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.

IMG_2260

Asymmetry, Grief and Love

When I look at my naked body in the mirror, I cry.

For days, I’ve been trying to write this post, but I can’t seem to get past that first line. Where do I start? How do I attempt to unravel the layers of emotion that have formed over these past couple of weeks since my second surgery?

Let me start with some facts: The surgery successfully addressed what turned out to be a seroma, not a hematoma. (As far as I understand, the main difference between the two is that a seroma is essentially a collection of clear fluid whereas a hematoma involves blood. Both can apparently lead to Dolly Parton sized breasts.)

Recovery was, as expected, quicker and easier with this surgery than with my mastectomy. I was up and about after the first week. Unfortunately, because of the seroma, I needed a drain. If you’ve never had a drain, trust me, you don’t want one. I forgot to take a picture of my own drain, so I scrolled the internet to give those who’ve never seen one an image of what I walked around with for the last couple of weeks (and for three weeks after my first surgery).

drainMy drain was attached to my bra with a safety pin not this nifty looking eyelet. The long tube that disappears under the bra is inserted into the skin. Then, every day, I (and by “I” I mean Josh, because he usually did it) got to empty and measure the fluid like this (though my fluid was less blood red and more serus):

empty drain

Today was a good day because, after two weeks, I finally got the damn thing out, which means I no longer have to walk around with a plastic tube and container attached to my body, collecting fluid from my wound. Bulky and gross and a great way to feel like a sick person.

As for what else I hoped to accomplish with this unexpected surgery—symmetry and a regained level of comfort in my body—that did not come to fruition. My reconstructed breast (and nipple) is now noticeably smaller than my healthy breast. That, coupled with the physical scars, makes me… well, it makes me cry. I feel ravaged, ugly, older than my years (the post-chemo gray hair isn’t helping); and every time I look in the mirror, I am reminded of what I’ve lost and what I’ve been through and what lurks on the horizon as my new, biggest fear (recurrence, metastasis, telling my children I have a cancer again, missing out on all the things I don’t want to miss in their lives).

But here is the amazing thing: Despite all this— the disappointment, the self-consciousness, the crying, the fear—I generally feel happy.

Growing up, when I was having a hard time about something, my mom would say, “Go somewhere else on the canvas.” Meaning life is like a giant canvas, with, say, one group of friends in one little corner, an aspect of work in another, a particular family member somewhere else, an aching back up top, cancer down below; and that whatever the pieces of our lives might be, there are, for most of us, many of them. When one piece of the canvas bogs us down, it doesn’t mean the entire canvas has to go down with it; we can move our attention elsewhere. For the most part, this is easier said then done for me, but by some miracle, the grief I feel these days in my moments of crying is confined to those moments of crying.

canvas

This morning, I crawled into bed after my follow-up with my surgeon and had another tear-fest. I cried for all the reasons I’ve shared, and because I now need to decide whether I’m going to have yet another surgery, purely elective this time, to achieve some symmetry. There is no rush to this decision, but it weighs on me with the same guilt and shame that weighed on me when I had to decide about reconstruction. I feel ashamed by the thought of choosing a surgery I don’t need to “fix” something I don’t like about my body. Why stop with my reconstructed breast? Why not suck some of the fat out of the saddlebags I’ve always wished away? Why not erase the bags under my eyes? Tighten up my knees, which I’ve always found a bit saggy? Certainly these are choices that many people make, but they are not choices I ever thought I would make. Yet here I am considering what feels like a similar kind of choice, and it weighs on me. I would never, ever begrudge another woman for choosing reconstruction after enduring the traumatic loss of a breast, but I am struggling to find that same compassion and understanding for myself.

Time to go somewhere else on the canvas. I think I’ll linger for awhile in the fact that I am more in love with Josh than ever before, and that to feel that way after 15 years is incredible. Josh, who lies down with me in the middle of the day and tells me, while I cry, that he wants me to feel whatever I’m feeling, but then to remind myself that we will get through this, one foot in front of the next, just like we’ve gotten through everything else. Josh who sings to me, “You are beautiful, in every single way;” and who, after this latest surgery, wouldn’t let me off the couch for days after I felt like I could once again help with the kids and the house; and who is patiently waiting for me to watch Big Love and then read side-by-side in bed like the wonderfully old married couple we are.

heart love

Another Surgery

I need to take on the uncomfortable task of writing publicly about my breasts again. (“Need” isn’t quite the right word. I want to keep people informed, and right now, that requires some explicit boob-talk.)

Dolly Parton during "Steel Magnolias" New York City Benefit Premiere for the American Diabetes Association at Cineplex Odeon in Century City, California, United States. (Photo by Ron Galella/WireImage)Two weeks ago, the night my family and I returned from our glorious, much-needed, post-breast-cancer-treatment and summer vacation, I discovered that my reconstructed breast was suddenly Dolly-Parton big. (Okay, maybe not quite that large, but compared to what I’m used to, it certainly feels that way.) I contacted my plastic surgeon who didn’t seem concerned, and since we already had a follow-up appointment scheduled for two weeks later, he said he would take a look then.

Over the next few weeks, I felt discouraged by how awful I felt—exhausted, light-headed, headachy. “I haven’t felt this bad since chemo,” I kept saying to Josh. “Is this what my nine months of recovery is going to feel like… This bad?!”

On Thursday, I finally met with my plastic surgeon, and he scheduled me for surgery the following Wednesday (two days from now). He thinks that radiation likely caused a hematoma: a broken blood vessel that leads to [Dolly Parton-sized] swelling filled with blood. A hematoma can also cause anemia, which explains how awful I’ve been feeling. (“Imagine you’re having three periods at once,” were his exact words. In other words, significant blood loss and all the resulting symptoms.)

I’ve written about my struggle to decide whether or not I wanted to do reconstruction, and if I did, what kind. After much back and forth, I decided to do implant reconstruction the day of my left mastectomy. I also decided that 4-6 months after radiation (the standard wait time), I would most likely have one more “small”/out-patient surgery to reconstruct my nipple and to put a smaller implant in my healthy breast, so that I feel more even. (You can read about a recent conversation with my 7-year-old daughter to learn more about the current state of my “uneven” breasts.)

My surgeon said that, since he has to operate now to address the hematoma, and since my skin has recovered so well from radiation, he could finish any other reconstruction at the same time and hopefully avoid another surgery. On the one hand, I’m nervous (among other things) about not waiting the recommended 4-6 months—recommended because radiation can continue to affect the tissue for that long with unknown end results. (My surgeon seems pretty darned confident that things will be fine, and I’m choosing to trust him… because I do trust him.) On the other hand, I’m holding onto the idea that this hematoma is a blessing in disguise—that it will give me the opportunity to be done, done, DONE with breast-cancer-related procedures now, versus six months from now.

done

I feel utterly different going into this surgery than I did going into the last. Perhaps it’s because I now have a surgery under my belt. Perhaps it’s because it’s all happening so fast that I don’t have much time to fester and fear. Perhaps it’s because this feels like no big deal compared to the loss of my breast. Perhaps it’s because there’s actually some relief with this surgery—the hope that I’ll feel more comfortable in my body again, both emotionally and physically. (Trust me, a boob filled with blood does not feel good, on any level!) There’s plenty coming up for me, and perhaps I’ll explore some of that in future posts. But mostly, I’m trying not to think too much. Trying to notice, to name, to put one foot in front of the other, to trust that my steps are taking me wherever it is that I need to go.

Some logistics: I have to be at the hospital this Wednesday, September 6 at 6 a.m. Surgery is scheduled for 7:30 a.m. It should take about 2.5 hours and the hope is that I can go home by evening. My surgeon said I should plan to be down-under for about a week, then slowly doing things from home, and hopefully back on my feet after week two. My godmother is coming from the Catskills on Tuesday to be with the kids until they go to school on Wednesday; and then with all of us for a few more days while I recover. Another blessing in disguise: it takes so long for Josh’s PA licensing to come through that he can’t start his new job for at least another month, so he can be 100% at the kids’ and my sides for this next hurdle.

“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.
image

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.

This Week’s Digest

I have a bad habit of torturing myself with what has come and gone. It often sounds like this: “Last week at this time, I was waking up on vacation; now I’m…” “Last month at this time, I was getting ready [for something wonderful]; now it’s over.” I’ve done a fair amount of looking back during my breast cancer treatment, not always to torture myself, but rather to reflect on and take note of all the changes in my life and in my body.

Lying in bed this morning, my mind did a lot of, “Last week at this time…” and I’m happy to say, that today, I came out on top.

Last week at this time, I was struggling to get out of bed mornings and sometimes not getting out of bed much at all. Now, even though I admit it often feels hard upon waking to face my life and my day, I do get up, every single time, and once I do, I feel okay. Sometimes even joyful. And either way, more solid.

Last week at this time, I was barely moving my left arm, never lying on my left
Image 1side, and wary of hugs. Now I am still tender on and a bit protective of my left side, but
I can reach and lift and hug and carry again.

Last week at this time, I was still more exhausted post-surgery than I was through chemo, and when I got out of bed, it was to spend most of my day on the couch. This week, I went for three, two-mile runs. I also went to the farmer’s market and bowling in Shelburne Falls and to a school assembly and out to lunch with friends, and this weekend, I am going to the mountains with my family.

Last week, I cried in my radiation oncologist’s waiting room, so desperate to be done with all of this, so desperate for things to be a little easier. This week, I took it in stride that I have to go to Boston (a couple of hours away) for another opinion about how to proceed with radiation. (My radiation oncologist is torn about whether or not to radiate my lymph nodes. Torn about whether the risk that would bring to my heart and lungs outweighs the risk of cancer recurrence. I’m trying not to think about that too much—that those are my options: either potentially damaging my heart and lungs or potentially dealing with breast cancer again.) And I am taking it in stride that if I radiate my lymph nodes, and if my heart is too close to those nodes, I may have to do my radiation in Boston (where they have a machine for better protecting the heart). Getting treatment in Boston would mean figuring out how to spend most of summer there since I can’t (or won’t) drive four hours every day for six weeks of radiation.

Last week at this time, I was physically and emotionally stopped. Now, I am on the move again, slowly returning to a life outside the confines of my home and my head.

Approaching the Light

Everything stops me these days. Stops me from getting out of bed. Stops me from writing. From answering the phone, returning a text, taking my vitamins, eating something green. Everything either takes too much effort or too much courage.

But I think I’m getting better. No, I know I’m getting better, because on Saturday, Image 4I spent the whole day enjoying (for real, not for-fake, enjoying) my daughter’s 7th birthday (we now have two rabbits: Coco and Peppermint). And even though I spent most of Sunday back under the covers, on Monday, I started taking my vitamins again. (On Tuesday I started taking my Tamoxifen). And yesterday, even though I woke up and watched TV for 3 hours straight, for the first time since my surgery I ALSO did something while I watched; rather than simply lying like a still, stopped blob on the couch, I worked on a photo project on my computer.

And then, for the first time since my surgery, I went for a real walk (not a sick person’s, let me amble up and down the street, so I don’t get bed-sores kind of walk, but a real walk, all the way to my local hospital (Cooley Dickinson) and back, where I’ll be doing radiation. (And where, by the way, I met my radiation oncologist, Dr. Bornstein, who I absolutely, positively adore. How did I get so lucky with these amazing practitioners?)

But before I knew how amazing Dr. Bornstein is, I sat in the waiting room and cried like a damned fragile cancer patient. The type of cancer patient that made the nurse especially kind and gentle, and I loved her for that, but I also wanted to scream, “I just started being this fragile! I’m NOT USUALLY this fragile!”

“I just don’t want to do this,” I explained to my husband when he put his arm around me in the waiting room. All these months, the only other time I’ve cried in a doctor’s office was 2 days after my diagnosis, when the surgeon told me I’d need a mastectomy. Since then, I’ve been green with nausea and dizzy with fatigue, but I’ve never been like this. Never depressed. Mostly, I’ve even been chipper. “You’re in awfully good spirits for someone who just had a terrible first round of chemo and is back for more,” my oncologist commented back in November. And I was. I was in genuinely fine spirits, month after month after month of breast cancer treatment.

But everything stops me these days. Not in a “Let me breath and appreciate the moment” kind of way. In a “How does one go on?” kind of way. In a “Oh my god, every single tiny thing is so fucking overwhelming, how can I even begin to wrap my head around… anything? Taking my vitamins much less taking the time to prepare anything healthier and more time-consuming than a bowl of yogurt or a piece of toast with peanut butter much less taking care of my children? And how about the stacks of mail and how will I ever manage a career again or the fact that I feel six years old inside: small and frightened and utterly dependent and wanting to be loved and feeling so filled up for a fleeting moment when someone shows up just to love me (thank you, oh my goodness, thank you, to those of you who have been showing up with a call, a card, an email, a visit, just to love me a little); but not being able to love myself and pushing people away for not loving me enough or in the right way and then feeling abandoned and angry and hurt and: Stop.

Not everything stops me anymore. I am getting better.

At today’s doctor’s appointment, I laughed in the waiting room. And during my appointment, Dr. Parikh (my beloved plastic surgeon; I still can’t believe I, one, have a plastic surgeon, and two, adore my plastic surgeon) said I seemed better. He said my eyes sparkled with life again. Then, after he examined me, he rejoiced at my recovery and gave me the “all clear” to start radiation. (“Yay?” Yes, “Yay,” because the sooner I start radiation, the sooner I finish.) He gave me the all clear to lift my left arm (gently, slowly, to a certain point); to lift more than a half gallon of milk if my body feels like it can lift more than a half gallon of milk; to run a mile if my body feels like it can run a mile.

greener-pastures
He gave me the all clear to stop stopping. And I am ready. Ready (I hope, I hope, I hope) to get out of bed, out of my head, out of my house, out of this depression.