Thursday, October 27, 2011

     I received a call from my surgeon yesterday and she had the results of my pathology report. Even though we're still talking about a cancerous growth in my body, the news was optimistic. The tumor was larger than originally believed (1.7 cm on biopsy and PET scan), at 2.2 cm. (I was shocked by that. I let that thing grow in my body for probably 2 years at the least.) It had clear margins and, best of all, there were no cancerous lymph nodes. There is no radiation recommended. Now the lab will run an onco-type and look for the genetics in the tumor (???) and make recommendations for chemo or no chemo based on what they learn.  Tomorrow the Liver Transplant Committee will take a look at the pathology report and come back with their suggestions and possibly a timeline. At least here in Denver, I feel like I have my care teams based in the same building and on the same computer system.
     I don't like having all these care teams and health problems, though. I think certain factors (high levels of stress from long-experienced PTSD) have pointed me in the direction of an impaired immune system and resulting auto-immune disorders beginning at age 40 with a diagnosis of asthma. I ultimately cleared that with the help of a naturopath and diet (removing all sugar and clearing long-abiding fungus infections). Then came impaired white blood cell production, possibly from taking Dilantin for seizures for 20 years, and that remains. If I get an infection in my body, my WBCs don't balloon up in number to fight it off; I've added this important piece of information to my health history I carry with me all the time. Next came the liver disease. And now the cancer. Both of those are auto-immune disorders.
     I'll be doing a lot more research into this topic of PTSD and later auto-immune disorders. I think in the meantime I need to do all the things recommended to me for years but never followed through -- meditation, yoga, vegetarianism and now vegan or nutritarian. That last term always gives me a giggle. "I'm a nutritarian," she said snidely, followed by a subtle but distinct sniff as if she were checking me for meat smells.
     Plans continue for a departure party for me with my new-found friends in Florida. I feel like I made friends with Florida this time around. Violet the Cat certainly likes it and she will miss that big front yard she made her own. I wonder what she will think of snow.
    I'll write again in a day or so. Maybe some recipes of a nutritarian. Who knows?

Monday, October 24, 2011

Nutritarianism and Health

I heard a new term today, the latest in food and health -- a nutritarian, not just a vegan. I had my first vegan meal tonight...well, except for a little butter to go with the delicious cornbread with no dairy or egg. I think it's the first of many vegan and nutritious meals. I'm going to call someone tomorrow who was told by doctors that there was nothing else they could do, and he needed to go home and spend the rest of his very short life with his family. That was two years ago and he's back at work now.

I want to believe in miracles, in turning my life around with healthy eating. I promise not to rant. I'm not a good rant-er besides. I'm skeptical, very much so. But other things have happened because of prayer and love and yes, good diet.

Stay with me. Tomorrow I go to see a nurse at the Breast Center and she will remove the dressing. I found myself ready to break down into sadness, felt the tears pushing up, but I was too tired to let it happen. It will come, and I will ride the wave and move to the next place soon enough.

Here's How It Works, Dear Doctors

I wrote an introduction to my meeting with my doctors in Colorado and am including it here. I felt like I needed to be clear about what I expected from them. Here it is:

Statement for oncologists at Univ. of Colo. Hospital Breast Center

First of all, I want to thank you for fitting me into your schedule and seeing me so quickly. I have a lot of faith and trust in my liver care team and felt I would find the same integrity of care here.

I was delivered the diagnosis of Primary Sclerosing Cholangitis on February 1, 2006. I had several hospital admissions for cholangitis and abdominal from then until Feb. 2008, at which time I had a major internal bleed from esophageal varices. I also had a grand mal seizure at the end of that day I was admitted; I had bled out my seizure meds. From that admission till today, I have had only two admissions for cholangitis and one this year from infectious colitis.

I was put on the liver transplant list after the bleed in 2008 and my MELD (Model Endstage Liver Disease) score, last measured, was 8.

In June 2011, Dr. Lisa Forman recommended live donor transplant because of greater chances of getting cancer the longer I had PSC, and because of my age (64) and relative good health and lower surgical risk currently. I have a potential live donor now.

I was diagnosed with breast cancer, receiving the news on Sept. 16. I was angry, frustrated anxious. I was thoroughly pissed off. I received the news on the phone from one of my doctor’s staff members. I was driving my car at 60 mph on a busy, unrestricted-access highway in Hernando County. I finally pulled over when I realized the conversation I was having. This staff member (not a nurse) told me that Dr. Joud wanted me to make an appointment with Dr. Tang (onco) and with a surgeon. I couldn’t cry. I could barely register anything but disbelief.

I am here in Denver because Dr. Tang would not call Dr. Forman until one month following the surgery, even though I’d told him how important to me that he communicate with her. Unless she is communicated with adequately, I will keep looking until I find a doctor, an oncologist and surgeon, who will carry out my wishes. And communicate fully – FULLY – with me and my liver team.

I want the truth and the risks and all scientific and medical information from you and the other oncologists I will be seeing today.

I am hoping for the best care here at the University of Colorado Hospital Breast Center. I’m scared, I’m angry that I have cancer at all. I have a pending situation with my liver right now: a recommendation for “further investigation” after a regular CT scan, then ultrasound, and MRI ordered by Dr. Forman. 

More later, folks.

Tuesday, October 11, 2011

Cancer Sucks

I don't want anyone to think I'm just going around with this big ol' grin on my face and having a great time, and that the only addition I have is Lance the Lump. Nope. I got a new radiology report on last week's MRI of my liver (Oliver) and it says further investigation should be done. Crape!

All I can say is that I have symptoms:  dramatic drops in blood sugar (in public if that's what I happen to be doing at the time), inexplicable loss of weight, wanting to eat every bit of food in sight (keep a close eye on your plate or I will suck up your food, too), body aches (that really pisses me off), fatigue (as if Oliver didn't give me enough), and headaches. Yesterday I had a drastic drop in blood sugar while visiting the Butterfly Pavilion with Adrienne and her 2 daughters. I was able to hold Rosie the Tarantula in my hand before my blood sugar went bye-bye.

Adrienne took immediate charge and guided me to some snacks and a sugary drink and then took me home and fed me a sandwich and chocolate-mint ice cream that I wanted simultaneously, and apple slices. Nap time after that. Big Nap. Adrienne is a breast cancer survivor (5+ years) and has been extremely helpful and supportive.

I will be posting daily while I'm in Denver. Much is happening every day. And night. I can't sleep at night. Sucks. I signed up for the November Novel Writing Month yesterday. Write 50,000 words in a novel form over 30 days. It'll be interesting to see what evolves during that month with my writing. I have some ideas, and I'm collecting images to inspire my writing.

Love to you all, and thank you for your support and love and care. Life IS good and I will pass this period sooner than I imagine now.