What to Expect Post Treatment

Oh, the things I’ve learned as a breast cancer patient.

I went to my first support group in February 2015, about five months after my diagnosis and four months into my six-month chemo regimen. It was the first time I heard women talking about how hard the end of treatment can be. Who would have thought that diagnosis and debilitating chemo and terrifying surgery would NOT be the hardest parts for so many women? Not me. Not until that first support group. And not until I experienced the struggle firsthand.

A few weeks ago, I picked up After Breast Cancer: A Common-Sense Guide to Life After Treatment by Hester Hill Schnipper. Though still technically in treatment (now with just one week of radiation to go!), I felt better physically, but my emotional life was twisting me in knots. It felt time to read the book that had been recommended to so many women before me in support group.

My first night with After Breast Cancer, my internal voice screamed, “I’m not crazy! HA! I’M NOT CRAZY!” (I’ve debated that often in the weeks that have followed, especially as Tamoxifen has turned me into a swinging pendulum of “I’m so anxious I’m going to explode” to “Hey, life is great!” to “RAAAAAAGE” to “I’ve never cried so much in my life and still, I can’t stop crying.” Good times—for all of us in my household.)

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Here are a few of the things I’ve learned from Schnipper—and from firsthand experience as a breast cancer patient:

  • The majority of women (that surprised me) have the hardest time after treatment.
  • As women with breast cancer slowly return to our “normal lives,” intense overwhelm is so common, it’s to be expected. (Can you hear my, “I’m not crazy!” voice?)
  • The rule of thumb is that it takes women at least the length of time to regain our physical well-being as was the duration of our treatment. Schnipper says to count the months between the day of diagnosis and the last day of chemo, post-surgery drugs, radiation—whatever the end of treatment might be—and expect at least that long to feel our old, physical selves. (I was diagnosed on October 22, 2014 (one day after my son turned 9) and finish treatment next Thursday, August 6 (one day before my 11th wedding anniversary), so by next May I might be “back to normal?”)
  • Schnipper says it takes even longer to recover emotionally.
  • She also says friends and family are following a different calendar, one that expects that, “Yay, you’re all better now!” Support tends to fade. Expectations tend to return more quickly than we’re ready to meet them. This, of course, can intensify feelings of overwhelm, isolation and, well, crazy.
  • Some studies show that patients who have undergone chemotherapy score significantly lower on cognitive functions even ten years post treatment. (Sweet. So my frequent inability to retrieve words and form a coherent sentence just might stick around for a-long-while longer.)
  • “What sexuality?” (Enough said?)

In an earlier post, I wrote about the fact that experience brings knowledge. I never expected to amass so much knowledge about breast cancer, chemotherapy, radiation, mastectomies, breast-reconstruction.

I never expected to feel my mortality so acutely at such a young age.

But neither did I ever expect to feel as loved as I’ve felt over the past year. I never expected to test the power of gratitude as I have and to learn firsthand that it does in fact dampen fear and loss. I never expected to feel such a deep, unending strength, a strength that, no matter what happens, will get me through to the other side (of life, of this post-treatment struggle, of whatever “other sides” I might face), feeling whole.

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.

Roller Coaster

These days, I feel like my friend’s almost-teenage daughter who says, “I can’t stop crying, and I don’t know why!” I feel like myself at fifteen when I used to slam doors and stomp on stairs and sometimes even scream, “I hate you!” at my mother. I feel like a roller coaster, up and down, round and round; like 100 marbles spilling and spinning on a hard floor; like the site of an alien invasion or a hostile takeover or a tornado.

One day, I’m my happy self. The next, so full of rage I can’t stand to be in my own skin. One hour, sitting in sadness. The next, laughing.

I assume this is the Tamoxifen taking my body by storm. (Tamoxifen blocks the hormones that fed my estrogen and progesterone positive cancer. I’ll be taking it for the next five to ten years–but hopefully adjusting to it much sooner than that!) People have reminded me that I have other good reason to be angry and sad and anxious. (Breast cancer; and months and months of breast cancer treatment.) While I do not doubt that there are many factors at play, whatever is happening with my emotional body somehow feels physical, chemical.

The good news is, I’m not depressed. I feel further and further away from that deep, dark, hole I was in a couple of weeks ago. Sure, I feel a little crazy! Sure, I feel totally at the mercy of the wind. (What new emotion is going to blow in now?) But maybe because I’m not 15 anymore, I’m better able to enjoy the good and let the harder stuff pass on through me. At least, that’s what I’m trying to do.

Several weeks ago, in response to one of my posts, my mom sent me this card.

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In this moment, when the wind is calm, I feel like, “Okay, so I’m a little emotionally unstable these days, I can roll with that.” But when the wind picks a more challenging pace or direction, it does get harder to not kick and scream and fight back.

I’ve been working extra hard (with very mixed results) on letting the wind carry me—working hard not just because of whatever is happening emotionally, but because this is a week of huge transition, and for me, transitions often lead to grasping. To me wanting things to slow down or stop or be a certain way. And so I keep whispering to myself, “Trust. Let go. Trust. Let go.”

Transition #1: The end of school for my kids, which is bittersweet: As always, I welcome summer, but it feels especially hard to let go of 1st and 3rd grades (and of Sophie’s and Harrison’s amazing teachers). As I anxiously anticipated the last day of school (yesterday), I realized that part of my grasping is because I feel I’ve missed out on so much of the school year. And now “poof,” it’s over, my kids are a year older, and we’ll never get this time back.

Transition #2: My parents fly back to California tomorrow. What do I say about my amazing parents? They both put their own lives on hold so Josh and I could move forward with ours. When I was first diagnosed with breast cancer in October, Josh was in his second and final year of an extremely intensive graduate program to become a Physician Assistant. We assumed he’d defer for a year, but instead, my parents moved in with us to take care of the kids and of me through those awful months of chemotherapy and then again for those awful weeks of recovering fromImage 2 surgery. (And today we all screamed with joy because Josh passed his Boards and is now a certified PA! I am in awe of my husband and more in love than ever—what he accomplished amidst my breast cancer, and all of it while also being here for me every step of the way.)

I am also down on my knees grateful to my parents (who are long divorced, by the way, but neither of them could stay away, and so they—we—made it work, beautifully, all of us under the same roof for two months in the winter and another two months this spring). My parents who have been parents to my own children these past months, doing everything that needed to be done for a 6 and a 9 year old. My parents who have helped parent me back to health, doing everything that needed to be done for a 40 year old women with two young children and breast cancer. Thank you, Mama and Poppy.

Transition #3 has been less of a transition and more a time of uncertainty, as I met with various doctors to figure out when and where and for how long I would be doing radiation—and feeling like my life was once again on hold until I figured it all out. Yesterday I got the news: I can do radiation at my local hospital. I start on Monday and will go every weekday for 28 days.

My goal now is to let the wind carry me there and back and wherever else it wants me to go. My goal is to minimize the grasping, the door slamming, the roller coaster rides—but also to try and go easy on myself, knowing it ain’t always easy to keep steady in a storm.

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.

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.

Middle-of-The-Night Me

I don’t sleep like I used to. It’s not my typical insomnia of hours to fall asleep (though that happens, too). It’s restless night after restless night, many of them with hours of being awake while the rest of the country sleeps. It’s night after night of facing those middle-of-the-night thoughts. I hate those middle-of-the-night thoughts. I know not to take them too seriously. Know that everything feels darker in middle-of-the-night darkness. And yet, dark they (the thoughts) continue to be. Dark and heavy and bleak and stressful and sad.

They are not the inspiring, “What will I do with my one wild and precious life?” thoughts. They are the daunting and hopeless, “What will I do with my one wild and precious life?” thoughts. (On a brighter side, I laughed out loud this morning as I read what this writer had to say about her insomniac thinking.)

Earlier this week, I spent the night in a hotel room with 3 of my dear friends while 8 of our Imagechildren slept in hotel beds next door. I went to bed joyful about our April break getaway—emotionally filled up by watching our kids thrill over the adventure; filled up by talking for hours on hotel beds with girlfriends. In the morning, I got out of bed joyful about the day ahead—more hours of thrilling adventure; more time with girlfriends. So why, with joy on each end, does the middle-of-the-night still bring such suffering? Why, on this particular night, did I spend hours listening to the rain outside and the heavy breathing inside and the incessant voice in my head bringing up one dark thought after the next? Some detail about work: how did I not realize until now what I should have done but did not do? A changed friendship: would we ever get back to what seems lost? My upcoming surgery… and panic panic panic about everything having to do with that.

I spent this middle of the night thinking about this article and this blog post about the medical and emotional travails of reconstruction. About what feels like the looming loss of my body and of my comfort (again, physical; emotional). About what feels like a looming turning point that will forever divide my life into “before surgery” and “after surgery.”

“Before cancer” and “after cancer” carry a very different kind of significance, by the way. I was telling someone recently that though I would never have chosen breast cancer, neither would I wish it away at this point. There has been so much learning and growing and opening that I wouldn’t want to miss out on.

I do, however, wish this surgery weren’t happening. Will I feel differently somewhere on the other side? Will there be new learning and growing and opening that I am happy to receive in exchange for my breast?

I had expected the sleep to get easier on the other side of chemo. Had hoped that restful nights would seep back in just as the fatigue seeped out. (And the fatigue has seeped out! Two weeks ago, I never would have managed that 31-hour wonderful whirlwind getaway with 3 girlfriends and 8 children!) But last week, my oncologist said that no, my sleep issues are not because of the chemo—not the kind of direct result, anyway, that will improve now that the drugs are leaving my system. Rather, my sleep issues are a result of my chemo-induced menopause, and hence they are symptoms that just may stick around. (For the rest of my life? I am becoming my mother in ways I would rather not become my mother.)

Back from my 31 hours April break getaway, I did not wake up in a hotel room with friends, and perhaps that is why I woke up feeling sad. Because there was no immediate distraction to shake off the middle of the night. Though I did sleep more, I also dreamed of men with guns taking over my village. I dreamed what I used to dream again and again as a child but haven’t dreamed for years—of trying (desperately trying, such panic and fear) to find a safe corner to hide. Of never finding a safe corner to hide.

Am I hiding from the middle of the night? From my upcoming surgery? From some corner of myself? Am I hiding because these days, I struggle to answer that question: “What will I do with my one wild and precious [work] life?” When I find a way to live my passion, will I also find my safety—and maybe even a restful night of sleep?