Last Wednesday, I had my first scanathon of the year. It was inconveniently smack dab in the middle of the week and I don’t think I quite realized how emotionally exhausting it was until it was over. I’ve been hanging on to the results because truthfully, I needed time to process everything.
As scan day drew closer, I found myself getting more restless and anxious. I was trying to distract myself, but that became increasingly more difficult as I got closer to the day. It didn’t help that I couldn’t exercise a few days prior to my scans. Apparently muscle inflammation can light up on a PET scan and I was extra cautious because I didn’t want any false alarms. When I was first diagnosed I was convinced spin classes were the reason my legs lit up! This time around, I didn’t have a physical outlet for my nervous energy. I actually took out my bad word coloring book to try to lighten the mood and distract my brain for a bit.
I spent the better part of Wednesday at Mayo inside big fancy machines. When scans were over, I enjoyed a nice Ativan-induced nap. Those are always my favorite parts about scanathons! I woke up from my nap, colored some more and just waited. I’m fortunate that my results come in fairly quickly, but the waiting truly is awful. I sent a message to my medical team a few days prior so they’d remember to take a peek at the results as soon as they were ready. Scan results would be in my portal within 36 hours which seems like a very short period of time, but it’s SO LONG when you’re waiting for news like that. I was half-expecting a phone call from my doctor because I was trying to prepare myself for unfavorable news. I nervously carried my phone everywhere and constantly checked my messages in my portal like I had some sort of OCD. At about 12:30 on Thursday, I saw the a “new message” notification in my portal. I had the biggest pit in my stomach and genuinely thought I was going to throw up. After fighting my internet connection, I opened it up and it said…
“Renee has reviewed your scans. The PET scan is negative and the MRI is stable.”
OH THANK GOODNESS. I had a huge sigh of relief. But then I quickly realized she said “MRI” and I had both a cardiac and brain MRI. What if she didn’t review both and maybe my Neuro-Oncologist was calling me with the news about my brain MRI? I frantically emailed my other doctor. I went from sheer happiness to nervousness within seconds. About 4 hours later, I got another message in my portal…
“No new areas of enhancement – everything is stable.”
3/3 SCANS WERE ALL CLEAR. My first scans as part of post-treatment were clean and NED is still my BFF. Halle-freaking-lujah.
But, then Friday hit and I was emotional as f*ck. I got frustrated about my taxes, frustrated about work, and I started crying for no real reason. Thank goodness I had an appointment with my therapist, because I was having an awful day. I realized that I had held it together all week long and I was emotionally incapable of holding it together any longer. My therapist described it to me as like a glass of water. Over the course of the week, my water level had raised with all the nervousness and anxiety associated with my scans but somehow I kept all the water in the glass. But I failed to decompress and drain some of that water and it was now uncontrollably overflowing. My bad day was completely justified – I was emotionally exhausted. I think people expected me to be excited and happy with my results, but the reality was I hadn’t even processed it yet.
Recognizing that this 3-month cycle is going to be my normal for the next 2-3 years, my therapist recommended reflecting and mapping out the things that helped me this week, and what I’d like to change for the next round. As much as I want to move on from last week, I think this is a necessary step to take in order to do so. This brings me to… a “Dear Future Self” of sorts to try to help me be more prepared when the next scanathon rolls around. This exercise is for me, but you’re more than welcome to read it, too 😉
Dear Future Self,
Your next round of scans are already right around the corner. You know what to expect, but that doesn’t mean you’ll feel any less pressure or anxiety. The further away you get from treatment, the more nervous you’ll likely be. It’s okay! Here’s what you learned from your last round.
Make sure you find new things to do, or new places to explore leading up to the next scan. Unintentionally, you started a 30-day trial of a yoga studio a couple of weeks before scans. So, leading up to scans you were trying all these new classes and you didn’t realize how beneficial it was! Remember how focused you were each class trying to figure out what the heck you were was supposed to be doing? It forced you to be present and that was awesome. Hopefully you continued doing yoga and you can finally touch your toes 😉
Refill that Ativan prescription. You’ll need it.
Talk to the scheduling team and see if you can schedule the scans on a different day. The middle of the week was maybe more disruptive than necessary.
Think twice about publicizing your next scan date. You didn’t realize how much pressure it added to the day when you advertised it to everyone. Maybe be a little more discrete next time 😉
Take time to process the results and don’t rush back into the routine of things. It’s a lot to handle mentally. Be patient with yourself.
Remember that scans are a measurement of a moment in time, they are not indicative of the end result. An unfavorable scan result does not mean you won’t respond to treatment again.
Continue to lean on Dan and your family for support. They are some of the best people on the planet and they provide SO much strength. Remember that adorable card Dan gave you in the car on the way to Mayo for scans? He promised he’d be there every step of the way – let him!
Remember your track record. Your last round was super positive!
Hey Future self, remember, YOU FREAKING GOT THIS.