Your scan is clear
"Your scan is clear." That's how the hematologist-oncologist presented the news before we were even able to sit down in his office. Just like ripping a band-aid off, yanking the tension out of the air before carrying on with conversation. Dane lit up and I essentially went into standby mode. The doctor went on: no activity to be found on the PET scan, Deauville score 1, full metabolic remission.
There was already tentative evidence of a good response to the chemo - my twin turned squishy and I no longer had any alcohol pain or itching. At the same time, my doctors had made clear time and time again that a bad interim scan isn't the end of the world: there are several alternative treatment options that, while heavier on the body, have similar success rates. I balanced these two ideas in the week between the PET scan and the doctor's appointment to prepare myself for any outcome as I tried to focus on recovering from the latest chemo treatment as opposed to something far out of my control.
"We recommend moving on to radiation." At this point, I went from standby into power off. I always thought hearing the news that you're in remission is the best news anyone could ever hear, but I hardly felt relief. Instead, my brain just went on its own ride, far from the conversation at hand. Radiation, isn't that too dangerous? Did I already have my last chemo? But I didn't say goodbye to the nurses, there was no celebration! What do I do about my hair? What about work? It's already time to start thinking about re-integration! Why don't I feel happy? Is my response weird?!
Now, this is a case-in-point of why a +1 is so important in appointments like this. First, and most importantly, as an extra brain to take in all the information when my brain's overwhelmed with other thoughts. And second, to take some weight off my shoulders. Dane immediately simply mentioned 'it always takes her some time to let it sink in' and then went further to explain that this is new to us, we had all but excluded radiation from the list of possibilities. The doctor was patient, walked us through the reasoning and even called our radiation oncologist to confirm with her the same analysis. After 45 minutes or so of discussion, we both felt satisfied and confident.
The whirlwind concluded in me heading up to the day treatment room to get my PICC line removed. My feeling's started shifting to relief and gratitude as the nurse kept pressure on the small, fresh wound left behind. She was nearly crying happy tears with me. It certainly had an air of closure to it and the fresh air for my itchy, dry skin brought some unambiguous relief.
My ambivalence to the scan results caught me off guard, but I know it's not unique to me. I had read about such feelings from other lymphoma patients on Reddit but found it pretty incomprehensible. I spent the first few days between happiness and apathy. I guess it's just difficult to feel pure happiness about such good news when you're still essentially in the thick of the battle. Just because the cancer's gone, there may still be some active cells lurking below the scan's radar. I still need to have radiation and accept the associated risks to ensure the best outcome. On top of that, I've spent the past months living day-to-day. Not to say that chemotherapy was nice in any way, but I was getting into a sort of routine and that included focusing on the present, which helps deal with all the surrounding uncertainty. Suddenly, reality beyond my own little bubble came barreling in.
This all isn't to say that I'm not also happy with the news. We've had several nights of (quarantine-appropriate) celebrations including a balcony BBQ and lots of champagne. Seeing other people's relief and elation with the news has also been particularly touching. I'm not out of the woods yet, but there's a growing light at the end of the tunnel.
There was already tentative evidence of a good response to the chemo - my twin turned squishy and I no longer had any alcohol pain or itching. At the same time, my doctors had made clear time and time again that a bad interim scan isn't the end of the world: there are several alternative treatment options that, while heavier on the body, have similar success rates. I balanced these two ideas in the week between the PET scan and the doctor's appointment to prepare myself for any outcome as I tried to focus on recovering from the latest chemo treatment as opposed to something far out of my control.
"We recommend moving on to radiation." At this point, I went from standby into power off. I always thought hearing the news that you're in remission is the best news anyone could ever hear, but I hardly felt relief. Instead, my brain just went on its own ride, far from the conversation at hand. Radiation, isn't that too dangerous? Did I already have my last chemo? But I didn't say goodbye to the nurses, there was no celebration! What do I do about my hair? What about work? It's already time to start thinking about re-integration! Why don't I feel happy? Is my response weird?!
Now, this is a case-in-point of why a +1 is so important in appointments like this. First, and most importantly, as an extra brain to take in all the information when my brain's overwhelmed with other thoughts. And second, to take some weight off my shoulders. Dane immediately simply mentioned 'it always takes her some time to let it sink in' and then went further to explain that this is new to us, we had all but excluded radiation from the list of possibilities. The doctor was patient, walked us through the reasoning and even called our radiation oncologist to confirm with her the same analysis. After 45 minutes or so of discussion, we both felt satisfied and confident.
The whirlwind concluded in me heading up to the day treatment room to get my PICC line removed. My feeling's started shifting to relief and gratitude as the nurse kept pressure on the small, fresh wound left behind. She was nearly crying happy tears with me. It certainly had an air of closure to it and the fresh air for my itchy, dry skin brought some unambiguous relief.
My ambivalence to the scan results caught me off guard, but I know it's not unique to me. I had read about such feelings from other lymphoma patients on Reddit but found it pretty incomprehensible. I spent the first few days between happiness and apathy. I guess it's just difficult to feel pure happiness about such good news when you're still essentially in the thick of the battle. Just because the cancer's gone, there may still be some active cells lurking below the scan's radar. I still need to have radiation and accept the associated risks to ensure the best outcome. On top of that, I've spent the past months living day-to-day. Not to say that chemotherapy was nice in any way, but I was getting into a sort of routine and that included focusing on the present, which helps deal with all the surrounding uncertainty. Suddenly, reality beyond my own little bubble came barreling in.
This all isn't to say that I'm not also happy with the news. We've had several nights of (quarantine-appropriate) celebrations including a balcony BBQ and lots of champagne. Seeing other people's relief and elation with the news has also been particularly touching. I'm not out of the woods yet, but there's a growing light at the end of the tunnel.
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| Cheers to good health! |
We are so proud of you both and are continuously inspired by your strength.
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