Monday, July 21, 2014

Summer 2014

    We have all been pretty busy getting our new Dalebout Compound in order and livable. Lots of driving involved for everyone coming and going from Priest River, to Moscow, to Bothell, to Coeur d'Alene, and oh yeah, Doctor appointments! in Spokane. You can get a lot of shopping done in 4 counties.  Still going to Cancer Care Northwest in Spokane quite often for treatments. Sara could not get chemo for almost 5 weeks due to low blood counts. Radiation really takes a toll. She also had a bone marrow test to be sure her Mother platelet cells were intact. Shanna, step in any time for "the rest of the story". Seems only Shanna and Sara can make a boggled bone marrow test entertaining. After a lot of complications with shots and insurance changes and weird appointments, she is in getting chemo today with Shanna as her assistant. We have finally determined how she gets so much done while feeling so crappy, anyone within a 5 mile radius automatically becomes "her assistant". Whatever, it works, we have a wonderful house in South Sandpoint just 2 blocks from 3rd Street Pier, freshly painted inside and out.  We have made ourselves {6 kids, 8 adults, 3 dogs} and Sara very comfortable. The backyard looks like a flea market going on.  Jorge had to go back to San Diego for a while, but cooked up a storm while he was here and took excellent care of Sara. He is super!
    Stylebar has officially opened in Coeur d' Alene. The Daleboat has had several '3 hour tours'. So, we may be moving a little slower this summer due to all the commotion, but we are still kicking some cancerass. We are all like the sand in the bottom toys where when you knock them down they pop right back up. Except Shannon. She broke her leg and is not moving too fast yet. She is getting 'fire' painted on the side of her roller chair, though, graffiti style.
    Sara's radiation worked well on the lymph glands, but due to lower doses of  chemo the other tumors went a little crazy, so Dr. Lin and Dr. Sienko are getting them back under control, then re-evaluating the situation. She was going in for Nuepogen shots to raise her counts, but finally got insurance approved to get the script at home and give them to herself.  She still goes to Seattle regularly and will continue to do that.
    Sara is pretty comfy in her new house and happy to be back in the groove in Sandpoint.  We have had so much help in making this happen. All of you who have helped cannot imagine how much I appreciate it. Everyone else does, too, but I really do!  You are all AMAZING!
     Everyone is AWESOME! Now go Summerize!

Sunday, April 27, 2014

Star Trek Style

   So, living with your parents is not as much fun as it sounds, said Sara D. But as far as getting to treatments and consolidating cooking and cleaning it has been nice. Sara has begun another round of radiation and chemo at Cancer Care Northwest in Spokane. It is about an hour drive {50 minutes for me...} from our house in Priest River so it is not bad with her Dad and me and helpful friends to get her there five days a week for the next 6 to 8 weeks.  Dr. Call, her radiologist, is very positive about the outcome of the radiation treatments with the monitored chemo. To keep the radiation and chemo balanced so it is not too much, but still kicking some major behind is a real challenge for all three doctors. Her cancer is radiation responsive.  Dr. Lin and Dr. Sienko have let her begin an oral chemo along with the intravenous one to see how she responds. The oral chemotherapy is easier and eliminates time in the chair being hooked up which allows Sara more freedom. The nurses at CCNW also talked her into getting a port which was a hard decision but her veins are collapsing.  I have to say here that the nurses were very gentle with the needle poking as long as they could.
    After a PET scan they determined first of all to radiate the tumors in her neck area and try to obliterate them while the chemo will be shrinking the tumors in her abdomen area. Then they will blast those tumors with radiation and a direct line of radiation beads to the main tumor than is stubborn as heck. The side effects of all this are not pleasant, needless to say. Sara may experience a sunburn effect on her skin and inside her throat. Which can be helped with some meds and good ol' Aloe Vera which we have in large quantities.
    Right now, she is doing pretty good and feeling strong, so we are going into this with guns a blazing. Look out you stupid tumors! We are pretty sick and tired of you interfering with Sara D. and Sarah C. trying to get their new business, STYLEBAR, up and running. Also, Kate Lyster and Sara are opening up INDIGOINMOTION May 3. Not to mention we have tentatively purchased a HOUSE in Sandpoint and are ready to move Sara in.  It will be our new family compound where we can all congregate, stir up trouble and make a lot of noise. Maybe this would be a good time to say you cannot un-shrink a sweater. Sorry! I have to tell you here, Sara, because I cannot bear to see the look on your face. {Be quiet, Shanna! I see your eyes rolling!}
    These next weeks are certainly going to be stressful, but to get rid of these vicious tumors and get on a maintenance treatment is the goal.  Then Sara can just get on with her life without everyone hovering.
    Also, Bentley has been diagnosed with congestive heart failure. He got an ultra sound and is on medication. The ultrasound revealed he has a tumor on the left side of his heart. We can't help but think that wonderful Bentley is trying to take on Sara's cancer in his own way. He is happy and cheerful so we are just going to keep him that way with the meds. Never underestimate the power of your pets love.
     Thanks to everyone. Community Cancer Services in Sandpoint for the gas cards. Big help! Thanks to Dr. Lin, Dr. Call and Dr. Sienko and all their staff. Congratulations to Dr. Lin for his award in cancer research. We are so lucky to have the best on our side. See you at our new house! So exciting. Thanks universe. I guess Judy was right.

Love to all! 

Posted by Colleen

Sunday, March 30, 2014

Today is my BIRTHDAY..... dadadadadada!

I was told a long time ago your birthday is a time for reflection.....  since I heard this I have taken that to heart and reflected.  Even though my mantra is to live in the NOW these days, to keep yourself in check to reflect time to time is important.... hence taking time to reflect once a year on your birthday is perfect.

Reflection into the last year, the biggest take away is instead of trying to manage everything...... let it just happen:) WOW is that hard.  The other thing, I continue to be flabbergasted by how broken thorough communication between medical facilities, with the doctors and patients..... hence you can't let go of managing EVERYTHING.

I never realized how much I like to micromanage, and I tried to be some what conscience of this... apologies to my teams I've worked with throughout the years at CWC.  Recognizing your doing it, and stopping yourself it hard.... especially with giving advice to others.... STOP breathe through and just go with it.  It all works out in the end... and with WAY less stress:)  In reflection I notice the new people that have come into my life this last year are just this way, relaxed don't manage... life will happen just as it's supposed to if the intention is set on the right path.

Communication in the medical field, especially in the USofA, and how inefficient it is... quite honestly is BEYOND me.... here come MS. Micromanage a little... but seriously were talking about people's lives!  I am coherent, with follow up emails, phone calls and even walking directly into facilities.... and STILL the stuff falls through the cracks.  This last year not only with myself, but with my family and very bestest friends, the medical professionals have let them down.  All I can say, finding not only the doctor who you trust and takes YOU seriously is SO important, but also his/her team is just as important for proper communication.  Maybe some of that money Obama is saving cutting our troops and space exploration can go to making computers in the medical community talk to each other.... oh wait that would mean our government would have to be able to build a website that works and then be in control of communication... never mind.

Today is my birthday, I welcome 37, thank you lord for giving me another year on this earth.  Thank you to my parents for letting their 37 year old daughter live with them and they take care of her... (I'm pretty sure this is backwards).  Thank you to my beautiful friends and family that continue to support me and my continuing change to treatments that effect us all... Thank you to my dogs who are always glad to see me no matter how many times I leave them and love me always even though I'm usually sick when I'm with them.  And today a special shout out to the lovely man who is taking me on a birthday date to a fancy Japanese restaurant in P.Vallarta.... I am so mucho grateful to have met him in my life... thanks to a lovely wedding of two beautiful people Kate and Dallas in this beautiful place Sayulita, Mexico that I have been blessed to spend most of the winter between treatments, Stylebar and Indigo.  Mucho besos Jorge and to all:)

March 30, 2014

    Today is Sara D.'s birthday and I want to say how proud I am to be the parental figure of one of the most wonderful, generous, kind, smart, beautiful, courageous, inspirational, motivated, exceptional person that I know. Happy Birthday dear daughter!
    She is in Sayulita where she spends her time between treatments. She will return soon for a PET scan then on to more treatments that should really knock this cancer down. We discovered a different anti nausea med that  seems to work more efficiently. Or the Mexican sunshine and blue ocean are helping. Whatever it is, her chromagranin is at 128 last count, which is amazing.
    So today is a good day and here's to you, dudette!  Have a good one.

your Mother,
Colleen Dalebout

Friday, February 7, 2014

The carrot chasing continues...... Anniversary #3

The carrot chasing continues...... Anniversary #3

3 years...... I have officially passed the first statistical year barrier.  If you had asked me Feb. 7, 2011 where I thought I'd be in 3 years..... well lets just say it's mind blowing what I didn't know was coming.  For those who are waiting for the "someday" or the "when I grow up".... man just know 3 years ago my someday list was BIG, now statistically I have 3-8 years to get it done, all on a super low fuel count.... 

I chased the carrot for a long time.... I worked hard, I climbed the corporate ladder, I traveled frequently to wonderful cities and worked with wonderful talented people, ate at yummy hip restaurants, upgraded to first class, I paid my debts, I purchased a house, owned my car, had minimal credit card debt, I had insurance, retirement funds, stocks..... I thought I did it all right.
I've lost my house, my career came to a sudden halt, child bearing is no longer an option and I depend on help to get me places 85% of the time, my annual income has been cut off at the legs, debt scares me and the word bankruptcy has come up many times in 3 years.....   My employment after 18 years with Coldwater Creek will come to an official end Feb. 22...... Some would say that I've gone down hill..... I would say perspective has changed.

Grateful is still my word, I am grateful for how my perspective has evolved all in the name of cancer.  But I will say optimism is hard to keep on the forefront.  You get broken down a lot in this battle, and I don't use the word battle lightly.... the last few months battle has truly been what I feel this is.... and I often feel I'm loosing it.  Unfortunately I can understand why people stop fighting.... I feel better when I'm not fighting it (medically speaking), unfortunately that's when you get sicker:(

Don't take advantage of being able to plan your dentist appointment a few weeks in advance.... sometimes life feels mundane, week-after-week..... believe me sometimes the security in that is nice. I used to think weeks would just fly by like clockwork, now I miss the clockwork.  Little things, like waking up, getting in the shower, dressed, off to work..... YOU KIDDING! I would have to sit down 3 times and nap by the time I sat at my desk.  If you had asked me 3 years ago..... wow how things change.

My friend Suzanne Tugman said to me the other day.... "Sara your living for the now", and she's right.  When I DO feel good and am not sleeping, I want to DO... I'm a DO'er and it drives me NUTS  not be DO'ing.  I've had to start cutting things out of my day, like phone calls for medical & bill paying only, I skip conditioner in the shower so I don't have to stand that long, carrying a purse is exhausting, budgeting how many times I have to go up stairs in a day.  Because I can't plan week to week what I'm doing, where I'll be or how I'll be feeling.... I've embraced living in the now. So days I wake up, shower and eat.... my head reeeeels.... I wonder if I shouldn't grab my jump bag, head to the airport and go somewhere really quick.  But even if it means being productive running my businesses with my besties so they know they can count on me.... I am grateful I woke up and felt decent.

With all social medias and people posting quotes here and there about living life to the fullest and don't let days go by..... I know we sometimes become numb to these, but believe me when your living it, those cliche's are all to real.
The carrot now?  I am chasing a treatment plan, something to keep me here... not to mention blow those statistics out of the water.  And I am so grateful to those who continue to help me chase this carrot... because for me to get this carrot I need your help.  I love my family so much, and without mom, dad, sissy, Wes, Sarah & Marc, Dr. Lin.... and the countless others this battle would not have a chance.  Thank you from the bottom of my heart.

I sat in the shower this morning, letting conditioner finally saturate my hair, hair that I'm so grateful to have, and wondered what I would be writing on anniversary #4.  I wonder how far I will get chasing this carrot.....

Love to all,

PS: A special woo-hoo going out to you Birgett, I think of you all the time:)
PSS: GO Stylebar!
PSSS: Hoping to be sitting back on the beach below between treatment with a certain someone... thank you Kate & Dallas!

Monday, January 6, 2014

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

Thursday, November 7, 2013

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!