Back to Work - Life is Good

Last week I came back to work part time for the first time in nearly 9 months. I'm only working about 25 hours a week to start, but it feels good to insert another sense of normalcy into my life. Who would've thought I'd say that about returning to work, but it's been great. By the time I get home each day, I'm pretty wiped out mentally. So, I've remedied that by napping for an hour or two. (Doctor's orders.) I figure, if my doctor can find a way to save me from cancer, I'd better listen to him.

My strength is still returning very slowly. Even with my fingers at times, it can be hard to do simple things, like open a bottle of Dasani water. I don't know what it is with those bottles, but those caps really kick my ass. I can play guitar a little better than I used to, but I'm still deeply struggling with it. Writing is tough too. My penmanship is very raw still and unrefined. (I used to have pretty good hand writing.) But I still need a lot of practice in getting it back. I have trouble buttoning my sleeves at times too.

It's really remarkable to realize what everyone takes for granted every day. Like, buttoning a shirt, opening a water bottle, or just taking a shower. Having had Leukemia and been through the treatment for it, it's made me realize what's important in my life and what's not important. I'm finding that things that used to irritate me don't so much any more. And every moment that passes is a gift and should be remembered as such. (I guess that's why they call it the present, right? Ha!)

It's Official

Yesterday we received good news from my doctor in Chicago...I'm still in remission, according to my last bone marrow biopsy. (This was the 100 day post-transplant biopsy.) My doctor told me that I'm not cured, but this is the best thing we could hope for considering what I've gone through. So, we were very happy to hear that news.

Also, I got the last bit of paperwork squared away with my insurance company and I'll be returning to work next Tuesday part-time to start. My doctor wants me to start slow, working 20 hours for the first week and then increasing by one hour every week after. Finally!

My ride is not over, but everything is looking up. I would like to take a moment and thank everyone for all the support we've gotten over the last 9 months. The response from friends and family has been unimaginably limitless. And my wife and I are very grateful for that. You know who you are, and we thank you from the bottom of our hearts.

Returning to Work

Yesterday I had my 100 day post-transplant bone marrow biopsy at the University of Chicago. I'm really beginning to hate that procedure. The one I had a few months back hurt like hell, and so did this one. My lower hip area will be sore for weeks. My doctors expect the results to come back good and clear of cancer. I cannot help but be a little concerned about hearing the results though. Providing the results come back clear, Dr. Artz has released me to return to work part-time. So, as a result, I've started communications with our Human Resources department to get the paper trail started. Even if it's only part-time at first, I'm very excited to finally be returning to work.

I still have my rash and it hasn't seem to have gotten any better. I saw the Dermatologist yesterday as well, and they are still relatively at a loss. They did however give it a name: "granuloma annulare." In other words, it's a mysterious allergic skin rash that usually clears up within 3 years. Nice. Meanwhile, the lesion areas are starting to peel and it itches like crazy. They prescribed me an ointment for it and I'm still taking Prednisone, but it still hasn't gotten better. But, in the grand scheme of things, I could be doing much worse.

Good News

This Wednesday's University of Chicago visit came with good news: a discussion on when I could possibly return to work. My doctor told me that typically with transplant patients, they'd rather wait at least 3 months before evaluating whether or not a person could return to work, because of Graft vs Host disease, drug reactions, or other immune system issues. In two weeks, I have another bone marrow biopsy scheduled. If that biopsy comes back good, and I'm not showing any other complications, I will be released to go back to work part-time. I'm excited!

I'm still battling a bad rash on my arms and legs. They took another skin biopsy today in hopes of determining the origin. All they can tell me so far is that it's an allergic reaction to 'something.' But the consistency of my rash has changed in the last week. It actually looks more like Ringworm. But they did test for that already, and that showed up negative.

Every time we've left the parking garage in Chicago, I've seen this Aston Martin parked in the same spot. I've been meaning to take a picture of the car for a while, and I finally did today. Just thought I'd share. She's beautiful.

Back to the Races

This past weekend I went up to Martin Michigan with my Dad to see good 'ole drag racing for the first time this year. He pushed me around all day in a wheelchair so I could see the sights and feel the noise. I thank him profusely for that. While we were there I caught up with a buddy 'o mine Jay, who actually works on a pit crew with Top Fuel Dragstser driver, Bruce Litton. Jay introduced my Dad and I to Bruce and his crew and we got to see the car up close and personal. Bruce and all of his crew were very humble and tremendously nice. Bruce even sat down at one point and said a prayer with me. Imagine that. The number one qualifier in the IHRA division sat down with me and prayed. I was floored. I didn't get any pictures with the crew, but I did get a few of the car.


This beast of of an engine puts out 8500 horsepower at its peak. 8500! I can't even imagine driving that. We learned a lot of about the technology that goes into these cars. They also use roughly 15 gallons of nitro-methane per pass, including the burnout. Unbelievable. But we had a great time with those guys and I really am thankful for them taking the time out of their busy schedules to talk to us.

On the homefront, things haven't changed much really. My stamina is coming back day by day. I don't get as winded as I used to doing smaller things around the house. That's one improvement I've noticed. My foot pain is still my biggest complaint by far. Last week, my doctors switched me over to a drug called Lyrica, in hopes of some relief. It has helped some, but it makes me very sleepy. However, I'm back on Predisone for my rash so that helps combat the sleepy urges.

Jonathon Returns...

I have no one to blame but myself for my mysterious lack of posts. I apologize to all my readers for that. In my small defense, sometimes there's not a lot of new information for me to post. And I don't want to make empty-hearted posts that just say 'yep, doing fine - see ya next time.' So I won't. But this isn't one of those posts so let's get on with it.

I'm beginning to suffer greatly from cabin fever. I know you're thinking, 'just now?' Yes...just now. There's only so many movies you can watch...only so many TV shows you can get caught up on...and the kitchen counters can only be wiped off so many times. I guess I'll really get worried if I get to be on a first-name basis with the mail lady.

My doctors think I'm doing fine. I won't say great, but fine is okay. Everyone kinda believes I should be progressing a little faster. I've been trying to walk down the street every day and I'm lifting weights to help with my upper body strength. My stamina is returning very slowly, like .02% each day. At least that's what it feels like. My biggest complaint right now is my foot pain. One of the drugs I'm on causes a burning sensation in my extremities. It's affecting my feet the worst. Most of the time they feel like they're on fire. Over the past few days, I've also developed a small rash on my arms and legs. It itches like crazy.

Last week, my wife and I were interviewed by NDWorks. For those that don't know what that is - it's one of Notre Dame's newspapers that they put out like every two months or something. Anyway, my wife and I will have an article in there this month or possibly next month talking about our battle with this disease. So be on the lookout for that.

I'll try and make my internet absence a little shorter in the future.

FINALLY - REMISSION!

Today on our trip to Chicago, we got great news.  Jonathon's leukemia is in complete remission!  That's the best news we could have hoped for.

Now to get to work on getting him stronger!  Thank you to everyone for your continued prayers.