Day 325 - One Year Later

Wow, it's been a year since Jess and I sat in the doctor's office, trying to remember how to breathe, to not pass out, to not collapse into a puddle when we were given the massively unexpected news about my cancer. The title doesn't reflect a full year because I didn't start blogging about it right away, but yeah, it was last December when we were hit by a freight train.

In that year, I've gone through one full round of radiation and chemotherapy that was a hellish nightmare: constantly sick, mentally and emotionally checked out, zero energy or motivation, weak, spitting into a cup, feeding through a tube, curled up around the toilet, a shell of myself. We lived in a hotel for a while in order to do treatments. We moved from West Virginia, to Virginia, when the second round of treatments began so that we could be close to medical facilities. When it became apparent that I could not do my job at the college, and had to go on Social Security disability, we made the decision to move back to NJ, with family and friends.

This second round of treatments has been much better. It's part chemo and immunotherapy, with a dash of daily chemo pills. The tube was removed months ago and a port put in. I've been poked, prodded, needled, cut, scoped, scanned, and tested a gazillion times this year. But if how I feel now is any indication, then things are improving.

I'm happy to say that I feel pretty good. I have energy and strength back. I am present and, as Jess has said, the light is back in my eyes. I have focus and drive and one hell of an appetite. I'm putting weight back on. I can do things and, unlike the first round, I am enjoying a much better quality of life. The cancer is still there. It's still stage IV, but as of the last scan, it had not spread anywhere else and it has not grown or gotten worse. I don't think there was any major change in the esophageal masses, but the lymph node in my neck saw some pretty significant reduction. The fact that I can eat normally, with no issues, tells me that the esophageal masses have been reduced a good bit. Dare I say, significantly?

So, where am I now? What's next? I'm still in the routine of chemotherapy and immunotherapy treatments. I go every three weeks for infusions. I also take pills, twice a day, for the first two weeks of the treatment cycle. The doctor plans to do another scan soonish - maybe in a month or two. That will give us an idea of where things are and what the continued plan is. I can't stay on the one chemo drug (oxyplatin) for too long, because it will lead to permanent nerve damage (tingly fingers and cold sensitivity). Then there's also the added concern of what everything does to all of my other organs, heart included. There's no getting through any of this unscathed.

Somehow, I have not lost my hair! It's full and wavy and somehow shaking its follicles in defiance. I'm not back up to what I weighed pre-cancer, but I don't look as skeletal, as pale. I'm going to start working on getting some strength and muscle back in the new year and Jess and I are going to take yoga classes together!

Because I've been feeling better, we've been able to actually go on some trips. We went to Florida for a conference, where one of my books, The Haunted Mustache, is up for an award. We just visited Florida again to visit family (both Jess and I have family there) and had a wonderful time. We had our Delaware beach trip in October. None of those things seemed possible back in "the dark days of treatment". But they're possible now, and we're taking advantage of the time, and energy, and improvement. We're taking advantage of life, of our life and time together, and doing our best to enjoy it while we have it.

So, as I wrap this up for the year, I'd like to thank all of you for the generous support, kindness, love, friendship, cards, contributions, thoughts, prayers, time, and attention you have given to both of us. We are immensely grateful and want you all to know that you truly have (and continue to) helped us through the darkest of times. We still have quite a road ahead of us, and no idea what is around the next bend (do any of us?), but right now the shadows aren't as tall and the sky not as gray. I wish you all the happiest of holidays and a wonderful start to your new year. Let 2024 be filled with brightness, joy, and peace.

• j