holiday season. (And we hope you please use the www.giveaspit.com app when you’re shopping this season to help our friends at There Goes My Hero.)
The rest of the journey is truly a mystery but we’re going one day at a time.
Many folks have asked or written about Jenn’s condition. With my radio schedule and work responsibilities, I’ve done my best to keep those who love her or are interested in our cancer journey in the loop with these missives.
So, while I have your attention, here are some more random notes and observations and things on my mind that I think will help add some clarity and color to our journey:
* There is nothing more disgusting and/or disturbing than to be in front of a building where everyone is inside fighting for their lives and there are other caregivers and patients tied to poles in front of the building smoking cigarettes and a sign that declares it a “smokefree campus.”
I’m calling total bullshit on that. It’s a disgrace and smells foul – like BWI Airport on a hot, hazy morning under that awning where you can get cancer just walking to your shuttle. Hey, Johns Hopkins – and any other hospital that allows the front doors to become a giant, nauseating ashtray – shame on you!
You should and can do better.
* I’m pretty sure that I have the squeakiest, cleanest hands in North America. My wife has no immune system. Her life depends on clean hands so if you see me out over the next six months, we’re doing elbow bumps – not handshakes or hugs. I’ll be the guy using Purell like Lester Hayes used Stickum.
* One more note of common sense and decency: if you ever go near cancer patients – or if you’re a nurse, caregiver, fellow elevator rider or are anywhere inside of a hospital – please don’t wear perfume or odiferous scents. This makes you a complete and total insensitive asshole – making people who are already really sick puke at the smell of you in the place where they’re trying to heal. One out of every three people I’ve seen at this hospital for 18 months are fighting for their lives and wearing masks and/or bald. And every day someone smells like a poisoned flower garden (or just a stinky old lady) in a confined space here and I. Just. Don’t. Get. It. Honestly, there should be signs all over the building about this because it’s rampant and dreadful.
* My wife is surviving on a steady intravenous diet of B-Positive blood and platelets. If you give, thank you. If you don’t, please consider it. Behind all of these miracles and this angel in Germany, are a bunch of regular people like you who’ve given blood and are keeping people like Jenn alive every night. Without your blood, they die. Pretty self-explanatory. And very appreciated!
* On a personal level, every little nerve is dull. I called myself a zombie last week and I’m sticking with that description. I find it far easier to write about her journey than to relay it one-by-one – or worse, face-to-face. It’s very, very hard to look at people who love my wife and tell them “how she’s doing.” It’s one of the hardest things I’ve ever had to do so I’m not out much and very socially awkward/emotional when I am in discussing Jenn’s illness.
It’s hard to explain, but I’m not finding baseball to be as compelling. Or, football to be as exciting. Or, hockey to be so captivating. Or, life to be as good these days.
Last weekend we were supposed to be in San Francisco having fun. Our favorite restaurants, a little shopping, some margaritas and Mexican food, some dim sum. This weekend, we were headed to Phoenix for some fun and Ravens football.
Instead, we remember the fun we were having in life before all of this cancer stuff took over.
And there are the pics from other Phoenix trips.
It’ll be eight more years before we go to Phoenix or San Francisco to see the Ravens. Then, there’s the Super Bowl in January that she clearly won’t be attending and is on “hold” for me and my job.
Everything is “on hold” and “day to day” here at The Hotel.
But there’s no pity party here.
We ain’t got time for that.
Jenn is walking laps when she can. Drinking what she can, when she can. Hitting the little drug junky button to soothe the pain. She’s tough – tougher than anyone I can imagine, really.
And it sucks royally – all of this!
But then, when we need a closer view at our reality, she and I walk down to the second floor and see bald kids walking around with poles with their parents.
And, suddenly, you can’t feel sorry for yourself.
You just can’t.
Jenn has a chance – a real chance to escape this leukemia grip and live a normal life. She just needs to stay strong, not get sick and keep fighting.
Here at The Hotel, you’re always one elevator ride away or a trip down the hall to the bathroom past another poor soul whose circumstance isn’t as good or prognosis isn’t as good as my wife’s.
Many folks don’t have a donor to save their lives so they sit and fight and wait.
Get on the bone marrow registry NOW!
We also learned last week that Jenn now has EIGHT perfect matches in the world – up from the original TWO donors 19 months ago. It goes to show that all of our hard work is paying off in some way for others in the future. We believe in our cause.
The second battle with cancer is definitely different from the first time – in almost every way beyond familiarity. The nurses, the doctors, the halls, the room – every memory that we tried to forget – has come rushing back like some very fucked up, spacey version of The Twilight Zone.
Except that it’s real.
She’s really 19 days back into this journey. She’s bald. She’s frail. She’s sick. She’s fighting. It’s not easy.
Next Thursday night, we hope to save her life again.
And this time have it stick. For good!
Keep the faith!
We are…
