Hello from a Stage IV (my over-due, wayyyy over-long, opinionated intro)
Breeze_777
Member Posts: 1
Hi,
This is a lengthy, not very well-rounded and perhaps too opinionated first post, but I’ll justify it by saying I invested a lot of time reading Emily's deleted thread, and the article she linked to. ;-)
I was diagnosed with Stage IV colon cancer in 2007, with at least seven metastatic tumors in and on my liver. Yikes, where did all that come from... I wasn't even old enough for a colonoscopy!
To learn about my new life-with-a-death-sentence, I took to the internet and soon found this message board and read as much as I could absorb. I read Emily's posts, but at the time, I cavalierly dismissed "health food nuts" and conceitedly looked down on supplement-users as both the victims and purveyors of nonsensical, overpriced, unnecessary and possibly harmful pills. And besides, she was "only" stage III. I did not understand then how precarious it is to be at any stage of this disease, but over the years I have seen way too many I, II, and III'ers tip over into recurrent IV status. :-(
However, something in my subconscious took note of Emily's enthusiasm and healthy look, despite my haughty skepticism (and I really was/am a dreadful know-it-all!) and Scouty's posts gave "stage IV" credibility to a revamped lifestyle seeming to help one person (Scouty) keep cancer from destroying her life. And then, in the haze of treatment I lost track of this website, but didn't forget the hope and ideas of those "two chicks who did all that wacky stuff."
I read and read, asked questions, went to support groups and cancer conferences, listened and observed, wept for the losses of those I'd met in person and on-line, cheered the successes, and eventually realized that the ham-n-cheese on white bread, potato chips and Coke lunches I was being served during chemo might -- just might -- be having a negative impact on my overall health, and especially my dismally compromised immune system. A friend had been eating an extremely healthful diet of mostly raw foods for a while, and she looked fantastic, and was encouraging me to rethink my diet. So I figured "what do I have to lose, I'm a Stage IV goner, may as well try cutting out the cupcakes and Lebanon bologna just to see what happens!?" and made some changes, gradually felt better, had less nausea, and my blood counts stopped getting worse.
Writings by Doctors Meyerhardt, Lenz, Servan-Schreiber, and Block added sound, scientific and medical credibility to these new-to-me ideas. (see: http://www.lifeovercancerblog.com/)
My oncologist said, "whatever you're doing, keep it up!" Slowly, my mind opened and was less critical of integrative practices, and I am so, so, so glad for that!
I returned here briefly in 2010 (but soon after lost computer hard drive and all bookmarks) to see Emily and Scouty still calmly and tirelessly presenting the changes they'd made and how they deemed those changes helpful. I noted that other posters seemed more open to their ideas, (and John's) and that a few folks were trying to integrate healthier living with their treatments based, at least in part, on the experiences shared here.
I guess my point is, or points are:
-- The words written on these boards impact countless people who aren't participants, and perhaps in subtle ways that may take time to sink in. Messages of hope, survival, and the various methods people use to approach their diseases should be accepted, whether it's eating copius quantities of juices, raw organic broccoli, candy, or scarfing down Xeloda or doing several of these at once. (not including the occasional profiteering/spam posts.) If the person's pleased with the path he or she has chosen at that moment, then... great!
-- There’s a huge difference between “alternative vs. Western medicine” and “Integrative medicine.” The term “alternative” is a catch-all that includes everything from MD Anderson-recommended acupuncture to tin-foil hats, and thus is not very useful without additional parameters defined when it is being discussed.
-- If advice is asked for, then it should be given, and any adult using a message board should understand the difference between one person's anecdotal tale and a scientific conclusion based on documented research. If we can't relate our own stories, these boards wouldn't be nearly as interesting and informative.
-- My own anecdotal conclusion is that a diet comprised primarily of plant-based, unprocessed, uncooked foods has been a fascinating and delightful path to take, not at all expensive or restrictive, and I usually feel good after a day of positive nutrition, and when I eat factory-processed materials, especially sweets and grain products (i don't even think of that man-made crap as “food” anymore!) I usually, but not always, get bloated, bleary, and feel not-so-great. I used to get two nasty colds every winter without fail, and have had only ONE mild cold since 2007. I used to slather gobs of skin lotion on in a futile effort to combat dry, flaky skin, and would use up around four 16-20 ounce bottles every year, but now I need only about a daily quarter-teaspoon of raw coconut oil on my face and nothing else... nothing!! I love that!!
-- I have no idea what combination of surgery, 5-FU, Avastin, Oxaliplatin, diet, exercise, lessening stressors, tumor makeup, others’ prayers, and good old luck has helped (or hindered) the course of the cancer in me, but I am still here, so apparently something's going well. The liver tumors disappeared from sight without surgery. I'm NOT cancer-free and may soon need to suck up some more chemo and/or have exploratory surgery, but have enjoyed a lot of months (40, I think) without any treatment and for that I am quite grateful (and surprised).
-- I have derived a lot of knowledge, hope, ideas, sadness, insight, fear, optimism, and have seen so much compassion and love, as well as much bickering, on this board, and I hope to contribute my small bits of experience and support. From introspective essays, goofy humor, wry wisdom, and the incredible wealth of “been there, done that” advice and experience-sharing, this board is a tremendous resource, even to the lurkers. Even though it’s invisible, I bet there’s a heck of a lot of lurker vibes and prayers in addition to the posted ones whenever someone’s going through a tough patch. So, a big THANK YOU to those who take the time to post, from someone who doesn’t post much. (maybe that’s good, as you can see, I sure get wordy when i do post!!)
The fact that Emily felt like she had to delete her thread and profile page info is very troubling. I am not saying that to “take sides”, but because her experiences had a direct impact on some of my choices and subsequent (relative) well-being, despite her being staged differently than me, despite her treatment differing from mine, despite my not ever knowing or corresponding with her, despite my not-complete-agreement with some of her stated practices and beliefs, despite her disease make-up likely being very different from mine, and despite her being only one person and therefore not especially scientifically credible (although medical journals DO have numerous observational reports each detailing one person’s atypical presentations or responses) ...despite all that, her willingness to share (and repeat her tale so many times) helped me, and who knows how many others?
At least it inspired me to get off my butt and jot down this ramble and express some thoughts and appreciation!
This is a lengthy, not very well-rounded and perhaps too opinionated first post, but I’ll justify it by saying I invested a lot of time reading Emily's deleted thread, and the article she linked to. ;-)
I was diagnosed with Stage IV colon cancer in 2007, with at least seven metastatic tumors in and on my liver. Yikes, where did all that come from... I wasn't even old enough for a colonoscopy!
To learn about my new life-with-a-death-sentence, I took to the internet and soon found this message board and read as much as I could absorb. I read Emily's posts, but at the time, I cavalierly dismissed "health food nuts" and conceitedly looked down on supplement-users as both the victims and purveyors of nonsensical, overpriced, unnecessary and possibly harmful pills. And besides, she was "only" stage III. I did not understand then how precarious it is to be at any stage of this disease, but over the years I have seen way too many I, II, and III'ers tip over into recurrent IV status. :-(
However, something in my subconscious took note of Emily's enthusiasm and healthy look, despite my haughty skepticism (and I really was/am a dreadful know-it-all!) and Scouty's posts gave "stage IV" credibility to a revamped lifestyle seeming to help one person (Scouty) keep cancer from destroying her life. And then, in the haze of treatment I lost track of this website, but didn't forget the hope and ideas of those "two chicks who did all that wacky stuff."
I read and read, asked questions, went to support groups and cancer conferences, listened and observed, wept for the losses of those I'd met in person and on-line, cheered the successes, and eventually realized that the ham-n-cheese on white bread, potato chips and Coke lunches I was being served during chemo might -- just might -- be having a negative impact on my overall health, and especially my dismally compromised immune system. A friend had been eating an extremely healthful diet of mostly raw foods for a while, and she looked fantastic, and was encouraging me to rethink my diet. So I figured "what do I have to lose, I'm a Stage IV goner, may as well try cutting out the cupcakes and Lebanon bologna just to see what happens!?" and made some changes, gradually felt better, had less nausea, and my blood counts stopped getting worse.
Writings by Doctors Meyerhardt, Lenz, Servan-Schreiber, and Block added sound, scientific and medical credibility to these new-to-me ideas. (see: http://www.lifeovercancerblog.com/)
My oncologist said, "whatever you're doing, keep it up!" Slowly, my mind opened and was less critical of integrative practices, and I am so, so, so glad for that!
I returned here briefly in 2010 (but soon after lost computer hard drive and all bookmarks) to see Emily and Scouty still calmly and tirelessly presenting the changes they'd made and how they deemed those changes helpful. I noted that other posters seemed more open to their ideas, (and John's) and that a few folks were trying to integrate healthier living with their treatments based, at least in part, on the experiences shared here.
I guess my point is, or points are:
-- The words written on these boards impact countless people who aren't participants, and perhaps in subtle ways that may take time to sink in. Messages of hope, survival, and the various methods people use to approach their diseases should be accepted, whether it's eating copius quantities of juices, raw organic broccoli, candy, or scarfing down Xeloda or doing several of these at once. (not including the occasional profiteering/spam posts.) If the person's pleased with the path he or she has chosen at that moment, then... great!
-- There’s a huge difference between “alternative vs. Western medicine” and “Integrative medicine.” The term “alternative” is a catch-all that includes everything from MD Anderson-recommended acupuncture to tin-foil hats, and thus is not very useful without additional parameters defined when it is being discussed.
-- If advice is asked for, then it should be given, and any adult using a message board should understand the difference between one person's anecdotal tale and a scientific conclusion based on documented research. If we can't relate our own stories, these boards wouldn't be nearly as interesting and informative.
-- My own anecdotal conclusion is that a diet comprised primarily of plant-based, unprocessed, uncooked foods has been a fascinating and delightful path to take, not at all expensive or restrictive, and I usually feel good after a day of positive nutrition, and when I eat factory-processed materials, especially sweets and grain products (i don't even think of that man-made crap as “food” anymore!) I usually, but not always, get bloated, bleary, and feel not-so-great. I used to get two nasty colds every winter without fail, and have had only ONE mild cold since 2007. I used to slather gobs of skin lotion on in a futile effort to combat dry, flaky skin, and would use up around four 16-20 ounce bottles every year, but now I need only about a daily quarter-teaspoon of raw coconut oil on my face and nothing else... nothing!! I love that!!
-- I have no idea what combination of surgery, 5-FU, Avastin, Oxaliplatin, diet, exercise, lessening stressors, tumor makeup, others’ prayers, and good old luck has helped (or hindered) the course of the cancer in me, but I am still here, so apparently something's going well. The liver tumors disappeared from sight without surgery. I'm NOT cancer-free and may soon need to suck up some more chemo and/or have exploratory surgery, but have enjoyed a lot of months (40, I think) without any treatment and for that I am quite grateful (and surprised).
-- I have derived a lot of knowledge, hope, ideas, sadness, insight, fear, optimism, and have seen so much compassion and love, as well as much bickering, on this board, and I hope to contribute my small bits of experience and support. From introspective essays, goofy humor, wry wisdom, and the incredible wealth of “been there, done that” advice and experience-sharing, this board is a tremendous resource, even to the lurkers. Even though it’s invisible, I bet there’s a heck of a lot of lurker vibes and prayers in addition to the posted ones whenever someone’s going through a tough patch. So, a big THANK YOU to those who take the time to post, from someone who doesn’t post much. (maybe that’s good, as you can see, I sure get wordy when i do post!!)
The fact that Emily felt like she had to delete her thread and profile page info is very troubling. I am not saying that to “take sides”, but because her experiences had a direct impact on some of my choices and subsequent (relative) well-being, despite her being staged differently than me, despite her treatment differing from mine, despite my not ever knowing or corresponding with her, despite my not-complete-agreement with some of her stated practices and beliefs, despite her disease make-up likely being very different from mine, and despite her being only one person and therefore not especially scientifically credible (although medical journals DO have numerous observational reports each detailing one person’s atypical presentations or responses) ...despite all that, her willingness to share (and repeat her tale so many times) helped me, and who knows how many others?
At least it inspired me to get off my butt and jot down this ramble and express some thoughts and appreciation!
0
Comments
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Wow, that's such a lovelyBuckwirth said:Breeze
Welcome, and a very nice first post.
For the record, as the boards sometimes resident curmudgeon, I find nothing here to disagree with.
Wow, that's such a lovely way to introduce yourself. Please keep posting!!! After being in this battle for so many years obviously you have some valuable input to share too as to what works, what doesn't, ways to resolve some everyday issues that this disease presents us with.0 -
Awesome 1st post breeze,smokeyjoe said:Wow, that's such a lovely
Wow, that's such a lovely way to introduce yourself. Please keep posting!!! After being in this battle for so many years obviously you have some valuable input to share too as to what works, what doesn't, ways to resolve some everyday issues that this disease presents us with.
Awesome 1st post breeze, good read.0 -
Exceptionally articulate
Breeze,
Thank you for venturing out of the lurker's shadows to write such a beautiful post. Your honesty and integrity "tone" outshines any of the recent darkness created from the original thread that you reference.
It does my heart good to know that some tiny seed was planted that you cultivated, and that you are benefiting from the fruit of both our labors.
You bring such wisdom to the boards that I hope you will remain active in posting.
Your personal testimony has been priceless.
Thank you.
peace, emily0 -
Aloha
Thank you for introducing yourself with a lovely spirit of aloha. It is a pleasure to meet you Breeze.
Aloha,
Kathleen0 -
Welcome Breeze
I also use integrative therapy to live well with cancer (stage 4). I focus on five areas to stay as healthy as I can: functional (how supportive is my home and/or work front; basic needs taken care of?), physical (how fit am I? is my diet good?), pyschological (how is my mental status? ...I am working through PTS right now..), emotional (how am I able to maintain a positive outlook? what habits do I need to cultivate?), and spiritual (ultimately the basic question facing all of us inhabiting a body on the planet is about life and death: "birth has a poor prognosis").
I really, really wish there were a cure for cancer; I grieve for everyone we have lost here, for all the suffering we all go through; but right now there is no cure: western or eastern or whatever. Now remissions occur, cancer disappears, but no one can say for sure exactly why that occurs. One thing I do know is that if I pay attention to all the five areas above, my life goes well; which does not mean I don't spend a lot of time on the toilet at times, or deal with neuropathy, or face scanxiety, etc.
I, too, am extremely grateful for all the support, info, and loving care I have received on this message board. All in all, folks here get it about what this path of living with cancer is about. Heck love ya all so much am traveling to Chicago and CP-9 to meet a whole bunch of ya!
all the best, Leslie0 -
Hello,
This is my first post.Hello,
This is my first post. I'm researching on behalf of my mom whom is 75 years old. She just told me that her oncologist said she must have had the cancer 5-6 years and there are like 20 spots on her liver. Suffice to say I'm in a weird spot now and I want to be educated and learn as much as possible.
So Breeze, I hope this finds you well an want to ask how you are doing? Could you please share how changes with diet have been helping?
Many, many thanks in advance.
Darius
0 -
Hello,
This is my first post.Hello,
This is my first post. I'm researching on behalf of my mom whom is 75 years old. She just told me that her oncologist said she must have had the cancer 5-6 years and there are like 20 spots on her liver. Suffice to say I'm in a weird spot now and I want to be educated and learn as much as possible.
So Breeze, I hope this finds you well an want to ask how you are doing? Could you please share how changes with diet have been helping?
Many, many thanks in advance.
Darius
0 -
Hi Darius...dmojahed said:Hello,
This is my first post.Hello,
This is my first post. I'm researching on behalf of my mom whom is 75 years old. She just told me that her oncologist said she must have had the cancer 5-6 years and there are like 20 spots on her liver. Suffice to say I'm in a weird spot now and I want to be educated and learn as much as possible.
So Breeze, I hope this finds you well an want to ask how you are doing? Could you please share how changes with diet have been helping?
Many, many thanks in advance.
Darius
this post is unfortunately quite old, and the OP never posted again. If you copy your comments into a new post, I'm sure you'll get lots of folks responding who will be happy to help!
0
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