I am cancer free. 2009 is the year I got my "sugarbaker's special" and all the complications that came with it! I had my final surgery to reverse the illeostomy in September. Wow, I really am cancer free! It is a whole new world! Let the fun begin . . .
I was diagnosed with peritoneal mesothelioma in 1999. I have been swinging back and forth between fierce battles and boat rocking ever since.
After several years of unexplained abnominal pain, I finally found a nurse practitioner at my university that pursued my case and subsequently led me to be in surgery for what we then thought was a fibrosis tumor. I was a junior at Northern Arizona Unversity and looking forward to my 21st birthday. I underwent surgery on November 11th, 1999. Veteran's Day. My dad later gave me the Purple Heart he earned during Vietnam. He said I deserved it. I don't remember much from that day. I remember riding with my mom to Phoenix that morning and having to pull over on the side of the highway to throw up. The surgery was a mess. I had wonderful gynecologic oncologist that expected a fibrosis tumor, which is not what he found. When I later read the surgical report, I can picture him cutting me open and looking into my abdomen and muttering "oh, shit." They scooped out as much as they could until my blood pressure dropped and they had to close me back up. Turns out, I had internal bleeding and was rushed back into surgery a few days later. From what I understand, I had two very close calls that week.
They were able to remove 70% of a grapefruit size tumor in my abdomen. My slides were sent to Harvard and it was informed that I had a very rare form of cancer called peritoneal mesothelioma. My doctor told me he couldn't help me and I would need to do research and find someone else more qualified. I also remember him telling me to not worry about the statistics. If a doctor were to tell me that 80% of the poeple died, I needed to remember that 20% would make a full recovery and I should always treat myself as if I were the 20%. I consider myself very lucky to have had someone direct me to this line of thinking at the very begining of my journey.
Mom and I researched and found a couple of oncologists and surgeons located around the country that specialized in my type of cancer. And when I say a couple, I mean a couple. I went to MD Anderson in Houston where I was prescribed a chemo drug that I chose not to take. The doctor there really didn't have any experience. She had only seen one other case like mine.
We also flew to Los Angelos where we saw another surgical oncologist. I remember him reading to me out of a medical book that mentioned something about a woman that had this type of cancer and lived 30 years. That seemed good to me. In hind sight, I don't know what treatments or how many surgeries that she had in order to live that long. I should have paid better attention. The problem back then was that I had just had surgery and almost died. I really saw no reason to take that risk again when I only had a few centimeters of tumor to even deal with. All these doctors wanted to open me back up and get me on chemo.
I also went to see a doctor in Scottsdale, Arizona who had no small reputation for dealing with cancer. Dr. Abram Ber is a naturapath and an M.D. I started with him in December after my surgery and have been with him ever since. Nothing too invasive, mostly just supplements, dietary changes, and some IV vitamin therapies.
I had some symptomatic ascites (fluid accumulation in the abdominal cavity) in 2002 which we treated by just getting me back heavily on my meds and diet. Thank God for Mary and Cord. Cord (my boyfriend at the time) was an absolute hard ass when it came to keeping me on my meds and working out. Mary quit her second job and became my personal grocery shopper and chef. I was enrolled at NAU again at the time and might have been enjoying the college pass times a little more than I should have. But we quickly got me back on track.
In 2005, I very rapidly filled with ascites again. I had something like a 36 inch waist. Shanna's version ends here. Following is the list of procedures performed during March 26, 2009 surgery (taken from dr. notes..pardon my spelling)
1. Excision of tumor abdominal wall
2. Repair incisional hernia
3. Exploratory and biopsy
4. greater omenectomy
5. lesser omectomy
6. cholecystectomy (removal of gall bladder/part of bowel
7. appendectomy
8. partial stripping of right hemidiaphragm
9. pelvic peulonulomy (sp?)
10. hysterectomy & peritonectomy
11. bilateral ureterly?????
12. left eot???tomy
13. Interop chemo
14. right chest tube
15. loop ileostomy
Spleen, bladder were okay. Surgery took 12 1/2 hours, 8 units of blood given, 8 liters of acites removed, 25-30 specimens sent off for evaluation. The biggest concerns would be the tumor transitioning from cystic to diffused (solid tumor) and also whether it has invaded lung cavity.
