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.

Roller Coaster

These days, I feel like my friend’s almost-teenage daughter who says, “I can’t stop crying, and I don’t know why!” I feel like myself at fifteen when I used to slam doors and stomp on stairs and sometimes even scream, “I hate you!” at my mother. I feel like a roller coaster, up and down, round and round; like 100 marbles spilling and spinning on a hard floor; like the site of an alien invasion or a hostile takeover or a tornado.

One day, I’m my happy self. The next, so full of rage I can’t stand to be in my own skin. One hour, sitting in sadness. The next, laughing.

I assume this is the Tamoxifen taking my body by storm. (Tamoxifen blocks the hormones that fed my estrogen and progesterone positive cancer. I’ll be taking it for the next five to ten years–but hopefully adjusting to it much sooner than that!) People have reminded me that I have other good reason to be angry and sad and anxious. (Breast cancer; and months and months of breast cancer treatment.) While I do not doubt that there are many factors at play, whatever is happening with my emotional body somehow feels physical, chemical.

The good news is, I’m not depressed. I feel further and further away from that deep, dark, hole I was in a couple of weeks ago. Sure, I feel a little crazy! Sure, I feel totally at the mercy of the wind. (What new emotion is going to blow in now?) But maybe because I’m not 15 anymore, I’m better able to enjoy the good and let the harder stuff pass on through me. At least, that’s what I’m trying to do.

Several weeks ago, in response to one of my posts, my mom sent me this card.

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In this moment, when the wind is calm, I feel like, “Okay, so I’m a little emotionally unstable these days, I can roll with that.” But when the wind picks a more challenging pace or direction, it does get harder to not kick and scream and fight back.

I’ve been working extra hard (with very mixed results) on letting the wind carry me—working hard not just because of whatever is happening emotionally, but because this is a week of huge transition, and for me, transitions often lead to grasping. To me wanting things to slow down or stop or be a certain way. And so I keep whispering to myself, “Trust. Let go. Trust. Let go.”

Transition #1: The end of school for my kids, which is bittersweet: As always, I welcome summer, but it feels especially hard to let go of 1st and 3rd grades (and of Sophie’s and Harrison’s amazing teachers). As I anxiously anticipated the last day of school (yesterday), I realized that part of my grasping is because I feel I’ve missed out on so much of the school year. And now “poof,” it’s over, my kids are a year older, and we’ll never get this time back.

Transition #2: My parents fly back to California tomorrow. What do I say about my amazing parents? They both put their own lives on hold so Josh and I could move forward with ours. When I was first diagnosed with breast cancer in October, Josh was in his second and final year of an extremely intensive graduate program to become a Physician Assistant. We assumed he’d defer for a year, but instead, my parents moved in with us to take care of the kids and of me through those awful months of chemotherapy and then again for those awful weeks of recovering fromImage 2 surgery. (And today we all screamed with joy because Josh passed his Boards and is now a certified PA! I am in awe of my husband and more in love than ever—what he accomplished amidst my breast cancer, and all of it while also being here for me every step of the way.)

I am also down on my knees grateful to my parents (who are long divorced, by the way, but neither of them could stay away, and so they—we—made it work, beautifully, all of us under the same roof for two months in the winter and another two months this spring). My parents who have been parents to my own children these past months, doing everything that needed to be done for a 6 and a 9 year old. My parents who have helped parent me back to health, doing everything that needed to be done for a 40 year old women with two young children and breast cancer. Thank you, Mama and Poppy.

Transition #3 has been less of a transition and more a time of uncertainty, as I met with various doctors to figure out when and where and for how long I would be doing radiation—and feeling like my life was once again on hold until I figured it all out. Yesterday I got the news: I can do radiation at my local hospital. I start on Monday and will go every weekday for 28 days.

My goal now is to let the wind carry me there and back and wherever else it wants me to go. My goal is to minimize the grasping, the door slamming, the roller coaster rides—but also to try and go easy on myself, knowing it ain’t always easy to keep steady in a storm.

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.

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.)

Depression

I wrote yesterday’s post at two in the morning Saturday, and it feels important to share what happened next.

A couple of hours later, I woke Josh to open the childproof bottle of meds I hoped would finally get me to sleep. I’m struck by the little things I can’t do, like hold a bottle in my two hands and press down hard enough to make its top turn; and by the little things that are coming back, like once again being able to roll my wax ear plugs between my two palms to soften and shape them before using. Who knew that tiny action would be too painful in the days after my surgery?

I finally fell asleep around five Saturday morning. The longer I lay sleepless in the dark, the darker the dark felt. When I woke around 11 a.m., I felt more than sorry for myself. I felt bottom. For the first time since my breast cancer diagnosis, I felt deeply depressed. Couldn’t-get-out-of-bed-all-day depressed. Everyone-around-me-worried depressed. Depressed like I used to get as a teenager and young adult, when I would fall so far down the hole of despair, I honestly thought I would never re-emerge. Thank goodness I’ve learned I always re-emerge, and so the darkness never gets quite so all-encompassing, nor does it last for days on end like it did in my past. But yesterday felt darker than it has in years.

And then I did something I don’t do, or at least not very often. I prayed. I thought about how I once heard that, before finding her way toward enlightenment, Byron Katie was deep into the depths of despair and sleeping on a floor somewhere when a cockroach crawled over her; and in that moment, something happened, something shifted, something—everything—changed for her. For some reason, remembering that story—and feeling as desperate as I might feel were I sleeping on a floor with cockroaches—made me think I should pray.

A funny thing is, the whole time I was praying (which honestly, wasn’t very long, a few minutes tops; and I did it from my fetal position on the bed, not on knees with praying hands or anything like that); but the whole time, I thought about how I was doing it wrong. (Funny because of course I, Type-A perfectionist, felt like I couldn’t even pray right, but really, is there a wrong way to pray? Maybe there is. Like I said, I’m no expert.) Basically I just begged for help. Silently, in my head. Please child namasteplease please make this better. Please please please give me the strength to get up. I said I felt totally stuck, that I felt like it was all my fault for being totally stuck, that I was being weak and dramatic and infantile, that I didn’t know how to make it stop and again: please please please. Help me, show me what to do to get out of this deep darkness, out of this bed.

And something happened. I wish I could say I’m enlightened now, but no, it was nothing like that. But I did feel a physical fluttering in my body, up and down my chest/lung/belly area, like a beam of light swooshing through me. And maybe five, ten minutes later, I was sitting up. Still feeling beaten down and quiet and sorry for myself, but like I could pick myself up out of my dark hole and go downstairs at 6 at night for the first time all day (to the couch, to watch a movie with the kids, no serious tasking or talking, but still).

I imagine this post will be lost on two kinds of people: those who have never known depression. (Were I one of those people, I imagine I’d think, “what’s the big deal, just get yourself out of bed.”). And those who don’t believe in something bigger than ourselves. (I used to be one of those people until a dozen or so years ago when I started developing a spiritual path. And when I was one of those people, I basically thought, “Yeah, right, that’s ridiculous,” about experiences like the one I’ve just shared.)

Interestingly, of all the things I’ve written, this story about me praying is one that feels harder to share. I’m not sure why, but it makes me feel especially vulnerable (strange, not the part about feeling depressed, just the praying bit). So much so that I’ve thought about keeping it just for my private journals. But if I’m brave enough to pull myself out of the darkest hole, I can be brave enough to post a little something about praying.