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.)

keep calm not over

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.

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.

IMG_0863

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.