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Curt

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  1. Like
    Curt got a reaction from ColleenRae in Stable!   
    I’m so happy to hear you are stable Michelle.  I’ve gained about ten pounds since surgery last February.  I believe that has as much to do with the emotional side as the the physical.   I’m embarrassed to say that the surgery hasn’t motivated me to lose the weight as much as an upcoming trip to Hawaii has. The trip is pretty close to my one year anniversary.  That anniversary is also motivating me to focus back on my overall health and well being.  It’s a constant battle.  
     
    Have fun in your trip.
  2. Like
    Curt got a reaction from TJM in Carona   
    I was in the same boat Tom.  I never liked taking medicine and never got the flu shot.  I viewed colds as something you should just fight off.  I’ve come to appreciate that I’ve “challenged” my body enough this last year and take the help where I can get it now.  
  3. Like
    Curt reacted to BridgetO in Less than 48 hours till my life changes   
    You'll be fine! You'll be surprised how fine you are in a couple of weeks, maybe in a couple of days. I had a surgery for a previous non-lung cancer that was a fairly long and extensive surgery. After that one I groggily came to in recovery, not making a whole lot of sense, and I don't think I made much sense for a several days since I was full of morphine. My wife expected me to be like that after the lung cancer surgery, and she was really surprised that I woke up chipper and making sense, or at least as much sense as I usually make. I was walking around the hospital ward the same day. A couple of days later I was walking around my neighborhood with my chest tube and drain bag covered by  a big raincoat. Like Curt, I can still do what I did before surgery. Dr Tse told me I probably wouldn't notice any difference unless I was planning to run a marathon and he was right. I wasn't running any marathons before surgery either. Walking a 5K is about my limit and i can still do that and I'm 74. 
  4. Like
    Curt reacted to Tom Galli in Less than 48 hours till my life changes   
    Tom,
    Go through your wallet and remove everything but your DR license and medical ID cards. 
    Wear loafer style shoes. Moccasins are ideal. Slip-on beats bend down and tie every time.
    Wear clothes that are easy to get into. You’ll have sutures and movement to put on clothes should be minimum. I wore athletic pants and a zipper hoodie. 
    Consider sitting in the back seat on the way home. Someone will need to buckle your seat belt and in most cars, the backseat belt is more accessible than the front. Choose your seat so the upper belt does not cross your shoulder near your incisions. 
    Stay the course. 
    Tom
  5. Sad
    Curt reacted to Moonbeam in where we are now..long and overdue   
    I never thought I would be writing this post to you all...my husband passed away on his birthday, Jan 24. To say I’m devastated and shocked is an understatement. My heart breaks. Even more “surreal” is he passed the exact same time he was born!!! 🤦🏼‍♀️ Not sure what that means but we all (me, our children and his mom and sister are speechless) 
    Through tears and reflection,  I’ve learned more about this man I loved completely - a simple (is it that simple)blood test showed (arterial blood gas) that his pain and the anxiety he dealt with, was due partly to the lack of oxygen and CO2 that was or is responsible for his lung to function. Him to function. On Thursday evening when I brought him to the ER, he had, after several tests and scans,  they said he had aspirated and had pneumonia. I won’t go into details but I’m beyond devastated and I miss him so much. Wasn’t the deal we had.  
    I am forever grateful for this group and want to continue to be a force in everyone’s battle with lung cancer. I’m envious of those that continue to battle this insidious disease and I will always be your number one cheerleader. I’m soooo proud of my husband and the strength and courage he showed all the way to the end! 
     
    I love him sooooo and will miss him and us every single day! 
    xx
    Moonbeam
  6. Like
    Curt got a reaction from BridgetO in Less than 48 hours till my life changes   
    Tom I felt much the same.  The anxiety set in on my way to the hospital and escalated.  They cave me the choice to walk to the operating room or be wheeled in.  I opted to walk.  It was a long, scary walk.  I was really afraid that my life would be completely different after surgery.  The surgery hasn’t  prevented me from doing anything I did before surgery.  It won’t be as bad as bad as you may be imagining.  Hang in there. You’ll do great.  
  7. Like
    Curt got a reaction from TJM in Less than 48 hours till my life changes   
    Tom I felt much the same.  The anxiety set in on my way to the hospital and escalated.  They cave me the choice to walk to the operating room or be wheeled in.  I opted to walk.  It was a long, scary walk.  I was really afraid that my life would be completely different after surgery.  The surgery hasn’t  prevented me from doing anything I did before surgery.  It won’t be as bad as bad as you may be imagining.  Hang in there. You’ll do great.  
  8. Like
    Curt got a reaction from Rower Michelle in Less than 48 hours till my life changes   
    Tom I felt much the same.  The anxiety set in on my way to the hospital and escalated.  They cave me the choice to walk to the operating room or be wheeled in.  I opted to walk.  It was a long, scary walk.  I was really afraid that my life would be completely different after surgery.  The surgery hasn’t  prevented me from doing anything I did before surgery.  It won’t be as bad as bad as you may be imagining.  Hang in there. You’ll do great.  
  9. Like
    Curt reacted to ColleenRae in Carona   
    Hi TJM / Tom,
    I haven't been online here for a while... so not sure if this is your first post or if there are others. Offering my two bits in response to your post...
    I can understand your concern. I had my right upper lung lobe removed in October 2018 (@ Swedish Seattle) and received a stage 1 NSCLC dx. I had no other treatment other than surgery. I am approaching my 3rd CT (April 2020) follow-up since that surgery.  I have one, possibly two nodules showing in my upper left lung now that they are watching as they appear to be slow growing cancer.  Yes, I am nervous and concerned, but trying to push it out of my head as much as I can right now and focusing on continuing with my "normal" life.
    I also live on the left coast in Whatcom County. I will be honest that I am probably a classic germ-a-phobe, especially since cancer entered my life. I have a college age son who lives with me and I worry about him bringing germs home from school (he claims everyone is sick and sniffling around him in class; and there is a large number of foreign students who returned from Christmas break) or from riding the bus (so I try to drive him as often as I can!).  I hate going to the grocery store during flu season. I find I isolate myself and have become much more of a hermit in the last two years.  So I get your concern - and my first thought(s) regarding this new virus turned to fear of a pandemic as well. When you are susceptible to respiratory issues, the news surrounding hits even closer to home.
    My recommendation - if you haven't already - is to make sure you've received a flu shot AND pneumonia vaccine. I was never one to get the flu shot before. I now get a shot every year.  I actually got two different pneumonia vaccines - one prior to my lobectomy (Prevnar 13) and then my PCP recommended I get the one that covers 21 strains (and I'll need it again when I turn age 65 apparently).  If you haven't gotten either of those, I would highly suggest you look into them.  I try to follow all other recommendations (i.e. washing hands, not touching face, getting enough rest, drinking fluids, avoiding large, enclosed public places when possible,etc.). So far, I have not been sick since I had surgery in Oct 2018 with the exception of one quick onset head cold and fever that was gone in about 48 hours.
    Yes - having the surgery is the best choice to make - in spite of "the backdrop of a burgeoning pandemic". I don't think you're being paranoid - probably just nervous, like the rest of us. I think once we are faced with this type of diagnosis we become much more aware of those things that present a threat to our happiness, health, well-being and existence.
    Colleen
  10. Like
    Curt got a reaction from TJM in Carona   
    I think having any kind of surgery makes you feel vulnerable.  I was petrified of getting a chest cold last year when I had my lobectomy.  A slightly higher level of concern crossed my mind when I heard of the Coronavirus.  My wife and I are going to Hawaii in February.  The plane and being there raised some concern for me.  I did end up getting a chest cold last year after surgery.  That wasn’t fun.  This year’s just a head cold.   I have three young children, I coach a couple of their teams  and my wife teaches first grade...so I’m in a Petri dish.  My middle son just got over the flu and my wife and two sons all have a cold and pink eye.  I’ve become much more diligent and do all of what Colleen mentioned to avoid getting sick.  I think it’s helped, up to this point I’ve avoided what the rest of my family has had.  One thing to keep in mind is that the surgery won’t make you more likely to get sick.  It just makes the respiratory symptoms a little more difficult.   I had some lymph nodes removed.  I do believe that makes it harder for my body to kick the colds I’ve gotten.  They linger a little longer than before.  
    All that being said I’m glad I got the surgery.   If anything my added diligence probably helps me get sick less than before.  
  11. Like
    Curt got a reaction from G.A.M. in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  12. Like
    Curt reacted to TJM in Google not all bad...just need to be smart   
    I only found this site a  couple days ago and am very glad I did. I just keep reading post after post and it calms me down a bit.
    Feeling much more relaxed now that there is a solid plan in place, got some Adryal and sipping a beer (no lectures) and feel confident I will get a good night's sleep. Not even going to think about preparing for surgery until tomorrow. But to my main point.
    I agree with 99% of what the strong and supportive posters say (you know who you are) but I think Google can be a very powerful tool. I spent the first 2 weeks using it before looking for a support group. I will brag a bit and say that I am very good at using it. As an Engineer it is a very valuable tool for work so I am proficient. Two quick examples regarding using it for medical questions that I have experienced first hand.
    Around 2006 I started getting debilitating head aches that lasted between 45 minutes to over 3 hours and then just suddenly went away. My first thought was a brain tumor. My doctors first thought was sinus infection. Long story short, I was able to come up with the correct diagnosis which was cluster headaches. If not for that I cringe to think how long it would have taken to get the right treatment. I would not wish these headaches on my worst enemy. If you want a taste check out ClusterHeadaches.com....a board similar to this. I thank God that I am not in a headache cycle right now.
    The second example is my oldest son who started exhibiting strange rashes. With the assistance of a wise older Dr and researching on Google I was able to nail down what the diagnosis was based on his blood tests and was able to prepare myself for that struggle well a head if time. In his case it was Idiopathic Aplastic Anemia...Dr speak for a complete shutdown of his bone marrow for unknown reasons. This disease is so rare I could not find a support group other than the wonderful staff at OHSU. By the grace of God my son was one of the lucky ones and responded perfectly to the standard protocol and has been cured for over 10 years. It was searches using Google which allowed me to advocate for his treatment but more importantly got me ahead of the curve.
    Bottom line...Google is a powerful tool, just make sure to know the dates of the publications you read, take the time to learn the lingo and value the history and evolution of the treatment.
    Sorry for the long post. Blame the Beer...not the Adryal.
    Peace
    Tom
  13. Like
    Curt reacted to Rower Michelle in Stable!   
    Hi everybody,
    Got some very good news today post scans.  The brain MRI is clear, the lymph nodes are stable, the bones are stable and the right lung is “stable and improved consistent with radiation”. What?? I’ve never had radiation, however the onc translated that means the area where the tumor was is scar tissue from the targeted therapy (alectinib) doing its job.  Doc wants to start spacing scans out so this next one is 3 1/2 months out, then we will creep for 4 months.  Labs will continue every six weeks.  
     
    The pulmonary edema is improved too. We settled on Lasix 20mg, five days a week with an occasional “social break day” if we’re heading to a movie.  
     
    There’s always a hitch at these appointments and this time we’re going to need to address persistent weight gain from the alectinib. After 15 months of therapy,  I’m 23lbs above my normal weight (30lbs from my rowing weight).  Unfortunately the dietician at the clinic is so terrible even my doctor agrees. He said I’m resourceful enough to find one independently. ( I think that’s code for he doesn’t want to hear anymore complaints about the in house dietitian because he’s stuck with her.) Normally he would recommend intermittent fasting but that is not possible on this drug due to the food requirement for absorption rates.  It’s a sh** load of calories with a high fat twice a day twelve hours apart.  It’s hard to do.  We’re going to continue to closely monitor my thyroid too.  

    I’m enrolled in the LiveStrong program at the YMCA for the next 12 weeks which might help. 
    Next week we’re off to Amelia Island, upon return I will endeavor to find a nutritionist.  
     
    Thank you guys for being there, we’re all playing the long game here!  
    Carry on! 
    Michelle
     
     
  14. Like
    Curt reacted to TJM in Meet my surgeon tomorrow   
    Great news in my opinion. Surgery scheduled for next Tuesday. Will be a VAT to remove the lower lobe of my right lung. My lung capacity is excellent now so Surgeon is not concerned about my lung capacity after Surgery. He is confident that this will be curative but will still discuss postoperative Chemo after Surgery. Less stressed now. Probably last a day or two then I'll stress the surgery.
    Thanks to all for the support. Now I need information on how to quickly repair a torn meniscus on my wife.
    👍
    Tom
     
  15. Like
    Curt got a reaction from TJM in Meet my surgeon tomorrow   
    The uncertainty and not knowing was the hardest part for me as well.  Once I knew what needed to be done I didn’t think about it much...until a day or two before surgery.   An engineer/manager personality will suite you well on this journey.  It takes a fair amount of persistence to see it through.  
  16. Like
    Curt reacted to Tom Galli in Meet my surgeon tomorrow   
    Tom.
    I'm also an engineer and was the worst kind of patient. Problem solving is my business, but my skills only work when solving problems with things. They have no impact on people and their (my) disease. With the exception of knowledge about statistics, applying engineering skills to surgery, chemotherapy, doctors, nursing and progression produced mayhem.
    Initial treatment of lung cancer is pretty straightforward. Surgery is the preferred first and best option. If not surgery, then chemoradiation following a well established formula called a national standard of care. But if these treatments do not arrest, treatment transitions from established procedure to medical art. The medical oncologist is the artist and tries to guess which of the available methods might work. It is an educated guess but lung cancer mutates very quickly to combat drugs and that is why it is so dangerous.
    Reading into our disease is essential knowledge. Here is a good start. 
    Welcome here. You may have a bunch of questions after your surgical consult and this forum is a great place for answers based on actual experience.
    Stay the course.
    Tom
  17. Like
    Curt got a reaction from G.A.M. in Back on the Roller Coaster   
    @G.A.M. I hold surgery as treatment in high regard.  I had an upper right lobe lobectomy via video assisted thoracoscopic surgery (VATS) at the end of last February.  Recovery is different for everyone.  Here was my experience.  It was three incisions, one under my arm, one on my side and another on my upper abdomen.   After the surgery I had a drain tube in the incision on my side.  I had the surgery on a Tuesday night, was up and walking short distances Wednesday morning and released on Friday afternoon.  Requirements for release were that I was able to walk each day, my chest was clear of air pockets and the drain was removed.  I know others have been released with the tube (drain) in.  They will manage your pain really well while in the hospital.  Don’t be a hero, take the medicine.  I decided I was feeling so good that I could go a little longer with no pain meds.  I was very wrong.  Once I was home I slept a lot.  The first few days I had an arm chair next to my bed.  I would get up, eat, walk, sit there for a bit then go back to sleep.  I took pain medicine until Sunday and then moved to alternating Tylenol and Motrin.  The pain pills caused constipation and the gabapentin (nerve blocker) made my head feel like it was spinning.  I felt much better without both, you should take whatever you need to take for as long as you need to take it to make sure you aren’t in pain.  You should walk and do breathing treatments as much as possible.  Both are easier if you aren’t in pain.  By Monday I ventured to the coach and was able to stay up for longer periods of time but was still tired.  It took about ten days for me to venture out of the house for a haircut, two weeks for me to drive.  Three weeks before I went back to work.   I did not require any follow up treatment and have been NED since the surgery.  I have some numbness in the side where my surgery was performed and some pulling internally when I cough.   Neither are painful or disruptive.  Surgery isn’t fun but it is not as bad as I imagined it would be.  My breathing is back to pre surgery levels and I’m not limited in my daily activities.  Some tips:
    - the wedge pillow others have mentioned.
    - a small pillow to squeeze when you sneeze or cough.  
    - walk as much as you can. 
    - do the spirometer (breathing exercise) as much as possible.  
    - rest as much as you can.  

     Any other questions along the way please ask.  I’ll be rooting for you.  
  18. Like
    Curt got a reaction from Tom Galli in Back on the Roller Coaster   
    Hi @TJM   I responded to your other post.  I’ll try to answer your questions here.  

    The only prerequisite to surgery for me was a pulimonary function test and the normal preop blood work.  I had my consult on December 24 (yes Christmas Eve) of 2018 and the Surgery in February 28.  I could have had it in January.  I delayed it a bit so I could go on an already  schedule family vacation.  At the time I didn’t know it was cancer.   There was a 60% chance I was removing a benign nodule.  It will all depends on the surgeons availability.  
     
    People do have to have “open” surgery if the tumor is too large or more often if it is in a place they can’t get to via VATS.  Your surgeon will be able to tell you which is required.  I had mine via VATS.  The recoverY time and ongoing side affects are different for both.   VATS is the easier of the two and is as affective as open surgery when used in the right circumstances.
    Good luck today.   
     
    @G.A.M. I wasn’t clear if your surgery was today or next Thursday.   If it’s today good luck.  Let us know how you are doing when you feel up to it.  
  19. Thanks
    Curt got a reaction from TJM in Back on the Roller Coaster   
    Hi @TJM   I responded to your other post.  I’ll try to answer your questions here.  

    The only prerequisite to surgery for me was a pulimonary function test and the normal preop blood work.  I had my consult on December 24 (yes Christmas Eve) of 2018 and the Surgery in February 28.  I could have had it in January.  I delayed it a bit so I could go on an already  schedule family vacation.  At the time I didn’t know it was cancer.   There was a 60% chance I was removing a benign nodule.  It will all depends on the surgeons availability.  
     
    People do have to have “open” surgery if the tumor is too large or more often if it is in a place they can’t get to via VATS.  Your surgeon will be able to tell you which is required.  I had mine via VATS.  The recoverY time and ongoing side affects are different for both.   VATS is the easier of the two and is as affective as open surgery when used in the right circumstances.
    Good luck today.   
     
    @G.A.M. I wasn’t clear if your surgery was today or next Thursday.   If it’s today good luck.  Let us know how you are doing when you feel up to it.  
  20. Thanks
    Curt got a reaction from TJM in Meet my surgeon tomorrow   
    When it rains it pours Tom.  Good luck with your consult today.   I had to do my initial consult alone as well.  Wasn’t fun.  Any questions just ask.   
  21. Like
    Curt got a reaction from TJM in Am I doing a right thing? I am new this forum   
    @Ted I was in the exact situation last year.  I went into surgery not knowing and came out with Stage 1 Lung cancer.  If it wasn’t cancer they would only have taken a wedge with no change in lung capacity.  Since it was cancer they removed the entire lobe.  I have not required any follow up treatment.  My lung capacity is back to normal.  I have a little bit of numbness.  Surgery is the gold standard for treatment.  It does feel barbaric to do it without knowing for sure but I did and I’m glad I did.  
  22. Like
    Curt got a reaction from BridgetO in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  23. Like
    Curt got a reaction from Tom Galli in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  24. Like
    Curt got a reaction from Steff in 3mm bottom right lobe   
    Hello @marinisa.  Hearing you have a nodule in your lung is terrifying.  Some things that may calm your nerves.  1) a 3mm is VERY small.  The small edge of a nickel is 2mm.  I’m surprised they could even see that on a scan.  2) the majority of nodules are NOT cancer.   
     
    You are correct that a CT scan will not be able to definitively diagnosis a single 3mm nodule.  It’s also probably too small to biopsy.  They will likely have you get scans every six months to monitor it.  If it grows beyond 10 mm they will probably do a PET scan.  Depending on the result of the PET they may try to biopsy it.  All of that can take years.  The longer you go with no changes to the nodule the more likely that it is not cancer, remember most are not.  
  25. Like
    Curt got a reaction from Tom Galli in Back on the Roller Coaster   
    @G.A.M. I hold surgery as treatment in high regard.  I had an upper right lobe lobectomy via video assisted thoracoscopic surgery (VATS) at the end of last February.  Recovery is different for everyone.  Here was my experience.  It was three incisions, one under my arm, one on my side and another on my upper abdomen.   After the surgery I had a drain tube in the incision on my side.  I had the surgery on a Tuesday night, was up and walking short distances Wednesday morning and released on Friday afternoon.  Requirements for release were that I was able to walk each day, my chest was clear of air pockets and the drain was removed.  I know others have been released with the tube (drain) in.  They will manage your pain really well while in the hospital.  Don’t be a hero, take the medicine.  I decided I was feeling so good that I could go a little longer with no pain meds.  I was very wrong.  Once I was home I slept a lot.  The first few days I had an arm chair next to my bed.  I would get up, eat, walk, sit there for a bit then go back to sleep.  I took pain medicine until Sunday and then moved to alternating Tylenol and Motrin.  The pain pills caused constipation and the gabapentin (nerve blocker) made my head feel like it was spinning.  I felt much better without both, you should take whatever you need to take for as long as you need to take it to make sure you aren’t in pain.  You should walk and do breathing treatments as much as possible.  Both are easier if you aren’t in pain.  By Monday I ventured to the coach and was able to stay up for longer periods of time but was still tired.  It took about ten days for me to venture out of the house for a haircut, two weeks for me to drive.  Three weeks before I went back to work.   I did not require any follow up treatment and have been NED since the surgery.  I have some numbness in the side where my surgery was performed and some pulling internally when I cough.   Neither are painful or disruptive.  Surgery isn’t fun but it is not as bad as I imagined it would be.  My breathing is back to pre surgery levels and I’m not limited in my daily activities.  Some tips:
    - the wedge pillow others have mentioned.
    - a small pillow to squeeze when you sneeze or cough.  
    - walk as much as you can. 
    - do the spirometer (breathing exercise) as much as possible.  
    - rest as much as you can.  

     Any other questions along the way please ask.  I’ll be rooting for you.  
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