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.

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.

Grasping and Being

How easy it is for the grasping to sneak back in—like weeds pushing up through cracks in pavement, but less lovely. Still, I am trying to slow down enough to notice both (the grasping and the patches of green in grey cement).

With the grasping, I am trying: “Look. There’s that anxiety again; the wanting-things-to-be-a-certain-way thinking,” and to keep walking, letting each go as a passing thought that is not-me.

plant concreteWith the weeds, I am trying: “Look! Look at the patches of green in grey cement!” and to bend down and notice the tendrils of stem and leaf reaching toward sky. An image of hope that, had I not slowed down enough to see, would be crushed under foot.

Today is our last day in this wide-open Arizona sky. Our last day surrounded by red rock and hours upon hours with nothing to do but be.

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I am proud of myself for not grasping too hard. It is not uncommon for me to leave before it is time to leave: to inventory all that will soon be “lost”; to mentally transport myself back to the to-do lists waiting for me at home before I actually am home. So I am proud that this morning, when I woke up counting the number of hours until we leave this place (22) and the number of days until my surgery (5), I didn’t crawl down the dark and endless hole lined with accompanying thoughts. Instead, I did what needed to be done (return the pre-registration call from the hospital; leave a message for my oncologist); and what I knew would help (watch my thoughts like an outside observer watching the passing clouds; listen again to IMG_1043_2Belleruth Naparstek’s pre-surgery relaxation CD); and then what I wanted to do (write; play pool—and in the pool— with my family; soak up every last minute of this glorious place and time).

Still, I am aware of how utterly precarious this “just being” is. Sitting here now, I feel the precariousness in my bones; feel how easy for the “just being” to turn into yet another form of grasping—of me trying desperately, desperately to sink into presence. It is like walking uphill at the Grand Canyon. Stunningly beautiful, and so damn hard.

But also an absolute must. (After all, I don’t want to miss out on a “once in a lifetime” experience!) And so, I keep coming back: to this moment, to the passing clouds, to a splash of green pushing through concrete.

To-Do Lists, the Grand Canyon and Gaining Perspective

My wonderful new writing friend asked, in response to my last post, whether I might share what’s on my “fitting everything in before surgery” to-do list. Great question, as I’d love to know what’s on other people’s “fitting in” or “living life to the fullest” or “I’ll feel complete once I….” to-do lists. What do you want to accomplish before you go to sleep at night? Before you reach the end of this life?

I’m big into lists. Ask me any day of the week to see one, and I can show you a running list of varying sizes, urgencies and purposes. My pre-surgery to-do list included everything from the mundane to the social to the creative to the meditative: cleaning out my email inbox; making my way through the growing pile of papers on my clutter table; purging closets and garden sheds and basement shelves; making time to walk, eat, tea with new friends; making time to reconnect with old friends; finally finishing Sophie’s and Harrison’s stalled baby books; organizing my most recent photos; reading Prepare for Surgery, Heal Faster; listening (often) to the accompanying CD; carving out time to slow down and relax.

Just writing that to-do list makes me breathless, which is how I was the last couple of weeks, until a couple of days ago when my family (Josh, Sophie and Harrison, my parents), climbed into our minivan at 6 in the morning for the first leg of our journey toward the Grand Canyon. Image 26

Not long after I was diagnosed with breast cancer in October 2014 and told I would need surgery, I knew I wanted to take a trip beforehand. I wasn’t sure when or with whom it would happen, but getting away felt important. And important it has been, even more so than I first imagined. Because after weeks of anxiously trying to “fit everything in before surgery,” I am relaxed. I am happy. I am having (one of the things on my to-do list) quality, focused, fun time with my children and with my myself (not to mention my husband and my parents).

And not only am I relaxed and happy and enjoying my children. Yesterday I got to see the Grand Canyon for the first time.

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Yesterday I also listened to Belleruth Naparstek’s pre-surgery, relaxation CD (thank you Linda and Elanit), and as soon as I closed my eyes, I was surrounded by millions-year-old, red rock. Surrounded by open space and long-ago history. Surrounded by—immersed in—perspective and gratitude and calm.

I am but a speck on a speck on a speck on a speck. Somehow, sinking into that fact has always calmed me. The same way that sitting on this porch and looking out over the wide-open Arizona landscape, with its wide-open sky, calms me. If my life, my breast cancer, my anxiety, my to-do list is but a tiny speck, then why get weighed down by any of it? If I am so unimportant (what a liberating thought!), then what else is there to do than feel this warm breeze on my forearms and toes? What else is there to do but soak in my son’s voice from the other end of the porch and the crow’s call from across the trees? What else is there to do than sink into this moment, fully and completely? (Amazing how as soon as I do sink in, I also hear the wind in the tree in front of me, which sounds different from the wind in the grass to my left and different still from the wind in the tree on the other side of the fence. And then there are the birds: the constant chirp, chirp, chirp interspersed with the occasional, more high-pitched call in the distance and the even more occasional cacophony of birds meeting in the same tree with the wind.)

Harrison, knowing that neither his parents nor grandparents had been to the Grand Canyon before, kept saying yesterday, “This is a once in a lifetime experience! I might never see this again!”

And so is this moment, a once in a lifetime experience.

Easier for me to say and feel from this porch than when I’m sitting at home in front of a table over-flowing with bills and unopened mail. But the more I soak up each moment, the more I will carry this feeling with me—the same way I hope to carry those millions-year-old, red rocks with me. The more I soak up each moment, the easier it will be for me to feel the vast, liberating openness, no matter my next challenge; no matter what is next on my to-do list.

Joy

I want a break from writing about loss and grief and fear. I want to write about joy. I want to practice joy. Because I want to feel joy.

These days, I spend my days rushing to fit “everything” in before my surgery (which is on May 20th, two weeks from today). These days, when people ask how I’m doing, I say, “Eh.” These days, I am less in my day, (less in my body).

And so I want to ponder joy. Not in a I-wish-I-could, I-wish-I-had, maybe-some-day sort of pondering way. I want to think about what will bring me joy this day. I want to wake up each morning and have at the top of my to-do list:

JumpingJoy#1) Think about what will bring me joy today. (Jenny, what will bring you joy today?)

And:

#2) Do something—maybe do two or four somethings—that will bring me joy.

So what brings me joy?

  • Slowing down enough to spend 5, 15, 30 minutes of focused time with my children. Like this afternoon, when I helped Sophie turn a shoebox into a bed for her stuffies. It only fits one, and she has about 97 of them, so she explained that whichever one will go to school with her the next day gets to sleep in the bed. “Makes sense,” I shared. “Gotta have a good night sleep before school.” Then Harrison and I spent about 12 minutes working on a puzzle during which time he, not surprisingly, taught me plenty about how to tackle a puzzle. Joy followed by a little more joy.

What else brings me joy?

  • Reading my book in the middle of the day.
  • Reading to my children in the middle of the day. (I’ve never understood why that joy doesn’t translate to bedtime-reading. Unfortunately, bedtime-reading is typically the opposite of joy for me.)
  • I’m admitting it here: watching bad T.V. in the middle of the day brings me joy. It’s my ultimate guilty-pleasure—what I imagine playing hooky feels like, though I never did play hooky. Guilty, which is why I always close the curtains. If you walk by my house in the middle of an afternoon and the curtains are closed, you’ve busted me watching bad T.V.
  • For the record, if I’m watching bad T.V., I’m also doing something in front of the T.V. Sometimes it’s folding laundry or returning emails or opening mail, but none of that brings me joy. What does bring me joy, tremendous joy and calm and fulfillment, is doing a good craft project in front of bad T.V. A scrap book for a dear friend. Photo albums to pass along to my kids someday. I would gladly spend days bad-tv-crafting.
  • Sitting around a table with food and/or drink and good friends.
  • Sleeping in. Though that might be more relief than joy. Still, I’ll gladly take it.
  • Eating a delicious piece of fruit. If I’m paying attention.
  • Writing something that I feel good about.
  • Sometimes, when I can really dig in without interruption, cleaning out my closets and drawers and corners brings me joy, like it did this Sunday when I helped fill a dumpster full of crap and a minivan full of Goodwill donations.
  • Finishing a great run. Sometimes the run itself brings me joy, but only if it involves good conversation and minimal pain. Even then, I think I’m happiest when it’s over and I can savor the memory and the feeling of success without so much exertion.
  • Connecting—really connecting—with another human being.

fields flowersTomorrow, I have a too-busy day. I don’t like too-busy days. But I think I’ll make it my goal to slow down enough to collect some joy along the way.

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.