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.”

Image 35

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.

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.)

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.

From the Other Side of Surgery

The last ten days has felt like a trip through multiple time zones. I have moved in and out of emotional states quicker than I could land in any of them. I have also moved in and out of full anesthesia, followed by regular doses of pain meds; so that, coupled with the time-zones-slash-emotional-states has left me blurry and, to be honest, grasping for solid ground.

But let me back up and share, first, that all-in-all, I am feeling much better than expected post-surgery. Certainly physically. I have minimal pain. Some discomfort, especially at night, but nothing I (pain-wimp) can’t handle. I also have more mobility than expected. After three nights of sleeping half-sitting up, I can now fully recline and even lie on my right side. I have been warned by others who have traveled this road to be very careful. To do less than I think I can do. To not reach for that glass in the cupboard nor comb my children’s hair. Though because I didn’t have a double mastectomy, I can do both of those things with my right arm. Mostly, though, I lie in bed or on the couch and (I admit) watch a tremendous amount of TV. I haven’t been able to make much sense of my book. And until today, I haven’t been able to face the blank page to write. I have gone for one or two (very) short walks each day. (Starting in the hospital when I walked to the end of the hall and back. Who knew how exhausting that could be.) And tonight I ventured out for my first big event: the breast cancer support group at the Cancer Connection. Just being in that room made a difference in my emotional state. Yesterday was a dark-cloud kind of day. Today I felt some light.

But let me back up again. To my family’s return from Arizona. (Oh what an amazing trip. Oh how I long to be back there.) After months of dreading the arrival of my surgery date, all I wanted was for it to come already, so I could stop the waiting, the anxious, anxious waiting. By Tuesday night, I was almost excited to wake up the next day and go to the hospital. Relieved (to finally be done with the waiting) is a more accurate description, but relieved almost to the point of excitement. And I was calm. I composed a blog post in my head that I never did write; it went something like this:

I am not carrying fear to the hospital tomorrow. I am ready. I will be thinking about: (And here I posted, in my head, a series of pictures, which perhaps I will post, for real, tomorrow, when it is no longer the middle of the night: the Arizona red rocks; my closest Northampton women friends gathered around a dinner table with me two nights before surgery; some kind of adorable picture of my children; perhaps a bird being carried by the wind.)

I took my children to school Wednesday morning. I came home with just enough time to watch the slew of selfie-videos texted by my beloved Brooklyn crew. And then I drove with Josh to the hospital, with Maggie following behind in her car and my parents behind her. I met what turned out to be a most remarkable surgical Image 1team. I might have made inappropriate jokes as the drugs hit and they wheeled me to the OR. I have a vague recollection of referencing Grey’s Anatomy and warning the docs to be on better behavior than the ones on TV. I also remember a giddiness, like I wanted to hang out and drink beer together. And then, moments after taking in the bright lights and metal carts and thinking, “So this is what an operating room looks like,” I was out.

In the hours after I woke up, I remember a few things: eating left over pasta with Josh and thinking it was delicious. Not being able to open my eyes, they were so heavy with fatigue, so talking with closed lids to the medical people who cycled in and out to check on me. When someone checked my bandages, making the conscious decision not to open my eyes because I was too terrified to see my new body; wondering whether I would ever be able to look. Several hours later, wanting to look; looking; and feeling okay—and then feeling such tremendous relief about feeling okay.

All this happened sometime between Wednesday evening and Thursday afternoon. By Thursday night, I was home. By Friday night, my friend Jenae was here for the weekend (by my side along with Maggie, Josh and my parents); and my kids were gone for the weekend (having the time of their lives with my in-laws and nine of their cousins).

And I spent the next several days continuing to travel through multiple time zones and emotional states. I’ve done a tremendous amount of grasping. Wanting to be back in Arizona with my family. Wanting another taste of that giddy feeling I had in the OR; another taste of the relief I felt taking my kids to school on Wednesday morning, knowing I would soon be on the other side of surgery. Wanting time to stop moving so fast. Wanting my children to keep being children. Wanting my friends and family to keep showering me with love. Wanting to land in a time zone, in an emotional state, on my own two feet, long enough to catch my breath.

Today, Tuesday, I think I finally felt some ground beneath my toes.

Let’s see what tomorrow brings.

Eleven Things I Have Learned About Breast Reconstruction

  1. Reconstruction following a mastectomy is totally, completely, 100% covered by insurance in this country, no matter who, when, where, how it is done.
  2. Many people believe this is a great feminist feat. I am more skeptical. I suspect it is a way to minimize the number of women in the room with one or no breasts.
  3. If you choose to do reconstruction, you need to choose between implants or using your own body tissue. And then you need to choose what type of implant, or tissue from what part of your body. And then you need to choose what size and shape and position. And you only have certain choices at certain times with certain treatment plans and certain body types and it seems that every time I think I’ve connected the dots and figured out my options, I’m presented with some other piece of information that brings me back to the beginning.
  4. All of this makes choosing a type of reconstruction feel like a choose-your-own adventure story, where every decision leads you down a different path with different variables. Or maybe in this day and age it makes more sense to compare it to surfing the internet, where every option sends you to new links and new links and new links. How does one ever find her way home?
  5. If you choose not to get reconstruction following a mastectomy, you can choose to wear a prosthetic breast or two; you can buy special bras or can simply sew pockets into the ones you already have, slip in the plastic boob like you might slip your cell phone into the inside pocket of a coat.
  6. My friend’s mom once bent over at the beach and moments later, caught her plastic boob in her hand as it slipped right out of her suit. Apparently she had a great laugh over that one which makes me smile. But it also makes me wary of prosthetic breasts on beaches.
  7. Women who undergo a single mastectomy with no reconstruction sometimes feel off-balance.
  8. Some women are relieved to be rid of their breasts. Some mourn the loss of their breasts, then live the rest of their lives flat-chested. Some never give a single thought to not doing reconstruction.
  9. It turns out I am none of those women. Who knew I would ever have to think about breast reconstruction? Who knew I would end up among those who struggle and second-guess and change their minds and change their minds again before ultimately deciding to replace my breast of 40 years with something plastic.
  10. Breast reconstruction is nothing like a boob job.
  11. Many women who have gone through reconstruction are offended by the often-made comment that it is like a boob job. I am not offended (at least not yet). In fact, I’ve made that offensive comment—luckily only in reference to myself, not to someone else going through reconstruction, and now I know better. Now I also know not to get my hopes up about my new breast.

Sharing the Guarded Facts of My Upcoming Surgery

(I think) I am ready to write publicly about my upcoming surgery.

From the beginning of my breast cancer experience, I have been very open about my diagnosis and comfortable with anyone knowing about it. I have felt rather private, however, about the details of my surgery; for the first months, I only discussed them with close friends. Though many people in my life surely know by now, they have yet to hear from me that on May 20th (just got the date this past week), I am having a left mastectomy.

uncertaintyAnd after months of being utterly torn, undecided, all-over-the-place about whether or not to do reconstruction—and about when and what type if I did reconstruction—I have decided to go with an implant at the time of the mastectomy.

Now I am staring at the blank page, not sure how to go on. Especially after baring my soul in so many other ways these past months and in so many past posts, why does sharing the fact of my upcoming mastectomy and reconstruction feel like one of those dreams where you (or at least I—have you had such dreams?) show up to work, or to the biggest party of the year, or to your children’s school, stark-naked?!

In one of her blog posts, Hareem Atif Khan shares that talking about her breast cancer—and even seeking medical attention at the first signs that something might be wrong—was hard because it meant talking about her breasts. Perhaps it’s because I am an American not a Pakistani woman that I am more comfortable talking about my breasts…. though only up to a point, it seems. I can talk breast  Imagecancer and chemotherapy for breast cancer and even surgery for breast cancer (breast, breast, breast). But talking about my actual breast—no, talking about the removal of my actual breast—suddenly makes me want to cover every inch of my body and point in the opposite direction so that no one will look at me. The real truth is, knowing that people will inevitably look at me and think, “She lost her breast,” made me feel “less-than” (and a lot of other unpleasant adjectives, too).

It took me many hours, days, weeks of thinking, talking, writing, researching, reflecting to get me to a decision about reconstruction. Though it feels like there were dozens of reasons for my uncertainty, I think I can actually pinpoint four of them.

One the one hand, there were my reasons to not reconstruct:

  1. My desire to resist a culture that makes women feel less-than for not looking a particular way.
  2. My commitment to not rush the healing process by trying to replace what is lost.
  3. My fear of surgery.

On the other hand, there was:

  1. My desire to feel comfortable in my body as I move through the world. My fear that I would not. (Is that two reasons?)

It is not that my list of “one” won out over my list of “three.” It is that the thinking and feeling behind my list of three changed.

Reason #1: I still want to resist a culture that makes women feel “less-than.” But I no longer feel the intense self-judgment about not resisting with my own, un-reconstructed chest. (I still don’t fully understand why I’d been so burdened with guilt, seeing as I’ve spent a lifetime resisting plenty on the one hand, but perpetuating the culture on the other with all kinds of behavior, such as donning make-up and high-heeled shoes.)

Reason #2: I still don’t want to rush my healing process. But I no longer feel like immediate reconstruction would be rushing my healing process—presumably because I’ve had more than five months to digest the fact that I have breast cancer and will need a left mastectomy. (Which doesn’t mean I don’t anticipate the need for more healing on the other side of my surgery. It just means that I am in a very different place than I once was.)

Reason #3: I’m still afraid of surgery. Which is why, when I started leaning toward doing reconstruction, I ultimately decided to go with immediate implant reconstruction—because if all goes well, I won’t need any additional, major surgeries (just a couple of outpatient procedures).

(I may share more about my decision-making process in upcoming posts. In the meantime, for more information about reconstruction, you might visit breastreconstruction.org. To read more about the choice to not reconstruct, I highly recommend breastfree.org.)