To No Longer Look Like a Cancer Patient

A few weekends ago, I walked with a friend who was diagnosed with breast cancer two weeks before me. Because of a different sequence of treatment, she finished chemotherapy in June, two months after I finished; and so, unlike me, she still bears the bald head of a woman with breast cancer. “What does it feel like to not move through the world as a cancer patient?!” she exclaimed, when she saw all my hair.

It’s actually a question I’d already been pondering. The answer changes depending on the day, the circumstance, the company.

The week before my May 20th surgery, my family and I traveled to Sedona and the Grand Canyon; and though I didn’t yet have my brows and lashes, I did have my energy back as well as enough hair on top of my head that, for the first time since starting chemo in November, I felt like people not-in-the-know wouldn’t look at me and immediately see someone with cancer. Since I was a plane ride away from my small hometown, for the first time in 6 months, no one beyond my family was in-the-know, and I moved through that week in Arizona very aware that I felt different. Very aware that for the first time in six months, I blended in. (Spoken like a true, middle class white woman living and traveling in dominantly white parts of America.)

How did that feel? It felt like I was really and truly on vacation. Away from home and away from cancer.

I felt something very different the other week when I passed a woman wearing one of the “cancer hats” I once wore. I felt an invisible solidarity—invisible even to her since I no longer look like a cancer patient. And I wanted to make our solidarity known. I wanted to say, “I know what you’re going through.” I wanted to say, “I’m not like everyone else who is pretending not to notice the scarf on your head and what it means. I’ve been there. (And really, I’m still here, with a summer of radiation to go.)”

So how does it feel to no longer look like a cancer patient? It feels good. It feels like I am now more than a breast cancer patient. But it also feels like an important part of my life and my identity has gone underground.

Those with cancer carry mixed feelings about words and phrases like “survivor” and “battling cancer.” For me, the phrase “battling cancer” never resonated. I never felt like I was at war with cancer. I feel (hence the name of this blog) like I have been “riding the wave” of breast cancer, letting it carry me to new highs and new lows and trying to trust that I would end up exactly where I was meant to be. But I realize that when I passed the stranger in the cancer hat, what I felt was a desire to share my own breast cancer “battle scars.”

No longer looking like a cancer patient makes me realize that I will forever be someone who had breast cancer. (I will forever be someone who had breast cancer. How surreal that feels at times.) And it makes me realize that, strange as it may sound, I will wear that part of my identity with pride, perhaps because it makes me feel like a survivor. I get the complexity of labeling those of us who survive “survivors,” as if the more than 40,000 women who will die of breast cancer this year are somehow less-than. Let me be clear: I think every woman with breast cancer is a survivor, whether or not she outlives the disease.

I feel like I am living something that most people will never truly understand. And so when I pass someone who very likely does understand, I want to shout, “Me, too! Me, too!” I want to swap stories and tears and hugs and newfound wisdom. I want to feel what I imagine most of us want to feel: Like I am seen. Like I am understood. Like I am not alone.

On the Mend…. Just in Time for Round 3

The night we got back from the Grand Canyon, I was covered in red dust, and I attempted to wash the dirt gathered above my eyes, only to discover that it was not Imagedirt but my eyebrows returning. My eyebrows were finally growing back! Two weeks later, there is no confusing them for dirt. I also have eyelashes again, along with hair on my other various body parts (some of which I would happily do without). The hair on top of my head has been growing for a couple of months so that I assume people not in-the-know no longer see me as a cancer patient. Instead, I am simply an aging woman with a full head of gray.

It’s been weeks since my son has cringed when I go hatless.

And more recently, he and Sophie both have stopped carefully, tenderly, wonderfully making certain that they don’t accidentally sip out of my glass or use my towel for fear of exposing my chemo-suppressed immune system to their germs.

In other words, so much is changing. I am on the mend.

But here’s the thing. A few days after my surgery, when I asked Harrison how he was doing about my breast cancer and whether he wanted to talk about anything, he said, “I feel pretty good. I mean, it’s almost over!” And at the time, I thought, “It’s almost over, my children aren’t worried anymore!”

But it turns out it isn’t almost over.

Yesterday I got the news that I will, indeed, need radiation, which means:

  • For the first 6 weeks of summer, instead of spending lazy mornings with my kids, I’ll be hauling myself to the hospital Monday through Friday for treatment. (Or if I choose the lazy mornings, I can forgo an afternoon outing with kids for an afternoon outing to radiation.)
  • I won’t be spending those two weeks in July at the beach with my family.
  • I can’t expose my upper (radiated) body to the sun. How does that work in east-coast summer?
  • And then there’s the fact that rather than being over and done with this breast cancer “journey” in the next several weeks, I’m looking at another 6-8 months at least, because I can’t continue with reconstruction until 3-6 months after I finish radiation. (Here’s where I start up again with the self-judgment for choosing reconstruction. Am I being vain instead of sane?)
  • To make matters worse, finishing reconstruction might mean (worst case scenario, but still a 30% chance) another major surgery: if the radiation damages my reconstructed breast, and I decide I still want a reconstructed breast, I’d need to start again. Starting again would mean going to Boston for an even more major surgery this time (here’s where I start to reconsider reconstruction altogether, which would lead me down another path lined with challenging implications); a surgery that would use my own body tissue, and hence affect multiple body sites, to build a new breast from scratch.

I knew this was likely. And yet, since I was diagnosed in October and told by the radiation oncologist that we wouldn’t know until after my surgery whether I’d need radiation, I’ve been holding out (so much) hope that surgery would be the end of treatment for me. That come summer, I’d be celebrating, not gearing up for my next round in the ring.

I’m feeling pretty sorry for myself tonight. I hate feeling sorry for myself. It’s a more pathetic-feeling flavor than “sad.”

And when I think about Harrison’s “It’s almost over,” my heart just aches for him. Maybe it still can be almost over for him and Sophie. Maybe this next round can fall on me without it also falling on them.

The two of them (turning-7-next-week-Sophie, and half-way-to-10-Harrison) are as happy as ever, and sometimes, I am struck by how amazing that is. Amazing that someone as unhappy as I was as a kid managed to grow up and make this incredibly blissful life for myself, and two incredibly blissful kids. Amazing that we’re making it through my breast cancer with that bliss intact—and maybe even blossoming.

Soon enough, that bliss will overpower the feeling sorry for myself. But damn, right now things sure do feel sucky.

A fight with Josh, my bald-head, and being in love

Josh and I had one of our rare “fights” a couple of weeks ago. “Fights” in quotes because I’m not sure we can really call it a fight. Our “fights” tend to be more of a brief turning away from the other: someone snaps, the other person snaps back or storms off, and usually within the hour, there’s an apology, an explanation of what was really going on beneath the snap, a hug, a commitment to be more this or less that with one another, a mutual acknowledgement of how much we love each other and of how very lucky we are to have what we have—including a relationship that is filled with passion but not much turbulence.

When we got married 10 years ago, we each wrote a letter to the other which we shared for the first time during our ceremony. In my letter to Josh, I included part of a journal entry that I had written nearly four years prior, on February 1, 2000: I have been deeply affected by someone today, and it is almost unfamiliar, the intensity of it. I am deeply aware of how other-worldly this thing feels. “I could go places with you,” I said. And I feel that so completely, it is startling. My eyes have been opened to something. I have seen what is possible.

 For fifteen years now, Josh and I have been nurturing “what is possible,” and perhaps that is why, where we once slammed doors and screamed at the tops of our lungs and stomped around in anger and in hurt for hours (days?) on end, we now move in and out of our shared and individual space with much more compassion and forgiveness and grace.

Which doesn’t keep us from hurting one another now and again, sometimes intentionally, sometimes because of a temporary lack of awareness, of which we were both guilty during this most recent fight.

We were getting ready to go out to a party. A real-life, actual party, which is the opposite of what I’ve been interested in doing these days; despite the fact that I have always loved a good party, lately, the thought of big crowds and small talk has been at the bottom of my wish list. So I wasn’t going to go. But Josh would be playing music (guitar, singing), and I didn’t want to miss it. And as the party came up in conversation with this dear friend and that dear friend, I found myself getting excited for something like this for the first time since my breast cancer diagnosis.

So here I was getting ready for my first big party in months, and I didn’t know what to do about my hair—or lack thereof. At first I planned to wear the wig I bought months ago only because it was covered by my insurance. The wig that I have only donned once since losing my hair in the beginning of December because it makes me feel like an imposter, like I am trying to be someone else, someone without cancer. (Which, let me be clear, I think is absolutely, positively, 1000% appropriate and understandable: that someone with cancer and without hair would want to sport a wig and move through the world as NOT a sick person. But for whatever reason I have yet to fully understand, wearing a wig—unless it’s an obviously-not-real-hair-bright-purple-wig—has not been for me.)

I didn’t want to wear the wig. I wanted to wear nothing (on my head, that is). But I was terrified to wear nothing. It’s been below freezing for months now. I cover my head everywhere I go, inside or out, with either a winter cap or what I refer to as a “cancer hat,” so that now I feel utterly naked with my head exposed. And yet, it has started to feel important to expose my head. Soon it won’t be freezing; and already, there have been times when I have been hot but have hesitated to remove my hat. I don’t want to be hot because I am afraid to remove my hat. I don’t want to do or not do anything because I am afraid. (As I write this, I am compelled to share the fact that twenty or so years ago, I shaved my head by choice… though “shaving” really meant the closest of buzz cuts. I tried unsuccessfully to pull up a photo. Picture me with chubby cheeks and black stubble across my scalp…. which now compels me to to share that today, my slowly-growing-back-hair is almost entirely white.)

So as I stood in front of the mirror a few Saturdays ago, putting my wig on, pulling it off, putting it on, pulling it off, I was trying to figure out whether I had the courage to “own” my bald head. And when I turned to Josh, asking him what he thought about me going to the party bald, he hesitated and gave a mild, “Whatever you want to do, honey.” That’s it: a little hesitation and a mild response, that was all it took for me to shut down. I went silent and cold (but still bald! I’m proud of that!), and we kissed our kids and my mom and left the house knowing we were in one of our fights.

As planned, we stopped for a drink, just the two of us, and this is what transpired: Josh, my love, my love, explained what was behind his cool response. That every time he sees me with my “cancer hat,” he sees his mom, who wore a similar hat before she died of ovarian cancer nearly seven years ago, at the age of 63. That of course he thinks I should go bald if I want to go bald, that he thinks I’m beautiful and courageous and strong. But that sometimes, he wants to forget that I have cancer. Sometimes, he can’t believe that cancer is pressing up against his life again. Sometimes, like in that moment when I asked about going to the party bald, he wished he could cover it all up and make it all go away.

Listening to Josh, I immediately softened, and just as quickly as our “fight” happened, our fight was over, and we were squeezing each other’s hands across the table, and I was telling him how grateful I am that he responded the way he did to my bald head, because it led to this conversation, and that I was so sorry he’d been seeing his mom in me all these months that I’ve worn that damn cancer hat, and that I want him to talk with me more about the thoughts and feelings I know he tries to protect me from, like his fear of me dying like his mom died, and that I was so sorry I haven’t checked in with him more these last weeks, and that I love him, I love him, I love him.

Image 5And then Josh and my bald-head and I went to the party. And while I can’t say that my breast cancer went away for either one of us that night, we both had the kind of fun we used to have before this crazy cancer-journey started.

On Being Bald

My son covers his eyes anytime he sees me with my head uncovered. My baldness makes him uncomfortable. I don’t blame him, and I do my best to wear a hat in front of him. But part of me wants him to get used to this new me. To be at ease with me no matter what. Plus, I think his averted eyes touch the part of me that isn’t entirely comfortable—and I want to be at ease with myself no matter what.Image 4

The other night I went to a dinner party with mostly close friends. Getting ready, I was tempted to wear one of the wigs I bought several weeks ago but have only worn once or twice. Once again, I chose not to because somehow, wearing a wig makes me feel like an imposter. Like I am trying to pretend I don’t have cancer, that I’m not in chemo, that I don’t have a hairless head (not to mention a hairless many other things). Mostly, I don’t want to pretend any of those things. So once again, I wore one of my “cancer scarves” instead. I “owned” my cancer.

Until I was at the dinner party with one of those infamous hot flashes. Part of me so desperately wanted to bare my head. Not because the heat was so unbearable, but because I wanted to really own my cancer. I even slipped into the bathroom and slipped off my scarf to try it out in the mirror. Did I have the nerve to do it? To walk out of the bathroom fully unveiled? I didn’t. I felt too exposed. Too naked. Though I’m not even sure whether my discomfort had more to do with me, or more to do with how others might feel in my naked presence. Would my friends want to avert their eyes like my son?

IMG_5128Today I took a bath with my six-year-old daughter. “You don’t feel uncomfortable seeing me without my hat?”

“No, but I still think you look weird.”

I love weird and I love her six-year-old honesty and I love that she is just as at ease with me now as she was before cancer changed our lives. Maybe the next time I want to take my hat off in public, I’ll think of her.

Watching my children ride the breast cancer wave

A word (or fifty) about the children. I realize I haven’t written about them for a long time and that of course people wonder how they are. Short answer: I really think they’re fine. Good and happy and fine.IMG_0042

Longer answer: For one, I think it’s been incredibly positive for them to have my parents here. To have two more adults who love them and make them feel safe and are fun and make this time that is a cause for worry also an opportunity for something special—their grandparents living with them, all of us together under the same roof, harmonious (97% of the time!), for almost two months now, enjoying an experience we would otherwise never have. I imagine Sophie and Harrison will always remember this time, not just as when Mama had breast cancer, but also as the time that Amma and Zayde lived with us.IMG_5088

In the beginning of all this, I was more concerned about Harrison because he was resistant to talking about anything having to do with my cancer—didn’t want to ask questions, didn’t want to be near any conversations—and was clearly keeping feelings inside that would come out in whispered side comments. (“Maybe you’ll be okay”; “Sophie, you’ve heard that word ‘cancer’ before because that’s what [grandma] Ran-Ran died of”.) Sophie, on the other hand, was more transparent, asking a lot of questions, bringing up the cancer whenever it crossed her mind (or so it seemed); and so I trusted that whatever she needed to process was getting processed. (That she’s worried about the cancer. Doesn’t want me to be sick. Wonders whether kids can get breast cancer. Can she tell her friends. Will I please tell her when the cancer is gone. And so forth.)

But in the last weeks, I have felt more at ease about Harrison. I think he’s still more burdened because, or so I assume, he’s older and has a better understanding of the complexities and uncertainties. But he’s talking more, and of his own accord. I’ll share a couple of brief conversations we’ve had in the last few weeks, conversations that often happen at night when I’m tucking him into bed (not unusual with children, I know, to bring things up when they are quietly decompressing their day and their thoughts).

I always tell Harrison and Sophie the day before I’m getting my next chemo treatment, let them know that I might not be feeling well again for awhile. Two plus weeks ago, before my last AC infusion, I was kissing Harrison goodnight when he said he didn’t want me to get chemo. He said, “I’m not so worried about your breast cancer anymore because you’ve pretty much convinced me that you’re going to be okay. But I worry about the chemo because I don’t want you to feel so sick.” We talked for several more minutes until he signaled that he was done, and I left feeling relieved that 1) he’s not really worried about the cancer anymore and 2) he’s talking with me more.

I almost always wear a hat to keep my bald head warm. Every once in awhile I’ll get hot (rare these days!) and take it off; or of course it’s off when I’m getting in and out of the shower. Recently when Harrison saw me with my hat off, he hesitantly expressed some discomfort, saying, “It just makes me feel IMG_5747a little funny seeing you without your hair. It’s so different and it reminds me that you’re sick.” Again we talked for a bit, and since then I try to keep my head covered around him. Then the other night, again when I was tucking him into bed, he gently tugged at my hat. I didn’t understand at first what he was doing, but then I asked, “Do you want me to take my hat off?” He said, again a bit tentatively, “Yeah, it still makes me a little nervous, but I also want to be reminded sometimes of what you look like now.” So of course I took off my hat and asked if he wanted to touch my head, which he did, and then he said, “Okay, you can put it back on now.” It was a tender exchange that again left me feeling like, “My boy is okay.” (And sweet as can be.)