information technology, and improving data collection. Another study was completed in 2015 at UCLA to look at the use of treatment summaries and survivorship care plans for underserved breast cancer patients at two public county hospitals. Results have not yet been published.

I feel more lost than ever.

Meanwhile, one of the original goals of the CDC’s action plan was for each of us to get a written survivorship care plan. I’m still waiting for mine. And I am still wondering whether our doctors even know how to write one. To that end, I unearthed a few resources to help our doctors help us.

The simplest one appears to be a template designed by the American Society of Clinical Oncologists (ASCO). The details, aimed at healthcare providers, are described here. A description geared toward patients can be found here, and recommendations specific to breast cancer patients are described here. The template itself is about two-and-a-half pages long, and I’ve included it as a downloadable pdf here. You could perhaps bring it with you to your next appointment with the doctor of your choice. You could probably even fill in a lot of it yourself.

And, naturally, there’s an app for this. JourneyForward provides a downloadable program which can be used by you or your doctor for building a survivorship care plan. The link to this software is here. Yes, I did download it, and, yes, I started filling it in. But to do a good job of it, I would have had to look up a bunch of crap I didn’t feel like looking at right now. Maybe later.

I hit the motherlode when I visited the website for the National Comprehensive Cancer Network. Never an organization to leave any stone unturned, NCCN provides an evidence-based tome for practitioners describing how to assess any and all cancer survivors and what elements to include in a survivorship care plan. If you thought ASCO’s two-and-a-half page template was long, the NCCN’s guidelines are a whopping 179 pages. A pdf of these guidelines can be found here. I suggest clicking on the link for the Survivorship Table of Contents on the upper right and going from there. It’s really quite impressive. The guidelines discuss the role of primary care doctors (page 98), and list the elements that should be included in a summary provided to cancer patients upon the completion of treatment (pages 98-99). These include:

  • a personalized treatment summary
  • information on possible late and long-term side effects
  • information on signs of recurrence
  • guidelines for follow-up care
  • identification of providers
  • recommendations for healthy living
  • identification of supportive care resources

Looks perfectly splendid, doesn’t it? The chances of getting all this from our doctors? Not so much. However, as long as we cancer patients can read, at least we can use these guidelines as tools to help us look after ourselves. And hope our doctors will want to go along for the ride.

In the meantime, I’d love to hear from you about your experience with this. Did your doctors provide any sort of plan or summary of your treatment? Who do you see now for follow-up care? How is it going? Are you getting what you need? Me, I could use a winning lottery ticket. It wouldn’t fix everything, but it would surely help.

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