April 2020
It’s been a long time since I’ve posted and updated everyone. In February my oncologist wanted me to see the Brain Tumor Team at MD Anderson for evaluation. They saw that in February my one brain tumor had increased slightly from previous scans but it was very minimal. The team wanted me to return in April for more scans. If there was any progression we would discuss different options including gamma knife radiation. Since February I’ve always had a backup plan in my head if we had to go down this route-what would change, what is the recovery, would there be any side effects or complications. So many unanswered questions. So many things were put on hold because of the “what if’s”.
Then the pandemic hit. Spring break turned into lockdown mode and uncertainty filled so many days. What would happen? Am I more vulnerable to the illness? Would we be able to make it and survive? In the midst of trying to maintain a sense of normalcy with the kids and homeschooling I still was thinking about the upcoming scans and what it would show.
While Houston and Austin were in lockdown mode I drove to Houston. I was very worried about being exposed and took extra precautions to not stop for food or anything unnecessary. My trip was solely to get scans and return home. A few days before my appointment, MDA called me and said they had moved my appointment to a diagnostic center in Katy instead of downtown. It was deemed safer, in addition my results would be told to me in a phone call instead of an in person visit. I arrived at the diagnostic center early. There was a table set up at the entrance with a nurse checking patients’ temperatures and if they had been around anyone who tested positive for COVID 19, or had any symptoms. There’s always a plan B, C, and D. Those who did not have a temperature and were deemed ok waited in a large waiting room that had several chairs and couches removed. There were 5 people waiting of different ages. One older woman in her 80s was in a wheelchair accompanied by another women, maybe a relative in her 50s. The younger woman rolled the wheelchair in, signed some forms and told the woman in the wheelchair that the nurse would call her when all tests had been completed. She was not able to stay with her. No one else but the patient was allowed. As I sat waiting everyone made eye contact with each other in a knowing way. We all knew why each of us were there for scans during a pandemic and it couldn’t wait. I hoped that even if the support wasn’t sitting right next to us in the waiting room that it would be there at the end of the day.
In January 2020 I had an allergic reaction to the contrast given during a CT scan. I had some reaction before but never had thought anything of it. But that time was different. The contrast was sent through my veins in an IV while I was having my CT scan, I immediately felt my tongue swell up and throat close. It lasted for a short time and I told the technician the symptoms. She also noted the hives that were started to appear on my neck, arms, and chest. Nurses rushed into the room and a doctor was called. I was given benadryl to stop the allergic reaction. The incident was recorded in my files and each time I go in for scans I now take preventative strong benadryl as well as an IV during the scans. Total cost for multiple rounds of extra strong benadryl-$600 to insurance.
The scans were done quickly and I was told that they would be examined by my team of oncologists–not just one and I would receive a phone call. The first phone call came as I was driving back to Austin on a nearly empty I-10 freeway in Katy from the Brain Tumor Team at MDA. They were determining if any changes had taken place to the one brain tumor identified in my right frontal lobe. If significant changes had happened then the next step would be to schedule a Gamma Knife Surgery. I had readied myself for either outcome, but still hoping that we could proceed with the surgery and get it over with. I wanted to be rid of it if that was an option. The scans showed no changes or progression from the prior scans in February. The oncologists wanted to continue to monitor over the coming months. A second phone an hour later from my Melanoma Oncologist who said he was very happy with the scans and lack of progression. He wanted to see me back the first week of July for a new set of scans. From there if things remained stable we would discuss moving the scans from every 3 months to every 6 months.
People ask me if I’m in remission. Is the cancer gone? For the past two years there is no remission or NED-No Evidence of Disease. There is no “gone”. In 2020 I still have one brain tumor that’s considered stable. Can it shrink on its’ own with the continued help of three rounds of immunotherapy I had in 2018? Yes. Can it grow and even multiply? Yes. That’s the unknown.
Some melanoma patients continue to receive immunotherapy infusions for years after tumors have stabilized or left their bodies. Due to the extreme side effects that I experienced with the three infusions in 2018 and the astonishing success it had in eradicating all the tumors in both lungs and a few brain tumors it was decided that I would stop treatments and continue to monitor for now. The level of toxicity of the infusions that I encountered had an enormous impact on my quality of life. Would I do it again, yes. It was a high price to pay but it saved my life. Will I need to go back on immunotherapy later down the road? Maybe, that’s unknown. A lot of things can happen and are possibilities. But it’s important to balance looking at long term possibilities with what’s happening right now. Where are we at in the present moment? The present moment brings another three months of stability and somewhat certainty.
Courageous Perseverance 