My First Support Group: What Some of Us with Breast Cancer Really Feel

I went to my first breast cancer support group last night. I’ve never been one for organized group activities—guided tours, support groups, church. Even committing to scheduled exercise classes proves challenging for me. So it’s taken almost four months to get myself to this support group that meets at the (amazing) Cancer Connection just a few blocks from my house.

I am so glad I finally went. I spent 90 minutes hearing my own feelings (which have often felt odd and wrong) reflected back to me in the words of seven other women with—or just on the other side of—breast cancer.

As emotionally “good” as I felt in November and December, there was also a lingering guilt. A what is wrong with me that I have breast cancer and I’m happy? kind of guilt. And then, as I started to feel better physically, the “what’s wrong with me voice” intensified. What’s wrong with me that my emotional state is plummeting now that I’m feeling better physically? What’s wrong with me that I’m mourning the loss of those earlier months when I was so debilitated? What’s wrong with me that I’m in no rush for this whole experience to be over?

Last night, one woman after the next expressed what I have been feeling. To my right, a woman about my age talked about the mixed emotions she feels as she faces her final chemo infusion and the end of her cancer treatment next week. Now what? She wondered. To her left, another young woman toward the end of radiation and cancer treatment echoed similar sentiments. She talked about how all these appointments have become her routine, and that in some strange way, she’s going to miss them. She’s going to miss seeing the same nurses every week. Miss the attention and the care she receives from the people in her life.

I talked about how I don’t want my life to go back to normal, back to the way it was. That I want to be changed by this experience. That I feel such a sense of loss when I feel the old slipping back in; such mourning when I think about all of this being over and forgotten.

Across from me, a woman who finished treatment in the last several months said her friends want and expect her to be fine now, and she feels like she’s just starting to grieve. She said that listening to the rest of us talk, she realizes that the reason she’s struggling emotionally is because everything and everyone around her has gone back to normal, but that is the opposite of what she wants.

The what is wrong with me? voice slipped right away in that room.

A friend of mine who spent last year in treatment for breast cancer told me some months ago about a photograph hanging on her fridge. It’s of her and her two daughters when she was in the middle of chemo. “I’ll never take that picture down,” she said. “I never want to forget that time.”

I’ve clung to that story in the last several weeks, as I’ve started to feel better physically and less so emotionally. And when my friend and I walked last week, I asked more about it, hoping that my desire to hold tight to this cancer experience was something she might understand. (After all, it’s not what one is “supposed” to feel. We’re supposed to push through to the other side, as quickly as possible. Surrender to a crappy year, then move on, grateful it’s over.)

My friend very much understands—very much knows—the desire to hold on. And as I’ve just discovered, so do many other women with breast cancer. So it turns out that my feelings aren’t as strange as I thought. (Suleika Jaquad, who writes about her leukemia in an award-winning New York Times’ column, is someone else who complicates the concept of “getting back to normal” post cancer.)

I suppose this is a reason for support groups. Maybe I’ll sign up for a guided tour somewhere and even start going to church. 🙂

Bumpy Landing

It’s been awhile since I’ve written. My silence is a reflection of how I’ve been feeling emotionally—like I am through the initial whirlwind of a cancer diagnosis and beginning of treatment, and I have since landed in a “now-what?-all-the-hoopla-has-died-down-and-I-have-nothing-new-to-do-or-report” kind of quiet. For so many weeks there, I was on this strange high. Odd considering the circumstances, I know. So odd that I hesitate to admit it in front of who-knows-who is reading this.

But this is what transpired for me: I was diagnosed with cancer on a Wednesday. I (barely) moved around in a drug-like haze for the next two days. Then I woke up IMG_4220on a Saturday, bubbly and excited to make Harrison’s 9th birthday party that afternoon all he dreamed. After another day or two of continued bubbly, I started to think I was in some deep denial and that any day now, I would snap and feel the darkness one is “supposed” to be feel with a cancer diagnosis. But the darkness never came. Instead, friends and family came (in the form of cards, calls, meals, visits, texts, packages) with a stunning vengeance. A great night out with Josh came. The sun came. A beautiful rain came. The holidays (which I love) came. Special time with my kids came. In other words, everything before me felt like a gift. I was so happy. So blissfully grateful for my life.

I still am grateful! But I’m not riding the same high I was through the holidays. Though it makes sense to me now, I never expected my emotional state to decline as my physical state improved. But since I’ve been responding to the chemo with more ease and therefore able to do more, my mind and my ansiness have been busier, searching for things to lock onto. charlie's anxietiesI’m more troubled again by a cluttered home. I’m anxious about my future: What I will do in the short term as I finish treatment, but now with more energy and comfort than I had before? What will do in the future beyond my cancer treatment now that I’m letting myself dream up a different kind of work life?

I’m also starting to feel the weight of constant company. Having my parents here has, up until now, been utterly blissful. What a dreamy, happy, perfectly fulfilling and present holiday we had, just being together, in the moment, letting the days unfold. I never wanted it to end. Felt my familiar “I want this to last forever” grasping early on in the kids’ school break. But by this past weekend, it felt time for the kids to go back to school. And around the same time, I started feeling us grownups bumping up against each other a little more. My parents have been living with us for a month now, and I am craving space.

Everything felt so blissfully easy (however ironic it might have been) when I was feeling so crappy, and all I was doing was attending to my health from moment to moment to moment. So little anxiety. So little thinking about the future. So little thinking about the endless possibilities in life. Now, the more capable I feel, the more complicated things feel, and old familiar patterns of anxiety are seeping back in.

The Best Day Ever (Cancer or No Cancer)

Just wrapping up the best day ever. This second chemo cycle has been EONS better than the first. I was still pretty laid up the first week with nausea and fatigue, didn’t leave the couch much, but even so, it was less all-consuming-debilitating than the first go around—evidenced, for example, by the fact that I could tolerate TV watching and book reading (last time both only made my nausea worse), and by the fact that I actually started to get stir crazy a week in (last time I felt too putrid to feel anything other than putrid until almost two weeks in).

Today I woke up and went for a VERY SLOW but nonetheless RUN with Josh in the first sun we’ve had here for days. Then I ate a full bagel-with-the-works brunch followed by some good ol’ Monopoly (no surprise, Harrison negotiated us out of our properties and took us for our money, too). IMG_0283After the appropriate amount of said lounging around the house, we ventured out, and the kids helped me pick out a very fun, very purple wig; and then Harrison and I chopped IMG_0063down a Christmas tree (with Sophie, Amma and Zayde—aka my mom and dad—in tow). The only way the day would have been more perfect would have been if Josh had been with us instead of studying away. (Josh graduates in May 2015 from his very time- brain-energy-consuming physician assistant graduate program.)

But wait, there’s more. Then we rescued Josh from his books for a tree-decorating, cheese-and-cracker-eating, dance party. Hard to say whether my highlight was twirling around the living room with Harrison and Sophie (and you, dad!); or lIMG_0096aughing with them as we tried on pink and green wigs; or running with them through the fields of Christmas trees; or sitting around the dinner table just a bit ago with my parents and my smiling, happy children, and my love Josh, talking about what a great day itwas and knowing there are more to come, whether it be tomorrow or next month or next year.

(The bad news is that I have terrible mouth sores, a new symptom that developed a few days ago. The good news is that chemo #3 isn’t until Thursday, so mouth sores aside, I am looking forward to a few more days of feeling more physically able.)

Here Is My Village. Here Is My Gratitude.

For the last hour, since Josh left at 5:30 a.m., I’ve been lying in bed trying to compose a thank you to my incredible, life-supporting, soul-nurturing community of friends and family. Such a feat might prove impossible because the list is so long and varied and awe-inspiring that my fear of inadvertently leaving just one person off of the list might out-weigh my deep desire to mention every single individual by name. Let’s see what happens…

The “composing in my head” started because I was thinking about this afternoon, post-chemo, which got me thinking about my Dear Maggie, who is coming straight IMG_0507from work to spend the afternoon and evening with me, until Josh comes home from work, whenever that happens to be. Maggie who has filled every nook and gap on our “needs list” like only a sister (or mother or spouse—and only a particularly wonderful sister or mother or spouse at that) would do. She calls me no fewer than three times a day. Swoops up my kids at a moment’s notice; drops off prescriptions; shuttles me about; creates gifts to be opened during chemo (the latest a bag with enough individually wrapped goodies for me to open one, every half hour over the course of treatment); and does no doubt endless hours of behind-the-scenes work, from managing the site to coordinating support via phone and email to updating out of town family to navigating the dozens and dozens of emails she finds herself cc-ed on because of her integral role in my family and care. I wrote of godsends recently and have found no better word as of yet to describe people like Maggie.

People like many of you who are reading my posts. Thank you. Thank you to:

Annie, for traveling here from the Catskills, twice, to take care of my family and me in the days following chemo (or in the case of this week, to spend some quality leisure time with me in the days following not-chemo!).

Joe, Andrea and John, for, between the three of you, driving more than ten hours to transport Annie (who has chronic back pain and can’t drive long distances) between Hunter Mountain and our house.

Nunia, for taking me to chemo today.

Jen Bernache, for taking me to almost-chemo on Monday.

Keegan, for dropping everything at a moment’s notice, more than once, and giving up an hour here, an afternoon there to take me to last minute appointments.

Barry for driving me to yet more appointments, dropping off scripts and generally being on call for just about anything, anytime.

IMG_0509Jenae, for coming up from Brooklyn tonight to take care of me through the first several days of this next treatment. For checking in on me constantly, constantly. For being, even from afar, one of the first go-to people on my short list.

Clover, for “saving my life” :)) by 1) taking my kids for their flu shots; 2) arguing with the staff until they agreed to let you, a non-family member, give your consent for said shots; and 3) stopping the nurse just in time from giving the mist—and thereby protecting my chemo-suppressed immune system from live viruses!

Clover, Jen Bernache, Cara, Renee, Emily and Phil, Michele, Maggie and Barry, Andrea and John, Laura and Josh, Nuni and Silver, Molly and Mosie, Hannah and Greg, Eric: for inviting my kids to be carefree, happy kids in your care, entertaining them for hours on end (and letting me be miserable in peace).

Jeff and Tala, Sarah Buttenweiser, Shawn, for grocery shopping for my family.

Cathy, Tricia and Tonja, Tala and Jeff, Clover, Janet and Mark, Kerry, Jen Reed, Mary Bates, Noel, Jain, Elanit, for dropping off delicious, nutritious food and seriously cutting down on the dinner-time stress.

Jain, for being so on it from the start, doing what had to be done to get me seen, and hence treated, asap. For all the visits and check-ins and the super cozy hand-knitted hat, too.

Karen, for sharing your personal experience and wisdom and books and head wraps and walking company.

Ms. Jenny Jen and Mary Ellen Reed, Michele, Keegan for taking my kids to school.

Tricia, for picking up my folks in Springfield and delivering them on my doorstep.

Aimee, for leaving your own family and driving up from New Jersey this weekend to take care of all of us until my folks arrive on Tuesday.

Julie and Debbie, for all your help navigating doctors and second opinions and treatment recommendations.

Terry, for taking such good care of my mom while she’s in Northampton, so she can continue to take such great care of me.

Marsha, for taking such good care of me.

Cousin Brian, for offering to leave your own family two hours away to be with my children after school.

Nancy, for signing up to pick up my kids, whom you don’t even know, to love and feed and distract them at your house.

Shawn, Angela, Elanit, Amanda and Eliza, Kai, Jeff, Mike, Cousin Stephanie, Cousin Caroline, Aimee, Joe, Ginny, Cathy and Josh, Amy, mom’s friend Michelle, Kathleen, Cory, Lucy, Julia, Katherine, Betsy, Bri Guy and Rachel, Norma, Mark and Nancy, Aunt Rie, Uncle Stirlin and Aunt Beth, Aunt Christine, Aunt Jackie, Aunt Marjorie, Davood, Peter, Jodi, Mica, Ellen Obradovic, Jo, Ann, Louise, Dina, Connie, Taije, Jason, Jannell, Jared, Rosie, Megan for sending one or more of the following: gifts, hand-written letters, repeated phone calls, inspiring emails, such love from near and far.

Margot, Mary, Jenae, for getting in your car and driving up from Brooklyn as soon as I gave the okay. And for secretly pasting photos and notes to be revealed over time when I open a cabinet door, the toilet seat (ha!), a closet. For being on the ready to walk me through questions for the docs; debrief information; talk me through hard decisions. And for making me laugh, so much, all the time. Such good medicine. Also, for the box from Amazon filled with YA novels and the stack of trashy magazines to help me pass the time.

Ellen, Kim, Gwen and Sarah for taking extra special care of my babies at Jackson Street, making them feel safe and loved and heard and thereby making me feel that much more at ease about my children’s well-being during this complicated time.

IMG_0265Mama and Poppy, for doing everything I would want to do for Harrison and Sophie if they ever found themselves in a similar situation. For making it possible for me to take a leave from work. For putting your West Coast lives in order so you can have an East Coast life for an indefinite period of time. Really, there are no words, but I think you can feel my heart and all its gratitude for both of you.

Josh, for doing everything, everything, every thing you could possibly do to support me. For singing “You are so beautiful” while you shaved my head. For IMG_0501telling me how strong I am and how proud you are of me. For washing and cooking and taking over the dreaded bedtime hour and changing the sheets and rubbing my neck and packing lunches and coming to all of my important appointments and refusing to sleep in the other room when you have to get up in four hours to be VERY ON and my restless discomfort is keeping you from sleep, but you still won’t switch beds because you don’t want to leave me. Thank you for all of that, my love, plus the 374 other wonderful things you say and do every week for me and the kids and our family.

I will no doubt wake up in a cold sweat in the middle of the night when I remember ten more people I wished I had thanked. Please do not take it personally, especially since, at this point, my brain is fully wonky from the drugs.

A Surprising Combination: Chemotherapy and Gratitude

Chemo is wrecking me. Shouldn’t be surprising considering my body tends to be sensitive to what I put in it. But with all the docs insisting that chemo isn’t what it used to be, I wasn’t expecting it to be this hard. I’ve learned in the last week that women who get sick during pregnancy (check) tend to get more nauseated with chemo; as do premenopausal women (another check).

I’m learning patterns, though who knows yet that they are, in fact, patterns versus simply what each day brings for now. But it seems that, now that the nausea is subsiding, I feel best in the morning, which is a wonderful relief. On Saturday, the first day that I woke up to this feeling better, I clearly overdid it with the excitement of it all. Family breakfast at the Green Bean, an hour of holiday shopping with Josh while Annie watched the kids, some tidying around the house. By midday I was back in bed where I spent most of the next two days getting more acquainted with my nausea.

Though I haven’t embarked on any other grand outings since Saturday (unless you count the Baystate Cancer Center on Tuesday or the twelve minute walk on the bike path on Monday), the last couple of mornings have been rather lovely; and by midday—after the exertion, perhaps, of a bath; an email, maybe two; fifteen minutes of reading; half an hour of focused time with my children, all of this interspersed with much lying around on the couch or in bed—I am fairly down for the count again.

I’ve had to ask for more help than I’m comfortable with. Though I’ve also had to ask for far less than what continues to be offered, day after day after day.

Because of the intensity of my reaction, it became clear that we really need someone here round the clock by the time I have my next treatment on Monday. Either that or Josh takes a leave from school, which I am hoping he won’t have to do. (Though I have no idea how he carries on with such compassion and focus and grace, leaving at 6 a.m. for what would be one of the most intense rotations on the best of days, thinking, working, caring for people all day long, then coming home to care for me and the kids with yet more compassion and focus and grace.)

So Annie, my godsend of a godmother (I have so many godsends these days), is people holding handscoming back from Hunter Mountain Sunday through Thursday before she flies back to San Francisco for the winter. Jenae, one of my many godsends of a friend, comes up from Brooklyn Thursday through Sunday. My sister-in-law Aimee comes from New Jersey Sunday through Tuesday. And then both of my parents arrive, Tuesday afternoon, for an indefinite amount of time. Phew to all of that. Phew to my amazing village.

Somehow, my spirits are intact, though I can’t say I understand it. Except that what they say about gratitude must be true. It brightens everything. Today I got to play cribbage with Harrison before he went off to be a very happy kid at his friend’s house; and later, when Sophie came home a very happy kid from her playdate, I got to sit with her in my lap in our comfy blue chair and laugh for a good twenty minutes about whatever one laughs about with a six year old. It was a good day.

Today was made possible by three different godsend families. Yesterday, another whole set of three. The day before that…. People just keep coming and offering and taking such care. My spirits are buoyed by gratitude.

I turned forty with breast cancer

I turned forty today, Sunday, November 23, 2015, one month after being diagnosed with breast cancer and five days after starting what is showing itself to be debilitating chemotherapy. So far, it’s wrecking me with nausea, mostly, but also fatigue, and in the hours just before I turned forty, diarrhea throughout the night.

Finally, finally, I got things under control later this morning. And even though lying in bed with breast cancer and fairly broken by chemo is a sad way to spend my fortieth, I felt such relief about feeling some relief, that I found myself also feeling grateful.

Maggie (the closest thing I have to a sister, as well as my Harrison’s godmother, and my soul mate and best friend and and and….) and Barry (her husband and Harrison’s godfather and a particularly stellar human being) came over with their boys and with so many flowers and with bagels that, miracle of miracles, I actually found delicious. Josh and the kids showered me with tender cards and precious gifts and the kind of love that I’m certain not many people on the planet ever experience, at least not in such purity and abundance.

Back in bed after the bagels, laid out on my fortieth because of breast cancer and chemo, I felt a strength that I don’t fully know yet. It was clear as could be that this is changing me, will change me, will help me become more of whomever it is I want to be in this life. There is meaning in here somewhere. There is a life cakethat I’ve always wanted to live that I will uncover on this path. THAT is what I am taking for my fortieth birthday.