1 Year

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.

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