“To me there are three things everyone should do every day. Number one is laugh. Number two is think — spend some time time in thought. Number three, you should have your emotions move you to tears. If you laugh, think and cry, that’s a heck of a day.”
– Jim Valvano
WE CALL IT THE HOTEL, but make no mistake it’s very much a hospital.
Cold. Sterile. Corporate. Every day it’s where Obamacare and big business and big pharma and the best and worst of our society meet under the banner of “healthcare.” It is its own education in the ways of the world and life in America in 2015.
Full of sick people. Full of people fighting for their lives and the good people inside the walls in various shades of blue and green scrubs and white jackets who are trying to keep them alive.
Bad food. Bad cable TV. Awful towels. Great nurses. Amazing doctors. A friendly support staff. Parking with little cards that spit out of a machine and act as an ATM. It costs $6 a throw (even after you purchase the little green books…it was $5 last year, so it’s only a 20% bump) and I park twice a day. You do the math.
Even down to the gaudy, shimmery marble lobby, it’s a lot like five-star hotel – Jenn maintains that you do get 24-hour room service, a butler and several maids to wipe down your room twice a day. Anything you want and a button to push to get it. The bed even adjusts.
I call it the factory of extreme hope and sadness.
I see the best and worst things in the world here every day.
My wife will be living here again for the next month and beyond. We’ll be here virtually every day for the next six months even after she comes home.
Rest assured, she’ll be fighting for her life every day.
This leukemia thing is hard. It’s heavy lifting. The cancer diagnosis the first time was brutal. The long journey back to safety and health came to a tab of well over a million dollars the first time and lord only knows where the end of this nightmare lies.
But you can’t even begin to think about the drugs, the hospital stays, the bills, the expense, the insurance issues (and we luckily have excellent insurance because her job at Verizon and the people there have been amazing) or the risk. The sheer volume of people, hours and science involved in saving her life a second time boggles my mind as it did the first.
There are 137 different types of blood cancer in the world. And, as smart of a guy as I think I am sometimes, I’ll never understand much about this because it honestly makes me queasy as hell.
There’s lots of sitting around and waiting and time for thinking. Lots of tubes and bags connected to Jenn. Lots of very sick people with masks everywhere you go. Lots of really freaked out family members in the lobby, often sobbing and in a state of shock the way I was the first few days last year.
And then there are those victims’ extended friends and families on the outside wondering about prognosis and medicines and cancers and answers. All of them Googling buzzwords, worrying, talking on social media and inquiring as respectfully as possible.
The question you want to ask and the only real question is: “Will she be OK?”
We will always believe that she will survive. As Tug McGraw said, “Ya gotta believe…”
And every day – all day, really – caring folks are asking me the same question:
“How is she feeling?”
That answer is pretty simple: “Probably not well as you want her to be feeling.”
She has cancer. They’re dumping various poisons and toxins (aka chemotherapy) into her bloodstream. The nurses wear rubber suits as they administer it into her bloodstream. She’s always an hour away from feeling like garbage even when she’s feeling semi-OK.
Mouth sores, bleeding, breathing issues, heartburn, nausea, diarrhea, headaches and extreme fever – there’s seemingly a pill or a bag full of medicine with fancy names for all of ‘em – and we’ll see it all just like the last time.
And those are just the physical pains. The emotional toll and time and the possibilities can all sap you of your desire to live and fight.
We won’t let that happen.
Call us eternal optimists but we kinda refused to believe that this could happen the second time. But, our doctors did tell us last year that because she didn’t experience any graft vs. host disease (GVHD), she was statistically far more susceptible to a relapse.
So, do you want the awful rash and all of the risk and pain that comes with it or not?
Because she didn’t experience GVHD last summer, this relapse occurred and she’s got cancer in her body again. It was simply dormant over the last 15 months.
Last night, I met the couple in the next room. They look to be 40. They have three kids: 10, 8 and 6. They live in Virginia. She relapsed three days ago after five years of being clean. The husband is ashen. He’s an hour from his family, sleeping in a cot next to his wife after battling this thing when all three of their kids were toddlers. Now, they’re here again in an in a similar state of utter disbelief.
Behind every door, there’s a story here at “The Hotel.”
So many folks don’t understand what’s happening with Jenn and given the complexity, we certainly can relate. We’ve been battling this thing since March 20, 2014 and I’m still learning nuances every day.
It took her doctor 45 minutes to explain our current situation earlier this week and I’m going to try to explain as well as I can here:
Her leukemia, an extremely rare form known as acute bilineal leukemia (ABL), is back. It is the same cancer she had 18 months ago. Because the chemotherapy got her to remission (which means “no current signs of cancer”) last April, they’re using the same protocol and believe that it will work to get her clean again.
Our first goal is to get her to remission.
Instead of being prepped for a second bone marrow transplant, her doctors are using a different method to cure her this time. We are going back to her original donor in Germany – the same guy who wrote THIS LETTER in the hours after her saved her life last June. We will not ask him for bone marrow this time but instead for blood, a much simpler request and procedure.
The real need is for lymphocytes, which are white blood cells that she needs to enact this graft vs. host disease (GVHD) that would cure her.
Essentially, they need to get her very sick in order to get her better.
We are playing with fire here. You need GVHD in order to fully overcome the leukemia and have your body adjust to a new immune system. But GVHD can also be life threatening.
When it comes, she will experience a total body rash that will apparently burn like the gates of hell.
“It will be a complete rash from head to toe,” her doctor told us. “It’s not subtle.”
We felt blessed that she didn’t experience this awfulness the first time but it inevitably means that she’s back here with leukemia again and the goal of the doctors is to get her