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.