The road to ???

Sorry I haven't posted in awhile. Just so busy these days - where do I even find the time to do anything else w/two little ones running around! :)

I talked to the VP of Sharp. We spoke for a little while about 'my' Sharp experience (ha ha - you will get that if you live in San Diego........I am always seeing (TV) and hearing (radio) about the "Sharp experience" being the bomb). After explaining what I had to do to get the right treatment for my brain tumor, he immediately apologized and said, "We failed you" and "that never should have happened." It was hard to talk to him because I had to kind of NOT sound so P.O.'d beyond belief because then they just won't listen to you if you are.......I think I sounded pretty sincere with all I had to say and again, I reiterated that this should NOT happen to another patient with my diagnosis. He agreed that if Sharp doctors were recommending that procedure, I should not have had to go through the denials, retain an attorney, file an appeal with the state, etc... He told me that he was going to speak with those that dealt w/my situation and that things in the future should be handled differently. After awhile, he said he 'had to go' and that he appreciate my letter and input. Then the call was over.

After that, I sat there and could only think - hmmmmmmmmmm, I wonder what will happen after this. Nothing? Will he follow-up with those that dealt w/my case? He did sound sincere at times so I am hoping he does. I guess the only way to make sure he does is to follow-up with another letter to him! I will thank him for his time and ask him what he has done since our conversation. After that, I really don't think I can do anymore. I guess time will tell but I guess I can only tell myself that I tried - really tried.

I called my Oncologist and told him what was up. He said that they would certainly follow-up too w/Sharp and see what's going on. And right now is the perfect time. Sharp is in the process of putting together plans for a new cancer center in Southbay - so, they really need to get on board with this and the new technology out there. I am hoping it happens - not for me, but for others who are or will be going through what I did.

I think I will follow-up too with Cyberknife, Inc. and see if there is anything they can do.

In the meantime, I feel o.k. Still have that ringing in my ear and a few days ago, my right eye felt heavy (and still does). I don't know how many times I have run to the mirror and 'smiled, winked, etc..' to see if I am having another palsey episode. I feel something but my face looks somewhat equal on each side......I guess.

There is a referral request in right now for me to see my awesome neurosurgeon. I think it will be denied because he is no longer with Sharp. I am hoping when it comes across their desk, they will see my lovely name and fall over trying to reach for the 'approved' stamp quick enough! Ha ha....I guess I have to laugh a little now about that (smile).

If not, I will wait one more month. We just did our benefits at work and in a month, I will officially have a PPO!!!! YEA!!! Yes, it's like I bought a car but the peace of mind that comes with it is soooooooooooooo worth it. My neuro doc only takes that PPO so if, God forbide, I need surgery after my MRI in October - I don't have to ask anyone if I can see him. It's already taken care of.

Boring post...........I don't have my 'writers cap' on tonight. Tired and going to jump in bed here soon.

I hope everyone out there is doing great! Can't wait for a long, holiday weekend!!!!

Today's Daily Affirmation:

"I do not fear failure. I only fear the "slowing up" of the engine inside of me which is pounding, saying, "Keep going, someone must be on top, why not you."" - General George S. Patton

I think I am a little bugged that I feel like I am going to lose this battle. I guess I just need to be patient and listen to God - to see where this road goes. I still want to make a change for others who can't do it for themselves, but unfortunately, I have come to realize that the insurance industry is probably too much for this gal to take on. I am not saying I am giving up, but I will listen for God to direct me.

Have a GREAT 4th of July everyone!! God Bless our troops!!!!

Rachelle

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