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Curt

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  1. Like
    Curt reacted to Susan Cornett in Newby Introduction   
    Hi, Brian. I'm glad you found us. I know this stage is overwhelming and your head is spinning. Trust me - I've been there. This community and this site will help you with information. The first thing I will tell you is to stay away from the statistics. Second, hang in there. Whatever your diagnosis or treatment plan, someone here has been down that same path. 
    Let us know how we can support you.
  2. Like
    Curt got a reaction from Brian1969 in Newby Introduction   
    Hi Brian.  I’m sorry to hear about your struggles but glad you found this site.  The initial diagnostics and testing (and inevitable waiting) is really tough.  Hang in there.  You’ll find plenty of support here if you need it.  
  3. Like
    Curt reacted to LexieCat in Tumor not gone after Chemo/Radiation   
    Hi there, and welcome.
    I'm sorry to hear about your brother's diagnosis.  There's really no way to know how long someone with advanced lung cancer may live.  We have quite a few people here on the forums who are doing well several years after diagnosis with advanced cancers.  What you read in the survival statistics is pretty scary, but it's important to know a couple of things.  First, the stats represent AVERAGES.  So many people survive for much longer than the average would suggest.  Of course, some people survive for shorter periods of time, too, but a lot depends on the exact type of lung cancer, the person's age and health (other than the cancer), and a lot of other variables that have yet to be understood.  The other thing to realize is that the stats focus on a five-year survival period, meaning the stats apply to people diagnosed more than five years ago.  There have been many advances in the treatment of lung cancer in the past few years, and new discoveries are leading to new, better treatments all the time.  So there IS cause for hope.
    Glad you found us--this is a great place for information and support.
  4. Like
    Curt got a reaction from CSmith in Hello from a newcomer!   
    Hey Craig.  Telling people about this diagnosis is tough.  I’ve had to tell family, friends, employees, vendors and customers over the last two months.  I share what I’m comfortable with.  I use it as an opportunity to raise awareness of the disease, there is so little understanding of it with a very heavy bias because of the smoking aspect.  I try to focus on the positive outcomes and treatment advancement when discussing it.  I will say it is helpful to try and  find someone “else” you can have the less positive “real” conversations with.  I found that while I as trying to put on a positive image I wasn’t letting all the negative stuff out.  On the outside I was positive but on the inside was feeling pretty negative at times.  I had to find a way to let the negative feelings out to make room for the positive ones.  
  5. Like
    Curt got a reaction from BridgetO in Scared of upcoming lung surgery, especially aftermath   
    It’s a firm memory foam pillow with a gradual elevation.  Here is a link https://images.app.goo.gl/AftAuuPLvSrxxBSv6.  I am a side/stomach sleeper but found myself sleeping on my back on the wedge pillow with softer pillows on my right side. I’d describe it as sleeping on my back but leaning to the left.  The pain medication def helps.  It’s amazing how well they can manage your pain.  I had two small incisions under my right arm.  One up by my armpit and a second one by my ribs.  Those are the two major areas for VATs.  I had a third incision on right side closest to my back, that was the least painful of all three.  
  6. Like
    Curt reacted to Irka in Scared of upcoming lung surgery, especially aftermath   
    Thanks, Curt, for your heartening response.  Yes, I have seen the wedge pillows advertised before & even considered getting one to help acid-reflux.  The latter hasn't bothered me too much, so I passed.  It's very encouraging to learn of your successful experience with VATs.  I'll be having the robotic-assisted version called "RATs."  But I don't want to use that acronym as I have a phobic fear of rats!
    Bottom line for me is that I have to steel myself & go through the step-by-step journey of treatment.
    I sincerely hope you continue to do well.
    Irka
  7. Like
    Curt reacted to Deb W in Scared of upcoming lung surgery, especially aftermath   
    Hi Irka,
    I am 6 weeks post VATS robotic surgery  - removed 1/3 of left upper lobe and a small resection on the lower left lobe.    I actually played a little tennis yesterday...3 weeks weeks ago I would have never believed this  possible.  It  is remarkable how fast the body can heal.    I agree with Curt, Lexie and Roz and they've been so helpful to me during this journey.
    Best,
    Debbie
     
     
     
     
  8. Like
    Curt got a reaction from LexieCat in Scared of upcoming lung surgery, especially aftermath   
    It’s a firm memory foam pillow with a gradual elevation.  Here is a link https://images.app.goo.gl/AftAuuPLvSrxxBSv6.  I am a side/stomach sleeper but found myself sleeping on my back on the wedge pillow with softer pillows on my right side. I’d describe it as sleeping on my back but leaning to the left.  The pain medication def helps.  It’s amazing how well they can manage your pain.  I had two small incisions under my right arm.  One up by my armpit and a second one by my ribs.  Those are the two major areas for VATs.  I had a third incision on right side closest to my back, that was the least painful of all three.  
  9. Like
    Curt reacted to LouT in Discharged Today   
    Hi everybody
    Just to let you know I was discharged today. I'm super happy and I'm feeling pretty good. I'll definitely be using a lot of the tips and hints that you've all sent me. I thank you all for the support going through this and I look forward to helping someone else come through this very serious type of operation in the future.
    Lou
  10. Like
    Curt got a reaction from LouT in Discharged Today   
    Good stuff Lou.  There’s no place like home.  
  11. Like
    Curt got a reaction from Rower Michelle in Hello from a newcomer!   
    Hey Craig.  Telling people about this diagnosis is tough.  I’ve had to tell family, friends, employees, vendors and customers over the last two months.  I share what I’m comfortable with.  I use it as an opportunity to raise awareness of the disease, there is so little understanding of it with a very heavy bias because of the smoking aspect.  I try to focus on the positive outcomes and treatment advancement when discussing it.  I will say it is helpful to try and  find someone “else” you can have the less positive “real” conversations with.  I found that while I as trying to put on a positive image I wasn’t letting all the negative stuff out.  On the outside I was positive but on the inside was feeling pretty negative at times.  I had to find a way to let the negative feelings out to make room for the positive ones.  
  12. Like
    Curt reacted to Rower Michelle in Hello from a newcomer!   
    Hi Craig, 
    Great to hear from you!  I appreciate the additional reading material.  We need all the inspiration we can get to fight this ALK monster!  You are in the process of transitioning to FULL SURVIVOR mode.  It's empowering.  Every once in a while the worry monkeys will hit out of nowhere.  This seems to happen to most of us. My doc believes because the Alectinib passes the blood brain barrier, our ability to process information and the "coping" section of our brains gets somehow impacted.  The key is to learn how to "ride" the day out.  The anxiety will pass.  
    Fortunately, I had already filed for disability when I had pneumonitis and plural effusion so I didn't have face to face meetings with my customers- just the sad phone calls.  It's like PTSD, relieving the trauma all over again.  I developed about a 90 second elevator pitch that kept my story pretty succinct and ended on a hopeful note and some stats about LC under funding.  I leave out the Stage IV part because it just freaks people out.  
    The fatigue is part of the ongoing side effect so learning how to chunk things down is helpful and takes a little while to figure it out.  I get acupuncture once a week which helps. I totally get the aches and pains.  My onc has a motto of "ABC" alway bet on cancer.  I landed in the ED for a simple fever of unknown origin. Turned out to be nothing but in our case could have been a pulmonary embolism.   I tell my onc about everything-almost to the point I feel like a hypochondriac.  Better to over report than miss something.  
    The trips to the clinic will get spaced out over time and your new normal will soon be on the horizon.  I hope you are able to join us for the ALK Summit in Atlanta.  I think it will be inspiring to meet our peers, some of whom are in the ten plus year club.   
    Glad to hear that you feeling better.  I say that this journey is like the Tom Petty song,  We're learning to fly but we ain't got wings.  Each day no matter how fatigued I am, I choose to FLY.  
    Have a great week.  
    Michelle 
  13. Like
    Curt reacted to LexieCat in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Hi, there--glad to hear things are moving along!  The surgery itself is nothing to be terrified about.  My C-section was more painful and took longer to recover from.  I notice zero effect on my breathing with my upper left lobe removed.  I feel a tiny twinge if I have a sharp intake of breath (e.g., yawning or sneezing), but it doesn't hurt--it's just a twinge.  
    Are you getting settled from the move?
    I'd suggest you do whatever physical stuff may still need to be done (unpacking, rearranging, etc.), just because it will be 3-4 weeks before you feel like doing a lot of physical activity.  But I was taking mile-long walks only a couple of weeks after my surgery.  Do your breathing exercises after surgery--that will help speed your recovery.
    Seriously--try not to worry.  It's not a difficult surgery from the patient point of view.
  14. Like
    Curt reacted to BridgetO in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Hi Irka, I had a lower right lobectomy about 2-1/2 years ago. The also took out a bunch of mediastinal (center of the chest) lymph nodes. It was by VATS (video assisted). The surgery went smoothly and was fairly easy, as surgeries go anyway-- any general anesthesia surgery is serious. My recovery was pretty fast, too. The robotic should be as easy on you as the VATS. Open surgery is  harder and has a longer recovery time, ususally. If you have any questions,  My number one recommendation is to get a foam wedge pillow. After surgery you'll be more comvfortable and breathe easier with your upper body (not just head) elevated. I tried to acheive this with other pillows but only ended up with a stiff neck. The wedge was a godsend!
  15. Like
    Curt reacted to LouT in Lou vs. the Chest Tube   
    Thanks for all the great info everybody.  You can trust that I'm taking your experiences and counsel seriously.
    As of today my air leak has closed, my systems are working and I'm moving around well. I hoped all that would have me going home tomorrow but my chest wounds is still putting out a lot of fluids and the doctor wants that to go down before I can go home.  They've also moved me from Tramadol and Delaudid to Tramadol and Oxycodone. The pain isn't as relieved with the oral meds but I've been told that once the chest tube comes out they will be more than adequate. So I'm doing the walks, spirometer, stretches and everything else they ask and I'm ready to go home. It could happen tomorrow or Tuesday and I'll update here once I know. 
    Thanks again for the great input. 
    Lou
  16. Like
    Curt got a reaction from LouT in Lou vs. the Chest Tube   
    You have to do what your body can tolerate.  Pushing through the pain is NOT something you should do, just do what you can tolerate without being in pain.  
    I can’t believe I forgot to mention the sleeping part.  Hospitals are the worst place for sleep.  They are always poking at you and they are noisy.  I had a pair of noise cancelling headphones and would play nature sounds all day and night.  I used them even when I got home to relax (nature sounds) and to motivate me to exercise (Metallica).  They were a god sent.  I’m actually planning on donating some to the hospital where I had surgery.  I really do believe they helped me with my recovery.  I was much more relaxed when they were on, which was almost all the time.  Even just the white noise cancelling sound soothed me.
    Some other tips for sleeping.  You are going to want to be propped up at home when sleeping.  Either a wedge pillow or a firm couch cushion under softer pillows should do do the trick.  Also put a pillow along your right side that you can lean against and your arm can rest on.  If your incisions are on your right side you’ll likely sleep on your back but leaning towards your left.  You may also want a smaller pillow to squeeze and keep your arm elevated off your incisions.  I used that same smaller pillow to walk around.  It kept my arm from leaning on the incisions.   I slept a LOT when I got home.  I’ve never felt tired like that before.  The exhaustion lasted about two weeks.  I would wake up, eat breakfast, walk around my house, sit in a chair, then take a nap.  Wake up, eat lunch, walk around my house, take a shower, then take a nap.  I’ve never been a day napper but I was taking a lot of them after surgery.  I think it was part physical and part psychological.  It’s a lot to handle in both regards.  It gets better.  
  17. Like
    Curt got a reaction from Rower Michelle in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Irka I’m a little over 2 month post upper right lobe lobectomy.  It was the same course for me.  Wedge resection and if it was cancer proceed to the full lobectomy.  I was “poop” scared as well. I would probably add a few more superlatives in there to better describe how scared I was.  It was not as bad as I feared.  It is different for everyone but I found it it manageable and it can be a very affective treatment.  I know it’s hard to find things to be thankful for in this, but having the option to have surgery as a treatment is a really positive thing.  @LouT has very recently had surgery.  If you check his profile you can see some of his posts on it.  @LexieCat has also had surgery.  There are others who will probably also share.  Ask whatever questions you have.  We’ll do our best to get you through it.   
  18. Like
    Curt reacted to Rower Michelle in Session at Ann B. Barshinger Cancer Institute, Lancaster PA   
    Hi Irene 
    Thanks for the update. On the grand scheme of things all seem to be moving in the right direction. The Brain MRI is excellent news!   You will have a number of surgery buddies on this forum to coach you through this time & all your friends here to support you. 
    Curt & Lou just had similar procedures, doing very well post op.  
    Keep us posted and hang in there.  Hope you love your new home & are getting more settled in. 
    Michelle
  19. Haha
    Curt got a reaction from MBinOregon in Get Ready, Set, Row   
    Awesome.  I don’t see any fishing pole holders or room for the coolers on that boat.  Where do you put the beer and fish you catch 😉.   
  20. Like
    Curt reacted to Rower Michelle in Get Ready, Set, Row   
    Hi Guys-
    Doc said I could try getting back in the boat.  So maiden voyage on Saturday with my paddle partner.  Wasn’t pretty but it’s a start! That’s me in the red hat!  Patience, Persistence & Perseverance!  
    Michelle

  21. Haha
    Curt got a reaction from Rower Michelle in Get Ready, Set, Row   
    Awesome.  I don’t see any fishing pole holders or room for the coolers on that boat.  Where do you put the beer and fish you catch 😉.   
  22. Like
    Curt reacted to Tom Galli in Lou vs. the Chest Tube   
    Lou,
    Good lesson learned. 
    Here are several I learned in my post-op experience:
    ...expect abdominal muscle cramps. They hurt and really amp incision pain. Push fluid intake, stretching and hot showers may reduce frequency. 
    ...sleep could be difficult. As for RX for sleep medication before discharge. Two Benadryl at night are a good substitute. 
    ...constipation is a pain. Take laxatives to eliminate. 
    Stay the course. 
    Tom
  23. Like
    Curt reacted to Susan Cornett in Lou vs. the Chest Tube   
    Lou,
    Sounds like you definitely learned the hard way about pain meds. My parents were here when I had my surgery and my dad preached to me about staying ahead of the pain so I took those meds religiously.  Just a quick note about the spasms - I also had them immediately following surgery. I continued to have them for almost three months post-op so surgeon gave me meds to help. 
    I hear you about sleep. I was in the hospital from Monday through Saturday. Towards the end of the week, my surgeon gave me "sleeping privileges" which meant no vitals or other nonsense between 10 pm and 6 am. 
    Keep walking, take those meds, and keep us posted.
  24. Like
    Curt got a reaction from Tom Galli in Lou vs. the Chest Tube   
    You have to do what your body can tolerate.  Pushing through the pain is NOT something you should do, just do what you can tolerate without being in pain.  
    I can’t believe I forgot to mention the sleeping part.  Hospitals are the worst place for sleep.  They are always poking at you and they are noisy.  I had a pair of noise cancelling headphones and would play nature sounds all day and night.  I used them even when I got home to relax (nature sounds) and to motivate me to exercise (Metallica).  They were a god sent.  I’m actually planning on donating some to the hospital where I had surgery.  I really do believe they helped me with my recovery.  I was much more relaxed when they were on, which was almost all the time.  Even just the white noise cancelling sound soothed me.
    Some other tips for sleeping.  You are going to want to be propped up at home when sleeping.  Either a wedge pillow or a firm couch cushion under softer pillows should do do the trick.  Also put a pillow along your right side that you can lean against and your arm can rest on.  If your incisions are on your right side you’ll likely sleep on your back but leaning towards your left.  You may also want a smaller pillow to squeeze and keep your arm elevated off your incisions.  I used that same smaller pillow to walk around.  It kept my arm from leaning on the incisions.   I slept a LOT when I got home.  I’ve never felt tired like that before.  The exhaustion lasted about two weeks.  I would wake up, eat breakfast, walk around my house, sit in a chair, then take a nap.  Wake up, eat lunch, walk around my house, take a shower, then take a nap.  I’ve never been a day napper but I was taking a lot of them after surgery.  I think it was part physical and part psychological.  It’s a lot to handle in both regards.  It gets better.  
  25. Like
    Curt reacted to Rower Michelle in Lou vs. the Chest Tube   
    I’m with Bridget on this one.  Chest tube may have gotten the first down however Lou you will have the game winning touchdown!  Sinara to that tube!  
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