My last update was 20 days ago, so it's time for another catch up post on Tom and his cancer journey! Sit back, grab some popcorn, and don't get too comfortable -- we are talking about cancer after all. Things certainly can't be wonderful at the same time that they're miserable, can they? BUT THEY CAN!
๐๐จ๐จ๐ ๐๐๐ฐ๐ฌ: The tumors in my left lung are shrinking! I had a CT scan last Wednesday and the doctor gave me the good news. All the chemo hand-in-hand with the blessings, prayers, thoughts, a little holistic medicine, and even the medicine Buddha mantra (thank you Sean) have resulted in visibly smaller tumors. The Uber Wife and I celebrated with some Costa Vita!
๐๐๐ ๐๐๐ฐ๐ฌ: I still have cancer, and it's not going to be easy to get rid of. Keep it coming! This is a long fight. The third biopsy yielded genetic results that were, as my doctor called them, rare and interesting. He didn't know what to make of them since typically most lung cancers have some relatively well-known mutation like ALK. Nope, mine manifested something called FANCG (๐.1642๐ถ>๐, ๐.๐ 548*) – ๐๐๐กโ๐๐๐๐๐๐ (๐๐๐๐ 1–2, ๐ ๐๐๐๐ก๐๐) and RET (๐.1063+11๐๐๐๐ถ) – ๐๐๐๐๐๐๐ก ๐๐ ๐๐๐๐๐๐ค๐ ๐๐๐๐๐๐๐๐๐๐๐๐ (๐๐๐๐ 3, ๐ ๐๐๐๐ก๐๐). While ChatGPT gave me some mixed hope with FANCG, my doc let me know that it's nothing that could really be actionable. RET, well, this mutation was more like . . . well . . . not much research has been done with it, so, good luck?
๐๐จ๐จ๐ ๐๐๐ฐ๐ฌ: My doctor felt like I was still a good candidate for Immunotherapy and specifically a lung cancer trial turned lung cancer treatment called Checkmate 9LA (it was approved for use about 5 years ago or so). This will wrap in the immunotherapies known as ipilimumab and nivolumab alongside chemo. If it works, it has double the chance of sending my cancer into remission as my chemo did.
๐๐๐ ๐๐๐ฐ๐ฌ: I'm legitimately terrified of moving on by adding immunotherapy to my chemotherapy regimen. I read too much about it online, and I don't like the odds for developing an auto-immune disorder from this amazing cancer killing method. I guess it really comes down to a "would you rather" type of question: Would you rather have a chance of living the rest of your life with an auto-immune disorder or simply dying with cancer? I'll take being alive, please. Most people are fine, but you are rolling the dice. (is a hard +1 Constitution Saving throw for my D&D friends)
๐๐จ๐จ๐ ๐๐๐ฐ๐ฌ: I just got back from an amazing lunch at Santorini's Greek Restaurant at Farmington Station. My good friend Colleen bought me lunch, but only after she and my other hard-working buddies, Mandy and Hannah, entertained me through 3 hours of infusion at the Huntsman Center there in Farmington. My friends are calling themselves "Team Tom" and I am truly humbled by the love, kindness, and example they've shown me today. I have often said how lucky I am to have strong female role models -- my wife, my relatives, and good friends like these. So many kind and loving women in my life. Seriously! I feel blessed! Truly examples of how I would like to be able to treat others.
๐๐๐ ๐๐๐ฐ๐ฌ: I forget this a lot. I forget how blessed I am, and I end up sighing to the rafters in my bedroom, cursing the cancer inside of me and how stupid it all feels. How dumb I feel for having cancer. How much inconvenience it causes. The pain of it all. How it feels to be worlds apart from my fat-and-happy-Tom-days in Texas. I had it so good for so many years, how did I end up with this stupid crap in my lungs and back in Utah? I sometimes make the joke that I'm "Stage 4 at JT4" at my job here in Utah and I used to be "Fat and Happy Tom" in Texas . . . you know, just making, promoting, and playing games. THE LIFE! No, no . . . I am blessed. It's just hard to see it sometimes, and that's just one of my many failings. Thank you, role models!
๐๐จ๐จ๐ ๐๐๐ฐ๐ฌ: I was able to have some complimentary music therapy from the Huntsman Institute! My social worker turned me on to a really cool benefit (if you can say there's a silver lining to having lung cancer) where I can get 6 sessions of music therapy. I sat down with Indigo and an intern and basically talked about my entire music history. (by the way, if you're interested and have a half hour of time to read it, you're welcome to read more here: https://tompurdue.blogspot.com/2021/08/music-history.html). I truly want to write an album of music called "Cosmic Radiation and Bad Luck," named after what my doctor said was the most likely cause of my cancer. I know two tracks that I want on it for sure. (I'm in the process of adding to a Spotify inspiration song list for the general vibe I want to go for: https://open.spotify.com/playlist/1JGD472Z10LK5Zi77A59IL)
๐๐๐ ๐๐๐ฐ๐ฌ: I waste too much time playing video games to write music -- I should probably stop doing that, but man is Dune Awakening fun to play lately! I also dropped $12 bucks on a humble bundle deal that supplied me with 16 games that I've never played before. I'm doomed. (Not to mention all the great shows I still need to watch on Netflix, Disney+, HBO Max, Apple+, Prime, and on and on) It's nice to have so many distractions. First world problems at its best.
๐๐จ๐จ๐ ๐๐๐ฐ๐ฌ: Speaking of video game distractions, I've started reskinning my 1up machine to look like an honest to goodness Ghosts n' Goblins machine! Looking pretty great! So fun to play the classic Ghosts n' Goblins whenever I want. I've almost bumped the previous owner's high score off of the Top Ten (yes, I know I could just reset the machine, but where's the fun in that? The initials TDP will crush any memories of there even being a previous CPB as number one!)
๐๐๐ ๐๐๐ฐ๐ฌ: Man, the stickers that go on behind the screen and below the joysticks are going to be tough to place! I managed the sides and top easy enough though. eek! It's a lot of work, but I will see the project through!
~~
So really that's all that's been going on with me. I'm just trying my best to stay positive and really take in the words that you all have spoken to me: "If anyone can beat cancer it's you." Thank you for that vote of confidence! I'm taking it to heart and doing the best I can. If I boldly could ask for new thoughts, prayers, blessings, and mantras to focus in on my own immune system working to kill cancer with the help of immunotherapy and that my own immune system won't turn on me in the process, it would be more than I should ask for, and I appreciate it.
๐๐จ๐จ๐ ๐๐๐ฐ๐ฌ: Don't worry, you won't be blamed if my immune system does turn on me -- that'd all be blamed on my own Cosmic Radiation and bad luck. ๐
Thank you "Team Tom." If you made it to the end of reading all my nonsense, you're probably a new honorary member. We got this!
2 comments:
You definitely got this! GO TEAM TOM!
TT!! Gooooooooooo!!!
Post a Comment