This may seem like a shallow post for my last day of treatment. I should probably be blogging about the deeper meanings of this time. I think my emotions are being processed on a deep, nonverbal level right now. I will surely share the insights I glean from this experience in future posts.
In the meantime, a perhaps frivolous yet meaningful matter that’s taken me 18 infusions to figure out.
What is the ideal fashion for infusion day?
The port is awkward. It’s in my chest. I don’t want to undress to have it accessed. People in chemo are often hairless and need to keep their clothes on and the chill off.
I’ve figured it out, Chemobrothers and Chemosisters.
First, start with a shirt whose neckline can stretch downward to reveal your port.
If you look closely, you can see the plastic wrap over my numbed out port.
But when this stretches down, your neck is really exposed. You feel naked and cold.
So, I knit myself this adorable neckwarmer. It pairs perfectly with the shirt.
If you need a little punk rock vibe to help you feel like a cancer ass-kicker, I suggest pairing it with a leather biker vest.
This would have been awesome with my chemohawk.
And voilà! Easy access without the chill.
It took me 18 infusions to figure this out. Hope you can benefit from this important wisdom.
I am a social scientist. I make my living entertaining questions about what it means to be human.
I have entered CancerLand with the same kind of curiosity I bring to any new world I encounter. Along the way, I’ve distracted my treatment-addled brain by pondering some of the essential questions about who we are.
Like, are people inherently good?
With the unbelievable outpouring of love and support I got from friends, family, acquaintances, and even strangers, I am tempted to say yes.
I know my inclination is based on a few things. My treatment is coming to a close and the memory of the worst parts of it are already starting to recede. I also realize that I am a glass-is-half-full kind of gal. The slights fade for me, and the love rises to the top.
I also know that the full story is much more complex. My adversity invites sympathetic bystanders. My illness is a “blameless” one, invoking greater compassion. I am not a person who has neglected my health and is reaping what I sowed.*
In the internet age, folks share. A lot. But I am not, for example, extricating myself from a domestic violence situation or grieving the suicide of a loved one, both of which would be filled with much more psychological complexity. The unambiguous injustice of what I am facing gives me license to be more open and rally people to my side.
So are people inherently good?
A study reported in Scientific American got me thinking about this question again, reconsidering my optimist’s conclusion. Biologically, we are designed to feel repulsion when we see a sick person. The mere sight triggers an immunological response. It makes sense. We need to preserve our own health and well being.
The findings resonate with the accidental fieldwork I’ve done in the body of a cancer patient: the guarded stares I catch out of my peripheral vision, the quickly masked looks of horror on the faces of people who have known and loved me as they see my unhealthy pallor, others’ constant preoccupation with how I look throughout my treatment.
In my culture, we are urged to visit the sick. It’s called bikur cholim. We are taught that “one who visits the sick takes away 1/60th of his pain.” There are even outlines about how to behave — what is appropriate to talk about and the caution not to stay too long.
Some of the things that make us good people come easily. Others do not. And personal history makes some good deeds easier to do than others.
This suggests that our nature isn’t perfect and that, for a variety of reasons, we often need a nudge toward doing the right thing. Clearly, there are solid survival-related reasons for avoiding sick people. But I suppose what separates us from other animals is that we can rise above instinct toward a better self.
In some ways, it’s okay with me to come to terms with the fact that we are not inherently good. We don’t always instinctively do the right thing. All of us can think back to times where we could have acted more nobly or righteously.
Accepting that as true only makes it more miraculous to have had so many people choose to overcome their fears and be there for me when I needed them.
* I don’t really get into the meritocracy of illness — that is, it becomes irrelevant whether or not somebody’s illness was an expected outcome of earlier behavior or genetics. I’m just saying that these attitudes exist and that it shapes how people respond to you.
I wanted to commemorate my past year somehow. I thought of writing an entry about before and after, but it was too complex and probably of interest to nobody but me.
Instead I made a slide show of my year of treatment. I thought it was going to be emotionally difficult, seeing myself go from healthy to sick and somewhat back again.
What surprised me was how happy this made me. I had tons of pictures of the friends and family who came to help and support us. There are even a bunch of folks who helped out and are not in this slide show. I had so many pictures of my kids looking like kids. I know there were important parts of the year that got left off camera, but seeing how we managed to stick together, with all of this love as a glue, was healing.
The music is “Here I go again” by Danny Salazar. Right after I was diagnosed and we were in that awful waiting stage, my husband and I discovered his band. He was playing in a local dive and we tried to go every week. This song spoke to us, and we got to dance and sing along to it quite a lot in those early days.
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.
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.
