2017

2017 started with doctors appointments. I had my six month appointment with the dermatologist. He is one of my favorites doctors. The staff is very nice. Doctor knows what he is doing. They are always on time. He has become the family skin doctor.

Two Monday’s ago I saw him.  Everything was ok till he got to my right cheek. He thought it possible could be a pre cancer or possible basal cell cancer. I needed a biopsy. I’m no stranger to biopsies. The doctor is good at them. If I have basal cell cancer this would be my third cancer.

So he finishes. The answer to all my questions is “We’ll be in touch” I wait till the following Monday,  call the office back. Tuesday morning a nurse calls. Doctor talked to the pathologist. Report is he’s not sure. Doctor wants to see. Saw doctor Friday afternoon. He did another biopsy on the same site says results should be back by Wednesday at the latest. Thinks he got everything this time.  Depending on the results I might need to see another doctor for further treatment.

I know with PTEN skin cancer  I am at a higher risk for skin cancer. Every year I buy sun block but forget to use it. With my large head size I have one ball cap that fits.

Treatment for pimples in my teens included time under a sun lamp and night cream that smelled like sulfur.

This summer I will use sun block not just buy it. Hopefully there is somewhere out there that has cute wide brim hats for summer.

Most important my hope is my family, friends will make a point to use sunscreen with me.

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.

Thats Me

Dave says I am more tech minded than he is. This is not one of them.

After getting out of the hospital last year I got a lung doctor for my PH. Her medical student came in and asked lots of questions.

He left and was gone for a long time. To long when your tired and want to go home. So I left Dave in the room,

Found the medical student and what ended up being my doctor by the computer attempting to find someone else with Cowden’s Syndrome and PH.

They could not find anyone.

The doctor came in, asked lots of questions. She did tests and put me on brand new PH medicine.

When everything was over she said she was going to do a paper on me. The last three times I saw her I asked about the paper.

Her answer was it takes a long time to be published. This fall she moved to another part of the hospital. My new doctor said the same thing research takes time.

For whatever the reason I couldn’t get the cut and paste to work. So if your interested Google PTEN and pulmonary arterial hypertension.

Thats how I found it.

Abstract
The pathogenesis of pulmonary arterial hypertension (PAH) exhibits many neoplastic-like features. Cowden syndrome is a difficult-to-recognize heritable cancer syndrome caused by a germline mutation in the phosphatase-and-tensin homolog deleted on the chromosome 10 (PTEN) gene. PTEN regulation has been implicated in cancer development and, more recently, PAH pathogenesis. Here we report a case of PAH in a patient with Cowden syndrome and the response to pulmonary vasodilators.

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.

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.

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.