Remembering Shelli

Two years ago today, my friend Shelli, who blogged at the Dirty Pink Underbelly, died of metastatic breast cancer. Four days after her death, I started writing this post. And couldn’t quite finish it. It wasn’t any easier to finish it today than it was then.


[February 17, 2014] This entire thing about making friends via social media is a little dangerous. Especially in the cancer club. What happens when you really bond with someone? What if they’re having a truly execrable day and you want to rush over and do something for them? Except that they live in Timbuktu, and you don’t, and the only chance you have of providing tangible help is if Doctor Who lands his TARDIS in your driveway and whisks you off. Or if Harry Potter drops in and teaches you how to disapparate. What if they have metastatic breast cancer? What if they have to go to the hospital — again? Sure, you can text and message and email till your fingers fall off. But all the texted hugs in the world feel inadequate in such a circumstance. And yet, bless them, they still tell you that it matters that you’re there, waaaay over there, far away in cyberspace, offering your understanding and affection in bits and bytes.

Such was the nature of my friendship with Shelli. It started off, like many of my closest cyber-friendships have, with us stumbling upon each other, around September of 2012, as we were both girding our loins to endure yet another Pinktober.

I believe we found each other’s blogs, then our blog Facebook pages, and then became friends on Facebook, all about the same time. She told me about her other Facebook page, Cancer Pissed Me Off Today. I told her about helping METAvivor launch their first blog. We conversed a lot via private message. Our first long conversation was about bone mets. It was a conversation that never really ended, as Shelli endured pain, hot spots, and pathological fractures, plus the radiation, chemo, pain meds, and vertebroplasties all aimed at controlling them.

The other thing we talked about a lot was the Pink Peril and our frustration at its pernicious persistence. Last September, as we braced ourselves for our second Pinktober as friends, she said, “I get so frustrated every year when noobs don’t know, don’t get, and keep spouting the pink froth. It feels like swimming upstream. I even have gotten in arguments with others with mets who haven’t been de-pinked, and think that the way to raise awareness is to blend in and be the same as the pink. I feel like a meanie crankie bitch pants.”

Eventually, we discovered that we shared an abiding cyberlove for Carolyn Frayn, who also had metastatic breast cancer. That led to some hilarious three-way communication, knee-deep in noir humor and creative cussing. Carolyn and I were particularly fond of one of Shelli’s posts, Any One of Us Could Go at Any Time, which utterly and humorously destroys the “anyone could get hit by a bus tomorrow” thing, which foolish people — okay, thoughtless jackasses — all too often utter to people with metastatic cancer.

In the interest of full disclosure, let me just provide a little background. As of my last checkups, I do not have metastatic breast cancer. I was diagnosed with widespread, ER/PR+, apparently high-grade DCIS in 2008. I endured the full-freight slash/burn/poison routine, albeit the poison coming in the form of oral anti-estrogen drugs. I did not elect to have reconstruction. I did manage to find and exploit the humor of having a prosthesis that looks like a chicken cutlet. I feel incredibly lucky to have become friends with Shelli and Carolyn. And Rachel. And several other remarkable women who do have metastatic breast cancer. It was Rachel who first coined the phrase “fearless friends,” describing us early-stagers who ‘get it,’ who are informed about metastatic breast cancer, and who are just as appalled that its death toll continues, who have no illusions about its potential to strike anyone. Still, there is a part of me that is humbled and amazed that any of these women would ever want to have me as a friend. Sure, I’m a clinician, and one of my first clinical specialties as a physical therapist was oncology rehab. So, yes, I get it and I got it a long time ago. I like to think, therefore, that of necessity and desire, I’ve developed perhaps more empathy and compassion than the average person. But still, what do I know about living with an expiration date, as Carolyn once put it? So, I feel humbled and grateful that any of these women would regard me as a friend, and not just a casual friend, but someone they could confide in about all the shit they’ve had to endure.

Carolyn used to tell me that she wondered why I would want her as a friend. She once told me that she and Shelli opined that I might be crazy for wanting to be friends with people who were likely to die, horribly, before I did. That stopped me in my tracks for a moment. But then, of course, I reminded her that I could get hit by a bus tomorrow, and we both laughed.

On Friday, February 14, 2014, I was schlepping through another crazy workday. I had to drive many more miles than usual to see some of my homecare patients. I tried to schedule them by location, so I could see the distant ones in the morning, and the closer ones in the afternoon. It wasn’t working out. I was a little frustrated, but not overly. That’s life in homecare, after all. I was more frustrated by worry. For weeks, I had been worried about Shelli, who had been in an Arizona nursing home rehab center for several weeks, after being hospitalized for treatment of more bone pain and pathological fractures. Since being transferred to rehab, mets had evidently spread to her meninges, which are the membranes that cover the brain and spinal cord. She had not been fully conscious for days. She was in horrible pain. It was hard to get accurate, current information about her condition or about what was being done for her. For several days, I had been furiously messaging and emailing a couple of mutual friends, one of whom was there in Arizona and visiting her as often as she could. The other was Carolyn.

On Friday morning, I did not have time before I hit the road to check my emails or Facebook to find out how Shelli was. But I had this feeling. I tried to get online with my cellphone during short breaks between patients, but it seemed that everywhere I drove that day, I ended up in cellphone death valley. Finally, I texted Carolyn, and she texted me back: Shelli had died sometime the night before. Somehow I did manage to be moderately useful to the rest of my patients and to drive home safely.

The second last conversation I had with Shelli started with her congratulating me for using a comical euphemism in a comment on her timeline about her progressing bone mets, a post which would be seen by certain members of her family who shunned expletives. This was in late October, 2013. She applauded me for managing to avoid saying ‘fuck,’ even though she knew that’s what I wanted to say, and which I did say in a private message, along with pledging to work on my “Expelliarmus Cancer” spell. She wrote back, “Expelliarmus Cancer! LOL! Capital idea! I giggled out loud! Thank you for your treasured support. Thank you for being cognizant of when present company would really make dropping the f-bomb uncomfortable.”

Our final conversation occurred in the last days of December, 2013, when her bone pain was becoming unendurable, and the treatment wasn’t much better. “Not sure what I’m doing here,” she said, referring to her hospitalization, “other than that I couldn’t walk and kept winding up on the floor.”

“Wish I were there to help you up. xoxo,” I typed back.

“I wish you could fix everything. xoxo,” she said.

“Me, too,” I said.

Shelli

[February 13, 2016] Yesterday, as it happens, I read a Facebook post written by another woman with metastatic breast cancer, disgusted after she was told by a breast surgeon that, “Well, I may step off a curb and get hit by a bus…” In my comment, I left the link to Shelli’s hit-by-a-bus post. As of this moment, her link was liked by seven other women. It doesn’t fix everything, but it helps. And I think Shelli would be pleased.

pixelstats trackingpixel
Share

Picture This

New Horizons

Many of you know that I’ve started writing articles now and then for Healthline. It was flattering to be asked to write for them, and it’s even nicer that my editor liked my suggestion that I write as a physical therapist who has been a breast cancer patient, who often treats cancer patients, and can thus offer clinical advice.

It’s been interesting, to say the least, to be on this side of the editing process, after years of editing myself and others. Now I have to comply with a lengthy list of submission guidelines and rules about what kind of references and links I’m allowed to use. Years ago, I helped edit a magazine, so I know what it’s like to deal with writers who submit appalling copy and are not receptive to editorial suggestions. With all that in mind, I’ve tried and generally succeeded in sending my editor decent copy, and so far, he’s been appreciative, and his edits have been few and apt.

Back in November of 2015, I submitted a lengthy piece about arm and shoulder pain with breast cancer. It included a section with exercise advice and descriptions. My editor suggested breaking it into two articles, one with the clinical explanation of why we develop arm and shoulder pain during and after treatment, and the other with the exercises themselves. I agreed. We both thought it would be helpful to include pictures or illustrations. Since we couldn’t use pictures from someone else’s website because of copyright restrictions, he said he would see if Healthline could arrange for some.

Whoops

Meanwhile, the clinical article was published, while work continued on the exercise article. A few weeks later, my editor emailed me some exercise photos that were taken by one of Healthline’s freelance photographers. As photos go, they were okay. The photographer and the model both got the poses right from my descriptions. But they were wrong for my article. They showed a perky young woman of about 20, glowing with health, dressed in a tight pink spandex camisole, her long hair perfectly coifed. She was photographed in a glitzy health club, against a backdrop of barbells and weight-training equipment. I was flabbergasted. It took me a day or two to get my shock under control, and write, with some trepidation, what I hoped was a diplomatic email to my editor, pointing out that he might want to rethink them. My exercises, I told him, were aimed at people, mostly women, who had just had breast surgery, who might have lymphedema as well, who were mostly not 20 years old, who were sick and possibly facing chemotherapy and radiation, and who needed some gentle exercises they could do at home. I didn’t hear back from him, which felt a little ominous, and then the holiday season arrived, and I had other things to think about.

Stick Figures

After the first of the year, I finally got an email from my editor suggesting a few new topics for articles. My unpublished exercise article, however, was not mentioned. I realized I couldn’t start another article until the exercise piece was resolved one way or another.

As a physical therapist, I’ve handed out hundreds, possibly thousands, of home exercise programs in my career. If you’ve ever had rehab, you’ve probably received them. You know what they’re usually like. Sometimes, I scribble verbal descriptions only. Often, I throw in a few stick figures. Sometimes, I have time to print out pre-made programs with illustrations showing age-neutral, nondescript people. In the past decade or so, software and websites for rehab therapists have endeavored to include illustrations showing people of all ages and genders, so that we can target our handouts more closely to the patients who will be following them.

Theraband Scapular Exercise

Since Healthline needed illustrations they could own, I sat myself down, opened Illustrator, and decided to draw them some. I drew one that went with one of the exercises in my still-unpublished article. Then I emailed my editor, attached the drawing, asked if we might try to get the thing online at last, and offered to do the drawings myself. He wrote back to say that he couldn’t assign any more freelance art projects right now, but he might be able to contract me for illustrations in a few months. He agreed with me that he was disappointed that the photographs didn’t conform to his suggestions about setting and attire. Meanwhile, he looked forward to a draft for my next article. He didn’t say anything about when or if the exercise article would get posted.

Two mornings later, I checked Facebook before leaving for work, and lo and behold, my friend Nancy, of Nancy’s Point, had posted a link to Healthline for my exercise article. They had decided to publish my explanation and descriptions, sans pictures. At last!

Whew

On the whole, this freelance writing gig continues to be full of mostly pleasant surprises, although I will admit that I am often a bit mystified about how and when decisions get made. But I’m grateful to my editor, and to Healthline, for going the distance with me on this. They say that every picture is worth a thousand words. But sometimes, words alone are all you need. And at least I managed to spare us all from being excruciatingly represented by a happy, pink-clad model who looked like she’d probably never suffered anything worse than a hangnail. Although I probably shouldn’t make assumptions, because too many of us have had some fool tell us, “But you don’t look sick!” You never know. In any case, in the future, you may see this drawing on the left, or perhaps other illustrations drawn by yours truly, accompanying another article. Or not. Seems appropriate that the first one I drew was a shrug.

pixelstats trackingpixel
Share

Grief and Moonshots

If you have any friends in the breast cancer cyber-community, it cannot have escaped your notice that we have lost too many of them lately. One of the latest is Holley Kitchen. She posted a simple but eloquent homemade video on YouTube on June 4, 2015. Like a lightning bolt, it shot some much-needed clarity into the public consciousness about the reality of metastatic breast cancer. As of August, 2015, when Holley spoke at a meeting of the American Cancer Society, she estimated that her video had been viewed by 50 million people. If you haven’t seen it or want to see it again, here it is. I don’t know about anyone else, but it still makes me weep.

Yesterday, it was announced on Holley’s Facebook page that she had died. She was, sadly, only one of several folks I’ve known or known about who have died of metastatic breast cancer in recent months. 2015 was a tough year, and 2016 hasn’t started out any better. Every week, it seems, I will see a birthday notice on my Facebook timeline about a friend who has died of metastatic breast cancer. Just today, Marie wrote about this heart-stopping experience on her blog. When I tell you that I have lost count of how many times this has happened to me, it is not because I’m a thoughtless, forgetful git. It’s because too many people I know have died of or are living with metastatic cancer.

“Don’t mind if I fall apart. There’s more room in a broken heart.” ~ Carly Simon

In May of 2015, US Vice President Joe Biden lost his son to brain cancer. Last night, during his State of the Union address, President Obama announced a plan to intensify research into cancer. Calling it a ‘moonshot,’ he said that VP Biden would head up this initiative. Recognizing that cancer is not one disease, but many, the Washington Post reports that this project will in fact be comprised of many initiatives, some already underway. Indeed, many cancer research advocates have already met with Joe Biden’s staff, including Dr. Wagle of the MBCProject. Biden himself has set up a page for the Cancer Moonshot, outlining his plan and inviting comments.

While many in and around Congress have stated that cancer research is one subject about which there is true bipartisanship, forgive me if I’m feeling skeptical. In the past few years, Congressional wrangling about the budget has resulted in funding cuts that have affected the National Institutes of Health, curtailed opportunities for newly-minted post-doc candidates, even forcing some of them to consider a different career path, and forced the National Cancer Institute to change how it organizes clinical trials. And we’ve all heard ad nauseam about Congress cutting off funding to Planned Parenthood, which would have gone not to abortion services, but to other health services like cancer screenings. Meanwhile, several legislators, like Ted Cruz of Texas, who are science deniers, serve on and even head up important committees that have oversight for scientific research.

Despite all that, or because of it, if you feel inclined to do some lobbying or letter-writing, good luck figuring out who to contact. I just visited the Congress.gov page that lists all the House and Senate committees, did a little searching about ‘health research’ and ‘cancer research,’ roamed around the Appropriations committees of both houses, as well as a few other likely suspects, and groaned. There are few straight paths through the labyrinth of committees and subcommittees to the people who actually decide who funds what. Back in October, 2015, Beth Caldwell zeroed in on the Senate’s Health, Education, Labor and Pensions Committee, then working on legislation about cancer research. She met with staffers, and posted a call for action to contact legislators about improving research and statistical tracking for metastatic breast cancer.

Image from 1902 film “A Trip to the Moon”

I can’t say if any of this soothes my battered heart. Honestly, I’m still catching my breath after Carolyn’s recent death. Her birthday was this past Sunday, when her family held a memorial gathering for her. I couldn’t be there, but I did send METAvivor a contribution in her memory. No matter what I do, I think I’ve shed some tears every day, for her and for others, during the past month. Sometimes, doing something, anything, can mitigate the helpless rage that often follows grief. Sometimes not. At the moment, the person at the center of potential legislative and funding action seems to be Joe Biden himself. Maybe tweeting him, commenting on his Moonshot Page, or at least keeping up with him on his official page won’t bring back Carolyn or Holley or anyone else, but I’d like to hope that eventually it will spare someone a little future heartache.

In the meantime, I put one foot in front of the other, a little numb, a lot sad, and try to remember to tell my friends that I love them.


pixelstats trackingpixel
Share

Remembering Carolyn

Carolyn, the Art of Breast Cancer

I’d be the first to admit that 2015 was a shitastic year. Every damned week, sometimes every damned day, there seemed to be a news headline or three which served to highlight how batshit crazy, fearful, and murderous we humans can be. And that was when we in the Northeastern U.S. weren’t over our ears in snow, collapsed roofs, and power failures. Sometimes, the only way I hung onto my equanimity was to avoid any and all media.

Then there were the personal losses. Several people I knew and loved died, most of them too young, many from breast cancer. But the one I will miss the most acutely died at the start of the penultimate week of 2015, five days before Christmas. She died of metastatic breast cancer. Her name is Carolyn Frayn.

Even though it was a wretched year, losing Carolyn makes it painful to let go of 2015. I do not want to have to endure a new year without her friendship. I do not want to accept that there will be no more phone calls or texts or Skype chats or ridiculously long and funny and cozy conversations on Facebook chat with her. No meandering emails, no more mutual rants about Pinktober, no more of her art, no more trenchant, poetic writing on her blog, the Art of Breast Cancer. No more Carolyn. How can this be? Not for the first time in my life, I hate that the earth turns, impersonally, thoughtlessly, on its axis.

Carolyn, 3 years before breast cancer

One of the things I love (I refuse to use the past tense) about Carolyn is knowing that I am not the only person who could write a blog post like this. Because of MBC and its treatment, she pretty much felt like shit for most of the time I knew her. ‘Knew,’ fucking past tense. I think this might be the first time I’ve actually spelled out the word ‘fuck’ on this blog. Fuck. Fuckity fucking past tense. She was tired, sick, hurting, afraid, and angry a good deal of the time. Yet, she was also kind-hearted, intelligent, creative, loving, and hilariously funny. She generously sought and nourished several friendships with like-minded souls she met in our cyber community. I was only one of them. There is comfort in knowing that many, many people out there besides me love her (NOT in the past tense) and will miss her forever.

One of them is her systir Julie Frayn, with whom I also became friends. As if it weren’t wonderful enough to know Carolyn, I also got to know Julie, a fellow writer and blogger, an award-winning novelist, and truly the best sibling on the face of the earth. Julie, who was by her side as often as possible during Carolyn’s last weeks on this earth. Julie, who also has a job, a home, and a mother with worsening Alzheimer’s. Julie, another smart, articulate, funny, beautiful, and good-hearted soul whose heart should never, ever have to endure such a soul-sucking loss. Goddammit.

Julie & Carolyn Frayn, flipping systirs

I have a misty memory of Carolyn and I stumbling upon each other’s blogs sometime in early 2013, not long after she published her first post. But we became friends because of a phrase. The phrase was ‘Fifty Shades of Pink.’ In the lead-up to Pinktober of that year, we had both written blog rants for which we wanted to use that title. I published mine, Fifty Shades of Pink — and Still No Cure, the day before she planned to publish hers. So, she emailed me to ask if I minded her using the same title. I told her that of course I didn’t mind, and was frankly surprised no one besides us had used the phrase for a post title before. So she published hers, Fifty Shades of Pink…the Rant, the next day. We both thought it would be great if all of our blog sisters flooded the blogosphere with posts of that title for Pinktober. That didn’t happen, but what did happen is that she and I became instant fast friends. We pretty much burned up Facebook chat and our email for three days straight. That soon led to phone calls, texts, Skype, any way we could communicate except a visit in person.

Yes, we talked a lot about breast cancer suckage, and Pinktober suckage, and stupid, unaware people who do not get that breast cancer is not a pink sorority party. We also talked about families, and shitty relationships, and aging parents, and our art photography, and cameras, and kicking Photoshop’s ass, and kicking WordPress’s ass, and writing code, and Doctor Who, and nerdity and geekitude, and a lot of other things. One day, we spent hours on Facebook exchanging YouTube links of our favorite bits from British comedy shows. When she was enduring chemo — again — I sent her a really soft hat and a pair of the best socks ever, made of thick, hand-knit cotton. Once, when I failed to find a link to stream a British mystery show I wanted to watch, she got one of her sons to help me figure out how to download torrents and watch it that way. Didn’t matter much what the subject matter was. Whatever we talked about, it provided another opportunity to cuss eloquently, get silly, and make each other laugh.

We shared friends in our cyber world. One in particular was Shelli Ray Gibbons, another friend with metastatic breast cancer, who wrote one of our favorite blogs, the Dirty Pink Underbelly. Another sister of snark, wit, and gloves-off candor, the three of us enjoyed a bond forged of those qualities, plus enormous affection and trust, until Shelli died of MBC on Valentines Day, 2014. Carolyn and I mourned her together and continued to cherish those brief months of our short-lived trio.

Our favorite of Shelli’s posts is a classic that I plan to repost every Pinktober. Called, Any One of Us Could Go at Any Time, Shelli hilariously and utterly shredded that bromide that stupid people toss at folks who live with a disease they know they will die from: “Well, listen, any one of us could get hit by a bus tomorrow.” She described how an old friend of hers, who’d been in a severe car accident, told her that she thought of Shelli as she was waiting to be extricated from the hunk of metal that was once her car. “She thought of me and how any of us could Go at any time. Go in this instance being a euphemism for dying, not a confession that she had just soiled her underpants.” After destroying the euphemism in the rest of her post, Shelli ended it by saying, “Please discuss this post today and for my next post, let’s talk more about death[…] And what your thoughts are [in those] last few moments before you go. Again, by go, I mean die, not take a tinkle.”

Once, during a Skype chat, Carolyn told me I might be crazy. I laughed. “You wouldn’t be the first to think so.” I said. “But why do you think I’m crazy?”

“Shelli and I used to talk about you,” she said. “She loved you to pieces. We loved that you wanted to be friends with us, but, well, you know…she died. And I’m going to die. And that sucks.”

“Yeah, that does suck.” I said. “Maybe I am crazy. But how could I not be friends with both of you? I mean, that’s not even possible.”

“Yeah, but I come with an expiration date. I’ll probably die before you do.”

“Yeah, maybe. But you do know, Carolyn, that I could get hit by a bus tomorrow. I mean, any one of us could go at any time. And by ‘go,’ I don’t mean tinkle.”

Uproarious laughter.

Carolyn & grandbabies, August, 2015

In one of her early posts, I Hope I Grow Moldy, Carolyn talked about her expiration date.

My expiration date is between July 2015 and July 2022. I think the three years actually puts the minimal around July 2014, but I’ll go with 2015. The year 2022 if I am very very lucky. Do I feel lucky? All my life I have been the lemon person, then the lemon patient. If there is a small percentage of could have or might have been I’ll fall into that percentage. Who gets spinal meningitis twice? I do.

After the stage IV bomb my sister gently told me that since we know this to be true, that I am the lemon, perhaps I will fall into that small percentage that lives those wonderful extra years with this impending death sentence, maybe I’ll die of something else. My family doctor reminded me that we all have an expiration date, I just happen to be able to reach out and touch it.

Both of those statements struck me, I decided to simply strive to do well in my window, to live happily, to live fully.

And you did, Carolyn. You surely did. And I’d have been crazy to have missed out on one nanosecond of our friendship.


pixelstats trackingpixel
Share