Saturday, March 6, 2010

Update on a Sunny Saturday

This week has been at bit rough on my psyche, body and I'm sure my friends as well. I found out Monday that I contracted pneumonia again, only to be told that it was half-expected with the Campath wreaking havoc on my immune system. So I just had to go along with the standard plan of rest, lots of fluids and keep on the antibiotics that I'm already on. Thursday was my only day away from the hospital, but I was far too wiped out and tired to actually accomplish much. Then Thursday night, I got happy again.
In creation, I find happiness.
Meaning that, I find happiness when I create something. Thursday night's case was a simple dinner; yet still a creation from raw materials. And in that happiness, I find strength to heal myself and feel less sorry for myself that "I'm sick" "I'm tired" and the other whines I generate while I'm sitting on my now-bony ass. You'd think that since my ass is bony now and it hurts to sit on things that are not extra cushioned that I would actually get and create, but, seriously, I was tired. And you all know, I am sick. But I am not incapable. As a matter of fact, I can now dress myself without assistance. Quite a proud moment for someone that just re-learned how to walk. And(!) I can wear shoes now that my feet don't swell up to twice their size anymore. Top all that off with two good things that happened today: I put on jeans (actual pants!) for the first time since the 3rd of January. Of course, Leslie had to dig around in the basement for a pair that would actually fit me, but she managed to located the one pair I had stashed for that occasion when I would drop 40lbs in two months while undergoing treatment for leukemia. Good thing I plan ahead like that.
The other good news is my insurance company has granted coverage for my upcoming Allo Stem Cell Infusion Transplant, which I found out from a letter in the good ol' US mail. So the Doctors can really start moving forward on that front, and I just have to remain healthy until the procedure goes down.
Now if I can only get strong enough to start actually creating more things than dinners, although my dinners do get plenty of compliments, I'd sure like to create more things that last longer than a few hours. Like those T-shirts I promised Bill S. and the rest of Jordan Youth. Funny how a near-death experience can make someone less of a perfectionist; what seemed to me to be an error on the printing screen in December certainly would be printed today and accepted as part of the handmade charm. Punk Rock live on.
Rock an Roll y'all, Rock and Roll.
Oh! and for those that think it was "warm" today in Chicago, I can tell you with all honesty that it really wasn't. I lasted ten minutes outside before I was cold and I still had a winter jacket on! remember this: 50º is cold. If you believe that it is not, go ahead and set your thermostat to 50º. I'm telling you COLD. Sunny afternoon or not.


  1. Hey Mark,

    I just had to comment when I read your post. My husband, Max, who underwent a bone marrow transplant at the end of August also has a bony ass now! He sits on two cushions in our kitchen, surfing the days away. We are starting to venture out into the germy world - slowly but surely.

    We wish you all the best in 1) regaining strength and creating more and 2) in your upcoming transplant.

    Take care,

    Shirley & Max
    Buffalo, NY

  2. When I was walking to my car today I thought of you and hoped you got to feel the sun on your face for a bit... then thought DUH, he'll probably freeze. Love reading your posts..hang in there Mark and focus on the things within your control. Thinking of you..Jamie

  3. Good to see an update but sad to hear about the pneumonia bit. However what an awesome piece of news about your insurance coverage!!! Thinking of you daily. Much love, Nata

  4. Hi Mark . . . Sorry to hear you got pneumonia and had a rough week. What great news about your insurance coverage . . . you are blessed with that! Although 50 degrees is cold it is nice to know that warmer weather is on our way here in the Midwest and that you will be able to enjoy the outdoors soon. You have been going through so much but have improved in so many ways . . . walking again, getting dress on your own, and your feet not as swollen and they have been. Any loved one and friend certainly understands any impatience that you have . . . little steps at a time Mark. My prayers are with you . . . send my love to Lesile. Florette

  5. Hi Mark,
    Hope you are feeling better from the pneumonia!!
    I heard you got the trach taken out.. Cool:)
    Glad you finally got to cook dinner, I know how much you love to cook!!
    Hoping the time before your transplant goes smoothly!!

  6. Mark, I am sorry to hear you have pneumonia again. I am sending prayers for a fast recovery and a successful transplant.
    Les's friend

  7. Hi Buddy, glad to hear you are hanging in there and gettin better kinda, you know what i mean, i envy your determination, keep it up. we all miss ya and can't wait until we can get together for some cards, i'm sure you didn't forget how to do that. LOL Neal

  8. Yes - I still want that T-Shirt! Glad to see that you are on the rebound. Thanks for the regular and heartfelt updates...