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Friday, February 28, 2014

5 Craziest Things I Did While in DC for my Clinical Trial

- had a hotel room with two double beds. SLEPT IN BOTH.

- snuck into the members only preview at the Phillips Collection. Was immediately spotted.

- was carded at every bar in dc. Apparantly they "card for 35." Whoo!

- watched the sun come up Friday morning, and I wasn't alone...because I was on the hospital shuttle.

- spent 4 hours looking at sequined pants on Pinterest, culminating in purchasing a final sale pair from French Connection.

In other words, I was really living.

Wednesday, February 26, 2014

Vitals


BAM. I'm a vital signs champion.

Congratulations, You're Not Pregnant!

I think I've had more pregnancy tests in the last two years than pizzas. (And trust me, I eat a lot of pizza.)

When I was younger this would have been fine. Good even. I spent many years being terrified of getting pregnant. (I think we've all played that "Where's my period??" game.)  

But now I find it pretty annoying. Everyone's super concerned with the state of my uterus. To the point where I had to talk about condoms in front of my mom at my first onco appointment. As a 28 year old, I was no less horrified than when I would have been at 12.

It doesn't matter if I am in chemopause, or if I tell my doctor I haven't had sex in approximately 3,000 years: I'm getting the damn test. My first day of radiation my treatment was delayed a few hours because of pregnancy test mayhem.

Once, before one of my ER surgeries, I was administered a $99 pee-on-a-stick pregnancy test. Um, there's a Duane Reade like across the street, guys. We don't even have to buy the generic brand or clip a coupon to get a better deal.

(Speaking of pee tests, can someone please invent a better way for women to pee in a cup? I can't be the only one trembling with fear that I'm going to drop the cup in the toilet and pee all over my hand.)

I guess what bothers me is the implication of all these tests. That what, if the test is positive, that I overhaul my treatment plan, or cease treatment all together, for the fetus? Because that's not what I would do. It just isn't. But I feel like that's the expectation.

I know there are medical reasons why they obsessively test for pregnancy. But the little blue plus or minus is a loaded thing for anyone. What if I wanted to get pregnant, and every negative nest felt like another failure? I don't know. They're just so cavalier about it. But the medical community is cavalier about a lot of things. Like the time when Matt's oncologist laughed when I asked about clinical trials. (There were posters all over the hospital - "Ask about a clinical trial!") Like he actually laughed in my face. Ugh. Going down a bad road here.

ANYWAY, please be more sensitive about pregnancy tests all doctors everywhere k thanks bye.

Tuesday, February 25, 2014

The Fuck It List

There's a thing about cancer...I don't want to say it's a positive, because I don't like giving the C word that much credit. But there's a thing about it, that kind of makes you not care about a lot of the silly stuff you worried about before. Something about the brush with mortality, or being humiliated while hairless. There's certain things you let go of. Like family drama? Don't have time for that shit.  

It comes and goes, of course, this bit of enlightenment. Sometimes I'm as self conscious as a 12-year-old in gym class. But other times, I said, "Fuck it. I'm grinding at the wedding/laughing inappropriately/whatever."

Some people talk about having a bucket list. That phrase kind of makes me want to vomit. But a Fuck It List? Shit you're gonna do for those moments when you just don't care anymore? Yes, please. So here goes:

FUCK IT, I'm going to just...

- Sing along with my headphones on the subway. LOUDLY.
- Wear sparkles any damn time.
- Tell someone exactly what I think of them.
- Be unabashedly self interested...for a few minutes, anyway.
- Spend way too much on nail polish.
& etc.

What's on your Fuck It List?

Monday, February 24, 2014

Echo


Echo today. I get one every few months because of my year of Herceptin, and the cardiac damage that drug can do. An echo-cardiogram is a sonogram, or ultrasound, of the heart.

I'm thinking about echos as the technician sticks electrodes to my chest. "This will feel cold," she says as she applies the wand, covered in blue gel. As usual, I don't feel anything there.

The first time I had an echo was actually in high school, during a mystery illness. Odd symptoms, months of achy legs and a butterfly rash, pointed to things like lupus, but thankfully turned out only to an unusual case of strep. Anyway, while it was still a mystery I had an echo, and the swishing sound of my beating heart made me laugh, uncontrollably.

As the sound of my heart plays again, sounding alternately like cats fighting and bad dub step, I think of my other near misses. The times when it could have been bad but wasn't. The riding accident when I was ten that left my helmet crushed, but my skull intact. Another mystery illness, when I was eight and couldn't eat or sleep from belly pain. After several procedures (that were difficult to perform on a stubborn second grader) there was a collective shrugging of shoulders: it must be nerves.


I think of those moments of almost-catastrophe, and wonder if this was the time when my luck just ran out. It couldn't keep being nothing.

Or, I realize, this could have been another near miss after all. I won't know, till I die from something else.
The tech finishes up, and I wait for the doctor to tell me the results. A man with perfect teeth shakes me hand, and tells my I have a normal healthy heart.

Growing up, there was a railroad bridge near our house. When I was small every time we would walk under it I would yell "Abaygo!" which was my way of saying "A big echo!" I can still hear my voice reverberating, repeating, returning.

Saturday, February 15, 2014

To Mam or Not to Mam

Okay, so let's talk about this mammogram article in the Times. Here's the basic idea:

"One of the largest and most meticulous studies of mammography ever done, involving 90,000 women and lasting a quarter-century, has added powerful new doubts about the value of the screening test for women of any age.

It found that the death rates from breast cancer and from all causes were the same in women who got mammograms and those who did not. And the screening had harms: One in five cancers found with mammography and treated was not a threat to the woman’s health and did not need treatment such as chemotherapy, surgery or radiation."

As you might imagine, there's been all sorts of outcry about this. Things from, "no more mammograms," to "this study is bullshit." I really wish that it were possible to have a nuanced discussion about this. The issue is complex, and there are undoubtedly many many things that should change about the way breast cancer is approached. But, until that discussion happens, here are my thoughts, thrown out into the void:

- It's not mammograms' fault that there's no cure for breast cancer.
Mammos don't cure cancer, the way xrays don't heal broken bones. If people are still dying, despite early detection, isn't the onus on the treatment?

- I take serious issue with the "needless treatment" concept. 
DCIS, or stage 0 cancer, gets talked about like it's nothing, and requires no treatment. Actually no. There's no way of knowing in which cases DCIS can become invasive, as it did with me. At the very least it need monitoring. And how do you monitor? Mammos.

- Companies don't make mammography equipment, and hospitals don't administer mammograms, out of the goodness of their hearts. 
It's a business. The idea of "early detection saving lives" true or not, is one that's made a lot of people rich.

- A flaw in this study -- participants were monitored the entire time. 
We all know women that only go to the doctor once a year for a mammo and a pap smear. Or, take advantage of a free mammogram in October, without ever actually seeing a doctor. One thing that I find interesting is that no one is saying, "Wow, clinical exams are really way more effective than we realized!" Hmm.

- Somehow, in all this back and forth, prevention is almost never discussed.
Screening can become perfect, and treatment can become completely effective  -- but if people are still getting BC, I think it's a major failure of medicine.

Mammograms are a piece of the BC puzzle. They are not the be all and end all. They do not protect women from cancer; they aren't a magic spell to keep it away. I think they are important, even if only to keep women aware of what the hell is going on with their bodies. I think with every mammo there should also be an information session on reducing risk. (And let's go beyond the usual patient-blaming thing of staying thin, okay?)

What I hated about this article is that I'm worried that women will stop going all together. I know  people that are so fearful of cancer that they get into this "I don't want to know," mindset. A flattened, simplistic, kind-of misleading article like this might just be enough of an excuse for someone to completely disconnect. And that's bad for everyone.

Friday, February 14, 2014

Once more, for the cheap seats

If you have a moment, dear reader, please consider voting for my video "One Year/One Minute" in the Breast Fest short film contest. Vote up to three times here.

The contest has ended! Thanks to all who voted.

What to expect when you're never going to be expecting

Weirdly a propos of yesterday's post, I submit this artifact from 2009:


Stumbled upon this randomly this morning. 

I don't mean to be dramatic. Most of the time it's all okay and normal. But there are moments. Oh, there are moments.

Wednesday, February 12, 2014

The Dark One

I have a clump of something under my skin on my upper chest. I'm, surprisingly, not worried about it. I know it's scar tissue, or angry knotted up muscles. My left side is full of that stuff. At my follow up with my onc this week, I mention it to her, just to cover all the bases. She isn't worried either, but goes down the hall to grab my breast surgeon to cop a feel. (This is one of the many things I love about my hospital.)

My surgeon thinks it feels like muscle, but wants an ultrasound to be safe. When I arrive in her office, after having gotten dressed for the fifth time today, her PA tells me radiology is full. She leads me into an exam room with an ultrasound machine.

"We'll just do it here," she says.

I change again into the pink gown, and wrap my sweater around me for extra warmth. This wing is under construction, and apparently heating is a problem. My doctor comes in with her PA and a new-seeming resident.

She apologizes for the icy ultrasound gel, but I can't feel it. She tells me to look at the small dark screen. She points out my skin, my ribs, my quivering lungs. The dark screen swells with all my tissues. "This is all looking perfect," she says.

The way I am sitting, reclined, gown open, neck craned, reminds me of something. Oh yes, I think. This is the way I would sit for my ultrasound if I were ever going to have a baby.

But I'm not. I realize that this is probably the only circumstance when I will enact this familiar scene. I glance at the others in the room. Their faces are all trained on the monitor.

I watch the shadows of my body appear and disappear. So much of this feels like a mean joke, with cruelly direct allegories to pregnancy. In both, a cluster of cells grows, though my body made family of tumors, not zygotes. Once chemo started, I stopped getting a period. I gained weight. My diet became increasingly bizarre. I became forgetful.

I'm not sad that I'm not having a baby. Carrying a child was likely not going to be in my future, even before this. Then I was diagnosed at 28, about four years after Matt was at 27. In our minds, we're not the best people to be replicating our DNA. (I know not everyone agrees with this.) And it's fine.

So what feels cruel is the twisted wrongness of it all. The alternate universe in which all these changes and activities are signifiers for happy normal things. My three month cake-only diet would be an adorable pregancy craving to laugh about for years, rather than a troubling response to chemo-altered taste buds.

Sometimes, when I see my reflection in the darkened subway windows, I feel like I see an alternate me. One who's grown up meaner, learning things the hard way, without soft landings. Her face is hollower. The darkness shows age, and weariness.

For a moment here in the exam room, looking at my black and grey insides flicker by, I am her.

Saturday, February 8, 2014

The Nuclear Winter

Today marks one year since finishing radiation. Last night, I dreamt that my onc told me I had to go back and have more, this time on my heart. I cried and cried.

When I told Matt this, he said, "Was it really that bad?" Yeah, it kinda was. It's not for everyone. Some people do very well. But my skin was not happy, and it rebelled. I still have the burn mark, though it's faded quite a bit.

I recently found a little green glass vase in my parents' garage. It's from my grandfather's collection of antiques. It turns out it's vaseline glass, aka uranium glass. It glows under ultraviolet light. It's radioactive. Not dangerous, because I guess it's only beta particles. I will keep it like a talisman.

2013

2014

Wednesday, February 5, 2014

Spied


Heartbreaking notes scribbled in a magazine at the cancer center.

Monday, February 3, 2014

Good Pain



I got a massage yesterday, at my local looks-like-a-brothel massage parlor. There were elbows involved, and climbing on the table to get leverage. It hurt like a motherfucker. But you know, in a good way.

It's so weird. As I was lying there, taking a beating from the small, middle aged therapist, I was thinking, "if I felt a pain like this just randomly, or if someone hit me with something I would probably yell out and run away. But because she's doing it, I don't know, it feels good." It feels virtuous maybe? Or is it my knowledge that it has to be done, or my trust in her expertise, that makes me accept it? Or is it that, like all of us I think, I'm just a little bit of a masochist?

But it's not all nice, obviously. Most pain isn't the hurts-so-good variety. To make up for that, people say things like what doesn't kill you makes you stronger, and other platitudes meant to make suffering meaningful. Sometimes pain does mean something. Sometimes it instructs. When you burn your hand on a hot stove, you learn not to touch the hot stove, and etc., but that doesn't magically extend to everything.

I think I have learned that most pain is meaningless. And the times in my life when I have been in the worst pain, like after radiation, or while waking up from my most recent surgery, all I am left with, all I can express, is why? As I lay in O.R. recovery in August, hot pain dotted my chest. Tears rolled slowly down my cheeks. I sobbed silently, saying only to Matt why does this hurt so much why why... And scaring him so bad, and him calling the doctor, and an angelic nurse pushing more and more  fentanyl until we switched to dilaudid, and it all just dissolved away, quicker than he could inject the full dose. And after it was over, I thought that maybe I was just being dramatic.

That's an odd thing about pain. How we don't remember it. I remember the intellectual experience of it; remember my tears and my fear, but the visceral thing is not something I can call up, the way I can with a tickle or hunger.

I think there's something about control. The hurt-in-a-good-way thing is predicated on my being able to stop it whenever I want. A few times, as the massage therapist dug into my knotty shoulder with her elbow, I almost told her to stop. But I didn't.