Sunday, February 26, 2012

next step

Well so much has happened since I posted last.  I went to MD Anderson...I had several weeks of feeling amazing...then I have had a week of feeling pretty crummy.  
First....the MD Anderson trip.  I had made a special place in my brain for that trip.  I really didn't think they would have some ground breaking new treatment that would cure me on the one visit...but I had secretly hoped that they would have SOMETHING.  I took tiny batman and my little Robin, my mom, one of my  red headed aunts, and my dad.  We all sat in the waiting room hoping for the best.  My mom went with me into the examining room.  It was nice to have someone there to talk to...someone to fill the time while I waited for the wonder doctor.  Strike one for MD Anderson...I hear the doctor in the hallway..."Who put THREE people back here?"  
"Your nurse Dr. Frumovitz."
"Well that is NOT cool...what am I supposed to do with THREE patients?"
As I sat in my room it hit me..."What an ass."  What will he do with three patients?  What will I do with persistent ovarian cancer.  I mean really you are in the hallway, not a sound proof booth.  You are in the hallway with three patients waiting for a miracle behind each door.  My opinion of him was ruined before I even saw his face.  He sent his fellow in to talk to me about my history.  The complete cancer journey had been scribbled on the back of a sheet of paper.  almost 2 years of my life condensed into scrawl on the back of another (probably more important) piece of paper.  They didn't do any blood work.  No scans.  They do have a speculum with a light on top...kind of like a fancy spelunkers helmet.  The fellow did a pelvic...the jackass doctor did a pelvic.  Then they told me to get dressed and we would talk in the conference room.
I dressed...already feeling like he had written me off...like I was so not worth his time.  I went to the conference room where my mom, my dad, and one of my red haired aunts waited for him to provide the miracle.  I already knew there was not going to be a miracle.  HE lined out what we would NOT be doing first.  No surgery...no chemo.  He let us know that I could observe closely...start treatment when my CA started to rise...start treatment when I had a measurable mass...start treatment when I started having symptoms.  In his experience the length of the patient's life was not changed much based on the path they chose.  He also told us to call or email before coming back to MD Anderson...I mean he wouldn't want us to waste a trip.  My dad piped up with..."I don't think this was a wasted..."  Jackass doctor..."Oh no this trip wasn't wasted...you got to see me."  Gee really...I mean really that is what you choose to say?  So we headed home and I headed to my doctor.  The doctor who treats me like I am her only patient.  The doctor who I know will keep fighting until we get the best result we possibly can!  It felt good to see her...to be able to tell her she kicks MD Anderson doctor's ass up and down the street.
I left her office with an extended chemo break, and her blessing to enjoy my time without worry.
That left me with a couple of weeks to enjoy the weather...my daughter...work and all the people there...to finally feel like myself again.
Last week...I woke up on Tuesday with a twinge in my right side.  I took some Motrin and headed to work.  The pain progressed some so I called my favorite oncology nurse and she scheduled a CT scan. I drove over to Baylor imaging drank my contrast and settled in for my scan.  I got the results on Wednesday morning...they were scary...I cried...Oh...I almost forgot...my mom had gone to Beaumont to stay the week with my dad.  I decided not to call either one of them until I knew something.  I missed my mommy when I got the results of the CT scan, but my other red headed aunt was present and he loves me almost as fiercely as my parents.  She did and said everything right.  She helped me make it to the doctor on Thursday...she held my hand...she prayed with me.  I'm really glad my parents got to have their week together with a little less worry.  My doctor came into the room with my scan in hand.  There are a few new spots to watch...no real reason to explain my pain.  So she told me it probably is the progression of my disease.  I asked if there was something I could do...to keep the progression at bay, but still feel go enough to take The Bug on a fun trip for Spring Break?  She suggested a med usually given to breast cancer survivors.  The only real side effect...HOT FLASHES.  I am totally familiar with those and I can totally handle it!  They should also subside after some time on the med. I have had the ever present thought 1MT1MT...I will keep doing whatever I have to do one more time...so that I can be here in the best way possible...so that I can enjoy all the wonderful things around me...so that I can take trips...see movies...enjoy whatever God places in front of me.  I am so thankful for Josh Sundquist and YouTube for bringing 1MT1MT into my thoughts.
So now I am starting a new med...hoping it will keep my CA stable for a while so I can continue enjoying my time.  My side hurts less today...and for that I am grateful.  That should bring everyone up to date.  I am happy...as healthy as one can be with the big C...and ready to start planning our trip to St. Louis.  Anyone have any suggestions about places to go and things to see while we are there? 


To the moon and back my friends.
Sarah


Adventures of Tiny Batman!
get with it Robin...waa waa you don't have hands...
whatever put the pieces in place with your beak!


geez this is so much paper...and I can't read!

Will my footprint work as a signature?

You have to put your feet where??
And then he will put his hand WHERE?!?


Are you comfortable?  I could fold you up like a pretzel.
please ignore the surgiLUBE behind me.



Wednesday, February 8, 2012

Every So Often I need a Reminder

Today was one of those days.  I spent most of the morning curled up under the covers hiding from today. I made the trek to MD Anderson (I post about that later), I didn't get any great news...and I made me mad sad and just defeated.  My Mom went to Jazzercise and I had wanted to get up and go with her...instead I hid under the covers and slept.  She came home from Jazzercise and I was still asleep...she woke me up and let me know my Brother and his family would be at Chuck E. Cheese's and she really thought I should go.  Instead I stayed in bed and checked my email...I did finally get up and get dressed to go see my favorite niece and nephew!  It was good...being with family always makes me feel better.  They were so cute Little Man shoving tokens into games getting half way finished and running on to another game...leaving his sweet daddy to finish up.  The Little Lady walked all over the game area...that's right walked.  Walked like she had been doing it forever...they grow up entirely too fast.  She is also pretty good at the open mouthed baby kisses (nothing better...in my opinion).  Lunchtime fun had to end at some point and then mom and I had to pack up to come back home...so the defeated feelings returned.  I rage against them...I try so hard to ignore the bad stuff and cling like mad to the good...but today the bad stuff was winning.  We drove up into the driveway and parked the van.  As I got out of the car I could hear all kinds of rustling in the tree beside our house.  I stood for a minute to watch the birds in the tree...it didn't take long to realize the tree was filled with ROBINS!  Like the movie The Birds filled...if it had been any other type of bird I probably would have made a mad dash for the house.  I have never noticed that Robins particularly loved that tree before...I think it was a little message from God right when I needed it. The Bug was so far away and she loves Robins...God filled that tree with our favorite bird to help quiet my soul.  To bring me a bit of piece in the middle of all this turmoil.  A reminder that he is with me at every step holding me up when I need it...standing quietly by my side when I have to be alone...and raging against the defeated feelings with me.  I walked inside...picked up my camera and then went back to the tree to enjoy the moment.  I loved every second of watching those birds inhale berries off each branch.  I loved watching them take flight if I made too much noise.  I felt happiness, excitement and peace with every click of my lens.  I hope everyone else had at least one moment when they felt complete peace today!
To the moon and back my lovelies!
Sarah


the Robin Tree...










Sunday, February 5, 2012

Happy Birthday to Mimi!


Yesterday was a full and fabulous day!  The Bug auditioned for a spot in the local fine arts school.  She memorized a monologue from "Little Women," and she did a great job.  I wasn't allowed to be in the room while she auditioned (VERY nerve-racking for mom)...and the little girl who came out as Robin was called back was in tears.  She told her mom that she remembered 2 lines and then just stood there in the middle of the stage and cried.  I spent the rest of the time Robin was gone praying she would remember her lines and perform it as well as she did when she brought her Mimi to tears.  About 4 minutes later she came bouncing out...confident and very pleased with how she did.  As a special reward for all her hard work we went to Brighton.  She chose two charms and the necklace and then I bought her the star charm...to remind her that she will always be my star.


We spent the afternoon decorating Maa's house and making cupcakes for Mimi's birthday.  It was great to get together and celebrate as a family.  All my aunts and uncles were there and even a couple of cousins.  The Bug spent a lot of time making the table look special for her Mimi.  We had party blowers and my little precious lady found new and hilarious ways of using the blowers.  All my mom's presents were a big hit, but I have to say a special thank you to Maa.  She let me give Mimi the perfect gift.  She told me that Mom really wanted a pair of black and white saddle oxfords...so I got to give that gift.  She squealed when she opened my card.  My parents usually run out and but something whenever they want it...so I was lucky to weasel my way in before she treated herself to the shoes.  
So...I hope today follows in the footsteps of yesterday.
to the moon and back,
Sarah
pics and a video!





video

Friday, February 3, 2012

And Away I go....

So next Tuesday is the day...well the first day of my appointments at MD Anderson.  I had a meeting yesterday about the clinical trial available to me here in town...and I think I had been living in a small state of denial.  I mean it isn't like I forgot I have cancer...I just think I put in in an unreachable section of my brain and made full use of my month off.  That all came crashing down around me at the meeting yesterday.  It was hard to sit and listen to all the things that are VERY UNLIKELY...but might have some rare chance of happening to me on the clinical trial.  That indeed they did put the words in the release that "This may not be at all beneficial to you, but it could help many cancer patients in the future." This is my most viable option...a treatment that may or may not be beneficial to me...may or may not cause me to have unexplained infection around my anus...really MY ANUS...geez.  Oh well...a girl's gotta do what a girl's gotta do...
Today I picked up my PET scan and CT scan results from Texas Oncology to show off at MD Anderson.    So I have my head up and maybe even a little hope...if nothing else I will get to see my brother and his adorable little family.  I hear that their tiny Miss is walking everywhere...and the Little Man is still totally into dinosaurs...RAWR.  They will be my ray of light...I put up with all the poking and prodding and I get to play with my favorite little people!
So there's the update...to the moon and back friends,
Sarah
pic of the day





I love these colors....and I think camels are cute!