Wow, it has been a while. The last post was Christmas-themed and now spring is fully bloomed in all it’s shades of green and pink and pollen.
But it’s funny how seasons come and go and yet one thing remains – PET scans.
But before I get to that, let me catch you up with a brief history of the last two-ish years.
2019 – I reacted badly to my immunotherapy treatment, spent months on steroids with cancer still growing inside of me and my oncologist telling me that they didn’t have any more options for me at Hershey Med, so I should go see my doctor at PENN to see if they have any clinical trials that I qualify for. I do. He does. A two-year trial. Joe and I high-five at the prospect of two more years together and I sign the twenty-two-page, double sided, ten-point font, single spaced trial consent document.
2020 – On January 2, I officially start my new trial! It’s exciting and easy. Well, easy is a relative term I guess. It feels easy relative to the other treatments I’ve been through. I have to take 5 pills a day. Then there are the profilactic medications, you know, the ‘just-to-help-prevent-the-rare-pneumenitis-mentioned-three-quarters-of-the-way-down-on-page-13-of-the-consent-document’ pills. I take 6 pills a day now and 7 on Monday, Wednesday and Friday. Then my cholesterol goes up (side effect of the drugs I’m taking). Now I am taking 7 pills and a fish oil supplement. Then my white blood cell counts are not rebounding quickly enough. Now I am taking one fewer trial pill and a shot to boost my white count every Tuesday. For the first few months I have to go to Philly twice a month, then it is once a month until the world shuts down in March. Then it is once every other month with virtual visits in between. Another part of the protocol of the study is a PET scan every 4 months. So in April, August and December I go through the scanxiety process. Things are going well – I’m showing response by May! – until November. I am hospitalized for a kidney infection, then end up with a blood clot in my arm and by December I am in the hospital again with multiple small pulmonary emboli. Now I am on blood thinners! My pill count is up to 8 pills a day, for those of you still tracking.
2021 – It takes some time for my lungs to rebound from the clots and some of the tissue is gone forever. In April I have another PE scare – which ends up just being pneumonia – followed by another clear scan! The rest of the year follows this beautiful gift of a pattern. Normality. Clear scan. Normality. Clear scan. However, the end of my two years is drawing near. As the end creeps closer I realize the anxiety of the unknown future of cancer and the resulting treatment is so near the surface that if the busyness and noise of life ebb too much it becomes exposed as easily as the shore at low tide. My doctor briefly mentions receiving approval from the IRB for a third year for patients who are showing response to the trial. But he also mentions allogenic stem cell transplant, CAR-T therapy and other trial options after this one. I can’t bring myself to push him on the options because to ask is to acknowledge the end of these blessed two years of normality and health and response. To ask what’s next for me is to watch the tide roll out and and have to walk the soggy, shell covered shores of anxiety and fear. So I enjoy a monthly escape to Philly and enjoy catching up with my trial nurse and my doctor. I enjoy reporting that I’m feeling well and I enjoy even more when they show me the evidence that I am doing well – healthy blood counts and clean scans and good blood pressure and steady weight. I ignore the growing uncertainty and questions about the future. I’m an enneagram nine; ignoring anything uncomfortable or difficult that disrupts my peace is kind of my thing. But then at my appointment in November (my final appointment in the cycle of my trial), my doctor casually mentions distributing my trial meds and scheduling a scan for December and continuing as if this was always the expectation. I nod along in agreement as if, of course that’s what the plan is! It is so anti-climactic that I don’t even think to post an update or say anything more about it. Just like that, I’m into clinical trial bonus time.
Which brings me back to PET scans.
I had my nineteenth in April. There was the normal scanxiety of the day, but compounding that was the superstition that I didn’t realize had developed in me over the last two plus years. Every trip I have taken to Philadelphia has been perfect weather. Cold? Yes. Unbearable heat? Cloudy? Windy? Yes to all of it. But rain or snow? Never. It would be forecasted and then on the day of, it wouldn’t rain. What I didn’t realize is that all of this time, things were going so well and I had come to associate the two things in my mind. Well, this morning, the morning of PET scan nineteen, it was pouring. My sister traveled along with me to Philly for the day. We took the train and moseyed about the vast hall of the 30th Street station with all of its benches and people and refreshments while we waited on our Uber driver.
Debunking all superstition that had weaseled it’s way in to my heart and mind somehow, the day went perfectly. The logistics of the appointments went well and the results were even better. It was my best scan to date! We all high-fived (metaphorically) and my sister and I made our way back to the train station to wait for our 3:45 train home.
Once we took care of the important things, using the bathroom and deciding where to get our coffee, we wandered around again looking for an open spot on one of the 30 banks of benches in the main hall of the station to set up camp while we waited. We made our way around bomb-sniffing dogs and their police officers, luggage on wheels, shoe shine stations and finally found space for the two of us. We were sipping coffee and doing our best to conserve our phone batteries while we people watched. I noticed two of the police officers we had walked around earlier making their way around the benches behind us. They were each holding a small black device in their hand. I didn’t think a whole lot of it and went back to scrolling the news on my phone. Then I realized one of them was slowly making his way down our bank of benches. He stopped in front of my sister, looked down at the device in his hand, leaned down to her and said “excuse me ma’am, did you have a procedure done today?” I could see in her eyes that she was both trying to understand what he was asking her and why and that she was trying to not tell him to please back up. I then said “I did. I had a PET scan,” wondering immediately why I just offered that information to this stranger. He moved closer to me, looked again to the device he was holding and said to his partner on the other side of the bench, “It’s over here.” He very kindly told me he needed to see my ID and proof of my procedure. Was I shaking because I had too much coffee or because a Homeland Security Police Officer was asking me for ID, I wasn’t sure, but I moved as quickly as my jittery hands could manage. While I was retrieving my license he explained that the device he was holding detects radiation and it was detecting high levels of radiation coming from me. They thought I had a bomb. Actually, they thought I was the bomb. He documented what he needed to document and when he looked over my after-visit summary and saw the date of my next appointment, he kindly said, “well, see you again in May!” He was wrong. He saw me 45 minutes later on the train when his radiation detector tracked me again. I smiled and said “Just me again!”
I’ve always joked that I’ve had so many PET scans that I’m practically glowing. I never realized that I am literally a little ball of radiation after my scans. Don’t worry, after doing some research I learned that the radioactive isotopes they use for a PET scan usually all decay within 24-hours and in that time I am not emitting enough radiation to be harmful to anyone. Probably. Except maybe pregnant women.
I think I may throw a party for my twentieth scan in August – you’re all invited! You’ll need to provide your own hazmat suits though.
I’m just over here thanking Jesus for bonus time and humor in the most unlikely places.