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Rower Michelle

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  1. Like
    Rower Michelle got a reaction from Tom Galli in Carona   
    Ditto here.  Now I get the flu shot every year, plus had the pneumonia and shingle shots (the shingle vaccines were not for the feint of heart!!). As we get ready for our trip to FLA, I have high grade surgical masks, hand and face sanitizer too.  All of my plane clothes will go directly into the washing machine upon arrival.  
    This morning one of the kids had a horrible chesty cough which sent me flying out of church like my hair was on fire.  
    Is this crazy?  Nope! All of this I consider to be part of our new normal, we have to be super diligent about germ management.    
     
  2. Like
    Rower Michelle got a reaction from Steff 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
     
     
  3. Like
    Rower Michelle 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
    Rower Michelle reacted to Opal in Flu shot and immunotherapy   
    Thanks Michelle. I read that too. I fear a head to toe rash like I got after last year's flu shot. While I'm not getting infusion, I know it's still in my system.  I think I might take my chances and pass this year. Wondered what others are doing.  Thanks for the info. 
    Have a good trip and fun in the sun.
     
  5. Like
    Rower Michelle reacted to LouT in Lou vs. the Chest Tube   
    Tom
     I’m glad it offered some help for you.  I fully understand the anxiety and I believe you will do better than you think and heal more rapidly than you expect.  I look forward to your next update.  Best of luck to you. 
    Lou
  6. Like
    Rower Michelle reacted to hope16 in Stable!   
    Michelle you are a sweetheart😘
  7. Like
    Rower Michelle got a reaction from Opal in Stable!   
    Thank you all for the kind words, support and prayers!  I appreciate our family friendship we have here!
    Lisa,  I hope you have a great time on the slopes! 
    Deb- I hope you're enjoying some indoor tennis this winter
    Hope- I think and pray for your husband regularly. 
    Tomm- So good to have a "hippie" to keep us on our toes- that last joke was pretty funny!   
    Ro- I  hope Bean Town isn't too snowy &  cold.  I pray regularly for the clinical trial to get going for you too.  One of my ALK peers is going into some super high tech trial  at MGH for TROP2 a novel approach in lieu of TKI targeted therapy.  Next generation mutant treatment.... hmmmm.... 
    Colleen Rae- So good to hear from you! I totally understand why you would want to take a sabbatical from the forum.  This isn't easy stuff we're dealing with! 
      I think  cancer does something to mess with our metabolism.  Just before I was diagnosed, but before I got really sick, I started to gain weight out of nowhere which made no sense since I was training for head race season (5K regatta's  in the Fall). My PCP wrote if off to menopause.   Another one of my rowing team mates had a similar experience before his cancer diagnosis.  Weird.  I have to say that it took me a year to make enough progress to get to the LiveStrong Program.  I think Tai Chi really helped to repair my lung capacity.  My right lung was a real mess, going up a flight of stairs was such a challenge.   
    What's interesting about this LiveStrong Program is that there are a total of four ladies, three of us have lung cancer.  I had expected a cliquey bunch of breast cancer survivors (like my yoga class).  The oldest participant is 75 years old with Stage IV NSCLC PDL-1 AND brings a portable oxygen container with her!   Our trainers are totally into rebuilding our lung capacity (safety in numbers???).  We'll be doing all sorts of things from water aerobics to yoga.   
    Try not to get too discouraged about the weight gain, we're all in the same boat.  Please let us know if you learn anything useful from the new dietician.  It's not like we can join weight watchers, there's got to be a sneaky way to trick our metabolisms into firing on all cylinders again.   Those grey days can be such a downer, especially this time of year in your neck of the woods.  Spring is coming soon!  Just one more month of really crappy weather (and February is a short month).
    Love to you all! Packing complete, I am so ready for some sunshine!    
    Michelle  
     
  8. Like
    Rower Michelle got a reaction from hope16 in Stable!   
    Thank you all for the kind words, support and prayers!  I appreciate our family friendship we have here!
    Lisa,  I hope you have a great time on the slopes! 
    Deb- I hope you're enjoying some indoor tennis this winter
    Hope- I think and pray for your husband regularly. 
    Tomm- So good to have a "hippie" to keep us on our toes- that last joke was pretty funny!   
    Ro- I  hope Bean Town isn't too snowy &  cold.  I pray regularly for the clinical trial to get going for you too.  One of my ALK peers is going into some super high tech trial  at MGH for TROP2 a novel approach in lieu of TKI targeted therapy.  Next generation mutant treatment.... hmmmm.... 
    Colleen Rae- So good to hear from you! I totally understand why you would want to take a sabbatical from the forum.  This isn't easy stuff we're dealing with! 
      I think  cancer does something to mess with our metabolism.  Just before I was diagnosed, but before I got really sick, I started to gain weight out of nowhere which made no sense since I was training for head race season (5K regatta's  in the Fall). My PCP wrote if off to menopause.   Another one of my rowing team mates had a similar experience before his cancer diagnosis.  Weird.  I have to say that it took me a year to make enough progress to get to the LiveStrong Program.  I think Tai Chi really helped to repair my lung capacity.  My right lung was a real mess, going up a flight of stairs was such a challenge.   
    What's interesting about this LiveStrong Program is that there are a total of four ladies, three of us have lung cancer.  I had expected a cliquey bunch of breast cancer survivors (like my yoga class).  The oldest participant is 75 years old with Stage IV NSCLC PDL-1 AND brings a portable oxygen container with her!   Our trainers are totally into rebuilding our lung capacity (safety in numbers???).  We'll be doing all sorts of things from water aerobics to yoga.   
    Try not to get too discouraged about the weight gain, we're all in the same boat.  Please let us know if you learn anything useful from the new dietician.  It's not like we can join weight watchers, there's got to be a sneaky way to trick our metabolisms into firing on all cylinders again.   Those grey days can be such a downer, especially this time of year in your neck of the woods.  Spring is coming soon!  Just one more month of really crappy weather (and February is a short month).
    Love to you all! Packing complete, I am so ready for some sunshine!    
    Michelle  
     
  9. Like
    Rower Michelle reacted to TJM in Lou vs. the Chest Tube   
    As someone who will be taking this journey in about 48 hours this was the perfect string for me to read. Thanks for sharing it.
    As I have been sleep deprived for most of the last month I look forward to a walk, a sit, a sleep followed by a walk, a sit and a sleep.
    One more blood draw for me tomorrow then on to surgery. I am apprehensive but not as stressed as I thought I would be....more occupied with some final details to take care of than the Surgery.
    Peace
    Tom
  10. Like
    Rower Michelle 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
  11. Like
    Rower Michelle reacted to Curt 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.  
  12. Thanks
    Rower Michelle reacted to BridgetO in Carona   
    Michelle, Here's a suggestion about plane travel, or maybe you already do this. I wipe down my tray table, seat arms and plane wall (if I'm in a window seat), with antibacterial wipes. You can get some in small packets that can go in your 3-2-1 bag. I've had fewer colds after flying than I used to get.
  13. Thanks
    Rower Michelle got a reaction from Opal in Flu shot and immunotherapy   
    My lung buddy is on Keytruda.  She got  vaccines for pneumonia, shingles, and the flu shot every year.   She didn't get sick from the flu shot but her hubby went down for the count for a few days! I read in the paper that the flu shot is another mis matched year, so who knows if it really helps?  Couldn't hurt to have some added protection.  
  14. Like
    Rower Michelle got a reaction from Tom Galli in Flu shot and immunotherapy   
    My lung buddy is on Keytruda.  She got  vaccines for pneumonia, shingles, and the flu shot every year.   She didn't get sick from the flu shot but her hubby went down for the count for a few days! I read in the paper that the flu shot is another mis matched year, so who knows if it really helps?  Couldn't hurt to have some added protection.  
  15. Like
    Rower Michelle got a reaction from Tom Galli in Stable!   
    Thank you all for the kind words, support and prayers!  I appreciate our family friendship we have here!
    Lisa,  I hope you have a great time on the slopes! 
    Deb- I hope you're enjoying some indoor tennis this winter
    Hope- I think and pray for your husband regularly. 
    Tomm- So good to have a "hippie" to keep us on our toes- that last joke was pretty funny!   
    Ro- I  hope Bean Town isn't too snowy &  cold.  I pray regularly for the clinical trial to get going for you too.  One of my ALK peers is going into some super high tech trial  at MGH for TROP2 a novel approach in lieu of TKI targeted therapy.  Next generation mutant treatment.... hmmmm.... 
    Colleen Rae- So good to hear from you! I totally understand why you would want to take a sabbatical from the forum.  This isn't easy stuff we're dealing with! 
      I think  cancer does something to mess with our metabolism.  Just before I was diagnosed, but before I got really sick, I started to gain weight out of nowhere which made no sense since I was training for head race season (5K regatta's  in the Fall). My PCP wrote if off to menopause.   Another one of my rowing team mates had a similar experience before his cancer diagnosis.  Weird.  I have to say that it took me a year to make enough progress to get to the LiveStrong Program.  I think Tai Chi really helped to repair my lung capacity.  My right lung was a real mess, going up a flight of stairs was such a challenge.   
    What's interesting about this LiveStrong Program is that there are a total of four ladies, three of us have lung cancer.  I had expected a cliquey bunch of breast cancer survivors (like my yoga class).  The oldest participant is 75 years old with Stage IV NSCLC PDL-1 AND brings a portable oxygen container with her!   Our trainers are totally into rebuilding our lung capacity (safety in numbers???).  We'll be doing all sorts of things from water aerobics to yoga.   
    Try not to get too discouraged about the weight gain, we're all in the same boat.  Please let us know if you learn anything useful from the new dietician.  It's not like we can join weight watchers, there's got to be a sneaky way to trick our metabolisms into firing on all cylinders again.   Those grey days can be such a downer, especially this time of year in your neck of the woods.  Spring is coming soon!  Just one more month of really crappy weather (and February is a short month).
    Love to you all! Packing complete, I am so ready for some sunshine!    
    Michelle  
     
  16. Like
    Rower Michelle reacted to Deb W in Stable!   
    So happy for you Michele.  Enjoy that fabulous trip you have planned.
    Deb
  17. Like
    Rower Michelle reacted to ColleenRae in Stable!   
    Happy to come here and read your good news Michele. I have not been participating on a regular basis and always feel some panic / fear when I do get a chance to check in and see how others are doing...
    So glad to read your posts. You are very well-informed, a true fighter and invoke a sense of humor into a lot of this as well. I just don't have your energy and persistent optimism... but it is so inspiring!
    Well, I felt a little better reading that others are on their 3rd set of clothing changes/sizes, although I can't say it's due to any treatment! I have gained over 20 lbs since my lobectomy and I can't blame it on chemo or any drugs. I only had surgery. I honestly don't get it as I don't consume any more food than I used to. I am vegetarian (probably too many carbs) considering going all vegan. I don't get exercise like I used to / would prefer... Weather has been horrible for too long. I used to walk a lot, but I'm finding the damp and heavy rain makes breathing harder for me and I cough. Maybe I need to move to a dryer part of the U.S. (but I wilt with too much heat / humidity and would miss the green!)  I worry a lot about the weight gain when I read how it raises the risk of some cancers... and inflammation has been a problem as well. I just switched medical clinics and will be seeing a dietician at no charge (the other clinic would not refer; said insurance would not cover!), so hoping that will help.
    I did attend a Livestrong program at our local YMCA for about 6 weeks and had to quit for family-related reasons. Hoping to start it again if my next scan shows I don't need any treatment. I found the program was good for strength training, but I did not find it helpful in addressing breathing / lung issues like endurance. (i.e. I wanted to use the treadmill as it really seemed to help with deep breathing, but they wanted to focus more on weights).  Unfortunately, the group for the session I was in was not the most social of groups - this was not a place or program to seek camaraderie within - but I think the Livestrong program itself is a great resource and gift to those communities that can provide it.  I really do hope to start and do it over again - and complete the 12 weeks sessions this time!  Good luck!
    Again, really happy to "see" you here and to read how you are progressing. Thank you for all of the info and hope that you share with all of us. Hope you have a wonderful trip! 
  18. Like
    Rower Michelle got a reaction from ColleenRae 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
     
     
  19. Like
    Rower Michelle reacted to Opal in Stable!   
    Michelle, you are most welcome!  Yes, swap shop would be fun. But seems like it may entail some work and I don't want any of that right now. Lol I need a vacation first, if even just to Jersey shore.
  20. Thanks
    Rower Michelle reacted to Roz in Stable!   
    Michelle,
    I am so thrilled to hear your news!! HOORAY!!! Enjoy Amelia Island..it's on my list to visit some day..
    Take care,
     
    Ro
  21. Like
    Rower Michelle reacted to LouT in Google not all bad...just need to be smart   
    Tom,
    Please keep us appraised as you can.  And we're here at any time you need a call (although Michelle is a rower so she is used to getting up earlier than I do)...
    Lou
  22. Like
    Rower Michelle got a reaction from Opal in Anxiety, Fear, Ignorance, Impatience and surprise   
    Your observations are spot on, the early days of this experience is so surreal it’s hard for anyone who is outside of our inner circle to really comprehend.   I heard from someone recently that being diagnosed with lung cancer is like being stranded in a foreign county. Not knowing the language and no immediate road map to find your way home.  
    If you’d like to make your insomnia increasingly more productive, you might want to check out the GO2FOUNDATION Lung Cancer Living Room on YouTube.  It’s also a wealth of informative from some of the top oncologists.  They are two hours with the introduction of group members during the first 40 minutes.  The 2019 sessions were very interested.
    Sleep will happen.....Carry On   
     
  23. Like
    Rower Michelle got a reaction from Roz 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
     
     
  24. Like
    Rower Michelle reacted to Lisa L in Stable!   
    Such terrific news, I hope you have a great trip.  I have my 6 month scan at the end of feb. and I’m starting to freak a little so gonna road trip to Colorado with some girlfriends and do a little snowboarding 🏂 right after the scan ...love and light ❤️
  25. Thanks
    Rower Michelle reacted to Tomm in Stable!   
    Hi Michelle,
    I'm really happy to hear of your great scan!!  I just added "Back to the Island"  Leon Russel to my chair playlist  ..sounds like a good plan after all your hard work.
    A few years ago I decided to loose some weight and started by only drinking water, one coffee a day, hemp milk in my cereal and no other liquid. All juice has natural sugar as does wine..I didn't change anything else and lost 40 lbs. and kept it off. I do drink coconut water now.
    Thanks for sharing so much information as it has been a big help to me and I'm sure others.
    Enjoy your Island time
     
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