Another day of waiting....

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...

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????

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!

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.......

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!

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..

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

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!!

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!!!

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....

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

"See God in every person, place, and thing, and all will be well in your world."
Louise L Hay Quote