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
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.
I shot this image for Nike Basketball at the middle of the year but I’ve used their mantra for over 20 years. JUST DO IT... I get “ALOT” of questions daily on how I can just push through and not “stress” about possibly dying from leukemia. If anything my first round with Leukemia taught me was that we are all vulnerable and to find yourself a driving force. Well, fortunately my driving force was already installed into my life... no need for upgrades. Zoey and Zenaida are my driving force... they are what gives me energy in the morning when my levels have bottomed out for days and I haven’t been home in 3 weeks.
Days like today where I’m having acid flux and every bite I swallow burns going down. It’s all good though, I KNOW I need to eat so I try and have some Maalox ready. Getting those calories in is way more important than being comfortable at the time. That’s my mindset... JUST DO IT. Whatever I have to do, JUST DO IT, JUST DO IT for them. Is it easy? Hell no, fuck no, but to me I have no other options. It is either you do this or don’t... no two ways around it.
I know this sounds like a hard, unforgiving and messed up plan to follow but I like all cancer fighters have been given a hard, unforgiving and messed up set of circumstances. Now I don’t want anyone to feel bad for me... I’m blessed way beyond I should be.
Just a reminder when you “think” you “should” do something but you are being apprehensive... JUST DO IT. You never know it might be what you needed to get you by.
Life ain’t always glitter and rainbows... how much you choose to be negative about directly influences how your life will end up. I will always find glitter in old soggy confetti.
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.
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.
Ask not for a lighter burden but for broader shoulders. - Jewish proverb
Almost there, just have to strap in and push through.
12, 4, 8, 12, 4, 8... those are the times that I have my vitals checked. Blood pressure, pulse rate, oxygen and temperature, nothing too bad. I'm asked frequently " doesn't that get irritating?" My simple answer to that is NO. Simply put, if you had a bomb strapped to your chest and you couldn't reach it... the timer was set for detonation every four hours and five minutes wouldn't you want some one to come in everytime to disarm it? Pretty extreme way of thinking about it I know, but it hits home none the less.
There are somethings you can't avoid... no matter how healthy you are. In some shape, way or form side effects from either chemotherapy or assisting drugs will be present. My side effects have been pretty mild considering what others have gone through. I've only had some appetite problems and acne (from methyl prednisone). Nothing really to complain about, but a side effect none the less. My mindset is "It can always be worse", and with cancer it most definitely can be. I've learned to deal with my ever changing body... as long as I'm alive to see it change and hopefully progress to a place where I can mold it back to where I was before.
I took this image on the day my life changed for ever. My doctor called me and told me to go to the nearest ER because my platelets were extremely low and I was at risk. On the way to 2nd ER (the first was a 24 hr Small ER) my lower back pain was excruciating, my one smidge of comfort came when I folded myself up and put my feet on the dashboard.
After 6 hrs and many, many vials of blood later, I had my diagnosis. Z and I cried for a minute... to be honest, as soon as I heard the words "Leukemia" Zoey popped in my head. I started to think about all the things I wouldn't be able to teach her and all the memories I'd miss. That's why I cried... I didn't give a damn about what was wrong with me. People get diagnosed with cancer everyday, I am no different.
Now this post isn't gonna be all sad and mushy, I'm happy to say I've been in remission since late May. My job is to keep that streak going and that's exactly what I will do. I will be around for a very, very long time friends.
What can I say, that you haven't already shown. This has been a hard journey for both of us, one day you had a husband there to help raise our sweet (and stupid energetic) Zoey... then the next you didn't. I'm sorry, I'm so, so, sorry... I know it is out of our hands but I want to be there. I miss ya'll something terrible and can't wait for that FaceTime at the end of the day. We've cried on each others shoulders (I kinda had to stoop for yours) but I am certain this is just a temporary learning block. We've argued about your need for rest and you not making the trek over here. We aren't perfect but when we make it through this, we'll be able to make it through anything thrown our way. Thank you and I'm honored to be your husband. I love you Zenaida Campbell.
Ahhhh old ole shower time! Hold up, not so quick... gotta wrap that pic line. You don't want to get it wet since that can cause the growth of bacteria and all kinds of fun stuff. Slide your arm in a two ended plastic bag then put Coban on top and bottom with a little tape to seal it up and you're all set!
Home sweet home! After 29 days (round one chemo) of being away from Z, Zoey and my home... I just wanted to relax with them. You never truly know how blessed you are until it is taken away. Hold everyone you hold dear tight... very tight, for they could be taken away as soon as they step outside the door.
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.
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.
In 3 days I'll start my 4th round of chemo, it was really good to be home for 2 weeks! I got to spend a lot of time with Z and Zozo but it is back to reality. I shot this the first week on my first round of chemo, this construction site looks very different now. This is my clock, to show the passage of time. Hopefully I can convey a real passage of time in 7 months.
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.
I've sat here for a while... trying to think of a better title for this post.Ha... ha... I failed... but when the chemo or drug side effects hits you hard as hell, making it to the restroom is sometimes not a option. That little jug hanging off the trashcan has saved me more than once.
These bottles also serve the purpose of monitoring your fluid output. That way the nurses and doctors can see if you're retaining fluid or urinating it all out. If pee grosses you out... then you might not want to continue on with this feed, because it only gets better!