Last day of breast cancer treatment!

A short but VERY SWEET!! post:

Today I had my last day of radiation and my last day of 9 months of active breast cancer treatment! (I have ten years of Tamoxifen to go, but thank the gods and goddesses everywhere, my emotional state seems to be stabilizing after two months of…. well, hell.) The end of chemo was bittersweet for me, but today is simple: I feel like celebrating.

Thank you to the wonderful radiation therapists, Sara, Mariecruz, Kate and Dana, who tenderly administered my treatment every Monday-Friday for the past 6 weeks. (And yes, I do have purple hair. I felt the urge to do something a couple of weeks ago; now I’m anxiously waiting for the purple to grow out.)

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Moving forward, I will continue to explore questions that have been prominent in my mind and heart these last many months. (As always, I would love to hear other people’s responses!)

  • What brings me joy, and how can I bring more of that joy into my everyday?
  • Who am I really? Who am I now?
  • What about my life do I want to change and what do I want to nurture?
  • For what—and for whom—am I grateful?

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.)

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.

This Week’s Digest

I have a bad habit of torturing myself with what has come and gone. It often sounds like this: “Last week at this time, I was waking up on vacation; now I’m…” “Last month at this time, I was getting ready [for something wonderful]; now it’s over.” I’ve done a fair amount of looking back during my breast cancer treatment, not always to torture myself, but rather to reflect on and take note of all the changes in my life and in my body.

Lying in bed this morning, my mind did a lot of, “Last week at this time…” and I’m happy to say, that today, I came out on top.

Last week at this time, I was struggling to get out of bed mornings and sometimes not getting out of bed much at all. Now, even though I admit it often feels hard upon waking to face my life and my day, I do get up, every single time, and once I do, I feel okay. Sometimes even joyful. And either way, more solid.

Last week at this time, I was barely moving my left arm, never lying on my left
Image 1side, and wary of hugs. Now I am still tender on and a bit protective of my left side, but
I can reach and lift and hug and carry again.

Last week at this time, I was still more exhausted post-surgery than I was through chemo, and when I got out of bed, it was to spend most of my day on the couch. This week, I went for three, two-mile runs. I also went to the farmer’s market and bowling in Shelburne Falls and to a school assembly and out to lunch with friends, and this weekend, I am going to the mountains with my family.

Last week, I cried in my radiation oncologist’s waiting room, so desperate to be done with all of this, so desperate for things to be a little easier. This week, I took it in stride that I have to go to Boston (a couple of hours away) for another opinion about how to proceed with radiation. (My radiation oncologist is torn about whether or not to radiate my lymph nodes. Torn about whether the risk that would bring to my heart and lungs outweighs the risk of cancer recurrence. I’m trying not to think about that too much—that those are my options: either potentially damaging my heart and lungs or potentially dealing with breast cancer again.) And I am taking it in stride that if I radiate my lymph nodes, and if my heart is too close to those nodes, I may have to do my radiation in Boston (where they have a machine for better protecting the heart). Getting treatment in Boston would mean figuring out how to spend most of summer there since I can’t (or won’t) drive four hours every day for six weeks of radiation.

Last week at this time, I was physically and emotionally stopped. Now, I am on the move again, slowly returning to a life outside the confines of my home and my head.

Approaching the Light

Everything stops me these days. Stops me from getting out of bed. Stops me from writing. From answering the phone, returning a text, taking my vitamins, eating something green. Everything either takes too much effort or too much courage.

But I think I’m getting better. No, I know I’m getting better, because on Saturday, Image 4I spent the whole day enjoying (for real, not for-fake, enjoying) my daughter’s 7th birthday (we now have two rabbits: Coco and Peppermint). And even though I spent most of Sunday back under the covers, on Monday, I started taking my vitamins again. (On Tuesday I started taking my Tamoxifen). And yesterday, even though I woke up and watched TV for 3 hours straight, for the first time since my surgery I ALSO did something while I watched; rather than simply lying like a still, stopped blob on the couch, I worked on a photo project on my computer.

And then, for the first time since my surgery, I went for a real walk (not a sick person’s, let me amble up and down the street, so I don’t get bed-sores kind of walk, but a real walk, all the way to my local hospital (Cooley Dickinson) and back, where I’ll be doing radiation. (And where, by the way, I met my radiation oncologist, Dr. Bornstein, who I absolutely, positively adore. How did I get so lucky with these amazing practitioners?)

But before I knew how amazing Dr. Bornstein is, I sat in the waiting room and cried like a damned fragile cancer patient. The type of cancer patient that made the nurse especially kind and gentle, and I loved her for that, but I also wanted to scream, “I just started being this fragile! I’m NOT USUALLY this fragile!”

“I just don’t want to do this,” I explained to my husband when he put his arm around me in the waiting room. All these months, the only other time I’ve cried in a doctor’s office was 2 days after my diagnosis, when the surgeon told me I’d need a mastectomy. Since then, I’ve been green with nausea and dizzy with fatigue, but I’ve never been like this. Never depressed. Mostly, I’ve even been chipper. “You’re in awfully good spirits for someone who just had a terrible first round of chemo and is back for more,” my oncologist commented back in November. And I was. I was in genuinely fine spirits, month after month after month of breast cancer treatment.

But everything stops me these days. Not in a “Let me breath and appreciate the moment” kind of way. In a “How does one go on?” kind of way. In a “Oh my god, every single tiny thing is so fucking overwhelming, how can I even begin to wrap my head around… anything? Taking my vitamins much less taking the time to prepare anything healthier and more time-consuming than a bowl of yogurt or a piece of toast with peanut butter much less taking care of my children? And how about the stacks of mail and how will I ever manage a career again or the fact that I feel six years old inside: small and frightened and utterly dependent and wanting to be loved and feeling so filled up for a fleeting moment when someone shows up just to love me (thank you, oh my goodness, thank you, to those of you who have been showing up with a call, a card, an email, a visit, just to love me a little); but not being able to love myself and pushing people away for not loving me enough or in the right way and then feeling abandoned and angry and hurt and: Stop.

Not everything stops me anymore. I am getting better.

At today’s doctor’s appointment, I laughed in the waiting room. And during my appointment, Dr. Parikh (my beloved plastic surgeon; I still can’t believe I, one, have a plastic surgeon, and two, adore my plastic surgeon) said I seemed better. He said my eyes sparkled with life again. Then, after he examined me, he rejoiced at my recovery and gave me the “all clear” to start radiation. (“Yay?” Yes, “Yay,” because the sooner I start radiation, the sooner I finish.) He gave me the all clear to lift my left arm (gently, slowly, to a certain point); to lift more than a half gallon of milk if my body feels like it can lift more than a half gallon of milk; to run a mile if my body feels like it can run a mile.

greener-pastures
He gave me the all clear to stop stopping. And I am ready. Ready (I hope, I hope, I hope) to get out of bed, out of my head, out of my house, out of this depression.

Pathology Report, Birthdays, Doctors I Adore, and Breast Cancer Be Damned

I realize that a couple of posts ago I wrote about needing radiation without explaining why, which I will attempt to do now. The good news is that the results of my post-surgery pathology report are positive (or so I understand—after getting a medical run-down of the report, I did need to ask, “So, is that good news or bad?”).

As far as the doctors know, they removed whatever cancer remained—and what remained was much smaller than what the MRI showed pre-chemo, meaning I responded well to the chemo. They got “good margins,” meaning there was a good buffer of cancer-free tissue surrounding the extracted, cancerous tissue, reducing concerns about any lingering cancer cells being left behind. There was no cancer in my lymph nodes. There was, however, scarring in one of my lymph nodes, which is a sign that there might have been cancer there before the chemo eradicated it. Which is both good news and bad: good, of course, that the cancer has been eradicated; bad because knowing it might have been in one of my lymph nodes was the tipping point for needing radiation. (Though my understanding now—which was not my understanding in October when Josh and I first met with the radiation oncologist—is that radiation likely would have been recommended regardless, because of how young I am and how wide-spread the cancer was throughout my left breast.) The radiation is meant to kill any free-floating cancer cells that might remain.

What else is going on this week? Pretty much I alternate between tears and rage; bed and couch (or a doctor’s office).

My baby girl (who isn’t a baby anymore) turns 7 on Saturday, and I always make a big deal out of birthdays. But this year, it looks like I won’t be able to pull off very much. On Tuesday night, I was slammed with pain like I hadn’t felt since the hours just after my surgery. As careful as I thought I was being, apparently I overdid it. So I’m back on more or less total bed rest. I must have slept for 20 hours yesterday, all doped up again on pain meds. I’m feeling better physically today but terrified about doing too much and hence 1) postponing my healing even more and 2) missing out altogether on Sophie’s birthday celebrations.

I can’t say that the increased pain, bed rest and narcotics have done much to improve my emotional state.

I saw my oncologist, Dr. Katz, on Tuesday, who is starting me on my 10 years of Tamoxfin. Maybe it won’t be a big deal at all. Or maybe it’ll give me massive mood swings and hot flashes to top off all the other joys of the last seven months.

When I asked about our next appointment, she said she’d see me again in about 3 months. “Three months?!” I exclaimed, with great disappointment. (I would rather 3 weeks. Or 3 days.) I really like Dr. Katz. She is smart and direct and patient and kind and makes me feel like I am not only in the best of hands, but that I am a real-life human being about whom she genuinely cares. I actually look forward to seeing her, which is a big deal, because I can’t think of when else I’ve looked forward to going to the doctor.

Though I might be looking forward to seeing Dr. Parikh, my plastic surgeon, tomorrow. (I say “might” only because I’m pretty sure he’s going to tell me he can’t take out my surgical drain yet, which brings me back to the tears, rage, couch and bed.) I like him as much as I like Dr. Katz: a lot. The first time I met him, he blew apart all my stereotypes about plastic surgeons. He, too, is kind and patient and humane on top of very smart and very good at his job. What ultimately put me at ease about my surgery was knowing he would be in the room with me. (Which is to say nothing at all negative about the surgeon who performed my mastectomy. He, too, struck me as surprisingly kind and gentle for a surgeon—there I am exposing my stereotypes again—and he apparently did an excellent job. I would recommend him (Dr. Arenas) in a heartbeat. But I only met him once, briefly, whereas I met with, emailed with, even ran into Dr. Parikh often; which is why his presence, like Dr. Katz’s, feels like a safe place for me to land these days.)

ImageMy bed is a safe place to land, as well, but I sure am getting sick of it. Why this didn’t happen during chemo, I don’t know. Why I traveled through the first 6 months of treatment feeling more or less okay (and sometimes even strangely wonderful) emotionally, and am now hitting a wall, hard, I don’t know. But that I am: hitting a wall, hard. I am sick of the inside of my house. Sick of being so unavailable to my kids. Sick of feeling crappy. Sick, sick, sick of breast cancer. (Thanks, Greg, for the “screw cancer” poster.)

On the Mend…. Just in Time for Round 3

The night we got back from the Grand Canyon, I was covered in red dust, and I attempted to wash the dirt gathered above my eyes, only to discover that it was not Imagedirt but my eyebrows returning. My eyebrows were finally growing back! Two weeks later, there is no confusing them for dirt. I also have eyelashes again, along with hair on my other various body parts (some of which I would happily do without). The hair on top of my head has been growing for a couple of months so that I assume people not in-the-know no longer see me as a cancer patient. Instead, I am simply an aging woman with a full head of gray.

It’s been weeks since my son has cringed when I go hatless.

And more recently, he and Sophie both have stopped carefully, tenderly, wonderfully making certain that they don’t accidentally sip out of my glass or use my towel for fear of exposing my chemo-suppressed immune system to their germs.

In other words, so much is changing. I am on the mend.

But here’s the thing. A few days after my surgery, when I asked Harrison how he was doing about my breast cancer and whether he wanted to talk about anything, he said, “I feel pretty good. I mean, it’s almost over!” And at the time, I thought, “It’s almost over, my children aren’t worried anymore!”

But it turns out it isn’t almost over.

Yesterday I got the news that I will, indeed, need radiation, which means:

  • For the first 6 weeks of summer, instead of spending lazy mornings with my kids, I’ll be hauling myself to the hospital Monday through Friday for treatment. (Or if I choose the lazy mornings, I can forgo an afternoon outing with kids for an afternoon outing to radiation.)
  • I won’t be spending those two weeks in July at the beach with my family.
  • I can’t expose my upper (radiated) body to the sun. How does that work in east-coast summer?
  • And then there’s the fact that rather than being over and done with this breast cancer “journey” in the next several weeks, I’m looking at another 6-8 months at least, because I can’t continue with reconstruction until 3-6 months after I finish radiation. (Here’s where I start up again with the self-judgment for choosing reconstruction. Am I being vain instead of sane?)
  • To make matters worse, finishing reconstruction might mean (worst case scenario, but still a 30% chance) another major surgery: if the radiation damages my reconstructed breast, and I decide I still want a reconstructed breast, I’d need to start again. Starting again would mean going to Boston for an even more major surgery this time (here’s where I start to reconsider reconstruction altogether, which would lead me down another path lined with challenging implications); a surgery that would use my own body tissue, and hence affect multiple body sites, to build a new breast from scratch.

I knew this was likely. And yet, since I was diagnosed in October and told by the radiation oncologist that we wouldn’t know until after my surgery whether I’d need radiation, I’ve been holding out (so much) hope that surgery would be the end of treatment for me. That come summer, I’d be celebrating, not gearing up for my next round in the ring.

I’m feeling pretty sorry for myself tonight. I hate feeling sorry for myself. It’s a more pathetic-feeling flavor than “sad.”

And when I think about Harrison’s “It’s almost over,” my heart just aches for him. Maybe it still can be almost over for him and Sophie. Maybe this next round can fall on me without it also falling on them.

The two of them (turning-7-next-week-Sophie, and half-way-to-10-Harrison) are as happy as ever, and sometimes, I am struck by how amazing that is. Amazing that someone as unhappy as I was as a kid managed to grow up and make this incredibly blissful life for myself, and two incredibly blissful kids. Amazing that we’re making it through my breast cancer with that bliss intact—and maybe even blossoming.

Soon enough, that bliss will overpower the feeling sorry for myself. But damn, right now things sure do feel sucky.