“No Boots Left Behind” Cancer Clinic, for people unwilling to settle for less than a moon launch on the way out"
Our experience was so different but shared that same spirit of daring and urgency that a ticking time clock sets off. My hubby always burned the candle at both ends and joked he would sleep when he was dead while he was alive he was always finding time for fun. At 34 in peak health w NCAA sports & fitness was diagnosed w rare AML and given less than 10% chance of living more than 90 days. We got 7 years and an Odyssey I wouldn't wish on anyone or trade for the world w deep thanks to an incredible research team at Fred HUTCH who worked with us to accommodate the lifestyle choices and give patient autonomy the highest value. Also learned that for better or worse one in a million odds doesn't matter when you're the one.
It's wonderful to connect with so many others who have amazing and inspiring stories. "give patient autonomy the highest value" <---- That's what it's about! Robb did not completely reject every treatment offered but the problem is that you have to go through standard of care in order to get to a clinical trial with a therapy that might offer some hope. That's pretty difficult with GBM. At the time, I calculated the odds that he'd make it to be able to be placed in the treatment arm of anything worth trying was about 10%. I think Robb's surgeon gave him the first courage to reject conventional treatment (past surgery, which he did). She explicitly told him that radiation and chemotherapy would not cure and he would die. She also said that if she were to be diagnosed with it, she wouldn't do it. He was given 2 months without surgery and 6 months with. He did the surgery. Then we went to a Tijuana immunotherapy clinic 3 weeks later and he lived about 12 months past the first signs of the brain tumor. Pretty good! He actually worked throughout and was pretty much fully functional the vast majority of the time, despite the tumor being in one of the worst possible places (speech centers). It was an impressive result. The surgeon said the choices he'd made changed her thinking. When the second surgery was scheduled, the second surgeon who was brought in for it remembered the first surgery and said, "That guy is still alive??" The surgeon's secretary said she'd never seen a result like that in 15 years.
I can't imagine trying to find a research group we were just incredibly lucky there. Our son is a hemophiliac born at the end of the era of AIDS tainted blood & part of the single known donor program at Childrens hem/onc so we had a full blood history and a family of researchers than kinda plugged us in right away. Then our boy went into the recombinant clinical trial.. that works, unicorns everywhere! :~)
No Boots, No Shoes, No Shirt, No Problem. Stories to tell. Maybe I’ll do the same someday. After “losing it all” (which really wasn’t it all) my wife and I took off in 2012 on our 35 foot sailboat to see the world at 6 knots. Besides each other it was all we had left. A 2015 Dx of Kappa Light Chain Disease (LCD-2000 cases a year) and the scheduling of radiation, then chemo, then a Bone Marrow Transplant kind of curtailed our plan. After considering the cost, statistics, and LTSR I opted out. I had already gone through the cancer mill at age 40, with a 30/70 LTSR and was already past my 20 years. Most of those I met along that journey were dead. 7 years later we are still living on the boat, the trip around the world now just a dream. The neuropathy from LCD makes long passages really hard. But we opted for a moon launch too and damned if the rocket is still in flight. Our sailboat is named Blessings. Karma? Perhaps it is.
Absolutely effin' brilliant! What an incredible story. What amazing people there are here in this community. It's like discovering a diamond in a haystack. I can't wait to sign up for your newsletter. There are so many inspiring people like you who can teach us how to LIVE! Last year I was feeling very confined, and I took sailing lessons at the urging of a dear friend after we'd corresponded and he'd told me about his 37 foot Fisher and all the adventures he dreamed of taking in it. (He also owns a Pacific Dolphin 24.) What a wonderful experience those sailing classes were! But I wanted to do it all myself, too, without the scheduling a crew requires. So I bought a small dinghy only 10 feet long in which I strapped my camping gear in dry bags and sailed to an island about 5 miles away when I had an excellent weather window. I camped there for 2 days and sailed back. An amazing memory I'll always have, and an amazing time. I had to sell the dinghy when I moved to the US, but I bought a different one (11 foot Minifish) which I have taken out a few times. Can't wait to keep doing it this summer.
Last item. Yes. Keep doing it. Nothing like it. We have sailed over 45,000 miles together and have owned a sailboat since 1982. Part of the reason why trying to determine what to do next is really a challenge!
Monica that comment from CPJ is so amazing and spot-on that I must share it myself on my own newsletter. It fully encapsulates the pervasive unease I’ve felt about “modern medicine” and our unquestionable and absolute convictions that we are actually becoming healthier because of it - science and data confirming the falsity of those convictions be damned. Still, amidst this pandemic, friends ask me if I’ve had my yearly well check or some preventative check (that may or may not prevent anything) and I find myself faltering in how to answer. Because the answer is no. The answer is the distrust I used to have for our medical system has to turned to disdain. I’m happy we have access to life-saving emergency treatments, I am. But health is about so much more than seeing a doctor for a yearly well check (if it’s even about that at all). And the fact that most refuse to acknowledge or except that, confuses me the most.
From one confused, freedom-loving citizen to another, I look forward to following your journey.
Right on. I haven't been to a doctor in seven years, except to go to urgent care for a sinus infection in 2015. Lol.
I don't hate doctors. A very intelligent doctor once determined that no, I didn't have Chron's disease as I was catastrophizing. I just had a small hernia from lifting something too heavy in my 20s, it had been activated by inadvisable stomach exercises, and some lactose intolerance was causing my guts to push out into the space. The colonoscopy that told me I didn't have Chron's cleaned my intestines out enough that it eliminated the lactose intolerance. Problem solved.
Most doctors aren't as smart as that one, and why should I go if nothing is wrong with me? I admit I've been lucky to be remarkably healthy my entire life. When I began to suffer from a compressed disc in 2017 (not knowing then what it was), I tinkered with mineral intake and supplements. Not getting much relief I went to a chiropractor where the problem was diagnosed with an X ray, and I got nearly 90% instant relief from an adjustment. I was given tips on microscope and computer posture and walking. These and a mattress change, along with a few more months of chiro, fixed the problem 80%. What remained was further ameliorated by hormone replacement therapy. (I'm mid-40s.) Estrogen aids in rebuilding connective tissue.
What would have happened if I'd seen a doctor instead? Most likely I'd have been put on muscle relaxers or pain relievers and the problem would have continued to worsen until I needed surgery.
I'm the same. I don't go anywhere near a hospital if I can help it. To me, the issue with "modern medicine" is it would appear "modern" equates to pharmaceuticals. Doctors now treat symptoms, not problems. And it would appear the most pervasive way they treat those symptoms are with drugs. And therefore we don't get healthier. We just mask problems/disease. Don't get me wrong, there's a time and a place for drugs. But in our country (the U.S.) at least we've come to expect the necessity of them. To our greater detriment.
Chiropractors and functional medicine and holistic doctors look for root problems and attempt to solve those. To me, it appears clear that are doing it right. According to much of the civilized world, I am wrong. Worse, many in those industries are referred to as "quacks" or the "conspiracy theorists" of medicine.
Our medical model has gone completely astray. I dare say it's broken.
I aim to keep my stress levels way down and get more than enough sleep. That alone makes up for a lot that is lacking in other departments, in my experience.
CJP's comment is spot on. And I just fell in love with your late husband. Made me laugh and tear up. Wow. I'm working on giving my kids a Boots On childhood. I'm their mom; of course I want them to survive. But I'm on a mission to make sure they also live. The former is getting easier; the latter-- a huge challenge.
Nicely presented and written.... thank you kindly. Dr Cris Angel (retired WA DOH Advisor and Acu-Eastern Medicine) Cheers...survived pancreatic cancer dx plus eight years.
What a fun, wacky, and loving way to celebrate your deceased husband. When I am gone, I hope others might think of me in similar authentic, entertaining and full-of-life stories. This is a great challenge for me to think of authentic memories of both my parents and other loved family and friends who I miss greatly. Thanks
Hey thank you. My wife is a saint, which is the real reason we are still “out there.” She grew up on a boat. Taught me how to sail back in the late 70s. It’s at the point now that swallowing the hook and returning to land is the scariest decision we will face. It’s coming. But we keep postponing the inevitable as long as we can. Thx for the kind words.
Beautiful tribute to your late husband Robb who lived and died with boots on! Thank you for sharing his writing, Monica. Thank you also for bringing attention to CPJ's comments. Both reminded me of Ernest Becker's Pulitzer prize winning book The Denial of Death. Becker's book helps to explain why people will cling to and defend a system that reduces death anxiety even when the cost is a full, boots on experience of life. For anyone interested, Glenn Hughes wrote a paper that captures the spirit of Ernest Becker's argument. It can be found here:
You may enjoy the book "What do you care about what other people think" - Richard Feynman. His first wife (and high-school sweetheart) died from an incurable form of tuberculosis, when she was only 25. Both of them took the last part of her life with similar spirit as you described here.
Clever, and full of the joy of life. Would I be labeled a bad person were I to admit I've dreamed of the Month Two Special Event? That I've often thought were I to have a certain death sentence cancer, I would go on a killing spree? That I've always quietly agreed with Bill Munny that some folks just need killin'? I think I would have enjoyed a few beers with your husband.
Lol. 98% of everything I say is true. The rest is to make the story flow better. Speaking of baseball bats, I've said of my own son, "I could hit that kid upside the head with a baseball bat and the lesson would only last until he regained consciousness."
How insanely true! Granny did not let children to hug her this Christmas again. She does not want "that" death. I asked why Alcheimer is better. And why she even thinks that she can choose.
Monica, thank you so much for quoting my comment and especially associating me (unjustifiably, for sure) with the indomitable spirit of your late husband. It sounds like he was quite the force of nature. I most certainly would have been thoroughly unable to keep up! Thanks also to the other kind comments below.
I took my cue from this and wrote a little more on my thinking in this regard over here. Although we all struggle with language, I must say it is also a playground of delight. So thank you also for encouraging me in that respect. Whether the world has anything from it I do not know, but I certainly needed it.
When my little brother was Dxed, I asked whether they’d told him the odds of survival if he went forward with having an avastin wafer put in his head (then an experimental treatment)?
He snorted with laughter. “Chance of death is always 100% on Planet Earth!”
Oh yeah, we none of us get outta here alive.
What I think has happened (I’ve stated this elsewhere) is that the people who called themselves “spiritual not religious” twenty years ago became “the nones” after their shocked parents had accepted that they’d abandoned their various religious patrimonies. But nature abhors a vacuum, and like secular Jews, cafeteria Catholics, and feel-good atheists who all celebrate a version of “American Christmas” regardless of no serious belief in a Deity, millions of us crave ritual and miss having an authority to whom we owe obedience.
Ireland’s Dave Cullen stated last year his adjunct theory that the first generations of day care kids (“latch key” kids) grew up in the habit of obedience to strangers who were not their parents, so when someone says “wear a mask” they don’t flinch or question. Was this noticed by “hidden” authorities-to-be and included in the plans of Event 201 and its earlier iterations?
Solzhenitsyn said that in the Gulag everyone speculated endlessly about how they should’ve resisted so that enforcers would’ve been more fearful and less willing to carry out unjust orders but everyone knew themselves to be innocent, so why fear the State, even if what the State demanded was patently unjust or outrageous? “It will all be straightened out…” as they were dragged away in the night.
We know that the doctors themselves are corrupted otherwise they’d be alarmed. The courts are corrupted and looking at shifts in political and public opinions and formerly ironclad rights are now discussed as malleable, so they’re unreliable, and it’s global, so where can you run, where can you hide? The “unvaxxed” are being scapegoated and systematically removed from society with the help of politicians (or because of their desires??), doctors, and even courts and religious leaders.
There are many formerly “ridiculous theories” which now seem completely reasonable to explain the still-mostly unknown facts about the key background players in this charade, but it’s clearly about population control in both senses. Let us not forget that the Germans swiped their plans from AMERICAN eugenicists. We aren’t becoming LIKE the “Nazis.” We WERE the “Nazis” if you define them as globalist, racist, utopian, eugenicists who thought there were far too many of us useless eaters.
I highly recommend Viva Frei (Montreal lawyer David Freiheit) and civil rights attorney Robert Barnes on YouTube or locals dot com. They’re the only way I can keep up with the daily body blows.
“No Boots Left Behind” Cancer Clinic, for people unwilling to settle for less than a moon launch on the way out"
Our experience was so different but shared that same spirit of daring and urgency that a ticking time clock sets off. My hubby always burned the candle at both ends and joked he would sleep when he was dead while he was alive he was always finding time for fun. At 34 in peak health w NCAA sports & fitness was diagnosed w rare AML and given less than 10% chance of living more than 90 days. We got 7 years and an Odyssey I wouldn't wish on anyone or trade for the world w deep thanks to an incredible research team at Fred HUTCH who worked with us to accommodate the lifestyle choices and give patient autonomy the highest value. Also learned that for better or worse one in a million odds doesn't matter when you're the one.
It's wonderful to connect with so many others who have amazing and inspiring stories. "give patient autonomy the highest value" <---- That's what it's about! Robb did not completely reject every treatment offered but the problem is that you have to go through standard of care in order to get to a clinical trial with a therapy that might offer some hope. That's pretty difficult with GBM. At the time, I calculated the odds that he'd make it to be able to be placed in the treatment arm of anything worth trying was about 10%. I think Robb's surgeon gave him the first courage to reject conventional treatment (past surgery, which he did). She explicitly told him that radiation and chemotherapy would not cure and he would die. She also said that if she were to be diagnosed with it, she wouldn't do it. He was given 2 months without surgery and 6 months with. He did the surgery. Then we went to a Tijuana immunotherapy clinic 3 weeks later and he lived about 12 months past the first signs of the brain tumor. Pretty good! He actually worked throughout and was pretty much fully functional the vast majority of the time, despite the tumor being in one of the worst possible places (speech centers). It was an impressive result. The surgeon said the choices he'd made changed her thinking. When the second surgery was scheduled, the second surgeon who was brought in for it remembered the first surgery and said, "That guy is still alive??" The surgeon's secretary said she'd never seen a result like that in 15 years.
I can't imagine trying to find a research group we were just incredibly lucky there. Our son is a hemophiliac born at the end of the era of AIDS tainted blood & part of the single known donor program at Childrens hem/onc so we had a full blood history and a family of researchers than kinda plugged us in right away. Then our boy went into the recombinant clinical trial.. that works, unicorns everywhere! :~)
Wow. Yes! <3
And P.S. I'm beginning to understand the Pamela Drew that I see in OU... you and I have many similarities. ;)
No Boots, No Shoes, No Shirt, No Problem. Stories to tell. Maybe I’ll do the same someday. After “losing it all” (which really wasn’t it all) my wife and I took off in 2012 on our 35 foot sailboat to see the world at 6 knots. Besides each other it was all we had left. A 2015 Dx of Kappa Light Chain Disease (LCD-2000 cases a year) and the scheduling of radiation, then chemo, then a Bone Marrow Transplant kind of curtailed our plan. After considering the cost, statistics, and LTSR I opted out. I had already gone through the cancer mill at age 40, with a 30/70 LTSR and was already past my 20 years. Most of those I met along that journey were dead. 7 years later we are still living on the boat, the trip around the world now just a dream. The neuropathy from LCD makes long passages really hard. But we opted for a moon launch too and damned if the rocket is still in flight. Our sailboat is named Blessings. Karma? Perhaps it is.
Absolutely effin' brilliant! What an incredible story. What amazing people there are here in this community. It's like discovering a diamond in a haystack. I can't wait to sign up for your newsletter. There are so many inspiring people like you who can teach us how to LIVE! Last year I was feeling very confined, and I took sailing lessons at the urging of a dear friend after we'd corresponded and he'd told me about his 37 foot Fisher and all the adventures he dreamed of taking in it. (He also owns a Pacific Dolphin 24.) What a wonderful experience those sailing classes were! But I wanted to do it all myself, too, without the scheduling a crew requires. So I bought a small dinghy only 10 feet long in which I strapped my camping gear in dry bags and sailed to an island about 5 miles away when I had an excellent weather window. I camped there for 2 days and sailed back. An amazing memory I'll always have, and an amazing time. I had to sell the dinghy when I moved to the US, but I bought a different one (11 foot Minifish) which I have taken out a few times. Can't wait to keep doing it this summer.
Last item. Yes. Keep doing it. Nothing like it. We have sailed over 45,000 miles together and have owned a sailboat since 1982. Part of the reason why trying to determine what to do next is really a challenge!
Wow. Respect!
Monica that comment from CPJ is so amazing and spot-on that I must share it myself on my own newsletter. It fully encapsulates the pervasive unease I’ve felt about “modern medicine” and our unquestionable and absolute convictions that we are actually becoming healthier because of it - science and data confirming the falsity of those convictions be damned. Still, amidst this pandemic, friends ask me if I’ve had my yearly well check or some preventative check (that may or may not prevent anything) and I find myself faltering in how to answer. Because the answer is no. The answer is the distrust I used to have for our medical system has to turned to disdain. I’m happy we have access to life-saving emergency treatments, I am. But health is about so much more than seeing a doctor for a yearly well check (if it’s even about that at all). And the fact that most refuse to acknowledge or except that, confuses me the most.
From one confused, freedom-loving citizen to another, I look forward to following your journey.
Right on. I haven't been to a doctor in seven years, except to go to urgent care for a sinus infection in 2015. Lol.
I don't hate doctors. A very intelligent doctor once determined that no, I didn't have Chron's disease as I was catastrophizing. I just had a small hernia from lifting something too heavy in my 20s, it had been activated by inadvisable stomach exercises, and some lactose intolerance was causing my guts to push out into the space. The colonoscopy that told me I didn't have Chron's cleaned my intestines out enough that it eliminated the lactose intolerance. Problem solved.
Most doctors aren't as smart as that one, and why should I go if nothing is wrong with me? I admit I've been lucky to be remarkably healthy my entire life. When I began to suffer from a compressed disc in 2017 (not knowing then what it was), I tinkered with mineral intake and supplements. Not getting much relief I went to a chiropractor where the problem was diagnosed with an X ray, and I got nearly 90% instant relief from an adjustment. I was given tips on microscope and computer posture and walking. These and a mattress change, along with a few more months of chiro, fixed the problem 80%. What remained was further ameliorated by hormone replacement therapy. (I'm mid-40s.) Estrogen aids in rebuilding connective tissue.
What would have happened if I'd seen a doctor instead? Most likely I'd have been put on muscle relaxers or pain relievers and the problem would have continued to worsen until I needed surgery.
I'm the same. I don't go anywhere near a hospital if I can help it. To me, the issue with "modern medicine" is it would appear "modern" equates to pharmaceuticals. Doctors now treat symptoms, not problems. And it would appear the most pervasive way they treat those symptoms are with drugs. And therefore we don't get healthier. We just mask problems/disease. Don't get me wrong, there's a time and a place for drugs. But in our country (the U.S.) at least we've come to expect the necessity of them. To our greater detriment.
Chiropractors and functional medicine and holistic doctors look for root problems and attempt to solve those. To me, it appears clear that are doing it right. According to much of the civilized world, I am wrong. Worse, many in those industries are referred to as "quacks" or the "conspiracy theorists" of medicine.
Our medical model has gone completely astray. I dare say it's broken.
I aim to keep my stress levels way down and get more than enough sleep. That alone makes up for a lot that is lacking in other departments, in my experience.
CJP's comment is spot on. And I just fell in love with your late husband. Made me laugh and tear up. Wow. I'm working on giving my kids a Boots On childhood. I'm their mom; of course I want them to survive. But I'm on a mission to make sure they also live. The former is getting easier; the latter-- a huge challenge.
Being a parent in 2022 is an enormous challenge. Hats off.
Nicely presented and written.... thank you kindly. Dr Cris Angel (retired WA DOH Advisor and Acu-Eastern Medicine) Cheers...survived pancreatic cancer dx plus eight years.
!!
What a fun, wacky, and loving way to celebrate your deceased husband. When I am gone, I hope others might think of me in similar authentic, entertaining and full-of-life stories. This is a great challenge for me to think of authentic memories of both my parents and other loved family and friends who I miss greatly. Thanks
Hey thank you. My wife is a saint, which is the real reason we are still “out there.” She grew up on a boat. Taught me how to sail back in the late 70s. It’s at the point now that swallowing the hook and returning to land is the scariest decision we will face. It’s coming. But we keep postponing the inevitable as long as we can. Thx for the kind words.
Thank you! The humanity in these pieces is magnificent 👏👏👏
Beautiful tribute to your late husband Robb who lived and died with boots on! Thank you for sharing his writing, Monica. Thank you also for bringing attention to CPJ's comments. Both reminded me of Ernest Becker's Pulitzer prize winning book The Denial of Death. Becker's book helps to explain why people will cling to and defend a system that reduces death anxiety even when the cost is a full, boots on experience of life. For anyone interested, Glenn Hughes wrote a paper that captures the spirit of Ernest Becker's argument. It can be found here:
https://ernestbecker.org/becker-in-the-press-test-2/
Thank you so much for that link! I can see that it's one I'll need to sit down with, with a good cuppa. I look forward to reading it very soon. <3
Love this.
You may enjoy the book "What do you care about what other people think" - Richard Feynman. His first wife (and high-school sweetheart) died from an incurable form of tuberculosis, when she was only 25. Both of them took the last part of her life with similar spirit as you described here.
Great read. Lots to think about.
Clever, and full of the joy of life. Would I be labeled a bad person were I to admit I've dreamed of the Month Two Special Event? That I've often thought were I to have a certain death sentence cancer, I would go on a killing spree? That I've always quietly agreed with Bill Munny that some folks just need killin'? I think I would have enjoyed a few beers with your husband.
You probably would have.
Robb said of his own dad, “Someone should have taken a baseball bat to him out in the woods.” 😂
I think you may have a slight penchant for exaggeration, Don. As he did. Maybe an INTP thing. ;)
Lol. 98% of everything I say is true. The rest is to make the story flow better. Speaking of baseball bats, I've said of my own son, "I could hit that kid upside the head with a baseball bat and the lesson would only last until he regained consciousness."
How insanely true! Granny did not let children to hug her this Christmas again. She does not want "that" death. I asked why Alcheimer is better. And why she even thinks that she can choose.
Monica, thank you so much for quoting my comment and especially associating me (unjustifiably, for sure) with the indomitable spirit of your late husband. It sounds like he was quite the force of nature. I most certainly would have been thoroughly unable to keep up! Thanks also to the other kind comments below.
I took my cue from this and wrote a little more on my thinking in this regard over here. Although we all struggle with language, I must say it is also a playground of delight. So thank you also for encouraging me in that respect. Whether the world has anything from it I do not know, but I certainly needed it.
Much love.
https://anewearth.substack.com/p/religious-exemptions
Your husband was a hoot!
When my little brother was Dxed, I asked whether they’d told him the odds of survival if he went forward with having an avastin wafer put in his head (then an experimental treatment)?
He snorted with laughter. “Chance of death is always 100% on Planet Earth!”
Oh yeah, we none of us get outta here alive.
What I think has happened (I’ve stated this elsewhere) is that the people who called themselves “spiritual not religious” twenty years ago became “the nones” after their shocked parents had accepted that they’d abandoned their various religious patrimonies. But nature abhors a vacuum, and like secular Jews, cafeteria Catholics, and feel-good atheists who all celebrate a version of “American Christmas” regardless of no serious belief in a Deity, millions of us crave ritual and miss having an authority to whom we owe obedience.
Ireland’s Dave Cullen stated last year his adjunct theory that the first generations of day care kids (“latch key” kids) grew up in the habit of obedience to strangers who were not their parents, so when someone says “wear a mask” they don’t flinch or question. Was this noticed by “hidden” authorities-to-be and included in the plans of Event 201 and its earlier iterations?
Solzhenitsyn said that in the Gulag everyone speculated endlessly about how they should’ve resisted so that enforcers would’ve been more fearful and less willing to carry out unjust orders but everyone knew themselves to be innocent, so why fear the State, even if what the State demanded was patently unjust or outrageous? “It will all be straightened out…” as they were dragged away in the night.
We know that the doctors themselves are corrupted otherwise they’d be alarmed. The courts are corrupted and looking at shifts in political and public opinions and formerly ironclad rights are now discussed as malleable, so they’re unreliable, and it’s global, so where can you run, where can you hide? The “unvaxxed” are being scapegoated and systematically removed from society with the help of politicians (or because of their desires??), doctors, and even courts and religious leaders.
There are many formerly “ridiculous theories” which now seem completely reasonable to explain the still-mostly unknown facts about the key background players in this charade, but it’s clearly about population control in both senses. Let us not forget that the Germans swiped their plans from AMERICAN eugenicists. We aren’t becoming LIKE the “Nazis.” We WERE the “Nazis” if you define them as globalist, racist, utopian, eugenicists who thought there were far too many of us useless eaters.
I highly recommend Viva Frei (Montreal lawyer David Freiheit) and civil rights attorney Robert Barnes on YouTube or locals dot com. They’re the only way I can keep up with the daily body blows.