My Way Out

paula_w · 05-21-2012, 07:44 PM

MY WAY OUT

After at least 25 years with Parkinson disease, one expects to slowly become less functional in every way.

Communication becomes slurred, muscles freeze, swallowing becomes difficult and- last but not least -there is a constant danger of falling. All of these symptoms can lead to other health conditions that are also life threatening.

Our insides are sluggish and backed up also. Inside tremors are not always visible to the eye but they reveal themselves on machines. The internal tremor alarms doctors who are not familiar with pd and they learn from the experience. I have demonstrated this learning experience to at least three doctors and a paramedic team. My gastroenterologist sent for my husband before putting me under with anesthesia because of monitor irregularities due to internal activity.

Pwp have a high tolerance for discomfort.

How will our lives conclude with this illness? So many possibilities, but mine was revealed to me with an esophageal cancer diagnosis after what seems like a lifetime of painful food backup, bloating, and heartburn. I don’t know or care if it was the pd that caused it. I used to smoke and drink, but I suspect the sludge that ferments and creeps through my digestive system wore out my esophagus.

When I woke up from the endoscopy my doctor said, “you have a tumor,” I asked ‘is it cancer?” He said ‘I think it is; you will need chemo and radiation.”I looked at my friend and said “I finally got a way out.”

It doesn’t stop there. Lymph nodes are next and now it’s just cancer as it is beyond the esophagus. Little sprinkles of it scattered on the PET SCAN – some here and some there.
"If you have symptoms,” explained a very well respected oncologist, “you are already past stage 1 where there is a 90% survival rate. This is almost always found accidentally. This quickly drops to 30 per cent if it’s in the muscles and down to 10 if it’s in the lymph nodes, and of course I have a spot on my lung. Not identified yet but it is likely going to contribute to what is indeed a way out - like it or not.

That brings me to the reason for writing to you all. I’m going to list the rest for brevity and clarity.

I am not afraid. Whether you realize it or not, Parkinson prepares you for death, especially as the years go by and you suffer losses all along the way that you can’t get back - like carrying my new grandson while standing up-no balance.

I am not depressed, I’m relieved. I basically haven’t felt well since I was 35.

I have become pretty cynical about the medical community and seem to see more waste, competition, repetition and dishonesty than success and compassion.

I am not going to fight it. It will only destroy all the gains I’ve made from exercising. The oncologist said I have no cogwheeling and he’s never seen someone as “normal” as me after 23 yrs. After reading an article called “Doctors Die Differently” I learned that doctors don’t take as much treatment as they prescribe. I decided to do what the writer suggested in the article and ask what each of my doctors would do?

The general practitioner hugged me and took my shoulders and said “YOU MUST FIGHT THIS.” The gastroenterologist said take the chemo and radiation, it may buy you some time. He's a sweetie but his job is to keep me alive.

The oncologist said, “I probably wouldn’t take the treatment. I think we have the same view about death. It will make your pd much worse and it’s too far advanced.” God bless him . He said he might suggest a little radiation to shrink the tumor to enable me to swallow. Therefore that’s our goal. Attempt to shrink the esophageal tumor so I can eat and travel.

Today, under pressure the doctor said most doctors would say I have 6 months. Maybe,more, maybe less.

Here are two statements made by my oncologist that I have never heard before from a doctor:

“Hey where are you going? We aren’t finished yet!”
and
When asked if I should go into a rehab center for treatment, he said,
“Good Heavens No! You’ll never get your meds on time there!!”

My faith guides me everyday – one at a time. “Fear no evil for thou art with me.” I believe I am in the right hands.

made it up · 05-21-2012, 09:00 PM

Paula,
Just want to let you know you're one of my favourite posters in this group and that you're in my thoughts.
Lee

lurkingforacure · 05-21-2012, 10:02 PM

Paula, I understand your post but am still so very sorry to hear this. You have touched more lives than you can know and are a shining spirit in so many ways.

And I thought PWP never got cancer. As if the PD weren't enough. Hugs to you, lfac

RLSmi · 05-21-2012, 10:06 PM

Just want to ditto what Lee said about your postings, Paula. You have my best thoughts and prayers.
Robert

Muireann · 05-22-2012, 04:33 AM

Paula,

Really, really sorry about your misfortunes. Wishing you strength, peace and love in the challenging times ahead.

Hugs,

Muireann

Bob Dawson · 05-22-2012, 06:23 AM

For those of you who are new here, know this:

Paula W is one of the pioneers of Parkinson's patients' activism. With fierce energy, faith, love, hope and truth, she rattled many cages and inspired many souls. Just reading her posts often pulled me out of "Off" and sent me vigorously back to "On".

reverett123 · 05-22-2012, 07:02 AM

Hearts and prayers go with you Paula.

Chemar · 05-22-2012, 07:23 AM

(((Paula)))

My prayers are lifted for you.

moondaughter · 05-22-2012, 08:37 AM

Dear Paula,

PD may indeed "prepare" us for death.....but does it really ?

remember barbara streisands' song "People"....? who need people...are the luckiest people in the world...you bring such grace to this community and i see how you choose life in so many ways ( exercise and humor for starters) - don't stop now girlfriend - keep going.
sharilyn

imark3000 · 05-22-2012, 09:58 AM

I have you in my thoughts and prayers.
You are a great lady and great fighter and you have always inspired us along our journies with PD. You have not reached the end of the road. Only God and not the doctors would know or decide that. I know you will fight cancer as well as you fought PD.
With love.
Imad

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