I’m trying not to borrow trouble. But I’ll readily admit, it’s pretty hard right now,.
I hit the wall with chemo – it’s breaking me mentally and the building toxicity from continued treatments is making recovery harder each time.
I had a CT scan on 5/24 that showed no growth or shrinkage of the tumors on my liver. My CEA had been going up incrementally but overall, my oncologist was happy with the scan. We(I) decided that it’s time to let up the gas on the treatment since I’m having such a bad mental and physical time with it and that I’ll drop down to just 1 of the chemo drugs – 5FU. I’ll continue to take it as a 46 hour drip instead of trying the daily pill form which has its own side effects. I feel it’s a devil you know versus the devil you don’t know situation so I’m sticking with the devil I know.
So I’ve been traveling and seeing friends/family a lot since being fully vaccinated. I’ve been to LA, NOLA, Vegas and Chicago. Friends and family are slowly trickling in to visit in the time between. I’m not sure if my disease will allow me to fully realize the plans I have but I’ve got a lot more on the horizon. Missoula, VT, a midwest/southern US road trip through KS, AR, AL, GA and TN, a week in Spain, a trip to SF, a southwest roadtrip that would take me through NM, AZ, CA, NV and UT. Crossing my fingers that I get to most/all of these trips that would take me through November. I’m really trying to get in as much living as I can while I’m still alive and as far as it goes, I think I’m crushing it.
But yesterday I had some pretty shit news. My CEA(cancer protein) levels more than doubled in the 3 weeks since I’d last had treatments – from 29 on 5/10 to 76.7 on 6/1. And the last treatment was with both chemo drugs I’d been taking, I hadn’t even dropped down to the one yet.
I had a meeting with my surgeon who performed my colon and liver resections – I’d wanted to meet with him after deciding I was slowing down my chemo and that I’ve been seriously considering halting treatment altogether. He didn’t like the CEA jump but also wasn’t able to fully interpret my last CT scan. We agreed that a PET scan(a CT scan where they pump you with sugars to get a clearer picture of where the active cancer is) could help him and the Interventional Radiology team decide if/what physical intervention we could consider to kill the most active of my tumors.
So for now, I have a PET scan this Friday and a follow up with the surgeon next Thursday. I’m also going to schedule an appointment with my oncologist for after the surgeon consult, in case there’s no physical intervention to be had so that we can decide next steps.
Again, not to borrow trouble but I’m definitely facing my mortality over here. Lots of crying and attempts at being at peace with my reality. I feel like my time here may be coming to an end sooner than I anticipated and it’s a lot to grasp and come to terms with. I really don’t want to die. But I’m really not having a good time with treatment which is questionably working. There are literally no good choices in this completely untenable situation I find myself in.
I’ll keep you all updated in the near future about what those next steps are. Please continue to keep me in your minds, prayers and thoughts as much as you can. I truly appreciate it and it helps me get through these tough days.
Also, RIP Cosmo, Emily’s puppy of 13.5 years who we lost last week and was the bestest good boy there ever was. You are terribly missed.