Go ahead and get some coffee (or wine) and make yourself comfortable. I have a story to tell. Three actually.
FRIENDS—
On Tuesday, April 11th we went to MD Anderson for Patrick’s appointment with Dr. Wang to go over the results of his colonoscopy from the previous week. You remember. The 40 hour fast he endured and all that.
So we’re sitting in the waiting area of the sixth floor Lymphoma Department as we’ve done many, many times. We brought Easter cookies for the ladies at the front desk. Patrick had his usual, playful conversations with the nurses who draw his blood and check his vitals. At this point, Dr. Wang is on schedule and we’re going to see him around 2pm. So we’re sitting, waiting, perusing the crowd and freezing. Always freezing.
Patrick notices a guy across the room. He’s young, like Patrick, and healthy looking, like Patrick. Note – On this floor, young means under 65 and healthy means no mask, tubes, wheelchairs or otherwise obvious signs of disease.
Patrick has this rare talent for knowing who people are when most of us wouldn’t take a second look. He once spotted a guy across a busy restaurant in L.A. that he was sure was the same guy we had very casually met TWO YEARS prior at a bar in Napa. It was. They talked. They now talk regularly. It’s uncanny.
So anyway, he whispers to me his theory about the guy across the room. I say sure babe, maybe you’re right. Go talk to him. Before he can decide to do that, he gets a text. It’s from Brant, a man who he connected with through someone who knows someone who knows us. They’ve been texting since the fall. Brant lives in Colorado, also has mantle cell lymphoma and is a couple months behind Patrick in the trial. (I wrote about him in the October 23rd post called “Patrick’s First Report Card”)
They’ve never met.
They’ve never spoken.
The text from Brant basically says “hey, when are you in Houston next? We’re here now.” Okay. You know where this is going, right? Patrick looks up, makes eye contact with that guy across the room and laughs.
Of course it was Brant. Of course we’ve been sitting across the room from him for how long? Of course Dr. Wang is now 90 minutes behind schedule and so that’s how much time we had to talk and laugh and really get to know each other. His wife was with him, and she’s now my soul sister because she gets me and I get her and do you have ANY idea how badly I needed that?!?!
Thank you God for the little gifts you drop in our laps just because you can.
Sidenote – Brant was prompted to text Patrick at the very moment because his wife was encouraging him to go talk to that guy over there who looks like he’s about your age. And he thought, that reminds me, I should text Patrick. That really happened.
Do you realize we almost missed meeting each other? I cannot even imagine. If you ever feel prompted to talk to someone, do it.
I cannot tell you what this encounter did for the four of us. How it impacted our lives. How it changed me. I left our new friends that day with a positive outlook because of our time together. I felt stronger, happier, and lighter. And Brant got fantastic news too, so we had lots of reasons to smile!!
Now, the texts between us are not sent out to a stranger across the miles, but to a friend. We know each other’s faces, laughs and stories. And we know that we’ll meet up again soon because our treatment schedules at MD Anderson are magically syncing to one another’s. Which leads me to the next story…
FATE (a.k.a God’s timing) —
As “fate” would have it, Patrick completed part one of the clinical trial the very same week that his other “MCL friend,” Tom, was completing part two. So, after our appointment with Dr. Wang where he confirmed that the colonoscopy was negative and Patrick had achieved…
A COMPLETE RESPONSE TO PART ONE!!!!!!!!!!!!!!!!!!!!!!!!!!
…we were sent directly to admitting to begin part two immediately. And by immediately, I mean five hours later when a room became available. Naturally. But that’s okay. Not complaining. Because we ended up with a nicely situated, spacious room two doors down from our good friends Tom and Chrissy. Another gift dropped in our laps.
What better way to start chemotherapy than next door to a friend who is finishing the same treatment and paving the way for us to see with our own eyes that there IS an end in sight?
What better way to wrap up that first week than by witnessing Tom give a tear-jerking and inspiring speech to all the nurses, his wife, and us while he rang the bell to signal the END of his treatment?
None. The answer is none.
There is no better way to start this scary process of five day, inpatient chemotherapy than to be accompanied by new and dear friends who have quite literally shown us the way and given us hope that WE CAN DO THIS.
We wish them well as Tom recovers from his final round of chemo, grows back his hair and begins to enjoy life without cancer.
Can I get an AMEN?
The Fifteen Floor –
So, what’s it like on Floor 15 of the main building? The particulars of the “inpatient tower” are this: large rooms, private bathrooms, plenty of space for one guest to stay overnight with the patient, room service for meals, televisions with free movies, family rooms, quiet reading rooms, clean hallways, and most importantly, AMAZING nurses and doctors taking excellent care of their patients.
But there are sobering moments that remind you this is a hospital, not a hotel.
Patrick being connected to tubes through a port in his chest. A pole holding bags of toxic chemicals that go everywhere he goes, 24 hours a day, for five straight days. Sleepless nights because they check his vitals and draw blood a lot. A LOT. Exactly zero privacy regarding all manners of bodily functions. Conversations with doctors about what to expect when we go home. Piles of medication we take with us when we leave, including a Neulasta patch attached to his body.
But the hardest, most daunting moment was when they gave him the doxorubicin. Watching the “Red Devil” drip slowly into the body of my beloved wiped away the smiles in the room. It’s the one that makes you lose your hair, and it takes the final 24 hours of the week to be fully dispensed. The clear ones just weren’t as hard to look at. For all we know, they just look like fluids, saline or nutrients. But not the “Red Devil”. It’s chemo and you know it’s chemo. And you know what it’s doing. It’s killing hidden cancer cells. But it’s ugly all the same.
All that to say…Patrick did well and felt well during his first cycle. By the end of the week, though, he wanted to break away from that pole and run like Forrest Gump. This is a mental battle as much as a physical one. Read, chat, work on the laptop, make calls, sleep, watch movies. Whatever it takes to pass the time. Oh and walk. They want all the patients to walk three times a day. No problem. We walked. We made sure his chemo pole was charged up every morning, we checked with the nurses about his schedule for the day and then we BOLTED. If they said he didn’t need to be in his room until 4pm, we left and didn’t come back until 3:59pm.
The pole can go pretty far too. Downstairs, outside, down the street, across the street. We could probably make it to NRG Stadium if there were sidewalks. It is a little cumbersome, dragging the pole along the city streets without it falling over. No one even notices you though. It’s MD Anderson after all. They’re used to seeing people wander around with poles. We found some great spots to sit and chill and have lunch. He felt the sun on his face. He breathed fresh air. Anything to feel a little freer than he was. I got out everyday to make a Whole Foods run and bring him whatever he wanted or needed. Gave him some alone time. Gave myself some alone time.
Bottom line, we got through it. Cycle one, we owned you. You’re done.
One down, three to go.
We’re home now and Patrick is making his way through days 7-14 of the 28 day cycle. Those are the dip days, so to speak. He was doing great, but he did have a major drop in white blood cells yesterday. Normal range is 4.8 to 10.8. His came back at 0.9. “Critical low.” So we’re hunkering down this weekend, putting a bubble around him, cleaning everything, and cooking with garlic, garlic and more garlic. And an ANGEL delivered a whole bunch of wonderful groceries to our front porch yesterday. Bless you my darling friend. You ROCK.
So onward we go. Cycle Two begins May 9th. Which also happens to be senior prom week. No doubt I’ll have stories to tell next month too.
Stay tuned and stay well.
ANGIE BURKE 