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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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First week after radiation…it’s over, but it’s not over

Before I had surgery last October, my voice sounded like Minnie Mouse, and I felt as though I spoke a bit like Elmer Fudd. I had difficulty swallowing which made every meal an adventure. Seven months after surgery I felt as though I had made quite a bit of improvement. I knew that the tumor was still a big problem, but I felt better on a day-to-day basis than I had felt ...

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Day Thirty-Five

Jon, Rachel and I left Port Washington at about 10A for my 3:30P appointment. I went armed with ice paks, blanket, pillow and hot tea (for my cold). This is the day we’ve been waiting for…for seven weeks, but really for more like 18 years. This day will be especially long; not only will it be radiation Monday, but we are also traveling up to Boston and back in the same day…long ...

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Day Thirty-Four

My session is at 7:30A today. Jon cleared out the apartment yesterday. We pack up our stuff to leave the amazing Liberty Hotel, we check out around 10:30A and hit the road. It almost feels like the end…but it’s not…it’s a false sense of completion. Today would have been my last day, but I need to make up the session I missed over the July 4th holiday. So I’m out, but ...

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Day Thirty-Three

Thursday…the thirty third session…the second Photon session of the week (I still have another one to go this week…universe give me strength)…these firewall creating sessions are especially tough. I do very little today because little is all I can do. I want this week to be over. I want this to be over. I want to be home.

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