I'm inspired by the biological scientist Stephen Jay Gould who was diagnosed with a rare cancer that had a median survival of 8 months. He decided he was going to be in the tail end of the curve... living beyond the 8 months. He died 20 years later of another disease. He had one of the most admirable scientific careers of his era. He lived thirty times longer than the oncologists had predicted. THIRTY TIMES LONGER.
Anything is possible. Everything is possible.
Thursday, May 27, 2010
I am reading, among other things, Anti Cancer by David Servan-Scheiber.
At the end of one of the early chapters he talks how in Chinese, the notion of "crisis" is written as a combination of the two characters "danger" and "opportunity." Cancers threat can make it hard to grasp its creative potential.
He says, for him, his illness changed his life for the better, and in a way he never could have imagined, previously to being diagnosed.
I'd like to say the same thing. And I think I can.
Monday, April 19, 2010
#15: Make the most of your medical appointments
A wise patient brings a list of questions to almost every medical appointment.
#14 Overcoming Fatigue and Nausea
Exercise has been found to treat fatigue and ensure a more restful sleep.
Studies have also shown ginseng to be helpful for cancer patients suffering from fatigue.
I was taking ginseng for a while. I think I may start supplementing it again.
I haven't had too many issues with nausea. Thankfully.
Studies have also shown ginseng to be helpful for cancer patients suffering from fatigue.
I was taking ginseng for a while. I think I may start supplementing it again.
I haven't had too many issues with nausea. Thankfully.
Tuesday, April 13, 2010
Thoughts from Siegel's book
"Love of other people always is a sustaining factor. In a sense, however, living for others is a "gimmick", a stopgap measure like surgery or chemotherapy, which can buy time until people learn to live authentically for themselves."
I know I am learning and growing so much right now. I am pursuing wellness; not just of my body, but my mind and spirit as well. I am being stretched beyond all my comforts and past everything I feel capable of. And I will get there.
That quote resonates with me. Because even some of my prayers have been not to die to spare others the grief, or so that I can keep loving them and caring for them... I know I need to learn to live for me. And I will.
I talked about this quote elsewhere, but it captures the sentiment I am feeling now so well:
"When the imitation of Christ does not mean to live a life like Christ, but to live your life as authentically as Christ lived his, then there are many ways and forms in which a man can be a Christian." H. J. M. Nouwen
I know I am learning and growing so much right now. I am pursuing wellness; not just of my body, but my mind and spirit as well. I am being stretched beyond all my comforts and past everything I feel capable of. And I will get there.
That quote resonates with me. Because even some of my prayers have been not to die to spare others the grief, or so that I can keep loving them and caring for them... I know I need to learn to live for me. And I will.
I talked about this quote elsewhere, but it captures the sentiment I am feeling now so well:
"When the imitation of Christ does not mean to live a life like Christ, but to live your life as authentically as Christ lived his, then there are many ways and forms in which a man can be a Christian." H. J. M. Nouwen
HOPE
Hope is the thing with feathers
That perches in the soul,
And sings the tune without words,
And never stops at all.
Emily Dickinson
That perches in the soul,
And sings the tune without words,
And never stops at all.
Emily Dickinson
Monday, April 12, 2010
Dr. Kenneth Pelletier
He conducted a study on patients who recovered despite great odds and found 5 characteristics common to all of them:
-profound intrapsychic change through meditation, prayer, or other spiritual practice
-profound interpersonal changes, as a result: relationships more solid
-alteration in diet: optimum nutrition
-a deeps sense of the spiritual as well as material aspects of life
-feeling that their recovery was not a gift not spontaneous remission, but rather a long, hard struggle they had won for themselves
That is me!!
-profound intrapsychic change through meditation, prayer, or other spiritual practice
-profound interpersonal changes, as a result: relationships more solid
-alteration in diet: optimum nutrition
-a deeps sense of the spiritual as well as material aspects of life
-feeling that their recovery was not a gift not spontaneous remission, but rather a long, hard struggle they had won for themselves
That is me!!
#13 Believe in your treatment program
Excited belief is one of the great intangibles in successful cancer treatment.
"Own" your treatment program. See it as a friend. Believe it is there to help you. Excited belief should be the goal.
(Some day the scientific and medical communities will fully document the biological reality of this kid of optimism).
"Own" your treatment program. See it as a friend. Believe it is there to help you. Excited belief should be the goal.
(Some day the scientific and medical communities will fully document the biological reality of this kid of optimism).
#12 Give only informed consent
Make sure you get all the details for treatments, surgeries, etc.
Make sure you know what you are getting into, that you are comfortable with it, and that you believe it is in your best interest.
Make sure you know what you are getting into, that you are comfortable with it, and that you believe it is in your best interest.
Sunday, April 11, 2010
#10 Reflect on Treatment Decision, #11 Decide!
Think about your options. And empower yourself to decide the course of treatment that is right for you.
Do this over and over and over again.
Do this over and over and over again.
More from Siegel's Love, Medicine & Miracles
"Drugs and surgery buy time, and may cure, while the patients work to change their lives."
"I try to get patients to understand that the body heals, not the therapy. All healing is scientific. At a recetn conference, someone told me he knew someone on a macrobiotic diet, someone else on a diet exactly the opposite, an a third person on chemotherapy and radiation. All three got well, and this person couldn't understand how the body could accomplish this or how the treatments made any sense. But the body can utilize and form of energy for healing--as long as the patient believes in it."
"Let's say I recommended eating three peanut butter sandwiches a day to cure cancer. Some people would get well and claim it was the peanut butter that did it. Then even more people would have hope, eat peanut butter, and get better too. But we know it's not the peanut butter. It's their hope and the changes they produce in their lives while they're on the new therapy."
"I try to get patients to understand that the body heals, not the therapy. All healing is scientific. At a recetn conference, someone told me he knew someone on a macrobiotic diet, someone else on a diet exactly the opposite, an a third person on chemotherapy and radiation. All three got well, and this person couldn't understand how the body could accomplish this or how the treatments made any sense. But the body can utilize and form of energy for healing--as long as the patient believes in it."
"Let's say I recommended eating three peanut butter sandwiches a day to cure cancer. Some people would get well and claim it was the peanut butter that did it. Then even more people would have hope, eat peanut butter, and get better too. But we know it's not the peanut butter. It's their hope and the changes they produce in their lives while they're on the new therapy."
Wednesday, March 31, 2010
Do you love yourself? (From Siegel's Love, Medicine & Miracles)
"Part of the mind's effect on health is direct and conscious. The extent to which we love ourselves determines whether we eat right, get enough sleep, smoke, wear seat belts, exercise, and so on. Each of these choices is a statement of how much we care about living. These decisions control about 90 percent of the factors that determine our state of health. The trouble is that most people's motivation to attend to these basics is deflected by attitudes hidden from everyday awareness. As a result, many of us have mixed intentions."
"Self-love has come to mean only vanity and narcissism. The pride of being and the determination to care for our own needs have gone out of the meaning. Nevertheless, an unreserved, positive self-adoration remains the essence of health, it is the most important asset a patient must gain to become exceptional. Self-esteem and self-love are not sinful. They make living a joy instead of a chore."
I know how to love others. I want to love myself as I love others. (Even the bible says to love others as we love our selves, which almost suggests that I don't fully know how to love others, or I will know even better once I love myself).
I remember, years ago, in a session with Dr. Yeung, I was describing a situation where I was treated poorly by someone. I was talking about it with a smile, and saying maybe I deserved it, maybe they were having an off day.... etc. etc. And he stopped me and said, how would you react or feel if someone treated Celeste that way?
Well, I nearly flew into a rage about it. A blood boiling, saliva spitting, red faced violent rage.
His point was made.
Why didn't I feel I deserved the same respect and treatment I felt my sister deserved? Why indeed?
And years later, I know it's still something I need to work on. I need to worry less about pleasing others and doing things for them, and more on making sure I am getting well so I can live and love and shine and be my very best self to everyone around me.
"Self-love has come to mean only vanity and narcissism. The pride of being and the determination to care for our own needs have gone out of the meaning. Nevertheless, an unreserved, positive self-adoration remains the essence of health, it is the most important asset a patient must gain to become exceptional. Self-esteem and self-love are not sinful. They make living a joy instead of a chore."
I know how to love others. I want to love myself as I love others. (Even the bible says to love others as we love our selves, which almost suggests that I don't fully know how to love others, or I will know even better once I love myself).
I remember, years ago, in a session with Dr. Yeung, I was describing a situation where I was treated poorly by someone. I was talking about it with a smile, and saying maybe I deserved it, maybe they were having an off day.... etc. etc. And he stopped me and said, how would you react or feel if someone treated Celeste that way?
Well, I nearly flew into a rage about it. A blood boiling, saliva spitting, red faced violent rage.
His point was made.
Why didn't I feel I deserved the same respect and treatment I felt my sister deserved? Why indeed?
And years later, I know it's still something I need to work on. I need to worry less about pleasing others and doing things for them, and more on making sure I am getting well so I can live and love and shine and be my very best self to everyone around me.
Tuesday, March 30, 2010
New Docs
I was referred to the medical oncologist Dr. O. I met him and his colleague Dr. T on Monday. I told them openly of my frustration with working with Dr. C. They explained, off the record that this was a complaint they had heard before. His surgical skill is his strong point. Trying to be both a surgeon and an oncologist means he is limited in the time he can devote to researching and planning treatment. Medical oncologists do this full time.
It never occurred to me until that point that I should have a separate medical oncologist who is only responsible for that part of my care. It makes sense. They have agreed to work with me. I gave them a copy of the most recent scan. I have an appointment with them at the end of April where I will give them the follow up scan. They will make their own separate, independent interpretation of how I am responding to the clinical trial and advise me of their recommendations. I like this because it's a check for the folks at sunnybrook. The most recent scan report was mixed results at best. However, they told me overall things were stable or getting smaller. I don't have much confidence in what they are telling me. This way provides another opinion as long as I am in the trial. Should I need to be taken off the trial, Dr. O and his team will then take over my care.
I feel so good about the meeting with them. We spoke for over 30 minutes. They gave me their time compassionately and without rushing. I feel good about this partnership. I feel good that the next steps are outlined should the trial prove less than effective. I feel like I can be more confident that I am getting the appropriate care.
Additionally, the recommended that I get genetic testing... For the women in my family, but also because some treatments are tailored to genes, and should I have a particular gene I should be making use of the gene therapies available. Furthermore, it calls into question Dr. C proclamation to my sisters that they have just as much chance as anyone in the population of getting ovarian cancer. What was he basing that information on?!?!!? I called Ingrid, Dr. C's nurse and asked if I'd had genetic testing and she said if I had, I would remember because it involved an interview. Definitely never happened. When I go for chemo tomorrow I am going to get a referral for genetic testing at PMH (where Dr. O works out of). The wonderful thing about being treated there is that it's walking distance from my house! :)
Today, I also procured a new family doc. She introduced herself as Sarah and the informality of it all made me realize this would also be a great partnership. She's lovely and down to earth, and game for taking me on, a patient riddled with serious problems, and a history of various complications. She is also open to alternative therapies and seems very supportive and willing to partner with me in HOPE!
The categories of optimism and pessimism no longer exist for me. I am a prisoner of hope.
It never occurred to me until that point that I should have a separate medical oncologist who is only responsible for that part of my care. It makes sense. They have agreed to work with me. I gave them a copy of the most recent scan. I have an appointment with them at the end of April where I will give them the follow up scan. They will make their own separate, independent interpretation of how I am responding to the clinical trial and advise me of their recommendations. I like this because it's a check for the folks at sunnybrook. The most recent scan report was mixed results at best. However, they told me overall things were stable or getting smaller. I don't have much confidence in what they are telling me. This way provides another opinion as long as I am in the trial. Should I need to be taken off the trial, Dr. O and his team will then take over my care.
I feel so good about the meeting with them. We spoke for over 30 minutes. They gave me their time compassionately and without rushing. I feel good about this partnership. I feel good that the next steps are outlined should the trial prove less than effective. I feel like I can be more confident that I am getting the appropriate care.
Additionally, the recommended that I get genetic testing... For the women in my family, but also because some treatments are tailored to genes, and should I have a particular gene I should be making use of the gene therapies available. Furthermore, it calls into question Dr. C proclamation to my sisters that they have just as much chance as anyone in the population of getting ovarian cancer. What was he basing that information on?!?!!? I called Ingrid, Dr. C's nurse and asked if I'd had genetic testing and she said if I had, I would remember because it involved an interview. Definitely never happened. When I go for chemo tomorrow I am going to get a referral for genetic testing at PMH (where Dr. O works out of). The wonderful thing about being treated there is that it's walking distance from my house! :)
Today, I also procured a new family doc. She introduced herself as Sarah and the informality of it all made me realize this would also be a great partnership. She's lovely and down to earth, and game for taking me on, a patient riddled with serious problems, and a history of various complications. She is also open to alternative therapies and seems very supportive and willing to partner with me in HOPE!
The categories of optimism and pessimism no longer exist for me. I am a prisoner of hope.
Hypnosis
"Recent work has confirmed this unconscious awareness. Henry Bennett, a psychologist at the University of California Medical School at Davis, played a tape to anesthetized patients asking them to signal that they had heard the message by touching their ears during a post-op interview. Nearly all of them repeatedly tugged at their ears without being aware of it, but none could remember the message. In another experiment, Dr. Bennett asked unconscious patients to make one hard warmer than the other, and they promptly complied. With another group of patients, nonhypnotic pre-op suggestions that blood would leave the hip area reduced blood loss by half during hip surgery. We have an incredible mechanism by which we can direct chemotherapy to a cancer or divert blood to starve a tumor." Siegel
I am going to go see a hypnotist. Melissa, my friend and purple belt training partner, starting seeing one before the abu dhabi competition. She said she had two sessions and it helped her mindset immensely. We had lunch today and she was heading to her third session, in preparation for pan ams in a week. Not only did they do unconscious work, but she also taught Melissa strategies for shaping her thoughts and how to delete negative ones.
I know for competing, but also for cancer, my mindset is my weakest point. I figure what she does for jiu jitsu fighters would be useful for me not just as a martial artist, but also as a cancer fighter. I want to tap into the power of this mind body connection. I want to push the boundaries of mind/body/spirit and forge ahead with strong beliefs and convictions that I am getting well and I am living to the fullest.
I am excited to add another aspect and another person to all the ways I am pursuing overall wellness.
I read recently: "there are no incurable diseases, only incurable people." I am willing to examine and try to dismantle all the barriers that exist between me and healing. This is just another avenue.
In other news, my mind set has changed, or the terminology I adopt has changed. I don't think people exist in states of living or of dying... If they do, then everyone is dying. I think the categories are alive or dead. And while there is life in this body I am going to give, love, and live as much as possible.
I am going to go see a hypnotist. Melissa, my friend and purple belt training partner, starting seeing one before the abu dhabi competition. She said she had two sessions and it helped her mindset immensely. We had lunch today and she was heading to her third session, in preparation for pan ams in a week. Not only did they do unconscious work, but she also taught Melissa strategies for shaping her thoughts and how to delete negative ones.
I know for competing, but also for cancer, my mindset is my weakest point. I figure what she does for jiu jitsu fighters would be useful for me not just as a martial artist, but also as a cancer fighter. I want to tap into the power of this mind body connection. I want to push the boundaries of mind/body/spirit and forge ahead with strong beliefs and convictions that I am getting well and I am living to the fullest.
I am excited to add another aspect and another person to all the ways I am pursuing overall wellness.
I read recently: "there are no incurable diseases, only incurable people." I am willing to examine and try to dismantle all the barriers that exist between me and healing. This is just another avenue.
In other news, my mind set has changed, or the terminology I adopt has changed. I don't think people exist in states of living or of dying... If they do, then everyone is dying. I think the categories are alive or dead. And while there is life in this body I am going to give, love, and live as much as possible.
Tuesday, March 16, 2010
#9-Conviction versus wishful thinking
Of course no one wants to have chemotherapy. Me included. However, I don't want to rule out a treatment option, just because I dislike the treatment.
I believe in everything I am doing. I believe in the work I am doing with the osteopaths. I believe in the supplement and nutrition program I am doing with the naturopaths. I believe in regular exercise. I believe in the potential of the clinical trial I am in. I believe in the cannabis work with Chaman.
I am convinced and I hold the convictions that these things combined are working and moving me closer and closer every day to total wellness and health and well being.
I believe in everything I am doing. I believe in the work I am doing with the osteopaths. I believe in the supplement and nutrition program I am doing with the naturopaths. I believe in regular exercise. I believe in the potential of the clinical trial I am in. I believe in the cannabis work with Chaman.
I am convinced and I hold the convictions that these things combined are working and moving me closer and closer every day to total wellness and health and well being.
#8-Gauge your confidence in your medical team
I am very confident in my treatment with the osteopaths: Daniel and Todd. Todd is out there but, I know he is working to get my body functioning optimally so that it can heal. Daniel is not just part of my health care team, he is my friend and more invested than most in my recovery. I know he does research and more than would be generally required/expected in order to care for me as best he can. He also keeps me on tracks with the balance between training and healing.
I am confident also in the care I get at the Naturopathic college. I have had some fantastic interns there. The best is my current intern Rochelle. It is too bad she graduates a few short months. I trust the supervisors there and I know they are working for me, always pushing the envelop and the boundaries, trying to continuously offer me options... always doing research on my behalf. I trust that and I appreciate that.
I trust Chaman, another naturopath I work with. He is always working for me, and he's never charged me for his services. I know he just wants to see me get better.
I have confidence and a good relationship in my GP Dr. Taylor.
The weakest link is Dr. Covens. I have requested a referral to another doctor and I am waiting for that appointment. I know I need to find someone else because I have next to no confidence in him or his decisions.
I am confident also in the care I get at the Naturopathic college. I have had some fantastic interns there. The best is my current intern Rochelle. It is too bad she graduates a few short months. I trust the supervisors there and I know they are working for me, always pushing the envelop and the boundaries, trying to continuously offer me options... always doing research on my behalf. I trust that and I appreciate that.
I trust Chaman, another naturopath I work with. He is always working for me, and he's never charged me for his services. I know he just wants to see me get better.
I have confidence and a good relationship in my GP Dr. Taylor.
The weakest link is Dr. Covens. I have requested a referral to another doctor and I am waiting for that appointment. I know I need to find someone else because I have next to no confidence in him or his decisions.
Friday, March 12, 2010
#7 Understand your conventional treatment options
For me: chemotherapy and surgery. Done both twice.
Onto a third round of an experimental drug.
Just paying attention to other patients. I have seen some patients being treated with doxorubicin or caelyx. So, that is something else to look into or consider.
I really want to do a chemo fit test if/when I get to a point where I am off chemotherapy for 3 weeks. That test will test my cancer against every known chemo agent as well as some non-traditional therapies. It costs about $3000.
I really want to get out of the cycle of chemotherapy. I want a longterm/lasting/permanent solution.
Onto a third round of an experimental drug.
Just paying attention to other patients. I have seen some patients being treated with doxorubicin or caelyx. So, that is something else to look into or consider.
I really want to do a chemo fit test if/when I get to a point where I am off chemotherapy for 3 weeks. That test will test my cancer against every known chemo agent as well as some non-traditional therapies. It costs about $3000.
I really want to get out of the cycle of chemotherapy. I want a longterm/lasting/permanent solution.
Tuesday, March 9, 2010
#6- Rethink the Statistics
-do not be paralyzed by statistics.
-there is no type of cancer that does not have some rates of survival
-no statistician can determine the results of any particular case, including mine... and not other patient in any study anywhere has done exactly the things I have done/I am doing
-determine to act with the conviction that you will be counted among the “survivor statistics”
I have always ignored or discounted the statistics. In fact I have avoided reading much information because I didn’t want to know the statistics. I was aware of them, and they were bad, and thinking about them never helped, so I tried not to--and I avoided places that would confront me with them. Now I am reading more and researching more. And I need to get over this avoidance. I need to look at any stat I see and think of it as a determination to be in the survivor group. That is what I plan to do from now on. Only 30% of people are alive 5 years after a diagnosis like mine. I am almost at 4 years post diagnosis and I will definitely, definitively, defiantly be among that 30% living 5+ years. I’m going to live another 50, at least!!
-there is no type of cancer that does not have some rates of survival
-no statistician can determine the results of any particular case, including mine... and not other patient in any study anywhere has done exactly the things I have done/I am doing
-determine to act with the conviction that you will be counted among the “survivor statistics”
I have always ignored or discounted the statistics. In fact I have avoided reading much information because I didn’t want to know the statistics. I was aware of them, and they were bad, and thinking about them never helped, so I tried not to--and I avoided places that would confront me with them. Now I am reading more and researching more. And I need to get over this avoidance. I need to look at any stat I see and think of it as a determination to be in the survivor group. That is what I plan to do from now on. Only 30% of people are alive 5 years after a diagnosis like mine. I am almost at 4 years post diagnosis and I will definitely, definitively, defiantly be among that 30% living 5+ years. I’m going to live another 50, at least!!
Friday, February 19, 2010
#5- Become an e-patient
www.cancerrecovery.org
www.oncolink.org
hold yourself accountable for an in-depth knowledge of your treatment.
The first link is pretty good. Lots of outdated links though. I signed up for a daily devotional that will be emailed to me every day.
The second is better. Loads of info. Lots of reading.
www.oncolink.org
hold yourself accountable for an in-depth knowledge of your treatment.
The first link is pretty good. Lots of outdated links though. I signed up for a daily devotional that will be emailed to me every day.
The second is better. Loads of info. Lots of reading.
February 18, 2010
1. Examine. Sept back from the day to day pressures of life to evaluate your current situation in its entirety.
2. Discover. Assess both current life issues that must be changed and well as future needs that must be met.
3. Plan. Create a plan to restore health and total well being.
4. Implement. Work in partnership with health advisers who have your confidence. Begin a self-care plan that creates whole-person well-being.
5. Review. Conduct quarterly reviews of your progress, making adjustments as necessary.
I will address these at the beginning of march after I've looked into things a bit more and familiarized myself with the book...
2. Discover. Assess both current life issues that must be changed and well as future needs that must be met.
3. Plan. Create a plan to restore health and total well being.
4. Implement. Work in partnership with health advisers who have your confidence. Begin a self-care plan that creates whole-person well-being.
5. Review. Conduct quarterly reviews of your progress, making adjustments as necessary.
I will address these at the beginning of march after I've looked into things a bit more and familiarized myself with the book...
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