When I shared my sarcoidosis story with viewers, cycling was a part of it.

My face was becoming so puffy from the drugs used to treat sarcoidosis that I felt like I had to explain it to viewers of my evening newscasts.

Many of them had already begun contacting me via email and Facebook, expressing genuine concern.

So I know it wasn’t all in my head. People really were noticing.

I shared many of those viewer comments with my co-anchor, Lindsey Ward, who asked if maybe it wasn’t time to do a story on my condition.

She offered to report it and I agreed.

The story hit home for many people

While I anticipated being relieved to finally tell people why I looked so different, I did not anticipate the outpouring of responses. Two groups in particular contacted me:

Well wishers…

… and those with similar illnesses.

I’m humbled and gratified by the hundreds of people who reached out on Facebook, e-mail, WSLS.com — you name it — to say they are thinking of me and praying for my recovery.

Thank you.

I just can’t say it enough.

Then there are a significant number of folks who reached out to thank me for shining a light on sarcoidosis and other auto-immune diseases.

So many people feel alone in fighting sarcoidosis. I can’t even tell you how many people said they thought they were the only ones fighting this monster.

And many if not most of those people have worse symptoms than me.

It’s attacked their lungs, their hearts and their muscles. Sarcoidosis had plagued them, in some cases for decades. A few people even told of family members who had died from the disease.

It’s scary stuff.

My wife told me to stop reading it. It was depressing me.

But I couldn’t stop. I tried to respond with a personal note to all of them.

I think that’s what people deserve.

The Cycling Part

As I wrote in a previous post, cycling is my gauge for how my body is dealing with sarcoidosis and the chemo and prednisone used to treat it.

When Lindsey asked me about how we might approach the story I said it was her call, but it had to include cycling.

It’s the one outdoor activity I can still do, even with the numbness and certain lack of coordination/balance that comes with it — that still defines me.

If I get to a point where I can’t ride, I will need some serious psychological help!

As it is, I’m pretty much down to riding on the flat, Roanoke River Greenway.

My normal group of friends and fellow riders is out doing 50 and 75 mile rides on weekends in the beautiful countryside here in Virginia’s Blue Ridge, while I’m satisfied to log 12-15 miles of easy terrain along the river.

I would normally be blogging about those longer rides this time of year. Click here for lots of options all over the United States!

So be it. I’m still riding and still enjoying it.

Cycling on Chemo and Prednisone

To be clear, these rides are not hard. It’s no struggle for me as long as the road is flat.

But, if you add in a bit of climbing, I can’t catch my breath to save my life. Any significant hill jacks my heart rate to 90-percent plus.

The doctors tell me to stay as fit and active as I can.

But, this is no time for interval training and hill repeats.

They say the chemo (cytoxan) is limiting my ability to get oxygen into my blood. My stomach is so swollen from the prednisone that it may also be restricting my diaphragm from moving normally.

In other words, I can’t get a full breath into my lungs.

Great.

Moving Forward

The good folks at the Foundation for Sarcoidosis Research or FSR picked up my story and redistributed it to their large e-mail list. As a result, I’ve heard from people not just in Virginia, but all over the United States.

All wishing me well and sharing their own stories.

I’m hoping to work with FSR on ways I can help them tell the story of this illness and if possible, assist with fundraising and awareness.

Sarcoidosis is uncommon enough that it is not exactly where pharmaceutical researchers are throwing research dollars.

There are not enough of us with the illness.

There’s no money in seeking a cure, when so few people have the affliction.

A Cycling Podcast

Lee Kreider, producer of the Ohio RAAM Show — which chronicles the efforts of those crazy cyclists who race their bikes across America. contacted me. (RAAM = Race Across America)

Lee also has sarcoidosis.

He was an ultra rider who was forced to abandon what he loves because sarcoidosis messed up his lungs.

He and I will be sharing our stories in an upcoming podcast.

A quick update on my condition.

I recently returned from a visit to the Cleveland Clinic Sarcoidosis Center where I met with my doctors and had an MRI.

The MRI showed improvement in my condition!

That means I haven’t been going through all the side effects of these drugs for nothing.

A breathing test and chest x-ray showed no signs that the sarcoidosis was spreading.

The doctors have ordered me to have chemo (cytoxan) treatments every three weeks instead of four — and they are reducing my dose of prednisone a bit faster than before.

I’ll let you know how it goes — and how it affects my riding!