I terrify people.
I don't terrify them like zombies or scary movies, but I still terrify them.
I scare them just by walking..... And then starting to breathe heavier, then breaking a sweat and gasping for breath.
I strike fear in them by coughing.
I scare people like a catastrophe that's about to happen, a train wreck they can see coming but can't stop from happening.
If not terrify, I definitely raise people's anxiety.
Even my strongest, stalwart, poker faced friends have had moments of horror register across their face when I'm bent over gasping for oxygen or I accidentally enter a populated area.
I didn't realize this effect I had on people.
At home, I forget I'm sick. I've adjusted to my new normal. I not only function, I thrive. I live an active daily life full of normal routines.
This is what I wanted. I wanted my life back. Few realize the cost that has been paid in day-to-day living with long term disabilities such as chronic obstructive pulmonary disease, because I try to focus on what I've gained.
I sugar coat the truth.
But when I enter reality, the "real world" I so rarely visit these days, I see people that expect healing or remission to mean "all cured."
My treatments have been a double edged sword or like making a deal with the devil, I don't have cancer but I'm not well.
I don't have cancer, but I'm headed to meet a new doctor today to start a new series of treatments that will be weekly for 6 full months.
I'm meeting with this doctor to control what has happened from my allogenic transplant. I switched cancer for manageable graft vs. host disease that would keep my hodgkin's in remission.
Now my graft vs. host disease is difficult to manage and has become life threatening.
The risk of death of graft vs. host related side effects outweigh the risks of a cancer reoccurrence.
My decisions are mostly based on risk vs. benefits. Very simple: do the benefits outweigh the risks?
If both are bad, I follow my gut.
This is harder to explain to people than "I have cancer" or even "I have chronic cancer" it's the "I'm fixed but not better" explanation.
I first really recognized this going to Dana Farber last Monday.
At home, I was busy catering to x and j with his boot and his injury.
I neglected myself.
Before leaving, despite mom's pleas, I left my oxygen.
Big mistake. As soon as I left the bathroom at Dana Farber I turned the corner and ran smack into my marvelous NP, Melissa.
"You're out of breath!" she furrowed her eyebrows, "Where is your oxygen. Do you need oxygen?"
Mom popped up, "THANK YOU! She needs her oxygen."
"Yes" she does, agreed Melissa, who was hopping on the phone to respiratory and grabbing me a wheelchair.
In 5 minutes I was in a wheelchair with my oxygen coming.
I turned another corner to run into my transplant nurse, Pat, "Hill, How are Ya!" she said in her bright, bold, Boston tone.
"I'm okay." I nodded.
"You sound out of breath. Where's your oxygen?"
Again, mom piped in. Again another lecture.
The final lecture came when the respiratory therapist brought the borrowed gear.
Case made, I am sick
will not leave home without my oxygen again. I just forget that this isn't normal.
I WANT TO BE NORMAL!
I walked into the waiting room at Dana Farber looking like the healthiest patient there. I left in a wheelchair and oxygen tank with everybody knowing I'm a big faker. By Dana Farber transplant standards, I'm sick.
I was talking with a friend later in the week about how I never thought I would marry the guy I started dating at 17yo, have a child, big home, and the American dream by 22.
The words, "my life hasn't turned out like I thought it would." snuck out of my mouth.
Then I paused. . . . and laughed and laughed and laughed.
"Life didn't turn out the way I thought it would," says the 27 yo with the wheelchair and oxygen tank. But I never thought about it like that. Life is just a series of events or battles to be overcome one at a time.
In between should be good times.
It goes without saying my life didn't go as planned, but that's not what I was talking about, not even a little bit.
I forget I'm sick. I'm lucky I can.
But I won't be forgetting today. I'm off to DHMC for a CT of my lungs, to meet Ziggy the vampire (the photopheresis doctor who will be in charge of removing my blood and safely returning it at DHMC), and then my hematopoietic dream team Marc and Anna.