Today I ran away. I was too upset to stay in one place, too scared to be still. So I ate my breakfast, pulled on my shoes and I ran away. Despite the bitter cold I was too hot to keep my hat on so I took it off and then I was bald. I was bald and I was sobbing and I was running. I braced myself to be seen this way in my crowded neighborhood the same way I have braced myself a thousand times a day since my diagnosis four months ago. I steeled myself against the stares. I am bald because I have cancer. I am sobbing because I am scared. I am running because I literally do not know else to do.
I didn’t know I could run. Four months of chemo and I haven’t run a single step since it began. But as soon as my feet hit the ground I know I can do it. I have to hold myself back from running as fast as I can. This needs to be a steady run. It’s part of a steady battle. I know that the pain will not come close to the pain I have endured so I am not afraid. I know this pain will be worth it.
Last night I was told that the other pain might not have been worth it. I got a call from my radiation oncologist. I met with her last week to talk about if I would need radiation. She said that my case was tricky. On the one hand my tumor was under 5 centimeters and it didn’t look like it was in my lymph nodes, the usual reasons for requiring radiation. On the other hand it was very aggressive and I was very young. We would wait for the results of my latest MRI and ultimately for the surgery to decide.
I too was anxiously awaiting the results of my latest MRI. The first one, taken before chemo began, had shown that the tumor was 4.7 centimeters. The second one, after just three weeks of chemo, had shown it had shrunk down to 4.1. We had done a happy dance confident in the fact that the poison was indeed poisonous. But since then we hadn’t noticed a difference. My medical oncologist reassured me it had shrunk. It’s there, though, just beneath my skin. I can easily feel it. I would know if it had gotten any smaller and it felt like it hadn’t. But I was holding out hope that I was wrong.
Then I get this call from my radiation oncologist. She had spoken to my medical oncologist. She began, “because the tumor is still 4.7…” My heart stopped. “No, no, no. You’ve got it wrong. It already shrank to 4.1 centimeters.” “No, your most recent MRI showed that it was 4.7.” I began to panic and started firing questions at her, questions she couldn’t really answer that well. The second MRI, the one that showed it shrank, was wrong, the angles were off, the contrast didn’t work. Sometimes MRIs don’t work. I wasn’t previously aware that I inhabited a world in which MRIs might not work and that my future could so easily hang in the balance of a wrong angle.
I hung up, stunned, for an infinite number of reasons. Stunned that this precious knowledge that I had carried around with me like a rare gemstone- it shrank to 4.1 centimeters… the chemo is working- was suddenly wrong. Stunned that my medical oncologist, who I had grown to respect and trust so deeply, hadn’t cared to share this information with me in the careful and respectful way I deserved, especially after months of conversations about how it was “definitely shrinking.” Stunned that a woman I had met only once had called me and shared knowledge with me that nearly broke me in two, almost as if in passing… “because it’s still 4.7 centimeters…” as if I had already known. Stunned that I had spent 12 long weeks holding my head up high through every infusion, through every shitty symptom, through every painful thing feeling secure in the knowledge that the chemo was working only to learn that I was wrong. Stunned by how utterly and completely helpless I was, how deeply I could wish for something with absolutely no way of making it so.
In a matter of moments the shock wore off and the emotions began coming, like great waves bearing down on me, through deep heavy sobs. I felt deep despair that the chemo had not made any difference. I felt betrayed that my medical oncologist, who I had been seeing for months, could not take one moment out of her day to make sure I was given this hard news the right way. I felt angry that I had spent 12 months going through all of that pain for what seemed like nothing. I felt terrified of this thing inside my body that could withstand even the most poisonous of poisons. How could I ever beat something that seemed so unbelievably stubborn, so immovable?
It’s a tough business ultimately accepting our helplessness in this life. It’s even harder when that helplessness is in the face of something life-threatening. My cancer friend and I joked about the other moments of helplessness that we would trade in if we could. Mine is about all of my airplanes always being late. Hers is about hanging Christmas lights.
Last night I cried until I grew deeply tired of it and went to bed. Then I woke up at 4 am still crying, as if sleep had just been a deep sigh in between sobs. Usually new and scary information takes a few days to sink in, and I slowly begin to feel better about it as I begin to accept it. I have cancer. I have to have chemo. I will lose all my hair. I will lose both my breasts. I will never breastfeed. I will have radiation. These are just some of the things I have had to learn how to welcome into the folds of my new reality. But this one, I can tell when I woke up this morning, really didn’t want to sink in. It was fresh, and tender and so painful I could hardly breath.
So I ran away. I removed my hat and allowed the world to take me in, sobbing, sweating, bald and running my ass off. I felt raw. I felt vulnerable. And while I was running I felt powerful in a world in which I have lost nearly all of my power.
[Additional info: Andrew spoke with my medical oncologist today and (after voicing our strong displeasure in the way this was handled) she was able to explain that her first goal for my chemo was to stop a very fast growing tumor from growing any more so she would still call the chemo a success even though the tumor has not shrunk at all. Her explanations for why they thought it had shrunk, why the MRI was wrong and why she failed to give us this news in the right way were not as helpful and not worth repeating. I also have 3 rounds of a different chemo drug, a double mastectomy and radiation still to go. So hopefully this is just a minor setback in an ultimately more successful battle.]