Showing posts with label MD Anderson. Show all posts
Showing posts with label MD Anderson. Show all posts

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.



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!


Wednesday, January 11, 2012

Thankfulness...Day 123

Let me start by saying I am not a person who believes I am better than anyone else or thinks that I deserve different treatment based on who I know.  With that being said today I am very thankful that my parents know people who are willing to ask for special treatment.  I made an appointment at MD Anderson for February the 7th...I knew that I would have to delay any type of treatment until I had this appointment.  The fact that my appointment is almost a month away placed a knot of worry solidly in my belly.  Since my diagnosis I have not gone more than three weeks without having chemo...and that was when they were infusing the big drugs.  Now here I sit with no toxic materials coursing through my veins and instead of feeling blessed and at ease for the break...I am tense and extraordinarily worried.  So my Dad has contacts...he had some strings he could pull and pull them he did.  Yesterday I had a name and a telephone number for a board member at MD Anderson.  I called today and she called on my behalf.  SO far I still have the same appointment date, but at least the wheels are squeaking in my favor.  I need all the good juju I can muster sent to the powers that be in Houston.  It would alleviate lots of worry for lots of people if they could find a spot for me before the 7th.  No matter what I have done all I can do to find the best treatment option...find the newest way to seek and destroy all the nasty cancer cells in my body.  That's all I wanted to say...even though I don't like asking for special treatment...I am elated that there are people who love me and have no qualms asking if there is any way I can go first!
love you guys to the moon and back!
Sarah


Saturday, December 31, 2011

Hello 2012...

I made it!  I have been told on two occasions so far this year that I "don't have enough cancer" to be included in some things.  My christmas decorations are already down.  I have inspected the continuing ed catalog for ways to educate myself this year.  Then I decided I needed a plan.  I tend to fritter my time away without a plan.  So here are the resolutions I have made for this year.  
1. Work harder to enjoy the now...because there is NOTHING I can do about the later.


2. Yarn Bomb Something...I'm wondering which tree or bench on campus might need a new scarf?


3. Buy a convertible...or at least make really good friends with someone who will let me drive theirs on sunny days.  I will feel the breeze blow through my stubble at some point in 2012.


4. Take a photography class...I would love for the pictures I love not to be accidental.


5. Travel more...I have a nasty case of wanderlust.  My goal is to see at least 2 additional states this year.


6. Make my bed everyday for at least a month...I hear it takes 30 days to create a habit.  Maybe if I make my bed for that many days...I will actually be able to make it everyday this year.  I do love how my room looks with the bed made.


7. Make sure my shoes make it to the closet.  It is truly amazing how many times they stop short of the floor of my closet.  I have found them in the kitchen...den...office...bathroom...under the chair in my bedroom...even right outside of their closet.  Hopefully this year they will make it home every day!

I typed in pile of shoes and this came up...too precious!
8. Take a train...somewhere.  Probably Austin...but maybe


9. Make sure I don't lose touch with Robin...create outings and require her presence.  Even if she makes that sulky teenager face at the start...past experience shows she will be my giddy little girl by the end.


10.Organize at least one Family Craft Night/Day...2011's Tie Dye Party was a hoot and a half...any suggestions for this year?


11. Go to the botanic gardens at least one time each season.


12. Complete my Pay it Forward Challenge.  Make sure that at least once a month I complete a crafty project and send it on to one of my winners.
Hopefully I will be able to keep myself on track and finish each of these resolutions.  I have thought up a charm to add to my Brighton bracelet for each completed task.  Welcome...Welcome 2012...I am sure this will be my year!
to the moon and back,
Sarah