Soon after my cancer diagnosis, our local theater offered up a free showing of the gilded fantasy, The Princess Bride. I probably watched the film a dozen times in my 20s and 30s, but not for quite a while. A few scenes carried a bit more juice than I expected, as I sat in the darkened theatre, my wife on one side, daughters on the other, mulling the ramifications of my expanding left tonsil. Inigo Montoya describing his alcohol-fueled dissolution after losing his father as a child was rather a kick to the knees. I don’t want my daughters turning to the bottle if this treatment fails! Then there was the
You have managed to invoke two of my all time favorites. Everyone loves the princess bride, so that was an obvious reference. But spinal tap is so fringe Buzz - and no less the funniest part of the movie is Nigel’s custom-made volume knob that goes to 11! Ok, the spontaneous combusting drummers is a close #2.
But it is such an unlikely place to offer up a fringe satire as a comparative to your legit hard core health crisis, the likes of which only you could humorously conjure. I think the miracle of your cancer experience is that your humor is your impenetrable secret weapon.  if I were your oncologist trying to talk PEG sense into you I would probably just say “as.....you......wish.....”
Buzz~You've gotten all the stats, stories , and advice you could possibly need. So this response must be for my own benefit. I too skipped the IP port, portacath, and even PICC contraptions for various reasons. Dropped 30 lbs on chemo alone, but my endomorphic self could handle it. I hope you'll at least consider I.V. fluids. Not sure how you can even mention a Mexican buffet at this time, but kudos and continued progress in your tx.
Thanks for the update Buzz--all things considered I think your uneven progress is moving in the right direction.
Tomorrow is the big day for me, starting "light" cisplatin chemo with radiation for my own HPV-induced tonsil cancer. Trying to keep it upbeat, I plan on asking at the desk when I arrive if I can have some extra towels and when the buffet closes.
May you skate through your treatment -- well, best as anyone can. I think the most useful advice I got was from a couple sources including my wife: "it does not always get worse." It does keep changing, though. Don't joke about the towels; they'll layer them on you during your radiation like a corn tortilla at the Mexican buffet.
Upon my dx I automatically made the decision to avoid the PEG..having placed PEGs myself they are not without challenges, all of which flashed before my vision.
I also had a plan..on my first weigh in I wore my plain working boots..near the end of Trx having gone from 240 ish to 187 I started wearing my similar boots..which were steel toed!
Additionally, I had my long suffering and very patient oncologist check my pre albumin..barley made it, lowest level achieved was 17!
I’m afraid I was that Pt
I hope some of the above is worth a chuckle.
You’re in my thoughts for the best of outcomes and future life.
PS:
My movie was avengers endgame with me relating to Tony Stark filming a posthumous video for his daughter of which I have two. I very much thought I was not going to make it at Stage IVB
I’m now 2 years out from adjuvant therapy and I fully believe you’ll be there in due course.
You are definitely "that patient," switching into your heavy boots -- if there is a purgatory for medical professionals before they get to be Beverly Hills dermatologists in Heaven, you are going to have some scut work to do to atone for that move!
Hello Buzz, I can't say I have endured the level of pain and discomfort you have but I admire the way you are handling your situation. The good news is that you are feeling much better and being able to take some solid food is very encouraging. Having been there when my wife gave birth our daughter and later my son I have to agree that childbirth has to be a 10 on the pain scale. There would be far less children in this world if the males had to give birth ! All the best and we look forward to seeing you soon.
I watched The Princess Bride a couple days ago too. It's a beautifully crafted film with a great subtext on topics of pain, suffering and desire. I love the "mostly dead" scene - are we alive or not? Is it a binary state or a spectrum? Only the living feel pain so it is a bright sign that you are fully alive. Pain is also not quantifiable, it's not on the periodic table of elements and can't be measured by any means but the subjective expression of a living subject, it's an abstract concept invented by living organisms to inform our experience like joy and sadness. As abstractions they have no limits, no limit to the amount of pain or joy we may experience on the sole condition that we are alive; the dead don't enjoy these things.
On my path I realized there's no point fighting chronic pain. True "pain killers" don't exist; all we have are drugs that give you a different problem to worry about which would be more accurately be called "pain distractions". In an acute situations like surgery "pain distraction" makes sense but for chronic pain it only leads to chronic distraction. Fortunately we are born with a power of forgetting that exceeds our ability to remember so there is no amount of pain we can't forget.
You have seven weeks to live, or seven years, or seven seconds, but you are most definitely alive my friend.
Kanoa, if ever I am drinking coffee again, I might need a few cups with you to hash out whether pain and pleasure are indeed abstract concepts or the fundamental aspect of our evolutionary wiring. But I sure can build up my pain when whining about how terrible I feel and how bleak the Seattle winter is etc etc vs, say, when Brock Purdy is throwing a 70 yard TD to Deebo Samuels, the other 49er on my fantasy football roster. Amazingly I become unaware of all this suffering. Strange.
I'm drinking coffee right now which I thought I might never do, at home where I thought I might never return, and moaning silently which I've learned to do for the sake of others around me. When you get home we can do this together and pontificate on the abstract nature of pain and widespread internal tissue damage. I guarantee it will be pleasurable! I can't guarantee it will be painless but we can put pain in its place and talk about it in the same category as home insurance and bowel movements. Heheh, looking forward to that!
It's funny - going through this experience WITHOUT a PEG has probably increased my advocacy for getting a PEG! The lack of appetite, and now profound need for napping much of the day, makes it so very hard to keep up calories, and that's with a "won-the-lottery" lucky mouth thus far. I totally get the appeal for all but the stubbornest! Ofc, there is a measure of good luck, tumor location, type of radiation, inclusion of cisplatin, etc. I wonder if MDA really focuses on smaller tumors getting radiation only to discourage the PEG.
You have managed to invoke two of my all time favorites. Everyone loves the princess bride, so that was an obvious reference. But spinal tap is so fringe Buzz - and no less the funniest part of the movie is Nigel’s custom-made volume knob that goes to 11! Ok, the spontaneous combusting drummers is a close #2.
But it is such an unlikely place to offer up a fringe satire as a comparative to your legit hard core health crisis, the likes of which only you could humorously conjure. I think the miracle of your cancer experience is that your humor is your impenetrable secret weapon.  if I were your oncologist trying to talk PEG sense into you I would probably just say “as.....you......wish.....”
Buzz~You've gotten all the stats, stories , and advice you could possibly need. So this response must be for my own benefit. I too skipped the IP port, portacath, and even PICC contraptions for various reasons. Dropped 30 lbs on chemo alone, but my endomorphic self could handle it. I hope you'll at least consider I.V. fluids. Not sure how you can even mention a Mexican buffet at this time, but kudos and continued progress in your tx.
Bravo Buzz! To the Cure!
"You're a better man (and braver) than I am, Gung Din!"
🙏🏻🙏🏻🙏🏻
Thanks for the update Buzz--all things considered I think your uneven progress is moving in the right direction.
Tomorrow is the big day for me, starting "light" cisplatin chemo with radiation for my own HPV-induced tonsil cancer. Trying to keep it upbeat, I plan on asking at the desk when I arrive if I can have some extra towels and when the buffet closes.
May you skate through your treatment -- well, best as anyone can. I think the most useful advice I got was from a couple sources including my wife: "it does not always get worse." It does keep changing, though. Don't joke about the towels; they'll layer them on you during your radiation like a corn tortilla at the Mexican buffet.
Keep on Trucking!
Closing in on the end of Trx and on to recovery!
Upon my dx I automatically made the decision to avoid the PEG..having placed PEGs myself they are not without challenges, all of which flashed before my vision.
I also had a plan..on my first weigh in I wore my plain working boots..near the end of Trx having gone from 240 ish to 187 I started wearing my similar boots..which were steel toed!
Additionally, I had my long suffering and very patient oncologist check my pre albumin..barley made it, lowest level achieved was 17!
I’m afraid I was that Pt
I hope some of the above is worth a chuckle.
You’re in my thoughts for the best of outcomes and future life.
PS:
My movie was avengers endgame with me relating to Tony Stark filming a posthumous video for his daughter of which I have two. I very much thought I was not going to make it at Stage IVB
I’m now 2 years out from adjuvant therapy and I fully believe you’ll be there in due course.
Ah, I can't even think about scenes like that.
You are definitely "that patient," switching into your heavy boots -- if there is a purgatory for medical professionals before they get to be Beverly Hills dermatologists in Heaven, you are going to have some scut work to do to atone for that move!
Hello Buzz, I can't say I have endured the level of pain and discomfort you have but I admire the way you are handling your situation. The good news is that you are feeling much better and being able to take some solid food is very encouraging. Having been there when my wife gave birth our daughter and later my son I have to agree that childbirth has to be a 10 on the pain scale. There would be far less children in this world if the males had to give birth ! All the best and we look forward to seeing you soon.
I watched The Princess Bride a couple days ago too. It's a beautifully crafted film with a great subtext on topics of pain, suffering and desire. I love the "mostly dead" scene - are we alive or not? Is it a binary state or a spectrum? Only the living feel pain so it is a bright sign that you are fully alive. Pain is also not quantifiable, it's not on the periodic table of elements and can't be measured by any means but the subjective expression of a living subject, it's an abstract concept invented by living organisms to inform our experience like joy and sadness. As abstractions they have no limits, no limit to the amount of pain or joy we may experience on the sole condition that we are alive; the dead don't enjoy these things.
On my path I realized there's no point fighting chronic pain. True "pain killers" don't exist; all we have are drugs that give you a different problem to worry about which would be more accurately be called "pain distractions". In an acute situations like surgery "pain distraction" makes sense but for chronic pain it only leads to chronic distraction. Fortunately we are born with a power of forgetting that exceeds our ability to remember so there is no amount of pain we can't forget.
You have seven weeks to live, or seven years, or seven seconds, but you are most definitely alive my friend.
Kanoa, if ever I am drinking coffee again, I might need a few cups with you to hash out whether pain and pleasure are indeed abstract concepts or the fundamental aspect of our evolutionary wiring. But I sure can build up my pain when whining about how terrible I feel and how bleak the Seattle winter is etc etc vs, say, when Brock Purdy is throwing a 70 yard TD to Deebo Samuels, the other 49er on my fantasy football roster. Amazingly I become unaware of all this suffering. Strange.
I'm drinking coffee right now which I thought I might never do, at home where I thought I might never return, and moaning silently which I've learned to do for the sake of others around me. When you get home we can do this together and pontificate on the abstract nature of pain and widespread internal tissue damage. I guarantee it will be pleasurable! I can't guarantee it will be painless but we can put pain in its place and talk about it in the same category as home insurance and bowel movements. Heheh, looking forward to that!
High-fives to you because your treatments may wind down by Super Bowl Sunday!
It's funny - going through this experience WITHOUT a PEG has probably increased my advocacy for getting a PEG! The lack of appetite, and now profound need for napping much of the day, makes it so very hard to keep up calories, and that's with a "won-the-lottery" lucky mouth thus far. I totally get the appeal for all but the stubbornest! Ofc, there is a measure of good luck, tumor location, type of radiation, inclusion of cisplatin, etc. I wonder if MDA really focuses on smaller tumors getting radiation only to discourage the PEG.