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KatieB

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  1. Like
    KatieB got a reaction from Cheryncp123 for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  2. Like
    KatieB got a reaction from Mark C for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  3. Like
    KatieB got a reaction from PaulaC for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  4. Like
    KatieB reacted to Susan Cornett for a blog entry, Cancerversary   
    Today, I happily paint two of my toes red, to celebrate two years of being a survivor.  Some days I ask myself it has really only been 2 years because it feels like I got the diagnosis so long ago.  Lots of scans and needles and chemo and radiation and....I'm still here!  
    I woke up this morning, very cheerful, almost like I was celebrating a birthday.  I realize that EVERY SINGLE DAY is a gift, whether we have lung cancer or not, but that cancer seems to make each day that much more important.  While I was thinking about everything today, I was overcome with emotion.  I know that I am blessed to have as much time as I've had.  I think about the friends I've made in this "club" that are no longer here.  For those friends, and for the rest of us, we continue to choose life.  

  5. Like
    KatieB reacted to Tom Galli for a blog entry, Ninety Percent Mental   
    Summer has ended and baseball is in World Series mode.  I’m a long suffering Philadelphia Phillies fan — a Phanatic!  To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day.  These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.
    Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.
    Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment.  Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.”  Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?
    First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.
    Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days.  Too many in a row and I need help.  Fortunately, my wife is a godsend. Plan to have someone trusted close by.  
    I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days.  There is disagreement, branding, insult and anger.  My spin cycle goes one step farther to pain.  If I walk away, I may have a good day.  I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.
    My new normal life is both challenging and enjoyable.  Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”
    Stay the course.
  6. Like
    KatieB reacted to Tom Galli for a blog entry, Fourteen Years, Three Right Feet!   
    This is my fourteenth anniversary surviving a lung cancer diagnosis.  Granddaughter Charlett's decorated toes join mine to keep our right feet forward! I paint my toes every year as a celebration of the joy life brings. In early treatment, there was no joy.  There was fear, frustration, pain, uncertainty and scanziety. I'd not yet discovered Dr. Phillip Bearman who taught me the reason for lung cancer treatment -- achieving extended life.  Phil decided he would live every moment to the fullest despite the rigors of treatment, and he'd celebrate every year of survival with a painted red toenail.  He couldn't control his lung cancer, but he could control the way he felt about his lung cancer.  I started living when I internalized his message.  My first paint job was at my third anniversary and I'll never miss another.
    I am a lung cancer survivor. My message for those in treatment is twofold: enjoy the life extension treatment provides and if I can live, so can you.
    Stay the course.

  7. Like
    KatieB got a reaction from Judy M. for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  8. Like
    KatieB got a reaction from Kathy P. for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  9. Like
    KatieB reacted to DanielleP for a blog entry, On Routines, Resets, and Resources: Part 3 of 3   
    Part 3: Resources
    One word that is perhaps overused in the professional cancer services field is a word that is also overused in many other humanitarian fields: “resource.” Sometimes, it seems like a catch-all. What do you guys offer? We offer resources! Hm.
    What does “resource” mean to you?
    To me, it means something that is drawn from by someone in need of help. Something that is stocked and available to give concrete assistance in a particular situation, and is either infinite in itself, or can be replenished.
    A replenishable replenisher, if you will!
    When I see fellow caregivers ask other fellow caregivers “what can I do? How can I help you?,” the answer is always the same. It’s an answer we see every time we ask the #LCCaregiver Twitter chat community the same question: what can your CG family do for you? What is the best way we can be a resource for each other? What can we do for you that is not already being done for you?
    The answer is so profoundly simple: be there. Listen. Lend a supportive ear. Be a safe space for venting. Sympathize.
    As much as we all sincerely want to “do more” or “be more” for those who are in our same situation, it seems as though the most important release we can expect from within the “pack” is the one thing we can’t really get from anyone outside the “pack:” understanding. As with any other experience in life, the bond formed when we realize that someone sincerely feels the same way we are feeling in response to the same stimulus is both profound and instant.
    Only our fellow CGs “get” how we have time to do the shopping and the laundry, but do not have the time to answer the texts or get to the post office (or vice versa), without requiring an accounting of our hours. I swear, my dear non-CG friends and family who may see this, that I know you do not require timesheets from me, but sometimes it feels as if you do. Meanwhile, people who have undertaken a similar journey are not surprised at all when I explain that the day somehow did not actually contain 24 hours as promised on the packaging.
    As useful (and awesome!) as it would be to live in a place where we could all physically pitch in for our fellow carers (a caregiving co-op of trusted co-carers? Say that five times fast…), it is MORE than enough to lend a shoulder and an “I hear you.” Your support is enough. YOU are enough. Something you have to say could make all the difference in the world for a new or overwhelmed caregiver.
    So: the number one resource that caregivers have are fellow caregivers. Find them. Reach out. You’re in the right place to start, here on the LCSC: use the Caregivers message board.
    Use the “LUNGevity Caregivers” Facebook group here: http://www.facebook.com/groups/LungCancerCaregivers/. 
    Come find a buddy in the LifeLine program here: http://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline.
    Come to our monthly #LCCaregiver Twitter chats!  
    If you have been doing this a while, find someone who is new to the situation. Someone who needs to be told “it’s okay. I promise. You will find the new normal. It will become routine.
    I’m here.”
  10. Like
    KatieB reacted to LaurenH for a blog entry, Pauline Makowski   
    My husband, Allan, died from stage IV lung cancer in June 2009. I was feeling a need to get involved with an organization dealing specifically with lung cancer.  I researched LUNGevity, and thought it was a very worthwhile organization.
    My first experience with LUNGevity was in November 2009. At the time, my daughter, Stephanie was a college student in NYC. She formed a team for LUNGevity’s Walk to Beat Lung Cancer, which later became Breathe Deep NYC.  My son and I joined Stephanie and her roommates at the walk. I was very impressed with the event and the volunteers.  We continued to walk and volunteer for the NYC event through 2013. Stephanie was on the committee for the walk during her college years.
    We wanted to start a Breathe Deep NEPA event in our community. Northeastern Pennsylvania is an area with an above-average rate of lung cancer. So many lives are touched by this disease—those of the patient, the survivors, families, and friends. My major goal is to bring awareness to the community about lung cancer. The event also brings people impacted by the disease together to help raise awareness and critical funds.
    The most rewarding thing about being a coordinator is the great feeling that I am helping lung cancer patients by raising funds to help others survive.  I was so devastated by not being able to help my husband.  Hope is my mantra.
    I hope that our efforts will continue to fund research to find an early detection test, most important, and more therapy treatments.  Also the support LUNGevity offers to patients, families and caregivers.
     

  11. Like
    KatieB got a reaction from LaurenH for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  12. Like
    KatieB got a reaction from Pegi for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  13. Like
    KatieB got a reaction from Steff for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  14. Like
    KatieB got a reaction from t_beanes for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  15. Like
    KatieB got a reaction from Tom Galli for a blog entry, Don't Help Me. Please Help Me.   
    Don't help me.
    I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.  
    Please help me.  
    I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed.
    It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.  
    To their credit how can they know I need help when I don't look or act "sick"? 
    Ask me.
     
     

     
  16. Like
    KatieB reacted to Judy M. for a blog entry, My Stage IV S.B.R.T. Experience   
    In March of this year I was diagnosed with stage IV NSCLC, Adenocarcinoma,  as the result of a case of pneumonia. Already under the care of a Medical Oncologist as the result of having been treated for another type of cancer the previous year. That treatment went well, NED. On my first consultation he explained the standard treatment options for stage IV. What I was hearing ( and said to him), was, "So the bottom line is I'm dead." I have to admit that I taped the consult and was a bit ashamed of myself when I listened later. I actually like my Med. Oncologist but was very aggressive. Finally, he said, "Okay, you're young ( not really), and healthy and respond well to treatment, so let's go for a cure." He had done a study with some other doctors on treating Oligometestatic lung cancer with a curative intent. Oligometestatic means, in my case, that I had a nodule in my left lung and 2 in my right lung, but P.E.T. showed no spread outside my lungs. C.T.'s done since then still do not. Talked with my family and we decided within 24 hours to go with his plan. His plan was to give me S.B.R.T radiation on all 3 tumors followed by chemo. Then hit a snag with Radiology Oncologist. He didn't want to do rhis. His concerns were that it wasn't standard of care ( it has since come into standard of care) and that I'd had 33 standard radiation treatments to my right breast the year before, so he was considering possible toxicity issues. I persisted, my Med. Oncologist persisted, and by God's grave a new doctor had just come on board at my hospital about the time I was diagnosed with extensive experience in S.B.R.T. So, I got my treatment. I had 5 fractions of 1000-1500 centigrays of radiation for a total of 4500-5000 centigrays over a 2 1/2 week period. It was done twice a week. Normally S.B.R.T. is done daily or every other day. I'm thinking my Rad. Oncologist chose to do it this way because of his concern about toxicity. The physicist assured me when I ask that the fractions were too high for the cancer to develop resistance in that length of time. They treated all 3 tumors each time. This took about 1 1/2 hours and I was required to lay totally still the entire time. That was the only difficult part. Had no adverse reactions to the radiation at the time and have not had any to date. Next scheduled for 4 chemo treatments of Cisplatin/Alimta spaced 3 weeks apart. Am one week out from my second treatment. Can't say I've had no side effects from this. You guys know exactly what I mean. Lol. The only scans I've had were brain M.R.I. and 2 abdomen/pelvic C.T.'s since diagnosis. Both were clear. Med. Oncologist plans to scan lungs at the end of chemo as of now. So we will see what we will see. Hoping this works out for me and will also help someone else down the road. Many thanks to Tom Galli for suggesting I do this blog, all his support, and hanging in there with me until I could figure out how to get it done. 
    Judy M.
     
     
  17. Like
    KatieB reacted to LaurenH for a blog entry, Heather Hogan's Story   
    I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate.
    An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010.  Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer.  They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer.
    My world had been turned upside down.  I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine.
    Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease.  This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world.  This was literally a life-saving experience for me and continues to be part of my daily communication. 
    Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers.  Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could!
    My husband and I attended HOPE Summit and that experience has changed my life.  Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate.  
    The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. 
    Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit.
    Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable.  Thank you LUNGevity!

  18. Like
    KatieB reacted to Tom Galli for a blog entry, Second Opinions   
    I had an interesting chat with my general practitioner over the Fourth of July holiday.  He’s a gentleman rancher with an abundance of tomatoes so I brokered an invite to his beautiful ranch to relieve him of his abundance.
    A social cup of coffee segued into a wide ranging conversation about medicine, ranching, politics, engineering and cancer treatment.  Doc has lots of opinions but they are founded on deep study and comparative analysis.  But, unlike most intelligent people, he rarely uses technospeak but rather explains complex topics in easily understood words and concepts. Thus fostering interesting conversation. The topic turned to patients seeking second opinions and physician egos.  His words are worth capturing: “I don’t mind a patient seeking a second opinion…I get paid.”
    Doctors are important people in our society. Our adulation of their skills causes us to forget that in a pay for service system, customers have a right to express dissatisfaction and seek alternative practitioners.  If you don’t like the medical service you pay for, find someone who provides better service.
    Stay the course.
  19. Like
    KatieB got a reaction from Susan Cornett for a blog entry, Permission to Feel   
    I noticed something recently at the in-person support group I facilitate.  
    Caregivers in my group didn't speak up about issues or feelings unless the facilitator or group leader mentioned them first.
    "Like Jan said, I have feelings of ____  too."
    After the third time, it occured to me that caregivers are either waiting to have their feelings validated by someone else or didn't realize they had been feeling those feelings.
    I remember being a caregiver for my father and how all-encompassing that was. Nothing else mattered to me at the time.  Everything was about my dad's cancer, his feelings, his happiness, his peace and comfort.  I don't think I got more than 2-3 hours of sleep a night during those 11 months- there was just so much to do! I completely lost myself and any sense of "me" during my caregiving.  I would never consider taking time for myself, taking a break or openly expressing my frustrations and concerns- that would be selfish- afterall, I wasn't the one in treatment with cancer.  I wasn't the one fighting for my life, right?
    If given the opportunity then, would I have taken advantage of caregiver resources or support groups?  Would I even know what I was feeling or how to describe it?
    Until we are able to have caregiver-only support groups in every community, how can we give caregivers the encouragement or "permission" to put a voice to what they are feeling?  
    How do we as caregivers divorce ourselves from the guilt that accompanies self-care?  
    Thoughts?

  20. Like
    KatieB reacted to DanielleP for a blog entry, HOPE, Support, and "Best Laid Plans"   
    Hello, my dear friends!
    I. Have. Missed. You!
    It is so tempting, in my relationship with caregiving, to take on blame. Blame myself for this or that. Plans didn’t go off accordingly? It’s my fault. Time got away from me without my control? Oh, that’s my fault, too. Sign me up!
    Since my last post, our “best laid plans” were thrown out the window. Forcefully. To be totally real with you, my friends, I had wanted so badly to post about ALL THE HOPE in May. I wanted to fill your inboxes with notifications that there was a new post here every day. I wanted to fill your “Caregiver Quiver” (ooooh, I like that, I’m gonna use that!) with so many HOPE arrows that you would have a weapon to combat every moment of hopelessness.
    After all, May was Lung Cancer Hope Month (thanks to LUNGevity!). That’s huge. For a diagnosis that used to be like a flipped hourglass, any dose of HOPE can make the difference between having or losing the will to fight. We who spend every day in the LC community know there is SO MUCH HOPE, and yet Society At Large still sees the hourglass.
    So: I had wanted so badly to fill your May with links and resources and information on the newest and best stories and breakthroughs and answers. That was my “best laid plan.”
    But then, my dad ended up in the hospital for the entire month of May. My mom is my LC patient, but my dad has his own chronic health issues that require frequent hospital stays.
    You know the darndest thing about hospital stays? They aren’t always marked out in my day-planner! Shoot. Go figure!
    So. There went May. And I have been tossing and turning and being grumpy and angsty about letting you guys down. I went and pulled the tweets from our last #LCCaregiver twitter chat, when we talked about HOPE and how we could spread hope and share hope and how we as caregivers could encourage our loved ones to have ALL THE HOPE. I was in a real funk, guys. I really felt like I had lost the chance to really make Lung Cancer Hope Month “count.”
    Then, it hit me…
    Do you remember what we talked about in that chat? Because I do, and I will NEVER, ever forget it.
    We talked about HOPE, and sources of hope, and we said: this community is our source of hope. This group of souls going through the same thing is our source of hope. We feel hopeful by being there for each other, thick and thin.
    And my angsty funk? My trying to stick to plans? That was all making me feel hopeLESS. I was acting and talking like a person who felt hopeLESS.
    No more. I reject that trap. You are my family, and I am yours. I don’t need deadlines and set schedules to be there for you, and you don’t need that to be there for me! The most relieved I have felt along this entire walk with lung cancer have been the times when I let go of trying to keep to an ironclad schedule, and have instead followed my gut and allowed myself to really be present in the current moment and what the moment needed.
    I want to be present for you, and I know you are present for me. We are all in this together.
    Now, don’t get me wrong: I DO want to catch up and write some posts about ASCO (the major oncology conference that just took place in Chicago); about recent drug approvals; about ways caregivers can find peace. And I will. But I also know I won’t be letting you down.
    Let’s chat!
    TONIGHT (Wednesday) at 8pm ET, let’s chat about the support network you keep around you. Let’s talk about what you need, where you feel most confident and least confident, and what you can do to help your support system help YOU. This is an ongoing conversation, believe me; let’s all grab our tea and put on our slippers and come together to follow #LCCaregiver tonight. Questions are below. I hope to “see” you there! Bring a friend; all are welcome.
    Love always,
    Danielle
    #LCCaregiver Twitter chat, tonight (Wednesday) at 8:00PM ET. Follow #LCCaregiver on Twitter to participate!
    T1: Who do you consider your “support system?”
    T2: What are the strengths in your support system?
    T3: What are the gaps or weaknesses in your support system?
    T4: What has been the hardest thing to ask someone? What kind of help is hard to find?
    T5: Would you rather people ask what you need, or just volunteer specific help?
    T6: What resources or tools would you like to have in your Caregiver Quiver? (sorry, can’t help it, I really love that phrase now)
    (If you’ve never used the LUNGevity Navigator App, just wait: I’ll tell you about it tonight!)
    T7: Are there local resources for caregivers where you live? What local resources would be cool to create?
    T8: What can the nonprofit orgs like LUNGevity do for you? (have you checked out LUNGevity’s awesome caregiver resource center?!)
    T9: What can your fellow caregivers best do to support you from afar?
     

  21. Like
    KatieB got a reaction from Tom Galli for a blog entry, Grief is a Part of Advocacy   
    Advocates are courageous and brave as they raise awareness or work tirelessly to change injustices and create a better world.

    Most people become advocates because they were personally affected by the cause they are fighting for. While they have smiles on their faces and work to inspire...there's a part of their hearts that are always grieving for the love they lost or the life that once was.

    At least thats true for me- even after 15 years.

    While our personal experience fuels us during advocacy events and awareness days we are also acutely aware of the absence of those who were lost to the disease and reminded that a part of our life is forever changed.

    Advocacy is a way to turn a terrible life experience into education, awareness, and support for soneone facing similar challenges.

    Advocacy events and activities can be personally rewarding and advocacy efforts can assist others and even change their lives.

    Being an advocate is amazing and meaningful.
    While I celebrate the progress I've been a part of and the lives I've helped to change, a part of me is alwaying grieving a little bit.

    I've learned that grief is most definitely one emotion that fuels advocacy.

    As long as I advocate for people with lung cancer, I will never stop grieving for my dad. Everything I advocate for reminds me that he's no longer here. Part of me finds comfort that he is still "with" me after all these years while other relatives have long stopped saying his name. While I'm on a mission to provide all these things to improve a patients survivorship, I'm reminded that my dad never had these things and he did not have a fair shot at survival.

    It's really bittersweet. Even though there is a an undercurrent of sadness-- turning tragedy into purpose and a mission honors my dad.

    Its also the most rewarding feeling to serve others and help to change their lives

  22. Like
    KatieB reacted to DanielleP for a blog entry, Caregivers and HOPE!   
    Hello, my friends!
    I HOPE, wherever you are, that you are having a beautiful Spring!
    I HOPE, whatever you are up against, that you are finding support and peace in your endeavors.
    I HOPE, however you need, that you are finding the time to create room for yourself in your busy schedule.
    I HOPE, above all, that you and yours are doing well.
    Thanks to #LUNGevity, May is officially “Lung Cancer HOPE Month.” This particular awareness campaign places a much-needed focus on all there is to be HOPEful about in the #lungcancer world. To that end, we will be talking frequently this month about what HOPE looks like; what it feels like; what it means to you and to your loved ones involved in this lung cancer experience.
    Also: I had the extreme honor of attending LUNGevity’s national HOPE Summit this past weekend. For the first time, the Summit featured a separate day of sessions designed for Caregivers: the “COPE” Summit.
    My suitcase is still in the hall; I am still sore, sleepy, and overwhelmed: in the MOST productive and phenomenal way possible! If you have not yet attended a regional or national HOPE Summit, I could not possibly recommend it more wholeheartedly. The experience is hard to explain, other than saying it is a near-necessity for anyone touched by lung cancer: there is nothing more uplifting than being surrounded by fellow survivors, Caregivers, experts, and researchers who are ALL working through the same difficulties to reach the same goals. The sense of community is intoxicating, and the sense of forward progress in policy and knowledge is inspiring. It is part conference, part congregation, part school, part party, part reunion, part group therapy, and ALL heart.
    Thank-you, LUNGevity!!!
    I had briefly considered writing a novel-length post that would recap all of the Caregiver-specific takeaways from the weekend, but then I realized that that would be unfair: unfair to you, my friend, having to read all of that at once, and unfair to the extent of the material itself. I have plenty of talking points from the conference to share with you, all about HOPE, and since this is HOPE month…you see where I am going with this…
    Stay! Tuned!
    Let’s start conversations! Let’s put our heads together and be honest and be open and reach out. I would be honored to hear from you!
    To kick off this month-long conversation, our regular monthly #LCCaregiver Twitter chat will be tonight (Wednesday, 5/3) at 8pmET. You know the drill: follow the hashtag #LCCaregiver to participate. (I highly recommend using a chatroom service such as tchat.io as well. Just put tchat.io in your address bar, and enter #LCCaregiver when it asks for a hashtag).
    If you are not on Twitter, please join! The lung cancer support community on Twitter is large, active, and incredibly helpful. There is no need to face any of this alone! The message boards and blogs here on LCSC are profoundly comforting, and the Twitter presence of fellow advocates is a meaningful complement.
    For tonight’s chat, we’ll be focusing on breaking down a large question: what is the role of Caregivers in spreading and advocating for HOPE in lung cancer? One major thought I’ve had since the HOPE Summit—one major takeaway I will explain in more depth later—is that HOPE can be complicated. It can be especially complicated when the Caregiver is taking the natural backup role: we are not the patient. What are our boundaries? When should we captain the HOPE ship? When should we yield? Is it a different skill to help our loved ones be HOPEful than it is to help spread HOPE in the wider community?
    Think on that. The specific topics I’ll be asking about tonight are listed below.
    I can’t wait to “see” you tonight! Bring your popcorn and a friend (or two)!
    Love and thanks,
    Danielle
    Topics for #LCCaregiver Twitter Chat 5/3
    What does HOPE look like to you?
    What brings you HOPE?
    What does HOPE look like in the broader cancer community?
    What have you done to bring HOPE to your loved one?
    What can we, as Caregivers, do to bring HOPE to our loved one?
    Is there something that we, as Caregivers, can do to bring HOPE to our loved ones with cancer?
    What specific actions can Caregivers take to support Lung Cancer HOPE Month?
    What actions are appropriate for us to take as Caregivers to promote HOPE?
    What do we do if we have different ideas about #HOPE than our loved ones?

  23. Like
    KatieB reacted to LaurenH for a blog entry, Rose Vining's Story   
    I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family.
    I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake.
    I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it.
    A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help.
    I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life.
    Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest.
    Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador.
    I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!

  24. Like
    KatieB reacted to Tom Galli for a blog entry, Voyage of Hope   
    I am writing this from the pool deck of a cruise ship while on a transatlantic sojourn. Our fourth transatlantic and our favorite form of vacation, we cross then pick several countries and explore. This year, after docking at Barcelona, we fly to Ireland and tour the wild and unpopulated western coast, then spend a long weekend in Edinburgh, and fly home. The cruise and the touring after is wonderful. The flight back is a nightmare because my incision scars throb in pain in a pressurized aircraft. We need to make the return flight in two legs (overnighting in Boston) to recover from the pain. 
    The national hope summit concluded, and missed for the second time because of our annual spring migrations, I tell you about our cruise as two examples of hope.
    First, we undergo treatment and endure discomfort for a reason -- extended life. It is important to shelve the treatment and uncertainty mantle to do something enjoyable with this life extension. We enjoy these long (and reasonably priced) repositioning journeys on a cruise ship.  We step out of the mundane and into the lap of luxury and enjoy interactions with the international assortment of passengers we sail with. 
    Second, to the essence of hope, if I can survive to do this, so can you.  
    I will never go back to my lifestyle before lung cancer. But, I can have an enjoyable and meaningful life after lung cancer. And, my attitude dictates the amount of joy and meaning experienced. It is so important to realize this point. We endure treatments for a reason. Find your reason. Revel in your new normal. 
    Life indeed is what you make it. Make yours. 
    Stay the course. 
    Tom
  25. Like
    KatieB reacted to Tom Galli for a blog entry, Having and Eating Cake   
    I like thinking about choice.  It is an interesting concept and can involve logical, rational thinking and irrational and illogical thought — sometimes concurrently.  Choice is not just a human phenomena.  Animals make choices, some deliberate and some random. But when all is said and done, a choice is a decision that has an outcome (or consequence).  When we make rational choices, we are said to be informed of the consequences. Irrational choices are those where consequences don’t matter.
    To digress for just a moment, consider the age-old saying involving cake.  It is generally cast as a statement of choice that resolves to a consequence: if you eat your cake, you can’t have it. Think about the statement for a moment.  If I truly want to possess a cake, I can’t eat it.  Both are desirable: having a cake is nice, eating it is better.  But, the consequence of eating involves the loss of cake and, for example, a further consequence if one planned to use the cake to celebrate a child’s birthday. Most would characterize eating this presentation cake as irrational. Disappointment is the consequence and it is known and understood before making the choice to eat.  
    Let’s extend our thought experiment to a choice between lung cancer treatment and continued smoking. Surgery, radiation and chemotherapy all irritate the lung, and presume the smoker realizes that tobacco smoke (indeed any smoke) is also a lung irritant.  Choosing smoking under these circumstances is irrational. The known consequences range from healing problems, surgical failure, and premature reoccurrence. Yet these don’t seem matter. The impact of consequences will also disappoint the treatment team and family who are praying and hoping for success.
    There are many choices in lung cancer, all with consequences.  Not choosing treatment because disease is at an advanced stage is rational. Implicit is the forbearance of side effects with little prospect of success but yielding a higher quality of end-time life.  But when one chooses treatment, one is choosing life extension.  Choosing also to continue smoking while undergoing treatment is not rational and puts at risk the opportunity for extended life.  Let’s make rational behavior choices and avoid undesirable and disappointing consequences.  Chose either to have your cake or eat it.
    Stay the course.
  26. Like
    KatieB reacted to Tom Galli for a blog entry, Advocating For Profit   
    I am a capitalist!  I firmly believe profit is a reward for good performance and indeed it is an expected reward.  Nothing is more important in business than making a profit.  Nothing!  My purpose for writing this is to acquaint you with a new type of business on the lung cancer scene — a for profit advocacy company.  That’s right, companies have been formed to advocate for and sustain those in lung cancer treatment and expect to earn a profit -- off us!  Let that sink in for a moment.
    Why a for profit seeking venture for lung cancer? Our disease kills three times more than any other type of cancer.  Research into breast cancer is making the “pink ribbon” disease a declining market.  And, perhaps lung cancer is finally getting a research break with the emergence of targeted therapy and advances in immunotherapy for types of non-small cell lung cancer.  Investment capital necessary to start the profit engine sees a growth opportunity -- from us!
    Let’s get down to business by creating 2 companies: call them Non Profit and For Profit.   Both have a revenue projection of $1,000.  Non Profit gets revenue from donations; For Profit from sales.  For Profit has a 20-percent profit expectation.  Non Profit has none.  Non Profit can spend all of its revenue — $1,000 — advocating for us.  For Profit can only spend $800.  Twenty percent of its revenue must be profit.  From the eye of the lung cancer patient and survivor, which company is more efficient and effective.  If dollars spent advocating and supporting are the measure, clearly Non Profit.
    That is the business case, but there is a more important case at hand.  For profit companies are establishing a business that makes money from our malady, our pain, our side-effects, our recurrences, our suffering.  They are not selling drugs or providing treatment, they are advocating, for profit -- on us!  You might want do a little checking before establishing a relationship with a new guy on the block.  Rest assured, LUNGevity remains a Non Profit. Private message me for details.  Be careful out there!
    Stay the course.
  27. Like
    KatieB reacted to Tom Galli for a blog entry, Few Patients Understand Their Prognosis   
    Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor.
    At first pass, I questioned the validity of the percentages.  They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not.
    My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy.
    After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me.  Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated.
    My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject.
    My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride.
    Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it.
    In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start.
    Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails.
    Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425!
    Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast!
    Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer.
    Stay the course.
  28. Like
    KatieB reacted to DanielleP for a blog entry, Caregiver Conflict? Why? Let's just...not.   
    "Boy, what a week!"
    ...How many of you know that phrase by heart? All of you! (And not always starting with such an innocent word as "boy...")
    Well, that's been my week. And I know it probably has been for you, too.
    Just by way of illustration: I went to the grocery store a week ago. On the day of my mom's most recent treatment. Mom's treatment stays usually last about 6 hours, so the day is toast by the time we get home, and we are "pooped."
    So, back to the groceries.
    I. Just. Now. Finished. Unloading. The. Car.
    Don't get me wrong: I got the precious perishables out as soon as we went inside.
    But the rest? 
    It slept in my car through a week of hot-cold-stormy-sunny. Once we had the front door locked, the outside world vanished.
    This week progressed similarly for the rest of our responsibilities, too: we felt under the weather (literally and figuratively), so the ticks on the tick-off list just didn't get ticked. 
    I am absolutely sure that each of you knows that feeling. That's one of the safety nets of this community: nobody knows what it's like until they've been there. Not really. That's what helps to build our Caregiver community and our LC community. That's our familial bond. 
    But, like most weapons, it can be a sword or a shield. Sometimes, that bond can also be a burned bridge.
    Have you ever been challenged by another Caregiver? Asked to defend why you chose a particular approach for your loved one? Asked why you haven't done this or tried that?
    I have. And I bet you have, too.
    It hurts. 
    Not only does it imply that one approach is better (which is condescending), but such criticism places an additional burden on already overwhelmed shoulders: explain this to me! Justify this to me! Take the time to research my position!
    Even as we build our bonds as Caregivers, and even as we acknowledge the struggle that unites us, we must always remember that every family is different. Every patient has different needs, so every Caregiver must respond to THAT patient, OUR patient, rather than to some "ideal" formula of caregiving.
    Want a live-in aide? Hire one. Don't? Then don't. Same with choosing treatment plans, listening to holistic practitioners, which tasks to assign friends and family, which information to share with whom, how to make the calendar...anything.
    I'm as guilty of this as anyone, but I try to consistently remind myself: we are on the same journey, but along different paths. And that's okay.
    I would be honored if you would join us at our next monthly #LCCaregiver Twitter chat: tomorrow, Wednesday 4/5, at 8pm ET. Just follow #LCCaregiver to participate. Everyone is welcome. Bring a friend. Tell a fellow Caregiver. Have your loved ones chat alongside you.
    I am so excited to share with and learn from you.
    The questions and topics are below, so that you may review them before we "meet" tomorrow night.
    Love and thanks,
    Danielle
    ?
    Did you find support among other caregivers or do/did you find it more challenging? Why? 
    Have you experienced feelings of guilt or judgement placed upon you by other #LCCaregivers?
    What are some of the tensions that can erupt between carers?
    What are the different tensions between #LCCaregivers in families vs in support groups?
    How can a new #LCCaregiver prevent caregiver conflict and competition?
    Are there any tips or resources that can help an #LCCaregiver dealing with competition and judgement?

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