On December 21, 2008, I was diagnosed with a rare brain tumor

One year ago yesterday...

2011-01-21T21:29:00.001-08:00

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!!

2010-10-19T19:22:00.000-07:00

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!

2010-10-18T20:57:00.000-07:00

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!

2010-10-14T17:41:00.000-07:00

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 ???

2010-06-30T21:45:00.000-07:00

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!

2010-06-03T17:16:00.000-07:00

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...

2010-05-11T22:05:00.000-07:00

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

3 Months post radiation MRI results in!

2010-05-10T15:30:00.000-07:00

Hi everyone -

I FEEL horrible that I haven't blogged in awhile. I actually got my MRI results about a week ago but have been so busy with trying to pursue Sharp and getting this covered for others AND I didn't know what to think after my appointment with my oncologist.

I met w/Dr. Smith (my oncology/radiologist doc) last week and he told me that the tumor is still the same size as it was prior to treatment. They were actually expecting to see it a 'little bigger' because radiation will initially cause the tumor to swell and then necrosis (tissue death) will take place and the tumor will begin to shrink. This happens over a period of 6-9 months so my NEXT MRI (in 6 months) will then confirm if the radiation worked and we killed the tumor.

He said all looked as it should. I know this is TOTALLY dumb but all I could think was, 'Why isn't it bigger? Did they not 'zap' the right area?' I kept anticipating it being a little bigger but it wasn't - AND now I know that THAT's OK! (smile). The Cyberknife office I went to has so many quality assurance measures in place it's ridiculous. So, I KNOW they did the right spot/area but I guess I won't really feel like things are 'o.k.' until I get that confirmation that the darn thing is dead.

So, I went into a little hole of self-doubt for just a short time and then got out! (sound like me from past posts??!!) :) All is well in my world today - really.........!!

Now come all the follow-up appointments. I see my ENT (Ear/Nose/Throat) doctor today. Going to see what is up with the darn ringing in my ear. My oncology doc said it's probably 'increased blood flow' to the area - post treatment. I am hoping that's it. But, if ringing is what I have for the rest of my life then I'll deal w/it! He did tell me that 6-12 months post radiation starts a 'whole new set of symptoms'..............egads. So, just good thoughts and praying that everything stays as is. I actually could still get a palsey episode (facial paralysis) and my face does do some weird, funky twitching at times but now it's just entertainment for me (smile).

God is good, life is good, hug those closest to you because you never know what tomorrow brings and smile more often - it's contagious!!! :)

Today's Daily Affirmation:

"We all possess the thunder of pure fury and the calm breeze of tranquility. If it wasn't for tomorrow, how much would we get done today? Whatever your purpose... embrace it completely. Get lost in the clouds every now and then so you never lose sight of God's wonder." ~Paul Vitale

Mother's Day was this past weekend and I couldn't be more grateful to my little babies who helped me get through last year. One day when you read this babies, I hope you know that I will forever be indebted to you for your unconditional love, smiles, hugs and kisses!!! It made everything difficult much easier to endure.

Have a great week everyone and I'll update a little more the next few weeks post appointments! :)

Rachelle

MRI in a few weeks!

2010-04-21T21:16:00.000-07:00

Mean people suck....not going into details but I really feel sorry for people who have nothing better to do with their time or their mind!

Now - on to more important things! :) My MRI is scheduled to come up in the next few weeks. Am I nervous - yes. I know they said the tumor would be bigger but I am worried about 'how much' bigger. I took Monday off of work because the ringing in my ear seems to be getting worse? I have no idea what's going on. Maybe it's the tumor swelling which is causing more pressure and more ringing? Who knows. I can spend hours and hours 'wondering' and hopefully very little time thinking the worse but in the next few weeks I will deal with it then, right??

Made an appointment with my ENT doctor. I have a few questions for him regarding the ringing, my hearing (ear feels more plugged - could be from the swelling) and how to express my salivary glands. A friend of mine had that awful metal taste in her mouth after radiation and she said her ENT told her how to express her glands to get that crap out. I tried it a few times but don't know if I am doing it right. I, of course, couldn't get in to an appt soon (approval, then it takes weeks) but I am hoping to get in sooner with a cancellation. Remember the posts back of "Hi there..it's Rachelle from San Diego - remember me?" ..........well, here we go again! (smile)

Tomorrow Chris and I are meeting my fabulous attorney (who helped me with my appeal) to thank him and give him a small token of our appreciation (although, if I was rich, I would certainly pay him EVERY penny he earned and more). I know attorneys get a bad rap in California but there are a handful of really descent ones who have good hearts and thank God I was lead to an amazing human being! I will forever be grateful to you Greg!

On another note - remember when I won my appeal and I said that my next mission (after treatment) would be to have my insurance co. change their policy? Well, I haven't forgotten about that. I am going to contact Sharp and make an appt. with their adminstrators (particularly the one who denied me over and over) and then possibly have my 'patient liason' contact person with Cyberknife meet too. I can't wait.

Did I tell you I called that adminstrator (the one who denied me) and said, "This is (my name)...remember me?" And she said, "Oh yes" and was SO NICE to me on the phone? Go figure! Anyway, I had to ask her a question and she was probably glad to get off the phone with me but I'll be calling her again soon. SURPRISE! :)

Just when things seem to kind of 'settle', the roller coaster is now starting to slowly ascend another mountain. That's o.k. - I have handled worse and the worst is over.................right?

Today's Daily Affirmation:

When you have come to the edge of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly - Patrick Overton

How did I miss this quote? It's amazing!!

Have a great Thursday everyone! Start your morning with, "something good is going to happen to me today" and guess what, something good WILL happen!!

Night -

Rachelle

Sick, again???!!!

2010-04-05T19:55:00.000-07:00

I think I am coming down w/something...again! :(

I have had about 5 colds since treatment. I don't feel strong and it seems like I just catch anything and everything. Today I started having that 'scratchy' feeling in my throat and tonight it feels worse. I am doing o.k and go about my 'daily' stuff but I don't FEEL strong or healthy. My ear is still ringing (they were hoping this would go away at 2 months and I am going on month 3), I get weird sensations on the right side of my face, I have that AWFUL metal taste in my mouth and I still get bouts of nausea. I had some bloodwork done last week and my iron is low. I guess that can explain me feeling like I am just 'dragging' lately but I am sure I still need to give it time. It hasn't been that long AND my tumor is supposed to swell post radiation so I am sure I am going to feel symptoms from that. This morning I woke up and couldn't hear out of my right ear......it took about 10 minutes trying to pop my right ear and it finally cleared. Freaked me out for those 10 minutes but then it was o.k.

So, should I complain more? Smile. Really, I can't complain.....all these things are just more of a pain than anything. Can I live with it? Of course. Will they go away? Hopefully. And if they don't, I'll get over it. Things could be worse.

Life is crazy busy. Trying to balance work & family is hard. I don't know how people do it with more than two kids! Egads!

Chris and I just had our b-days and he got me tickets to the Black Eyed Peas. My FAVORITE song ("I gotta feeling") was the last song they sang. It was a great concert but of course, I was exhausted and all that noise made the ringing in my ear 100 times worse. It finally calmed down after a few days - it was worth it. :) Thanks hubby for the tickets!

Not much else to write....kind of a boring entry but I just wanted to let you all know I am still here and just waiting for my MRI in about 3 weeks! This last weekend was nice.....I love Easter and on Sunday, me and the babies went to church (Chris had to work). It was a really nice service. Made me really think about my relationship with God and that I have a lot more work to do in 'that area.' Music was nice and about 30 people accepted Christ into their life. It was pretty cool.

Today's Daily Affirmation:

"The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination."- Don Williams Jr.

So true. It's the journey that shapes us and makes us who we are.

Hope everyone had a great Easter weekend! :)

Night!

Posting with a heavy heart....

2010-03-09T20:44:00.000-08:00

A few posts back, I wrote about Layla Grace. A little baby girl, fighting cancer and things not looking good for her. Well, 'Layla went to play with angels this morning' - as her mom stated on Twitter. As I said before, I never cried so hard for someone I didn't know. I am so sad for her, her family and yet humbled for all she did in her short life.

I can't imagine losing your child so young, in such a painful way as the Marsh family did. I am grateful to them for sharing their journey which in turn, touched SO many lives. When I first started following on Twitter, there were 20,000 plus followers. Today, it's 45,000+ followers (within two weeks it has more than doubled). She was an amazing warrior and fighter. She made non-believers...believers. She made parents hug their kids a little bit tighter and remind them of the things we take for granted - everyday. For some reason, again, she touched my life in ways I can't even explain.

I will forever be grateful to you baby girl and will remember you forever. I pray that your family has peace knowing that you are in no more pain and that you are seated at the right hand of God, with a tumor & cancer free body.

Today's Daily Affirmation:

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." - 2 Corninthians 4:7-12, 16-18

Sweet dreams baby girl.

The unknown...

2010-03-06T19:33:00.001-08:00

Hi everyone -

It's been awhile! I probably won't write as often but I will try and give you updates every now and then.

So, what has been going on? First, a lot of people have been asking how I am doing. Pretty good - I think?! I went back to work a few weeks back but now I am wondering if I should have taken a little more time off. I think when you go through something like radiation to your 'head', when you have the slightest bit of 'feeling better' you want to just jump into work, working out or whatever to just feel 'normal' again. I went back to work and it's been o.k. but I think I should have taken a little more time off. I have been having these really, really bad bouts of nausea - to the point where I feel like I am going to puke (but don't). For those of you who know me well, I have a pretty rock/hard stomach! Nothing gets me sick and I never get the 'stomach flu.' I called my oncology doctor and he said that it shouldn't be from the radiation. Hmmmmmmm......and this whole time (post radiation), I was thinking that it was. So, I think I am going to go see my primary doc and have her run some blood labs. Something isn't right. Trying not to worry about it - could be a lot of things.

Each week seems to get better (although I got the WORST cold the last few weeks) - I just seem to catch everything right now which is expected because of my compromised immune system.

My last post was on a little girl named Layla Grace. If you checked her link/blog, you can see how I really just can't complain. That little girls journey makes mine seem SO small. I don't even know that little girl but I have prayed hard, cried and she sure gave me perspective on the things we take for granted every day. I do think 'my journey' really did change me as a person, but she has reminded me that there is still SO MUCH to learn and to do for myself. Remember some posts back I wrote on how if you think your life sucks, there is always something worse? Just read her story..............amazing.

So, I am plugging away. Trying to keep my head above water with work f/t, crazy life at home with the two babies, recovering from radiation, etc........but all in all, I really can't complain!

The end of next month I will have my first f/u MRI. They said they should expect to see the tumor bigger from the swelling caused by radiation but let's just hope it's not alarmingly bigger! (is alarmingly a word?)

Today's Daily Affirmation:

"I shut my eyes in order to see." - Paul Gaugin

Maybe I just need to rest, close my eyes and listen to my body. One step at a time, one day at a time. Slow down, things will be just fine.

Night :)

Rachelle

RIP Chelsea King - praying that the good Lord gives her family some peace. If you are on Facebook, go to "Chelsea's Light" and become a fan. You can follow her parents journey there. So, so sad.

Layla Grace

2010-02-21T21:07:00.000-08:00

My post today is dedicated to Layla Grace...a two year old fighting neuroblastoma (a rare type of cancer typically diagnosed in children). A friend of mine posted her site on Facebook and I checked it out and just balled - I mean, I balled hard for like an hour. Her mother is blogging her journey and her last post just really hit home (Feb. 16th post).
Check out her site by going to http://laylagrace.org and read about this little warriors amazing strength. I COULD NOT imagine what this family has had to endure. It sounds like hospice is now involved and it's all about comfort care for this sweet little girl who will possibly lose this battle. My thoughts and heartfelt prayers are with them right now and everyday.

Today's Daily Affirmation:

"Don’t you be afraid, for I am with you. Don’t be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness." -Isaiah 41:10

God bless your sweet little soul Layla.

Night -
Rachelle

Doing much better!!!

2010-02-15T20:12:00.000-08:00

Hi everyone -
I know I was going to write after my two week follow-up but I kind of got bummed after my appointment because I thought I would know that Cyberknife worked after my three month MRI f/u but now it appears that it won't be until 9 MONTHS down the road! :(

At the 3 month MRI post-treatment, the doctor said that he wouldn't be surprised if the tumor was larger (from the swelling from radiation). 6 months AFTER that MRI, then they should 'hopefully' see that the tumor actually shrunk. It seems like such a long time to wait for 'confirmation' of the darn thing being dead but since I have no control over it, I guess I shouldn't dwell on it!!!

Feeling so much better. That extra week I took off of work was much needed. Although I started to feel better, I went for a short walk one day and then felt like someone had beat me that afternoon! I guess I am really 'not' up to par yet but that's o.k...one day at a time.

Tomorrow I return back to work. Looking forward to some 'normalcy' again. It's amazing how when you stay home (when you are used to working) how you quickly get used to being in PJ's all day! I certainly wasn't motivated the first few weeks to do anything but now I am ready to get back into things. I have a huge, high profile case going to trial in about a month so it's time to get back and get ready for that! It will be nice to see some of my friends at work tomorrow. :)

Today's Daily Affirmation:

"I am a being of light. Angels are all around me, helping and guiding me at all times. I am safe and I am loved. Everything in my life happens at just the right time, in just the right place and in the best way for my highest good. And so it is." - random daily affirmation

Have a great week everyone!

Hugs -
Rachelle

Back again! :)

2010-02-04T21:37:00.000-08:00

Hi everyone!
Sorry I haven't written in awhile but I have been tired (obvious) and I just kind of got in a 'funk.' Didn't really feel like writing and I was just feeling like I was in a 'fog' for the last few weeks.

I would say that today is the first day my head really felt somewhat 'clear.' Still having some random side effects and some fatigue (like the other morning I woke and felt so nauseas like I was going to puke! Almost like I felt when I got pregnant and then after about 20 min. it went away). It's mostly annoying but I just tell myself that ALL of this is 'temporary' - right? Could be worse! I am worried about the ringing in my ear - really hard to go to sleep at night when it's quiet and the ringing is more prominent. Tomorrow is my 2 week f/u post treatments so I am going to be picking the doctors brain with my questions!!! :)

All in all - I am hoping next week I will be on the 'upswing' and feeling back to 'normal.' I am looking forward to getting some normalcy back to my life. I saw Dr. Won yesterday - ALWAYS good to see my Korean doctor! He is awesome and so inspiring. He said he feels my body tolerated the treatments "very well." Smile.

Today's Daily Affirmation:
"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face." ~ Eleanor Roosevelt

Remember me talking about the 'light at the end of my tunnel getting bigger and bigger?' Well, it certainly has! I will finally feel like I can walk through it when I get that MRI in 2-3 months. Nothing but good, positive thoughts and keeping my faith strong to get there. All is well, life is good.

Good night! :)
Rachelle

Doing o.k.. :)

2010-01-27T09:11:00.000-08:00

Hi everyone -
I am doing o.k....just tired, occasional headache, my balance is off at times, ringing/buzzing in right ear and my mouth tastes like metal. My oncology/rad doctor called yesterday to check up on me and said that the 'real' fatigue usually sets in about 7-10 days post treatment - so 'don't be surprised if you are really tired'. So, that's coming up...
Hopefully it's not TOO bad! Thanks to everyone again for emails, cards, flowers, texts, messages, prayers and support!!! They help put a smile on my face! SOON this will be over! :)

Today's Daily Affirmation:

"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight." - Proverbs 3:5-6

Hope everyone is doing great!

Rachelle

Brain Tumor - BEGONE! :)

2010-01-22T21:02:00.000-08:00

Today was my last treatment. It was the hardest day. I went in really tired and when I got there, they were running late so my 'routine/schedule' was kind of thrown off. Once I got in and they put the mask on, it seemed a lot tighter than the other days so that made the whole session somewhat unbearable at times. I really had to talk myself out of not freaking out a few times. Kept trying to keep my mind in my 'happy' place....thinking of my family and my babies.... - they got me through it and before you know it, that vault door opened and Hallelujah - IT WAS OVER! :) I did forget my prayer quilt today and was SOO bummed (maybe that is why I had more anxiety!!) :( BUT, when I got home, I wrapped it around me while I rested. :)

Today's last session really kicked my butt - tired, nauseous, dizzy at times, face twitching at times, etc.....
After my treatment, I met with the doctor and he said to expect more fatigue/lethargy for the next 2-4 weeks. If that's all - I can handle that. I do have to notify them right away if I lose my hearing or my face goes completely numb (like a Bells Palsey) - they will start me on an antiviral and steroids to get the swelling down.

So, now it's 'waiting' to see how things go, my 2 week follow-up (sometimes I will write f/u for follow-up.. just fyi!) ha ha..nancy :) and then my MRI 2-3 months down the road.

YES! I am stoked this over!! Tired as I am, I will make it through the next few weeks.............I am just resting, watching the "Hope for Haiti Now" telethon and it just makes me think. Yah, my situation has sucked and has been very stressful but it still is no comparison to the suffering and hurt other people in this world are enduring. My heart goes out to the people in Haiti who have lost their sons, daughters, sisters, brothers and to those babies and children who are now orphans and feel alone and afraid. If I could reach through that TV, I would grab all those kids/babies and just hug them to death! There are so many 'other' things that will put 'your' situation into perspective. Go to hopeforhaitinow.org for more information on making a donation. There is nothing that heals your soul better than to give.

Today's Daily Affirmation:

"Stop worrying about the potholes in the road and celebrate the journey!"~Barbara Hoffman

AMEN TO THAT SISTER! My journey has been FULL of potholes - but I have come 'full circle' with so many things in so many ways!! Wake up each morning thanking the good Lord for ALL the good things in your life.....because things could ALWAYS, ALWAYS, ALWAYS be worse!
Have the BEST WEEKEND EVER! :)

Hugs -
Rachelle

Yea! I am done

2010-01-22T15:49:00.000-08:00

Yea!!! I am done but I can hardly write right now..........I am sooooooooo exhausted.

I will try and write later..
Thanks everyone for you thougths, emails, texts, prayers, good thoughts and everything!!
Hugs -
Rachelle

2nd Treatment went good...

2010-01-21T18:50:00.000-08:00

2nd Treatment went well. I knew what to expect so I walked in, they were ready for me, went right to the table, put my prayer quilt on and they started. Still had a 'little' anxiety when they first put that mask on but after it was all situated, I was good to go! Got home and had some flowers awaiting me at my front door. My best friend Kim, who put together the fundraiser, had some flowers wired to me - also from her mom. It was VERY sweet and I miss her and wish she could be here (her and her family had a family vacation planned way before I knew when my treatments would be....she is the one who went with me to Stanford in my first few postings). LOVE YA KIM & TONI and can't wait to see you when you get back!!

Really tired today. Didn't sleep well last night with all the rain......PLUS, we have a skunk family living out under our little playhouse in the back and I could hear them 'frolicking' about 4:00am. I got up and turned on our patio light and saw one scatter! UGH! I want those little critters to find a new home! They skunked our next door neighbors dog the other morning so we tried the 'home remedy' of moth balls under the house...........the odor is supposed to send them elsewhere (I guess they have very sensitive noses and don't like that smell) so we'll see! I called a 'skunk' trap person and they wanted almost $300 to put out a trap (not kill them) and relocate. Uh, we'll try the moth balls first. :)

Besides that, just as I was ready to go to sleep last night and the house was quiet, I noticed this 'static, buzzing, high pitched type noise' in my right ear. Side effects from the treatment but it took me a LONG time to fall asleep and 'not think' about it. I hope it's not worse tonight.

Tomorrow is my LAST treatment - yea!!! Then I will have a 2 week, post-treatment follow-up and then about 2-3 months down the road, a f/u MRI. Can't wait for this to be done!!!

Today's Daily Affirmation:

"I don't really wish that it didn't happen because it has changed my life so much. If it didn't happen, I don't know if I ever would have waken up." - Ashley Smith

DITTO on that!
Happy Friday everyone!!! It surely will be for me!!

Hugs!
Rachelle

One down, two to go!!!

2010-01-20T11:27:00.000-08:00

Well, I survived my treatment. I am finally posting this. I have written this over hours now (a little here and there). I have been pretty tired all day but I know a lot of you have been anxiously waiting to see how it went so I need to update my loyal followers!! :)

I am posting some pix of my day so you can get a visual. Chris and I got there close to 7:45am, I met with my oncology/radiation doc (Dr. Damon Smith of Cyberknife SD....I mentioned him some posts back when I sent my appeal to the state. He was the doctor who I think 'sealed the deal' on my appeal. Not only did he give me a compelling clinical study to send with my paperwork, but his report stated that Cyberknife is the 'standard of care' for my tumor.) I REALLY like him - he is great!

So, he showed Chris and I how they 'mapped' out the radiation (see the pix with him pointing to the computer screen). The Cyberknife 'robotic arm' will zap my head in about 183 (?) different angles. The AMAZING thing about this (because I was so worried about moving) is that it shoots a quick xray prior to the 'zap' and if you have moved, the 'arm' adjusts to your movement - making this treatment within 'millimeter' accurate! WOW! Then Dr. Sanjay Ghosh showed up (he is the neurosurgeon doc who originally told me to go to Stanford, get an opinion and then he wrote a report on how he recommended Cyberknife and so did ALL the physicians at the Senta Clinic...remember that? That was like gold for my appeal too!) :) They both said they were happy to hear that I won my appeal.. :) Dr. Ghosh went over the critical areas of my brain and how those areas will get such 'low' dosages of radiation. I was really worried about my brainstem (constant/high radiation to that area can mimick stroke like symptoms, thought processing problems, etc..). He said that was extremely low. Good to know! They both said that the 'mapping' of my radiation was very clear and mapped out great. ALL of that info made me feel great right before I was ready to start treatments. (see the pix of both Dr. Smith on the left and Dr. Ghosh on the right).

Side effects: Fatigued (after each day, it will get worse) and they said that at the post-2 week follow up, the main symptoms are fatigue still (minimal to severe...depends). Headaches can be common and some irritability/skin sensitive to the areas of my head getting radiated. I can also lose 'patches' of hair but he said it's very uncommon. He crossed off the 'brain swelling and death' for the 'severe' side effects....saying 'You don't need to worry about that.' :)

So, into the 'room' and there I see the mask on the area where you lay. So, I told myself, 'this mask is my friend..it's purpose is to keep my head very still to provide accuracy of treatment.' Suddenly it wasn't too bad...went into a 'little' freakout mode when they first put the mask on then snapped it on tight. I kept telling myself - 'mind over matter' .....this is a piece of cake compared to all the other crap I have had to deal with this last year! Plus, there are WORSE things going on in this world - look at the poor people in Haiti! :( I am finally here so BRING IT ON! :) After they first put it on and then secured it, the tech started some really soothing 'spa' type of music........then they shut the 'vault like' door and it began! OH! I also brought that awesome 'prayer quilt' with me and I felt surrounded by love and prayers! :)

When you are laying on the bed, you can see through the 'mesh' mask and there is this beautiful pix of this sky with a tree and leaves on the ceiling. So, I focused on one part of the tree and just stared at it - THE WHOLE TIME. I figured that would keep my head from not moving. So, I stared and I focused on my babies, the soothing music, my husband, all the support and love from ALL of you, bible scriptures, etc.... I didn't feel a thing the whole time except after about 30-40 minutes ( I am guessing), my knees starting hurting (they put that pillow under your knees) and then my finger was bothering me from the pulse-ox monitor they put on your finger. Other than that, not too bad! :)

The machine (see pix) is a robotic arm that moves around and it looks like there is a big 'eye' on the end of the arm. That 'eye' will come around my head at different angles, and then I will hear a 'beep/buzz' like noise when the radiation is being done. The whole thing was kind of surreal.....I kept thinking, "Am I really here? Getting Cyberknife? No more fights with my insurance co.? I am getting radiation to my head? - it was weird, I can't explain it. Luckily I only did that for about a minute and then it was like, "Focus on just getting through this!"

So, I hear everything shut down , the big door opens and it's done! One down, two to go. Dr. Smith said everything went as planned and that it went a little faster because I didn't move (and yes, I really don't think I moved AT ALL!). So, now I await treatment #2. At least I know what to expect.

Came home and just laid around. I was tired but not until about an hour or two passed that I was much more tired. Took a little nap but then got a headache so I just laid around and took it easy. Around dinner time my head kind of felt in a 'fog'.....going to bed early tonight. If I can describe it best, it feels like I have a hangover! But, I didn't have a 'fun night' of anything getting it! :) Drank lots of water and going to get a good night rest for tomorrow!!

Today's Daily Affirmation:

“It is our attitude at the beginning of a difficult undertaking which, more than anything else, will determine its successful outcome.” - William James

Looking forward to crossing off #2! THANKS TO EVERYONE for your texts, emails, call, etc.... You keep me going!! :) :)

Hugs!
Rachelle

Tomorrow's the big day!!!

2010-01-19T20:36:00.000-08:00

CYBERKNIFE! HERE I COME! :)
I have been waiting for this day for months and now it's finally here!
I cannot believe it! What seemed like years, came VERY quick after my appeal was overturned.
I asked for this, I want this, I need this - but I am still scared to death of 'it'!

I actually did pretty good today. I was sooooooooo busy at work that I didn't really think about it all - until I started
to say good-bye to some co-workers and then their sweet words to me made my heart melt and when I had one final good-bye from a dear friend on my way out, I just cried. It was GOOD crying though! :)

Got home - HUGGED my babies to death and then my mom came over and Chris and I enjoyed a nice, relaxing dinner. It was all good.

It's 8:40, I am exhausted and ready to get a good nights sleep! :) My treatment is at 7:45 tomorrow morning so if this 'happens' to run across your mind at that time, PRAY for me! :) I would appreciate it! Pray that I don't freak out over the mask and that I can just lay STILL for that hour! Before I know it, the first one will be over and I can cross it off my list! :)

Today's Daily Affirmation:

"Nothing is predestined: The obstacles of your past can become the gateways that lead to new beginnings." - Ralph Blum

I love this quote. ALL the obstacles I have had are leading to a healthier, happier 'me'!! I have said this before and I truly mean it.....if I could go back in time, I wouldn't change a thing. SO MANY GOOD THINGS have come from this and there is still more to come - I feel it.

If I can't post tomorrow - my husband will!! (he doesn't know that yet :) :)

MUCH LOVE and have a great night! :)
Rachelle

6 days and counting!!!

2010-01-14T20:30:00.000-08:00

FYI - Did you know that May is "Brain Tumor Awareness" month?? :)

To check out information on Cyberknife - go to www.accuray.com

Today's Daily Affirmation:

"Feed your faith and your fears will starve to death." ~Author Unknown

This is SO true! When I start thinking about next week, I am really trying to just focus on the positive, all the good that will come of it AND that in a short time, it will ALL BE OVER! :) My faith is fed by my prayers, your prayers, support, positive love and energy all coming my way! You have all helped me on my journey and I couldn't be more grateful!!

Happy Friday! :)
Rachelle

Call from Cyberknife SD...

2010-01-13T20:13:00.000-08:00

Today I got a surprise call from the oncology/radiation physician who will be treating me from Cyberknife SD. He just thought he would call and let me know that there was no change in 'size' from my last MRI to the one I had on Monday. They were about a month apart so it doesn't surprise me BUT....with me, you never know! :) He also wanted to congratulate me on getting the treatment.. (smile)!! :) :) I told him the clinical study he gave me AND his report really helped a lot (I really do think that that was the hook-line-sinker for my appeal).

Since he was on the phone, I thought I would take advantage of it and ask him some questions. I wanted to know more about the procedure, side effects, what to expect, etc....

He said that I should expect to feel 'o.k.' for the three days of treatment. But, again, EVERYONE is different and responds to treatments differently. My father-in-law just had Cyberknife about a month ago and he said he felt very fatigue after each treatment (he also had 3). The doc said that most people tend to get really fatigued after about a week of treatment. So, I asked him a few other questions (a few from when I went online last week and freaked myself out...remember that??). When I told him I went online and had a few questions about some things I read, he laughed. I KNOW I am NOT the only patient who has done this to themselves! :)

So, I felt a lot better after talking to him. I feel more 'at peace' I guess with the whole situation. This is the best treatment for me and it's going to be the 'end' of this awful thing.

Today's Daily Affirmation:

"Today I will listen to my heart. I will feel my feelings fully without judging them. If I allow myself to feel all of my feelings fully, regardless of whether they are sad, angry, or joyous emotions, my heart's wisdom will heal my pain." - Dr. Christiane Northrup

So, I listened to my heart and it's telling me, "everything is going to be OK!"

Good night and Happy Birthday Nancy!! You rock and LIVEstrong girl! We will both celebrate when our radiation treatments are over!!

Hugs -
Rachelle

Cross off MRI! :)

2010-01-11T20:14:00.000-08:00

Today I had my MRI. I got there early (hoping I would get in early) and they were totally running late. So, I sat in their little waiting room and waited 45 minutes until I got in. Then I had to get another IV with dye - AGAIN! Except this wasn't the 'warm, peeing feeling' dye I explained in my earlier post. This dye is very short lasting and I did half my MRI with contrast and half without. I did get that metallic taste in my mouth and it feels cold as it goes through your IV. Usually my MRI's would take about 30 minutes - today's took 1 hour!

If you have had one before (and this is my 4th in a one year period), they are SO LOUD! Banging/clanging noise and since I am getting my 'head' done, it's all right there. They give you earplugs, a nice warm blanket (since you freeze your butt off in these places), a cloth to put over your eyes (if you want) and then they put you in the 'tunnel.' I am getting used to these but I always get that 'anxious' feeling as they are rolling you in.

Believe it or not, I think half way through....I feel asleep! I hope I didn't move my head! I don't know how people fall asleep with all that noise but she said a lot of people do (maybe it's the whitenoise in the background, boredom....who knows!).
So, the good thing about today - I got a little 'power nap'!! (smile)..

So, I need some prayers for this:
- MRI/CT are nice and clear for the physicians who are looking at it and mapping out my radiation
- The physicist (who actually maps out the radiation) is ALERT & ON THE BALL when he/she is doing this!

That is what will go on this week. My neurosurgeon will 'map out' the areas of the brain to stay away from (or the critical areas that will hopefully get very small doses of radiation) and then the oncology/radiologist doctor and physicist will map out the radiation around the neurosurgeon's recommendations (something like that!) :)

I can't believe it's now 8 days away!!!

Today's Daily Affirmation:

"I trust my body's urge to heal. I don't have to make it get well. All I have to do is support it.
I am becoming healthier every day." - random healing affirmation

I do feel like I am 'physically' better just from getting the news of my appeal. I don't have that 'added' stress in my life and ALL I focus on now is healing. Each day gets better and better.

Hugs and g'night! :)
Rachelle

Great weekend!

2010-01-10T20:22:00.000-08:00

What a great weekend! I have been in 'nesting' mode since I found out the date of my treatments and I have been trying to get a lot of 'little' things done that have been on my 'to-do-list' for awhile and I feel like I got so much done this weekend!

Friday I went and saw Dr.Won. Got one more month of herbs to help detox my body through the radiation. Dr. Won is ALWAYS so good to talk to. He is very motivating when it comes to eating and getting healthy and he is so passionate about his work, that it makes you want to do EVERYTHING he says! It was great seeing him, I also got some pills from him (I call them rabbit turds because that's what they look like) and then he gave me some 'drinkable' vinegar. I have heard from books, tv shows, etc... that one key ingredient to a long life is drinking vinegar (and or eating lots of it!). Well, I tried to drink some one time and thought I would die! It burns when you swallow it and it SO strong. Well, he got some from one of the secret (smile) markets he goes to and it's 'blueberry flavored/drinkable vinegar.' It's actually not bad! So, I take 2tsp/twice a day. I remember seeing a documentary on a lady who 'drank' vinegar (just a little) everyday and was like over 100 years old. Who knows but I am sure it will just help keep my insides 'clean!' :)

Tomorrow I get my MRI and then that is IT until I start my treatments!! Trying to stay physically and mentally strong for the next 10 days until it starts! I cannot wait for this to be OVER!!

Today's Daily Affirmation:

"I lovingly release the past and turn my attention to this new day." - Random healing affirmation

One day at a time....that is what I try and focus on. No sense in dwelling on things that haven't happened yet - waste of energy! Right?

Hope you all had a great weekend too - can our weather get ANY better???!!!!!
Hugs :)
Rachelle

One appointment done!

2010-01-07T20:25:00.000-08:00

Today was face mask fitting and CTScan at Cyberknife SD.
I started asking my '100' questions to the nurse and she couldn't answer too many - saying that my neurosurgeon would be able to answer most of my questions before my procedure. So, because I won't see him for over a week, I did a REALLY dumb thing when I went home - I went online!

OK - when you have been diagnosed with something, it's a dangerous thing to go online because you can scare the shit out of yourself with all the information out there. Don't get me wrong - the internet is one the BEST things to come around and it has helped me a lot on my journey BUT - and I mean a BIG BUT...........you can find lots of information that is misleading, not true, opinions vs. facts, etc.............

So, I started looking up 'questions' I had (and I have researched this to the hilt but I ALWAYS have more questions.......smile) and just started reading some stuff about Cyberknife that kind of freaked me out! And the stuff that freaked me out was a 'chat' board on people just giving their opinions. I should just take it with a grain of salt and I don't know how I came across it but it pushed that little 'oh shit' button in my head!! So, I instantly turned it off!!

Am I freaking out because it's all happening so fast? Am I scared - f*$& yah! BUT, I have to keep bringing myself 'back' to where I was just a few weeks ago - pushing for this treatment because IT IS the BEST, state-of-the-art treatment there is today for 'my' type of tumor. I think the 'reality' is just finally settling in and today made it even more real.

Back to my appointment!! I met with the nurse and she started an IV on me (for the contrast dye for the CTScan), asked me questions and then briefly went over the whole procedure. Then we went to get the face mask fitted. The face mask is necessary because you MUST keep your head still during the procedure.

First, they had me lie on a table in the room I will be getting my treatments (and dang it! I forgot my camera! I was going to take pix so you could all get a 'visual') :( Next visit! :) So, I am laying there and the nurse says, "We are going to put this mask on your face, it's going to be wet and warm and feel a little constricting at first. But, you will be able to see and breathe through it." Great............can't wait! So, they stick this wet, warm, meshlike mask that feels like soft plastic and then after about 5 minutes starts to harden and conform to the shape of your face. The WORST part about this whole thing is that when they come over and plop this thing on your face, they pull the sides (by your ears) snug on both sides of your head down to the bottom sides of the table - and then secure it onto something (I can't see this but that's what it felt like). They need it snug so that you won't move your head. You have to be as still as possible during this whole procedure. Egads! So, all I kept thinking was, "What if I have an itch? Sneeze? Cough? Laugh? Cry?" during the procedure? Is the radiation beam going to hit something that isn't going to be good for me? Egads again!!! So, I failed to mention that she also said that if I 'need something to relax' AKA: drugs/sedatives....they can always give me something prior to treatment! OK - that made me feel better. BUT, then I thought, "What if I fall asleep if I do take a sedative/relaxer and get that 'sleep twitch' you can get as you fall asleep?" - and then move by accident! I really am my own worst enemy. UGH!

Back to earth Rachelle. Mind over matter. I am not that claustrophic but I was thinking I might instantly diagnose myself today as being one! So, we get this mask thing done..............and mind you, that was only a few minutes with it on - my treatments will be about 45min-1hr each!! Note to self: seriously consider a sedative p/t treatment!

Then, I go back to the waiting room and sit and wait for my CTScan. So, they call me back in and we go upstairs and the nurse has a 'crash cart' with her. I KNOW what a 'crash cart' is because of my medic days. It's the cart they have at medical offices just in case someone goes into cardiac arrest. It has all the Advanced LIfe Support equipment on it in case they need to start resuscitating you. So, she then starts telling me that 'some' people, but "very few" can have severe reactions to the dye they use. Then I ask her if it's the dye that 'makes you feel like your peeing on yourself' and she said yes. So, I then didn't have to worry because I have already had that one. :) And yes, this dye - once they start injecting it into you, gives you a metal taste in your mouth and then a warm feeling throughout your body. Starting at the top of your chest down to your legs - and when it hits the bladder area, you really do feel like your peeing!

They then put me on the CTScan table and I see this lady walk in with my mask. Hmmmm?? I guess it doesn't want me to leave it alone?? And the lady says, "You will have to wear this mask during your CTScan." Greaaaaaaaaaattttttttttttt..... I know, I sound like such a wuss from the 'bring it on, Erin Brockovich" I was just a few weeks/months back?? HUH??

They continue to inject me with the warm, pee feeling liquid and then put the mask on. This time I tell myself - don't freak out! It's amazing how your mind works. So, I have it on and keep telling myself, 'It's not that bad, it's not that bad' - over and over. And soon enough, "IT'S NOT THAT BAD!!" :)

So, that lasts about 10 min or so and then I am done. IV out, CTScan done and fask mask fitting done!! MRI is left and then treatments will start!

Today's Daily Affirmation:

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

Thanks Stasi for reminding me of this today. I know my post today has a little bit of drama in it and I am just trying to 'take this all in' but at the end of the day, my situation is STILL nothing compared to some of those dealing with much bigger battles. In 15 days, I will be DONE with this and be able to start healing and move on. And I can't wait! I do have to say that I feel like I am getting red carpet treatment (as I posted earlier). Everyone in that office today was VERY nice, helpful and made me feel comfortable. The office was REALLY nice and everything just looked TOP NOTCH/State-of-the-Art...really! Made me feel good for what I worked so hard for!

Tomorrow I am off to see Dr. Won in San Clemente. He ALWAYS makes me feel so much better and gets me on a good path of eating right and taking care of myself. I am picking up some more herbs that will help me during my radiation and flush out all those nasty toxins! Can't wait to see him!
Have a great night and good Friday!! :)
Hugs -
Rachelle

My treatments are scheduled!!!

2010-01-06T21:34:00.000-08:00

I talked to Cyberknife SD today and got all my pre-op and radiation treatments set! I can't believe how fast this is all going so far! They are definitely on top of it and I couldn't be happier! :)

Today I had some bloodlabs drawn. I guess they were checking my liver and kidney functions to see if they are working properly (I think to make sure they can process the radiation??) - not quite sure but I will find out tomorrow!
Tomorrow I meet with the RN at Cyberknife and we are going over all my pre-op info, face mask fitting and CTScan. Then Monday I will have my MRI and my 3 treatments are set for the 20, 21 & 22 of January!

I will find out more info for you tomorrow!!

Today's Daily Affirmation:

"I trust my body's urge to heal. I don't have to make it get well. All I have to do is support it.
I am becoming healthier every day." - random Healing affirmation

Now it's time to just let the 'process' begin. I have done EVERYTHING to get myself here and I have faith that things will all work out.

More tomorrow!! Hugs! :)
Rachelle

The light at the end of the tunnel is getting bigger!!!

2010-01-05T20:23:00.000-08:00

Sorry I haven't posted in the last few days...been busy with so many 'little' things!

Anyway, here is the most recent update!! I forgot to tell all of you that I went and saw the neurosurgeon that I really like in San Diego last week for his 'advice' on where to get treatment. I already posted earlier that I saw the oncology/radiation doctor here in San Diego that does Cyberknife and I really liked him. So, I just wanted to talk to the neuro-doc again because this decision is really important to me. Obviously because I want a really good doctor treating my head!

We discussed Stanford and San Diego and I wanted to have a back-up plan to have a doctor that I feel comfortable with treating me here in San Diego 'just in case' Sharp didn't approve Stanford. Well, they didn't. They approved the Cyberknife treatment in San Diego only and with the oncology/rad. doctor I saw. And I am o.k. with that.......ONLY because he was trained by the doctor I consulted with up at Stanford AND I felt really comfortable with him when I consulted with him AND he has done hundreds of intracranial radiation treatments (really important). Now, my neuro-doc and this San Diego Cyberknife doc work as a team. The neuro-doc gets the MRI/CT and he maps out the really important areas of the brain to stay away from. Then the oncology/rad doc will work with the physicists who 'map out' where my radiation will take place in my head. The whole thing is pretty fascinating. And the ACCURACY of Cyberknife is even MORE fascinating. I KNOW that this is the best treatment for my brain tumor.

I was ALWAYS shooting for Stanford - and my appeal was too but. I will tell you that if I didn't feel comfortable with the doctor here, I would go back and fight some more. It's my fricking head so I do not take that lightly - at all.

So, last I posted was that if I didn't hear from them Monday, I would call them Tuesday (to schedule an appt.)....
They DID call me yesterday (but I got the message after they had already left), so I left a message and sure enough, the 'scheduler 'called me at 8:30 this morning (I already like them!!) :)

As of right now, I have blood labs tomorrow, CTScan and face mask fitting on Friday, MRI on Monday and 'tentative' Cyberknife on the 20, 21 & 22. I will have 3 sessions at 45min/each. Can you believe that? I feel like I am getting the red carpet treatment!! It's all working out as I imagined! :) The hard part is over and now the light at the end of the tunnel is getting bigger and bigger!

I am trying, really trying hard NOT to worry about the radiation treatments - TO MY HEAD! I am getting the best treatment out there so that is good and the alternative is worse so I have no choice. I have been pushing and pushing for this but now the 'reality' has set in that I am getting it - AND SOON! Egads!! So, I guess this is good - not much time to 'think' about it! Before I know it, the 20th will be here!

I am SOOOOOOOOOO ready for this to be done!! My goal was to get this done by the end of 2009........so I came pretty damn close!! (smile) :)

Today's Daily Affirmation:

“Fear can keep us up all night long, but faith makes one fine pillow" - Unknown author

I have always been told by so many people that if you are worrying, you aren't trusting your faith in God. It's so true BUT that is much easier said than done! I do have to say that as I get older, the worrying does become less and less and through this journey, I have really learned to focus on the 'positive' things and NOT what I have NO control over. It's been really hard sometimes but when you can get past that 'feeling', you just feel so much better!!

I hope 2010 has been as good to you, so far, as it has been to me!!!

Blessings to you all!! NIGHT! :)
Rachelle

I gotta feeling....

2010-01-01T19:55:00.000-08:00

I gotta feeling................that 2010 is going to be the BEST year!!!

So, I was SO tired last night - just emotionally drained from the afternoon. I felt like going to bed right after the babies but I was like, "It's New Year's Eve and I HAVE to just celebrate a little??!!!" So, my devoted wine-o neighbors (smile), came over and had some wine, we watched "Julie & Julia" and then I stayed up to watch a little of "Dick Clark's New Years Eve" program (have watched that since I can remember). They had the Black Eyed Peas on and so I tried to stay up as long as I could but I made it to 11:15 and then crashed!! It was a fun, relaxing night. So much to think about and SO glad that 2009 is over!!

Although I think I can say that 2009 was the worst year of my life, so many great things came from it - so it ain't ALL bad. I always think (and now know) that from bad, tragic, hard times come a lot of good things. You just have to find them and focus on those.....because if you don't, you will lose yourself into a deep, dark place (which I did a few times and that's NO fun!).

So, it's 2010 and do I have resolutions? Hell ya....but, my list is short this year. I used to make these really LONG lists and then I would hardly get any accomplised so I think it's best to just focus on a few really important ones and then go from there.

Today was awesome and I already feel a sense of 'renewal' or 'fresh start'!! I STILL cannot believe they called me yesterday but a friend of mine told me that insurance companies like to 'close out' open cases/appeals, etc...by the end of the year so it didn't surprise her. Whatever the case, I am just GLAD THEY DID!!! I would have DIED had I not gotten that message or gotten a hold of someone and had to wait until Monday! EEK! Glad I checked my message right away!! :)

This morning I woke up with a HUGE smile on my face (although I STILL cannot wait until my babies learn to 'sleep in' a little!!).
Chris and I took the babies to b-fast and then my dear friend came over and hung out a little, then naptime (for everyone!) and then Chris and I went to a really nice dinner on the beach to celebrate (since he had to work 24hrs yesterday). I am very lucky to have my husband! He has stood by me and has supported me when I know I wasn't the nicest person at times dealing with this whole mess! At times I felt like I would lose who 'I was' and he really showed me the patience I needed to just get through this the way I needed to deal with it. Thank you my dear husband - I love you!!!

I have NEVER I think in my whole life seen a sunset like the one tonight. It was AMAZING!! Chris and I both said that we have never seen the sky that RED! It was phenomenal!! I am posting some pix of it and I didn't do anything to the color - that is a raw pix of what it looked like! It was just beautiful - almost like a sign from God of the beauty 2010 has to bring.

It's now 8:07 and I am SO ready for bed! I think I am still drained from yesterday! I still want to thank everyone that has helped me get where I am, has prayed for me, sent me good thoughts/energy, gave me a donation in some way and/or maybe just sent me a sweet message or email. I feel ALL the love and I hope in some way to repay that back when I am done with this! I don't know how but my mind is thinking of a lot of things! :)

Today's Daily Affirmations:

"Fall seven times, stand up eight." ~Japanese Proverb

"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Author Unknown

"Stubbornly persist, and you will find that the limits of your stubbornness go well beyond the stubbornness of your limits." ~Robert Brault,

"The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever." - Psalm 23

I think Psalm 23 is one of my favorite passages from the bible.

2010 - here I come!!! There is NO stopping me now!! :)

I hope EVERYONE had a GREAT New Years!!!

Many hugs!
Rachelle

One more thing...

2009-12-31T13:43:00.001-08:00

THANK YOU to the Law Offices of Greg Ryan!! I couldn't have done this without your help!!!!
I will forever be gateful to you and your staff!!
Thanks so much!!!!

More later! :)
Rachelle

YEA!!!! I F'ING WON!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-12-31T13:04:00.000-08:00

Oh my gosh!! I WON, I WON, I WON!!! Hard work DOES pay off and GOD IS GOOD!!!

I got a call today from the State of California.......well, actually my cell phone was ringing and it was an 'unknown' number when it came up so I did't answer. Then there was a message so I checked my messages and it was a call from the State Dept. telling me they had a decision on my appeal and to call them!! OMG!!! So, I called right away and of course, got voice mail so I called again and again until someone answered (ha ha..reminds you probably of my earlier entries of "Hi again, it's Rachelle from San Diego!!).. :)
So, "Tracy" answers and tells me that my request for stereotactic radiosurgery with Cyberknife HAS BEEN APPROVED and that I can call right away to get an appointment!!! Uh, are you kidding me? Are you for real?? I didn't even know what to say...my mind and heart were just racing because I have been waiting to hear those words for MONTHS!!!!!!!!!!!!!

I got off the phone and just totally cried (in the parking lot of Trader Joe's). I was just overwhelmed with so many emotions and it was like the floodgates just opened and it wouldn't stop. So, after I could 'see' again, I drove home and called Chris, then my attorney, then the Cyberknife Doc in San Diego (to make an appt) and then I text'd my friends hubby (remember, the doctor who told me that I would 'NEVER' get PPO treatment with an HMO????!!! It felt good sending that one off!! :). Then I got home and saw my little boy (Camryn was napping) and I cried again. He is so sweet and says, "It's o.k. mommy." It's amazing the strength you find in yourself when you have children.

Then - I sent out a text to ALL my contact people on my phone. If you didn't get it or missed it - sorry! :( I also put a post on FB and of course, on my blog!! I have SO MANY people to thank!!

I am still in awe and just can't believe it's almost over!!! I am hoping to get in asap to get this OVER WITH!! I wish I could personally hug and thank each of you but just know that I am overwhelmed right now with a heart FULL of gratitude!!!!

Today's Daily Affirmations:
I can do all things through Christ which strengthens me.
--Philippians 4:13

If you have faith as a grain of mustard seed, you will say to your
mountain, "MOVE!" and it WILL move... and NOTHING will be
impossible for YOU! - Matthew 17:20

If you don't believe in the power of prayer - think of me.
If you don't believe that hard work pays off - think of me.
If you believe that the impossible isn't possible - think of me!!!

So, now it's approved and now I am thinking, "OH SH&#, I am going to have radiation treatmtents to my head??!!" OK - I can handle this. It's all in God's hands and so far, he has been pretty darn good to me!!! It will all work out, I will be just fine and all I can say is:

ALL IS WELL IN MY WORLD TODAY!!!!

Happy New Years to ALL of you and thanks again for everything! You guys ROCK!!!

Hugs and kisses!!!!
Rachelle

Appeal is off to the State!!!

2009-12-23T20:44:00.000-08:00

My appeal/grievance was sent off to the State today via overnight delivery today so they will receive it tomorrow and then the clock starts ticking. My attorney wrote up a sweet draft - about 5 pages total to the IMR (Independant Medical Review) on my case and why I need what I am asking for. I was really happy with it and I am amazed at how fast my attorney has been able to draft these up and get them out in the mail! As I have said before, I don't know what I would do without him!

So, it's off and running and out of my hands - ONCE AGAIN!!! Weren't we just doing this?????!!!! :) This is it - it's all I can do so we'll see what they have to say. My postings might not be as often now because it's just a waiting game. I do have another f/u appt. with the neurosurgeon here in San Diego to discuss his opinion on treatment here vs. Stanford. So, I can't wait to meet with him (in a week or two). Let's pray that I get an answer 'sooner' than 'later!' :)

Today's Daily Affirmation:
"Perserverance is the hard work you do after you get tired of doing the hard work you already did." - Newt Gingrich

I have posted this quote before but it comes to mind because I feel like a 'been there done that' is happening again. BUT - it's ALL part of the process, the journey, the game - whatever you call it it is what I 'have to' go through to get this done. You DO get things by staying focused on your goal and that is ALL I see right now.

I want to wish all my '30' followers and those of you who have followed me on my journey a VERY, MERRY CHRISTMAS!!! Enjoy these special holidays with your friends and family and be extra grateful for the simple things we take for granted! God really is good!!!

Hugs and g'night! :)
Rachelle

One year ago today...

2009-12-21T19:31:00.000-08:00

One year ago today my whole world was turned upside down. My little newborn was only 10 weeks old and I remember thinking that I "knew" something was wrong with all the vertigo (dizzy) spells I was having. After insisting on an MRI, I remember the doctor calling me around 4:30pm and telling me, "We found something."
Of course Chris was working that day (24hr shift) - never fails....he always seems to be working when some 'crisis' happens at home! :) And so it was just me alone with the babies to take it all in. That night was probably one of the worst nights of my life - obviously because I could only think the worse. Even in my paramedic days, hearing someone with a 'brain tumor' wasn't the best news and the outcome usually not so good. Now, I am more educated on the several different kinds of brain tumors and how many are benign and don't have horrible outcomes.

I have certainly had my ups and downs this last year. I think what I mostly remember was trying to stay focused on my goal...getting the 'right' treatment for my tumor. I have been determined and I know I will get it but for some reason I had to hit quite a few bumps to get there. In my very first post, I said that if I could turn back time I would not change a thing...and I still wouldn't. Crazy as it sounds (because this certainly has been quite a stressful year), I have really grown as a mother, wife and human being. I am not the same person I was and I am liking more of who I am becoming.

It looks like my appeal to the state will be turned in possibly tomorrow. I am sure everyone up north is on vacation this week or next but we are hoping to hear 'something' in the next 2-3 weeks. My goal is to have my radiation treatments done in January so that I can start the new year off with this tumor being taken care of!!! Now, some of you think I will be crazy to say this but my journey won't end there.

After my treatments are done, I will have follow-ups to make sure the tumor isn't growing but I will be on another mission. That one being to get HMO's to pay for Cyberknife treatment for 'my' and other intracranial tumors in which it is considered the 'standard of care.' So, don't be surprised if you catch me on a local news station, etc.......either by myself or with my attorney bringing attention to this issue. If I can spare someone else the stress I have endured this last year, it will certainly be worth it. I am even going to contact Cyberknife HQ to see if they will take my testimony and use my 'case' that may be beneficial for the awareness of Cyberknife treatments.

I think it's complete B.S., what I have had had to do to 'jump through the loops' to get what is right but that is the way our HMO systems work. So, I will win my appeal and if I don't get them to change, then I will get the word out to other people that you might have to fight to get what you want but YOU CAN!

I can't wait for 2010!! It's almost like I feel a 'fresh start' coming my way! :)

Today's Daily Affirmation:
"The meaningful question is never what we did yesterday, but what we have learned from it and are doing today." - Marianne Williamson

I have learned SO MUCH on this journey and it's almost like it's been the year of finding out who I really am, what I am capable of and how I am going to use this to help other people. I look forward to the plans God has for my life and what's most imporant is that I know I will be around for a long time for my babies!!!!

I hope you all enjoy this Christmas season and are especially blessed with all the simple things in life! A year has gone so fast and I hope that next year I will slow the pace down, just a little and take more time to just 'smell the roses.'

Have a great night! :)
Hugs -
Rachelle

Almost complete!

2009-12-15T20:46:00.000-08:00

I received the two doctors reports today. I almost started crying when I read one - it could NOT have been more PERFECT! It said everything I needed to read and the other doctor also supported the Cyberknife treatment. I was SO excited to get that over to my attorneys office!! I have one more thing to get and then it will be turned in tomorrow and hopefully mailed out tomorrow or Thursday. CANNOT WAIT!

I felt really good about my whole appeal/grievance after reading those two reports. After I picked them up, it really got me thinking about all those people out there who trust what their 'one' doctor will say and just do it. Had I not gotten '3' different opinions in the beginning, I would not be where I am today. If you ever get a life-threatening type of diagnosis, I would HIGHLY recommend (this is just my opinion from being a paramedic and what I have learned on this journey) to get at least 3 different opinions. If you read back to my first blog entry (I believe), I contacted a doctor up at Stanford and asked him to refer me to someone he would trust. And he did and I saw them! ESPECIALLY if you are in an HMO!! Remember, HMO's are ALL about saving a buck, or penny for that matter. So, just because you are in an HMO doesn't mean you cannot fight to get PPO treatment. I have a friend who's husband is a doctor and he told me in the very beginning, "You will never get PPO treatment from an HMO." Hmmm, I did not like hearing this and I have a feeling he will be one of the FIRST people I call when I get my APPROVED LETTER! :) :) :)

Today's Daily Affirmation:

"First they ignore you, then they laugh at you, then they fight you, then you win." - Gandhi

LOVE THIS! It's so true.... doctors ignored my 'concerns' at first, then they laughed at me when I said I want to go to Stanford and then they fought me (denial, denial, denial) and soon I will win.

HUGS & NIGHT! :)

Rachelle

Almost ready to appeal to the state...

2009-12-14T20:19:00.000-08:00

Tomorrow I pick up the two doctors reports from last week and then I will get them to my attorney and I am hoping my appeal/grievance to the state will be in the mail Wednesday or Thursday. As with my appeal to Sharp, I am still asking for an 'expedited' response because the tumor is STILL growing and damage can be done at anytime. Most doctors have stated in their report that treatment needs to be done as soon as possible so I am hoping that will help.

So, here we go again...................

I am feeling good about this...how can I not? I have REALLY covered ALL my basis now for the appeal/grievance and I can't get over what that doctor last week said about it being the 'standard of care.' So, I am going to try and be hopeful but not get my hopes up too high (we all know how things have happened in the past with that)!

I have faith that my hard work is just about to get paid - big time! I know it's a busy, busy time of the year but keep me in your prayers and thoughts!! :) Pray that 'whoever' now gets it with the State Dept. has an open heart and mind and agrees with the experts on what is the 'right' thing to do - and that is to approve this coverage!

Today's Daily Affirmations:

"Obstacles are those frightful things you see when you take your eyes off your goal." - Henry Ford

LOVE this quote. All my dedicated blog readers all know too well how many obstacles I have come across but I have ALWAYS kept my eye on the goal - getting the right treatment! You might have to fight for it but you can really do anything you put your mind too!

Have a great night!! Only 11 more days until Christmas! YEA! :)

Hugs -

Rachelle

More good news, bad news, good news!

2009-12-12T10:01:00.000-08:00

OK - so on Friday, I went to San Diego Cyberknife and followed up with the consult with a doctor there that my SD neuro-doc referred me to. Sharp denied this referral so I just paid the $$ to go. I wanted to just follow up with his recommendations (I thought this will be good for my appeal) AND I can always get more info from another doctor. As I have said before, sometimes if you have to pay - just do it....the info might be 'gold' to you and it certainly was for me!!!

Good news - This doctor I saw at SD Cyberknife was amazing. Took about 1 1/2 hrs with me to go over my MRI, an exam, his opinion, etc.... He told me that Cyberknife is the 'standard of care' for treatment for 'my' tumor. He said that it's hard for an insurance co. or state to deny you treatment when something is considered the 'standard of care.' He said that they have had like a 90% success rate with appeals and his report today will reflect his opinions. OMG!!!! This is gold to me! He also said he had a clinical study he will give me (that is ONLY on MY type of tumor - I could NOT find one like this for the life of me!). This will also be gold to me! :) I was really excited after I met with him and felt really comfortable him too.

Bad news - The doctor at Cyberknife mentioned that although 7% seems like a 'small' increase, it isn't for 'my' type of tumor. They typically 'hardly' grow at all so 7% in 5 months, in his opinion, is still a lot. So, he said treatment should still start asap. He also described to me in length about my tumor (which runs along my 7th intracranial nerve) and that my 'facial' nerve is like the diameter of a single hair - WOW?! That is really small. That's why Cyberknife is SO important (for accuracy and precision because of the area 'around' my facial nerve, ie: hearing center, brainstem, temporal lobe). He also said they are doing a study right now that is focusing on 'hearing preservation' - which is exactly what I need. So, it scared me a little knowing some of this and I still need to push for getting this done as soon as I can.

Good news - This doctors report AND the ENT doctor I saw the other day will both reflect the necessity for Cyberknife. This now gives me a total of 6 doctors (out of 8) that recommend this treatment. Also, the cost for Cyberknife in SD is somewhat less than Stanford (instead of buying a 'house', it's more like buying a very expensive car - MUCH more affordable).

So, the light at the end of my tunnel is getting bigger and I was really happy that I made that consult with the SD Cyberknife doc. All in all, it was a GOOD Friday! :) Appeal to the state should be sent off next week (mid-week). Can't wait!!

Today's Daily Affirmation:

"A clear vision, backed by definite plans, gives you a tremendous feeling of confidence and personal power." - Brian Tracey

This is so true....the more info I got, the 'clearer' my vision was of what my plan should be. I am a little afraid to say that I feel very confident in what is to come because you 'never know' but I am feeling pretty good about it. Hard work DOES pay off and I do have to say that all my hard work has somewhat empowered me to feel good about all of this. I am thinking right now that 2010 is going to be a great year!!

Have a great weekend! :)

Rachelle

Good news, bad news and then good news...

2009-12-10T21:03:00.000-08:00

Soooooooooooo, here it goes for today:

Good news - My hearing test showed that my hearing is still 'within normal limits' in my right ear. It still feels 'plugged' but I guess I can still hear fine. Part 2 of this is that the doctor I saw today (the 'first' ENT doctor I saw when I first got my diagnosis) AGREED that Cyberknife is what he would absolutely recommend to treat my condition. So, his report would show another physician supporting my appeal.

Bad news - I talked to my attorney and he received Sharp's response to my appeal. DENIED! No surprise here but I still had a glimmer of 'hope' that they would DO THE RIGHT THING!

Good news - Sharp gave us their response a week early - so, I will be sending off my grievance to the State next week.

In light of 'bad' news - there is always something good. You just have to look at things that way because THAT is what will keep you going. I have talked about finally 'seeing the light at the end of the tunnel' and I truly feel that I am. Things will happen and persistance WILL pay off!!!

Today's Daily Affirmation:

"Each moment spent in prayer is like a coin put into a bank account." - Doreen Virtue

I know MANY of you have prayed for me (including myself) so I am assuming my 'bank account' should be overflowing! :) The power of prayer is a strong thing - NEVER underestimate your abilities with it.

Have a great Friday! :) Tomorrow I am off to Cyberknife San Diego for a consult! Can't wait to hear what they have to say!

Hugs -

Rachelle

Still moving forward...

2009-12-08T19:23:00.000-08:00

Tomorrow I am going to make an appointment with an oncology/radiation doctor at the Cyberknife office in San Diego. He was the physician that my neuro doc referred me to (which Sharp denied that referral too). So, I am following through with what this doctor recommended because it will just be 'another' physician who is supporting this treatment AND I might get more information from him. I always learn something from each doctor I see. Some of you have asked why not get Cyberknife in San Diego vs. Stanford. It doesn't matter if I go here or up at Stanford - it's still considered 'out of network' for either so if I have to pick, I want Stanford! :) Not to say that the physicians here aren't good - I am sure they are but the physicians up at Stanford have seen 'my' condition and have treated it several hundreds of times. That's what I want - especially because it has to do with my head! :)

I had a sweet surprise yesterday. Two of my neighbors, Ward & Kay, brought to me a prayer quilt that was made by the "Prayer Quilt Ministry" - The Church of Rancho Bernardo. It's beautiful with several colors and one side has the quilted squares with tied threads and the other side has a cross. I was very touched by this labor of love. I know quilts are very time consuming to make and each 'knotted thread' was tied by someone who prayed for me. Just writing this is making me cry. It also had a little stitched in label that said, "This quilt was made for 'me' with love, hope and prayers. Each knot represents a prayer that was said for you. December 2009. "Don't worry about anything instead, pray about everything. Tell God what you need, and thank Him for all He has done. - Philipians 4:6. So, this will be the perfect snuggle blanket in this cold weather! :) As another little message said on the quilt, "We hope that you will use this quilt and be 'covered in prayer!' I will! What a beautiful gift to give to someone and I am extremely grateful to you Kay for requesting this and for thinking of me!!!!

Today's Daily Affirmation:

"There are events in my life that cannot be explained or changed. I acknowledge them, feel them, and release the rage, guilt, loss, anger and grief. This process takes time and attention, and it heals my body and my life." - Dr. Christiane Northrup

So, so true.......I feel my body 'healing' each day. It's such a slow process but well worth the journey.

HUGS & G'NIGHT! :)

Rachelle

Patience is a virtue...

2009-12-06T20:34:00.001-08:00

Had a great weekend with my family. It was pretty busy...

Fun night with the girls on Friday, hanging out with the babies on Saturday and Sunday Austin and I went to his Montessori for their annual "Gingerbread House" making day! :) Man, I thought I was prepared but when I got there, I realized how 'amateur' our little house was compared to everyone else' (it was our first year doing this). People were making cars, chimneys, santas, etc.. ALL out of candy! Sorry Austin - your mom kind of sucked at this! :( Next year I am looking online 'how to make a gingerbread house' and I am going to be the bomb! Oh wait, this isn't about 'me', it's about Austin making it!! :) Anyway, it was really a lot of fun and a blast for the kids.

After that, we headed to the beach for a family picture. We were supposed to do this a few months back but things have just been crazy so we finally did it. Camryn's one year pix are all done now. It makes me sad how big she is..... I gave her her last 'bottle' a few weeks back (she was pretty much off all bottles for awhile except her night one...that's the hardest to give up!) :( Anyway, I totally cried after I gave it to her. Probably because that's kind of the last 'newborn' thing you stop giving and I know I won't have anymore kids (the doctor's don't recommend me getting pregnant again b/c of my tumor). I am over it now but I still haven't thrown that bottle out (smile)....

OK - as for this week! Back to the fight with my treatment. The tumor is STILL growing so although I am relieved the tumor didn't grow as much as last time, I am still taking my treatment seriously. I can still lose my hearing anyday, facial function, etc....soooooooo, Sharp has a deadline to respond by the end of next week and we'll take it from there. I have covered ALL my basis (I feel) for my appeal with the state and I still feel that I have a great argument as to why I need Cyberknife and 'why' I need it up at Stanford. This won't drag out for months/years... I will know where things are by the end of Dec/beginning of January. It kills me going into 'another' month but I feel like I am seeing the light at the end of the tunnel. I am so close I can just feel it! Patience is a virtue.

Today's Daily Affirmation:

"Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience." - random 'patience' quote.

Gosh that is the truth - 'when the going is hard and slow' - I know all too well what that feels like.

Hope you all had the BEST weekend ever!

Hugs -

Rachelle :)

MRI Results

2009-12-04T08:38:00.000-08:00

My tumor grew 1mm - about 7%. That's good news and bad news. Good because it didn't grow a ton but bad because it's still growing. My concerns about cancer have lessened but there is still always a chance. I am wondering if the the rapid growth in the beginning might have been related to my pregnancy (hormones) - who knows but this helps buy a little time with my insurance b.s. that I am dealing with. I mean, I am worried about the growth, losing my hearing/facial function but I would be a lot more stressed had it grown another 50%!

GOD IS GOOD!! That is all I have to say about that! :)

Today's Daily Affirmation:

"Keep your dreams alive. Understand to achieve anything requires faith and belief in yourself, vision, hard work and determination, and dedication. Remember all things are possible for those who believe." - Gail Dever

More later!! :)

HUGS and thanks everyone for all your thoughts and prayers!!! It had truly helped me soooooooooooooo much!!!!

Rachelle

Ugh the waiting can be a killer! :(

2009-12-03T21:33:00.000-08:00

I called my doctor's office to call the MRI office to see if they had the results and they didn't. Soooooooooooooooooo............I'll put in another call to 'remind' them (smile) to call again to see if they have the results tomorrow. I would REALLY like them before the weekend. If there is one thing about being diagnosed with an illness, it's the 'not knowing' and 'waiting' for test results that can really be a killer. So, I try and stay focused, positive, have fun with my babies and NOT think about it. I have said this before and it's so true but why fester over 'stuff' when you have NO control over it? IT IS WHAT IT IS and when I get the results, I will then move forward with whatever needs to be done.

When I was driving home from work today, my mind started racing with 'thoughts' - not good ones and it was almost like God was saying, "nu-huh" -and what happened? MY SONG came on the radio ("I gotta feeling" - Black Eyed Peas).......I instantly got in a good 'warrior' mood and got over feeling sorry for myself. I only went there for a short time and I am glad this distracted me because by the time I got home, I was ready to have a good time with my babies! :) God is good.

Today's Daily Affirmation:

"There is much in the world to make us afraid. There is much MORE in our faith to make us unafraid." - Frederick W. Cropp

Have faith, stand strong and believe. I DO, I DO, I DO!!!

Hugs and good-night!!

Rachelle

PS - I have to give a 'shout out' to Nancy...... a dear friend who finished her last round of chemo today! YEA NANCY!!! You rock! xoxo

Done with my MRI!

2009-12-02T20:47:00.001-08:00

Just got home from my MRI. I don't know why but I am exhausted after I get them! I don't know if it's all that 'banging noise', beams going into my head or the contrast dye. It took about 30-40 minutes and then it was over. With all that noise, it's amazing how you can still manage to almost fall asleep!

The gal that did the procedure for me was really nice and I could see the physician in the back room viewing it. I SO wanted to just ask him if he could tell me right then and there but I know he can't. So, I will be calling my doctor tomorrow and Friday to see if she can get 'early' results. I don't want to have to wait until Monday. It's out of my hands (as always) and it is what it is. I am glad I got the referral pushed in on Monday, approved yesterday and an appt. today! WHEW!

No more news with Sharp yet (figures)......

I think I'll be talking to my attorney to start the state grievance process. I have waited long enough. If they don't want to answer then that's fine but I am not waiting anymore.

I was really anxious about my MRI the other day but now I feel at peace again. It'll give me more answers and I will be able to move forward. Whatever the results may be, I will keep plugging away...................I can't stop now???!!!

Today's Daily Affirmation:

Serenity Prayer

"God, grant me the serenity to accept the things I cannot change;

the courage to change the things I can;

and the wisdom to know the difference."

I think I have posted this once before but it's so fitting for 'any' situation. LOVE IT!

Although I am exhausted right now, my faith is feeling strong. God is good and I know things will be just fine.

LOVE TO YOU ALL and when you are having a crappy day, things could ALWAYS be worse!!!

HUGS :)

Rachelle

Really anxious but it has to be done...

2009-12-02T16:17:00.000-08:00

Tonight I am having a follow-up MRI. My hearing feels worse and I think it's time. The doctor's at Stanford had recommended that I get another but it seems like my time with them like it was just yesterday.

So, please say prayers. "I" requested this but "I" am scared to death of the results. I know that I need to know where things are at in order to move forward but it's still scary.

Thanks to everyone for your sweet comments, prayers, emails and thoughts that keep me strong each day.

Today's Daily Affirmation:

"Come unto me, ye who are weary and overburdened, and I will give you rest." - Matthew 11:28

Gosh, I just want a little rest, a little peace and a little confirmation knowing that everything will be o.k....

Wishing good thoughts for good results.

Should hopefully know by Friday..

Hugs -

Rachelle

Only good thoughts for this week...

2009-11-29T21:06:00.000-08:00

Gosh - I am REALLY hoping I get some answers this week. Before I know it, another month will have passed and my goal was to have treatment DONE by the end of the year so that I could ring in the New Year BRAIN TUMOR FREE! :)

It's still possible...........right??????????? YES!!!

Today's Daily Affirmation:

"So long as there is breath in me, that long I will persist. For now I know one of the greatest principles on success; if I persist long enough, I will win." - Og Mandino

NIGHT!! :)

Rachelle

Happy Thanksgiving everyone!!!

2009-11-25T19:27:00.000-08:00

Tomorrow is a day of just rest, being with family and for giving 'thanks.' I have SO MUCH to be thankful for and although my brain tumor isn't the 'ideal' situation (obviously), things still could be a LOT worse. Being a city employee, SEVERAL co-workers got word yesterday that they will be losing their jobs (some even after 25+ years of service to this city)......my prayers go out to them and their families and I hope things work out for everyone.

We will be celebrating Thanksgiving at the Fire Station since Chris has to work tomorrow. Best part - NO COOKING!! The RB Inn caters dinner to the firefighters who have to work on this holiday. They treat their district firefighters well!! :) Thanks RB Inn!!!

Today's Daily Affirmation(s):

An optimist is a person who starts a new diet on Thanksgiving Day. ~Irv Kupcinet

Thanksgiving Day comes, by statute, once a year; to the honest man it comes as frequently as the heart of gratitude will allow. ~Edward Sandford Martin

"Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom." - Marcel Proust

"If the only prayer you said in your whole life was, "thank you," that would suffice." - Meister Eckhart

HAPPY THANKSGIVING TO EVERYONE! :)

Hugs -

Rachelle

I was right!!!

2009-11-23T18:54:00.001-08:00

Well, I was right - all the physicians I need to contact are ALL off this week. Totally sucks because that delays things 'another' week. I am trying not to be discouraged by this but it seems like days have turned into weeks, and weeks, now into months. It's amazing how time goes by so fast. If I don't see any progression in a week or two, I might ask my physician for another MRI. It has been almost 4 months (can you believe that?) since my last MRI and if it grew A LOT in a 7 month span, I might want to know where it's at right now. The reason I was holding off was because before Cyberknife, they do an MRI & CT prior to treatment as to get an exact measurement of the tumor. So, I just don't want to expose myself to more radiation unless necessary. Maybe it will put my mind at ease (if it hasn't grown much) OR it will do the complete opposite.

I'll have to think about this. I am feeling good - other than my ear plugged so maybe I can wait a little longer but I feel like I am playing a little russian roulette with my condition and the time that is passing. Pray that I get some direction as to what to do.

In the meantime, since I can't do ANYTHING until next week - I may as well enjoy this holiday week and try and relax a little. This is all out of my hands so why ponder on so many 'unknowns', right???

Today's Daily Affirmation:

"God places the heaviest burden on those who can carry its weight." - Reggie White

No reason to ask 'why' God chose me to go through this. There are things on my journey that have come full circle and as I said in my first entry on this blog, I don't think I would change a thing. What I have inspired to others (as I have been told) - I have received right back.

I might not write everyday this week.......hang in there with me and have a GREAT THANKSGIVING with your loved ones, friends and/or family!!!

Hugs!

Rachelle

A new week...

2009-11-22T22:15:00.000-08:00

Well, ready for another week and I am trying not to be discouraged because I know A LOT of people take this week off of work. So please pray that I at least get some answers I need to move forward with my situation.

I went and visited Dr. Won today in San Clemente. There is so much to say about this wonderful human being. He is a holistic doctor I saw right after my diagnosis and he has helped me to detox my body and get it really healthy. I did a super strict diet (and when I say 'diet' - it's not a lose weight diet, it's a 'get healthy' diet) for about 8 months. It was one of the hardest things I ever did because I basically had to cut out anything that tasted good!! :) I really believe that had I not done his 'plan,' I certainly wouldn't be doing as well as I am today. His website is posted as 'one of my favorites' on my blog. He has done some pretty miraculous things with some very sick patients and I will forever be grateful to him. We talked about my diet and I am back on a strict diet and his herbs (which I call "liquid gold" but unfortunately taste like a#$!!) :( I keep telling him he would have more patients if his herbs tasted more like chocolate milk! Those of you who I have introduced to Dr. Won and have been on his plan - you know what I am talking about!!!! :) UGH!!!

So, I can suck up nasty herbs for a month. It'll help get my body healthy for radiation treatments and flush out all those nasty toxins quicker. Thank you Dr. Won and Grace (his beautiful sister that works with him) - you rock!!!

Today's Daily Affirmation:

"When you doubt your power, you give power to your doubt." - random strength affirmation

NO doubts! All positive thoughts for this week to come. Thanks to all of you who have posted comments on my blog - you fire me up and keep me moving forward!!!

Hugs!!

Rachelle

Let the games begin...

2009-11-20T19:26:00.001-08:00

Well, we did receive a response - obviously not one I wanted to hear. Next week I need to do some MORE things to try and get this resolved. In the meantime, I just wanted to crawl into a hole and forget this whole thing. BUT - I have come this far and can't let this B.S. stuff get to me. So, I had a pity-party for myself with a neighbor since my hubby is at the FD (thanks Christina!) and few glasses of wine and I am feeling better and ready to move on ( I guess this would be like 'pity-party' #8 or something??) Who's counting anyway and does it matter??!!

I can't go into all the details but as of right now, I basically haven't heard anything that is going my way. It's mentally exhausting, to say the least. And of course, I get this news at around 4:30 - just as everyone I now need to contact is leaving their office for the weekend. How convienant.

So, another weekend will pass and I will be in 'warrior' mode on Monday! AGAIN!

I decided to look up "Don't give up quotes/affirmations." I still have faith and trust that the good Lord will keep me strong during the next few weeks and will protect my hearing.

Today's Daily Affirmations:

"Never give up, for that is just the place and time that the tide will turn." - Harriet Beecher Stowe

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." - St. Francis of Assisi

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all." - Dale Carnegie

"When the world says, "Give up,"

Hope whispers, "Try it one more time." - Author Unknown

And I think this one suits me best!

"Perserverance is the hard work you do after you get tired of doing the hard work you already did." - Newt Gingrich

Now ain't that the f'ing truth...

Hugs -

Rachelle

No news yet...

2009-11-19T21:25:00.000-08:00

Haven't heard anything yet. If Sharp mailed something on our deadline (which was yesterday), I "should" get something by tomorrow.

If not, here comes the weekend and more time of waiting. I think if we don't hear anything, we are going to start the grievance process with the State.

Today's Daily Affirmation:

"You can look at the glass as half-empty or half-full. And the minute you start looking at it as half-full, all the glasses around you start to get fuller. This seems simplistic but it's the way the law of attraction works. Focusing on what's "full" will bring more good things into your life!" - Dr. Christiane Northrup

I can surely hang in there a few more days - this daily affirmation reminds me to keep focusing on what 'is' full in my life!!!

Happy Friday!

Rachelle

One more day...

2009-11-17T21:02:00.000-08:00

No letters, no calls from my attorney today. So......I guess tomorrow will be it!

Obviously I am anxious to see where this goes. I am doing o.k. - much better than last week!!! :)

Today's Daily Affirmation:

"I can do all things through Christ, who strengthens me." - Philipians 4:13

AMEN TO THAT! :)

Hugs and night!

Rachelle

No news is good news??

2009-11-16T19:06:00.000-08:00

I am assuming no news is good news! :) I should hear something by Wednesday (that was the deadline we put) so we shall see!

My friend Holly posted a comment recently and told me I reminded her of Erin Brockovich! I take that as a HUGE compliment!! It empowered me even more! Thanks Holly!!! :)

Today's Daily Affirmation:

"Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength." - Arnold Schwarzenneger

OK - I know this affirmation was from the 'governator' - but I liked it!! :) I WILL NOT SURRENDER!!!

Hugs -

Rachelle

Looking forward to a great week!!!

2009-11-15T21:11:00.000-08:00

This week will be it.... I think I will know whether I am going to get anywhere with Sharp OR take it a step further (Dept. of Managed Healthcare). So, at least this week I will know where things will stand (hopefully!!).

I am feeling good (I keep saying that and I just hope I get some answers)...

Keep praying and sending me all of your comments/thoughts - LOVE THEM! :) They get me through these difficult times. I am blessed to have all of you in my life!!!

Today's Daily Affirmation:

"I expect great things to happen."

"I believe that my wishes will be fulfilled."

"I am surrounded by positive, healthy, loving people."

"Hope will always be my closest companion."

"The light at the end of my tunnel is my new beginning."

"Beautiful things are to come."

"Fundamentally all is well."

- Random 'hope' affirmations.

All IS well... Have a safe and great week!! :)

Hugs -

Rachelle

And another week passes...

2009-11-13T21:33:00.000-08:00

This sucks, this sucks, this sucks....what else can I say?

There is a little 'back and forth' going on right now with Sharp but luckily my attorney is on top of things like white on rice and I should really know which way things will go next week. Seriously, I don't know what I would do if I didn't have an attorney right now (actually, I do...I'd be three sheets to the wind in a panic!).. :( So, I am grateful that our paths crossed and for his help!!!

I am doing o.k. - though I had a little meltdown the other day but once I got it out, I am right back on board! The waiting is just MUCH harder now than ever. I have come this far and can't back down - at all! I think having 'moments' here and there are me just being human. We can absolutely be strong but it can certainly be very hard at times.

My hearing in my right ear is feeling worse and that makes me nervous so I am trying not to think about it.

Today's Daily Affirmation:

My Destiny is Mine to Control.

"When you acquire enough inner peace to feel really positive about youself, it's almost impossible for you to be controlled and manipulated by anybody else." - Wayne Dyer

I also LOVE this one....I have posted it before but need to again:

'I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to there" and it will move. Nothing is impossible to you.'- Matthew 17:20.

I have faith and I won't let this get the best of me. I am almost there, I can feel it.

Have a great weekend!!!

Hugs -

Rachelle

Little bump in the road but still plugging away...

2009-11-11T18:43:00.000-08:00

I received a letter from Sharp that they received my appeal and they are reviewing it. A little bump in the road, some language in the letter I am not too familiar with so my attorney is handling it (what would I do without him??!!). I am grateful for all his help!!!!

My friend Nancy sent this yesterday. She is an inspiration to me and is currently fighting breast cancer (you rock lady and looked amazing yesterday!!!!).

I LOVED this - especially the saying, "I can bend to any wind and remain unbroken!" Thanks so much Nanc - hugs!!

Night :)

Rachelle

Today's Daily Affirmation:

Bend, Don’t Break, with the Wind

11/3/09 at 06:30 am | 15 Comments

BY DR. WAYNE W. DYER

Having lived by the ocean for many years, I’ve observed the strength and beauty of the tall palm trees that grow at the water’s edge. These stately giants are able to withstand the hurricane-force winds that uproot and destroy many larger, older, and more majestic trees. What is the palm trees’ secret to staying in one piece through huge, devastating storms? They bend almost down to the ground at times, and it’s that ability that allows them to survive. The Tao invites us, too, to be resilient, elastic, and pliant when we face the powerful winds that are part of life. When destructive energy comes along, allow yourself to resist brokenness by bending. Look for times when you can make the choice to weather a storm by allowing it to blow through without resistance. How does this work? Be willing to adapt to whatever may come your way by initially allowing yourself to experience that potentially destructive energy, much like the bending tree in the hurricane. When criticism comes, listen. When powerful forces push you in any direction, bow rather than fight, lean rather than break, and allow yourself to be free from a rigid set of rules—in doing so, you’ll be preserved and unbroken. Keep an inner vision of the wind symbolizing difficult situations as you affirm: I have no rigidity within me. I can bend to any wind and remain unbroken. I will use the strength of the wind to make me even stronger and better preserved.

Namaste,

Wayne

And the anxiety kicks in.... :(

2009-11-09T09:38:00.000-08:00

UGH!!! It's only been what, 3 days, and my stomach is churning this morning! :(

I know 'someone' is or has read it and it's in their hands as to what 'they' are going to do... I was pretty distracted all weekend so I didn't think about it much but today it's a different story. I think because it's "Monday" and I KNOW someone will have received it and is thinking, "DENIED" or "Hmmm, maybe we shouldn't mess with this lady!" - of course I am hoping it's the "DON'T MESS WITH ME!!" :)

Good thoughts, good thoughts, good thoughts!!!

Today's Daily Affirmation:

"I am responsible for the Day I Create for Myself - The choice is up to you. It can either by "Good morning, God!" or "Good God - morning!"

I just wrote my blog and then "JUST" saw this daily affirmation online. How ironic I came across this? So........I chose to believe and have faith - NO more stomach churning and no doubts!!! Things will be just fine.

Have a great Monday! :)

Rachelle

And the waiting begins...

2009-11-07T18:43:00.000-08:00

I talked to my attorney yesterday and he sent my appeal with his cover letter to Sharp (over-night mail). He said they should receive it today and we should hear something by mid-next week. I don't know if 'people' are working in that office over the weekend but regardless, I should still hear something next week.

OK - I feel relaxed but a little anxious at the same time. I am NOT trying to think of all the 'what if's' - waste of mental energy, right??!! So, I won't even go there!!

Today was a great day with some ol' friends who are in town. Austin spent all morning w/Aunt Juanita and cousins Harrison and James at the "Thomas the Train" REAL train ride up in the Temecula area (like HEAVEN for him!!) :) . Both babies are in bed now and I am just going to relax! Tomorrow it's b-day party for my god-daughter Sabrina and then BBQ at our house w/our friends that are in town.

This is the FIRST, most 'relaxing' weekend I have had in a LONG time. Let's hope things continue to stay at this pace. PRAYERS, PRAYERS, PRAYERS!!!!! :) :) Thanks so much to EVERYONE for all your love, support, thoughts, positive energy and prayers!!! I appreciate it so much!!

Today's Daily Affirmation:

"I know I am worth healing." - Louis Hay

Wow - what a short, simple, powerful statement. Good things are coming, I can feel it.

Night and have a GREAT weekend!!

Rachelle

Tomorrow is it!!!

2009-11-05T20:51:00.000-08:00

Tomorrow my attorney will send off my appeal with his cover letter.

I think it looks good as a package and I am pleased with the outcome.

Did I tell you that the attorney is doing his initial work pro-bono (aka: FREE!)??!!!

He is such a NICE man and I don't know why he picked 'my case' to do pro-bono but I am extremely GRATEFUL to him for his expertise and help! We should hear something sometime next week. Soooooooooooooooo, FINGERS CROSSED!!! I am going to enjoy the weekend and NOT think about this at all! It's not in my hands anymore and I really have done ALL that I could possibly do for this.

Today's Daily Affirmation:

"You have to learn the rules of the game. And then you have to play better than anyone else." - Albert Einstein

I have learned SO MUCH about this whole process. Insurance plans, policies, referrals, in and out of network stuff, my diagnosis, experts opinions, traditional vs. Cyberknife radiology - A LOT! I have learned the rules of my game..............only time will tell what cards will be dealt next.

"I gotta feeling........" - that next week will be better than this one! :)

NIGHT!

Rachelle

Ahhhhhhh.....

2009-11-03T21:13:00.001-08:00

I actually felt just a sigh of 'relief' today. No phone calls, follow-ups, etc.... I have been 'go, go, go' for so long it seems and it was nice today where I just had a day with a little bit of a 'load' off of me.

And now the waiting begins and it's going to be hard but today I just felt a sense of 'peace' over me. That everything was going to be o.k.. It's weird but I have had these visualizations of me up at Stanford for treatment. I don't know what they mean but this sense of calmness I think is trying to tell me something.

Today's Daily Affirmation:

"Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what passed and you will ask yourself..."How did I get through all of that?" - random hope affirmation

I am waiting for that 'laugh' - (smile)...

Night!!

Trust, believe and have faith...

2009-11-02T21:15:00.000-08:00

I gave my appeal to my attorney today. I know it's ready and I know it's good. I have done my homework on this one and I hope that 'whoever' gets it at Sharp sees that and sees my argument as to 'why' I need that treatment.

It's scary and again, the waiting is going to be the hard part. The attorney said he should have it turned in by the end of the week. So, I should hear something next week sometime (since I asked for an Expedited 72 hr response).

PRAY, PRAY, PRAY!!! It's out of my hands now and I put my heart and soul into it so I have to believe that it will pay off.

Today's Daily Affirmation:

"My job is to take care of the possible and trust God with the impossible." - random belief affirmation

I have done what 'is' possible - fighting for what I believe is the right thing, not giving up and exhausting all possible avenues of attack. I was feeling pretty tired today and just want this to be done. Now it's time to give it to God and to NOT WORRY! Through Him, ALL things are possible!!!

Night :)

Rachelle

This is it!!!

2009-11-01T20:45:00.000-08:00

Tomorrow I meet with the attorney and then he will do a cover letter with my appeal and send it in. I am SO glad to be to this point but like I said a few days ago, it makes me very nervous too. The 'waiting' this week is going to be a killer so send me some positive thoughts, emails, affirmations, prayers - anything!!! I appreciate all of them! :)

Since I am requesting a 'speedy' grievance, I am hoping to find out by next week (at the lastest) so we'll see!

Today's Daily Affirmation:

"I truly believe that we are here to bless and prosper each other. I reflect this belief in my daily interactions." - Louis Hay

This is sooooo true. As much as you have learned from me, I have learned much more through you. I am feeling quite blessed!!!

Night and hugs!

Rachelle

Happy Halloween!!!

2009-10-31T22:45:00.000-07:00

It was a fun day! First of all - I cleaned out our garage (oh my gosh - when you add another child to the family it seems that 'things' will accumulate very fast!!)......

So, a trip to the dump, Goodwill and taking things to 'families' homes made the day quite productive!

Then, we all got ready for Halloween. Chris was working today so he got to change districts with another engine so that he could see the babies all dressed up! :) They looked so cute and I thought that 'this' year would be the first year I could FINALLY trick or treat with Austin but NO!! The first kid to walk up to our porch had the 'SCREAM' mask on and after that, it was over. Austin had the 'death' grip on me and didn't want to go anywhere! Don't blame the kid, that mask freaks me out too! :( Poor guy, he was so scared.......

I really had to get his mind off of it before he went to bed so he wouldn't be scared all night! Oh well, maybe next year!! :)

I posted some pictures of the kids and all of us. It was ANOTHER beautiful day in sunny San Diego! Hope you all had a safe Halloween!

Today's Daily Affirmation:

"I am grateful for all the things I have in my life, without them I wouldn't be where I am today." - random Grateful affirmation

So, so true...

Have a great Sunday!!!

Rachelle

A few more days! :(

2009-10-30T21:36:00.000-07:00

I didn't meet with the attorney today. I was waiting for some information from one doctors office (I needed the number for the recent referral to Cyberknife) and I called the 'lady' at the office 4 times this week and she wouldn't call me back. So, I called the attorney to reschedule for this afternoon and he was busy so we are meeting Monday morning!! :( That's o.k. - a few days to just make sure it's 'perfect' - it already is but I got the neurosurgeon's report yesterday in the mail and he had written in it that 'they' (meaning the Head/Skull Tumor Board for radiation - or something) reviewed my scans and 'all' (like 6 different types of neurologists, otolaryngologists, radiation, oncologist)the physicians on this tumor board were on the same consensus that Cyberknife is the 'best' treatment for my condition. I LIKED THAT!! I didn't know he did that so I thought that was great - of course I added that to my appeal.

So, there IS a reason why that 'lady' didn't call me back! I apologized to her for calling her each day (she seemed quite annoyed) but I tried telling her how 'important' this information was to my appeal......she still seemed annoyed but until you are going through what "I" am going through, my emergency seems to be nobody else's but mine! But, I kept on her and got what I needed - and that's all that matters in the end, right???? BTW - the Cyberknife referral that he just put in (for San Diego) was denied too - no surprise there but it's on paper that he referred me and I just needed that.

So, until Monday, I am looking forward to a FUN Halloween weekend with my babies!! Camryn is going to be a cute little Koala and Austin - Thomas the Train! We'll see if he actually lets me put it on (he was screaming at the store when I attempted to do it there!!)..........ahhhh, the joys of these fun times!

Today's Daily Affirmation:

"I control the width and depth of my life. I am behind the wheel and I can make my life what I want. I am specific about what I want. I spell it out. I commit to it and I do the footwork to make it happen. "

Oh my gosh? It's like it was written for me!

Have a fun and safe weekend!! :)

Rachelle

Almost there...

2009-10-29T21:11:00.000-07:00

I meet with the attorney at 10:00 tomorrow. I will be giving him my appeal and he will do his thing and off it goes! :) I am glad that I am finally to 'this point' but also freaked out. You really only have one chance to appeal so if they deny it............

I guess I shouldn't even THINK that, huh??!! It's GOING to get approved!!!

I need to stay positive, help me here. It just can be reallllllllllyyyyyyyy hard sometimes! :(

Today's Daily Affirmation:

"I remove doubt by suspending disbelief and sustaining belief." - random Trust affirmation

No doubts, no doubts, no doubts - "I gotta feeling........................." (my song! play it over and over again!) Things will work out. I am standing strong and will move this mountain!

God bless all of you!! :)

Hugs -

Rachelle

I can see the light at the end of the tunnel!!!

2009-10-28T21:01:00.001-07:00

OK - Appeal is just about done and I meet with the attorney on Friday to turn it all in.

Sooooooooo, I asked for a 'speedy' grievance -which means they have to respond within 72 hours. That means LOTS of prayers and good thoughts all of next week! It looks good - it's not too long but to the point. And then I am attaching the six or so clinical studies that Ms. Catherine (from Cyberknife) emailed me! She DID follow through and gave me a LOT of information!! I am so grateful to her!

I am also grateful to RONN!!! YOU ROCK!!! Ronn is part of my family..... AND he is a healthcare administrator who appeals to insurances a lot for payment. So, he helped me out - BIG TIME!! I am indebted to you Ronn - thanks so much for taking time out of your day to help me. :)

I am feeling that things are finally coming to an end - hopefully for good. This hard work has got to pay off - I am feeling good about it all and I am feeling strong with all of you by my side.

Today's Daily Affirmation:

"The most important thing is to not stop questioning." - Albert Einstein

I think this is one of my biggest strengths...........and I hope it will pay off.

HUGS to you all!! :)

Rachelle

Great contact today!!!

2009-10-26T21:13:00.000-07:00

Today I just called the "Cyberknife" office itself. I am unfortunately not getting much help from the physicians up at Stanford. It's hard to go through like 2-3 different people to actually get what 'I' need from the doctor. There just seems to be a communication breakdown somewhere.

So, I called the source itself. A lady answered and I explained to her a little of my situation and she said immediately, "Oh, you need to speak to Catherine." So, I was transferred to Ms. Catherine, told her my situation and she started telling me ALL the things I needed to hear! She was TRULY a bright spot in my day!!! I feel like I hit the lottery after talking to her - seriously.

She was telling me stuff to put in my appeal, she asked to get Sharp's policy plan so that she could see what it said, she said she was going to do some research for me for any clinical studies or data that could help make my appeal stronger, etc......

Oh my gosh??!! Are you kidding me? I needed to talk to her like weeks ago and I don't know why I didn't contact them earlier but I really thought I would get info from the doctors offices. Note to self: Go to the source directly next time!!! Makes sense now, they have to have sales reps, etc....who try to convince people to get Cyberknife over the other types of radiation machines and that is exactly the info I need! We must have talked for like 45 minutes and she shared with me some stories of other patients who have had hard times. She also stated that there is an office in San Diego and the physician there has done like over 300 intracranial Cyberknife treatments - that's good to know. Some people might not understand but whether I go to San Diego's office or Stanford, it costs the same because it's 'out of network' for Sharp. Of course, I would have to pay for travel to Stanford but if I do get it approved, wouldn't you want the 'best' working on your head/brain?? Like I said before, if I had a 'common' tumor, it wouldn't matter but when you are dealing with mine (which consists of 1% of all brain tumors), it makes you want to be a little pickier in who is treating you (and rightfully so).

I just felt SO MUCH better after talking to her. Now, if you have read all my postings, you know that I have felt like this with others - and they didn't pan out. So, keep your fingers crossed. I really do think she will be able to help me. YEA!

Today's Daily Affirmation:

"All is well, and you will never get it done. Life is supposed to be fun. No one is taking score of any kind, and if you will stop taking score so much, you will feel a whole lot better --and as you feel a whole lot better, more of the things that you want right now will flow to you. You will never be in a place where all of the things that you are wanting will be satisfied right now, or then you could be complete--and you never can be. This incomplete place that you stand is the best place that you could be. You are right on track, right on schedule. Everything is unfolding perfectly. All is really well. Have fun. Have fun. Have fun!" - Abraham (of Abraham and Hicks)

I had to read this over like three times but I get it. It completely makes sense to me. I am on track and on schedule. It might not be in the time frame I want it to be but for some reason this is the way it has to be - and I accept that.

Have a GREAT Tuesday!!!

Hugs -

Rachelle

Laughter is the best medicine...

2009-10-25T19:51:00.001-07:00

Hi everyone!

Sorry I haven't written in a few days but it has been a jam-packed weeekend!!

First off - me, the kids, my mom and Chris' parents all went to La Jolla shores on Friday to welcome Chris back from his 620 mile bike ride from San Francisco to San Diego. The Challenged Athletes Foundation (CAF) Qualcomm Million Dollar Challenge was finally at it's last day. It was really nice at the beach and the whole group rode in together. It was awesome and inspiring to see all of them cross that finish line! What a huge accomplishment - especially to those who did this amazing journey on a hand-cycle, with one leg/arm, etc... There was even a tandem bike who had a blind person sitting in the back and the front rider was their eyes for the journey. I am humbled, once again, by those who have had some difficult challenges in their life and have prevailed by not letting their situation stop them from living life to its fullest! Chris finished this race, 2 years and 4 months, from his near-fatal accident. I think if anyone ever doubted his ability to get back 100%, he just proved that it's possible. I am VERY proud of him and all those that rode with him as a team. CAF ROCKS!!!

Other than that, Friday was more phone calls and then working more on my appeal. I am planning on meeting with the attorney mid-week, giving him my appeal and then sending it off! I should know an answer in the next 1-2 weeks if Sharp will cover or deny my treatment. Start sending me some good energy and prayers (I know a lot of you do every day and I am GRATEFUL!!!!)

Now - as for "Laughter is the best medicine".......

This weekend was my 20th High School Reunion. GO EAGLES!! I was a 1989 graduate of San Pasqual High School in Escondido. If there is one thing I can say about the class I graduated with, it's one thing - we were quite a unique group. A lot of my friends I practically grew up with - kindergarten through our senior year. I have kept in touch with some of my really close friends but things like Facebook has really taken 'keeping in touch' to a whole new level. LOVE FB!!

Our class had a LOT of fun people. A lot of teachers hated us and some just 'got' us. We were quite a rowdy group but one thing was for sure - we had a blast.

So, Friday night was kind of the 'ice-breaker' party at my friend Andre's house. He hosted it at his parent's house (one I partied at many-a-time!). :) It was fun and I laughed quite a bit talking and catching up with some people. The night was surreal in some ways - it just brought you back to that 'time' and reminded me of so many fun times with a lot of cool people!

Saturday night was the more 'formal' event at the DoubleTree downtown (nice place) and that was fun too! Dancing, seeing a lot more faces and coming to the reality that I have been out of high school for 20 YEARS!! No way???!!! Boy does time fly...

I really needed this fun time - to forget about 'that darn thing in my head' and to just relax a little. Me, Kim, Cindy and Blair ( aka: The 4 BB's - Bad Brunettes - yes, totally dorky but we were in high school!!) all roomed together Saturday night and we had some good laughs - I LOVE YOU ladies!!! :) I also had several people come up to me and just wish me well, give me a big hug and/or tell me that I was in their prayers. I know I have said this before but it really, truly humbles me when I am overcome by such kindness. Thanks so much to all of you out there who are helping me through this and I really mean this when I say that I can 'feel' all your love and support around me!! THANK YOU! :)

So the weekend came and went - another 10 years have come and gone and we'll all do it again in 2019! Sunday was relaxing (ok - not much sleep and some drinking do not go well w/this lady anymore! I feel old!!) :( Chris and I took the babies to the beach and just hung out. If you were in San Diego on Sunday, you would know that the weather was just absolutely BEAUTIFUL!! I love this town!! Back to healthy eating and focusing on my mission! :)

Today's Daily Affirmation:

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to there" and it will move. Nothing will be impossible to you." - Matthew 17:20.

"I gotta feeling........" (you know, my theme song) :) - mountains will be moving in the next few weeks. Stay strong with me and my victory will also be yours.

Hugs and good-night!

Rachelle

YEA!!!

2009-10-20T22:09:00.001-07:00

My rib dislodged last night and I was in SO much pain most of the night (this has been a chronic problem for about 8 months now). Any of you who have had this knows it feels like you are having the BIG ONE (heart attack) - it literally feels like an elephant is sitting on your chest! And then for some reason around 2:00am I totally puked my guts out?? WTF??!! OK - puking with a dislodged rib is REALLY painful!! Brain tumor, rib problem and then puking...............enough now!!

Luckily, I woke up totally feeling fine (still don't know why I puked!) and my rib finally released and popped back in so I woke up good to go - other than being tired........

I have business to do today so I need to be on my "A" game! :)

Went to visit the neurosurgeon today (the one who originally 'told me' to go get a consult up at Stanford and that CYBERKNIFE is what he would recommend). So, I showed up early and as I walked in he saw me and I saw him and I thought, "Hmmm...he must be thinking I am the wack-nut faxing him all these hysteric requests!" So, I took a deep breath, went into the room and sat down and waited. I was totally getting all tense and ready for my 'defense' tactic but then I thought, I just have to be me. I have to show him that I am one of his patients who needs his help.

He walked in, greeted me and basically I said, " I am here because I need your help." I told him about Stanford (that both doctors agreed with him) and that I want to get Cyberknife done and I need his help to get me there. He said he was really surprised to get the reports from Stanford not even a week from our last appt. (obviously he doesn't know who they are messing with)!! He was very kind and appeared to by sympathetic to my situation. From that visit I got a referral to a Cyberknife office in San Diego and just him re-iterating again that that IS the best treatment for my condition. YAHOO!! TWO FOR TWO!! Of course, the Cyberknife referral will get denied but hey - now I will have THREE doctors stating (in reports) that this really is the BEST treatment for me. My appeal just got stronger.

I was on like cloud 9 leaving his office. I am not giving up!!! Thanks for the extra prayers today!!! God is good!!! "For with God nothing will be impossible." (Luke 1:37).

Today's Daily Affirmation (one of my favorite from the bible):

I can do everything through Him who gives me strength." - Phillippians 4:13

And I will.

HUGS! :)

Rachelle

Bear with me! :)

2009-10-20T08:54:00.000-07:00

OK - I keep changing my 'blog' title picture. Trying to find the right one that shows the text in the background!! All these pictures I took in Maui - my absolute favorite place on this earth. No stress, relaxing and not a care in the world!!!

Lots of prayers today (please!!) :) - see last posting if you haven't yet!!

HUGS! :)

Rachelle

Need LOTS of prayers tomorrow!!!

2009-10-19T21:41:00.000-07:00

Hey everyone!! First of all - my Fundraiser was a BIG success (Peter and Kim - you guys rock!!!!) I don't know how they pulled it off in such a short time but they had awesome auction gifts, great food, drinks, Bali-Hai room w/dowtown view (awesome!) and I think around 60-70 people that showed up! Kim told me today that she believes we raised around $8K!!!! CAN YOU BELIEVE THAT??!! This will definitely help with future medical costs, out of pocket expenses already paid, trips to Stanford, etc...!!! I am still in awe and couldn't believe it.......thanks to EVERYONE who was a part of it, was there in spirit, donated items, etc..... I have received some amazing things from family, friends, co-workers and people I have NEVER met and it really has touched my heart in more ways than you will ever know. I am completely humbled and grateful! Kim and Peter and to all those that helped them - THANK YOU, THANK YOU, THANK YOU!!! XOXO

OK - I need LOTS of prayers for tomorrow. At 1:30, I am meeting with the neurosurgeon (contracted through Sharp) who originally told me that he would recommend Cyberknife and getting an opinion at Stanford. Soooooooo, since I cannot get a hold of him through his secretary and she doesn't quite understand 'my' urgency, I am going to see him! I REALLY do think he holds a big 'key' to my puzzle. Because if 'he' refers me for Cyberknife, it will be much stronger for my appeal (even if Sharp denies it). Because if it is denied, it just shows that 'my' primary recommended me going to Stanford, this doctor supports the treatment, etc...

If you ever are going to win an appeal, your doctors need to be on board with you (from what I have heard/learned). So PLEASE send good vibes, positive energy and prayers my way around that time!! Pray for the doctor, pray that I say the right things and 'stay calm' (ok - that is getting harder to do these days!) and that things go my way - yes , my way dang it!! I think it's time I hear some good news?? HUH??!!!!

I will also be working a little more on my appeal. STILL waiting for any literature from Stanford (again, the waiting is a killer). Note to self: "Must make phone calls to the same people again tomorrow!! They must really be loving "Rachelle from San Diego!!" :)

My hubby has survived his first 3 days on his ride! YEA!! There have been a few accidents so some extra prayers for him and his fellow riders!! Today, Team Slipstream Garmin had 4 riders riding along their route today (and then I think they had dinner with them this evening)....cool! :)

Today's Daily Affirmation:

"I have the strength and determination to get me to the place that I desire to be." - random 'strength affirmation'

And that place is STANFORD!! Here I come!! :)

HUGS TO EVERYONE!

Rachelle

PS - There are several of you that have emailed me - I will try and get back to you tomorrow (sorry, busy day!) :( I also need some comments posted on my blog! Send me your thoughts, prayers, wishes, etc.......it MAKES ME STRONG! :) Thanks!!

Another journey in the family...

2009-10-17T20:45:00.000-07:00

Sorry I didn't blog yesterday....a little busy and last night I hung out with some neighbors and we ended up chatting away and drinking some vino until late at night (too late in fact.....can't do that anymore when I have babies that wake up around 6:00 in the morning!!) Chris isn't here to help me out so I was dying this morning!! :(

Speaking of Chris my hubby.......today was the first day (of seven) that he started the Qualcomm Million Dollar Challenge with the Challenged Athletes Foundation (CAF).

He is embarking on a journey himself. One that will show others that there is triumph over tragedy. The Qualcomm Million Dollar Challenge is an unforgettable seven-day, 620-mile journey down the California coastline from San Francisco to San Diego. The money raised from this race will help towards the payment of handcycles, racing chairs, sports chairs and sports prosthetics for challenged athletes, as well as helping to subsidize for competitions and training expenses. It's an awesome foundation.

In case you didn't know, my husband suffered a near-fatal head injury, a little over 2 years ago on June 30, 2007 - when Austin was just 9 weeks old. I will never forget that day........ Chris was playing on a co-ed indoor/soccer team and it was just 'another' game. I was home with our newborn and received a call that I thought would change my life forever.

My dear friend Rian (who played on the team with Chris) called and said that something terrible had happened. That Chris was playing, fell and hit the wall with his head and was being taken to Palomar Trauma Center. Well, it doesn't help that when you were a paramedic and she was describing some of the symptoms he displayed that in that moment I felt like someone punched me in the stomach. I remember calling my neighbor - screaming and crying - and asking that they come watch Austin so that I could get to the hospital. She came over right away (love you Tania!) and off I went. Thank God for my other neighbor Christina - who calmed me down so that I could actually 'make it' to the hospital (ok - my neighbors are AWESOME!!). :) Looking back, I should NOT have driven myself there but I made it safely. So, when I got to the ER, and saw my husband laying on the trauma bed with blood pouring out of his ear, I just about died. When the Trauma doctor started saying he sustained a 'coup - contra- coup' head injury with bruising on the brain - I knew it wasn't good. So, as I lost it and started bawling he walked over and said, "Don't worry - your husband will be fine." And from then on, it was about 6 months - 1 year of recovery.

Chris doesn't remember what happened (still to this day) and he doesn't really remember the first month after his accident. The doctors said that the reason why he made it through that accident was because he was in SUCH good shape. He had JUST finished running the last 3 academies at the Fire Department and was, really, in the best shape since I had first met him. Had he not been in such good condition, the outcome could have been very, very different.

So, about 7 months ago, I got an email about the Qualcomm Million Dollar Challenge. Chris was trying out different sports because the doctors told him that he really couldn't do 'contact' type sports again - if he got another blow to his head, the 'next time' could be fatal. He had been doing spin classes at the gym to get back in shape and so I mentioned this ride to him. And he looked it over and signed right up. Granted, he had never ridden a bike maybe more than like 25 miles before this but I will tell you one thing.....just a few weeks ago, Floyd Landis (Tour De France winner 3 years ago - but yes, got it stripped for doping) rode with them on one of their training rides and Chris was with him the whole time. Most of you that know Chris know that he is a VERY talented athlete. So, to see him get to this 'pace' in just a short time is pretty cool.

I am glad he did this - it's been quite a journey for him to get to where he is and I couldn't be prouder. Many doubted him even going back to work and within a year of his accident, he took the Captain's test and finished in the top 5 out of about 80 applicants. DAMN! He was born to be a firefighter and obviously this accident wasn't going to stop him from continuing to pursue his goals in the fire service.

Today he finished his first day - San Francisco to Santa Cruz (86 miles) and tomorrow it's from Santa Cruz to Big Sur. He told me how inspired 'he' is by athletes that are riding next to him using handcycles and with prosthetics. Can you imagine doing a handcycle from SF to SD? That's just amazing!! I am proud of you Chris and so are your babies!! YOU ROCK!! :)

As far as tumor news - phone calls, phone calls, phone calls on Friday. Followed up again with a couple different doctors. This one doctor in San Diego hasn't called me back and his secretary doesn't quite understand 'what' I am asking him to do. So, what do you do when this happens?? Make an appointment to meet him face to face! That's what I did!! So, I am sure I will get more answers when I see him next Tuesday! :) Where there's a will, there's a way - right??

Have a great weekend!! Tomorrow is my fund-raiser (still feel weird about that whole thing) and I am in AWE of what Kim and her hubby have gotten in just a few weeks (for silent auction items) - you both are the bomb!!! Go to www.rachellebabler.com to check out the items - it's fricking amazing!!!!! Thanks to everyone that has helped out, donated an item or have made donations and last but not least, for the daily prayers and positive energy. I am making it through this because of you!

Today's Daily Affirmation:

"The exceptional patient is the person who, despite their diagnosis, takes charge of their health and decides to be responsible to their illness or their condition and not necessarily feel responsible for it. One stance is drenched in blame and the other is full of power." - Dr. Christiane Northrup

I am definitely feeling empowered - everyday!

Night :)

Rachelle

A bright spot in my day! :)

2009-10-15T21:57:00.000-07:00

Babies are better, I am getting more sleep and feeling stronger each day! :)

Today, I got a call from the attorney I consulted with. He looked over all of my information and said that he would represent me. I am excited to work with him - he is a very nice man. Can't get into too many details yet about this but his conversation, we'll say, was a BRIGHT spot in my day!!! :)

Of course, I followed that up with my 'usual' phone calls to the 'same' people up at Stanford AND here in San Diego. I did get the estimate for treatment at Sharp ( I knew it would be substantially less but that's because it's in 'in-service' type treatment). But that's o.k. - it's STILL a lot. I also talked to Stanford about sending me some info and then I called the Cyberknife guru doctor himself to send me whatever info he might have. You have to keep following up with all these people to get what YOU want. They are going to be so glad to one day never hear from "Rachelle from San Diego" (that is what I say whenever I call them!) :)

So, more progress. If you keep insisting for answers, you WILL get them!

Today's Daily Affirmation (Lord knows I have said this MANY times in my life):

"God, grant me the serenity to accept the things I cannot change;

the courage to change the things I can;

and the wisdom to know the difference."

AMEN!!!!

Night -

Rachelle

Candy anyone???

2009-10-13T21:32:00.000-07:00

First off, I have to warn you if you haven't already done this. DO NOT buy Halloween candy until like the day before! I went to Costco to get my 'usual' necessities, saw the huge bags of Halloween candy and thought, "Hmm, I better get some now because I will forget to later" - BIG mistake. I am looking at that BIG bag and it has suddenly dwindled down....

Why?? Well, I opened it up the other day because what happens when we feel crappy?We eat or drink something to instantly make us feel better!! Well, the Milky Ways in that bag were calling my name and I thought that I would just tear off a little corner of the bag and have ONE. NOT!! Then Chris noticed it was open and now I am finding candy wrappers throughout the house. So, tonight I stapled, taped it shut and put it out of site. Out of site, out of mind, right??? I have been SO GOOD with my eating (really) - for 6-8 months when I went on Dr. Won's detox, I didn't eat any sugar, caffeine, dairy, alcohol - just to name a few things. So, I got used to it. But it's funny how if you have ONE piece of chocolate, those cravings come back instantly!

Just shows how weak I am in that department!! :) But I quickly reminded myself that I have to stick to my 'health' diet and that I need to prepare myself for radiation treatments. The healthier you are going through treatments like that, I believe the better your body will tolerate and shake off the side affects. So, I am back on track! :)

Now onto my tumor topic!

Got a call today from "Jennifer" with the Oncology/Radialogy department - YEA! She told me that she sent an email to the radiology/oncology physician to get me ANY info on their treatment vs. what Sharp suggested (plus, the difference in machines). I told her to not hate me because I will be bugging her about information and stuff and she said, "Don't worry, just remember you aren't in this alone." I thought that was so sweet and it made me feel good. For some reason today I felt REALLY strong - like some warrior who is going to fight this to the end - and win! I think my sense of strength seriously comes from all the prayers and good energy being sent my way. I have gotten emails from people I don't even know and they have been so inspiring to me! I am also getting emails from friends on suggestions regarding my insurance, treatment, etc... KEEP EM' COMING! :) Thanks for thinking of me - I really do appreciate it!

I also got my first bill from Stanford - ouch...........

I only have to pay for 'half' right now because the other half is 'pending' with my insurance but I am pretty sure I thought it was denied (and I STILL haven't gotten anything in the mail - just from my doctor).

In case you are wondering, or if you ever have to get a 2nd or 3rd opinion, here is what I came across:

- Physician consult in San Diego (for 2nd and 3rd opinions) - ranged from $200-$400 for an appointment.

-Physician consult at Stanford - $800 for an appointment - PER DOCTOR.

I am NOT complaining. If you want answers, yes, you might have to pay for them but I am SO glad I have gotten several different opinions - especially with my rare tumor. Some tumors are so common and treated all the time that you may feel comfortable with the first doctor you see. But the first doctor I saw made me want to run away fast. He looked more puzzled than I did when he was looking at my MRI - NOT a good sign!!! Those consults helped me to figure out what treatment is BEST for me. Some insurance companies will also pay for an outside consult (I think depending on what it is). Sharp did pay for my consult to UCSD.

And don't ever feel bad for telling a doctor you are getting a 2nd or 3rd opinion. Most of them welcomed it and after my consults, they were also interested in what the 'others' had to say. When I first got diagnosed, I emailed a doctor up at Stanford and said, "Can you recommend the two best doctors for my condition - in San Diego," and he did and they were the first I saw. One of the doctors (who was a Kaiser doctor), did my consult for free. Of course, I couldn't see him (he can only see Kaiser patients) but I dropped everything off and then he called me and gave me his opinion. I thought that was very commendable of him. So, yes, you might come across one that will just do it to help.

The purpose of my blog is not only to update you on my daily journey, but let you know what I am going through - in every way. I hope NONE of you have to experience this but reality is, some of us or someone we love may have a serious diagnosis throughout our lifetime. So, I hope this information is something that might help you in the future.

Remember, you CAN get the best treatment by the BEST doctor. You just have to insist on it, believe that you can - and it will happen.

Today's Daily Affirmation:

"Love is all I need to fix my world!" - Louis Hay

I feel your love and it strengthens me everyday!! Thanks for walking w/me on my journey.

HUGS!

Rachelle

More phone calls.....surprised???

2009-10-12T21:54:00.000-07:00

Hi everyone!

After I worked all day, I got on the horn (phone) and made my 'usual' round of calls. Stanford actually called me (yea!) and gave me the doctors email so that I can request any literature/data, etc.. that I need for my appeal. I also sent a fax to my primary physician to see if she could set up a 'peer to peer' call w/the Stanford doctor and a physician in the appeals office. I don't know if this will EVER happen but the Stanford doctor is more than willing to give his stance on my situation, but they need to call him (his nurse explained to me why and it makes sense but just makes things harder for me). So, I did my part now it's................you know....................the waiting!!!!!!!

I am working on my appeal - that seems to get harder and harder each day. I keep changing it so tomorrow I am going to go over it, AGAIN, and just stick to the facts! I have to take the emotional part out of it because really, they don't care about that. They only care about things that could bite them in the butt later, so I have to stay focused on the facts. One of my AWESOME 'followers' is going to look it over for me because he is AWESOME at writing things like this (thanks Ronn!!!) :) Then after that, off to the attorney before I send it in.

My little man is SO much better!! He finally slept through the night last night without waking! Some people ask me how I keep plugging away at this and stay strong and I will tell you that A LOT has to do with sleep. When my kids are NOT sick, they are the best sleepers. If my little Camryn wasn't sleeping the way she was from early on (12hrs/night at 12 weeks), I KNOW I would be handling ALL of this quite differently!!! Austin has always been a good sleeper too - all because of the '3 Day Sleep Solution!' Davis Erhler's program ROCKS!! After my husband's near-fatal accident, I called Davis to help me get Austin on a good sleeping/napping schedule. I really needed help because not only did I have a newborn, but a very sick husband.

She changed my life. Austin was 9 weeks when Chris had his head injury and after the first night I talked to her, he was sleeping 10hrs - then 12... I could not believe it. So, I handled that tragic time MUCH better because "I" was able to sleep and get some rest. Same with my situation now. I found out about my brain tumor when Camryn was 11 weeks old - and she was sleeping almost 12 hrs/night. It made the BIGGEST difference! I don't know where I would be had I not found Davis (thanks Kim)!!! You really are the best and I vote YOU for President! :) You can check out her website on my 'favorites' list (right side of my blog). Can't wait to see you Sunday! :)

Tomorrow I am home with the babies. Mom is out of town and no one to watch them all day. It'll be fun to just hang out at home and snuggle in this cool weather! I LOVE Fall!!! :)

Today's Daily Affirmation:

"Today, I choose to focus on Life's small gifts,

a touch, a smile, a fragrance.

Today, I choose the Good that Life has to offer." - Laura Dolson

Many lessons learned through all this!!! I am a better person for it, I am more grateful for the small gifts in my life and I look forward for all that is to come.

Have a great night and SLEEP WELL!!!!! :)

Rachelle

Tissue anyone??

2009-10-10T19:29:00.000-07:00

This family is going through a TON of tissue!! First Austin and me, then Chris and little Ms. Camryn is the only standing warrior!! :)

As most of you know (from my previous posts), my little man was not doing so well this week. I took him into the doctor yesterday (asking for meds this time) because I felt like he had croup (and he does) and 3 weeks is more than just a 'virus.' They swabbed his nose to test for different strands of the flu. The antibiotics haven't kicked in yet and after his nose 'swab', it seemed like his nose just started draining like crazy! My poor little man.....he is such a good sport when he is sick. At least I know that he should be getting better in a few days. My husband had to work several days in a row and he got it too.........well, I guess it's better we all get it at the same time and then be done with it....right?

Yesterday I just took Austin to the doctors and then finished up several follow-up phone calls. I called the doctor up at Stanford and they did receive my 'help-me' fax. :) The other physician too (the neurosurgeon contracted by Sharp who actually 'told me' to go up there)..........I really need him to back me up and put a referral to Stanford too. I am sure they will all get denied but the more on paper, the better.

I have written my appeal, over and over, and I keep changing it. I need it to be one strong appeal and I am waiting for Stanford to send me some hard facts/statistics/whatever as to 'why' their procedure is better than Sharps. If you are doing any type of appeal, you really do need solid, supporting evidence to back up your request. I am definitely going for the 'wow' factor. :)

Today was spent at home, couped up with a bunch of sickies! :) The weather is sooooooo nice right now!! I love Fall and can't wait for this holiday season! Before the end of the year, my goal is to be DONE with treatments and on the mend!!! I want a 'tumor free' life for 2010 and ever after!!! :)

Today's Daily Affirmation:

"I find it easy to accept my condition exactly the way it is right now, because I know that it is the perfect starting point for creating health." - random healing affirmation

I would have to agree that it does get easier to accept my condition, it's the 'waiting' for treatment that has been the real challenge. I don't think I would be as strong without all of your support!!!

This last week was better than the last and I am just telling myself that it's going to get better and better.

Have a great Sunday!!!

Hugs.. :)

Rachelle

A productive day makes this lady happy!!! :)

2009-10-08T22:18:00.000-07:00

Today seemed pretty productive........although I am still exhausted (last night wasn't as bad as I thought it would be), I got to do a lot of follow-up calls, see an attorney and organize my desk at home. My cold/cough actually felt a LOT better today so I am think I am finally on the mend! YEA! :)

Finished up my 'notebook' for the attorney. Made copies of all my medical records, physicians reports, info on my tumor, Cyberknife (Stanford machine) vs. Brainlab (Sharp machine) info, etc.... It was all organized with tabs for my 'timeline', doctors, tumor info, all the 'tests' I have had, MRI/CT, etc.... The notebook just keeps growing!

The attorney I met with specializes in health insurance. He knows quite a bit about dealing with them. So, we went over my situation and discussed details of all that's been going on. He was a very nice man. My intention of my visit today was to just see what possible 'chance' I had in dealing with my insurance company. I am not looking to have an attorney fight this for me, right now. In time, I will know more of what I need to do (or not do). It was a good meeting and I felt like I got some really good information from him.

Did some other phone calls and finally talked to Connie from the SD Brain Tumor Foundation. She gave me a lot of info and is sending me some paperwork to apply for a grant from them. They can give up to $2-4K in grant money to go towards medical bills. It ALL adds up!! :)

Today's Daily Affirmation:

"I am grateful for the gift of possessing inner strength.

I am able to face any struggle with the love that emits from my heart." - unknown author

I do feel that even though each day seems to be a major challenge, my inner strength does get stronger and stronger. Things are coming together, slowly but surely.

Night! :)

Rachelle

Need some sleep - BAD!!!

2009-10-07T22:48:00.000-07:00

Was up (again) last night with Austin. Poor little guy....had a cold a few weeks ago, got over it and now a relapse! :( He gets the most wicked coughs I have ever heard. And of course, there isn't much you can do with this other than let it ride out. So, I have been up 3 nights w/him (as "I" am trying to get over my cold too) and now as I am writing this, I can hear little Ms. Camryn coughing and sneezing - UGH! I guess another sleepless night........................

THANK GOD FOR OUR MOMS! My mom came to my rescue this morning. She was going to watch the kids while I went to work but there was NO way I could even drive my car unless I got a little more sleep. So, when she showed up, she watched the kids and I went back to bed. Only slept an hour (but hey, when you are mom - that is A LOT!) and then got up to get stuff ready for the attorney. Went to my primary doctors office to get copies of reports/records, etc.... Then I worked on putting a 'notebook' together for the attorney. Basically it was my notebook that I started awhile back but a duplicate for him. The more organized you are and you have it all ready for them, I do think that if you end up hiring an attorney, it can save you some $$$.

Anway, I was getting all this stuff ready and realized I needed more time. What's really important to an attorney is a 'timeline.' As in, a 'timeline of events' that have occurred since the beginning of the 'problem.' So, I had to update my 'timeline' - which took me a few hours because it's best to be as accurate as possible. So, I had to go back to reports and refer to exact dates of when I met 'who' and who said 'what' about my condition. So, it's almost 11:00pm and NOW I feel like I am ready to meet him! :)

I am meeting the attorney tomorrow and we'll see what happens!!! Say prayers that it goes well!!!

I also faxed a letter to the doctor from Sharp who 'told me' to get a consult up at Stanford. Of course that little bit of information was not in his report so I told him that I took his advice, went up there and that I now need him to send me a referral up to Stanford for treatment (I also sent him a copy of the Stanford doctors' report). We'll see what happens with that.

Then of course, I faxed a request to the doctor up at Stanford (that I want to treat me) and basically said, "HELP!". I asked that he do a peer to peer w/Sharp (meaning he speaks to a physician in the referral dept. on my behalf), that he appeal or he also puts in a referral for me to be treated at Stanford. I am not sure which one they do first, etc...but just basically told him I needed his help to get up there. We'll see what happens with that too.

I am still 'here' but at least I feel the ball is rolling - the question is, which direction is it going to lead me too...

Although it was hectic today (mainly because I was soooooo tired), I feel like I am moving forward. So, that is good in my world. :)

Today's daily affirmation is a biblical one:

Trust in the Lord with all your heart;

do not depend on your own understanding.

Seek his will in all you do, and he will show you which path to take."

Proverbs 3:5-6

I guess this means I shouldn't think ahead about which way the ball will roll. I have to have faith that trusting God will take me where I need to go.

AMEN!

Rachelle :)

DENIED! No surprise here...

2009-10-06T17:47:00.000-07:00

Well, I got the 'formal' denial today from Sharp. Called my doctors office because I hadn't gotten anything in the mail and it seems like it's been months since she turned it in. Her nurse said it was denied and she was going to fax me a copy (since I need to see the reasons why and get on my appeal or on my next plan of action).

I knew it was coming but I still cried. I just know I have a lot of work ahead of me and really - who needs to deal with all this when you have a tumor growing in your head! :(

So, remember my Plan A, B, C & D? Well, I went straight to Plan D today! I called an attorney and am meeting with him tomorrow. Not that I am not going to do the others but remember, they ALL take time. So, while I work on A, B & C - Plan D will already be underway (and I 'may' not even need that - hopefully!!).

More phone calls tomorrow and I'll be anxious to hear what this attorney has to say (at least I will know if I have a chance or not). Tomorrow's just a consult so no money going into that - yet...

I told you a few days back that this would be a week of answers and I think it will.

I will be calling the doctor up at Stanford tomorrow to have him call my insurance down here for a referral request or appeal (don't know which applies but doesn't matter) - like he said he would. Let's just hope and pray that he can make an impact on all this.

Today's Daily Affirmation:

"Forget mistakes. Forget failures. Forget everything except what you're going to do now and do it. Today is your lucky day." - Will Durant

Let's hope my 'lucky' day is tomorrow.. :) :)

Night!

Rachelle

A new week begins!!!

2009-10-05T19:17:00.000-07:00

It's Monday and I prayed over the weekend that this week would be better than last week! Although I am verryyyyyyy tired (still sick and one sick baby), my mind is right where it needs to be - getting to Stanford asap!!

So, I have my Plan A, B, C & D all ready to go...........remember in situations like this, you have to have the next 'plan' already in place. I have no time to spare here.

Plan A - appeal my HMO

Plan B- get the doc up at Stanford to help appeal my case (he said he would personally make a phone call and I will hold him to that! :)

Plan C - Ask the doctor to do the work pro-bono (yes, for free.....it can't hurt to ask!!! It would at least cut out some of the expenses)

Plan D - hire an attorney to fight my HMO

I was able to contact another organization today. Thanks so much Rian for the info!! :) It's called the San Diego Brain Tumor Foundation. Founded by Connie Reeves Campbell. Her husband was diagnosed with a brain tumor in 1998 and lost his life in 2000. Connie then started this organization because she knew first-hand what an impact this diagnosis can have on a family.

Check out this link on brain tumor facts & statistics. Little scary to read when you have one but the more educated I am, the better off I will be.

http://www.sdbtf.org/facts-bout-bt.html

I emailed her and am waiting to hear back. They can help out in several different ways so I am interested to hear what she has to say.

I also looked into attorneys. Got a few recommendations from a friend - thanks Beth! I need a good one that 'fights HMO's.' If anyone knows of one, send their name to me. Also, when you look for an attorney, it's a good idea to go 'interview' them first because you obviously want one 'you' are comfortable with. Just like me searching for the doctor best for 'me', I need an attorney who has 'my' best interest and I feel comfortable with.

Obviously I am hoping I will never get to Plan D!! BUT, if I do, I'll be ready.........

It will still cost me less to hire a good attorney and get this paid for then to pay for the whole procedure itself. Yes, it's a risk but I am willing to try that first.

I have a feeling I will have a lot more answers this week. My doc up at Stanford is out of the office until Wednesday so I have two days to really get a lot of things done.

PRAY that answers come my way and that I can keep moving forward!

Today's Daily Affirmation is an affirmation for tumors:

"I lovingly release the past and turn my attention to this new day." - Unknown author

It's a new Monday and a new week! Enough now and let's get this show on the road!!

Hugs to you all -

Rachelle

Happy Birthday Ms. Camryn! :)

2009-10-03T21:51:00.000-07:00

Today was my little girls 1st B-Day!!!!! I can't believe how this last year has flown. I am glad to almost be done with bottle washing but at the same time, sad that the whole newborn/baby stage is almost over.. :( It's certainly bitter-sweet.......... I had two rough pregnancies (my tumor caused Bells Palsey with my first pregnancy and severe vertigo with my second). Little did I know that I had this tumor but now that I do, I have been told by two doctors that it's best not to get pregnant, ever again. Reason being is that there are two 'types' of tumors mine could be. One has estrogen receptors on it - therefore could grow by the increase in hormones during pregnancy. Chris and I had always talked about only having two but when someone 'tells' you that you shouldn't have any more kids, it makes that pill a little harder to swallow.

I am blessed with two HEALTHY children.......so, I am o.k. with how things are! :)

I FINALLY figured out how to add music!! Thanks Nancy! :) I think I told you that right now my favorite song is the "Black Eyed Peas - "I Gotta Feeling" - so upbeat and fun. When the sh&% started to hit the fan with my situation, I kept hearing this song and it just instantly put me in a good mood. So, when you connect to my blog - that is what you are going to hear first!!

My second choice is Van Halen's "Right now." I'll also tell you that I love country, R&B, hip-hop, rock, heavy metal - ALL of it...I am definitely more of an '80's queen' but I like a lot of different genres......so, you might find my playlist a little strange.. :) But, there is a story to each of them.

Now, back to my second choice. When I was going through paramedic school, I was having a little bit of a hard time in my field internship. It was almost guaranteed that 50% of your class would fail medic school but mostly in your 'field' time (which consisted of doing approximetly 3 months of shifts with a paramedic crew and having them critique you). It was one of the hardest things I ever did and I don't care what anyone says but basically in approximately 10 months, you are taught to diagnose patients and make life threatening decisions. It's very intense. So, to get pumped up before my shift, I would play this song over and over on my way to the fire station. For some reason it got me focused on what I needed to do with each shift. Everyone has a different way of dealing with things and this is what helped me. I ended up graduating and everytime I hear that song, it takes me back to those days. I have to give a shout out to Jim & Phil (my paramedic preceptors from Vista Fire) who put up with all my ups and downs and to Mary C. (my field instructor) who rode my butt (like white on rice) but pushed me to be a good medic. THANKS!! :)

OK - got off on a little tangent there but sometimes it's fun to reminisce about the ol' days!! :)

What a GREAT DAY!!!

A friend of mine posted a comment on my blog on how to remember to 'stay in the moment and to not dwell on the past or worry about the future.' I was certainly doing that this last week so thanks Nancy for bringing me 'back' to where I need to be. Post your comments!! I read all of them and they really make an impact on me.

Today's Daily Affirmation:

Every day in every way I am freely opening my senses to the beauty in myself and opening up to all the beauty around me and in all the people I encounter - Random affirmation from 'holistic healings.'

It's been a long day but one full of memories. Happy Birthday to my sweet little baby girl. I love you!!!

Rachelle

One step closer...

2009-10-02T20:38:00.000-07:00

Well, I made all those follow-up calls to see what the heck is going on and I am glad I did. I didn't want to go into the weekend 'not knowing' anything has progressed at all.

Talked to a few different people up at Stanford. I talked to Doctor #2's medical assistant and told her my situation, the urgency, how can she help me etc and she was awesome. She told me that they faxed some information that would help my primary doctor w/the referral and she also said that if I got denied treatment (which was done verbally but I have not gotten the formal letter yet), that Doctor #2 said that he would call Sharp himself to speak to whomever he needed to talk to. Of course I thought this was good news and I will surely hold him to it! :)

I also talked to Radiology/Oncology to see if I could set up a consult appt w/that doctor (it has to be done before any treatment is started) and she said she still hasn't gotten approval but it could come in Monday. I am still going to make an appointment - it'll be week #2 and I can't keep waiting. I just have to assume my situation is the worst and if it isn't, then "I" will have been my own advocate to be on top of things. People who sit around and just 'wait' are the ones you hear that don't have the good outcome - I am not going to be one of them.

This week was a rough one - probably the worst I have had in awhile. Gosh - I know SO MANY of you are praying for me and I need more of them now than ever. I can see how people 'give up' and do what is easiest...................but I just can't. I have to keep believing that all of this will work out!!

My little girls 1st B-day is tomorrow - can't believe it. I am going to enjoy the day and be grateful for my healthy, little girl and all the joy she has brought me.

Today's daily affirmation:

CHANGE YOUR PERCEPTION:

"Remember this maxim: When you change the way you look at things, the things you look at change. The way you perceive things is an extremely powerful tool that will allow you to fully bring the power of intention into your life." - Wayne Dyer

I believe that next week will be better than this one. This one is over and it's time to move on.

Thanks to everyone for their support!!!!! I can't thank you enough!

Hugs -

Rachelle

2009-10-01T20:13:00.000-07:00

Today was somewhat uneventful.....other than I think I am getting my babies cold! :(

I have been so healthy the last 9 months (since I have been doing this holistic eating plan w/herbs) but with all the stress lately, it's no surprise that my immune system is not so strong right now.

Monday, I get an estimate from Sharp on how much the procedure costs there. Then I am going to get Stanfords and hope that it's more cost effective to go to Stanford (I doubt it but we can always hope!) :)

I still haven't heard from Stanford. Maybe because the gal I spoke to is waiting to hear on her end. I will definitely call her back tomorrow, before the weekend, to see if she has any updates. The waiting is a killer - another day passes and pretty soon it will be two weeks since my trip to Stanford.

On a happy note, my beautiful little baby girl turns 1 on Saturday!! :) I have been scrambling the last few days to get ready for her birthday. I can't believe I gave birth to that little girl almost a year ago now. She is the happiest baby on this planet and such a joy. Camryn and Austin give me so much strength!! My love for them is indescribable.

I attached some recent photos of them.... aren't they the cutest??!!!! :)

Today's Daily Affirmation:

Beliefs have the power to create and the power to destroy. Human beings have the awesome ability to take any experience of their lives and create a meaning that disempowers them or one that can literally save their lives. - Anthony Robbins

I believe everything will be o.k.

I believe I will be healed.

I believe this happened to me for a reason.

I believe this will make me a better and stronger person.

And I believe in the power of prayer.

Things are a little tough right now so stay strong with me and keep sending me your positive energy and prayers......!!!!

Love to you all -

Rachelle :)

PS - To my '11' followers... :) POST A PIX! I want to see your beautiful faces!! :)

Another day of waiting....

2009-09-30T22:02:00.000-07:00

Today is a short post...

Followed up on phone calls.....of course no calls back. VERY frustrating. I haven't bugged them enough yet to want to ignore me.....!!! :) I am hoping I get some news this week...time is of the essence and I keep feeling the clock tick as days go by. It has been 9 days since my trip to Stanford and had things gone my way, I would have started radiation treatment today. It'll come......I just have to be patient right now for some reason.

Found this quote for a friend who needed some postive energy her way for her 3rd round of chemo (You GO Nancy!! You are strong and amazing!!! Halfway up Chemo mountain!!) :)

"Feed your faith and your fears will starve to death." - Author Unknown

Today's daily affirmation:

Gratitude unlocks the fullness of life. It turns what we hve into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow. - Melody Beatty

Until tomorrow!!

R-

One door closes and another opens...

2009-09-29T21:06:00.000-07:00

I think I finally got connected to the person I need to really help me out up at Stanford. Talked with "Jennifer" today and she told me that Sharp should cover this.....that Cyberknife is different than Brainlab (the machine they use). I also think they 'should' but I am not the insurance administrators who are looking at $$$$$. She also gave me some websites to get information (info on Cyberknife and for appealing) and she also said that 'they' would put in a request on my behalf to go up there.

I am trying hard not to get my hopes up because it seems like things just have not worked out in my favor but we shall see. In the meantime, I am still working on my appeal, 'waiting' to get information from Sharp and Stanford and then I will send it off - and PRAY like no tomorrow that something good happens. I am going to have to go get a thicker 3-ring binder - my 1" is maxed out now! :(

In the meantime, my best friend Kim decided to throw a fund-raiser for me. She called to tell me and said that it was 'already in place' and that it was going to happen......of course I am in awe of her generosity, all the time and effort she is taking to do this is just amazing. I do kind of feel a little weird about it all because NEVER did I think I would be in this position. All the love and support I have gotten from friends (even those I haven't talked to in a long time) mean the world to me. It keeps me going and pushes me to just get this stuff done - and to not give up.

Kim - I love you to death and am so glad we have stayed best friends for 25+ years!!! I am still at a loss for words. And Peter - you rock!!! (Kim's hubby!)

Today's Daily Affirmation:

"Be open to the messages and mysteries of your body and its symptoms. Be eager to listen and slow to judge. What you learn may have the capacity to save your life." (Dr. Christiane Northrup)

Wow.....

Night :)

Rachelle

I have a brain tumor????

2009-09-28T20:19:00.000-07:00

I have never referred to my tumor as a 'brain' tumor because that just sounds really bad. So, I always described it as 'near, around, next' to my brain.....but after talking to several people today on the phone, I realized that I need to 'own' what I have and not be afraid of it. I think when I heard this in the beginning, I just ignored it and thought, "not me!" So, there I said it - I have a brain tumor and it has to go!!!

Rough morning......

First of all, I was up all night with my little guy. He has this horrible cough and me being the 'former' paramedic, I was listening to his lung sounds, giving him some meds to try and give him a little comfort. I think we both looked pretty bad this morning. Today he was a 'little' better but now Camryn has it!! So, no sleep again tonight!

I went into work for a little bit and when I got there, I think all this stress just hit me like a ton of bricks. I am SURE the lack of sleep didn't help but my mind started going a hundred miles an hour with questions like: How am I going to get to Stanford? How am I going to pay for this? How am I going to win my appeal? Blah, blah, blah!!........ Then I started thinking about holding Austin last night and what if this is cancer, what if, what if, what if...

I won't go into the ugly thoughts I was having. Sometimes, just sometimes, I let this ugly thing get best of me. Anyway, I got over it quick when my co-worker came over and told me to knock it off - that I will be just fine!! Thanks Gloria - I needed a little kick in the pants! I feel strong 'most' days.....but sometimes it just all seems to be too much. I think because there are SO MANY 'unknowns' with my diagnosis, I just wish I had all the answers up front (even if it's not what I would want to hear).

Left work early and took Austin to the doctor - don't know why. I always know what they are going to say (I swear I should've gone to medical school)..... :)

Came home and my mom hung around so that I could make a TON of phone calls. So, I accomplished a lot and felt good! I called Sharp to get a cost estimate of the treatment (to compare w/Stanford - who knows, it could be a cost savings to Sharp?). Then I called Stanford to ask for HELP!!! I asked if I could basically be a 'guinea pig', case study, whatever.....I figured that since this is a rare tumor, maybe they would want to write about mine (since mine has some interesting elements to it). I am waiting to hear back. I also called the doctor up there and left him a message to call me. Some of you are probably thinking, 'what'?? But why not?! I do really need to get his opinion to see what I could do. Worst case, he doesn't call me and his nurse does. And if he doesn't, I have a letter ready to fax to 'him' to read... :) :) :) I also contacted The Brain Tumor Society and they gave me SO MUCH information! What other organizations can help with my travel expenses, gas cards, etc.... (thanks Gloria for the tip)

Then I called the MEA (our union). They have a 'liason' who works with the employees and insurance companies to appeal denials. I am really hoping they can help out.

So, I felt like I made some progress today and now the waiting game starts. (Take note: When you call someone for something, write the day, time and who you spoke with...because if I don't hear from them in a few days, I will be calling that person back. Follow ups are crucial for stuff like this!!) Most of you know how organized I like to be (it's gotten bad though after kids) but I have ALL my information in a three ring binder and organized - this will save you SO MUCH time if you ever have to go through something like this.

In the meantime, I am selling a bunch of stuff on Craig's List and EBAY to start saving! I have a really nice entertainment center sitting in our garage that I should have sold months ago. So, I am motivated to clean house! :)

I need to get up there asap. The doctor's wanted to treat me as early as this week or next week and that is all I can think about. I gotta keep moving forward and pushing this thing along.

Today's Daily Affirmation:

"My life gets more fabulous everday!" (Louis Hay)

OK - when I read this I thought...I am not sure about fabulous but definitely interesting!!

Thanks for sharing my journey with me.

I love you all!!! :)

Rachelle

Forgot one thing!

2009-09-26T23:55:00.000-07:00

Forgot to tell you that the girl singing the 'brunette' of ABBA was only 19 years old! She was awesome!!!

Night again!

Rachelle

Dancing queen.......

2009-09-26T23:03:00.000-07:00

OK - two concerts in a week for me? Unheard of!! I hardly get out these days with two babies! It was Britney Thursday night and tonight - ABBA-FAB!! I got tickets for my niece for her birthday as a gift (yes, my 9 year old niece LOVES ABBA - thanks to Mama Mia!). And so do I!! I am such a 70's/80's girl. Chris and I have complete opposite taste in music. I love just about ANY 'big hair' band and he is always like, "who's that?"....yes, he is younger than me so I just blame it on that! :)

We had a fun night and I think Kristin really enjoyed them. Love ya girl - you dancing queen!!! Instead of 'gifts', I am going to take my niece and nephews 'out' to do something for their birthdays. I just want to spend more time with them - they are all growing so fast!!

Today I worked a little on my 'appeal' and tried researching the internet for what 'little' information there is. Funny thing - ran across a website called, "Don's Facial Nerve Schwannoma" - some guy posted a website on information on this because he had a hard time finding information anywhere (welcome to my world). I found his site the most interesting and informative - really... And GET THIS!! He had the doctor that I went to see at Stanford TREAT HIM (doctor #2 - the one I want)!! How weird is that? I thought I would email him to get try and get some more info.

I felt a LOT of twitching in my face today (it comes and goes but my forehead felt 'tight' most of the day). This is what sucks sometimes, because then I am constantly thinking about it and wondering if it's growing or what. It's finally calmed down a little bit (maybe that wine did it at the concert..).. :)

Tomorrow my hubby finally comes home! Three days at work, bike ride in the morning and then some family time before the week hits. Crazy how the weeks seem to fly by.

Today's Daily Affirmation:

The more I fulfill myself, the more people love me. (Louis Hay)

On my way home from the concert, that Black Eyed Peas song "I Gotta Feeling" came on, back to back on two different stations....... so I was totally rocking out to it in my car - I LOVE THAT SONG! I have liked it ever since it came out and I was so jealous when Chris worked Street Scene and was up on stage w/them!! It's amazing how music can change your attitude instantly, uplift your spirits and just put you in a bitchin mood..........all it takes is one good song. Once I can figure out how to post music to my blog - you'll be hearing it!!!

NIGHT!

Rachelle

Too much, too much, too much!

2009-09-25T20:29:00.000-07:00

Some more bad news. Can't change my insurance to a PPO - period.

So, my only options right now are to:

1) Appeal, appeal, appeal

2) Wait until next 'open enrollment' to switch to a PPO (July 2010)

3) Pay cash (I am getting a more accurate estimate but basically it's like purchasing

another house!)

All the above could actually make me grow another tumor - seriously.....

Had a really bad morning.......why?? Because it's really hard to stay POSITIVE all the time when I keep getting bad news!!! And all this bad news does NOT help the potty mouth I am trying to get rid of! :(

Stay positive, stay focused. I can do this, right? I feel like it's me up against several 'admin savvy' doctors and all their attorneys. So, I have to be smarter than them, find the avenue that will get what "I" need.

How fitting for today's Daily affirmation:

"Take the attitude in your life that everything that happens to you - especially if you've been hurt or wronged - has a reason that you sometimes can't see. Be willing to go along with it and be as gracious as possible. Sometimes you have to accept the unacceptable. When you do this, your cells won't suffer and your immune system won't either. And you'll feel a lot better!" (Dr. Christiane Northrup)

"Be as gracious as possible" - o.k...that can be hard on days like today. But, at the end of the day, when I reflect on the 'big picture,' I still have so much to be grateful for in my life. Things will happen.....

Night -

Rachelle

Yesterday and Today..

2009-09-24T23:43:00.000-07:00

OK - I missed writing yesterday because I was so tired. This week has been exhausting to say the least. I will try to journal daily but with all that’s going on, I may miss a day or two. When I start having treatments, I will try and get Chris or someone else to keep you all updated.

Update from yesterday!!!

I met with my primary physician yesterday. You are awesome Dr. Lynne Champagne!! We discussed my recent trip to Stanford and she agreed with me going to Stanford and getting treated there. She said she was going to call the referral 'place' directly to try and get a feeling if they would go one way or another. It’s so nice to have a doctor who ‘listens’ to the patient (don’t get me wrong, I have done my homework) but she has been very pro-active with my situation! I have been with her for 10 years and she has been the best! Thanks so much Dr. Champagne for really helping me when I need it the most!!!

I talked to a couple of people up at Stanford to try and get them to send me some ‘series’ from Doctor #2 (ie: documents, stats, papers) on my condition, the rarity and why I need Stanford to treat me (I hope you all are listening to what I am doing in case you need it – hopefully not but I have learned a lot with Chris’ accident and now my condition). You CAN get the best healthcare – you might just need to work at it a little. This will help my doctor and myself in case I need to appeal. I am getting prepared, ‘just in case.’

So, all that took place yesterday.

As for today!!!

Back to work. I took Mon – Wed off because I have had too much to do to get things going with my situation. I have actually taken quite a bit of time off (off and on) for the last three years (2 babies, Chris’ near-fatal accident and now my situation). I am grateful for my supervisor, lab manager and co-workers who have supported me and have not given me crap. SDPD Crime Lab rocks – love you guys!

Got a call from my primary doctor. She called in to see if my insurance would even 'entertain' the idea of approving it and they said no. She also said they would probably deny my appeal (because my insurance offers radiation and HAVE treated my condition before). The problem is, they haven't treated it a lot! The doctor I spoke to - only a couple times. I don't feel comfortable putting my situation in the hands of someone who has dealt w/my 'rare' tumor, a couple of times - end of story. My primary physican was upfront and I appreciated that, I think she too understands what 'position' I am in - a crappy one. She also pretty much said that if she was in my shoes, she would probably want the same thing. I asked her to put in the referral (to have it on paper) and even if it gets denied, I'll appeal it. I want to go to Stanford so I am going to find a way to get there. This part of this WHOLE thing sucks the most - really. I had a few meltdowns but I am over it and ready to get 'my way.' :)

After work, time with the babies, hubby is at the FD (Fire Dept.) today and then off to the Britney Spears concert! NO – I am not really a fan but my neighbor had free tickets and offered one to me and some other friends/neighbors on my street. I could use a ‘girls night out!’ I guess it’ll be fun to say, “been there done that!” Thanks Christina!!

...........Just got back from the concert (it's almost midnight) and it was actually fun. The entertainment was good, she has awesome dancers and it has inspired me to take a 'hip/hop' class (why not??!!). Just because I am 38 doesn't mean I can't dance like that!! :) OK - maybe not like them but I can try. I have always wanted to so why wait any longer!

Today’s Daily Affirmation:

BE AWARE OF YOUR IMMORTAL SELF:

“Let go of the idea that you’re a body that’s destined to die, and instead seek an awareness of your immortal self. Affirm: I am eternal, and that means I showed up here from the infinitude of spiritual intention to fulfill a destiny that I must act on.” (Dr. Wayne Dyer)

I am DEFINITELY acting on my situation!! It amazes me how ‘events’ can come up in your life and really change the person you are. I am already different from just a few months back and I look forward to the person I will be after this is all done.

Hugs to you all!!

Rachelle

Stanford visit

2009-09-22T22:23:00.000-07:00

The Stanford trip was a huge success (at least Kim and I thought so)! :)

First off - on my way to the airport, two songs came on that reminded me of my babies and Chris. The weird part is that they came on back to back and it just made me feel like they were going to be there with me the whole trip (in spirit of course).

Got to the airport and had a quick, uneventful flight to San Jose. When I arrived, I was off like a mad-woman on the hunt for my rental car. Kim was flying in a half hour after me so the plan was to get the car and then be ready to pick her up and then head up to Stanford to make my first appointment.

Kim got in on time and all was going good (except for the fact that my 'lovely' rental was not cleaned from the 'previous' users and smelled like an ashtray...ugh). Note to self: DO NOT use Fox Car Rentals... :)

We headed up to Stanford, got to my first appointment and Doctor #1. He had a lot of information for me and recommended the Cyberknife treatment (3 sessions vs. the 6 week session the San Diego doctor recommended). He said Cyberknife is better because the fractionated radiation (6 week session) in addition to treating the tumore also treats the cells 'around' the tumor. The problem with this is that it can cause cancer in the future! :( Any radiation treatment has the potential but the Cyberknife is very accurate to only treating and killing the dreaded thing.

He was very nice, took a lot of time with us and I felt it was very helpful.

Doctor #2 was very nice man too and took almost 2 hrs with our visit. One thing he saw that no other doctor has seen or noticed was the tumor. Yes, he put this camera thing in my ear and showed me the tumor on this TV that was up on the wall. Once I got past the grossness and embarrassment of seeing several hairs and wax build up in my ear (as my best friend Kim was saying, "that's fascinating!") I too thought that it was pretty fascinating. (OK - didn't mean to disgust you all but the doctor put me at ease by saying - most ears are like that! :) Funny too - I made SURE I cleaned my ears out good that morning because I KNEW they would be looking in them. I just never thought about what my little QTip would be up against!! :) Doctor #2 was VERY informative since he has treated with radiation AND has done several surgeries. So I have decided - he is my man! I want Doctor #2 to treat me.

So, this is easy right? I finally got answers, found a physician I like but 'oh wait' - I have an HMO................................

So now comes a LOT of homework. We shall see how that goes but both doctors recommended that I come up for treatment as soon as I can (like in the next few weeks).

Doctor #2 did say he has a 'red flag' about the 'amount it grew in such a short time.' If the MRI (prior to radiation) shows another substantial increase in growth, we might have to look into surgery (for biopsy reasons). Long story short, there can be damage to the hearing/facial nerve from radiation....so, if surgery has to be done after that (for some reason), then the chances of hearing loss are pretty good and facial nerve being regenerated, not very good either.

I did learn that my tumor is very rare. I guess that answers why I couldn't get so many of my questions answered in the beginning.

I see my Primary Doctor tomorrow to update her and then we will go from there.

Pray that my insurance doesn't make me appeal over and over and over for treatment and that I am able to get this done soon.

Today's daily affirmation:

I ANSWER TO MYSELF AND NO ONE ELSE. The person looking back at you in the mirror is the one you have to answer to every day.

Thanks for all your prayers and good thoughts! I feel them and they keep me strong!!

Love,

Rachelle

Great day at Stanford!!

2009-09-21T22:15:00.000-07:00

Hi everyone!

Kim and I had a great (but exhausting) day up at Stanford!

I have so much to write but my brain is literally fried!!

Here are some pictures from today. I have been up since 4:30 so

I am off to bed and I will update you tomorrow.

All I can say is that I am SOOOO glad I went! Got a lot of answers and I

choose a doctor up at Stanford to take my case - he is awesome!!

Night :)

Rachelle

Stanford - here I come!!!

2009-09-20T19:47:00.000-07:00

Well - tomorrow morning I leave at the crack of dawn to head up to Stanford to get some answers. These doctors don't know what they are in for........ I can just see their eyes when I bring out my 'pages' of questions! :) But hey - that's what they get paid the big bucks for!!!

My best friend from high school (Kim) is meeting me up in San Jose and then we are off to my first appointment (thanks Kim for meeting me there since Chris can't go - you are the best!!!) :)

After my first appointment, we have about 4 hrs to kill then I have my second appointment late that afternoon. After that, it's back to the airport then back to San Diego.

Can't wait to see what they have to say. Hopefully it's more 'clarity' than 'confusion!'

Today's daily affirmation:

I TREASURE ALL OF THE EXPERIENCES I'VE HAD IN MY LIFE.

Each experience in your life was absolutely necessary in order to have gotten you to the next place, and the next, up until this very moment.

Pray for a safe flight for both of us! :)

Night!

Rachelle

All is well in my world today....

2009-09-19T19:43:00.000-07:00

Hi everyone -

Well, I started a blog. I have always been one to journal at times and I thought this would be the best way to keep my family and friends informed on my journey! So, my blog title is 'All is well' , as in "All is well in my world today" (taken from Louis Hays 'daily affirmation' on her website). If I look at the big picture, I have SO much to be grateful for, and for some reason God chose me to go through this. I have had many 'things' come full circle on this journey and I am surprised to hear myself say this but if I could turn back time, I wouldn't change a thing.

As most of you know - I have been diagnosed with a facial nerve schwannoma. Basically, a tumor growing into my brain and ear canal - and it has to go! It has been almost 9 months since my diagnosis. Because it has grown 45% in 7 months, it is time to decide what type of treatment to do so that I can try and prevent permanent, irreversible damage.

I am feeling closer to a decision (which will most likely be radiation) but I am flying up to Stanford on Monday to get three more opinions (from the "best" around). Most of you that know me well, know that I will research something like crazy (thank God for the internet!!) until I feel like I have all my answers.

As far as the radiation treatments go, it's just now trying to figure out 'which one' to do and 'which one' is best for my situation. It can still cause damage to my nerves and yes, the side effects are one thing I am NOT looking forward too but my situation still is nothing compared to others I know that are dealing with a lot worse.

If there is one thing you can take away from my illness, it's that if you 'know' or have a 'gut feeling' that something might be medically wrong with you - then push your doctor for answers!! "I" asked for the MRI - the 'specialty' doctor wanted to send me to physical therapy. I said, 'nuh-uh' - I knew something was wrong. Had I never gotten one, I would almost likely be deaf and/or with permanent, right-sided facial damage. Yes, I know I can be bossy or pushy at times but it has obvious helped me with my situation. Don't be afraid to tell your doctor what to do - remember 'you' are your own advocate!

I'll try and post something each day. I appreciate all your support, prayers and love. PLEASE feel free to post a comment, daily affirmation or anything! I need some positive energy my way and you all have helped me make it through my 'many' journeys so far.

LOVE TO YOU ALL! :)

Rachelle