The End of Chemo: Reflections, Remembrances and Readying for the World

Yesterday was my last chemotherapy appointment. After 4 ½ months and 16 infusions, I am finished with the first phase of my breast cancer treatment. For the past week, I have been battling severe, free-floating anxiety, which I now think had as much to do with the anticipation of this new change in my life as it did with all of the life-details to which I was attributing the stress. As mentioned in my last post, reaching this momentous occasion has been bittersweet. (In a much earlier post, I write about the mixed feelings many people experience as and after they finish cancer treatment.) Bittersweet because it means saying good-bye to all of the caretakers I’ve gotten to know at the Cancer Center; good-bye to Maggie’s packages of delight; good-bye to my routine.

But last night I realized that there is something much bigger burning beneath the surface. The end of chemo brings with it yet another significant and in many ways unknown life change, much the same way my cancer diagnosis did. With any significant change, uncertainties abound: What now? And, What do I want now? And, How do I actually make happen what I want now?  The unknown is, in and of itself, often scary (even when it is also exciting).

But it’s more than facing the unknown.

When I was diagnosed with breast cancer, all of the unknowns swirled around inside of me as my life transformed in ways that sent me INWARDS. Into my house, into myself. I was too sick to work, to socialize, to go outdoors.

With the end of chemotherapy, all of the uncertainties are once again swirling, but this time, as life is sending me back OUT. OUT into the world. And despite the fact that there are many ways in which I have always loved going OUT—love socializing, love traveling, love collaborating, love making new connections—going out into the world has also always come with a degree of fear.

Almost every morning, when I bring my 6-year-old Sophie to school (or say good-bye before sending her off with someone else), she clings for one more hug, often her eyes well with tears, she braces herself to leave my side and venture out into the world on her own. Amazingly, she goes; never has she grabbed hold and begged and cried (for which I have the deepest awe and respect). (Thankfully, it only takes her a couple of minutes to feel settled and safe in her classroom.) I understand her lingering completely–which only deepens my respect and awe. As a young child, I also struggled with school mornings—and then as an adult, with work mornings. I have always awoken to those mornings with a sense of loneliness and a touch of fear in my gut. I have always had to brace myself to face the wide and scary world on my own.

I think I am bracing myself now.

As I brace myself, I know that I desperately want to hold onto what I’ve learned these last several months about who I am, who I want to be, how I want to live. And I know it is much harder (at least for me) to stay grounded and true to myself when I also need to navigate the wide world and all of life’s realities.

But perhaps this is the meaning of life. Perhaps we—perhaps I—am here to find my truth, and then find ways to live that truth, not in a bubble, but in the day-to-day, real-life, wide and scary world.

Already I am feeling so much more grounded than I did over the past week. Perhaps it’s the newfound clarity rising to the surface. Perhaps it’s simply getting past the anticipation of the end of chemo and to the actual end of chemo. Whatever the reason, I am relieved and grateful to be more comfortable in my body (that the intense anxiety has eased for now). I am also feeling more excitement than fear (in this moment, at least! who knows what the next moment or tomorrow will bring!) about whatever might come next.

Before I close the door on my chemotherapy, I want to look back and remember and share with you the many wonderful people who took me to, and took care of me, during my 16 infusions.

Jen (on the right), my regular chemo nurse, who, after years as a hospice nurse, knew well how IMG_0420to take care of people in the midst of major life challenges and changes. Over the last several months, I learned about her four children and her police officer husband and her love of reading.

And Joanne (to my left), longtime nurse who then turned massage therapist about 20 years ago, after caring for her 6-year daughter old when she was diagnosed with cancer. (Her daughter is now 28 and healthy as can be.) Most weeks, Joanne would massage my shoulders or my face or twice, my feet, while we slowly got to know about one another’s lives and hopes and fears.

IMG_0518Kayla, who always took my vitals with a smile and brought me a warm blanket and chatted with me about our weekends and our children and made me feel welcome and safe and seen.

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Annie (aka “Borgy”), whom I designated as my god-mother when I was nine (despite the fact that she is Jewish, and I have never been religious); and whom I’ve always referred to as “another mother” to me, since she has known and loved and cared for me since the day I was born. She traveled 2 hours from Hunter Mountain—twice—to take me to chemo (and to take care of me during the aftermath). (Unfortunately, I don’t have any pictures of us during this time, but here’s a picture of her:)

Jenae, soul-friend-extraordinaire, who traveled three hours from Brooklyn to take IMG_3116care of me in the days before my parents arrived. During that time, she took me for my post-chemo fluids and steroids, which was identical to a chemo visit aside from what they were pumping into my veins, so I’m including her here (with a pre-chemo photo of us; she’s on the right).

IMG_0261My parents, Sula (aka “Amma”) and Harvey (aka “Zayde”) who took me to the bulk of my infusions, where we usually talked, sometimes did a bit of reading, very occasionally watched TV when I was too zonked to do anything else, and then toward the end, discovered the joys of travel Scrabble at chemo infusions!

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Maggie, my soul-mate, sister-friend for the last twenty-plus years (and the giver of all those chemo gifts), was usually teaching 2nd grade when I was at chemo, but thankfully had the chance to take me when she was on school break… and then Josh, who was doing a rotation next door, surprised us on his lunch break!

And my other (in addition to Maggie) nearest and dearest Northampton friends (who did so much more these past several months than take me to chemo):

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Hannah Ray! (left) and Keegan (right)

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Angela and Clover (left) and Jen and Nunia (right)

And I have to tuck in Jain here. Even though she never officially tookImage 3me to chemo, she did pop in for visits before and after and in between her midwifery shifts next door. (Again, no chemo picture, but here we are at an American Hustle dress-up party—Jain is the curly red head on the right of me in a wig.)

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.