So it's been like - a whole month and a half since I've written. That's pretty amazing. Even now, it's hard for me to focus on writing. But I know if I don't ... I will "pop" as Mike describes it. So here goes - here's what's been happening.
There's this line that exists - between blissful ignorance and daunting knowledge. It's on this line that I live lately. Sometimes - most times - living on this line is anxiety provoking. You might as well name this line "Anxiety." (I hereby dub theeeeee anxietyyyyyy). I've never had an issue with anxiety until this year. I am one of the most even-keeled, steady personalities you will ever meet. I even list it on my resume as a "Key Strength." It's one thing that has always been reliable about me. I come to the table with a consistent personality, with few exceptions. It's one of the things I'm sure Mike loves about me too. We even talk about how we were expecting waaaaayyyyy worse from my personality post-ovary removal. Instead - it's been OK. Not very different. Which I'm (and my loved ones are haha) super thankful for.
So needless to say, I am weak in identifying what anxiety feels like in my body. For a few weeks around and after my last blog post, so late September, I was having a very consistent pain in my chest - same spot, each time, near the "mediastinum" area of my right lung where the scans noted activity. It would come and go throughout the day, but when it would come, it was enough to draw my focus to it and evoke verbal complaints. Add to this my last lab work showed a small increase in the CA27-29 tumor marker. Note - since we started monitoring this marker (Stanford never monitored this. My onc here does. They can be unreliable to a degree.) it has steadily decreased from 171 down to 80ish. The increase was up to 101. Combine this marker and the pain - I went in to see my doc. I was supposed to have a full 4 weeks without a doctor's appointment. It would have been the first time this year. Instead - I made it 2 weeks. I went in - but I was disappointed I didn't get the full 4 weeks off. I met with the nurse practitioner - she told me not to worry about the marker, that 20 points isn't a big deal and could very well be a calibration issue. "Hundreds of points" she says, in her Russian (I think?) accent, is a concern, not "this small change." She says she believes it's anxiety, but that she's willing to order a scan for me. I decline the scan. I want to trust her that it is anxiety and that I can get through this until my next PET. I go home. A few days later, I email her and ask for the scan. I couldn't do it. I needed to know because the pain was still there.
And this - right here - this is the line. This is the line that I try to walk every day. I try to figure out how I am supposed to balance on a knife's edge between knowing and not knowing and accepting and rejecting. It's no wonder I've now had at least 5 panic attacks this year when before I've only had one my entire life, which happened to have been during chemo in 2010.
So I go in for a CT of my chest. I get the radiologist's read later that same day. All looks good - no crazy, out of control, mass growing and compressing my lung, causing the pain. Of the two lung nodules, one is stable and consistent with the last scan, and the other is smaller. Great-freaking-news. I breathe. The radiologist also notes a slight thickening of my esophagus behind my sternum, but states it could be esophagitis. (I'll come back to this side-bar in a moment.) So - it's anxiety. But why?! We were at a point of freaking calm! We got past all those appointments with the neuro onc and we weren't supposed to come back for 4 weeks and scans were in 8 weeks. I started back to work and things were slowly getting on a rail. And then I talk with my friend and she tells me about "delayed stress response." Essentially, now that we were in a period of less-stress, my body was finally processing all the high-stress from before. There was finally room for it.
Two weeks after the CT, I was due to go in again for my monthly visit to the onc. We do labs. We meet with my onc. She goes through her regular set of questions - assessing my current status. All is well. I feel well. I'm not having the pain any more and I'm happy the CT was good. But then she goes into her guarded tone of voice and begins to discuss the CT results. She says the radiologist noted the thickening of my esophagus. Have I had any difficulty swallowing, have I noticed anything at all ... ?Shit. Seriously? I read that "esophagitis" and took it as such since everyone in the household has been battling a cold-bug thanks to school and daycare. Is it something I need to be concerned about? Fuck dude. But when she talks in her guarded tone of voice - it puts me on alert. I will rant for a moment however - because she has yet to go through my images with me - and I don't know that she looks at the PET or CT images herself at all and instead I think she just reads the radiologist's written report - and that irks me to an endless degree. End rant. However - a rant to say - I'm not sure whether or not to be on alert because it very well could be a cold as much as it could be something else.
And again - I'm there. On the knife edge - walking the line between thinking I knew what I knew about a "good" CT scan and not knowing "what else" might be there. It freaking sucks.
The appointment wraps up with her concluding we'll watch it and she orders my next interval PET CT scan for November. My neutrophil counts come back above 1 so I am good to start cycle 8 of Ibrance. A few days later I also get word that my CA27-29 marker is down to 60ish.
So here we are today - I'm back at work full-time and have been for a month and a half now. My next PET CT and brain MRI is scheduled for 11/11. The anxiety over the upcoming scans is already ramping up. I was full of worry about it the other day until Mike reminded me to enjoy the position we're in right now - enjoy not knowing for now. I try. I turn my nervous energy to other things - like essential oils and landscaping and researching house plants that can survive in a super sunny window with lots of direct sunlight. (FYI - peace lilies are NOT suitable for this location.) Oh and Nicholas came down with an ear infection, which has recently cleared with the help of antibiotics, only for us to find out at his follow-up appointment to make sure that his ears were clear, that he now has hand-foot-mouth disease, not to be confused with the livestock version of the virus. Yeah - I thought it was just a drool rash and diaper rash. Evidently it's crazy contagious so that has me freaking out as well. My hands are super dry from all the hand-washing trying to make sure I don't get sick. But thankfully his ears responded well, and the ear infection is gone.
So for the next week and a half, I will try to enjoy sitting on the knife-edge of where we're at today - between a good scan, a questionable spot and the weight of the next scan pressing down on us - while trying not to catch hand-foot-mouth and working full-time again and preparing for the holidays and Nicholas' first birthday. Oh and trying to teach Camden NOT to ask for EVERY toy that is advertised on TV.