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Friday, May 30, 2014

La leche

I can't steam the milk properly. For weeks now, my little coffees have turned out insipid and thin. I wasn't great at it before, but once in a while I could reach that burnt sugar velvet. Now the milk is merely hot, verging on burned. Not transformed. Just coffee and milk instead of a bittersweet cloud.

Saw the plastic surgeon, had a laugh over the new photograph in the exam room: a commissioned work, aim which the artist blew up, exploded, a bag of breast implants.

The implants remain surprisingly intact. Tough little fuckers.

He's still not convinced about my skin. I wish I were made of silicon implant skin, though then you'd see all my insides I guess. But I wish I were that tough.

But the radiated skin is tissuey and thin. Like the skin on my grandmothers arms in her ninth decade. Easily torn. I read that chemo ages your cells an extra 15 years, which I guess explains the new silver hairs on my head and creases in my face.

But not why I can't steam the milk properly.

Friday, May 23, 2014

Ballads for a Clinical Trial

The final installment. This single came out the year I was born.

Looking back

The past almost two years of treatment have broken down into a number of phases.

There's the surgery phase, the chemo phase, radiation. These are all discreet -- they can't happen at the same time, though they are jammed together. Then there are the ones that overlap, like herceptin, physical therapy. 

This has been the end of the most intense part of my clinical trail for a breast cancer vaccine. (I've been traveling to DC every three weeks to take part in the trial. I'll still have to go back every six months for the next couple of years.)

On the train, I stare out the window and think about where I was this time last year. Also on the way home. I'd gone to Sweden for work, to install a museum show. I overdid it, and came home with the scar on my breast breaking apart. The trip didn't cause it, but it hastened the inevitable.

This time two years ago I was in Rome, miserable and homesick. I thought it because I just wasn't meant to travel, but now I wonder if it wasn't the old spring/summer sadness.

The May before that I was at the beginning of my novel, feeling full of energy and thinking I'd finish in six months. I was working a second job at a day care, and only rarely feeling that "I want one!" urge when holding the babies.

The first May of the decade has nothing written in my calendar. 

And five Mays ago, Matt was made hoarse, and then silent, by radiation to the base of his tongue. I had just been accepted to graduate school. 

The constant? Planting tomatoes.

Tuesday, May 20, 2014

En Español

I'm thrilled to announce that my blog in in the process of being translated into Spanish! Click over to VTDNJ to read from the beginning.

A million thanks to Angel Sanchez of Mexico for doing the translation!

Wednesday, May 14, 2014

While my masseuse gently weeps

JK. It's me doing the crying on the massage table, natch.

I am at a massage therapist's office, to work on some of the stalactites of scar that are crowding up my left chest. My skin is stuck down in a lot of places, and movement is weird.

In December I watched some self massage videos on YouTube, and got pretty good at it. I would heat the area, and then zone out in front of the tv, massaging away. I was able to unstick enough to get my last fifteen or so degrees back in my range of motion.

But there's still more to do, and I've gotten as far as I can on my own.

I tell my whole story to the therapist. Instead of freezing up, or clucking that I was too young, she asks questions. Informed ones. And she listens closely to my answers.

She explains that since it's our first session together, she's going to move slowly and gently. I say okay.

She begins at my feet, and before moving on to any new area, she asks if it's okay. Traveling to my head and check, then beginning myofascial release on the right side. After a few minutes my shoulder is lower. We talk about breathing.

She begins working on my left arm, setting of some kind of alarm in my left foot, which throbs deep down near the knuckle bones. She redirects for a few minutes, then asks,

"Would you like me to work directly on the scar?"

And I say yes, definitely.

She makes a wide circle, light touch moving inward toward the scar, towards where I have no nerves left and feel nothing. And that's when the tears come.

She sees me, or feels the change in the energy of the room, and covers me up, and gets me a glass of water. And since I'm already in tears I tell her lots more. I tell her that I am still so angry.

She talks about the way trauma can cause us to disconnect from our bodies, and that reentering can be so hard, so slow.

Then she takes me out to pet the therapy dog, and recommend a delicious bottle of rosé for me to pick up on the way home. (She's a keeper.)

Maybe the tears are what those other practitioners were hoping to avoid a couple of weeks ago. My fragility.

But this is not fragility. This a dandelion growing out of the pavement. First the sidewalk has to crack.

I don't feel broken after leaving. I feel new.

Monday, May 12, 2014

Let's talk about mental health

And about 4000 mg of Sam-E later, I'm getting back to normal. The shit works.

I've been taking it since my first visit to the nutritionist, towards the end of chemo. I was in one of those insidious depressions where you have thoughts like, "Everything is terrible. I should be depressed. Anything else is a lie." I scared Matt by refusing to get out of bed. I felt like it was the only thing I could control.

In addition to the Sam-E, I have kept myself running the last almost two years on a combination of therapy (my therapist is wonderful, and also had BC as a young woman, so she gets it), yoga, support groups, meditation, TV, and the occasionally prodigious use of Ativan.  I had been through cancer with Matt, and I actually felt like parts of my own were easier, having gone through his. And still, I consider myself moderately to sometimes severely fucked up by this. (Maybe that's completely obvious...?)

My therapist and I talk about the symptoms of PTSD I sometimes exhibit. Things like, I startle at minor, non-frightening occurrences. I gasp, sometimes scream, my heart pounds, when I do something like drop a can of cat food on the floor.

PTSD has been studied a bit in survivors of childhood cancers. And check out this Breast Cancer Social Media chat about PTSD.

We talk about anxiety about things like car crashes relating somehow to the tiny chance that I would get sick, and beating those odds. What's to stop other tiny odds from coming true?

Abstract of a study on YA women with cancer and their mental health. Bonus: refers to those without history of disease as "non-cancer females." Oh, what I'd give!

I can't, and don't really want to, imagine where I'd be if I weren't hyper-aware about the mental health implications of all this going in. If I weren't in therapy, if I wasn't seeking support constantly. It can be hard, especially in the midst of treatment, to even begin to think about mental health -- things like, do I really want to add another weekly appointment or another medication? I totally get that.

And our doctors are mostly focused on the physical. They see us for a few minutes at a time. They're not as plugged into this as they should be. It's unfortunate that, at a time when a person is most vulnerable, most tired, most not up for fighting for one more thing, that they must be their own mental health advocate. 

Check out the Resources page for links to some of the organizations that helped me a lot.

And, speaking as a caregiver, the fun doesn't stop with the cancer patient. Caregivers can actually end up with higher rates of anxiety and depression than the patient.

Speaking from my own experience, I felt completely and utterly responsible for Matt's health. I felt that if something happened, and he got sicker, or he died, it would have been because I didn't take good enough care of him. I know that's irrational, but at the time it felt like the truth.

So that is all to say, please please reach out to a therapist, hospital social worker, family member or friend (or all of the above) if you're dealing with a cancer diagnosis. I'm always here too. It helps so much to talk, to say things out loud. And we need all the fucking help we can get.

Monday, May 5, 2014

Wrong side of the blue

And without warning, depression descends.

Had a pretty cool week, and then woke up Saturday with that old shadowy feeling. This happens to me every spring, and somehow I forget every year until it's bearing down on me.

I'm in the early stage, which means that, if this is me in a dark, dirty shack in the wilderness, I can still hear a muffled voice speaking to me through the greasy glass: it isn't true. You can get out.

It can feel like defeat, when after what is now bleeding into years of treatment, the color suddenly drains from my vision.

I see a therapist, I know how to deal with it. I am/will be okay. But I felt it was important to share here, in the spirit of being truthful about all of this experience. 


Thursday, May 1, 2014

The difference between have and had

I'm in DC for my trial. (Clinical, not criminal.)

This was the first time that I came down thinking, "Damn, this is really a pain in the ass." I have a pretty high tolerance for inconvience.

But this trip has been kind of great. Crazy expensive hotels meant I found a really sweet room in someone's house on airbnb. In the room, I found the book "A Month in the Country." Apocalyptic deluge meant I stayed in reading. Today I visited a fucking gorgeous apothecary museum in Alexandria, and had one of the best dinners I've had in my life. 

I figured out great things, and raised more questions, about my novel, and generally did a lot of satisfying thinking. 

While at the hospital Wednesday, I meditated between vitals checks. I pictured inhaling all the stars in the sky, and stacking them up to rebuild myself.

And last night, I realized that the next time someone asks, I will say "I had cancer." 

It's not over. I know that. And I know I won't always feel so confident and unsuperstitious. But still. Had. Had!