What I’ve Learned About Radiation

When Harrison was just 10 months old and experiencing his first summer at the DSC02297beach, I could almost see his brain growing with every new experience, every new vision and sensation. He’d point to the crabs scurrying along the shore, and I’d point back, saying, “Crab.” We’d climb on a boat, and I’d say, “This boat is going to take us on the water.” He’d sit in the sand and watch the gulls diving for food; or throw rocks from the shore and watch them make wrinkles in the water, and I would think about the synapses in his brain making connections, vocabulary, knowledge.

That summer, I thought often of the second graders I used to teach in downtown Manhattan, most of them from Chinese immigrant or Latino welfare families, many of whom had never left the several block radius of the neighborhood. They lived and shopped and schooled and played on the same concrete streets of NYC that were but a fraction of my own experience with the world. At less than one year old, my own child was seeing more of the world than many of them ever would, and I knew that as a result, Harrison’s brain and their brains would grow in very different ways. First as a teacher, then as a parent, I saw how much hands-on experience brings knowledge.

This is what I thought about during my first days on the radiation table (which IImagelie on without the red hospital gown in the picture, but bearing my soul on the internet is one thing; baring my naked chest quite another). Lying on the metal slab, my arms reaching behind my head into the pre-planned mold I now climb into every Monday through Friday, my head turned toward the right, chin slightly up, staring at the ceiling made of those old-school white squares with dozens of grey holes splattered throughout that remind me of depressing office buildings, or in this case, a hospital basement—I would think about Harrison’s first summer at the beach and how much his brain grew: crabfish, seaweed, lifejacket, tides.

Experience brings knowledge, and I would scroll through my expanding information-base. “What new radiation fun-facts have a I learned so far?” I would ask myself (not really thinking any of them were fun, but I’m trying to stay positive, and a little lightness helps).

I’ve learned that radiation therapists carry a ruler, so that every day during set-up, they can measure the distance between the beams and the body parts, making sure everything is aligned correctly.

I’ve learned that those of us who go through radiation bear the pencil-tip sized tattoos that tell the radiation therapist how to line up our bodies each day. And though the tattoos are tiny, they really bother some of us. I simply don’t like the black dot between my two breasts, resting there like a bull’s eye. (Getting my other three tattoos was emotional and much more painful than a shot, but they don’t stare back at me when I look in the mirror, so I don’t find them such a nuisance.)

I’ve learned to lie very, very still and that radiation (at least mine) truly is quick-quick, so that I am usually in and out in 30 minutes or less.

I’ve learned that the beams of green lines this way and that on my upper left quadrant mean the machine is setting up, and that when it seems the machine is doing nothing at all, it is radiating my body.

I’ve learned that I can’t shave my armpit for risk of a nick leading to infection.

I’ve learned that, like chemo, the effects are cumulative. My slowly reddening skin will likely look and feel badly sunburned by the end. (If I’m lucky, that will be the worst that happens to my skin.) And though radiation-fatigue is nothing like chemo-fatigue, I can expect a steady decline by around week four.

I’ve learned a long list of lifetime risks, and I’ve learned that they usually cross my mind when I’m lying on the radiation table, but that otherwise, I am pretty good about not thinking about them.

I’ve learned that radiation dehydrates, which is why they think I was having such severe head rushes—and severe changes in my blood pressure and oxygen levels—every time I sat or stood up. (On doctor’s orders, I spent a couple of days guzzling Gatorade, which seems to have fixed me right up.)

I’ve learned to protect my radiated skin from the sun; that swimming in fresh water may or may not be okay depending on how my skin reacts; that sitting in a wet suit is a no-no, as is going in chlorinated pools. I’ve learned which lotions are okay to use, and to apply them three times a day but not for at least four hours before radiation, or they need to clean it off before my treatment.

I’ve learned once again that kindness buoys me, and that the radiation suite at Cooley Dickinson Hospital is full of kindness, so that most days, I come and go with a smile and a heart full of gratitude, because I am seemingly surrounded by angels who are carrying me through this doozy of a brain-growing experience.

(By the way, I’ve also learned that chemo-brain is real, so it’s a good thing there’s some new knowledge coming in, since it seems a lot of the old knowledge–i.e. my vocabulary along with my ability to orally string words together into coherent sentences–is seeping out.)

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.)

The end of chemotherapy brings other endings, as well.

One more chemo to go! The feeling is bittersweet (similar to what I wrote about in an earlier post), for there is so much more that will end along with the chemicals pumping through my body: Weekly visits with the nurses I have slowly come to know over the last almost-five months. Three hours of quiet quality time in the middle of the day with whomever brings me. My current routine. And the weekly delivery from dear friends-family, Maggie and Barry.

IMG_0115The first time I went to chemo, Maggie sent me with a bag of gifts, each one individually wrapped with a time taped to the front—my instruction for when to open it, one every 30 minutes for the duration of my infusion. A bright green blanket; a dozen paper hearts, decorated by the family (her and Barry; Owen and Henry) and strung on a piece of ribbon; lip balm; a clementine with a glitter-heart stuck to the peel; the coziest of socks. It was just the thing Maggie would do. The sort of thing we’ve been doing for each other for 20 years now.

A week later, another bag of gifts arrived (once again delivered by Barry on his way to work) and it dawned on me that she might try to do this every time I went to chemo. “Maggie,” I explained, “It’s too much!” After all, I had four and a half months and 15 infusions to go. (And she had a 60-hour-a-week teaching job, twin 5 year olds, a husband, a home, my Caring Bridge site to manage, chronic Lyme disease and friends other than me.) But chemo-day after chemo-day, Barry would arrive while those in my house were bustling about getting kids ready for school and me ready for my appointment, and he would deliver yet another bag of individually wrapped gifts, each one with a time taped to the frImage 1ont. Sweet-smelling hand-sanitizer for my purse; hot pink slippers; hand crafted book marks by each of their sons; a cheetah hat; a pair of sassy underwear; a deck of cards; a puzzle; a poem… the list truly goes on and on and on. (Here is a wee fraction of the seventy five or so gifts Maggie has bestowed upon me since I started chemo in November.)

IMG_0259Some weeks ago, about half way through my infusions, my mom passed me the next little package, and I realized just how much I’ve come to count on Maggie’s gifts. “I know I’ve been encouraging you to stop,” I told her later. “But now I don’t think you can.” I’ve come to depend on those packages over the last few months like I’ve come to depend on Maggie over the last two decades.

Even though I will be saying good-bye to the bag of goodies when I say good-bye to chemotherapy, thanks to the chemotherapy, it looks like I won’t have to say good-bye to Maggie anytime soon.

Endings

I continue to feel okay on the Taxol. The IV steroids that I get the day of chemo keep me wired through the next day and night. Then I crash for a day or two (as I’m doing now as I write this). By the weekend, I am tired but functional. I definitely feel my body weakening. Tried and failed to run last weekend. My legs and lungs just couldn’t do it. But despite the Image 1fatigue, now that the nausea is gone, everything feels easier physically.

My emotions have been less easy these last weeks. I’m doing my best to “not resist what is.” To open my grasping fists and surrender to whatever feelings and circumstances arise. The sadness has been hardest for me after all those weeks of joyful gratitude.

My dad flies back to Oakland this Saturday (after two months in our home, two months of co-parenting my children while he also parents me), and the whole lot of us is sad about that. For me, it feels like another ending. What a rare and magical time this has been. (My mom will stay through February, possibly longer.)IMG_0269

Watching my children ride the breast cancer wave

A word (or fifty) about the children. I realize I haven’t written about them for a long time and that of course people wonder how they are. Short answer: I really think they’re fine. Good and happy and fine.IMG_0042

Longer answer: For one, I think it’s been incredibly positive for them to have my parents here. To have two more adults who love them and make them feel safe and are fun and make this time that is a cause for worry also an opportunity for something special—their grandparents living with them, all of us together under the same roof, harmonious (97% of the time!), for almost two months now, enjoying an experience we would otherwise never have. I imagine Sophie and Harrison will always remember this time, not just as when Mama had breast cancer, but also as the time that Amma and Zayde lived with us.IMG_5088

In the beginning of all this, I was more concerned about Harrison because he was resistant to talking about anything having to do with my cancer—didn’t want to ask questions, didn’t want to be near any conversations—and was clearly keeping feelings inside that would come out in whispered side comments. (“Maybe you’ll be okay”; “Sophie, you’ve heard that word ‘cancer’ before because that’s what [grandma] Ran-Ran died of”.) Sophie, on the other hand, was more transparent, asking a lot of questions, bringing up the cancer whenever it crossed her mind (or so it seemed); and so I trusted that whatever she needed to process was getting processed. (That she’s worried about the cancer. Doesn’t want me to be sick. Wonders whether kids can get breast cancer. Can she tell her friends. Will I please tell her when the cancer is gone. And so forth.)

But in the last weeks, I have felt more at ease about Harrison. I think he’s still more burdened because, or so I assume, he’s older and has a better understanding of the complexities and uncertainties. But he’s talking more, and of his own accord. I’ll share a couple of brief conversations we’ve had in the last few weeks, conversations that often happen at night when I’m tucking him into bed (not unusual with children, I know, to bring things up when they are quietly decompressing their day and their thoughts).

I always tell Harrison and Sophie the day before I’m getting my next chemo treatment, let them know that I might not be feeling well again for awhile. Two plus weeks ago, before my last AC infusion, I was kissing Harrison goodnight when he said he didn’t want me to get chemo. He said, “I’m not so worried about your breast cancer anymore because you’ve pretty much convinced me that you’re going to be okay. But I worry about the chemo because I don’t want you to feel so sick.” We talked for several more minutes until he signaled that he was done, and I left feeling relieved that 1) he’s not really worried about the cancer anymore and 2) he’s talking with me more.

I almost always wear a hat to keep my bald head warm. Every once in awhile I’ll get hot (rare these days!) and take it off; or of course it’s off when I’m getting in and out of the shower. Recently when Harrison saw me with my hat off, he hesitantly expressed some discomfort, saying, “It just makes me feel IMG_5747a little funny seeing you without your hair. It’s so different and it reminds me that you’re sick.” Again we talked for a bit, and since then I try to keep my head covered around him. Then the other night, again when I was tucking him into bed, he gently tugged at my hat. I didn’t understand at first what he was doing, but then I asked, “Do you want me to take my hat off?” He said, again a bit tentatively, “Yeah, it still makes me a little nervous, but I also want to be reminded sometimes of what you look like now.” So of course I took off my hat and asked if he wanted to touch my head, which he did, and then he said, “Okay, you can put it back on now.” It was a tender exchange that again left me feeling like, “My boy is okay.” (And sweet as can be.)

Treatment Check-In: Chemo, Take Two

Two days after my last post on Christmas, I got some version of Sophie’s stomach bug, which lingered pretty much through school break. (That chemo-suppressed immune system again, or so I assume, since I was the only other one to get it in a house full of people, and I’ve never been one to catch those stomach bugs.) I still managed to have a brilliantly happy holiday with Josh and the kids and my parents.IMG_5221

Last Monday, I had my last of four Adromycin Cytoxin (AC) infusions, AC being the one of my two chemo regimens that is apparently much harder to tolerate. As of this weekend, I started feeling more myself physically. (Which mostly means less nauseated all the time; I’m still low energy but especially with all of my wonderful “elves” helping to keep my life afloat, the low energy doesn’t bother me much… except for when I’m struggling my way through a gawd-awful-painfully-s-l-o-w run, and every one of my very sporadic runs these days is gawd-awful-painfully-s-l-o-w.)

Next week I start 12 consecutive weeks of Taxol, the second and last chemo concoction. Taxol is apparently much easier to tolerate. I’m told I’ll still be very fatigued but won’t have the intense nausea. I’m hopeful but also skeptical, since I was also told before starting AC that it wouldn’t be so bad with all the great, new nausea drugs.

So now, I wait. Wait to see how I respond to the Taxol next week. Wait to see if I respond consistently in the couple of weeks that follow. Wait to see what this next phase might entail.