Calling the Shots — A Book Review

Recently, I had a new homecare patient who had visited the ER with acute symptoms of a pinched nerve in her spine. She had pain, muscle spasms, and burning numbness all the way down one leg. She’d had an X-ray which was pronounced negative for a fracture, but the causes of pinched nerves usually cannot be confirmed without an MRI. She was offered no advice about pain management. Instead, she got sent home with the suggestion that she see her regular doctor.

She did see her primary care doctor, who referred her to a spine specialist. The specialist did order an MRI. The MRI showed not one, but several contributing factors that explained her symptoms. The specialist then referred her to a neurologist to rule out a few other things, but did not offer any treatment. She saw the neurologist, who ordered lab tests. While she was waiting to get those tests, her primary care doctor referred her to our agency for home nursing and physical therapy. By then, six weeks had gone by. In all that time, none of these doctors had prescribed anything for her pain, except to suggest she take tylenol, an analgesic that may reduce fever and muscles aches, but does not reduce inflammation or nerve pain.

When a pinched nerve occurs, it means the nerve root that is exiting the spinal cord is inflamed from being compressed, and is causing all kinds of nasty sensations down one limb, which can lead to permanent muscle weakness and peripheral nerve damage if not addressed. It is standard practice to treat a pinched nerve by prescribing a strong anti-inflammatory, sometimes even a short course of a steroidal anti-inflammatory, and often to prescribe something like neurontin to mitigate the altered nerve sensation. This is not rocket science. By the time I saw this patient, fully six weeks after her symptoms started, none of that had been done. She’d tried tylenol, but it hadn’t really helped. Big surprise.

“Why didn’t anyone give you something else for your pain?” I asked her.

“I don’t know,” she said.

“Did you ask them for something?”

“Well, no. I thought they would realize how painful this is, and that tylenol was the best thing they could suggest.”

Meanwhile, I proceeded to educate her, advocate for her, and do what I could to relieve her symptoms. She likely needs surgery or at least anti-inflammatory injections in her back. She is feeling better, but is still trying to find a doctor who will offer an acceptable solution.

This kind of scenario gets repeated far too often in our healthcare system, and illustrates two of the primary issues addressed by author and blogger Beth Gainer in her book, Calling the Shots. The first issue is how doctors may not offer adequate and timely help in the first place, including how to manage basic symptoms like pain. The second is how patients assume that doctors know how they’re feeling and don’t insist on more effective help. Neither one is a good healthcare strategy.

In a perfect world, we wouldn’t need a book like Calling the Shots. Nor would the author herself have had to experience the sometimes appalling but not uncommon slings and arrows of the healthcare system that led her to writing it. But if you’ve ever been a patient, especially one with a serious illness or injury, or have ever advocated for a loved one who’s a patient, the odds are high that you know all too well that the healthcare system is far from perfect.

I know firsthand how imperfect it is. As a patient, I’ve endured many experiences similar to the ones that Beth describes. As a clinician working in homecare, I spend virtually every work day trying to prevent such experiences from happening to my patients. You might think that clinical experience would have made it easier for me to navigate the system and to prevent such experiences from occurring to me when I was diagnosed with breast cancer. And you’d be wrong. Indeed, it was largely because of those experiences that I started this blog.

Don’t be surprised if, like me, you manage to read Calling the Shots in an afternoon. But don’t let that fool you. The book may be concise and easy to read, but it packs a powerful message. And that message is that you are and must be in charge of your medical care, and that the outcome of the treatment you receive may depend entirely on how well you take charge of it.

In straightforward prose, with examples drawn from her experience, Beth outlines practical steps you can take to make sure you are getting what you need, even if you’re not sure what that is. It can be challenging to advocate for yourself when you are at your most vulnerable, but even then, Beth’s concrete advice can help you wade through your own uncertainty. When you are not up to advocating for yourself, she describes how to identify others who can help advocate for you, and how to restore the feeling that you are in control.

The more serious your health issues may be, the more complex and difficult your treatment may be, the easier it is to feel like hanging onto the reins is like trying to herd cats. All too often, we can feel that, rather then heading up our own healthcare team, we are at the mercy of schedulers, gate-keepers, slow diagnostics, and miserable side effects. Beth draws from her own experience of all of these issues and more to outline steps we can take to identify how we feel and what we need. Those steps can be accomplished with tactful, but assertive, direct communication. If we still are not getting what we need and want, we can and should fire those clinicians who bully or obstruct us, and find others who won’t.

And we have every right to do so. If there is one overriding message to Calling the Shots, it is to remind us that we have rights as patients, that we should be the reason for the healthcare system, and not its victims. Read this book and empower yourself.

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A Different Butterfly — 15 Random Roads I Might Have Taken

Well, it’s been another bruising week of news stories, and I felt the need to distract myself and perhaps you, dear readers, at least for a little while. So, I’m taking up Nancy’s “15 Random Facts Blogging Challenge.” With a slight twist. I was lucky enough to wander down many roads in my younger days. And had a few things gone differently, I may have turned out to be a whole other kind of butterfly.

1. When I was in my twenties, I endeavored, somewhat seriously, though not very ambitiously, to be a rock star. Which leads to #2.

2. For several months, I fronted a blues/rock band as the lead singer. Until, that is, the lead guitarist and the rhythm guitarist had a huge fight at rehearsal one day and decided not to play with each other — or the rest of us — anymore. Since between them, they owned nearly all of our sound equipment, that was the end of the band. I don’t even remember now what we called ourselves. The rest of my aborted rock singing career was much of a piece, sad to say. Would-be rock musicians are not the most dependable colleagues.

3. My audition song for the above band was “Jailhouse Rock,” made famous by Elvis Presley. This was sung at the band’s request. Yes, I was surprised, too, that a bunch of boys mostly into people like Jeff Beck, Eric Clapton and J. J. Cale would ask for this. However, I guess I put it across, because they told me I had the gig as soon as I was done. This was after admitting that they expected me to sound like Joni Mitchell, and were astonished when I sounded more like Wanda Jackson. I told them I could, in fact, sound like Joni Mitchell if I wanted to, but I was adaptable.

4. Speaking of which, my favorite band audition, at least song-wise, was getting to sing Led Zeppelin’s “Whole Lotta Love.” The thing about being a female mezzo soprano is that you can pretty much cover and even exceed the vocal range of most male rock-and-roll tenors. Robert Plant? Piece of cake, including growls and wailing the high notes. Roger Daltrey? No sweat. Musically, this particular band had decent chops, at least on Led Zeppelin tunes, and they were impressed with my vocals. But it didn’t take long for me to suss out that they were mostly interested in getting high with and laid by their imagined future groupies. No thanks, dudes. See ya.

5. Speaking of vocal imitations, I can still do a very creditable Grace Slick. “White Rabbit” and/or “Don’t You Want Somebody to Love.”

6. I’ve also been known to do a believable Stevie Nicks, which, for some reason, works really well when my allergies are acting up.

7. Yes, I can indeed sing like Joni Mitchell. One of my favorites of her songs to sing is “Blue.” Just love the opening: “Blue-oo-oo-oo-oo-hoo-hoo, songs are like tattoos. You know, I’ve been to sea before. Crown and anchor me, or let me saaaiiiilll aaaa-waaaaayyyyyyy!” Hell, I can sing the whole damn album, which, in my opinion, is still one of the greats of all time. “I am on a lonely road and I am traveling, traveling, traveling.” Truer words… Wish I could play the piano as well as she.

8. I can sort of play the piano. I used to noodle around with our beat-up piano when I was a kid. Particularly when I was the only alto in the kids’ church choir, I used to spend hours after school playing Christmas carols so I could work out the alto parts confidently. When you’re the only alto, and the only kid who can harmonize, you have to be loud. I was.

9. I can still read music, although I’m rusty. I tried, albeit not very hard, to teach myself to play the guitar when I was in high school. Secretly, I wanted to learn to play the drums. But there was this kid who lived across the street, whose parents let him practice his drum-playing in a tent on their front lawn, much to the agitation of the neighbors. I’m not sure if it was everyone’s ever-more-threatening complaints or the kid’s lack of rhythm, but the drum-playing stopped after a few months. Thereafter, I decided not to bring up my secret aspiration.

10. I did take piano lessons in my twenties. Only problem was that I didn’t have a piano in my apartment to practice on. I bought an electric keyboard, but it didn’t really lend itself to Chopin and Mozart. Then I took voice lessons to strengthen my vocal chords against the vicissitudes of singing rock songs. For that audition, inspired by Linda Ronstadt, I sang the Eagles’ song “Desperado.” Mind you, this teacher mostly taught classical singers, but she played the piano sheet music I brought gamely and ably. And when I was done, she said, “You don’t need me to teach you how to sing. You already know how to sing. But I could teach you how to stretch your voice a little.” Gosh! Naturally, I was game. Her version of “stretching” was to have me listen to and practice singing Maria Callas’s version of ‘Vissi D’Arte’ from Tosca. So help me. After several lessons, I think I was able to get through it without weeping (it’s that kind of aria). Then I got busy with other stuff and moved on.

11. That might have been around the time I went to modeling school. I had this idea that modeling paid better than running the word processing department at Boston University (my current job then). So if I could do that instead, I could make enough money working part-time so I could have more time to pursue rock stardom. Or something. In any case, it was a brief course on Wednesday nights. Best memory had to do with the photo shoot scheduled at the end of the course. Now, my dad was a photographer, and my then-boyfriend was a photographer. So, I knew from photographers. For our photo shoot, we had been instructed to bring a dressy outfit and a casual outfit. The night finally arrived, and the fashion photographer strolled in, plunked down a couple of enormous equipment bags, looked around at our nervous faces, and said, “So, have you all got your scuba-diving gear ready?” Swear to god, I was the only one who laughed. Duh. Needless to say, he and I hit it off. But he also kindly gave me the lowdown on the average income potential of modeling in Boston, which was not as much as I’d hoped, and the effort it would take to earn it, which was a lot more than it took to run a university word processing department. End of that story. Nice pix, though. Can’t find ’em, sadly.

12. At which point, I decided to take advantage of BU’s tuition reimbursement benefit and work on finishing my bachelor’s degree. I took creative writing classes. No big surprise, eh? Way fun.

13. Not, perhaps, quite as much fun as the art classes I had taken at the Massachusetts College of Art, which sometimes entailed my lugging a large painting-in-progress to work, hanging it on the wall behind my desk, and schlepping it to class. I like to think I temporarily improved the office decor.

14. And then there was the resumption of dance classes at the Joy of Movement studio in Cambridge. I had already studied ballet, tap, and jazz dance for years growing up, so it was great to get back into it. The music was more adventurous, too. Not that I minded dancing to all that Chopin and Bob Fosse as a child. It’s all good when you’re dancing.

15. I could go on. In a different lifetime or six, I would love to have been an opera singer, a jazz singer, an orchestra conductor, a choreographer, an actor/singer on Broadway, a playwright, a costume designer, or maybe a CG/film special effects artist for something like the Harry Potter franchise.

Damn. This whole working-for-a-living thing really sidetracks you, doesn’t it?

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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., 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. 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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