Loss

Fuck.
I'm not even going to apologize for the language. Fuck cancer. Fuck fuck fuck.
I'm in a Facebook group for women who were diagnosed with cancer while pregnant. It's been a really helpful, really supportive group.
A few minutes ago, I learned a member of the group died yesterday. I didn't know her personally, just from the group, from reading her posts and us commenting on the same posts. She had triple negative breast cancer.
She finished treatment recently. She had a lot of pain. She saw her doctors. They found more cancer. Her cancer had metastasized, spread to her bones. Within six weeks, she was gone.
I'm sitting at my desk, a pile of overdue paperwork waiting on me, a schedule of sessions that's gone out the window now, because I'm in no condition to see clients right now. I'm sitting at my desk, and I'm sobbing.
I'm crying for her family, for her small children, her husband, her parents and siblings and friends, and all of the people who knew her joy and her wisdom personally and through the magic of the internet.
I'm crying in terror and hatred of this evil beast called cancer, which has taken so many people I love, which threatens all of us, which threatens me.
I'm crying for me. I'm crying because I cannot imagine the pain her family is going through, and yet I imagine it every day. I'm crying because I know the fear she must have felt when she received the news, because it's the fear that lives in my gut and springs up when I wake in the middle of the night and when I walk into my oncologist's office for yet another appointment and when I hold Finn close and tell him I will love him always and forever until the end days. I am crying because I am terrified that her fate could be my fate, and damitall, I want to live!  I need to live.
Her story is not the same as mine. I know that. Her situation is not the same as mine. I know that. I am doing everything I can do to reduce the chances my cancer will come back. I know that. But my cancer has a 50% chance of recurring in the first two years. I know that. I am taking the oral chemo, which showed a reduction in recurrence of around 15% for triple negative breast cancer. I know that, too.  

And then my office phone range because the parent for my forgotten family session arrived, and I had to quick pull myself together, wash my face, and then walk through the school with my bright red and puffy face.
The distraction was helpful though. Who knows how long it'd have taken me to calm down and recover if I hadn't been forced to in a hurry?
But cancer still sucks. Even worse than the fear of chemo harming the baby (although I knew the studies showed it was safe), even worse than the side effects of treatment: the hair loss, the pain, the exhaustion, the stomach issues, even worse than having to stop working before I was ready, even worse than the financial cost, even worse than the chemo brain, worse than all of that is the constant--and rational--fear that the cancer could return. And if the cancer returns, it could mean death. I'm just not ready for that. I don't intend to be ready for that for another fifty years or so. It's not that I'm scared of death, not at all. I'm scared of not living. What a place to be trapped.


I'm not proofreading. Excuse any errors you find.

Easter Musings

Spring. Easter. Heartache. Change. Hope.

Thursday will mark two years since we lost Pantalaimon. I found out on Good Friday two years ago that I was probably going to miscarry, that the baby we had hoped for and tried for since the previous summer appeared to have stopped growing and did not have a heartbeat. On April 20, I had a D&C, as my body had not yet figured out that I was no longer pregnant. 

Last Eastertime, I shaved my head on Good Friday. I donated my hair to Pantene's program and raised almost $4,000 for St. Baldrick's Foundation. I wore my wig to the Easter Vigil on Saturday night. My sisters and their kids came to visit over their (and my) Spring Break, and we had a great time. 

Last Thursday, I saw my radiation oncologist for my followup appointment. It was so weird to be back there. For two months, I hurried there after work, talked with the staff while waiting for my treatment, showed pictures of Finn if he wasn't with me, handed him off to whichever staff member had volunteered to play with him while I got my boob zapped if he was. For two months, I was deeply involved with the staff there. It was my routine; it was part of my life. And then, with a burnt, peeling, painful boob and the ringing of the radiation bell, it was over. I brought in some peanut brittle and a Christmas card, and that was it. Life went back to...well, I'm not sure there is a normal yet. 

Friday, Good Friday, my mother was admitted to the hospital for chest pains and a suspected heart attack. Just this morning, we learned there was no blockage, and they suspect the episode was related to her blood pressure, which she's had difficulty controlling over the last month. We're grateful, so, so grateful that she is okay. She is going home this afternoon. 

Saturday, I went to the Easter Vigil. Kevin stayed home with Finn, as the time overlapped with Finn's bedtime and Kevin was not feeling well. I needed to go. I needed that touchpoint, that connection, that peace and comfort and solace that comes from the celebration. I had said to Kevin earlier in the afternoon that it didn't really feel like Easter. We were out of town on Palm Sunday, and the 7pm start times for services on Holy Thursday and Good Friday were just too difficult with the baby. It was weird for me to not have those moments. I missed them. And then on Saturday night, we gathered in the beautiful sanctuary at First and St. Steven's UCC, and we had an amazing service. We started in the courtyard with the new fire, the new light. We lit the Easter Candle, we sang the Gloria I love so much, the Sing Glory to God one that takes me back to my days at Western Carolina. We praised, we read from the Hebrew Testament, heard phenomenal reflections, read from the Christian Testament, heard more reflections. We sang Alleluia for the first time in over 40 days. I proclaimed the Gospel; David, bishop and pastor, nailed the homily once again. We broke bread, remembering why we do so, remembering that it is only by being broken that the bread gives us life that makes us whole. We shared peace. We shared peace. We shared peace.

Sunday we celebrated Finn's first Easter with treats from the Easter Bunny, which included new toys to match his development, shoes as he gets ready to start walking, and several books. Kevin and I each got some excellent socks, a couple of games (Joking Hazard for me, Catan card game for Kevin), and a few other treats and candy. We spent the afternoon at Kevin's aunt and uncle's house with lots of family, food, and Easter activities. For the past several years, we've had an adult Easter Egg Hunt, where the prizes are booze and scratch off lottery tickets, and the like. This year, with three young ones in the family, we also had a kids' hunt, though Finn and I napped through it, since he skipped his afternoon nap. The other family tradition is the Schenning Egg Picking Contest. It is a big deal. I'd never heard of egg picking before meeting Kevin, nor have most people, even other Baltimoreans. Wikipedia talks about it here, and the Baltimore Sun wrote about its Baltimore roots a few years ago.  Holy smokes. It was more than a few years ago. 1993 was 24 years ago. How is that possible? Anyway, at my first egg picking, I came in second place, losing to Kevin's dad in the final round. This year, I was knocked out in the first round, despite our efforts to boil hardier eggs using the Instant Pot rather than the stovetop (Kevin and Finn both lost in the first round as well. At least those eggs are easier to peel.)

At this time of year, that time which for me is so full of joy and hope but also and fear and sorrow, it has been a week of shared peace. We are an Easter people, and even at the grave, Alleluia is our song. 

Hope 4-2

Today is April 2, known as Hope For Two Day, celebrating women who were diagnosed with cancer during pregnancy. I was diagnosed with an aggressive form of breast cancer when I was 22 weeks pregnant. I had found a lump a couple weeks before that. 

Despite the incredible support I found in family, friends, medical providers, and strangers, it was in many ways a very isolating experience. I have since found I am not alone. I knew there were other women diagnosed while pregnant, but I'd never even heard of another, much less met another. 

In January, I finally went to a meeting of a support group that I'd known about for a while but hadn't ever been to. There, I met another woman who was pregnant and underwent treatment for her cancer. Her child is now about 4 months old. She told me about and added me to a Facebook group for women diagnosed while pregnant or breastfeeding. I have come to love the support of the group and the women in it. There are a couple hundred of us, all different cancers. Some are recently diagnosed; some are many years post treatment. Some are living with metastatic disease. That scares the shit out of me. 

Knowing I'm not alone has been a confusing and powerful experience. It's comforting to know I'm not alone. It's really crappy to know I'm not alone, that other women and their babies have had to go through this as well. Right after I joined the group, someone put together a video of women sharing their stories. I waited until Kevin was with me to watch it, because I knew I would have all of the feels. I cried throughout. So many women. So much strength. So much love. So many uplifting stories. Watch the video here.

Yesterday Kevin and I went to the Breast Cancer Survivorship Conference hosted by Hopkins. We went last year as well, and it was as excellent this year as before. We had lunch at a table with two women who were diagnosed last year, also while pregnant. One was the woman who added me to the Facebook group, and the other is someone I've been Facebook friends with for a while but hadn't met yet. Her child is almost the same age as Finn. The three of us were all diagnosed with breast cancer while pregnant; we were all pregnant at the same time; we all live in the Baltimore area. It's kind of...bizarre. I'm having trouble figuring out how to describe all the feelings it gives me. 

Blerg. I wish I could figure out how to format pictures the way I want to on this site. It drives me batty.