Survival tactics of a germaphobe and spouse of an AML Warrior
When everyone actually is out to get you, paranoia is just good thinking.
— Woody Allen
I’ve never written about this story before
I am not superstitious, except for when it comes to the story of my wife and family and Acute Myeloid Leukemia (AML). I am active on social media and write technical blogs regularly, but have never written anything personal about my wife’s six plus year war against the boogeyman — Acute Myeloid Leukemia. I am going to tell some of the story today, because an AML Warrior on Twitter has been sharing his story the past three months and has given me the courage to write out loud.
I am concerned about his well being as he prepares to get a stem cell transplant, and the well being of all those around him. He needs his spouse, his family, and many heroes in health services and the larger community to be healthy to help him fight this war and every battle he will fight.
So many people in this world need the support of others to survive. COVID-19 is an unknown threat to us all. We need to respect it and have an abundance of caution about it, even if we ourselves are not at a particular risk of dying from exposure to it.
This is not about me, and COVID-19 is not about you
I am not an AML Warrior. My wife is. My wife has been an AML warrior since July 2013. I lost track of the hospital visits, blood draws, rounds of chemo, blood transfusions, platelet transfusions and sleepless nights watching my wife in audible and visible pain hitting the emergency dispense button on the morphine drip.
I am my wife’s shield. I am the first line of defense. I am the barrier for all visitors at the door. I am a shower of Purell at the first hint of a germ. I will kill every invisible germ in a six foot radius of my wife with complete disregard for anyone’s personal feelings. The boogeyman is real, and although I can’t see him, I will do everything in my power to be his kryptonite and keep him away from my wife.
This story is about the warriors and the heroes who help our loved ones fight and survive the horrible boogeymen that threaten them every day. Our actions today with respect to COVID-19 will impact many of them in ways that may not be immediately obvious.
Let me flash back to July 2013, when my life and the life of my family changed forever.
July 2013 — I don’t need your sympathy
This is a battle in a continuous war. If you step in my wife’s hospital room then you have entered the front-lines and we do not need friendly fire. You need to listen and respect my wishes as someone who’s primary focus is doing whatever is necessary to increase the chances my wife will survive. I am her shield. You shall not pass unless I say so and you will follow my rules. You say you’re the new doctor here to take her vitals? I don’t care.
- I need you to stay away if you have a cough, or are exhibiting anything that may only be an “allergy”. Not feeling like you’re ready to run a marathon and clean enough to perform heart surgery? Please just stay away.
- Ready for a marathon, freshly showered, and wearing your cleanest clothes? Please wash your hands.
- I need you to ignore any instincts you have. Ask me whether you should do something, before you instinctively do it. Going to shake hands? No. Hug? No. Kiss? WTF? No. Use my wife’s dedicated bathroom? No. Bring my wife flowers? No. Any other instincts you have? No.
- Please wash your hands.
- You need to perform any standard procedure on my wife? Wash your hands. Put on a mask. Put on gloves. Oops, accidentally touched your face instinctively with the gloves on? Take the gloves off, wash your hands and put on new gloves.
Repeat this several times a day for many years. I am proudly a germaphobe. The boogeyman is real. He is resilient. He will wait for you to let down your guard. Being a germaphobe is just good thinking when it comes to AML.
But I was not always a germaphobe. Let me flash back to my teenage years.
I am Unbreakable
When I was a teenager, I was in two near-death car accidents.
When I was 16, I went head first through the passenger window of a Lincoln Town car at full speed on my ten-speed bicycle and broke my jaw and clavicle. I was not wearing a helmet. I was in ICU for a week, and my mouth was wired shut for 8 weeks and I ate everything through a straw.
Note: Do not ever try and blend pizza and eat it through a straw. Ever.
When I was 17, I was thrown out of the rear-windshield of a Ford Mustang. I was in the rear left passenger seat, and was not wearing a seat belt. I recall being thrown up against the back of the driver-seat, and then having the wind knocked out of me as I hit the ground. I picked myself up off the ground and wandered around looking for my shoe. Except for a few stitches to my forehead where I had a laceration, I was miraculously fine.
My friends and I told these stories so many times at parties. The stories are fun to tell and are embellished with humor to elevate them to the level of myth and legend. They sound unbelievable and have a happy ending — I’m able to tell them.
When you hear and tell stories like this enough times, you start to believe you might actually be a superhero. I am not Superman. I was just lucky. These were just two random points in time where dice were rolled, and I didn’t crap out.
Fast forward to my 40’s. I’ve learned who the real heroes are, and they give more of themselves than any fun sounding story can at a party, no matter how many times you tell it.
AML humbled me
I spent a lot of time partying and going to bars in my early twenties. After my two near-death car accidents in my teens, I wanted to enjoy life as much as I could.
I did not know in my 20’s what Acute Myeloid Leukemia was. I didn’t understand what chemo does to the body. Chemo kills cancer cells, but it also kills the person taking it. Maybe not immediately, but it renders the person taking the chemo unable to defend themselves against common germs by killing their white blood cells. Chemo also kills red blood cells so you will have low energy. Chemo also destroys platelets so blood doesn’t clot and you bruise and bleed very easily. The picture above shows examples of the ease of bruising when unsuccessfully inserting an IV or taking blood when platelets are low.
AML is not like a car accident. AML is like being on a row boat with a leak in the middle of the ocean with hungry sharks swimming all around. If you’re lucky, after several years of fighting off sharks and paddling non-stop to any shore you can find, you might get lucky. Or, as my wife and I discovered, you might wind up back in the middle of the ocean for round two.
I have never told this story to more than close friends and family, because it terrifies me. The boogeyman is real. He is invisible. And he is waiting for you to let your shield down.
I see you COVID-19. Shield’s up!
I am not an expert or a hero, I am just a shield
Listen to the doctors and scientists and experts on disease control. You may not have an immediate risk of dying from COVID-19. The percentages might sound ridiculously low to you.
The percentages for other folks who are compromised are much scarier. Without the threat of COVID-19, the percentage chance my wife was given initially to survive given her risk assessment was 46%. We had the option to go with chemo only or a Stem Cell Transplant, and we went the chemo only route, due to another complication… My wife has Celiac Disease. Every medication, food, ointment, pain treatment, etc. had to be verified Gluten Free directly by the manufacturer. The Stem Cell transplant was going to require even more potential drugs and treatments. After the chemo only route was unsuccessful, we only had one option left. We then went with the Stem Cell Transplant option. The percentage survival chance we were given for Stem Cell Transplant after trying the chemo only route was 20%.
When the percentages are this challenging, you need the help of all the heroes you can find, and many you will never meet.
My family has been fortunate and blessed as it has been six and a half years since we began this war against AML. My heart and thoughts are with every family who has to fight their own war against their own boogeymen.
The Real Heroes
Remember, this story is not about me, and it is not about you. This story is about the real heroes of COVID-19 and AML and every other medical challenge we face as humans.
Who are the heroes?
- The kind and generous folks that donate their blood, platelets and stem cells to help others that they will most likely never meet.
- The nurses, doctors, pharmacists, and hospital staff, and all of the medical support staff who give their day in and day out to provide our loved ones with the care they need to survive.
- Your family, friends, and colleagues who help you and your family daily in numerous ways while you are on auto-pilot trying to shield your loved one, and provide for your family and make sure you have health insurance, a place to sleep, and food to eat.
The heroes are real people with their own lives. They are forever part of our family. Thank you for all you have done and continue to do. We love you all.
This part is about you and me and choices we make
Are you going to a bar or event tonight to celebrate life? Do you know if you will pick up an invisible boogeyman to give to one of the heroes above?
I’m sure the heroes will be fine. They’ll stick it out for a couple weeks at home if you get them sick, and then get back to their jobs in a couple weeks when they’re well. But if a nurse or doctor or pharmacist can’t go to work, and can’t help a patient in their fight with AML or some other horrible cancer or disease, maybe their germaphobe shields won’t matter. Maybe it will only mean a half hour or hour longer to get the blood transfusion ordered from the new intern who is on call because the doctor couldn’t make it. Maybe the on call pharmacist will miss the note about making sure all medications are gluten free. Maybe the healthy person who would otherwise be donating life saving blood, platelets or stem cells will just have to wait a month or two before they can give them again.
Maybe this will mean the difference between life or death for someone else.
The night out or event you really want to attend can wait a few weeks or months. Have a drink at home and celebrate life with friends online and don’t risk those immediately around you. Take the appropriate precautions as indicated by the CDC and health professionals.
If you just happen to be hanging out temporarily with the boogeyman, please keep him to yourself. The person you may unintentionally harm with your personal disregard may have a face, a name and a family who loves them and wants them around for as many years as possible.