Genetics Everyone is different

A couple of  new  friends encouraged me to start writing. I  have still my doubts. One of the things I am learning is everyone’s journey is different. Genetic testing found me. True cancer runs in my family. My dad passed away from colon cancer at 42. The other side of the family has health issues too.  Thyroid problems are like wearing glasses, both have been around for a long time. I got pointers from my sister on what to expect about the mammogram.  My Breast cancer at 42 surprised everyone. My first mammogram was a baseline mammogram, it wasn’t suppose to find an early stage breast cancer.

Cleveland Clinic

Early 2008 I was in Cleveland Clinic,  J came in my room from genetics. She explained about PTEN gene and Cowden’s Syndrome. Yes that sounded like me, but I was having heart failure problems. I just wanted my medicine adjusted to feel better and get back to work.  J came back with  Dr. Charis Eng MD. PhD. of the Genomic Medical Institute at Cleveland Clinic. J talked more about Dr. Eng, her research  and  I think she did a family tree. I finally agreed to get tested. They took a whole lot of blood. I forgot to asked how long the results would take, how much does genetic testing cost or who was paying for the testing. I felt better and went back to work.

Carry On Nurse

Carry On Nurse (Photo credit: Wikipedia)

Fast forward to January 2009. The day before my colon cancer surgery, I was  at the main campus of Cleveland Clinic meeting with my colon surgeon. There are lots of forms to  sign. Different nurses approach me about helping with colon cancer research, being on there registry. In the middle of all this J comes in the room and says yes I have Cowden. J talked about my many new options about my breast. I was hot, tired, scared. Waiting for me at home was the colon cleaning prep. Tomorrow was my colon cancer and liver biopsy, J is tell us I can get my breast removed, right colon removed tomorrow. They would only have to put me to sleep once.

Everyone is different. I learn that every day. Cancer is hard and it doesn’t matter what kind of cancer or how anyone deals with it. All cancers are different, not better or worse just different. Last year a female family friend passed from cancer. She had ovarian cancer since 2007. The same stage has my colon cancer. My sister knew her since brownies. We rode to high school together.  She  was in the Navy  just like me.  Ya I understand!

English: A 20-year-old cat that looks tired be...

Boy this gets old.  Happy New Year to me, all kinds of symptoms start, doctors appointments,  scans and tests. That is how I know it’s January. The AVM is getting larger and more painful. Yes I’ll go through everything to feel better  but I am tired of having to. I know

what to expect and it was not fun. Every AVM procedure I have to stay at least over night. If there is a problem with the IV I have met Nancy the nurse who does problem sticks. Getting to the operating room can take for ever. When I leave the prep area it’s always with

out my glasses.I can not see much without my glasses.  So If there is a wait, I am stuck in the waiting area listening to television wishing I don’t need to use the bathroom. If I do it’s a pain to get the nurse and find my way back to the bed squinting and holding the back

of the gown so I am not flashing others. . Yes they will come and get you, but there is a chance you might wait again  wait  in the corner of the hall. Finally in the operating room, I have gotten everything from smiles from students  to upset doctors that I am the next

 case. Lord help you if they need to do a pregnancy test right before they put you to sleep.  Ok sometimes I have had a problem when I woke up. I do understand I’m just really tired I have to do it again. Then there’s my hubby waiting. I can tell how he is doing if his leg is

twitching. Yes I am going can’t wait!

Fulton Tire Shop

Fulton Tire Shop (Photo credit: Jon B. Swerens)

In February I have round two. I had early stage breast cancer in 2002. That was long before Cowden’s Syndrome. I think back on my first mammogram. I was forty-two and a little late getting it. This mammogram was supposed to be my “baseline.” The doctor said no

big deal. “RIGHT”  My attitude was I’m keeping my breast, don’t want to lose any body parts today thank you. So I had a lumpectomy and radiation. I am fair-skinned. During the trail run a tech told me I was going to get really burnt!! and the gowns were in the corner.

He was right I got really burnt. The skin area on my left breast is still red. Years later I got a lot of bumps under the left breast. The bumps got bigger, uglier, rubbed the bra area till it bleed, and itched like crazy.

Marie Tucek's

Marie Tucek’s “Breast Supporter” (Photo credit: Wikipedia)

I have not worn an underwire bra in a long time, deciding it

was ok to sag. Years went by. During this time these bumps continue to get bigger, darker, and itch. I showed nurses and they had no idea what it was.Last year’s mammogram is a story in it self.  My primary doctor referred me to a dermatologist. It took about six

months to get that appointment. He took pictures, did biopsies but was concerned these bumps might be a sarcoma from radiation. I flashed more doctors had more biopsies. The bumps were ok but that follow-up appointment is in February. Ya, I am going to that one too.

No I do not have my hat!!

Last night I measured my head. My head was bigger than anyone at home. Yes I knew I have a big head.  I know doctors have measured my head a lot. My daughter was born with a big head. My husband has a baseball hat collection. I have never liked hats.

Brownies, Girl Scouts, marching band, going to watch the Indians,working with food  and the US Navy all had hats.

Ohio is the coldest its been in two years and I can see the need for a hat.

Winter Hat

Winter Hat (Photo credit: Geoffery Kehrig)

I put on a cute pink hat I got from the sale area last year. Thought it was cute and a great deal. NO IT DOESN’T FIT. I understand if it’s really cold and you don’t have a hat on.

*I think I’m getting better at this!

All Kinds of Pain

INSURANCE

 Because of the pain of my AVM, I ended up flying to my niece’s wedding in October from Cleveland to Nashville. The flight first flight was so bumpy we were only given water and airline peanuts. The second flight was

bumpy enough I used the bag in the front seat. It ended up I left my jean jacket on the plane. Went back to get my jean jacket, ended up falling getting out of the plane. I broke a bone in my ankle and a bone in my foot.

Nashville International Airport

Nashville International Airport (Photo credit: Paul Lowry)

As a kid I remember getting worried when we didn’t see my grandma at the airport. She was in the front seat of the golf cart getting a ride. My mom was stunned. Later in live I found my mom getting a ride in the airport golf cart. She enjoyed it. At the Nashville Airport I continued a family tradition, riding in the golf cart to meet my daughter. The look on her face priceless.

English: A picture of a Club Car 84 golf cart....

English: A picture of a Club Car 84 golf cart. Italiano: Foto di una golf cart. (Photo credit: Wikipedia)

Yes I stayed for the wedding.  It goes down as one I’ll never forget first one I had been to on crutches. Yesterday I talked to the third person from the insurance company about filing an appeal. Yes I met my

deductible  Cowden’s makes sure of that.Right now we owe over five hundred dollars because of miss coded claims. I filed the claim  on-line yesterday and will hear something in thirty days.

Keeping up with Cowdens!

NED!! My CT scan is NED!! My next appointment is with the vascular surgeon for a procedure on the AVM’s. I have some appointments scheduled and other yearly appointments all ready-made. Ya I posted a picture. Have no idea how or if I can do it tomorrow. Today was a good day. Soon I will have the AVM procedure be in a lot less pain so tomorrow is looking good too!

What is harder?

What is harder knowing something but not knowing what it means or waiting to find out results? My doctors send emails when and if they want to release your results. December 31 I saw the doctor for my thyroid. The first part of January I had the

blood tests he ordered. Over the weekend I got the results of the last two blood tests, vitamin D is low and PTH is high. Put that information together with over the past year my CEA levels have been slowly going up. While at the thyroid doctor he said

to asked my oncologist, from all the thyroid tests I do not have thyroid cancer. After dealing with thyroid issues since I was 17 that much I knew. I probably would not have seen him had it not been for the recent update in Cowden’s Syndrome

screenings. Because of the updated screenings I know today I have two nodules on whats left of my thyroid. So it was a good thing.

Yesterday I had a CT scan for my stage 3C colon cancer diagnoses of late 2008. The scan was better than I remembered it. The prep tasted like water and the scan itself was quick. Since my right colon surgery I have had to adjust to a new kind of

normal with bathroom issues. But I have kept the 45 lbs.  off I lost and have not tracked one Weight Watchers point. Every year late March early April I get my colonoscopies. The doctors finds lots of polyps every year. She says I am one of the

Frequent Flyers for colonoscopies. Every scope I get pictures of the polyps removed. At the beginning of every year since 2009 I start to have bathroom issues again. The colonoscopy helps.

My oncologist since 2009 moved. So tomorrow I meet the oncologist that had an  appointment in the same office to make my wait really short this time. Yes I looked him up, he has colon cancer listed,  has he even heard of Cowdens. I picked my

original oncologist because of location, knowing I would do chemotherapy. I was able to drive myself. Yes I am looking forward to tomorrow.