Bryce
Hurry Up and Wait
Prior to leukemia pt 1, patience wasn’t a virtue I subscribed to. But you learn to adjust — and ultimately come to expect to wait, and wait, and wait some more… and then sprint… and then wait again. Side note on the waiting that I didn’t appreciate until I was in it. You want a doctor that’s not going to rush you. One that spends the time you need for you to ask questions and feel comfortable with the plan.
Last week, it felt like we were a well oiled leukemia diagnosing machine:
Labs Tuesday → Bone Marrow Wednesday → Results Thursday → the Good Dr. Lockwood Friday → MD Anderson Tuesday.
You can’t move much faster or more efficiently than that.
We were told I’d see Dr. Jabbour on Tuesday or Thursday, pending insurance approval. We made plans for Alice, packed our bags, and prepped as if we were leaving Monday morning.
Monday rolls around, and I get a call from MDA. They have an opening — for Tuesday, June 24th. Say what? Nah, dog. That’s not going to work. Didn’t you see my BMB? I’m 54% leukemia; I don’t have time for this. The scheduler says she’ll talk to the doctor and call me back that afternoon.
When she calls back, she says I’m now scheduled for Wednesday, June 25th. Dude. “This morning you were offering Tuesday, and now it’s even later?” “Yes, the Tuesday spot was taken.”
I once listened to a chapter of the aptly titled Never Split the Difference: Negotiating as if your life depended on it. Kinda funny because my life does depend on it. I think one of the golden rules is never accept the first offer. No idea if that was actually in the chapter I listened to, but it feels like common sense. I pushed back, passed on Tuesday’s appointment, and was rewarded a spot on Wednesday.
Tuesday morning rolls around, and I get a call from the scheduler – there was a miscommunication. They can see me Wednesday, June 18th. Tomorrow. At 7:00 AM. Hallelujah. Just imagine how powerful my negotiating skills will be once I listen to the whole book?
Thankfully, I have flexible in-laws, and our bags were still packed. MB and I tidied up the house and were on the road by 9:30.
Day 1 – Dr. Jabbour
We arrive at 7 AM and were greeted by an overwhelmed valet attendant (first valet is free. They try to get you addicted). MDA feels like an airport — people going in all directions, drop offs, pick up, buses coming and going, general confusion. It’s a bit overwhelming, and the thought of navigating it all with a hemoglobin of 7 and no immune system feels impossible. It was the first gut punch if you will where I really thought about how hard this is going to be.
Finally, I got to meet the man – Dr. Jabbour. He seemed like a kind, humble gentleman. A bit hard to understand at times with a mask on, but warm.
We went through my background, and then he explained the trial he wants to enroll me in. As best I could follow, it’s a combination of reduced intensity chemo, two types of immunotherapy, and then CAR-T. He mentioned the word “curable” multiple times – curable without a stem cell transplant. Transplant would only be the fallback if something goes sideways.
Participation in the trial hinges on whether I have a CD22 marker, which my previous bone marrow biopsy showed as negative. I told him that. But according to Dr. Jabbour, 90% of ALL patients have the marker. He wasn’t impressed with the Arkansas bone marrow biopsy (which I’ve always thought lacked detail) and ordered a new BMB at MDA.
After he left, a nurse came in with a research assistant (or coordinator or something) on the phone to explain the trial. The regular research assistant was out on PTO, and this woman was subbing in. Whatever understanding I had of the trial – these two completely obliterated it. They didn’t know if I was newly diagnosed or relapsing. They didn’t know if the chemo would be reduced-intensity or full-intensity. They didn’t know if I’d be doing Blinatumomab for 14 or 28 days. It was a total cluster. At the end, they asked if we had any questions… and honestly, I didn’t even know what to ask because zero specifics were given. I’ll ask questions if the CD22 marker comes back positive, and I end up in the trial.
I’ve had numerous BMBs. Highlands gives me conscious sedation with the biopsy. UAMS once gave me a push of morphine (rode the dragon) and then did the biopsy – honestly, I still kinda dream about that one. MDA raw dogs their BMBs. A shot of lidocaine, 60 second wait, then bam – pulling that sweet honey marrow and bone.
I’m in a cancer support group on Facebook and never understood why people complained about BMBs – mine always led to wonderful naps. But now I get it. Today’s wasn’t horrific or anything, but it was definitely unpleasant. I’m pretty sure I yelped when she started pulling the marrow. That said, start to finish it took 5–10 minutes, and I was able to drive afterward. Peak efficiency.
Future
Tomorrow is going to be busy. I have labs then we meet with the transplant doctor, donor coordinator, financial counselor, follow up with Dr. Jabbour, and then imaging. It’ll be a full day at MDA, but we’re coming prepared with snacks.
I think we found a place to stay, at least initially for the first 30 days. It’s about half a mile from MD Anderson, fully furnished, and allows a month to month lease. It may not be the perfect place but it buys us some time to look.
Sending love and prayers ❤️🙏
This sounds so overwhelming. I hope they find the CD-22 marker and can explain the trial better and you can get to work soon on being less leukemia. As always, your writing is so good. I am laughing and cringing and frustrated and worried with you. We’re thinking of you constantly out here. Thanks for the update!
It’s a bit overwhelming but we’re getting through it. I’m sure a month from now it’ll all just be business as usual.
Ditto everything what Anne said.
Overwhelming is an understatement. Bryce, you describe things so well that I feel I’m there with you. Honestly, you could forget about the accounting/finance stuff and write books instead.
I googled Dr Jabbour. First thing I saw was he got a 4.9 out of 156 reviews. Good start. He sounds amazing. Reading about him gives me great confidence you’re in good hands.
Thinking about you and Mary Beth every day. Thank you for writing this blog and updating all of us who love you.
Always praying for yall. You’re a great writer, I literally cringed and twitched when you said you yelped. I’m happy that you found a place to stay, so at least that stress is removed. Love y’all, xoxo!