December 20, 2012

    We were able to go to Coeurd d' Alene for chemo last friday.  We met with Dr. Kim, who is an oncologist there.  He had a conversation with Dr. Lin and said he would administer chemo in Cda for Sara and stay in close contact with Dr. Lin.  I guess they had a pretty interesting conversation about Sara D.  Sara made it very clear that Dr. Lin was her primary doctor she just wanted to be able to get treatments closer to home.  Dr. Kim said that he was on board 100 per cent and would do whatever was best for Sara. The nurses and everyone we encountered were super nice and made Sara very comfortable for the duration of the treatment. I, of course, was in charge of finding good food for lunch.  Fisherman's Market and Grill on Kathleen street.
    This is a big relief especially when I look out the window this morning and see 2 feet of snow.  Driving to Seattle would not be good for my holiday mood. 
    Also, after this last chemo treatment, I stuck around Sara's house in case she needed me, but she did not get as sick.  Dr. Lin's giving her steroids with the treatment because he said that is the best anti nausea medication.  Well, it works for that but also keeps her up all night.  And not in a good way.
So, tomorrow I will take her into Cda for the last treatment for this session and then possibly she will go on a maintenance program.  But if Dr. Lin says stand on your head and gargle peanut butter, then ok, because he is #1 in our book.  And Thank God Dr. Kim doesn't have some weird ego problem so finally Sara can be close to home but still be totally connected to Seattle.
    This holiday season is truly a time to look around you and be grateful for the goodness in people.  I know that we, as Sara's family, have counted on all of your good energy and prayers and it works. Do not ever underestimate the power of kindness.  To truly give is to not expect anything in return, and there are so many people who have done that for us.

                       Have a blessed, happy holiday and Merry Christmas!!!





posted by Colleen

How 'Bout a Nice Cup of ... Chemo? Part I

Hi, it's Sissy. Sara got some full color scans this week and they looked great so far, she is in the machine now for her last scan. Nothing was glowing and all her organs looked so pretty in color- you would be amazed at the detail of the scans-I wish we could have a copy so we could look more closely.

In the good news/bad news category she has to get more chemo. We had been talking last week about her scans and I was nervous that she would be going for over 4 weeks without any treatment. She told me to shut up, that was scaring her but then called Heidi to remind Dr. Lin of this and that the scan was taking longer to schedule. That was when he wanted to schedule a chemo dose so Sara begged Uof W to squeeze her in for a scan-please, please, please! Alas, it appeared that put a bug in Dr. Lin's brain and he decided she was getting more chemo anyway since most patients get 4 whole treatments not 1 and 1/3 like Sara did.

It is good news because she is so responsive to this chemo and it definitely makes me more comfortable to know we will be hitting any little bastard tumors that are not detected by even the fancy scan (the scan only detects a clump of at least 1 million cells). Sara is pretty upset because she feels so great and was planning on going back to work next week but now is in for at least 3 weeks straight of being sick. She was hoping to work Christmas Eve so other people wouldn't have to since she was getting surgery last year at Christmas. Also, she is getting anticipatory nausea as soon as she heard the news and can taste the yucky chemo taste in her mouth and feels the weighted blanket feeling (like the lead blanket at the dentist, she says). She knows in her mind it's good but her body is trying to run away from what's coming!

Dr. Lin is still pondering her treatment for after chemo. He is not sure which card to play for this round and he has to make this all up as he goes along. This experience has definitely shown there is more to treatment (of a rare wierdo cancer anyway) than following a flow chart! We've learned that the timing and sequence of treatment is important because you don't want to play a card too soon instead of saving it for a better opportunity.

I can't stress enough to anyone within the sound of this blog - second opinion at a big teaching hospital!!!!!! It isn't the doctors fault at a smaller hospital, they just coudn't possibly know all this new info from the past 5 years. The nurse at the last infusion said they get patients all the time who were told to get their affairs in order by a rural or small hospital, then come to SCCA for a second opinion and get treated. Sara's first doctor was taking this approach -that chemo was useless -it's over. Even at the last appointment, as my sister referenced last post, Dr Lin told us the doctor at the UW in March/2011 wanted to send Sara to hospice. Anyone who saw her liver got "the look" on their face but Dr Lin said no she would get to try chemo. I can barely think about it now because it makes me a little lightheaded. We were so lucky our path somehow led us to Dr. Lin!

A little Part II when I get to the infusion bay later!

                                                     

Two High Fives

Two high fives with Dr. Lin! Chrmg A at.... Drum role please...... 43! Scheduling an octreotide scan to see if we're dealing with live disease vs scars.... It's the glowing one:) This will determine if surgery to remove the bugger on the outside of the liver that's been with me since the beginning needs Dr.Parks precision or if affinitor can take it on alone. we will have a better plan after the scan. My scan from yesterday attached for veiwing pleasure. IV chemo I off the table:)))) for now, I'm done! Dr.Lin shared some insight on what we all already know about the drug industry, how it works against us sometimes, and we took a trip down memory lane of when this all began, it was hard to listen too, hospice was brought up and sissy and I are still crying about how greatful we are for Dr. Lin. Love to all ~S

Aftermath

"SPEECH!"

    Well, we got Sara over to Seattle for her treatment.  After the event she got super sick and we had to call and make sure she could get her chemo treatment. As long as she did not have a fever, it was a go.  So, I got her to Moses Lake, driving through the worst first storm of the season, and met up with Shanna who took her to her appointment at seven a.m. Friday.   The chemo treatment was the big one and on top of Sara being sick anyway, she stayed in bed and as of today, she is still at Shanna's in bed.
    When she went to her Thursday doctor appointment, he said she was in too weak of condition to get another treatment. They decided to give her IV's to hydrate and get some nutrition in her. Shanna said she probably lost 9 pounds in one week. But damn she looked good at her Hoedown!
       Sara will come home soon as possible, then not have to return till November 27. Then they will decide whether to continue the chemo or start the affinitor. {I cannot say that word out loud for some reason, my country western accent kicks in and it is 'AFF in aaator'.}
    So, I for one hope she regains her strength fast. I will be at the purple house taking care of her along with everyone else who is taking care of her. Takes a village my patooie, it takes more than several states and a lot of counties, but Sara is kicking cancer's ass and we have the T-shirts to prove it.
    I will try to post more frequently to keep you all updated. By the way, Nurse Erin broke her ankle!
Slipped on some ice. Stay tuned in here for interesting stuff.


                        Love all you guys. That Hoedown energy should be bottled and sold.

Sarah Centorbi-Hess speech

  

posted by Colleen

Whew!

    The Hoedown was a huge success and is still winding down. So many people did so much and all came together to create a fabulous fundraiser for one of Sandpoint's favorite people. I am so glad Sara was not doing chemo that week so she could go and give such a great speech. Sarah Centorbi-Hess said it all. There is no way to express enough appreciation for everything.
    This next week Sara will go to Seattle and get a doozy of a treatment.  We are trying to get the treatments close to home and eliminate so much travel, but so far that is not happening. It is just better to go there and have Dr. Lin see her in person. Will try to organize some good pictures for the event and get them on here. Obviously, Sara is resting.
    Thanks a hundred times.  Love to all!



posted by Colleen

3 Chemos In/Fundraiser

Well, that was a whirlwind!

Sara flew over every Thursday for Blood Draw/Dr Appt, Friday Fun Day was chemo and sleep then finally awake Saturday night for a couple funny shows. She has been pretty much horizontal the entire three weeks with Thursday being the best day and has experienced the usual symptoms. She counted up and realized she had not driven a car for 6 weeks since she drove herself over for surgery. She has developed a pretty strong aversion to pills but luckily we got a Zofran patch (nausea) and finally figured out Ativan could be crushed up into something since it is tasteless. Think giving Fido medicine.

I am not such a good nurse since my sister's willfulness is MANY times greater than mine plus she has her Woo- kind of like her own personalized Jedi power. Since my Woo is basically negative 4876, she wins a lot. I am just thankful to get my "turn" to take care of her, there is nothing worse than being far away from someone you love who is really sick and needs help.

So, yeah, it's good to be optimistic about chemo effects since they are not in one's control anyway, but Sara obviously did not make it to work at all like she planned. She is on leave until ????? We don't know. Dr Lin was happy about this and wants her to stay calm, he thinks her tumors get cranky when she is all stressed out.

Her amazing numbers (514 to 95 for tumor markers) makes it all worth while and we can't wait to see the next test since that was only after ONE treatment! Her all time low was 77 when all the doctors "oohed" and "ahhed" over her chart. She has a week off which is just perfect for...

Kickin' Cancer's Ass Hoedown!!!!!!!!

Lots of stuff to bid on, get your Christmas shopping done early or maybe win a door prize or try the raffle!! Food, music and lots of fun (you know it!). Be there Saturday Nov 3rd 5:30 to ? at the Granary by Evan's Bros. 524 Church Street. The building that will be shakin'! Lot's of handsome cowboys and lovely cowgirls so wear your boots!

Here's the FB page with more info:

https://www.facebook.com/events/264502983670875/

Thank you everyone! See you Saturday!

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

September 30, 2012

    Sara is doing very well. She is planning her next visit to Seattle early this week and will see Dr.Lin and Dr. Park. {who I hope is not still mad at us. Yikes!  You think being yelled at by the principal is scary!}  Sara's recovery should speak for itself.  Shanna will go to the appointment with her this time and remember to record it, like we always do. After she sees the doctors, we will have an idea of what to expect next. 
    The benefit is tentatively scheduled for November 3rd.  Details are being hammered out by a great team who will pin it down later in the week. I am sure it will be the event of the year.
Stay tuned in for more info. I will post later after the Doctors appointment. See you soon!


   

 


Insurance companies

    So, Dr. Lin wants Sara to take affinator, a new drug for cancer.  It was just approved because Steve Jobs pushed for it's approval.  Dr. Lin sent several requests to get it pre-authorized.  Dr. Lin writes books on cancer.  Well, the insurance company sent him and copy to her a denial letter today.  'Not medically necessary'.  So how do you deal with something like this?  It is a drug specifically to treat neuroendocrine tumor. I am only gonna say this 300 times, insurance companies suck. We will keep working on this.
      Meanwhile, Bentley went for surgery today to remove a thing on his leg.  He is recovering nicely and sharing the surgical procedure experience with Sara.  Seeing Bentley on drugs was pretty funny.
"You want some munchies with that, Bent?"  Then, Sara went to pay and her most wonderful, uncomparable, beautiful sister, Shanna, and super fantastic brother-in-law, Wes, had paid the vet bill in full.
    I am making a turkey dinner. All that organic stuff has made me sick and nothing smells better than a turkey dinner on a fall day. Duane, your potatoes are baking as we speak.
    Sara is resting and eating and planning her post op appointment next week.  There is a benefit in the works.  Details in the making.  Thanks to everyone for your care and concern.
    

                  love ya !
                  Colleen here

Enough about Sara, back to me...

    Sara has taken herself off vicodin and is only taking ibprophen.  She walked down to the Farmer's market this afternoon. She looks and feels pretty damn good.  I feel awful. Totally woke up sick. I will go home tomorrow when Jerry can come get me. Sara was making me scrambled eggs this morning. I am crashing here.  "I'll have what she's having.........."
    Thanks to Duane for bringing over the most fantastic vegetables from his garden. We are depending on nutrition therapy right now.  The Max Gerson therapy claims that food can cure degenerative disease. I listened to it all the way over to Seattle and all the way back. {what happened to my romance novel on cd?}  It is amazing. So we are going to use that as a guideline.  So stay tuned, we are working on a date for a benefit party. Back atcha real soon. Thanks to all!

                 Purple House

 Colleen 

Home to Purple House

    Just a quick update.  Got Sara home okay.  Lauren allready gave her an acupuncture treatment and she is sipping healthy concoctions.  She has her phone alarm set for her medsVicodin is a barking dog alarm so thanks to pavlov dog theory,  I will now associate dog barking with vicodin.
    Her dad came up last night from Priest River to make sure she is okay.  We will be staying with her till she can get around good on her own. So far, so good.  This recovery time is very important for the rest of the treatment she will recieve post op. Which will be determined by Dr. Lin in a few weeks.
      Will keep on updating blog but have to find what is rotten in the frig.
Thanks to everyone!!!!!

"Long as I can see the light..."           

    Getting ready to go. So just letting you know , Sara is doing great. Passed all discharge
qualifications.  Beautiful day to drive home. Shanna made a delicious frozen cherry, chocolate protein smoothie. OMG it is good.
     "We're on our way home.  We're goin' home."
             Meet ya at the top! 

  Colleen

Discharging from the Hospital

    Don't have a lot of time, but the morning team said we are working on getting Sd discharged.
After yesterday afternoon, we are not disconnecting this IV of dilaudid untill we are sure  the oral pain releif works. They wanted to re insert the epidural, but Sara said no. That means you just go through the whole thing again. They call it 'breakthrough pain', Sara calls it 'son of a g$%^&m^%$holys^&*'.  It was bad and they did not address the pain very well plus a communication gap of 45 minutes. I finally went to the nurses station and said where is the intraveinious dilaudid?  They go 'oh, is she supposed to have that now?'  Super frustrating. Heads up, schedule surgery on tuesday so there is plenty of time before weekend. Dr. Park came by again and was very agitated about the pain management.  He said she should be up and walking, which was impossible with her pain level. Then he threw her out of bed and out into the hall to start walking.  I ran after them barefoot and a nurse yelled, get your shoes on! You don't want to be barefoot in here! I said I am trying, Dr. Park is yelling at us! Sara was about ready to puke. Anyway, needless to say we walked 35 times last night. Whew.
    But we have it under control, I think, and are getting her in first shower for 4 days.  It is a good thing you guys only have to look at pictures. She ate pretty well this morning and is in good spirits.
I can hardly keep up with Sara even after she has had major surgery.
     Will write later, gotta go. Ride on!

 Colleen

Breakfast in Bed

    The team came in this morning and removed the dressing from Sara's incision. They all went ooooo..ahhhh" meaning they were very impressed with Dr. Park's handiwork.  It looks super good.
    Sara is sipping on Shanna's vegie juice and  we have ordered some food for her to eat. She also has eaten fresh mango and is trying another cup of coffee.  Before you  can be discharged, you have to pass air, {Shanna and I were happy to demonstrate}, walk around and not require being hooked up to anything.  The team said they were very pleased with her recovery progress and will work on getting the epidural out today.  If she meets all discharge requirements, she may possibly be released tomorrow.
    They commented on her active role in her own recovery and the support she is getting from family and friends is 'huge' in her quick recovery. So don't think you all are not 'doing anything'.  She is still in pain and that will be our goal today to manage that so she can be comfortable after leaving the hospital. She will be giving herself heparin shots to keep from getting blood clots. SOP.
    This hospital is #1 in the state of Washington. It truly is an amazing place and the team in here this morning said Sara could not be in better hands with Doctor Lin and Doctor Park. They both have the total respect and admiration of everyone on staff and of course, us!  We are super lucky to have landed here after some awful experiences.  THANKS!

Colleen

'Flashionable', even in a hospital gown.

   


Still smilin'







Recovery, Day 2

Sissy here.

I was able to hang at the Dub for most of the day. If you've ever been in the hospital you will understand we spent a fair amount of time making crude jokes about body functions and laughing our heads off (be glad we don't imbed any videos). Sara cannot laugh because -ouch!- but she smiled and was distracted. It really takes an incision and 4 tubes hooked to Debbie Downer to keep that girl in one place.

Dr. Park came in the evening again and helped us out with the hospital "code". He couldn't believe that Sara was still getting a morphine family drug more than 24 hours after surgery. He coached us on how to get the pain specialists to give Sara Toradol, a really strong NSAID, for her pain. Apparently it can cause bleeding right after surgery but he gave permission as her surgeon for her to have it Friday morning. When I left at 8 PM, still nothing (!) but now we know we can push hard and be "the squeaky wheel" as Dr. Park said. They should have a course in "Hospital" in school. It's not something you want to learn by trial and error.

After laying in one position for 24 hours we got Sara up and she went for 3 walks, by the end she was "SISSY!"ing me to get that IV rolling thing moving, I was going too slow. She got lots of head and leg massages and we did a little surgery of our own on her tank top so she could get out of the ugly gown.

I am staying home today because the kids are going to go bonkers after so many days without mama but I already miss helping out my sister. It is rare to have her stay in one place for so long and be able to hog her attention. I am sure Mom is laughing right now since the patient is probably more awake today!

Thanks for your comments and messages, it really helps.

LoveYouMeanIt,
Sissy

Recovery

This morning Sara woke up itching as the morphine {fentanyl} makes her itch really bad.  Her pain is being controlled through the epidural but she tries to not push the button because it creates the itching. So, the team of doctors came in at 7 AM to discuss her and said they would prescribe something that was not in the morphine family.  She only said 36 times that morphine made her itch and she did not want that to happen if it could be prevented. Whatever.

Last night at 8:45, Dr. Park came in to see Sara on his way home. Wow. He seemed really pleased with the whole surgical prodedure and explained it all to Sara what he had done. He said he was surprised how fast it went and so he had time to do a little fancy needlework on her. She now has "Home Sweet Home" in cross stitch on her liver. He said the tumor on the lymph node was attaching itself to a main artery and that could have caused some major issues, but it peeled right off and her pancreas and artery are intact.

They are coming in a few minutes to get her up and walking. She has already eaten whole pureed organic delicata squash Shanna made and Shanna is on her way with a super duper green veggie  juice straight from her Champion juicer. Getting Sara up and running is the main objective.

Shanna's Kitchen
Champion Juicer
{plug}
 

The nurse in pre op said "you have such good blood pressure and a strong heart. You are like Wonder Woman!"  So I said "maybe she should be Wonder Woman for Halloween".  So then we had to look up Linda (not Evans, that is Dynasty).  I know, I know it is Lynda Carter.  Anyway, after the surgery, when Dr. Park as explaining it to me and Shanna, he commented that Sara was so strong she was like Wonder Woman.  So there it is-two times in one day.

She is in pain and staying knocked out as much as possible.  But in a minute she is going to try to get up and move around. She is doing very well considering the traumatic surgical procedure.
 
I will keep this  updated as I cannot call everyone, obviously, and have to be quiet in here while she is resting.  I only leave for 15 minutes at a time. Good coffee down on floor 3.  I will be here till she is discharged, then we will go to Shanna and Wes's till the post op on the second of October.

Then home. 

Love to all...
Colleen


"Wonder Woman" posing as Sara Dalebout
 

Surgery Update

Mom and I arrived just in time from running errands for Miss Dalebout (she keeps us busy so we won't worry) to find out surgery was already finished at 11:10! We are getting so comfortable at the U Dub you might just find us in our jammies doing our toes in the waiting room.

We got our most hoped for scenario (for surgery anyway) so the lymph node prayers were working! Dr. Park found the tumor to be only in the lymph node and not engaging the pancreas at all, just snuggled up into the side making it appear like it was on the pancreas. It wrapped a large artery but they were able to peel it off with no damage. The large liver tumor came right off and the ultrasound revealed no new information, just the two active spots we could see in the scans. Dr. Park allowed us to keep his original ink sketch, "Surgery In September".

 

Removed corner of liver with 2 tumors. One small, one large.  One controlled with chemo, other was not so comparing these results will be interesting. Lymph node tumor was imbedded in pancreas so it looked like it was on or in the pancreas.  Dr. Park was able to remove that tumor and leave the pancreas intact. His analogy was that the pancreas is an innocent bystander that the tumors keep attacking.  The ultrasound at this time could not completely view the whole liver as the liver is a bumpy surface and the divets create shadows that may hide smaller tumors. The liver was explored by using an ultrasound probe.  He saw that there are tumors on the liver that he hopes to keep under control by the 'poisons' administered by Dr. Lin.

 

The epidural is the primary pain relief at this time, apparently they are moving toward using mostly local anesthetic for operations now that they can more precisely control the area being numbed. Sara can be snacking this evening if she so chooses and get up and get moving ASAP.

 

Colleen and Shanna

 

September 19, 2012

        Well,  The appointment with Dr. Park went better than expected.  He is saying that
possibly there is a tumor on a lymph gland that is right on top of the  pancreas. If he goes in and finds that this is not attached to the pancreas in any way, best scenario is he will remove that.  Then after
Sara recovers from surgery she will be put back in the capable hands of Dr. Lin, who will at that time determine the best treatment for the remaining tumors on the liver.  There is some regrowth of
 tumors on the liver which is because the chemo and sandostatin {octreatide} shots that were doing such a fantastic job quit being enough as the cancer out smarts any systemic trearment and sometimes actually will find a way to use these chemicals to it's advantage. This sounds like a lot of politicians
I have the pleasure of not knowing.
    When Dr. Park is in the surgery he will use a ultrasound to view the liver and determine if these are active tumors or scar tissue. Which, by the way,  both doctors have complimented Sara on the "amazing regenerative qualities of her liver".  Also, they have been very pleased with her pro active attitude and her positive approach throughout this whole ordeal.  For these super doctors to even say that is like they are shouting from the Empire State Building. And we feel the same about them.  Sara is in very capable hands.  The finest.
      Her recovery time is going to be very important.  She cannot start any treatment until she is ready. The recovery time cannot be determined untill she has had the surgery and Dr. Park does what he does best. Pray for a tumor on the lymph gland. That would be the best, then that the silver bullet, affinator {if we can get some} will knock the crap out of those liver tumors and she may not require
a second surgery to remove them. This photo shows a shadow in the upper right hand corner is a tumor.
    It is very late and we have to get up at 4:00.  Sara and Shanna said at this time, the help we need
is an experienced nanny to help Shanna to help Sara and an organic food chef who can make super smoothies in a hospital room. Wes, so far, has this position filled. We are asking for all your prayers and positive energy.

    Since recovery will be a huge factor in the progress of this treatment, Sara will not be having visitors in the hospital. I have a t-shirt that says "MOM" on it, if anyone tries to get past me. Sunglasses and hats will not fool me, either.  I love all you guys for being so great of friends, bosses, sisters, cousins, brothers, neighbors, long lost relatives, neices and nephews, Grandmothers, caregivers and everyone.  We are gettin' the DREAM TEAM back together.


p.s. I know the margins are wierd. they changed the format of the blog. Please bear with me till I have time to figure it out. 
Colleen

   

September 18, 2012

            Going to surgery appointment tomorrow. Today's appointment was
           about what we expected. The progress will be determined at time of surgery. 
           Stay tuned.  We are all fine here, at Shanna's, with Ruby reading us
           bedtime stories.

                Colleen

September 17, 2012

        I will keep posting on here to do updates. We are leaving in the morning to go to
   Dr. appointment at 3:00 in Seattle. So just be with us in spirit. The stress levels are over
    the top right now.

     Colleen

September 16, 2012

Sara Dalebout

In spite of how horrible cancer is, I have seen the good side to cancer, love and support from people from all over, even people I don't know. And given I go to Seattle regularly it has given me the op to see my beautiful nieces more often so they know who Auntie Sara is. So I will remember the good cancer has brought me. But other than that, this f'ing sucks. Going into surgery #2 and looking at surgery #3 close behind, this can't be the treatment plan, tearing up skin and ripping out organs can't be healthy no matter how much f'ing organic shit you eat. Taking away the things you've worked hard for to try to keep it from eating your insides up.... I'm mad. I'm venting. B'cuz I know you'll send me good vibes back. I think I need it. I'm still gonna Kick Cancer's Ass, it just is fucking hard.

posted on fb

Guess this pretty much says it all.  Sara, you are the strongest person I know.  I love you.
            Your Mom

September 14, 2012

               Well, we're goin' in.  Wednesday, pre-op and Thursday, surgery.
          do not know untill the actual surgery what will be removed. 
          Hopefully, just the tumors. Sara and I will be going

         over on Tuesday to consult with Dr. Lin. Whatever happens,
          they want it to happen fast. I will keep posting reports,
          meanwhile, please send some  super vibes this way.  Thanks!

                                                                            Colleen

September 12, 2012

          
                     
      Yesterday, we did not hear from the Doctor.  Which is probably good because it
  means they are still thinking of the best scenerio.  Hopefully, today Dr. Lin will call
  and let Sara know what is going on, which I will relate to all of you keeping post. Later.


        Colleen

September 10, 2012

Sara D.

    Well, no news was good news, but here we are again.  Sara enjoyed a great spring and the summer flew by.  We were all so relieved to have Sara get back to normal, we got a little overconfident.
    She had to move out of her house.  The bank would not work with her and it got way out of control. We tried to deal with them, but they would not budge. If I had the energy, I would go on a rant.
     She had a doctor appointment in Seattle on last Tuesday. Dr. Lin told her the tumor on her liver is not responding to the treatment. It is being very aggressive and he and Dr. Park, her surgeon, are going to have a consultation and determine the best plan of action. Tomorrow they will call her and come to some conclusion.  Which means she has to be prepared for just about everything. She is comfortably settled in the Purple House for the time.  I will continue the blog.  I actually could not get into it for a long time to write here! But I will keep this up to date. We hope you all have not run out of good vibrations.   Thanks to all. Stay tuned.

March 7, 2012

    Sara had good feedback from her appointment with Dr. Lin.  He said everything looked pretty much the same according to her new tumor marker taken after the surgery.  If the liver shows any activity or growth of the scar tissue from the tumors, it could require another surgery to remove them.  But at the time of the big surgery, Dr. Park, the surgeon, did not see any reason to disturb the liver at that time. If more surgery is required, we know she is in good hands. 
    Dr. Lin put her on the "Silver" list, which he said would progress to the "Gold" list. So he has gone to valuble stones analogy rather than gardening ones. It is all positive, and she will return for more scans in three months.  So everyone kiss the one you love.  I will still be posting as we travel furthur down this road. Welcome Spring!



posted by Colleen

March 4, 2012

    Sara has an appointment with Dr Lin on March 6.  They will be doing scans to determine that bin laden is long gone.  She has been back to work on her regular schedule which is not necessarily good but indicates how well she is feeling. Yesterday she was on top of the Empire State Building and I had a strong urge to text her and say "don't try to repel in your high heels!"  She went there for work and Sarah Hess went along for the ride.
    Her Dad and I were marveling that cancer did not slow her down for long.   So stay tuned and I will post results of appointment soon.  Thanks to all!


posted by Colleen

February 7, 2012

    Today is the one year to the day when Sara was diagnosed with neuroendocrine cancer in the ER at Bonner General Hospital.  On this day, one year later, we have plenty to celebrate and be thankful for.
She is back to work full speed ahead.  Has Trevor taking super good care of her. {and lookin' dang good at it} Feels 'absolutely fabulous'. And is looking way forward to a fantastic future.
    Still doing chemo to keep the cancer under control, but otherwise she is free to do what ever she pleases.  We are so happy to have ended up in Seattle with the most wonderful Doctor, Dr. Lin. 
    I am going back through all of the information we collected and I can see where we made some literally life and death decisions. You don't know it at the time, because hind sight is 20/20.  But the people who were running along side us the whole way were helping steer us to this fantabulous day.
February 7, 2012.  Thank-you.


posted by Colleen

January 13, 2012

    Sara and Shanna went to her post op appointment.  Dr. Lin was very positve and encouraged by the results of the sugery.  Her pancreas seems to be just fine after being attacked by bin laden, who has now left the building.  Her liver has some scar tissue and does not outwardly show any signs of the cancer.  Sara will continue to stay on chemotherapy for an undetermined time.  The chemo will keep the cancer at bay. They will keep a close eye on her.  She is still recovering and doing very well.  Probably will return to work soon. This is all such good news.  Thanks again and again everyone.  I am re-reading the blog and all the comments and notes from the first blog sight. You are all AWESOME.  


posted by Colleen

January 4, 2011

    A quick update.  Sara is doing great with her recovery from the surgery.  She is phasing off pain meds and resting as much as she wants. She is making noise about going back to work allready, which her parental figures will try to discourage. The post op appointment will probably be scheduled this week.  She should get in to see Dr. Lin within a few weeks of the surgery.  I, for one, can't wait to see what he says. He will probably say, "When are you taking me on that plane ride?"
    Happy New Year to everyone. And keep your chins up!



Posted by Colleen