Wow I feel this could be a workbook. These considerations are extremely helpful steps especially because it is the patient who needs time to reflect what all this means, (without familial pressure!). Sometimes my check ups-every 3 months now, are usually a review of the labs, and how is my quality of life. Last visit I asked what pallative care was as I noted that was the catergory my Dr had on her chart notes which are available to me. I was relieved that it didn't mean I was heading to hospice. I know my Dr. has a lot of patients so I feel I have to do my part and be informed. She had me do a DNA test for lingering cancers in the body and it came back 0 percent! Great, but can't help feeling, Ok now what! I will see her in a couple of weeks....but does it mean I am off the chemo? It's the truth that all news is perplexing with C! Thanks Hans!
The idea of game theory and life is a game resonates with many or at least with me. And I think football (the US variety) mimics life the best. Everything I needed I learned playing high school football. It has 4 quarters tracking the phases of a life time with a beginning and ending (OK, there is overtime which I chalk up in life as divine intervention). And there are rules but a lot of latitude in how you play. You can grind it up the middle. You can razzle dazzle double reverses, fake punts and quarterback sneaks. But there are fumbles, getting sacked and holding penalties. So what does this have to do with metastases? You see near the end of the game is the 2 minute warning. All the rules and possible plays are unchanged but the mindset changes. There is urgency. Your regular game plan goes out the window. The mind sharpens. Possibilities flood the consciousness. You must choose quickly, wisely and sequentially to reach your goal. You know that you must be calm and focused when it goes diametrically opposed to how you’re feeling. That is why fans marvel over well executed 2 minute drills. I feel the same after reading your post for today.
I liked your reference to decision fatigue and creating boundaries. None of my friends knew any more about my cancer than I did, yet opinions and advice abounded. Thankfully, I don't remember much about my first few months in treatment: too sick, too many drugs, too much of everything that made noise. Mine is a blood cancer for which there is no cure, though that inches closer, I'm told. At first I felt like the Sword of Damocles was penduluming over my neck. Each blood test filled me with terror. Now, five years in remission, I'm much more cavalier when facing a phlebotomist. Every day is an opportunity to practice patience; and meantime enjoy people, books, nice weather, bad weather, as much as possible. I've almost given up my pre-worry thoughts. I'll have many options when the time comes, but there's nothing to be done until the test results are, um, disappointing. They probably will be one day. Or maybe not. I love your posts. You're much more analytic than I am, but you clearly name the things we must deal with. My thoughts are mushier, yet decisions must be reached. Timing is all. Maybe. Ambiguity has become a close friend.
Wow, Hans, your essays are so profound for me! Each time I read one, I’m touched by something you express. This one rings very true for me, I have MIBC/PUC, very aggressive, but thankfully has responded to Padcev and Keytruda immunotherapies. It has taken it out of my lymph gland, and tumor tracking via DNA shows zero disease progression, for almost 2 years! I hope I can take advantage of some clinical trials in the future. I try and keep my focus on what I can do for others, I don’t want to become more of a burden to my dear husband than I already am. I tell people miracles happen everyday, small and large, to those who are willing to ask humbly. Funding for the National Cancer Institute must be restored, everyone deserves a shot at a cure, no matter what type of cancer they happen to have. Thank you again, I appreciate your perspectives. 🥰❤️
Wow I feel this could be a workbook. These considerations are extremely helpful steps especially because it is the patient who needs time to reflect what all this means, (without familial pressure!). Sometimes my check ups-every 3 months now, are usually a review of the labs, and how is my quality of life. Last visit I asked what pallative care was as I noted that was the catergory my Dr had on her chart notes which are available to me. I was relieved that it didn't mean I was heading to hospice. I know my Dr. has a lot of patients so I feel I have to do my part and be informed. She had me do a DNA test for lingering cancers in the body and it came back 0 percent! Great, but can't help feeling, Ok now what! I will see her in a couple of weeks....but does it mean I am off the chemo? It's the truth that all news is perplexing with C! Thanks Hans!
I reluctantly say " thank you", as no one wants to be in this space... but thank you for reading.
The idea of game theory and life is a game resonates with many or at least with me. And I think football (the US variety) mimics life the best. Everything I needed I learned playing high school football. It has 4 quarters tracking the phases of a life time with a beginning and ending (OK, there is overtime which I chalk up in life as divine intervention). And there are rules but a lot of latitude in how you play. You can grind it up the middle. You can razzle dazzle double reverses, fake punts and quarterback sneaks. But there are fumbles, getting sacked and holding penalties. So what does this have to do with metastases? You see near the end of the game is the 2 minute warning. All the rules and possible plays are unchanged but the mindset changes. There is urgency. Your regular game plan goes out the window. The mind sharpens. Possibilities flood the consciousness. You must choose quickly, wisely and sequentially to reach your goal. You know that you must be calm and focused when it goes diametrically opposed to how you’re feeling. That is why fans marvel over well executed 2 minute drills. I feel the same after reading your post for today.
It could also be a guide for cancer patients.
I liked your reference to decision fatigue and creating boundaries. None of my friends knew any more about my cancer than I did, yet opinions and advice abounded. Thankfully, I don't remember much about my first few months in treatment: too sick, too many drugs, too much of everything that made noise. Mine is a blood cancer for which there is no cure, though that inches closer, I'm told. At first I felt like the Sword of Damocles was penduluming over my neck. Each blood test filled me with terror. Now, five years in remission, I'm much more cavalier when facing a phlebotomist. Every day is an opportunity to practice patience; and meantime enjoy people, books, nice weather, bad weather, as much as possible. I've almost given up my pre-worry thoughts. I'll have many options when the time comes, but there's nothing to be done until the test results are, um, disappointing. They probably will be one day. Or maybe not. I love your posts. You're much more analytic than I am, but you clearly name the things we must deal with. My thoughts are mushier, yet decisions must be reached. Timing is all. Maybe. Ambiguity has become a close friend.
Totally agree!
Fuck!
Challenges
This chapter is very helpful.
Can be overwhelming at times.
Thank you, Hans!
Wow, Hans, your essays are so profound for me! Each time I read one, I’m touched by something you express. This one rings very true for me, I have MIBC/PUC, very aggressive, but thankfully has responded to Padcev and Keytruda immunotherapies. It has taken it out of my lymph gland, and tumor tracking via DNA shows zero disease progression, for almost 2 years! I hope I can take advantage of some clinical trials in the future. I try and keep my focus on what I can do for others, I don’t want to become more of a burden to my dear husband than I already am. I tell people miracles happen everyday, small and large, to those who are willing to ask humbly. Funding for the National Cancer Institute must be restored, everyone deserves a shot at a cure, no matter what type of cancer they happen to have. Thank you again, I appreciate your perspectives. 🥰❤️