Tomorrow, June 18, makes 1 year since I was diagnosed with Acute Myeloid Leukemia.
At 12 PM I went to my pediatrician’s office and she ordered a CBC to check for mono. I tried to walk the two blocks to the lab but realized I wouldn’t be able to make it. I drove two blocks. At 5 PM my phone rang: white count 129,000, CHO ER was expecting me, my pediatrician had called ahead, could be cancer. 6 PM: repeat CBC in the CHO ER, yes your white count is really 129,000. Could this be an infection? A weird South African virus? Hell, we will take HIV at this point. Anything but cancer? No. 8 PM: Acute Myeloid Leukemia. “The less fortunate of the leukemias.” Hemoglobin 6.6. No wonder you can’t breathe. 2 units of blood, platelets, antibiotics, morphine. Can you hold on a second? I need to process for 5 minutes. No, we are shocked you aren’t bleeding internally right now. The door says hematology/oncology, sign this consent, we need another IV, 80% survival if we’re being optimistic. 2 days until your first bone marrow aspirate, central line placement, and round of chemo. 2 weeks till your hair is gone. 37 days before you will breathe outside air again.
The past year has included the following:
- 7 months inpatient
- 3 rounds of chemo
- countless blood and platelet transfusions
- 5 bone marrow aspirates
- 1 ovary removed
- 1 stem cell transplant
- 8 infections: rhinovirus, pneumonia, c diff, e. coli, klebsiella pneumoniae, and 3 undetermined
- 8 central lines
- 4 septic incidents
- 1 grand mal seizure
- 2 stays in the ICU
- 2 blood types (O+ to A+)
- 20 kg gained and lost due to grade 4 GVHD
- 3 months NPO (nothing by mouth)
- 5 months of photopheresis
- 7 months of steroids
I have been supported by an incredible community including CHO nurses, oncologists, residents, and staff, my friends and family, the Stanford class of 2017, and the families of 5 south. You all have saved my life at times when I didn’t feel like my body could possibly be salvageable – when induction failed, when the pain was so acute I couldn’t see, when I was vomiting every 5 minutes, when I was so confused that I didn’t know what was real and what was a hallucination, when I was too weak to sit up or walk or bathe myself. I have been grateful and I’ve been angry, euphoric and depressed, hopeful and terrified. I had no idea life could be so hard. By the grace of modern medicine, an army of caregivers, and a significant amount of luck, I’m here and I’m okay.