Day 365: to the girl in the waiting room

Twelve days after my transplant, after I got out of the hospital and was in for my first weekly check-up, I was sitting in the 8th floor waiting room, infusion side. My parents and sister were there. A lean and pretty girl was sitting reading across from us. She had a short dark pixie cut and adorable clothes, and honestly except for her bracelet I don't think I would have known she was a patient. She sent her husband out to get some Starbucks, and I caught the front of her book: Anne Lamott. I was actually feeling pretty good that day, considering. I guess I was just so happy to be finally out of the white box that I'd spent the past two months in, and my throat sores had subsided considerably. I told her I loved Anne Lamott-- and we got to chatting. She told me she was in for her year check-up, post-transplant. I couldn't believe my eyes. She looked so good. She told me about her class (she's a middle school teacher) and that sometimes the kids ask her about the scars on her chest. She laughed. She told me that I looked pretty good for being day 12; that she was still in an Ativan haze around then. She said "It gets a lot worse before it gets better. But it is so worth it. Keep going, soul sister."

And again, I am reminded of Rilke. How could she have possibly known? Let everything happen to you: beauty and terror. Just keep going. 

It meant so much to me (more than I even knew at the time) to see her, looking so healthy and happy and strong, a year away from where I was. At the time, I couldn't imagine myself being in her place. I couldn't imagine it. I couldn't see outside of where I was. I was still so blown over, so caught up in dealing with symptoms of this deadly treatment that I couldn't imagine a time when cancer wouldn't be my life. I hadn't even really started the arduous journey of dealing with everything that cancer disrupts or takes away. I felt it's immediate stoppage, of course: I was ripped out of my life and put on a single-lane fast track labeled in big letters CANCER. It changed everything. And then later, when the solitude and mental exhaustion took its hold, I couldn’t make jokes anymore and winter and depression drove me close to losing my mind or taking my own life--I couldn't see outside of it. There were nights I didn't think I would make it, because I would cry myself to death. 

And yet. I am here. Somehow I have survived this long, trudged this far into the journey. I have a lot of people to thank for that. Some people would say I'm so close that I might as well finish this. I can hardly grasp that I am one year out. It doesn't feel like something that will end. It feels like it can’t end. And in some ways, I don't want it to--what I mean is, some of the changes I don't want to lose sight of. I don’t want to forget how I feel about living now, right now at least. After really experiencing fragility, and beauty and terror all together...it makes me want to live differently. It’s a part of me, and a part of my story now, and I am different. I knew this would change me; and I’m still learning what that means, and figuring out who I am now. 

Today I’m trying to claim that bravery again, finding ways to celebrate even if I don’t feel like doing it 100%. Finding way to be thankful, and trying to thank the people responsible for my still being here (the list is long). Because cancer has changed me. For one, it makes me not want to be afraid of dumb shit that’s not scary. Life is so temporary. Ask for his number! Fly to Edinburgh! Start a new job! Open a café! Apologize! Forgive! Take risks! Ask questions! Do things! Choose Freedom! Choose Love!

The effects of cancer have outlived the cancer. And that is a mixed bag, I must say. I am not whole yet. There are effects that hurt; really hurt. I am still climbing out of this emotional wreckage, let alone the physical wreckage that is my now weird body. But I am--today, in this moment--trying to focus on the constructive effects in my life: the ways in which I am changed for the better. I am lucky to be able to do that right now, and perhaps tomorrow will not even look quite as bright. But life won’t stop being hard after this is over. Challenges will always arise, and life will seep down to the bare mundane tasks if I let it. I need to keep finding ways to live and love better. I have to trust that time heals, that days will go by, and that I have a thousand choices in each one of them. 

To the girl in the waiting room: thank you for saying that to me.

And to the other girl in the waiting room: you did it. One year down. One hundred more to go.

Day 362: I'll have the Year, with a side of Terror please

This Friday marks one year since I lay in a feeble haze in the white box of doom and watched a cup and a half of red stem cells drip into my body. I feel that this anniversary should be a triumphant one; where I raise and wave my cancer-free flag, celebrating all of the accomplishments of this past year.

But to tell you the truth, I do not feel triumphant. I do not feel victorious. I don't feel brave. I feel like dissolving and disappearing forever. I thought I would feel different than this. But so many hard things have happened, some things that I can’t even write about. I try to reflect on this past year and honestly, it just really depresses me. The negative are overpowering the good right now. I’ve even tried making a list of the things I have accomplished. It’s not really helping.

Anniversaries are strange. They are a day like any other, going by. But they hold something else inside them—expectations, desires, longings. In some ways it feels like the day should be able to pass without a huge hullabaloo about it. But I feel it creeping closer, and I feel the weight of everything that this anniversary holds: this year, everything I have somehow endured, the physical battle and the emotional duress, the things I have lost... It doesn’t feel positive. I don’t feel like celebrating. This date represents and holds inside of it this entire year, and it’s really heavy.

I probably should try to not pour all of this year into a single day; but that seems hard too. I want to be the person I was—joyful, bursting to see the sun, dancing in my hospital gown. That part of me feels spent, used up. The world looks different. I feel like Life showed me its really grueling shit and I’m having a hard time loving it afterward. I don’t feel a mantra or a life lesson. Except that life actually tears people down. And it’s really hard to find a way to get back up. I’m really trying. I am really searching for things that make me feel alive again. I’ve been thinking about Self Care and trying to figure out the tools I can use to make myself happier. I make lists. I go for walks. I try to schedule things and time with people. I got a job that starts in a few weeks. I’m trying to do theatre. I bake a lot. I clean the house a lot.  I’m pickling and canning. I’m working on planning a workshop for DFCI. I’ve started doing more embroidery things, though my hands still don’t always function properly with those fine motor skills.

I’m trying to believe that I am still in process. It’s hard when now I’m getting back into the world, and people expect me to be like, “back” from cancer as if it was some horrible vacation and it’s over now. It’s not over. It’s not over. I feel the effects of cancer in a new way now than I did before, when I was just trying to not die. It’s not just a little blip of life that I missed. The world changed while I was in quarantine. Of course it did, I missed an ENTIRE YEAR. Everyone had babies. And that’s absolutely fabulous. I’m really psyched to be meeting all of the babies. It’s just one more thing that shifted and moved on while I was “away”. But I wasn’t off having an experience in another country or choosing the monastic life. I was literally in Salem MA this whole time, in my little apartment. For an entire year.

I feel robbed. And I don’t feel okay about it. I’m angry. Really, really angry in a way that I wasn’t before, even when I got diagnosed. Back then it was survival mode and I was like “I’m gonna get this shit done, BRB” and later it was such a physical challenge I didn’t have much time for anything else--and maybe I deal better with physical pain. Or maybe it has just worn me down to this place where I can’t seem to find the joy that I had. I just feel angry. And really sad.

I don’t know what to do. All I can seem to muster is to try and take stock every day individually. How do I feel, today? I am feeling good, today. I am doing well, today. I am feeling lonely, today. I am empty, today. I am sad, today. I am angry, today. I am ok, today. I am here, today. I hope that enough days will go by and this thing, whatever the hell it is, will eventually lift.



I am suddenly reminded of Rilke's words. I haven't thought of this in a while, and it literally just came wafting into my mind.

Let everything happen to you: beauty and terror. Just keep going.

So this is terror. Okay. Just keep going.