Happy Mothers Day

Happy Mother’s Day to all the moms.

I get yearly colonoscopies. Yes with a family history of colon cancer, my colon cancer and having polyps on top of polyps at my first colonoscopy that’s why.

After awhile you remember the nurses.

On Mothers Day I will be doing my colonoscopy prep. My colonoscopy is sometime Monday afternoon. My doctor doesn’t have morning appointments anymore.

Thats all right with me. The nurses call her the McGuire of polyps. NO they haven’t come up with anything better for the prep. I usually ask.

I don’t do anything with lightly in it. But other the years I have noticed you don’t have has much to drink as when I first started.

I’m still gathering my clear liquids. I like anything cold. My brother says eat less a couple of days before the prep.

My sister says make sure you use a straw. She talked about having candles and music in the bathroom.

Yes I will get through it. I keep thinking about the warm blanket right before they put you to sleep.

When You wake up there are pictures of my polyps to take home. Last year I had a fair prep with 27 polyps.

This I hope to have a good prep with more polyps removed.


New opportunities, Looking forward to More!

Global Genes has a contest.   It’ s more of a challenge, use six words to  describe your illness.

Its taken me a while to come up with something to submit.  It started out has big pain in the butt. That was describing my Avm.

AVM’s are part of Cowden’s Syndrome. My AVM is very large, started in the left hip area. After all these years and all the procedures I still have lots of pain.

I submitted New opportunities, Looking forward to More.

It fits the positive me. Not the me at the end of the day in pain.  I have had many new opportunities. I started doing my art again.

Yes I’m still learning. But I am getting better. Through art I have met some really nice people. The art league had a demonstration given

by a gentleman that I have two of his pictures hanging in my house. Afterward I got to talk with him. The library exhibit was a good learning experience.

It was my first time to  gallery sit. It talked to lots of different people, encouraged some preteen interested in art and made sure people voted for best in show.

I have met lots of different  people on-line.

There blogs are encouraging and I have learned many things. Lately I have learned so much about PAH.

Next Sunday I am attending a brand new PH support group. I have never been to any PH support group.

March was Colon Rectal Awareness month. I was part of a Rare Disease Day video. If you haven’t seen it yet, its on the P Ten Facebook page.

Who knows what new opportunities I will have.

February Appointment

IMG_0161Our Weather  has been really bad. So far kids in my school district have had nine days off because of bad weather.

This sounds old but I don’t remember getting that much time off. This winter we had lots of snow and temperatures below zero.

Kids were out of school for at least two days in a row right after Christmas.

Today we have wind enough wind to have high wind warnings till tomorrow.

I have stayed inside most of the time. When it’s that cold the PAH makes it hard to breathe, my arm throbs, and I can not feel the bottoms of my feet gets worse.

That is left over from chemo. That gives me lots of time to work on my art.

However the reason I have only had two doctors appointments this year. My last appointment was the lung doctor.

My cough is back. She did blood tests and scheduled other pulmonary tests for June.

Dr F talked about the research. They are studying changes in BMP pathways. Some genes result in vascular disease and some genes result in colon polyps.

I have both, PAH and lots of colon polyps, along with Cowden’s Syndrome.

So after talking more with the doctor I am part of another research study. Like the last couple of studies all they want from me is my blood.

Then I am finished. I will not know the results of the study or if my blood helped. That is all right with me.

I do remember my dad taking part in research during his colon cancer in the 70’s.

My sister is in a couple of studies, one for American Cancer Society and one studying the sister who did not get breast cancer.

So it’s a family thing.

We had an escort waiting to escort us to the lab. Once at the lab he waited in line for me.

Another doctor talked to Dave and I till they called our name. She talked more about the study.

I asked why only three tubes and not enough  stickers were on the table.

The lab tech only had three tubes waiting and there was no bag for the study blood. I handed him the paper I was given, he went and asked the doctor.

He needed my paper and five bigger tubes for the study blood.  So he drew the blood walked out with me and gave the blood to the doctor.

She thanked us again and made sure we knew the way out. Another appointment finished.

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.

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.