Long time No See

    Hi and Happy New Year. We have been concentrating on getting Sara to Spokane at Cancer Care Northwest for a five week treatment plan implemented by Dr. Lin. It was a decision that made it easier for her to get these treatments closer to home and not have to find a place to stay in Seattle as the treatments are 5 days a week for the 5 week period. She is now in her last week. This particular treatment plan was to try radiation on targeted areas. They literally tattoo a 'target' on you to be sure of the exact spot every time. After she came back from Brazil, her lymph nodes in her upper abdomen were showing signs of cancer. Also, causing her extreme discomfort. The radiation treatments were then aimed at the lymph nodes.   But because of the radiation, she could not continue her regular highly effective chemo {that made her very sick, but was controlling the growth of tumors}. The double whammy of radiation and chemo would be too much. The chemo treatment was then modified.  The only problem was if any of this new treatment was working since her tumors grow so fast, five weeks is a long time to wait to "find out".
    She has two new Doctors at CCNW, the radiologist, Dr. Call and the oncologist, Dr. Sienko.  Cancer Care Northwest is a top rate facility in the North end of Spokane and her doctors there had no qualms about letting Dr. Lin boss them around. At Sara's request, Dr. Sienko did a scan last week about in the middle of this five week treatment and the results showed the radiation was knocking down the lymph nodes and the limited chemo treatment was keeping the liver tumors in check.  The stress of wondering about that for three weeks was, well, stressful. Also, her chromagranin levels went from 537 to 162 during this time which is really, really good. Sara has been very fatigued as was expected and we have tried everything to eliminate the nausea, which is the worst.
    Just re-reading this makes it all sound so easy compared to the "rest of the story" to borrow a phrase.  In the meantime, back at the ranch, we had to move out of the purple house because someone decided they just had to have THAT house. It was a dark and stormy night when we had two days to move because her five week treatment started December 5 and we certainly would not have time 'within 30 days' and get her to Spokane 5 days a week. We moved most of her stuff to  a storage unit in Sandpoint and the made her comfortable in her old bedroom at home. She is thrilled to be back home with her parents. That was irresistible sarcasm. People came out of the woodwork to help us move her and we can never be thankful enough for their kindness. It has turned out, thank God, that driving from our house, about 50 minutes, to CCNW has worked out fine. Lots of people have offered to drive her back and forth which has helped tremendously. Sandpoint Cancer Care Services have helped with the gas costs. Marvin, my new BFF, tow truck driver from Spokane helped get my car repaired in 24 hours when it blew a petcock. {!?}.
    After this week, Sara will go see Dr. Lin and he will determine her continued treatment. All the calls, all the cards, every little, big or in between gesture of help, all the support, all of you guys are amazing. Do not ever underestimate the power of kindness. And never doubt the generosity of the giver. Smile. It is 2014. 

                                                              
                                               Basic support group photo

Is this ride over yet?

Warning: on heavy pain Meds, not responsible for grammatical error or foul language

Brasil was lovely.... I intend to return... But not yet. The hoedown is upon us, can't believe a year has passed... It goes so quickly, especially when your asleep or sick for most of it.

I plan to recap Brasil, since returning I've been layed up thinking and I know my outline to write, now to find a time when energy, my computer and manageable pain are all in the same place. But this is my post Dr.Lin, post octreotide scan, pre Hoedown update.

Before I left for Brasil, Dr.Lin told me I shouldn't go and go right back on chemo again, indefinitely. After spending the summer sick, I just couldn't bear it... By then end of the appointment I convinced Dr.Lin this trip was much needed for my emotional and mental health, he agreed as did those of you who had been around me.

Today I found out the cost of that decision, but I will tell you it was much worth it.... Brasil was lovely.

I've been in pain for a few weeks now, it was progressive and by the time I got home on the doctor scale of pain I was a 10, the word "SEVERE" in blinking neon white blinked when I closed my eyes! I thought maybe kidney stones.... Could it be that I have something wrong with me that is not directly cancer related? Of course not, I am a healthy cancer patient! This morning, after 3 days of scans and looking at my favorite nebula ceiling art... Dr.Lin confirmed the cancer has taken up residence in my lymphnodes, making them swell pressing on nerves and causing the "SEVERE" pain.


It looks as if some more chemotherapy running concurrent with radiation therapy are in my very near future.... I can see that this holiday season , as the last 2, will be providing unique physical gifts.... No surgery this year tho:)

Ill set up shop in Spokane, working with highly recommended doctors from Dr.Lin..... So were not running back and forth over the pass....

My last Dr.Lin appointment before leaving for Brasil  I  came to a realization about this new life I am now living......  I have cancer, I live with cancer and I manage my life with cancer in it. Since my diagnosis I feel like I've been chasing the rabbit around the track, and at some point I'll reach the finish. It wasn't until Dr.Lin said IVchemotherapy indefinately I realized this is now my life.... There may be no finish line. I e said many times, will say it again, I am grateful for the perspective cancer has given me in my life, I believe I am a better person because of my diagnosis, for myself and those around me.... But I am kind of done. I want to get off this  rollercoaster, doesn't cancer know I'm busy! I want to be able to DO & GO, and not be prisoner of being sick.... I want to EXPLORE & find my PASSION in work.... And I want to LOVE freely without feeling vulnerable because I'm sick. It's kind of like having a house guest who has overstayed their welcome.

I have seen this cancer free self in my minds eye, in Rio I walked the streets a healthy, happy girl with not a care in the world..... I recently lived this and know what it looks like.... I just need my body to catch up with my mind, soul and heart.  I am ready for this next battle, I just really want it to be the battle  before I pull out my troops and declare victory! I ask for you help...... As you all have always and continue  to give.... Your love, prayers and of course good ju-ju are needed.

Obrigado! Love to you all.... And hope to see as many of you as possible at the Hoedown Saturday... Supporting those who are also on the rollercoaster with Community Cancer Services!

~S

Home from Brazil

    Sara is home from her trip to Brazil.  She had an amazing journey and met with John of God.  The results of this experience will be told when she meets with Dr. Lin again and has more tests done. So, we are back to waiting. I will let her tell the story.  But she is home safe and sound. Bentley and Liza are thrilled. She traveled to Rio and Ipanema. She went hang gliding. Just looking at the pictures gives me vertigo.
    Hoedown still goin' down. November 9 at the HIVE on first avenue in Sandpoint. All proceeds going to the Sandpoint Cancer Center.
     Will keep posting on here, stay glued.



posted by Colleen

Brazil cont.

                                        


                                                                 Still in Brazil.....

Brazil

   

    Sara is in Brazil right now.  She planned to go early last summer and
after getting an okay from Dr. Lin after her last treatment, she went.  She is staying in Abadiania, Goias, Brazil and is at the John of God retreat.
    She has received a spiritual surgery and we have not heard of any results from this experience as of yet. Her tumor is still being a little %$#%^ and is mutating.  When she returns she will go directly to Seattle and be scanned and tested for her counts and then be treated accordingly.
    Anyone can research John of God and view videos of him and his treatments.  He is well renowned and also has a book out.
    So, there is not much to say right now as we are all waiting to hear from Sara. Her communication is limited.
    Also, the Second Annual Hoedown is scheduled and in the works. All proceeds will go to the Sandpoint Cancer Center. Find your boots!

September 2013

    Hi. I am on Sara's computer at the purple house. Way over my head here. {McIntosh} Anyway, just getting back on here to update everyone. Sara has been getting intravenous chemo since the beginning of August. She is in Seattle now doing her third treatment.  Shanna came to Sandpoint to stay here and take excellent care of her {and vacuum the crap outta the purple house..} Sara was pretty much in bed and still is because this chemo is kicking everyone's ass. This cancer is really getting irritating and we are  just about over it.  Sara is going to Brazil to John of God as soon as she is able. This is okay with Dr. Lin.
    Big kudos to Amber Kohal today for delivering to Seattle Sara's chemo that was here and Dr. Lin wanted her to start on it again. It had to be refrigerated and kept cold all the way there and Amber performed like a pro. Considering she and her Dad run the Flying Fish Company in Sandpoint on 5th avenue, refrigeration and travel does not scare her.
     Lauren is still doing acupuncture on Sara. She is now treating her for the mutation of the cancer cells.  The cancer mutates way faster than any treatment can keep up with it. It is a horrible monster and right now Sara, even though she is Wonder Woman, is trying to fight Superman all by herself. Time to bring out the big guns. We need all the good vibes and energy coming this way. Right now. We are so close to finally Kicking some major behind.  Send lightning strikes.
       Which also brings up the second annual Dalebout Kicking Cancer's Ass Hoedown on November 9th in Sandpoint. Proceeds going to the CCS in Sandpoint that helps so many people.  T shirts are on order.
    I will be back on here updating the blog. Big thanks to everyone who has pitched in to help. And big TU to Gail Lyster for walking the dogs every morning to wear them out. That was a huge help. It was pretty chaotic for a while here, and it certainly kept Sara distracted from being sick.  My sister Shannon drops by and laundry is done, dishes are done and there is a jar of homemade jelly on the counter. Other sister, Lois, runs for scripts and does errands. Sara has way too many people that LOVE her SO much.  I love her the most and and glad I bought her that Christmas Barbie at the White Elephant in Spokane when she would not leave the store without it.  Costs us $14 bucks. Don't worry, we still have it.
    Stay tuned here.
    Thanks everyone!!



Posted by Colleen

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:)