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Well, Made It 5 Years. Hopefully Another Treatment Crops Up- Keep On Moving

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

It is 5 years since I was released from the hospital since my first surgery.  Then had chemo.  Then a lung met.  Then another surgery.  Then it came back again.  Failed Immunotherapy trial.  Then radiation and chemo.  Chemo stopped working.  Did not qualify for another trial.  No real chemo options of value - will go on one well I get closer to circling the drain officially, but not expected to really do anyting..

But still exercising and going through anything possible out there, including drugs off label.  Can't hurt because there is nothing else on the table right now.  With the winter I keep on getting upper respitory infections.  Or so I hope.  At this point it is difficult not to think it is the cancer.  But who knows.

But the weird part is that I am healthier than most people. Including non-cancer people.  Despite the fact that the cancer is going nuts in my lungs. They stopped counting a long time ago - I think we stopped counting at 72 Mets a year ago, which was not a complete count.  With a few big ones over 6cM.  My doctors do not get how I am doing what I am doing.  Or functioning.  So do everything you can to move.  It is often hard.  It is often difficult.  But it may help. 

So far February 60 miles Bike, 15 Miles Run, 4.5 Miles Swim.  The good part of this all?  Though my energy is low and I am still tired, feel so much better being off chemo.Laughing

 

abita's picture
abita
Posts: 776
Joined: Dec 2017

WOW. 72 lung mets and no chemo and you are okay?  I think you may have just pushed me to start back on cardio. Although, I will have to start at 5 minutes and build up. Good for you!

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

It stopped working ;)   The cardio is doing it, but at some point it may stop.  But if you can do ANY, even 5 minutes to start, it will really help.  So please do it if you can.  It can be slow.  And, as I have posted before, it can be tough.  There are some days I looks at my running shoes from my couch for an hour or two (more so when I was on chemo and it was closer to getting disconnected), and this is just to get to the treadmill I purchased because of this.

They have no idea how many mets.  I have gotten okay at reading my lung scans (my spine and PET not so much :) ).  One time about a year ago I started pointing them out to the doctor as we went through them.  I stopped at 60, but there were many more.  I asked my oncologist for a count this week, she asked me "really?" with an eye roll.  (she would, she is great, she also gets my sometimes strange humor in this all)

Being told the chemo stopped working a couple of months ago was a bit of a gut kick, but I am doing what I can.  I would be in terrible shape at this point without the exercise.  And I still hate running.  But when I do a run and do okay, I have to smile and raise a finger to cancer in my mind.  

Annabelle41415's picture
Annabelle41415
Posts: 6435
Joined: Feb 2009

So glad that you are able to get out and do all those activities.  You are right, get out there and move as much as you can.  Keep up the great attitude and workouts.

Kim

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

Right now I am about to run.  But it is cold and raining.  So may have to do the treadmill.  But that it is okay, means I can binge some movies :)

Canadian Sandy's picture
Canadian Sandy
Posts: 588
Joined: Jul 2016

Good luck New! You set a wonderful example for all of us.

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

I am working at this.  And have been able to help some people so far, and hopefully can help some more.  Giving some advice and showing what can be done when cancer shows up.  

Trubrit's picture
Trubrit
Posts: 5115
Joined: Jan 2013

I was looking back through the years on the forum, just yesterday. Looking to see when folks last posted. I read a couple of your older posts.   Time flies when you're having fun, eh.   

You continue to be an inspiration, and a beacon of hope.  

If chemo and surgery are not an option, you do what you have to.  I am glad that overall, you are not suffering the effects of those lung mets. I pray that your continued exercise will keep you from suffering, and I guess you never know - a miracle or something, down the road. 

You have my sword, my axe, my bow and all the other good vibes, prayers, juju and the like, that can float through across this great land to you. 

Tru

 

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

I often think of the Lion and Winter MArie.  He passed away about two months after I started here.  I remember how devestated I was when I saw the news.  And how the writing changed in his posts over the last couple of weeks.  

I have been lucky in all this.  (How messed up is cancer, I have it everywhere and the odds are pretty stacked right now, but still considering myself lucky).  So I also feel I need to keep on doing whatever I can to keep on going as long as I can.  Even with all of this, I still do not get the feeling I am nearing the end.  Practically, I know where I am.  And there are times when I think about the probable time-frames.  But most of the time, I do not pay much attention to all that.  Though I should focus on a couple of things now a bit to take care of.  Yuck.

I keep on thinking that when I have my scan next month that some of the alternate things I am pursuing may kick in.  And I will post one of those posts where eveyrone thinks I am off my rocker in thinking that it worked ;)  Though it may be a scan in four months.  The routines I am trying people say usually takes 8-12 weeks to kick in.  I will be a bit short.  Plus it would be 3 months from last chemo, so could also be too short a time from that end.  But I will be posting a heck year if it is stable.  Every month of stable, means one month closer to cure.

 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1049
Joined: Apr 2017

That's inspirational.  Thank you for your post.

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

As I mentioned, I love seeing you posts and the continuing changing avatars of wonderful landscapes.  It is important for people to know that there are so many things possible even as Stage III or IV.  I think anything we can do which helps physically or emotionally stacks the odds a bit to continue to a next breakthrough.  In the bizzaro world of cancer, I have actually been pretty happy overall the last 5 years with the perspective of going through this has on life in general.  

abrub's picture
abrub
Posts: 2130
Joined: Mar 2010

Just a note to say that I find the support you've given me as priceless!  And I know you are in excellent hands.  Let me know if there is anything I can do for you.  (I'm back to MSK Apr. 22-24)

Alice

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

As of now I will be out of town on your next MSK visit.  Doing a race with some friends then :)  Eventually we will meet up.  I had not been to the city MSK in awhile, but was in for the testing and if I got in, I would be there fairly often.  

PamRav's picture
PamRav
Posts: 272
Joined: Jan 2017

you are such an inspiration on how to deal with the hand you're  (we are ) dealt with bravery, grace and humor. 
Thank you for sharing.   
wishing you thousands of miles more 

p

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

It is truly amazing to see all the people here and how strong they are going through this.  As I tell people, it is not that I wanted cancer, but once I had it there have been so many things that are positive in the world and people that I may not have seen otherwise.  Not sure if that is the best way to explain it, but hope the idea comes across.

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