Jump to content

KatieB

Administrators
  • Content Count

    15,057
  • Joined

  • Last visited

  • Days Won

    36

Reputation Activity

  1. Like
    KatieB got a reaction from hope16 for a blog entry, Submitted by Melissa Crouse   
    10 years ago I was diagnosed with NSCLC and was told that with an operation and treatment, I had 3-5 years to live .  
    After an upper left lobe resection followed by systemic chemo I went into remission and enjoyed 2 1/2 years of precious time.  Then, a checkup revealed that I had 17 mets to my liver and a couple of “hot spots” in my lungs. At that time I joined the already very full ranks of stage 4 NSCLC patients.  The day I was to begin another course of chemo, my oncologist recommended that I try a clinical trial, so I did.  
    My attitude then and my attitude now is “What have I got to lose?”. That clinical trial knocked all the cancer away and gave me more time, but the nature of NSCLC is sneaky and persistent.  Things flared up again after about a year and a half and for several years I was put on different cocktails of drugs that gradually were being approved by the FDA. During that time I continued to teach school and I lived a full and productive life.
    There were some significant bumps along the way, but I’m still here. Flashing forward to the present, I am now on my 5th clinical trial which is successfully knocking back my cancer and giving me more time. Participating in clinical trials have kept me going in this chess match.  They have put cancer in check several times and are key to bridging the gap from treatment to treatment.
    I have seen tremendous advances during these 10 years and I feel the cure is just around the corner. I will continue to take advantage of clinical trials because I’m just too busy with life.  
    Also, I want more time.  Time for family and friends.  Time to see grandchildren being born and grow up. I just want time.  
    Clinical trials have made that possible.   

     

  2. Like
    KatieB got a reaction from LouiseB for a blog entry, Trish Strulson   
    My Journey Belongs to Me

    Based on statistics, lung cancer has a five-year survival rate of 17.4%. For many, it’s a death sentence but for me, this meant nothing since I am not a statistic. I came to the realization that, everyone else’s cancer is not my cancer, because my journey belongs to me, my symptoms were different, and the recovery process seems to be a lifelong event.

    My journey began in September of 2013, with the stigma that somehow I brought this on myself, that it was self-inflicted, or maybe I deserved it. I was told no two cancers were alike, and this cancer would belong to me, for as long as I fought. So there was no need to do Internet searches, book readings, or viewing statistics, because this would only make me feel as though, I was given a death sentence. And those who told me that, were absolutely correct. However, I did Internet searches, book readings and viewed statistics, only to discover that over one-half of people diagnosed with lung cancer die within the first year of being diagnosed. I found out, every 2 ½ minutes, someone else is diagnosed, and every 3 minutes; someone dies of lung cancer. I didn’t even know I had cancer at this time, but the grave digging had already begun.

    Due to the information I had gathered over the Internet, I found my symptoms, were quite different from others. I had gone to the emergency room due to a stomach ache, which continually worsened over the next week, and I just couldn’t tolerate the pain any longer. The ER physician decided he wanted to do a CT scan of my abdominal region. An hour later, he returned with not many concerns for the pain I was experiencing, but instead with the nodules he found in my left lung. This was the only thing I heard, because I could only see his lips moving, but couldn’t hear his words. The only real memory of that day, was the machines beeping and the orange drink before the scan being nasty. He referred me to be seen by a pulmonary doctor, immediately.

    My pulmonary doctor wanted to do a PET scan; the nodules lit up my cancer like the 4th of July. On November 15th, immediately following the results, I was whisked away, thinking the nodules will come out, and all will be right with my world. I woke up unable to move, and my daughter standing over my bed crying; she would be the one to deliver the news; I had lung cancer and they had removed my left lower lobe. My only memory, of my actions following this news, was smiling, and turning my head away, to cry myself back to sleep. I was discharged from the hospital four days later to start my chemo therapy, and my recovery process. My doctors wanted to go after this cancer very aggressively, and prescribe me to endure chemotherapy, using 2 of the harshest medicines available, Cisplatin/Alimta. I was a very lucky woman not to experience a lot of the effects from chemotherapy that others had endured. Everything was injected through a power port, located in my chest; the taste of the medicine was like chewing on a metal can. My doctors believe my good health and attitude prior to the diagnosis, had prepared me for this journey I was going through, and it’s what got me through it.

    My recovery process seems to be a lifelong event, and every day, I am faced with what seems to be a new obstacle. Lyrics to a John Lennon song say it best: “One thing you can’t hide is when you’re crippled inside.” Over the course of the last two years, I have tried to stay positive. I have made jokes about myself, and this disease, because this is how I have been able to deal with this tough situation. I have cried, and screamed, going through every emotion possible, and just now; I am starting to recognize, that person who looks back at me in the mirror. My brain operates a little differently; my heart has hardened; my ears don’t hear as well; and at times; I have an overwhelming feeling of sadness, but yes, it appears every piece of my body has been affected by this damn disease. I know I will find my way, and I will survive, but for some reason, at times, I tend to be struggling really hard just to get started. The cancer not only has affected me, but it has also affected those around me. I have family members, whom I barely have a relationship with; due to the fact, I never heard from them through this whole process. Resentment is a really hard pill to swallow, but I just can’t seem to let that one go. My marriage of 22 years came to an end; we were more strangers, than we were partners. Instead of this disease bringing us together, it drove us farther apart. I even lost my job of six years, two days after I got my first clean scan. The lung cancer roller coaster sucks...everyone says to take one day at a time, but really? I don’t want to take one day at a time; that’s not how I live my life.

    My journey has taken me to places; I couldn’t even imagine. I will forever bear the scars, and experience some symptoms, but the recovery process will be mine, for a lifetime. As far as I can see, their cancer has been nothing like my cancer. It didn’t cost me my life, my hair, or I didn’t even lose weight. Through the entire journey, I was constantly told, “You don’t even look sick.” One of the greatest side effects I experienced was the ability me to look at my life, take charge, and make changes to it on my terms. It’s all about being in a happy productive place, so I have removed individuals from my life, and added some new ones, doing things I had never done before. I have gone back to school, something I have wanted to do for years, but never believed in me enough, to do it. I believe everything happens for a reason, and I as much as cancer sucks, it made me take a look at my life, take control, and start living again. For that, I will be forever grateful.
    I have been though a lot over the course of the past 2 years, but to be where I am and who I am today…..I would do it all again.

  3. Like
    KatieB got a reaction from PaulaC for a blog entry, Depression in Lung Cancer Patients   
    It’s normal for someone diagnosed with cancer to experience feelings of sadness, fear, anger and grief.  It’s when those feelings prevent you from functioning in your everyday life and you feel emotionally paralyzed in your situation for an extended period of time that you need to seek help.
    Cancer patients experience depression two times more than the general population and studies have shown that mental health and social well-being can affect the success of treatment.  Those diagnosed with cancer have life plans that are interrupted, a change in physical activity and ability, role changes in relationships, and career, may experience a loss of self-image or sense of self.  They also experience fears about the cancer growing within their bodies, anxiety about the success or failure of treatments, worry over their families and caregivers and may fixate on the possibility that their lives will be cut short from their disease.
    Those diagnosed with lung cancer have an additional set of issues facing them.  Some may experience the stigma associated with the disease and experience anger or guilt, isolation or shame depending on whether or not they had a smoking history and whether or not they feel they are getting adequate medical and emotional support from their local communities.
    Lung cancer survivors may also feel outrage, anger and a sense of being forgotten because of lack of public awareness and support of the disease in the media, limited treatment options available for the disease and sparse funding that goes to research the disease.
    Depression is more than just the normal feelings of sadness. Depression is when an individual experiences at least one of the following symptoms for more than two weeks:
    Feeling sad most of the time Loss of pleasure and interest in activities you used to enjoy Changes in eating and sleeping habits Nervousness Slow physical and mental responses Unexplained tiredness Feeling worthless Feeling guilt for no reason Decreased concentration ability Thoughts of death or suicide Getting help for your depression can help your cancer experience feel less challenging; it may help your relationships with the people around you may give you back some sense of control over certain parts of your life.
    Visit the National Cancer Institute for more information on depression in cancer patients and call your doctor if you feel like you may be suffering from depression.

    ______________________

    Did you experience depression with your lung cancer diagnosis?
    Share your tips on how you dealt with your depression by commenting below.
  4. Like
    KatieB reacted to Tom Galli for a blog entry, Christmas Reflections   
    I've seen the star of Bethlehem, very early on Christmas morning.  While peacekeeping in Egypt's Sinai Desert, I would run before daybreak as soldiers are prone to do. Although the desert is quite cold in December, dawn running was a habit hard to break.  I ran the camp perimeter to check the defensive positions and greet soldiers enjoying the banter in three different languages.  Starting in the south perimeter and running counterclockwise, the predawn western sky was dark except for the stars that were so clear, they were painted on the black night sky. Passing along the northern perimeter, the sky lightened and my expectation was the sun starting its rise.  But, no, not that day. Right on the distant horizon was a cosmic anomaly, a false dawn, but a bright shining nevertheless.  I was looking at the star in the east seen by the Three Wise Men as they rode in search of Jesus. I would later learn, it was not a star but a rare conjunction of the planets -- Jupiter, Saturn and Mars -- all rising in the east slightly before being washed out by the rising sun.  I am awestruck by that memory.
    Many years later after surviving a years worth of cancer surgery and while waiting the results of my first post-surgical diagnostic scan, my entire family gathered to celebrate Christmas. Mom, dad, four brothers, daughter, and a posse of nieces who overwhelmed my one nephew comprised the gathering.  Despite my manifest uncertainty, we had a joyous time.  I can count on a single hand the times my family gathered.  With two Galli soldiers, someone was always missing on deployment.  But Christmas in 2004 was an assembly formation, and the clan was all present and accounted for.  We celebrated Christmas and my life.  I am awestruck by that memory.
    Then started the clammer of lung cancer treatment. In my treatment years after the Christmas 2004 assembly, my life hovered in sadness and despair. I allowed myself to become overwhelmed by uncertainty, indeed I could think of little else. I forget there are only two things certain in the human experience: birth and death.  Everything else is uncertain; outcomes are unpredictable. Treatment was working for I was granted extra life.  There were many opportunities for joy but they were frittered away.  I am awestruck by those memories.
    In common with all lung cancer survivors, having been born, I have only one certain human experience yet to deal with -- death.  Its timing is uncertain with or without lung cancer. In my memories of active treatment, I chose to let life pass me by forever losing opportunities for joy.
    Today we celebrate a birth, a new beginning.  It was announced by a star. I've seen the star.  Let the joy of this birth be a new beginning for all lung cancer survivors.  Let us live and find joy in the life we have and be awestruck by the memories of life well lived.
    Stay the course. 
  5. Like
    KatieB reacted to Tom Galli for a blog entry, Thirteen Years; Thirteen Toes!   
    Today we celebrate 13 years of surviving NSCLC.  I'm borrowing three toes from Martha, my wife and caregiver extraordinaire, who deserves most of the credit for my continued life.  Martha did the heavy lifting during treatment, asking the right questions at the right time, and prodding my medical team with just the right touch.  By comparison, I was at wit's end during my nearly 4 years of continuous treatment.  Doctors McK (GP), H (Oncologist) and C (Thoracic Surgeon) also deserve a lion's share of credit.  Collectively, they share a trait that distinguishes them from the rest of medical community -- they treat people, not patients.
    The red toenail painting tradition was started by a Dr. Phillip Berman, radiologist and never smoker, who was diagnosed with Stage IV NSCLC.  In an early Internet cancer website he founded, RedToeNail.org, he vowed to paint a toenail red for each year he survived what he called "this nastiness."  He painted 5 before passing but taught me a great deal about living with lung cancer.  During treatment, he was playing with his children, exercising, interacting with friends, and finding something to enjoy every day.  In other words, he embraced the life he had and lived every day reveling in the joy he discovered. His lesson -- those who choose treatment choose life and the important thing is to do something with the life you have.  I pass his powerfully evocative message to you.  If you suffer with lung cancer then resolve to live every day and find something to enjoy.  Realize that if I can live, so can you.  Paint your toenails red!
    Stay the course.
    Tom 
  6. Like
    KatieB reacted to LaurenH for a blog entry, Alisa Brenes' Story   
    Hello there …. my name is Alisa Brenes and I am a 16-year Stage 3 lung cancer survivor.
    I guess you can say my lung cancer journey started before I was born.  My mom, my maternal grandfather and many of his siblings all died of lung cancer.  I am motivated to do my part to end our family history now.
    I have been a lung cancer advocate for over ten years, most of my work behind the scenes, but little by little I’m coming out and sharing my story.  I hope to follow this introduction with more blogs, sharing hope and spreading awareness.
    I was diagnosed in July of 2000, just a few months after my mom passed away from lung cancer.  It still boggles my mind that I was taking care of my mother while the same cancer was growing inside my lung.  I had a third of my lung removed and followed up with chemotherapy.
    I am a single mother of twin boys who were 10 years old at the time.  They were in fourth grade and I didn’t even know if I would be there for their elementary school graduation.  Thanks to God and my amazing doctors, I lived to see my twins graduate from college.  My next goal is to see them happily employed
    I was diagnosed before social media and message boards were around,  the world wide web was fairly new and there wasn’t even google yet.  I felt lost and had never met another lung cancer survivor.  Within a few months the internet started becoming more popular and all that changed.  Somehow (thank you Universe!) I found Katie Brown’s original message board and through that I not only connected with other Survivors, but I was introduced to the first Walk for a Cure (now called Breathe Deep NYC) and have been volunteering ever since.  And if that wasn’t enough to keep me hopeful and connected (and it was …) I was introduced by Katie and LUNGevity to Hope Summit!  If anyone wants to know what it is like to be in a room with hundreds of survivors (but no one ever gets lost in the crowd, somehow we end up like one big family) just come to Hope Summit.  The energy is amazing and you leave the Summit with life-changing knowledge, friendships and Hope.
    This is not a journey I chose or one that I would wish on others, but the truth is I've grown so much through this and have such an appreciation of every day and the friends I now call family that I've met through lung cancer have enriched my life beyond words!  As strange as it might sound to some, I can actually say that my cancer diagnosis brought me many blessings.
    It is my desire to share hope and friendship with other survivors and help spread awareness so one day we will live in a world where no one dies of lung cancer.

  7. Like
    KatieB reacted to DanielleP for a blog entry, Thoughts on Caregivers, Connections, and Setting (Helpful) New Year’s Resolutions!   
    Welcome! Settle in. Get comfortable.
    If you’ve joined us here, lung cancer has touched the life of someone you love, and has thereby touched your life as well. I am sorry.
    Well: I am sorry you are going through this, for sure, but: I am so glad you have found us here. Excited, even. You have found a new family, and a new wealth of resources. You will not be alone in this (insert your preferred word: some say “fight,” some say “journey,” I say “process”)! 
    A few words about me, so you know who you’re “talking” to: I’m 29, and I’m a full-time caregiver for my parents. My awesome mama was diagnosed with Stage IV NSCLC in March of 2015, and has been on an immunotherapy (PD-L1) clinical trial ever since. My awesome papa has other serious health issues, so we all hang out together, as a team, three stooges making the most fun we can (we’re good at that) and doing our best to keep the to-do lists at bay.
    Ahhh, those to-do lists…
    Ahem. I’m sorry. That’s a topic for another day!
    I’m a Social Media Ambassador for LUNGevity (more info here), and a volunteer for other projects of LUNGevity and for various other lung cancer organizations. I am a full-time advocate for better lung cancer care, research, and treatment. You can find me on Twitter @Actorielle, and on Facebook at Facebook.com/Actorielle or at danielleremkuspardue.com.
    Most importantly: I’m invested in YOU, in US, and in what it means to be a “Caregiver.”
    I have no particularly special training, and no specialized skill set for the tasks and responsibilities of “caregiving.” Here’s the secret: none of us do. We all learn by doing. We learn as we are called upon to fulfill needs. Bridging gaps between an uncompleted chore, an unshopped grocery trip, and an unresearched new treatment. We all tend to launch (or, rather, be launched) into this lung cancer world, with differing levels of healthcare experience, and all grasping for every bit of credible information we can find. Every bit of comfort, reassurance, honesty, and…help.
    That’s just it. We all begin this process needing all the help we can get. Your loved one, your patient, has his or her medical team, and has you. You, in turn, can have us. This. LUNGevity’s resources for Caregivers (start here) are vast, and practical, and vetted. You can find everything from peer-to-peer mentoring, to message boards, to an individualized app that organizes your specific lung cancer experience. However: amongst all these tools, where does that leave you, the person of the Caregiver? Where can you feel…Connected?
    Here.  In addition to your family and friends and extended support network, join us here!
    LUNGevity is greeting 2017 by undertaking several exciting new endeavors, including this one: a new initiative to blog and chat specifically for the Caregiver audience. It’s almost like a New Year’s Resolution!
    As we explore this New Year’s Resolution together, you and I and LUNGevity, we will consider a different topic every month. I will introduce the topic here, on the blog, for your perusal. The following week, LUNGevity and I will host a chat over on Twitter, so that everyone (you, me, your family, your support network, and our entire community of fellow Caregivers) can come together to discuss, vent, learn, and grow.    
    After each chat, I’ll review our conversations and post a de-briefing blog post. Where are we? What do we know now that we didn’t before? What do we need? Where can we go from here?
    So: it is my great honor to invite you to our inaugural #LCCaregiver Twitter chat of 2017, to be held next week, on Wednesday, February 1st at 8pm EST: “New Year’s Resolutions for Caregivers.”
    What do YOU want to say? What are YOU working on in your relationship with yourself as a Caregiver, and in your relationship with your loved one? If you have been a Caregiver for a while, what would you like to improve or change? If you are new to this role, what do you need in order to feel comfortable?
    As for me, I’m still working on what that title entails. I think we all are. In fact, that one word means something different for every survivor, every family, every household, every situation. “Caregiver.” Care partner, carer, caretaker?
    For me: daughter, friend, and advocate.
    Join me as we walk this road together.
    I am so excited to learn from you.
    Love and thanks,
    Danielle

  8. Like
    KatieB got a reaction from shari for a blog entry, Submitted by Jan Gibson   
    My cousin Kathi, who was more like a sister to me, died of lung cancer in December 2003.  She was 46 years old.   At the time, I didn’t know the first thing about lung cancer.  Since Kathi smoked for years, I thought that’s why she got lung cancer.   I didn’t think too much more about lung cancer for the next year, although I thought about Kathi every day.
    Then, about a year later, I had a sharp pain in the right side of my chest, like a knife stabbing through my chest and back.  I thought that I might be having a heart attack.   I exercised regularly, ate fairly well, and was always concerned about heart disease because my dad had died of a heart attack at age 40 and 3 of my grandparents had died of heart disease.  So I knew it ran in my family.  My husband took me to the emergency room and after lots and lots of tests, it was determined that my heart was fine, but they found this tiny little mass on my left lung.  I was told by my family doctor that it was very possibly lung cancer.   But my pain was on the right side…. The tumor was on my left lung.   This didn’t make any sense! 
    They never did find out what that pain was.   It definitely wasn’t the cancer.  All I can say is that somebody was trying to tell me something.   If I had not gone to the emergency room that day, my cancer would most likely not have been diagnosed until it was too late, like Kathi.  After a pet scan, I was sent to University of Maryland in Baltimore to see a lung cancer specialist.  They immediately did a lung biopsy which confirmed their suspicion.  It was non small cell lung cancer.    How could I have lung cancer?  I was only 46, I didn’t smoke, I exercised 5 to 6 times a week, I had regular check ups, I ate well….how could I have lung cancer?  I immediately got on the internet and began researching lung cancer.  What I saw was very disturbing, to say the least.   The only statistic that I could remember from that evening was that 95% of lung cancer patients do not survive more than 5 years!    I was just devastated. 
    I wouldn’t be able to see my daughters grow up, I wouldn’t be able to see my grandchildren.  Now how was I going to tell my daughters?  They had just watched my cousin die of lung cancer!  I told my younger daughter first, she was 11 years old at the time.  As I looked at her, a fierce feeling of determination came over me.   I WILL fight this, and I WILL beat this!   I have to.  My kids need me and I need them!  I explained to her that mine was a different type of lung cancer than Kathi had and that it was found very early, unlike Kathi’s.  I was trying to downplay it as much as I could to prevent her from worrying.  And it worked.  Several months later  I was sitting at my desk at home, and she saw a Lung Cancer book on my desk.  She came over, picked up the book, read the title and said “Oh Mom, you didn’t even have it that bad!”.   My older daughter was away at college at the time, so I called her and asked her to meet me for lunch.  She was 20 years old.   I explained it to her just like I did to my younger daughter.   They both seemed to take it very well.    
    I was then sent for more tests and finally some good news!  The cancer had not spread to my lymph nodes.  It looked to be contained in one of the two lobes of my left lung.  This meant that I was a candidate for surgery, which meant the best chance of a cure!  I was diagnosed at Stage 1A.  So, on April 20, 2005  I had the upper left lobe of my lung removed at the University of Maryland Medical Center.   I was able to have VATS surgery, Video Assisted Thoracic Surgery.  The day I came home from the hospital, I tried to walk up the stairs at my house.   About half way up, I stopped and couldn’t breathe.  I had to sit on the step for about 5 minutes to catch my breath.  It was then that I realized that life would probably never be “normal” again.  But, I was on the treadmill walking two weeks after surgery and back in spinning classes 4 weeks after surgery.   I was determined to get back on that spinning bike and continue like I still had two lungs! 
    The first question people ask me when I tell them that I am a lung cancer survivor is “DID YOU SMOKE?”  I think non-smokers ask because they hope I’ll say yes, so they can feel safe.  But none of us is “safe”.  What’s so awful about that question is that if you are a smoker, you probably feel horrible about it.  Almost everyone who smokes wants to quit – the majority of the people started when they were young and got addicted.   Anyone who is diagnosed with cancer will ask themselves, “Why Me” and try to figure it out.  The thought that you may have brought it on yourself is devastating.    Do they deserve the disease because they smoked?  NO!  No one deserves this horrible disease! Today LC needs to be on the radar screen for everyone, not just people who smoke.   I hope in the years to come LC will get the recognition of other cancers, and a cure will be found.
    I tried to return to my life before cancer, but found it was impossible.  My whole world had been shaken and I realized that I would never return to the life I had led before.  I was a survivor and I was determined to help other people diagnosed with lung cancer.
    The best thing that I found on the internet while researching lung cancer, was the Lung Cancer Support Community.  It was an on-line community of over 7000 members who had been affected by lung cancer.  Some were survivors, some were caregivers, but they were the most caring bunch of people I have ever known, and I certainly needed that.   Although I will have to get a CT scan and visit my doctor in Baltimore every year for the rest of my life, it is a small price to pay for saving my life.
     By far, my biggest challenge has been conquering the fear of recurrence.   Some days are almost worry free, others are not.  The fear is always there.  But I’m proud to say that I am now 10 years cancer free!  After 5 years the doctors call you “cured”.  What a nice word.  I may be cured, but I am still a member of the cancer community and always will be.  I will continue to advocate for lung cancer research until we have a reliable early detection method and adequate funding for research so that everyone else can be as lucky as I am!
  9. Like
    KatieB got a reaction from shari for a blog entry, Trish Strulson   
    My Journey Belongs to Me

    Based on statistics, lung cancer has a five-year survival rate of 17.4%. For many, it’s a death sentence but for me, this meant nothing since I am not a statistic. I came to the realization that, everyone else’s cancer is not my cancer, because my journey belongs to me, my symptoms were different, and the recovery process seems to be a lifelong event.

    My journey began in September of 2013, with the stigma that somehow I brought this on myself, that it was self-inflicted, or maybe I deserved it. I was told no two cancers were alike, and this cancer would belong to me, for as long as I fought. So there was no need to do Internet searches, book readings, or viewing statistics, because this would only make me feel as though, I was given a death sentence. And those who told me that, were absolutely correct. However, I did Internet searches, book readings and viewed statistics, only to discover that over one-half of people diagnosed with lung cancer die within the first year of being diagnosed. I found out, every 2 ½ minutes, someone else is diagnosed, and every 3 minutes; someone dies of lung cancer. I didn’t even know I had cancer at this time, but the grave digging had already begun.

    Due to the information I had gathered over the Internet, I found my symptoms, were quite different from others. I had gone to the emergency room due to a stomach ache, which continually worsened over the next week, and I just couldn’t tolerate the pain any longer. The ER physician decided he wanted to do a CT scan of my abdominal region. An hour later, he returned with not many concerns for the pain I was experiencing, but instead with the nodules he found in my left lung. This was the only thing I heard, because I could only see his lips moving, but couldn’t hear his words. The only real memory of that day, was the machines beeping and the orange drink before the scan being nasty. He referred me to be seen by a pulmonary doctor, immediately.

    My pulmonary doctor wanted to do a PET scan; the nodules lit up my cancer like the 4th of July. On November 15th, immediately following the results, I was whisked away, thinking the nodules will come out, and all will be right with my world. I woke up unable to move, and my daughter standing over my bed crying; she would be the one to deliver the news; I had lung cancer and they had removed my left lower lobe. My only memory, of my actions following this news, was smiling, and turning my head away, to cry myself back to sleep. I was discharged from the hospital four days later to start my chemo therapy, and my recovery process. My doctors wanted to go after this cancer very aggressively, and prescribe me to endure chemotherapy, using 2 of the harshest medicines available, Cisplatin/Alimta. I was a very lucky woman not to experience a lot of the effects from chemotherapy that others had endured. Everything was injected through a power port, located in my chest; the taste of the medicine was like chewing on a metal can. My doctors believe my good health and attitude prior to the diagnosis, had prepared me for this journey I was going through, and it’s what got me through it.

    My recovery process seems to be a lifelong event, and every day, I am faced with what seems to be a new obstacle. Lyrics to a John Lennon song say it best: “One thing you can’t hide is when you’re crippled inside.” Over the course of the last two years, I have tried to stay positive. I have made jokes about myself, and this disease, because this is how I have been able to deal with this tough situation. I have cried, and screamed, going through every emotion possible, and just now; I am starting to recognize, that person who looks back at me in the mirror. My brain operates a little differently; my heart has hardened; my ears don’t hear as well; and at times; I have an overwhelming feeling of sadness, but yes, it appears every piece of my body has been affected by this damn disease. I know I will find my way, and I will survive, but for some reason, at times, I tend to be struggling really hard just to get started. The cancer not only has affected me, but it has also affected those around me. I have family members, whom I barely have a relationship with; due to the fact, I never heard from them through this whole process. Resentment is a really hard pill to swallow, but I just can’t seem to let that one go. My marriage of 22 years came to an end; we were more strangers, than we were partners. Instead of this disease bringing us together, it drove us farther apart. I even lost my job of six years, two days after I got my first clean scan. The lung cancer roller coaster sucks...everyone says to take one day at a time, but really? I don’t want to take one day at a time; that’s not how I live my life.

    My journey has taken me to places; I couldn’t even imagine. I will forever bear the scars, and experience some symptoms, but the recovery process will be mine, for a lifetime. As far as I can see, their cancer has been nothing like my cancer. It didn’t cost me my life, my hair, or I didn’t even lose weight. Through the entire journey, I was constantly told, “You don’t even look sick.” One of the greatest side effects I experienced was the ability me to look at my life, take charge, and make changes to it on my terms. It’s all about being in a happy productive place, so I have removed individuals from my life, and added some new ones, doing things I had never done before. I have gone back to school, something I have wanted to do for years, but never believed in me enough, to do it. I believe everything happens for a reason, and I as much as cancer sucks, it made me take a look at my life, take control, and start living again. For that, I will be forever grateful.
    I have been though a lot over the course of the past 2 years, but to be where I am and who I am today…..I would do it all again.

  10. Like
    KatieB got a reaction from Michele for a blog entry, Trish Strulson   
    My Journey Belongs to Me

    Based on statistics, lung cancer has a five-year survival rate of 17.4%. For many, it’s a death sentence but for me, this meant nothing since I am not a statistic. I came to the realization that, everyone else’s cancer is not my cancer, because my journey belongs to me, my symptoms were different, and the recovery process seems to be a lifelong event.

    My journey began in September of 2013, with the stigma that somehow I brought this on myself, that it was self-inflicted, or maybe I deserved it. I was told no two cancers were alike, and this cancer would belong to me, for as long as I fought. So there was no need to do Internet searches, book readings, or viewing statistics, because this would only make me feel as though, I was given a death sentence. And those who told me that, were absolutely correct. However, I did Internet searches, book readings and viewed statistics, only to discover that over one-half of people diagnosed with lung cancer die within the first year of being diagnosed. I found out, every 2 ½ minutes, someone else is diagnosed, and every 3 minutes; someone dies of lung cancer. I didn’t even know I had cancer at this time, but the grave digging had already begun.

    Due to the information I had gathered over the Internet, I found my symptoms, were quite different from others. I had gone to the emergency room due to a stomach ache, which continually worsened over the next week, and I just couldn’t tolerate the pain any longer. The ER physician decided he wanted to do a CT scan of my abdominal region. An hour later, he returned with not many concerns for the pain I was experiencing, but instead with the nodules he found in my left lung. This was the only thing I heard, because I could only see his lips moving, but couldn’t hear his words. The only real memory of that day, was the machines beeping and the orange drink before the scan being nasty. He referred me to be seen by a pulmonary doctor, immediately.

    My pulmonary doctor wanted to do a PET scan; the nodules lit up my cancer like the 4th of July. On November 15th, immediately following the results, I was whisked away, thinking the nodules will come out, and all will be right with my world. I woke up unable to move, and my daughter standing over my bed crying; she would be the one to deliver the news; I had lung cancer and they had removed my left lower lobe. My only memory, of my actions following this news, was smiling, and turning my head away, to cry myself back to sleep. I was discharged from the hospital four days later to start my chemo therapy, and my recovery process. My doctors wanted to go after this cancer very aggressively, and prescribe me to endure chemotherapy, using 2 of the harshest medicines available, Cisplatin/Alimta. I was a very lucky woman not to experience a lot of the effects from chemotherapy that others had endured. Everything was injected through a power port, located in my chest; the taste of the medicine was like chewing on a metal can. My doctors believe my good health and attitude prior to the diagnosis, had prepared me for this journey I was going through, and it’s what got me through it.

    My recovery process seems to be a lifelong event, and every day, I am faced with what seems to be a new obstacle. Lyrics to a John Lennon song say it best: “One thing you can’t hide is when you’re crippled inside.” Over the course of the last two years, I have tried to stay positive. I have made jokes about myself, and this disease, because this is how I have been able to deal with this tough situation. I have cried, and screamed, going through every emotion possible, and just now; I am starting to recognize, that person who looks back at me in the mirror. My brain operates a little differently; my heart has hardened; my ears don’t hear as well; and at times; I have an overwhelming feeling of sadness, but yes, it appears every piece of my body has been affected by this damn disease. I know I will find my way, and I will survive, but for some reason, at times, I tend to be struggling really hard just to get started. The cancer not only has affected me, but it has also affected those around me. I have family members, whom I barely have a relationship with; due to the fact, I never heard from them through this whole process. Resentment is a really hard pill to swallow, but I just can’t seem to let that one go. My marriage of 22 years came to an end; we were more strangers, than we were partners. Instead of this disease bringing us together, it drove us farther apart. I even lost my job of six years, two days after I got my first clean scan. The lung cancer roller coaster sucks...everyone says to take one day at a time, but really? I don’t want to take one day at a time; that’s not how I live my life.

    My journey has taken me to places; I couldn’t even imagine. I will forever bear the scars, and experience some symptoms, but the recovery process will be mine, for a lifetime. As far as I can see, their cancer has been nothing like my cancer. It didn’t cost me my life, my hair, or I didn’t even lose weight. Through the entire journey, I was constantly told, “You don’t even look sick.” One of the greatest side effects I experienced was the ability me to look at my life, take charge, and make changes to it on my terms. It’s all about being in a happy productive place, so I have removed individuals from my life, and added some new ones, doing things I had never done before. I have gone back to school, something I have wanted to do for years, but never believed in me enough, to do it. I believe everything happens for a reason, and I as much as cancer sucks, it made me take a look at my life, take control, and start living again. For that, I will be forever grateful.
    I have been though a lot over the course of the past 2 years, but to be where I am and who I am today…..I would do it all again.

  11. Like
    KatieB reacted to Tom Galli for a blog entry, Grandfather and Survivor   
    Meet Charlett Emilyrose Wilson, my first grandchild.  Her parents, daughter Melissa and son-in-law Bill, are overjoyed.  I am ecstatic!  Proud would be a vast understatement!
    Charlett was born 12-years, 8-months, and 13-days after my diagnosis with NSCLC.  I celebrate this joyful milestone in my life for but one reason.  If I can live, so can you.
    Stay the course.
  12. Like
    KatieB reacted to Tom Galli for a blog entry, A Political Test for Physicians?   
    I’m reading of a Yale University study that advocates we choose primary care physicians by testing their political views. It is political open season and medical reporters want to join in the feeding frenzy.  The danger is some will believe a political test (views on motorcycle helmets, pot smoking and firearms to name a few) is necessary physician competency criteria, especially since the test is aimed at our closest and most important connection to the medical system—the general practitioner.
    Although medical specialists (surgery and oncology) treat our lung cancer, we often develop illness unrelated to cancer, or just as likely, a side-effect runs wild.  So a general practitioner (GP) is a very important part of our treatment team.  Presuming you just realized you need one, what are factors a lung cancer survivor should consider in selecting a GP?  Here is my list.
    A Good Listener.  Does your GP listen?  This trait is essential for we have a serious ailment with complex symptoms. During chemotherapy, I didn’t have one symptomatic complaint, I had many and they overlapped and changed day-to-day. A listening GP will hear you out, then asks clarifying questions about symptoms before launching into an exam or grabbing the prescription tablet. Off The Clock.  Does your session seem rushed? Some I know complain their doctor is “on the clock” like a game show contestant during consultation.  That’s not good.  Part of the consultation should be reviewing the reports of specialists involved in your cancer treatment.  And, questions should arise after reports and test results are digested.  A proper review with understanding takes time, not a beat the clock contest. Renew Specialist Prescribed Medications.  Murphy’s Law of medicine is your nausea medication runs out just when your oncologist is booked solid.  Do you have a GP that will come to the prescription rescue?  Some doctors don’t want to intrude on practice privileges of other doctors.  That may be a fine philosophy but when you are suffering and a simple renewal script solves the problem, your GP ought to write the script.  This is a good question to ask when interviewing a prospective GP. Cancer Aware.  In lung cancer treatment, there are medical treatment effects—say radiation burns; medical side effects—nausea, pain, numbness; and related medical problems—depression, chest infections and even common colds.  Your GP should understand the complexity that a simple chest cold might mean to a lung cancer survivor.  Questions and observations to ferret out depression is an important diagnostic role and treatment or referral are essential.  Known and Respected.  My GP was the quarterback of my treatment team.  He selected the players (specialists), monitored their treatment, and intervened to steer the team to a solution that saved my life.  Your GP needs to know practitioners and be able to influence their actions when medical timidity breaks out.  That speaks to a seasoned professional well known in the local medical community. Politics and medicine should be like oil and water—never to mix.  Medical doctors have a higher calling and abide by the Hippocratic Oath.  They swear to share medical knowledge, act always to benefit the sick, and to treat those ill warmly with sympathy and understanding.  In stark contrast, I can name quite a few politicians who forgot taking an oath of office the instant after administration.
  13. Like
    KatieB got a reaction from Gengal for a blog entry, Submitted by Jan Gibson   
    My cousin Kathi, who was more like a sister to me, died of lung cancer in December 2003.  She was 46 years old.   At the time, I didn’t know the first thing about lung cancer.  Since Kathi smoked for years, I thought that’s why she got lung cancer.   I didn’t think too much more about lung cancer for the next year, although I thought about Kathi every day.
    Then, about a year later, I had a sharp pain in the right side of my chest, like a knife stabbing through my chest and back.  I thought that I might be having a heart attack.   I exercised regularly, ate fairly well, and was always concerned about heart disease because my dad had died of a heart attack at age 40 and 3 of my grandparents had died of heart disease.  So I knew it ran in my family.  My husband took me to the emergency room and after lots and lots of tests, it was determined that my heart was fine, but they found this tiny little mass on my left lung.  I was told by my family doctor that it was very possibly lung cancer.   But my pain was on the right side…. The tumor was on my left lung.   This didn’t make any sense! 
    They never did find out what that pain was.   It definitely wasn’t the cancer.  All I can say is that somebody was trying to tell me something.   If I had not gone to the emergency room that day, my cancer would most likely not have been diagnosed until it was too late, like Kathi.  After a pet scan, I was sent to University of Maryland in Baltimore to see a lung cancer specialist.  They immediately did a lung biopsy which confirmed their suspicion.  It was non small cell lung cancer.    How could I have lung cancer?  I was only 46, I didn’t smoke, I exercised 5 to 6 times a week, I had regular check ups, I ate well….how could I have lung cancer?  I immediately got on the internet and began researching lung cancer.  What I saw was very disturbing, to say the least.   The only statistic that I could remember from that evening was that 95% of lung cancer patients do not survive more than 5 years!    I was just devastated. 
    I wouldn’t be able to see my daughters grow up, I wouldn’t be able to see my grandchildren.  Now how was I going to tell my daughters?  They had just watched my cousin die of lung cancer!  I told my younger daughter first, she was 11 years old at the time.  As I looked at her, a fierce feeling of determination came over me.   I WILL fight this, and I WILL beat this!   I have to.  My kids need me and I need them!  I explained to her that mine was a different type of lung cancer than Kathi had and that it was found very early, unlike Kathi’s.  I was trying to downplay it as much as I could to prevent her from worrying.  And it worked.  Several months later  I was sitting at my desk at home, and she saw a Lung Cancer book on my desk.  She came over, picked up the book, read the title and said “Oh Mom, you didn’t even have it that bad!”.   My older daughter was away at college at the time, so I called her and asked her to meet me for lunch.  She was 20 years old.   I explained it to her just like I did to my younger daughter.   They both seemed to take it very well.    
    I was then sent for more tests and finally some good news!  The cancer had not spread to my lymph nodes.  It looked to be contained in one of the two lobes of my left lung.  This meant that I was a candidate for surgery, which meant the best chance of a cure!  I was diagnosed at Stage 1A.  So, on April 20, 2005  I had the upper left lobe of my lung removed at the University of Maryland Medical Center.   I was able to have VATS surgery, Video Assisted Thoracic Surgery.  The day I came home from the hospital, I tried to walk up the stairs at my house.   About half way up, I stopped and couldn’t breathe.  I had to sit on the step for about 5 minutes to catch my breath.  It was then that I realized that life would probably never be “normal” again.  But, I was on the treadmill walking two weeks after surgery and back in spinning classes 4 weeks after surgery.   I was determined to get back on that spinning bike and continue like I still had two lungs! 
    The first question people ask me when I tell them that I am a lung cancer survivor is “DID YOU SMOKE?”  I think non-smokers ask because they hope I’ll say yes, so they can feel safe.  But none of us is “safe”.  What’s so awful about that question is that if you are a smoker, you probably feel horrible about it.  Almost everyone who smokes wants to quit – the majority of the people started when they were young and got addicted.   Anyone who is diagnosed with cancer will ask themselves, “Why Me” and try to figure it out.  The thought that you may have brought it on yourself is devastating.    Do they deserve the disease because they smoked?  NO!  No one deserves this horrible disease! Today LC needs to be on the radar screen for everyone, not just people who smoke.   I hope in the years to come LC will get the recognition of other cancers, and a cure will be found.
    I tried to return to my life before cancer, but found it was impossible.  My whole world had been shaken and I realized that I would never return to the life I had led before.  I was a survivor and I was determined to help other people diagnosed with lung cancer.
    The best thing that I found on the internet while researching lung cancer, was the Lung Cancer Support Community.  It was an on-line community of over 7000 members who had been affected by lung cancer.  Some were survivors, some were caregivers, but they were the most caring bunch of people I have ever known, and I certainly needed that.   Although I will have to get a CT scan and visit my doctor in Baltimore every year for the rest of my life, it is a small price to pay for saving my life.
     By far, my biggest challenge has been conquering the fear of recurrence.   Some days are almost worry free, others are not.  The fear is always there.  But I’m proud to say that I am now 10 years cancer free!  After 5 years the doctors call you “cured”.  What a nice word.  I may be cured, but I am still a member of the cancer community and always will be.  I will continue to advocate for lung cancer research until we have a reliable early detection method and adequate funding for research so that everyone else can be as lucky as I am!
  14. Like
    KatieB got a reaction from Merilee for a blog entry, Trish Strulson   
    My Journey Belongs to Me

    Based on statistics, lung cancer has a five-year survival rate of 17.4%. For many, it’s a death sentence but for me, this meant nothing since I am not a statistic. I came to the realization that, everyone else’s cancer is not my cancer, because my journey belongs to me, my symptoms were different, and the recovery process seems to be a lifelong event.

    My journey began in September of 2013, with the stigma that somehow I brought this on myself, that it was self-inflicted, or maybe I deserved it. I was told no two cancers were alike, and this cancer would belong to me, for as long as I fought. So there was no need to do Internet searches, book readings, or viewing statistics, because this would only make me feel as though, I was given a death sentence. And those who told me that, were absolutely correct. However, I did Internet searches, book readings and viewed statistics, only to discover that over one-half of people diagnosed with lung cancer die within the first year of being diagnosed. I found out, every 2 ½ minutes, someone else is diagnosed, and every 3 minutes; someone dies of lung cancer. I didn’t even know I had cancer at this time, but the grave digging had already begun.

    Due to the information I had gathered over the Internet, I found my symptoms, were quite different from others. I had gone to the emergency room due to a stomach ache, which continually worsened over the next week, and I just couldn’t tolerate the pain any longer. The ER physician decided he wanted to do a CT scan of my abdominal region. An hour later, he returned with not many concerns for the pain I was experiencing, but instead with the nodules he found in my left lung. This was the only thing I heard, because I could only see his lips moving, but couldn’t hear his words. The only real memory of that day, was the machines beeping and the orange drink before the scan being nasty. He referred me to be seen by a pulmonary doctor, immediately.

    My pulmonary doctor wanted to do a PET scan; the nodules lit up my cancer like the 4th of July. On November 15th, immediately following the results, I was whisked away, thinking the nodules will come out, and all will be right with my world. I woke up unable to move, and my daughter standing over my bed crying; she would be the one to deliver the news; I had lung cancer and they had removed my left lower lobe. My only memory, of my actions following this news, was smiling, and turning my head away, to cry myself back to sleep. I was discharged from the hospital four days later to start my chemo therapy, and my recovery process. My doctors wanted to go after this cancer very aggressively, and prescribe me to endure chemotherapy, using 2 of the harshest medicines available, Cisplatin/Alimta. I was a very lucky woman not to experience a lot of the effects from chemotherapy that others had endured. Everything was injected through a power port, located in my chest; the taste of the medicine was like chewing on a metal can. My doctors believe my good health and attitude prior to the diagnosis, had prepared me for this journey I was going through, and it’s what got me through it.

    My recovery process seems to be a lifelong event, and every day, I am faced with what seems to be a new obstacle. Lyrics to a John Lennon song say it best: “One thing you can’t hide is when you’re crippled inside.” Over the course of the last two years, I have tried to stay positive. I have made jokes about myself, and this disease, because this is how I have been able to deal with this tough situation. I have cried, and screamed, going through every emotion possible, and just now; I am starting to recognize, that person who looks back at me in the mirror. My brain operates a little differently; my heart has hardened; my ears don’t hear as well; and at times; I have an overwhelming feeling of sadness, but yes, it appears every piece of my body has been affected by this damn disease. I know I will find my way, and I will survive, but for some reason, at times, I tend to be struggling really hard just to get started. The cancer not only has affected me, but it has also affected those around me. I have family members, whom I barely have a relationship with; due to the fact, I never heard from them through this whole process. Resentment is a really hard pill to swallow, but I just can’t seem to let that one go. My marriage of 22 years came to an end; we were more strangers, than we were partners. Instead of this disease bringing us together, it drove us farther apart. I even lost my job of six years, two days after I got my first clean scan. The lung cancer roller coaster sucks...everyone says to take one day at a time, but really? I don’t want to take one day at a time; that’s not how I live my life.

    My journey has taken me to places; I couldn’t even imagine. I will forever bear the scars, and experience some symptoms, but the recovery process will be mine, for a lifetime. As far as I can see, their cancer has been nothing like my cancer. It didn’t cost me my life, my hair, or I didn’t even lose weight. Through the entire journey, I was constantly told, “You don’t even look sick.” One of the greatest side effects I experienced was the ability me to look at my life, take charge, and make changes to it on my terms. It’s all about being in a happy productive place, so I have removed individuals from my life, and added some new ones, doing things I had never done before. I have gone back to school, something I have wanted to do for years, but never believed in me enough, to do it. I believe everything happens for a reason, and I as much as cancer sucks, it made me take a look at my life, take control, and start living again. For that, I will be forever grateful.
    I have been though a lot over the course of the past 2 years, but to be where I am and who I am today…..I would do it all again.

  15. Like
    KatieB got a reaction from RuthieThomas for a blog entry, Submitted by Donna Fernandez   
    When my Stage IV lung cancer was discovered in October 2012, I was, as far as I knew, as healthy as I have ever been in my life. I was playing agility with my two dogs three or four nights a week and every weekend. For those who do not know, agility takes a lot of stamina and energy! (https://www.youtube.com/watch?v=OCFrUCu6F_g)

    I went to the doctor because I kept gaining weight. No matter what I did, I couldn't lose it. Since I had always been tall and thin, the extra weight was disturbing me. I self-diagnosed thyroid issues.

    I am not a doctor goer. When I went to the doctor on that fateful October day, it was the first time I had been in 10 or more years. I chose the doctor based on her name – I knew someone else who had the same name – and the fact that she took my insurance. This was the luckiest choice I could have ever made.

    The doctor felt a very, very small knot on my collarbone. She sent me for a CT scan. That day.

    She called in a few days to tell me that my thyroid was fine, but I had some strange cell activity in my lungs. I needed a PET scan, she said.

    I had never heard of a PET scan. When we got off of the phone, I immediately began to research. And, what I found was scary. PET scans are used to determine malignant activity. Cancer????? Me????? But, I was as healthy as I had ever been.

    Sure enough, I was diagnosed with cancer. Specifically, I was told I had Stage IV adenocarcinoma of the lungs that was both inoperable and could not be radiated. Chemotherapy was my only option.

    I had watched my father die of lung cancer back when I was in my early 20s. His cancer was also discovered by accident, during a routine physical required by his place of employment. Six months later, at barely 49, my dad died. He went through hell during those six months after diagnosis, suffering through chemo and radiation. I had always said chemotherapy was something I would never, ever do.

    Until it was my only choice.

    I began chemo – a cocktail of Avastin, Alimta, and carboplatin – in early December 2012. I was one of those people who had a difficult time. No matter what nausea medicine we tried, I was incredibly sick the first week after an infusion. Fortunately, my health improved by leaps and bounds during weeks two and three. I was feeling pretty good when it was time for yet another infusion.

    I underwent four infusions of the three drugs. My tumors responded. They didn't go away, but they shrank. After four treatments, my oncologist decided to change the treatment. For four more treatments, every three weeks, I received Avastin. I am one of the unusual ones. Avastin made me as sick as the three-chemo infusions had.

    However, my tumors had responded. They shrank. They didn't spread. My oncologist was happy. He decided to give my body a break and stop all treatments for awhile. He expected my tumors to remain stable. But, a CT scan revealed that it wasn't to be. The tumors had grown back to nearly the size they had been prior to beginning treatments.

    The oncologist told me that I basically had two choices. I could begin another line of chemo, with a drug that wasn't as effective and that had worse side effects than those I had already had. Or, I could participate in a clinical trial. It was not a difficult decision for me at all. I chose to go into a clinical trial.

    I really didn't have great expectations for extending my own life, but I wanted to help others coming up behind me. So, I went to the UT Southwestern Medical Center, one of 69 NCI-designated cancer centers, in July 2013.

    Nearly immediately, I was fortunate enough to get into a Phase III clinical trial. In this Phase, the drug or treatment is given to many people to confirm its effectiveness, monitor side effects, compare it to other treatments, and collect information that will allow the drug or treatment to be used safely. In my trial, the efficacy of the experimental treatment, immunotherapy, was compared to a known and common chemotherapy, Docetaxel. I was happy that I drew the straw that allowed me to receive the experimental drug.

    Entering the clinical trial was the best thing that could have ever happened.

    I now have been in the trial for over two years. I responded to it
    immediately. Since I began the trial, my tumors have been completely stable. I have very, very few side effects. The worst happened early on – my thyroid quit working properly, so I now take a little pill once a day.

    I go every two weeks for blood tests, doctor visit, and treatment. The treatment itself takes an hour to drip. Until recently, I was required to have CT scans every 6 weeks. However, the drug company amended the trial plan and I now have scans every 12 weeks.

    The clinical trial and the immunotherapy gave my life back to me. I am able to live fully and completely – at a time when no one expected me to still be alive, much less living well!

    I am: a lung cancer survivor

  16. Like
    KatieB got a reaction from RuthieThomas for a blog entry, Submitted by Bobbie   
    I was diagnosed with SCLC January 2009 and as of today, 10/6/15, there is nothing in my lung except a scar from radiation. No sign of cancer. I beat the odds. I had 5 rounds of Chemo and started chest radiation after the second round. I started PCI 2 weeks after the final chest radiation. My radiologist gave me a lower dosage for the PCI and an additional 2 treatments because I also have MS and PCI causes demyelination.
    I am cold all the time. I used to be hot. I don't sleep well. I am scared that it will return somewhere else in my body.
    You may have heard the saying “I have cancer but it doesn't have me!” I say B--S---! You never get over the scare. I am a 67 year old female. There is hope!
    I am: a lung cancer survivor
  17. Like
    KatieB reacted to Tom Galli for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  18. Like
    KatieB reacted to Tom Galli for a blog entry, Lung Cancer's Painful Quadratic Equation   
    Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions:  x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
    The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable.  Mine is chronic pain.  So to the question, how does one fit a negative outcome into the positive?  No, Algebra does not help.  But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
    My chronic pain has two primary and many secondary causes.  I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints.  It is a common Taxol side effect, and we informally call it “taxol toes.”  Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
    My strategy is to tolerate chronic pain until bedtime.  Then something must be done or I won’t sleep.  I’ve cycled through over-the-counter, then prescribed sleep medications.  Both worked for a while.  Doc found a study suggesting a therapeutic effect for Xanax on chronic pain.  He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg.  This relaxes me and makes me drowsy.  It works about 6-in-10 nights. 
    A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft.  The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve.  Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief.  Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
    Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax.  Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet.  A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used.  The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
    The next works only for feet and is a back-up strategy if lidocaine fails.  My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot.  The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
    Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels.  I take at least 500 mg of Magnesium supplement per day.  My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill.  Regardless, I still experience one to two cramping events per day.  When they occur anywhere near my feet or chest, chronic pain soars.   There is however, no remedy for cramps.  The worst occur in the middle of the night and wake me up.
    Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain.  The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain.  Almost every day our community pool is open, I spend hours in the water.  This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic.  Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion.  A hot tub works fine, but there is no difference in pain relief from water temperature. 
    Flying in a commercial airliner also spurs chronic incision pain.  Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude.  This lower-than-sea-level pressure expands my chest cavity increasing incision pain.  All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight.  Not flying is the only remedy.  Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
    Another secondary cause is extensive coughing and sneezing.  Sneezing is particularly bad when it is a “surprise sneeze”.  During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session.  The last secondary cause I have the most control over: stress, anger and excitement.  Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles.  These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
    My wife reminds me when I complain too much that I am lucky to be alive.  What’s a little pain given the alternative.  She’s right.  Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes.  He’s right.  Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.  
    Now if the Eagles start winning, everything will be fine!
    Stay the course.
  19. Like
    KatieB got a reaction from Tom Galli for a blog entry, Submitted by Katie Gilley   
    My hubby of 19 years, Jeff was diagnosed with stage 4 NSCLC on July 31, 2015. He has the EFGR mutation and is responding well to Tarceva. He is 49, never smoker. He has three tumors in his lungs and a page and a half of mets in his bones! Lots of tumors. He lost 35lbs and he was already a lean bean. I tell you all this, so you know there is hope. He was in bed for two and a half months. Two days ago he was climbing a ladder and swinging a hammer. He was on 75mcg of Fentanyl and now is is NO pain medication. We are LIVING and fighting. We are hopeful of long term disease management. We know the Tarceva is critical but we also know LOVE, fresh air, positive thoughts and respect for the cancer has given him extra strength to fight harder. Our wish to all who battle this awful disease: is that you all find the good in your situation. Look for it; it is there. This is life changing and you can change for the best. Thanks for reading!

    I am: a loved one of someone with lung cancer

  20. Like
    KatieB got a reaction from Tom Galli for a blog entry, Submitted by Bobbie   
    I was diagnosed with SCLC January 2009 and as of today, 10/6/15, there is nothing in my lung except a scar from radiation. No sign of cancer. I beat the odds. I had 5 rounds of Chemo and started chest radiation after the second round. I started PCI 2 weeks after the final chest radiation. My radiologist gave me a lower dosage for the PCI and an additional 2 treatments because I also have MS and PCI causes demyelination.
    I am cold all the time. I used to be hot. I don't sleep well. I am scared that it will return somewhere else in my body.
    You may have heard the saying “I have cancer but it doesn't have me!” I say B--S---! You never get over the scare. I am a 67 year old female. There is hope!
    I am: a lung cancer survivor
  21. Like
    KatieB got a reaction from Tom Galli for a blog entry, Submitted by Donna Fernandez   
    When my Stage IV lung cancer was discovered in October 2012, I was, as far as I knew, as healthy as I have ever been in my life. I was playing agility with my two dogs three or four nights a week and every weekend. For those who do not know, agility takes a lot of stamina and energy! (https://www.youtube.com/watch?v=OCFrUCu6F_g)

    I went to the doctor because I kept gaining weight. No matter what I did, I couldn't lose it. Since I had always been tall and thin, the extra weight was disturbing me. I self-diagnosed thyroid issues.

    I am not a doctor goer. When I went to the doctor on that fateful October day, it was the first time I had been in 10 or more years. I chose the doctor based on her name – I knew someone else who had the same name – and the fact that she took my insurance. This was the luckiest choice I could have ever made.

    The doctor felt a very, very small knot on my collarbone. She sent me for a CT scan. That day.

    She called in a few days to tell me that my thyroid was fine, but I had some strange cell activity in my lungs. I needed a PET scan, she said.

    I had never heard of a PET scan. When we got off of the phone, I immediately began to research. And, what I found was scary. PET scans are used to determine malignant activity. Cancer????? Me????? But, I was as healthy as I had ever been.

    Sure enough, I was diagnosed with cancer. Specifically, I was told I had Stage IV adenocarcinoma of the lungs that was both inoperable and could not be radiated. Chemotherapy was my only option.

    I had watched my father die of lung cancer back when I was in my early 20s. His cancer was also discovered by accident, during a routine physical required by his place of employment. Six months later, at barely 49, my dad died. He went through hell during those six months after diagnosis, suffering through chemo and radiation. I had always said chemotherapy was something I would never, ever do.

    Until it was my only choice.

    I began chemo – a cocktail of Avastin, Alimta, and carboplatin – in early December 2012. I was one of those people who had a difficult time. No matter what nausea medicine we tried, I was incredibly sick the first week after an infusion. Fortunately, my health improved by leaps and bounds during weeks two and three. I was feeling pretty good when it was time for yet another infusion.

    I underwent four infusions of the three drugs. My tumors responded. They didn't go away, but they shrank. After four treatments, my oncologist decided to change the treatment. For four more treatments, every three weeks, I received Avastin. I am one of the unusual ones. Avastin made me as sick as the three-chemo infusions had.

    However, my tumors had responded. They shrank. They didn't spread. My oncologist was happy. He decided to give my body a break and stop all treatments for awhile. He expected my tumors to remain stable. But, a CT scan revealed that it wasn't to be. The tumors had grown back to nearly the size they had been prior to beginning treatments.

    The oncologist told me that I basically had two choices. I could begin another line of chemo, with a drug that wasn't as effective and that had worse side effects than those I had already had. Or, I could participate in a clinical trial. It was not a difficult decision for me at all. I chose to go into a clinical trial.

    I really didn't have great expectations for extending my own life, but I wanted to help others coming up behind me. So, I went to the UT Southwestern Medical Center, one of 69 NCI-designated cancer centers, in July 2013.

    Nearly immediately, I was fortunate enough to get into a Phase III clinical trial. In this Phase, the drug or treatment is given to many people to confirm its effectiveness, monitor side effects, compare it to other treatments, and collect information that will allow the drug or treatment to be used safely. In my trial, the efficacy of the experimental treatment, immunotherapy, was compared to a known and common chemotherapy, Docetaxel. I was happy that I drew the straw that allowed me to receive the experimental drug.

    Entering the clinical trial was the best thing that could have ever happened.

    I now have been in the trial for over two years. I responded to it
    immediately. Since I began the trial, my tumors have been completely stable. I have very, very few side effects. The worst happened early on – my thyroid quit working properly, so I now take a little pill once a day.

    I go every two weeks for blood tests, doctor visit, and treatment. The treatment itself takes an hour to drip. Until recently, I was required to have CT scans every 6 weeks. However, the drug company amended the trial plan and I now have scans every 12 weeks.

    The clinical trial and the immunotherapy gave my life back to me. I am able to live fully and completely – at a time when no one expected me to still be alive, much less living well!

    I am: a lung cancer survivor

  22. Like
    KatieB got a reaction from Tom Galli for a blog entry, Submitted by Jan Gibson   
    My cousin Kathi, who was more like a sister to me, died of lung cancer in December 2003.  She was 46 years old.   At the time, I didn’t know the first thing about lung cancer.  Since Kathi smoked for years, I thought that’s why she got lung cancer.   I didn’t think too much more about lung cancer for the next year, although I thought about Kathi every day.
    Then, about a year later, I had a sharp pain in the right side of my chest, like a knife stabbing through my chest and back.  I thought that I might be having a heart attack.   I exercised regularly, ate fairly well, and was always concerned about heart disease because my dad had died of a heart attack at age 40 and 3 of my grandparents had died of heart disease.  So I knew it ran in my family.  My husband took me to the emergency room and after lots and lots of tests, it was determined that my heart was fine, but they found this tiny little mass on my left lung.  I was told by my family doctor that it was very possibly lung cancer.   But my pain was on the right side…. The tumor was on my left lung.   This didn’t make any sense! 
    They never did find out what that pain was.   It definitely wasn’t the cancer.  All I can say is that somebody was trying to tell me something.   If I had not gone to the emergency room that day, my cancer would most likely not have been diagnosed until it was too late, like Kathi.  After a pet scan, I was sent to University of Maryland in Baltimore to see a lung cancer specialist.  They immediately did a lung biopsy which confirmed their suspicion.  It was non small cell lung cancer.    How could I have lung cancer?  I was only 46, I didn’t smoke, I exercised 5 to 6 times a week, I had regular check ups, I ate well….how could I have lung cancer?  I immediately got on the internet and began researching lung cancer.  What I saw was very disturbing, to say the least.   The only statistic that I could remember from that evening was that 95% of lung cancer patients do not survive more than 5 years!    I was just devastated. 
    I wouldn’t be able to see my daughters grow up, I wouldn’t be able to see my grandchildren.  Now how was I going to tell my daughters?  They had just watched my cousin die of lung cancer!  I told my younger daughter first, she was 11 years old at the time.  As I looked at her, a fierce feeling of determination came over me.   I WILL fight this, and I WILL beat this!   I have to.  My kids need me and I need them!  I explained to her that mine was a different type of lung cancer than Kathi had and that it was found very early, unlike Kathi’s.  I was trying to downplay it as much as I could to prevent her from worrying.  And it worked.  Several months later  I was sitting at my desk at home, and she saw a Lung Cancer book on my desk.  She came over, picked up the book, read the title and said “Oh Mom, you didn’t even have it that bad!”.   My older daughter was away at college at the time, so I called her and asked her to meet me for lunch.  She was 20 years old.   I explained it to her just like I did to my younger daughter.   They both seemed to take it very well.    
    I was then sent for more tests and finally some good news!  The cancer had not spread to my lymph nodes.  It looked to be contained in one of the two lobes of my left lung.  This meant that I was a candidate for surgery, which meant the best chance of a cure!  I was diagnosed at Stage 1A.  So, on April 20, 2005  I had the upper left lobe of my lung removed at the University of Maryland Medical Center.   I was able to have VATS surgery, Video Assisted Thoracic Surgery.  The day I came home from the hospital, I tried to walk up the stairs at my house.   About half way up, I stopped and couldn’t breathe.  I had to sit on the step for about 5 minutes to catch my breath.  It was then that I realized that life would probably never be “normal” again.  But, I was on the treadmill walking two weeks after surgery and back in spinning classes 4 weeks after surgery.   I was determined to get back on that spinning bike and continue like I still had two lungs! 
    The first question people ask me when I tell them that I am a lung cancer survivor is “DID YOU SMOKE?”  I think non-smokers ask because they hope I’ll say yes, so they can feel safe.  But none of us is “safe”.  What’s so awful about that question is that if you are a smoker, you probably feel horrible about it.  Almost everyone who smokes wants to quit – the majority of the people started when they were young and got addicted.   Anyone who is diagnosed with cancer will ask themselves, “Why Me” and try to figure it out.  The thought that you may have brought it on yourself is devastating.    Do they deserve the disease because they smoked?  NO!  No one deserves this horrible disease! Today LC needs to be on the radar screen for everyone, not just people who smoke.   I hope in the years to come LC will get the recognition of other cancers, and a cure will be found.
    I tried to return to my life before cancer, but found it was impossible.  My whole world had been shaken and I realized that I would never return to the life I had led before.  I was a survivor and I was determined to help other people diagnosed with lung cancer.
    The best thing that I found on the internet while researching lung cancer, was the Lung Cancer Support Community.  It was an on-line community of over 7000 members who had been affected by lung cancer.  Some were survivors, some were caregivers, but they were the most caring bunch of people I have ever known, and I certainly needed that.   Although I will have to get a CT scan and visit my doctor in Baltimore every year for the rest of my life, it is a small price to pay for saving my life.
     By far, my biggest challenge has been conquering the fear of recurrence.   Some days are almost worry free, others are not.  The fear is always there.  But I’m proud to say that I am now 10 years cancer free!  After 5 years the doctors call you “cured”.  What a nice word.  I may be cured, but I am still a member of the cancer community and always will be.  I will continue to advocate for lung cancer research until we have a reliable early detection method and adequate funding for research so that everyone else can be as lucky as I am!
  23. Like
    KatieB got a reaction from Tom Galli for a blog entry, Submitted by Melissa Crouse   
    10 years ago I was diagnosed with NSCLC and was told that with an operation and treatment, I had 3-5 years to live .  
    After an upper left lobe resection followed by systemic chemo I went into remission and enjoyed 2 1/2 years of precious time.  Then, a checkup revealed that I had 17 mets to my liver and a couple of “hot spots” in my lungs. At that time I joined the already very full ranks of stage 4 NSCLC patients.  The day I was to begin another course of chemo, my oncologist recommended that I try a clinical trial, so I did.  
    My attitude then and my attitude now is “What have I got to lose?”. That clinical trial knocked all the cancer away and gave me more time, but the nature of NSCLC is sneaky and persistent.  Things flared up again after about a year and a half and for several years I was put on different cocktails of drugs that gradually were being approved by the FDA. During that time I continued to teach school and I lived a full and productive life.
    There were some significant bumps along the way, but I’m still here. Flashing forward to the present, I am now on my 5th clinical trial which is successfully knocking back my cancer and giving me more time. Participating in clinical trials have kept me going in this chess match.  They have put cancer in check several times and are key to bridging the gap from treatment to treatment.
    I have seen tremendous advances during these 10 years and I feel the cure is just around the corner. I will continue to take advantage of clinical trials because I’m just too busy with life.  
    Also, I want more time.  Time for family and friends.  Time to see grandchildren being born and grow up. I just want time.  
    Clinical trials have made that possible.   

     

  24. Like
    KatieB got a reaction from Tom Galli for a blog entry, Depression in Lung Cancer Patients   
    It’s normal for someone diagnosed with cancer to experience feelings of sadness, fear, anger and grief.  It’s when those feelings prevent you from functioning in your everyday life and you feel emotionally paralyzed in your situation for an extended period of time that you need to seek help.
    Cancer patients experience depression two times more than the general population and studies have shown that mental health and social well-being can affect the success of treatment.  Those diagnosed with cancer have life plans that are interrupted, a change in physical activity and ability, role changes in relationships, and career, may experience a loss of self-image or sense of self.  They also experience fears about the cancer growing within their bodies, anxiety about the success or failure of treatments, worry over their families and caregivers and may fixate on the possibility that their lives will be cut short from their disease.
    Those diagnosed with lung cancer have an additional set of issues facing them.  Some may experience the stigma associated with the disease and experience anger or guilt, isolation or shame depending on whether or not they had a smoking history and whether or not they feel they are getting adequate medical and emotional support from their local communities.
    Lung cancer survivors may also feel outrage, anger and a sense of being forgotten because of lack of public awareness and support of the disease in the media, limited treatment options available for the disease and sparse funding that goes to research the disease.
    Depression is more than just the normal feelings of sadness. Depression is when an individual experiences at least one of the following symptoms for more than two weeks:
    Feeling sad most of the time Loss of pleasure and interest in activities you used to enjoy Changes in eating and sleeping habits Nervousness Slow physical and mental responses Unexplained tiredness Feeling worthless Feeling guilt for no reason Decreased concentration ability Thoughts of death or suicide Getting help for your depression can help your cancer experience feel less challenging; it may help your relationships with the people around you may give you back some sense of control over certain parts of your life.
    Visit the National Cancer Institute for more information on depression in cancer patients and call your doctor if you feel like you may be suffering from depression.

    ______________________

    Did you experience depression with your lung cancer diagnosis?
    Share your tips on how you dealt with your depression by commenting below.
  25. Like
    KatieB reacted to Cheryncp123 for a blog entry, My name is Eleanor   
    My name is Eleanor
    I have cancer, but it is not who I am.
    I am not a number or the result of a
    lab test.
    My name is Eleanor
    I am a baby at my mothers breast.
    I am a toddler being thrown high in
    the air by my father and giggling.
    I am a young girl playing with my
    dolls and my trucks.
    I am a teenage girl going on my
    first date full of nervous anticipation.
    I am graduating high school and
    trying to figure out what next.
    I am a young woman walking down
    the aisle with the love of my life.
    I am an employee and a homemaker
    I am a new mother.
    I love my family, my friends, roses, cooking
    and reading.
    I love watching sappy old movies and
    going through a box of tissues while
    munching on popcorn.
    I love to dance and sing.
    I am a woman, a wife, a mother, a sister,
    a granddaughter,a niece, an aunt, I am
    a grandmother and a great grandmother.
    I am all of these things and more but what
    I am not is a disease.
    I have cancer and it may destroy my body
    but it cannot touch my spirit or my soul.
    So you see although my body may have cancer it does
    not have me.
    My name is Eleanor.
×
×
  • Create New...