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KatieB

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  1. Like
    KatieB reacted to Lisa Zarov for a blog entry, LUNG CANCER, COVID AND GRIEF – IT’S COMPLICATED   
    Being part of the lung cancer community for almost 5 years now, I am often in awe of the fiercely close, supportive and loving connections that are made between its members. We learn together, advocate together, and celebrate life together. And, when someone in our community dies – which unfortunately happens often – we mourn together. For many, it is a deep grief we feel – for the person we lose, their loved ones, and ourselves.
    Yet during the COVID-19 pandemic, many survivors have had additional grief – grief over moments and experiences we have lost. And the pandemic has been a thief of so many of them. Like everyone in the world, we want to be with loved ones, hug, celebrate, and travel. And we want to be physically present when it is time to support a fellow survivor, or to mourn one. Losing moments and experiences like these can be much more devastating to those living with Lung Cancer. Our heightened value of the preciousness of time can make our grief more potent and complex.
    If you are experiencing grief, what can you to do to take care of yourself? Processing grief is a very individual experience. However, the most important thing I encourage is for you to experience every feeling, no matter how painful and disruptive. If you push your feelings aside, they will inevitably find their way back to you, and usually in ways that are more difficult to heal from. Talk to trusted friends about your grief. Write about it. Express your grief artistically, through art, music or poetry. And for those who are struggling, therapy can be so helpful, as most therapists have a great deal of experience working with grief and loss.
    Lastly, don’t forget to check in with your loved ones who are grieving.
    Connecting, even if not in person yet, can be a lifeline.
    Lisa Zarov, MSW, LCSW 
     
    __________________________________________________
    LUNGevity understands that a lung cancer diagnosis can be overwhelming.
    To answer your questions, the Lung Cancer HELPLine offers toll-free, personalized support for patients and caregivers at any time along your lung cancer journey. Our oncology social workers are available to help you manage your emotional, financial, and support challenges.
    Dial 844-360-5864, Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm (Eastern time). Call as often as you need—LUNGevity is here for you with tools to help you navigate your lung cancer diagnosis.
  2. Like
    KatieB reacted to Lisa Zarov for a blog entry, Lung Cancer and Worry   
    After a Lung Cancer diagnosis, it is normal and expected for even habitually calm people to worry about their futures. But what happens when those worries begin to “take over”, interfering with your ability to enjoy your life? Most of us are familiar with the quote by Barbara Cameron, “Worry about tomorrow steals the joy from today”. However, as cancer patients, our relationships with worry are usually more complicated than that.  
     
    Worry, like any uncomfortable feeling, is often a signal that you have a need that has not been met. So, when you have a thought connected to a specific worry, try to dig under the surface of that thought.  
     
    For example, “I’m worried that my scan will show progression” or “I’m worried that I won’t survive” are thoughts that, on the surface, we can’t do anything about. They are reasonable to have, but “joy stealers”, so to speak. 
     
    Well, what if the unmet need behind those worries is  “I need my fear validated”, “I need to be heard” or even “I need a hug”? 
     
    Worries can also be motivating and empowering. For instance, worry about your children’s future might drive you to assign a legal guardian, should something happen to you.  Worry about the lack of funding for Lung Cancer might spur you to be an advocate.   
     
    The next time you have a worry related to your diagnosis, don’t dismiss it! Instead lean into it, feel it, and ask yourself the following questions –  
     
    “Is my worry revealing an unmet need, and how do I get it met?” 
     
    “Is my worry pointing me toward an empowering action?” 
     
    All of this said, a Lung Cancer diagnosis can be so frightening, and personal circumstances so complicated, that sometimes worry is just too hard to manage.  Options like therapy and medication can provide critical relief.   After all, joy is a reasonable goal – and with the right support, it is within reach.  
     
    Lisa Zarov, MSW, LCSW 
     
    __________________________________________________
    LUNGevity understands that a lung cancer diagnosis can be overwhelming.
    To answer your questions, the Lung Cancer HELPLine offers toll-free, personalized support for patients and caregivers at any time along your lung cancer journey. Our oncology social workers are available to help you manage your emotional, financial, and support challenges.
    Dial 844-360-5864, Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm (Eastern time). Call as often as you need—LUNGevity is here for you with tools to help you navigate your lung cancer diagnosis.
  3. Like
    KatieB reacted to Susan Cornett for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  4. Like
    KatieB reacted to DanielleP for a blog entry, A Strange New World...Or Is It?   
    I am sure I am not alone when I say that the past few weeks have felt like a few years. I cannot imagine the heartbreak of those who have lost someone to this new viral threat, and the fear felt by those who have been diagnosed or who love someone who has been diagnosed.
    As we all hunker down as best we can for the greater good, several concerns float through my mind, like stones skipping on water. I am sure this is true for all of us who are caregivers. We may be pushing through the laundry or the dishes or the Spring cleaning while we are experiencing this odd calendar-clearing, but the backs of our minds are full of what-ifs. And yet, as new and strange as this situation truly is, the stones skipping on the water--the what-ifs in the backs of our minds--all feel soberingly familiar, don't they?
    Quicker and shorter shopping trips. A meditative focus on handwashing. A bundling up of the medically vulnerable loved one away from exposure. Removal from social situations because the fun that would be had just isn't worth the risk. A gathering of resources and emergency plans so that they are at-hand. The medical team on speed dial. An assumption that all pathogens everywhere are threats to the integrity of one's health and peace of mind. A vigilant awareness of the simple, icky "everywhereness" of the germs. The steps that we are dutifully following as given by experts for the current crisis are substantially similar to the steps we tend to take even on a normal day. It is true that our lives are rife with precautions that are over and above what most folks have to think about in addition to their regular routines.
    As I see how my friends, colleagues, and acquaintances are handling this sudden requirement to stay home for the foreseeable future, the differences between the daily itinerary of a caregiver and the daily itinerary of someone who is not a caregiver become abrasively clear. The folks who are clearly bored within their four walls baffle me the most: do they not have a medication schedule to keep up? Do they not have dietary restrictions to research before making dinner? Do they not have piles of bedclothes that must be kept immaculately clean? The folks who are bouncing off the ceiling trying to find something to do with their newfound time at home are like exotic creatures to me. What would that be like? I've been doing this for so long that I don't remember a to-do list that wasn't pages deep that all related just to the logistics of this house and the needs of the people inside it. To put it briefly and bluntly: to all my friends who are now working from home, welcome to the world of a caregiver. I am always working when I am at home, and when I am working, I am always at home. 
    I say this all with my tongue in my cheek, of course, with nothing but support and understanding for all my friends who have been abruptly dumped into this situation. But for my brotherhood and sisterhood of caregivers, I say: do not be discouraged by the inconveniences of the sheltering in place. Rather, try and be encouraged by all the ways in which we already know how to deal with isolation and medical uncertainty. Unlike our friends who are not in this boat with us, we know that we are always waiting for shoes to drop. We never know which shoe it will be, but we know one will fall. We are always expecting the unexpected. We are always wondering what new diagnosis might arise, and always wondering how to best seek help for it. So, we have solid plans in place. Blueprints with well-worn edges. Our non-caregiving compatriots do not have the benefit of that foresight. This is not to say that there aren't practical problems in our laps right now that are aggravated by the current state of affairs. To be sure, there are many. There are prescription shortages, doctor unavailability, and treatment postponements, just to name a few; and, of course, the elephant in the room: the stultifying fear of a bug that seems to target our very worst fears. 
    But...I daresay we have already imagined these contingencies many times before, and we have developed work-arounds for them just like an immune system develops antibodies. We are, indeed, an extra "immune system" of sorts for our loved ones. A barrier. A first alert system.
    We are grieving this international crisis together, and we are fearing deeply for our loved ones for obvious reasons, but take heart in this one thing if nothing else: we have trained for this. We have lived this possibility. Many of us have even had dress rehearsals. I offer you these thoughts in love and solidarity, in hopes that the only-natural fear will not immobilize you, but mobilize you, by helping you to recognize your strength. Let's turn our efforts outwards, to the best extent that we can under the circumstances, and help those who are not prepared. Let's band together in hope and action. We're all in this together. <3
     
     
  5. Like
    KatieB got a reaction from Pattymac for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  6. Like
    KatieB got a reaction from Kate7617 for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  7. 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.   

     

  8. Sad
    KatieB got a reaction from Msladeebugg76 for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  9. Like
    KatieB got a reaction from Steff for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  10. Like
    KatieB got a reaction from Barb1260 for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  11. Like
    KatieB got a reaction from BridgetO for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  12. Like
    KatieB got a reaction from PaulaC for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  13. Like
    KatieB got a reaction from Susan Cornett for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  14. Like
    KatieB got a reaction from Tom Galli for a blog entry, You are not always your own best advocate   
    Last week I took a local lung cancer patient and long time friend "J" to get his scans. This will be a very abbreviated account of what happened.
    Even though we are only an hour apart, I haven't seen "J" in a couple of years.  He has an incredible story of being dx in his 30s and some amazing heroic efforts when into saving his life.  He's even been in the news and media.  Since that time 10 or more years ago, he's struggled to live and battled a few recurrences.  
    They "think" he had a recurrence at the end of last year.  Several bronchoscopies yielded no detectable mutations and caused several complications for him.  He has lost a significant amount of weight (6'1 and 140 pounds) and he hasn't been able to stop coughing.
    His dr scheduled a PET scan.  Because "J" could no longer drive, he asked me if I could take him to the testing facility.
    I could not believe what I saw.  He was SO thin and his speech as a little slurred.  He looked glassy-eyed. The nurse had a hard time accessing a vein.
    Because he couldn't hold a conversation or drive himself- I borrowed a wheelchair from the testing facility.  I filled out his paperwork- dug into his wallet for his ID and medicare card.  He has been on oxygen and the machine that the company shipped to him was faulty.  When he called them they said they could come in 2 days.  TWO DAYS?  I drove him to a pharmacy that sold oxygen and had it fixed.
    The entire time I kept thinking...what would have happened if I could not have come today?  What would have happened if I wasn't here?  He would have tried to drive himself.  He would have been in serious trouble.  He would have been out of oxygen and maybe in an auto accident.  
    The PET nurse couldn't do his infusion because his blood sugar levels were frighteningly high- even though he said he hadn't eaten in about a week due to no appetite.
    I just felt like things were going sideways.  I asked him to call his oncologist.  He spoke with the nurse.  He asked her if she would order some fluid because he has been confused and weak.  She said no.  "Just drink extra water and mix in some gatorade."  He hung up and looked defeated.  He told me that the nurse said no.  He didn't have pain meds.  He didn't have medication to help with the cachexia, he didn't have medicine to help with his cough...he didn't have a working oxygen machine. Now this nurse was telling him he couldn't have a bag of fluids.
    WHAT?  ANYONE can go to the ER.  "I'm taking you to the ER for fluids!"
    So off we went.  I took him straight to the ER and he didn't argue.
    Long story a bit shorter- he ended up being admitted for some serious issues.  They transferred him from one location to another one downtown. He got his fluids.  The last time I saw him he was eating his lunch in his hospital room.
    He isn't out of the woods- not by a long shot.  But he is a better than when we started.
    Why am I sharing this story? Because "J" is college educated.  He has been in the lung cancer space almost a dozen years.  He understands the lingo and knows how to be an advocate.
    But what happens when  you are dehydrated, confused, malnourished, and in extreme pain?  How can you advocate for yourself?  
    If it's ever possible, please have someone with you- especially when you are feeling bad.  
     You are not always your own best advocate

  15. Like
    KatieB reacted to Susan Cornett for a blog entry, Taking a page from Tom's book   
    Today I celebrate three years of survival! I am so happy to have found this community of people.  You all make this journey so much better.

  16. Like
    KatieB reacted to Tom Galli for a blog entry, Acme Elixir - The Miracle Cure   
    Remember the western movie scene — the debonair dressed pitchman rides into a small frontier town in a wagon whose canvas sides are emblazoned with Dr. Arturo Pedic’s Acme Elixir.  He sets up a stage, draws a crowd, and delivers the pitch.
    Yessireeebob! My specially formulated Acme Elixir is a sure-fired medicament for any illness. One bottle of this miracle wonder is guaranteed to cure any malady.  It is an antidote for ablepsy, ague, apoplexy, barrel fever, biliousness, dropsy, camp fever, consumption, french pox, grip, and even bronze john fever. Step right up folks. Ten dollars buys this marvel medicine!
    According to an American Society of Clinical Oncology opinion survey, almost 40-percent of Americans believe alternative remedies alone can cure cancer — that’s right 40-percent believe in Acme Elixir! Oh my, we’ve been teleported right back to 1870 era medical idiocy! Our collective faith in evidenced based cancer treatment has taken a severe hit.
    Why? I see a parallel to the campaign against childhood vaccines.  In 1998, a fraudulent research paper published in The Lancet asserted combined measles, mumps and rubella (MMR) vaccine caused autism. Innumerable scientific studies proved vaccines harmless, but blaming autism on vaccines was a sensational and compelling newsworthy story, and I remember the stories! 
    The internet allows the easy creation of a sensational and compelling newsworthy event — a cancer cure.  Webpages abound with astonishing survival stories from treatment by this, that, or the other alternative medicine thing. One common thread: all promise a sure cure for cancer. These are very believable presentations with videos offering jaw-dropping testimony bolstered by pseudo-scientific mumbo jumbo.  The internet today functions like the 1870 era snake-oil salesman!
    When diagnosed with lung cancer, one has but three choices: do nothing, alternative methods, or evidence based methods. Do nothing costs nothing and may work because cancer sometimes stops metastasizing without treatment.  Alternative and evidenced based methods cost you money.  Evidence based methods have another seemingly unrecognized advantage: outcomes are repeatable. Surgery, targeted therapy, precision radiation or immunotherapy works the same way for a very, very large number of people. Funny how hard it is to rundown actual results for large numbers of people treated with sure cure Acme Elixir.
    Stay the course.
  17. Like
    KatieB reacted to DanielleP for a blog entry, The Pivot   
    “You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!”
    If you have ever had a loved one with cancer, you’ve heard these offers.  You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or—
    wait for it—
    when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient.
    There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme.
    And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being.
    If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once.
    But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool.
    At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?”
    And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and…
    She wasn’t!
    She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!”
    And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play.
    Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic.
    My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised.
    Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10.
    And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well.
    (If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask).
    The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script:
    Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.”
    Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?”
    BOOM. Done. Weapon deployed.
    (The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question).
    Anyway: my favorite part of using the pivot tool?
    You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all.
    And, at the end of the day, they might actually come through.
  18. Like
    KatieB reacted to DanielleP for a blog entry, The Simple, Profound Power of a Reset   
    Happy Monday, my friends!
    (Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!)
    I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too!
    There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings.
    I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season.
    I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward.
    In that way, a beginning is also a chance to reset.
    A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group.
    During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before.
    So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays…
    Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon.
    And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments.
    So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due.
    For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge…
    You get the picture.
    I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms.
    I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week.  
    This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix.
    We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb.
    And that laundry pile over there is just the right mountain.
  19. Like
    KatieB reacted to Susan Cornett for a blog entry, Another recurrence, another call to Mom and Dad   
    I've said it before and I'll say it again:  cancer can be as hard, if not harder, on the loved ones than the patients.  Our family is very close  - I don't have any siblings and my husband and I don't have children.  Our family unit is small.  After 2.5 years, my husband and I have a process.  He goes with me to all of my scan result appointments.  As soon as Super Doc gives us the results, Neal steps out and texts or calls my parents with the updates.  I always want to be with them if we have to give them bad news. My parents live 4 hours away; otherwise, I think they'd crowd into the exam room with us.
    Although we had to give them bad news a couple of weeks ago, we actually had something in our favor.  A lifelong friend of mine was visiting with them on the way to take her daughter to tour a college.  She was able to keep my parents somewhat balanced this time.  I'd been preparing them for the results - figured this was coming.  But no one wants to have to call their parents and tell them the cancer is back.  Stupid cancer.
  20. Like
    KatieB reacted to DanielleP for a blog entry, Caregiving 101...so to speak!   
    "Hindsight is 20/20!"
    "You know, in retrospect..."
    "Looking back now, I'd..."
    "If I had it all to do over again..."
    "If I had known then what I know now..."
     
    Chances are, if you're a caregiver, you're guilty of saying at least one of these catchphrases at least a little bit often.
    I know I am. A LOT a bit often!
    Why is that?
    Why is it that we never feel prepared to be a caregiver, and always feel like a little of our well-earned wisdom would have been useful at the beginning of our experience?
     
    Here's what I think: our loved one's diagnosis knocks us for a loop; we stumble, we grasp, we stand back up, we take action, and then we can usually coast for a while--and occasionally, the cycle repeats.
    But: we were never given a chance to study for this test. We weren't given a warning. We catch the curveball using the only skill sets we already have, and we run with it.
     
    Stumble:
    What the **** just happened?
    Where do we go from here?
     
    Grasp:
    Get our heads back in focus, get info, get a plan.
     
    Stand back up:
    We go through our days--every day--as best we can. Somehow, stuff gets done. If it doesn't, we move on.
     
    Take action:
    Take the info we found and start acting on the plan: a testing plan, a treatment plan, a scheduling plan, a support plan, any plan.
     
    Coast:
    The plans in place gradually become blessedly routine. The less work we have to do to establish the plans as the plans settle, the more surprised we are that our days do still revolve--but they just revolve around something we never would have expected. (This is sometimes referred to as the "new normal.")
     
    Any caregiver is familiar with this basic framework. 
    But:
    Finding the way that this paradigm can shift and meld onto any particular family, situation, or lifestyle?
    There's the rub.
    That's the part that's not so simple.
    The GOOD news is: that's the part where other caregivers are the best and most helpful resource.
    What calendaring app do you use? What foods help with nausea? What do you say to your kids? How do you organize medical information? Which chores should I prioritize? How can I draw boundaries with my family? How can I ask my friends for the support I need? How can I communicate better with my loved one's medical team? Where can I go for reliable supplemental information? How do I find self-care time? And, by the way, what IS self-care?
     
    At the end of the day, one thing is patently obvious: with most new life experiences, you may not even know what resource/help/knowledge you need (or needed!) until you are well on your way. Caregiving is a prime example.
     
    To that end: the best and most helpful source--the reference with the breadth and depth of life experience to draw upon--are your fellow caregivers. 
     
    LUNGevity has TONS of ways to connect with a network of folks with similar experiences. Just to name a few: the LUNGevity Caregivers Facebook group (http://facebook.com/groups/1009865522379898), the LifeLine mentorship program (http://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring), and the Caregivers message boards here on the Lung Cancer Support Community (http://lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community).
    (Not to mention the Caregiver materials library at http://lungevity.org/for-patients-caregivers/caregiver-resource-center).
     
    Also: LUNGevity hosts the only regular caregiver-focused Twitter chat in the lung cancer advocacy field. We meet on Twitter under the hashtag #LCCaregiver every first Wednesday of the month, starting at 8:00pm Eastern time. This is a sort of live chat room, addressing issues that caregivers want and need addressed. All are welcome!
     
    This month, we will be discussing this exact conundrum: what do you wish you had known before you became a caregiver? What can your fellow advocates (and advocacy organizations like LUNGevity) do to help you learn what you need to know at the front end? How can we help you "grasp" the info you need in order to make a smooth transition into your role, and get settled as quickly as possible in a somewhat comfortable routine? How can you be supported in your role by being given notice ahead of time of what you may need or want to know, do, or think of?
     
    How can you catch the signals ahead of other curveballs?
     
    To assist in answering these questions, and to continue this conversation, we'll be hosting a sort of "Caregiving 101" for our chat this Wednesday. Several experienced caregivers will offer their best advice--the things they wished they had known before starting their work of supporting their loved ones through a lung cancer diagnosis. Please join us to learn together; to hear from others who understand the ups and downs of what you're going through; to share your stories and your advice; and to help us understand how we can better help each other. 
     
    Wednesday, June 6th, 8pmET, on Twitter, at #LCCaregiver.
     
    I can't wait to "see" you there! Thank you, my friends!
     
     
     

  21. 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.

  22. 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.
     
     

     
  23. 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.
     
     

     
  24. 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.
  25. 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.
     
     

     
  26. 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.
     
     

     
  27. 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.
     
     

     
  28. 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.
     
     

     
  29. 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.
     
     

     
  30. 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.
     
     

     
  31. 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.
     
     

     
  32. 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.
     
     

     
  33. 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.

  34. 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.

  35. 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.

  36. 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.   

     

  37. 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.
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