Thursday, July 26, 2012

the baby effect

I am so thankful for the effect babies have on everyperson around them.  Grown people are happy to stop the busy advancement of their day to sing "itsy bitsy spider."  We listen to the lovely melodies created in a baby brain.  We praise every little success....lay on the floor...sing silly songs.  We completely forget about all the things we MUST do...right NOW...and just enjoy the unique lovely tiny person in front of us.  So that's it...I am thankful for little people!

hahahahaha...I did it.

This is part one of the vlog I recorded.  It was taking forever on my I shortened it, but it was still going to take I took I to a desktop and viola...success.  So here is my YouTube debut. Click the link to go watch.  I have two mare part to that I know the desktop can do it in less than 523 minutes.

to the moon and back

Wednesday, July 25, 2012

the day after...

3056...there it is in print.  Done with it.  What next?  
Well...I get to try a couple of new meds.  They will be very much like the first meds I took.  I will stay on Avastin...because to quote the best doctor ever. "Sometimes when people go off Avastin and stay off for a while there is an explosion of cancer growth."  Alrighty then Avastin stays...because this girl is absolutely NOT in the mood for an explosion of any kind especially cancer.  I will add gemzar and cisplatinum.  I will have treatment two weeks in a row and then have a week off instead of doing one infusion and having two weeks off.  Again to quote my doc..."cisplatinum is an older version of the platinum drugs so it is more toxic.  We split the treatments to split the toxicity.  Split the nausea." Wheeeee....back to nausea that needs splitting.  May need neulasta...and all the body and bone aches that come with that.  

So there it is in black and white for me to see...for all the see really.  I think I needed the trials I had on Monday so that when I heard the news I had to hear yesterday I didn't rip apart at the seams.  It is just another step. long as I get to be here and se my Bug grow up I am happy.  I will only put this out there to get other people's thoughts.  Wow...I can't even figure out how to say it.  If I feel like crap all the time...if I am in bed and miss the growing that is I gaining anything?  Don't get me wrong...I will take life any way I can get it...but I am NOT looking forward to being where I was a year and a half ago.  I will have to work on redirecting my mad, sad and scared feeling to strong, fighter, sunny, bright thoughts.  I'll let you know when that transition happens.

Today I am thankful that I am going to Amarillo in 2 days.  I will be traveling Route 66 with my top down in 2 days.  I will be spending quality time with my all time favorite person in 2 days.  I will be seeing Cadillac Ranch in 2 days.  

Goodnight you to the moon and back,
by the way...I tried to film a vlog...but it said it would take 586 minutes to load...can anyone help me understand this?  I finally gave up and went to bed last night without getting anything posted. boo!

Monday, July 23, 2012

no numbers...ever...again

Had a type of revelation today.  Actually I had a great heaving sobbing cry...twice.  Then I had a type of revelation.  I have been without counsel for this disease, from its onset.  I have had counselors that focused on other parts of my life that were being wrecked by cancer...but never really dealt with the HUGE PURPLE elephant in the room.  Honestly I never dealt with the elephant either.  I buried it...deep....deep...down.  I have cancer.  I am a person who will NEVER be able to say I beat cancer, I am in remission, I am cured.  I will for the rest of the time I walk the earth have rogue cells wreaking havoc in my body.  Like I said I bury this deep in my person and I try to live as if it isn't true.  I travel.  I plan fun things to do with The Bug and for the most part we do them (the jury is still out on me actually sleeping outdoors with her in a tent.)  Cancer reminds me that is is still there by bringing on a 2 day coma post travel.  I know now that if I travel two days after returning home I have an unbreakable appointment with my pillow.  Not too bad...I can totally handle a 2 day nap and I know I have friends that would be totally jealous of this amount of me time.  However it is a reminder that somewhere inside me cells are making me weaker than I once was.  

So today I went for lab work I gave the 3 vials of blood they need to determine how things are going in my fight.  That is what I am currently doing...everyday.  My body is fighting cells that want desperately to take over.  Every three weeks a get a number that decides how I am faring in the war.  For 2 years I have let my happiness, my security, my fear lay solely in a protein that exists in my blood.  Today I am thankful that I can see my life for much more than that protein.  I am a fighter...I am a warrior...I am in the trenches fighting insurgents every freaking day.  I went out looking for help.  Looking for a way to sort out this huge mess of emotions, feelings and fears.  I went to a "cancer institute."  I walked up to the front desk and AA style stated "Hello, I'm Sarah and I have ovarian cancer." Response: "When will you complete treatment?"  Me: "Never.  I have persistent ovarian cancer.  I will be receiving some type of chemo for the rest of my life." Response: "I'm sorry our services are only for people who have reached remission or been cured.  You can fill out our papers...but...I don't know..." Me: "Can I have the forms then?"  Response: "Sure they have a return envelope inside." Me: "Can I just fill them out now?" Response: "Sure?"

Okay I dig up the most terrifying words I ever have to say to anyone.  I expose the weakness that I cannot overcome...and pretty much I get slapped in the face.  WHY IN THE HELL WOULD THEY NOT HAVE SERVICES AVAILABLE FOR THE FIGHTERS?!?!?!?!?!?!  I need counseling.  I need a nutritionist.  I would love to have a personal trainer.  Did I say I need counseling?!?!  
Another much smaller place where that the fighters are overlooked is on the NOCC Break the Silence Ovarian Cancer Awareness Walk participation form that I fill out every year.  There are 2 bubbles...SUPPORTER...SURVIVOR.  Well it has been made crystal clear to me that I am NOT a survivor...but I am not a supporter either.  I am right in the middle of the fight of my life....for my life.  I need to see three bubbles.  SUPPORTER.  FIGHTER.  SURVIVOR.  I need the fighters to have neon green shirts.  I need to find other women like me.  Women who may not ever reach a finish line.  Women who are a frustrated or maybe even as angry as I am.  If you can't help me as a survivor because I won't ever be one...then make another group...create a place for me...I know I can't be the only person in this place.  So even if the NOCC won't give me that bubble on the form.  My team will have neon green shirts.  They will be have the word FIGHTER as big as I can get it on the back, and I will hope other fighters will find me and we can talk.  Then I won't have to be alone in this.  This disease is too sneaky...and it has been creeping up on too many young women.  I will wear my neon shirt and hope to find kindred spirits...sisters...who can help me make tidy piles of the mess of emotions in my brain.

This on the front...fighter on the back...neon green...
blind you green shirt!

Anybody reading this know how I can find these ladies?  How I could find a real way to reach out to other women in my position?  I feel alone...and with that lonely...I am surrounded and cradled with love, affection, prayer, and people to make me laugh..but I am also alone. They aren't walking this road with me.  They are by my side watching me struggle...and if I can create a network of women who can help each other because they have been where I am.  Or HOT JAM if I could help someone because I have been where they are now.  I needed a purpose and now I have one.  I am a FIGHTER...that does not mean that I should be excluded from the help people get when they have crossed a line into survivorship.  I am living a type of survivorship...I am trying to figure out how to live the fullest...most amazing life I can...surviving everyday with cancer in my body.

I love that there is a ovarian cancer awareness colored muppet
ROSITA on Sesame Street.

So there it is in written form.  I am thinking about putting it on YouTube.  I will need to be having an amazing hair day for that to happen...and I might need to actually bust out my makeup.  I know I can reach my friends with this blog ...and maybe they can reach their friends, but that isn't enough.  I know how many things I have discovered on YouTube...none of them cancer related, but learning is learning ( I mean were you born knowing how to use liquid liner?)  With the right tag maybe that would be my key to finding the support I need and being the support someone else needs.  Joan Katz started her breast cancer center because there was NOTHING for her.  Maybe this will be the thing I can start because there is NOTHING for me.

Thanks for reading my rant,
I love each and every one of you to the moon and back!

Sunday, July 22, 2012

little things

thanks for...naps...days with the bug...Adventure bed!

Saturday, July 21, 2012

hey there...

i didn't disintegrate.  I've been absent because I didn't think I had ANYTHING worth saying.  I forgot something.  Everyday...I have something in my life that deserves a silent thank you . So I am back to that.  I will be posting everyday...with a thankfulness thought.  These thoughts will be at least one word...I Promise...and I may post several times a day...but I promise one word a day.  PHEW!

thankfulness day 1 - tiny brackets.

to the moon and back,

Explanation coming soon...