Day 1...
but not really, because this didn't start today, but the blog did and a blog journal kind of thing has to start somewhere and it's probably better if it starts at "Day1". I mean, you might feel like you were missing something if I started this at "Day 17" and you'd be trying to find the previous posts (although that's probably presumptuous of me to assume that you might be that interested in the first place to go looking for the previous posts). However, because you are here, I am going to assume that you are at least mildly interested. You might be family, or friends, or friends of the family, or a wandering nomad with whom I shared a cup of tea, on a hilltop, in Nepal. And if you are none of those people, if you wandered here by accident, or maybe because any hashtags I may attempt to use, pulled you over here, welcome.
Welcome to my little space to write about my new experience with esophageal cancer. I am a writer, and so, I will write. It's cathartic...that is what I have always told my students and now, I am telling myself (and you). That's what this blog is going to be about, my life and experience and struggle and (hopefully) successes against the DRAGON: esophageal cancer. It will be honest, genuine, hopefully entertaining, and maybe insightful. We will laugh, groan, cheer, hiss, maybe cry, laugh some more, and feel all the feels.
But why a dragon? Well, in the days of yore, long before Anne McCaffery's Dragonriders of Pern series, before the animated movies How to Train Your Dragon, before Game of Thrones, back when maps still said "Here, there be Dragons", the dragon was a terrible, cunning, destructive beast that embodied the unknown, fear, and demise; like Smaug, in Tolkien's The Hobbit.
Here is a terrifying, angry instrument of destruction. Look at what he did to Lake Town and Erebor! And so it is with cancer - a terrifying beast that wants only to consume and brings with it disruption and destruction. It is my metaphor. I've been carrying my wooden sword and hefting my cardboard or trashcan-lid shield since I was young. And now it is time for me to face the ultimate challenge, the Dragon that has come to raze my lands and threaten my kingdom.
So, how did we get here? I'll try and give you a very brief recap (like those "Previously on..." things that come at the beginning of a television series). This has all literally happened in like the last two to two and a half weeks. Okay, here we go. Sick since mid-December, no appetite, trouble swallowing, congestion and coughing. One day I cough up/throw up a little blood and what looks like coffee grounds. That's not right. Hmm...not getting any better come beginning of January. Losing weight. Trouble swallowing. Go to Urgent Care: you have the flu. A few days later, feeling like this is not just the flu, I go back and insist on a chest X-ray (at my wife's urging) and it reveals some kind of shadow on my lung that they think is just a bronchial infection: antibiotics, steroids, best of luck. Not buying it. Things are still not right. Go to my primary (yes, which I should have done in the first place) and they order a CT (Cat) scan. Then I get a call a couple of days (maybe a day) later: "We'd like you to come in to discuss the results of your CT scan." Ruh-roh, that's not good.
Results show several "nodules" (still not sure what that means) in or around the lung area that aren't that concerning, a mass in my upper esophagus and a very large mass in my lower esophagus. Plus, throw in some scarring in my right lung for dramatic flare. Prognosis: this is serious shit. Then the whirlwind kicks in and literally, in the last two weeks, it has been meeting with the oncologist, referral to GI, emergency endoscopy and biopsy of both masses, referral to thoracic surgeon, consult with thoracic surgeon, PET scan scheduled (in two days from now) to make sure the cancer hasn't spread anywhere else, awaiting biopsy results (for stage and severity), scheduled for surgery to have a feeding tube put in (probably Friday also - awaiting confirmation), meeting with nutritionist, and gearing up for radiation treatments, chemotherapy, and eventual surgery, where they will remove most of my esophagus and pull my stomach up, making it more of a conduit, and less of a "sac".
I'm on a liquid diet because the larger mass is so big that it is almost completely blocking my esophagus where it meets the stomach (G-valve - isn't this educational? We get to learn all kinds of parts of the body!). The doctors are concerned that if I were to aspirate solid food because it can't go down, or bring up acid, that it could go into my lungs and cause a whole new set of problems. So, it's been broth, protein drinks, smoothie kind of stuff...and that's it. I am craving pizza, tacos, sushi, a cheeseburger...listen to me. Listen closely. Don't take your tacos for granted. The next time you eat a taco, you eat that taco for me, and you savor every damn bite. You never know when it might be your last taco for a long time.
I have to get the feeding tube because I need to have nutrition and put weight back on in order to have strength for the surgeries and treatment (I've lost like 30 pounds in 6 weeks). Oh, and so I don't starve to death.
I'm pale, much thinner, tired, anxious, scared, and frustrated. But I'm ready to fight. I'm ready to slay this Dragon and rebuild my kingdom. I've got an amazing partner by my side, my wife and shieldmaiden, Jess, and a wonderful community of friends and family who are here to support and help us. I'm not going into this alone, I know that. But ultimately, it will come down to me facing the Dragon, and I will prevail.
I hope you'll return and read more of my adventures, and post comments, ask questions, chat with me. Thanks for taking the time to read my words. Be well, friends.
- Joe