2015

I have been busy finishing up a couple of pictures for the upcoming art show.

Animals again this year. Every year I have to learn have fun making the pictures.

The more fun a picture is to make the better it turns out.

The first picture is a bear.

My brother gave me a picture my grandpa had made of a bear and I thought this would go good with his.

I think both he and my grandma would really like that.

I finished the second one yesterday.

The second picture is our neighbors cat. While I was taking pictures of her flowers the cat came by me.

Dasher mewed wanted me to pet him. The poor cat was skin and bones.

Dasher passed away about a week later. He was a rescue.

So I did his picture to remember any pets that passed away in 2014.

It turned out really good. This weekend we plan on framing the pictures. Take in day for the art show is January 27th.

So I will post the pictures after take in day.

My next doctors appointment is my yearly CT scan because of colon cancer the middle of March.

A week after I see the oncologist to go over the results.

The skin doctor is at the end of March. So far I go twice a year and he removes something.

I have a new pulmonary hypertension doctor. He had never heard of Cowden’s, but is willing to learn.

I have an upcoming echo, blood word and six-minute walk when I see him in June.

He wants to talk about doing a right side heart cauterization again, so he has beginning numbers,

and to see if the adcirca is helping my pulmonary hypertension.  I have had two cauterizations since 2007.

Lately my fingers have been getting really cold. This starts around four pm.

Yes I know its January and  I live in Ohio so I should be cold. But My fingers get so cold they hurt.

I have started wearing gloves inside, taking them off right before bed. It seems to help.

My next art project is to make something for the twitter art exhibit.

I will post the finished project.

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Another one

 In 2002 long before  Cowden’s Syndrome I had early stage breast cancer in the left breast

The breast cancer was treated with a lumpectomy radiation and five long years of horrible medicine.

Eleven years later I get these purple lumps in my radiated breast. Theses lumps appear, continue to grow and are tender to the touch.

 Last Halloween I had a lump under the left breast. Everything came back ok.

This time I had a mammogram in early October. Everything was good.

Since I had a mammogram less than a month ago I didn’t need another one.

But the ultrasound of the lump said its the same thing I had last year.

The surgeon called the lump an atypical lesion that has to come out. So I have an outpatient procedure Dec 6th to take the lump out.

The surgeons nurse agreed with Dave cancer doesn’t grow that fast.

But the lump still has to come out.

Tomorrow

I am not sure where to start. I haven’t written in a long time.

Maybe ten days to two weeks after my doctor’s appointment with the breast specialist, I was getting dressed and thought I felt something.

Now this is after having a good mammogram and the breast ultrasound.

So I felt again and there it was. This lump looked bruised and was on the breast.

A week went by and the lump is still there. I sleep on my stomach so it takes awhile to get comfortable.

Last week I called the breast specialist. I talked to her nurse. I  showed it to the cancer doctor during my appointment last Thursday.

He looked at it did an exam and said he had never seen anything like that before.

He got me a same day appointment with my breast surgeon. Her office called, canceled my appointment and suggested I see the breast specialist.

My breast specialist is out of the country. I tried seeing another doctor in her office once, she was nice, but didn’t want to see me because of the Cowden’s.

So tomorrow I have a mammogram, and breast ultrasound before seeing the breast surgeon. Dave says pretty soon I’m going to glow.

Should have wore my lucky pink underwear!,

 Yesterday was October 10th. Its breast cancer awareness month and I saw my breast specialist.

I saw her in July she did the exam. I was scheduled for a mammogram, but she wanted me to return in October to get back to having six month screenings.

That was ok mammograms are not fun so I rescheduled.

It’s a forty-five minute drive to her office. But she knows her stuff. I met her at a hereditary colon cancer awareness day two years ago.

Seeing her I can see the doctor, have the mammogram, ultrasound if needed and leave with an answer.

The techs that work there are really good.

So the doctor comes in. She is talking about this years colon cancer awareness day. I did not attend.

One hundred families attended but no one had Cowden’s.

Right in the middle of the breast exam she finds a lump. It’s on the left breast, the breast that had cancer.

The more she feels the lump, the more it hurts. She said it’s probably nothing but circles the lump and says they will do a picture of the lump.

I will have an ultrasound today of the lump just to make sure.  After getting a circle of the lump off I go to another waiting room for the mammogram.

After looking at two magazines it’s finally my turn. The mammogram is typical, but the extra picture hurts.

Then I go next door for the ultrasound. The ultrasound turned out fine. I heard my doctor checking on me as I was walking out, one of the last to leave.

She smiled and shook my hand.

One of the office workers has a service dog. I thought she trained service dogs. Yesterday I found out the dog is her service dog.

She was in the Army. I left the office knowing traffic would be terrible, but with good news.

I have worn pink underwear for all of my doctor’s appointment for a while. Theos appointments went well. No cancer scares.

Yesterday I didn’t wear the pink underwear. I had another cancer scare.

Monday I see the thyroid doctor. Yes I am wearing my pink underwear.

PH Conference Info

IMG_0462I enjoyed attending the 2014 Pulmonary Hypertension International Conference in Indiana.

Dave and I had a good time.

It was a four-hour drive.  Yes I was really tired when we got home.

When everyone got together for meals and programs they there were two big screen televisions so everyone could see.

For someone who had only met two other ladies with PH it was really big. There were people of all ages, from all parts of the USA and I think 35 countries.

 All ages attended. We saw families with babies who had oxygen. Adults with and without oxygen.

They had a kids room with lots of activities. The PH kids went swimming and to the children’s museum.

There was lots to do lots to see and lots of walking.

Every conference there is a fashion show. The fashion show is to hide or flaunt the oxygen and iv drug ports.

I was right in the middle of going through the research room during the fashion show. Then sitting in another line for a blood draw.

Most of the sessions I attended were medically lead. I attended the basics of PH. Every time I had heard them before I was in a hospital bed.

I went to the long-term survivors group. If you were diagnosed eight years or longer you are considered long-term survivor.

Dave went to the caregivers support group.  He had not been to a caregiver support group before.

IMG_0466

There were computers set up to blog from the conference. I tried a couple of time but could not get them to work.

I got some informative and useful handouts. At one booth I got a big stack of business cards.

One side had wad Pulmonary Hypertension is. The other side was about how doctors look for horses instead of zebras.

I had read about doctors needing to look for zebras on another blog. Looking for horses means doctors need to think what is more common first.

Sounds familiar !!

Everything is connected.

Everything is connected whether we realize it or not.

Last Friday I woke up at 4:18  in terrible  stomach pain. I was having bathroom problems. When I was able to go there was lots of pain and blood.

This went on fro a while. I kept thinking if I could make till 8 a.m. That way I would get a doctor’s appointment. Save the deductible

and not wait most of the morning in the emergency room. The more I waited the better I felt. So I got an afternoon appointment.

It wasn’t with my doctor by I head an appointment right before the weekend.

This doctor was not good with first impressions. He introduces himself, shakes hands and sits by the computer.

Before asking any questions the doctor raises a leg and passes gas. Then the appointment continues.

He ended up being really going at his job. He asked the right questions. I found out parathyroids problems can cause kidney  stones.

So I either had a urnatary tract infection or passed a kidney stone. The doctor said the only way to be sure about the kidney stone

would have been to come in right in the middle of the pain. Hopefully I will not have to use that information.

This morning I had a follow-up appointment with my endo doctor. The follow-up was for a high parathyroids and a low vitamin D.

Now my parathyroids had went down but not has much has he wanted it too. I get to stop taking the vitamin D. The levels are good,

and taking too much vitamin D can cause kidney stones. There is a possibility I could have a growth on the parathyroids.

So more blood tests and a kidney ultra sound.

We don’t need growths on anything anymore in the neck. Time will tell.

Colonoscopy was good, only 20 polyps this time. Last year was 27. My CEA level is 5.5  CEA is a blood test for colon cancer markers.

Mine has been and continues to be stable. Dave and I are attending the PHA International conference at Indy in June.

So things are good.

Update

Anyone who reads this blog knows part of my Cowden’s syndrome is a very large AVM. The AVM started in my pelvis area.

It has gotten very big over the years. For a long time I was able to get the arteries worked on . My surgeon is no longer able to do anything for me.

She gave me prescriptions and referred me to pain management appointment is May 1. Who knows what they will attempt or if it will work.

Lately I have attempted to put more effort in doing things that make me feel better.

Right now I attempt to stay ahead of the pain with my current meds. I also spend as little time at the chair on the computer.

Who knows what it is about that chair but it is painful to sit in it and painful to get up. Most of the time my left leg is numb before I finish.

I also see the oncologist the beginning of May. He should go over the scan results again. It depends on when you start counting but I am really close

to the five-year mark with no recurrence.

We are hoping to get the scholarship to attend the PH Association at Indy the end of June. They pick the last applications at the end of the month.

George W Bush and I have the same style of painting. I send him an email of my prize winning dog picture and got an answer back today.

If anyone is interred Google George Bush paintings. He is currently having a one man show at his library.

I also have my colonoscopy coming up. Last week I bought the prep, hid it in the pantry and am attempting to forget.

True to form I am having symptoms again. This happens every year right before the scope.

I say a u tube video about different things to do while prepping . One suggestion was to paint your toes.

I can’t remember the last time I did that. So along with buying the jello, pop cycles and broth I plan on getting some nail polish.

Some of the over ideas sound a little to young for me. But who knows!