Friday, November 4

     Yesterday turned out to be very weird, since my friend Lindy I was supposed to be staying with ended up in the hospital after a heart thing at the end of a yoga class. Beware yoga! The docs still aren't sure what happened to her. My friend Adrienne called this morning and offered (as long as I did dishes) to let me stay with her and her husband and two young daughters. Yippee! Lindy is still on my mind and I stay in touch with her and her fiance.

     I had blood tests today at the hospital for the liver folks. I asked them to check my platelets, too. By the way, I took Deanne Smith's advice and had RED MEAT last night for dinner. I think I'm going to start feeling better soon.

     I rode the bus from the hospital and to a park'n'ride, spent a little bit of time downtown at noon. It was great people-watching – lots of characters, smart young women, important looking men, ordinary people, all moving, moving, moving. I'm looking forward to my return to Denver, and hope I can survive the move itself. All looks well, so far.

     And now, dear friends, I am going to nap.

Thursday

     Someone suggested to me yesterday that I write a daily blog and then I will have a history of what went on during this time. The last couple of days I've been feeling really tired and on the depressed side of things. The fatigue was reminding me of my liver disease and how tired it makes and that compounded the depressed feelings. I need more coffee!!!
    
     I went to see the medical oncologist 2 days ago and he had good news for me. I am cancer-free now and he said if I had chosen lumpectomy, they would probably need to perform more surgery. I'm not thrilled I chose mastectomy, but I think it was the right choice for me with my tiny boobies. The doctor also said he believed I would not need chemo, which was very good to hear. We will get an Oncotype result back in a couple of weeks. The lab that does this looks at the tissue from a molecular level and can tell aggressiveness of the cancer and other things. Still, Dr. Kabos doesn't believe it will hold any surprises for me. My platelet count could be affected by some types of chemo, and he wants to avoid that if possible. Normal platelets are around 150,000 and mine were 68,000 going into surgery (from the liver disease). This puts me at risk to bleed. Anyone know any recipes for building platelets???

     I'm fighting my sadness with music, writing, reading, and lots of sleep. I don't want to take any more pills. Oh, coffee is prescribed, too. The friends I'm staying with now don't drink coffee, but I'm moving to another friend's house today and she has the C stuff. Yay!

     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?

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.

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.

A Sisterhood

      I joined a sisterhood on Friday, September 16, 2011. It’s a special sisterhood with a large and global membership. The women are in their 30s (some even in their 20s) all the way into the 80-somethings. They are strong. They persevere. They persist. They complain and bitch. They sing and dance. They celebrate all the sisters’ victories, large and small. They meet all over the world in small groups and talk, cry, laugh, share stories and diets. Their families and friends walk for them, run for them, bike for them, and raise money for research for the thing that binds them together. They wear pink ribbons. They have all had breast cancer, from stage one to stage four, and many more of them are surviving it now, because of the Sisterhood and its ability to use its collective voice to raise money for research on the disease and the cures. Some of the Sisters don’t survive the disease. They are mourned by the Sisterhood, their children, their families, their friends.

     I was shocked to learn of my new membership. Since that time I have attempted to keep a lid on the Worry Box. It helps. I am learning to depend on and trust the professionals I have chosen for my care – so far a surgeon and an oncologist.

     I was also very angry at first. Angry when I learned that I needed a biopsy. I told my doctor’s assistant that I wasn’t going to do it. Dr. Joud must have known I would say that because the assistant said, “Dr. Joud really thinks you should. It’s 1.5 cm.” Damn! I trust him. I knew I would have the biopsy. I quit being angry.

     I remembered the Sisterhood. I thought of friends I have who have had their brushes with the Grey Ribbon. Chemotherapy. Radiation. Surgery – would you like (a) lumpectomy with a dash of radiation, or (b) mastectomy? How about this? I don’t like the choices. Bought a book called Eat to Live written by an M.D. I want some other choices, please. I’ve got the Sisterhood. And I have my friends and family.

Love.