A Helpful Guide to Acute Myelogenous Leukemia

Okay fine, it is Sunday, not Friday.  Sue me.

So as you may or may not be aware, on July 24th of this year, I was diagnosed with Acute Myelogenous Leukemia, (or fucking piece of shit AML, for short).  Because of the nature of this cancer, it is important to start treatment as soon as possible.  So I did.  On July 30th, I was admitted to St. Mary’s hospital to begin my Induction.

Induction:  In the world of fucking piece of shit AML, Induction is when you get a dose of a couple of chemotherapy drugs, (one lasting 3 days, the other a week).  The doses are massive, the clinical term is “a shit ton”.  The effect of this chemo is that the cells in your bone marrow, both cancerous and healthy, are wiped out.  The chemo is fairly tolerable, but once it works…

Nadir:  The period in fucking piece of shit AML treatment when your blood cell counts are 0 (without the aid of transfusion).  Some believe this term was named after the doctor who pioneered treatment for fucking piece of shit AML, but in reality, it was a misspelled attempt at naming the term after Ralph Nader, who always got low counts.  This is the part of Leukemia induction treatment that really kicks your butt.  Your white cell count is down to 0.  You have no protection from infection.  You will get a fever.  Then chills.  Then another fever.  Then a high fever.  Then the infectious disease specialists will get called in and will really make your life hell.

Infectious Disease Specialists:  Doctors and a couple nurse practitioners who are programmed to run the same tests over and over, reaching the same results, with little regard to the health and well being of the patient.

You will get stabbed at 4 in the morning, even though you have a line to take blood from, so they can run cultures to make sure you don’t have sepsis.  It will come back negative.  They will put you on IV antibiotics that all have side effects.  You will have another fever.  They will send you down for a two view chest x-ray.  The chest x-ray will come back negative,  They will not stab you at 4 that morning.  The will tell you they can’t find an organism that is causing your fevers.  The next day, you will have another fever, but one that is much smaller than previous.  They will stab you again at 4 in the morning.  The person who stabs you that night does do literally and bruises the hell out of you in her 4 attempts at digging into your vein.  The culture will come back negative.  They will have you on 4 different kind of antibiotics.  They will get a stool sample.  It will come back negative.  They will get a urine sample, it will come back negative.

Somewhere in this, you discuss with one of the nurses that you probably wouldn’t be running fevers if you were actually left alone to sleep more than an hour at a time.  She offers you ambien.  You are so desperate for sleep, you reluctantly accept.

You wake up the next day feeling great.  The infectious disease doctor comes in just as you first sat up to eat breakfast.  She listens to your lungs.  She says you have decreased lung function on one side.  She tells you she thinks you have pneumonia.  You get another two view chest x-ray.  They tell you that if you get a fever they will need to re-culture you and you are not looking forward to being stabbed at 4 in the morning, when you feel better, and the first two didn’t find anything anyway.  You get a breathing tester machine.  Within a couple tries, you max it out.  You don’t run a fever all day.  Then, just after 5, they take your temperature.  You are feeling fine, but it shows a 100.5.  You know you are going to be needlessly stabbed again.  At shift change, the night nurse comes in to check your vitals.  When she puts the pulse/ox sensor on your finger, it shows you have a heart rate of 228.  This is the same machine with the thermometer that read 100.5.  You tell the night nurse you thought that was wrong too.  She brings the portable thermometer.  You are at 98.2.  You have won your first battle in the long war against the infectious disease doctors, but you know victory is short lived.  Any fever for any reason and they will stab and culture as much as they can.  It is their purpose, test, test, test.

So what is left?  Well, another 2 weeks or so of very low white counts, which means another 2 weeks or so of antibiotics.  After that you will have about a month off before you either come back for consolidation therapy or go to get a stem cell transplant.

Consolidation Therapy:  Chemotherapy given over 4-6 rounds after initial remission to prevent recurrence.

Stem Cell Transplant:  Taking blood stem cells from one person and putting them in another person do the receiving person can rebuild their own healthy marrow.

The last part of this guide is some advice, should you ever find yourself with this diagnosis.

STAY POSITIVE!!!  You can beat every aspect of this and will survive it.  Except the infectious disease doctors, they will most likely win.