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 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 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 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 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 and all the people 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 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 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 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 that I can be here in the best way that I can enjoy all the wonderful things around 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 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.

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.

1 comment:

  1. Hi Sarah, Sorry you had such a bad experience at MDA but glad you have a loving and caring doctor in Fort Worth. You are in my prayers daily and our church is praying for you also. I sendt your email to a lot of good people who said they will pray for you and hopefully send you emails of encouragement. We missed seeing you at Avery's party. Hope you and Robin can have a wonderful trip at Spring Break. She is getting so grown up and is so beautiful. I told her she was almost as tall as me but then again that isn't saying a lot since I am only 5'3" LOL. I am here if you ever need anything other than prayer. Have a blessed day...In Christ...Sheila B (Gabby)