The interest in this blog has been remarkable. Thank you to everyone who has written encouraging emails to me. Several people have asked why I haven’t written anything since it’s about me. Well actually, this blog is not about me, but about our joint search for the solution to a problem I share with 1 out of 4 people in the United States.
Is that statistic mind-boggling? Look around you in the grocery store the next time you’re there and realize that every 4th person you see has or will be likely to have cancer. And another statistic that is both infuriating and enlightening: there are more people employed by the cancer industry than are being treated by it on a given day. As Joe said earlier, the cancer business is about treating patients, not curing them.
My acquaintance with cancer did not being lately. My father was diagnosed with lyposarcoma (a very rare type of cancer that I always suspected was related to his military service) at the age of 52. He had no reason to doubt the local doctor who recommended surgery and chemotherapy . That was the beginning of a seven-year nightmare. The surgery “successfully” removed the tumor from above his left knee. Then for the first week of every month for the next nine he and my mom drove to Houston (from West Texas) to have chemo treatments. The second week (and often most of the rest of the month) he would spend in the local hospital recovering from pneumonia or a bladder infection. Oh, right…the doctors knew the chemo would compromise his immune system but that’s just one of the side effects.
On the first year’s anniversary he was declared to be “in remission” and we thought the battle was over. His hair grew back. We celebrated the first time he needed to shave again. He started gaining weight. For a few months anyway. Then, for no apparent reason, he started losing weight again. Still had a good appetite, still eating well, still losing weight. So back to the doctor for the disheartening news that the cancer was back. Not just one tumor like they successfully removed but several now. Still, the doctors said these looked like good candidates for more chemo and then what was left could be easily handled with surgery.
After only two months of chemo this time, he was too weak to continue. Well, that was okay because there was a “good chance” that radiation treatments would be just as successful and so began another year of trips to Houston. At least with the radiation he seemed to have fewer infections. Until ulcerating sores began to appear where the skin had been burned. We wondered to ourselves if there were similar injuries to the internal organs as well, but of course, we only got the “party line” from the doctors: he was responding as expected.
Two surgeries followed, and then another few months where the blood work and other labs came back “normal” and we let our hopes build again. Then he began having unexplained pain in his neck and shoulders. He had injured his back about 20 years before and thought it was just something related to that old injury, but after x-rays, it appeared that the cancer was back. This time in his spine.
He was in Houston again undergoing chemotherapy when he celebrated his 5th anniversary from the official diagnosis. In cancer-speak, he was a SUCCESS! A five-year survivor! My sister was a junior in high school and I was a senior. We were both working after school and trying to keep things as comfortable for my dad as possible. Teri had always thought she wanted to be a nurse and these years just intensified her determination to learn how to care for the sick. (This was probably also the germ of my still unfulfilled dream of becoming a lawyer!)
Finally, there seemed to be no solution other than surgery on his spine. The outcome was almost certain: he would be paralyzed. My folks had spent every dollar they had worked for and saved for 30 years to “beat” his cancer. When the money ran out, M.D. Anderson ran out of ways to help them and referred him to the V.A. since he was a veteran. That at least was one good decision. They gave him excellent care. He volunteered for every pilot project and clinical trial they came up with. Some seemed silly. Some were painful. When we asked him why he was doing that he said, “I know none of this will help me but they may learn something that will help someone else.”
About a week before Christmas, he was in such good spirits and looked much better than he had for weeks. We took a family picture in his hospital room. Looking at that picture now, I can’t imagine that we thought he looked good…he was little more than an animated cadaver. The next day he went into a coma and died the day before Christmas Eve. He was a good, brave man. He trusted the experts. We all did. After all, his was one of the success stories…we had the FIVE YEAR SURVIVOR banner to prove it. It just seemed so wrong.
My mom recovered and made a new life for herself. My sister finished nursing school and got married. I worked and took college classes as time and money allowed. Life went on. I was divorced and my sister and her 4-year old son moved back to Lubbock after her divorce. After I remarried my nephew lived with us for a few years while my sister worked double shifts at the hospital. Her passion for healing never waned. Those were happy years for the most part. My mom had some heart problems but seemed to be doing well with the angioplasty therapy the doctors were using. Then the news that she had cancer.
Long story short…another five year survivor who died after all the “right” decisions about chemo, surgery and radiation. Years of misery and finally penury. I was determined right then that if ever I was diagnosed with cancer I would die from the cancer but never from cancer treatment. I would never have a drop of chemotherapy, never have one radiation treatment. If someone could convince me that surgery alone would be effective (not “successful”) I might consider that. And it was about this time that I met Joe.
Beginning in my twenties, I had recurring bouts of mastitis and fibroid cysts. After a needle biopsy for a suspicious tumor showed “nothing to worry about” I decided that was exactly what I would do. Not worry about getting cancer. Live my life without that cold hand always on my shoulder. And even after I suspected that the “no worries” place was different now, I knew that I was even more determined to embrace the cancer if that’s what it was rather than embrace the medical establishment’s line of “therapy” which was mostly unchanged (and no more effective) since my dad was diagnosed 40 years ago.
But Joe began investigating alternative therapies. As we read, some sounded very familiar…in fact some were the very “experimental” treatments my dad underwent at the V.A. How strange that none of those were part of the “new” medicine. Actually, not strange at all when you consider that none of them were patentable and most were not all that expensive (lucrative from the other side of the desk). But knowing that the established cancer treatment trinity of chemo, surgery and radiation has at best about a 3 percent cure rate (not the bogus “5-year survivor” crap they throw out as success) , we put together our own treatment plan.
So, there you have the back story for this adventure. We are expecting a good outcome but it will be a long road. Actually, the road would be long no matter which fork we decided to take. But at least this way I have a functioning immune system to fight with and a host of friends and family pulling along with us. Thanks to all of you for your continuing support!
Is that statistic mind-boggling? Look around you in the grocery store the next time you’re there and realize that every 4th person you see has or will be likely to have cancer. And another statistic that is both infuriating and enlightening: there are more people employed by the cancer industry than are being treated by it on a given day. As Joe said earlier, the cancer business is about treating patients, not curing them.
My acquaintance with cancer did not being lately. My father was diagnosed with lyposarcoma (a very rare type of cancer that I always suspected was related to his military service) at the age of 52. He had no reason to doubt the local doctor who recommended surgery and chemotherapy . That was the beginning of a seven-year nightmare. The surgery “successfully” removed the tumor from above his left knee. Then for the first week of every month for the next nine he and my mom drove to Houston (from West Texas) to have chemo treatments. The second week (and often most of the rest of the month) he would spend in the local hospital recovering from pneumonia or a bladder infection. Oh, right…the doctors knew the chemo would compromise his immune system but that’s just one of the side effects.
On the first year’s anniversary he was declared to be “in remission” and we thought the battle was over. His hair grew back. We celebrated the first time he needed to shave again. He started gaining weight. For a few months anyway. Then, for no apparent reason, he started losing weight again. Still had a good appetite, still eating well, still losing weight. So back to the doctor for the disheartening news that the cancer was back. Not just one tumor like they successfully removed but several now. Still, the doctors said these looked like good candidates for more chemo and then what was left could be easily handled with surgery.
After only two months of chemo this time, he was too weak to continue. Well, that was okay because there was a “good chance” that radiation treatments would be just as successful and so began another year of trips to Houston. At least with the radiation he seemed to have fewer infections. Until ulcerating sores began to appear where the skin had been burned. We wondered to ourselves if there were similar injuries to the internal organs as well, but of course, we only got the “party line” from the doctors: he was responding as expected.
Two surgeries followed, and then another few months where the blood work and other labs came back “normal” and we let our hopes build again. Then he began having unexplained pain in his neck and shoulders. He had injured his back about 20 years before and thought it was just something related to that old injury, but after x-rays, it appeared that the cancer was back. This time in his spine.
He was in Houston again undergoing chemotherapy when he celebrated his 5th anniversary from the official diagnosis. In cancer-speak, he was a SUCCESS! A five-year survivor! My sister was a junior in high school and I was a senior. We were both working after school and trying to keep things as comfortable for my dad as possible. Teri had always thought she wanted to be a nurse and these years just intensified her determination to learn how to care for the sick. (This was probably also the germ of my still unfulfilled dream of becoming a lawyer!)
Finally, there seemed to be no solution other than surgery on his spine. The outcome was almost certain: he would be paralyzed. My folks had spent every dollar they had worked for and saved for 30 years to “beat” his cancer. When the money ran out, M.D. Anderson ran out of ways to help them and referred him to the V.A. since he was a veteran. That at least was one good decision. They gave him excellent care. He volunteered for every pilot project and clinical trial they came up with. Some seemed silly. Some were painful. When we asked him why he was doing that he said, “I know none of this will help me but they may learn something that will help someone else.”
About a week before Christmas, he was in such good spirits and looked much better than he had for weeks. We took a family picture in his hospital room. Looking at that picture now, I can’t imagine that we thought he looked good…he was little more than an animated cadaver. The next day he went into a coma and died the day before Christmas Eve. He was a good, brave man. He trusted the experts. We all did. After all, his was one of the success stories…we had the FIVE YEAR SURVIVOR banner to prove it. It just seemed so wrong.
My mom recovered and made a new life for herself. My sister finished nursing school and got married. I worked and took college classes as time and money allowed. Life went on. I was divorced and my sister and her 4-year old son moved back to Lubbock after her divorce. After I remarried my nephew lived with us for a few years while my sister worked double shifts at the hospital. Her passion for healing never waned. Those were happy years for the most part. My mom had some heart problems but seemed to be doing well with the angioplasty therapy the doctors were using. Then the news that she had cancer.
Long story short…another five year survivor who died after all the “right” decisions about chemo, surgery and radiation. Years of misery and finally penury. I was determined right then that if ever I was diagnosed with cancer I would die from the cancer but never from cancer treatment. I would never have a drop of chemotherapy, never have one radiation treatment. If someone could convince me that surgery alone would be effective (not “successful”) I might consider that. And it was about this time that I met Joe.
Beginning in my twenties, I had recurring bouts of mastitis and fibroid cysts. After a needle biopsy for a suspicious tumor showed “nothing to worry about” I decided that was exactly what I would do. Not worry about getting cancer. Live my life without that cold hand always on my shoulder. And even after I suspected that the “no worries” place was different now, I knew that I was even more determined to embrace the cancer if that’s what it was rather than embrace the medical establishment’s line of “therapy” which was mostly unchanged (and no more effective) since my dad was diagnosed 40 years ago.
But Joe began investigating alternative therapies. As we read, some sounded very familiar…in fact some were the very “experimental” treatments my dad underwent at the V.A. How strange that none of those were part of the “new” medicine. Actually, not strange at all when you consider that none of them were patentable and most were not all that expensive (lucrative from the other side of the desk). But knowing that the established cancer treatment trinity of chemo, surgery and radiation has at best about a 3 percent cure rate (not the bogus “5-year survivor” crap they throw out as success) , we put together our own treatment plan.
So, there you have the back story for this adventure. We are expecting a good outcome but it will be a long road. Actually, the road would be long no matter which fork we decided to take. But at least this way I have a functioning immune system to fight with and a host of friends and family pulling along with us. Thanks to all of you for your continuing support!
Thanks, Beck, for fighting for all of us. Being a medical pioneer is not an easy thing to do.
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