Being Apart (Who Am I Now?)

I walked with my friend Keegan today, and as I talked with her about the snow day on Tuesday, and how, sitting around Hannah’s kitchen table, I felt like my old self for the first time since the diagnosis, I realized how much I haven’t felt like my old self.

Neither of those experiences—feeling my old self on Tuesday nor not feeling like my old self over the past months—has been negative. Quite the contrary, I absolutely loved sipping vodka and sodas and talking the afternoon away with a few of my closest friends. Just as I’ve been quite content spending the last many weeks on the fringes of my old social scene, showing up here and there when I’m up for it, leaving when I reach my threshold far earlier than I’ve been used to, not feeling obligated to anyone or anything other than my body and my mind.

But I don’t know that I’ve put words to how much I’ve felt apart from my old life, my old friends. How different I feel when I walk into a room now – not so much from everyone else, though I’m sure that’s there, too; but from my old self. I feel so changed, in ways I haven’t begun to realize yet, ways I haven’t yet named. But I feel it. I feel the shift, like the earth has moved beneath me and I am now standing somewhere else. And that somewhere else is apart from almost everything and everyone I knew before October 22. My friends and family no longer know the same person. (Do they know me at all?) I no longer am the same person. (Do I know who I am? Other than changed?)

IMG_0513I know I love the new space this experience has created, and that I want to hold onto as much of it as possible. To not fill my days with plans. To not fill my body with that racey, I-need-I-want-I-should-I’m-going-going-doing-doing-everything feeling.

I love the freedom to do what I want—and that I am working hard to figure out what, exactly, that is from moment to moment; and then, to honor it. To not live by habit or by reaction but from my own, authentic self.

I love that I don’t feel the same urgency to be a part of everything. That I don’t feel any urgency at all. A twinge here and there, yes, but nothing that doesn’t slide off of me with a breath, all that new space, the new-felt freedom to be and do and discover what I want.

I love that this experience is mine. That I get to be changed. That I get to be apart.

Watching my children ride the breast cancer wave

A word (or fifty) about the children. I realize I haven’t written about them for a long time and that of course people wonder how they are. Short answer: I really think they’re fine. Good and happy and fine.IMG_0042

Longer answer: For one, I think it’s been incredibly positive for them to have my parents here. To have two more adults who love them and make them feel safe and are fun and make this time that is a cause for worry also an opportunity for something special—their grandparents living with them, all of us together under the same roof, harmonious (97% of the time!), for almost two months now, enjoying an experience we would otherwise never have. I imagine Sophie and Harrison will always remember this time, not just as when Mama had breast cancer, but also as the time that Amma and Zayde lived with us.IMG_5088

In the beginning of all this, I was more concerned about Harrison because he was resistant to talking about anything having to do with my cancer—didn’t want to ask questions, didn’t want to be near any conversations—and was clearly keeping feelings inside that would come out in whispered side comments. (“Maybe you’ll be okay”; “Sophie, you’ve heard that word ‘cancer’ before because that’s what [grandma] Ran-Ran died of”.) Sophie, on the other hand, was more transparent, asking a lot of questions, bringing up the cancer whenever it crossed her mind (or so it seemed); and so I trusted that whatever she needed to process was getting processed. (That she’s worried about the cancer. Doesn’t want me to be sick. Wonders whether kids can get breast cancer. Can she tell her friends. Will I please tell her when the cancer is gone. And so forth.)

But in the last weeks, I have felt more at ease about Harrison. I think he’s still more burdened because, or so I assume, he’s older and has a better understanding of the complexities and uncertainties. But he’s talking more, and of his own accord. I’ll share a couple of brief conversations we’ve had in the last few weeks, conversations that often happen at night when I’m tucking him into bed (not unusual with children, I know, to bring things up when they are quietly decompressing their day and their thoughts).

I always tell Harrison and Sophie the day before I’m getting my next chemo treatment, let them know that I might not be feeling well again for awhile. Two plus weeks ago, before my last AC infusion, I was kissing Harrison goodnight when he said he didn’t want me to get chemo. He said, “I’m not so worried about your breast cancer anymore because you’ve pretty much convinced me that you’re going to be okay. But I worry about the chemo because I don’t want you to feel so sick.” We talked for several more minutes until he signaled that he was done, and I left feeling relieved that 1) he’s not really worried about the cancer anymore and 2) he’s talking with me more.

I almost always wear a hat to keep my bald head warm. Every once in awhile I’ll get hot (rare these days!) and take it off; or of course it’s off when I’m getting in and out of the shower. Recently when Harrison saw me with my hat off, he hesitantly expressed some discomfort, saying, “It just makes me feel IMG_5747a little funny seeing you without your hair. It’s so different and it reminds me that you’re sick.” Again we talked for a bit, and since then I try to keep my head covered around him. Then the other night, again when I was tucking him into bed, he gently tugged at my hat. I didn’t understand at first what he was doing, but then I asked, “Do you want me to take my hat off?” He said, again a bit tentatively, “Yeah, it still makes me a little nervous, but I also want to be reminded sometimes of what you look like now.” So of course I took off my hat and asked if he wanted to touch my head, which he did, and then he said, “Okay, you can put it back on now.” It was a tender exchange that again left me feeling like, “My boy is okay.” (And sweet as can be.)

Grasping (How do I “Be. Here. Now.”?)

I feel like I have been (or at least had been) living more in the moment than I ever did in my life before this, not because I’m suddenly more evolved and hence successful at doing what I’ve aimed to do for the past 20 years! But because circumstance has forced me (in a beautiful, welcome way) to be more present. For example, because I don’t know how I’m going to feel from one day to the next, me, the great planner of all kinds of events weeks and months into the future, rarely plans anything at all anymore—and when I do, it’s always with the caveat that it’s tentative. There’s been something so liberating about this for me, one piece of which is that it keeps me in the moment in ways I haven’t been in the past. This state feels almost the opposite to waiting; it feels instead like simply being.

Already I feel this state of being slipping through my fingers. In past posts, I’ve written about how, as soon as I start to feel better, my mind gets busy planning-planning-planning the shoulds and coulds and want tos: I want to finally get that mediation practice up and runnImageing; I want to finally get my long-fantasized writing project off the ground; I want to finally organize 9 years of kid photos and baby books; maybe it’s time to go back to work; how about all those house projects I never have time for; and of course there’s exercising and parenting and cooking and cleaning and laundry and and and and…. suddenly I’m no longer in the moment like I was all those weeks that I was mostly couch bound with only two or three simple options before me for days on end: reading, listening, watching TV.

How do I hold onto the couch-bound, in the moment mind-state as I venture off the couch and back into the world? How does one (how do I) hold onto the many gifts of an experience like this as the experience passes? I know I am far from being through it, but already, I feel how tenuous everything is: life, certainly, but also life’s lessons.

My Beaming Breast (and Other Good News)

Two (very) good pieces of news: First, Taxol infusion yesterday and I’m feeling fine! I was told I might crash tomorrow when the steroids wear off, but that I shouldn’t have any nausea… and after much skepticism about that in the days leading up to yesterday, I’m letting myself believe it, since there have been no signs of it so far. Feels like a small miracle. (Though the longer I’m feeling better, that all-too-familiar, life-long, free-floating anxiety is coming back in full force, my mind busy making long lists of all I want to accomplish.)

The other good news: Today I met with Dr. Katz, my oncologist, who confirms what I felt a couple of weeks ago—that there is no longer any sign of the lump in my breast! After she massaged each breast, lifted each arm, felt for lymph nodes inside my pits (many of you know the drill), Dr. Katz beamed. “This just made my day! All the hell you’re going through is worth it, because the treatment is working!” The fluorescent lights and my left breast and I beamed right along with her.

Closing and Opening Doors

After much inner turmoil, I have decided not to go back to work while I continue treatment—have finally come to accept that not going back to work is acceptable. That even if I wake up on a Tuesday and feel well enough to go out to lunch, it doesn’t mean I should be working. That instead it means I should be going out to lunch (if that’s what I so desire). That I should be using any reserve energy I have to rest, heal, not-stress about work, spend quality time with my children, spend quality time with myself.

It has taken many drawn out conversations with many strong-willed friends and family members for me to finally feel okay about this. So finally, finally, I am letting up on my guilt. Mostly because I feel now in my core how important it is that I experience this experience. I am meditating and writing and trying to simply be. I know it is a tremendous privilege that I have this option. Once again, I am struck by how lucky I am, how grateful I feel.

I am also struck by my fear. Now that I’ve finished my last of the crappy AC chemo infusions (this past Monday) and am feeling better these last couple of days; and now that I’m getting ready to start the Taxol infusions which I anticipate will be much easier (since all the docs and nurses insist as much), I’m feeling like I’ll need (want) to do something with my time if I don’t go back to work. And what I’m really feeling is that I want to (need to) write. Now or never. No more excuses, no more looking to the future, time to take the plunge.

It feels TERRIFYING. Being a writer has been my dream for… ever? What if, when I finally go for it, I fail? And then (most terrifying of all), I am left without any dream at all?

Treatment Check-In: Chemo, Take Two

Two days after my last post on Christmas, I got some version of Sophie’s stomach bug, which lingered pretty much through school break. (That chemo-suppressed immune system again, or so I assume, since I was the only other one to get it in a house full of people, and I’ve never been one to catch those stomach bugs.) I still managed to have a brilliantly happy holiday with Josh and the kids and my parents.IMG_5221

Last Monday, I had my last of four Adromycin Cytoxin (AC) infusions, AC being the one of my two chemo regimens that is apparently much harder to tolerate. As of this weekend, I started feeling more myself physically. (Which mostly means less nauseated all the time; I’m still low energy but especially with all of my wonderful “elves” helping to keep my life afloat, the low energy doesn’t bother me much… except for when I’m struggling my way through a gawd-awful-painfully-s-l-o-w run, and every one of my very sporadic runs these days is gawd-awful-painfully-s-l-o-w.)

Next week I start 12 consecutive weeks of Taxol, the second and last chemo concoction. Taxol is apparently much easier to tolerate. I’m told I’ll still be very fatigued but won’t have the intense nausea. I’m hopeful but also skeptical, since I was also told before starting AC that it wouldn’t be so bad with all the great, new nausea drugs.

So now, I wait. Wait to see how I respond to the Taxol next week. Wait to see if I respond consistently in the couple of weeks that follow. Wait to see what this next phase might entail.

Solitude

alone in houseI’m feeling so introverted—unsocial in a way that makes me wonder whether I will ever be able to relate to people in the same way. I feel separate, like there’s a film between me and everyone else (except for my family and the two friends with whom I’ve been in such constant closeness these last weeks).