Don’t Get Mad Educate

After awhile I realized a comment I got is another good topic for a blog post. So….

Why did I start this blog?  Do I have way to much free time? Am I obsessed with my health?

I started the blog after some on-line people with Cowden’s Syndrome convinced me they were interested in my story.

 Cowden’s Syndrome means I have a muted P Ten gene. That gives me a higher chance of getting many different kinds of cancer.

If you are interested in the dictionary definition of Cowden’s Syndrome, please look it up.

People with CS have an 85% lifetime chance of getting breast cancer. At 42 I was diagnosed with early stage breast cancer. This was my first mammogram.

My sister looked shocked and really scared. I still remember her asking where did this come from?  Currently I rotate between breast MRI’s and mammograms.

This past October I had a breast biopsy because of radiation issues.

Most people with CS have thyroid issues. That can be anything from nodules on the thyroid to thyroid cancer. I have had way to many thyroid issues.

They began in the 70’s when I was 17 and my favorite choker didn’t fit.

1 in 200,000 people have Cowden’s Syndrome. Of those 200,00 eight percent will get colon cancer. You got I’m in that eight percent. My colon cancer was hereditary.

For me it meant surgery, chemo and a major chance in the way I eat. I am really close to my being NED for five years.

This doesn’t include the doctor check ups for my AVM. It’s really big and painful. Heaven help you if an issues comes up and you forget about a doctor check up.

When the first thing is taken care of the second turns into your next issue.

There are the little things two. Most hats don’t fit. I stare at anyone with a really cute hat. Especially in Cleveland weather.

Dyslexia is something you never out grow. Over the years I have gotten really good at hiding it. I don’t do math after 8 pm.

You would want to read a blog I wrote if I was really tired.  Can’t forget my trick to tell right from left, or where a stamp goes on the envelope.

I have a good life. Two of my pictures are in our library exhibit this month. They look pretty good.

Do Not Get Mad Educate!


Everything is connected

Maintaining good health needs to be a priority for everyone. Most things seem to be different for me. Healthy eating started back in 2008.

My clothes were getting tighter, I had a shirt I never wore that I really liked and I could get it over my head. Looking back I felt really bad and Dave’s insurance offered a rebate if we tried Weight Watchers.

So to my surprise Dave wanted to join to. We went to meeting changed our eating habits and lost about 50 pounds each.

Ya I lost weight, felt better but have not counted a point. I wasn’t hungry so I didn’t eat has much and lost weight. In November of 2008 I was diagnosed with stage 3 colon cancer.

So my health, eating habits and cancer diagnosed are connected.

Part of our healthy changes were eating a low salt low fast diet. Who knew tomato sauce is full of salt. Not to long a go there wasn’t food in my house if I didn’t have

spaghetti sauce and ketchup. Not any more. Now I have three kinds of mustard. We marinade chicken in anything from spices and lemon juice to honey and mustard.

Fried food doesn’t taste good, it upsets my stomach. I look for recipes that have less than  500 mill of salt.

We made an effort to continue to try new dishes. Since the first of the year we have found new Weight Watchers crock pot dishes that we love.

I have kept the 50 pounds off. Last weekend I tried on a pair of skinny jeans. They looked fit. So I’m wearing my new skinny jeans to the art show at the beginning of February.

Eating and health are connected.

I still like the Cleveland Browns. Yes I lived on the west coast when they had a winning season. But I like the Browns. Yesterday the big news around here was the Browns

new head coach Mike Pettine. He was the former defensive coordinator of the Buffalo Bills. The 2014 football has to be better than last year.

I love the Cleveland Indians too. The family goes to at least one game a year. My brother’s family came from Tennessee and watched the Indians win.

Any sports event in Cleveland involves lots of walking. One of my issues is pulmonary hypertension. For me that means I have to stop and catch my breath going up the steps.

At the Indians game our seats were at the very top. So I think I had to stop twice. We even went to the Q and saw LaBron James play basketball.

Time with family,enjoying sports, lots of walking and health are all connected.

I love to try new dishes. I’m over 50 and own a pair of skinny jeans. My art is going to look really good up in the library show next month.

At my last appointment my heart doctor said he is very surprised I am still around with all my issues. Dave says my job is to stay to keep doing what I’m doing.

Everything is connected. Thank you to the person who inspired this post. I had no idea what to write about.

Two New Year’s Resolutions done

There is still snow on the ground. It’s really cold.Another day to stay inside.

I don’t want to say this to loud but my first medical appointment is February 5. So far I have made it through January without seeing the doctor.

I can’t remember the last time I went a month without a medical appointment.

February 7th  I see the lung doctor for pulmonary hypertension.  I need a prescription refill. My cough is back and at times I cough things up.

The cold has made everything hurt worse.

But I have done couple of things from my resolution list all ready. I wanted to continue to do something to advocate for colon cancer.

Last year I wrote a letter to the editor about March being Colon/Rectal Cancer Awareness Month and the importance of getting a colonoscopy.

Well I sent my letter in and the next day the news in Medina was all about our local superintendent of schools and his great big contract.

So my letter never made it in the paper and the superintendent was fired and has lots of court actions pending. I will try again this year.

I am going to be part of a hereditary colon cancer awareness video  from rare action that is due out on u tube February 28 for Rare Disease Day.

My father passed away of colon cancer in the 70’s. I was diagnosed with colon cancer at 49.  Cowden’s Syndrome, and a family history give me a higher cancer risk.

This afternoon I invited my friends on Facebook to the Aquarius Exhibition, an art show. I plan on having two dog pictures in.

First time I have exhibited anything since high school. Painting my mom’s cast in second doesn’t count.

Well some of these friends are planning on attending!!! Who Knew, yes I am still the quiet kid in the corner.

February 1st stands to be a long day.

Weekend Shopping

It been another cold weekend in northeastern Ohio. Dave and I went shopping in Wooster yesterday. We came home to three bean chili in the crock pot.

Who knew Wooster still had great clearance sales.

I have never been much of a  shopper. But anytime Dave is willing to look  for him too. I’m there. He got a great deal on a shirt he’s wanted since November.

Still have to thank the customer service person who helped him. He got his size and the same low price the store had with free shipping. Thanks Kyra!

One of our stops was a local craft store. There is no turning back now. We bought two frames, two wire hanger kits and spacers.

All this is for the Aquarius Exhibition at Medina County Library. The exhibition opens Friday January 31.

There is an open reception February 1 from 1:00 pm to 3:00 pm with awards announced at 2:00 pm.

 I’ll be doing lots of clapping for the winners. Any one who is a member of the county art league can enter two pictures.

I decided on entering two of my dog pictures. One is Martha the sheepdog. The other is Daisy our boxer mix dog. She is at the window with her head turned.

Daisy spends a good portion of her day looking outside. Last month we had three deer in the back yard.

I have been in two art shows and the first one probably wouldn’t count. I was probably seven in second grade. My mom saved her cast.

I remember one side of the cast I painted a little kid hand traced turkey. I think there was one winner and the rest of us got second place.

The other show was a culture festival. My art teacher required everyone to submit something. That was 1975 and I was probably 15.

I have been and still am quiet. D an art teacher last year talked me into joining and displaying my pictures. So here goes nothing.

There is an honorable mention and a peoples choice award. Who know? I will get at least two votes. Stay tuned.

Once Upon a Time

Hope its in the Genes

Hope its in the Genes

Once upon a time there was a conference on Cowden’s Syndrome.

This is your typical conference. Health care professionals come to get more knowledge and understanding of Cowden’s Syndrome.

Persons with Cowden’s Syndrome come to give health care professionals an understanding of what living with Cowden’s is about.

The conference was held in Nashville Tennessee on a weekend. That way my daughter can attend the conference, see her mom and learn about Cowden’s.

Everyone with CS I have met online would be about to attend. During the weekend we would attempt to have coffee and talk.

THe conference would have speakers with knowledge in breast, colon, kidney, skin, thyroid cancer.

Dr. E and J will update the group on research being done.  Persons with CS are able to talk to the group. Hopefully this gives the medical community

a better understanding of what its like to life with CS.

Attendees would be able to pick what speakers they heard, ask questions.

The conference would have an area for those 18 and under.

They  discuss  youth issues ex. what its like to miss school for doctors appointments.

Everyone makes a video for U tube about Cowdens. The video would go viral and be shown at the Super Bowl.

Come Monday morning people across the country are talking about CS.

The last night has great country music, dancing and good food. A vote is taken about the color for CS.

Plans are all ready in the works for a conference in Cleveland.

Everyone leaves hopeful.

Hopeful the next doctor they see has heard of CS. Hopeful because they met someone who understand what they are going through.

Hopeful about research being done and someday cancer will be a thing of the past.

 Why post this?  I am hopeful.This is fiction. But things are getting better.

Winter painting

I have been working on a pastel of my dog. But with the cold weather and not feeling great last week, I was tired of using the darker colors.

I wanted to paint something that used brighter colors and was in the environment. My other requirement was no food.

The last time I ended up using the bananas for Dave’s lunch. So I chose some of my pill bottles. The shapes of the bottles were different.

Some of the vitamin bottles had great colors. I got to use different shades of green and not paint plants. Green is one of my favorite colors.

some of my medicine

some of my medicine

Technology problems

We are having technology issues.  I attempted to return an email from my new I pad. That email never made it out of my outbox.

After talking to our internet provider they did all they could do and suggested we contact Apple.

So we talked with Apple and thought we had the problem taken care of. Nope!!! I tried to send that email again and it STILL didn’t work.

So Yes I still remember you!!(medical student I met while in the hospital March of 2013) Glad to hear you graduated and are back in Cleveland.

Any help I can give you to get it published I will.

The camera was acting up too. Dave took couple of pictures of my for the hereditary Colon Cancer Syndrome video. I will know tomorrow if the pictures turned out.

So Dave took a picture of me with just the basic information. I am a survivor of breast and colon cancer. I also have Cowden’s Syndrome. My paper was not big enough

for everything I wanted to say.  Like I knew my family history. My dad passed away before 50 of colon cancer. Colonoscopies help save lives.

The prep is not pleasant but neither is chemo or radiation. I had my right colon removed. That means at times I have digestive issues.

Colon Cancer can happen to anyone, it’s not an old people’s disease.

Disney picture

Disney picture

Rare Disease Day is February 28 2014. More updates on the hereditary Colon Cancer Syndrome Video.