What !!!!

The skin doctor is finishing up my appointment. He’s telling me the problem area looks great. I agree with him. Last thing I have one more spot I need checked. Silly me not a big deal, he’ll look and I get another appointment in six months.

What I think I heard him wrong. Your not sure what this is. Out comes the doctor tool, he gives a measurement to the assistant. You need a biopsy this needs to come off. Any vacation plans coming up? Do you swim? Well yes my reunion is this weekend. Ok lets schedule the biopsy after the reunion.

Dr shakes my hand and leaves. I get dressed and then think of the questions? Dr is in the hall. Yes you will have stitches for ten days and need to stay off the area. Right again after the numbing meds wear off the area will hurt. We start with scheduling my return appointment. The nurse tells me everyone who has not had skin cancer gets yearly appointments. He’s new. I ask about Cowdens Syndrome. He looks surprised and I get a six month return appointment for a skin check.

After all my questions are answered I get a biopsy for early August. The biopsy is on my bum. It looks to be a long ten days.

 

Why not just get rid of it?

Its been suggested that because of my high rick for cancer just get rid of it. Your know have surgery, take it out. Everything will be better without the risk right.

No, I have Pulmonary Hypertension. Pulmonary Hypertension is high blood pressure of the lungs. Take a look at http://www.SometimesItsPH.org

The site give a good definition of PH. I have many of the symptoms. Anyone can be diagnosed of PH. About half the people I met at the last convention are on oxygen. I have many PH symptoms but so far am not on oxygen.

I had complications with being put to sleep for surgery because of PH. My doctors have said its better for me to avoid surgery when possible. So I am not a candidate for any cancer prevention surgery.

I was diagnosed with pulmonary hypertension the same time I was diagnosed with right side heart failure. But thats another post.

A couple of sites

SometimesItsPH.org

PHAssociation

AmericanHeartAssociation

Check out heart failure on the American Heart Association site.

So What do We do Now?

For a while I have been attempting to shorten my list of doctors.My

doctors are educated nice people, but over a years time I see way to many

doctors. Part of this comes from three emergency visits and two hospital admits last year.

October of 2015 I saw the breast specialist had my mammogram, she

found something so I had the ultra sound. Ended up getting cream for the

nipple and a follow up in three weeks. Then ended up with a nipple biopsy.

Everything turned out ok, but its getting old. The breast specialist handed

me a paper to get an evaluation with a gyn oncologist. My appointment with him was yesterday.

Yesterday’s appointment turned out better than I thought.

The physicians assistant asked lots of questions. She said yes I was in the right place.

When the doctor came in he talked, about Cowdens and my risk to get a third cancer diagnosis.

He talked about options and how I can prevent a third cancer diagnosis. Then he asked for my questions.

 Dave was out in the waiting room so I asked if he could come in and have the doctor repeat Everything.

So in Dave comes and I get another chance to listen.

I could have my uterus removed and  be done with everything unless they found cancer.

I could have yearly screenings, or we could do nothing.

In my case I have been told many times no more surgery. So that one is out.

IMG_0115We ended up scheduling a biopsy in February.

Ok so what if someday they find cancer. I have a 28% risk. The doctors talked about options other than surgery.

First time I went to the Gyn doctor and got to keep my clothes on.

I left knowing its up to me.

Cold and Frustrated

 

quilt at conference

quilt at conference

I am cold and frustrated. Winter has finally hit Ohio and if it were up to me it could have stayed away.  We do not have a fenced in yard, so whenever the dog has to go out someone has to take her.It was 27 this afternoon when I took Bailey out. Bailey is our dog we got this past April at the age of 15. She is a border collie mix, sweet dog. Bailey is a really slow walker, has to sniff at everything. This past May Bailey turned 16. I didn’t want a puppy, wanted a dog who needed us. But on a good day it takes at least 30 minutes outside for Bailey to finish everything.

I have been inside over an hour and my hands are starting to hurt again. My fingers are still cold. I am typing wearing gloves.I found an old Christmas present of gloves with the fingers cut out to text with a mitten top for over the holes. They work really well. Hope they still make them.  One symptom of pulmonary hypertension is cold hands. Mine get worse in the winter.

Tomorrow I see a new doctor. Can not remember the last time I saw a gyn. My breast specialist referred me. I looked him up, among other things this doc speciality is hereditary cancer. A new doctor to explain my overgrown pelvic AVM too. I have been told some odd things about the pelvic AVM over the years. Lose weight and it will go away. The AVM causes no pain just looks different. Wrong!!!  Hope he is kind.

Hello

Hello,  anyone who just found this. I have Cowden’s Syndrome. In simple terms that is a muted gene that makes my chances high of developing cancer. I have had breast and colon cancer. I was born with an AVM. I have had many procedures to slow down the growth of the AMV. My AVM is the reason I have right side heart failure and pulmonary hypertension.

 Lots of things have been happing since I last wrote. I have been making doing more art. Someone bought a picture, a first for me. I make an effort not to let my illness keep me from living life. But after two broken ankles I have learned to go at my own pace.

Last week Dave said it is time for me to get a handicapped sticker. I know they are not hard to get. Kinda thought it would be nice to get one especially for doctors appointments downtown Cleveland. But I thought I was doing pretty good at hiding how much I was struggling, especially on stairs. For a long time I have been skipping the stairs. Why heart palpitations and hard to get my breath. Sometimes I have to stop three times on a long flight of unavoidable stairs. One time someone was behind me carrying a bike. So Friday I got a handicapped sticker good for five years. I know the new problem will start when I attempt to use it because I don’t look sick. Thats for another day.

 

 

Birthday week

Its been a long week. I had horrible back pain. The kind that is a 15 on a scale of one to ten.

The pain didn’t go way and got worse. So Dave and I spent Sunday in the emergency room.

I had blood drawn, another ct without contrast and a VQ scan. My last ct with contrast was this past March 13.

The ct was fine stated my colon cancer had not returned. The word report needs redone. My AVM has gotten so big it was called something I was not born with.

But that’s another story.

I ended up spending Sunday in the hospital and was discharged early Monday evening.

The discharging doctor stressed I see the spinal surgeon for pain management and my pain is in a different place than the old break from the ct scan.

As far as I know I only broke my back is a car accident when I was 16. Currently I am over 50.

This doctor said he had everything set up for my appointment this week.

Well I got an appointment for tomorrow right down the street from where I live.

But they need a copy of the ct from the 13th. Yesterday I called attempting to get my ct on a disk for the appointment tomorrow.

I was told I had to go downtown Cleveland to pick it up if it was ready and there was a charge.

This morning Dave had blood drawn and we talked to a really nice lady in the records room. She could have made my copy in 45 minutes.

We will be back tomorrow to pick it up.

Now I remember another PTEN contact blogging she gets what she needs to get done for copies of scans before leaving.

I will know better next time.

Baby its cold outside

Baby it’s still cold outside. We are having the coldest February on record.

Last week school was closed because the wind chill was expected to be minus 20 below.

It didn’t make minus 20 below but it was still cold.

My end of the couch is close to the window. Its cold enough to make it harder to breathe watching television.

I have a pair of mittens on my end table. This week I have had to put them on sooner because of the cold.

Pulmonary hypertension make my hands so cold at times they hurt.

I have been lucky, my next doctors appointment is not till March. I have a yearly CT scan.

Last year I had a reaction to the dye so this time I have to be premeditated and have a driver.

February being Go Red for Women month I will mention I continue to have heart palpitations. They come at strange times.

 Last for longer than I would like and it doesn’t matter what I am doing.

The doctor says he can put me on meds for them but the meds would make me more tired. So I live with them and the cold.

Dave brought home roses for Valentine’s Day. That was nice and very unexpected. He asked what I wanted.

I wanted pastels in the colors of nature. So he ordered me soft pastels. Staying inside has not been bad,