The Roller Coaster called life....

I know I don't post often, (thank you mom and sissy)... social media is a time killer!  But have realized documentation of this ride needs to happen.  So those who read it great, if anything its to keep me straight.

We call life a roller coaster.... I am a believer.  My chalkboard reads "Breathe, Bike/Run, Balance, Be Still, Listen, Slow Down", it's all to make my body able to fight off multiplying cancer cells.  I am untraining behaviors and retraining to be calm.... it is a lot harder than you I ever thought.

Roadtripped to Canada with Bentley and Lou, beautiful country.... I learned my dogs are patient, Banff and British Columbia are beautiful and I'm grateful for good brakes on my car.  The 1700 mile trip ended in Seattle with Dr. Lin's smiling face and time with my sister's awesome family... perfect.  So this is the roller coaster.... 2 days of scans showed no new tumors!  Tumor markers from my blood draw at BGH before I left showed they were not in the red, 86, but still double from my draw in April, 46.  "If we can stabilize you in that range, that is the goal" Dr. Lin says.  He has me taking a combination of meds with my chemo that will create an enviroment in my body that hopefully cancer cells don't thrive....  I left happy and optimistic, even though the meds are anxiety drivers and depressents I try to ignore it... my roller coaster ride....I was at the height of the loop-de-loop with his good news and smile.

Then Tuesday I get a Dr. Lin phone call.  Tumor marker (called chromogranin A) from my visit last week is at 111.  BOOM... down the loop-de-loop I go.  Still within a good range (80-90 is the norm ceiling), but trending up.  He reminds me that my scans were clear, phewwwwww.... but with them going up I dread to see dark spots next scan.  Sooooo we double the anxiety and depressent meds.. so if having cancer doesn't bum you out, the meds will.  Frustration looms, anxiety is constant, so I will distract myself with whatever I can.

My goal is to stay healthy with food, exercise and postive life experiences, which all of you are part of and I am so grateful, so if I haven't said thank you, I thank you.

I am going to Brazil to see John of God in September with my loyal flight instructor and friend Chris Rinehart. He is a world renowned spiritual hearler who has healed people from all over the world.... not to mention the casa itself is supposed to be an amazing place of healing.  I've decided Western medicine has gotten me this far, I want to exhaust all resources... until then I am trying to prepare my mind and body for what september will bring.  Go to the link below if interested more:
http://www.johnofgod.com/index.php/about-john-of-god.html

Life is beautiful, savor it, love it, regardless of where you are on the roller coaster the hard times make you stronger and make the times at the top of the loop-de-loop sweeter:)

Love to all!
~S
Last day of trip, waiting for the last ferry to Seattle.... 

Banff was amazing.....

Bentley, Lou and I @ Lake Louise:)

Healthy Lifestyle...Let us begin.

    We just came back from an appointment with Dr. Lin. It was all about Sara  D. Concentrating on herself and getting really healthy and RESTED.
   She will be on affinitor  now which is the oral maintenance chemo. She won't be working for a while because working interferes with the chemo.  Or, chemo interferes with working. But whatever, she is not working at this time.  I will say Coldwater Creek has been hugely supportive of Sara and we are all so grateful for that.
    It seems she has been highly successful in treatment even though sometimes it did not appear so.
From the very beginning, Dr. Lin's objective was to get her to this point, taking the maintenance chemo and being able to live normally.  The process of this result is mind boggling and a case of the more you know, the more you know you don't know.
    We decided to continue this blog because Sara's story is going to affect a lot of people who have or will experience what she has.  Only because of her experience, their road will be less bumpy. And they will need a fantastic Doctor, of course.  So we are going to continue this Cancer Kicking blog.
    Happy Spring. It sure is. Love y'all!



posted by Colleen

February 18, 2013

    Sara is back to work and back to normal life.  That is, normal for her.  She is on a maintenance chemo treatment that makes her feel very tired, but not too sick. So I will be posting further and further between blog posts because I hope I will have nothing to say. {which will never happen...}.
It feels like a huge rock has fallen out of our pockets and the future spreads out before us like a clean chalkboard.  We are all so excited and happy.  Each day is a gift.  And I did not see that on a Hallmark card, I said it myself from my heart.
    It is truly a privilege to know so many fantastic people and to experience the unbelievable response in a time of crisis. This quote came bouncing back to me from the old days...

    " The world is not so bad a place as some would like to make it.  But whether good or whether bad, depends on how you take it."

   
Posted by Colleen

   

February 7, 2013

"Scans were clear.... Chromogranin A normal, no addtnl surgery.... Will be in Seattle once a month to meet with Dr. Lin to make sure the oral chemo is working and we don't see any surprises "pop" up:-) Dr.Lin used my Oncoplex results to explain why my cells went crazy and to prescribe my maintenance, one of the first patients to benefit from this new medical option! I'm outta the weed for the second time.... Now to keep it that way:-) thanks to all for love & support, and cheers to good health! (I'm emailing Dr.Park to tell him some can win the lottery twice:-)"

    Exactly two years ago the 'fit hit the shan' for my family.  I tore my minuscus, our rental house had been destroyed by drug addicts and was surounded by cops from 3 counties, Dave was in the process of getting a hip replacement, my sister was in the hospital with only God knew what, two babies were joining our family, my brother was on his way to the emergency room to consequently leave this world and Sara was diagnosed with cancer.
    My Mom always said you only got as much as you could handle, but seriously?  
    So today we are all celebrating Sara kicking cancer's ass with all the help from all of you. The way everyone jumped on board to help her get through this is completely overwhelming. Sara is truly the strongest person I know. The last two years have been like walking under water. Today it is time to take a deep breath and get back on the horse.
    We are so grateful to Dr. Lin and Dr. Park for being so smart.
I have a lot more running through my mind to say, but it all sounds too mushy. You can all read between the lines.  Here's to a great day and to miracles!


Love to all. 

posted by Colleen

January 12, 2013

    Well, Happy  New Year!  And it is for us. Sara went to Seattle last week for her last big dose of chemo.   It made her pretty sick but the chemo is working.  Dr. Lin said he wanted her to do the full four rounds of this treatment as it was working so well.  Her dad and mom {me} took her to Coeur d' Alene for her treatment yesterday. Her blood count was high enough to get her next to the last dose. Next friday, she will go to Cda for, hopefully her very last dose of intraveinous chemo.  Being able to go to Cda has been a big relief.  Then back to Seattle for an octreatide scan to determine the next step. 
    Dr. Lin has not decided yet how to do the maintenance chemo, but we have total confidence in his decisions.
    There is not much to report at this time as we are just getting Sara through these next few weeks. I will update this blog at that time, then hope that we will become very boring and no one will even bother to check this anymore. 
    The past two years have been a whirlwind of ups and downs and inside outs.  I know other people have had their own struggles and I can only hope they have experienced the support we have. I know Sara D. has been an inspiration to everyone. {She makes me feel like a big cry baby.}
    So check back later and See whassup.  Thanks to everyone and much love.



Posted by Colleen

December 20, 2012

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

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





posted by Colleen

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

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

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

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

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

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

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