One more thing...

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!!!!!!!!!!!!!!!!!!!!!!!!!!!

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!!!

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...

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!

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...

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!

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...

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...

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...

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

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! :(

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!

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...

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