Funny Story from new member

[Patrickreed]

New member here, thought I would share a funny story.

I started getting Cytoxan infusions in March 2013 when I was diagnosed. I would go the Cancer Center at St. Francis in Hartford, CT monthly as an outpatient. I did this for about 8 months.

Being a rare disease, most people in the Cancer Center are there for cancer not Wegner's, and most were much more ill than myself.


So I have one of my appointments on a nice summer day, and had been on the Harley all day. Not wanting to stop riding, I simply rode to my appointment.

Now, I didn't want to be the guy in a parking garage on a Harley.

St Francis also has free Valet parking with a separate parking lot right next to the Cancer Center.

So being a qualifying patient that day, I pull right up to the parking gate at the Cancer Center and wait to ask for someone to open the gate for me.

An annoyed parking attendant comes quickly over and states "Sir, this is Cancer Center parking only!"

I simply reply, "I know."

A still annoyed parking attendant replies, "This parking lot is for Cancer Center patients only."

I reply, "Yea, I know."

I now see the light bulb illuminated over his head as he replies, "Ooooooh. Okay let me open the gate for you."


I apologized for the confusion, especially because I anticipated it and did it anyways. He confirmed that I was the first patient on a bike he had ever seen there which I assumed.


I don't know if that was a jerk thing to do but it gave me something to laugh to myself about during my treatment that day. I have to have some kind of fun while I'm dealing with all of this.

[me2]

That is a good story Patrickreed. "A funny thing happened on my way to chemo today..." We don't get too many of those. We do like funny stories though- thanks
And welcome to the club. I ride a moped- it won't make the 80 miles I have to drive on the free way for infusions. I could end up with a funny story though if I tried it...

The WG forum- we come for the WG but we stay for the funny stories...

[renidrag]

Good story Patrick. I used to ride but had to give it up due to balance issues and Neuropathy in feet. Quick question, how long are you going to be on cyclo?
Dale

[Patrickreed]

Thanks for the welcome me2. I wouldn't try that trip on a moped either lol. In fact I wouldn't do it on my bike even because the Cytoxan infusions always drained my energy for whatever reason.

I was without a bike for 2 seasons and after I got slammed with kidney failure from the WG, I swore I'd never get on a bike again because after aggressive treatment I was so happy to be alive and no longer suffering. Two months later I financed my Harley. I decided I had the wrong idea wanting to live in a bubble after what I went through. I think I made the right choice.

Another funny story-

I'm going to start from the beginning so bear with me.....

I believe it was march 13, 2013 that I was admitted with acute renal failure. I had no idea what was going on. I had never even been a patient in a hospital. I didn't like blood tests and almost never went to a Dr. unless I had to. Besides being in my early 20's who needs a Dr?

Thinking I was just fatigued, I ignored my symptoms, and was in denial. After two weeks I realized I was sleeping on my desk at work, going home and going to bed at 5pm with the chills and severe back discomfort. Finally at the request of a concerned co-worker (an ex EMT who knew there was a bigger picture) I went to get a blood test done. Later I got a call at work saying my Kidneys had failed. I couldn't believe it. I'm 22 with no previous health issues ever. This must be a mistake. It was no mistake. Within a day I went to a hospital and stayed until late March. They gave me high dose steroids, I did dialysis twice, plasmapheresis 5 times, a kidney biopsy that confirmed the WG, 3 blood transfusions, Cytoxan, and did more scans than a Xerox machine. They also found a small abscess in my right lung, and said it was minor and couldn't really be treated but they would want to keep an eye on it.

Now getting to the point -

Two weeks after I was discharged, I started having some upper back pain when I would lied down. I ignored it. It got worse. I figured I was just sore and continued to ignore it. After a week I realized the pain must have been resonating from my lung. Terrified of "getting locked up in the joint" again, I ignorantly ignored it still.

Then while visiting my Uncle's campground, I realized the pain was quite severe no matter what position I was in. I knew I would have to go ask for help. Still, I had arrived at the campground and decided to at least visit my family. (Being a family owned campground, it was common for me to go there just to visit family)

They were having a cookout with friends. I was partway through a meal when I the pain was too great, and I informed my family that I would have to leave soon and get checked out.


The "funny" part -

I waited another hour to go to the hospital. Despite the agonizing pain, I endured another hour suffering. I refused to leave until I had some delicious venison chili. The next week was all hospital food. Not the brightest thing, but all I could think of was if this was my time I was leaving with venison chili in my stomach.

This ended up being the same lung abscess I started with. The Dr. suspects the chemo opened me up to infection, causing the abscess to become the size of a tennis ball and full of infected fluid.

As of today I have fully recovered and show no abscess at all in my scans. I look back and laugh at how much I love good food.

[Patrickreed]

Renidrag -

I stopped the cyclo after 8 months. I only did 6 monthly infusions, with a break in between to allow my lung to heal. No further infusions are foreseeable. *knock on wood*

I largely have an advantage being so young, my body is a little more able to handle the aggressive treatment and has responded well.

I am now on maintenance meds - Methotrexate, 12.5 mg prednisone daily (down from 60mg in March), Lisiniprol, and Folic Acid.

Dr. says I may never go below 5mg of Pred, he sees a lot of WG flare ups after patients go below 5 or off of the Prednisone.

[MikeG-2012]

Loved the story Patrick! From the files of "...riding the motorcycle to chemo treatments--PRICELESS!" :thumbup:

I HOPE to have more riding this year than last year. I only put 150 miles on the clock last year, as opposed to the 4k that I usually put on COMMUTING to the college where I work. Seeing my poor BMW parked in the garage, directly in front of my car, is a sad, depressing sight!

THINK SPRING!

[Pete]

And I'm looking forward to getting the Boxster out when the weather breaks here in Ohio. Planning on one or two longer trips in it this summer - out to Illinois to visit a former colleague and perhaps to the Tail of the Dragon in Tennessee (a nice twisty road).

[MikeG-2012]

And I'm looking forward to getting the Boxster out when the weather breaks here in Ohio. Planning on one or two longer trips in it this summer - out to Illinois to visit a former colleague and perhaps to the Tail of the Dragon in Tennessee (a nice twisty road).

Tail of the Dragon: 368 curves in 11 miles! Haven't been there YET, but its on my bucket list to go on the beemer!

[mishb]

Hi Patrick and welcome to the forum.

I'm sorry I haven't got a motorbike story to share but I'm glad that you can still ride :thumbsup:

Me2 is correct, not only do we discuss WG but we also love a great laugh - sometimes we need it.


All the best to you and keep sharing the fun

[Alysia]

welcome Patrick :biggrin1:
as long as you can laugh, you are going to be just fine :thumbup:
maybe we need a thread of laughing about situations and funny stories considering our wg....
being at the forum makes me laugh so much in my "weggie life", and then there are the weggies jokes, that only a weggie can understand....

[Lilly]

What a Great story! I was just getting into motorcycles, and my husband and I had a Honda Shadow, and rode a lot, we had a great group of friends and went on a couple trips to Clarksdale Ms. and Nashville.....Awsome music history and also black history, as we stayed in the "Shack Up Inn" in Clarksdale. Fantastic Experience! I was divorced in 2010, and since I dont Drive motorcycles, I always Ride, I am always hoping to find a friend with a motorcycle!!!! Still holding on to my helmet and leathers!!!LOL!!! I miss it terribly. But I think if you enjoy motorcycles, it is so relaxing and good for the soul and mind and body. It is great that you are able to enjoy that! Just because we are fighting a disease, does not mean our life is over! Driving up on that Harley was a way of saying, "just a quick stop from my ride, Ill be back soon to finish!" Love, Love, Love it!!!!! :))

[Lilly]

Ha! You are a really funny guy! I Love your attitude. Im so glad you are doing good now,,,,That abscess could have been bad if it had broken open. I worked in hospitals for years, and in CT scan, and did abscess drainages, so I know what can happen. But no need to think about that now, Someone is looking out for you! Keep listening to your body! It will tell you what to do, and I hope you are not as stubborn as you started out being! Glad ur doing good. You just gotta do what you gotta do!!! Love your stories...Take it easy~

[Patrickreed]

What a Great story! I was just getting into motorcycles, and my husband and I had a Honda Shadow, and rode a lot, we had a great group of friends and went on a couple trips to Clarksdale Ms. and Nashville.....Awsome music history and also black history, as we stayed in the "Shack Up Inn" in Clarksdale. Fantastic Experience! I was divorced in 2010, and since I dont Drive motorcycles, I always Ride, I am always hoping to find a friend with a motorcycle!!!! Still holding on to my helmet and leathers!!!LOL!!! I miss it terribly. But I think if you enjoy motorcycles, it is so relaxing and good for the soul and mind and body. It is great that you are able to enjoy that! Just because we are fighting a disease, does not mean our life is over! Driving up on that Harley was a way of saying, "just a quick stop from my ride, Ill be back soon to finish!" Love, Love, Love it!!!!! :))

Lilly,

I know what you mean about missing it. I'm having a hard time just waiting for the snow to melt here in CT so I can ride again. You ever consider riding a bike yourself? I'm always looking for people to ride with but sometimes riding alone can be relaxing. Quite a few times this past summer I worked 6am-6pm then rode the bike 100+ miles and came home and went to bed. Much better than putting my feet up on the coffee table and wasting away. I'll take any excuse to go for quick rides too. Like chemo infusions LOL but I'll find myself visiting a lot of family too.

[Allisonquast]

We hear ya Mike, it's going to be another three months before we can get the bike out. Funny stories Patrick, what a great attitude.

[Debbie C]

I can't wait for the weather to change either,like everyone else.My boyfriend has 3 harleys and a chopper he put together for a show bike. I love to ride. That Dragan Tail sounds like a great ride,where is that at in Tennessee ? I will be going to bike week in Daytona in a few weeks,looking foward to some Fl. sunshine.

[Allisonquast]

I don't drive either, I just ride on the back of Colin's but I love it. I just veg out, smell everything and enjoy the view. Sometimes he gets mad because I disconnect our communication so I can just be quiet! It is the only time I think I truly relax, nothing to do but enjoy our beautiful world! I never thought I'd like it as much, I thought I'd be nervous.
I hope he is well enough to get lots of tides in, he had to cancel his big ride with his buddies last June as he was diagnosed with Wegs. :mad1:

[Pete]

That Dragan Tail sounds like a great ride,where is that at in Tennessee ?

Go south out of Knoxville on US 129, which becomes the Tail of the Dragon north of Robbinsville, NC.