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Snowflake

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  1. Like
    Snowflake got a reaction from ColleenRae in How long do you have to survive to be a Survivor?   
    Here is my stance on survivorship:
    I had read what Don posted, that if you don't die on the spot with the diagnosis, from that point on, you are a survivor. I read it, but counted from the time I had surgery and that nasty little critter was yanked out along with some good tissue and left behind some really scary mental monsters to deal with.
    I read about two-year statistics and five-year statistics and felt that reaching certain milestones would "allow me to live" again and reclaim my old life. I was wrong.
    I beat the odds that were stacked against me and made it to the two-year point earlier this year. For TWO YEARS, I felt as though I was living on borrowed time, that I had lived through diagnosis and surgery but that I was merely spinning my wheels because it would probably come back...
    I WASTED two freakin' years waiting for the other shoe to drop. Not the whole time, mind you, I took in weddings and grandbabies and sixth grade graduation and planted flowers that I fully expected to see bloom, but in the back of my mind, that monster was still growling and getting loose at times...
    I am now two years, six months and five days from diagnosis. I've been through two winters and autumns, three springs, three summers. My husband and I have married off his two daughters, welcomed three grandbabies, attended a high school graduation, adopted a puppy and built a new house. We have also buried two friends, two grandparents, an uncle and a beloved dog.
    Life HAS gone on, although the cancer was a pit stop for me, life continued to zoom on at a fast pace. I am now the mother of a teenage boy with many rough days to come, I'm sure. Instead of wondering if I'm going to be around for all the new milestones in his life, I'm going full steam with all plans that I WILL be here, there is no other option.
    Oh, the monster? He wrestles out around test time and then I beat him back into the corner and duct tape him up to his eyeballs. We are not friends, the monster and I. He represents too much negativity and doubt and there is no room for him in my life.
    Anyone newly on this journey should understand that the wake-up call is a reminder not to WAIT to live, but to get on with the business of living because NO ONE KNOWS the date written as the end of their days in the big Book of Life. Beware of beer trucks!
    ...and I really didn't "waste" that time, I battled a monster in my mind that assured me I wouldn't live two years - and the monster was wrong. I DID live, I did participate in life, but many of my perceptions changed. I'm not afraid of much anymore, and that certainly changes how I deal with difficult people that live by intimidation. I don't have a "career", I have a job. They pay me, I work. I don't want to travel and be away from my family, I just want insurance and a way to earn money. If I died tomorrow, my workplace would be looking for my replacement the next day - my family could never replace me. Guess where my heart is?
    Time to live...
    Becky
  2. Like
    Snowflake got a reaction from Sharon k in How long do you have to survive to be a Survivor?   
    Here is my stance on survivorship:
    I had read what Don posted, that if you don't die on the spot with the diagnosis, from that point on, you are a survivor. I read it, but counted from the time I had surgery and that nasty little critter was yanked out along with some good tissue and left behind some really scary mental monsters to deal with.
    I read about two-year statistics and five-year statistics and felt that reaching certain milestones would "allow me to live" again and reclaim my old life. I was wrong.
    I beat the odds that were stacked against me and made it to the two-year point earlier this year. For TWO YEARS, I felt as though I was living on borrowed time, that I had lived through diagnosis and surgery but that I was merely spinning my wheels because it would probably come back...
    I WASTED two freakin' years waiting for the other shoe to drop. Not the whole time, mind you, I took in weddings and grandbabies and sixth grade graduation and planted flowers that I fully expected to see bloom, but in the back of my mind, that monster was still growling and getting loose at times...
    I am now two years, six months and five days from diagnosis. I've been through two winters and autumns, three springs, three summers. My husband and I have married off his two daughters, welcomed three grandbabies, attended a high school graduation, adopted a puppy and built a new house. We have also buried two friends, two grandparents, an uncle and a beloved dog.
    Life HAS gone on, although the cancer was a pit stop for me, life continued to zoom on at a fast pace. I am now the mother of a teenage boy with many rough days to come, I'm sure. Instead of wondering if I'm going to be around for all the new milestones in his life, I'm going full steam with all plans that I WILL be here, there is no other option.
    Oh, the monster? He wrestles out around test time and then I beat him back into the corner and duct tape him up to his eyeballs. We are not friends, the monster and I. He represents too much negativity and doubt and there is no room for him in my life.
    Anyone newly on this journey should understand that the wake-up call is a reminder not to WAIT to live, but to get on with the business of living because NO ONE KNOWS the date written as the end of their days in the big Book of Life. Beware of beer trucks!
    ...and I really didn't "waste" that time, I battled a monster in my mind that assured me I wouldn't live two years - and the monster was wrong. I DID live, I did participate in life, but many of my perceptions changed. I'm not afraid of much anymore, and that certainly changes how I deal with difficult people that live by intimidation. I don't have a "career", I have a job. They pay me, I work. I don't want to travel and be away from my family, I just want insurance and a way to earn money. If I died tomorrow, my workplace would be looking for my replacement the next day - my family could never replace me. Guess where my heart is?
    Time to live...
    Becky
  3. Like
    Snowflake got a reaction from jinx in How long do you have to survive to be a Survivor?   
    Here is my stance on survivorship:
    I had read what Don posted, that if you don't die on the spot with the diagnosis, from that point on, you are a survivor. I read it, but counted from the time I had surgery and that nasty little critter was yanked out along with some good tissue and left behind some really scary mental monsters to deal with.
    I read about two-year statistics and five-year statistics and felt that reaching certain milestones would "allow me to live" again and reclaim my old life. I was wrong.
    I beat the odds that were stacked against me and made it to the two-year point earlier this year. For TWO YEARS, I felt as though I was living on borrowed time, that I had lived through diagnosis and surgery but that I was merely spinning my wheels because it would probably come back...
    I WASTED two freakin' years waiting for the other shoe to drop. Not the whole time, mind you, I took in weddings and grandbabies and sixth grade graduation and planted flowers that I fully expected to see bloom, but in the back of my mind, that monster was still growling and getting loose at times...
    I am now two years, six months and five days from diagnosis. I've been through two winters and autumns, three springs, three summers. My husband and I have married off his two daughters, welcomed three grandbabies, attended a high school graduation, adopted a puppy and built a new house. We have also buried two friends, two grandparents, an uncle and a beloved dog.
    Life HAS gone on, although the cancer was a pit stop for me, life continued to zoom on at a fast pace. I am now the mother of a teenage boy with many rough days to come, I'm sure. Instead of wondering if I'm going to be around for all the new milestones in his life, I'm going full steam with all plans that I WILL be here, there is no other option.
    Oh, the monster? He wrestles out around test time and then I beat him back into the corner and duct tape him up to his eyeballs. We are not friends, the monster and I. He represents too much negativity and doubt and there is no room for him in my life.
    Anyone newly on this journey should understand that the wake-up call is a reminder not to WAIT to live, but to get on with the business of living because NO ONE KNOWS the date written as the end of their days in the big Book of Life. Beware of beer trucks!
    ...and I really didn't "waste" that time, I battled a monster in my mind that assured me I wouldn't live two years - and the monster was wrong. I DID live, I did participate in life, but many of my perceptions changed. I'm not afraid of much anymore, and that certainly changes how I deal with difficult people that live by intimidation. I don't have a "career", I have a job. They pay me, I work. I don't want to travel and be away from my family, I just want insurance and a way to earn money. If I died tomorrow, my workplace would be looking for my replacement the next day - my family could never replace me. Guess where my heart is?
    Time to live...
    Becky
  4. Like
    Snowflake got a reaction from Julie in SoCal in Pain between shoulder blades?   
    I had pain after surgery between my shoulder blades because I couldn't handle wearing the bras I had in my drawer. I started wearing a bra for mastectomy patients and got the support I needed without underwires and that pain eased.
  5. Like
    Snowflake got a reaction from Mally in Re-Introducing myself   
    Sarah,
     
    I had a recurrence after eleven years just three years ago. I just shook it off and continued my usual life...
     
    Yeah, right. I curled up in a ball and cried for a week straight. Then, I found out not only was there a tumor behind my clavicle, but that it had a friend in my brain. Ugh. I am STILL fighting depression/anxiety over this new detour. I can function, I am taking happy pills to drag myself out of a sobbing mass.
    On the bright side, stage IV is immediate approval for Disability, there's just that first six months of no income. I can nap any time I want to, no job to go off to. 
     
    I'm in the middle of the mitten and my hospital is affiliated with U of M. I had genetic testing and have the ALK mutation so have been on Xalkori since radiation ended. I am glad my trusted oncologist has this resource and am happy to share that there have been many improvements since my last trip in 2003.
    Hang in there, big girls DO cry, but they also take care of business and get extra help when needed. Better Living through chemistry.
    Good luck,
    Becky 
  6. Like
    Snowflake got a reaction from KatieB in Re-Introducing myself   
    Sarah,
     
    I had a recurrence after eleven years just three years ago. I just shook it off and continued my usual life...
     
    Yeah, right. I curled up in a ball and cried for a week straight. Then, I found out not only was there a tumor behind my clavicle, but that it had a friend in my brain. Ugh. I am STILL fighting depression/anxiety over this new detour. I can function, I am taking happy pills to drag myself out of a sobbing mass.
    On the bright side, stage IV is immediate approval for Disability, there's just that first six months of no income. I can nap any time I want to, no job to go off to. 
     
    I'm in the middle of the mitten and my hospital is affiliated with U of M. I had genetic testing and have the ALK mutation so have been on Xalkori since radiation ended. I am glad my trusted oncologist has this resource and am happy to share that there have been many improvements since my last trip in 2003.
    Hang in there, big girls DO cry, but they also take care of business and get extra help when needed. Better Living through chemistry.
    Good luck,
    Becky 
  7. Like
    Snowflake got a reaction from Tom Galli in Re-Introducing myself   
    Sarah,
     
    I had a recurrence after eleven years just three years ago. I just shook it off and continued my usual life...
     
    Yeah, right. I curled up in a ball and cried for a week straight. Then, I found out not only was there a tumor behind my clavicle, but that it had a friend in my brain. Ugh. I am STILL fighting depression/anxiety over this new detour. I can function, I am taking happy pills to drag myself out of a sobbing mass.
    On the bright side, stage IV is immediate approval for Disability, there's just that first six months of no income. I can nap any time I want to, no job to go off to. 
     
    I'm in the middle of the mitten and my hospital is affiliated with U of M. I had genetic testing and have the ALK mutation so have been on Xalkori since radiation ended. I am glad my trusted oncologist has this resource and am happy to share that there have been many improvements since my last trip in 2003.
    Hang in there, big girls DO cry, but they also take care of business and get extra help when needed. Better Living through chemistry.
    Good luck,
    Becky 
  8. Like
    Snowflake got a reaction from Isunique in Re-Introducing myself   
    Sarah,
     
    I had a recurrence after eleven years just three years ago. I just shook it off and continued my usual life...
     
    Yeah, right. I curled up in a ball and cried for a week straight. Then, I found out not only was there a tumor behind my clavicle, but that it had a friend in my brain. Ugh. I am STILL fighting depression/anxiety over this new detour. I can function, I am taking happy pills to drag myself out of a sobbing mass.
    On the bright side, stage IV is immediate approval for Disability, there's just that first six months of no income. I can nap any time I want to, no job to go off to. 
     
    I'm in the middle of the mitten and my hospital is affiliated with U of M. I had genetic testing and have the ALK mutation so have been on Xalkori since radiation ended. I am glad my trusted oncologist has this resource and am happy to share that there have been many improvements since my last trip in 2003.
    Hang in there, big girls DO cry, but they also take care of business and get extra help when needed. Better Living through chemistry.
    Good luck,
    Becky 
  9. Like
    Snowflake got a reaction from LaurenH in 5 year survival percentage   
    100% of the "me" in this whole world survived 5 years with a projected expectancy of 12%.

    A few years ago, I took a college statistics class....sooooo of many ways to report the same information to put a different spin on the info. Seriously.

    Skip the numbers, they cause indigestion.

    P.S. Currently 14 years out from initial diagnosis, 3 years from recurrence.

    Sent from my SAMSUNG-SM-G930A using Tapatalk


  10. Like
    Snowflake got a reaction from Tom Galli in 5 year survival percentage   
    100% of the "me" in this whole world survived 5 years with a projected expectancy of 12%.

    A few years ago, I took a college statistics class....sooooo of many ways to report the same information to put a different spin on the info. Seriously.

    Skip the numbers, they cause indigestion.

    P.S. Currently 14 years out from initial diagnosis, 3 years from recurrence.

    Sent from my SAMSUNG-SM-G930A using Tapatalk


  11. Like
    Snowflake got a reaction from Susan Cornett in 5 year survival percentage   
    100% of the "me" in this whole world survived 5 years with a projected expectancy of 12%.

    A few years ago, I took a college statistics class....sooooo of many ways to report the same information to put a different spin on the info. Seriously.

    Skip the numbers, they cause indigestion.

    P.S. Currently 14 years out from initial diagnosis, 3 years from recurrence.

    Sent from my SAMSUNG-SM-G930A using Tapatalk


  12. Like
    Snowflake got a reaction from Tom Galli in Newly diagnosed   
    Hi, Brandon,
     
    I was diagnosed IIIA in 2003 at 34. Lifelong nonsmoker. I had surgery, then radiation and two months of Iressa followed by years of monitoring.  After five years, I saw the oncologist once a year. 
    At the time I was diagnosed, chemo was not standard after (or before) surgery. 
    Eleven years later at my annual checkup, the oncologist touched a spot on my neck that hurt and he was concerned. Long story short, it was back. I've been restaged to IV. I've had surgery to clean out what could be removed in my neck, and gamma knife to treat a brain tumor. I've also gone through another round of radiation and chemo. 
    My oncologist sent out for genetic testing and I'm a happy mutant. I am currently taking Xalkori and holding.
    Biggest thing to learn is when it is too big to handle alone and talk to your doctor about anti-anxiety medication and/or antidepressants. Get the feeling of panic controlled so your brain can process the information you are being given.
    Hang in there, you're still lucky, hold on to that. Cowboy up. 
  13. Like
    Snowflake got a reaction from DonnaC in ...and then there's the second shoe.   
    I have an introduction, but all things considered, it's probably easier to just submit a new one.
    2014 was one really crappy year. My annual testing, after eleven years cancer-free, was at the end of April. May 5, I am in with my oncologist and he is explaining to me that it's been long enough that I can just follow up with my GP. As he's talking, he's doing the neck lymph node touchy-feely exam...and hits a tender spot at my collar bone.
    He says he doesn't like that, wants tests. He looks concerned, I tell him he sees cancer everywhere, that's his job, but I'm not going to worry until there's something to worry about. I am in for a CT on Thursday and then consult with him on Friday.
    Need a better look at this swollen lymphynode, PET on Tuesday, poke biopsy on Wednesday. Surgical biopsy on Monday and the unmistakable sound of manure hitting the oscillator.
    It's a tumor with an extremely slow growth rate - in fact, he thinks it came from the original tumor. The entire tumor cannot be removed by the ENT that performed the procedure, it's touching the carotid and the jugular vein.
    Gee, maybe we should check out my head...
    June 3, meeting with radiation oncologist to see if I am a candidate for radiation of the unclear margins. During this meeting, he's not as concerned with that as the lesion in my brain. June 6 Gamma Knife, radiation and chemo start June 10.
    Many trials and tribulations, but still kicking. Now stage IV, but like age and weight, it's just a number.
    My oncologist tells me I'm not normal - I've never tried to be. He says a recurrence after eleven years is unheard of. Yep. Blowing up stats left and right!
    On the bright side, I no longer have to go to work any more and am enjoying the fur kids!
    The plan is to beat this monster back under the bed with my Louisville Slugger.
    Snowflake
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