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.

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.

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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.

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.)

Moving forward: Finally starting treatment!

Today I finally got all the necessary appointments in place to start chemo on Tuesday. I feel such relief at FINALLY having a plan and finally moving forward with it.

I also got the call today that I am BRCA negative. Sigh of relief—for me and for my children.

With the frenzy of doctor’s appointments over the past few several weeks, and the uncertainty about my test results and treatment plan and schedule, I have been literally unable to see or plan past a couple of days out. My friend Nuni wisely said that perhaps it was a good opportunity to live in the present. True. And yet, the uncertainty has caused a level of anxiety that I hope settles now that I will (hopefully) have a more predictable schedule and routine (never mind that the schedule and routine will include chemotherapy and sickness). Striking how much I crave predictability, as it turns out.

IMG_4914With the frenzy of the last weeks, I have also been frenzied with Harrison and Sophie. Today I made a commitment to myself to focus on the positive with them. To take a breath before I let my own stress come out on them with nagging criticism. To instead name the plethora of WONDERFULS about each of them. ESPECIALLY now, that’s what I want them to have from their Mama.