BeTwinned

Thinking that tomorrow marks the halfway point through six weeks of daily radiation treatments, I walked into the hospital late this afternoon, looking around me like I always do, down the long hallways of the radiation wing.

Elvis Costello’s song “Everyday I Write the Book” was running through my mind, and I could actually feel the sound of the groovin’ piano accompaniment in my fingertips, some of which are still numb and tingling from surgery and months of chemotherapy.

For all the years that I have loved that song, I’ve never really known all the lyrics.  So, I thought about the title while I walked past people on rolling hospital beds, vulnerable-looking lumps with hospital socks sticking out the bottom of rumpled hospital blankets.

Everyday for the last three weeks I have come to the hospital.  Everyday I am reminded of how, only a few months ago, I was one of those lumps in pathetic nubby hospital socks.  The day of my surgery I was also in the hallway on a rolling hospital bed, waiting for a procedure in the radiation department.  I had to wear one of those sheer, poofy head coverings over my bald head.  I was so scared, but still, somehow, peaceful.

Everyday I come here and go through all those emotions again, from beginning to end, as I see all the people on beds, waiting in the hospital corridors, looking so ragged and so alone.

I went through the double doors into the radiation oncology wing, changed into a soft hospital gown and put my jewelry, blouse, watch and purse in a little locker.  Hugging the gown around my bare torso (do those strangely-placed ties ever close the gown to anyone’s satisfaction?) I headed to the treatment room where the kind nurses and technicians were waiting to radiate the site where the cancer used to be.

As I laid down on the table, watching red laser beams criss-crossing my body to help line up the beams of radiation, I thought: Everyday I write the book.

It’s Breast Cancer Awareness Month, in case you hadn’t noticed.  But, of course you’ve noticed.  You can’t help but notice when it seems like every single product commercially available this month touts a pink ribbon or a redesigned package that features the color pink.

Even though every month is Breast Cancer Awareness Month for me, I really do get the purpose of the special month for breast cancer, and I am not complaining.  I really do appreciate the money going to research and the increased awareness and acceptance from the public.

I haven’t personally researched it or anything, but when something like the pink ribbon becomes so commonplace, so ubiquitous — I think it’s called pinkwashing — I can’t help but be suspicious.  How much money is really going to research?  How many of the redesigned packages are just PR?

Sorry to be negative, but I’m just supposin’ here.

And then last week I went to pick up a few things for a taco feast for debate night, and I saw that even the guacamole was in a pink box.  That, frankly, grossed me out.  Breast cancer pink and guacamole green don’t look good together at all.

I would like to find a really helpful way to contribute to the cause.  Buying guacamole in a pink box doesn’t feel like the solution, somehow.

That’s what my friend Lisa said when I told her that I had to get all glow-y at my radiation treatment the other day: “Every day is glow day.”

Yup, every day for the next six weeks (except for weekends), I get a little glow at my ultra-personalized tanning salon, a.k.a.: the radiation oncology department at the hospital where I had my surgery.

Radiation is painless.  You lay there on a narrow bed while this machine aims radiation at your body at what seems to be a pretty oblique angle.  I think this is so the treatment affects the places where the cancer was and not the areas you don’t want treated, like the lungs and heart.

The technicians know where to direct the beams because they used a CAT scan machine to figure out exactly where to aim the radiation.  Then they tattoo you and take pictures, and I think they create some sort of template so that they can replicate the treatment each day.  Some days they put a rubber mat over the treatment site.  It looks and feels like a dish mat to me, so that’s what I call it.  Its purpose is to somehow make it so the radiation comes more to the surface of the skin.

It’s very quick.  My whole daily appointment is only 15 minutes.

During the treatment, I try to go somewhere else with my mind, or I do some sort of imagery or meditation to let my body know that these strong beams are healing beams, beams that will scorch the earth, making it impossible for cancer cells to live, thrive or to take up residence on or anywhere near where my tumor was.

Good riddance.

The first day of radiation I went to a breast cancer awareness event at the same hospital where my treatment is.  (Here is the article from the Pasadena Star-News.) After donning enormous pink t-shirts, we all linked arms and waved at honking cars that drove by.  I stood there, wondering how I got there, how any of us got there.

But the really strange moment was after the event, when we took a group picture of the attendees.

Someone called for the survivors to come to the front for the picture.  I scooched my way to the front and was suddenly overwhelmed with emotion.  I looked around at all the survivors, the women of all ages and ethnicities, and I felt a wave of great hope and humility wash over me at the same time.

Freaky.

Then, I went into the hospital cafeteria to grab lunch before my appointment.  When I was seated, I saw two women looking for a place to sit.  I gestured to them to come share my big table, which had plenty of room.

Turns out that Susie and Ellie, the women who joined me, were 8-year survivors.  Both had had cancers and treatments similar to mine.  It was so great to talk with women who are doing great, feeling great, feeling hopeful and who have been cured.

These wonderful women offered to escort me to my first radiation treatment.  They introduced me to everyone there, and I felt like a celebrity by the time they left.  The treatment was easy-peasy, and after counting the number of treatments I’ll have, I realized that I’ll be done with my cancer treatments by Thanksgiving.

Every day really is a glow day.

I tried a breast cancer support group a few months ago, at the beginning of summer, but it didn’t work for me that day.

After hearing everyone’s stories, I came home flooded with emotions and fear and couldn’t stop thinking about all I had heard.  Really, I couldn’t handle it.

So when a friend told me about an event at the local Wellness Community — an event that was scheduled at the butt-crack o’Saturday morning, no less — I was hesitant, figuring that even excellent speakers would leave me spent and overwrought like the support group had.

Besides, I love spending my Saturday mornings with my husband and kids, and I already feel like breast cancer has taken so much from us that I don’t want to give it any more space than it has already gobbled.  Literally and figuratively, if you get my meaning.

But, I do actually have breast cancer (or maybe I can now, after chemo and surgery, say that I had breast cancer; or do I have to wait until radiation is through to get to speak of breast cancer in the past tense?), and if I intend to be around a good long while, which I do, then I need to remain informed and connected with the disease and the folks it has touched.

Plus, since my diagnosis I have been trying to do some things just a little, well, differently.  Exactly why I am doing things differently is the topic of a whole nuther blog post, or two or three.  Suffice it to say that lately, when I feel pulled in different directions, I’ll say to myself, “Just do it different, Diana.  Do something different,” and then I do something different than what I would have done as my pre-cancer self.  Just for the heck of it.

This means that I had to go to the Wellness Community event this morning.  I met my friend there, and it was really nice to see her looking so good and moving through the last parts of her treatment.

It was really worth it.

There was an excellent keynote speaker.  I am not sure if I can use her name, now that I think about it, because during her presentation she said that she tried to keep her struggle with cancer private from her professional life.

She used a labyrinth as a metaphor, and this image really spoke to me.  I had never realized that labyrinths are different from mazes.  A maze has dead ends, tricks, traps.  A labyrinth has one way in, and the same way out.

Apparently, there is a resurgence of people using this mythical icon as a metaphor for life’s journey, for the healing journey.

The speaker got me thinking about so many things … where am I going?  What am I leaving behind?  Is it peaceful at the center of my own labyrinth?  Shedding, doing some things differently like I’ve been trying to do — is that a part of the journey to the center of the labyrinth, or is it a part of the coming out, since one goes out of the labyrinth the same way one goes in?  Just thinking about it is labyrinthine!

In any case, I’m glad I gave my morning to breast cancer.  I met some wonderful fellow survivors, and I have some new mysterious things to think about.  I came home feeling peaceful and enjoyed my family completely.  There was still plenty of time in the day to make gluten-free chocolate chip cookies and cocoa for my girls and their playdate friend.  A close friend brought over a great soup, and we all shared an impromptu feast of soup, salad and Trader Joe’s jalapeno blue cornbread.  And now my husband and I are happily waiting up to see if Tina Fey will appear on Saturday Night Live.

A perfect Saturday.

As I come to the end of nearly six months of treatment for breast cancer, I find myself a little underweight.

I feel guilty saying it because I know there are many people who struggle with being overweight.  Even though I am only a few pounds underweight (and none of my doctors are worried about it) I can’t fit in any of my clothes, and it’s kind of hard to feel healthy.  A couple of people have even commented that I look skinny, and they didn’t mean it as a compliment.  (As a side note, dontcha just wish sometimes that folks would keep their opinions about your appearance to themselves?  Here I am, after 8 rounds of chemo and then surgery after that, I’m trying my best here folks.  I don’t need to be stopped in the parking lot at work and told that I look skinny.  You could tell me that I’m positively glowing from the radiation treatments, and I would chuckle with you; or you could tell me that my new hair is so soft and ask to pet it — people have done that, and I have to say that I really do like getting pets on my fuzzy head in the middle of the day — it makes me smile!  But being told you’re so skinny does not make me smile.)

Now that I am dealing with a minor weight issue, I suddenly have developed a new empathy for people who struggle with their weight in any capacity.

I have always eaten what I wanted to and never worried about it.  Extra piece of cake?  Sure.  Cream in my coffee?  Why not?  Indulge in a chocolate binge?  Of course!

I was a comfortable 155 lbs. before my diagnosis at the end of January this year.  Then, after my diagnosis, I immediately dropped 10 lbs.  I honestly think this was because I stopped drinking a decaf cafe mocha (or two) every day, and I started exercising regularly.  So, I didn’t worry about it.  But, since surgery, I have dropped another 8 lbs., and then I started to worry about it.  As I said, my doctors aren’t worried at all.  Even so, I decided to speak with the dietician at the radiation oncology center.

She was very helpful and taught me a lot about nutrition.  We discussed how I might bulk up a little, so I started really looking at food labels and putting extra consideration into what I was putting into my body.

One thing I learned is that all the big national associations for cancer (here is the nutrition page from the American Cancer Society, for example), heart disease and diabetes all agree on the diet that can help avoid these major illnesses.  They all pretty much say to eat lots of fruits and vegetables, to avoid red meat, to eat whole grains and that most of your diet should come from plant sources.

From reading labels I have also learned — and this is my new soap box issue — that a lot of common drinks, like sodas, teas, sports drinks and even lemonade, have just about 30 grams of sugar in an 8 oz. serving.  Yick!  That’s an incredible amount of refined sugar that you can consume in an instant!  30 grams of sugar.  That’s about 9 sugar packets or 6 teaspoons or 2 tablespoons.

So the trick for me is to up my calories and protein, without upping my refined sugar intake.  My big solution is a giant turkey club at lunch time, though I can’t yet do it without the bacon.  (But I’ll keep trying.)  With some avocado slices on there, I get a nice (healthy) fat and protein boost and stuff in a couple of servings worth of fruit/veggies.  Yum!

I also learned a trick that I hear is an old Weight Watchers stand-by: only weigh yourself once a week.

This past weekend, as I buckled my daughters into their car seats outside of a store, I got that prickly feeling on the back of my neck, that feeling where you know you’re being watched. I didn’t have to look far to see a family leaning against a brick wall across from my car. I saw two little girls whispering.

“Huh? Who?” said one of them, craning her neck and squinting her eyes as she flitted her head around like a little bird.

“There,” hissed the other girl in an annoyed tone. And, even though I saw her see me looking right at her, she pointed firmly, right at me, and stressed, “THERE. That lady is bald.”

Her friend looked at her, sort of bewildered.

I rolled my eyes and started to get in the car, but then felt compelled to say something to the little brat.

I got back out of the car and leaned my elbows on the roof.

“You’re right,” I told the hissing girl in the most patient voice I could muster. “I am bald. That’s what happens when you have cancer and have to take a medicine called chemotherapy. But my hair will come back soon.”

“Yes,” said a woman, who I assumed to be the girl’s mom. “We know about chemotherapy. One of our friends had chemotherapy last year,” she said deliberately, moving toward her daughter and giving her an I’m-going-to-kill-you-when-we-get-home look.

The mom’s embarrassed look prevented me from saying anything else.

Like: “You know, people with cancer have it hard enough, and they shouldn’t have to endure stares and pointing from people in public. If you want to talk about it, that’s OK, but maybe you could wait until the person is out of earshot to do it. Or, since I am wearing a bandanna and not a wig, you could conclude that I am not really trying to hide the fact that I am bald and would therefore welcome honest inquiries. I have gotten those and don’t mind them at all.”

Driving home after speaking to that girl, I felt a little silly about the whole incident, wondering whether I had traumatized her or something. At least she won’t be talking about people and pointing that nasty little finger at folks in public anytime soon.

I don’t think it’s too much to expect, even from young kids (as long as they’re at an age where they can understand, like the girl in question most assuredly was), that children can be polite in front of people who are different. I teach at a girls’ school, where I walked around in my little cancer hats in front of 500 kids from grades 4 through 12, and I have to say that, for the most part, the students were pretty easygoing about my before Spring Break I had hair, and after Spring Break I have hats look.

While I deeply appreciated these kids’ politeness, my favorite approach, though, is still from the 4 and 5 year old set, who just ask you what they want to know: “Do you have any hair?” “Where is your hair?” “Will your hair ever grow back?” “Why are you bald?”

And, there are my daughters, who simply kiss my bald head and tell me that I am beautiful.