Category Archives: cancer

Just Make It Work

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One of the wisest people I’ve talked to is Vicki, the thirty-something patient with cystic fibrosis I interviewed extensively for Life Disrupted. Chapter Seven (“Salient Suffering”) details a conversation we had about suffering:

“For years, people have told her [Vicki] how brave she is, how strong and resilient she must be to endure the many complications of her illness. They are likely referring to her ever-present cough, her intrusive feeding tube, or her very basic struggle to get enough air…Some people assume that by virtue of these physical symptoms, Vicki is somehow naturally equipped to handle them. She disagrees with this all-too-common assumption…She puts up with the disruptions and the bodily complaints because she has to, something perhaps healthy people don’t always consider.” (42)

I had a somewhat similar conversation with Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, for a different project. You’ll hear more about it down the road, but we talked a lot about cancer mythology and the idea that having cancer makes you stronger, or more spiritual, or more ____(insert adjective of choice here).

What if you were already strong before cancer? What if you endure it all because the other option is not enduring it and knowing you might die?

Anyway, I had all of this on my mind this weekend after talking about work with a friend of mine.

“It’s amazing what you can do when you have no choice,” I said. It was a light-hearted conversation about work ethic, but my smile didn’t mean I wasn’t completely serious.

And it’s true. When you have obligations and deadlines it doesn’t matter if you’re overcommitted or tired or would rather get home earlier—you get it done. I think pretty much everyone from all walks of work life can relate to that.

My desk at work is pretty much empty; everything I need is in my laptop or my briefcase. Years of hospital packing have conditioned me to have everything I need to be able to work at all times with me wherever I go. But my office at home is the opposite. I spend more time there (a couple weekdays, most weeknights, and weekends) and it shows. My desk area is the epitome of organized chaos—folders and papers and notes and staplers and binder clips and books and coffee cups litter to desktop, flanked by stacks of folders and more piles of books (and often, dog bones and half-chewed tennis balls) on the floor.

Above the desk hangs a combination magnetic wipe board/bulletin board, adorned with post-it notes, quotes, forms, phone numbers, etc. At the very top is a quote one from one my graduate school professors. It is simple and precise, and I find I need to look up at it every day:

“There is nothing as clarifying as a deadline.”

Writers, I am sure you can relate to this, that you have stayed at your computers until 3am or gotten out of bed when it is still dark and skipped meals and plans and, oh, entire weekends or vacations, to meet your deadline. When you want something badly enough, you make it work, like this writer I’ve followed for a couple of years, who steals every possible chance to work on her writing: before work, after work, and every weekend. Her book recently published.

It may have been born out of a writing workshop, but again this quote is far more universal. Even when it isn’t easy or doesn’t even seem possible, we make our personal definition of a “deadline” work: the mother who was up all night with a sick baby still goes about her day with no sleep; the working parents with crammed schedules make it to the teacher’s meeting and deal with the work consequences when they should be going to bed; the financially strapped student takes on another part-time job while juggling classes and internships and expectations from so many people.

It is amazing what you can do when you have no choice. It is not always ideal and it is not something you can sustain forever but sometimes you just have to take a deep breath, vow not to think about it too much, and plow through it. It could be finishing grad school, or completing a medical residency, or working on a huge client project. Or it could be dragging yourself through the machinations of your day when all you want to do is sleep.

When it comes to health, I agree with Vicki’s sentiment that much of what we do as patients is because the choice not to do it is simply not viable. I do not think moral attributes need to be part of what is largely pragmatic.

Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face. For example, we might not take that sick day when we’re feeling under the weather with “normal” stuff, the same sick day healthy people might take, because we know that while we feel miserable with this cold or headache now, we might really need the sick day for pneumonia or a severe flare. Necessity dictates that we make our decisions based on a different rubric. Sound familiar?

We might totally over-commit in the moment and pull long days when we’re feeling okay because we know our ability to be productive is not in our control when we get worse. How many times have you been there?

I can’t help but think about the time I had to facilitate a three-hour graduate school seminar fresh from a hospital discharge. By “fresh” I mean I bargained for a morning release so I could make the class on time, changed back into the clothes I’d worn to the ER seven days earlier, and had my (very skeptical) mother drive me the few city blocks from the hospital to my campus. In my haste to get my materials together and my exhaustion from the hospitalization I forgot to take off my hospital bracelet, and I know I sounded terrible. It wasn’t ideal and it certainly wasn’t preferable, but I got it done. I knew there would likely be other times in the semester when I wouldn’t be released in time, and I couldn’t afford to take an incomplete in the course.

It may sound like a crazily stubborn thing to do, but I didn’t see a choice at the time. Or perhaps more accurately, I knew all too well what it felt like to really not have a choice, to be stuck in that hospital bed, and it wasn’t an opportunity I was going to squander. Accountability is still important, even when you’re not feeling spectacular. I bet you can relate to that.

In the end, maybe this circuitous post is really nothing more than a pep talk for everyone out there feeling a little overwhelmed or a little unsure of how you will reach your goals but you know somehow you will. When I look at the quotes I’ve collected here, I am glad there are people who have been there who can remind me of that sometimes. Or, you know, today.

National Young Adult Cancer Awareness Week

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It’s spring, which means the disease walk-a-thons, bike races, charity walks, and general awareness campaigns tend to kick into high gear.

As a rare disease patient, I watch these mobilizations with a mix of curiosity, appreciation, and intrigue. That these populations are big enough to sustain such events is, of course, a double-edged sword: so many people are impacted by them that there is strength in numbers, but that those numbers are so high is the very reason for the mobilization.

I had Rare Disease Day, and that was a start for me. People I love (or the people other people in my life love) live with all sorts of conditions, so I find myself sponsoring things like MS bike rides, arthritis or heart disease walks, or diabetes or specific cancer awareness events more and more. I’ve done the charity walk for Children’s Hospital Boston for several years.

But it’s the first year I’ve been aware of the existence of Young Adult Cancer Awareness Week, and I’m interested in it for many of the same reasons I wrote about for Rare Disease Day and many of the same reasons I wrote a book about chronic illness in younger adults:

This is a population whose needs are both unique and overlooked. There are thousands of types of cancer, but the larger universal experiences of getting diagnosed with it and living with it as a young adult are significant. From access to care and early detection to issues of employment and family-planning, these challenges affect so many younger adults across the country.

I had the chance to speak in person with Kairol Rosenthal last week, and it’s largely due to her advocacy that YAWC is on my radar this week. For a more in-depth discussion of young adults with cancer and the similarities they share with young adults with chronic illness, see my review of Rosenthal’s new book, Everything Changes.

Book Review–Everything Changes: The Insider’s Guide to Cancer In Your 20’s and 30’s

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Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness.

So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer In Your 20’s and 30’s, I was excited to see someone else focusing in on the younger adult population…And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted emerged.

“But you’re too young for this!”

How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

On dating, one young woman said, “When I was first diagnosed, I wondered if guys would be disgusted knowing there’s a tumor inside of me. I felt tainted. Of course, I didn’t want a guy to go away when he found out I had cancer, but I felt like it would be natural if he did. Who signs up for that?” (47)

Through these patients, we see examples of people who remained despite what they did not sign up for, and relationships that could not stand the strain. Rosenthal’s own ultimate love story gives solid context—it inspires yet does not overwhelm.

On the idea of surviving, a male patient said, “Once you’ve had cancer, people like to think of you as a superhero, like Lance Armstrong, but I’m no Lance Armstrong. I don’t go for that image. Cancer recovery has become so romanticized, as if this one event suddenly made me a whole different person. I don’t think that’s the case.” (94)

Of course, these are just snippets of the many conversations about family, marriage, death, health care, and other topics that fill the book. Each story is as compelling as it is unique, yet Rosenthal’s voice carries the book. Upon receiving her diagnosis of thyroid cancer she writes,

“My first thought was the opposite of ‘Why me?’ Why not me? Why a fifty-five-year-old truck driver, a nine-year-old in a pediatric unit, or my seventy-seven-year-old grandmother? Of course, me. Why the hell not me? This life is breakable, and I’m no more immune to pain and suffering than the next person.” (3)

Perhaps it is this attitude that I appreciate the most, one that is devoid of self-pity, one that seeks to bring truth to the reality of so many patients for whom the word “survivor” is a loaded term, who do not couch suffering or pain or fear in palatable ways when sometimes they aren’t meant to be palatable.

That isn’t to say the stories aren’t encouraging, insightful, or ultimately inspiring—they are, because they are real. They are gritty, honest, often funny, and more than anything else, they represent the individuality of the patient experience. This is something Rosenthal is keenly aware of, and her awareness—respect, really—of this individuality allows the diverse reactions and adaptations to living with cancer to co-exist so well.

Despite the differences in diseases and outcomes, I found so many interesting parallels between these patients the ones I know from writing about and living with chronic illness. If you’re a young adult cancer patient or know someone who is, you will really benefit from this book and all its resources. More than that, though, the book puts out there a central truth that not enough people know:

There’s no such thing as “too young” for cancer.

Among the many universals in this book, I think many of my readers can relate to that sentiment all too well.