Coping with Scans

— Categories: Ependymoma Community     Posted on August 5, 2019

Ependymoma survivor, Jennifer, shares how she copes with follow-up brain and spine scans and waiting for the results.

By Jennifer M.

As an ependymoma survivor and guest blogger, Jennifer shares her advice to help others within the ependymoma community cope with their illness.

I used to get scans of my brain every two months, back in 2009. I was fighting a recurrence of an ependymoma in the lower left side of my brain, the part that controls vision and speech. And I was happy during the first month, and miserable during the second. A scan would show no progression in the tumor, and I would rejoice, but only long enough to remember that I would shortly be back in the MRI. Then, I would wait to learn if the cancer was alive and well wreaking havoc in my brain. Those weeks sucked.

But I was lucky. My scans continued to show that the tumor was shrinking. Ultimately, it shrunk away so much that it’s no longer there. I have lingering partial blindness and difficulty finding words, mostly when I am tired. I read very slowly. These limitations are penalties, I joke, for being a lawyer, a profession I can no longer practice. 

Follow-up Scans

Full disclosure, I also get an MRI of my spine once a year. Ependymoma patients are always at risk, apparently, but I never worry. I attribute my calmness to my yoga teacher, who taught me that the key to a healthy life is a healthy spine. The annual 90-minute MRI of my spine has become the most relaxing 90 minutes of my year. It is truly the only place where no one can bother me. 

Because my brain continued to be stable, the frequency of my scans diminished, so now I only do them twice a year. And even though it’s been almost ten years of cancer-free scans, I worry. Sometimes only the week before, sometimes only when I am sitting there in the doctor’s office, wondering if the reason no one has come in to see me yet is because there is some great big honking tumor all inside my head, and the doctors are figuring out what to do before they come in to talk to me. So far, thank the Lord, when my doctor comes in to see me, they have consistently said, “Your scan looks fine.”

After the doctor gives me the good news, I go to the chapel in whichever hospital I am in and say Hail Mary’s until my knees hurt. I have a big glass of red wine, take a long nap, and I go back to the life that mine has become – my children, my husband, my part-time job, the laundry, the dishes, the weeding and the absolutely untrainable dog we rescued seven years ago – my cancer-free life for another six months.

Waiting for the Scan Results

It is actually my husband, Dylan, who helps me manage regular brain scans. (Don’t think for a minute they will ever stop scaring the bejeezus out of me.) I remember the moment I was waiting to find out if my tumor had recurred – it was in March of 2009. I had a scan on a Friday morning, and I knew I would not hear anything from my doctor until Monday afternoon, at the earliest. It was a long weekend. My daughters, Katie and Lily, were three and two. That Saturday morning, we had taken them to swimming lessons, as always, and we sat on our couch, hoping the girls would nap for a few hours. They never did. I looked at Dylan and said to him, “I can’t do this.”

He said, “You have to.” Dylan was right. I have to. My husband has to. All of us who are scheduling our lives around MRIs have to.

A note about my husband – he is total no-nonsense. He is a doctor, and I think that his medical training tends to kick in during medical moments – the first time we were on a plane together, I started to feel nauseous during landing, and Dylan just opened the air sickness bag in front of my face. I was not happy about the possibility of throwing up in front of him – ultimately, I did not – but I appreciated his composure. He was the same way when I was being treated for my recurrence. He loaded my iPod with my favorite songs for the hours I’d spend attached to an IV and then when I couldn’t swallow solids, he packed the fridge with Gatorade. I was lucky; Dylan was always there and he was always prepared.

Likewise, his approach to my impending scans was clinical. I had to get a brain MRI, and I had to wait for the results. It was a terrifying routine, but it did not have to be paralyzing. There was no reason to sit on the couch and worry when there were things to do. I had a life to live.

That Saturday, I created Cancer Free Days. That weekend, I refused to think about cancer, or scans, or doctors, or dying. I don’t remember exactly what I did – it probably involved laundry – what I didn’t let myself think about was cancer. I told myself “cancel” every time the thought of cancer crept into my mind. It helped me figuratively and literally, I believe. Those big old cancer cells heard my silent mantra and though twice about expanding further in my brain. 

Finding out the Scan Results

Of course, that Monday became a Cancer Worry day again. It sucked, but when my doctor called to tell me that the scan had shown improvement, I did my happy dance and declared a Cancer Free Week. 

Sitting in the little clinic room waiting for your doctor to come back in and tell you whether your cancer has returned is awful. It is worse than anything else I’ve had to wait for – bar exam results, tax returns, the next contraction. But I have to. It is all of those moments in between the scans – the moments that really matter. Those moments have added up to become my Cancer Free Life. Those moments make those God-awful moments of waiting for the results temporary. 

At one checkup, my neuro-oncologist asked me if there was ever a time when I didn't think about cancer. I told him, “No, I always think about cancer.” And he told me, "You need to stop worrying and move on with the rest of your life."  It was great advice - it was like he was giving me permission to stop worrying about cancer. I had a friend, a working mom, who used to say she put her guilt bag down. I put my cancer bag down, and everything got easier. 

In July, I will have my semi-annual brain MRI. I will say extra prayers and lay off the red wine, then I will go into the MRI and wait. I believe it will be OK, although I know there will always be a chance that it won’t. But no matter what the doctor tells me, I will get through it. 

I have to.  

Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates. View all newsletters