A Conversation with my Son

…Which I am sharing as a way to share what happened with my surgery last Wednesday, October 14:

“How’d it go today?” Harrison asked, somewhat tentatively. He’d spent the afternoon at a friend’s and was now lying next to me in bed.

Big breath. “It was hard,” I answered, just as tentatively. And then, worried that he would take that to mean there was a new medical concern, I said more. “It’s nothing at all for you to worry about. But they couldn’t make me a new breast, so now I don’t have one. I wasn’t prepared for that. I’m very sad.”

“Does that mean you’ll never have breasts?”

 “Well, I still have one. I’ll need to decide whether to have another surgery to make me another. But if I don’t have another surgery, no, I’ll never have a breast.”

 “Oh. I’m really sorry, Mama.”

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I can’t muster much more than that, other than to say that I am grieving and I am angry and I am rather shut down from the world.

And so it continues…

I feel like this:

head against wall

And this:

rage

And this:

crying baby

Last week, I was finally getting back on my feet: got the okay to exercise again and ran for the first time in a month; hired a sitter and danced a night away; embarked on my first big work trip in ages. But instead of truly getting back on my feet, I got another seroma. I’m having surgery, again, this Wednesday.

I was already feeling a swirl of emotion before my breast started swelling and throbbing again:

I was feeling daunted by the long road ahead of me toward a full recovery—feeling my lack of strength and stamina, my inability to exercise like I used to, to travel without ensuing exhaustion.

My surgeon says that this time, he doesn’t want me to exercise for at least 4-6 weeks. The road is feeling even longer, even more daunting. People assure me that I’ll get my strength back, but I’m not so confident. I am no longer the 36 year-old who ran 20-25 miles a week, often in 8-10 mile stretches, while working and parenting and socializing and dropping down for 20 push-ups when I felt like it. I’m now the 40 year-old who has been beaten down by a year of toxic treatment and two going on three surgeries and who can barely get through 3 miles at a snail’s pace; and when I do get through 3 miles at a snail’s pace, I then need to lie down on the couch to catch my breath and make sure my legs don’t buckle beneath me.

Even before this most recent seroma, I was feeling like people were done with my cancer, and I don’t blame them. It’s been a year, and trust me, I’m done, too. Except I’m not done.

I’m not done because I need to have yet another surgery and then who knows how many more after that, because who knows why I keep getting seromas and how to make them stop. But even before this latest medical frustration, I wasn’t “done” because as good as I am at feeling grateful for all the wonderful aspects of my life, I am also just on the other side of thinking I was going to die, young. And I am all too aware that I still could. That 30% of women with an early stage breast cancer diagnosis develop metastatic breast cancer. That my young age only increases my odds: More years during which my cancer could come back. For better, but also for worse, life will never be the same for me (or so I imagine, and so I hear from other women who have walked a similar road). I imagine I will forever feel the shadow lurking in the corner.

What, then, does “done” really mean? Will I ever be done with breast cancer?

Harrison expressed similar concerns when Josh and I told the kids this morning about this next surgery. It doesn’t help that Harrison turns ten next week and my breast cancer is, for the second year in a row, a dark shadow over his birthday festivities. But he said that even though he was disappointed about his birthday, that wasn’t the main upset.

IMG_2251“It just seems like it’s never going to be done,” he said again and again. “I want it to be over, and it feels like it’s never going to end.”

What is there to say to that other than, “I know” and “I feel that way, too” and “I’m so sorry you have to deal with this”? Of course I said all the positives I could, as well. But I am careful not to tell my children that I am going to be fine and that everything is going to be okay, because of course there is no way to know what will be.

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“What do your breasts look like now, Mama?”

Snuggling with my 7-year-old daughter after reading her a bedtime story, she asks, “Mama, what does your breast look like?”

Suddenly I remember: I thought I saw her watching me on the beach when, back turned, I changed out of my wet suit. “Are you asking because you saw me without my shirt today?”

Nod.

“You can look if you want.”

She lifts the top of my shirt enough to peer at what’s beneath it.

She wants to know how they made my new breast.

I hesitate long enough to gather my response. This is why, when neither of my children asked questions before my surgery, I didn’t share any details about what was going to happen–because how do I explain a mastectomy to a 7 and 9 year old without it sounding terrifying? Of course I don’t want to say anything about cutting off a breast. Scooping out the insides doesn’t sound much better, but I can’t think of how else to answer Sophie’s question. “Well,” I manage. “They took out the stuff inside my skin and then put something else in there to make it look like a breast.”

“Oh, I get it. This one without a nipple is up and a little hard,” she explains, gently patting my new, left breast, “and this one is mushy and down.”

I smile at her language and her matter-of-factness. Smile because she’s described my breasts perfectly and without a trace of self-consciousness, the way only a child would do; and because she seems so okay about it all, no big deal. Relief. I’ve been anxious about this moment–about my kids seeing me post-surgery.

But I am also flooded by the old guilt and doubt that plagued me all those months during chemo when I was struggling to decide about reconstruction. Have I failed my daughter by deciding in the end to go through with it? Taught her that a woman isn’t a woman without breasts? I remind myself of all the other ways I’ve failed her, then–by wearing make-up and studying myself in mirrors and buying clothes I don’t need–and somehow that comforts me; rather than feeling badly about the make-up and mirrors, I remember that the fate of the whole world and of women’s rights and of my daughter’s self-confidence and of my son’s respect for women and girls does not rest on whether or not I chose to reconstruct my breast.

Still, I tell Sophie that I had to decide whether or not I wanted a new breast and that for a long time I thought no, but then I changed my mind. I want her to know it wasn’t a given, getting a new breast. “Lots of women choose not to,” I explain.

“What do they look like?” she wants to know. Such good questions.

“Their chests are flat, maybe even a little concave, which means it goes in like a dent where the breasts used to be.”

She’s on to the next question: “How come you changed your mind?”

I’m thinking about the fate of the whole world again, and I want to choose my words honestly but carefully. “Well, I thought I might feel more comfortable with two breasts, and after everything I went through, I wanted to feel comfortable in the end.” The truth is, I’m not comfortable now, with two very different breasts, but I don’t tell here that. I do, however, tell her that at some point, after I’m all healed from radiation, I might make them look more even. Do I tell her because I’m preparing her, while the opportunity has presented itself, for more upcoming changes with my body; or because I’m embarrassed by my body, even with my 7-year-old daughter, and want to assure her that I won’t always look like this?

Again she wants to know how–how will they make my breasts look more even?

“They’ll put something small inside this breast,” I say, resting my hand on the healthy one.
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I try to answer each of Sophie’s questions with enough detail to satisfy her curiosity but not too much detail for her 7-year-old self to digest. I am grateful for the conversation–grateful that she feels comfortable enough to ask these questions; grateful that she seems utterly okay with the answers and with my new body; grateful for the quiet openness between my daughter and me.

Pathology Report, Birthdays, Doctors I Adore, and Breast Cancer Be Damned

I realize that a couple of posts ago I wrote about needing radiation without explaining why, which I will attempt to do now. The good news is that the results of my post-surgery pathology report are positive (or so I understand—after getting a medical run-down of the report, I did need to ask, “So, is that good news or bad?”).

As far as the doctors know, they removed whatever cancer remained—and what remained was much smaller than what the MRI showed pre-chemo, meaning I responded well to the chemo. They got “good margins,” meaning there was a good buffer of cancer-free tissue surrounding the extracted, cancerous tissue, reducing concerns about any lingering cancer cells being left behind. There was no cancer in my lymph nodes. There was, however, scarring in one of my lymph nodes, which is a sign that there might have been cancer there before the chemo eradicated it. Which is both good news and bad: good, of course, that the cancer has been eradicated; bad because knowing it might have been in one of my lymph nodes was the tipping point for needing radiation. (Though my understanding now—which was not my understanding in October when Josh and I first met with the radiation oncologist—is that radiation likely would have been recommended regardless, because of how young I am and how wide-spread the cancer was throughout my left breast.) The radiation is meant to kill any free-floating cancer cells that might remain.

What else is going on this week? Pretty much I alternate between tears and rage; bed and couch (or a doctor’s office).

My baby girl (who isn’t a baby anymore) turns 7 on Saturday, and I always make a big deal out of birthdays. But this year, it looks like I won’t be able to pull off very much. On Tuesday night, I was slammed with pain like I hadn’t felt since the hours just after my surgery. As careful as I thought I was being, apparently I overdid it. So I’m back on more or less total bed rest. I must have slept for 20 hours yesterday, all doped up again on pain meds. I’m feeling better physically today but terrified about doing too much and hence 1) postponing my healing even more and 2) missing out altogether on Sophie’s birthday celebrations.

I can’t say that the increased pain, bed rest and narcotics have done much to improve my emotional state.

I saw my oncologist, Dr. Katz, on Tuesday, who is starting me on my 10 years of Tamoxfin. Maybe it won’t be a big deal at all. Or maybe it’ll give me massive mood swings and hot flashes to top off all the other joys of the last seven months.

When I asked about our next appointment, she said she’d see me again in about 3 months. “Three months?!” I exclaimed, with great disappointment. (I would rather 3 weeks. Or 3 days.) I really like Dr. Katz. She is smart and direct and patient and kind and makes me feel like I am not only in the best of hands, but that I am a real-life human being about whom she genuinely cares. I actually look forward to seeing her, which is a big deal, because I can’t think of when else I’ve looked forward to going to the doctor.

Though I might be looking forward to seeing Dr. Parikh, my plastic surgeon, tomorrow. (I say “might” only because I’m pretty sure he’s going to tell me he can’t take out my surgical drain yet, which brings me back to the tears, rage, couch and bed.) I like him as much as I like Dr. Katz: a lot. The first time I met him, he blew apart all my stereotypes about plastic surgeons. He, too, is kind and patient and humane on top of very smart and very good at his job. What ultimately put me at ease about my surgery was knowing he would be in the room with me. (Which is to say nothing at all negative about the surgeon who performed my mastectomy. He, too, struck me as surprisingly kind and gentle for a surgeon—there I am exposing my stereotypes again—and he apparently did an excellent job. I would recommend him (Dr. Arenas) in a heartbeat. But I only met him once, briefly, whereas I met with, emailed with, even ran into Dr. Parikh often; which is why his presence, like Dr. Katz’s, feels like a safe place for me to land these days.)

ImageMy bed is a safe place to land, as well, but I sure am getting sick of it. Why this didn’t happen during chemo, I don’t know. Why I traveled through the first 6 months of treatment feeling more or less okay (and sometimes even strangely wonderful) emotionally, and am now hitting a wall, hard, I don’t know. But that I am: hitting a wall, hard. I am sick of the inside of my house. Sick of being so unavailable to my kids. Sick of feeling crappy. Sick, sick, sick of breast cancer. (Thanks, Greg, for the “screw cancer” poster.)

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.

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.)