December 23, 22011

    Well, we learned one thing, an OR minute is equivalent to 2-3 hours. We went in at 11:30 for the scheduled appointment, Sara went in at 4:20.  They were very thorough, each person that came in asked the same questions 10 times. 
     We all took turns staying with Sara until she was wheeled away in a dramatic moment to the OR.  Then we waited.  The surgery took 5 hours.  Then an hour in recovery.  By  then we had eaten all of Chelsea's cookies and had passed them around to all the 'waiters'. {Thanks Chels!} Finally, Dr. Park came out with a big smile on his face and told us everything went even better than expected.  Her liver was clear and anything left on it was probably scar tissue and there was no reason to even touch it, which was very good as the liver can present all kinds of compications.  The big tumor was alive and well, feeding off a giant vein that provided it with a nice blood flow.  Also, to back up, they gave her the octreotide shot before the surgery to basically 'drug' the tumor.  Kind of like smoking a bee hive so they don't get mean when you disturb them.  Then, he took off the major portion of the tumor on the pancreas, having to cut through the vein which he cut and repaired twice during the procedure.  They could then see the tumor was encapsulated, which is the MO of the neuroendocrine tumor, so they just scooped it up and that was it.  The surgery was done by a robot, didn't catch his name, {who was that masked man?} and required 5 small incisions.  {That if connected form a happy face flipping the bird}  Sara was sent to a regular room to recover.  Actually, it is the same floor she was on before so we knew some of the people and of course they remembered Sara.  Trevor stayed with her the first night, Sarah Hess stays tonite, then me till she no longer requires someone there overnight and/or she gets released.  Then, Dr. Park wants her near to monitor her for a week, so she will stay with Shanna.
    Dr. Park expects her to make a fast recovery since the surgery was not so invasive. As of this morning, she is awake and walked a little.  She is tired, but happy.  We are all super excited and so thrilled.
    One resident came in and told us he was so impressed with Sara's whole story, he had stayed up late to read her whole chart.  He said her progress was remarkable.  I am writing this because we all truly believe the prayers, energy, good vibes, call it what you may, was an integral part of her AMAZING recovery.  Thank-you is just two little words, but the gratefullness behind those two words is huge and cannot be measured. 
    Love to All!   Merry Christmas and here is to a fantastic new year.


posted by Colleen, a very happy mom

December 20, 2011

     This is a Pre-op post update from Seattle.  Sara, Shanna, Trevor and Sarah went to the pre-op appointment which turned out to be a 7 hours.
The surgeon, Dr. Parks, said that they expected positive results by removing the tumor from her pancreas.  The extent of the surgical procedure will be determined when it actually occurs.  There are possible complications, involving the spleen.  Possibly removing part, if not all of the spleen. Worst scenario.  Dr. Parks said the recovery from the surgery will be 2 to 5 days.  After that, he wants her to stay in Seattle for at least 7 days so he can monitor her as some complications can show up later.  She will be recuperating for a month, at least.  
    I will post Thursday sometime for a post-op update.  We will all be there for her and know you all will be with us in spirit.  Thanks amazing friends and family!


posted by Colleen

December 1, 2011

    Well, here I am to report to y'all that Dr. Lin has given the go ahead for surgery for Sara D.  Sara and I went on Monday and stayed in Seattle for 3 days so she could get scans done.  Wednesday was the appointment with Dr. Lin when he reviewed the scans and declared her liver was 99% clear of tumors and the big tumor on her pancreas was shrinking but still there. At the beginning of the appointment he was inferring the surgery could happen soon, by the end of the appontment  after looking at everything he was calling his surgeon friend to get her scheduled.  Sara said you mean like as soon as my next 6 week appointment?  Dr. Lin said no, I mean like right now. Shanna, me and Sara kind of started hyperventilating.  He also said she was textbook material and would probably be written up.  I always figured she would be famous, but her pancreas? 
    The one scan she had was like a real photograph, totally cutting edge.  It has only been out for a month and Sara was one of the first to get to use it.  The other scan was a radioactive scan where the remaining tumors light up like a golden orb. She has to carry a card to prove she is medically radioactive and not a terrorist. {Even though some of her shoes could be used as weapons.}
    The surgery has to happen fast because her liver is clear, this happened way faster than Dr. Lin anticipated, and he does not want the main tumor to start shooting off more tumors to the liver.  So the surgery will be to remove the main tumor from the pancreas and possibly any left on the liver.  Which will be determined by the surgeon, who Dr. Lin said will be "jumping up and down" to do this surgery because he "loves neuroendocrine tumors". To which Sd replied, "I love that he loves neuroendocrine tumors so he can get rid of it!"
    Sara will continue to do maintenance chemotherapy and will still be battling cancer. Hopefully, the dose can be reduced so she does not suffer the terrible nausea and other yukky symtoms of chemo.  This is not considered a cure.  Dr. Lin's analogy was even if you kill all the dandelions and can't see them, there are still seeds underground.  He also was fascinated that she has a full head of hair.  He did not explain this, just did the Doctor thing like "uummm.."
    We are ecstatic over this turn of events and are very grateful to Dr. Lin, the Seattle Cancer Care Alliance and everyone who has been rooting for Sara D. throughout this experience.  As Sara's Mom, I want to say how impressed I am with how much love and support is out there. I am so proud of Sara and love her more than I can say. "That's my daughter!!"
   

Posted by Colleen

October 19, 2011

   Sara saw Dr. Lin yesterday and he is taking over fulltime as her oncologist. It was too complicated to have other doctors involved. Dr. Michelle Anderson will be her on site doctor for now.  Since, she now can fly, she will just fly herself over to his office, which is right across the street from the harbor, go to the appointment and fly back home.  Anyone need to go to Wholefoods?  She had back pain which he attributed to her recent stunt activity.  Her markers are good, the tumors are still lessening and surgery is still on in the spring.
    He is stretching out her chemo administration so she will not continue to have such low platelet levels which lead to blood transfusions.  This is really good because it was so hard on her healthwise. 
    We all had to know about Steve Jobs because he had exactly the kind of cancer as Sara D.
    Dr. Lin said Steve Jobs treatment was totally different than hers.  It is because of the extensive research done for him that this neuroendocrine cancer treatment is so advanced.  We are grateful for that.
    Sara is doing fantastic and we can all take a lesson from her. {not flying..} Kind of stretching out the blog, but I hope you are all staying tuned in.  Love to all!!!

September 8, 2011

    Well, I finally got through to post on here.  I intend to print all these and put them in a book so we can all remember what true friends are. 
    Sara found out they won't let her get a pilot's license if she is on chemo.  Even though she is doing so well.  The chemo does make her feel woozy, but not like she cannot function.   So, all I have to say is look out Aviation rule-maker people, because you just picked the wrong person to tell what to do.
    Sara continues to respond favorably to the chemo and the octreotide shot she is still getting once a month.  The worst problem I see is that we forget to keep a close eye on her because she is doing so well.  She is still getting acupuncture, eating as organically as possible and spending as much time on Lake Pend d' Oreiile as possible which has healing powers of it's own.  Keep sending those good, good, good;  Good vibrations because I think they are bouncing back attcha.  Love to all!!


Posted by Colleen

August 16, 2011

    Sara and Sarah went to the Doctor appointment in Seattle today and yesterday for Scans and bloodwork.  It is all good news.  The tumors have shrunk 50% since the last CT scan 3 months ago. Her bloodwork is fine now but she definitely has to stay on regular blood testing.  Dr. Lin said to come back in 3 months and possibly in 6 months she could have surgery that would remove whatever tumors are remaining and to get rid of the main ones.  His analogy was "they are trees and we want them to be seeds." She will have to continue chemo for an unspecified amount of time to keep it under control, but Dr. Lin freely passed around the word 'remission'.  Also her chemo will be cut back as much as possible so she won't have the super bad side effects.
      He also told Sara D that she was no longer a priority patient.  For once Sara is happy to be considered boring. This is all such wonderful news and we are all so grateful and relieved.  All the support and energy and good vibes are DEFINITELY a contributing factor. Lauren's persistent acupuncture treatments and sound advice.  All the help Sara recieves from everyone, her strong will to overcome this nasty disease,{"to hell with it!!"}  I should hope we all can be this strong in the face of adversity.  Also, the lesson in friendship we have all learned from Sara and Sarah and their entourage. Can't even begin to express how much our family means to us. Nurse Erin is amazing.  Okay, okay, I can't take anymore.....




posted by Colleen

August 7, 2011

    One thing for sure, time flies in the summer in North Idaho.  Sara did end up getting a blood transfusion and spent the day at BGH in Sandpoint getting 2 units of blood and a dose of platelets.  Her platelet levels were at 16,000 and 20,000 is very low.   Her hemoglobin level was 6.6.  The Doctor in the ER said that chemotherapy can cause this to happen.  She is going to Seattle again later in August. 
    Sara has been otherwise enjoying the summer.  Got her pontoon boat, "The Dalaboat" running and has been on it as much as possible. It is probably the most relaxing place to be in the world.
   Also, she went on her first flight lesson.  Dr. Lin told her to just go out there and do whatever she wanted, which she has done since she was two, but now she has a license from a doctor. So, heads up {or not} about the flight lessons. She is fine.  The transfusion is like getting your tank filled, Erin said. But we are keeping a close eye on her so we catch it sooner.  If anyone sees her turning funny colors, call me!   She is not a very good complainer.  She didn't get that from me.  Enjoy the summer.  Love to all!!


Posted by Colleen

July 22, 2011

    I think I may have misled people to thinking the cancer benefit at Beyond Hope was for Sara D.  But that is not so. It is a general cancer benefit concert for everyone and open to the public.  Sara may have a benefit at some future date, but this is not it. 
      Shanna, Ruby, Annabelle, Baby Sara and Penny are visiting and staying at the purple house.  Sara is under strict instructions to not over do it.  I, as her mother, am keeping a close eye on her.  I will use my authority if my hand is forced.
    Maybe it is just as well the weather this summer is so un-summery because it kind of keeps things low key. Sara is not supposed to be in the sun a lot and that is really hard  in North Idaho when the sun is out, you want to run out side and put your face to the sky. 
    So take care and stay tuned.  Love to all!!!

July 20, 2011

    Long time no see.  Sara is doing very well and so there isn't much to report except that she is soooo kicking some major cancer behind.  She is considering going back to work full time even though I don't think she is quite up to that.  As long as she can get in her power naps, she can pretty much do anything.     
    Dr. Lin is her only Doctor. They had suggested having a doctor closer, but Sara is so impressed with Dr. Lin, she prefers to go to Seattle every six weeks.  Of course he is impressed with Sara D. also.  She is still getting regular acupuncture treatments from Lauren Miller and has a lot of help doing stuff around her house.  Her Dad has been over there a lot fixing her fence so she can stop worrying about Bentley, the jumpaholic.
   There is a cancer benefit concert at Beyond Hope on Saturday that should be a huge event.  The help and support out there for cancer patients is truly amazing.  Thanks for that. 
     I have lots more to say, but it isn't about Sara.  So I'll sign off for now but promise to keep you all up to date.

Add on to Mom's post......

I'm determined to Kick Cancer's Ass, especially since it ate mine! Seriously though.... Dad and I were blown away that Dr. Lin started my appointment by giving me the news that the Whipple Surgery was in my future! This is HUGE if anyone doesn't know this.... this was the surgery Sarah asked "why can't you do the Whipple Surgery", he basically said that it wasn't something that I'd probably be able to do.  But because I'm "Kicking Cancers Ass!", that opportunity has presented itself.  Also to mention he had a Doctor from Beijing with him, he turned to him and said "you got to look at this Dr. So-and-So, you don't see this very often", and showed him my AWESOME scans that were posted in March. (ok now I feel like im bragging, which I'm ok with).

 So THANK YOU everyone for your continuing love, encouragement and support.... this is just the beginning, but considering where I was 3 months ago, optimism overcomes me:)  Cheers! (virgin style)

July 1, 2011

    Sara had really good news from Dr. Lin.  He is very impressed with her progress. He is thinking of doing surgery maybe at the end of summer to remove the tumor on her pancreas that is causing all the other tumors. This would not get rid of the cancer completely.  But it would sure the heck slow it down. She will still do chemo on a regular basis for an undetermined time, but Dr. Lin is trying to reduce her dose to avoid the side effects.  He also gave her a license to eat whatever she wants.  She can eat all she wants now and still cannot gain weight.  He suggested giving her something to gain weight, but said the her weight is just fine.  But I said I would like to take a pill to gain weight.  Just kidding.
    So everyone who has and is rooting for Sara, it worked. We are all so pleased to have this good news. Sara is probably going down in some medical journal or something. But they would have to put in all the good vibes, caregiving, prayers, encouragment and just plain ol' cheering on.  Whew! Love to all!


posted by Colleen

June 25, 2011

    Well, the furthur between these blogs is a good thing.  It means Sara is doing very well and now we only have to pull the cancer card when it comes in handy.  Jerry and I have rented a house in Sandpoint for summer so we can be more available. Should have sooner, but we are here now to pester her when she finally can be independent of people.  She is scheduling another appointment with Dr. Lin in Seattle and we will see what he has to say. Probably wants to "have what she's having" because she looks so great and feels pretty good.  Still has to rest a lot and certainly does not want to overdo it because it is an instant relapse. 
    Summer can start now. Call me negative, but this spring goes down as the worst.  For a lot of reasons. Take care and stay tuned in, we will keep posting. It is just too much fun to blog.  Love to all!!



Posted by Colleen

Now Me

Sissy in the house.

Well, we had a whirlwind visit! Sara wanted to hang out so she skipped all her naps and we kind of made her sick for a day or two. I said "Take your naps and get your acupuncture or we are not coming back!" or "We are coming back", I don't know which is more threatening with 4 kids who can get a *little* cranky away from home and routine.

Sara had to grill and wait on people, Mom kept limping around while carrying a baby and I wouldn't take a nap. What ancestor does this silly stubborness come from? Also, can I tell you about the hair? Kate and I are just in the "all the hair you got to keep while preggers will now fall out" stage and Sara was shedding quite a bit. Luckily Sara has thick gorgeous hair so you would never know. Together we must have shed enough hair for a whole wig, amazingly none of it ended up in our food.

Hopefully on the next visit we can relax more!

Tagging on to mom's post....

Couple things.... First Thank You Mom for getting the Penthouse at Seasons for our family to come together under one roof..... I know the people in the condo below us were appreciative with 5 little one's, 4 of them 3 and under, Nucky Gerald running around chasing them all and all, (except baby Liam and Penny who watched with envy).

So looking for an Oncologist in Spokane for a local Doc, and for 6 week check ups.  I wish Doctor Lin was in Spokane:( My 6 week check ups don't involve scans to look at, it is a face to face with the Doctor to see how I'm doing. So I'm trying to weigh the pro's and con's of time, $$$ spent going to Seattle..... still don't know. 

Charlotte is cooking for me and we'll see how this goes.  Who knew you had to get sick to become healthy!  I mean vitamins, eating right, acupuncture, exercise, no alcohol.... but when your healthy you'll eat lots of cheese and red meat, smoke cigarettes while drinking a vodka tonic..

Today is the last day of my 4th Chemo round. Get out the wigs, cuz I'm pretty sure I will have no hair left by the end of the month.  My hair is coming out by the handfulls.  I told Sarah I don't know if I could wear wigs, but don't know if I can be bald either.  I've always pondered the whole "Blondes have more fun!". Although I'm not on any other narcotics but the chemo, I'm dosing up on supplements, so I do take 11 pills in the AM + the protein powder, 3 pills mid day, 3 pills at night, so just 17 a day.  I carry a big bag, always have, but now I know why, it's not to carry the Vodka bottle anymore, it's for all these damn vitamins!  I probably spend 30 min a day taking them, taking the lids off, putting the lids on... swallowing, gulp, gulp...

Lastly, I feel pretty lucky that I am able to do oral chemo, since it's now a part of my life I can't imagine those who have to get hooked up to IV's and sit there and watch the poison go in.  At least I'm able to camouflage mine with the pretty vitamins so I can feel healthy while poisoning myself. Weird.

Cheers all! (Water in hand)
~S

June 16, 2011

    With this blog, it is a case of no news is good news.  Sara is back on a pretty regular schedule.  She still has to rest a lot.  She is eating whatever she wants.  Her life is getting back to some kind of normal. Shanna and her gang were here for a week and that was very nice to have a family get together.  It was very healing.
Sara still does her chemo but does not have to take a bunch of meds anymore. She looks wonderful and claims to feel good most of the time. If I stop to think about all that transpired, I can hardly believe it. The real straw was in the midst of utter chaos Sara and I both got called for Jury duty. I called Christine Quale and told her I knew she had heard every excuse, but I wasn't making it up and had newspaper articles to prove it.  Needless to say, we did not have to show up.
     So we are all breathing a little easier now.  Whew!  I sure am grateful for the love and support from everyone.


Posted by Colleen

June 9, 2011

Sara continues to progress in a very positive way.  She is on the chemotherapy treatment right now and is still experiencing some side effects but is still able to go about her business.  Shanna, Ruby, Annabelle, Baby Sara, Penny Grace have showed up to help her get better.  Just looking at their sweet little faces is the best medicine.
    Sara is working part time.  I'm sure everyone at CWC is glad to have her back.  Sarah Hess has found her a Personal Chef to make her super nutritious food from Common Knowledge Cafe.  She also is doing intense vitamin therapy plus the acupuncture. {Thank-you to Lauren Miller!!} So let's just see who wins!  Come on Summer! Love to all.

Just what the Doctor ordered

Cali was wonderful, the sunshine, reading on the plane (just finished Tina Fey "Bossypants", she's hilarious), being on a plane, seeing such a great group of friends there that were so caring and happy to see me.  As mom said, since last Thursday, my last day of Chemo round #3, the whole time in Cali I didn't take 1 kind of medication, only vitamins, and WOW!  I really feel and felt GREAT the whole trip, I felt like myself.  And if I didn't have pictures of my insides that show I have cancer (and didn't loose 45lbs from a size 12 to size 6 in 4 months), well I'd say the Doctors don't know what they're talking about, because I feel great!  I am looking into alternative methods of treatment to do as well as my Dr. Lin regime.  But I want to do whatever possible to make this go away so I can feel they way I did this last week all the time.  Thank you to everyone who reads the blog and all the support I get from all over the country, it's pretty awesome and clearly working on my psyche.

~Sara

May 30, 2011

    Sara is doing great.  She went to Laguna Beach with Sarah Hess while Sarah works, Sara D. is getting warm finally.  She got through with chemo and is trying to go without taking any medication at all for the next seven days anyway till she continues the chemotherapy. Which will be ongoing   Still has severe muscle aches and joint pain.  I think meds leech the calcium from your system. 
    I am always amazed at how people think their experience is comparable to yours.  So by sharing every painful detail they somehow will make your experience more bearable.  But cancer, or any crisis or life changing event cannot be diluted just because countless people have endured it. Each persons venture into the unknown is a singular experience.  The individual uses all they have gleaned from life; values, examples, religious- or not- upbringing to deal with it the best they can. Some use their experience as a guideline for every other experience that follows.  Others get past it and get on with it. We will never know which kind of person we are untill we get hit over the head with the proverbial spiritual two by four that Gertie Miles always refers to. {is that a dangling participle?}
     I know for sure and am seeing it with my own eyes, my super strong daughter is not stickin' around with cancer for long.  She is tearing off her rearview mirror and leaving the c-word in a cloud of dust.  I am really glad for everyone who helped to get her there.  Have a super and grateful Memorial weekend.  And of course God Bless the USA!!

May 26, 2011

    Sara is almost through her third round of chemo.  She came to my house and laid on my couch while I had me knee up on ice in the recliner. One of the side effects of all the drugs is very achy mucles and joints. So if we had to get up for something it was a toss.  "No, let me get it, you let the dogs out."  
     I am suggesting Thorne calcium-magnesium for her pain and also for sleeping better.  Also, she got another 'big shot' and made Sarah Hess go with her to throw herself on when they stab her. They don't call it a big shot for nothing. Erin will come Thursday to officially take out her picc line. A giant step to freedom. I wrote Accredo, the TPN people, a letter about how fantastic Erin is and how I honestly attribute Sara's speedy recovery to Erin's diligence and the Dreamteam persistence and dedication. Other than that, Sara is still doing exceptionally well.  Lauren Miller is giving her regular Acupunture treatments which I certainly think is fantastic.  Thank-you Lauren!! You are super! We are collecting pictures now.  Some we had to delete cuz they are too painful to look at.  Of course, me and Erin always look good. So stay tuned if you want to know whassup.  

Posted by Colleen

May 21, 2011

     People usually associate the word 'luck' with Irish.  But actually the Irish are probably the most superstitious,  unlucky people ever.  It is just that we keep smiling and find humor in the most gruesome situations.  The optimist falling from the 14th floor must have been Irish.  At the 7th floor he yells "So far, so good!"
    But today I feel lucky.  Lucky that Sara is going to be okay. We can do this.  Lucky that I discovered my family is even more exceptional than I thought.  Lucky to know so many people rush to help throwing caution to the wind. Lucky that I can get up face another day optimistically.
    Because some people that have a crisis are not so lucky.  Their life takes a turn and they can never come back.  I feel like we went through the storm, but we can come back to a certain degree of normalcy.  Cancer will always be in our vocabulary, now. {You S.O.B}  But we have the cowboy boots and pistols to give it a run for the money.  So, this is gonna really be mushy, stop now if you can't take it. 
    Count your blessings today.


Posted by Colleen

May 19, 2011

 Sara is back to work part time.  She is off her TPN nutrition and is eating like normal. She looks fantastic, feels fantastic and is fantastic. Still a long road, but a little less rocky. Sara, you are amazing! Need I say more?




Posted by Colleen

From Me

I had so much to say after the Doc. Appt, but I think mom and Sissy took care of it pretty good.  All I have left to share is that i learned a big lesson at Dr. Lin's office, (who is by the way AWESOME), and I bring this back to a place where I began questioning myself on what kind of cancer patient I want to be.  The answer is, well I don't know, I've never had cancer before and i'm pretty sure that there is no handbook on how to be the ideal cancer case.  All I know is a questioncertain of moral had come up, and questioning what kind of cancer patient I was going to be. And I decided this last doctor's appt.

Until you have a very smart Doctor tell you, "you have a non-cureable cancer, and will have cancer the rest of your life.  You will never be able to go off chemo therapy", that's when i decided everyone else can F*&# Off. Sorry I had to say it.  What made me really mad is it made me questioin myself.  I have had the best support anyone can ask for, and wonder how the people that don't get through this.  So if there are people who don't want to support me?  Then don't.

I am posting the picture of the scan I had done last Monday, the results are amazing and this is what the hugs all around were about.  My progress with the treatments is great, although we still have that stubborn mother ship tumor that Dr. Lin referred to Osama Bin Laden.  I said, "well we got him, so what's the problem with my Osama?".  All he'll say is, "later".  He is overly please by the treatment to my liver right now.  The orig scan in on the right, my one last week is on the left.  The big black mass on the orig is my liver you can see it was overtaking my whole abdomen.  The dark circles on it are the tumors. You can also see my stomach on the right is being pressed between my huge liver and spleen.  On the new one you can see the little white bean on the right is my stomach and has room to grow, you'll also see organs you couldn't see before because the liver was so big.  I'm on my 3rd round of Chemo now, so this progress is after only 2 sessions:)

That's it for now, thanks to all with all the goodness you all are.
~s

Sissy Here!

Hi! It's Shanna posting from the SC (Snohomish County, glamorous I know!).

Part I

Well, if you hadn't seen the low for yourself, you would think Sara is a thin, gorgeous, vivacious young woman without a care in the world. This just proves we can never judge another person's life or circumstance by looking at them.

My Sara came to visit and it's the first time I've seen her as I have always known her to be since September 2010. She made our Christmas wonderful and fun but she was feeling so sick then she barely ate any food.

When she came to take care of my 3 girls so Wes and I could go to the hospital and have #4, I was too preoccupied to notice how bad she was feeling. When we came back from the hospital to a nice clean house and happy kids and got to hang out and talk with Sara, I realized how sick she was and we started Googling. Well, we diagnosed her with gallstones. I would love to have been right. When my mom and sister called two days after she left with the news I felt terrible.  She had been doing my laundry and dishes with cancer. Now I knew why she didn't seem herself at all.

So now she is here to visit for a couple days and go to the Dr for Big News. I get my turn rubbing her feet to help with chemo pain in the heels. She has energy to help put kids to bed and hang with them, mostly while sitting down. One more day and then back to chemo so we have to hurry with our acting as if we are normal people having a visit. After being absolutely sick with worry for so many months it's nice to put everything else out of mind.

Part II

So you know about the awesome doctor visit by now. I will finish telling about how Sara, after buzzing around and not having a nap for 2 days, crashed a little the night before her Dr appt. EEEK! We were a little worried but she recovers a little faster now and we made it to the appt the next morning only 2 minutes late.

Well, in the room at the doctor's we were laughing our heads off, then crying, then laughing. Dr. Lin left for a few minutes when there were tears and when he came back we were laughing like hyenas. He is used to Sara's entourage so he just goes with the flow, he said "Now what are you doing?" Have I mentioned how awesome he is? He has a sense of humor but is nice too, and you can tell his brain moves at speeds and levels far above normal people. Also, he did hugs all around after we looked at Sara's awesome scan.

So, we have won a couple of battles and it is time to celebrate. Always in our minds we know that this is a long war against a cancer with no cure (yet!) only long term treatment. So my sister looks beautiful and thin and stylish but she carries a burden so heavy I don't know if I could be so strong were our roles reversed. 

Part III

This experience made me think a lot about caregivers and patients with such serious illnesses. My sister and my family have been extremely lucky to have so many caregivers and of such high quality. My sister would not be so well now without them. There is no way to adequately thank them for all they've done except to follow their example, should the circumstance arise, and hope to do as well for someone else.

May 11, 2011

    Just got a call from Sara D.  Shanna, Sarah and Sara all went to the appointment.  Dr. Lin read her scan and was very pleased with the results.  He said her liver is normal size and some of the tumors have actually disappeared.  The tumors are shrinking drastically and she has responded to the treatment better than was expected.  Dr. Lin wants her off the TPN nutrition right now. That is certainly encouraging because that means he thinks Sara can get her nutrition from eating. { Look out Sandpoint restaurants!!} The news today could not be better and I, for one, am ecstatic.  Yay Sara D.!!
     The recently released treatment for this same cancer that Steve Jobs is taking is for more advanced neuroendocrine cancer.  Well, I guess we don't need that! I told Sara he should come stay at her house and let the Dreamteam take over.  Of course not to mention everyone's laser beams of faith and prayer.  This is so wonderful.   Sara is going to try to post on here later today. Whew!

May 9, 2011

    Sara is over in Seattle.  Sarah Hess took her on a 'round about way to the Dr. appointment. Via the San Juan Islands. They took the Ferry and had dinner at a reknowned restaurant where Sara ate her first restaurant meal in 3 months. They are enjoying the relaxing trip immensely and I only know this through Shanna and total strangers I see at the shoe store.  Because I am leaving them to their own devices {yikes} and not calling or texting. Now, that is hard! Because Sara needed some time to be her ownself. {Love you Sara and Sarah!!} Tuesday she will go see Dr. Lin and do a scan and we will know exactly what the h#^& is going on.  I am totally confident that Sarah Hess will take excellent care of her. I am so grateful to everyone who has been there for us. So, no news is good news. Sara and Sarah, I hope you are giving Thelma and Louise a run for their money. I love you and am on pins and needles myself.  Will report accordingly. Stay tuned all you  loyal bloggers.

This has been posted by Sara Dalebout's Mother, Colleen

May 4, 2011

    I once over heard a man say "Oh, how the Irish love to suffer."  It made me realize Sara missed that arrow because it occurred to me that through all of this, she has never complained  or asked 'why me' or taken  adverse advantage of her situation. That dutch Dalebout blood.  She has stood strong and independent as the situation would allow.  She will come up from being doubled over in pain or a nasty bout of nausea and say "do you need anything? Are you comfortable?"  Now that we all feel that the strain is not so bad because she is doing so well, I am amazed at her fortitude.
    Today is the last day of her second chemo treatment.  She is progressing well.  She still gets very tired and has to rest or 'suffer' the consequences.  We also have to be careful not to get over confident about her energy level and start making her get her own drink of water.  She has been able to cut down on her pain and nausea medication. Also, we are tapering down her TPN and she is eating more. 12 weeks without food for someone in our family is really unacceptable.  Going back through her med schedule notebook, you can see the pattern of improvement.
    She will be going to Seattle to the Big Doctor appointment this next week. At this appointment they will determine by scans just how much the treatment, the chemo and the once a month Octreatide shot {%^*&^%$} is working. Stay tuned for updates after the appointment.  Sarah Hess is taking her and they will try to do some site seeing and give Sara a change of scenery from basically being trapped in her house since February 7.  And stop at her sister's, Shanna, to get some hugs from her marvelous nieces who really want to see Auntie Sara!!!
    Thanks to everyone for everything. Love to all!!

April 30, 2011

    Insurance, schmimsurance.  Being sick is no fun. Meds, peds, bandaids, laxatives, brown stretchy wraps, new smell shampoo, shabby chic bedding, prune juice, cotton swabs, vomit bags and extra paper towels.  No canned dog food.
    Flip flops, fuzzy sox, bendable straws and shmooze. 10 boxes Girl Scout Cookies.
Hair cuts at home, retail therapy, philips milk of magnesia and ensure.  Every color of Gatorade, little white pills, big red ones.  Long un-fun trips. Cozy jamas.
    Hair clips, pony tail holders, 24 kinds of tea, alcohol swabs, q-tips and bobby pins.
Alkaline, Cetabine, Iodine, Assinine.
    Plastic tubs and file drawers, strong coffee, erase boards and more vomit bags.  Big calendars, glasine envelopes and gas. Yogurt, soup, yogurt, soup, yogurt, soup.
                   Get well-thy soon!

The tables turn

Love the poem mom posted by my grandmother:)

Tables have turned, mom is now laid up, she had her surgery yesterday and now the 2 of us can't help each other, otherwise we would end up so looped up because we cant keep it all straight. Don't mix the vicodin and the dilodid mother and daughter duo..... phewwwwww.

Marla saved the day and stayed with me to help with my TPN new regime, which is cutting my calories on the TPN by half:) making up the other half with actual food.  Also,bringing the time I have to wear it 10 hours vs. 14 hours.  This is a big luxury deal, being hooked up to an ugly black back pack is not what I call fun, at least I only have to wear at night so it does't have to match my bed attire, but when you have to get up 4-6 times throught out the night beause your being loaded up with liquid calories and of course..... cant forget the ugly backpack has to come with you..... put it this way I cant wait until I can just eat real food.

Mom will be back on here with her witt, I won't bore you with me trying to write with any kind of witt..... 

Love to all!

April 26, 2011

Poem by my Mom, Marie Garvey that reminds me of Sara D.

Interlude

Out of the storm for a little while

Safe in the warmth and light

Out of the noise and the hurry

The cares of deceit of life

Safe and secure and rested

New strength to meet new pain

Then out of the warmth and light

And into the storm again

Marie Powell Garvey

April 26, 2011

    Well, Sara is mostly sleeping through this bout of chemo.  She did so well when she was on her 7 day break I think we all were so thrilled to see her eating and getting around, we were kind of jumping the gun.  Gotta stay patient.  The insurance case manager asked how she was doing with all this and I had to stop and think about how I would be doing if it were me.  It was not a pretty picture.  But it made me realize how Sara {That's my daughter...} Has handled this with grace, patience and aplomb.  She never gets crabby or unruly or gets too bossy.  She always is concerned about how everyone feels and if they are too tired or need a pedicure. She still wants to pay for everything, even food,  and she is not even hardly eating.  She appreciates every tiny effort, cards, unexpected gifts, gesture and kind words.  If she were us and we were her, she would like so be there for us.  I am so proud of My Daughter through this, the worst scenario anyone could endure. 
   

Did I say.......

I don't think I said thanks for the Spuds lunch mom, "thanks for lunch!".

Also, thanks to the group last night, talking benefit stuff..... it will be fun! Did I say I LOVE GSS's hair! And thanks to Howard for the good advice.... the benefit is on it's way to getting whipped into shape:)

Ok, going back to sleep, these pills are exhausting.


~S

April 21, 2011

    The look on the Drs. face said it all yesterday. Nurse Erin went to the appointment also to ask pertinent questions and hold on tight to Sd while she got her Big Shot. Which did not hurt like a %%$#%^ like the last one but was still shocking enough to give Erin a free neck adjustment when Sara threw herself at her. The Doctor  was astonished at how good Sara looked.  She had a great 7 day break from chemo and will start again today.  We went to Spud's after the appointment and ate a huge lunch.  It was a real pleasure to buy Sara lunch.  The day before Sara and Jenn went for a ride to 'Fonners Berry' and had lunch there also. I am so thrilled to see her eating.  Had Oreo ice cream bars for dessert.
    Her vital signs are all good and she is responding very well to treatment. Do not underestimate the power of prayer, good vibrations,  family and friends. And a big High Five to her superior caregiving team. Thanks to all.

April 17, 2011

    Well, Sara is doing very well.  She is telling all her caregiver's to leave her alone for a while. Guess we all kind of started getting too bossy.  Plus she can't find anything in her kitchen because everyone puts stuff away in a different place. We are all certainly there if she needs us!  She is eating more and more and has a ferocious appetite. Wednesday is the doctor appointment and then we will see what is going on. Maybe re- evaluate her meds so she doesn't have to be asleep all the time.  I know one thing, it is all good.  Love y'all!

April 15, 2011

    Well, Sara is done with this particular round of chemo and seemed to respond to it very well.  She is up and around a lot more and having Marla make a grocery list.  Anybody need anything at Yokes?
    A nice sunny day would be a welcome addition to our rising spirits. We hope that a reprieve of seven days will give Sd a chance to feel like herself. {look out...} and gain strength for the next round.
    I can never express enough how much every little thing people do is so important and helpful.  Rich at White Cross drove all the way out to Arnie's to meet Erin  with something so she did not have to leave Sara alone too long.  Cards, letters and thoughtful deeds continue to pour in.  I hope you all realize this is a terrible situation, but is bringing out the best in all of us.  Sara will win this battle so we can all raise our fists in a big thumbs up.  We can do it!!  Sara is so strong and courageous and YOU GUYS are all awesome.

April 12, 2011

    Sara is sleeping and me, Bentley and Liza are keeping watch.  The mornings are not the best time.  In the afternoon she sometimes likes to go for an outting. Denise took her to Jenn's new place she works at, the Sandcreek Salon, so they could check it out then straight back home.  Someone in California sent her a card saying she read about her in the Priest River Times. The thoughtful expressions come from all over and are little blurps of encouragement.  Thank-you.
  The first round of chemo seems to be doing something but it is hard to tell just have to keep after it. Definitely see improvement. Just real gradual.  Stay with me on this.  Just not much to report right now. 

April 8, 2011

    Sara is pretty busy today kicking cancers ass.  She is up and about drinking coffee, eating burritos from Jalepeno's {plug} cleaning her house and generally having a normal day. So all the lasers of good vibes obviously are working. Thank-you everyone. I told her to take it easy and not over do it, but we all know how that is gonna fly.
    Erin and Denise are there today and tonite.  Today is Sarah Hess's birthday, devoted Dream Team member, so Happy Birthday to the best friend anyone could ask for.  Love you Sarah!!!
     So day 8 of chemo is a good day. "Come on cancer, you want a piece o' this?"
Wee hah!!

April 7, 2011

     Everything is pretty much staying the same right now.  Which is good.  Sara is staying up beat and looking forward to excellent results from the chemo. Boring is our favorite word right now.  Though with the group we have goin' on, never THAT boring.  Things are still falling into place.  We were thinking the dogs had to go away for a while and someone knocked at the door and there was Laura Rains.  She hardly said a word, just took the dogs and left us in peace and quiet.  Sara requires lots of quiet time.  Thanks Laura!!
     Jenn, Sara and I organized all the paper work flooding in which made Sara feel better. It is hard to feng shui insurance papers. We were watching first season of 'Absolutely Fabulous' which would take anybody's mind off just about anything. Still so funny.
     Sara has excellent caregiving people and everyone is going out of their way to make things run smoothly.  It is such a day to day experience, time goes by really fast, but really slow. Thanks to all!

April 5, 2011

    Erin an Niecey  had a hard time 'passing the baton'. They left Sara's  house nice and tidy and her feet very greasy from all the foot massage.
     It is an honor and a pleasure to be with Sara D. The hardship is seeing her be so uncomfortable with this cancer monster that if were a real person, I would strangle with my own bare hands.
     Today is a follow up appointment here in Sandpoint with Dr. Mason. 
     It is hard to write everyday as like Aunt Julie used to say; "If you don't have something nice to say, don't say anything at all."  Maybe every other day for a while.  We can still feel all the good will coming our way and can never express the appreciation we have for the love and support.  The other day I overheard a guy saying when people ask where he lives,  he replies; "About ten miles from God".  I really liked that.  Love to all.

April 4, 2011

Finally figured out the photo thing a majig.  Getting ready to go up to Sara's.  Hope today is a good day. 

April 3, 2011

     Sara is resting a lot today.  Maybe she can just sleep through the next couple of weeks.  There are no terrible side effects from the chemo itself.  We expect to see a lot of improvement from the treatment. She certainly has been uncomfortable long enough. Erin and Denise are still at her house taking excellent care of her. Jerry and I will go up tomorrow. And the Luce.  Everyone is helping out so much.  It is such a relief to know there are so many wonderful people and to be part of such a great family.  I finally got my pictures from Walmart and will attempt to post some. Haven't looked at them yet but can't wait to see the one of 'Debbie Downer', the IV rack at the hospital we dressed up with the scarf and purse. I'm on it. You all stay tuned. Lotsa Love.

April 2, 2011

     Lot of breath holding going on.  Sara seems to be doing fine with taking the oral chemo. Yesterday was calm and quiet at her house. We expect fast results with this so she can start eating and supporting the local food industry again. Today Erin and Denise, Administrative Team, are bringing her to the Spa At Seasons {plug} here in Sandpoint to get a treatment if she is up for it.  I am going to order veggie Pita Pit and hope that in this wonderful relaxing atmosphere she will be able to eat a few bites. Maybe a Mango smoothie, too. We are going to make this the most pleasant chemo experience ever.

April FoolS Day 2011

   Today is no joke for us.  Nurse Erin is arriving to administer Sara's chemo.  Denise will be the Administrative Assistant.  The chemo requires precise measuring. I will not be a part of the process as in 25 years of catering, I did not even own  a set of measuring spoons.
    Sara is nervous and apprehensive and freaked out.  Other than that, she is fine and totally ready to start this treatment.
She will be concentrating on this for 14 days, so send her good wishes on this blog or e-mail, or fb her.
Love to all!! 

March 31, 2011

    Well, we will be seeing Dr. Mason today at Bonner General.  She is going to be Dr. Lin's contact here. Both are well re-knowned oncologists. Dr. Lin has MD Anderson in Houston on speed dial.  He worked there.  We have everything we need now to get started with the treatment. Just have to get going on it ASAP. There are like a kerbillion roadblocks at every turn. It is really a challenge for Sara and her caregiver people to stay on top of things.  I have a whole new respect for anyone experiencing a situation like this and  I had a ton of respect before.  Someone was complaining about the weather yesterday and I actually had to look outside; what weather?
    Sara had a very nice birthday and got several flower arrangements.  One from Petal Talk here in Sandpoint that is gorgeous! Thank-you everyone for your good wishes and kind words.

March 30, 2011

    Today is Sara Dalebout's Birthday and she is getting a a silver bullet from Fed X to do some ass kickin'.
Let me just say this, Mr. Cancer, you picked the wrong person to mess with.  Not only Sara, but about a jillion other people.  Happy Birthday dear daughter!!!!!

March 29, 2011

Still on hold for insurance approval.  Gonna start throwing around the 'L' word.  I will post again today if there is any word.  Sara is ready to have some major treatment and get this under control. Sarah Hess, Jenn, Chelsea and Erin have her feeling better than ever.  Come on Blue Cross of Idaho!!  {whoops} 

March 28, 2011

    Well, Sara is sleeping comfortably. Sarah Hess is by her side and taking excellent care of her. I have lost my voice { real funny, I allready heard all the jokes..} and will have to be careful if I am sick or not as Sara's immune system is seriously compromised. Which is our main reason to keep her isolated and visitors limited.  Even her Mom.
     I was thinking about all the prayers and good thoughts and started wondering just what they sound like.  I know if I had a minute with God, I would have to ask why?  Even though we should not question why.  But in all my human frailness, I just can't help it.  All the books on why bad things happen to good people, All the self help psychology, all the cliche's and platitudes, Caroline Myss, Carl Jung, Wayne Dyer, Dr. Phil.  When are they gonna kick in?  I think some people have this super inner strength that gets them through. You can't read it in a book, you can't buy it, you can't borrow it and you can't fake it. You either got it or ya don't.  Sara has it. No doubt.
  

March 27, 2011

    So We think the new big patch is working. If Sara continues to improve and can eat real food, I am confident Dr. Lin will start the treatment by Thursday at the next appointment.  That is if the insurance company does not keep denying the request for this particular chemo.  The treatment he wanted to give her is a combination of three IV medications.  One is not available any more so he went to this oral medication that is two pills.  Which I cannot pronounce.  It is cutting edge treatment and that is why insurance companies can fool around.  If tomorrow I donot hear from our new best friend, Roy, the pharmacist, I will accidentally put the insurance company's name on here. So if they deny these pills, she will have to take something that is not the first choice.  What I am trying to say is, does this insurance company know who she is???? !!!! 
    Erin is back on the scene today to keep Sara on track.  It is vital that we donot get distracted from the schedule. I feel like we should be playing "Girl from Ipanema" {elevator music..}with all this waiting. Thanks again for everything everyone.

March 26, 2011

    Start each day with a hug.  The sqeaky wheel gets the grease.  The road is long, with many a winding turn. She ain't heavy; she's my daughter, sister, friend, cousin, auntie, niece, grand daughter, co-worker, friend of a friend, neighbor.
    The new patch that lasts for 7 days is apparently working plus her new med regimen. {Feel free to correct my spelling} {Shanna}  This morning Sara feels pretty damn good. She is getting an appetite for real food.  Like filet mignon, brokli in sauce, fresh strawberries, blueberries, the 35.$ worth of fresh fruit from Whole Foods that she was craving but cannot eat, tangerine italian soda; only her stomache is saying mashed bananas, blendered oatmeal, tapioca pudding and smoothies.  It still is a step in the right direction.  Once someone said they spent the day with a child and really got the message about living in the present moment.  That is how this feels. Progress is painstakingly slow and to be impatient only causes agravation. Everyones good vibes and wonderful encouragement is what keeps us, Sara and her Dreamteam caregivers, afloat.  Ride on.

March 25, 2011

   So, today we {proverbial we....} are taking it easy.  Totally staying on med schedule. Jenn has mastered the TPN so is on board for nutrition.  Gerald's "Nutrition Break" club is taking on a whole new meaning.
    We are hoping to get the chemo treatments going then continue at home.  The side effects of this particular trearment are not suppossed to be drastic.
    The stages of awareness of are slow in progress.  At the Clinic, you can see the resigned look of acceptance on peoples faces. Luck is when the other guy gets hit with the arrow.  Now, they are in it for the battle. {Sara's friend Dawn, who lives close by, even sent little plastic army guys.} There is still laughter and jokes.  The strength of these people would put us all to shame for our petty grievances. This is a very hard lesson. 
    Sara will get through this, but it will forever change the way we look at life.  I think her experience will affect the way we all see things. Good and bad. One thing for sure, Friends and Family are #1. You cannot imagine what it means to have that support.  THANKS!

March 24, 2011 @ 3pm

    Just returned from Doctor Appointment at the clinic. Sara had a bad morning and we almost did not make it.  Got right in to see Dr. Lin who took one look at Sara and said "better wait another week".   He re- evaluated her meds to help with the nausea and pain that she is still experiencing in waves. Some days she is really okay, but just happened to be really bad at this very important appointment when we were hoping to be able to start the Chemo finally which, like I have said before and he reiterated today, would cause rapid improvement.  Untill she can keep down oral meds, she cannot take oral chemo.
    Then we had a meeting with the clinic pharmacist who explained the whole chemo process and said if she can do good for two or three days, she can try the chemo pills.  Also the $#^&^%ing insurance co. has to approve the treatment which they have not done as of today. Are you kiddin' me?  If anyone wants to really talk health care reform {you know who you are} then catch me on a good day and I will tell you, reform is too gentle a word for the changes that need to be made.  I also will say the medical staff of these facilities and the people we come in contact with on a daily basis in regards to all of this stuff are absolutely wonderful, kind and patient.  The shuttle driver kept apologizing for the pot holes as he could see how sick Sd was. 
    So, we are on a mission for sure to keep Sara stable by getting her to eat {small amounts} and meds on a consistent schedule. Also, Roy, the pharmacist let me put him on speed dial. If I do not call anyone or write in here for a few days it is because I am concentrating.  Jenn an Jerry also are forbidden to answer the phone when we are in Sd's room and doing TPN and /or meds and/or foot massage and/or maintaining everything. Jenn is learning the TPN which is basically Sara's only nutritional support. She has not eaten in going on 8 weeks. The tube goes directly to her heart, so it is pretty important to concentrate.  So don't think we are rude. It is really hard. Try holding your arms out to the side for 10 minutes without letting them down.  That is what it feels like.  Sara is like holding back the running of the bulls in Spain or wherever.
   And don't worry about Lucy Dog.  Patty is taking care of her.
I love y'all!!

March 23, 2011

    I guess the Panhandler Pies Event went very well.  And Thank-you Girls.  You are all adorable.  Sarah Hess sent us a photo of Joanna in her tee shirt.  Today I will make a concentrated effort to figure out how to put photos on here because there are some good ones. 
    Sara feels pretty good today and we might try to take her out for some fresh air as it is supposed to be 57 degrees. Keeping a close watch on her med schedule and maintaining so tomorrow we will not have any setbacks. I hope you all can appreciate what an effort it is to keep Sara from running down to Seattle Nordstroms in a wheel chair. She is keeping her weight at a steady level.  Temperature; normal to a little high. But she is wrapped up in her super warm, cozy shabby chic blankets Ruby, Annabelle and Baby Sara got her.  We decided to forget eating for now, but she has a thing for cherry cokes. She can only have 10 cc's of anything at a time. Okay.  Will probably not post in the morning because we will be off to the Doctor. So wish us luck.  Hell, wish us everything.  Love to all.

March 22, 2011 by Colleen

    Trading teams today.  Nurse Erin has to leave to go back to work at SHMC in Spokane.  She is now on speed dial on my phone.  She has fine tuned Sara's meds so she is comfortable and doesn't have to sleep all the time.  We are so close to Thursday it is actually agonizingly slow even thought the days fly by.
    Her Dad and Jenn are on their way. It definitely takes three of us to make sure everything is taken care of. 
     If anyone wants to donate unused air miles for caregivers, Erin said that would be a good idea.  Hopefully, her treatment will go smoothly and we can continue that at home.
    { If anyone wants to donate breakfast from the Hoot Owl, I have not had breakfast food for two weeks.  This diet sucks.}
     When the Mass for Sara was in progress, Sara and I sat quietly on her bed and attended in spirit.  I honestly can say, we got it.  It is amazing the way things are falling into our lap as we need them.  Of course, we have a lot of help from 'upstairs'. Thanks Guys! Sara is feeling up, but  nervous about Chemo.  That is a word you do not want in your daily vocabulary. But the Doctor assures us the chemo in this case will be very beneficial.  Love to all.  Gotta go give Erin a huge hug. My family is AWESOME!!!!!!!

March 21, 2011 by Colleen

    Good Morning. And I mean that. We are so ready to start treatment.  I feel like we are at the starting line of a Nascar race. Vroom! Vroom!  Sara is doing great. We are adjusting her meds so she is not so rummy.  As far as visitors, she is pretty much concentrating on her every 2 hours meds.  Also, the SCCA housing facility is full of people who are here to be treated and heal so is not conducive to visitors. We allready cause enough commotion because she requires three caregivers.  When she comes home she will be thrilled to see everyone on a limited basis and get on with her life.  Her cancer is treatable even though it is extremely rare. The reason it is taking so long to get to her chemo treatments is that she could not take oral meds. During the past two weeks and her time in the hospital was to get her able to to swallow medication instead of IV.  She is on an IV for nutrition that is called TPN. She actually gained weight on this.  Now that she can take oral meds, she can start her chemo.  Dr Lin is confident we will see rapid results  and Sara will be up and at it.  So please spread positive thoughts.  Sara is very popular {she got that from me} so everyone wants to know what is going on.  But the truth is, it is a minute by minute operation and nothing can be planned. Anyone experiencing this will heartily agree.  So if I do not say what is going to happen, it is because I cannot say what is going to happen.  It is very tedious and requires a lot of concentration. Any distraction or unecessary commotion can lead to severe discomfort for Sara. I take the time to update this blog because I know people want to know stuff. But even doing this causes me anxiety because I am not by Sara every minute.  I do know one thing, She will kick cancers ass.  Cancer should have read the memo about MY Sara Dalebout.  Thank-you again.  The Dreamteam. 

March 20, 2011 by Colleen

    We are going to try to take Sara out for some fresh air today as it is springtime in Seattle.  There is an REI literally across the street and Sara wants to check it out.  They have wheel chairs here and Sarah Hess will be the driver. Sara wants to walk, but Nurse Erin says "NO!"
    The other morning I woke up and said; "I had this wierd dream I was all dressed up and riding in a loggin' truck!"
    Sara said, "Me too,  I dreamt I was all dressed up and riding in a limo!"
    We are hoping to hear from Dr. Lin early this week about the treatment.  When that finally happens, he expects rapid results.  She is able to take oral medication now very well and so can start the treatment.  Still not quite able to eat, but we are working on that. Someone is touting the benefits of asparagus.
    You can be assured that she is in good hands. The Mom, Shanna, Penny Grace, Sarah and Erin.  We have become the dreamteam.  Grey's Anatomy, look out. It is a rollercoaster ride that you don't want to be on, but you can't get off till it stops. I will not bring up the suppository party.   Thanks to everyone.  I love you all more than you know.

March 19, 2011

To all my friends and loved ones:

As I prepare to take my first steps of treatment on my journey towards good health, I wanted to take a moment to both thank you and to also ask for your love and support in a way that may not be most expected.

Firstly, my sincerest thanks to all of you have offered their help, sent their good thoughts and prayers, shared their stories of hope and healing, and sent support in a multitude of various way.  I cannot express how much it means to me to know that I have such an amazing community of people who care about me. 

I know that everyone wants to be able to continue supporting and helping in whatever ways that they can, which is why I am asking with respect that you do this only through the continuation of your thoughts and love and set aside any plans for fundraisers or benefits on my behalf.  As I continue to learn more information about what my course of treatment is and what that means for me, I can determine exactly where my needs will lay.  In the interim, if you have any ideas or questions about what may be organized in the future you can contact Laura Terry at (208) 610-1821 and she will keep everyone’s information to share with me. 

If you would like to send any other correspondence to me through the mail, you can send to my home address at:

207 Kootenai 4^th Ave

Sandpoint, ID  83864

Plato once said that “The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated.”  So much of our physical state is intertwined with how we think and feel and the road that lies ahead of me is one that will require me to be strong, centered and surrounded by positive energy.   Every part of me needs to be focused on healing and I need to be able to set aside any thoughts toward anything that draws my attention away from that singular goal. 

Thank you again to everyone for all that you have done and for allowing me to head towards the future with the comfort of having such wonderful and supportive people in my life. 

March 18, 2011 by Colleen

    We are determined today to keep Sara strong an focused so she can begin Chemo treatment.  Doctor Lin says she has to be ready before we can begin. So hold on tight.
    Wet try to inject humor into a humorless situation.  Bein' Irish and all. Being here with other people experiencing the same thing and seeing them try to smile through the tears.  The SCCA housing facility is AWESOME.  There is no political 'correctedness' here. Everyone has one thing in common. The number one human ambition; Living.
    Sara is the stongest person I know and she reminded me of that when I said 'no' to something yesterday.  The look on her face was the same look she gave me when she was two.  I wish I had got a photo because THAT is the spirit that will pull her {and us} through. And why she can wear whatever she wants.  Gerald drew a picture of "Captain Octreotide", {the big shot} which we framed, coming out with guns a'blazing. He is kind of a cross between Jack {in the Box} and Spiderman. When I figure out photos on this blog, I have some good ones.
  We will probably be going off the grid as from here on out we need intense concentration. All the good will and fantabulous laser beams to the disco ball are absolutely blinding.  You are all way more than you think you are.  Stay tuned to this blog if you want updates. This is where the action is.  Sara is in super good spirits and has the best caregivers in the world. Thanks to all.

March 17, 2011 by Colleen

    We went to the big doctor today.  Shanna, Sara, Me and Penny Grace listened closely to every word. He said she will begin treatment immediately.  Now that her meds are regulated.  She got the BIG shot today. Literally. Sara said hurt like a !#$^^%*&&^%. 
    Erin Abromeit swooped in in a Maroon Malibu and saved the day as Sara's  ACREDO HOME CARE nurse.  We are comfortably set up at the SCCA housing facility in Seattle.  Possibly be here for one to two weeks.   I am still keeping the crowds at bay till Sara is stronger.  Sara ate a fourth of a cup of WHOLE FOODS gourmet soup today. {Plugging REI next week}.  The first solid food in probably 6 weeks.  She is on a nutrtional IV.
     I guess Sara was on the front page of the Daily Bee.  Save us a copy.
Prognosis: Good.    Spirits: Good   Attitude: Still Good.
     Never underestimate the power of prayer, good energy and above the fold exposure.  Thanks to all.

Update

Hi all Colleen is busy right now asked if I could post a update for the moment, Sara's Dr. Appointment this am went well from what I understood she is getting her Big shot the once a month treatment has begun!!! Colleen will post details later tonight..

March 16, 2011 cont. by Colleen

Okay.  Call me a cab..."You're a cab...."  We are packed and ready to go.  Just waiting for our suitcase of meds from the in house pharmacy. Sara is resting up for the trip. Everyone wish me luck getting us to the SCCA house. Lots of volunteers here at the hospital to help. I will say this is a helluva a way to find renewed faith in mankind. Love to all!!

March 16, 2011

    We are leaving today for SCCA house this afternoon.  Sara has successfully been on oral meds since 3:00 yesterday afternoon. We pretty much have to leave before we pull a 219. We allready dressed up the IV stand, AKA 'Debby Downer', in a scarf, purse and sunglasses.
    Sara is still spending most of her time resting and medicated for pain but now that the scan, which took three days, is done, she is on to treatment and will be able to scale back on some of the heavy meds. Her spirits are high.  Big Doctor appointment on thursday.  Good Luck Day for the Irish. Gotta go pack before this hospital tan sticks.  This hospital is AWESOME.  If anyone out there knows anyone that was in our position, just call here and make an appointment, like Sarah Hess did for Sd.  Do not pass go, do not fool around.  In fact here is Sarah's phone #............ just kidding Sarah.  Thanks again for all your loving support.  

March 15, 2011 by Colleen

    Waiting for Team this morning.  Sara felt so good last night she laid awake out of pain.  We walked the halls this morning and she went with me for my double tall w/ 3 raw sugars.  {Yes, 3}  That is really progress for her to walk around. Dawn, her friend who lives right down the street came by to drop off a care package at the nurses desk and Sara was up walking so we ran into her. They had a nice visit.  Dawn, you really made her day.  Thanks!  The meds are finally being balanced and consistent which has been a frustrating journey.  She goes for more scanning at 11:00.  The scan has radoiactive bead in it so she is technically radioactive for 8-10 days.  They gave her a card to carry from Homeland Security  to prove it is medical and she is not a bomb carryin' fool.  I knew the FBI would get involved at some point. Probably post again today.  If things go well we will be leaving today. It will make everyone here awful sad to see us go. " It ain't easy bein' us."

March 14, 2011

    Sara a had a great night and slept good.  The Team of Doctors came in and said she might be able to leave the hospital this evening and be an out patient for her appointments. We would then go stay at the SCCA housing facility.  They are very optimistic about her treatments which after she begins, they may scale down to once a month.  Hopefully, she can return home to Sandpoint for treatment.
    I am officially addicted to Double Tall Lattes.  Living at this hospital is like being on a spaceship.  Pretty cool.
    The laser beams are working because the air has changed and all I feel are 'good, good, good----good vibrations...'.  Thank-you God and Thank-you all you special people. 

Sissy Here

I am sitting with Sara right now. I got to visit her today from 1 to 10 PM. Penny and I hung out and kept Grandma Colleen company during Sara's naps. This way I got to talk to her more! I was just giving her an update on a cute picture from Jenn with the dogs. Thanks to all the dogsitters-Laura, Denise, Chelsea, Jenn and Jerry Dalebout (heehee). You know how much Sara loves her dogs.

It was great to stay all day and feel useful, I even gave Sara a little foot massage. It is definitely more stressful to be away from Sara and wondering how she's doing, than to be at her side even if she's just sleeping. I wish I could stay all the time.

Keep sending positve thoughts in any form in her direction! Sara reads her comments and facebook when she feels well and every positive message sent helps her feel the love.

Love,
Sissy

March 13, 2011

    Sara is resting  after not sleeping very well last night.  We are waiting for a procedure tomorrow that will determine her treatment. They would do it sooner but have to wait a certain period of time. So the next few days are important about who,what where, when, and how. {and sometimes y}  Everyone here is really nice and helpful.  They love Sara D...."She is awesome".  Sarah Hess, You made quite an impression as a best friend and advocate. 
    I am sleeping in the room in a very comfortable hide-a-chair {sarcasm} and I am looking forward to the year 2012, and I LOVE telemarketers! 
    Shanna, Ruby, Annabelle, Baby Sara and Penny Grace got Sara super cozy blankets at 'Tarjay'. So patience is a virtue and we are really putting that to the test.
    Everyone consolidate your good vibes and send them out as one giant laser beam of love and healing power.  The way these arrows of good energy are coming in, we have to duck every 15 seconds. There is a disco ball in the corner of the room so send 'em there and they radiate throughout the day like sunshine. Love to all.  Couldn't do it without you!!!

March 12, 2011

We are still at the University of Washington Hospital.  Probably going to the SCCA house evntually. Sara is not using her phone a lot, so just keep an eye on this blog for any updates.  I am unable to return every call as I am concentrating on taking care of Sara D. It is still a minute by minute report and we appreciate everyone's concern and want to keep all in the loop, but untill next Wednesday, there is nothing to do but follow the appointments where they take us and a plan of action is set in place.    

March 11 Update

    We are still at the hospital in Seattle.  Sara has excellent Nurses and Doctors watching over her. Her Mom is here now which is almost as good as Sarah Hess to whom I am forever grateful.  It is almost like Grey's anatomy except no one has a telephone pole sticking out their ear. 
    Her prognosis is literally minute by minute. They are determining the best treatment for her particular case. We will stay here untill they are comfortable sending her back to the SCCA place or possibly home. Sara is resting most of the time to keep up her strength to kick some major behind.  I will keep this updated as best I can.   If anyone wants to send her a note or card send it to her house 207 Kootenai 4th Ave. Sandpoint, ID 83864 and we will make sure she gets it.

Thanks to everyone for all you prayers and kindnesses. North Idaho truly has a halo.

Colleen

The Scoop.. per Tuesday

Hi All, Yesterday was a very busy day we woke up and went to Sara's real doctor appointment ( meaning a doctor that has a plan to save her life) if you can imagine it was music to our ears.. the whole reason we are here to begin with!!! Dr. Lin is now Sara's Oncologist he is from MD Anderson in Houston and works directly with Dr. Yao ( the doctor we were striving to get in with in Houston).

Dr. Lim admitted me into the UDUB hospital, we're trying to stabalize my body.  I haven't been able to eat whole foods for ...... ????? I can't remember.  So I am on a heavy liquid IV diet to try to get me to stabalize my weight.  I've lost 10lbs just since I've been here.  Sarah tried to go get me some pants that wouldn't fall off... and bless her little heart, she thinks I am a size 6.  Well I'm not that small, especially by H&M standards, but I feel like I did when we used to go to Cali and had a hard time finding a swimsuit for the tall lanky girl with no boobs.

This skinny sick girl is just waiting for someone to tell her... "take this pill, it will make all those mean tumors in your liver go away".... but I don't think that is going to happen.  So now I start to learn what it means to live with cancer.

I'll give an update today what's happened since I've been here....

~s

Well it started out good......Sarah Hess

This morning upon our waking up we made plans to conquer Seattle Space needle whoohoo.. Everything seemed good Sara was feeling OK ( not her typical fabulous self ) but good enough to go for a stroll to whole foods then to space needle for some good ol family bonding with her dad, sissy ,wes and thier adorable girls!! We got some GREAT pictures i tell ya, i must admit even I was a bit whoozy way up there so maybe was not the best idea but oh well, So now here we are sitting in the ER at the UW hospital cause Sara's whoozy spell got alittle out of control ( we decided we needed a good IV cocktail to get her feelin to par again).. One funny thing i can say is im glad im such a pest cause we r cozy in a hospital room bed meanwhile people have been in the ER waiting room for 4 hours...sucks to be them i tell ya!!! Hence i think this is why Sara asked me to come...the squeeky wheel gets the greese right?? So while the rest of you are livin it up this saturday night out drinkin your micro brews and fancy vodka drinks we sit in a 10x12 hospital room with a liter of CT scan dye and a bottle of ensure.......Cheers!!!!

Update from Doc visit today

Okay, well... the rides at Disneyland are probably way more fun...... Dad, Sarah, Sissy and I sat in a little cramped hospital room, with nurse after nurse asking the same questions over and over.  By the time the white haired, white bearded man came in it was obvious that he skimmed through my chart notes that all the nurses wrote down just moments before.  He hadn't even taken a look at the scans, x-rays that we fed ex'd overnight here earlier this week since he was ON VACATION! GEEESSSSHHHHHHH.

All in all, he was no saving grace, we all definitely walked out more deflated than when we walked in... On the way in we had cameras clicking, flashes flashing.... it was like the episode of Absolutely Fabulous when Eddie has to go in for a hangnail and Patsy goes in for moral support with photographers, champagne and cigarettes.  On the way out.... it was like we had just come from a wake.

After that, we came back to our cozy home-away-from-home and Sarah was on the phone, again, and we are now seeing another Oncologist Tuesday morning.  So Sarah, Dad and I are going to get cozy over here in Seattle, in our little home away from home, waiting, wishing and praying....

I was lucky tonight.... Lil Penny came to say goodnight to her Auntie Sara:) Tomorrow the Seattle Center with everyone, Ruby to lead the way.  And these 3 amigos, the next plan of attack if we aren't liking what this guy is saying we see Tuesday...... we're going to look into case studies, experimental medicines and whatever else is out there...... Switzerland here we come!

The answer for a prognosis rolls on....

~S

Seattle bound!

And we're off!  Dad is captain, Sarah co-pilot (even though I'm in the passanger seat) and me sleeping of course...... It's a gorgeous day, the Colombia looks beautifauul, (even though I still would never swim in there... Yikes! Who knows what in the bottom of that river).

Weird Deja Vu with Dad, Sarah and I roadtrippin it... feels like 20 years ago when dad took Sarah and I to The Rolling Stones concert in Vancouver B.C.  Sarah and I forgot our garment bag with ALL of our "lets look HOT" clothes for the occasion.  We talked dad into taking us shopping to ensure we were HOT, and, well, it worked.

Last night going to sleep I felt like a little kid who's waking up to go to Disneyland in the morning.  Funny how that works, how the fun of Disneyland, the fantasy, lights, costume, big castles, waterparks and rides can be traded in for the happiness of seeing a doctor, a specialist that is, to tell you your prognosis for your disease.  So yeah, I'm excited.

I'll keep ya'll posted, so come back now hear? 
Lots of love!
~s

Excited

I've taken myselft of the Benedryl so I could function at work today....  it felt good to know what is going on and some normacy in my life.

Leaving tomorrow to Seattle before an ice storm takes over the pass.... passengers are myself, Dad and Sarah.  Jenn is staying behind to help take care of Mom, Bentley and Liza:) And Sissy is meeting up with us for the Doctor's appt Friday AM.  I am on pins and needles to hear what they are going to say... I am looking for concrete news so I can understand what exactly I'm up against better. 

I'm down to 150lbs, and since I am not taking the Benedryl, the rash on my chest is starting getting worse and going down my arms now. Soooooooo I pretty much look like a freak. Still living on Ensure and Gatorade, no whole foods.

Well good wishes, prayers and all that stuff from all you I will be channeling! And I thank you all in advance:)

I'll keep you posted!
~sara

Progress

There is some progress in this very llllllooooooooonnnnnngggggg drawn out process..... Looking forward to Friday.  Dad, Sarah and I are heading to Seattle staying at the Seattle Cancer Care House right by the clinic and conveniently located 10 blocks from downtown where Westlake  is:)..... hmmmmm. 

Sissy is meeting up with us Friday AM for the doctor's consultation.  We have no idea what they are going to say or tell me about treatment.. this is like not finding out the sex of your child.  All I know is 3 weeks ago a doctor said the C word to me (Cancer), and I still feel like I'm waiting for a diagnosis.  Even though I'm shooting my self up everyday I just don't feel like for the "aggressive" cancer I have and the "aggressive" treatment they said I needed..... well I'm no doctor, but it just doesn't seem like this is very aggressive!  I want this shit gone, now.... hasn't cancer ever heard of ASAP?

Yesterday was hard, if something could go wrong, it did.  And considering my hormones are all messed up, I thought I was having a nervous break down....
I'm rambling now, characteristics morphine does, and a lot of times doesn't make sense. A big shout out to everyone and your support, good thoughts and prayers. To my Dad, Chels and Laura Raines for keeping Bentley and Liza entertained for me.  To my Mother, Sarah, Jenn, Denise and Erin for staying with me... (even though I tell them I'm fine, then I forget to take meds, so they're right.) My sister, brother and Sarah for fixing this website stuff for me, everyone who's been so awesome bringing me food, I have to say, for someone who hasn't been able to really eat, my refrigerator is more stocked now than it ever has been. Just to everyone helping in anyway they can, from Lauren's acupuncture to handy man Dave. Stay tuned, Jill has offered the DTC to do a benefit which Karley is brewin up.

For now it's Seattle, to mull over what the specialist say, and decide if to stille go to the Mayo Clinic in Houston for that 3rd opinion.  I figure if they say the same thing, then I'll know the treatment is right, right?

Love to all,
~S

Some Of You Might Know Me As Sissy

Hi everyone and welcome to the new blog! I'm doing a little guest post until Sara has time to write her own. Y'all know how busy Sara is all the time even when not in the best of health.

Sara has neuroendocrine cancer and she will be over here in Seattle this Thursday for her Friday morning appointment at The Fred Hutchinson Cancer Center. She will post more when we have more information.

We kept the Caring Bridge guestbook messages, they are posted at the top for your perusal. Thanks so much for all your kind words, thoughts and prayers. Sara feels the love!

Sorry about the tribute mix up from the other site, that was a little tricky of them, we made a PayPal Donate button on this blog if you are interested. We appreciate any support whether it be words, prayers, deeds or donations.

Please use the comments section, Sara loves feedback. Thanks Gerald for prettying up this blog with graphics, etc!!

Sincerely,
Sissy
(Shanna, big sister)