Ring the Bell

Shirt and bell from Race with Grace

Shirt and bell from Race with Grace

I came from a swimming family. So much so that one year my mom was the swim coach.

One thing she talked about but never got to do was fire the gun to start the race.

 Early Sunday morning  Sunday September 21 we rang the bell to start the race. .

 It was the tenth Race with Grace. The Race with Grace was started to honor a local woman who passed away of breast cancer.

She had three children.

The Race with Grace foundation helps families with basic living expenses while going through cancer treatment.

The foundation made a house payment in 2009 when I was going through colon  cancer treatment.

There help was really appreciated.

Dave and I met a lady whose husband had just passed of kidney cancer. The first woman mayor had just passed after her four-year fight with lung cancer.

Before the start of the race a bagpipes played Amazing Grace for everyone who had lost there fight with cancer.

My dad lost his fight with colon cancer in the 70’s. His friends started a race in his honor.

The whole thing got me a little misty.

It was an honor to be part of the tenth Race with Grace.

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First PH Support Group

Saturday I went to a brand new support group for pulmonary hypertension.

It was a first for me. I gave Dave the opportunity to do something els but he went. The meeting was held at a library about 25 minutes away.

The leader said the PH Association had sent out 200 hundred invitations. Two patients and two caregivers showed. up.

I had a good time, learned some things about PH. The support meeting are going to be every other month.

She wants to have a walkathon. G talked about practical issues we face everyday. She said if the hospital doesn’t know what PH is to leave.

I asked about nurses who have asked me if I use oxygen at home. Now I don’t have oxygen with me when I check in to their floor.

So know I don’t use oxygen at home. I use to think what an odd question, never thinking they just didn’t know.

The leader talked about the upcoming PH conference.

They have conferences every two years. This on is in Indianapolis Indiana. She had went to the last conference.

They have everything from support group meetings, fashion show,

a breakfast with a doctor all you do is sit at the table with the topic you want more information about.

She showed us her tiny medicine pump. I was amazed at how small it is. You would never know she was wearing the pump.

If you have ever had a pump let me tell you its a big deal.

We still have time to sign up and go to the conference. So hopefully I will get to go.

Google PH association and check out the conference. Maybe I’ll see you there.

I am finished!

I think the first procedure I had on my AVM was in 1983. The doctor told me it would never be completely fixed.

After a day of recovery I went to the radiation department for coils to be put in my AVM. The whole process was horrible.

I was awake and it was very painful. The first doctor was right I needed another procedure.

It seemed to me the procedures got worse not better. All of the early procedures were done through radiology and I was awake.

There was a screen so I could have watched. Someone along the way asked if I wanted to watch.  I never watched and never wanted to watch.

That was one of the few time I was glad I had glasses.

The pain continued to get worse.

I ended up waiting 13 years before having the net procedure in Ohio.

Yesterday I saw my  vascular surgeon. While waiting  we figured out I have been seeing her since 2006.

She has done at least one procedures a year on my very large AVM. This AVM started in my hip area and now effects my knee.

I get some relief but within a year the pain is back.

My breast specialist referred to the AVM has a stomach thing. I have heart failure and Pulmonary Hypertension all due to the AVM.

Lots of doctors have said just take it out everything will be better. The AVM is way to large to take out.

Two times I have had procedures and ended up back in the hospital due to complication from the procedure.

Last year I had a procedure to block some vessels in the front part of the leg. I went in the hospital a day early, had the procedure.

Within twenty fours I was back in the hospital with PH, heart failure and liver issues.

The doctor was very nice, blunt and to the point. I really appreciate doctors like that. She said I had been through a lot. Went on to describe everything used in my AVM.

Just like she said in the past it started to grow in other places. She said the AVM is way to big and she doesn’t want to kill me.

We talked about everything I had been through. She said if I had a major change she would attempt. Pain test but nothing that’s new.

I showed her my art . Starting that is new. She was very encouraging about my art.

My next step is pain management. I am not sure what pain management is.

I plan on checking into pain management next week.

2014

Mustard

Mustard (Photo credit: Mr Noded)

My list of what I hope to accomplish in 2014.

1. Have fun on vacation.

I was in the hospital twice this year. That’s  not the same thing.

Dave and I went to a couple of Cleveland Indians games.

We saw Wicked in December.

So it’s not have any fun.

2. Feel good enough to exercise again.

We live next door to our local recreation center. I do walk the dog when the weather is good. So yes I do exercise just not like I use to.

This year I will get a bathing suit and attempt to go swimming. I still have neuropathy in my feet from chemo.

3. Appreciated the time in between doctors appointments.

Right now I do not have a doctor’s appointment in January. Colonoscopy is due in May. See the Lung doctor in February, skin doctor in Feb. You know the drill.

4. Continue cooking new things.

Last week we tried Crunchy Chicken Fingers on  page 114 of the current Weight Watchers magazine. It was really cook, quick easy and leftovers taste cook too.

Looking forward to trying Mini-meat loaf Parmigiana on page 114 of Weight Watchers current magazine.

5. Make sure I have two pictures ready for the art league display at the library. I just put away my Christmas pastels.

I think I over did it on a dog picture. I have to start somewhere.

You know the drill it never ends.

6. Continue to advocate in my own way. Last March I wrote a letter to our local free paper about colonoscopies.

The paper didn’t print my letter. We had major issues with our school board as the top breaking news. The school board problems continue.

But I will send my letter again. I have wanted to do Call on Congress in March to advocate for colon rectal cancer. Last year I was in the hospital.

7. I hope this is the year I meet someone in person with Cowden’s Syndrome. It would be great to have lunch and talk face to face with someone who understands.

A couple of years a go I attended a colon rectal  hereditary cancer educational event. The speakers were informative and educational.

I met other young cancer survivors whose cancer is hereditary, but know one with Cowden’s Syndrome.

One of the give aways was a blue ball cap with green lettering, Cleveland Clinic logo colors. Dave still wears his. Mine did not fit. HA!

8. I have become the family picture taker. I look for different, not posed photos. Hopefully my pictures will continue to get better.

9. Be thankful in everything big  or small.  I am going to miss the snow on the blog. Thanks for everyone reading this.

Guess what I saw?

Angiogram Image of AVM

Angiogram Image of AVM (Photo credit: Eric Gilliland)

Last week I look up the summary of my visit to the heart doctor.

It was a check up. I had questions I wanted answered. The visit went very well.

He said I am the same, no better no worse, as far as my heart goes. My heart failure is cause from the massive AVM.

My AVM is part of Cowden’s Syndrome. I have had the AVM since birth. It started in the hip and pelvis area and was not a problem till my early twenties.

This past year my vascular surgeon gave me pictures of my AVM. Its extra-large and now goes to my right knee.

Ok , I did find out some new stuff. I was not supposed to make it a year in 2007. So the fact  I’m still here is a surprise to most doctors.

Didn’t realize that. We now have access to some of the doctors notes through  on-line my chart. I saw a list of all my medical problems.

Pulmonary hypertension is first, followed by right side heart failure. Part of the notes were about my  medical disability. First time I had seen it written.

Even though I have been on disability for a while it was still hard to see. It took some time, but I know it’s for the best.

Holiday’s

christmas tree

christmas tree (Photo credit: fsse8info)

Wicked was really good. We took parked and took public transportation downtown. All the Christmas decoration were very pretty.

There were five trumpet players right in the middle of Tower City playing carols. We found the city bus line that went really close to where the play was.

Wicked was sold out. There were lots of school busses with very well-behaved students.

Our seats were in the back, it was a great show.

christmas paint

christmas paint (Photo credit: cassie_bedfordgolf)

We walked a lot. That was fine. I still have pain in my hip, knee and pelvis area from the AVM.

I expect that and have gotten better at managing my pain meds away from home.

The hard part is being winded walking up steps and I can’t hide it any more.

I had to run so we could make the returning tram ride. Can’t tell you the last time I ran. The heart palpitations came and stayed for a long time.

I don’t know why I keep thinking that is going to go away.

Pulmonary Hypertension still surprises me. At the beginning I thought it was no big deal and would go away.

Ha I was wrong. Its been awhile since I got a lung doctor, nice lady knows her stuff. Yes the medicine helps.

But pulmonary hypertension was supposed to be no big deal. But it makes everything harder. Putting out the Christmas decorations is challenging.

We store them in the far end of the basement.  So I have to carry them across the basement and up the steps.

It might take a couple of days to get everything up. But I will make it.

Busy Week

Pink!

Pink! (Photo credit: fabrice79)

 

 

 

 

 

I had the mass in my left breast taken out this week.

 

Hospital check in was Tuesday morning at 5 am.  That meant leaving the house around 4 am. My sister made the trip up again. Thanks Beth.

 

Getting there early did mean I was first and no waiting in their holding are after saying good-by to my family. This was the first time I came home after being put all the way out.

 

My first nurse put in the IV. It had to be the easiest IV I have had. She numbed the area and used a small needle since I was going home.

 

I came home wrapped an ace bandage. Yesterday I took off the bandage and had a quick shower. My follow-up appointment is with the PA on November 7.

 

 

 

 

 Just got home from the parathyroid doctor.   He talked and did a thyroid ultra sound. My nodules have grown slightly. He ordered more blood tests. I have to take

 

Vitamin D3 100,000 units for 3 weeks then cut the dosage in half.  Dr said if my vitamin D level is up I should feel better.

 

 

 

 

I am looking forward to attending a pastel workshop this Saturday.