Author Topic: Touring after Chemotherapy  (Read 3310 times)

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Offline aggie

Touring after Chemotherapy
« on: January 23, 2021, 09:29:15 am »
Has anyone done a tour after chemotherapy?  How long were you off your bike?  How long after chemo were you able to tour?  Do you lose much muscle mass during chemo?  Did you take any precautions as you began to ride after chemo?

Offline jamawani

Re: Touring after Chemotherapy
« Reply #1 on: January 23, 2021, 02:03:07 pm »
Aggie -

I've gotten two "Nothing we can do" letters over the past decade - for HCV/cirrhosis rather than cancer. Although these are different conditions with differing treatments, there are some important similarities - including brutal drug regimens, muscle loss, exhaustion, and often loss of confidence. At one point I was diagnosed Stage IV - the nice letter has it in bold, red ink.

I am one of the fortunate ones. The first treatment with a fast-tracked set of drugs failed with the treatment now known to have had serious, long-term side effects. There was about four years between the first and second treatments - the latter was successful. They don't use the term "remission" but they also don't use "cured" either.

Within a week of starting the first treatment, everything in my body was different. And my days varied between being hit by a car, hit by a bus, and hit by a train. Not only did I experience muscle loss and weight gain - whadda combo! - but I also had nerve demyelination which would make me think on mild days that I was peeing down my legs and on bad days like my legs were on fire.

But I chose not to stop cycling.
Doesn't make me any better or smarter or tougher than anyone else. Maybe just more stubborn.

I kept riding locally. Even when it burned.
And I did three tours between the first and second treatments.

The first was just a 10-day loop in Grand Teton and Yellowstone parks. For me that is ridiculously little, but it wasn't easy. Between being out of shape and weak I had to huff and puff and - yes - I was embarrassed when I shouldn't have been. But it was still some time out touring and, definitely, healing. The second was a trip halfway across the country -  from the coast of Oregon back to Wyoming. Actually, I had planned to go all the way, but realized that the tank was past empty. Finally, in 2016, I did ride across the U.S. - not a terribly hard route, but 3400 miles.

When I showed up for my second treatment in the fall of 2016, the specialist said that she had not seen anyone start treatment as healthy as I was, but admitted that my tests did indicate that I was Stage IV. Again, I may have simply been fortunate. But I also do believe that the touring helped both my physical and mental health.

I would urge you to do as much or as little cycling as you are comfortable with. Maybe a teech past the comfort zone? I would also hope that you are not as self-conscious as I was. When I was climbing up White Pass in Washington back in 2016 I had to stop 50 times, at least. And it's not that tough of a climb. I found myself thinking, "They'll see me stopping all the time." But then I realized that, whether they were going east or west, they'd only see me once. And anyhoo, why should it matter?

Wishing you all the best. - Jama
« Last Edit: January 23, 2021, 02:06:09 pm by jamawani »

Offline aggie

Re: Touring after Chemotherapy
« Reply #2 on: April 09, 2021, 04:36:46 pm »

Well, I've completed my last round of chemo 2 days before my birthday (some birthday present).  Fortunately I went to a lymphoma specialist for the treatment.  I was diagnosed with follicular lymphoma grade 3B (most aggressive). The other oncologist wanted to do 6 rounds of chemo but since I was in "complete remission" after 2 rounds the specialist said I only needed 2 more.  One of the chemicals is known to have side effects on the heart.  I was told that since I was is good condition and the ECG showed good function and I only had 4 rounds there shouldn't be any damage.  Only time will tell.

Definitely been a roller coaster of an experience.  I also have muscle loss and weight gain.  I've had the same feelings as you of being hit by a bus, truck, train, or just a pile of s--t after each round of chemo.  The worst part though is the waves of nausea when I try to do any activity.  This pretty much limited my attempts to hop on a bike.  I did one short ride (6 mi) and I was exhausted afterwards.  My white cell and red blood cell counts are extremely low after each round.  The low RBC makes it difficult to to any activity for more than a few minutes before fatigue sets in.  Like you I am a little embarrassed by my lack of fitness now.  Good news is weather is now good enough so I can hop on the bike pretty much any time during the day.  As soon as this episode of nausea passes I will be setting out on some small rides around the neighborhood.   Then longer rides to rebuild the stamina.

Watching some youtube videos about people touring has kept my spirits up and looking forward to getting out there again.  I bought some new stuff I want to give a try before my next ride to see if they make the bike a little more comfortable. 

Offline driftlessregion

Re: Touring after Chemotherapy
« Reply #3 on: April 10, 2021, 06:34:43 pm »
Good luck to  you. It will be hard but doable. The fact is regardless of chemo we lose half of our conditioning every two weeks off the bike.

Offline jamawani

Re: Touring after Chemotherapy
« Reply #4 on: April 10, 2021, 10:52:16 pm »
Aggie -

I hear you.
And I do hope to understand you.

I kinda like your comment about the birthday present.
I got tired of all the long faces and serious discussions.
I had a friend from out of state who was trying to call for a few weeks.
When she finally did reach me she said, "Thank God ... I thought you were dead."
We both laughed ourselves silly. Sometimes you just have to do that.

And, yes, I've had side effects from the side effects ...
Not to mention the famous doctor's line, "Well, it could be a lot of things."
Gee, thanks Bubba. (Somehow I think docs wouldn't like the nickname "Bubba".)

My WBCs and RBCs were awful, too.
One time a lab tech chased me down the hall after she saw the numbers.
She said, "Don't you think you should sit down for a while?"
I reassured her that - yes - I knew the numbers were awful.

I wish you all the best now that you have completed chemo.
There's no timetable - some things will be quick, others come slower.
But you will begin to notice changes .... and go, "Wow!"
As for cycling, do what works for you - just for you, nobody else.


Offline staehpj1

Re: Touring after Chemotherapy
« Reply #5 on: April 11, 2021, 07:28:16 am »
I wish you a speedy recovery.  Take it easy and build that fitness at a steady rate.

The good news is that touring can be done without being at a great fitness level.  So it is possible to start fairly early in the process of building fitness if you are willing to take it easy.  I have no experience with chemo though so I don't have any idea how that plays into the equation, but I have toured after periods of no or very little conditioning.  It is hard, but isn't as hard as starting out as someone who has never cycled.

I have met a few riders who were doing long tours after chemo.  They were doing well, but didn't share the details of their recovery.  One older guy ended a Trans America tour mid way due to a cancer diagnosis and came back to finish a year after surgery and chemo.  I forget the details, but he seemed to be doing great when we met him.

Offline hikerjer

Re: Touring after Chemotherapy
« Reply #6 on: April 11, 2021, 04:38:06 pm »
Fortunately, I cannot personally relate to your situationn.  However, I admire your determinatin and guts.  Go for it and be an inspriation to the rest of us. I wish you all the best.

Offline Westinghouse

Re: Touring after Chemotherapy
« Reply #7 on: April 13, 2021, 08:06:41 am »
Jamawani, it seems like you are a survivor first, and a cyclist second.

Offline jamawani

Re: Touring after Chemotherapy
« Reply #8 on: April 13, 2021, 12:33:51 pm »
Nope, Westy -
Ya got it backwards.
Cycling always comes first.
Survival is just a fringe benefit.