Saturday, October 11, 2014
October 11, 2014
Did you hear that thunder? That was Sara D. physically leaving this earth. It was not big enough for her adventurous Heart and Spirit. Good riddance you stupid cancer! Sara kicked your ass by going off into the universe where there is NO cancer. And this is the end of this blog. I may create a book of the blog someday because Sara's story is one of a kind. No body...ever....accomplished what she did and truly touched so many hearts. All of us should be grateful she took a bullet for us. So we can quitcherbitchin' and wear something crazy, and go some where fun, and smile like ya mean it. See you later alligator.
Thursday, October 2, 2014
Fall 2014
Hi everyone. I just want to let you all know what is going on. We were going to Spokane Cancer Care Northwest for radiation 5 days a week for almost 7 weeks. The radiation eliminated the cancer invading Sara's head which was causing extreme discomfort. Now, the pain is from the tumors. Dr. Lin and Dr. Sienko are going to have a conversation about how to proceed. We are never going to stop kicking cancers {f-ing} ass. {Yes, I really said that. No more Mrs. Nice guy}
Sara is home at her own house in Sandpoint and has everything she needs. Shanna and her whole fam damily moved to Sandpoint a few blocks away so she can boss Sara around full time. I am staying here with her and have a slew of elves to help me when I need it. Jorge is here and Sara is very happy about that.
Our main concern is keeping her pain under control. We have several nurses helping us with that. Sara needs all her energy to get better so we have to keep it quiet around here. I know she has a kerbllion friends who love her almost as much as her family. I cannot ever express enough how proud I am of Sara D. for what she has gone through and still come out smiling. Thank you over and over for the nice stuff you all have done. Keep those positive vibrations bouncing around out there.
Goodnite!
Posted by Colleen
Sara is home at her own house in Sandpoint and has everything she needs. Shanna and her whole fam damily moved to Sandpoint a few blocks away so she can boss Sara around full time. I am staying here with her and have a slew of elves to help me when I need it. Jorge is here and Sara is very happy about that.
Our main concern is keeping her pain under control. We have several nurses helping us with that. Sara needs all her energy to get better so we have to keep it quiet around here. I know she has a kerbllion friends who love her almost as much as her family. I cannot ever express enough how proud I am of Sara D. for what she has gone through and still come out smiling. Thank you over and over for the nice stuff you all have done. Keep those positive vibrations bouncing around out there.
Goodnite!
Posted by Colleen
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!
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
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:)
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.
Love,
your Mother,
Colleen.....
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.
NOW:
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,
Sara
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!
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.
NOW:
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,
Sara
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
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!
~S
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
Thursday, October 24, 2013
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
Monday, October 7, 2013
Friday, October 4, 2013
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!
Friday, September 13, 2013
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
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
Thursday, June 13, 2013
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....
Bentley, Lou and I @ Lake Louise:)
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:)
Friday, April 26, 2013
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
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
Monday, February 18, 2013
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
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
Thursday, February 7, 2013
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
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
Saturday, January 12, 2013
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
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
Thursday, December 20, 2012
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
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.
posted by Colleen
Friday, December 7, 2012
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!
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!
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