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
black and white
Back at it
Well what can I say…. I’ve been in a massive fog for about 2 1/2 weeks. Whether it be the pain meds from the back surgery or the chemo meds, not really sure. But I’m out of it and am feeling my normal self…. finally! Finished chemo last Wednesday and am waiting for my levels to raise back up so that I can get out, hopefully in time for Christmas. I’ve continued on with SEPTUA since I feel I should still be documenting this process. Hopefully when all curated and formed it will show a suitable representation of what leukiemia could be.
As of right now, I’m pushing forward and continuing to keep in contact with clients, send my normal promo emails keep them in the loop. This will not stop me, I’ve came this far and still have so much to go! I just wanted to say I have no words for the level of love and support ThAt we have received from our friends, family, clients and co workers. I love all of ya’ll and and truely feel blessed by all of you! Thank you!
97 days
97 days... it has been 97 days since my big head sister saved my life (thank you Jazz).
It has been 97 days since my Stem cell transplant.
It has been 97 days of have a new immune system (and all the complication that go along with it) and life.
97... seems like a long time huh, to me it flew by. I’ve been spending those 97 days trying to get back to normal. Spending time with my two Zs. Enjoying being free from the hospital bed. Working...
In 3 more days I’ll find out how my transplant has melded with my bone marrow. I’m excited to see and if I might say... a little nervous. What ever might come I’ll take it and run with it, like I always have.
Finding Glitter
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.
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!
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.
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...
Bordem is the loneliest number
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.
Keep moving
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.
End of round one
While I'm at the hospital about to start my 4th round of chemo this image marks the end of my first round of chemo. Going home for a week, the nurses had to remove my pic line. If you don't know what a pic line is, it is basically a direct line to the heart when inserted.Going home for a week, the nurses had to remove my pic line. If you don't know what a pic line is, it is basically a direct line to the heart when inserted.
It is where they gave me the chemo, where they withdrew blood and where they gave me infusions if need be. I thought that since this thing has been inserted in my arm for a better part of a month, that it will hurt like hell coming out. To my surprise, it didn't... it felt like string being dragged over my chest and on to my shoulder. Very weird sensation. All images after this will be from my 2nd and 3rd rounds of chemo.
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.
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.
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!