I wanted to start off tonight by thanking all of you out there who have been sending your all of your thoughts and prayers my way. I really wish I could respond to each and every one of you on an individual basis, but there are just so many of you that it would take me forever to do it that way. So I apologize for not addressing each of you but I will try to do my best.
The past few weeks have been pretty uneventful from a medical standpoint, which is good and bad all kind of at the same time. The DLI that I received two weeks ago, as I mentioned in my last journal entry, was done to hopefully cause something called graft versus leukemia effect. The graft versus leukemia effect is essentially the infused lympocytes from my transplant donor, my sister Lindsey, attacking any of the leukemia blasts in my bone marrow. Earlier I stated that I can only get the graft versus leukemia effect by contracting all out graft versus host disease – the darker of the two sides of effects from the DLI. This is where the lymphocytes attack every other cell system in my body. I learned on Monday, at my doctor’s appointment, that I don’t necessarily need GVHD to get the graft versus leukemia effect. The thing is, the chance that I will get the graft versus leukemia effect is substantially higher if I do have some GVHD. The fact that I haven’t had any GVHD gives me pretty good reason to believe that there has been very little, if any, graft versus leukemia effect. Because of that, chemotherapy has been tentatively scheduled for February 24th.
This brings me to my next topic: chemotherapy. As I said in my last entry, one of the chemotherapies that I took in 2009, and helped put me into remission then, was pulled off of the market by the FDA because of the high failure rate in patients that it was used on. I was one of the few patients where it did work. Given that, Froedtert Hospital worked very hard with the FDA and got approval from the FDA to give me the drug Mylotarg specifically just for my personal use. Now that we have gotten past the FDA to get the drug, the last steps are to get the approval from the Board at Froedtert to allow the use of the drug to be used for my treatment. Once we get that, which we are very certain is going to happen, I will have to fill out all kinds of paperwork assuming 100% of the risk onto myself.
A bone marrow biopsy is scheduled in two weeks. After we get back the results of that biopsy, the next plan of attack will be executed. The initial plan is to use two drugs: azacitadine and mylotarg. Last time I used decitabine and mylotarg. Hopefully, it will work again as it did last time. Azacitidine is supposedly a very close sister to the chemotherapy drug decitabine. I’ll need the results from the bone marrow biopsy before we can really make any concrete decisions as far as what the treatment will exactly be. That’s why I said the chemotherapy was tentatively planned for the 24th. I’m guessing the chemo will be administered as outpatient, barring that I don’t have any severe complications. I’m currently still working at Harley-Davidson on a full-time basis and am planning to go out on short-term disability for the duration of the treatment and recovery as this will be quite a bit more severe than the DLI.
Overall, I still feel pretty good: mentally, physically, and emotionally. Of course, at times, I have my moments. For the most part, I think I am hanging in there pretty well. That is probably largely in part because I still feel somewhat normal. Work can get a bit stressful every now and then. My doctor’s feeling on that is he’d like me to stay as stress free as possible over the coming months. Meaning that I think he would like to see me take leave from work at least until I am back in remission. I’m still juggling over my thoughts about whether I should keep working or really focus 100% on getting solid rest and getting myself as prepared as possible for what is to come.
On a lighter note, I was able to make it over to the Milwaukee Brewers 2011 On-Deck event at the Frontier Airlines Conference Center. It is basically an all-day long event for the fans to come and meet and get autographs from their favorite Brewer players. There are also all kinds of kids activities and memorabilia vendors set up all throughout the center. It was a great day! I got to meet Rickie, Shawn Marcum, and John Axford. I ran into a good friend of mine, Larry Hisle (Brewers player from ’78-’82). He was there giving a hitting clinic teaching tips and techniques for all of those interested in listening. After his clinic he stopped over to chat for 10-15 minutes. It was great seeing him again.
While I was waiting in the Shawn Marcum line for an autograph, Ryan Braun was walking nearby sort of backstage. He came over to sign a couple of autographs for some young kids that I was standing right next to. Once he was finishing signing for the kids, I asked if he would by chance sign the Braun jersey that I was wearing…and he did! Also, as I was waiting in line to get an autograph from our relatively new closer John Axford, I ran into some friends that I met in 2009 through Larry Hisle. I met both of them when Wayne, one of the people, had invited Larry and I to watch a Brewer game from his luxury box that summer. We actually went last summer as well. Anyway, we started talking and he asked me how my health had been going. Of course it came up and he gave me his deepest sympathies and said that there was someone else that I had met during those two games that he would like for me to talk to as well that was also at the On-Deck event. Her name is Susan. Twenty minutes later, Susan found me and we had a really nice conversation. She gave me a lot of positive reinforcement and referred me to an oncologist at UW-Madison that I will be inquiring about any other possibilities if I should need them. We said our good byes and rejoined the line to meet John Axford and hopefully get a signed baseball. While I was waiting in line, Susan walked past me and handed off (like a football) into my arms a full game-worm uniform of John Axford as a gift. I thanked her from the bottom of my heart as this was one of the neatest things someone has done for me. I’m a diehard fan and appreciated it greatly. Susan, if you are reading this, thank you!
To wrap things up, I wanted to extend my gratitude to the many businesses and individuals out there that have been donating and contributing their time to the benefit that my friends and family are planning for February 26th at the Lighthouse Inn in Two Rivers, Wisconsin. The link to the event on Facebook is HERE.
Thanks again and I will keep in touch.