The tumor -- as a real thing AND as a metaphor -- is such a stunning symbol. I’ve often believed I have tumors that aren’t there -- the flip side. What does any of it mean about fear & denial? Thank you for sharing your husband’s story & the tennis player’s story.
Given this year my father-in-law died of cancer because he refused to go to the doctor, I'm just glad this lady decided to go to the ER. I hope her cancer can get its ass kicked and she'll be okay. Same to you and your hubby. Give cancer the middle finger.
This was very interesting and so well written! My uncle had a brain tumor and died in October of 2022. He was not too late to get treatment, but his diagnosis discouraged him to the point that he bought himself a few months with brain surgery to remove the tumor but was unwilling to try radiation. Ultimately I watched his gradual decline when the tumor returned, and he died only a year and a half after his mother died from complications from surgery she had because of liver cancer. My grandma was still trying to fight her liver cancer when she got an infection from the surgery and became septic. She had had colon cancer 11 years earlier that was caught early and only required surgery to remove the tumor. This time she wasn’t so lucky, but she still had options. Looking back on her death, I am still baffled by how quickly the reality as her family went from she is having a complication from surgery for cancer to she is going to die from this in a few days.
I am someone who waited longer than I probably should have to get answers in my own life (we tried to have a baby for two years after my first miscarriage before I sought treatment- ultimately fertility treatments didn’t work, but I spontaneously conceived the cycle after the 4th IUI failed, so I am grateful we went down that path). I have a kind of decision paralysis at times, and I am glad we did decide to pursue treatment even if it created more questions (our diagnosis was primary unexplained infertility) because at least we knew that there was a likely possibility we could conceive. Every day when I look at my now 4 year old daughter, I am grateful we decided to stop denying there was a problem and look for answers because I know some of the changes we made for treatment are likely what helped us conceive and gave us our beautiful daughter.
I have a ton of shame somehow. Even at the dentist! I think I will be one of those people who procrastinates and dies as a result. Sorry about your uncle!
There's a typo but one so good it probably deserves to stay: When I finish the physical exam, I sit down bedside the tennis patient ... should read beside presumably
Can I ask a question which has been puzzling me: why are you confident about getting the trial drug that you are in a trial for? Surely you have a 50 50 chance of being a control and therefore on the best current treatment not the trial drug?
So, most phase 1\2 cancer studies aren't blinded at all. Phase three is where you see more of the "standard of care" directly compared to the "new drugs", and those tend to be blinded. For cancer phase 1 trials you're looking at mostly dose escalation - which means the patients know they're getting the study drug, usually it's a first time in human. One person gets a dose, they wait to see response, then they get a little higher dose, etc, until a dose for the phase 2 trial is decided on. In Jake's case, he's in a phase 1b expansion arm\phase 2, which means that they decided on a dose in phase one, and are now, in phase 2 , seeing how it affects specific tumor types (thats the expansion part, and he's in the head and neck expansion cohort). Sometimes there are other arms where they compare the study drug with other new or standard or care medications, but patients know because they have to qualify for those arms specifically. The reason there isn't blinding at this point, is because the end point goal of a phase two isn't comparison against standard of care, it's determining if the drug has any effect, and how much, on a specific tumor. So if the drug looks effective, then the next phase 3 study, unless it gets a fast-track designation to skip the line, will be pitting it against standard of care. Then the blinding happens. The plot twist was that the FDA decided they wanted the study to evaluate two doses, to see if a lower dose worked as well as the higher dose determined in phase one, so while there wasn't blinding, there was randomization, which a lot of phase 2's can have. So, Jake did get randomized to the lower dose, but we knew about it. At that point you can still say no thanks if you want to, but wouldn't be placed in a different arm. Long answer, I hope that clears it up!!
So, I just donated $50 anonymously to your gofundme. Then I realised that anonymous donations aren't so useful in my war on Effective Altruism so I have just added $10 in my own name. I hope you find the money both altruistic and effective. X
i’ve seen surgeons transform an existing reality into a completely different one and concluded that they are, functionally, wizards and they get to be like that 😂 (thank you for another beautifully written, moving essay)
An “inside” story of doctor’s and patient’s thoughts, well written and impactful. Thank you for this insightful, touching piece.
" Steeped her tea bag in the waters of positive thinking".....nice!
This is such a moving piece, thank you 🙏
Beautiful writing. I’ll be praying for you and your husband.
The tumor -- as a real thing AND as a metaphor -- is such a stunning symbol. I’ve often believed I have tumors that aren’t there -- the flip side. What does any of it mean about fear & denial? Thank you for sharing your husband’s story & the tennis player’s story.
WOW amazing writing, really makes me want to be TOTALLY READY TO DIE but I have no idea how to do that!
Given this year my father-in-law died of cancer because he refused to go to the doctor, I'm just glad this lady decided to go to the ER. I hope her cancer can get its ass kicked and she'll be okay. Same to you and your hubby. Give cancer the middle finger.
This was very interesting and so well written! My uncle had a brain tumor and died in October of 2022. He was not too late to get treatment, but his diagnosis discouraged him to the point that he bought himself a few months with brain surgery to remove the tumor but was unwilling to try radiation. Ultimately I watched his gradual decline when the tumor returned, and he died only a year and a half after his mother died from complications from surgery she had because of liver cancer. My grandma was still trying to fight her liver cancer when she got an infection from the surgery and became septic. She had had colon cancer 11 years earlier that was caught early and only required surgery to remove the tumor. This time she wasn’t so lucky, but she still had options. Looking back on her death, I am still baffled by how quickly the reality as her family went from she is having a complication from surgery for cancer to she is going to die from this in a few days.
I am someone who waited longer than I probably should have to get answers in my own life (we tried to have a baby for two years after my first miscarriage before I sought treatment- ultimately fertility treatments didn’t work, but I spontaneously conceived the cycle after the 4th IUI failed, so I am grateful we went down that path). I have a kind of decision paralysis at times, and I am glad we did decide to pursue treatment even if it created more questions (our diagnosis was primary unexplained infertility) because at least we knew that there was a likely possibility we could conceive. Every day when I look at my now 4 year old daughter, I am grateful we decided to stop denying there was a problem and look for answers because I know some of the changes we made for treatment are likely what helped us conceive and gave us our beautiful daughter.
I have a ton of shame somehow. Even at the dentist! I think I will be one of those people who procrastinates and dies as a result. Sorry about your uncle!
Beautiful.
thank you, Katy
This is so, so, so freaking good.
Thank you, Rachael
Utterly brilliant piece of writing.
There's a typo but one so good it probably deserves to stay: When I finish the physical exam, I sit down bedside the tennis patient ... should read beside presumably
Good catch! Let's split the difference and it'll be "I sit bedside beside the patient" ;)
Can I ask a question which has been puzzling me: why are you confident about getting the trial drug that you are in a trial for? Surely you have a 50 50 chance of being a control and therefore on the best current treatment not the trial drug?
So, most phase 1\2 cancer studies aren't blinded at all. Phase three is where you see more of the "standard of care" directly compared to the "new drugs", and those tend to be blinded. For cancer phase 1 trials you're looking at mostly dose escalation - which means the patients know they're getting the study drug, usually it's a first time in human. One person gets a dose, they wait to see response, then they get a little higher dose, etc, until a dose for the phase 2 trial is decided on. In Jake's case, he's in a phase 1b expansion arm\phase 2, which means that they decided on a dose in phase one, and are now, in phase 2 , seeing how it affects specific tumor types (thats the expansion part, and he's in the head and neck expansion cohort). Sometimes there are other arms where they compare the study drug with other new or standard or care medications, but patients know because they have to qualify for those arms specifically. The reason there isn't blinding at this point, is because the end point goal of a phase two isn't comparison against standard of care, it's determining if the drug has any effect, and how much, on a specific tumor. So if the drug looks effective, then the next phase 3 study, unless it gets a fast-track designation to skip the line, will be pitting it against standard of care. Then the blinding happens. The plot twist was that the FDA decided they wanted the study to evaluate two doses, to see if a lower dose worked as well as the higher dose determined in phase one, so while there wasn't blinding, there was randomization, which a lot of phase 2's can have. So, Jake did get randomized to the lower dose, but we knew about it. At that point you can still say no thanks if you want to, but wouldn't be placed in a different arm. Long answer, I hope that clears it up!!
It does!
So, I just donated $50 anonymously to your gofundme. Then I realised that anonymous donations aren't so useful in my war on Effective Altruism so I have just added $10 in my own name. I hope you find the money both altruistic and effective. X
Thank you Robert! We appreciate it. Why did you decide to war on Effective Altruism? What kinds of weapons are optimal in this war? ;)
i’ve seen surgeons transform an existing reality into a completely different one and concluded that they are, functionally, wizards and they get to be like that 😂 (thank you for another beautifully written, moving essay)
Haha true, Jake’s surgeon is basically Gandalf skill-wise.