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November of last year found me living as best I could with several health issues, the most debilitating of which stems from never having recovered from a serious viral infection in 2001. I’ve been diagnosed with chronic fatigue syndrome, a little understood and much-misunderstood illness. It keeps me virtually housebound. For the most part, I’ve made peace with feeling sick all the time. In fact, recently I’d been thinking that I could be OK with the prospect of spending the rest of my life with flu-like symptoms as my constant companions.
Then, totally unexpectedly, I was diagnosed with breast cancer. It was discovered by chance when a routine test not associated with my breasts showed a slight shadow on the left one. My doctor ordered an ultrasound, and it revealed a lump in a different location from the shadow. A biopsy of the lump led to the diagnosis: invasive ductal carcinoma. “Invasive” means that the cancer is no longer contained in its place of origin (compared to the more favorable — and more common — diagnosis of DCIS: ductal carcinoma in situ).
I was told I needed a lumpectomy, and if the lymph nodes removed during surgery tested negative for cancer (thankfully, they did), the recommended treatment would be a course of targeted radiation and five years of hormone therapy (the latter in the form of estrogen-suppressing pills). I’ve completed radiation, although I’m still experiencing one of its side-effects: fatigue (which makes my pre-existing illness harder to cope with). I’m also experiencing side-effects from the hormone therapy, but I’m hanging in.
Except for what I’ve been told by people who’ve written to me about their experiences with cancer, this was a new medical arena for me. I’ve learned that it’s a world onto its own in many ways. At the medical center I’ve been going to for over 20 years, cancer patients even go to a special set of buildings. Nothing was familiar to me there. It’s been a disorienting experience.
As I tend to do, I’ve been writing about it. Although this piece focuses on breast cancer, much of what have to say applies to chronic illness and chronic pain in general.
Hone your waiting skills.
I’m not referring to sitting in waiting rooms to see doctors, to get tests, or to receive treatments (although there was a lot of that waiting too). I’m referring to waiting in your mind — and it was not a pleasant experience. Waiting for test results and waiting to hear what the next specialist in line has to say is particularly hard when you’re housebound, because there are fewer ways to distract yourself to help pass the time.
First, I had to wait for the test results that led to the need for the biopsy. Then I had to wait for the results of the biopsy. Then for an MRI. Those results led to a consult with a surgical oncologist who said I needed a lumpectomy. Then I had to wait more than two weeks after the lumpectomy for the results of pathology tests on my lymph nodes and on tissue samples from the surgery.
And, even after discussing the pathology results with the surgeon, I had to wait to hear what the next specialists in line had to say (the radiology oncologist and the medical oncologist), because their interpretations determined what treatments they’d be recommending. And, of course, now there will be “chronic waiting” to see if the cancer returns.
No way around it: there’s been — and will be — a lot of waiting.
How have I been keeping anxiety and worry at bay while I wait? I’ve been trying to keep my attention in the present moment by using practices such as “drop it” from my book How to Be Sick. For example, when I realized I was feeling anxious during that long wait for test results from the surgery, I gently but firmly said to myself “drop it.” Then I immediately turned my attention to something pleasant in the environment around me — perhaps the sight of leaves blowing in the wind outside my window or the physical sensation of a warm ray of sunshine on my skin. I engaged in this little exercise many times.
In addition, practicing equanimity has been extremely helpful. Equanimity refers to a balanced state of mind that accepts with grace that life is a mixture of pleasant and unpleasant experiences over which we often have little or no control. Having to wait so much has sometimes given rise to a scary feeling of lack of control over my life. When this happens, I remind myself that there’s a lot about life that I don’t control — as is true for everybody. Denying this or trying to mount a militant battle against it only makes an unpleasant situation worse. And, I’ve had to remember that life is not always fun; unpleasant though it may be, waiting is sometimes the order of the day.
I’ve also been cultivating self-compassion. When I feel overwhelmed by the desire to have all my questions answered right now, I speak silently or softly to myself in a kind voice. When I was waiting for test results, I said something like, “It’s so hard to want the results right now, but not have control over when they’ll be available.” When I was struggling to get to sleep one night because of anxiety over a crucial consult the next day, I said to myself, “Rest peacefully, sweet body; rest peacefully, sweet mind.” And now, I sometimes say, “It’s really tough to feel so uncertain about the future of my health.”
Speaking to myself in this way makes it easier to wait, partly because it helps me acknowledge one of life’s truths — the lack of control over so much that happens — and partly because it heightens my awareness of others who are in the same situation, and this helps me feel less alone.
The Internet can be foe … and friend.
Spending hours online can lead to information overload (and worse: conflicting-information overload!). It’s good to take a deep breath once in a while and, a friend likes to say, step away from the computer. When I was first diagnosed, I spent hours online, jumping from this page to that page; it left me feeling overwhelmed and utterly exhausted.
I can best illustrate how crazy this could get by sharing one experience. A crucial question that would be answered at my post-surgical appointment was whether the surgeon had obtained wide enough “clean” margins around the lump (“clean,” meaning cancer-free). If not, I’d have to have the lumpectomy redone, or perhaps have a mastectomy.
In preparation for this appointment, I was reading about this topic on the web and learned that there’s not a bright line rule on what constitutes a clean margin. Some surgeons want to see 2 mm, others 1 mm, still others are satisfied with less than 1 mm. What? No bright line rule? This did not sit well with me who’s been trained as a lawyer!
In a mini-panic, I put down my laptop, ran into the living room, and announced to my husband: “We have to get a second opinion on clean margins!” He looked up from what he was doing and calmly said: “Second opinion? We still don’t have a first opinion.” At that point, we both started laughing, and I realized it was indeed time to step away from the computer. (As it turned out, I didn’t need a second opinion. The surgeon obtained more than adequate clean margins all around.)
No doubt about it: the internet can add a layer of anxiety to an already stressful situation. But it can also be tremendously helpful. A few days before the lumpectomy, into my email inbox came a supplementary pathology report on the biopsy. It said that the lump was estrogen-receptor positive (ER+). My heart started pounding, and I thought: “Oh, no. That sounds bad.” Having no one to ask, I turned to Google. I learned immediately that being ER+ is a good thing because there are medications to treat it — drugs that suppress estrogen production and, by doing so, make a recurrence less likely. Thanks to the internet, in the space of a couple of minutes, I went from high anxiety to a big sigh of relief.
It can be hard to escape “cancer consciousness.”
It seems to come at me from every angle. I’ve taken to calling it “cc.” Whenever I think I’m about to get a day’s break from thinking about having breast cancer, something always seems to put it front and center again. I’m not criticizing — everyone has good intentions, and I realize how fortunate I am to be receiving such excellent medical care. But sometimes I long for just one day when I can put cc aside. So far, those days have been hard to find.
Cancer consciousness might show up in the form of a phone call from my medical provider, setting up an appointment with the next specialist in line (every appointment seems to spawn two more). Soon thereafter, I’ll get a multi-page “new patient” form in the mail to fill out and bring to the appointment. Once there, I’m given a packet of reading material to take home with me. I already have a stack of papers at home that’s over an inch thick.
In addition, every new appointment triggers at least four communications from my medical provider: a reminder letter in the mail; a reminder phone call; a reminder email; a phone call after the appointment, asking if I got that reminder phone call before the appointment! With all these reminders and follow-ups coming in, it’s hard not to always have cancer on my mind.
One night, in the few weeks after the post-surgical appointment and before radiation was due to begin, I turned out the lights, thinking, “Ah, tomorrow I won’t have to think at all about cancer. What a relief!” But when I opened my laptop early the next morning, there was an email from my medical provider, instructing me to click on a link to receive important information. And there it was: a 30-minute interactive animated program explaining everything I needed to know about radiation. When the automated voice said, “I know that being diagnosed with cancer can be overwhelming, but you’re not going through this alone,” feeling quite alone, I closed my laptop and thought, “Later with this.”
Then there are family and friends who want me to keep them informed. One late afternoon when I was feeling utterly exhausted from yet another day of cc, I told myself, “That’s it. No more thinking about cancer today.” Then the phone rang. It was a good friend, calling to find out the results of the post-surgical tests. And so … back to cc.
Sometimes, I confess, cancer consciousness is of my own making: something I’ll hear or read sets me off on a Google search, tracking down information. I also seem to “drift” to breast cancer sites. A few weeks ago, instead of doing something fun on my laptop, like browsing through nature pictures, I found myself on a forum at breastcancer.org where women who’d successfully completed treatment were posting that this was the very worst time for them because they were no longer doing anything pro-active to fight cancer, and this fueled their fears that it would return.
Here I was, five years from the completing treatment, reading about how I was going to feel a whole lot worse once I was done. Yes, cc of my own making that served no constructive purpose and wasn’t even kind to myself. And, of course, writing about it, as I am here, heightens cc, but writing appears to be how I respond to my experiences, especially to adversity.
As I said, I’m not criticizing these people (not even the automated one…not even myself). But it’s still hard. It’s been helpful to make light of it, as I’ve been trying to do at times in this piece and as I’ll occasionally do with my husband by turning whatever we happen to be doing into a cc moment by saying something like, “Don’t forget; it’s all about how I have cancer!” Dark humor, I know. But it helps both of us cope. That said, I’d sure like to have more “cc-free” days. So far, they’ve been few and far between.
Be prepared for an emotional rollercoaster ride.
I find it hard at times not to be tossed about emotionally by what’s happening. I’ve seen a dizzying array of physician assistants, medical assistants (yes, they are different), technicians, nurses, fourth-year medical students, residents, Fellows, and oncology specialists.
Apparently, all of them see a dizzying array of people too: It was hard to keep calm when a nurse entered the examining room during my pre-surgical appointment the day before the lumpectomy and announced that she was going to teach me how to keep clean the drain they’d be inserting during my abdominal surgery. “Abdominal surgery?” I said with alarm, as the rollercoaster began its descent and my stomach wound up in my throat.
It’s also hard to stay off the roller coaster of ups and downs when every time a doctor gives me good news it seems to be followed by sobering news: “You won’t need chemotherapy…but you will need a course of radiation and hormone therapy.” Then there was this: “Hormone therapy is easy — you just take a pill every day … but you’ll have to do it for five years, put up with its many side effects, and be monitored for bone thinning because the medication increases the risks of fractures.” And here’s my favorite “rollercoaster” moment so far: “Your pathology report couldn’t be more favorable … now let’s look at this mortality table that shows you success rates associated with each treatment option.”
In addition, the physical toll of treatment can throw me off-kilter emotionally. I went from having the luxury of being able to take care of my “pre-existing illness,” to having to disregard it almost entirely in order to effectively treat the breast cancer. For example, radiation entailed taking an hour-long round trip to my medical provider for 21 days on consecutive Mondays through Fridays. That added up to more than four weeks in a row — a lot of “not housebound” for a person who’s virtually housebound by chronic illness. The toll that this and other treatments have taken on my body can spill over to my mind, making it hard to stay off that emotional roller coaster.
In the face of this wild up-and-down ride, once again, I’ve been practicing equanimity and self-compassion. I remind myself that, although this is definitely a not-so-wonderful experience, life will always be a mixture of joys and sorrows. Given what’s going on, it’s understandable that I’m feeling tossed about at times. Right now, what matters most is that I treat myself kindly and make sure I’m not blaming myself for feeling so vulnerable.
***
I’m still near the beginning of this marathon (thanks to my son Jamal for pointing out that it’s a marathon). I hope this was helpful in some way to anyone who suffers from a chronic illness and to those who care about them.
Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.