And so it continues…

I feel like this:

head against wall

And this:

rage

And this:

crying baby

Last week, I was finally getting back on my feet: got the okay to exercise again and ran for the first time in a month; hired a sitter and danced a night away; embarked on my first big work trip in ages. But instead of truly getting back on my feet, I got another seroma. I’m having surgery, again, this Wednesday.

I was already feeling a swirl of emotion before my breast started swelling and throbbing again:

I was feeling daunted by the long road ahead of me toward a full recovery—feeling my lack of strength and stamina, my inability to exercise like I used to, to travel without ensuing exhaustion.

My surgeon says that this time, he doesn’t want me to exercise for at least 4-6 weeks. The road is feeling even longer, even more daunting. People assure me that I’ll get my strength back, but I’m not so confident. I am no longer the 36 year-old who ran 20-25 miles a week, often in 8-10 mile stretches, while working and parenting and socializing and dropping down for 20 push-ups when I felt like it. I’m now the 40 year-old who has been beaten down by a year of toxic treatment and two going on three surgeries and who can barely get through 3 miles at a snail’s pace; and when I do get through 3 miles at a snail’s pace, I then need to lie down on the couch to catch my breath and make sure my legs don’t buckle beneath me.

Even before this most recent seroma, I was feeling like people were done with my cancer, and I don’t blame them. It’s been a year, and trust me, I’m done, too. Except I’m not done.

I’m not done because I need to have yet another surgery and then who knows how many more after that, because who knows why I keep getting seromas and how to make them stop. But even before this latest medical frustration, I wasn’t “done” because as good as I am at feeling grateful for all the wonderful aspects of my life, I am also just on the other side of thinking I was going to die, young. And I am all too aware that I still could. That 30% of women with an early stage breast cancer diagnosis develop metastatic breast cancer. That my young age only increases my odds: More years during which my cancer could come back. For better, but also for worse, life will never be the same for me (or so I imagine, and so I hear from other women who have walked a similar road). I imagine I will forever feel the shadow lurking in the corner.

What, then, does “done” really mean? Will I ever be done with breast cancer?

Harrison expressed similar concerns when Josh and I told the kids this morning about this next surgery. It doesn’t help that Harrison turns ten next week and my breast cancer is, for the second year in a row, a dark shadow over his birthday festivities. But he said that even though he was disappointed about his birthday, that wasn’t the main upset.

IMG_2251“It just seems like it’s never going to be done,” he said again and again. “I want it to be over, and it feels like it’s never going to end.”

What is there to say to that other than, “I know” and “I feel that way, too” and “I’m so sorry you have to deal with this”? Of course I said all the positives I could, as well. But I am careful not to tell my children that I am going to be fine and that everything is going to be okay, because of course there is no way to know what will be.

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“What do your breasts look like now, Mama?”

Snuggling with my 7-year-old daughter after reading her a bedtime story, she asks, “Mama, what does your breast look like?”

Suddenly I remember: I thought I saw her watching me on the beach when, back turned, I changed out of my wet suit. “Are you asking because you saw me without my shirt today?”

Nod.

“You can look if you want.”

She lifts the top of my shirt enough to peer at what’s beneath it.

She wants to know how they made my new breast.

I hesitate long enough to gather my response. This is why, when neither of my children asked questions before my surgery, I didn’t share any details about what was going to happen–because how do I explain a mastectomy to a 7 and 9 year old without it sounding terrifying? Of course I don’t want to say anything about cutting off a breast. Scooping out the insides doesn’t sound much better, but I can’t think of how else to answer Sophie’s question. “Well,” I manage. “They took out the stuff inside my skin and then put something else in there to make it look like a breast.”

“Oh, I get it. This one without a nipple is up and a little hard,” she explains, gently patting my new, left breast, “and this one is mushy and down.”

I smile at her language and her matter-of-factness. Smile because she’s described my breasts perfectly and without a trace of self-consciousness, the way only a child would do; and because she seems so okay about it all, no big deal. Relief. I’ve been anxious about this moment–about my kids seeing me post-surgery.

But I am also flooded by the old guilt and doubt that plagued me all those months during chemo when I was struggling to decide about reconstruction. Have I failed my daughter by deciding in the end to go through with it? Taught her that a woman isn’t a woman without breasts? I remind myself of all the other ways I’ve failed her, then–by wearing make-up and studying myself in mirrors and buying clothes I don’t need–and somehow that comforts me; rather than feeling badly about the make-up and mirrors, I remember that the fate of the whole world and of women’s rights and of my daughter’s self-confidence and of my son’s respect for women and girls does not rest on whether or not I chose to reconstruct my breast.

Still, I tell Sophie that I had to decide whether or not I wanted a new breast and that for a long time I thought no, but then I changed my mind. I want her to know it wasn’t a given, getting a new breast. “Lots of women choose not to,” I explain.

“What do they look like?” she wants to know. Such good questions.

“Their chests are flat, maybe even a little concave, which means it goes in like a dent where the breasts used to be.”

She’s on to the next question: “How come you changed your mind?”

I’m thinking about the fate of the whole world again, and I want to choose my words honestly but carefully. “Well, I thought I might feel more comfortable with two breasts, and after everything I went through, I wanted to feel comfortable in the end.” The truth is, I’m not comfortable now, with two very different breasts, but I don’t tell here that. I do, however, tell her that at some point, after I’m all healed from radiation, I might make them look more even. Do I tell her because I’m preparing her, while the opportunity has presented itself, for more upcoming changes with my body; or because I’m embarrassed by my body, even with my 7-year-old daughter, and want to assure her that I won’t always look like this?

Again she wants to know how–how will they make my breasts look more even?

“They’ll put something small inside this breast,” I say, resting my hand on the healthy one.
image

I try to answer each of Sophie’s questions with enough detail to satisfy her curiosity but not too much detail for her 7-year-old self to digest. I am grateful for the conversation–grateful that she feels comfortable enough to ask these questions; grateful that she seems utterly okay with the answers and with my new body; grateful for the quiet openness between my daughter and me.

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.)

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.