Should we start with the good news or bad news first?
2020 has essentially felt like nothing but bad news, so let’s start with the good.
Today was my 14th PET scan – my third in the last six months. I think at this point I’m beginning to give off a subtle radioactive glow.
On scan days, I start in radiology. I go through the scan (fasting, IV, radioactive glucose, barium contrast smoothie, sitting for an hour while that all cycles through my body, scan) and then I head upstairs for the most important part – eating…I mean, seeing my doctor. By the time I see my oncologist, a radiologist has read and interpreted my images, compared them to past images and written up a full report of his or her findings. My oncologist will then break it down for me in a way I can more easily understand.
In May, I had PET scan number 13 almost 5 years to the day of my original diagnosis. Some of you may remember that after that scan, my oncologist told me that judging by the images, he would consider me in complete response, although the radiologist’s report indicated there was still a small measure of disease. It felt so hopeful.
Ok, the good news: The radiologist’s report today – and I quote – said that I am showing “complete metabolic response.” In other words, there are no signs of cancer in response to the treatment I am on.
Are you smiling from ear-to-ear? Are your eyes filling with tears? Maybe you let out a squeal of excitement. Was there jumping up and down, lots of exclamation points and shouts of “Praise Jesus!”?
Those are all appropriate responses to that good news!
Here is the bad news: I am struggling to respond that way. I am struggling to celebrate.
If you have known me for any period of time or have been following my blog, you will know that this is not the first ‘R’ word I have heard.
Here is a brief history of ‘R’ words:
- In 2015, after 6 months of intense chemotherapy, I walked out of the infusion room and rang the chemo bell! I was done. I was in remission. I still cannot watch the video of that moment today.
- A year and 3 months later, I heard the other ‘R’ word – relapse. That time, it took 7 months, 2 rounds of inpatient chemo, a week of high dose chemo and a stem cell transplant before I was told for the second time that I was showing complete response.
- That time my response lasted for only 7 months.
In December, when my oncologist at Penn told me about the clinical trial I am currently in, I was at a low point. A year and a half of immunotherapy treatments had wrecked me physically and I wasn’t sure there were any viable treatment options left. Shake that up with losing one of my oldest and dearest friends to cancer and you had yourself a cocktail of utter brokenness.
At that appointment last December, as I poured over the 22-page consent form, riddled with medical jargon and warnings about potential side effects, my oncologist was very up front with me. He told me I would be a great candidate for this study but that he wasn’t necessarily anticipating that I would show a full response. He also made it clear that this was a placeholder treatment while something more effective for long-term remission or cure was being developed.
So, on January 2, 2020, when I dove headfirst into this clinical trial, committing the next two years to more daily medications than most patients in a nursing home and enough PET scans to have me glowing in the dark, I just hoped that it would keep the cancer from growing long enough for a new treatment to be developed. It was never expected that it would be the end all of my cancer treatment – and it most likely will not be.
This is why it’s complicated, and I just needed you to know.
Thank you for your excitement and for your encouragement and for your tears of joy. I am grateful beyond words for good news today, but I cannot deny the heaviness I feel pulling at my heart.
At one of my scans a year or more ago, Joe was going in to hear the results with me and had this mantra running through his head – hopes high, expectations low. What that really means is, he didn’t want to get thrown back down to the ground again in this fight with cancer, so he was preparing for the worst. I said to him in that moment, “I need you to hope with me.” When I expressed my emotions to him tonight on the train ride home, he said those words right back to me.
So, tonight, I am choosing to celebrate. I am choosing to hope.