Project

Ommaya

Ommaya: basically a port for your brain and spinal cord. My type of leukemia (ALL with Philadelphia chromosome) can and did travel to my spinal cord. I take Sprycel for system wide prevention and Methotrexate to my spinal cord.I will receive chemo twice a week for a month, then once a month for a year. I haven’t noticed much yet... mostly just being a little tired a couple of hours later and a small headache. No complaints coming from this side though, I still get to work and workout and do all the things I need to do. This is MUCH better than being stuck in a hospital for months. #septua

Someone’s Hero

15... that’s how many bags of blood I’ve needed over my two  journeys with cancer. It is funny the stuff you remember. I’ve had more bags of platelets. I can only imagine how many people have given blood and/or platelets to help keep me alive. To everyone who has given blood, you don’t know this but you saved someone yesterday, today or you will save someone tomorrow. If you’ve ever thought about giving blood... do it. Be someone’s hero, even if you don’t get to meet them.

Alopecia

Even if you're bald, losing your hair is a humbling experience. It is so crazy to see the hair you been shaving for 24 years be so easy to pull out. I've always joked the I can't wait for my hair to fall out so that I wouldn't have to shave. Now that the choice of having hair has been taking away... it is bittersweet. I think it is more of a loss of choice than the loss of the actual hair.

15 vials

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These 15 vials of blood represent hope... 6 months of hospital stays, chemo, crap load of drugs and uncertainty and it is all coming to a head. A couple of weeks ago we found out that my little sister is a half match for a bone marrow transplant! My sister is saving my life, I still don't think I've processed it completely. I don't know how to thank her... I thought this would be a easy post. I'm just now realizing the gravity of it all... she is saving more than a brother. She is saving a son, a husband and a father. My little sister is saving my life, the person I called Monkey Face Jones all through high school is saving me. I'm trying not to cry while I type this (at the dentist). I'm at a loss for words right now... but am also in a good place and can see the light at the end of the tunnel. I'll make a more cohesive post when I can gather my thoughts. 

Bone biopsy & tools of the trade

Bone biopsies are weird, I've had 6 and don't remember a single one. I know years ago when you received a bone biopsy it was carried out with just local anesthetic. Well I'm a big baby, so they knocked me out every time and I'm very grateful for such kindness. I received a non pain medicated spinal tap once... NEVER AGAIN! I learned quickly that I don't like pain. Ha... ha.. ha... 

What matters most

When I'm out of the hospital for a week or 2 weeks I try to document my family as much as I can. They are definitely a huge part of my life.

The contortionist box

The title says it all... at the beginning it took me more time to get "in" the restroom than it took to "go" to the restroom.  Since this is my 4th round here, I'm a damn pro at maneuvering my IV stand in such a small space. Gotta remember to put that down in my resume.

Reflections

This self portrait thing is hard, I mean... just sitting in front of the camera is easy. Making it meaningful is the hard part. Documenting yourself is hard as well, I'm constantly reminding myself to shoot everything... even the mundane. This is my first time turning the camera on myself and it is very eye opening. Self portraits seem to be helping me find out more of who I am and what I can achieve. 

Let's face it, there is a possibility that Leukemia can take me. I'm not being negative, that is my reality. Of course I'm doing very, very well with chemo therapy and I feel fantastic... but the reality of things is no matter how awesome I feel, I have cancer. I'm not sad, I'm not depressed... I feel redirected and decisively more purposeful. Just because I realize I can die from Leukemia doesn't mean I'm going to go into the night peacefully... because I won't.

Stanzia and her mobile keyboard

On Wednesday's we have a young adults with cancer meeting. At the end of the meeting Stanzia (pretty sure I butchered her name) sings a song for the group. Now it might seem like these meetings are corny and you are better of by yourself. They aren't and you are not, now the meetings might not be everyone's cup of tea but it is good to know you have people who are fighting the same battles... sometimes the same cancer as you. Experience goes a long way in this fight.