Scan days are always filled with a dose of anxiety. I’ve had countless MRI scans over the past 11 years, and the angst has remained constant. I don’t have any problem with the MRI itself…in fact I have no problem falling asleep in the machine as I match the rhythms of the magnetic pulses to songs in my head. The moment I have the most trepidation is the few seconds right before the doctor tells me the results. My heart speeds up a few notches, noticeably raising and lowering my chest. Most times, calm returns when the doctor simply says, “the scan looks good,” or “we saw no change.” A few times, as I have written about before, the doctor delivers some bad news. In 2004, “we’ve found what looks to be a brain tumor”…in 2012, “there may be a slight enhancing abnormality, it’ll be safer to monitor it more frequently”…and this past November, “the tumor has grown back.” These moments, merely a few seconds, feel like an eternity when I replay them in my mind. I prepare myself for these moments by sorting through and accepting the potential worst-case scenarios.
Yesterday, when I went in for my MRI, I went through my same routine. I fell asleep to the thumping of the MRI machine, grabbed some lunch, went to Dana Farber’s nuero-oncology waiting room, had my vitals taken, and then went into the exam room to wait for the doctor. I sat in the exam room prepared for the various results I could receive from the MRI. I went in knowing we were not going to expect to see any noticeable change in the size of the tumor. Instead, this scan was focused on checking the degree of swelling as well as if the tumor had become more vascular (…meaning that it takes up blood, a sign of it evolving into a more aggressive form). Debra, my nurse, was the first to come into the exam room. My heart fluttered for a second, but when she told me they saw no swelling or vascular nature to the tumor, I relaxed a bit in my chair. I was relieved…everything was going as expected…I had some good news to report. What I didn’t expect nor prepare for was to hear more news about the MRI…more good news!
My nurse practitioner, Lisa, who fills in for Dr. Wen when he is not in town, came in next. After repeating what Debra told me, she pulled up the scans on the computer, and said, “it looks like the tumor has shrunk a little!” Thinking that I might have misheard her, I asked her to clarify what she meant. I knew this was a potential possibility down the road, but didn’t imagine we would see any noticeable change this soon. She told me she and the radiologist looked over the scans together, and both agreed there was a noticeable change. I was still in disbelief. I knew I was hearing fantastic news, but I was skeptical that it could be true. After so much bad news over the past 6 months, I was completely unprepared for something good like this to happen. I left the exam room a bit bewildered, deciding to be cautiously excited until I saw my radiation oncologist the next day at MGH, as if there must be some catch to what I had just heard.
Earlier today, I went into MGH for my appointment with Dr. Loeffler, my radiation oncologist. My goal was to first and foremost confirm whether or not what I had been told the day before was true. When I walked into the meeting room, Dr. Loeffler greeted me, saying, “congratulations! you were told the good news yesterday, right?” I immediately asked him if he agreed with the scan results, knowing how finicky MRI interpretations can be. He told me that the day before he had spent an hour pressing F5 to refresh his computer, waiting for the scan to show up. When it didn’t, he went off to a meeting, but when he returned, he looked through the scan, and was shocked to see that the margins of the tumor had shrunk to a degree that it was visible with the naked eye. He said that we were potentially hoping to see changes like this months if not a year down the road, but that it was surprising to see this amount of change so fast. And with that, I felt an overwhelming sense of joy as it all began to set in.
So what does this all mean in the bigger picture? Well, to start it is a clear sign that the proton treatment I went through, combined with the small doses of chemo had an effect on the tumor. And that is important! In my entire treatment plan, the radiation was the period I would receive the biggest bang for my buck in terms of treatment, and it looks like I received a big bang for my buck. It doesn’t mean I’m “cured” or that the uncertainty of my entire situation has dissipated. There is still tumor there, it can still keep growing, it is still going to be a long journey…but for the first time in 6 months, we are getting some control over this cancer, and that is definitely worth celebrating!
My treatment plan remains the same. Over the past 3 weeks, my blood platelet count dropped pretty significantly and leveled off at 70. The minimum most people want to be at is around 150. For those who don’t know, platelets are blood cells that help stop bleeding. Since mine were low, due to the lasting toxicity from my first round of chemo, I just had to be extra cautious around knives and making sure not to fall (a.k.a. no skydiving allowed). I’ve also felt a bit drowsy as well, but luckily my platelets are on their way back up. Once they get back up to 100, I can begin my long-term chemo treatments.
I will be taking the same oral chemotherapy, Temodar, that I took when doing proton therapy. This time, however, I’ll be taking about double the dose for a period of 5 days, with 23 days off for recovery. Depending on how I react to the treatment, we will continue these cycles for at least 6 months to potentially 1 year. I may feel nauseous and get fatigued, but that will all depend on how my body reacts to the treatment.
The goal of the chemo is to keep attacking the tumor cells, and prevent any additional growth. My doctors do not expect to see as much shrinking as we just saw from my radiation treatments, but I will get another MRI in 3 months, and if the scan comes back showing no growth, I’ll be happy!
It’s a long journey ahead, but as spring emerges and the flowers and trees begin to blossom, I can’t help but feel that things are looking bright.
P.S. HAPPY EARTH DAY!!! How lovely it is to have such great news on one of my favorite days of the year!