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Friday, January 31, 2014

Monday, January 27, 2014

The balancing act

Last week, I read some preliminary results for the chemo protocol I did. (Though the drugs I got have been in use a long time, the combination I did currently still in clinical trial). They made me cry. In a very good way.

See, over the last few weeks I'd been doubting my decision a bit. Thinking that maybe I should have gone for the current standard of care, which is harsher, tougher, meaner. More long term toxicity, in that it is damaging to your nerves, and puts you at risk for other cancers. More cruel, in that there's a 3-6% your hair doesnt grow back. (Seriously? Wtf) That scared me a lot.

So I cried tears of joy when I read that the prelimary results were that my protocol was extremely effective.

There's a weird thing about statistics and a cancer diagnosis. A balancing act. Everytime a new stat appears, it goes on the scale in my head.

When I read the good news about my chemo protocol, I had a few minutes of basking in relief and happiness. And then the scale popped up. These results are only based on three years. And how do these numbers stack up against the ones that terrified me a few months ago?

My extremely unscientific way of thinking about it involves one of those old timey scales with a little gold dish on each side. Good numbers go on one side, bad numbers go on the other. Every time a new number comes to light, my goal is to make the scale tip in favor of the good side.


Sometimes I am successful. Sometimes I'm not, and I bite an Ativan in half and try to chill the fuck out. Even if I can tip the scale in my favor, the one overriding number knocks the whole thing off kilter: my chances of ever getting cancer at age 28 in the first place. .05% according to Dr. Susan Love. Add in the liklihood of me getting cancer after Matt also having had cancer in his 20s, and...well, you get my drift. The small odds become less comforting when you're living in a world of tenths of the percent.

So. Well. Is it all just random? I guess. Is there such a thing as luck here? Who knows. There's certainly no control. Just a winnowing a way of percentage points. I did chemo to shave a few off. Radiation knocked off some, herceptin even more. The kale I consume with abandon is supposed to do its part, along with the low dose aspirin, and the mushroom capsules. 

A couple days after reading the promising results about my chemo, I saw another article. This one had a terrifying title, that I won't repeat here. On to the scale it went, and the dance began again.

It's a numbers game, in some ways. Survival, but also feeling okay. Feeling less scared. It's all about numbers. I'm sure I don't have to tell you that I suck at math.

Note: I purposefully did not link to any survival statistics or results or studies, as they can be an anxiety trigger for many, including myself

Wednesday, January 22, 2014

Cubism

Yep, forgot my prosthetic today, so making do with a crunched up paper towel stuffed in my shirt.

Hoping that small, angular left boobs are in for winter 2014.

Tuesday, January 21, 2014

Please Vote for Me

Dear readers, if you have a moment, please vote for my video for the Amazing Grace short film prize. Click here to see the contest page. And if you have a few more moments, check out the other wonderful videos in the contest. You get three votes...I will only demand 2.5 of them.

Sunday, January 19, 2014

Saturday, January 18, 2014

The Expectation

Can we just talk about inspirational cancer survivor news stories for a second? Because there are an awful lot of them. You know the type: Tough ass person gets cancer. Mainlines their chemo. Says fuck you, death. Competes in back to back triathlons, while raising research money, a few months later. Is an inspiration to us all.

Great story, sure. But a true one? I don't know. I think there's a lot that gets left out. I think there's a lot of pain in that story. I think they are a lot of tears, I think there's anger, and lots of being fucking pissed off, and screaming. A lot of fear, of self doubt. And I'm pretty sure there's a hefty dose of either constipation or diarrhea. Sometimes both. Fun!

But something tells me the diarrhea story doesn't make the news. (Unless your newscaster is Melissa McCarthy....if only!)

Even less likely to be shared than the diarrhea story, is the dying story. When someone, a plucky heroine or a determined hero, doesn't "beat cancer," despite having the "right" attitude, diet, mindset. When despite the toughest chemo, the greenest kale smoothies, and the most mindful mindfulness meditation, the person dies of their disease. I think there's a feeling of, if you're tough enough, if you want it enough, you will survive on sheer will. Anyone who doesn't just doesn't have their head in the game.Yeah, no.

In the beginning, I told myself that I refuse to die from this. That's all well and good, but now I know that what I want here has pretty much nothing to do with the outcome. That I can and will do everything I possibly can, of course. But ultimately, it is not in my control.

I guess that's what it is, isn't it? Why these stories are so prevalent? Because they illustrate the wrenching back of control of the body. In a big way. But is it just a perception, or reality? Depends who you ask, I guess.

Is it a huge deal when a champion curler makes it to the Olympics after her bone marrow transplant? Hell yeah. That's fucking awesome. But isn't it also huge when your knitting-fanatic support group friend is able to pick up her needles again? When your chemo ward pal has a day when his pain is under control? I say again: HELL YES.

It's a BIG FUCKING DEAL when you get back something that you lost. For me recently it's been the ability to lift my arm straight up in the air. I know that sounds like nothing. But it's taken me a year to get here, and I'm damn proud of myself.

There are a few stories I've come across that buck the cancer-survivor-as-ass-kicking-saint trope. One is the memoir Cancer Made Me a Shallower Person. Another is the movie 50/50. (The trailer has a sour hint of inspirational-ness...ignore that)



Both of these do a good job of telling the truth about the banality of it all. And they celebrate that. That doing whatever you goddamn well please is enough.

Some people might wonder what the harm is of all these stories. Or think that everything might be too depressing if we didn't have them. Maybe. But consider this. When discussing this topic, one friend said, "I feel like my family is waiting for me to do something inspirational." And isn't that the whole thing? She is getting through this in her own way. That should be the end of it. No need to cap it off with climbing Mount Everest, or winning American Idol, or whatever, if that's not what you do.

Thursday, January 16, 2014

Small thing/Big thing

Today I did a small thing that felt like a big thing.

Today I held the pole on the PATH train with my left hand.

Why is this important? What does a hand have to do with a breast? Well the hand, and even more so the arm, have a lot to do with the pectoralis.The muscle that's been cut, stretched, radiated, and then cut and stretched some more over the last year and a half.

I first grabbed the steel pole with my right, like usual. And then thought, no. As the fingers of my left hand curled around it, I had flashes of hard stops and wild turns that would throw me around the car, tearing and damaging the delicate muscles on my left as I hung on. Seats opened up at the other end of the car, but they were taken before I could move.

I remembered how, in between surgeries last summer, my surgeon told me to keep my hand in my pocket. "Don't use it for anything, not even typing," he cautioned, for fear of opening the delicate incision on my chest. I was one enthusiastic gesticulation away from having to wear a restraint. I followed instructions, but the wound re-opened anyway.

I held the pole low, because even though I've recently regained my ability to raise my hand up high, the way I would in school when I knew the answer better than anyone else, I am afraid to. Afraid of violence from outside, afraid of how to hold on. Of how holding on could hurt me.

These thoughts distracted me from my book. All I could do was stare at my wrist, my thumb. What is supposed to be my dominate hand, made timid.

The ride was smooth, and nothing happened. Of course. Sometimes it's hard to know when you might be okay.

Sunday, January 12, 2014

The report

I'm home again. Week one of the trial was uneventful, at least medically speaking. (But if we're speaking of delicious dinners, and hating the DC bus system, it was very eventful.)

I had very little in the way of reaction to the stuff I got, whatever it was. (I have an urge to call it Mystery Meat, for some reason.) A little foggy, a little headache-y, and two swollen injection sites that looked like little bites.

I found a thread on a message board for women participating in this trial. Several of them bemoaned their lack of side effects. They were sure that it meant that they were in the control arm of the study. And who could blame them? Throughout cancer treatment, you accept the hair loss, the sickness, the burns, as the tax for getting well. Killing cancer has a price, that's what we learn. So when confronted with a potential treatment that has none of those, we assume it isn't real. Kind of like, and I know I've said this before, when I was a teenager and judged my skincare products by how much they burned my skin. The pain meant that it was working.

But I know now that it's not true. This week I raised my left arm up straight and tall. It was the first time I'd been able to do that that in over a year. I did not get this point from pushing my arm up till it hurt. I did not have painful surgery to release the scar tissue that was holding me down. No. I went to physical therapy, and slowly and surely, got most of the way there. And in the last couple of weeks, began massaging my mastectomy scar. The massage gently loosened everything up, so I am now able to raise my arm up those last ten or so degrees.

So, it doesn't have to hurt. Not always.

For more information on peptide vaccines, check out this article from MD Anderson.

Wednesday, January 8, 2014

The big day

In a few minutes I'll get my first peptide vaccine (I hope!). The nurse decorated my leg in an appropriately celebratory way, I think.

Monday, January 6, 2014

Epiphany

This time last year I was finishing my first week of radiation. Today, I traveled to DC to begin a clinical trial for a breast cancer vaccine.

This morning, the three of us, me, my sister, and Matt, woke before dawn to set out. Matt left us at the station, where the fog was heavy. Newark was the inside of a cloud. Once on the train, we sped through the state, fog turning to liquid and dashing against the windows.

Somewhere outside Trenton, we passed a graveyard and I didn't hold my breath. I breathed deeply, imagined sucking in all those souls floating around. Maybe they would give me luck, or something, and push me away from the control arm of the study, and towards the real medicine.

What I get could be one (or none) of two promising peptides, whose aim it is to teach the body to search-and-destroy the type of cells that abounded in my tumors. (That's an oversimplification of course. If you're sciencey, read the real details here.)

A few days ago, I realized that today, my start date, was also Epiphany, or Three Kings Day. It's the kind of holiday that the churches in Jersey City (probably) have parades for, with statues and canons and things. The various international celebrations of this holiday, which commemorates the arrival of the Magi to the baby Jesus (OR the baptism of said baby, depending on who you ask) are numerous and fascinating. 

We never celebrated this holiday in my house, but I feel some connection to it today. So many odd coincidences here, that hearken back to my murky memories of the details of the three kings and their arrival. Our travel to the site, through fog and rain and wind, the many modes of conveyance (car, train, taxi, bus); the wrong turns. The three dots the nurse gives me on my thigh with a surgical pen, to track any reaction to the injection. One dot gets the peptide, the second saline, the third an alcohol swipe. Three gifts, of unknown, and possibly dubious, helpfulness.

And the irony, of course, of starting this trial on a day called Epiphany. I don't, and won't for years, know if what I am getting is real. The study is blind, and I am blind. I avert my eyes during blood draws and injections, focusing on a stray thread on the nurse's lavender sweater.

After giving six tubes of blood and taking two more needle sticks, she sent Lizzie and me on our way. We inched back to the hotel on the Circulator bus, and cocooned in the hotel for a few hours. I felt a little weak, from giving a bit of blood I guess, or the nerves. 

As night falls, the arctic air curls in for what they say will be the deepest freeze in decades.

Thursday, January 2, 2014

Dream Journal

First dream of 2014:

Being forced to be an astronaut, and going to space with George Clooney (sometimes it was changed to Ben Stiller). There was some kind of plotting going on that I was worried about, so Wu from Deadwood was my emergency contact. I went shopping for bras just before the launch. I wondered if astronauts get to change their underwear.