I remember the first time I said the word “Rhabdomyosarcoma.” It was slow, broken and more of a question- the way you use an unfamiliar word in an attempt to understand it as it comes out. I was on the phone with my OB, one of the doctors in my practice who had helped in the process of getting Elena diagnosed. He corrected my pronunciation. I felt so unimaginably overwhelmed in that moment.
I remember Elena’s first day in clinic. I felt silly during the check in process and didn’t know where to go or what to expect. I sat next to two women who had a baby girl with them, not even a year old. They casually asked how long we’ve been coming to CHOP and when I responded that it was our first day, the older woman shed a tear and asked if she could hug me. She told me her granddaughter’s story of diagnosis, treatment and remission. That was the first time I felt hope since hearing of Elena’s cancer.
I remember Elena’s first chemo. We moved it up a day because her vaginal tumor had protruded. You probably just cringed. Or threw up a little in your mouth. To say it was God awful would be an understatement but I won’t elaborate more on this, as it is graphic.
We checked in at clinic and had to wait in the day hospital for a room to open on the inpatient unit. We waited and waited, and it was evening before we were upstairs. The doctors ordered an ultrasound, I suppose to get up to date measurements pre-chemo. The ultrasound tech seemed baffled by the lack of imagining on the screen. I asked she had her phone on her. She confusingly said yes. “If you need an image of the tumor for her records, open her diaper and take a picture of it as it is now more external than internal.” That was rude of me, I know. But it was the truth, I had just stopped caring about my manners given the circumstances.
I remember getting through the night and being surprised over her not getting sick. And then the nurse tried to give her anti constipation medicine and she threw up everywhere. “That’s a Colace puke. Doesn’t even count as a chemo puke!” I was dumbfounded how she could nonchalantly classify my daughters first vomit of her life, especially in this situation, as simply and unsignificantly as she did.
I remember the countdown of when hair loss would start and the first strands that fell. I sat with Elena on my lap for over an hour, just rubbing my cheek along the top of her head. I smelled her hair, taking it in, not knowing when she’d have it again. I wanted to savor it. And as each silent tear ran down my face and into her hair, I breathed it in deeper and deeper.
I remember, shortly after we shaved the remainder of her hair off, once all the spotty stubble had fallen out too, doing the same thing, noting how foreign it felt. I put my lips to her bald head and thought about how strange it was that at 20 months old my lips had never touched her head. Her hair, frequently, but not the skin beneath it.
I remember a million other moments, many of them less heart wrenching than the above mentioned memories. Including the feeling of normalcy on her last day of chemo. I don’t know why I expected something grand-balloons and applause and- oh I don’t know a marching band playing as we left, the nurses lined up down the hallway beaming at us with tears in our eyes. But it wasn’t that. It was just us, the last family leaving the day hospital, like any other VAC day. I noted this feeling to Mario on the drive home, and not two minutes later, the biggest and brightest shooting star I had ever seen flew across the sky. Appropriate, as that had been my wish for 10 months, and way better than a marching band!
So why am I taking this somber trip down memory lane at 3am? I scheduled Elena’s first follow up MRI/CT scan for September 1st, with a visit to the clinic on the 4th for a check up with her oncologist. In some ways, those words feel foreign again. But then those memories come flooding back and I’m living them like they were yesterday.
My hope for this visit? Obviously clear and healthy scans. To keep Elena happy and content as we wait for sedation and to have her recover as she always has afterwards. I’m surprisingly looking forward to seeing the nurses and her doctor. These people were literally lifesavers for Elena, and mentally and emotionally for me and I can’t wait for them to see how she’s grown and changed, how much her hair has started to come back.
In just a couple weeks we will be able to put her first post treatment scans behind us. Though, until then, I have a feeling it will be many late night trips down Cancer Lane.