Onward!




"DAILY BEE ROCKS!"











' 

   

"Dear Cancer, maybe you don't know who I am!"

My Chromogranin A marker was 95 from my first treatment ya'll!!!!!! From 514 post surgery. For those of you that don't know what that means??? It means I'm KICKIN' CANCERS ASS! Who said you can't win the lottery twice? All the doctors did. Dr. Lin said don't get to excited yet, but I couldn't help it:) So tomorrow for treatment #3 I will welcome the needle;) — with Shanna Claire Saulsberry at Seattle

Kermit Juice

Kermit Juice {no frogs were harmed in making this juice}

    So, we have not been on here for a few days because we have all been concerned with Sara care.
The chemo is keeping her pretty much in bed.  She has not be able to go to work or do much of anything.  Being sick is part of it, but mostly it is exhaustion. By the time she starts to feel better, it is time to go back.  As far as appetite, well you are lookin' at her 'T-bone' juice right there.  She tried to eat regularly but her system made it very clear last night till one in the morning that she better watch what she eats.
      Whether this means the chemo is working or not can only be determined by the tests when she goes back to Seattle. This Thursday, she will go back over for another treatment, then have a week off.
    It turns out that will be the week of her hoedown, November 3, so she will not be sick for that.  She is planning a big speech, which I am not helping her with.  So it probably won't be very funny.  {just kidding}.
    I have been staying at the purple house and making sure she drinks her juice and eats her blended soup. People come and go all day long and keep her distracted. {"Look at that bird!!!!"} Everyone has been so helpful and wonderful and supportive.  Lauren gives her acupuncture every other day which has helped a lot.
     The hoedown is going to be a super event as there is so much going on and is growing bigger everyday. Git out cher cowboy hat.   
     We can't wait to hear what Dr. Lin has to say about how the treatment is going. Remember, this is not just about Sara, this treatment is going down in the textbooks.
    So the recipe for this Kermit Juice is Shanna's and you will have to ask her. I can guarantee it is not an old family secret.
    Thanks everyone.


posted by Colleen

The Smallest Things

Sara was very perky when I went to pick her up from the Infusion Bay at SCCA (everyone gets their own little room and Sara got a bed this time since she was infusing for 8 hours) but I made her sick when I got there. "Is it my outfit?",  I said. She has finally managed to dress me as her twin and I was even wearing her vest. "Do I really look that awful that I make you throw up? It's like looking in a mirror! A fun house mirror! Blech!" I teased. Yes, always tease nauseated people who still have a sore abdomen from surgery, but just a little bit. After laying still all day just getting ready to leave was causing some side effects.

After that she did really well besides a bad nonstop headache and a little nausea even after the 4 different anti-nausea meds she received. They really have the chemo thing down these days and Sara received 4 hours of fluids and medications before she even got her poison. We wondered briefly about the other "big punch" chemo and it's side effects then decided to not think about it anymore.

Sarah C, Steffi, and Mark drove all the way over Sunday, ate some Thai food and turned around to drive all the way back so we could get Sara's car home. Thank goodness for the wonderful people in this world. Sara kept expecting to pop up each day since then but the nausea and extreme fatigue are keeping our girl resting almost the entire day. She managed to go to a brief dinner where she stayed on the couch and did a few errands today but then was rather sick when she got home. Apparently nausea can be combated in 4 different ways in the body, one way is to prevent excitement (ya know, like going to the post office) so whenever Sara is having too much fun she feels sick.

We look each day for the good things and raise the smallest of them up for celebration. We love the big amazing things too, but the more you put in your gratitude basket the more it overflows. Sara doesn't need a port-her veins are awesome! How great are the handy throw up bags that you get from the hospital! They have a handle! A new episode of a funny show when you feel sick! The cancer cafe has Cream of Wheat! We got the good parking spot by the elevator-woot! Every little thing shores us up and keeps us positive.

We are all prepped for the next treatment and have a schedule mapped out. Since this week is only one kind of chemo we are hoping for less side effects.

Lots of love to all the foot-rubbing, cozy-upping, acupunture-giving, food-cooking, dog-walking, happy-chatting wonderful friends/relatives who make Sara feel surrounded by love and support.

Sissy

From the treatment room.....

I wanted to share some excitement as I've been humming with it since seeing Dr. Lin yesterday, I was sooooo excited I forgot that today I am getting intervenes poison soaked into my veins from my old friend Debbie Downer.

I've said a few times now to Sarah, every time I see Dr. Lin or Dr. Park I feel like I'm having my Cancer Class.  At the beginning of this whole cancer thing Dr. Lin said I'd become a doctor of my own cancer, I don't know about that, but the neurotransmitters are blinking in my brain and I can actually converse instead of just listen to "Doctor Talk".  Although without the doctor Sissy and I discovered our "Doctor Talk" has a lot of terminology like "do-hickies" and "thing-a-ma-jiggers".

Cancer is complicated, every person has unique genetic make up, then you have these weird cells that do weird things and have their own unique genetic make up, then that becomes unique genes in itself, then you have something really unique.  This isn't like a pretty bag or scarf, or artwork on the wall, its shitty unique cancer cells multiplying at high rates in your body, feeding off the treatments your dosing yourself with to stay around a little longer to enjoy this thing called life.  Certain types of cancer's the genes have been identified so appropriate drugs can be used for treatment, some cancer's they don't know.  Regardless they all suck.  We have to figure out what genes these are and what will STOP them from dividing and multiplying. 

Well what is that you ask?  That is called UW-OncoPlex, a cancer gene sequencing panel.  This is basically mapping out your tumors genetic make up so they can know what genes are the "bad" ones and target them by drugs they know to work.  I view it like putting my cancer in a pee-tree dish and dosing it with different drugs to see how it reacts and which ones will kill it.  (that's how I visualize it, it's my inner doctor mind). It is something that has been researched in labs and last year Dr. Lin joked, "If you had $$$,$$$,$$$ you could map your cancer's genetic code", well that time has arrived.  The new testing just got approved in August at U of W, they have a medical assistant professor from Korea just here to head the testing, and guess who is the #6 patient to have the test done?  Yours truly:) (First Neuroendocrine Tumor patient!)

My beloved response to treatment last year had doctors in awe, "something that is written about in medical journals" as Dr. Park said, and "almost made history" as Dr. Lin put it.  But this recurrence, mutation of the cells, high grade tumors vs. low grade tumors, "we are in uncharted territory" per Dr. Lin yesterday.

So I know I may have bored you with cancer talk, and if so, I'm sorry.  But to see a doctor pretty much dancing a jig over his new testing baby that he has asked you to be part of  feels pretty good! Which by the way is TOP SECRET, Dr. Lin doesn't want us to blab about it so he can get all his patients in first, their only taking between 20-30.  But I had to tell you guys!

Well they've just hooked up the first of the 2 drugs for the day, Irinotecan, GO-FIGHT-WIN!  Pray for shrinkage, that is the goal for now so surgery #2 can happen.  I've taken up meditating to fight these things, surround them in white light, thank you Lauren Miller, Carolyn Myss and Eckhart Tolle.

Thanks to all for the continued support, love and good ju-ju:) Thanks to Mom and Sissy for keeping this up to date.  And thanks to all of the glorious people putting together the Kickin' Cancer's Ass Hoedown, I think all those involved are astonished by the family, friend and communal support. 

~Sara

                                                      A pic, after Dr. Lin's dance:)
                                                      Dr. Lin, Me and Nurse Heidi


Note from Debbie Downer and I strolling for some cocoa: Well things could be worse, poor women in room next to me has her baby that is sick from treatment and is being taken on a gurney to be rushed to the Childrens Hospital:( Did I mention Cancer Sucks?

Prepping For "Real" Chemo

It's Chemo School Eve for us over here. In the morning Sara and I (Sissy) will be learning about "real" chemo, the intravenous kind that comes to mind for most people when they think of cancer. Of course all her chemo has been real but this is way stronger and has more side effects than her oral meds and we are trying not to worry too much about what will happen.There is a 90 minute class Thursday and Friday is Sara's first treatment.

Dr. Lin wants to oversee her personally because of the fast growing nature of the tumors and is having her chemo administered weekly at the Seattle Cancer Care Center. She is staying at our house right now while she is still on leave from her surgery. She will be going back to work October 22 with a tentative schedule of working Monday thru Thursday morning, flying over to see Dr. Lin for his last appointment of the week, getting chemo Friday mornings and then flying back that evening or Saturday morning to rest for the next work week. Do you feel tired yet?!

If her tumors stay the same or get smaller she will be eligible for another surgery in about 6 months according to Dr. Lin. There is also another kind of chemo combo (really strong, he calls it the "big punch") and the maintenance drug Affinitor that the insurance just approved. Shrinking tumors!! Shrinking tumors!!

Trevor was over for a couple days and drove Sara and the dogs around the Olympic Penninsula for some hiking, Yahtzee, and (don't tell Sarah C.) cheeseburgers and pizza. The dogs got to swim in the ocean for the first time and Liza thought the water tasted a little wierd. **Twilight Warning**Avert Eyes If Necessary** They also drive through Forks and La Push to check out the vampire scenery and stopped at Sol Duc hot springs but took a pass because it was so crowded. Yicky, people soup.

See you at the next post after treatment! Every hope, prayer and positve thought is welcomed and appreciated.

Love,
Shanna and Sara

October 8, 2012

Bentley flyin'

    Sara is spending quality time with Bent and Lize before she starts a rigorous round of her new chemo in Seattle on thursday.
    Trevor will bring the dogs home and Sara will stay with Shanna to go on to her next treatment.  Will keep a posted update.
 
   



The Hoedown is happenin'.  It is full speed ahead at this time. So get ready to join in.

KYA Hoedown



This is who I am fighting for


    Well, the Dear Cancer, I am going to Kick Your Ass  Love, Sara event is in full swing.  November 3,  2012.  The  team has secured a place, the Annex building behind the Army Surplus store.  People have come out of the woodwork to volunteer sevices, door prizes, graphic design, cash in the mail, {yes, cash in the mail}, caterers, raffle items, kegs, wine and a full bar, taxi service, etc.  and.... the Miah Kohal Band!
    The outpouring of support is overwhelming.  It will be the event of the season also to show appreciation to everyone who have allready done so much.  The  team is fine tuning the details which I will post here. There will be a formal announcement posted in  flyers, radio, newspaper ads.




    Sara saw Dr. Park yesterday and was released to Dr. Lin, who she will see today and determine what trearment to do next. Dr. Park is pretty certain she will require another surgery after she is fully recovered from this last one. We can only hope and pray that will not be necessary.
      The cancer research and treatment for 2012 is done, so whatever the treatment will be, it has to be available now.  When I hear from her and Shanna, I will post again today.


Posted by Colleen

    “Ok, here’s the deal.  Fast growing tumors, need to take them down.  My bone marrow has normalized and blood count is normal, so will start IV chemo and oral ASAP.  It is a weekly regime that he wants here in Seattle to keep an eye on blood work since it is high grade tumors and want to make sure there aren’t any new ones popping up or spreading. ALMOST made history, stupid cancer! As Erin puts it, “How Rude!” Will wait to hear my first treatment date.  Will still fight for Affinator, as he wants to use that as a maintenance drug for the low grade cancer cells, which today’s doctor lesson taught me are the engines that feed the high grade ones.”

Sara's message after doctor appointment