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I’m so happy I found you all!


Susan4

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A year (almost to the day) since my right upper lobectomy and I finally discovered this site.  I am grateful for early detection and diagnosis.  My health is good, but there is one thing missing for me.  I am a runner.  Before my surgery, I loved the feeling of getting outside and running five or six miles before work.   I have run five marathons and many other distance races.  I want to love it again! Are there any other runners out there who can offer advice or encouragement? Thank you.

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Hi Susan

Welcome to our group!  I was a competitive rower before my diagnosis.  I would wake up at 4:30am be on the lake by 5:45am to watch the sun rise & bald eagles eat breakfast.  I rowed 10-12k in the am, ran 5k at lunch.  

My doc thinks in about a year I’ll be able to manage longer distances.  I’m slowly working back to 2k.  

Persistance, perseverance & patience is my framework.   I have learned to accept that I can not compare my split times to my pre-cancer diagnosis.  I set a new baseline & work from there.  Listen to your body- if you’re tired rest. 

From my perspective- a little bit of rowing is better than no rowing.  As for the 5k run- bleh- never could get the runners high so I don’t miss that part.  

I think the key is to keep your legs strong. You might want to try the boring recumbent bike (we also have recumbent trikes we found on Craig’s list)   Short intervals could also work for you.  Try walking for 5 minutes & running for 2-3 minutes then build.  

There are lots of peeps who return to their sport after the LC diagnosis.  You will too! 

Michelle

 

 

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Hi Susan.  I’m three weeks post op from an Upper Right lobe lobectomy.  I’m glad to hear you are doing well a year later.  It gives me hope. The day after the surgery the hospital told me I had to walk a mile a day if I wanted to go home.  I did that religiously while there.  Since home I’ve been doing 30 minutes on the treadmill (it’s too cold to be outside) slowly increasing my walking speed and incline.  I’m up to a mile and a quarter in 30 minutes on a slight incline.  It’s a long way from a 7 minute mile but who cares.   It’s more about how I feel afterwards, not how far or fast I went.  One bonus to having lower lung capacity is that you can get your heart rate going with less effort.  Higher heart rate equals more cardiovascular exercise, with less effort.  That’s the math I’m using anyway.

I’m not sure if you feel this way but when I exercise it is a pretty strong reminder of the fact that I had cancer and lost a part of my body because of it.  That reminder stings.  I’m hoping it lessens with time but I can imagine a lot of frustration comes with those reminders.  I’m choosing to not focus on the why I’m not able to do what I use to and focus more on how much improvement I’m  able to achieve now.  I’m focused on recovering from the surgery and improving.  I’m obsessed with the spirometer and getting as close to my preop lung capacity as possible.   I hope I can keep up that perspective long term.  I’d like to get back in a Montauk bike this summer   

Lungevity has some endurance events you may want to look into when you feel ready.   https://lungevity.org/events/team-lungevity-endurance-events

Its awesome you are interested in getting back into running.  Go with how you feel during and after running, that’s what’s most important.  Not how far or fast you go.  

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Curt- that’s really great guidance!  I thought of you guys this morning.  No one told me about a spirometer (it wasn’t a priority in looking at my medical records pre-ALK+ I was much sicker than I realized at time of diagnosis).   The docs commented that I had unusually large lung compacity (which probably saved my life).  I learned how to breathe from my row coach- a former Olympian.   We would do our warm up rows breathing only through our  nose.  It expands the lung capacity!  So you might want to try that for ten minutes on the treadmill.  I’ve moved my oxygen levels from 90% back up to 100%.  I delight in the befuddled looks I get from the medical team! 

Susan you might want to look into a restorative yoga class. They are often free at cancer centers.  I was in tears after my first class but I’m determined to get back in my boat this summer.  

There’s so much breathing & it’s harder than you think but so worth the end result!  Keep us posted on your adventures. Spring is almost here & we can all finally get out! 

Michelle

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Michelle I also had very high lung capacity.  I use to swim laps a lot when I was in college and my early 20’s.  I am at about 75% of my preop capacity.  The doctor said I won’t see my full potential recovery for up to a year and it would be 80-90%.  I’m determined to do better and quicker than that.  I may even take up swimming again.   

I do practice breathing through my nose.  In through the the nose out through the mouth.  I have no idea where that was drilled into me but it was over the years.  Probably from the various sports I played.  I find it easier to control my normal breathing that way.  I still have a weird tickle in my throat that makes me gulp on occasion.  It’s really uncomfortable and embarrassing.  Breathing through my nose helps control that.  

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Thank you Michelle and Curt for your encouragement.  I replied individually to each of you last night. But for some reason I cannot see my replies.  It sounds like both of you have an amazing attitude!  Your determination is inspiring! I will take your advice about trying not to compare what I can do now to what I could do before.  That comparing has brought me to tears and ended up discouraging me each time I’ve attempted a running plan since last March.  It’s that “reminder” you mentioned Curt.  And yes, it stings.  I have to say that one year later, I ONLY get that reminder when I am doing vigorous exercise.  I feel perfectly normal during typical daily activities.  So yes, there is hope!  I bet you’ll both be out there very soon rowing and biking, and enjoying everything you love doing. Persistence, perseverance & patience!  💪🏼🚣🏼‍♂️🚴🏽‍♂️🏃🏽‍♀️

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I've run out of "likes" today but would love to thank all who posted here... It helped a lot to read!

I am not nor have I ever been a big athlete, but I've always been active. Swimming, biking, volleyball here and there.  I think the reduced physical activity / ability has been one of the harder things to deal with emotionally. It's helped me to realize that this has brought others to tears as well.  Now - 6 months post RUL lobectomy - I find I have to get out everyday to walk; it's something I have to do or I really miss it. February was so cold and icy where I live - I felt like I was going through withdrawals when I couldn't walk far or fast enough. I can only imagine what it's like for those of you who were such ardent athletes.  I've been trying some intermittent running with brisk walking in the woods / trails where I live.  The first time I ran I burst into tears - it felt sooooo good.  My son was with me and it was such an intimate experience - we found ourselves laughing and crying at the same time.  I've been trying to run again, but it seems like my breathing has become more difficult.  I just saw my surgeon for the first time post-op and told him I was having some minor pain / discomfort in the mid-upper right section of my chest.  He said the CT scan looked fine but is attributing that to scar tissue healing where the lobe was removed.  I'm hoping that will get better - it's a bit of a constant reminder that my body has changed since surgery. I'm just grateful I'm mobile and can do what I can do. Hoping you all can reach your goals and resume doing what you enjoyed pre-cancer (but don't put too much pressure on yourselves!). Thanks for your inspiration.

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  • 3 weeks later...

Hi, Susan,

Welcome to LCSC! I wanted to share this with you about a runner names James, who is living with lung cancer. We recently shared James' story in a LUNGevity Spotlight post:

https://lungevity.org/for-patients-caregivers/blogs/voices-from-the-community/survivor-spotlight-james-hiter

Please let me know if you would like to connect with him and I can put you in touch!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

 

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  • 3 weeks later...

Thanks everyone for sharing your stories.  I am inspired.   I had a upper left lobectomy (stage 1B) and a left lower lobe wedge resection March 22 and I've been walking 3-4 days a week.  I can' get used to the sound I make when I breathe in...it makes me feel nervous.   The sound reminds me that I'm different now and so I don't push myself.  I am so grateful  that I'm able to walk for 2 miles, but at the same time I miss the old me that used to run.  Even though the surgeon tells me I'll be back to playing tennis in 12 weeks, I'm not sure I believe him.  Honestly, I'm worried I'll never have the endurance I once had.  I Running used to help me with tennis and I don't know if/when I'll go back to running.  I so appreciate you all sharing your stories.  Thank you. 

Debbie

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Hi Debbie. I had a right upper lobe lobectomy on Feb 26.  I can relate to the strange breathing sounds and being self conscious of them.  It has gotten better.  Tomorrow is 9 weeks for me.  My breathing is pretty much back to normal.  No more funny sounds.  I have the occasional gulp sound when I’m talking to much and forget to breath and need to catch my breath.  I am just getting over a cold where I coughed a TON.  That seems to have helped, although the coughing wasn’t fun it helped to strengthen my lungs.  I do have a slight wheeze sound when I cough.  Walking 2 miles a day is AWESOME.  Keep that up.  I also did the spirometer a lot.  Two other exercises I do.  One was to huff like I was trying to fog a mirror.  I do those ten times, twice a day. The third was coughing.  I’ve been doing that a lot because of the cold and the tickle. I have a bit of a lump that turns into a tickle then back into a lump in my throat.  That helps keep me coughing.   

The feeling different part hasn’t gone away for me, even though I don’t breathe different anymore.  I’m still working through that one.  

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Hi Curt,  Thanks for your message.   I'm so happy for you...9 weeks and your breathing feels normal!  I'm about 4 weeks behind you on the surgery...I need to be more patient with myself I guess.  I am going to start the huff...the respiratory therapist never mentioned that one so thanks!   I haven't used the spirometer since my first week home.  I thought once I was up and getting around that I didn't need it. Well, I'm not exactly walking  2 miles each day, but that's my goal.  My dog motivates me because every time he sees me reaching for my fitness jacket or shoes he goes nuts, and then I feel like I have to take him.  It's funny because he used to be my running partner and he looks back at me when we walk as if to say when are we going to get started? 

Sometimes I wonder if the feeling different part will stay as a reminder to be present and enjoy every minute.

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I was pretty impatient too.  Four weeks out I was not as far along as I thought I would be and was pretty down about it.  The next few will be a lot better for you.  Definitely after six week.  

That a good perspective on feeling different.  I’ll try and remember that.  

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