Cytoxan is no picnic.

And you won’t ride very well either.

As of this writing, doctors are fighting my sarcoidosis with monthly doses of the chemotherapy drug Cytoxan or cyclophosphamide.

Oh, and lots of prednisone.

Neither one is good for life or cycling.

Great.

I found the post above in my Facebook feed, “Congratulations. It’s not cancer. It’s Sarcoidosis. You have an incurable chronic illness. Now hold still while I fill you full of steroids and chemo.”

I knew they were talking to me.

As of this writing, I’m taking 50 mg of prednisone every day — down from 80 three months ago — and receiving 1 gram of cytoxan via iv every four weeks.

I’ve had two doses of the cytoxan (chemo) so far with another scheduled for next week.

Doctors don’t know how many doses of the chemo I’ll need.

Or if it will even work.

At a minimum, it will be most of 2019.

I recently did an interview with my own TV station, WSLS in which I opened up about my fight with sarc. Click Here to see the story, which is also being shared by FSR the Foundation for Sarcoidosis Research.

Quickly on sarcoidosis and John

If you have been following my blog about cycling with sarcoidosis, you may already know that I have a rare form of the illness that has created a cluster of globules on my spinal cord at the back of my neck. (c-6 for those of you counting vertebrae.) That cluster is blocking signals from my brain to the lower part of my body.

Right now it’s numbness in my hands, and from my chest to my feet.

Physically, it makes me a bit awkward. I don’t have the coordination to run – or hop from rock to rock while fly fishing. Getting out of the car can be a pain. It prevents or slows a bunch of everyday activities.

And it never goes away.

That sucks — but if the blockage gets bigger — well, I don’t want to go there, but it’s a lot worse.

Put it this way — I won’t be writing about cycling anymore.

But so far, cycling has been my savior. Something I can do easily if not well.

The Flare

Six months ago I experienced what doctors call a “flare.”

That’s when everything suddenly gets worse.

It was scary. Three days in the hospital. The inflammation on my spine spread from my neck to the middle of my back.

In addition to the pain, it made me walk like a drunk. There were other side effects I won’t go into here.

The inflammation went away, thanks to the hospital treatment, but left a bunch of new numbness behind. That will probably never change.

Enter the cytoxan.

The first line of defense for the flare was high doses of prednisone — but the docs felt it was time to to press my body’s “reset” button. That’s what chemo does. It goes into your bone marrow and tells your system to stop being so stinkin’ autoimmune.

In other words it says, — “Stop creating the conditions causing the sarcoidosis.”

It’s a more aggressive therapy than I was receiving during the two years since diagnosis.

Cycling after chemo (cytoxan)

So far, I haven’t noticed all the terrible aspects of daily life people seem to experience with chemo. I’m told my hair will thin, but not fall out completely.

I’ve taken anti-nausea pills that actually work.

I still go to work every day, but other than feeling a bit blah for a couple of days after treatment, it hasn’t changed my life.

Until I get on the bike.

For me the bike is like par on a golf course. It’s a standard.

The bicycle gives me a reference point. I know how fast I ride under normal conditions. I know my approximate heart rate on certain hills. I know I’m supposed to be a bit faster than my wife, Mary.

So if those things aren’t happening, I can attribute it to sarcoidosis or the side effects from the drugs.

Using the golf analogy, right now my cycling is at best a triple bogey.

It’s hard to accept being slow

Until recently no one ever passed me when riding on the Greenway. It was always the other way around.

At least four people blew by me last night.

I used to attack the hills on my beloved Bandy loop. Now I survive them — and won’t even attempt this course the first week after a chemo treatment. I doubt I could complete the 20-miler.

The Strava link above shows my most recent effort. 12.2 miles per hour average. On a good night before the flare that would have been 15-plus.

If you don’t ride, those numbers won’t mean much.

If you do, you know that’s a huge difference.

As I wrote in my post about Cycling the Capital Trail, four days after chemo, on a basically flat, paved trail, I could not hold Mary’s wheel.

Not only is this worse than par, it feels like I’m hitting the ball in the water over and over.

Trying to understand

Medically, I can’t explain what happens when all of these chemicals invade one’s system.

I know that I’ve gained 15-20-pounds even though I’ve been watching my diet, working out with a strength and conditioning coach at Lost Boys Strength and Conditioning – and yes, riding.

But it’s not just the extra body weight.

It’s like there is no oomph.

Stand up and sprint? Forget it.

Push a bit harder to get up that hill? Ha Ha! If I breathe any harder I’ll cough up a lung.

Chase the wheel in front of me? Just don’t have the energy – physically or mentally.

If the pedals are still going around, it’s a win. Sarc doesn’t even want me on the bike.

Every completed ride is one I stole from sarc — and chemo and steroids.

What People with Sarcoidosis say

“Scans, tests, and examinations are of course crucial in the treatment, but the well-being and the quality of life determine how much I suffer from sarcoidosis. And that is the most important thing.” 

If you dig into the study that was revealed in the Facebook post at the top of this blog, and scroll down a bit, you’ll come to the quote above.

In the survey of sarc patients, they all sense the same frustrations in their personal lives that I do.

This illness and just as often, its treatment get in the way. Whether it’s cycling (for me) or whatever is central to the lives of the 1,800 respondents to the survey, the most important issues were quality of life and functionality.

In other words, the illness is always an issue, either its effects or the side effects from the drugs.

People want their doctors to understand that their life has been up-ended. They want healthcare providers to treat them as people — not just the clinical aspects of sarc — like monitoring blood tests or MRI’s.

Great, you’ve got my blood markers where they are supposed to be. Now can you make it so I can take a walk?

Patients just want the situation to change.

Trying to keep sarcoidosis in perspective

Don’t get me wrong — I understand that there are a lot of people with worse diseases and whose health is more serious than mine.

I’m reminded every time I walk in for a doctor’s appointment. There are the people in wheelchairs and pushing walkers.

The folks in the chairs beside me when I receive the chemo are likely facing much worse demons.

My point is not that my life is so bad because my cycling has suffered. I’m writing this to share my story — and for whatever reason cycling seems like the best vehicle with which to do that.

Think of it like this. There are those times you feel a bit off, but you’re not sure if you’re sick. So you take your temperature. If you have a fever, you’re sick.

The numbers on my Garmin or Strava are like that thermometer. When they are off it confirms the way I’m feeling.

The bike is a thermometer for my life.

And, I seem best able to channel my thoughts through cycling. It makes it easier for me to understand where I am physically.

And to describe it to people.

If I get tired going up the stairs, or lack the energy to take on a project in the yard, I know from the Tuesday night ride that it’s not just an excuse.

There really is something wrong.

If I can no longer climb hills that once constituted everyday rides, I probably shouldn’t try to cut down the dead tree in the back yard.

Maybe it’s okay to watch Netflix instead of going for a hike.

The waiting is the hardest part

During these months that I’m getting chemo treatments, and while the docs slowly reduce the dosage of prednisone, it’s like being in no man’s land.

You don’t know if it will work. You’re waiting for the treatment cycle to be over. You’re grateful to have doctors, frustrated that they don’t know more about the disease, mad about how you feel and hopeful that one day you’ll return to normal.

All at once.

One of the best ways to cope is still to ride the bike.

And to be ok with the speed, no matter how slow it is.