Two-Week Countdown

In two weeks, I’m scheduled to have a PET scan — which will hopefully show that I’m cancer-free.  It’s really scary to think about that day. 

If I am deemed to be cancer-free, the clock starts for the next test in 3 more months. I’ll have a PET scan every 3 months for a year, then every 4 months for the next year, then every 6 months, then annually. Right now, it seems daunting.

I am having a few issues, which as all my doctors say are “to be expected”. The good news is that they have solutions for the expected. My jaw is sore and my mouth doesn’t open very wide (to be expected), but there are exercises and a device called a Therabite, like your kid’s orthodontic expander, but it will expand my mouth open. My hearing was negatively impacted (to be expected), so I just got my hearing aids adjusted. I have lymphedema (to be expected), and I’ll soon get a Flexitouch Plus intermittent pneumatic compression device, a long name for a vest and headgear with a pump to move my lymphatic fluids around and reduce the swelling in my face and neck. I was still losing weight (to be expected), but Ben and Jerry’s has lots of flavors. But I can’t really taste them (to be expected).

Other things are getting better – I am golfing a couple of time a week, and really enjoying it. I went to the dentist and they actually had to suction saliva!  (The fact that I have any saliva at all for them to suck is really good.) My weight has finally stabilized, and we’re figuring out what foods I can successfully eat, even if I can’t taste everything. On the non-cancer front, we’ve both gotten the Covid vaccine, providing some light at the end of this long pandemic tunnel.

A few weeks ago, I wrote this next part. It was a down day, and I thought I would come back and read it it and decide what to do. Seems like it should be posted, but I added some updates in brackets [ ]. Everything else I left as it was. Even now, some days are better than others.

———- from a few weeks ago, on a not-so-good day ————

Suzy and I just watched the movie Nomadland, and although not spectacular, it was interesting and thought-provoking. It’s made me reflect on the things I miss since finding out I had cancer during the time of Corona.

First, I have really missed the trailer, the places we go and get to see and do. Our big months-long trailer trip last summer was canceled due to the pandemic before I was diagnosed, but my cancer and subsequent issues make me wonder if I will ever be able to do it again. [Update from a better day: We have a few small trips scheduled, and are hopefully even meeting Suzy’s sister and brother-in-law, Donna and Bob, in Colorado. Thanks, Pfizer!]

There was a scene in Nomadland where they were eating Thanksgiving dinner. So much of that is not possible for me right now – the quantity of food, the wide variety, drinking wine. Just so much makes we wonder if it’ll be possible for me to enjoy a meal like that again. It’s hard to even be social while I eat, since I still have to concentrate so much on the process of eating. [Update: I can at least eat many of those foods, even if I can’t taste them.]

I love to cook but I have to ask Suzy how it tastes. I made chili the other day, but couldn’t add the chili powder, because I couldn’t taste it. Some things actually taste bad to me, not because they are bad but because my taste buds make them taste bad. Like beer, it simply tastes a bit off, but I always think I should have one with dinner, just to enjoy the fact I am tasting something.  [Update: Not much has changed in this department, and I still love to cook even though I’m guessing at the seasonings.]

The simple act of eating on the go is hard. Many foods are hard to eat, and it even varies from day to day. I had to throw out a grilled cheese sandwich the other day because it wasn’t the perfect amount of melted. There aren’t a lot of workable options for me when I have to grab something quick, like when I’m playing golf or we’re on a day trip. [Update: This is still tough. I switched to protein drinks and smoothies when I’m out.]

It’s hard having people tilt their head a bit and ask me how I am. It’s very kind, but it makes me think about it and I’d really rather not have every conversation center around my health. [Update: It’s just hard not talking about cancer, for me and everyone else.]

My mouth simply feels out of sorts all the time. It aches ever so slightly, is dry, tastes bad, and is a constant reminder of cancer’s impact. [Update: It’s still a reminder.]

The worry is always in the back of my mind that I may not be cancer-free and what it means if they find cancer at the end of March. My treatments were very challenging. What could they ratchet it up to?  [Update: Still scared shitless.]

I always imagined living a long time, seeing what life would bring for Suzy and myself and Eric and Lee. Now there’s so much uncertainty. [Update: Although I still feel this way about the future being uncertain, there are benefits to being more aware of today.]

———— Back to today ————

All I can do is just keep counting down the 2 weeks to my PET scan. And appreciate the “some days are better” days when I have them.