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Karen_L

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  1. Like
    Karen_L got a reaction from Tom Galli in A New Chapter   
    Dear Tom, 
    I'm so, so sorry you are suffering. I hope you will seek ideas from a palliative care person. Most important, I hope there are approaches that might bring you some relief. I wish I had possibilities to offer. 
    I'm sure it feels like some doors are closing, but I'm also sure that you will try to find others you can push open. 
    Please keep us posted.
    Karen
  2. Like
    Karen_L got a reaction from BridgetO in Waiting in Limbo   
    You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read  about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that.
    If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it.
    I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing  
    It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums. 
  3. Like
    Karen_L got a reaction from kathe2024 in Waiting in Limbo   
    You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read  about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that.
    If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it.
    I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing  
    It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums. 
  4. Like
    Karen_L got a reaction from Sue BB in Everything you need to know about lung cancer but were afraid to ask, I think   
    I love that you are focusing on living! And I need to offer some caveats as you continue your lung cancer experience, perhaps for other folks who might be reading your blog than for you. (You sound like you are working your way into understanding that can sustain you and I'm glad for that.)
    I want to say that your friend's comment enters into the zone we call toxic positivity. It's often what some folks offer people with cancer when they don't know what else to say to show love or support. You're lucky to have such a stalwart friend who has given you something to hang on to that you value.  
    What I want to emphasize is that toxic positivity is also what many lung cancer folks use to beat themselves up (in the privacy of their own minds) if they have a recurrence of cancer after initial treatment.  That goes something like this: "Oh, I must not have had enough hope/eaten enough kale/taken enough vitamins/fill in the blank."
    What I've observed is that you can have all the hope in the world and lung cancer can still recur or spread or kill you. Or, you can have no hope and live for decades. You can eat a totally vegan diet and do all the other stuff you read about and have cancer recur or spread, or you can eat sugar and processed meats and live for decades. 
    Some of us find our way to hope swiftly. Others of us take a longer time to understand what hope means for us, or how different kinds of thinking can affect the quality of our days. Some folks don't relate to the discussion of hope at all, and that's OK too. 
    As you say, each person's experience is so individual. I am so glad you are finding your way to equilibrium. 
    Karen
  5. Like
    Karen_L got a reaction from tgif i guess in Everything you need to know about lung cancer but were afraid to ask, I think   
    I love that you are focusing on living! And I need to offer some caveats as you continue your lung cancer experience, perhaps for other folks who might be reading your blog than for you. (You sound like you are working your way into understanding that can sustain you and I'm glad for that.)
    I want to say that your friend's comment enters into the zone we call toxic positivity. It's often what some folks offer people with cancer when they don't know what else to say to show love or support. You're lucky to have such a stalwart friend who has given you something to hang on to that you value.  
    What I want to emphasize is that toxic positivity is also what many lung cancer folks use to beat themselves up (in the privacy of their own minds) if they have a recurrence of cancer after initial treatment.  That goes something like this: "Oh, I must not have had enough hope/eaten enough kale/taken enough vitamins/fill in the blank."
    What I've observed is that you can have all the hope in the world and lung cancer can still recur or spread or kill you. Or, you can have no hope and live for decades. You can eat a totally vegan diet and do all the other stuff you read about and have cancer recur or spread, or you can eat sugar and processed meats and live for decades. 
    Some of us find our way to hope swiftly. Others of us take a longer time to understand what hope means for us, or how different kinds of thinking can affect the quality of our days. Some folks don't relate to the discussion of hope at all, and that's OK too. 
    As you say, each person's experience is so individual. I am so glad you are finding your way to equilibrium. 
    Karen
  6. Like
    Karen_L got a reaction from Tom Galli in Everything you need to know about lung cancer but were afraid to ask, I think   
    I love that you are focusing on living! And I need to offer some caveats as you continue your lung cancer experience, perhaps for other folks who might be reading your blog than for you. (You sound like you are working your way into understanding that can sustain you and I'm glad for that.)
    I want to say that your friend's comment enters into the zone we call toxic positivity. It's often what some folks offer people with cancer when they don't know what else to say to show love or support. You're lucky to have such a stalwart friend who has given you something to hang on to that you value.  
    What I want to emphasize is that toxic positivity is also what many lung cancer folks use to beat themselves up (in the privacy of their own minds) if they have a recurrence of cancer after initial treatment.  That goes something like this: "Oh, I must not have had enough hope/eaten enough kale/taken enough vitamins/fill in the blank."
    What I've observed is that you can have all the hope in the world and lung cancer can still recur or spread or kill you. Or, you can have no hope and live for decades. You can eat a totally vegan diet and do all the other stuff you read about and have cancer recur or spread, or you can eat sugar and processed meats and live for decades. 
    Some of us find our way to hope swiftly. Others of us take a longer time to understand what hope means for us, or how different kinds of thinking can affect the quality of our days. Some folks don't relate to the discussion of hope at all, and that's OK too. 
    As you say, each person's experience is so individual. I am so glad you are finding your way to equilibrium. 
    Karen
  7. Like
    Karen_L got a reaction from Tom Galli in The Stigma   
    People just don't know. I hate that it automatically offer me the chance to act as some kind of advocate-- I don't relish that, but I do try to be open about my cancer. I always say something about how I never smoked and I consider it grossly unfair to have gotten it. I mean, truth, right? We can find our own support. It takes time, but there are big communities out there. This one, for example. And if you have had molecular testing and the testing revealed mutations, there are lots of specialized groups. Lungevity has a bunch that meet monthly via video conference, as well as other services. I hope you'll consider checking them out!
     
    K
  8. Like
    Karen_L got a reaction from Sue BB in I have lung cancer?   
    No, no-- not a broke-down body. A body that has been strong enough to bear you up-- look at what you've been able to do, even as your body has been under the burden of this terrible intruder! You are strong and courageous. Terrified and shell-shocked, yes, but also strong. You can do this.
    I've been writing about my own situation for more than 2 years. If it helps, take a look. 
    And, be sure anything you read on the web is fro a reputable source. The Lungevity info is top-notch. It will give you lots of info that can inspire some questions. 
    Writing a blog is so therapeutic. As you move through these early days, as questions arise, you will also find the forums great for addressing specific questions.  
    Welcome.
    Karen
  9. Like
    Karen_L got a reaction from BridgetO in A New Chapter   
    Dear Tom, 
    I'm so, so sorry you are suffering. I hope you will seek ideas from a palliative care person. Most important, I hope there are approaches that might bring you some relief. I wish I had possibilities to offer. 
    I'm sure it feels like some doors are closing, but I'm also sure that you will try to find others you can push open. 
    Please keep us posted.
    Karen
  10. Like
    Karen_L reacted to LilyMir in The Stigma   
    I cannot believe these ladies were so heartless, in a cancer support group no less, what an atrocious thing to do!  
    Casting blame on others gives many people a sense of power and superiority; I bet you they never blame themselves when they do something regrettable. My doctors asked me if I smoked but I believe that was part of the diagnosis process. They wanted to assess my risk and predict cancer sub type. Outside of healthy living recommendations, or smoking cessation therapy, there is no place for such discourse.
    I am afraid the stigma is very real, and even as a never smoker, I learned pretty quickly that I should not volunteer my lung cancer diagnosis info unless I have to. Heck even having told people I merely have cancer caused them to promptly stop interacting with me (parents in my kid's new school). No empathy even from educators. What a world we live in.
  11. Like
    Karen_L reacted to LouT in Hospice For Sale   
    Tom,
    Discouraging to read this.  As someone whose wife is presently in hospice it can give you chills.  In my case the care has been wonderful and the company checked out well before they were brought in (recommended by other Alzheimer's Caregivers).  The care has been excellent and support to the family the same.  I'm lucky, but I can only imagine what some families must go through with these "sham companies".  This can be the hardest period of a family's life and to learn that so many scammers and charlatans are taking advantage of it is really disheartening and it pisses me off.

    Thanks for sharing.
    Lou
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