One year ago yesterday...

Well, it was one year ago yesterday that I started my 3 days of intense radiation. It was the scariest time of my life. The unknowns, what if's, etc.... It seems like yesterday but then again it seems an eternity ago.

A lot has happened in one year. I have certainly tried to work on so many things in my life. When you go through something like that, it really makes you 'aware' of ALL the things going on in your life. I have grown as a person and continue to grow in many different ways. The reminder is still close to home, making me still wonder at times if it'll come back. But, that is one thing I am working on ......moving forward and into the future and not the past. Easier said than done at times.

I have my next MRI in April. Hoping to see the darm tumor shrink this time but if it's still the same size, I can live with that. :)

Today's Daily Affirmation:

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

Hoping that this year has started out well for all of you!!!

Happy 2011! :)

Rachelle

MRI results - finally!!

Today I met w/my neurosurgeon. I have been waiting for this day for 9 months!! To finally see if the tumor shrunk and the cells are dying and the darn thing was killed.

So, I'll tell you how it all went down.

Arrived super early (smile) at my doctor's office. It's been raining all day so I didn't want to hit an accident on the freeway and be late so I was half hour early! So, what do mom's do when they have a little time? They do things like clean out their car because things get neglected when you are a mom! :)

After cleaning my car, I went up and got there 15 min before my appt. I waited about 5 min and they sent me in. I think I was the first appt in the afternoon so I thought that I would be seen quick..........ha ha - NOT!

Well..................then the waiting began.

10 min went by, then 15, then 20, then 30, 35, then 40.....

When you are waiting for results like this, everying fricking minute seems like an hour! Doesn't it??

So, I brought a notepad w/all my questions (always do) and I started to doodle when I was waiting. I was so nervous that it then turned into nausea, anxiety, crying, anger, getting po'd at people laughing outside my door, blah, blah, blah. You have ALL been there at doctor's appt's and know what I mean.

Anyway. Here is a little of what my doodling said:

"22 min and waiting. The waiting is a killer. I keep wondering why it's taking so long? Is the Dr. reviewing my MRI and it's bad news? Is he getting a 'support' person to come to his office so that they can come in together? Is he consulting w/another Dr. on what to say because it's grown and since my tumor is so rare, he doesn't know what to think? Don't Dr's realize the waiting sucks and can literally make someone have a heart attack?

Almost 25 and counting. I guess if it was really bad, they would have made sure I didn't come in alone, right? They would have made that phone call, 'Please make sure a spouse or family member is with you,' - right? Or, the nurse wouldn't have posted my MRI right in front of me, on the computer, to stare at? Hmmmm....I have seen my tumor a hundred times on the MRI, maybe I can take a look at it and see if it's grown? (**I know what you are all thinking at this point, I am really starting to lose it??!!) Oh my gosh! It looks like it's spread! Isn't that 'white' area the tumor and it looks like it's all over? Oh my gosh! Egads! F*$&! Why would that dumb nurse put this in front of my face to look at? REALLY?!

Come on!! What is taking so f'ing long! 32 minutes. It's so quiet in this room yet any little noise outside of my room I am over-analyzing to see if it's the doctor! I think I hear him now? Oh! There are footsteps outside my door? Here we go??

Wait, wait, wait........nothing.

If nothing happens in 5 minutes, I 'll open the door and do the, "Uh, excuse me....do you know how much longer the Dr. will be? I need to let my work know??" - something dumb like that! 5 more minutes.

Maybe he is in surgery? Oh wait! I think Tuesday mornings he is in surgery right? Is that him or is my oncologist? Or my ENT? Too many doctors to keep track of! :(

I hear the nurse laughing.....would they really laugh if someone is getting bad news? No........maybe........they see stuff all the time. I was a medic - I remember.......you become insensitive to these things. F*#* again.. :(

It's pouring now outside....is that a sign that angels are crying because I am about to get bad news? The rain isn't sounding so great right now.

Where is he? 40 minutes and counting! Few more minutes and I am going to lose it, go out there like some crazy woman and then they'll kick me out and I will never get my results! Relax, he'll show up!

Stomach is cramping, I feel like I am going to puke......what's that?

I think he just came in the front door. Yes! That's him!

47 seconds later, he walks in the door."

- The End!

Yes - that is what I jotted down while I was waiting? Crazy, huh?! This stuff can make a person go insane? Plus, your mind is a powerful thing - that 41 minutes was BRUTAL!

Dr. Ghosh walked in and apologized profusely! He got into surgery late this morning (I knew 'one' of them had surgery on Tuesday mornings!) :) He was very sincere so I couldn't yell at him but I did tell him, "Well, I am a little anxious about my results." He then proceeded to tell me that the tumor was the same size. Same as last the one. Is that good? Well, it's good that it's not growing. I was hoping that it shrunk. If it had shrunk, it would mean that the cells were dying and the tumor was dying, BUT - only 30% of tumors will shrink. The rest will stay the same size and you may just have it that way forever. The problem though is because my tumor is so rare, they are going off of statistics of an acoustic neuroma (the 'neighbor' tumor to mine). They are similar. He reassured me that we are 'right on track' and that 'no growth is good news.' Yes it is.

So, another 6 months I will have another. Hoping to see it shrink or still the same size. After that (if there are no changes), I will get one yearly.

I was SOOOOOOOOOO drained after that appointment. It was raining hard and I decided to drive up the hill to a Lodge I had been to before for a massage and they had an opening. FIRST though, I had a pomegranitini - YUM! (see picture) Then I had my massage. I was so relaxed the entire time - complete opposite of the hour before. I realized I worked myself up to something ridiculous and that again, it's all in God's hands and I let my worries get the best of me and forgot all about faith.

I'll wait another 6 months and until then, I will continue to work on being positive, having faith and trusting that the good Lord will take care of me.

Today's Daily Affirmation:

"To wish to be well is a part of becoming well." - Seneca quote

This is sooooooo true! If you want to be 'well', there is so much more to it than just fitness, food, etc.. It's the mind, body and spirit and it's the hardest thing I have ever had to work on to make it all 'balanced.' It's a work in progress but each day, week, gets better and better (and no more 'freak outs' like my appointment today!).

The massage was great and just what I needed. I am so at 'peace' right now and feel blessed (once again) for all that I have.

I hope you are all safe and enjoying the rain - it sounds great right now!

Thanks for the continued prayers, thoughts, positive energy and everything!!

You rock!

NIGHT! :)

Rachelle

BIG DAY TOMORROW! MRI RESULTS!

So, I had my 9 month - post radiation - MRI today. It was long and loud (as always) except this time I got to have it in one of those 'open' MRI's (not the capsule/tube). That thing is SO much better than the other. It took about an hour - halfway through I got the dye for contrast and then I was done. I don't know why but I am always drained after I have them. Maybe from getting all hyped up about it or from all that zapping to my head.....for whatever the reason, I am glad it's over.

Tomorrow I meet w/my awesome Neurosurgeon for the results. It can't come soon enough. I have been waiting for this day for 9 months. I am anxious, nervous, scared - all the above! I am trying to have faith that no matter what the results, I will deal with it and handle it. I have so much love from friends and family I can't even describe what a difference it's made through this whole journey. Without it, I can certainly say I wouldn't have handled it the way I did.

To all of you that have been following my journey, praying for me, calling, texting, emailing, etc.....THANK YOU, THANK YOU, THANK YOU!

Today's Daily Affirmation:

"Ask for as many angels as you want to surround you." - Doreen Virtue

I need lots of them right now so I am calling all angels to surround me and for God to fill me with patience, love and faith.

Night and until tomorrow.....!! :)

XO -

Rachelle

**On another note, I chopped my hair off and donated my locks for charity this past Friday. I did it 3 1/2 years ago for "Locks of Love" and this time for "Pantene." Pantene makes wigs for women who have lost their hair due to cancer. Because I was lucky to not lost any hair during radiation, I am grateful that I could donate it for such a worthy cause. For all the women, children, babies, men who have fought much harder journeys than mine, this is such a small token of my admiration for you. Sorry the pix are backwards!! Couldn't figure out how to change them! :(

Hi everyone!

Hi there -
Sorry I haven't posted in awhile but I will be writing a few posts this weekend!
Monday is a big day. My 9 month post radiation MRI to see if CK killed the tumor.
I am ready for whatever comes..............really.

Daily Affirmation:

"Faith can move mountains, but don't be surprised if God hands you a shovel." ~Author Unknown

Ain't that the truth!

Talk soon -
Rachelle :)

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

Ear/Nose/Throat (ENT) follow/up appt today...

Today I saw my ENT doctor. We discussed the ringing in my ear and the metal taste in my mouth. He believes the ringing in my ear is from the swelling/inflammation/increased blood flow to my ear post radiation treatments. He doesn't think it will be permanent (yea) and that it will eventually go away. With CK (Cyberknife), symptoms can stick around for 1 - 1 1/2 years. So, I might have to wait awhile for this nuisance to go away but that's o.k.

As for that icky/metal taste in my mouth...I thought it was coming from my salivary glands. I think I posted a few back that my friend had radiation treatments in her neck area and she had that awful taste and her ENT doctor told her to express her salivary glands and that worked for her. Well, I have been doing that in hopes that it would help but it won't for 'my' situation. My neck wasn't radiated - my outer brain/ear area was. He told me that your 'taste' nerve runs in the branches of nerves around your ear (which include your hearing/balance nerves). Who would've thought that your 'taste' nerve would go up around your ear??!! Anyway, that's why I have that funky taste and there is nothing I can do for it. He also believes that this won't be permanent (yea again) and that it will eventually go away.

So, I am going to see my primary doctor , my neuro doc in 3 months and I finished my letter to Sharp today. It's awesome if I do say so myself! :) Remember that lady I got in contact w/from Cyberknife who was like 'gold' for my appeal? Well, she suggested some things and I cannot believe, still, that I came in contact with that special lady. Catherine - you rock!! :) I am hoping Sharp will receive their letter in a couple days and I am REALLY hoping to get a call from the executive director (whom I sent it to). We'll see what happens but if I don't hear from him in a few weeks, you should all know me by now..............."I" will be calling him (smile).

Today's Daily Affirmation:

"Here is the test to find whether your mission on earth is finished. If you're alive, it isn't." ~Richard Bach

I certainly don't think 'my' mission is finished. I still have things to do in this life. I am still trying to figure out my purpose and what God's plans are for me but I think that with time, I will figure it out. This past year screams 'advocate' to me - to be a voice for others who don't have the will to fight but I am not sure that is quite it. Time will tell and for now I must be patient.

Have a great night!! :)

Hugs -

Rachelle