Wednesday, December 7, 2011

A Beautiful Day

     After all the very cold and snowy weather over the past week in Denver, the temperature is finally going up over 40 degrees today. I just walked outside to check my mailbox and I felt the warmth from the bright sunshine.

     I also slept a nearly normal night last night and got up at the reasonable hour of 6:30 a.m. Violet has been sitting in the sun nearly all morning. We are happy creatures.

     I thought of going to a movie but will wait for the weekend and possibly find someone to go with. I want to see The Descendants with George Clooney, filmed in Honolulu. A friend of mine here who was living in Honolulu at the same time I was said it has lots of familiar scenes of the city of Honolulu, and not just of Waikiki. I look forward to seeing it.

      I will go grocery shopping today. Just enough to accommodate my limited facilities. My furniture arrives Friday or Saturday and that will make a big difference in life around here. I have times when I'm scared and overwhelmed by what I have done ... !!! This is one of those times. But I will make it through and everything will work out fine.

     Stay tuned. And enjoy whatever weather you are having right now. It's proof you are alive.

Friday, November 4, 2011

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, November 3, 2011


     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!

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.

Sunday, September 25, 2011

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.


Tuesday, August 30, 2011

Why I Am Writing This Blog

     I haven't written a post in nearly 10 days. I read something that made me stop and question why I was writing a blog. Most bloggers have a particular crusade or business or something they want to teach and that's why they blog – to attempt to make a dent in the public's awareness of their ideas or product or message they are teaching. I read a blog called Courage 2 Create by a young writer, Ollin Morales. His blog, in less than a year, was judged one of the top 10 blogs in the country. There are a lot of blogs – probably hundreds of thousands – and yet his was in the cream of the blog crop. He wrote a post asking other bloggers "Why" they were writing, and encouraged them to answer that question. He told his reasons and they include some very philosophical answers, other than his obvious one, to teach people how to write. I began to question "Why?" and it took me quite awhile to sort through the reasons.
     Before I started the blog, I hedged around for a long time. Stalling and stalling. So I looked at that and asked why I did that. I was scared to put my real thoughts and feelings out there. I've written for years and have published very little. It was the same fear that stopped me. I didn't fear rejection; I feared being read and known.
      I had kept a deep, dark secret for decades. I even kept me from knowing it. I repressed a memory and it became a habit to hide, even from myself. It was difficult to overcome that habit, just as it was hard to confront the secret finally and start untangling that. If anything, I think that is my main reason for writing this blog – to purge myself of this mental habit of hiding me and what I think and feel. It seems strange to say that, but that is the point, yes?
      Another reason I write the blog is to encourage all of you to use writing to unearth anything uncomfortable for you and to heal from it through writing privately or publicly. I stress the importance to student writers to hold their writing private so they can be free to express whatever it is they feel, whether it is hatred, love, desire for revenge, and other feelings that might be judged as anti-social. You need the freedom of your privacy to grow and confront yourself. I started writing daily 20 years ago and never stopped. I didn't intend to write for this long, but it is still working for me. I work out issues in my journal first and then bring them out in the open to the appropriate person. But I also write little stories and poetry in my journal, too. I record those and share them. It is with my journal and my writing, though, that I allow myself to be my most vulnerable.
     With the onset of liver disease I felt I had something I could share with others. I had discovered, or uncovered, that many, many people suffer from a multitude of chronic illnesses. Their daily lives are impinged upon, stressed out by all the different ways that people's lives can be cramped and limited by a daily set of symptoms and remedies. I have learned to live with the fatigue of PSC and make space for it. I know if I have a really good day, the next day I may not repeat that at all but be very tired. I have to give into it. Some days I feel like doing nothing at all, and I have learned to let that be. It goes against my grain. I had a lot of energy before liver disease intervened. Others have lived with their chronic diseases or disabilities since childhood. That would be extremely difficult but I am certain they have learned to both compensate for and accept these constraints. Some of the most inspiring people I've met have chronic and even terminal illnesses, and they have developed an unbelievably happy outlook on life. I'm not one of them. I struggle with depression and go up and down with it. But I write for them with the same compassion as anyone else with a chronic disease or disability.
     That's about the "why" of it for me. It helps to know why I'm writing this blog. Maybe I won't write about going to IKEA for the first time – or I will and I'll add that I felt glad that I made a trip that was  physically hard for me, but that I was so excited about it I ignored my tiredness. I hope you keep reading. And writing your own stories.

Sunday, August 21, 2011

First Trip to IKEA

     I made my first venture into IKEA in Tampa in Ybor City. What an adventure, an experience, a cultural binge. My sister Diane and brother-in-law Jay made the hour-long trek to the store with the goals of introducing me to IKEA and to eat their Swedish meatballs meal in the cafe. It was marked down to $2.99! Lots of other markdowns, too. I fell in love with their shelving and storage ideas. So many! My new bookshelves are already picked out. And I think I can actually buy a bedframe – whoo-hoo! The next trip I make to Denver I will visit their newly opened store – the second largest IKEA in the world. I am IKEA-struck!

    I've been resting and reading and writing today. On Friday Diane, Jay, and I joined Muslim friends and acquaintances for a Ramadan dinner where Pakistani food was featured. Phew! It was hot! But very tasty. I'll go again next weekend and look forward to that.

     The partial colonoscopy and endoscopy on Friday at 6 a.m. went well. The doctor talked to Diane and me afterward, but I remember nothing he said. Except something about "everything was okay." Whatever. I'm tired of thinking about it.

     The two big dogs (standard poodle and black Lab) are in my room, scared of the thunderstorm. Violet deals with them. Right now she's ensconced in the bathroom cabinet which she can handily open and climb into. The dogs are sleeping happily.

     Lots to do next week. Write a newsletter for the Crescent Community Clinic and go to an interview in Crystal River to tutor elementary and middle school kids after school. Have a good week!

     I do have some secret news right now, but hanging onto it for's good.

Friday, August 19, 2011

What I Imagine

     I receive a Daily Writing Prompt every morning from my writing mentor, Cynthia Morris of in Denver (though she's in Paris for the next three months); I'm paid up for the year. In an email, she gives all the DWP folks a short phrase to start off a 15-minute freewriting spree. Lately I've written a couple of fiction pieces during that time, and when I wrote down the prompt from Thursday, I knew where I was going with it. Not necessarily how it would end up, but at least how it would start. Here it is.

     Safe at home, he took off all his clothes and stood in front of the mirror to view, all on his own, his surgical scar. He reached up and with his fingers lightly traced the whole scar, starting on the right side. It was long and extensive. It traced a Y on his body from just below his ribcage on one side to deep on his belly in the middle and extended all the way to the other side of his body. There was his belly button still peeking out. When he finished touching the still-red scar, he covered his right side with his right hand above and below the rib cage. The roux-en-y incision was for this, this warmth he felt below, his new healthy liver.

     He didn't know what to think anymore. He'd lived with illness for the past eight years and now, thanks to James (who had a matching scar on his body), he had a chance at life with health and energy and without wondering when the next symptom would begin, when a new infection would put him in the hospital, when were the next round of CT scans, -oscopies and biopsies of all kinds, how fatigued he'd feel, how much he itched. All of that he was still getting used to setting aside in his mind. He didn't have to be sick again. Oh, there was a 35% chance the PSC would return. But right now, this moment and many, many more to follow, he didn't care at all. His life opened to him again.

     He hoped he would be smart this time. "Damn," he thought, " this is like returning from the dead. That's just what it's like." He wanted to call James right now. He knew James wasn't feeling as good as he was physically. He had just taken 60% of James' liver and it would be growing back to 100% very quickly. His new portion would grow to 100%, too.

     He felt huge, he felt full of life, he was ready to jump back into life. His doctor had warned him not to go too far too fast, though. "I feel so tempted, though," he murmured. He felt the chill in his apartment and put some fleece pants and a hoodie on. The incision was still sore but he'd had no complications in the hospital and his skin was healing well, the doctors and nurses had told him. God, nurses and doctors won't be a huge part of my life anymore. Mentally and emotionally, he was making huge adjustments to this almost unimaginable physical transformation.

     He had made it through. He was just now taking it all in. Yes, he needed to call James now. He needed to talk to someone, and this was someone who would always share this experience with him.

Okay, end of story. But it gave me a goal for being. I can handle this positive outcome.

Thursday, August 11, 2011

The Day

     The sun is shining this morning – first time in 3 or 4 days. I lose track of time and days when it rains all day and night. The temperature outside has been cooler and much more bearable to go outside, between the raindrops. But today, back to the reality show called Florida in Summer.

     I have been especially tired the last few days. It's a combination of the rain and not feeling well. I've gotten a lot of reading and napping done. I did go see my gastroenterologist for ongoing problems with my tummy, and he wants to do another colonoscopy and endoscopy next week. I thought one for the year was enough on colonoscopies. But no! My doctors are trying to solve the mystery of my slow leak of blood somewhere and why I feel so crappy. Good, I say! I like doctors who are detectives and care about their patients' well-being.

     I'm leaving the house today. Do something fun. Tomorrow "The Help" will start showing in the local theater and I want to see it this weekend. I read the book and it was compelling, authentic, and well-written. Having spent summers in northern Alabama with my grandparents, I know how the system works and the book helped me understand even more. I'm going to write more poems for the August Postcard Poetry Fest, too. Here's one I wrote last week:

Dividing life by decades and activities
there is a link:  creative action
threads its way in and out, through
and sideways, drops, returns.
But constant.
Driven by dreams.

Have a creative day.

Saturday, August 6, 2011


     I've made some major decisions in the past two days. I am moving back to Denver this fall (before it snows) to proceed with my quest for health and a live donor transplant. Once I finally realized, thanks to my friend Maureen's simple, clear statement, that my number one priority was my health, I lined up everything behind that. I know I want whatever surgery I have done (live donor or The Wait) at the University of Colorado Hospital where I have a superb, supportive, positive medical team. My real home is Denver, though I will miss the warm tropical weather in winter in Florida. And the friends I've made here and my family, not to mention the reconnections with people I've known since kindergarten, for heaven's sake! I will be able to return for doses of sunshine and warmth in mid-winter.
     I will be sending out a plea to friends, acquaintances and family members for a potential live donor. I've written the email. I want a few friends to read it and help me tweak it before I send it. If you want to receive a copy of the email, please send me your email in a message on Facebook.
     I am having some ongoing health problems now, but I'm also exercising every day now and will be joining the YMCA this weekend so I can start walking indoors. I want to be as ready as I can for surgery.
     When I told my sister Diane I was moving back to Denver, she was happy for me and, as usual, had some excellent ideas for me. I'll be working on finding a place I can afford to rent. My brother-in-law Jay was sad I was leaving. He and I have spent lots of time at Starbucks discussing politics and I'll have to call him from Starbucks in Denver to continue that. I worked on Diane's campaign for state representative last year and have become quite the political buff now.
     This is a rather disjointed post, but I'm too excited to keep my mind in one place for very long! Be well and I will be writing soon.

Wednesday, August 3, 2011

Moving Onward, Upward

     I unclogged my brain and I'm ready to take some important steps now. Unclogging usually comes to me through writing and action, and I've done both. I am going to actively seek a living donor for my liver transplant.
     I belong to a PSC support group online (remember? primary sclerosing cholangitis - PSC) and there was a letter last week from a member who had decided several years back not to go for transplant. She's in hospice now and very happy with her decision and current situation. I thought about that a lot.
     It finally came down to this: I'm a fighter and I've always believed I would live a very long life. I've always believed that life was meant to be happy and productive and, for me, creative. I didn't consider this woman's alternative for very long. It works for her, but it would not ever work for me. I'm also a wimp and hate pain and discomfort and do everything I can to avoid it! I watched my brother die of melanoma 10 years ago, and he was the same way, a fighter. And he lived for 5 years after diagnosis, a record for most melanoma patients. He was injecting curative medicines during the last week he was alive. A fighter. So maybe it's genetic. Dunno, but I've got that spirit, too.
     I have a lot of preparation before I'm ready for surgery – getting documents revised or made, checking prices of anti-rejection medications, finding caregivers for post-surgery, and so on. The preparing energizes me. I'm acting on my own behalf. And that's the best thing all of us can do for ourselves. No one else can, or is responsible to, meet our needs and discover our own heart's desires.
     If you have any ideas for me, please pass them along. I'll keep you posted on my progress!

Sunday, July 31, 2011

Decisions to Make

     I'm in a decision-making mode right now and I've learned, after leaping to many decidedly dramatic changes, to let the mulling take its course and go through the gray place first. Without procrastinating, of course.
     When I visited my hepatologist at University of Colorado Hospital Transplant Center in Denver in June, she recommended the live donor option for me. And that I should have it done there since they have so much experience and a world-renowned transplant surgeon, Dr. Igal Kam. I was caught off-guard by the recommendation, but I have decided this much: I want to go for it. It means a lot of positive change for me.
     I heard this story recently on the news and it inspired me. A Catholic nun needed a kidney transplant but she was still working as a teacher and doing okay. She became sicker, though, and was facing several hours a week of dialysis, which would force her to quit teaching. She fought back. She went to her email address list and to everyone on it she sent an email in quest of a live donor. She received about 20 offers and at least one was a match. She received her new kidney and returned to teaching. She said she was overwhelmed with the response to her plea and overjoyed to discover so many exceedingly generous people.
     I felt buoyed, happy about this woman's pluck and tenacity and courage. I have the first two, but right now I'm blowing real hard on the itty-bitty flames of courage. It seems so much to ask anyone to do...for me.
     Oh, my insurance covers all the live donor's costs, even travel and lodging before and after the surgery. So it's not that. The Transplant Coordinator and her team of nurses, technicians, and doctors do all the evaluation, and I trust them completely. A live donor can back out at any moment – even on the way to the OR. I want it that way. Freedom.
     I have more mulling and writing to do. And I'll feed my courage more of whatever it needs. (More ice cream, maybe?) I'll make a move soon. And stay out of the direct sun so it doesn't dull my senses. It is so blooming hot here!

Wednesday, July 27, 2011

Chronic Illness

     Chronic illnesses abound these days. Some people get them when they're very young, even born with them. Some people acquire them over time. And by the time we've passed middle-age and are headed toward "older," more and more human beings have a chronic illness or two or three. I acquired one at age 24 – seizures, which fortunately are controlled almost completely by medication and lifestyle changes. Asthma arrived at around age 40, and I eventually went to a homeopath in Denver who helped clear it up with some major diet changes, and I don't have to take daily medication. But 6 years ago, at age 58, when my life was really starting to shape up and make complete sense to me – with satisfying work, challenges to my intellect and creativity, and all those rewards, I acquired an autoimmune disorder of my bile ducts (they carry the toxic waste that the liver creates from filtering bad things out of your body). It's called Primary Sclerosing Cholangitis or PSC. The bile ducts get hardened on the outside and inflamed on the inside and basically start shutting down. Now the toxic waste gets trapped in your liver and starts scarring the liver tissue first and then destroying it, also known as cirrhosis. I have cirrhosis now and I've been on the liver transplant list for 3 years now.
     PSC is rare. It took 8 months from the first onset of symptoms to diagnose. When I tell someone I have liver disease, the first thing I clear up, whether they bring it up or not, is that the cause was not excessive drinking of alcohol. That's the knee-jerk reaction when someone hears "liver disease." As the disease has progressed, I've had many hospitalizations from infections of the bile ducts (cholangitis) and also one from internal bleeding. That was when I got listed. On a daily basis, I experience a lot of fatigue and cannot work regularly. That sucks. There is a national scoring system based on 3 blood tests that determines when you are eligible for a transplant. But there aren't enough livers to go around, so you have to be pretty sick before you are considered for surgery.
     There are a lot of blogs out there about chronic illness and I can recommend some of them to you. One that comes to mind first is called Chronic Babe. Type it into Google and you'll find it. It doesn't matter what severity your chronic illness is – the dailiness of it can be very draining on your body, your mental health, your spirit. I do a lot everyday to deal with that, and I'll be sharing more about that as I continue to post.
     And I won't forget to write about Florida and its politics! As for Florida weather, there's a hurricane forming in the Gulf now that the meteorologists are predicting will head for Texas. Ha! Floridians know hurricanes do what they damn well please.

Sunday, July 24, 2011

Sometimes Sundays...

     I got bogged down by the early oppressive, sweaty, nasty heat of the day and a search for Violet the Cat. I eventually had to call on the services of my sister and brother-in-law's (Diane and Jay) black Lab, Nimitz. Jay, Nimitz (on leash), and I flushed Violet out of her favorite hiding place. The little brat. The picture of Jay on one side of her and Nimitz and I on the other side, all yelling and barking reminded me of cattle-herding that I used to do in Colorado, and I started to say "cattle" but it stopped at "cat-" just as Violet gave Nimitz one huge, open-mouthed hiss and tore off towards the house. I was so mad at her but I couldn't stop laughing because we had just herded a cat. But it was only one cat. I go through all the emotions – anxiety, the pictures of her injured, anger at her for not responding – and get hot and sweaty, too. I took a shower and fell on the bed for a couple of hours.
     The rest of the day was spent indoors – lunch with a friend and a movie in an icy-cold theater. Florida is a challenge in the summer for everyone. Then I see a couple of old Floridians sitting in the front of (our only) Starbucks, midday, not completely in the shade, and I just walk a little faster toward the door.

Saturday, July 23, 2011


     This is a brand-new blog. I also have a website which I'll keep when I learn what to do with it ( But all of a sudden today, I was offered a Blogspot blog, and I thought, what the heck. I've been wanting to start communicating to my peeps and to meet new peeps - FOR MONTHS! I have to dive in somewhere! So, here's my dive - splash! splash! splash!
     I'm not sure what my focus will end up being. I have a number of choices, but two stand out - chronic illness and organ transplant, and politics especially from Florida. This is a very wacky place to live even if you just consider the terrain, the differing environments, the gators, the amazing birds, and even more the amazing (in so many ways) people. Then if you throw in the demagoguery of the political creatures that attempt to run the state and the counties with the stranglehold that they do, you have a mix that can't be beat by any other state in the country. Even California, folks, which looks tame next to Florida.
       I will LIVE for your comments. Seriously. I would love to hear what you like, don't care about, what you wonder about....and on. I'm going to write daily, even if it's a sentence or two. So, stand by!