Abandoning Fear, and Fearing with Abandon

I’ve been avoiding the blank page. I’m okay. Some hours I’m better than okay. But I continue to feel more shut down—both with others and with myself —than I have since I was diagnosed last October. I am carrying on with my life just fine. I get out of bed every morning. I shower and eat and go to meetings and take care of my children. I do what I need to do for work and smile at people on the street. I even laugh at times. But my heart does not feel open the way it usually does.

Over the last year, I’ve thought a lot about what I want to take away from my experience with breast cancer. Just last month, I wrote about how cancer is teaching me to prioritize joy—and to abandon fear in order to do so.

That has not changed.

However, this month I am steeped in a new awareness: I am aware that cancer has also taught me to be afraid in ways I never was before.
fear chasing

As I write this, I am self-consciously aware of sounding depressed and negative. I feel the need to say, “I really am okay.” (And I really am okay.) I feel the need to say, “I’m a very happy, positive person.” (And I am a very happy, positive person.) I feel the need to say, “I know I have much for which to be grateful.” (And I do have much for which I am grateful.)

But I also feel the need to say that right now, I am hurting and scared and angry and uncertain and lonely. I feel the need to say that I feel abandoned, but I don’t know how to let people in.

hurting heart

Crashing in the Wave

I stumble over my answer to the question, “How are you?” because I don’t really know what’s going on with me these days. Except that I’m not fabulous. Some hours I’m not even sure if I’m okay. But then I think maybe I am, after all. (In other words, there are all kinds of confusion, not to mention all kinds of emotion, swirling around on my insides.) How can someone (me) who analyzes and reflects upon and over-thinks just about everything not even know how I feel?

Last night, I told Josh, “I feel separate from everything.” Not in a woe-is-me, no-one-understands kind of way. In an I-feel-like-I’m-in-a-haze kind of way, and I can’t even access myself, much less fully engage with the world or people around me. At times, I feel like a wax figure, fake-experiencing my day.

Except mostly it’s not so neutral-numb-feeling, because I also feel like my whole body is a grasping fist. (I am trying, oh how I am trying to let go, to let that wind carry me, but I feel like I am in an almost constant state of contraction.) Every – little – thing – overwhelms me. How is it that prior to my breast cancer diagnosis, I was working close to full time, more or less single-parenting two kids while my husband put in his 80-100 hours/week of grad school, engaging in a busy social life, making home-cooked meals and paying bills and cleaning my house and returning phone calls… and now, I can barely get my kids a cup of water without feeling like there is too much on my plate? That’s a bit of an exaggeration, but only a bit. I’m not working and my husband is home for the summer, so my main commitment is co- (not single) parenting and getting to doctor appointments, and yet (here it is again): every little thing overwhelms me.

HeadOnDesk But here’s the other thing that scares me: I’m not keeping up. I’m used to overwhelm, but I’m also used to that overwhelm making me highly productive. Thanks to my Type-A personality and fairly constant free-floating anxiety, I’ve gotten a lot done in life (successful career, happy kids, hand-made gifts, clutter-free home). So the fact that it takes me days to listen to my voicemails (I’m so sorry) and that the other day someone emailed my mom looking for my new address because I hadn’t gotten back to her (nope, no new address here) and that I haven’t read the newspaper in weeks (just keep looking over my shoulder as I slide it into the recycling bin, hoping no one will catch me being terribly uninformed while also unnecessarily destroying trees)—well, it’s disconcerting.

For decades, I have longed to be less Type-A because I have longed to be less anxious, more laid back, more able to, say, sit still rather than being in constant-doing-motion. When I was in chemotherapy and as still as I’ve ever been in life, I had one of those “cancer changes you” commitments to once and for all live a slower, simpler, calmer life. I say this because, if dumping my unread paper in the recycling bin and letting people wait before getting an email response was making me more relaxed, I’d rejoice. But the fact is, now I am anxious and unproductive… which only makes me more anxious. (Not to mention bummed out that my cancer-commitment to change my life isn’t working out so well these days.)

And just about everything gives me yet more reason to feel anxious. Like finding this blog that I absolutely love: Invasive Duct Tales. I literally (yes, literally, not figuratively) feel like I am reading my own writing at times. Which sounds egotistical, that I love it because I love my own writing; but I love it because I feel like I’ve found someone on the internet to whom I can relate—someone who makes me think, “Me too!” And of course there is comfort in that. But reading it yesterday, I suddenly felt the opposite of that expansive-love-feeling; I felt that contracted-anxious feeling, because she’s a successful blogger with awards and gazillions of followers and cancer-has-opened-unexpected-doors opportunity and me, all I am is a wax-figure lump surrounded by unopened mail. (You really should check out her blog, though. In fact, I thought about simply including a link to her most recent post in lieu of composing my own since I felt like 92.4% of what she wrote could have been describing me, including the fact that her husband is named Josh—that, and how she describes her mood, and her reference to “riding the wave” which is how I’ve described my cancer experience and hence titled my own blog, really did make me wonder for a second whether I had somehow gotten confused and truly was reading my own writing.)

Writing this post has me thinking a few new things:

  • I sound like I am describing a depressed person, which is eye-opening, since I’ve really felt like I wasn’t depressed anymore; but maybe I have a touch of it after all.
  • Does this post really have to do with breast cancer, and isn’t that what I’m supposed to be writing about here: riding (writing) that wave? Have I derailed? And either way, aren’t people sick of hearing about my emotional state? I can add that to my list of anxieties. I’m (sort of) joking.
  • I actually think my current state has everything to do with breast cancer. With my hormone treatment. (I’m going to keep blaming it on that, okay? It makes me feel less pathetic, less like it’s my fault that my family has to put up with irritable, unpredictable me.) With the fact that I don’t feel comfortable in my body anymore and even wonder whether reconstruction was a mistake. (I’ll save that for another time because I can’t handle opening that door any wider right now.) With my fear that the cancer will come back. With the fact that I look at my daughter and wonder, “Will she have to go through this some day?” With the fact that my body feels tired and old and broken down by months of treatment and even though everyone keeps saying I’ll get my stamina and strength back—that, for example, I’ll be able to run faster than an 11-minute mile or more than 3 miles in a row again—I’m really not so sure.
  • It’s time to get back to my gratitude practice.

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.