The Accidental Amazon

I’m not complaining. Not really. Maybe a little.

This is the last day of my vacation. I’d been looking forward to it for weeks. Sixteen lovely days off from my job as a homecare physical therapist. Sixteen days when I did not have to figure out how to solve someone else’s health problems, when I did not have to open my work laptop and spend more time than I like documenting how I attempted to solve someone else’s health problems instead of just solving them. Sixteen days when I could do whatever I wanted, or nothing at all.

I had plans, recreational ones. No plans to see any doctors. Just a few plans to have some fun, see a few friends. Not such a big deal on the face of it, but making plans to have fun is something it’s taken me a few years to get back to since being diagnosed and treated for cancer.

Mostly, I had planned to spend a good portion of these sixteen days helping myself feel better, feel good, feel sort of normal. I planned to relax, to eat well, to read, to get outside, to delight in going to sleep without an impossible work day hanging over my head. I planned to drink coffee only when I felt like it because I love the way it tastes, not to have to drink it to get myself going in the morning. I planned not to have to take Provigil to get through the day. I planned to go for walks, to stretch every day, to gently ramp up the sporadic exercise I manage to squish into an average week. I planned to perhaps get myself over this invisible hump I’ve been living with for three-and-a-half years, the not-normal-anymore hump. And if I didn’t quite get over it, I was hoping perhaps to redefine the hump a little, just maybe to chisel down its dimensions to make it fit my current circumstances.

I didn’t make it. Not even close. During my first weekend off, I had a close encounter with a two-year-old with a flagrantly symptomatic head cold, and I succumbed. I ended up spending most of the rest of my vacation in bed, drinking fluids, taking vitamins and anti-inflammatories and various other over-the-counter medications. I took my temperature a lot. I dragged myself to the store and bought boxes of tissues. I refilled my prescription inhaler when post-nasal drip kept clogging up my windpipe. I listened to my lungs to make sure I wasn’t developing bronchitis. I didn’t, thank goodness. I felt a little better every day, but not a lot. After a week, I hauled myself to my doctor’s office, confirmed that I did not indeed have bronchitis, just a stubborn sinus infection, and got an antibiotic. After three days of that, the glue in my sinuses is finally starting to let up. I’m not coughing. I’m finally starting to breathe like a normal person, but I’m worn out. Tomorrow I have to go back to work.

Could have happened to anyone, I realize. I get exposed to lots of fierce germs in my job and don’t get sick. But I don’t often get exposed to small children, who do, let’s face it, seem to spread their own particularly contagious brand of germ warfare like brush fire. But I can’t help wondering if I was at a disadvantage. Because I’ve spent so much of the past three-and-a-half years feeling like a dishrag, remembering with sheer amazement how vigorous and positively rippling with vitality I used to feel before cancer. I’ve spent so much of my time since adjusting, lowering my expectations; trying to accept how I feel now, trying not to compare how I feel now with how I used to feel before cancer; trying to remind myself that how I feel now is, in fact, better than how I felt six months ago, or a year ago, or three years ago. And feeling encouraged by that.

It’s just that the not-normal-anymore hump is always in the way.

Yes, I’m a few years older. Can’t blame that on cancer. In fact, because of cancer, I’m frankly relieved and delighted to be a few years older. It seems, though, that everything else about how I feel now is, directly or indirectly, related to cancer. Feeling broke, feeling out-of-shape, feeling like my energy is always limited; feeling overwhelmed by how many mundane, pedestrian, household tasks are beyond my ability to keep up with; feeling pain in my right shoulder and chest every day; seeing a body that looks different, that doesn’t fit my clothes the way it used to; acknowledging the fact that my priorities have changed and still are changing, that it doesn’t take much to throw me right under the fatigue bus. Feeling a kind of weary, grudging acknowledgement that all of this is, in one way or another, the result of having and being treated for cancer.

Other stuff might have happened to create this not-normal-anymore hump. It just happened to be cancer that happened.

I’m not even depressed about it, which, given my history of depression, is nothing short of astonishing. In fact, I count that as one of the blessings I’ve been reminding myself to count these last few weeks. I’m glad I have a job to go back to tomorrow. I’m glad I have paid vacation time. And health insurance. And a lovely doctor who is my friend, and with whom the other day, I laughed about how we’ve both passed one of those milestone ages that ends in a zero, how we both still find ourselves thinking things and liking things we thought and liked thirty years ago, in an older body we are sometimes astounded to discover still harbors these younger preferences. I’m glad I have a roof over my head. And got to read lots of books and blogs by friends. I even managed to start a new blog and write a few blog posts. And I got to snuggle a lot with my cats, who make me laugh at the fact that they are perhaps the two beings on this earth who regard my being sick in bed as a boon. And I’m glad that my immune system is still, albeit slowly, capable of helping me get rid of this cold.

So, it hasn’t been the vacation I planned. But life, as I’ve so often been reminded these past few years, is what happens when we’re making other plans. And I have another vacation in October. And the dozens of tissues I’ve used during this one haven’t been for crying. And I’m still dancing with NED, as far as I know. And I’m trying to convince myself that that’s good enough. And that maybe I don’t have to blame something when it’s not.

When we don’t feel good, is it always cancer’s fault?

If You Don’t Have One, then Shut the Hell Up.

If it weren’t for the website from whence I borrowed the above photo, I might have lost my mind entirely over the past few months. You’ve got to love a site called Government Free VJJ. The site tagline says it all: “Dear Men in Congress: If we knit you a uterus, will you stay out of ours?” Girl-lilla warfare at its finest. I encourage you to visit and enjoy a nice sardonic chuckle. Then grab some yarn.

Well, let’s see…where to begin? In the last several weeks, we’ve seen countless news reports about American male legislators working their flabby, mostly-white butts off in an attempt to limit women’s access to healthcare. First there was the Congressional panel that conducted hearings on birth control, which included exactly zero members of the female persuasion. Then there was the attempt to defund women’s health services in Texas — the homebase, not coincidentally, of Klan Komen. Plus there were legislative attempts, in more states than I can keep up with, to limit or discourage access by granting ‘personhood’ to our ova, and forcing vaginal ultrasounds on women seeking legal abortions in Virginia, Idaho, Pennsylvania and Florida, to name a mere few. Oh, and the Republican Presidential Candidate-Apparent, the Mittster, apparently wants to overturn Roe v. Wade and get rid of Planned Parenthood. If you can stand any more info, there’s a cogent reading list on Government Free VJJ’s website.

Meanwhile, Facebook’s Mark Zuckerberg recently purchased Instagram, from which a bunch of French dudes spawned Boobstagram. Their tagline: “Montrer ses seins sur le web c’est bien, les montrer à son médecin c’est mieux.” En anglais: “Showing your boobs on the web is good, showing them to your doctor is better.” All this is supposed to encourage young women in particular to be ‘aware’ of their breasts and ‘prevent’ breast cancer. In the translated words of les gars de Boobstagram, “Glamorous, audacious, original, whatever the means, as long as the objective is fulfilled: To stay alive.” Très noble, dudes. But, je suis désolée to tell you that we don’t actually have any tools as yet to prevent breast cancer. D’accord, c’est domage, but, hey, c’est la vie, n’est-ce pas? Also, while I was unable to find any concrete statistics on this, a somewhat cursory search of the web’s response to these countless images of young female cleavage suggested that it has mostly provided another source of tit-illation pour les dudes. If you think I’m biased in that assessment, Casey Chan of Gizmodo wrote a brief piece about it, headlined, Boobstagram Is How You Will Spend the Rest of Your Day. In it, Chan, remarking on why Zuckerberg purchased Instagram, says that Boobstagram “might be the reason why Zuck splurged a fresh billi on it. It might be the reason why Instagram exists. It might be the reason why we exist.” There is no mention in the piece, nor in the comments following it, of breast cancer. Nuff said.

I briefly considered uploading this image on Boobstagram, but I was too busy reorganizing my sock drawer.

Porn for the Cure

If mere tit-illation isn’t enough for you, how about pornography? Okay, well, not exactly, but another recent news item, from the “You can’t make this stuff up” category, reported that last Tuesday, April 24th, online-streaming porn site Pornhub.com [and no, I'm not providing a link] teamed up with “award-winning porn star,” Bree Olson, to provide free breast exams in a bus in downtown New York. Yeah, really. I shudder to contemplate what sorts of awards they dish out to porn stars. And why.

It’s not quite as bad as it sounds. They did have “a team of medical professionals” to carry out these exams, including Dr. David Shafer, a diplomate of the American Board of Plastic Surgery, reportedly voted a “TOP DOC for Botox, Liposuction, Tummy Tuck, and Facelift,” who “was on board to lecture customers on how to conduct examinations of their own and offered his own screening services free of charge.” What a guy. Wonder if Olson is one of his patients. Olson herself told Fox News that she was motivated to do this because the mother of a close friend died in her thirties of breast cancer. Explaining Pornhub’s rationale for the bus, Olson remarked, “They figured, you know, breasts are a large part [no pun intended, I'm sure] of our industry, and the two would kind of coincide.” Heart-warming, isn’t it? One site which reported on this story, called Peeperz — trust me, do not visit — also included a video of a lifelike-down-to-the-tanlines, animated 3D woman-droid performing a breast self-exam. Nice that they’re so public-spirited. And you only need one hand to click ‘Play.’

Meanwhile, Back in the Un-Sexy Land of Cancer…

Aside from the blatantly obvious, one of the things that aggravates me about this boob dross is that, once again, it pushes the prevention myth. Last time I checked, which was earlier this morning, we don’t have anything yet that works to prevent breast cancer. Yes, there is research underway on vaccines. There’s a recent report here, but you have to copy & paste the link to get it to work: http://news.health.com/2012/04/02/early-study-hints-that-breast-cancer-vaccine-might-work. Other studies are identifying biomarkers that may signal future breast cancer risk and lead to prevention, but it will be years before any of these projects yields something usable.

Another thing that bugs me is that this kind of thing may add more confusion over the whole breast-self-exam issue. There have been many studies published over the last several years suggesting that formal BSE’s don’t work any better than informal ones, nor do they reduce breast cancer mortality. But conclusive assertions are complicated by study limitations, the differences between self-exams and clinical breast exams performed by physicians, and exams performed in conjunction with or without mammograms and MRIs. Not to mention the age of the woman performing the exam, her breast tissue density, and a host of other perplexing items. Perhaps the most coherent write-up I found on the subject this morning is this post written in 2008 by Dr. Susan Love, the week after the Cochrane Collaboration released an analysis of the research that had been done to date. Her post is called Breast Self-Exam: What The Research Tells Us. More recent studies are ongoing, but inconclusive. The bottom line still seems to be that we should be checking our breasts periodically for anomalies, but that we don’t have to do it formally. And if we’re not sure what we’ve found, we should see a doctor.

And in the meantime, last October, GE obtained FDA approval for new technology that provides contrast-enhanced spectral mammography. Like other contrast imaging, it requires the IV injection of a contrast substance, but evidently, unlike CT scans and MRIs, fewer images are needed, are done more quickly, are analyzed immediately, and will ultimately be less costly than CT or MRI imaging. Efficacy studies have demonstrated improved clarity, especially in dense breast tissue, over conventional mammography, but it was difficult to find clear information about longitudinal comparisons. CESM has recently been launched at the Pink Lotus Breast Health Center in Beverly Hills. In this video, Dr. Kristi Funk explains that this technology could eliminate the need for follow-up breast MRIs after a suspicious diagnostic mammogram, but does not suggest that it will replace screening mammography. She recommends it for high-risk women, those who are BRCA positive or have dense breast tissue. Because it can be done immediately after a diagnostic mamm, in about ten to fifteen minutes, and significantly enhances any cancer lesions in the tissue, waiting times for results are reduced and a plan for treatment can be worked on right away.

Another imaging technology being developed is called photo-acoustic tomography, which can see cancer cells long before a discrete tumor forms, and requires no radiation at all.

For now, we can all hope that these kinds of tools will become more widely available. And genuine prevention would be nice, too. We can also hope that someday, prurience peddlers and pink-washers will not keep encouraging everyone to mistake boob awareness for cancer awareness, and that sanctimonious legislators will get over this slut obsession, admit that it takes two to have sexual intercourse, and put a Trojan on their power trips. So far, misogyny has not been proven to prevent pregnancy, poverty or cancer.

I’m going to flush my browser history now. With sulphuric acid.

This past week has been a varied one, to say the least. I’ve just finished the first of my two weeks off from work, and while I’ve enjoyed much of it, it has hardly been restful.

On the face of it, there was nothing inherently unrestful about the few plans I had made for the week. It’s just that life decided to throw a few several spanners into the works. And my plans ended up including more challenges than I could have anticipated.

No Good Deed Goes Unpunished

First, I set myself the task of starting a blog for METAvivor. This project grew out of a desire to honor the memory of my friend Rachel, by contributing something useful to an organization she believed in and supported. Her post Trying to Stay Alive on Two Percent, includes an essay by guest-blogger CJ Corneliussen-James, president and founder of METAvivor. The two percent refers to the meager percentage of all cancer research funds that are devoted to all Stage IV cancers, to treating it effectively once it has been diagnosed. One of the primary missions of METAvivor is to raise money to fund research that directly addresses metastatic breast cancer.

I don’t have the odd fifty or a hundred thousand dollars laying around, else I would have gladly donated it to METAvivor. But I do have a useful commodity — namely, a certain amount of geekitude — that I was happy to offer. Thus, after due discussion with CJ, I agreed to help them launch the METAvivor Blog.

I expected to perform a bit of laborious wrangling with WordPress and my webhost. What I didn’t expect was that, during my first try, somehow the WordPress platform didn’t load properly. Plus, one of the plugins that came with it blocked the ability to leave comments. Plus, my webhost experienced some unexplained server crash, which prevented thousands of North American bloggers and website managers from accessing our blog and site email, databases, etc. and so forth, for three very long days. Finally, after spending untold hours trying every geek fix I could come up with, I had to completely deactivate the first launch attempt and start over, from scratch, with a slightly different domain name. Words cannot express the metaphorical hair-pulling this entailed. However, the second attempt worked. I just couldn’t check the blog’s emails for a few days, but at least I could sign in to the blog dashboard. And Facebook was still working.

Fasten Your Seatbelts…

So, that was the first three days of my vacation. Then, I had to hurry up and pack to go away to Nantucket for the weekend, to partake of the annual Daffodil Festival Weekend. This journey was planned with a sister breast cancer veteran, Cindy, who grew up on Nantucket. We are both Massachusetts natives in fact, although we both now live in other parts of New England. A friend of hers who still lives on the island generously provided us with round-trip ferry tickets and a place to stay.

The Daffodil Festival is timed each year to coincide with the blooming of said flower, which grows in profusion on Nantucket. Except this year, southern New England experienced its daffodil days about three weeks early. So, on Nantucket, actual growing daffodils were thin on the ground, but fortunately, there are silk daffodils, and millions of them were employed to decorate the classic cars, hats, people and dogs that participate in the parade that starts on Main Street, and culminates in a massive tailgate party with all manner of picnics and refreshments.

However, first we had to get to Nantucket. The sun was shining, but our ferry ride was beset by gale force winds. Which means the water was choppy. And there are no seatbelts on ferries. The one good thing to be said was that we were on a high-speed ferry, which meant that instead of the usual three-hour agony, our trip took only an hour. But it was an hour of heaving and fog and huge waves lathering the windows. And the early-warning symptoms of incipient seasickness — a bit of vertigo and a headache that makes you feel like the top of your head is going to explode. Sigh. The photo below was taken from the ferry window. It’s as good a metaphor as any for the ups and downs of this past week.

Blessedly, our dear and generous hostess took us out for dinner that night, to a splendid restaurant. And the next morning, we visited her local health club, and got to soak all vestiges of our turbulent transport in the hot tub. Ahhhh.

Next came the festival itself. Lots of color and local characters, beautiful classic cars, and the odd gale force winds, blowing off the cold water, which had everyone holding their daffodil hats while buttoned up in fleece and quilted jackets. Plus an encounter with an unpleasantly officious parade organizer who was bent on ruining our picnic. We didn’t let her, but it was a near thing, involving a sensible parade official, a politely cheerful police officer, and a lot of private cussing.

Finally, we finished our picnic and found our way to a flower shop, to get a few memorial bouquets. When she was just nine months old, Cindy and her eighteen-year-old mother were among the 34 passengers and crew on a small plane that crashed in trees near Nantucket Airport one August night in 1958. Cindy was one of the 12 who survived. Her mother was among the 22 who did not. Years later, Cindy researched and wrote a moving book about the crash, called Out of the Fog. We placed one bouquet at the memorial plaque honoring all those who died that night. Cindy placed the second on her mother’s grave.

Later, after a much-needed nap, our hostess gathered some old and new friends to her home for a cookout. It was too cold to hang out by the fire pit, so we scarfed up dinner mostly inside. One of Cindy’s old friends at the party was a woman who was making her first social outing since finishing chemotherapy for lung cancer. She was in the midst of radiation and was scheduled for surgery to remove one lung. The other lung was, so far, okay. Cindy and I suddenly found ourselves in an impromptu cancer support session. Cancer is cancer, after all, no matter what kind, and we were happy to listen, ask informed questions and share that instant camaradery that occurs among members of the Club.

After dinner, my back insisted that I get off my feet, so I found myself unexpectedly snuggled on the couch by our hostess’s very active two-year-old grandson, who was nursing one of those perennial colds that small children seem to have. Somehow, he decided that, for a time, hurtling from one room to the next was not as much fun as looking at a coffee-table book of photographs of humans and their pets, with me providing narration. The photos were taken in countries around the world, with all kinds of people and all manner of pets, from ponies to peregrine falcons. Naturally, this involved a lot of ‘why’ questions from my rapt young companion, which I answered as creatively as I could. I felt a bit like Scheherazade.

The next day, we got up early, to begin the long and complicated journey home, from a last walk down Main Street, to the ferry ride, to the drive to the parking lot where I’d left my car, to our parting and respective car trips home — she to New Hampshire, me to Rhode Island. It was, mercifully, less windy, and once we got back to the mainland, it was warmer, too. By the time I got home, I had a sore throat. The next morning, I had my book-browsing companion’s headcold, and spent the following two days in bed.

Emotional Weather

Oddly enough, the most unexpected part of this past week was not the roller-coaster of the events themselves, but the emotions that arose with them. After working my way through the cyber-adventures involved in launching the METAvivor blog, I found myself missing Rachel and grieving for her all over again. I found myself burdened by unwelcome knowledge about cancer’s toll, by the simple awareness that my geekitude was welcomed by CJ partly because she was relieved to have help from someone who is not living with mets herself. I can’t say I was totally surprised by my feelings, but I was unprepared for their acuteness. They followed me to Nantucket. They were with me while Cindy and I listened to her friend describe her lung cancer experience. They multiplied for us both while she and I put together the memorial bouquets and visited the grave sites. On our way home, we both agreed that perhaps we’d needed a much quieter, simpler weekend, that this one had not provided enough respite from loss and cancer and heartache. What should have been a lark was more of an endurance test.

Sounds a lot like life, doesn’t it?

The Long and Winding Road

Despite rumors to the contrary, I don’t get paid to spread snark — and what I like to think is the occasional trenchant commentary — throughout the land. I wish! No. What I get paid to do, four days a week now, is to work as a physical therapist for a home healthcare agency.

It wasn’t my first career. When I started down this road, I was in my thirties. I had recently finished my bachelors degree in writing, going to school part-time while I worked full-time, and I was working as an editor for a small, non-profit feminist quarterly magazine (now defunct). Ronald Reagan had been reelected, so we had tons of stuff to write about. It was in many ways my dream job. But, like many of my previous jobs, it was a lot like herding cats and it involved endless meetings. One day, I woke up realizing I had developed a severe and what would turn out to be a life-long case of meetingitis. Somehow, my notions of changing the world and helping people seemed to be unfulfilled by spending hours hashing out the meaning of collectivism while editing atrociously-written and sometimes hand-scrawled submissions. I guess I got a little cynical. I wanted to do something more concrete, more hands-on, more tangibly helpful to someone. And so, I went back to school, took more science classes and eventually got accepted into grad school for physical therapy.

All this and health insurance.

A lot of you have had physical therapy somewhere along the line, either during your cancer adventure or for some other reason, like the odd sprained ankle or back strain, probably in an outpatient clinic. I did that kind of PT for several years myself, had a good time, met a lot of nice people, learned a lot.

But there was always something about home care that drew me. Occasionally, I suspect that I was just a glutton for punishment. Mostly, it’s because my mother had home care for the last five years of her life, so I got to see its strengths and pitfalls up close and personal.

Home care was my second PT job after grad school, after a stint in subacute, inpatient neuro rehab, the serious stuff, the post-brain injury, profound stroke kind of stuff, the teaching people how to move again from scratch kind of PT. And I loved that, too. And it was a good training ground for home care PT. So I did home care for about four years, then, not by choice, had to take a side trip to outpatient, orthopedic rehab, and then got to come back to work for my old home care agency. And here have I been ever since.

Working in home care is not like any other kind of PT. You’re not stuck in one place, for one thing. You get to drive around and you get really good at reading maps and following directions. After a while, your car starts to look like an office on wheels. You meet people’s dogs, cats, parrots, horses, and, around here, you may encounter flocks of unthreatening but wild turkeys and geese, several cows, and assorted bunnies and red foxes. You’re also meeting people who’ve just had something traumatic and life-changing happen to them, who’ve just come home from the hospital after surgery, heart attacks, falls, fractures and cancer. You don’t usually have any other colleagues in there with you, no staff of nurses, doctors, social workers or nurses aides to help you out. You’re on your own, so you have figure out what’s going on as best you can. You ask a lot of questions, listen as well as you can, and try to determine what you can possibly do to help this person, who is hardly at his or her best, to feel better. Later, you might decide you need to call in the troops, and contact their doctors to make sure that a home care nurse or social worker or nurses aide comes in to help sort things out.

You do a lot of things that aren’t strictly like standard physical therapy. You listen to heart rates, and lung sounds, and blood pressure. You try to figure out if your patients are taking all seventeen drugs they’ve been prescribed, and what all these drugs are for. There’s almost never just one thing wrong. You need to know if they have diabetes or hypothyroidism or a pacemaker. You need to know if they have anyone who can help them get to the bathroom or wash themselves or buy groceries or take them to their doctors’ appointments. You need to move furniture sometimes, so they don’t trip over something and hurt themselves again. You need to figure out if they’re with-it enough to be safe on their own. You need to persuade them to let you get their thirty-three scatter rugs off the floor. You need to figure out if their spouses or daughters or grandchildren are up to the task of being caregivers, temporarily or forever. You need to make sure their surgical incisions are not bleeding or infected. Most importantly, you need to determine whether they are capable of recovering. The old saying, ‘you can lead a horse to water, but you can’t make him drink’ is a very pertinent concept in home care.

Then you have to write all this up, in very specific and seemingly endless ways, so that insurance companies will pay for your services.

Sometimes, a lot of times, you meet people whose lives are a wreck, who have no family, who live in squalor, who are angry and distrustful, who are poor, who are delusional or have serious dementia, who are addicted to alcohol, who have saved every issue of National Geographic for the last forty years and have them stacked and piled over most of their available floor space. Sometimes, no matter what you do, you can’t help them, because they are incapable of helping themselves. But you still have to try. Sometimes, you go in and find them on the floor, and you have to call the EMT’s and send them to the emergency room.

Sometimes, your patients die.

Sometimes, you feel like you could write an angry treatise on what’s wrong with our healthcare system.

Sometimes, everything goes well and you help people get better.

When you’ve lived with post-cancer-treatment fatigue and brain fog for any length of time, sometimes you forget that you have legitimate reasons to feel exhausted at the end of the day. Sometimes you don’t give yourself enough credit for what you actually manage to accomplish before you crawl home and collapse into another stupor. Sometimes, you forget to be grateful you can work at all, and pay your bills with less than your former full-time wage, and the hell with the housework because at least you have a roof over your head and can walk upright without an assistive device.

Sometimes, you really need a vacation. Mine starts next Tuesday.

Do you give yourself credit for all you do? Are you too hard on yourself sometimes? Have you ever had home care?