Cancer: an open letter.

I’ve felt exceptionally down this last week – physically and emotionally. It has been a number of things, but the culminating moment came on Monday morning.

A fun trip to Washington DC on Sunday, turned south quickly for me. I woke up feeling woozy and by the end of the day was leaning over a trash can on the National Mall throwing up like a midday drunk.

After not being able to hold anything down and not eating or drinking for 24 hours, I woke up Monday morning feeling equally as terrible. When you are a study subject, you have to notify your medical team about {almost} every physical ailment.. For example: “Hi, it’s Ashley. I have a pounding headache. May I take 2 Tylenol?”or “Hi, it’s Ashley again. My temperature is 99.4 – no other symptoms – what do you think?” So before calling my family doc to just make sure it wasn’t the flu or the coronavirus, I contacted my care team at Penn. They seemed nervous. They would call me back after talking it over. Five minutes later my nurse at Penn called back. “Hey Ashley, the doctor wants you to be seen here today at the Oncology Evaluation Center. He wants you to have some labs done and probably get a liter of fluids. Is there any way you can make it here?”

Let me give you an idea of what Monday looked like for me. Owen and Myra didn’t have school and had exhausted their one hour of screen time by 9:30am. Three of our girls were with us for the holiday break, the other nine would be returning from break between noon and 5pm. That meant signing kids in, talking to parents, checking bags, making dinner and catching up with each one of them about their weekends at home. On top of that, we had a brand new houseparent couple shadowing us for the day. It was 10:30am. Could I be in Philly {2 hours away} by the time the OEC closed at 3pm?

I went to work making phone calls. My parents graciously took our kids to lighten Joe’s load. My dad volunteered to travel with me, since I was probably a hazard traveling by myself. I called my supervisor and put in for a sick day. Then I booked the next train headed for Philly.

When I got there, I started with a chest x-ray. Procedure, they told me. It was the first time in a while that I got to put on a hospital gown. Good news – I still look awesome in them! Then I headed upstairs for all the tests – 2 blood cultures, 3 tubes of blood sent to the lab, urine test, swabs up my nose and down my throat and all successfully completed despite my super dehydrated state!

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I can’t say enough about Penn and the people there. They almost make you want to go to the hospital more often. They are empathetic and kind and patient. From the front desk to the radiology techs and phlebotomists to my clinical trial team, I always feel hopeful when I walk through the doors. While I was waiting to be seen by the nurse practitioner at the OEC, my trial nurse came down to see me and she stayed with me the whole time. My labs all looked good, so probably just a stomach bug they concluded and sent me off to the infusion room for a liter of fluids, promising that after patients get fluids, they perk up like a wilted plant that gets watered. They weren’t wrong. My dad and I left, grabbed some dinner at the train station and made the 6:55 train back home.

It was a whirlwind. A detour. An unplanned road block. I’m still feeling a bit sluggish and worn down because the rest of life doesn’t stand still for cancer. And it all got me thinking about a couple things. First, it made me realize that this clinical trial is no joke. If my white counts had been down, they were going to keep me overnight! Just for a stomach bug! The second thing I got thinking about is that I am coming up on my 12th PET scan (next Thursday) and almost 5 years of living with cancer. I was feeling a little down and anxious about all of that – the riskiness of my daily life as a clinical trial patient and the upcoming scan and well, just cancer – and I thought, there is nothing I can do to change my circumstances right now, so let’s find some joy in it all.

So I present to you, my open letter to cancer.