Reading Room - True Story - Washing for My Hero -(She decided not to have chemo.)
by William Thompson
Sylvia and I were at a very good point in our lives in November, 2004. Having just returned from my father’s funeral, we were proud of moving to El Paso, Texas and starting our own business so we could provide 24-hour care during his 2 years of illness.
Sylvia wrote poetry, and I was training to become a professional football scout, and playing guitar in a band in Dallas. We believed we’d made it through the most difficult part of our lives together and we were starting the best part.
That belief was extinguished on Sylvia’s birthday, February 2, 2005. A colonoscopy revealed a large mass. The doctor was sure it was malignant, and oncologists demanded chemotherapy and radiation immediately. Sylvia chose to wait until after surgery and diagnosis to devise a plan.
I was horrified at her decision, until learning that the chemo drug they recommended had no survivors past 18 months. After surgery, the biopsy revealed metastasis into her lymph nodes, classifying her late stage 3, to early stage 4. My head spinning, I had nowhere to turn, no one to ask – I couldn’t protect her from this Monster.
Sylvia wanted to write a book, but didn’t know if she’d have enough time. She didn’t want to be altered while writing, so decided not to have chemo. I supported her, staying strong on the outside, while panicking inside. She started immunotherapy, with diet, exercise, and meditation. One day, she showed me an invitation to Cancer as a Turning Point, in Greenville, SC, in June 2005, and asked if we could go.
We made the trip a vacation, visiting people she’d probably never see again. When we got to the conference, we felt welcomed and among friends. We even met some people who supported her decision, which was a first for us. I saw the strongest, most courageous people I had ever seen.
My definitions of strength and courage changed during the presentations of Annan Paterson, Terri Tate, and many others. We learned that for some people “fighting” cancer can drain all your energy.. I stopped trying to fight, and put that energy into making the “journey” as comfortable and pleasant as possible.
Sylvia was relieved I’d found a way to approach this, and concentrated on writing. In July, 2006, as she finished her book, In The Garden Of Illness: I Sit by the Well of Hope, 5 tumors were found in her liver. Still refusing chemo, she was given 6 months.
It wasn’t until September, 2007, that she went into Hospice here at the house. By November, her book was published and being promoted. Though mostly bedridden, she planned a book-signing on Jan.13, 2008. A friend took her to the signing because I wanted her to fully experience the limelight for herself. Having played professional football, I’m still recognized and I didn’t want any attention diverted from her. She returned tired, and I could tell she was excited to receive that recognition, even through the fatigue and painkillers. I was SO proud of her!
By her birthday, 2008, having survived twice the time she was expected to live if she had chemo, she was on the final stage of her journey. She was weak, leaving bed only to go to the bathroom, with me lifting her in my arms. When I’d say something funny only the corners of her mouth turned slightly up, but her eyes still shined, and I loved her 1,000 times more than ever. She was my hero.
On March 20, her breathing became labored. I told her that if she had to go, don’t worry about me, I’d be okay. I told her I loved her, and she barely whispered, “I love you.”
At 4:00 AM, I got into bed with her, held her hand, and fell asleep, exhausted. At 7:15 AM, March 21, I abruptly awoke.
I squeezed her warm hand, which was holding mine tightly. Her breathing was no longer labored and I softly called, “Honey?” No response. I noticed she wasn’t breathing at all. I felt her head, hands, feet; all still warm. Calling her name, and gently shaking her shoulder, it dawned on me – she’s gone. My tears fell on her face and nightgown. Putting my forehead against hers, I told her over and over that I loved her. My world stopped.
I can’t remember anything else that happened in 2008. I felt amputated, without legs, without arms. I knew she was counting on me to finish what we’d started, but I only left the house for necessities to stay alive, I didn’t want to be alive; I just wanted to be wherever she was, with her. This went on until late summer, 2009. No one was promoting the book and I had not played with the band since 2007.
On New Year’s Day, 2010, I resolved to her that I’d get moving. On her birthday, I told her I was going to celebrate, not mourn. Washing a load of clothes that morning, I remembered Sylvia teasing me that watching her husband wash clothes was the sexiest thing in the world.
I started laughing, and had feelings I hadn’t felt in almost two years. I washed five loads of clothes that day! I’m now determined to honor her memory by celebration, promoting her book, and playing my guitar again.
I have faith I’ll complete my “journey.” I have a tremendous role model in Sylvia Thompson, my wife, my all-time hero. I still use what I learned at Cancer as a Turning Point, in Greenville, 2005, applying those lessons to non-cancer situations as well.
Finally, I’ll say to anyone, you CAN overcome anything by keeping faith in yourself or those who have faith in YOU! Their support is there, whether they’re here or in the next realm; you’ll always feel their love. I won’t let my hero down! I’m going to wash a load of clothes now!
Bio: William Thompson was the caregiver for his wife, Sylvia, who died of colon cancer in 2008. He was an all-star football player at Texas A&M University in the mid-70’s. He played in the NFL, with New Orleans in 1977, and with Cleveland in 1978. He played guitar in the band, Dallas Air Posse, located in Arlington, TX. Their last CD was recorded in 2007.
Comments
-
curious
That is a very touching story Lizzy, thanks for sharing. However, I was puzzled by your mentioning (in your title) how she decided to not have chemo. Is there something you are trying to say? There are MANY wonderfull, touching, heart wrenching stories and books about cancer patients who did choose chemo and had the same end result proceeded by pain, suffering stress, anguish and feelings of hopelessness minus the peace, faith and acceptance of what life is. I wonder if you saw Sylvia's story the same way I did in the beauty of life and faith that doesn't involve statistics, and scans and prognoses. To chemo or not to chemo is always a touchy subject on here and I personally find it's use inconsistant at best and down right criminal at worst. I hope you are not offended by my post but I just wondered the intention of this particular story.
Chris0 -
No intention intended. Simply sharing a story.imagineit2010 said:curious
That is a very touching story Lizzy, thanks for sharing. However, I was puzzled by your mentioning (in your title) how she decided to not have chemo. Is there something you are trying to say? There are MANY wonderfull, touching, heart wrenching stories and books about cancer patients who did choose chemo and had the same end result proceeded by pain, suffering stress, anguish and feelings of hopelessness minus the peace, faith and acceptance of what life is. I wonder if you saw Sylvia's story the same way I did in the beauty of life and faith that doesn't involve statistics, and scans and prognoses. To chemo or not to chemo is always a touchy subject on here and I personally find it's use inconsistant at best and down right criminal at worst. I hope you are not offended by my post but I just wondered the intention of this particular story.
Chris
No intention intended. Simply sharing a story.0 -
Google her bookimagineit2010 said:curious
That is a very touching story Lizzy, thanks for sharing. However, I was puzzled by your mentioning (in your title) how she decided to not have chemo. Is there something you are trying to say? There are MANY wonderfull, touching, heart wrenching stories and books about cancer patients who did choose chemo and had the same end result proceeded by pain, suffering stress, anguish and feelings of hopelessness minus the peace, faith and acceptance of what life is. I wonder if you saw Sylvia's story the same way I did in the beauty of life and faith that doesn't involve statistics, and scans and prognoses. To chemo or not to chemo is always a touchy subject on here and I personally find it's use inconsistant at best and down right criminal at worst. I hope you are not offended by my post but I just wondered the intention of this particular story.
Chris
"The Garden Of Illness: I Sit by the Well of Hope".
There's more info about her:
"Diagnosed with advanced colon cancer on her birthday in 2005, Sylvia Thompson discovered the healing power of creative writing through her illness. She teaches meditation, Reiki, Chakra and Color Therapy and takes part in a women’s Kabbalah study group in her community."
She doesn't strike me as someone who would want to have anything to do with chemo at all.
It's certainly NOT for everybody.0 -
To mePGLGreg said:Heroine?
So she refused treatment for cancer and then died. It seems less like heroism and more like stupidity. I must be missing something.
--Greg
it seems like suffering for one's art. She seemed to be deeply invested in a holistic approach to life.
She wrote this poem:
ENLIGHTENMENT
I prayed to the Heavens
for a great teacher
dignifying, enlightening and steady.
With desperate pleas,
in silent conveyance,
that I, the student, was ready.
And so the heavens,
obliged to my need,
sent a great teacher
to answer.
When I asked him his name,
he smiled at me warmly,
bowed down to me
and said:
CANCER.
It's hard to get more personal with one's self than having cancer and deciding how you accept it.
I kind of like this poem, cancer is a great teacher. The story can have several endings too depending on what we learn from our experience with it.
Overall I don't see her choice as being particularity heroic either Greg but there is a lot in art (and life) that I do not understand. I do not know her reasons for her decision other than part of it being financial as I read in one link I found about her. She said something about having to sell a lot of books or poems to pay for her medical bills.
Sometimes a cigar is just a cigar...
-p0 -
Thanks Lizzyimagineit2010 said:curious
That is a very touching story Lizzy, thanks for sharing. However, I was puzzled by your mentioning (in your title) how she decided to not have chemo. Is there something you are trying to say? There are MANY wonderfull, touching, heart wrenching stories and books about cancer patients who did choose chemo and had the same end result proceeded by pain, suffering stress, anguish and feelings of hopelessness minus the peace, faith and acceptance of what life is. I wonder if you saw Sylvia's story the same way I did in the beauty of life and faith that doesn't involve statistics, and scans and prognoses. To chemo or not to chemo is always a touchy subject on here and I personally find it's use inconsistant at best and down right criminal at worst. I hope you are not offended by my post but I just wondered the intention of this particular story.
Chris
Thanks for the heart-warming story Lizzy. It's a good story.
Rob; in Vancouver0 -
Greg -PGLGreg said:Heroine?
So she refused treatment for cancer and then died. It seems less like heroism and more like stupidity. I must be missing something.
--Greg
Greg -
Yes......
"to chemo or not to chemo" is indeed a very touchy subject, and
not just around here, but anyplace frightened cancer victims are.
I think you missed part of the story that explains best, the jest of
the story, and the bases of Sylvia's decision:
Her husband stated:
"I was horrified at her decision, until learning that the chemo
drug they recommended had no survivors past 18 months. "
Sylvia lived longer without the chemo, than the chemo would have normally allowed.
"By her birthday, 2008, having survived twice the time she was expected
to live if she had chemo, she was on the final stage of her journey. "
"Feeling stupid" isn't something anyone desires to feel in making a decision
of any type.
"Stupid" isn't something that any of us desire to be thought of, for using our
own judgement regarding what's best for us or our loved ones.
The decision to take a route that is different than the majority's route, is always
a tough decision, and one that doesn't come easy. Making a life or death decision
takes courage; having to make it knowing that you'll be called "stupid" if it fails,
makes one's decision making even more difficult.
Chemotherapy and radiation treatments have a high failure rate, but no-one
should be thought of as being "stupid" for giving it a try.
Likewise, many of us are still here after being told that chemo was our only
chance for survival, and yet..... we've survived better than anyone had expected,
and well beyond our grim prognosis even if we had chosen chemo.
There are many of us that use and have used alternative methods in an attempt
to stay alive. The choice was very, very difficult, and the stakes high for each
and every one of us.
We went our path amid criticism from friends, family, and physicians,
all that had said they only had our well being at heart.
Among us are survivors that have endured the wrath of comments and insults,
but not once have we had to endure the wrath of side effects and neurological
problems, or second cancers caused by what we thought would help us.
Please try to be careful with your use of the word "stupid".
John0 -
No such drug.John23 said:Greg -
Greg -
Yes......
"to chemo or not to chemo" is indeed a very touchy subject, and
not just around here, but anyplace frightened cancer victims are.
I think you missed part of the story that explains best, the jest of
the story, and the bases of Sylvia's decision:
Her husband stated:
"I was horrified at her decision, until learning that the chemo
drug they recommended had no survivors past 18 months. "
Sylvia lived longer without the chemo, than the chemo would have normally allowed.
"By her birthday, 2008, having survived twice the time she was expected
to live if she had chemo, she was on the final stage of her journey. "
"Feeling stupid" isn't something anyone desires to feel in making a decision
of any type.
"Stupid" isn't something that any of us desire to be thought of, for using our
own judgement regarding what's best for us or our loved ones.
The decision to take a route that is different than the majority's route, is always
a tough decision, and one that doesn't come easy. Making a life or death decision
takes courage; having to make it knowing that you'll be called "stupid" if it fails,
makes one's decision making even more difficult.
Chemotherapy and radiation treatments have a high failure rate, but no-one
should be thought of as being "stupid" for giving it a try.
Likewise, many of us are still here after being told that chemo was our only
chance for survival, and yet..... we've survived better than anyone had expected,
and well beyond our grim prognosis even if we had chosen chemo.
There are many of us that use and have used alternative methods in an attempt
to stay alive. The choice was very, very difficult, and the stakes high for each
and every one of us.
We went our path amid criticism from friends, family, and physicians,
all that had said they only had our well being at heart.
Among us are survivors that have endured the wrath of comments and insults,
but not once have we had to endure the wrath of side effects and neurological
problems, or second cancers caused by what we thought would help us.
Please try to be careful with your use of the word "stupid".
John
I noticed that, John, but we both know that is nonsense. There is no chemo drug that kills everyone who takes it within 18 months.
--Greg0 -
I really wondered about thatPGLGreg said:No such drug.
I noticed that, John, but we both know that is nonsense. There is no chemo drug that kills everyone who takes it within 18 months.
--Greg
I really wondered about that statement also. For a stage III patient, I don't know of any stats that say you would only live 18 months on any of the chemo options.
But we don't have any guarantees that chemo will work, and in most cases it does cause a lot of side effects, and takes away quality of life - if not permanently, at least temporarily. If someone doesn't think they have it in them to go through chemo, or just don't want the inconveniences of it, or don't want the risk of the side effects, then it makes sense to try an alternate route. Most stats do point to chemo increasing the odds of survival. But there are also the stats that show survival rates for those that do not choose chemo - not as high, but plenty do make it. We never know if surgery got all the cancer cells out or not. If there was no lymph involvement and surgery removed it all, chemo is unneccessary. But we never know if we got them all out or not. When it is in the lymphatic system, there is a good chance that surgery alone didn't get them all. With all the research I've done, for me personally I believe that in most advanced cases, a combo of Western and Eastern medicine, and other complimentary treatments give the best chances for survival. But that doesn't mean someone can't choose just one or the other. Not choosing chemo doesn't mean you will die, just as choosing it doesn't mean you will die.
Everyone has to make their own decision.
I do not see her decision as heroic. I do not see it as stupid. But I do see the statement of a chemo drug killing you within 18 months as stupid.0 -
here we go....PGLGreg said:No such drug.
I noticed that, John, but we both know that is nonsense. There is no chemo drug that kills everyone who takes it within 18 months.
--Greg
This disscussion always has the potential to become very heated and I for one am feeling warm. Most people on here have the best of intentions with advise and comforting wishes. Some on the other hand seem to enjoy the occassional debate. We as a whole can agree that people see and hear what they want. So it is unlikely that someone is going to change anothers mind over something as personal as Man vs Medicine. First the obvious. This woman took her doctors words for the truth, "with chemo she likely won't live past 18 months". Not that it would kill her in 18 months but that's the most she would get. Knowing ANYTHING about chemo, who WOULD do that route? Let's see, 18 months of pain, suffering, vomiting, losing hair, neuropathy, fatigue, diarrhea, skin rashes, weight loss, and who knows what else. Or BOX #2, the unkown. If that was my choice, I'll take #2. People on here are ALWAYS told to trust your Oncologist. Unless they say something you don't agree with. Onc. says "stop chemo" people here say "get a second opinion". Onc says "we've done all we can" people here say "he's giving up, get a second opinion". Onc says "with 6 months of chemo we can fix you" people here say "trust him he's great". Onc says "we got it all but you should take MORE chemo, just in case" people here say "trust him, don't take a chance they missed any". You can't have it both ways... This back and forth reasoning is frustrating to anyone wanting real non-subjective advise. Secondly, just where do these statistics come from that use numbers from people who did not take chemo? I wonder if anyone on here who did not take chemo was ever questioned or polled. How does an oncologist know if you went somewhere else for treatment or did no treatment? If you aren't in the system where are they getting their facts? Are there THAT many people not taking chemo to find for studies? I think not...
Plus, remember when someone is given a poor prognosis and all the times people here say "don't trust statistics"? Yea, then they fire them out when talking about how beneficial chemo and radiation are. Can't have it both ways.......
Sorry, just my opinion.....0 -
Some confusion?PGLGreg said:No such drug.
I noticed that, John, but we both know that is nonsense. There is no chemo drug that kills everyone who takes it within 18 months.
--Greg
Her husband said:
"I was horrified at her decision, until learning that the chemo
drug they recommended had no survivors past 18 months."
He did not say that the chemo would have killed her, he said
that he was made aware that those with that type and grade of
cancer had an 18 month survival rate, even if taking that treatment.
Or more simply.... if she took the treatments, her prognosis
would have been around 18 months. He didn't mention what
her prognosis would have been if she declined treatment.
My doctors told me that 3-5 years was average for my grade
of cancer with chemo, and if I didn't do chemo, all bets were off.
I had colon cancer with 7 nodes out of 20+, tumor invasion into the
adjoining colon, high grade cells.... and a real bleak prognosis.
No prognosis is a prophesy; no physician, friend, spouse, clergy,
or talking horse can predict our future. But we can see and hear of
other individuals with similar problems, and we can see and hear of
their progress or lack of progress, and we can understand accurate
data representing case histories.
As living creatures, we can absorb that data and use it to bolster our
own intellectual ability to hopefully choose a course that will satisfy
our need to stay alive.
I don't blame anyone for choosing to go the "mainstream route".
And I certainly don't feel anyone is foolish or stupid for taking -any-
route they choose that they feel may cure them.
It does break my heart, though.... to read of so, so many cancer
victims that are so afraid of trying something other than what they
have been using when their condition is worsening. The route they're
on is obviously leading to a dead-end, but they continue to try
more of the same stuff. And even more saddening, is the fact they
are encouraged to do so by so many well meaning individuals.
If your car wasn't running right after each visit to the same repair shop
it ran worse and worse, would you continue going to the same repair shop?
If a brand of gasoline made your car run lousy, would you continue
buying that brand?
If my route was failing me, I would consider chemo, radiation, juicing,
or any other route that may offer me better results.
The fear of dying shouldn't cause one to have tunnel vision at a time
when it's necessary to have wide angle perspective.
There are many very, very valid options and alternatives to chemical therapy.
And by the way..... some of those alternatives are recently being explored
by western medicine's gurus..
"Immunotherapy"..... gee, what a remarkable modern-day invention.
</sarcasm>
I hope we all find better health!
John0 -
How sincerity guarantees wisdom.John23 said:Some confusion?
Her husband said:
"I was horrified at her decision, until learning that the chemo
drug they recommended had no survivors past 18 months."
He did not say that the chemo would have killed her, he said
that he was made aware that those with that type and grade of
cancer had an 18 month survival rate, even if taking that treatment.
Or more simply.... if she took the treatments, her prognosis
would have been around 18 months. He didn't mention what
her prognosis would have been if she declined treatment.
My doctors told me that 3-5 years was average for my grade
of cancer with chemo, and if I didn't do chemo, all bets were off.
I had colon cancer with 7 nodes out of 20+, tumor invasion into the
adjoining colon, high grade cells.... and a real bleak prognosis.
No prognosis is a prophesy; no physician, friend, spouse, clergy,
or talking horse can predict our future. But we can see and hear of
other individuals with similar problems, and we can see and hear of
their progress or lack of progress, and we can understand accurate
data representing case histories.
As living creatures, we can absorb that data and use it to bolster our
own intellectual ability to hopefully choose a course that will satisfy
our need to stay alive.
I don't blame anyone for choosing to go the "mainstream route".
And I certainly don't feel anyone is foolish or stupid for taking -any-
route they choose that they feel may cure them.
It does break my heart, though.... to read of so, so many cancer
victims that are so afraid of trying something other than what they
have been using when their condition is worsening. The route they're
on is obviously leading to a dead-end, but they continue to try
more of the same stuff. And even more saddening, is the fact they
are encouraged to do so by so many well meaning individuals.
If your car wasn't running right after each visit to the same repair shop
it ran worse and worse, would you continue going to the same repair shop?
If a brand of gasoline made your car run lousy, would you continue
buying that brand?
If my route was failing me, I would consider chemo, radiation, juicing,
or any other route that may offer me better results.
The fear of dying shouldn't cause one to have tunnel vision at a time
when it's necessary to have wide angle perspective.
There are many very, very valid options and alternatives to chemical therapy.
And by the way..... some of those alternatives are recently being explored
by western medicine's gurus..
"Immunotherapy"..... gee, what a remarkable modern-day invention.
</sarcasm>
I hope we all find better health!
John
John writes: "And I certainly don't feel anyone is foolish or stupid for taking -any- route they choose that they feel may cure them."
Really, John?0 -
Lizzy
Lizzy,
Thanks for sharing that story. It sounds like they had a special love and a beautiful way of experiencing life.
Aloha,
Kathleen0 -
chemo drugPGLGreg said:No such drug.
I noticed that, John, but we both know that is nonsense. There is no chemo drug that kills everyone who takes it within 18 months.
--Greg
Greg, I, also, have never heard of a chemo drug that kills everyone who uses it within 18 months. Les not forget they are selling a book here. If this were told to George, I don't think we would have used that chemo drug either.
And Lizzie, thank you for posting such a warm story. Sometimes we need to be remined what works for one may not necessarily work for another.
Tina0 -
Thanks Lizzy -lizzydavis said:No intention intended. Simply sharing a story.
No intention intended. Simply sharing a story.
A wonderful story, thanks for sharing.
Tina0 -
"To each his own".....Kathleen808 said:Lizzy
Lizzy,
Thanks for sharing that story. It sounds like they had a special love and a beautiful way of experiencing life.
Aloha,
Kathleen
Whatever route one takes is one's own business as its your life you're living and hoping to maintain. Couldn't care less what anyone says about my Tx if I feel my decision was based upon what I felt was best for me.Can't explain why but I trusted my team of docs when I first met them, two younger than me women and one older than me man.Had asked onc to modify postop chemo as it was getting to me too severely; guess I'm not as strong as those who took full doseage but sobeit. As everyone's cancer/tumor is different and as consequently, each responds differently to identical treatment, what works for you may not work for me.
Likewise, to chemo or not; to TCM or not; to juice or not' to pray or not is all an individual decision.Criticizing/judging another for that person's choice of care is not my business. The wife in this instance above probably had a better quality of life with her husband than she may have had with treatment, which may have extended the quantity but not the quality of her life. Either way, it was HER CHOICE (with her husband's input I'm sure)......steve0
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