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Cancer Diary #64, between chemo and radiation. More of my videos here.

Hair and Other Post Traumatic Traumas

This morning.

The time of baldness is a blur now, a long, sustained surreal blur in which I became ultra-focused on hats, scarves, and bandanas, and lost the habit of reaching for shampoo in the shower. I still forget to wash my new hair on a regular basis.

I suppose I'm in denial about this new hair.

When it first started coming in, so white, I was amused. It felt like I was wearing the remnant of a daring Halloween costume, hard core biker punk-rock roller derby chick, or Susan Powter in the height of her "Stop the Insanity!" kick. I liked it. (psst - don't know that reference? Feast your eyes here.) But then, as more and more hair came in, darker but still absolutely gray, I saw a pixie-faced prematurely old woman in the mirror. It felt like someone had stolen years of my life, not to mention my eyebrows.

People, especially gray-haired women, though not prematurely so, could not stop laughing with delight over how much they liked my new hair. Of course I appreciated their compliments, but I had a harder and harder time listening to them, thanking them, answering their questions about whether I would keep it short like this or grow it back (they hoped I'd keep it short). I wasn't exactly sure why these conversations were so hard on me until it all came out during a counseling session in a spew of angry tears. Having spent the winter sick and miserable and scared and fighting for my life, I felt like I was betraying my own self, dishonoring the truth of my full experience by passing the spring and now summer in such superficial conversation.

To be fair, it could be that every one of those women who commented on my cancer-makeover first inquired as to how I was doing. Many times I recall saying, "Right now? I'm doing okay," which I assume sounded to them like "I don't want to talk about the past." The almost inevitable response came back, "Well you look great." to which I, of course, said, "Thank you." And then, if we both stood there another second, they reiterated, or rephrased ("You really do look great" or "I really do like your hair like that. Are you going to keep it that way?") and we were off to the races.

All this would be fine if only I could figure out how to not give off that I-don't-want-to-talk-about-it vibe so that once in a while, I could feel supported rather than drained by these well-meaning interactions. The trick is that sometimes these conversations take place in the grocery store aisle when I've got just twenty minutes to fill the cart and get to my next appointment, or in moment when actually, I don't want to think about cancer. But also, I've learned from experience that many people don't want to or are not capable of listening to the hard core reality, won't know what to do or say if I tell them, "Well, the truth is, I feel like I have post-traumatic stress. I feel like I just came off the battlefield. And, by the way, I'm still in treatment every day and I'm still scared out of my mind when I think about it, and yesterday my beloved neighbor told me she just found out she has breast cancer too, and suddenly I can't stop eating." In fact, I imagine some of these innocent inquirers would shuffle nervously and respond like this: "Well you look great."

But maybe one or two would say nothing and just hug me while I weep.

Here's a hint: If you want to be a friend to someone going through cancer or even pregnancy or any other body-changing mortality-awareness-inducing life-altering physical experience, sure you can tell them they look great. But don't leave it at that. Assume that the reticence you may perceive as lack of interest in talking about the hard stuff is probably more of a self-protective knee-jerk expectation that you really don't want to hear. Figure out a way to acknowledge or inquire about the depth of experience beyond the surface. Whether or not your friend has the grace and presence to acknowledge it in the moment, whether or not he or she walks through that open door, they will appreciate your efforts. I promise you.

Can I get a witness?

Hump Day

Thirteen down, twelve to go.

Does anyone know what this plant is? The butterflies and I agree, it smells delicious.

This one I know: echinacea, a.k.a. purple cone flower. I planted it three years ago, got my first blooms last year - just three. This year, more well over a dozen.

The lavender in my garden attracts a lot of buzzing friends.

Speaking of friends in the garden, my good neighbor Jane came by today for dill and left a jar of pickles in the fridge. I told you she was a good neighbor! Check out her blog.

Today I received my thirteenth of twenty-five radiation treatments, which means there are more behind me than in front of me. I'd like to think it's all down hill from here - down hill in a good way, meaning that things get easier, but I fear it's not that simple. From what I hear the inflammation and fatigue, which so far have been relatively minor, will worsen. Plus, next week I'm due to start Tamoxifen, a pill I'm supposed to ingest daily for the next five years. For some, the side effects are minimal. For others, well, let's just say it's a very long five years of hot flashes, fatigue, weight gain, bloating...

In spite of all that's daunting on the path ahead, I'm still pleased to be where I am now. The quickest way out of a difficult situation is to keep on moving straight through it. And I'm marching right along.

Vlogs are back! Breast cancer and beyond.

Finally catching up with video editing. This is the first since chemo ended - retail therapy, an amazing dog trick, two parties, bra issues, and a whole lot o' cuteness. Check it out.

Next in line: rearranging furniture, a very rude deer, garden harvest, and, of course, more beautiful Millie. More of my videos here.

Routine

Nothing about this video is routine - my first days post-chemo. More of my videos here.

I received my ninth radiation treatment today. Every time I go in I see the same two radiation techs. Each time we tell each other one thing about ourselves. This was my idea and they go along with it kindly. Already old friends, the challenge for them is to come up with something they don't already know about each other. For me, it's easy, they know little about me beyond the margins of my disease.

I've told them that I have three brothers, that I took figure skating lessons a few years ago, that I spent a year living in a van traveling the country, that I grabbed the opportunity of a misplaced iPod to break my addiction to wireless internet. It's been almost two weeks now that I haven't wasted nocturnal hours next to my sleeping husband checking email and surfing YouTube. And they've told me about their high school days, their creative endeavors, their home towns, their freakishly long arms, and near misses with junk food cravings threatening to disrupt a commitment to a healthier lifestyle. I wish I had more than five minutes with them each day. I like these people.

I also wish I didn't have to lie on that table pretending, unintentionally mind you - I guess that's called denial - that radiation is entirely make believe, hocus-pocus, that I am fine, that I am not actually engaged in a dark and dangerous fight for my life. But the pretending only goes so far. I know the secret handshake now. I'm a full-fledged member of the cancer club, which means other members in need of an understanding ear slip me the inside scoop on their recent scans, the cancer now in their bones. Don't tell anybody.

I keep coming back to this: live now. Live now. Live Now. Then turn the page, accept all changes to the landscape, and live now.

Speaking of which, last Thursday, after my sixth radiation treatment, I did a triathlon. It was a short triathlon, just 600 yards of swimming, 12 miles on the bike, and a 5K run. I made no particular training effort for this, it was a spur-of-the-moment decision and just my second ever tri. The first was two years before, at the same place, and a good eight minutes slower. I was so nervous then. This time it felt easy.

Go figure.

Countdown

After a short hiatus, I'm back on track with the vlogging. The latest installment takes place around my final chemo treatment. More to come! And more of my videos here.

I collected these stones years ago on a beach in Santa Cruz. Now they are my counting stones. On the day I began radiation I put twenty-eight of them in the bowl on the left. When I got home, I moved one to the bowl on the right.

The next day I went to the cancer center only to find that the building had lost electricity.

Every day I receive treatment I move another stone.

  On the third day I went back again and received my second treatment. I also met with the doctor (I only see him once weekly).

He told me they had recalculated - rather than twenty-eight, I will receive just twenty-five slightly stronger doses. When I got home, I took three stones out and set them aside.

When the bowl on the left is empty, with the exception of a daily pill, I will be done with cancer treatment.

Savor

Getting through radiation one day at a time: one down, twenty-seven to go.

Less on my plate. That is what I'm aiming for these days. It's particularly challenging now that I have a radiation each week day: an hour and a half of driving plus two costume changes (in and out of a hospital gown), ten or fifteen minutes lying on the table with two friendly young technicians lining me up just so. When they leave it's just the machine whirring and buzzing and beeping as it zaps me from all the critical angles, and me with my arms up over my head trying not to hold my breath.

Correction, it's not just me and the machine. There's also the light show on the vaulted ceiling -blue then green then blue then green again, with little lights blinking like stars and painted clouds and jazzy Muzak in the background. I find this more disconcerting than pleasant. It's as if radiation was something invented by Disney, which seems very wrong.

But I appreciate the effort.

I've had technical issues with the vlog - my video editing software keeps crashing. Thanks to Google I have that sorted out now though I haven't had time to put the episode in order yet. Bills keep coming and laundry keeps piling up and now our two-year-old refrigerator has gone on its annual summer strike, melting and sweating while the freezer chokes up with frost. Luckily there is produce in the garden and an only half-broken refrigerator in the basement.

And poor Millie, my sweet dog. She has a wounded leg, a deep gash and another welt, who knows what she bashed into but I think I saw it happen, when she leaped back in the tall grass, abandoning her ball chase. I've been back and forth to the vet two days in a row now for her, getting antibiotics and antiseptic and salve and a second look, since the swelling got worse for a while there and I can't keep her from licking at it.

The point is, I'm busy. Just one-fifth of the way into radiation, I'm already getting tired. Yesterday I took what I expected would be a twenty-minute nap and woke up groggy and shaky to a ringing telephone, two hours later. This morning, in what has become my thrice-weekly swim across the lake at Bigelow Hollow, I felt weighted and slow.

I'm still working diligently on my book, my proposal for a cookbook all about preparing food creatively, eating healthy without recipes. On a good day, I get three straight hours to focus on it. The closer I get to done, the more I realize the challenge I've set out for myself is not as easy as I thought.

But I'm determined.

And trying to accept a slower pace.

And drinking a cup of fennel-peppermint-nettle tea before bed.

In service of the cookbook (and my belly) I made my favorite Thai soup, Tom Yum Goong.

Another cookbook test batch: spicy black bean stew.

A treat: fresh figs with cashew cream (cashew butter, hemp milk, agave, cinnamon, nutmeg)

Savor.

Salad today. Thank you, garden.

Summer

Sometimes summer is about color and light and movement and scent. Words? Not so much. So for now, I'll offer only these: It is seven in the morning, a Tuesday. My dog is sleeping on the couch with her paws in the air. Friends with a guest from Japan prepared a Japanese feast for us last Friday. (I photographed my plate.) Tomorrow I begin radiation. Before I go I'll swim across a half-mile lake, and back. Twice. I'll be ready.