I can’t believe how long it has been since I’ve posted… except that I totally do too. Maybe what I mean to kick this off with is that time has flown by.
The last real post (since the one before this was more rant-driven) was actually all the way back in early December 2018, and here we are at the start of June 2019!
A lot has changed during that time. I’ve held my breath. I’ve sighed with relief and frustration. I’ve cried about everything – the good and the bad. I’ve been freighted. I’ve been excited. You feel the whole range out there when you’re recovering from chemo, waiting on PET scans, learning to use your body again, going back to work, planning a wedding, making up for missed travels, leaving work, and learning about what ‘normal’ is going to be here on out.
My prior posts also took a LOT of time to write than I ever expected so maybe I was a little intimidated to sit down and do the next. If we’ve spoken, then you know that I’m not a good storyteller. It’s something I’ve really had to work on at work and to keep J’s attention when I speak 🙂 My stream of consciousness is not typically coherent enough to write something, read it over, and post – ESPECIALLY with chemo brain and neuropathy. I also poured a lot of my heart into what I was writing to be helpful, clear, or therapeutic for myself, and that took a lot of effort to be purposeful with my words. I hope with future posts I’m more succinct, better at writing, or just less picky so that I can encourage myself to post more often.
If we haven’t talked or you haven’t seen my instagram posts, then spoiler alert…. I’m in remission! I finished chemo on October 8, 2018. I was told to wait 10-12 weeks to avoid any potential false positive readings since the chest typically scars and shows a lot of inflammation after being attacked by my chemo. I got a scan the first week of 2019, and it was good and technically qualified as remission with my care team. I was still left wondering though, and the next test was going to be a CT scan in 6 more months. I was told the write up in my results was debated since my Oncologists and Radiology to decide if “remaining lymphoma” would remain mentioned in the report because of the uptake level of the scans. Everyone settled on the remission conclusion, but it still ate away at me over the next weeks to say the least. I thought of it every day. I noticed every possible different feeling in my neck or chest and wondered if it was the tumor growing bigger again. I cried at anything sad or extremely sweet and then I got stressed because I knew stressing wouldn’t help recovery at all. If someone went deeper than asking how I was doing and what the next steps were, then I probably had tears in my eyes. The fear of my middle of the road results tipping in the wrong direction during the 6 months until my next scan was overwhelming and can be summed up by the word purgatory. In my PMBCL fb group there were SO many cases where radiation or other measures were prescribed, and when our cancer comes back, it’s still aggressive. If I was in that category, I wanted to know asap.
Eventually I needed to do something for myself. I reached out to the doctor at NIH, whom had done the larger studies of DA-EPOCH-R, to see what his next steps typically were with my results. He reiterated that the entire point of the regimen is to not use radiation and said something similar to my doctors: my case is consistent with inflammation/thymic rebound. Then he mentioned that they would typically “repeat the (PET) scan in 6 weeks or so to confirm but over 95% of patients with your findings are cured with DA-EPOCH-R alone.” You better believe I shared that second opinion with my team immediately, and we all agreed on another PET scan 3 months after the January 2019 one since insurance usually won’t cover 2 within a shorter time frame than that. A BIG RELIEF to have that in place. Did it take me out of purgatory? Hell no! Those 3 months were hard, and in a completely different way than the lead up to January. I can do a whole other post on the torture of waiting (aka scanxiety) it’s so engulfing.
Flash forward past fighting my disability insurance provider, starting back up at work part time, diving into wedding planning (yay!), and many travels, and I got a darker PET scan in April! Of course I’d wished for pure blackness on my colored scan (learn about PET scan readings here) but this day was a giant weight lifted off of my shoulders and my mind. I still get the thoughts about my neck and chest pains and nightmare scenarios, but far less frequent now. I now switch over to to blood tests every quarter at the clinic and CT scans every 6 months, or as needed.
I’ve worked on rehabilitating my body and my mind. Almost 8 months out of chemo and my body is significantly stronger. Don’t take that for being in much better shape though… celebrating and just living has definitely offset some efforts in the gym. My mind feels like it may be taking a bit longer, but I think it makes sense. From the beginning I knew that once the focus changed from taking care of my physical being, that it would open up space for a lot of the pain and release of my mind. Yes I worked on being balanced during treatment and feeling all of the emotions, but I pulled myself out of the “wow this is really shitty” mindset pretty quickly so things didn’t compound. Thinking now back on last year, especially since I’ve now passed my hospital admittance anniversary (may 27) and diagnosis anniversary (June 1), I’ve finally gotten to acknowledge that it was fucking horrible and scary. I know what I was thinking and feeling those days and I just cry. No one should have to feel that fear.
More on all of this later since I want to spend a reasonable amount of time on this post so I keep ’em coming. But yeah… this is me now. I’m done with the hardest stuff, but there’s a lot that is still here and still to come. It’s outweighed though by gratitude and a whole new perspective that I’m very excited about. Cancer isn’t a part of me going forward, but it has changed me forever.