Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
Once you or someone you love has been diagnosed with something big, the times between scans become sacred in-between times where you do your best to live in light of the ever-changing circumstances of your body. Sometimes that can be a time full of fear, but others it is a time full of hope.
I read an article recently in CURE about precision radiation for people who have metastatic cancer where random tumors pop up. I was heartened by the article, because that's what my mom has, and she has these little tumors that seemingly come out of nowhere and resist her chemotherapy that helps her maintain a healthy body by keeping all those cancer metastases at bay. (Here's the article).
I read it while I was nervously waiting to be called back from the waiting room for my MRI for my brain tumor. Yes, if you've been following my journey, this was the MRI I spent three months waiting for and wrote about in my last piece for CURE. I had waited a long time for the insurance approval of the MRI and in that time my anxiety had reached peak levels. When anxious, I busy my hands. I tend to read or play on my phone in waiting rooms; a lot of people I observed around me did that same to pass the time. I'm just not sure how many other people in the room were waiting for a brain scan while reading about tumor recurrences in metastatic breast cancer.
While the article I was reading about the radiation studies was hopeful on the whole, as I read it, I felt my cheeks go crimson and hot, and warm tears ran quickly down my face. My husband asked if I was OK. My anxiety is always matched by his, he mirrors me, his love always expressed through empathy. He squeezed my hand as I cried, and I looked at him and told him, "there's new studies that could help my mom." I was desperate to believe that science would undo all she'd been through. "Then why are you crying, if it's good news?"
Perhaps it was my own nerves, fraught and tense from the scene at the hospital and my impending MRI. But then, like a kid who can't stomach their secret any longer, I blurt out, "I don't want my mom to have cancer! And even when the statistics are good, they're always scary, and I can't, I just can't." I had reached the end of what I could carry that day, and it was barely 8 in the morning. Between the constant worry of living several states away from my mom to the pressure of an MRI that I'd fought hard to get, I felt like life was a little too heavy, and under the weight of it all I had to shed something — so I shed some tears.
Nevertheless, I wiped my face, leaned my head gently on the stable shoulder of my steadfast partner as he squeezed my hand tight, and then I sent the article to my dad with the text, "make sure mom's radiation oncologist knows this."
Pretty soon they called me back for my MRI. My husband waited patiently outside while I changed from my carefully curated outfit of high-waisted jeans and blazer into an over-sized pair of hospital gowns, one facing front, and one facing back. I took selfies in this outfit to send back to the waiting room, hoping to add some levity to the day. I waited to be positioned, poked and pushed into the big white tube where a restless nap awaited me. As I closed my eyes, I tried to stay still and make melodies out of the sounds of magnets whirring around my head. I realized that until the tech came out to inject me with contrast, and reminded me to breath, I'd been holding my breath on and off for the majority of the scan.
When they pulled me out of the tube, I couldn't feel the relief of my exhale and I still felt the tears perched precariously on the edges of my eyelids. My MRI results came back stable, I am so very grateful for that and for another year of progress through my disease. Maybe when Mom gets her pet scan next month that offers positive results, I'll finally exhale, put down the weight on my shoulders and stop having to shed so many tears.