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Irwin1

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  1. Like
    Irwin1 got a reaction from LouT in Introduction   
    I haven't received a definitive diagnosis yet. I just have the CT scan that shows a mass > 4 cm alongside of a positive PET scan with cells lighting up in the mass along with a lymphnode. I don't know the rules invoking God so I won't name him. 
        The truth is that I have been prepared for this in the past three years. I have had neurological problems and bad diagnoses. I have had neurologists give serious disease to my face. I have had a lot of schooling in diagnosing. But I was blind when it came to neurology I was blind. Now I have a gift in the form of a sense of humor. I went to the first neurologist and I could tell that he was trying to install fear in me. Just by observing me for15 mins he looked at me and said ' I have a gut feeling that you have Parkinson's Disease. So I looked at him and said ' Thank God I thought it was something serious 😂
       Then after schooling myself from Doctor Google I saw clearly that I didn't have it. I even went to a.P D forum and they said that it didn't sound like I had it. So I went to a second neurologist and in less than 2 minutes he said that I didn't have PD. But this neurologist gave me 2 diagnoses which I studied and found out that those diagnoses were ruled out because they were autoimmune diseases and prior lab tests showed no autoimmune diseases. So I confronted him with that..And at the end he was honest with me telling me that he didn't know what I had..He and my PCP told me to go to Cleaveland Clinic. But my insurance was very weak with them. They wanted $10k just to talk to them and there was no way I was able to afford it so I decided to just treat the symptoms which is what would have happened even if I was diagnosed at that point.
        Slowly but surely I got better. So the point is that I have had experience with doctors doctors giving me bad diagnosis. The only thing is LC is about 50 times more scarier. And there is no Dr Google to help me out. Dr Google makes things worse.
       I also developed an addiction to Xanax after 35 years and I knew that I had to quit since the whole family of benzodiazipes are now considered bad medications. So I was deeply rooted in an online forum and was on my way cutting down..So my point is that I am familiar with the encouragement and the need to receive support from others. I also am aware of the bonding and love that takes place in forums. I know how to love and also to receive love. The gift that God gave me is the ability is how to encourage. 
        So depending on my definitive diagnosis as soon as I settle down I am going to be participating.
       I also know that with a bad diagnosis my life is forever changed. 
      I think that I mentioned the loss of my 13 year old Golden retriever when I returned from the hospital. When I recovered from the pneumonia at home and got on my Archie Bunker recliner to feel some sort of normalcy it didn't happen. I had my lung mass and Gabriella was gone.
      So there is a spiritual song that I liked to listen to because I knew some day that I would need it..And the lyrics go like this.
       Yesterday is a closing door. You don't live there anymore. Say goodbye to where you've been. And tell your heart to beat again.
         I think that says it all
                      Irwin
     
  2. Like
    Irwin1 got a reaction from Curt in Lung Cancer & OCD   
    I have OCD and waiting for my diagnosis. What I find that helps is distraction ,distraction, distraction. You must keep your mind busy and not have time to think about the cancer.
         The hard part is finding what distracts you..
        I have become a sports fanatic. I bought the book Anti Cancer Living. And other small things. 
        But the secret is to be a fantastic at something other than thinking about your condition.
         I am not a psychologist. I am only tell you what has helped me!
                 Irwin
  3. Thanks
    Irwin1 reacted to Robert Macaulay in Introduction   
    Hi Irwin
    The new norm of cancer patient is a new life of appointments and if you stay healthy and walk those dogs in your new regime everyday during your treatment .It works for me so far.
  4. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    There ya go!  Celebrate those no symptoms days. Go out and do something fun today- just because you can. 
    Once your treatment gets underway, there’s a lot of resources available to us- I’m mastering self care with massage, acupuncture, Tai Chi,  & Yoga.  Yesterday my doubles partners dragged me out to the lake for a practice row. Wasn’t pretty but hey gotta start somewhere.  
    Ride the good day and stay off the internet! 
    Michelle
  5. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    When your ready- you can check out the self healing meditation CDs from Candace Pert and Bellaruth Naperstack.  I find them helpful visualization tools for my mind to heal the body.  
    I had to buy a good old fashion CD player/portable boom box however it’s proved to be a solid investment.  
    Anti Cancer Living covers a lot of the mind body medicine.  
    Hope you had a better day today! Remember the sun always shines after the rainstorm. 
    Michelle
  6. Thanks
    Irwin1 reacted to LouT in Introduction   
    Irwin,
    You've already gotten some great advice, hope and input from the rest of my lung family here and I wanted to just add my experience to what you've received so far.  When I was first aware that this was going to be lung cancer (although the final diagnosis would come in the operating room) I immediately went to a very dark place and only thought of my death.  I had seen my mother die of lung cancer and was with her on her last day so I already knew what I was in for.  After all, not much could have changed in the past 35 years, right?
    Well, of course a lot has changed.  I took the advice of others here and kept away from Google and even WebMD (my normally trusted source), but I listened to my Pulmonologist and the Thoracic Surgeon.  They kept talking to me about the process, prognosis and none of what they said agreed with the picture I had painted in my own head.  So, I was stuck between hope and total desperation.  Then I got a private message from a member sharing his fear and how nothing turned out the way he imagined it would be (he, like me, had a lobectomy).  I must have read that message 10 times and went back to it a few more the next day.  After that I decided to listen to my doctors (and my family here) and believe that the plan they laid out for me was going to have a good outcome and, to my own surprise, it happened just that way.
    Yes, they biopsied me on the operating table and it was lung cancer; yes I lost a part of my lung; yes there is always a chance of recurrence, but I don't read Google or any other stats.  I go by what my doctors tell me and by the stories that I've seen shared here that were inspiring and hopeful in circumstances much more dire than mine.
    "Diagnosis time" stinks...you wait and hope and fear and wait some more.  But you've been given time, hours, days despite the fear you need to fill that time with loved ones, funny shows (for me it was Seinfeld and the old Honeymooners series) and connect (here and in your own neighborhood).  Fight despair with the same energy you'll learn to fight this disease.  You may not always feel it, but you have this strength in you.  You have so many people (including many here now) praying for you that you need to let those prayers lift your spirit.  I also love Michelle's mantra...find the one that means something and does it for you.  In my case there were too many carnal verbs in mine to share it here.
    Cancer stinks and lung cancer stinks even more, but you have so many people (your medical team, family, friends, prayer partners and now us) on your side so you are not alone.
    Lou
  7. Like
    Irwin1 got a reaction from Curt in Introduction   
    Got my copy of Anti Cancer Living. Just having something to read and do has taken some of the helplessness away.
      I am also using coping skills that I have used during my life. While I am symptom free I am keeping my mind positive and content with the health I have now. I believe but don't have any proof that living and thinking like this releases healing mechanisms even unknown of now similar how the brain releases endorphins during exercising. 
      I just have this strong feeling that being at peace and living in the now is healing my body. 
       But I still have no proof of it being a reality
  8. Like
    Irwin1 got a reaction from Curt in Introduction   
    Michelle you sound exactly like my wife Lol. 
       It's a new day. I am adjusting to the harsh reality of my new situation which is LC. 
       But I will say that I have everything I need to battle this illness. I have a great wife. I have an air conditioned roof over my head in Florida..A couple of dogs.
       And I have absolutely no symptoms from this 5-7cm mass that has taken up a home on my lung. If I wasn't told it was there I wouldn't know it. 
       Having said that I am going to stop studying lung cancer online and enjoy the fact that I feel absolutely healthy today. Tommorow I don't know about. But today I feel healthy.
          Oh wait. If I am going to be part of the group here I have to grow up. 
          I am currently NED
        
     
     
  9. Like
    Irwin1 got a reaction from Tom Galli in Introduction   
    Michelle you sound exactly like my wife Lol. 
       It's a new day. I am adjusting to the harsh reality of my new situation which is LC. 
       But I will say that I have everything I need to battle this illness. I have a great wife. I have an air conditioned roof over my head in Florida..A couple of dogs.
       And I have absolutely no symptoms from this 5-7cm mass that has taken up a home on my lung. If I wasn't told it was there I wouldn't know it. 
       Having said that I am going to stop studying lung cancer online and enjoy the fact that I feel absolutely healthy today. Tommorow I don't know about. But today I feel healthy.
          Oh wait. If I am going to be part of the group here I have to grow up. 
          I am currently NED
        
     
     
  10. Like
    Irwin1 got a reaction from Rower Michelle in Introduction   
    Got my copy of Anti Cancer Living. Just having something to read and do has taken some of the helplessness away.
      I am also using coping skills that I have used during my life. While I am symptom free I am keeping my mind positive and content with the health I have now. I believe but don't have any proof that living and thinking like this releases healing mechanisms even unknown of now similar how the brain releases endorphins during exercising. 
      I just have this strong feeling that being at peace and living in the now is healing my body. 
       But I still have no proof of it being a reality
  11. Like
    Irwin1 got a reaction from BridgetO in Introduction   
    Got my copy of Anti Cancer Living. Just having something to read and do has taken some of the helplessness away.
      I am also using coping skills that I have used during my life. While I am symptom free I am keeping my mind positive and content with the health I have now. I believe but don't have any proof that living and thinking like this releases healing mechanisms even unknown of now similar how the brain releases endorphins during exercising. 
      I just have this strong feeling that being at peace and living in the now is healing my body. 
       But I still have no proof of it being a reality
  12. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    Yes.  That’s the book. It’s a great read. 
  13. Thanks
    Irwin1 reacted to Rower Michelle in Suppliment List   
    Hi Irwin-
    I take supplements that were recommended by an Integrative Oncologist to optimize my treatment plan. I take six pills a day (called targeted therapy) to treat ALK Positive NSCLC.  ALK is a rare NSCLC gene mutation.  
    I think you will probably want to find a good Integrative Oncologist (recommended by your oncologist) to co-ordinate the treatment plan. 
    Heres what I’m taking:
    Host Defense Mushrooms (Turkey Tail, Stamets 7 & Reishi)
    Curcumin
    Fish Oil
    Wellavate’s Inflammatone 
    Alpha Lipoic Acid
    Vitamin D 
    Low Dose Naltrexone 
     
    I also use acupuncture weekly to assist with fatigue.  
    Don’t be discouraged if your oncologist isn’t gung-ho on supplements. Most doctors really don’t know much about them.  I had to really push for this to referral. Fortunately I am treated at a major academic center that had an Integrative Oncology Program. You will need to be cautious about any miracle cures promoted or people who are outright quacks.  
      This stuff isn’t cheap however priceless in my opinion as my Stage IV disease is stable. My oncologist is befuddled by the excellent response; isn’t too interested in the details and keeps telling me to keep doing whatever I’m doing. 
    Michelle
  14. Thanks
    Irwin1 reacted to Curt in Introduction   
    Hi Irwin.  You’ve gotten some great advice from Michelle and an excellent dose of hope from Donna.  The time between first discovering something out of the ordinary on your lung and an actual diagnosis can be agonizing.  The uncertainty of what’s next was difficult for me.  Googling made it worse.  This forum definitely  helped calm my nerves.  I realized there were plenty of people going through what I was or worse.  Their stories and strength provided more help than anything else I found on the Internet.  It’s a tough road but it is one that is unfortunately well travelled by others.  Hang in there.  Once you have a diagnosis and treatment plan there will be an opportunity to get back to living life.  This doesn’t have to be all consuming if you don’t let it. 
  15. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    Irwin-
    I have a commercial health Insurance Plan (I’m 51) so I’m not very familiar with the MA plans.  
    What I can tell you is the hospital pharmacy team will do everything they can to ensure the proposed treatment plan (chemo, immunotherapy or targeted therapy) doesn’t break the bank.  One of my Medicare LC friends got a grant for Keytruda so there was zero out of pocket. 
    You’ll be meeting with a dizzying number of people in the next few weeks, the finance team will be very important.  They have all this stuff down cold.  
    Take this one step at a time, it’s so easy to get overwhelmed at this point.  Manage what you need to day by day or hour by hour if necessary. Try not to get ahead of yourself by letting the worry monkeys take over.  You can do this!
    Michelle
     
  16. Thanks
    Irwin1 reacted to Rower Michelle in Introduction   
    Hi Irwin- 
    While you’re in this waiting phase you might want to check  out the Lung Cancer Living Room on YouTube- by the Go2Foundation (formerly the Bonnie J Addario Foundation).  The ALA is a total waste of time.  They’re two hours of very informative and inspiring emerging technologies. (Stuff so new it’s not on the internet)
    You may also want to pick up a copy of MD Anderson's “Anti Cancer Living”.  It’s the new LC survival guide with lots of great strategies on how to navigate all of this.  
    You are going to want to find a doctor that specializes in your cancer once it’s been specified. For me, personalities or bed side manner is irrelevant. I’ve got a super smart doc- not much on the interpersonal skills but I’m training him and he’s getting used to me. (Check out Tom Brokaw’s interview about surviving cancer entitled You Don’t Have to Like Your Doctor).
    While you’re at it take a look at Stephen J Gould’s Essay- The Median Isn’t the Message. This essay pulled me out of a black hole 
    Post whenever you want and we will find you on this forum.  We will help you prepare for every visit, test and result. There’s a lot of experience here to draw from. No need to reinvent the wheel. 
    Keep us posted- there are good days coming- just hold on for now.  
    Michelle
    PS I also worked in hem/onc in the early 90s. All I can say is a lot has changed for the better.  
  17. Like
    Irwin1 got a reaction from Curt in Introduction   
    Thank you so much Curt. 
          I was doing so well emotionally until I crashed today after going to the American Lung Assoc. It sucked out most of my hope. 
     I mentioned that I was in hematology. Well 2 of those years were spent working under 2 oncologists in the mid 90's. Those memories haven't been helpful to me either. But my awesome wife reminded me of how long ago that was. 
       I can't tell you how much my nerves have been calmed here. Thank you for your compassion for the new comers like me. 
           Now it's up to me to put the advice that I have received here into practice. And the most important advice I received here is to have patience. The dose of hope I received was priceless!!
     
  18. Like
    Irwin1 got a reaction from Curt in Introduction   
    Wow. You just being here gives me hope. I went to learn about my problems at the American Lung Assoc and their info was pretty bleak. You shouldn't be here according to them. You should have been gone a long long time ago.
        This may sound strange but in more than one way, thanks for being here LoL
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