"I have cancer, too. And let me tell you, it's a bitch. And it's an equal-opportunity offender. No amount of money in the world, no amount of privilege can make you exempt.
And when it chooses you, you're suddenly thrust into a club you didn't ask to join. You're shipped off to war, even though you never enlisted in the army. But you have to put your armor on anyway. And know that if you're lucky, you'll discover different sides of yourself -- like a will you never knew you had.
And you'll get to see new sides of the people who matter the most to you in the world, as they wrap you in their love and lend you their strength when yours is running low.
And then you go off and you fight. You fight like hell. Because, really, what other choice do you have?"
--from Chasing Life
In the summer of 2013, I was coaching cheerleading for a local school. While at camp, I started to feel extremely run down. One morning, I woke up with black eyes and I had to send my girls down for activities without me because I was so sick. I thought I was just over-tired from the camp because it's a lot of rigorous activity from sun-up to sundown.
When I came home, the fatigue didn't get any better and I developed a cough. I'd also gotten some mosquito bites at camp and instead of being pink and a little swollen, they turned in to bruises with hard bumps.
I went to the doctor to see what his thoughts were and the first thing he did was draw some blood. When they spun it in the detector they have at the office, my white blood cell count (WBC) came back at 45,000, which is really high. My doctor thought it was possible I just had a really bad case of pneumonia. He gave me antibiotics and medicine for a cough, but told me I had to come back in five days to have my WBC checked again.
When I went back five days later, my WBC was over 60,000. My doctor saved my life that day. He knew exactly what he was looking at and even what kind of cancer, specifically, which is rare because not many PCPs keep up with oncology ins-and-outs. He ordered a BCR-ABL test to check for Chronic Myeloid Leukemia and referred me to a local hematologist/oncologist. Because I didn't have the greatest experience with him in general, I'll call him Dr. N for the sake of privacy.
Dr. N's feeling was that I was having some sort of autoimmune response. He did send me to the lab for a full panel checking for various blood cancers -- all types of leukemia and lymphoma. Most of those panels, including the BCR-ABL, which he also ordered, would take somewhere between 7-10 days to come back with results.
Luckily for me my PCP had ordered the BCR-ABL test five days before Dr. N ordered his panel and the result came back that I did, indeed, have Chronic Myeloid Leukemia.
It's worth mentioning that leukemia was one of my greatest fears. At that time, I was not great with blood and needles. I also had had immune system problems for the better part of 15 years, so I was naturally afraid of infection, especially since I'm allergic to several antibiotics. I was sure I'd get an infection that would kill me, since leukemia patients are prone to infection.
Over the next year and a half, I stayed with Dr. N, but it became clear to me that he didn't really understand CML fully and that he was making a lot of guesses when it came to my care. He had prescribed for me Sprycel at its highest dose, 140 mg, which was working and I did reach what is called a Major Molecular Response (MMR), which is a huge milestone, but I wondered if we had gone to the highest dose too fast, not leaving any wiggle room if the cancer relapsed.
Six months in, my gall bladder became infected and I developed my first case of diverticulitis. I spent five days in the hospital that time and for the first time, my liver enzymes jumped up a little.
When my liver started having a negative response, my small-ish local hospital put me through the ringer without any real results. They ket me inpatient for six days but couldn't find any real cause and for some reason, they were hesitant to do a liver biopsy.
My then GI specialist referred me out to University of Michigan, because the small local hospital I was at had done and tried everything and gotten nowhere. This brought me to the CML specialist oncologist that I see today: Dr. Talpaz, one of the pioneers in developing drugs for CML patients and an active researcher who is just simply phenomenal.
Unfortunately, I wasn't done with the liver abnormalities ...
xo,
Heather
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