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!"
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