It has been a while since my last post......lots of life occurred, had to focus on my health more acutely due to exhaustion. I learned a big lesson here, mainly how much I try to keep up with others, instead of compassionately following MY needs.
So, back to my story......
My partner and I go home from Mayo Clinic, in shock, knowing I have a decision to make. We try to leave two days later on our vacation to California, only to find out that only one plane ticket had actually been bought, a mis-communication with the travel agent. I felt this peace come over me, I knew I needed to stay home and get my act together. Make my decisions. My partner felt it would be a "couple decision," which really translated into "Mariah, get the surgery, do what the doctors tell you, because I am too afraid to trust, I want you to live." As the days went on, I became more aware that my spirit was saying very loudly "no surgery! NO surgery! NO SURGERY!! I woke up crying a few nights later, knowing my spirit was telling me surgery was not the answer. D really wanted to hear me and honor my spirit, yet at one point, also out of intense fear, she in said to me "You act like you know more than the doctors!!" "Yes, I do" I replied "I know my body, my spirit." This was too much for her, she couldn't understand my thinking. All I sensed was control from her. I went to my meditation bench, asked for my healing that day, and came to a place of peace, knowing that I had asked and it was given.
And, just because you ask for something and know it is provided, doesn't mean it will be a piece of cake. It takes courage, it takes commitment, it takes letting go. Sometimes it feels like being in the dark. It's actually a jumping off place, into the unknown, into a totally new world of existence. There are no protocols, no tried and true steps to take. And, everyone has their own opinion on how to treat cancer. Just surf the internet, and you will find everything from Raw Food diet to relying only on Jesus to high dose Vitamin C IVs to Vibe Machines to ingesting massive amounts of cayenne pepper -- and, this is barely scratching the surface!
So, I decide to fly Montana, both for treatment daily with Dr. Tim, and also for a break from my partner. We were on very different pages, the incompatibility between us was never more apparent than now. I left, angry towards her, angry that she was pushing me to get surgery, angry that she wasn't able to fully support me, angry that it seemed she was more worried about money than my existence.
Anger.....a symptom of my condition, my liver was trashed, I was SICK. Past history of drinking alcohol, a mild case of hepatitis A, twice mononucleosis, candida, hypoglycemia (I had a reading of 28 when I finally went in to a naturopath in Portland, OR in 1989...normal is more like 70 to 100), asthma, depression, anxiety, stress, standard american diet, low self-esteem.
Dr. Tim treated me with love, respect and kindness, adjusted my spine daily, and gave me herbs, homeopathy, and lymphatic treatments as needed. I decided to do a juice cleanse while there (which I came to understand later was probably the wrong thing to do as it was too taxing on my already hard working body). He has been successful with many cancer patients, including his girlfriend who had an ovarian tumor. It was now in remission, growth abated at 12cm....huge by my standards. My largest was half that size. I was sure I was going to leave my partner......I was going to stay in Missoula, keep getting treated by Dr. Tim, heal, etc. And then, with 4 days left before returning to Minocqua, I had a dream about my partner, I realized I loved her, tremendously. Despite our differences. Blind or real love? Co-dependency? I wasn't sure, I just drew myself back to her.
It was a scary time, however, I was dealing with my own mortality right in front of my eyeballs. Not trusting at times if Dr. Tim's treatment would work, wondering if he was too on the fringe. I also got high dose Vit C IVs from Dr. Chris White, another naturopath in Missoula. Those treatments are controversial. It was my insistence that I do this, from my "research" on the web, Dr. White would not treat me at the dosages typically recommended, due to a person typically needing a catheter (at dosages of 70g plus, the veins shrink up.....hey, just like chemos!!). The highest dosage I got was around 35g, and they made me feel better, but something I did during those 3 weeks in Missoula turned me into an orange. Partner told me a few days after I returned that she had been shocked to see how orange my skin was.......
I bought a scaled down version of Dr. Binder's light beam generator machine and used it at home. I took short term disability so that I could focus on my healing. I did it all, acupuncture, reiki, reading Abraham books, searching the internet for more treatment options, how to eat, ordering books from Amazon almost every week, to the point where one day I realized I was not resting....I was busy almost non-stop, almost as exhausting as when I was treating patients. I had to cut back, I had to do something different.
Around this time, my partner began to look for a position with more money as I wasn't sure if I would be able to return to work, or how much I could work. She was being considered for a very good administrative position in a village near Green Bay. We went to her first interview. I found a local alternative newspaper, opened it and read about a woman who would be giving a talk in a few days at a space called Beacon House. The woman was Efrat Livney, from Madison, WI. She had had stage 4 cancer, ovarian cancer, and healed herself from it. I wouldn't be in town for the talk, so I looked her up on the 'net, found her website, and gave her a call.
Efrat was extremely helpful, calm. She told me about her treatment from Dr. Zhengang Guo, L.Ac., Ton Shen Health, a master chinese herbalist in Chicago. (Note: I found out a few months ago that Efrat had opted to have surgery and participate in a chemo clinical trial during her work with Dr. Guo). I read about him on his website (www.liferising.com), felt this connection to him, called up the office, and was able to get an appointment THAT Sunday (the day I was scheduled to arrive at Cancer Treatment Centers of America in Zion, IL, to start investigating the "integrative approach" despite Dr. Tim's warnings that it would be no different than the allopathic route.....).
Dr. Guo is a quiet, small, kind man. After reading my health history, and doing his pulse diagnosis, looking at my face, tongue, fingers, he told me he would try to help me, but wouldn't promise anything. He was upset that I hadn't come in to see him 10 years ago....well, I just had to let that one go. He gave me herbs, cookies with herbs in them, a reishi and black tea, and a green tea, and told me "come back in 1 month if no feel better, otherwise 2 months if feel good."
Saturday, September 13, 2008
Tuesday, July 29, 2008
From fearful ignorance and avoidance to Trust
Benign! For 4 months, anyway.
I received a call from the surgeon, telling me she recently attended a seminar on rare gynecological cancers, realized my pathology fit one of those, and had it re-read. Being that it was 1996, the pathologists didn't have a huge understanding of granulosa cell tumors, it seems to be a recently investigated phenomenon in the cancer world, and so mine was deemed borderline. Two of the four markers used to determine type were positive for GCT (granulosa cell tumor). It was recommended I get the prophylactic total hysterectomy, and the debulking/staging surgery.
No way. I was home taking care of my mother who had been diagnosed terminally ill with bronchial cancer two months after my emergency surgery.
I went for a second opinion at University of Wisconsin-Madison Hospital. Met with Dr. Julian Schenck, MD. After reviewing my slides, his recommendation was follow it with blood tests, CT scans on a scheduled basis. So, off I went, getting repeat CA-125 and Inhibin assays, CT scans -- all showing normal.
A good 7 years passed, life was grand with new relationship, new career ahead of me in physical therapy. Lots of adventures, traveling in BC, learning to telemark ski in Montana, whitewater canoeing, paddling Bowron Lakes and BWCA. A big move to Pacific Grove, CA, bike trip in Napa and Sonoma counties, move back to Montana a year later when my partner could not stand CA anymore.
There was something amiss, however, in 2003.....I was growing tired, bitchy, periods getting farther apart, then the "re-appearance" of my right ovary (which had been removed during the '96 surgery). MD in Montana suggested removing it, "just to be safe." Being I was finishingup my last semester of school, I opted to wait. Had it checked a year later, MD in Monterey, CA said it looked like a regular ovary, probably grew back because it is possible to miss removing all ovarian material when there is blood, and pus, and gunk in the pelvis.
2005, April.....period now 3 or 4 months late, and one shows up.....black flow. I knew, with a panic, what that meant. Off to the obgjyn in Missoula (Dr. Schenck had recommended him, as Dr. Burke had done an internship with him), ultrasound showed it looked very different than 2 years prior. New blood test ran....this time Inhibin B, and that was sky high (over 500). His recommendation via a gynecological oncologist in Spokane, WA: Total hysterectomy (TH) and debulking and staging.
No thanks. The MD thought I was crazy. I remember him trying to tell me, in a panic, how this could kill me if I didn't have surgery immediately.
I had begun working on my health in 1999 with a naturopathic physician, Dr. Timothy Binder, also a chiro and acupuncturist. Amazing healer, herbalist, quantum mechanics/physics thinker. His encouragement was to leave in the tumor, as removing a primary tumor causes other dormant cells to suddenly pick up steam and grow like crazy. I asked the obgyn about this, he looked at me like I was nuts! Just recently, I ran across a video on Jerry Brunetti who healed himself of non-Hodgkins Lymphoma with natural methods/nutrition.....he mentioned the research which substantiated this. I will get the information to you on this later.
Pressure from the significant other to have the surgery......she was VERY scared, pretty much to the point of screaming at me "please, Mariah, get the surgery!!!." Being scared and unsure myself, and co-dependent, I agreed to have surgery, but on my terms, as a compromise for my relationship, and as decided after speaking with 3 naturopaths about what options were possible for me. I opted for laproscopic removal of the tumor only.
Everything went well, Inhibin B levels came down (2 months later, 50) quickly, energy level came back. Bike trip in the Gulf Islands 2 months later. That winter, my first telemark skiing hut trip in Canada......the Kokanee Glacier Hut. Frustration with work (or the lack of it in Missoula), some bitchiness coming back, my partner's controlling behavior.....
We move to northern Wisconsin, Minocqua, my heart space from my childhood. Northwoods, lakes everywhere, beautiful skate skiing, biking. The community is quite different than Missoula, is very conservative, no organic food market (I spent the first week there in a panic, looking, scouring all the grocery stores in towns within 50 miles for where I could find good organic food, I was really worried, being an organic foodie, that I was going to starve eating the same food day in, day out, and was worried about the quality of the food). Work is ok, but not my passion to work at a catholic hospital. Aware, too, that I feel "in the closet" being back home in Wisconsin. I start my first day of work "hiding" my relationship, indicating to people at work that I am single. Noticing I am getting a bit more tired as the months go on.........
Eventually, I get a re-test on the Inhibin B......it comes back in the 500's again. CT scan........that little persistent cyst on the backside of my liver, oh maybe 3mm big, is know about 2.5cm square. Enlarged lymph nodes, too.
I meet with Dr. Weiss, from Marshfield Clinic, a medical oncologist. He "breaks the news." Being a tumor in the liver, he says I only have a few months to live. He suggests chemo.....a particularly intense regimen of Bleomycin, Ectoposide and Cisplatin (BEP) for a number of rounds, repeat CT scan, if no change, then biopsy the tumor. I respond with "what about the research that indicated BEP was not an effective chemo for GCTs?" He looks at me like I am some kind of cretan, addressing the god, "how dare she?" He denies that to be true, I know otherwise, I have the abstract of the research in my bedside table drawer..... Later, I learn he has the reputation for over-treating people with chemos.....
So, D and I are both freaked out. But, we have enough in us to ask for a second opinion at Mayo Clinic. And, I contact Dr. Binder. He suggests I come out to Montana for treatment with him. I begin to consider it. Being in northern Wisconsin, conservative land, where MDs are king, I know that I need to be with a healer, someone who can speak my language, who can bolster my resolve, get me back on the track I wanted to be on 2 years prior.
1.5 weeks later, I am at Mayo. I grill them on the pathology, their treatment suggestion. I want to know if Marshfield was reading things right. Nice doctors, very open to discussing. They say that they treat many women with GCTs, the women resign themselves to repeat surgeries "every few years." Their recommendation: take down the liver, cut out the spot, stuff it back up there (my words, but that is my feeling about the whole thing) and, again, the TH and debulking. And, to have the surgery within one month. The surgeon and the gyn onc almost lost their teeth when we told them what Dr. Weiss gave as a prognosis......partner then had the presence of mind to ask them "I know Mariah, if she doesn't have surgery, how long will she live?" Dr. Wilson replied, "oh, 7 to 10 years...."
As soon as Dr. Wilson gave his prognosis, I had one of those deep, epiphany moments......"I have time to heal myself!"
I received a call from the surgeon, telling me she recently attended a seminar on rare gynecological cancers, realized my pathology fit one of those, and had it re-read. Being that it was 1996, the pathologists didn't have a huge understanding of granulosa cell tumors, it seems to be a recently investigated phenomenon in the cancer world, and so mine was deemed borderline. Two of the four markers used to determine type were positive for GCT (granulosa cell tumor). It was recommended I get the prophylactic total hysterectomy, and the debulking/staging surgery.
No way. I was home taking care of my mother who had been diagnosed terminally ill with bronchial cancer two months after my emergency surgery.
I went for a second opinion at University of Wisconsin-Madison Hospital. Met with Dr. Julian Schenck, MD. After reviewing my slides, his recommendation was follow it with blood tests, CT scans on a scheduled basis. So, off I went, getting repeat CA-125 and Inhibin assays, CT scans -- all showing normal.
A good 7 years passed, life was grand with new relationship, new career ahead of me in physical therapy. Lots of adventures, traveling in BC, learning to telemark ski in Montana, whitewater canoeing, paddling Bowron Lakes and BWCA. A big move to Pacific Grove, CA, bike trip in Napa and Sonoma counties, move back to Montana a year later when my partner could not stand CA anymore.
There was something amiss, however, in 2003.....I was growing tired, bitchy, periods getting farther apart, then the "re-appearance" of my right ovary (which had been removed during the '96 surgery). MD in Montana suggested removing it, "just to be safe." Being I was finishingup my last semester of school, I opted to wait. Had it checked a year later, MD in Monterey, CA said it looked like a regular ovary, probably grew back because it is possible to miss removing all ovarian material when there is blood, and pus, and gunk in the pelvis.
2005, April.....period now 3 or 4 months late, and one shows up.....black flow. I knew, with a panic, what that meant. Off to the obgjyn in Missoula (Dr. Schenck had recommended him, as Dr. Burke had done an internship with him), ultrasound showed it looked very different than 2 years prior. New blood test ran....this time Inhibin B, and that was sky high (over 500). His recommendation via a gynecological oncologist in Spokane, WA: Total hysterectomy (TH) and debulking and staging.
No thanks. The MD thought I was crazy. I remember him trying to tell me, in a panic, how this could kill me if I didn't have surgery immediately.
I had begun working on my health in 1999 with a naturopathic physician, Dr. Timothy Binder, also a chiro and acupuncturist. Amazing healer, herbalist, quantum mechanics/physics thinker. His encouragement was to leave in the tumor, as removing a primary tumor causes other dormant cells to suddenly pick up steam and grow like crazy. I asked the obgyn about this, he looked at me like I was nuts! Just recently, I ran across a video on Jerry Brunetti who healed himself of non-Hodgkins Lymphoma with natural methods/nutrition.....he mentioned the research which substantiated this. I will get the information to you on this later.
Pressure from the significant other to have the surgery......she was VERY scared, pretty much to the point of screaming at me "please, Mariah, get the surgery!!!." Being scared and unsure myself, and co-dependent, I agreed to have surgery, but on my terms, as a compromise for my relationship, and as decided after speaking with 3 naturopaths about what options were possible for me. I opted for laproscopic removal of the tumor only.
Everything went well, Inhibin B levels came down (2 months later, 50) quickly, energy level came back. Bike trip in the Gulf Islands 2 months later. That winter, my first telemark skiing hut trip in Canada......the Kokanee Glacier Hut. Frustration with work (or the lack of it in Missoula), some bitchiness coming back, my partner's controlling behavior.....
We move to northern Wisconsin, Minocqua, my heart space from my childhood. Northwoods, lakes everywhere, beautiful skate skiing, biking. The community is quite different than Missoula, is very conservative, no organic food market (I spent the first week there in a panic, looking, scouring all the grocery stores in towns within 50 miles for where I could find good organic food, I was really worried, being an organic foodie, that I was going to starve eating the same food day in, day out, and was worried about the quality of the food). Work is ok, but not my passion to work at a catholic hospital. Aware, too, that I feel "in the closet" being back home in Wisconsin. I start my first day of work "hiding" my relationship, indicating to people at work that I am single. Noticing I am getting a bit more tired as the months go on.........
Eventually, I get a re-test on the Inhibin B......it comes back in the 500's again. CT scan........that little persistent cyst on the backside of my liver, oh maybe 3mm big, is know about 2.5cm square. Enlarged lymph nodes, too.
I meet with Dr. Weiss, from Marshfield Clinic, a medical oncologist. He "breaks the news." Being a tumor in the liver, he says I only have a few months to live. He suggests chemo.....a particularly intense regimen of Bleomycin, Ectoposide and Cisplatin (BEP) for a number of rounds, repeat CT scan, if no change, then biopsy the tumor. I respond with "what about the research that indicated BEP was not an effective chemo for GCTs?" He looks at me like I am some kind of cretan, addressing the god, "how dare she?" He denies that to be true, I know otherwise, I have the abstract of the research in my bedside table drawer..... Later, I learn he has the reputation for over-treating people with chemos.....
So, D and I are both freaked out. But, we have enough in us to ask for a second opinion at Mayo Clinic. And, I contact Dr. Binder. He suggests I come out to Montana for treatment with him. I begin to consider it. Being in northern Wisconsin, conservative land, where MDs are king, I know that I need to be with a healer, someone who can speak my language, who can bolster my resolve, get me back on the track I wanted to be on 2 years prior.
1.5 weeks later, I am at Mayo. I grill them on the pathology, their treatment suggestion. I want to know if Marshfield was reading things right. Nice doctors, very open to discussing. They say that they treat many women with GCTs, the women resign themselves to repeat surgeries "every few years." Their recommendation: take down the liver, cut out the spot, stuff it back up there (my words, but that is my feeling about the whole thing) and, again, the TH and debulking. And, to have the surgery within one month. The surgeon and the gyn onc almost lost their teeth when we told them what Dr. Weiss gave as a prognosis......partner then had the presence of mind to ask them "I know Mariah, if she doesn't have surgery, how long will she live?" Dr. Wilson replied, "oh, 7 to 10 years...."
As soon as Dr. Wilson gave his prognosis, I had one of those deep, epiphany moments......"I have time to heal myself!"
Tuesday, July 8, 2008
Welcome to my blog site
My friend Emily showed me this site recently, she is the writer of Our Lady of the Broadreach site, dedicated to her love affair with sailing, Chicago, her cats, and other life experiences. I have been feeling the urge to write about my healing process, both for my own emotional and spiritual therapy and to be of help to others going through a similar process.
I was diagnosed with a borderline ovarian cancer in 1996, after a tumor on my right ovary ruptured one morning. It was unknownst to me and my doctor that I had a tumor growing in me, partly from the lack of insurance 2 years prior when I began having unusual symptoms (increased weight gain, irritability, menstrual periods getting farther apart and when I did have one the menses was dark to black in color, clumpy), partly from being too busy (or too afraid) to go back to an MD. She told me I was probably peri-menopausal, at age 36.........all the while, it was a cancer developing. These tumors, granulosa cell tumors, have a tendency to torse (or twist), and, thus, mine ruptured one morning. Painful! I thought I was having bad menstrual cramps, but the pain grew, the nauseous feeling developed, and so I went to my naturopathic physician.......she palpated the right lower abdominal quadrant ONCE and I was in extreme pain!!! She was too freaked out by it all and sent me to the original MD, who again had to palpate the quadrant, but then loaded me up in my car and drove me to the ER. A tumor was found with ultrasound, and I was readied for surgery the next morning. I was also told to round up a potential gynecologic oncologist who could do more surgery if they found it to be cancerous (they wouldn't do anymore surgery, just sew me up and send me to the gyn onc). Being as I was living in Missoula, MT at the time, my sister-in-law in Portland got me set up with a female gyn onc there.
I remember waking up after the surgery, and the surgeon saying to me "it's benign!"
I was diagnosed with a borderline ovarian cancer in 1996, after a tumor on my right ovary ruptured one morning. It was unknownst to me and my doctor that I had a tumor growing in me, partly from the lack of insurance 2 years prior when I began having unusual symptoms (increased weight gain, irritability, menstrual periods getting farther apart and when I did have one the menses was dark to black in color, clumpy), partly from being too busy (or too afraid) to go back to an MD. She told me I was probably peri-menopausal, at age 36.........all the while, it was a cancer developing. These tumors, granulosa cell tumors, have a tendency to torse (or twist), and, thus, mine ruptured one morning. Painful! I thought I was having bad menstrual cramps, but the pain grew, the nauseous feeling developed, and so I went to my naturopathic physician.......she palpated the right lower abdominal quadrant ONCE and I was in extreme pain!!! She was too freaked out by it all and sent me to the original MD, who again had to palpate the quadrant, but then loaded me up in my car and drove me to the ER. A tumor was found with ultrasound, and I was readied for surgery the next morning. I was also told to round up a potential gynecologic oncologist who could do more surgery if they found it to be cancerous (they wouldn't do anymore surgery, just sew me up and send me to the gyn onc). Being as I was living in Missoula, MT at the time, my sister-in-law in Portland got me set up with a female gyn onc there.
I remember waking up after the surgery, and the surgeon saying to me "it's benign!"
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