IN MAY I started to get the idea my time left on the remission clock was running out. I suspected as much in the Maritimes where I was feeling beat after a mere six days on the road. By June I knew for certain, when, on Father’s Day weekend, Jonny and I were working on the building in Vermont and it hurt to carry a lousy half-sheet of plywood up a ladder.
My lymphoma was presenting exactly as it had in 2019: inflammation discomfort in the nodes and lymph tissue behind my right collarbone, under my jaw, down the right side of my neck, tenderness under the bottom rib.
If you have my particular kind of blood cancer you have it until the day it doesn’t matter what you have. Science can knock it down with chemo and send it into hiding for a time, but that’s about it.
The kind I have (kind I’m known to have as of this writing) typically comes back meek, slow and sneaky. And then there are the less common cases where your lymphoma’s a big boy now and has got the long knives out.
Won’t have an answer to that question until the biopsy. They want it from one of the nodes around my aorta, down low in the belly where it branches into the femoral arteries.
This second onset has better timing, I’ll give it that. The problematic phase catches me here at home. That’s convenient.
First time around, I suspected it, ignored it, rode 14,500 miles up to the Arctic Ocean and back while cooking a stage 3 blood cancer. Pam thinks the cancer must be why I fell dead asleep at 60mph in Saskatchewan, woke up riding the motorcycle across a farmer’s field. Who knows? Maybe I just wasn’t sleeping well on picnic tables, despite that I generally feel as if I do.
Pain-wise, the lymphoma didn’t slow me down much until I was maybe 10,000 miles in, had been to the shore of the Beaufort Sea in both the Northwest Territories and Alaska and was on my way back. It started to become a problem around the time I got down to British Columbia. Camped there for a while with my friends Bob and Janie. I don’t think they ever noticed the lump in the side of my neck. I never mentioned it and they never asked. Anyway, I thought the hurty/ouchy body parts were more of a mechanical issue: a consequence of coming off the motorcycle when it’s not standing still. Oops…. Part of what you sign up for scrambling around on wilderness roads.
Visited with Bob and Janie for a while, then the final leg of the journey: home to New England with my neck, right shoulder and arm sore enough to make me think I must have cracked my right collarbone.
On the day I left Tete Jaune Cache I couldn’t back up the bike an inch; couldn’t bear to put any pulling pressure whatsoever on the right handlebar grip.
So anyway, rode for home with the sore wing, six days, seven days, whatever it was, 2,900 miles, that was a barrel of monkeys.
Then seven months in chemo, the bendamustine, the rituximab.
Bendamustine’s being phased out in favor of newer, more experimental drugs, I’m told. And not just because time marches on, as it must, but because it’s considerably unpleasant, as you may imagine, to be shot full of nitrogen mustard, a compound famously deployed as a WMD.
So this spring I suspected the cancer was back in business. By June I knew. Symptoms started on the right and were moving over to the other side when we were in Kennebunkport, Maine for a family getaway.
My plan, since May, had been to let it keep until August 9, next scheduled oncology check, next regular round of blood labs. Nobody needs to know until there’s something to know.
On July 31 I happened to mention it to Scott Patterson, a friend in New Brunswick, Canada; mentioned it in passing only because it was relevant to the conversation and I knew it wouldn’t get back to the family.
Scott’s a deputy chief of police in Fredericton. We met eight years ago motorcycling in Newfoundland. I was there solo, had been up in Labrador, ferried over to the rock from the north; Scott had come up from the Nova Scotia side with a few other riders. We all met on the road to Channel-Port aux Basques and talked all things motorcycling on the ferry south.
So this year, Scott and I were talking about riding one of the off-road trails here in the east, trails that run from Tennessee to Maine, the MABDR, the NEBDR. My friend Will Stenger in Pennsylvania was interested. So was George Versloot, a friend of Scott’s in New Brunswick.
George and I rode together in the Northwest Territories four years ago, from Tuktoyaktuk to Inuvik. He split out of there for Prudhoe Bay a day or two before I did. I haven’t seen him since but have kept tabs on his motorcycling adventures through Scott.
That’s the background. Instead of me telling this whole story again, here it is as an epistolary narrative: my conversation with Scott, lightly edited for sensibilities on the delicate side.
It started with me hailing him in regard to trail conditions between New York and Maine.
July 31
The NEBDR is said to be all washed out from the serial downpours of recent weeks. Vermont got 2 months worth of rain in a day & a half.
July 31
[colorful expletive]… supposed to leave to do that on August 18.
July 31
Well I heard it third-hand today from a fellow I know in Pennsylvania, a MABDR veteran like yourself. He wants to ride the NEBDR next. Says his friend got the washed-out word from their website. They must have a message board I guess?
July 31
Yeah George heard the same…we’re still gonna head down and ride the parts we can, or say [colorful expletive it] and head for the MABDR again.
July 31
Take notes! Maybe Will Stenger and I will cover the same ground some weeks behind you.
More likely Will. I’m anticipating shit news from oncology on August 9, but we’ll see. I’ve had a sneaking suspicion since May that remission’s about over.
Nobody knows that, amigo… mum’s the word.
July 31
[colorful expletive] man…don’t know what to say, other than don’t throw in the towel.
I appreciate you sharing and hope you’ll keep me in the loop, and yes, absolutely, mum’s the word.
August 1
Haven’t decided how much I want to tell the oncologist. I’d rather have him look at the bloodwork and say uh-oh… keep it real scientific-like.
I definitely am symptomatic again though. Good thing is I don’t have to ride home from BC with a hurty collarbone this time.
August 8
Good luck tomorrow, man, thinking about you and fingers crossed
August 9
Thanks, Scott. I did the bloodwork today.
Pretty amazing system they have nowadays; in the 20 minutes it takes me to get home the lab results are already done, I can access them online.
No idea what any of them mean but I looked at the graphs from November 2020 until now. Ten different things they measure for, abbreviated as WBD, RBC, MCV, MCH…
A couple of them that were trending in one direction for the last three years are going the other way now but are still in the normal range. One has gone outside the range, MPV, dashing my chances of being named Most Player Valuable in Spanish baseball for all I know.
I suspect the doc will say, well, it would have been nice to get six or seven or eight years post-chemo but you’re getting three, so now we’ll keep an even bigger eyeball on you, instead of 6-month checkups we go back to every 3 months, until one day bruisers in white coats jump you when you come through the door, stick a tube of liquid mustard gas in yer arm all over again. Cue the Hollywood “NOOOOOO…”!!
Anyway… I’ll find out tomorrow.
Today, actually. Just woke up. I fell asleep on the couch around 10 watching Nazis invade Poland.
Took Pam and her sister to the train station yesterday, they’re in New York until Friday on their annual girls’ trip to the great magnetic rock. They have fun. Shows, restaurants, shopping… I think tonight they were going to the Michael Jackson show, which, you know… why? 🙂
If she knew I’ve been having symptoms again all summer she’d be here obsessing over it, same for her family reunion on Flanders Bay last weekend, and on the getaway we had in Kennebunkport before that, all the way back to Mother’s Day and Fundy Park, so… that’s why I don’t tell her anything.
What’s happening with the NEBDR? You must be on the road now?
August 9
Well that’s not necessarily as bad as you thought so take it for what it is and just keep truckin.
We don’t leave for the BDR until Sunday August 20.
Let me know when you hear back from the Doc.
August 9
Once more unto the breach.
Doc wants a PET scan, biopsy, see whether it’s the same animal. I told him I’d just as soon wait six months, see what’s going on then. He said he could predict the outcome. He hasn’t seen it hint at coming back and then fail to follow through. If it’s back it’s back, the question is: in what form is it back?
So anyway, this whole spring turning to summer thing worked out okay. It wasn’t an acute enough problem that Pam couldn’t be kept unaware and left to enjoy her summer. So I’ll tell her what’s what when she gets home from her girls’ trip to NY and no harm done, we go from there.
Keep me advised on your NEBDR travels, bud. Or MABDR, should you and George opt for a more southern route.
August 9
So not to sound like a parent or anything…but if they identify it sooner rather than later, doesn’t that help get out in front of it and start the good fight now as opposed to waiting six months when it may be a tougher animal to kill?
August 9
Oh yeah, definitely. I probably could have said that with more clarity. I told the doc to schedule whatever he needs to, I’ll be there.
I can’t leave Pam in the dark for six more months, not when it potentially has consequences. And I can’t tell her the doc wants diagnostics but I’ve decided to put it off, there’d be no living here in peace, man. She’d swoop in like a bird of prey 🙂 Not to mention her squadron of allies, D’s 1 through 3, they’d all gang up on me.
So…
On August 12 I told Pam what was going on. She boohooed a bit. We agreed to hold off on telling the girls until there was medical imaging to go by.
That weekend, back up to Vermont to work on siding. Told you about that here…
Scott and George saddled up that Sunday and invited me to meet them on the trail somewhere. Didn’t seem like something I could pull together; best to concentrate on getting answers here.
They rode two days of blacktop to Hancock, New York, where they picked up the south end of the trail and started riding north again.
The NEBDR runs about 1,250 miles between New York and Maine.
Scott and George covered 134 miles the first day, camped for the night in Andes, NY.
This is the easy part. They also ran into sections that were nothing but rocks, more suited to motocross.
They met a couple of guys on 650-class middleweight bikes who had started out with a group of five. Two had damaged their bikes too badly to continue; the third got hurt and was done with it.
Then, on August 24—Adventure strikes! That’s what you call it when things go wrong and you’re privileged to test yourself against adversity.
The front suspension of Scott’s R1200GS gave up the ghost. No compression or rebound damping whatsoever. Now he’s riding pogo-style on the spring, hearing metal on metal, thinking less about what he’s doing, more about the bike coming apart, hence he’s picking himself up out of the dirt half the time.
Lost it on a sandy curve, almost dropped the big GS nose-first down a hole 12 feet deep.
Clearly, the bike’s unrideable off road with the front suspension gone, that’s settled. The question becomes: do you really want to find out how unstable it can be on the highway?
That was the end of the NEBDR. Scott and George got out to the blacktop and headed north on paved country lanes.
They got home to New Brunswick late on the 25th.
September 26, adventure from the get-go down here: another ride through the Positron Emission Tomography Time Machine.
They prep you with a radioactive glucose IV, the operator slides you in, cancer cells emit gamma rays as they metabolize the sugar bait, that tells the scanner where they are, the operator slides you back out, and into, for better or worse, your future.
Via text later that day, I resume the thread with battered-but-happy-to-be-home Scott:
Trip through the scanner cost $7,109. Good thing I’m an old [colorful expletive] with Medicare coverage.
[colorful expletive]
Pam dropped me off at the hospital so I wouldn’t have to futz with parking. When she came back to pick me up, first question, naturally: what were the results?
Pretty bad, I said. The worst they had ever seen. Two radiologists lost heart and quit the department.
I’ll bet she found that as helpful and funny as Jen does lol
Another good one: Are you going to finish the woodwork in the house before Christmas? No, your second husband’s gonna have to get to that.
🤣
Yesterday I took a stab at deciphering the scan report (they had posted it to the patient portal the previous evening) then it was time to tell the girls what we know and what we mostly don’t.
The doctor who interpreted the scan describes the lymph nodes around my aorta as “intensely FDG avid.”
FDG is the tracer, the sugar bait. The scan can tell how eagerly the cancer goes after the radioactive glucose. Mine appears to be keenly interested in eating. The avidity, as it’s called, was rated 5 out of a possible 5. That may mean something, it may not; it’s one bit of information that gets put together with other bits.
“New intensely FDG avid lymphadenopathy above and below the diaphragm, in keeping with recurrence of known follicular lymphoma. Given the intense FDG avidity of the para-aortic nodes, transformation to a higher grade lymphoma is possible.”
The biopsy will answer that question. I’m told my bloodwork looks pretty all right; what’s of greater interest is the hungry nodes that showed up on the scan. The doctor who read the scan rated it “RADCAT 4: priority result,” which basically means: Don’t ignore this, investigate further. So that’s where we are.
If the biopsy turns up my old friend from 2019, that’s one thing; if it’s something different, that’s different.
Will let you know.
Tony DePaul, August 30, 2023, Cranston, Rhode Island, USA
