The Accidental Amazon

Now and Then

As of this July, it will have been ten years since that fateful Thursday when I was told my breast biopsy was positive. Thus began an accumulation of anxiety, misery, and paper. You’d think, in the age of patient portals and electronic medical records, that even cancer would generate less paper. It does not. And did not ten years ago.

At first, I did a fair job of handling all the paper that people kept giving me. I’d scan and store documents I needed to keep on a hard drive, then discard the paper. Conscientiousness soon gave way to the cancer tsunami, however, and I found myself too overwhelmed to do anything but throw it all into a pile as soon as I got home from yet another medical appointment. To this pile I added every piece of mail I couldn’t immediately recycle, including the few bills that still arrived via snail mail. Had I not long before set up online automatic bill payment, I might well have tossed things like mortgage and utility bills into this pile and forgotten to pay them. As the piles grew too tall, I’d toss them into paper bags, and shove them under the kitchen table. When you’re single and have cancer, this is how you cope with stuff you can’t cope with, because you can barely cope with the stuff you have to cope with.

Three years ago, seven years post-diagnosis, my fatigue had relented enough that I finally felt equal to doing some spring cleaning. I bought a small shredder. I began to tackle some of this paper, which by then had grown to several bags and boxes, tucked not just under the kitchen table, but in the corners of every room in my house except the bathroom. I estimated at the time that I managed to dispose of about 400 cubic feet of old paper that spring. And still had a long way to go.

The following year, I decided to buy a patio fire pit. My thought was that I could just burn some of this shit, that it would be easier than shredding, and that the ritual of scorching away the old trauma in a cauldron would be fun. Turned out it wasn’t as easy as I thought it would be. In fact, it was more work, and it did not, as I’d hoped, enable me to catch up. But on October 30, 2016, I did have one satisfying fire, in which I burned some old records from diagnosis, surgery, and radiation, and thus sent Pinktober on its way.

Since then, life has thrown a few new curveballs at me, once again involving health care, stress, fatigue, and an accretion of paper. But finally I decided to purchase a new and better shredder. It was delivered last Friday, and is pictured in the photo above. It handles a lot more paper, and works a long time before getting over-heated. So, this past weekend, I dragged out some more piles and boxes of old records and got to work.

As luck would have it, the first pile I came upon contained all the receipts for veterinary bills from January of last year, covering the final wretched weeks of my cat Fiona’s life. Indeed, the one on top was for the day she died, when she was finally diagnosed with abdominal cancer and sepsis, and I had to let her go. All of the sorrow and agony of those weeks came back to me, all the heartache of watching her suffer, of not getting an accurate diagnosis until the very end. I sat and wept all over again. A while later, I came upon the pile of paper pertaining to the , to remove three disks from my neck and fuse the bones to keep my spinal cord from being compressed. I thought I’d kept up with that mess fairly well during the several weeks I was out of work recovering. But I swear medical records seem to propagate themselves. Remembering the whole nasty thing made me feel tired and achy, and reminded me that cancer isn’t the only fantastically shitty health problem that can muck up your life for a long time.

But my new shredder worked splendidly, and I was beginning to see parts of my kitchen floor that I haven’t seen in months. So I plowed on. And near the top of the next pile was a copy of the pathology report from the surgery that removed half of my right breast on August 14, 2008. Bloody hell. Once again, memories I’ve already processed a million times came flooding back in vivid detail. And I had to stop. And cry.

Back to the Beginning

Shortly after I was first diagnosed, I ordered a bunch of DVD’s to watch while I was out of work getting slashed, burned, and poisoned. Chief among them was a boxed set of the old TV series, “Absolutely Fabulous.” If I had to feel like shit, I figured I could at least give myself a reason to laugh my ass off now and then. I charged them to a credit card I didn’t often use. After four or five months of the cancer tsunami, and shoving my mail into bags, I finally opened the most recent bill for that credit card, and discovered that I had not yet paid it and had incurred late-payment charges.

I remember how astounded I was at the time to realize how utterly and completely I’d forgotten about ordering those DVD’s in the first place. I’d watched them by then, but the memory of how I came to possess them went into that slush pile that our brains seem to create the instant we are traumatized by a cancer diagnosis. You know what I’m talking about. Suddenly, without your conscious awareness, your brain tosses everything in your world that is not immediately pertinent to cancer into a black hole.

It was hardly surprising then that I’d forgotten something as trivial as a credit card bill for a box of DVD’s. I sat there, looking at this piece of paper, wondering how I was going to explain myself to the credit card company. But I was already so tired of explaining myself, mostly to people I knew, who had, sad to say, no genuine understanding of what the hell I was going through, and would instead wonder aloud why I wasn’t “over it” yet. So, how was I going to explain to a total stranger that their bill had ended up in a paper bag under my kitchen table for months on end?

My next reaction was to feel guilty that I’d “let” cancer mess up my sterling credit record. As if. Finally, some kindly voice in my head made a simple suggestion: just tell the damned truth and play the damned cancer card. I had so far been reluctant to use it. But if ever there was an apt circumstance, this was it. So, gritting my teeth, I did. And the nice woman on the phone wiped out the late charges and told me to take all the time I needed to get caught up. I remember sitting there afterwards, relieved and grateful. And crying my eyes out and feeling stupid. And having a talk with myself about self-acceptance and coping and forgiving myself for having a cancer card to play at all. And about how playing it didn’t make me a weak person, just an honest one.

Then and Now

Grief is a tricky bugger. So is memory. We think we’re done mourning, and a piece of paper we’re about to shred can shred us instead. But after enduring remembered heartache this weekend, I decided it was okay, that I was okay. Because it’s not ten years ago and it’s not last year. And I’m still here. And my heart is still not too shredded to feel and remember and value what and whom I’ve lost.

Faulty plumbing.

There are a lot of reasons why we seem to get more leaky as we get older. But, as with breast cancer, the main risk factor for developing some form of urinary incontinence is being female. We get used to it early, in a way. Once we start menstruating, we leak blood every month. When we are sexually aroused, we leak vaginal fluids. Then things happen that disturb our urinary control. We have babies. We have urinary tract infections. We have surgery that may require the insertion of a catheter during and after our time in the operating room. But men develop urinary and bladder problems, too, sometimes because of an enlarged prostate or prostate cancer and its treatment, as well as because of infections, medications, or catheter placement during hospitalizations. And, common to both sexes, as we get older, stuff wears out. Our nerve signals may not work as well as they used to, so we may not know as quickly as we should when our bladder is full. Our strength and endurance may decline, making it harder to get to the bathroom in time. After giving birth, or going through menopause, breast cancer treatment, hysterectomies and oophorectomies, or other experiences that can change our hormones, our muscles and mucosa may get thinner and weaker. Our thirst signals may not work as well, so we may not drink enough fluids, leading to concentrated urine that can irritate the bladder. We may get constipated more easily, which affects bladder function. There are lots of reasons why we may leak, and I won’t try to cover them all. But I will say this: we can very often improve things fairly easily.

It’s always good to check in with your doctor — primary care, gynecologist, urologist — to rule out medical issues. But you may also want to see a physical therapist. Lots of us physical therapists are trained in treating urinary incontinence. And some PT’s are specialists in pelvic rehab. Particularly if you have pelvic pain, problems during and after pregnancy, painful sexual intercourse, a neurological disorder, or a prolapsed bladder, you may want to find a specialist physical therapist for pelvic disorders. You can start by doing an internet search for “pelvic physical therapy,” and adding your geographic location. One of my friends locally is a specialist and runs a clinic devoted to pelvic disorders. In my work in home care, I assess every patient I visit for urinary issues, like dribbling, urgency, bothersome frequency, and nighttime urination. Often, these problems are temporary, and develop after other medical issues that decondition my patients or require them to take new medications. So, their urinary issues may resolve on their own once we address those other problems. But a little instruction specific to urinary incontinence is usually helpful.

How to Strengthen Your Pelvic Floor — It’s Easy.

I’m not going to bore you with a lot of physiology. I usually teach people how to do a few simple exercises in a seated position. The main one is learning how to find and strengthen the pelvic floor. Basically, the pelvic floor is what you’re sitting on when you sit, and it acts like a sling to keep our innards in. For all of us, the anal sphincter is in the middle of it, and for women, our vaginal wall is near the front of it. If you sit up straight and comfortably, feet on the floor, and close up your anal sphincter like you are trying not to pass wind, you’re using your pelvic floor muscles. If you’re tightening your belly or your buttocks, you’re working the wrong muscles. It’s basically a gentle exercise that looks like you’re not doing anything. But when you do it right, you’ll feel a section of your pelvic floor pull gently up and slightly forward. If you do that ten times quickly, and then five times slowly and deliberately, you’ve got yourself an exercise program to help reduce urinary incontinence. I had a female patient recently who, when she had to urinate, would start gushing urine as soon as she stood up. A few minutes after the first time I had her practice doing what I just described above, she felt the need to urinate, stood up, and for the first time in months, was able to get to the bathroom without leaking first. Admittedly, that was a pretty dramatic result, but if you hang in there and do this every day, you should notice some improvement in a week or two.

There is this wonderful pelvic physical therapist in Australia, Michelle Kenway, who has an entire website full of resources, including videos, that covers every aspect of pelvic disorders. She has a video which describes in more detail how to do the above exercise to strengthen your pelvic floor, which you can view here:

In case you have trouble playing the video from this page, here is the link to it on YouTube: How to Control Bladder Leaks and Get ‘The Knack’

A Caveat: Why I hate the word, “Kegels,” and never refer to pelvic floor exercises by that name.

Years ago, when I first got some continuing education in urinary incontinence, I confirmed a theory I already had, which was that Dr. Kegel, who apparently invented them, had an incomplete understanding of anatomy. Or that everyone teaching women how to do Kegels did. The way Kegels often used to be taught was that you were instructed to strengthen your pelvic floor muscles by stopping your urine stream. Period. And guess what? It didn’t work, and women still had urinary problems. Here’s the thing I learned in continuing ed. When you stop your urine stream, you may be using your pelvic floor muscles, but you are also interfering with the bladder’s own signals, which tell the bladder muscle to keep urine inside while you’re walking around, and then to release it when you urinate. So, when you start to urinate, and then stop your urine stream deliberately, you are confusing your own bladder. And thus, rather than improving things, you can make everything worse. So, please don’t EVER sit on a toilet, start peeing, and then try to stop yourself. EVER. Unless you are being assessed by a physical therapist who instructs you to do it, ONCE maybe, as a test, or to help you find your pelvic floor muscles in the first place. And even then, there is usually no need to literally stop your urine stream, because there are other ways of locating the pelvic floor. Unfortunately, pelvic floor strengthening exercises are still referred to by some folks as Kegels, and a lot of women still get the wrong instructions.

How to help the bladder indirectly.

In the months leading up to when I first took that continuing ed course, I was working in outpatient rehab, and I had a lot of patients with back pain. And, among other things, I would try to help them loosen up and strengthen their hip rotator muscles, which are deep inside the buttocks and near our sacroiliac joints, as part of an exercise program to help them improve the function of their core muscles. And what often happened was that, after a week or two, they would mention in passing that they noticed they weren’t leaking urine or having to wear pads to bed anymore. At the urinary incontinence course, I discovered why. It turns out that the bladder muscle, called the detrusor, relaxes to hold urine in, and contracts to push it out. And the nerve fibers that signal it are apparently shared by the muscles that rotate our hips. So, it is thought that by doing exercises for our hip rotator muscles, we can indirectly help the detrusor. In my experience, it certainly seems to help the situation, so here is the simplest hip rotator exercise. You can click on the picture and save it, too:

When More Is Less, and Less Is More

Part of what I like to think makes my blog unique is that I’ve been a cancer patient as well as a clinician treating cancer patients. So, I have one foot in each camp, as it were.

This blog, and my introduction to social media, germinated almost ten years ago after I had been diagnosed with breast cancer in July of 2008. Desperate for help and information, I found my way, as many have and many will, to BreastCancer.org and it’s online, peer support community. Dozens, possibly hundreds, of the people I connected with in that community are still my friends online all these years later on other social media. Then and now, these friends help validate my experience and often provide helpful information about breast cancer and treatment and side effects and middle-of-the-night freaking out. Back then, communicating with them spurred me to start reading research studies again, which I hadn’t done much of since physical therapy graduate school. Because of that, I began to connect with clinical and medical and science websites, and with researchers who’d published interesting studies or were seeking study participants. One of the most helpful experiences I had early on was finding an online listing for two doctors within driving distance who were conducting a clinical trial on treating cancer related fatigue. Thus, I am one of the first people to extol the virtues of social media and of those of us who employ it to advocate for better healthcare.

But…

And it’s an important ‘but.’ I may write about healthcare here in cyberspace, but in my daily, real-world job, I work in the concrete world. I do connect with a secure server to upload my patient notes and download my schedule each day on my work laptop. And I email my colleagues and share a few pdf’s.

But my real work has little to do with zeroes and ones. I see patients of all ages, with all kinds of healthcare problems, in their homes, and try to teach them to walk better or not fall or to get out of bed without pain. And I have to tell you that, for most of them, social media has little to no impact on their experience of their own health and healthcare. A few of them might have a Fitbit. A few might have a patient portal account that they use to email their doctors’ offices or confirm upcoming appointments. And that’s about it.

The last thing that most, perhaps nearly all, of my patients would consider doing when they have a health crisis is to get online. You’d be forgiven for thinking this is an age thing, that it’s because most of my patients are elderly. And you’d be wrong. Sometimes, it does occur to a few of them, or to one of their family members or caregivers, to buy things like tub seats and walkers online. Most of the time, however, I have to tell them they can buy that stuff online. I have to tell the folks who have uncommon chronic diseases, or even common ones, that there are online communities that can help them feel less isolated. I have to tell them that there are websites for our state’s department of health, the department of elderly affairs, the local hospital or orthopedic practice, for Cancer.org, for the American Diabetes Association, etcetera, ad infinitum.

Pay No Attention to That Charlatan Behind the Curtain

Why don’t people get online for help with their health issues? Because they have health issues. Which means that they feel like shit, they’re exhausted, confused, overwhelmed, in pain, and generally gobsmacked. And the last thing they feel like doing is anything that does not immediately and concretely help them to feel better. And you know what? Mostly, I’m glad they don’t get online. I want them to listen to me and their doctors and nurses, and to follow our advice, not to read most of the execrable bullshit that passes on the web for healthcare information. I do not want them getting their health advice from the likes of Gwyneth Paltrow or Dr. Google. It’s bad enough that they watch TV. I wish I had a dollar for every time I’ve had to refute some nonsense a patient heard via Doctor Oz.

It’s hard enough for me to sort through the dross on the web to find the genuine nuggets. And I have an advanced degree in science. And I still get hoodwinked sometimes. But I also have online friends who are scientists, doctors, and intelligent healthcare journalists, and we help each other wade through the swamp.

That is not, however, true for most people. I have some very admirable friends online who have devoted themselves to improving health literacy, who work hard to improve their own, so that they can provide the patient’s perspective to researchers who design studies. But the odds that most of the thousands of people I have ever treated in the past twenty-five years could or would find their way to these web advocates or others like them is a snowball’s chance in hell. For real.

A Breed Apart

The thing to keep in mind is that those of us who are members of the healthcare social media community are not most people. Yet we may think we’re more important than we really are to most people. If there’s one thing that social media is good at, it’s declaring how important and influential social media is. And that’s true, up to a point. But we need a little humility, a little perspective about our role. When you have crushing, unrelenting chest pain, the sensible response is not to Tweet about it. You call a freaking ambulance.

I remember the first time I took a survey — one of several over the years — about how useful social media had been to me as a cancer patient. It was put together by a grad student who was working on her Ph.D. and whose mom had had breast cancer. It was pretty good. But when I got to the questions about who did the most to help me outlast cancer, or who I could most count on in a crisis, none of the answers included social media. The answers included the doctors and other clinicians who treated me, and the friends who drove me to see them. And yet, to hear some tell it, social media is going to save us all and reinvent the healthcare system. Really? Tell that to all my patients and work colleagues. Social media has facilitated awareness, research, and patient support. And it will continue to spur new and worthwhile ideas and projects. But the rest of the fix is not that simple.

In the Trenches

If you want to hear a passionate discussion about how to fix the healthcare system, talk to another clinician. And I don’t mean online. I mean in person, in a clinical setting or at a seminar. Or at the local pub over a beer or three. You’ve never heard intelligent snark like you’ll hear from us. A few of the doctors I’ve known over the years, who have also treated me as a patient, are especially enlightening. When I see them for a checkup, we often spend the first few minutes having a nice, soul-cleansing rant about it all. Do they check out social media for ways to further the cause? Hell, no. They have neither the time nor the energy. Frequently, neither do I. We’re all too busy trying to help our patients get better, or returning their phone calls, or typing notes about them on a computer, or wrangling with insurance companies and their criteria for reimbursement, or going to meetings and continuing ed seminars so we can remain competent enough to keep our licenses. On a daily, practical basis, has social media or digital documentation made our work easier or better? Not really.

I don’t have any immediate answers to this conundrum. And the ideas I have would require another blog post. But I can tell you one thing. When my patients improve, it has everything to do with how much access they feel they have to a real-world clinician who knows them, and how empowered they feel to take responsibility for their health. And then to do what they truly need to do in order to get better. And that’s where fostering the nexus between social media and the real world may be genuinely useful. Any and all ideas welcome. In the meantime, onward, friends.

“Still, what I want in my life
is to be willing
to be dazzled—
to cast aside the weight of facts

and maybe even
to float a little
above this difficult world.
I want to believe I am looking

into the white fire of a great mystery.
I want to believe that the imperfections are nothing—
that the light is everything—that it is more than the sum
of each flawed blossom rising and falling. And I do.”

― Mary Oliver, House of Light

Last year was a hard year. At this time a year ago, there were a couple of bombs about to go off in my personal life. One was that my elderly and much beloved cat, Fiona, was dying of cancer, but I didn’t know it yet. The other was that I was rapidly developing symptoms that, being a physical therapist, I would consider and reconsider, and finally realize I had to do something about or face disability. I variously wondered if I were developing a neuromuscular disorder, like multiple sclerosis, or if the neuropathy in both hands, the eroding balance, and the overall muscle weakness were the result of something more mechanical, but equally alarming, like a pinched nerve from a herniated disk or arthritis in my spine.

By the end of January, after three weeks of frustrating, apathetic vet care that caused Fiona — and me — a lot of needless suffering, I took her to a compassionate vet hospital where my sweet girl died of bowel cancer at the age of fifteen. And for the first time in thirty-five years, I had no pets in the house. A few weeks later, I adopted two feral female cats that had been separately rescued and brought to a local shelter, where they had languished for several months, waiting for some crazy human to take a chance on them. Not long after that, I had an MRI which showed that my spinal cord was being compressed by three bulging disks in my neck, and I needed surgery urgently. I went on leave from work in mid-April, had surgery, and did not return to work until late June. I had side effects from the mechanics of surgery for months — still do, in fact — but I could walk again without a cane, hold a pen and use a keyboard, feel my patients’ pulses with my fingertips, and do my job.

Meanwhile, in the online breast cancer community, we were losing people. Nothing new there, sad to say, but we were losing ass-kicking, brilliant, well-known and much-loved advocates and activists. People like Lori Marx-Rubiner, a long-time advocate and blogger whom I’d finally met in November of 2016 at a conference on MBC. Like Beth Caldwell, an attorney, activist and co-founder of MetUp. One of those we lost was my friend Susan Hamson, aka , known to many from her blog, The Sarcastic Boob. Susan had been dying by inches of metastatic breast cancer herself for much of the time I’d known her, but especially in 2017, she was teetering on the edge, alternately in a hospice facility and in an acute care hospital. Not long after I was finally returning to work, Susan was beginning to lose the ability to communicate. Less than five months later, on November 14, 2017, she died.

I still cannot type about, or talk about, or think about her death at any length without feeling completely gutted. Many of you know what it is like to form a heartfelt, mutual bond with a sister in our cyber community that extends into all forms of communication. Many of you also know what it’s like to finally meet one of these precious friends in person. In October of 2016, I not only got to meet her, but I got to have her as a guest for a three-day weekend at my home, being snuggled by dear Fiona, who knew a cat lover when she met one, and who kept finagling ways to get the three of us in close proximity all weekend. I had tried to talk Susan into letting me take the train to visit her instead that weekend, but I think she knew it was the last time she would be physically able to attempt such a thing. And I’m a clinician, and I live down the street from the hospital system that employs me, and I knew if something dire happened, I could look after her. So, she came, by Amtrak, from NYC, to the charming, late-Victorian train station ten minutes from my home in southern New England. It was lovely, and I will always cherish the memory of that visit. But it makes my grief all the worse. She deserves, and will get, a post from me that is devoted solely to her, but not just now, not just yet.

Then there is the world, this country, and its politics. There is the sobering awareness of the scale of sexism and misogyny we’ve all experienced, an awareness brought about by the #MeToo movement. There are still and ever mass shootings. There have been ungodly natural disasters that have destroyed swaths of America by hurricanes, fires, blizzards, you name it. The drinking water crisis in Flint, Michigan is still unresolved. All of these things have affected the lives of countless individuals, changing them forever. One of my friends and colleagues was hit last year by a drunk driver while she herself was driving to visit a patient. She lived, but she has been unable to work since. And for me, there is the reality of working in home health care, and visiting people who are disabled or sick or old or poor, or all of the above. And of being astounded at how utterly ignorant, how lacking in any sort of compassion, that dozens of our national elected and appointed so-called public servants apparently are toward the reality of the people I treat every day. I’ve had to learn to ignore a lot, or limit my exposure to a lot, else I could not get out of bed in the morning.

One thing I’ve discovered though is that, miraculously, nine years after I was diagnosed, the personal aftermath of my own breast cancer and its treatment doesn’t bother me much these days. Sure, any year now, I could have a recurrence. But I don’t seem to live in the “could” of it anymore. The possible seems to have been shaken right out of me by the actual. A year ago, I was on the road to being permanently disabled by something that wasn’t cancer. Nothing like perspective. After the past year in particular, you can scarcely escape the awareness that there is a whole lot of other shit out there that can destroy life as you know it.

So, at the beginning of this new year, while I dig out of the large pile of snow Mother Nature just dumped on us here in New England, I want to thank my real-world and virtual-world friends, and my blog readers, for being there, and for helping to leaven the heart-breaking parts of the actual with the sheer vitality of your daily existence. I thank you all for being kind, and funny, and whip smart, and perceptive. I thank you for giving a shit about the world and about me, for laughing at my attempts at humor, and for cheering me on as I try to convince two feral cats that humans are indeed worth loving. I am so grateful to you and to the fur girls for helping me to discover that I can still be dazzled, and that I am still willing to be.