First off, I would first love to talk about the wonderful weather we have been having here in Wisconsin. When I saw the temperature gauge sitting at 83 degrees the other day, my jaw dropped. It’s been absolutely gorgeous outside and I am sure it is something everybody has been waiting for. It was a very long and snowy winter…one that I am sure we won’t miss. But good times are here once again and it’s time to enjoy the spring and summer.
The past week has been more slow improvement. Last Friday, I called Harley up to talk about a time table for me getting back to work for them. The woman from HR who I have been in contact with throughout my ordeal reassured me that I was included in the headcount for the employees that will be working there after their layoffs that they have been having. It sounds like they are waiting for me over there and they have my position just sitting there. I am going to do everything in my power to start working there by the end of May. Improvement is slow…but I am getting there. Each and every day I can feel my strength returning and my appetite coming around.
Just this past Monday, I had an appointment at Froedtert. More blood work followed by the dreaded bone marrow biopsy. After the blood work was done I waited in the waiting area for an hour or more and then was finally called back there into the procedure room for the biopsy. The doctor who was going to be doing my biopsy informed me that my counts were better than ANY of the other patients that have been attending clinic. This is including people who have been out of treatment now for over a year or more. It was just a month ago, where they nuked my body with high dose chemotherapy and a ton of radiation…and already my blood work is looking that impressive. The doctors cannot believe at how well I fought my way through and the timeframe that those counts have returned. Through my first transplant in 2003, I remember having to get platelet transfusions and red blood cell transfusions on a weekly basis, because my counts just weren’t coming back – which is totally normal. So as far as blood work goes…I am doing great.
The biopsy itself was once again quite painful. I never look forward to these things. They drugged me up on some Fentanyl and Vercid. It just makes me relaxed. Almost everyone that gets that stuff can’t remember anything afterwards. I think I’ve built up immunities towards its effects by now and getting that stuff is like eating candy…a mere placebo almost. But I got through it okay and the site on my lower back is healing up just fine.
My dad stayed around the area and hung out with me until Monday. My mother has been sick the past week and a half or so and she was feeling better so she came down to Milwaukee to fill in his role for a day or two. Thank you, Dad, for all the help you gave me the past week and a half. I couldn’t have gotten to where I am without your help.
I went over to Dawn’s with my mother on Monday night (Cinco de Mayo) to enjoy some delicious Mexican food that she cooked up for us. We had a good time and the food was great, but I was dead tired by the time we were ready to go back home. Thank you Dawn for the great food and conversation.
All in all, I am feeling worlds better than when I first got out of the hospital. It was maybe only a week and a half ago that I could barely stand up from a sitting position and now I am able to get around somewhat and function on my own. I would say my strength is still only at 50% or so, but it was probably at 5% when I first got out. I figured I’ve got 2 or 3 weeks to get that above 85% or so until I will feel well enough to get working for Harley. It can get mighty boring when you have little to do and all you are waiting for is for your immune system to come up to snuff and to get enough strength in your legs to climb a flight of stairs. It’s bad enough that I am not able to go out into the sun like a normal person. With this amazing weather, I would love to be able to get outside and enjoy the fresh air and sun. But sunlight is one of the top causes for something known as Graft Versus Host Disease (GVHD).
Basically, this would be Lindsey’s cells not recognizing my body as Lindsey’s and going to war with my body. Acute forms of this disease are most common within the first 100 days post transplant. I am at like 34 days right now. It’s a very serious condition and something that I believe is fatal to 25% of the patients that it occurs in…so we don’t want any of that. However, from what I understand, a little bit of GVHD is actually a good thing, because it causes something called a Graft Versus Leukemia Effect. This is where not only would Lindsey’s transplanted cells go to war with my body, but they would also go to war with any leukemia cells still floating around in my body. Through my first transplant, I had absolutely no GVHD. This is due mainly in part to the fact that Mike, my older brother who was my first donor, was so close of a match that his cells always thought that my body was his. One of the reasons my cancer came back COULD be due to the fact that I did not get any GVHD or the Graft Versus Leukemia Effect. Lindsey turned out to be just as close of a match so I am expecting not to get any GVHD this time around eiither. Also something interesting to note, is they have me on a drug right now that actually suppresses my donor’s cells so that they are somewhat stupid. The drug kind of keeps Lindsey’s cells at a point where they aren’t quite smart enough or strong enough to figure out that my body isn’t hers. However, using this drug for this purpose is kind of like a double-edged sword. I do get the benefit of having a lower risk for getting GVHD by doing this, but I also have a higher chance of my leukemia relapsing. During this first 6 months or so, Lindsey’s immune system will be the only thing that will either kill any leukemia cells floating around or keeping them at bay. But by using this drug, it is also suppressing that system. It’s walking a pretty fine line, but it is something that they do with every single patient that gets an allogeneic stem cell transplant. Just something I thought I would attempt to educate my readers about.
Anyways, I think I might try taking a trip up to Two Rivers this coming weekend for a little hiatus from Milwaukee. It’s been a long time since I have seen “home” and my dog, Marlee. It’ll be a nice breath of fresh air. Also, I’m still waiting for my hair to give me a sign that it wants to grow back. I’m still bald as ever and will get some pics up on the site in my next journal entry. I’ll bring my camera to my parents house with me or something. So enjoy the weather and have a wonderful weekend!
“I take nothing for granted. I now have only good days or great days.”