Living with Acute Lymphoblastic Leukemia

Finally got my next Chemotherapy phase started today with a whopping dose of methotrexate – can you guess which IV it’s in? Turns out the generic version is sold under the name “Mountain Dew.” Several of these chemotherapy drugs are florescent yellow, red, blue (i haven’t had the privilege of blue yet) – I’ve decided it’s either to keep patients distracted while you poison them or it’s a warning to predators like those poisonous tree frogs.

Mmm... Poison tree frog... *drool*

Tree frogs aside, it’s nice to finally get my chemo on. I spent all week doing everything I could to get my body ready to start this chemotherapy run and then when I’m watching the nurse don her space suit to protect her from whats about to be dropped into my circulatory system over two hours, I remembered how much I don’t like chemo. I can’t imagine i’m the first cancer patient to have mixed feelings about their treatment. Despite it saving my life and being kind enough to keep me on the fairly non-reactive end of the side-effects, I’m just not sure I’ll ever learn to love it – or stop calling it poison. I received one of the drugs I’ll be taking long-term (Gleevec) at home when I was discharged - aside from the fact that it came with a $4,250 bill I’ll never have to pay (thats 30 pills people, a one month supply), It came in a huge bio hazard bag with CYTOTOXIC written all over it. my cancer meds are poison.

Though you’d never believe it, I received copies of the consents for the stem cell transplant today that make that seem tame – a few highlights:

from Complications After Transplant -

“For up to the first year or longer following discharge from the hospital, the immune system of patients undergoing allogeneic transplant remains abnormal for on year or longer… secondary cancers such as leukemia and abnormal changes in the bone marrow can arise”

from Other Serious Risks -

“Myelodysplasia (MDS), a serious blood disease that can lead to chronic anemia requiring transfusions, chronic low white blood cell count that can lead to increased risk of infection, chronic low platelets requiring transfusions and increased risk of bleeding. MDS can also lead to a life threating form of leukemia.”

For those who missed it – potential complications include LEUKEMIA. It boggles the mind. And even if you don’t get leukemia from your leukemia treatment, MDS sounds uncomfortably close to the real deal. Consents are scary by definition and some of whats listed is because four people in the history of the world ever developed a certain reaction or side-effect. Once you’ve signed enough of these that list “grievous and severe bodily harm” right above “death,” for better or worse it begins to lose it’s impact.

For a lack of better words – this transplant is going to suck - then it’s going to be awesome. Again, not entirely sure how to address the mixed feelings this disease seems so good at producing. Luckily at this point the choices to be made are fairly clear-cut so my feelings on the subject are not all that important to the decision making process.

Wait – did I just say my opinion doesn’t matter? I hope none of my doctors ever find this site (for about seven different reasons) .

“Feed my will to feel this moment urging me to cross the line.
Reaching out to embrace the random.
Reaching out to embrace whatever may come.”

Song: Lateralus
Album: Lateralus
Artist: Tool

- Austin