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Curt

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  1. 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.   
  2. 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
  3. 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 😉.   
  4. 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

  5. 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 😉.   
  6. 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
  7. 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.
  8. 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.  
  9. 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!  
  10. Like
    Curt got a reaction from LouT in Lou vs. the Chest Tube   
    I made the same mistake Lou.  I was feeling good and let the pain meds run down, probably day two for me as well.  I got the same shot of Delaudid.  It’s amazing how quick that medication works.  Thank god for it.  The nurses gave me a good talking to after that and it didn’t happen again.  I stayed on the schedule the doctors ordered and any sign of pain I let the nurses know.  I found I had to take my pain meds every hour and forty five minutes instead of every two hours.  I was on opioid pain meds for about a week then started to wean off to just taking them at night to sleep and then to Tylenol.  The best thing for healing is to make sure you aren’t in pain.  Keep taking them for as long as you need them.  If you aren’t in pain you can do a lot more to help the healing along.  Getting the chest tube out will provide some relief but it will take some time for the incisions to heal.  The recovery is weeks for major recovery (back to daily life routine) and months for total (no residual affect), not days.  Be patient with it.  
  11. Like
    Curt got a reaction from LouT in Survived Pre-Op Now On To The Surgery   
    You’ve got this Lou.  
  12. Like
    Curt reacted to LouT in The day after surgery   
    Thanks for the well wishes everybody. I'm now out of ICU and could go home Sunday or Monday. I have an air leak they're watching and it's not a bad one so when it seals I'll be sprung. 
    I'll get the catheter out tonight and that will make the remainder of my stay more pleasant. I'm up and walking now and want to do a mile/day before I go.  
    I feel blessed that I had this forum and all of you to go through this with me. Thank you for everything. 
    Lou
  13. Like
    Curt got a reaction from BridgetO in The day after surgery   
    I’m glad to hear you’re doing ok.  I’m sorry to hear that it is cancer.  I guess you were expecting that but it’s still shocking to hear.  That shock still comes and goes ten weeks later for me.  The first 24 hours are tough, but you’ll likely forget the details of it as time goes on.  You’ll see improvement every day.  Getting that chest tube removed is the next milestone.  I had an air pocket in my chest that delayed mine being remove by a day or so.  I was petrified of that.  The doctors said it wouldn’t hurt and they were right.  It was more of a relief when it came out.  Walking as much as you can will help accelerate getting it out. The opioid pain meds do slow you down.  Waking and drinking a lot of water also helps with getting things moving.
     
  14. Like
    Curt reacted to Rower Michelle in The Results are in....   
    Yep, it's like the old Green acres theme song- "Spa living is the life for me!"  LOL! 
  15. Thanks
    Curt got a reaction from Rower Michelle in The Results are in....   
    Amazing!  You had me nervous for half a sentence there.   Looks like the spa treatments are working, keep them up.  
  16. Like
    Curt reacted to Rower Michelle in The Results are in....   
    Hey Everybody! 
    Yesterday when I saw the Hippie doctor at acupuncture he "leaked the radiology results".  Brain MRI is negative woo hoo,  CT Chest, STABLE, STABLE and STABLE.  He was really happy with the results. 
    So then I saw the onc and the first thing he said was that he disagreed with the radiology report.  For about ten seconds my heart just sank.  Doc said, I think your lungs look nearly normal and the tumor area looks smaller to me. He showed my the comparison CT scans going all the way back to September.  Alectinib is doing the job and his feedback thus far, is EXCELLENT response.  Whatever is left in the lung junk is probably scar tissue.  
    In words of our fearless leader Tom- I will stay the course having graduated to scans every three months.  Onward.  Jersey strong, 
    Michelle 
  17. Like
    Curt got a reaction from LouT in The day after surgery   
    I’m glad to hear you’re doing ok.  I’m sorry to hear that it is cancer.  I guess you were expecting that but it’s still shocking to hear.  That shock still comes and goes ten weeks later for me.  The first 24 hours are tough, but you’ll likely forget the details of it as time goes on.  You’ll see improvement every day.  Getting that chest tube removed is the next milestone.  I had an air pocket in my chest that delayed mine being remove by a day or so.  I was petrified of that.  The doctors said it wouldn’t hurt and they were right.  It was more of a relief when it came out.  Walking as much as you can will help accelerate getting it out. The opioid pain meds do slow you down.  Waking and drinking a lot of water also helps with getting things moving.
     
  18. Like
    Curt reacted to Deb W in Has anyone experienced this kind of reaction?   
    Thanks so much for all of your replies.  Right after my diagnosis I fell it was important  to tell my long term  clients because I was going to be out for 4 weeks.  One woman said, I'm so sorry, my mother died of lung cancer...and that was before I had surgery.  I think people do the best they can, and they don't know what to say.
    I like the "elevator" pitch idea.  I've also made it a point to refer women to the Lung Force site as well as Lungevity.  The stats for women with lung cancer are alarming...up 87% over the last 40 years.  I am still educating myself as there is so much out there.  I tell my story to close friends.  I didn't realize that Ruth Bader Ginsburg had the same diagnosis...see what I mean about not knowing.  Prior to the diagnosis it's not like I would read about lung cancer.  
    I'm preparing myself for a dinner next Saturday, and I know that people are going to ask me questions, and I really don't want to talk about it.  I just want to have a good meal, listen to great music and participate in light chit chat.  I can't bear to look at the sad faces. I never thought about how it might feel when people looked at me with pity.   I do believe as mentioned above, the people reacting very strongly are thinking if it can happen to her, it can happen to me.  That's really the point.  
    Thanks for your comments everyone...so very helpful.
  19. Like
    Curt reacted to Rower Michelle in The day after surgery   
    Great to hear from you Lou.  A little coughing tip-grab a pillow and wrap it into your belly to protect the rib cage.  One step at a time. Your surgery buddies will coach you along the road to recovery.  You’ll be back in short order! 
    My continued prayers! 
    Michelle
  20. Like
    Curt reacted to LouT in The day after surgery   
    Well, here I am one day after surgery.  Last night was eventful, but today's turning out more trouble-free. 
    They did perform the lobeecromy since  the nodule was squamos cell cancer. I'll know more about my stage and other details at my 3 week follow up visit.  
    There is pain, but it's well controlled with Tramadol and an occasional half dose of delaudid. I think the chest tube hurts now than the surgery itself. I was surprised to wake up with 4 IV's in me, but they took 2 of them out a little while ago.  I've sat up in a chair and did my first walk (which felt good to do) and while I could feel the surgery it wasn't terrible. 
    I was up most of last night so I'm a bit drowsy today. The chest tube pump fell and broke. It only took a minute or two before I felt pain in my right side. They brought in an x-ray machine and determined I was filling up with air. Luckily they got another unit, cranked it up and pretty quickly my pain stopped. Then they had to catheterize me. Apparently the anesthesia can put parts of your body to sleep for awhile.  So between those incidents, numerous checks and blood work the first night wasn't a lot of sleep. I'll get more today. They are thinking I may leave ICU and go to a surgical ward today it tomorrow. 
    Curt, you were right, I do feel better than I thought I would after the operation.  Even though I know I have a way to go I'm not suffering so much as I imagined before the surgery.
    I'll post here again when I have more to share. 
    Lou
  21. Like
    Curt reacted to LexieCat in The day after surgery   
    Sounds like everything went well!  Of course, it's preferable to wake up to find there was no cancer, but catching it early and getting it out is the next best thing.
    Glad to hear you're feeling OK.  Don't be surprised if you wind up doing a LOT of coughing--after the first few days, sore abs from coughing was the most painful part.  Keep doing your breathing exercises--the coughing is good for you and will lessen in a week or two.  
    Have they told you yet when you can go home?
  22. Like
    Curt reacted to Tom Galli in The day after surgery   
    Lou,
    You are my hero!  Posting one day after major surgery is quite a feat. 
    I had a similar chest tube “bucket” problem that caused pain. Moving from ICU to surgical ward is a big step!
    Stay the course. 
    Tom
  23. Like
    Curt got a reaction from Tom Galli in Ugh Scan Time   
    I got different sizes on all of my scans, they were all up or down a mm.  Just breathing in more or less when you hold your breath for the scan can change the size.  It can also change the way it looks in some ways.  I don’t know if you’ve seen one but it’s unbelievable to me that they can tell anything from them.  I really hope their are better diagnostic tools in the future.  Prescreening is great, but the tools to diagnose need to be better.  If you are uncomfortable with your doctor’s recommendation you can get a second opinion.  I did.  It turned out to be the same recommendation from both.  
  24. Like
    Curt reacted to Rower Michelle in Second Annual ALK Conference in Atlanta & T-Shirt Fundraiser   
    To All My ALK Family that are not on Facebook:
    https://www.eventbrite.com/e/alk-positive-summit-2019-registration-61132723622 
    My peer mentor is on Facebook and keeps me informed of all the ALK initiatives.  In the above link, is the registration for the second annual ALK FUN Summit in Atlanta from August 2-4th in Atlanta.  It's a free conference that I wanted to ensure you all had an opportunity to participate.  (All ALKs and caregivers are welcome). 
    If you are unable to attend, please considering ordering your ALKWEAR- THERE ARE ONLY FOUR DAYS LEFT TO ORDER. 
    https://www.customink.com/fundraising/alk-positive?pc=WELC-170506&utm_campaign=fr_sup_welcome&utm_source=fr_supporter_welcome&utm_medium=email&utm_content=campaign
    So far, there's almost 40 people registered!  I hope to be able to meet some of my fellow ALKs!  Please come or buy some ALKWEAR. 
    Michelle 
     
  25. Like
    Curt reacted to BridgetO in Has anyone experienced this kind of reaction?   
    I like Michelle's idea of an elevator speech.  I can  imagine her as a cheerleader for lung cancer awareness. Go Michelle!
    I've been generally open about my cancer diagnoses, all 3 of them. I've also been pretty upbeat when talking to others about cancer, and i don't avoid the word. I'm acutely concious of the stigma associated  with some diseases, since I've  had a number of friends die of AIDS. Lung cancer has some of the same kind of stigma as HIV and I think a way to diminish this is to banish it for myself by talking about it if it was just any other illness.. Yep, I had surgery, it was fairly easy, and I'm fine now!  I do mention that I was fortunate that my cancer was discovered early and so I don't need other treatment. Just like my spouse might talk about her gall bladder surgery. I save any moaning and groaning and feeling sorry for myself  for people I'm closest to and for this forum  (lucky you!).  I generally answer questions anybody has (unless they are TOO personal). The question "did you smoke?" is problematic. I didn't, but I'm uncomfortable with the question because it tends to divide us into "the unfortunate- it's not fair!" and the "it's your own fault".  It's important for people to know that anybody who has lungs can get lung cancer and  we're all in this together.. Nobody choses this disease and nobody deserves to get it, whether they smoked, breathed asbestos, or lived in a place with high radon.
    So thats how I deal with it, and I don't get a lot of those " death sentence "  pity type looks. Everybody  has to deal with this stuff in the way they're comfortable with. I know, as to lung cancer, that it may be easier for me because my cancer was diagnosed early and so was relatively  easy to treat. For my gynecologic cancer, that wasn't so. It was advanced, my surgery was big and had long recovery, followed by radiation, chemo, and  treatment side effects, some of which are permanent. My approach with others was generally the same as with the lung cancer, and I didn't get many sad, death sentence looks then either. I did get "you' re so brave" to which I generally responded with something like " I'm not brave, I just dd what I needed to do to save my livfe and now I'm living my life." 
    So Deb, do what your comfortable with. Except for close family and others you depend on for support, it's really none of their business and what you chose to tell them is up to you!   Hang in there and live the life you want. 
    Bridget O
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