Survivor’s Guilt

This morning, I dumped my overflowing bag onto the passenger seat of our car. The yellowing leaves were gathering on my windshield, wet and sticky, as I drove past the Cancer Agency to Whole Foods. It’s odd we live so close. Last fall and spring, I used to ride my bike in five minutes to the multiple appointments and blood-draws and scans and chemos.The air is getting crisp, like it was then, the rain leaves the streets permanently stained with wet, and the leaves gather in the gutters. It’s starting to feel like that time again. Thank god it’s not, I shuddered, as I passed the Cancer Agency parking lot and recalled the exorbitant parking fees.

I was at Whole Foods making a salad for lunch when someone tapped me on the shoulder. A breast-cancer-buddy. Making herself a salad, too. The only difference was that her salad was to be eaten before her chemotherapy appointment made her too nauseated, and mine would wait for the brown-bag working lunch scheduled with the other instructors teaching the same UBC course as me. We hugged, exchanged updates, rolled our eyes at chemo, and promised to get together for coffee soon. Her stomach will probably be too sensitive for coffee, though, so it is way more likely we will end up sipping tea or walking along the Seawall, sans food and drink. I was glad to see her, and also, glad to part ways knowing I wasn’t the one going to stare out across the bay from the fifth floor of the Cancer Agency while they pumped poison into my bloodstream.

And yet, I am irritable. I wish we could spend time together without the cancer, I wish we didn’t speak the cancer language, I wish she was better like me, and making a salad for a working lunch. I know, though, that such platitudes are useless, and even damaging. She told me this morning, that no one understands she’s not getting better, that no one accepts what she has to: that she will be living with an incurable cancer for the rest of her life. So while I wish it was otherwise, the only option is to step into what actually is, and to acknowledge what actually is, and to be real and realistic… and while doing so, to pour love and caring into being present and whole and real.

But still. I can shake the feeling of unfairness. How did I escape? Did I escape? They think so. I think so. But I did nothing to dodge the bullet that she did not. I was running a different race, and I know this. Knowing, though, doesn’t make it easier to accept that I have “no evidence of disease” scrawled across my chart, and she has “stage four” scrawled across hers.

It feels like I should never take a nap, never rest, never waste a moment because for whatever random reason- indeed for no reason at all- I am well and she is not. And yet that demand of myself makes me cranky and I wish for something else. I think this is what they call survivor’s guilt. It’s one of the reasons I shudder when people call me a survivor. It feels like when you crack that word open and look inside, what you see is a bunch of cancer patients on one side of those twelve-foot walls used in team-building, except this one is a fifty-foot wall. On one side of the wall, all is happy and well, and people are celebrating and pointing and calling each other survivors. But when you look on the other side of the wall, you suddenly realize that the celebrating people got to the “survivor” side by stepping on top of all those dead and dying bodies on the cancer-side, the piles and piles of people who didn’t make it. “Survivor” feels like stepping on all of those beautiful bodies in order to climb over that fifty-foot wall, and celebrating feels like erasure when what is called for is bearing witness.

So sure, I guess I survived. But the word survivor feels ugly. And people not surviving forever and ever makes me angry, and so does the fact that at some point, we will all die. That effing sucks. And so in the meanwhile, I’ll bear witness. I don’t want to be climbing any fifty-foot walls, especially if I have to step on beautiful bodies, even if climbing over those beautiful bodies is only metaphorical. I want none of it. What I do want is honest. Witnessing. Hope grounded in reality, not hope tied with a pink ribbon. Love. Curiosity. Laughter. Tears. Adventure. Quiet. What I do want is honest, honest love.

On Being Read

I’ll begin by saying that I know I’ve written about Callanish often lately, most recently about Kathy’s all-too-soon parting with the earthly world. It’s only because they’ve made such a wild, and surprising difference for me. But tonight, I attended an event marking the turn of seasons, the equinox that happened today at 7:29 pm PST. When I walked into Callanish tonight, I was greeted by the most stunning of bouquets, a bouquet filled with orange and purple and red and deep jewel tones, a bouquet capable of taking my breath away, a bouquet in utter and total stunning beauty. And so went the evening of counsel: beautiful, breath-taking, heart-open, full. People remembered Kathy, and they shared their desire for a hopeful future, and they let us into their complete heartbreak surrounding her death, and they sang songs and trusted and listened and ate cookies.

Urged by J The Wise, the woman at the helm of Callanish, I tried to listen entirely, I tried to hang onto each word, I tried not to think about whether I would talk (no, I had already decided) and I tried to savour each word, each chord, each feeling, each tear, each nervous laughter, each moment of silence, each hand reaching into mine, each line of wisdom shared.

I did speak after all, and more than one person asked me, afterwards, if I was “the Chelsey that wrote the blog.” I was. indeed. How interesting to be told by others how much my tiny little corner of networked media means to them, how profound for so many people to tell me that my brief words about a woman I only knew to be great meant so much to them.

I almost didn’t know what to say. I giggled nervously. I thanked them for reading. It wasn’t until I was on my way out the door that I finally worked up the courage to say how I really felt- When  The Callanish Doc In Residence told me she read/watched again and again, I told the The Callanish Doc In Residence how honoured I was that something I wrote could touch her so much she cried. And it is true. It is so heartening to know that the writing that helped me to process news that shook me to the core- news that came with a sadness that surprised me- could also help someone else, could also be meaningful to someone else, could also touch someone else.

I think it is the quality of listening, the quality of hanging on words and ideas and emotions, the quality of being so present that nothing else exists, that is so precious and hopeful, this quality that draws us together, demands we be together even, in community.

Some people- OK, lots of people- would say this quality of listening is outside of technology, a quality of listening that manifests in circles without cellphones,a quality of listening achieved in community counsel circles with stunning bouquets and iPhones silenced (but still buzzing- I heard them). I beg to differ. As always, I love a good theoretical debate. But tonight, I’ve also got an emotional, embodied experience that makes me shake my head at claim that this quality of listening has something to do with/out technology.

Because you see, you’ve all given it to me. You’ve shown me that in this very digital space, there is a quality of listening to be had that is deep and profound. You’ve shown me I can be heard. You’ve shown me you listen (and I do know how many, many of you read this blog daily, and I am touched. I won’t pretend I don’t check the stats like, always. I love seeing the countries this blog makes it to!) and you’ve shown me you value these words, through your sheer consistency, and tonight, through your words and kind, kind, comments.

I am humbled. Humbled to be read, to be understood with a quality of listening that is rare and deep. Humbled that you read these words, because truth be told, I’m much more articulate in writing than I can ever be between silly laughs and awkward pauses in my speech.

And so I thank you. Thank you for listening. Thank you for continuing to listen. Sometimes I wonder if my “readership” will go down now that I’m cancer-free (or something- Dr. G never calls it that, but she does speak of hoping I’m “cured”) but amazingly,  you continue to read. How grateful I am to you, how generous of you to allow me this space to share what I know and what I wonder and mostly, what I don’t know; how kind of you to read with such attention, to comment with such open hearts, to love wholly and without expectations. How profound to experience a quality of listening so whole, so heartful, so wide that it jumps across the globe. It is amazing to imagine my community, my community reading my posts- and to know that my imagined community is so impactful it consistently, coherently, and relentlessly, in a hundred wild ways, makes material impact on the world.

Tonight, I am humbled. Because you listen with a quality I never anticipated, because this space has come to mean so very much to me, because I am certain I wouldn’t have gotten through the cancer without you reading this blog, because storytelling is part of who we are as humans, because you care, I am humbled.

the worst part

I got excited.

I thought we could have a baby, and soon. I was imagining strollers and waking up in the middle of the night and that tiny-baby smell. I started thinking about how maybe things would work out, maybe the cancer hadn’t derailed all the baby-making plans entirely. I got ahead of myself. It’s important to be measured and careful in thinking about having a baby via surrogacy, because there are so many things that could go awry. Things could get out of hand because it’s such a profoundly weird thing to contemplate for all parties involved, because it requires such massive amounts of paperwork and documentation. Thing is, I probably wouldn’t use “measured” or “careful” to describe my personality. Certainly I am organized and efficient and I have my sh*t together, but I don’t like to wait. I like to run with the wind with all abandon and move quickly and jump into new situations with both feet at once. Of course, you can’t exactly run with the wind when you’re asking someone else to carry your baby and there are so many hearts and souls and bodies involved, and someone could get hurt.

This is the worst part of cancer. The fertility derailment is the worst part of cancer, I mean.

There are less hearts involved if you hire a surrogate though an agency, but that feels creepy-crawly, it feels like baby-buying and it feels like something I want to shrug off, though the possibility lingers. And it is $30,000. That is the easier route, and also the totally unaffordable route, but it’s clear to me why some people choose that route, why they don’t want to risk heartbreak, why they don’t want to get family or friends involved, why they have fundraisers and sell heirlooms to pay a stranger to carry their baby. I get it. I also get that this is not an option available to most young adults who have had cancer, for financial reasons.

Sometimes I think I should just go off my estrogen blocker and get pregnant myself, and I will begin my research on this option in earnest, tonight. The gist of it is that my cancer responds to estrogen, and the estrogen-blocker I take every night would be potentially harmful to a fetus. I take this estrogen-blocker to prevent a recurrence: even though I’m cancer free right now, this drug makes a serious dent in the possibility that my cancer recurs. It’s interesting, because the estrogen-blocker (tamoxifen) used to be used as a fertility drug, until too many babies were born with birth defects.

And so I’m left in a quandry: wait another year, until the oncologist semi-approves of me going off the drug and get pregnant myself as it appears I’m still fertile; get pregnant now, anyway, because I cannot wait even if it means going off the estrogen-blocker; or muddle my way through surrogacy and search for someone who might be in a place in their life to carry a child that is not their own, now. There are no good options. It is the worst part of cancer.

What’s a girl aching to have a baby to do? Certainly, I wish we hadn’t waited until now. I wish we hadn’t listened to the people who said we should wait till after the Ph.D., I wish we hadn’t talked ourselves into the sensibility of waiting, I wish-I wish-I wish, but as we all know from trying to wish cancer away, wishing falls flat in the face of reality. I want a baby. I think we would be great parents. Now’s as good a time as any, and I so badly want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby.

Someone wise told me once that grief is the space we reside in when we refuse to accept life as it is. And perhaps they were right. I cannot accept that we can’t have a baby, I don’t even know if I can accept we can’t have a baby, now. And so I put this out to the universe, not expecting a response but in grave need of guidance: What do we do now? Do I go off the meds, and get pregnant? Do I search high and low for a surrogate? Will one appear in my life, or is someone already in my life ready and waiting, because the universe knows how much we want a baby? Do I decide to wait until my oncologist grants semi-approval? Do I forget the whole baby-making endeavor entirely and focus on writing an academic book?

Ha. As if I could forget. Anyone who knows me knows how very stubborn and determined I am. Watch me make this happen. Somehow.

So community of mine, spread the word. We’re looking for an answer here, in the form of research about very young women and tamoxifen and pregnancy, or in the form of contacts and ideas and innovation, or in the form of support and love and care. So community of mine, where do we go from here?

chipi chipi

When the fog hangs low in the city of Xalapa, Mexico, and when the air is heavy and damp, and when the clouds make the mountain peaks disappear in the distance, this is when my Mexican host mom from so many years ago would call the weather chipi chipi. When someone feels raw, eyes pregnant with tears, heart wide open and the sting sharper than when you scrape your hands on cement, this is when my Mexican host mom from so many years ago would call the mood chipi chipi. 

Today there was sad news, news that matched Vancouver’s chipi chipi weather, news that felt like the cold air and the big, fat rain drops falling onto the sidewalk. Someone who was a bright spot in the world, someone with a heart full of love and care, someone who was most certainly present in the world only a few months ago— that someone isn’t here anymore. Kathy’s gone. She left. Her hands are not chopping onions in the kitchen, she is not mixing pancake batter or planning meals or singing songs in community. She is gone. How oddly final.

The Art Therapist Who Presides Over Feathers and Sand and Acrylics called today, about something else entirely. I knew something was wrong as soon as I picked up the phone. Her voice was heavy and measured and sad, as she shared the news that her dear friend- and the woman that had beautifully, hopefully, awesomely cooked stunning meals for us when we were on retreat this summer, was gone. Kathy was a nutritionist, a cook, a woman who filled plates with green, with heart, with vitamins, with love. She sang with us in the evenings. She gave us apples and coffee filters so we didn’t have to walk to the kitchen for a pre-breakfast snack. She cared deeply, and she poured her love into the food she made at each meal-time, and the magic, the friendship, the love, the hope- you could taste it. She nourished us, she cared for us, she helped us heal.

And she is gone.

I didn’t know this woman well. She explained to me one morning, as she stood beside the bread-toaster at breakfast, why spelt flour is OK even though it has gluten in it, and why it is so different from wheat. She told me about  how she found the whole, diverse ingredients of Mexican food to be so healthy even decades before healthy food was trendy, and we bonded over our shared love of Mexican food. She sliced an apple for an injured mouse I was caring for, and reminded me to make sure the mouse had water, too. She cared.

I know she cared because she made me meals without mushrooms. That’s right. Not because I’m allergic, or because of something serious like that, just because I hate mushrooms. Everyone else had their mushroomy meals, and she made mine, separate, waiting for just me, those enchiladas without mushrooms and that bowl of leftover veggie soup instead of cream of mushroom. It seems insignificant, but it isn’t. Rarely have I felt so cared for, so carefully accounted for, so visible, as when Kathy lovingly prepared me something different, just because I didn’t like “what was for dinner.” I come from a family where what was for dinner was what was for dinner, and there wasn’t a second option. Take it or leave it, but don’t expect to have ice cream if you leave it (sound familiar?). And so imagine the care, the surprise, the relief at being so seen, so visible, so tenderly accounted for- that someone made me food without mushrooms. The first time she gave me a special plate my eyes got wide, and I thought “This is for me? Really?” It was. It was for me, those plates without mushrooms. It was one of the times in my life I felt most cared for. No mushrooms. Not a single one. How kind. How special. How thoughtful. I was so touched, so loved, by Kathy.

And so it feels chipi chipi. My heart aches for her, and I wonder who was taking care of her, I hope someone held her close and gave her fuzzy blankets and made her warm tea, I hope she knew how very loved she was. And I am afraid she was alone, I am afraid she didn’t get to share those last moments with loved ones, I am afraid she didn’t know how loved she was. Maybe she did, and I will hope so. My heart aches for her colleagues, the other facilitators at the retreat who worked with her and loved her, and who have lost a grand friend. My heart aches for her family,  for those closest to her, those with a big giant Kathy-sized hole in their hearts, a hole that will never quite be filled again, a hole who’s edges will always ache, even after they have scarred over and formed a new shape where Cathy was. Chipi chipi because the world feels cruel and harsh and cold, chipi chipi because it doesn’t seem fair or real or believable, chipi chipi because she was so full of life, and knowing that she won’t ever inhabit the world again, move again, love again, laugh again, is so very dissonant that it sounds like two young musicians playing what should be a lovely sound, but instead one is playing B and the other B-flat, and it scorches the ear. It sounds wrong. Chipi chipi, because someone great isn’t here anymore. Someone I didn’t know well is gone now, but she was someone I knew well enough to know we should be remembering, mourning, missing, and again remembering. I knew her well enough to know she was great. Chipi chipi, indeed.

In this afternoon of chipi chipi, I did a few things. I closed my laptop and took a deep breath. I talked on the phone to a good friend. I walked to yoga in the rain. I practiced hard, and hot, and whole, and it felt good. I walked home from yoga in the rain, and I made a chicken and tomato dish for dinner that was topped with piles of fresh herbs and parmesan, and I think Kathy would have approved. And then I made this little stop motion. For you Kathy, because the world is a little more chipi chipi without you.

the head, the heart

“It was worse for me, than the cancer itself.” When I heard those words, I sighed a big, giant sigh of relief. On the other end of the phone line was a woman telling me about how cancer stole her fertility. It was worse, she told me, than the the cancer itself. I thought I was the only one. I wasn’t. And even better, she’s through. Her depleted ovarian function and out-of-commission uterus was worse than the cancer itself, but she got her baby anyway, and she’s expecting a second one soon, a second baby squirming in the uterus of another woman until it’s time for her to hold that baby in her arms. She spoke with wisdom and calm, of the turmoil and of the resolution, and of the way things happen in the end, just as they should. I was relieved.

I always knew we’d have children, it was only a question of when. We were waiting until I was through the PhD, until I had a tenure track position, until we were solidly situated in a city we would expect to call home for a long, long time. That was the way we organized time, how we thought about our lives, how we organized events on a timeline, one after the other. But we’re not on that path anymore. We have no timeline. The organization is amuck. And who knows where we will be in a year, in two, in ten. And more importantly, who cares?

With a cancer diagnosis and many months of treatment under our belt, the way I think of time is entirely different. There isn’t a ton of it, and it’s never certain. There’s always an unknown, a question, a not-knowing. Things could change in a moment, and radically so, or they can march on in the mundane, so mundane that it’s boring. And we can never know. There is no vision, no mirage, no whisper of what the future holds- simply, we cannot know. That’s not hopeless. In fact, it could be just the opposite. It is both hopeless and hopeful, it is impossible and settling. We cannot know, we don’t know what will come. And so planning things like babies and careers is both exciting and pointless. It is thrilling to think ahead and utterly without reason.

Yet part of me is still stuck in the rut of planning, obsessed in the security of what should be, what could be, what is, what was, what I know is impossible. That part of me is my head, telling me we should be practical and watchful, waitful and hopeful, telling me a baby should wait until I have an office on a university campus and something to profess over. But the rest of me, the heart beneath my fake boob that is feeling the world, begs to differ. The rest of me shakes her head at  waiting, at willful planning, knowing that it is useless, knowing that following the heart is a path more studded with jewels than the journey the head wants to take.

I am extraordinarily fortunate to have a family member I trust deeply who wants to carry our baby, in spite of the warnings and risks that made me raise my eyebrows at the fertility clinic. It just seems so intentional, and it is intentional, and intentionality lights the fire of planning, of details of spreadsheets and worry. If she becomes pregnant with one of our embryos, it is intentional. There are so many costs, so many details, so much coordination to be ironed out. It’s not as though we went off of birth control and let what happen will: it’s the willful, intentional, hopeful act of implanting an embryo. It’s way more intentional than sex without birth control.

The intentionality is hopeful and heavy, and brings to bear questions that make me wonder what will happen, if we don’t have enough money? Will it be insane to start a job with a newborn? What will happen if I don’t get an academic job? Is it a bad time? Have we waited long enough to ward off cancer recurrence? Is this smart? Of course, it is my head asking away with questions, when I know that we will be OK, that poor people and wealthy people and stupid people and weird people have babies who are, for the most part, OK, all the time. Besides, my mother assures me lots of people move and get jobs with babies. Thanks, mom, I didn’t know that.

My heart laughs. Who cares if I’m on the job market? Why wait? Haven’t I learned anything from cancer? Isn’t it blatantly obvious, now, that waiting for something you want badly is without reason, that money is the way capitalism chokes the life out of beautiful people, that if its time, its time and the rest will follow?

And my head intervenes. But you’re on the PhD job market. But you have visa costs. But you don’t know where you’ll be in a year. Yes, my heart responds, but you do know. You will be home, somewhere in the world, with Sammy and Benito and Lulu, and you will continue to do something you love, as you always have, and there will be yoga classes and salsas simmering on the stove and friends who drop in to say hello. So in fact I do know where we will be in a year, we just don’t know the specific details I obsess over. But we do know something.

And so? The head? The heart? Who gets to say when we get to implant an embryo into our dear, dear surrogate?