This past week on my facebook page, we have been collecting all the craptacular pink stuff that floods the store shelves in honor of October, also known as Breast Cancer Awareness month.
Apparently this is breast cancer “season.” And it’s time to party.
Part of the idea of this game is to point out the bizarre inequity of corporate sponsorship of cancer research. People love breasts so companies are comfortable with the cute pink ribbons and their mammaric associations. There is no parity for other body parts that get cancers that are often more lethal, like anal, colon, or pancreatic.
This comment from Denise McConachie sums up the consequences of this inequity beautifully:
Ah yes. Breast Cancer – The Golden Child of the Cancer Family. Her little brother, Colon Cancer, sits back in the shadows, pouting a little, while big sis hogs all the media time and has all the fun parties.
I’ve had both. It’s amazing the difference in the packages of information I got from each surgeon. The breast cancer folder came complete with calendars, notepads, excercises and even a best selling book about breast cancer treatment my surgeon co-wrote.
With the colon cancer… I got a hand drawn diagram of the section they were taking out.
Tags: diagnosis, self-advocacy, straight talk
Posted in Humor, Treatment | 3 Comments »
One of my friends is across the world, fighting for her life right now.
This is now the third time I have talked at length to a young adult facing what may be the end of their life. I am coming to know the unmistakable emotional contours of this event, as they confront the heartbreak of losing all the life they have not yet lived, imagining plans they hadn’t even consciously made go incomplete; the shock of being time-robbed. What young person can envision a life cut short, never becoming the graying future self of daydreams?
As I have been talking to my friend, I feel renewed anger at the popular and grandiose idea that our attitudes determine our outcomes. Even before I joined anything that could be called a Cancer Community, I knew and loved people with cancer. Like other cancer patients, I loathe any accounting of their deaths that describe them as having “lost their battle with cancer.”
I don’t reject the war metaphor altogether. This is most definitely a fight I am engaged in. But I think of the battle with cancer as existing on two main fronts.
There is the physical battle, of course. That is where the chemotherapy, the surgeries, the radiation come in. I know that there are no “good” cancers, but let’s face it. You’d rather have some than others, and much of this comes down to having a cancer that is understood. I have immense good fortune of having a type of cancer that has been well researched and for which, in the last decade, a targeted therapy exists. And while there is definitely some heavy choices we patients have to make about our treatment –– a certain due diligence in working as our own quality control department –– there are only a finite number of treatments, and they don’t always work.
The spiritual battle is more within our province, even though it is more amorphous. There is no scan or blood test to assess how we are doing on this front. The current zeitgeist for positivity is the most popular template for looking at this. As I said, the mental attitude is everything version of it is a crock, as if we could cure ourselves with our thoughts. That’s not positivity. That’s magical thinking.
To me, the better question to ask about the spiritual battle is, “Are you staying true to your best self as you make it through this mess?”
That is the only wholeness we can hope for, as we lose body parts, find our faculties and functions compromised.
Just like a wilting rose casts off its sweetest smell, people facing the end of their life have a chance to reveal their essence. In this sense, many of the people I know who have died from cancer have, in the most profound way, survived.
Tags: attitude, changes, coping, courage, gratitude, grief, identity loss, survivorship
Posted in Survivorship | 9 Comments »
I’m supposed to be almost done with treatment, right? This is supposed to be that rocky but ultimately blissful part where I feel immense gratitude for my survival and start to get pieces of my life back?
I have Stage 1 lymphedema. (Yes, they stage that too. A poor choice in diagnostic taxonomy, if you ask me. Anyone prone to lymphedema is already traumatized from the last disease that they had staged. Why not leave out the numbers and just call it early, middle, and advanced?)
The Barbies don’t have to deal with lymphedema. Their lives are perfect.
I have to go to physical therapy appointments twice a week. I have to wear a ginormous compression bra 24/7 until my lymphedema resolves. I have to do repetitive exercises that make me want to cry from boredom.
This is not getting my life back.
Today I went to see the physical therapist. I got grumpy. Don’t get me wrong: I adore her. She is fabulous.
She was showing me a “self-tickle” exercise I need to do. She told me to do it everyday, fifteen minutes before I get out of bed in the morning. I’m pretty sure I scowled.
It seemed like yet another cancer treatment geared toward the rich, retired, or childless.
My sleep is dysfunctional. I become unfathomably fatigued somewhere slightly past midday. I often have difficulty falling asleep. I have trouble staying asleep because of the pain in my ribs. Most mornings, I wake up with an alarm because I need to get my kids to school.
The idea of getting up 15 minutes earlier for a self-tickle therapy session brought out my inner adolescent. I told the therapist so. I unleashed the litany of annoying things I am still having to deal with, the losses I am facing, the numerous obstacles between me and My Life As I Know It, up to and including this ridiculous compression garment that makes me feel 30 years older because of its gravity-defying, granny bra feel.
“Hm. Yeah,” she said. “Don’t get up early. Maybe at bedtime?”
I wryly agreed that self-tickling at bedtime would be better. She could see I was still in a bit of a funk.
“What are you going to do to get yourself going again?” she asked kindly.
I frowned, but I was resigned. “I’ll figure it out. I always do.”
Not right away, apparently. I left her office feeling very sorry for myself. I am sick of having these lists of rules; of exercise diagrams with their little arrows pointing to line drawings of bowl cut dudes in seventies-era gym shorts; of all the things I have to do to stay out of pain. No hot baths? No massages in my “upper right quadrant”? Compression sleeves every time I exercise, go on long drives or fly? Maybe I should just forget all of this and let the chips fall where they may.
Pleasantly convinced of the injustice of my situation, I strode to the elevator bank with a nice gray cloud over my head. I pressed the button and waited. I’ve spent so long being a good cancer girl, earnestly following all the elaborate directions they give me, even when they are contradictory or unclear. It was all so unfair.
A moment later, a middle aged cowboy swaggered down the hall, closely trailed by a 14 year old girl swinging herself along on crutches decoratively webbed with hot pink duct tape. The father and daughter were joking and laughing.
Then I noticed. She had one leg.
The cowboy dad held a large plastic bag full of gauze and bandages. They were leaving the same oncological rehab clinic I had come from. Piecing the scene together, I suspect this was a new loss for her.
And there she was, laughing.
Nothing like a little perspective to end a good pity party.
Tags: attitude, body issues, changes, daily life, doctor-patient interaction, fatigue, identity loss, parenting, survivorship, vanity
Posted in Survivorship, Treatment | 19 Comments »