I’ve been off chemo now for almost three weeks, and I feel pretty dang good. I was initially scared to go this long between treatments, but my oncologist assured me that it would be perfectly safe for me to push by my next dose, especially if it meant I could get away for a vacation without fear of side effects.
I can’t even begin to explain how grateful I was for the reprieve; not only because it allowed us to get away for the week (which includes mine and Rachel’s 20th wedding anniversary on Wednesday) but because it gave me extra time to feel slightly normal.
Well, as normal as a cancer patient can feel, anyway.
My dad took me for a check-in on Wednesday and the all-clear was still a go, so after a sleep study on Wednesday night (more on that in a moment) I was done with doctors until the 21st of June, which is when I have my next PET scan to see how effective this treatment has been, and then my final FOLFIRI dose on Tuesday, June 22nd. Everything else is up in the air after that, a future that I don’t have to face until I’m finished enjoying my present.
And enjoy my present, I will. We’re down on the Georgia coast, in a nice renovated old house that’s just a few houses down from what’s reportedly either one of the most haunted homes in the city or a house that inspires people to peddle pure bullcrap. It kind of depends on whom you talk with, I suppose. But the house we’re in is ghost free.
As far as we know. I’ve heard the upstairs water run two or three times since Rachel and the kids went out for a walk so I could write, so either we have some plumbing issues with the house, or the ghosts have plumbing issues of their own. Either way, I don’t care because for the first time in over a year and change I’m staring at walls that aren’t my own.
We’ve spent most of the day driving, but still managed to have done some exciting things, like eating in a restaurant mask-free because we’re all vaccinated against Covid! We’ve gone shopping for groceries, and plotted out our big daily events for the next couple of days, all in the name of being efficient yet relaxed. Not going to lie—it’s a nice feeling. Just us and some fun and memories for the next few days.
I almost forgot what that felt like.
I mentioned that I did a sleep study on Wednesday night of last week, and in service to mankind, I want to just recap a couple of things that stood out to me about the experience. First, my nurse was a bubbly, chatty young woman named Dykia, but who preferred to go by Kia. “Like the cars,” she said. “That way people remember it easier.”
Kia was very knowledgable, walking me through the process for the evening as she attached wires to nearly every square inch of my head, two on my chest, and two additional sensors on each leg. I listened intently, asking pertinent questions when necessary, when she suddenly stopped.
“I don’t need to explain all this to you, do I?” she asked.
“If it’s part of your protocol, then feel free. It doesn’t bother me.”
“Oh honey, I do this because of the number of people who come through that door and turn off their brain. You’d be amazed at how many folks pretend they’re deaf or don’t understand instructions.”
I assured her I wouldn’t be that amazed. I’ve been around the block a few times, after all.
“Shugur,” she said, calling me the sweetener in a drawn out accent, “I should’ve known better after you filled out every form on my clipboard without me telling you to. That’s a sign of intelligence in this business.”
Kia continued connecting wires to me, then connected the other ends of the wires to a box that she hung around my neck. I looked like someone had detonated an old Radio Shack near me, and I was caught in the debris field.
Naturally, after hooking me up to God only knows how many gadgets, she looked at me and said, “Okay, you need to go pee and then get in the bed because you’ve got to lay perfectly still for the first thirty minutes or the study will be compromised.”
I held up a cluster of wires. “Shouldn’t I have gone before you wired me up like a bomb?”
“Oh no,” she said. “You have to be as close to bedtime as possible before you pee because we can’t risk you doing the pee-pee dance while we’re trying to gather readings.”
I trudged into the bathroom and obeyed the nurse’s order, which—in my recent medical experience—is the safest way to avoid incident. While washing my hands post-potty break, one of the wires popped off my face; I couldn’t tell which, I just knew that where there had been pressure and cold gel, there was now only cold air whooshing past the open space. I stepped out and confessed the gaffe to Kia.
“No problem, baby,” she said, “that LIT-TRALL-LEE happens to everyone at some point before bedtime. Shoot, I’ve replaced more wires than an electrician. This is nothing.”
She popped the nodule back on my face, and helped me into the bed. I tucked a pillow under my knees, to better help me rest by taking pressure off my back. Once I was settled, I could feel a pack of wires pressing into my shoulder blade. I attempted to move the pack to a more comfortable location, and in so doing I somehow broke the wire that attached to my pulse/ox monitor on my left index finger.
Strike two.
Kia came over and MacGuyver’d the snot out of the wiring, pulling out ends and reinserting them into different spots on the magic brick every wire was plugged into. After a couple of seconds, the pulse/ox monitor was back online, and the wire pack issue was resolved by my placing a pillow under my left side so I was effectively tilted to my right, so the wires weren’t pressing into my shoulder as much. It was enough of a respite that I would be able to sleep, so I told Kia we were good to get started.
For half a second I feared she might lean over to kiss me goodnight; she kind of hovered next to me for a moment like she was trying to decide whether or not to go for it. She snapped out of it though and told me to stay awake for the next few minutes because she had some commands I needed to follow, and I had to fight off sleep to follow them.
I agreed, and she went out the door, leaving me in peace for the first time since I’d arrived. A couple of seconds later she asked me to do a series of tasks like look up then down, look left and right, hold my eyes open and then keep them closed. The final command was for me to open and close my eyes on her command. When that was over, she wished me a good night’s sleep and told me she would see me in the morning.
It didn’t take me long to get comfortable, and soon enough I was asleep. I don’t remember any dreams, but I sat up at 5:30AM fully awake. A few minutes later, Kia was coming through the door to remove the wires. After warning me that the removal process was going to hurt—“Baby, I routinely make grown men cry like girls”—I assured her that after nearly a year and half of cancer treatment and living with the disease, I would be fine with her pulling out a little hair when removing a nodule.
“Mmmm-hmmm,” she said, eyes giving me a doubtful look. “That’s what every man says. Then the tears start and I’m suddenly the bad guy.”
She pulled off each nodule one by one, none of which hurt much at all. Kia looked at me and said, “Usually the leg hair ripping out by the root gets ‘em. But you’re proving me to be a liar. You really can handle this.”
After the nodules were off, I had a few papers to sign to confirm that nothing weird happened during the night, and I was able to rate my sleep study experience. Kia kept up the chatter, until finally I realized that I was free to go, she just hadn’t told me yet.
“Are we done?” I asked.
“Oh yeah,” she said. “Is your ride here?”
“Yes,” I said. “She just pulled up.”
“Shoot, shugur, I was just lost in talking to you. It’s not often I get someone in that I enjoy talking to and learn stuff from. I’ve half a mind to take you home with me.”
At that point, I was already up and moving, gathering my pillow and mask and as I headed for the door. She unlocked it for me, and opened it so I could make my way out to Rachel’s car. Kia waved at me and wished me well, then reminded me that I would have my results sometime this week. I waved at her and climbed into Rachel’s SUV.
The moment the door closed, I turned to my wife, and said, “I need to sleep just to recover from her.”
Prayer requests for this week:
For Jason—to have good health throughout our trip—I had some swelling in my feet after sitting in the car for four hours, but propping them up for a bit has helped; for my appetite and stomach to cooperate with me (my lunch did NOT agree with me today, and that made dinner difficult to eat); for my stamina to increase with activity—I’ve been housebound so long, I need the exercise; for our family to create and share some of our fondest memories on this trip and have the photos and stories to prove it.
For Rachel—strength and stamina to continue being the group leader during the trip; for her to feel confident and comfortable with the decisions we’ve made and our ability to get to each activity without any problems; for her to be able to focus on enjoying herself instead of worrying about me; for her to sleep well during the trip (she’s having to share a bed with Jon).
For Ella—to be a good host to her friend who came with us; for her to be herself, and not self-conscious when we’re on the beach or out in public; for her to make memories that last a lifetime and stay with her in meaningful ways; for her to be able to rest and sleep well each night since she’s sharing a room with her friend.
For Jon—to be himself around Ella’s friend and resist the urge to show off or become a third wheel; for him to make memories that last and make him laugh when he thinks of them; for him to be a gentlemanly roommate to Rachel; for him to enjoy the new and slightly scary experiences that we’ll undertake this week.
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That’s it for this week’s newsletter. I know it’s coming out late, but honestly, it was a bit of a struggle to get it out at all. After being in the car, getting tired and cramped, and fighting a stomach that feels like someone poured acid into it, I considered not writing it, but then I remembered how many of you reached out to let me know how much you appreciate each issue.
Knowing that you’ve generously offered me encouragement because of the encouragement the newsletter provides you gave me enough determination to open up the laptop and fire away.
Working on the newsletter gave me enough energy to keep editing my book on writing, tentatively titled, Learning to Write: A Memoir, Manifesto, and Guidebook for Aspiring Writers. I’ve been working on that thing for nearly two years, and the feeling of finishing the book is unlike anything I’ve ever felt in my writing career.
Working on the edits, as much as editing can be painful, has been energizing and hope-stirring. I don’t expect to sell millions of copies or anything, but I sincerely believe that there will be several aspiring writers who will benefit from the insights I share.
After a decade-plus of professional writing, not to mention several years of amateur writing, there are certain truths that I’ve discovered that new writers will love because it will help them avoid some of the worst parts of the writing journey as well as provide them with tips to jumpstart their work so they can experience the best that writing has to offer.
I share this with y’all as a way of keeping myself accountable to the editing. I don’t want to give up and leave the work finished by unpolished. I want it to sing. I want it to be something that people are proud to have bought, even going so far as to recommend the book to others.
I want it to be a work that represents my life.
For the next few days, we’re going to rest, have fun, and I’ll continue to work on my edits. In the meantime, I hope whatever you do brings you a sense of fulfillment, joy and peace. Thanks for walking this journey with me, and as always, thanks for reading.
Best,
Jason
Praying y'all have the best vacation ever!!! Make those precious memories and have fun! Much love! 💜💜💜💜🙏🙏🙏🙏
Hilarious story about the sleep study. Glad life is getting more normal.