I have changed my blog up. I have also made it readable by invite only. If you wish to be invited please email me at froodgirl@hotmail.com.
Blessings.
Putting in your two cents
1 year ago
Monday, October 19, 2009
Monday, April 6, 2009
I've got good excuses, I swear!
Holy cow, it’s been 4 months!
I am happy to report that this long hiatus has been a direct result of the fact that my life has been utterly blooming.
I have been so busy!
I shall do a quick recap, and then drill down more in later posts.
For starters I should report that last November about a week after my last post I underwent a surgical procedure and had a partial mastectomy of my left breast. I was conflicted about this decision up until I lost consciousness on the operating table. However, in October an MRI confirmed a new suspicious area in my breast very close to the original tumor site. After feeling so confident and happy that everything was going exactly the way I wanted it to be going, this was a huge bummer… to put it lightly. To put it more realistically it made me call everything into question.
After allowing myself some time to just freak out and feel afraid, sad, confused etc I did what I always do. I rolled up my sleeves and started digging. I talked to a lot of people. I meditated. To make a difficult decision making process story short, I opted to let Dr. Stocks remove the new lesion. I realized that 1. I would obsess about it being there, which is no way to live and 2. Removing it gave me an opportunity to get a lot more information, which is always a good thing.
Dr. Stocks is up there with my acupuncturists Ken and Barb. He totally rules and I have the high school girl crush caliber zeal in my love for him like I do for Ken and Barb, Acharan and did for Heather. He listens to me. He respects my thought process and supports me. He never pushes, but makes honest recommendations from his point of view. He thinks outside the box, and simultaneously maintains a respect for appropriate use of more extreme medical measures…the man is a surgeon after all. I felt 100% confident in his hands. When I woke up from surgery he came and talked to me. He informed me that he had removed ¼ of my breast….way more than I was expecting. He said he took out any tissue that looked abnormal, and given all that I put my poor body through and especially that part of my body I am not surprised there was a lot to take away.
The miraculous part: my breast looks almost entirely normal minus some light scarring, and I should still be able to breast feed. This man is a wizard. I feel something like women who purposely get boob jobs must feel…I want to show people what it looks like, because it is so amazing. He took this thing I dreaded and made it an experience and a choice I can happily live with for the rest of my life, no regrets.
Even better, he worked with me and Donald Yance to get a number of pathology tests done on the new lesion. These were tests that my (sucky) oncologist at Duke would not order b/c even though it was a mere stroke of his pen to do so, he just won’t traverse with me one step outside the holy ‘standard of care’. Like so many other things with him, just a little sign that he was listening and respecting my wishes and point of view for my care would have done so much to build trust and rapport. But, alas I find myself stuck in the machine.
I had a live tissue sample sent to a lab called Wiesenthal that does sensitivity and resistance testing on live cells. This gives you a clear picture of what kind of drug therapies will and wont be effective on you, an individual not on you a statistic. The longer I deal with the machine the clearer it becomes to me that unfortunately cancer is now so prevalent that you are set up in a firing range and fired at with buck shot. It’s not about you at all…it’s about what a statistical pool of people who may or may not be anything like you have done. So they will recommend therapies based on the stat’s and fire them at you scattershot and hope you fall into the law of averages and it works for you pretty well too.
Interestingly enough, this new tumor was found to be resistant to Taxol…one of the main drugs I was given. Who knows what this means? Does it mean that all along I was resistant to taxol but they just dosed me hard enough that they got a good response? OR, does it mean that there were still some microscopic cells hanging out in my breast not killed by the original chemo blast because they were more resistant, and they started to party and reproduced making a stronger tumor? Probably a little of both. Anyway, this laboratory testing makes me more informed if I ever opt to do a chemotherapy strategy again. I am working very hard to make sure that is never the case…but information is power, ignorance is not bliss. Removing this tumor gave me this information. This is good.
I recovered from the surgery very quickly, only missing a couple of days of work. Also, by working with my acupuncturist Ken I never needed narcotic pain medication. Rest and my new best friend homeopathic arnica saw to it that the day of surgery I was walking through the grocery store w/ my friend JB…he was doing all the lifting of course.
In that recovery period I drove to Maryland. JB once again accompanied me (he helped me out through this whole process immensely. I am incredibly blessed.) I went there to check out an oncologist who Yance recommended. It was interesting, and he managed to get an approval code from my insurance company for a PET-CT when I had been all but begging my (sucky) Duke onc to get one. Instead (sucky) Duke doc allowed them to jump me through all the hoops and then deny it anyway. He did not fight for it or for me. This Maryland doctor got the approval within the hour and he arranged it so I could have the test done back in NC. I was pretty blown away by that. However, overall the entire visit did not leave me feeling like he was the doctor for me. My search for an oncologist who I can feel really good about still continues.
After this life has continued to accelerate. To quickly recap from then to now:
~ Prior to the surgery I took part in the 48 hour film project. I got cast in a lead role and got to use the year’s worth of Meisner training I had recently finished. It was SO much fun. This was a project I had read about in years past and I thought it sounded like an insanely good time. It was.
~ As a direct result of this another local filmmaker asked me to be in a film he was doing. It was a beautiful and very personal project for him and it too was really fun and challenging in a completely different way. This film will be released locally later this month.
~ After this I was asked to stage manage a local production that was a collaborative workshop project. This was incredibly challenging, interesting and fun. When the finished work was put up I got to stand by and watch a creature I helped build come to life. It was one of the coolest things I have ever done.
~ During this, despite the fact that I was insanely busy between this project and work my friend Tony also asked me if I wanted a 15 minute time slot for a project he runs quarterly called Performance Art Night. For this I wrote a piece, rehearsed it with my friend Bill, and put it in front of an audience. I had never written a piece for live performance before. It was an awesome experience. More about this later.
~ Throughout all of this I have also been attending teacher training weekends to get my certification to be a Kundalini Yoga instructor. I have one more weekend to go and next month I will be official.
~ In the last few weeks I moved in with my boyfriend. My vagabonding is over! I have not had a permanent address for most of the past year, and I have never lived with someone I was involved with so this is a big step for me! This really came out of the blue; he is someone from my past and we discovered a long unsaid, long dormant, long unexplored love for one another that we are in the happy process of unfolding.
Well…that’s the skinny version. Life is good! It’s wonderful in fact! I have so much I could say about every point above, and I’ll spend some time catching up on all of it.
The important thing I want to call out here is the donation box that Monica set up for me. I had been planning to throw a benefit party for myself at the urging of many friends. I had it pretty firmly in the works when I was challenged by a dear friend of mine to reconsider the energy behind this endeavor. My life is full…it’s blooming and spilling over with plenty in so many ways. Yes, I am in debt because of cancer and that sucks. I am not ashamed to ask for help when I need it…but really my life is starting to equalize. I am not in the kind of debt someone who does not have health insurance might have been in. There is light at the end of this tunnel for me.
Instead, down the road I will be doing fundraisers for a personal project I am undertaking. I am taking the piece I mentioned above for Performance Art Night and building that into a collaborative project about my personal experiences with cancer and recovery. Right now I have a lot of beads but no string…I have a lot of work to do to get it out of idea phase and into workshop mode. I have determined that if anyone stumbles across my blog and decides to donate I will consider it as monies towards that eventual project, not money for my personal benefit.
For right now I am recovering from my 2nd to last ‘Yoga National Guard’ weekend. I will be spending most of this month studying for the final exam. Eeeeek! I have not taken a test since college which was a looooong time ago now. This Thursday I have a phone consult with Yance that I am ramping up for. I have a lot of questions for him. I continue on his herbal protocol which is complicated, expensive and feels deep in my marrow like exactly what I am supposed to be doing right now. It has this energy behind it of ‘nothing good is ever easy or cheap’. I am also still unpacking in my awesome new apartment and figuring out what it means day to day to live with your significant other. I am learning, learning, growing, growing. Sat Nam!
So much more to say! More soon…
I am happy to report that this long hiatus has been a direct result of the fact that my life has been utterly blooming.
I have been so busy!
I shall do a quick recap, and then drill down more in later posts.
For starters I should report that last November about a week after my last post I underwent a surgical procedure and had a partial mastectomy of my left breast. I was conflicted about this decision up until I lost consciousness on the operating table. However, in October an MRI confirmed a new suspicious area in my breast very close to the original tumor site. After feeling so confident and happy that everything was going exactly the way I wanted it to be going, this was a huge bummer… to put it lightly. To put it more realistically it made me call everything into question.
After allowing myself some time to just freak out and feel afraid, sad, confused etc I did what I always do. I rolled up my sleeves and started digging. I talked to a lot of people. I meditated. To make a difficult decision making process story short, I opted to let Dr. Stocks remove the new lesion. I realized that 1. I would obsess about it being there, which is no way to live and 2. Removing it gave me an opportunity to get a lot more information, which is always a good thing.
Dr. Stocks is up there with my acupuncturists Ken and Barb. He totally rules and I have the high school girl crush caliber zeal in my love for him like I do for Ken and Barb, Acharan and did for Heather. He listens to me. He respects my thought process and supports me. He never pushes, but makes honest recommendations from his point of view. He thinks outside the box, and simultaneously maintains a respect for appropriate use of more extreme medical measures…the man is a surgeon after all. I felt 100% confident in his hands. When I woke up from surgery he came and talked to me. He informed me that he had removed ¼ of my breast….way more than I was expecting. He said he took out any tissue that looked abnormal, and given all that I put my poor body through and especially that part of my body I am not surprised there was a lot to take away.
The miraculous part: my breast looks almost entirely normal minus some light scarring, and I should still be able to breast feed. This man is a wizard. I feel something like women who purposely get boob jobs must feel…I want to show people what it looks like, because it is so amazing. He took this thing I dreaded and made it an experience and a choice I can happily live with for the rest of my life, no regrets.
Even better, he worked with me and Donald Yance to get a number of pathology tests done on the new lesion. These were tests that my (sucky) oncologist at Duke would not order b/c even though it was a mere stroke of his pen to do so, he just won’t traverse with me one step outside the holy ‘standard of care’. Like so many other things with him, just a little sign that he was listening and respecting my wishes and point of view for my care would have done so much to build trust and rapport. But, alas I find myself stuck in the machine.
I had a live tissue sample sent to a lab called Wiesenthal that does sensitivity and resistance testing on live cells. This gives you a clear picture of what kind of drug therapies will and wont be effective on you, an individual not on you a statistic. The longer I deal with the machine the clearer it becomes to me that unfortunately cancer is now so prevalent that you are set up in a firing range and fired at with buck shot. It’s not about you at all…it’s about what a statistical pool of people who may or may not be anything like you have done. So they will recommend therapies based on the stat’s and fire them at you scattershot and hope you fall into the law of averages and it works for you pretty well too.
Interestingly enough, this new tumor was found to be resistant to Taxol…one of the main drugs I was given. Who knows what this means? Does it mean that all along I was resistant to taxol but they just dosed me hard enough that they got a good response? OR, does it mean that there were still some microscopic cells hanging out in my breast not killed by the original chemo blast because they were more resistant, and they started to party and reproduced making a stronger tumor? Probably a little of both. Anyway, this laboratory testing makes me more informed if I ever opt to do a chemotherapy strategy again. I am working very hard to make sure that is never the case…but information is power, ignorance is not bliss. Removing this tumor gave me this information. This is good.
I recovered from the surgery very quickly, only missing a couple of days of work. Also, by working with my acupuncturist Ken I never needed narcotic pain medication. Rest and my new best friend homeopathic arnica saw to it that the day of surgery I was walking through the grocery store w/ my friend JB…he was doing all the lifting of course.
In that recovery period I drove to Maryland. JB once again accompanied me (he helped me out through this whole process immensely. I am incredibly blessed.) I went there to check out an oncologist who Yance recommended. It was interesting, and he managed to get an approval code from my insurance company for a PET-CT when I had been all but begging my (sucky) Duke onc to get one. Instead (sucky) Duke doc allowed them to jump me through all the hoops and then deny it anyway. He did not fight for it or for me. This Maryland doctor got the approval within the hour and he arranged it so I could have the test done back in NC. I was pretty blown away by that. However, overall the entire visit did not leave me feeling like he was the doctor for me. My search for an oncologist who I can feel really good about still continues.
After this life has continued to accelerate. To quickly recap from then to now:
~ Prior to the surgery I took part in the 48 hour film project. I got cast in a lead role and got to use the year’s worth of Meisner training I had recently finished. It was SO much fun. This was a project I had read about in years past and I thought it sounded like an insanely good time. It was.
~ As a direct result of this another local filmmaker asked me to be in a film he was doing. It was a beautiful and very personal project for him and it too was really fun and challenging in a completely different way. This film will be released locally later this month.
~ After this I was asked to stage manage a local production that was a collaborative workshop project. This was incredibly challenging, interesting and fun. When the finished work was put up I got to stand by and watch a creature I helped build come to life. It was one of the coolest things I have ever done.
~ During this, despite the fact that I was insanely busy between this project and work my friend Tony also asked me if I wanted a 15 minute time slot for a project he runs quarterly called Performance Art Night. For this I wrote a piece, rehearsed it with my friend Bill, and put it in front of an audience. I had never written a piece for live performance before. It was an awesome experience. More about this later.
~ Throughout all of this I have also been attending teacher training weekends to get my certification to be a Kundalini Yoga instructor. I have one more weekend to go and next month I will be official.
~ In the last few weeks I moved in with my boyfriend. My vagabonding is over! I have not had a permanent address for most of the past year, and I have never lived with someone I was involved with so this is a big step for me! This really came out of the blue; he is someone from my past and we discovered a long unsaid, long dormant, long unexplored love for one another that we are in the happy process of unfolding.
Well…that’s the skinny version. Life is good! It’s wonderful in fact! I have so much I could say about every point above, and I’ll spend some time catching up on all of it.
The important thing I want to call out here is the donation box that Monica set up for me. I had been planning to throw a benefit party for myself at the urging of many friends. I had it pretty firmly in the works when I was challenged by a dear friend of mine to reconsider the energy behind this endeavor. My life is full…it’s blooming and spilling over with plenty in so many ways. Yes, I am in debt because of cancer and that sucks. I am not ashamed to ask for help when I need it…but really my life is starting to equalize. I am not in the kind of debt someone who does not have health insurance might have been in. There is light at the end of this tunnel for me.
Instead, down the road I will be doing fundraisers for a personal project I am undertaking. I am taking the piece I mentioned above for Performance Art Night and building that into a collaborative project about my personal experiences with cancer and recovery. Right now I have a lot of beads but no string…I have a lot of work to do to get it out of idea phase and into workshop mode. I have determined that if anyone stumbles across my blog and decides to donate I will consider it as monies towards that eventual project, not money for my personal benefit.
For right now I am recovering from my 2nd to last ‘Yoga National Guard’ weekend. I will be spending most of this month studying for the final exam. Eeeeek! I have not taken a test since college which was a looooong time ago now. This Thursday I have a phone consult with Yance that I am ramping up for. I have a lot of questions for him. I continue on his herbal protocol which is complicated, expensive and feels deep in my marrow like exactly what I am supposed to be doing right now. It has this energy behind it of ‘nothing good is ever easy or cheap’. I am also still unpacking in my awesome new apartment and figuring out what it means day to day to live with your significant other. I am learning, learning, growing, growing. Sat Nam!
So much more to say! More soon…
Monday, February 2, 2009
Click. Donate. Smile.
Hi all! This is Monica, Melanie's friend. I am guest blogging for her in order to post a very special and important link. By clicking on the image below, you can help our dear and awesome friend Melanie out with her cavalcade of not-very-fun-at-all hospital bills, accumulated during her battle with Alien Ninja Anteaters.
...
Um, I'm being told that's not correct. In fact, she accumulated all these bills and expenses during her battle with CANCER. Apparently that's quite different from Alien Ninja Anteaters.
Anyway, if you have a moment and a bit of extra jingle, please click below and head over to Paypal. Through the miracle of the Inter-tubes you can make a donation using a major credit card, debit card, or your own Paypal account.
Thanks so much. And now, back to your regular scheduled Melanie.
...
Um, I'm being told that's not correct. In fact, she accumulated all these bills and expenses during her battle with CANCER. Apparently that's quite different from Alien Ninja Anteaters.
Anyway, if you have a moment and a bit of extra jingle, please click below and head over to Paypal. Through the miracle of the Inter-tubes you can make a donation using a major credit card, debit card, or your own Paypal account.
Thanks so much. And now, back to your regular scheduled Melanie.
Tuesday, November 18, 2008
Picture Postcards from Oz
I received a thank you card today from a woman I have been emailing. She was recently diagnosed with thyroid cancer and one of my co-workers connected us because she is interested in integrative care but didn't know how to get started.
I gave her (I hope) the benefit of my own experience and pointed her in some directions. I also sent her a used copy of 'Crazy Sexy Cancer Tips' by Kris Carr b/c I found it so refreshing and interesting in my own journey.
She wrote this in her thank you:
I'm finding that people in my life are quite surprising. I'm finding strength and concern in the most unusual places and disappointment where I never thought I would.
I found this very moving. There is so much that we learn so quickly when we are forced to make this journey. It's important to remember to sight see while you are in Oz. It's a beautiful place, despite how scary it is.
I gave her (I hope) the benefit of my own experience and pointed her in some directions. I also sent her a used copy of 'Crazy Sexy Cancer Tips' by Kris Carr b/c I found it so refreshing and interesting in my own journey.
She wrote this in her thank you:
I'm finding that people in my life are quite surprising. I'm finding strength and concern in the most unusual places and disappointment where I never thought I would.
I found this very moving. There is so much that we learn so quickly when we are forced to make this journey. It's important to remember to sight see while you are in Oz. It's a beautiful place, despite how scary it is.
Sunday, November 2, 2008
The strangest things seem suddenly routine
Like...chewing your juice.
I would like to say things have been quiet, but that would not be accurate. I've had a lot going on.
Every day brings a new perspective and new ideas. I feel like every week I am trying something new with my diet and lifestyle choices. The most recent addition...juicing! I've been reading the book 'The PH Miracle' by Robert Young. He is highly regarded by the likes of Kris Carr, author of the only actually cool and readable cancer book I received last year 'Crazy Sexy Cancer'. She along with a large community of people believe that by keeping your body in an alkaline state you create an environment where disease cannot thrive. Broken down to it's simplest form the belief here is that all disease is attributed to your body being in an acidic state.
So, how to you abolish acidity and become alkaline? Well...you basically become a vegan and take lot's of pills. I already take lot's of pills, so I figure why not try the lifestyle and see how it feels? I bought a roll of ph strips from Whole Foods and I started buying distilled water and adding baking soda to it (gag...), and changed up my diet to mostly raw and vegan food choices. I peed on the strips all day for several weeks and found that my body has an immediate response to eating and drinking this way. The water is really key...but the rest of it helps too.
It affects me on a number of levels. I don't crave sugar as badly when I eat this way. I'm not doing perfectly there, much to my frustration. Why oh why must every person I work with have fun sized candy bars spilling out of their work areas to torture me? But in the first week I fell off the wagon under the temptation of a free chicken wrap, and about 10 minutes after eating it I wanted sugar so badly I could hardly concentrate. It was enough to convince me that animal products (at least meat) really trigger my sugar cravings.
The thing is...I really like eating meat and dairy. This change has not been easy. I friggin' love cheese. I love a hearty chicken soup. I'm not sure it will be a permanent change but I am giving it some time to see how it really makes me feel.
And juicing...alkaline folks are way into it. A decent juicer is super expensive and I was talking with one of my yoga teachers about it. She said "My husband and I have a juicer we haven't used in ages...would you like to borrow it?" I took her offer as a sign from god that I am supposed to be juicing. It turned out to be a Champion model, one that I had been reading about online as being a really good choice. It weighs about a 100 lbs, but it only has 4 parts and the model has not changed in years. It's sturdy, simple, and only after about a week on the learning curve I am now cranking out a fresh juice for myself in the morning and at night.
The focus is on green juices...not fruit juices b/c they have a ton of sugar in them. The first weekend I had the juicer I went to the farmers market and if it was green and leafy I bought it. I'm getting it down to a science now, and I have been mixing up the greens. Tonights juice was: Arugula (a very spicy green!), dinosaur kale, Italian parsley, red cabbage, broccoli, cucumber, beet, ginger, garlic and lemon. Once the juice is ready you are not supposed to just slug it down either. You are supposed to swish and 'chew' it a bit to allow your saliva to mix in and aid the enzymes and digestion. All the reading I did warned that it takes some time to get used to the taste of green juices, but I think my pallet is very seasoned from all the swamp water tasting herbs I take...and I really like them! Now that I no longer drink coffee, and I have also recently given up green tea (caffeine is acidic..)these really fill in the gap. I do notice they affect my energy too. Two weeks or so in, I woke up one morning and basically bounced out of bed. I have not 'bounced' out of bed since I was a kid.
A friend in my acting class was teasing me a little while ago that I am always eating or drinking something with at least 3 syllables. Kombucha...tahini...turmeric... Colorful foods and drinks that are aimed at flooding my body with nutrients and vitality on a cellular level.
I am seriously thinking about looking into a colonic. This is another thing that the alkaline people swear by. Apparently your intestines and colon can get a build up that affects the absorption of nutrients as food passes through them.
I really look at the things I'm trying, and thinking of trying with more than a little wonderment.
Just a little sample of life in Oz. What an overwhelming place to be.
I would like to say things have been quiet, but that would not be accurate. I've had a lot going on.
Every day brings a new perspective and new ideas. I feel like every week I am trying something new with my diet and lifestyle choices. The most recent addition...juicing! I've been reading the book 'The PH Miracle' by Robert Young. He is highly regarded by the likes of Kris Carr, author of the only actually cool and readable cancer book I received last year 'Crazy Sexy Cancer'. She along with a large community of people believe that by keeping your body in an alkaline state you create an environment where disease cannot thrive. Broken down to it's simplest form the belief here is that all disease is attributed to your body being in an acidic state.
So, how to you abolish acidity and become alkaline? Well...you basically become a vegan and take lot's of pills. I already take lot's of pills, so I figure why not try the lifestyle and see how it feels? I bought a roll of ph strips from Whole Foods and I started buying distilled water and adding baking soda to it (gag...), and changed up my diet to mostly raw and vegan food choices. I peed on the strips all day for several weeks and found that my body has an immediate response to eating and drinking this way. The water is really key...but the rest of it helps too.
It affects me on a number of levels. I don't crave sugar as badly when I eat this way. I'm not doing perfectly there, much to my frustration. Why oh why must every person I work with have fun sized candy bars spilling out of their work areas to torture me? But in the first week I fell off the wagon under the temptation of a free chicken wrap, and about 10 minutes after eating it I wanted sugar so badly I could hardly concentrate. It was enough to convince me that animal products (at least meat) really trigger my sugar cravings.
The thing is...I really like eating meat and dairy. This change has not been easy. I friggin' love cheese. I love a hearty chicken soup. I'm not sure it will be a permanent change but I am giving it some time to see how it really makes me feel.
And juicing...alkaline folks are way into it. A decent juicer is super expensive and I was talking with one of my yoga teachers about it. She said "My husband and I have a juicer we haven't used in ages...would you like to borrow it?" I took her offer as a sign from god that I am supposed to be juicing. It turned out to be a Champion model, one that I had been reading about online as being a really good choice. It weighs about a 100 lbs, but it only has 4 parts and the model has not changed in years. It's sturdy, simple, and only after about a week on the learning curve I am now cranking out a fresh juice for myself in the morning and at night.
The focus is on green juices...not fruit juices b/c they have a ton of sugar in them. The first weekend I had the juicer I went to the farmers market and if it was green and leafy I bought it. I'm getting it down to a science now, and I have been mixing up the greens. Tonights juice was: Arugula (a very spicy green!), dinosaur kale, Italian parsley, red cabbage, broccoli, cucumber, beet, ginger, garlic and lemon. Once the juice is ready you are not supposed to just slug it down either. You are supposed to swish and 'chew' it a bit to allow your saliva to mix in and aid the enzymes and digestion. All the reading I did warned that it takes some time to get used to the taste of green juices, but I think my pallet is very seasoned from all the swamp water tasting herbs I take...and I really like them! Now that I no longer drink coffee, and I have also recently given up green tea (caffeine is acidic..)these really fill in the gap. I do notice they affect my energy too. Two weeks or so in, I woke up one morning and basically bounced out of bed. I have not 'bounced' out of bed since I was a kid.
A friend in my acting class was teasing me a little while ago that I am always eating or drinking something with at least 3 syllables. Kombucha...tahini...turmeric... Colorful foods and drinks that are aimed at flooding my body with nutrients and vitality on a cellular level.
I am seriously thinking about looking into a colonic. This is another thing that the alkaline people swear by. Apparently your intestines and colon can get a build up that affects the absorption of nutrients as food passes through them.
I really look at the things I'm trying, and thinking of trying with more than a little wonderment.
Just a little sample of life in Oz. What an overwhelming place to be.
Sunday, August 31, 2008
I don't need your civil war
August has been quite a month.
Almost three weeks ago I had an appointment at Duke with my new oncologist, Dr. Peppercorn. He is the replacement I have been assigned to because Heather left the oncology department at Duke. That whole process has been very painful for me. I ADORED Heather with a high school crush zeal. When I opted against surgery and radiation in January she was against it, but supportive. She assured me that she would be my doctor no matter what, and she was actively listening and participating in my alternative choices. Then with out warning Heather suddenly stopped communicating with me. Emails were not being answered, or were routed to her nurse practitioner who was being very minimal and cold at best with me. At worst the NP's emails had what felt to me like a hostile and dismissive energy. I felt very unmoored and anxious because having a Duke oncologist on my team felt absolutely right, good and important. Suddenly I felt like I was left to float.
This went on for several weeks, and then I was told that Heather was on a leave of absence. I waited for about another month, and then tried to contact her again. This time I was told that she had left Duke. I asked if there was a way to contact her and say goodbye.
Eventually I pinned down an answer on Heather's whereabouts and she did answer a very personal email wherein I expressed how deeply sad I was to be losing her as my doctor. She replied and told me that she was only leaving oncology, but would still be at Duke. She stated that "I need a break from Oncology for a while. It was getting too hard to lose people I had known for so many years." When I wrote her back and asked her if I could still go to her for advice, she did not answer and I have heard nothing since. I can't help but feel like she has been stifled somehow. That because I have left the box I am now seen as a liability instead of what I am: a patient who is making my own choices, and who wants advice and perspective even if I choose not to follow it to the letter.
So, I had an appointment with Dr. Peppercorn. For me it was a check in. I wanted to know what he advised I do, even though I felt pretty sure I already knew the answer to that question. I also wanted to get a pulse on whether or not he would support me and work with me and the other members of my healing team. My meeting with him went well, I think. He did indeed spend 90% of the time we had using every tactic at his disposal to talk me into surgery. He was totally balls out on that too. He was unabashed about wanting me to be scared. His perspective is that I am in imminent danger if I don't do it. In his words he 'hopes I am still curable'. He asked me to think it over, and make a decision quickly. He said he felt like this was the missing piece, and if I did this I could then move on with my life and feel really good about the future. He left it on a confident note...a sort of 'I know once you really think about what I have said you will know in your heart this is the right choice for you.'
More importantly to me, he also expressed a willingness to work with my other folks. He was willing to share his notes, and he told me he would communicate with Jason at Natura and listen to his reasons for wanting to run certain labs and tests. He also ordered two labs to be done on the tumor samples that give information about how aggressive and proliferative the cancer I had was. He essentially told me that if he was given compelling scientific reasons for doing any tests or labs he would be willing to listen and work with the Natura folks. On that note he refused to run some labs that Jason had asked I have redone because they were totally normal the first time. He felt it was not necessary to re-run any labs that were in normal ranges to begin with. When I asked if he would hear why Jason wanted them re-run he said he would. I felt very good about all of that. He seemed to me to be very 'no nonsense' but also open minded and willing to listen.
I left the appointment however feeling very very heavy hearted. I was once again facing this huge decision, one that I had already made. It felt a little bit like going backwards.
Then, I treated it like I have treated every other big decision. I went to work.
First, I emailed two women whose blogs I read faithfully. Both of them had breast cancer and both of them are currently cancer free with out the use of ANY traditional treatment at all. I told them both how alone I feel, and how terrifying all of this is for me because I often feel like I am being some how subversive. It's insane to me to feel that way about not wanting to cut my breast off. Nonetheless, I feel this crushing loneliness here because there are no websites dedicated to 'Young Survivors Who Don't Listen to their Doctors." Much as I enjoy these two blogs, I also admitted to them both that it's still hard for me b/c they are both not in my demographic. Both of them are older, and at least one of them had an estrogen fed cancer. (I'm not sure about the other one). My cancer was 'triple negative' which is in a class of it's own in a lot of ways from what I understand. I can't help but wonder...does that make a difference? Am I in even more peril because of it? Many women I found that had estrogen positive cancer were glad because there are a lot of long term drugs given to them to suppress the production of estrogen in their body. It is a feeling of extra insurance to them. I was actually delighted when I found out mine was not estrogen fed. To me the idea that my body was creating this problem because of something that occurs naturally was really terrifying. Also, it was deeply saddening to me to think of being medically forced into premature menopause as a way of keeping me healthy. That too seems very backwards to me. Very out of sync with nature and trusting our bodies to be able to heal.
Both women wrote me back and were wonderful, supportive, and empathetic. They both encouraged me in their own ways to listen to my own truth and to trust myself.
The next week I scheduled an appointment for a thermascan. I had been thinking of doing this since talking to a surgeon in April who urged me to have one done and consider removing the tumor bed if it came up 'hot' on the scan. I wanted that further piece of information.
I also had an appointment with a therapist I have recently started seeing. She is a Kundalini Yoga teacher, as well as a certified therapist and I found out on our first meeting that she has counciled cancer patients for umpteen years! I did not even know that about her going in. I just knew that she was a therapist and that I would be able to resonate with her spiritually. My appointment with her was VERY powerful. She listened to me recount the past week, the appointment, the emails with the other women, and my endless list of self doubts, worries, weighings of pro's and con's etc etc and she said "I hear you keep saying that this doctor is 'trying to make you feel' this way or that." She also noted that giving up on the way I am doing things now is like giving up hope on my body...that this body I have right now is capable of being a whole and healed body as is. She said that this kind of hope and the joy I have had because of it is immensely powerful to the immune system and that I should not overlook that. Then she said "It's like this doctor shot an arrow of fear into your heart center." When she landed on that metaphor it all came pouring out for me. Yes..I am afraid. I am so afraid that I am just a naive little nothing who can't possibly know enough to be making these kinds of choices...who am I to think I can do this my way? I told her that I can't help but go to those dark places where I see my loved ones gathered around my hospice bed and I have let them down and it was all my fault because I was so stupid to think I knew what was best and I was now railing against the sky WHY WHY OH WHY did I just not do what I was told?? She asked me to use a Kundalini technique we employ in class to 'tune in' to our greater creative consciousness so I did. I called on my infinite creative higher self and I went into a really deep meditative state...and when I was there I was calm and I could hear my own voice with out the overwhelming babble of fearful voices. When I was there I heard what I needed to hear. Yes, I would consider having surgery IF there was cancer in my body again. Nothing else would be compelling enough for me. Even though I know that this is the most extreme circumstance and if it were to happen it would mean my health was in very serious jeopardy, that and that alone would be my sign that I had been making wrong choices. That was a powerful and simple truth that I knew all along, but felt too afraid to really land on and express.
That same week I also had an acupuncture appointment with Barbara. I told her that I had this nagging little spot on my back that has been bothering me on and off for months. What I did not say was it was accompanied by a little voice of fear in my head that kept whispering to me that it was bone cancer...doom. Barbara worked on my back and the nagging spot went away.
Let's not forget also that the same week I had this terrifying appointment with Dr. Peppercorn was the same week I got my period back!
THEN...last week Barbara contacted me to tell me that she had emailed Donald Yance directly with some questions I had felt I was not getting satisfactory answers from with Jason. Namely, I have asked Jason 3 times now to please put me in touch with other patients on the protocol I am doing. I especially wanted to be connected to any other triple negative breast cancer patients they might have. He never gave me a very straight answer on the matter, which had me feeling like "Okay, why don't these people want their patients to talk to each other?" The end result of this was that Yance has decided to take me on as his patient personally...which is a HUGE BIG DEAL because he is in such high demand that he does not take on new patients. I am totally floored. In an email he wrote back to Barbara he indicated that if I am his patient he can put me in touch with his other patients. (Jason was trained by him, but they have different practices).
THEN, I heard back from Dr. Stocks and he told me that my thermascan was completely clear. There were no signs of any vascular hot spots at all.
So...let me count it up.
My period came back + encouraging emails from women who are doing it naturally + powerful therapeutic session wherein I was reminded that I do know the answers to my difficult questions despite my fears + amazing acupuncture session with Barbara + thermascan results entirely clear + Dr. Narula gave me a years supply of evoidiamine + unexpectedly Donald Yance has offered to take me on as his patient = Dr. Peppercorn is probably not going to like my answer.
It's just this...in the past few weeks all I have gotten over and over again are affirmations that I am making the best possible choices for myself. I am not going about this naively. I am not waving my magic new age incense wand and hoping I'll just be okay (which is how I think a lot of people must look at me) I am constantly gathering these amazing and brilliant teachers and healers around me and what I have is a network of experts who offer advice and encouragement. I am vigilantly having my health monitored and looking for any sign that the protocol I am doing is not effective. IF it ever proved itself to be ineffective I am ready to face the music and admit that it is time for radical but hopefully life saving procedures.
Not that I tend to dwell in 'oh what if' land too too often, but I must admit that when this all began I lamented to myself that I wished I was brave enough to forgo chemo. I wished I was brave enough to just do it all naturally and trusted myself enough to know my limits. I was scared. I was 30 years old, and I was told I had a huge aggressive tumor that was swiftly making a b-line to metastasis. I was told that if it did that I was doomed. I was told that I basically narrowly escaped a death sentence and really noone could promise me that I was going to be cured at the end of this ordeal.
My perspective is very different now. I look at the world we live in as a diseased place where it is extraordinarily difficult to be a healthy person. You can 'do everything right' and still get cancer. The world is sick; it takes an iron will to be healthy.
I will be meeting with Dr. Peppercorn in a week and I will tell him that surgery is still not the right choice for me right now. I will tell him that I want him to be on my team...not on some kind of opposing team. My health is everyone's goal, I know that. Sadly I feel like I am trying to be some kind of emissary between East and West but it's like asking Suni's and Shiites to learn to respect each other. I feel that my relationship with Duke may very well draw to a close. This appointment will make or break that. If I get the sense that his attitude is 'my way or the highway' I will be putting my thumb out and on the yellow brick road again, looking for an oncologist who wants to dialog about healing.
Almost three weeks ago I had an appointment at Duke with my new oncologist, Dr. Peppercorn. He is the replacement I have been assigned to because Heather left the oncology department at Duke. That whole process has been very painful for me. I ADORED Heather with a high school crush zeal. When I opted against surgery and radiation in January she was against it, but supportive. She assured me that she would be my doctor no matter what, and she was actively listening and participating in my alternative choices. Then with out warning Heather suddenly stopped communicating with me. Emails were not being answered, or were routed to her nurse practitioner who was being very minimal and cold at best with me. At worst the NP's emails had what felt to me like a hostile and dismissive energy. I felt very unmoored and anxious because having a Duke oncologist on my team felt absolutely right, good and important. Suddenly I felt like I was left to float.
This went on for several weeks, and then I was told that Heather was on a leave of absence. I waited for about another month, and then tried to contact her again. This time I was told that she had left Duke. I asked if there was a way to contact her and say goodbye.
Eventually I pinned down an answer on Heather's whereabouts and she did answer a very personal email wherein I expressed how deeply sad I was to be losing her as my doctor. She replied and told me that she was only leaving oncology, but would still be at Duke. She stated that "I need a break from Oncology for a while. It was getting too hard to lose people I had known for so many years." When I wrote her back and asked her if I could still go to her for advice, she did not answer and I have heard nothing since. I can't help but feel like she has been stifled somehow. That because I have left the box I am now seen as a liability instead of what I am: a patient who is making my own choices, and who wants advice and perspective even if I choose not to follow it to the letter.
So, I had an appointment with Dr. Peppercorn. For me it was a check in. I wanted to know what he advised I do, even though I felt pretty sure I already knew the answer to that question. I also wanted to get a pulse on whether or not he would support me and work with me and the other members of my healing team. My meeting with him went well, I think. He did indeed spend 90% of the time we had using every tactic at his disposal to talk me into surgery. He was totally balls out on that too. He was unabashed about wanting me to be scared. His perspective is that I am in imminent danger if I don't do it. In his words he 'hopes I am still curable'. He asked me to think it over, and make a decision quickly. He said he felt like this was the missing piece, and if I did this I could then move on with my life and feel really good about the future. He left it on a confident note...a sort of 'I know once you really think about what I have said you will know in your heart this is the right choice for you.'
More importantly to me, he also expressed a willingness to work with my other folks. He was willing to share his notes, and he told me he would communicate with Jason at Natura and listen to his reasons for wanting to run certain labs and tests. He also ordered two labs to be done on the tumor samples that give information about how aggressive and proliferative the cancer I had was. He essentially told me that if he was given compelling scientific reasons for doing any tests or labs he would be willing to listen and work with the Natura folks. On that note he refused to run some labs that Jason had asked I have redone because they were totally normal the first time. He felt it was not necessary to re-run any labs that were in normal ranges to begin with. When I asked if he would hear why Jason wanted them re-run he said he would. I felt very good about all of that. He seemed to me to be very 'no nonsense' but also open minded and willing to listen.
I left the appointment however feeling very very heavy hearted. I was once again facing this huge decision, one that I had already made. It felt a little bit like going backwards.
Then, I treated it like I have treated every other big decision. I went to work.
First, I emailed two women whose blogs I read faithfully. Both of them had breast cancer and both of them are currently cancer free with out the use of ANY traditional treatment at all. I told them both how alone I feel, and how terrifying all of this is for me because I often feel like I am being some how subversive. It's insane to me to feel that way about not wanting to cut my breast off. Nonetheless, I feel this crushing loneliness here because there are no websites dedicated to 'Young Survivors Who Don't Listen to their Doctors." Much as I enjoy these two blogs, I also admitted to them both that it's still hard for me b/c they are both not in my demographic. Both of them are older, and at least one of them had an estrogen fed cancer. (I'm not sure about the other one). My cancer was 'triple negative' which is in a class of it's own in a lot of ways from what I understand. I can't help but wonder...does that make a difference? Am I in even more peril because of it? Many women I found that had estrogen positive cancer were glad because there are a lot of long term drugs given to them to suppress the production of estrogen in their body. It is a feeling of extra insurance to them. I was actually delighted when I found out mine was not estrogen fed. To me the idea that my body was creating this problem because of something that occurs naturally was really terrifying. Also, it was deeply saddening to me to think of being medically forced into premature menopause as a way of keeping me healthy. That too seems very backwards to me. Very out of sync with nature and trusting our bodies to be able to heal.
Both women wrote me back and were wonderful, supportive, and empathetic. They both encouraged me in their own ways to listen to my own truth and to trust myself.
The next week I scheduled an appointment for a thermascan. I had been thinking of doing this since talking to a surgeon in April who urged me to have one done and consider removing the tumor bed if it came up 'hot' on the scan. I wanted that further piece of information.
I also had an appointment with a therapist I have recently started seeing. She is a Kundalini Yoga teacher, as well as a certified therapist and I found out on our first meeting that she has counciled cancer patients for umpteen years! I did not even know that about her going in. I just knew that she was a therapist and that I would be able to resonate with her spiritually. My appointment with her was VERY powerful. She listened to me recount the past week, the appointment, the emails with the other women, and my endless list of self doubts, worries, weighings of pro's and con's etc etc and she said "I hear you keep saying that this doctor is 'trying to make you feel' this way or that." She also noted that giving up on the way I am doing things now is like giving up hope on my body...that this body I have right now is capable of being a whole and healed body as is. She said that this kind of hope and the joy I have had because of it is immensely powerful to the immune system and that I should not overlook that. Then she said "It's like this doctor shot an arrow of fear into your heart center." When she landed on that metaphor it all came pouring out for me. Yes..I am afraid. I am so afraid that I am just a naive little nothing who can't possibly know enough to be making these kinds of choices...who am I to think I can do this my way? I told her that I can't help but go to those dark places where I see my loved ones gathered around my hospice bed and I have let them down and it was all my fault because I was so stupid to think I knew what was best and I was now railing against the sky WHY WHY OH WHY did I just not do what I was told?? She asked me to use a Kundalini technique we employ in class to 'tune in' to our greater creative consciousness so I did. I called on my infinite creative higher self and I went into a really deep meditative state...and when I was there I was calm and I could hear my own voice with out the overwhelming babble of fearful voices. When I was there I heard what I needed to hear. Yes, I would consider having surgery IF there was cancer in my body again. Nothing else would be compelling enough for me. Even though I know that this is the most extreme circumstance and if it were to happen it would mean my health was in very serious jeopardy, that and that alone would be my sign that I had been making wrong choices. That was a powerful and simple truth that I knew all along, but felt too afraid to really land on and express.
That same week I also had an acupuncture appointment with Barbara. I told her that I had this nagging little spot on my back that has been bothering me on and off for months. What I did not say was it was accompanied by a little voice of fear in my head that kept whispering to me that it was bone cancer...doom. Barbara worked on my back and the nagging spot went away.
Let's not forget also that the same week I had this terrifying appointment with Dr. Peppercorn was the same week I got my period back!
THEN...last week Barbara contacted me to tell me that she had emailed Donald Yance directly with some questions I had felt I was not getting satisfactory answers from with Jason. Namely, I have asked Jason 3 times now to please put me in touch with other patients on the protocol I am doing. I especially wanted to be connected to any other triple negative breast cancer patients they might have. He never gave me a very straight answer on the matter, which had me feeling like "Okay, why don't these people want their patients to talk to each other?" The end result of this was that Yance has decided to take me on as his patient personally...which is a HUGE BIG DEAL because he is in such high demand that he does not take on new patients. I am totally floored. In an email he wrote back to Barbara he indicated that if I am his patient he can put me in touch with his other patients. (Jason was trained by him, but they have different practices).
THEN, I heard back from Dr. Stocks and he told me that my thermascan was completely clear. There were no signs of any vascular hot spots at all.
So...let me count it up.
My period came back + encouraging emails from women who are doing it naturally + powerful therapeutic session wherein I was reminded that I do know the answers to my difficult questions despite my fears + amazing acupuncture session with Barbara + thermascan results entirely clear + Dr. Narula gave me a years supply of evoidiamine + unexpectedly Donald Yance has offered to take me on as his patient = Dr. Peppercorn is probably not going to like my answer.
It's just this...in the past few weeks all I have gotten over and over again are affirmations that I am making the best possible choices for myself. I am not going about this naively. I am not waving my magic new age incense wand and hoping I'll just be okay (which is how I think a lot of people must look at me) I am constantly gathering these amazing and brilliant teachers and healers around me and what I have is a network of experts who offer advice and encouragement. I am vigilantly having my health monitored and looking for any sign that the protocol I am doing is not effective. IF it ever proved itself to be ineffective I am ready to face the music and admit that it is time for radical but hopefully life saving procedures.
Not that I tend to dwell in 'oh what if' land too too often, but I must admit that when this all began I lamented to myself that I wished I was brave enough to forgo chemo. I wished I was brave enough to just do it all naturally and trusted myself enough to know my limits. I was scared. I was 30 years old, and I was told I had a huge aggressive tumor that was swiftly making a b-line to metastasis. I was told that if it did that I was doomed. I was told that I basically narrowly escaped a death sentence and really noone could promise me that I was going to be cured at the end of this ordeal.
My perspective is very different now. I look at the world we live in as a diseased place where it is extraordinarily difficult to be a healthy person. You can 'do everything right' and still get cancer. The world is sick; it takes an iron will to be healthy.
I will be meeting with Dr. Peppercorn in a week and I will tell him that surgery is still not the right choice for me right now. I will tell him that I want him to be on my team...not on some kind of opposing team. My health is everyone's goal, I know that. Sadly I feel like I am trying to be some kind of emissary between East and West but it's like asking Suni's and Shiites to learn to respect each other. I feel that my relationship with Duke may very well draw to a close. This appointment will make or break that. If I get the sense that his attitude is 'my way or the highway' I will be putting my thumb out and on the yellow brick road again, looking for an oncologist who wants to dialog about healing.
Wednesday, August 20, 2008
I am totally awesome.
I am still really buzzed about getting my period back.
I was thinking about it, and I was told that it can take a couple of years for some women. And of course the big fear was that it was gone for good and I was sterile. I did a second ovarian repression shot in Dec, which was good for 3 months. So given that I got mine back in 6 months.
I am so strong, and my body has undergone amazing healing.
I am really stoked too, because now I can blame some of my bad behavior on my hormones. Like, last week when I yelled at the DMV clerk "I am SO GLAD to know that the state of NC punishes cancer patients!" Um, not my best moment. AND my utterly uncontrollable desire for chocolate last week, which has totally subsided this week. I am not sitting at my desk unable to think straight because I want a Kit Kat from the vending machine so badly yet at the same time I keep arguing and praying to myself 'make good choices....make good choices.....make good...F IT I WANT A KIT KAT!!!!!!"
Yeah, so so happy to put that all on my menstrual cycle. Yay!!
Basically I am totally awesome.
I was thinking about it, and I was told that it can take a couple of years for some women. And of course the big fear was that it was gone for good and I was sterile. I did a second ovarian repression shot in Dec, which was good for 3 months. So given that I got mine back in 6 months.
I am so strong, and my body has undergone amazing healing.
I am really stoked too, because now I can blame some of my bad behavior on my hormones. Like, last week when I yelled at the DMV clerk "I am SO GLAD to know that the state of NC punishes cancer patients!" Um, not my best moment. AND my utterly uncontrollable desire for chocolate last week, which has totally subsided this week. I am not sitting at my desk unable to think straight because I want a Kit Kat from the vending machine so badly yet at the same time I keep arguing and praying to myself 'make good choices....make good choices.....make good...F IT I WANT A KIT KAT!!!!!!"
Yeah, so so happy to put that all on my menstrual cycle. Yay!!
Basically I am totally awesome.
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