What to Expect Post Treatment

Oh, the things I’ve learned as a breast cancer patient.

I went to my first support group in February 2015, about five months after my diagnosis and four months into my six-month chemo regimen. It was the first time I heard women talking about how hard the end of treatment can be. Who would have thought that diagnosis and debilitating chemo and terrifying surgery would NOT be the hardest parts for so many women? Not me. Not until that first support group. And not until I experienced the struggle firsthand.

A few weeks ago, I picked up After Breast Cancer: A Common-Sense Guide to Life After Treatment by Hester Hill Schnipper. Though still technically in treatment (now with just one week of radiation to go!), I felt better physically, but my emotional life was twisting me in knots. It felt time to read the book that had been recommended to so many women before me in support group.

My first night with After Breast Cancer, my internal voice screamed, “I’m not crazy! HA! I’M NOT CRAZY!” (I’ve debated that often in the weeks that have followed, especially as Tamoxifen has turned me into a swinging pendulum of “I’m so anxious I’m going to explode” to “Hey, life is great!” to “RAAAAAAGE” to “I’ve never cried so much in my life and still, I can’t stop crying.” Good times—for all of us in my household.)

keep calm not over

Here are a few of the things I’ve learned from Schnipper—and from firsthand experience as a breast cancer patient:

  • The majority of women (that surprised me) have the hardest time after treatment.
  • As women with breast cancer slowly return to our “normal lives,” intense overwhelm is so common, it’s to be expected. (Can you hear my, “I’m not crazy!” voice?)
  • The rule of thumb is that it takes women at least the length of time to regain our physical well-being as was the duration of our treatment. Schnipper says to count the months between the day of diagnosis and the last day of chemo, post-surgery drugs, radiation—whatever the end of treatment might be—and expect at least that long to feel our old, physical selves. (I was diagnosed on October 22, 2014 (one day after my son turned 9) and finish treatment next Thursday, August 6 (one day before my 11th wedding anniversary), so by next May I might be “back to normal?”)
  • Schnipper says it takes even longer to recover emotionally.
  • She also says friends and family are following a different calendar, one that expects that, “Yay, you’re all better now!” Support tends to fade. Expectations tend to return more quickly than we’re ready to meet them. This, of course, can intensify feelings of overwhelm, isolation and, well, crazy.
  • Some studies show that patients who have undergone chemotherapy score significantly lower on cognitive functions even ten years post treatment. (Sweet. So my frequent inability to retrieve words and form a coherent sentence just might stick around for a-long-while longer.)
  • “What sexuality?” (Enough said?)

In an earlier post, I wrote about the fact that experience brings knowledge. I never expected to amass so much knowledge about breast cancer, chemotherapy, radiation, mastectomies, breast-reconstruction.

I never expected to feel my mortality so acutely at such a young age.

But neither did I ever expect to feel as loved as I’ve felt over the past year. I never expected to test the power of gratitude as I have and to learn firsthand that it does in fact dampen fear and loss. I never expected to feel such a deep, unending strength, a strength that, no matter what happens, will get me through to the other side (of life, of this post-treatment struggle, of whatever “other sides” I might face), feeling whole.

I am not your next statistic

Touch me.
I am a real person.
I am not your next statistic. I am not your next appointment,
something to be crossed off a list
once you’ve prescribed your meds and followed your protocol and
check check check
did everything you’re supposed to do when dealing with a breast cancer patient.

Touch me.
I feel different than the breast cancer patient who just left,
different than the one who will sit in this chair when my slot is up.

Follow your protocol
but don’t forget that you are treating people.
Real live human beings.

Were you taught that humans have two ears and two eyes and two legs, a nose, a heart? Have you noticed that that isn’t always the case? Have you noticed that even when check, check, check, we have two ears, eyes, legs, they look different?

Touch me.
And then: See me.
And then: Listen to me.

I am human,
and you, doctor, work for me.

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.

15 Random Facts About Me

Blogger Nancy Stordahl shared 15 Random Facts about herself on her breast cancer blog, and encouraged her readers to do the same. I love a good list—so satisfying to write one up, plus it’s been great to read what others have to share about themselves: the non-breast-cancer things that show that each of us is so much more than a breast cancer patient.

So here’s my list, 15 Random Facts About Me:

  1. I’m an only child and have always hated it, which is why I knew I’d have at Image 2least two kids when I grew up (with or without a partner because that’s how much I wanted kids, but I lucked out and got a great partner along with two great kids). Also, when each of my kids were born, I was so overjoyed that I forgot to check whether they were a boy or a girl. (I also lucked out there, since I wanted—and got—at least one of each.)
  1. I’m politically left of center. Way left. A socialist at heart who would give up my white middle class privilege if it would even the playing field. I come by it naturally: my parents gave me my middle name, Binh, after Madame Binh—a Vietcong leader in the war.
  1. When I was six, my mom gave me the closet in her office. I carried in pillows, a lamp, a small bookshelf, and I went there to write. I’ve been writing ever since, and I’m pretty certain writing is what saved me from my teens and twenties. In fact, I’m pretty sure writing is still saving me today.
  1. I’ve had dark circles under my eyes since I was a very little kid. As a teenager, I was somewhat convinced that if I could just get rid of those dark circles, I would be happier, more confident, more loved. Along with the dark circles, I’ve always thought I had fat knees and so (until very recently when a friend convinced me to embrace my legs, imperfections and all—thanks, Cory), I’ve avoided showing my legs. (Fat knees?! Ridiculous, I know, but there you have it.) As a mother, I am careful to never let my children (especially my daughter) hear such things come out of my mouth (except for the part about it being ridiculous that so many women decide we don’t like this or that about our physical appearances).
  1. I don’t wear earrings and a necklace at the same time; nor do I wear earrings or a necklace when I wear my glasses. Though it doesn’t bother me on other people, on me, it makes me feel like way too much is going on. (How’s that for a random fact?! I’m thinking it will make a great trait for one of the fictitious characters I hope to create someday in the young adult chapter book I hope to write someday.)
  1. When I was 19, I flew to Kenya for 3 months of solo travel in Africa and Europe. According to my mom, I said I had to go because I was afraid of being alone. I don’t remember this, but I like the way it sounds. I like thinking that at 19, I was that committed to taking on my fears. (Not surprisingly, my mom didn’t want me to go, tried to talk me out of going, and yet, didn’t stop me from going, even though she probably could have by refusing to help pay for the plane ticket—kuddos to you, mom. I hope I’ll be equally brave when Sophie wants to do something ridiculous like travel through Africa by herself at 19.)
  1. I hoard food in my freezer (often until it goes bad) and rarely leave home without a snack tucked into a pocket. Also, when I travel by car or plane, I bring enough food for a small army to subsist for days. One can never be too safe.
  1. I’ve always felt like an imposter. Straight A student, prestigious colleges, successful career, published author (though not the type of books I’d really love to write), and yet, I’ve spent my life anxiously waiting for people to realize my real strength is fooling the system.
  1. I love to read, but I’m not particularly well read (which adds to my feeling of being an imposter). Really, I love to read contemporary fiction. When it comes to the classics, pop culture, history, politics, I am more ignorant than I like to admit. (Okay, I have no problem admitting my ignorance about pop culture, but the rest is toward the top my list of shortcomings, way above the dark circles under my eyes and the “fat” knees.)
  1. I am totally overwhelmed by and somewhat terrified by social media. Overwhelmed by the endless rabbit holes of possibility; terrified about the whole Big Brother thing. (I mean, can you see me right now through the camera hole in my computer?? How about through the hole in my bedroom ceiling?) Plus, the bottom line is, I much prefer face-to-face contact or even a phone call in real time with a real voice and real person on the other end of the line. I wish I could be in the same room with the many awesome breast cancer bloggers I’ve stumbled across these past months, because I can’t seem to keep up on line but sure would love to sit around a room chatting with many of them.
  1. Despite my fear and overwhelm, I am starting a Twitter account! Today! Let’s see how I fare… Please be patient with me, since I have very little idea how it all works. (Will you follow me? And also share any tips you might have for managing this new, overwhelming, terrifying endeavor?) Maybe I’ll join Facebook next, but woa! One thing at a time here, people.
  1. I grew up in San Francisco in the Mission long before it was cool to live in the Mission; long before it became a hub for all those Google Silicon Valley folks who drove up the rents so that most people I grew up with can’t really afford to live in the Mission anymore.
  1. I spent my twenties in New York City (Manhattan then Brooklyn) where I partied hard and loved hard; where I worked as a cocktail waitress and a regular-ole food waitress before going back to school to study education and teach in public schools; where I met the love of my life and birthed my first child and carried my second until, at 7 months of pregnancy, I moved, joyfully, to my first small-town (with husband, son, in-utero baby, a truck load of stuff and big dreams for a calmer lifestyle in tow).
  1. I love to dance and am proud that I am often among the last ones standing IMG_1111come 3 a.m. (Dance party or not.) I actually was a dancer until I was 18, but now any opportunity to shake it on the dance floor, preferably to hip hop, gets me going. (And no, I don’t usually wear a wonder woman costume, but this was the only picture I could find of me on a dance floor. It must be 3 a.m. since I seem to be one of the only ones around.)
  1. Image 3Nothing brings me more joy than connecting (for real connecting) with another human being. That, and having a great time with my kids. And, top-of-the-joy-list #3, which really is also about connecting: knowing that something I’ve written has made a difference in someone’s day, life, head, heart. (Thank you, Sophie—my 7 year old love bug—for the attached artwork that, in my mind, pretty much sums up the most important stuff in my book.)

What I’ve Learned About Radiation

When Harrison was just 10 months old and experiencing his first summer at the DSC02297beach, I could almost see his brain growing with every new experience, every new vision and sensation. He’d point to the crabs scurrying along the shore, and I’d point back, saying, “Crab.” We’d climb on a boat, and I’d say, “This boat is going to take us on the water.” He’d sit in the sand and watch the gulls diving for food; or throw rocks from the shore and watch them make wrinkles in the water, and I would think about the synapses in his brain making connections, vocabulary, knowledge.

That summer, I thought often of the second graders I used to teach in downtown Manhattan, most of them from Chinese immigrant or Latino welfare families, many of whom had never left the several block radius of the neighborhood. They lived and shopped and schooled and played on the same concrete streets of NYC that were but a fraction of my own experience with the world. At less than one year old, my own child was seeing more of the world than many of them ever would, and I knew that as a result, Harrison’s brain and their brains would grow in very different ways. First as a teacher, then as a parent, I saw how much hands-on experience brings knowledge.

This is what I thought about during my first days on the radiation table (which IImagelie on without the red hospital gown in the picture, but bearing my soul on the internet is one thing; baring my naked chest quite another). Lying on the metal slab, my arms reaching behind my head into the pre-planned mold I now climb into every Monday through Friday, my head turned toward the right, chin slightly up, staring at the ceiling made of those old-school white squares with dozens of grey holes splattered throughout that remind me of depressing office buildings, or in this case, a hospital basement—I would think about Harrison’s first summer at the beach and how much his brain grew: crabfish, seaweed, lifejacket, tides.

Experience brings knowledge, and I would scroll through my expanding information-base. “What new radiation fun-facts have a I learned so far?” I would ask myself (not really thinking any of them were fun, but I’m trying to stay positive, and a little lightness helps).

I’ve learned that radiation therapists carry a ruler, so that every day during set-up, they can measure the distance between the beams and the body parts, making sure everything is aligned correctly.

I’ve learned that those of us who go through radiation bear the pencil-tip sized tattoos that tell the radiation therapist how to line up our bodies each day. And though the tattoos are tiny, they really bother some of us. I simply don’t like the black dot between my two breasts, resting there like a bull’s eye. (Getting my other three tattoos was emotional and much more painful than a shot, but they don’t stare back at me when I look in the mirror, so I don’t find them such a nuisance.)

I’ve learned to lie very, very still and that radiation (at least mine) truly is quick-quick, so that I am usually in and out in 30 minutes or less.

I’ve learned that the beams of green lines this way and that on my upper left quadrant mean the machine is setting up, and that when it seems the machine is doing nothing at all, it is radiating my body.

I’ve learned that I can’t shave my armpit for risk of a nick leading to infection.

I’ve learned that, like chemo, the effects are cumulative. My slowly reddening skin will likely look and feel badly sunburned by the end. (If I’m lucky, that will be the worst that happens to my skin.) And though radiation-fatigue is nothing like chemo-fatigue, I can expect a steady decline by around week four.

I’ve learned a long list of lifetime risks, and I’ve learned that they usually cross my mind when I’m lying on the radiation table, but that otherwise, I am pretty good about not thinking about them.

I’ve learned that radiation dehydrates, which is why they think I was having such severe head rushes—and severe changes in my blood pressure and oxygen levels—every time I sat or stood up. (On doctor’s orders, I spent a couple of days guzzling Gatorade, which seems to have fixed me right up.)

I’ve learned to protect my radiated skin from the sun; that swimming in fresh water may or may not be okay depending on how my skin reacts; that sitting in a wet suit is a no-no, as is going in chlorinated pools. I’ve learned which lotions are okay to use, and to apply them three times a day but not for at least four hours before radiation, or they need to clean it off before my treatment.

I’ve learned once again that kindness buoys me, and that the radiation suite at Cooley Dickinson Hospital is full of kindness, so that most days, I come and go with a smile and a heart full of gratitude, because I am seemingly surrounded by angels who are carrying me through this doozy of a brain-growing experience.

(By the way, I’ve also learned that chemo-brain is real, so it’s a good thing there’s some new knowledge coming in, since it seems a lot of the old knowledge–i.e. my vocabulary along with my ability to orally string words together into coherent sentences–is seeping out.)

Crashing in the Wave

I stumble over my answer to the question, “How are you?” because I don’t really know what’s going on with me these days. Except that I’m not fabulous. Some hours I’m not even sure if I’m okay. But then I think maybe I am, after all. (In other words, there are all kinds of confusion, not to mention all kinds of emotion, swirling around on my insides.) How can someone (me) who analyzes and reflects upon and over-thinks just about everything not even know how I feel?

Last night, I told Josh, “I feel separate from everything.” Not in a woe-is-me, no-one-understands kind of way. In an I-feel-like-I’m-in-a-haze kind of way, and I can’t even access myself, much less fully engage with the world or people around me. At times, I feel like a wax figure, fake-experiencing my day.

Except mostly it’s not so neutral-numb-feeling, because I also feel like my whole body is a grasping fist. (I am trying, oh how I am trying to let go, to let that wind carry me, but I feel like I am in an almost constant state of contraction.) Every – little – thing – overwhelms me. How is it that prior to my breast cancer diagnosis, I was working close to full time, more or less single-parenting two kids while my husband put in his 80-100 hours/week of grad school, engaging in a busy social life, making home-cooked meals and paying bills and cleaning my house and returning phone calls… and now, I can barely get my kids a cup of water without feeling like there is too much on my plate? That’s a bit of an exaggeration, but only a bit. I’m not working and my husband is home for the summer, so my main commitment is co- (not single) parenting and getting to doctor appointments, and yet (here it is again): every little thing overwhelms me.

HeadOnDesk But here’s the other thing that scares me: I’m not keeping up. I’m used to overwhelm, but I’m also used to that overwhelm making me highly productive. Thanks to my Type-A personality and fairly constant free-floating anxiety, I’ve gotten a lot done in life (successful career, happy kids, hand-made gifts, clutter-free home). So the fact that it takes me days to listen to my voicemails (I’m so sorry) and that the other day someone emailed my mom looking for my new address because I hadn’t gotten back to her (nope, no new address here) and that I haven’t read the newspaper in weeks (just keep looking over my shoulder as I slide it into the recycling bin, hoping no one will catch me being terribly uninformed while also unnecessarily destroying trees)—well, it’s disconcerting.

For decades, I have longed to be less Type-A because I have longed to be less anxious, more laid back, more able to, say, sit still rather than being in constant-doing-motion. When I was in chemotherapy and as still as I’ve ever been in life, I had one of those “cancer changes you” commitments to once and for all live a slower, simpler, calmer life. I say this because, if dumping my unread paper in the recycling bin and letting people wait before getting an email response was making me more relaxed, I’d rejoice. But the fact is, now I am anxious and unproductive… which only makes me more anxious. (Not to mention bummed out that my cancer-commitment to change my life isn’t working out so well these days.)

And just about everything gives me yet more reason to feel anxious. Like finding this blog that I absolutely love: Invasive Duct Tales. I literally (yes, literally, not figuratively) feel like I am reading my own writing at times. Which sounds egotistical, that I love it because I love my own writing; but I love it because I feel like I’ve found someone on the internet to whom I can relate—someone who makes me think, “Me too!” And of course there is comfort in that. But reading it yesterday, I suddenly felt the opposite of that expansive-love-feeling; I felt that contracted-anxious feeling, because she’s a successful blogger with awards and gazillions of followers and cancer-has-opened-unexpected-doors opportunity and me, all I am is a wax-figure lump surrounded by unopened mail. (You really should check out her blog, though. In fact, I thought about simply including a link to her most recent post in lieu of composing my own since I felt like 92.4% of what she wrote could have been describing me, including the fact that her husband is named Josh—that, and how she describes her mood, and her reference to “riding the wave” which is how I’ve described my cancer experience and hence titled my own blog, really did make me wonder for a second whether I had somehow gotten confused and truly was reading my own writing.)

Writing this post has me thinking a few new things:

  • I sound like I am describing a depressed person, which is eye-opening, since I’ve really felt like I wasn’t depressed anymore; but maybe I have a touch of it after all.
  • Does this post really have to do with breast cancer, and isn’t that what I’m supposed to be writing about here: riding (writing) that wave? Have I derailed? And either way, aren’t people sick of hearing about my emotional state? I can add that to my list of anxieties. I’m (sort of) joking.
  • I actually think my current state has everything to do with breast cancer. With my hormone treatment. (I’m going to keep blaming it on that, okay? It makes me feel less pathetic, less like it’s my fault that my family has to put up with irritable, unpredictable me.) With the fact that I don’t feel comfortable in my body anymore and even wonder whether reconstruction was a mistake. (I’ll save that for another time because I can’t handle opening that door any wider right now.) With my fear that the cancer will come back. With the fact that I look at my daughter and wonder, “Will she have to go through this some day?” With the fact that my body feels tired and old and broken down by months of treatment and even though everyone keeps saying I’ll get my stamina and strength back—that, for example, I’ll be able to run faster than an 11-minute mile or more than 3 miles in a row again—I’m really not so sure.
  • It’s time to get back to my gratitude practice.