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.

My First Support Group: What Some of Us with Breast Cancer Really Feel

I went to my first breast cancer support group last night. I’ve never been one for organized group activities—guided tours, support groups, church. Even committing to scheduled exercise classes proves challenging for me. So it’s taken almost four months to get myself to this support group that meets at the (amazing) Cancer Connection just a few blocks from my house.

I am so glad I finally went. I spent 90 minutes hearing my own feelings (which have often felt odd and wrong) reflected back to me in the words of seven other women with—or just on the other side of—breast cancer.

As emotionally “good” as I felt in November and December, there was also a lingering guilt. A what is wrong with me that I have breast cancer and I’m happy? kind of guilt. And then, as I started to feel better physically, the “what’s wrong with me voice” intensified. What’s wrong with me that my emotional state is plummeting now that I’m feeling better physically? What’s wrong with me that I’m mourning the loss of those earlier months when I was so debilitated? What’s wrong with me that I’m in no rush for this whole experience to be over?

Last night, one woman after the next expressed what I have been feeling. To my right, a woman about my age talked about the mixed emotions she feels as she faces her final chemo infusion and the end of her cancer treatment next week. Now what? She wondered. To her left, another young woman toward the end of radiation and cancer treatment echoed similar sentiments. She talked about how all these appointments have become her routine, and that in some strange way, she’s going to miss them. She’s going to miss seeing the same nurses every week. Miss the attention and the care she receives from the people in her life.

I talked about how I don’t want my life to go back to normal, back to the way it was. That I want to be changed by this experience. That I feel such a sense of loss when I feel the old slipping back in; such mourning when I think about all of this being over and forgotten.

Across from me, a woman who finished treatment in the last several months said her friends want and expect her to be fine now, and she feels like she’s just starting to grieve. She said that listening to the rest of us talk, she realizes that the reason she’s struggling emotionally is because everything and everyone around her has gone back to normal, but that is the opposite of what she wants.

The what is wrong with me? voice slipped right away in that room.

A friend of mine who spent last year in treatment for breast cancer told me some months ago about a photograph hanging on her fridge. It’s of her and her two daughters when she was in the middle of chemo. “I’ll never take that picture down,” she said. “I never want to forget that time.”

I’ve clung to that story in the last several weeks, as I’ve started to feel better physically and less so emotionally. And when my friend and I walked last week, I asked more about it, hoping that my desire to hold tight to this cancer experience was something she might understand. (After all, it’s not what one is “supposed” to feel. We’re supposed to push through to the other side, as quickly as possible. Surrender to a crappy year, then move on, grateful it’s over.)

My friend very much understands—very much knows—the desire to hold on. And as I’ve just discovered, so do many other women with breast cancer. So it turns out that my feelings aren’t as strange as I thought. (Suleika Jaquad, who writes about her leukemia in an award-winning New York Times’ column, is someone else who complicates the concept of “getting back to normal” post cancer.)

I suppose this is a reason for support groups. Maybe I’ll sign up for a guided tour somewhere and even start going to church. 🙂