Many people in my Myelofibrosis support group asked me for a real update about how I was doing. I didn’t really have an immediate answer because unfortunately, “how are you” has become one of the world’s most complicated questions. It has been known to start its fair share of sidewalk wars.
Anyway. I’m going to talk about my medical situation and what’s going on inside my body and how if affects the rest of the world around me. Going into our wedding, I wasn’t do so well. YEah! I got married! There's going to be a completely over the top post for that wedding, I’m still trying to pull it all together. After consulting with the doctor, he adjusted my medications and I got through our wedding. It was one of the most wonderful moments in my life. Strike that… IT’s THE most wonderful moment of my life. But that must come later.
After the wedding was over, I was knocked out with fatigue. If I recall correctly, I had 3 days to recover and try to make it back to work (we didn’t go on our honeymoon until later since Anita has her Pharm school0.
After I got over what I dubbed the wedding fatigue, I started getting a little bit better.I was feeling more energetic. All the while we’re trying to put our apartment together. I had enough energy to put together ALL the new furniture that was bought. Yes, there were nights where my hands shook too much for me to be doing these sorts of things, but I was determined..
I had a few tasks like these and I think they helped me feel better. But for some unknown reason, everything went right down the tubes right around the time the seasons changed. I’m having difficult moving. Right now my work week is 3 days in the office and 2 days from home. That schedule has been beating me up. Even being in the office has been very depressing. I’m constantly bombarded from higher ups about my deficiencies and I try to explain to them about what my body is exactly doing to me and that I can’t work at the level that I did for now and I’m dealing with some larger issues. I fear this statement has fallen on deaf ears. It sucks, but at the same time, my team is second to none. I have a few at my job that I wouldn’t make it without, even if sometimes I think their jokes go a little too far… Of course… Any good joke is going to go a little too far, right?
So, back to the specifics. My doctor believes that some of my GVHD symptoms might be making the turn into chronic symptoms. This is bad. He proposed many therapies we could do in order to make it better. Unfortunately, I have no sick days, no vacation days, and only 9 hours of comp time. And I’m pretty sure she’s waiting for me to make a mistake just egregious enough for them to fire me. I feel it on my back every day. Then I’d be ROYALLY fucked.
So, I am currently suffering from extreme fatigue. I has VERY little energy. Just driving to work 3 times a week puts me out early Friday and Saturday is normally wasted because I can’t do anything. It really sucks for Anita because she sometimes scolds me telling me that “She’ll just have to do everything again” And while I’m sure there’s at least a little merit in it… It doesn’t make me feel good.
My skin! A pox on my skin! It’s always dry and itchy. The hair on my head, hands, and legs is slowly falling out (after it grew back!). I have an acute case of it on my scalp. I don’t know what that means, but it looks like I have dandruff constantly. To not make it any worse AND to hide it from everyone else, I wear a hat everywhere… Even to work. There are VERY few nights I can go out styling my hair… Of course.. THere are also very few nights that I can actually go out.
My vision! My one prized possession o f20/10 vision. ALl the radiation and chemicals have changed my eyes. I might need glasses. Boo.
And then finally… There’s a BIG problem. A Certain organ of mine seems to work on its own schedule and I’ve not been utilizing it to the best of my abilities. It’s not fair. She’s been through so much with me and I can’t give her what we both want to do . I’ve lost a lot of tears over this last one. Do you ever want to not feel like a man? Have the latter problem and then have your wife tell you that she has to do everything. It works wonders on your psyche.
I guess that’s about sums it up. I try and put a positive spin on all this, but with all I’ve just written, it seems… Kinda crappy. But I keep on my happy face. I’m trying to focus on getting into the office 5 days a week by the new year. That would be great. Then I’m going to focus on my goals.
I know that it sounds dumb, but this disease has taken maybe 10 years out of my life. Well, I’m going to try and use the NEXT ten years to get to wear I want. I want to reclaim my life from this disease and my own indiscretions and be where I thought I would be. I can do it. If I can get through a stem 8 (plus 1 to come) bone marrow biopsies, a doctor ripping a port out of my chest.having a blood clot in my hepatic vein. Having a huge blood clot in my lung (when the nurse saw me again a year later… HE WAS SHOCKED I was alive… He just kept going on about how big it was!). If I can get over having to inject anticoag meds in my stomach twice a day every day for 5 months, administering my own bag drips at home. After surviving a week of radiation designed to destroy every cell in my body. AFter surviving a very complicated bone marrow stem cell tranplant, I should be able to accomplsh whatever it is I want. The next ten years better watch out.
