Grief and Gratitude

I am tired of writing about grief because I am tired of grieving. I have been here before, teetering at a crossroads. I have learned some things over the years, like the importance of letting myself feel whatever it is I am feeling. I have learned the difference between honoring my feelings and wallowing inside of them. I have learned (though I don’t claim to be perfect at it) to notice when it is time to make a conscious shift in perspective—when doing so doesn’t mean pushing away feelings that need to be felt, but rather, slowly shedding what is ready to fall away.

More than one person has reflected my experience back to me, describing my emotional state like that of a wounded animal. I have been battered, shell-shocked, shaking with fear, and hence too timid—and far too exhausted—to leave my den. But I have begun to sniff the outdoors; to circle the perimeter before crawling back inside.

I still carry my grief with me: somedays, like today, I carry it on my chest like a ten-ton weight; but yesterday I carried it in my back pocket and laughed like I haven’t laughed in weeks.

I know healing, like life, is not a straight trajectory. I know not to get too attached when the days feel easier, just like I know not to give up when the days feel unbearable. I carry a strength that I have built, one challenge at a time, brick by brick by brick, and it will get me through anything.

I carry fear and rage, but I also carry joy. These days, it mostly lives in my back pocket like yesterday’s grief, but I know it’s there. I can feel it like a seed, precious, with an entire garden living inside its shell.

heart seed

I want to water it with gratitude and watch it bloom:

I am grateful to be running again, slow and heavy, but running nonetheless.

I am grateful for all the women who, because they have been through what I have been through—are going through what I am going through—understand even when I don’t have the energy to explain.

I am grateful for this week’s sun, hot and bright and luring me out of my skin.

I am grateful for the people who have never waned in their presence and support; and for the people who have shown up unexpectedly with their presence and support.

I am grateful for my family’s tree-planting ceremony; and for our new tree (a
sweetly-sad looking specimen that will blossom into a beautiful weeping cherry); and for our meditating frog that makes me smile every time I look at him. (I’m not sure why I think it’s a him, since I usually go with “her,” but I do.)
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I am grateful that my children love each other the way that I always wanted a sibling to love.

I am grateful for my home, which wraps its walls around me like a cocoon.

I am grateful for Josh, my love, for loving me still. For loving me more than ever.

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Asymmetry, Grief and Love

When I look at my naked body in the mirror, I cry.

For days, I’ve been trying to write this post, but I can’t seem to get past that first line. Where do I start? How do I attempt to unravel the layers of emotion that have formed over these past couple of weeks since my second surgery?

Let me start with some facts: The surgery successfully addressed what turned out to be a seroma, not a hematoma. (As far as I understand, the main difference between the two is that a seroma is essentially a collection of clear fluid whereas a hematoma involves blood. Both can apparently lead to Dolly Parton sized breasts.)

Recovery was, as expected, quicker and easier with this surgery than with my mastectomy. I was up and about after the first week. Unfortunately, because of the seroma, I needed a drain. If you’ve never had a drain, trust me, you don’t want one. I forgot to take a picture of my own drain, so I scrolled the internet to give those who’ve never seen one an image of what I walked around with for the last couple of weeks (and for three weeks after my first surgery).

drainMy drain was attached to my bra with a safety pin not this nifty looking eyelet. The long tube that disappears under the bra is inserted into the skin. Then, every day, I (and by “I” I mean Josh, because he usually did it) got to empty and measure the fluid like this (though my fluid was less blood red and more serus):

empty drain

Today was a good day because, after two weeks, I finally got the damn thing out, which means I no longer have to walk around with a plastic tube and container attached to my body, collecting fluid from my wound. Bulky and gross and a great way to feel like a sick person.

As for what else I hoped to accomplish with this unexpected surgery—symmetry and a regained level of comfort in my body—that did not come to fruition. My reconstructed breast (and nipple) is now noticeably smaller than my healthy breast. That, coupled with the physical scars, makes me… well, it makes me cry. I feel ravaged, ugly, older than my years (the post-chemo gray hair isn’t helping); and every time I look in the mirror, I am reminded of what I’ve lost and what I’ve been through and what lurks on the horizon as my new, biggest fear (recurrence, metastasis, telling my children I have a cancer again, missing out on all the things I don’t want to miss in their lives).

But here is the amazing thing: Despite all this— the disappointment, the self-consciousness, the crying, the fear—I generally feel happy.

Growing up, when I was having a hard time about something, my mom would say, “Go somewhere else on the canvas.” Meaning life is like a giant canvas, with, say, one group of friends in one little corner, an aspect of work in another, a particular family member somewhere else, an aching back up top, cancer down below; and that whatever the pieces of our lives might be, there are, for most of us, many of them. When one piece of the canvas bogs us down, it doesn’t mean the entire canvas has to go down with it; we can move our attention elsewhere. For the most part, this is easier said then done for me, but by some miracle, the grief I feel these days in my moments of crying is confined to those moments of crying.

canvas

This morning, I crawled into bed after my follow-up with my surgeon and had another tear-fest. I cried for all the reasons I’ve shared, and because I now need to decide whether I’m going to have yet another surgery, purely elective this time, to achieve some symmetry. There is no rush to this decision, but it weighs on me with the same guilt and shame that weighed on me when I had to decide about reconstruction. I feel ashamed by the thought of choosing a surgery I don’t need to “fix” something I don’t like about my body. Why stop with my reconstructed breast? Why not suck some of the fat out of the saddlebags I’ve always wished away? Why not erase the bags under my eyes? Tighten up my knees, which I’ve always found a bit saggy? Certainly these are choices that many people make, but they are not choices I ever thought I would make. Yet here I am considering what feels like a similar kind of choice, and it weighs on me. I would never, ever begrudge another woman for choosing reconstruction after enduring the traumatic loss of a breast, but I am struggling to find that same compassion and understanding for myself.

Time to go somewhere else on the canvas. I think I’ll linger for awhile in the fact that I am more in love with Josh than ever before, and that to feel that way after 15 years is incredible. Josh, who lies down with me in the middle of the day and tells me, while I cry, that he wants me to feel whatever I’m feeling, but then to remind myself that we will get through this, one foot in front of the next, just like we’ve gotten through everything else. Josh who sings to me, “You are beautiful, in every single way;” and who, after this latest surgery, wouldn’t let me off the couch for days after I felt like I could once again help with the kids and the house; and who is patiently waiting for me to watch Big Love and then read side-by-side in bed like the wonderfully old married couple we are.

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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.

Joy

I want a break from writing about loss and grief and fear. I want to write about joy. I want to practice joy. Because I want to feel joy.

These days, I spend my days rushing to fit “everything” in before my surgery (which is on May 20th, two weeks from today). These days, when people ask how I’m doing, I say, “Eh.” These days, I am less in my day, (less in my body).

And so I want to ponder joy. Not in a I-wish-I-could, I-wish-I-had, maybe-some-day sort of pondering way. I want to think about what will bring me joy this day. I want to wake up each morning and have at the top of my to-do list:

JumpingJoy#1) Think about what will bring me joy today. (Jenny, what will bring you joy today?)

And:

#2) Do something—maybe do two or four somethings—that will bring me joy.

So what brings me joy?

  • Slowing down enough to spend 5, 15, 30 minutes of focused time with my children. Like this afternoon, when I helped Sophie turn a shoebox into a bed for her stuffies. It only fits one, and she has about 97 of them, so she explained that whichever one will go to school with her the next day gets to sleep in the bed. “Makes sense,” I shared. “Gotta have a good night sleep before school.” Then Harrison and I spent about 12 minutes working on a puzzle during which time he, not surprisingly, taught me plenty about how to tackle a puzzle. Joy followed by a little more joy.

What else brings me joy?

  • Reading my book in the middle of the day.
  • Reading to my children in the middle of the day. (I’ve never understood why that joy doesn’t translate to bedtime-reading. Unfortunately, bedtime-reading is typically the opposite of joy for me.)
  • I’m admitting it here: watching bad T.V. in the middle of the day brings me joy. It’s my ultimate guilty-pleasure—what I imagine playing hooky feels like, though I never did play hooky. Guilty, which is why I always close the curtains. If you walk by my house in the middle of an afternoon and the curtains are closed, you’ve busted me watching bad T.V.
  • For the record, if I’m watching bad T.V., I’m also doing something in front of the T.V. Sometimes it’s folding laundry or returning emails or opening mail, but none of that brings me joy. What does bring me joy, tremendous joy and calm and fulfillment, is doing a good craft project in front of bad T.V. A scrap book for a dear friend. Photo albums to pass along to my kids someday. I would gladly spend days bad-tv-crafting.
  • Sitting around a table with food and/or drink and good friends.
  • Sleeping in. Though that might be more relief than joy. Still, I’ll gladly take it.
  • Eating a delicious piece of fruit. If I’m paying attention.
  • Writing something that I feel good about.
  • Sometimes, when I can really dig in without interruption, cleaning out my closets and drawers and corners brings me joy, like it did this Sunday when I helped fill a dumpster full of crap and a minivan full of Goodwill donations.
  • Finishing a great run. Sometimes the run itself brings me joy, but only if it involves good conversation and minimal pain. Even then, I think I’m happiest when it’s over and I can savor the memory and the feeling of success without so much exertion.
  • Connecting—really connecting—with another human being.

fields flowersTomorrow, I have a too-busy day. I don’t like too-busy days. But I think I’ll make it my goal to slow down enough to collect some joy along the way.

My Day In Gratitude

I woke up this morning feeling a bit blue and a bit sorry for myself. I think I was emotionally hung over from yesterday’s no-big-deal appointment with the surgeon that nonetheless left me teary. Surgery has always been the scariest part of my treatment plan—me lying unconscious in a room full of strangers, none of “my people” there to fight for me, to keep on eye on me, to keep an eye on them. And here it is, right around the corner. Real.

So this morning, after I pulled myself out of bed and pulled back the curtains to a gray, rainy day, I decided I would practice gratitude. (For a quick and beautiful and moving dose of gratitude, I highly recommend this video, brought to me by my children via their to-be-grateful-for elementary school music teacher.) Gratitude has proven itself to ease my woes, buoy my spirit, shift my perspective. As I walked through my day, I compiled a mental list:

I was grateful for Harrison, who always, including today, kisses me and hugs me and waves, “Bye!” before running off to his classroom and his independent life.

I was grateful that I got to hold Sophie’s hand as I walked her to her classroom.

Grateful that I got to leave her with Ms. Brown, teacher extraordinaire.

Grateful that I ran into a woman I adore but rarely see, and that we got to chat in the parking lot about gratitude.

I was grateful for the warm rain.

Grateful for the mysterious mist that reminds me of my hometown, San Francisco.

Grateful for a morning spent with my friend Nunia, meditating, sharing our intentions for the week, writing side-by-side.

Grateful that I as I yawned and yawned and yawned with fatigue, I was sitting on my couch, a blanket spread across my lap and nowhere I had to be and no one I had to take care of for hours.

Grateful for the Cancer Connection and for Mary Ann and her tender, healing touch during my reflexology session.

Grateful that I had a car to drive me home.

Grateful that I had a home to return to.

Grateful that when my children came home from school, the three of us laughed together in the living room while they bounced their boundless energy on the couch and I listened, really listened, to them share about their days, and for 12 whole minutes, I refrained from nagging them about putting their lunch boxes away and washing their hands.

Grateful that after they washed their hands and put their lunch boxes away, we all gathered in the same room again, where Harrison played with his Legos and Sophie played piano and I read the paper on the couch, the three of us together.

Grateful for my view of the branches through the window whenever I looked up from the paper.

Grateful for the article about giant salamander bones I got to share with Harrison and for the kids’ maze and crossword page I got to share with Sophie.

Grateful for the sound of the rain.

Grateful for my writing and my writing groups and my writing friends.

Grateful for my colleague, Julia, who always comes through for me.

Grateful for my cousin Cathy (Josh’s really, but I’m officially claiming her as my own) for giving my heart new reason to grow.

Grateful for my arms and my legs and for managing to eek out a few sit-ups and push-ups.

Grateful for the delicious quiche that Shawn delivered on my doorstep and for the time spent with my family of four—Josh, Harrison, Sophie and me eating together at the dining room table.

Grateful for my doorstep and my dining room table.

Grateful for the sound of Sophie’s snoring and the feel of Harrison’s skin as I rubbed his back.

Grateful to have this life and this day.IMG_0389

What are YOU grateful for? I would love to know. (Maybe you’ll share your own list in a comment?)

Letting the Wind Carry Me

In one of my meditations last week, an eagle soared into my view. But as it aimed for the sky, something held its leg. The eagle shook and squirmed, flapped frantic wings. And then suddenly, the “something” let go. First, the eagle soared free, up and up; and then, she simply floated, surrendered, the wind carrying her in all her power and luster.

The message was clear and beautiful and welcome. This is my time to let life carry me. (Where will it take me?) All I need to do is surrender. To let go of the grasping thoughts, the free-floating anxieties, the list of shoulds, the fear of what might happen if—so that I am no longer caught like that eagle’s leg. So that the wind can guide me wherever it is that I am meant to go.

Tomorrow, my mom leaves after living in my home and in my life for three (wonderful) months. Today, and in and out of a restless sleep throughout the night, I felt myself flapping frantic. Grasping to all of the things I don’t want to end (our morning mediations; watching West Wing in the middle of an afternoon). Rolling around in all of the things we could have and should have and oh how I wish we’d done these last months (taken more photos, that Friday evening yoga class). Fearing the long list of things to fear (my first morning alone; the too-quiet daytime hours; solo-parenting with chemo-fatigue strapped to my shoulders).

I could havImage 6e spent all day with my leg, my spirit, caught. And then I remembered my eagle. Let go. Let go. And so this is what I got today: An arm-in-arm walk on the bike path. My first sun in what feels like seasons. Lunch downtown on a Thursday afternoon. A hug in the kitchen. The wind carried me into all these gifts with my mom. In the words of a friend surviving metastatic breast cancer, “It was a good day.”