Time Flies

This August 30th was the 20th Anniversary of the first time I had brain surgery. In 1990 I was the mother of a one-year old baby girl. Jon and I moved four times the year before that, because our apartment had been destroyed by the Con Ed Department Steam Pipe Explosion-a true New York City story. We had decided a lucky 15 minutes beforehand to take a walk with our then 4 month old ...
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Before You Can Walk, You Have to Ride…Or It’s Off to Musa’s Slaughterhouse We Go

It’s still my intention to walk the 227 plus miles from my house to Mass General Hospital this June; that is of course once I create my Non Profit Organization (which I find out takes time…lots of time), fill out paperwork to attract and attach various sponsors, contact sponsors and wait for them to call me back (which I find out, takes time…lots of time), train to walk long distances in all kinds of weather, ...

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The Road Back

August 11th was one year from the last day I had radiation. Last year was the year I was sick, this year has been the year of recovery, and this next year is the year I’m moving forward. I can feel it.

Last year at this time I could hardly walk the two blocks to the hospital for treatment, today I can walk two miles, next year (June of 2010), I’m planning to walk ...

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Some Words About Walking

From Here to There and Back, to There and Back, to Hell and Back, Back and Forth, to Here and Back Again, It’s a Rough Road, Long and Winding Road, Road to Nowhere, Let’s Get on the Road, Hit the Road, Road Warrior, Walk until you Drop, He Who Limps Is Still Walking, Walk This Way, Walking On Sunshine, No Walk in the Park, These Boots were Made For Walking, Walk On, Take a Walk ...

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What a difference a year makes

My hope was that I would be able to start writing this blog again from the anniversary of the first day of radiation last year (that would have been June 23rd) through to the last day of radiation (August 11th), to see what a difference a year makes. Well, much of like what I’ve planned this year, that didn’t work out. This is the year of making plans and not having them happen, ...

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How To Be a Smarter Patient-Part Two

Lesson 11
Over my 19 years as a patient, I have had a doctor strangely come to my bedside and cry, I had another only return my calls at 11:30 at night, another told me we would be seeing each for the rest of my life, only to then have a follow up conversation with him several days later where he told me that he wished me luck, but that I should be seeing another doctor ...
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This is a Success Story! How to Achieve Patient Power-Lessons 1-10, Lessons 11-22 to follow

To those looking from the outside in, my story may seem to be a survival story…and it is, but it’s much more. My story is also a success story. A survivor is someone who continues to live or exist despite an ordeal or circumstances. A success story is having a positive outcome. We mostly hear about success stories as monetary achievements, but that’s really selling the word short.

My story started 19 ...

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No news is good news

Last Thursday, almost seven months to the day that I had completed my last radiation treatment, Jon and I headed to Boston for my six-month (more like seven-month) follow up. What we were hoping to hear was that there had been no tumor growth in that time.
The months in between radiation and now have been riddled, as I have explained in earlier blogs…with nervousness and anxiety…every symptom I’ve had over these months always ...
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Expectations aren’t always what you would expect

“Our expectations were too high”. “It was better than we expected.” “It’s not everything I expected it to be”. “It went beyond my expectations”. Then there is Expectation’s brother “counting on”. “I counted on you being there”. “Don’t count on me”, or the opposite “count me in”.

During this summer when I was driving back and forth to Boston for radiation, I had much time to discuss things, much ...

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A month after radiation…I wait

In the poem “If” by Rudyard Kipling, there is this line…”If you wait and not be tired by waiting… yours is the Earth and everything that’s in it”.

And so I wait.

It’s been a month since my last radiation treatment. I feel better than I felt a month ago, but I have a ways to go until I feel the level of zippy to which I am accustomed…before all this started. In the last few weeks ...

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