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
analog
Just do it…
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.
New Birthday
Today is the day... I guess I get a new birthday today along with my new immune system. I am so at a loss for words right now. Really I just wanna be with Zoey, Z, mama and sisters. I want to be with my sister while she is going through the process of harvesting the stem cells. I know that isn’t easy. So much going through my head right now... just know that I am eternally grateful to everyone! Ya’ll strength and praying has brought me here. Even if you didn’t pray your well wishes provided momentum. I love you all!
Casi ahí
Ask not for a lighter burden but for broader shoulders. - Jewish proverb
Almost there, just have to strap in and push through.
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.
Influx
One of the saddest things about being in a hospital for 3 weeks has nothing to do with me. It is seeing the amount of people being life flighted in everyday. I see this helicopter fly in at least 3-4 times a day... hopefully the people they fly in get to walk out.
Faith
My chemo cocktail
Methotrexate is used to treat certain types of cancer or to control severe psoriasis or rheumatoid arthritis that has not responded to other treatments. It may also be used to control juvenile rheumatoid arthritis. Methotrexate belongs to a class of drugs known as antimetabolites. It works by slowing or stopping the growth of cancer cells and suppressing the immune system.
Side effects:
Nausea, vomiting, stomach pain, drowsiness, or dizziness may occur. If any of these effects persist or worsen, tell your doctor or pharmacistpromptly.
Temporary hair loss may occur. Normal hair growth should return after treatment has ended. Mouth sores, diarrhea, signs of anemia (such as unusual tiredness, pale skin), signs of liver problems (such as dark urine, persistent nausea/vomiting, stomach/abdominal pain, yellowing eyes/skin), easy bruising/bleeding, black stools, enlarged glands/lymph nodes, bone pain, unusual pain and discoloration of the skin, signs of kidneyproblems (such as change in the amount of urine), dry cough, muscle weakness, weakness on one side of the body, neck stiffness, severe headache, vision changes, irregular heartbeat, mental/mood changes, seizures.
This medication may lower your ability to fight infections. This may make you more likely to get a serious (rarely fatal) infection or make any infection you have worse. Tell your doctor right away if you have any signs of infection (such as fever, chills, persistent sore throat, cough).
This medication can affect sperm production, an effect that may lower male fertility. Consult your doctor for more details.
Leucovorin
Reducing the toxic effects of methotrexate and certain other medicines (folic acid antagonists). It may also be used to treat other conditions as determined by your doctor.
Leucovorin is a folic acid derivative. Methotrexate and the folic acid antagonists block the body's production of folate. Leucovorin works by replacing folate in the body.
Side effects:
Though these are very rare, Severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); fainting; seizures.
Cytarabine
Cytarabine is used alone or with other medications to treat various types of cancer. It is a chemotherapy drug that works by slowing or stopping cancer cell growth.
Side effects:
Nausea, vomiting, loss of appetite, diarrhea, headache, dizziness, and pain/swelling/redness at the injection site may occur. Nausea and vomiting can be severe. In some cases, drug therapy may be needed to prevent or relieve nausea and vomiting. Not eating before your treatment may help relieve vomiting. Changes in diet such as eating several small meals or limiting activity may help lessen some of these effects.
Temporary hair loss may occur. Normal hairgrowth should return after treatment has ended. Fever with body aches, muscle/bone pain, chest pain, eyeredness/itching/pain, painful/difficult swallowing, anal sores, signs of kidney problems (such as change in the amount of urine), painful/difficult urination, joint/side/back pain, pain/redness/swelling of the arms/legs/feet, numbness or tingling of hands/feet, freckling, big toe pain, trouble breathing, black/bloody stools, blood in the urine, vomit that looks like coffee grounds, vision problems (including blindness), mental/mood changes (e.g., confusion), unexplained drowsiness, unconsciousness, enlarged abdomen, trouble walking, muscle weakness, loss of coordination, inability to move (paralysis), seizures.
This medication can lower the body's ability to fight an infection. Notify your doctor promptly if you develop any signs of an infection such as fever, chills, unusual cough, or persistent sore throat.
A very serious allergic reaction to this drug is unlikely, but get medical help right away if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.
4/14/17
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.
In this together
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.
Home
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.
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.
Passage of time
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.
Pee bottles
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!
Going home
4 am... I might not look happy but I was elated! The nurse come in at 1am and told me I might be going home in the morning (I did). I'm not a big smiler hence my face but I just couldn't go back to sleep. I was excited to spend time with Zoey and Z, I was excited for fresh air and anything other than level 8 of Methodist Oncology ward.
P.S. This is from my first round of chemotherapy, I'm now about to start round 4.
Family
Few things have made this whole journey more manageable than family and friends. I've been blessed to live so close to the hospital for my treatment, I've been visited by hordes of family and friends. I appreciate you all!
Self
This is me at a bloated 197lbs (13lbs in 4 days) up from a lean 184lbs... they have to bloat me with water to help flush the chemo out of my body as quick as possible. I want talk to ya'll about weight loss and psych, I'll been one way for the better part for 24 years. I made it up to 270lbs in my early 20's, was squatting over 700, deadlifting almost 700, benching high 500's. Then I got into bodybuilding. Cut down to 210 and never looked back.
When you are known to be at a certain level, a level you worked soooo hard to achieve... it should bother you when you lose it. Well it didn't really bother me to lose weight as fast as I did until I hit 180... that was a 50lbs loss. I haven't been 180 lbs since 7th grade. I know after this is all said and done I will gain it back but it kinda feels like a piece of my identity was taken way for now.
26 days
The pain of missing your child is the most unbearable pain. To have them grow up without you even if it is for just 3 weeks is unthinkable to me. This is me after not seeing Zoey for 26 days during my first round chemo. I broke down, ugly cry and all. I go back to the hospital on next Monday, I would say I'm better prepared but I would be lying. I love you Zozo!
Breakfast cocktail
To combat the effects of chemo I have to down a assortment of drugs,
Anti viral
Anti Bacterial
Anti fungal
Anti nausea
Methyl-Prednisone
Pepsin
I've never taken this much medication before but I must say that it is doing it's job! besides a couple day of being extremely tired I haven't had any real bad days... yet.
My ommaya and I
My ommaya and I... It has taken me a while to get use to this thing on the top of my head. People staring at it like a little titty on my head didn’t help, but I understand. My “sad little unicorn horn”. I know I joked about it when I first had it implanted and seemed ok with it... I wasn’t. But that’s what I do... joke about things that make me uncomfortable... that’s my coping mechanism. I joke and make light of things until I actually am ok with them and that leads me to this thing. I’m FINALLY ok with it. We’ve become good friends. People can stare, question and ask... it’s cool. It is part of this whole journey.
