MRI results - finally!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

47 seconds later, he walks in the door."

- The End!

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

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

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

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

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

Today's Daily Affirmation:

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

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

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

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

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

You rock!

NIGHT! :)

Rachelle

BIG DAY TOMORROW! MRI RESULTS!

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

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

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

Today's Daily Affirmation:

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

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

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

XO -

Rachelle

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

Hi everyone!

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

Daily Affirmation:

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

Ain't that the truth!

Talk soon -
Rachelle :)

The road to ???

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

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

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

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

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

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

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

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

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

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

Today's Daily Affirmation:

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

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

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

Rachelle

Some exciting news!

Hi everyone!

A few exciting things have happened the last few weeks. When I last posted, I told you about my letter that I sent to Sharp regarding my experience and how I wanted to have my negative experience turn in to a positive for someone else. Well, I polished up the letter and mailed it off. I cc:'d it to my primary doctor, my neurosurgeon and my oncologist. I was a little nervous for some reason (I don't know why, maybe because I know a bunch of physicians will be reading it)but that's o.k. - I practically sound like one now from all that I have learned (smile). I am a PATIENT and I they need to hear from us every once in awhile! :)

After I mailed it off, a few days later, I received a nice message from my oncologist on what a "Well written letter" I wrote and that he was grateful that I am trying to be an advocate (on the patient side) for Cyberknife.

Almost two weeks later, I received a phone call from the Chief Medical physician from Sharp stating that she received my letter and to call her. So, I did..........................right away!

We talked for about 30-45 minutes. She asked about what "I" wanted from this and I said I wanted to see a change. That I thought no other patient should have to go through what I did and that I would be more than happy to set/arrange a meeting w/her, the CEO, whoever with Cyberknife to educate them not only of the advancement of this type of treatment, but the accuracy, success rate, less side-effects and most importantly (unfortunately) LESS cost to the insurance co. vs. conventional radiation. She told me she would relay my info to the VP. I told she can relay this info to the VP AND that I would like a follow-up phone call from him. That was last Friday and it's now Thursday and no call. I will give it until Monday and then I will be calling Mr. VP myself. As exhausting as this can be sometimes, I have to keep moving forward for those who don't have a voice. It kills me to think that there are patients right now who are possibly not getting the most effective treatment. And unless you are Erin Brokovich (like me... ha ha - thanks Holly), most people will unfortunately just do what they are told.

So, I will wait until next week and then make that phone call. I really felt good after my oncologist called and said those nice things about my letter. That keeps me moving forward.......... :)

I got a hearing test yesterday - my right ear's hearing is still within normal range. Even though it feels plugged I am just going to have to expect that for the next year (it takes 12-18 months for symptoms to subside post radiation). I can do that, I have waited this long and am now getting used to it.

What comes next? MRI in 5 months, hopefully some progress with Sharp and then I will be over this journey! ONLY GOOD THOUGHTS!!!

Today's Daily Affirmation:

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

Ain't that the truth! I am getting closer - I was really surprised I got a phone call that quick so that's good - someone is listening and hopefully knows that I am NOT going away. :)

Have a great night!
Rachelle

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

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

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

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

Today's Daily Affirmation:

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

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

Have a great night!! :)

Hugs -

Rachelle

3 Months post radiation MRI results in!

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!

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???!!!

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....

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...

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

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!!!

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! :)

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.. :)

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! :)

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

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...

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!!!

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!!!

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!!!

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...

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! :)

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!

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!

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!!!

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!!!

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....

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