Some exciting news!

Hi everyone!

A few exciting things have happened the last few weeks. When I last posted, I told you about my letter that I sent to Sharp regarding my experience and how I wanted to have my negative experience turn in to a positive for someone else. Well, I polished up the letter and mailed it off. I cc:'d it to my primary doctor, my neurosurgeon and my oncologist. I was a little nervous for some reason (I don't know why, maybe because I know a bunch of physicians will be reading it)but that's o.k. - I practically sound like one now from all that I have learned (smile). I am a PATIENT and I they need to hear from us every once in awhile! :)

After I mailed it off, a few days later, I received a nice message from my oncologist on what a "Well written letter" I wrote and that he was grateful that I am trying to be an advocate (on the patient side) for Cyberknife.

Almost two weeks later, I received a phone call from the Chief Medical physician from Sharp stating that she received my letter and to call her. So, I did..........................right away!

We talked for about 30-45 minutes. She asked about what "I" wanted from this and I said I wanted to see a change. That I thought no other patient should have to go through what I did and that I would be more than happy to set/arrange a meeting w/her, the CEO, whoever with Cyberknife to educate them not only of the advancement of this type of treatment, but the accuracy, success rate, less side-effects and most importantly (unfortunately) LESS cost to the insurance co. vs. conventional radiation. She told me she would relay my info to the VP. I told she can relay this info to the VP AND that I would like a follow-up phone call from him. That was last Friday and it's now Thursday and no call. I will give it until Monday and then I will be calling Mr. VP myself. As exhausting as this can be sometimes, I have to keep moving forward for those who don't have a voice. It kills me to think that there are patients right now who are possibly not getting the most effective treatment. And unless you are Erin Brokovich (like me... ha ha - thanks Holly), most people will unfortunately just do what they are told.

So, I will wait until next week and then make that phone call. I really felt good after my oncologist called and said those nice things about my letter. That keeps me moving forward.......... :)

I got a hearing test yesterday - my right ear's hearing is still within normal range. Even though it feels plugged I am just going to have to expect that for the next year (it takes 12-18 months for symptoms to subside post radiation). I can do that, I have waited this long and am now getting used to it.

What comes next? MRI in 5 months, hopefully some progress with Sharp and then I will be over this journey! ONLY GOOD THOUGHTS!!!

Today's Daily Affirmation:

"I may not be there yet, but I'm closer than I was yesterday." ~Author Unknown

Ain't that the truth! I am getting closer - I was really surprised I got a phone call that quick so that's good - someone is listening and hopefully knows that I am NOT going away. :)

Have a great night!
Rachelle