This Yr 20 Rounds of Chemo, Biked 1,500 Miles, Ran 375 Miles, Swim 30 Miles

NewHere

To go into chemo or continue chemo is a personal decision.  And many times, depending on diagnosis and other things, passing on chemo for quality of life choice makes sense.  And on the scale of things I like to do, chemo is not high on the list.

I had surgery and 12 rounds of chemo almost 5 years ago.  Then a lung met with part of my lung removed.  Then cancer came back inoperable.  Was able to hold off chemo for a year and monitored things.  Then a year ago, had to go back on chemo.  Since being on chemo I biked almost 1,500 miles, ran almost 375 miles and went swimming to the tune of 30 miles. Some things were treadmill, some were outside.  Same for bike.  And swimming.  Actualy I have been taking it easy the last month and a half due to plantar issues and also had a couple of minor things derail me during the year, or the totals would have been greater.

And I did numerous races.  

I was never an athlete.  And I hate running.  But when my cancer came back, did what I could do to stay healthy.

A couple of weeks ago, the chemo stopped working.  And I am scrambling to find something else to keep me going.  For many chemo was something they did not want.  Right know I would love to be able to get back to my FOLFORI/Avastin every three weeks, including feeling less than great for a week.  And being tired.

Everyone needs to make their own decisions.  And I have been fortunate that, for me, the balance of chemo vs my life made the chemo decision an easy one.

I would never tell anyone what to do and respect the decision not to do chemo.  But my approach was  where chemo is on the table and could help, it can always be stopped if it is bad and beccomes a situation where the quality of life is degraded or upside is limited. Some of the other treatments I am facing look to be chemo with very limited upside and major downsides in terms of percentage of risk of side effects and the nastiness of the side effects.  Which seems to be what happens after the first or second line treatments - less benefits, higher risks.  Urgh

I know how tough it can be (my wife says I forget the bad few days quickly) and also have seen family members have to deal with chemo. 

Just figured I would put this out there in case people are wrestling with the decision on what to do - I have done fairly well with it 

 

abita

Thank you. I also don't love

Thank you. I also don't love chemo, but for me, it is better than not living and being here for those I love.

I hope you find an alternative that works well for you.

And thanks for helping nudge me to start a cardio plan to be in the best health I can be. I am told that the fatigue and sleepless nights will get better if I can start some exercise. Obviously, the fatigue will be there from the chemo, but I am told it isn't as bad once you start exercising on a regular basis.

NewHere

It Helped Some

With the tired and sleep.  But I did find myself getting more tired over time.  But I had 24 rounds non-stop of FOLFORI with avastin without a break.  Plus I was also probably pushing things as you can tell by the numbers.  Working out then entering races were (and are) part of the goals that keep me going.  And there is no doubt that my cardio condiitoning has gotten me extra time.  The scans of my lungs are scary   Instead of being on a couch on oxygen though, I am exercising.  I am guessing the clock is starting to tick more on me being able to do this, but I will keep on doing this and hope science gets caught up quickly

SandiaBuddy

Exercise

My approach is that, "exercise helps with everything."  Congratulations on your athletic accomplishments, despite the challenges.

Annabelle41415

Stamina

You have accomplished more than the normal person.  Exercise is so good for you no matter how you get it.  Keep up the activity as it can only benefit you.

Kim

NewHere

SandiaBuddy said:

Exercise

My approach is that, "exercise helps with everything."  Congratulations on your athletic accomplishments, despite the challenges.

Yup Sandia

You and I in agreement and I love watching your reports.  I have been in slightly different situation in terms of I probably would be gone by now but for chemo.  My margins were clear, but 1/2 lymph nodes were cancerous and a couple of horses probably already left the barn by the time I was diagnosed.  Was in scans but not 100%.  So I was advanced Stage IV.  And during the first round of FOLFOX there was some knock down on suspect spots.  Spots were small and did shrink.  Would I be in the same place I am now without chemo?  Either the first round or this recent bunch?  Doubtful in my mind. I think I bought time.  

What is coming up now, well on that I have some serious tough choices and will see how they play out.  But I ain't stopping exericsing.  Oh, one more thing, you need to post a couple of more photos from your hikes.  Awesome stuff on the avatars

NewHere

Annabelle41415 said:

Stamina

You have accomplished more than the normal person.  Exercise is so good for you no matter how you get it.  Keep up the activity as it can only benefit you.

Kim

I am too stubborn stupid and slow Kim

I am not stopping until I have no choice.  When on chemo closer to bad days, it would sometimes take a bit more to get off the couch.  And I got a treadmill for the bad days.  Even then tough sometimes.  But most people cannot do what I am doing.  I refuse to quit.  I want to be alive as long as possible as long as the good days outweigh the bad days.  And right now, even when on chemo with the bad days on a three week cycle, I do not want to leave this world by any stretch and gladly take the s__t days because I have enough great ones every three weeks.  

 

Canadian Sandy

Hope you find a treatment to

Hope you find a treatment to help. You are such a strong person.

SandiaBuddy

NewHere said:

Yup Sandia

You and I in agreement and I love watching your reports.  I have been in slightly different situation in terms of I probably would be gone by now but for chemo.  My margins were clear, but 1/2 lymph nodes were cancerous and a couple of horses probably already left the barn by the time I was diagnosed.  Was in scans but not 100%.  So I was advanced Stage IV.  And during the first round of FOLFOX there was some knock down on suspect spots.  Spots were small and did shrink.  Would I be in the same place I am now without chemo?  Either the first round or this recent bunch?  Doubtful in my mind. I think I bought time.  

What is coming up now, well on that I have some serious tough choices and will see how they play out.  But I ain't stopping exericsing.  Oh, one more thing, you need to post a couple of more photos from your hikes.  Awesome stuff on the avatars

Thanks

Thanks.  I try to keep the postings topical, as I realize that some are facing more challenges than me and sometimes I feel a bit guilty to be doing so well.  But if I make it to the three year mark this Spring, I will do a hiking post!

PamRav

Thanks NewHere

For ALL your frank and insightful posts.  Your thoughts often help put my own in perspective   I'm on the same path as you, just  little earlier in the game ( i was diagnosed in Dec 2016)   I just finished up a course of radiation therapy, it came back to the lung (again) and to a lymph node which prevented my having an abalation   Trying to keep me off chemo as long as possible   As much as I dont enjoy the drugs, i agree with you in thT i wouldnt have made it this far without them  

wishing you peace and comfort and a trial that works   

p

 

 

abita

PamRav said:

Thanks NewHere

For ALL your frank and insightful posts.  Your thoughts often help put my own in perspective   I'm on the same path as you, just  little earlier in the game ( i was diagnosed in Dec 2016)   I just finished up a course of radiation therapy, it came back to the lung (again) and to a lymph node which prevented my having an abalation   Trying to keep me off chemo as long as possible   As much as I dont enjoy the drugs, i agree with you in thT i wouldnt have made it this far without them  

wishing you peace and comfort and a trial that works   

p

 

 

Is the lymph node involvement

Is the lymph node involvement why no ablation? I have been wondering why no one has mentioned surgery or ablation for my lung mets, and I figured it was either the possible lymph node hot spot or that was also in liver.

PamRav

Hi Abita

Yep, the lymph node prevented my having the abalation.  

Knock on wood, my livers been ok during the past years scans 

Annabelle41415

NewHere said:

I am too stubborn stupid and slow Kim

I am not stopping until I have no choice.  When on chemo closer to bad days, it would sometimes take a bit more to get off the couch.  And I got a treadmill for the bad days.  Even then tough sometimes.  But most people cannot do what I am doing.  I refuse to quit.  I want to be alive as long as possible as long as the good days outweigh the bad days.  And right now, even when on chemo with the bad days on a three week cycle, I do not want to leave this world by any stretch and gladly take the s__t days because I have enough great ones every three weeks.  

 

Amazing

You are to be admired, that's for sure.  I'm glad that you continue to get up and move on a treadmill even when you feel yucky.  Just keep up your great attitude, as it's amazing what it has done for you.  Thanks for being such a great inspiration on this board.

Kim

NewHere

SandiaBuddy said:

Thanks

Thanks.  I try to keep the postings topical, as I realize that some are facing more challenges than me and sometimes I feel a bit guilty to be doing so well.  But if I make it to the three year mark this Spring, I will do a hiking post!

It Is Hard To Believe That We Can Feel Guilty

Just another weird part of the cancer.  I have the same feelings of guilt.  As of now I am practically dead man walking.  I have two sugeries, 3 rounds of radiation and about 36 rounds of chemotherapy in the last year.  I am good about forgetting the bad days.  So when I do what I do I feel guilty.  

As to topical portions of the posts, part of this all is also showing that people can go on despite all of this.  And I am not sure it is bad to show good parts of life or how some of the rough parts can be dealt with even when they really are bad.  Seeing people going on trips, hiking and the rest when they have gone through treatment and continuing to go through things may be a good thing now and again in all this.  It is easy to spiral down for any of us.  And tempering the bad with some good now and again may help people.

Like I said, I probably have my card punched.  But I am not stopping.  I could have easily folded shop two years ago.  And obviously not easy. But I would have missed out on many things.

I look forward to seeing your hiking pos and WHEN you make it to the 3 year mark, will be celebrating with you.

SandiaBuddy

NewHere said:

It Is Hard To Believe That We Can Feel Guilty

Just another weird part of the cancer.  I have the same feelings of guilt.  As of now I am practically dead man walking.  I have two sugeries, 3 rounds of radiation and about 36 rounds of chemotherapy in the last year.  I am good about forgetting the bad days.  So when I do what I do I feel guilty.  

As to topical portions of the posts, part of this all is also showing that people can go on despite all of this.  And I am not sure it is bad to show good parts of life or how some of the rough parts can be dealt with even when they really are bad.  Seeing people going on trips, hiking and the rest when they have gone through treatment and continuing to go through things may be a good thing now and again in all this.  It is easy to spiral down for any of us.  And tempering the bad with some good now and again may help people.

Like I said, I probably have my card punched.  But I am not stopping.  I could have easily folded shop two years ago.  And obviously not easy. But I would have missed out on many things.

I look forward to seeing your hiking pos and WHEN you make it to the 3 year mark, will be celebrating with you.

Fair enough

Fair enough, there are definately compromises that came with the "new normal,"  and perhaps attitude has some influence on what activities we continue to participate in.