YOU HAVE to live around here to know about the Christmas display at La Salette, or as we locals call it, Lotsa Lights. Here it’s not even Thanksgiving yet but Lotsa Lights popped into my head yesterday when the oncologist called up my PET-CT images on a screen.
This lymphatic cancer I have is basically everywhere. It went after the radioactive sugar molecules with an appetite, lit up my lymph system from just under my ears all the way south to Peckerville.
The bride was in the doc’s office, too, got a look at my 3D body scan, slice by slice, then went back to work at the bank and invoked the inevitable Christmas Tree analogy with her friends.
Several options from here.
The one I instinctively want to take is: keep an eye on it. Live with the lymphoma as-is for a while, see whether it’s willing to coexist or will try to break out of its current habitat and start lighting up new areas elsewhere. In which case it would be an all-out war of necessity at that point.
Or, I can go after it preemptively with one of two chemo regimens: two drugs in one, three in the other. Both would involve two days of chemo a month, for six months.
Chemo’s not a cure, but the numbers I’ve seen suggest it would likely give the cancer a good ass-kicking to where it would not want to call attention to itself for a number of years. And then we’d do battle again, if, in the interim, I hadn’t been taken out by that space rock, falling piano, demented texter, etc.
My oncologist recommended chemo for its therapeutic value, obviously, but as a quality-of-life thing, too, given that my pain levels are on the increase. The right collarbone started hurting in British Columbia this summer. It felt like a non-displaced fracture at the time. Now, what is it, 10 weeks later? Not getting any better. To the contrary…
On Saturday the family went apple-picking at an orchard in Smithfield (Macoun and Honey Crisp apples, really nice…) I carried my 7-month-old granddaughter for just a few minutes before I had to hand her over to her dad. I wanted to take a knee. It was quite exquisite pain in the collarbone, fore & aft, and radiating up my neck and into my jaw.
Next day, Sunday, I saddled up the iron piggy and rode just 20 miles out. Stopped to visit a friend in North Kingstown and wasn’t sure I should try to ride home. A few hours later, when things calmed down, I did.
So there’s that.
Our family doctor had a chemistry background before med school, I’d like her to take a look at these particular chemo molecules, see what she thinks and what she recommends.
And now I’m off to Providence for a follow-up visit with the surgeon, the one who scooped a lymph node out of my neck a few weeks ago, for biopsy purposes. Hell yes I’m taking the motorcycle. But you knew that.
The surgeon did a good job. Too good, really. In the mirror, I can see now that he made the incision in a natural crease, so as to hide the scar.
I would rather have added another obvious one to my collection. Chicks dig scars.
Tony DePaul, October 8, 2019, Cranston, Rhode Island, USA
We’re pulling for you, Tony. Two and one-half years ago I had a stem cell transplant to fight my non-hodgkin’s lymphoma. The folks at Dana-Farber are fantastic. Is this an option for you? Unfortunately, as you know, this fight is your new job now. Listen to your body, your doctors, your family. You’ll beat it.
Thanks, Eric. On the other side of this we’ll have to climb the Precipice Trail again. Oh my, when was that? ’84 or so?
There are so many different kinds of non-hodgkins’s. Yours must have been much more aggressive than mine. I’ve heard no mention of a stem cell transplant, just a one-two punch of Bendamustine and Rituximab. The latter is a monoclonal antibody, so maybe that’s not even what we think of as chemo, more along the lines of an immunotherapy.
I feel fine, as long as I medicate the angry B-cell pain in my right collarbone, shoulder and neck. Yesterday I was lugging air conditioners around. Also hung a six-panel pine door and rode the mighty iron piggy a bit.
Very sorry to hear about this. I heard about this on Comics Kingdom. I enjoy your work on The Phantom. I don’t want to be presumptuous, so I’m just posting in case this interests you, Stephen King has a foundation that helps freelancers who often don’t have as much of a safety net as “civilians”:
http://www.thehavenfdn.org/
Thanks for your concern, Ray, and the good word about the Phantom strip. Funny, I started my newspaper career in Bangor, Maine, where Stephen King lives. Rode by his house every day. And one of my editors at the paper was Stephen King’s college roommate.
I haven’t seen King for years. I think the last time was at a press conference where he was endorsing Gary Hart for president! Wow… ancient history.
Yeah, cancer ain’t cheap but we have good insurance through the bank that employs my wife. That’s a great thing King’s doing, I wasn’t aware of it. Most freelancers are hanging out there in the breeze between just getting by and complete ruin.
No prob, just tossing it out there. Glad you’re covered. King started it after Jeffrey Demund, the guy who up to that time was the reader for all his audiobooks, was injured in an accident.
A couple of writers in my orbit have gotten help from Haven. The writer Tom Picirilli came down with brain cancer and Haven was a big help to him and his wife. Ditto for the late Ed Bryant, who started having a lot of heart problems and the attendant complications.
Tony,
You’re on a hell of a road now. I know that you will ride it full on with the best that you have in you. I cannot think of anyone I have known who is more courageous, smart, wiley and savvy than you, all of which are traits that you can use as weapons against what you’re facing.
Anything I can do to be of help to you: say it and it’s done.
Thanks Keith. See you at the Modern Diner one of these days.
With you all the way as you know Tony. When the prayer warriors in the US are asleep, those of us in Africa are already awake. You have 24hour cover. Hang in there.
Thanks, Vincent. It’s good to have a conqueror of mighty Kilimanjaro on my side.
Great, inspiring, and useful writing now. It’s as much a part of your armory as the chemo.
Thanks, Robert. I can’t imagine not scribbling. If I were to cease & desist I’m sure I’d soon be drawing unwanted attention by talking to myself.
The Devil whispered to the Biker:
“You cannot withstand the storm”
The Biker whispered back:
“I am the Storm”
You are the Biker Man. Ride it like you own it.
To South America, as I read between the lines, amigo.
You been following the news from Ecuador? Add that to treacherous Venezuela and the dicey half of Columbia.
Had a conversation with an Ecuadorean tonight. He says things will get worse unless the govt reverses their position on gasoline taxes. He doubts they will though, can’t afford to keep subsidizing the retail gasoline price.
Bloody hell Tony, I actually have no direct personal experience with what your are now confronted with but I do have a riding friend who has recently been down a similar path He chose a Clinical Trial, the best decision he ever made. We are still out riding together and making the most of every day. I’m sure you will carefully consider all options on the table and make a wise decision. On the outside you are as tough as they come but we all know under the skin it would be cutting deep with both you and your Family. Try and make your decision ASAP and not let this Bastard disease control where and when. Thinking of you from over the Pond
Thanks, Glen. I’ll be hailing you on Skype ASAP. Things will start to sort out here before long.
Tony, my heart is heavy. Every week there is another friend fighting for life. I myself was in 2010, hanging in there. I hope you continue this blog as long as u can. We need your words. I’d love to meet you and Pam for a cup of joe. No prayers sent, just soulful thoughts always, that’s how I roll. bc
Coffee sounds good, Brenda, thank you. I’ve got your number on a sticky note on my desktop monitor.
Thoughts and Prayers for you and your family 🙏
There’s always Hemp, I’m a firm believer in it.
Thank you, Ladora. I’ve been reading about hemp, something about the last farm bill opening up the market to domestic growers. I’ll study up on it.
Tone-Man, I don’t know what to say except that I’m praying for you. You and Pam will make the right decision, I’m sure. Attitude is everything. Know that a lot of positive energy is going your way.
Bett-dot-Boop-dot-com… I was sorry to miss the last West Bay lunch. Hope to see you soon.
Hey old buddy. Like your friend Prasad said I too have been soaking it all in and am not very adept at expressing feelings or putting thoughts down in a written manner but I do know I want you around for a long time to come and pray for your best outcome. I know you’ll put forth the effort required to fight this and do so with the same attitude you seem to approach all things with, which is to say a great sense of humor, pragmatism and acceptance of the situation as it is not as you would like it to be at this given moment.
Enough of that. Two of my steady riding buddies bought Africa Twins and both traded them within a year. The overall impression of the bike was fun to ride but within 100 pounds of the GS’s weight and when taking a nap they were an absolute bitch to pick up. That part I witnessed myself when riding with them. The bike lays completely flat on the ground even with crash bars and trying to get some leverage to get them upright was a real pain in the ass. Couple the weight with less power and it became a no brainer for them to sell them. One went to a KTM 690 and the other went to the DR like yours. He had one and went through a couple of bikes and after the Twin went back to one. He loves it. My .02 says put the money into the DR and ride the hell out of it.
I did the MABDR this summer when I had some time between races. Took the GS and slabbed it up to the northern point below Corning, NY and headed back to NC. Unfortunately that pesky big storm (whose name escapes me) came through and I ended up bailing in VA and headed for home to avoid the worst of it. Glad I did too because it was bad.
I may head up your way this winter just to say HI. Hang in there Tony. If the number of friends you have is a factor in beating cancer then you have a helluva head start.
Jeff
Thank you, Jeff. Interesting, isn’t it, how Honda must see the Africa Twin’s competition as the R1200GS. They’ve bumped the displacement to 1100, this at a time when other marques are bumping down, Guzzi, KTM, the smaller Tenere that Yamaha’s been hyping forever. I sat on a KTM790 recently (display bike only, not available for a demo). I love how they moved the weight of the fuel so low but it’s an awfully small bike, I’m not sure I’d want to slab it for any great distance. Might as well do up the DR, as you say, and save about nine grand.
Macoun apples. Jealous! Also appreciative of your real thoughtful and reasoned approach to all this. I’m sure you’ll map it out just right for yourself! Sending lots of positive whatnot from Chicago, where string lights are requisite on every porch, or else you’re just not cool.
Macoun for pies, Honey Crisp for apple crisp, mmm…
Hello Tony,
I read the last post last week and it took awhile to sink in. I am not very good at expressing myself, so I just kept quiet then. After reading this post, I thought to let you know that all of us, your friends, who follow you and your adventures, are with you on this journey too!
All the very best for your fight against this adversary, and we all know that you’re going to kick its backside.
RideSafe and best regards
Prasad
Thanks for the good word, Prasad. I appreciate having you out there as a reader and a friend.
You already know what I think (not that it matters really according to Jen in most situations)…but like Duane and my Sasquatch riding buddy basically said…f—k cancer.
Don’t lace up the gloves…this is a bare knuckles bout and you know cancer, however dormant it is now, will play dirty at some point so you need to as well. Jen has several patients who went through the same thing and came out on top as a result of getting out in front and taking action. Start that six months now so you’ll be ride ready for the MABDR by the time prime riding weather hits. We’ll even let you ride the GS and whatever bike Greg has and will eventually crash at some point😬
That big GS gets heavy ’bout the tenth time you need to push it back up on its wheels in a mud hole, I’ll bet 🙂
Tony, you always have something to talk about and see the good side of things. It looks like you understand your situation. As said here already it is clearly a case of making choices and I know you will make the correct choices for you and your family.
Stay in the wind as much as you can. Hopefully I will ride east next Spring and catch up with you then in person and meet your family.
Sounds good, my friend. Check out the MABDR, the Mid Atlantic Backcountry Discovery Route, 1,000 miles between Tennessee and Pennsylvania, about 70 percent of it off pavement, the rest through small towns with lots of colonial and Civil War history. And they’re opening up another 1,000 miles to the north next spring, from Pennsylvania up into the Maritimes. This winter I plan to get the DR set up for that ride.
Definitely do whatever it takes. I love your writings, even though I don’t comment much.
Also, your wonderful family wants to have you with them to continue to make them laugh. Best to all of you. (Maine friend from years ago when our daughters were little).
I remember you & yours well, Sheila. A Halloween party at your house in Veazie, maybe… 35 years ago?
I think I was a terrorist, a look I can pull off with not much costuming at all.
What Duane said. Both times. Pulling for you.
Sure hope I’m gonna need a new pocketknife… 🙂
Cancer’s all around us these days, and we’re better equipped to confront it than ever. Get the best advice you can (it’s all around us too) and take it seriously. You’ll be surprised at how well things can turn out!
All the best from Maine.
Hmm… I’m either reading between the lines or reading into the space between the lines, Dave. Either way, I’m hearing left & right from people I’ve known forever and never even suspected they had some personal experience in this area. Unlike big-mouth me, they didn’t blab it all over the place via WordPress 🙂
Tony, it’s all been said but I’ll repeat it anyway. We want and need you around, so don’t sit idly by. Time can be your friend, but passivity sure isn’t. Also a big +1 to Duane’s excellent advice. Find the person who looks at the specific version you’ve got all day, every day. I look at health outcomes data for a living and experience translates to years of survival. (Goes for surgery, too.) Kick and scream for coverage if you have to; I recall Duane doing that quite successfully but it wasn’t a cakewalk. We will be watching and thinking about large and ungainly motorcycles for you.
Haha… thanks, Tammer. Large & ungainly, & stupid heavy, but when you crank on the throttle they make more noise, so that’s good…
Tony,
You will kick cancer in the ass. Get second or even third opinion on the best way to go.
You are in Dan’s and my prayers, even going the novena route for you. You are an adventurer, so maybe you can even get in a trial for a new drug. You do have choices. Take the best one for you. Don’t give up.
Judy
Hi, Judy. Funny you should mention a drug trial, that’s one of the two chemo options the oncologist recommended yesterday. One course is Bendamustine and Rituximab. The former’s a drug, the latter’s a monoclonal antibody. Second course is those two meds plus a third, an investigational thing called Vincristine Sulfate Liposome.
If I do chemo, I like the idea of helping the docs learn something that might help someone else down the road.
Thanks again, and hi to Dan & family.
Tony,
Lost both parents to Cancer. Dad was 89 when he passed, so a long life was all his.
One thing he hated most was when a nurse would ask him to describe his pain level.
Pain is personal. Mom was 64 when complications from ovarian (stage 4 at diagnosis) got her. Thanks to talcum powder. Diagnosed at 59, she fought it hard. She’d say ‘attitude is everything’. She lived those 5 years to her fullest – saw 8 new grands born and kept my dad laughing through most all of it. Can’t imagine wrestling the Piglet in pain. I’m sure Piggy, like my RK, pretty much drives itself through curves so to hear you had thought of sitting the ride out speaks mountains to where you are.
You, Sir, have the attitude that it takes to put cancer in a choke-hold. Get to it.
Matt
Adel, IA
Five years, that’s quite a journey. Thanks for writing this, Matt.
Our parents went at about the same ages. Pop was 88, mom 67.
You have a great knack for living and writing. So when I say it’s always better to write a killer lede than a killer ending, that goes for life too. Much prefer you do that. Good luck! Shout out if you need any recommendations. (Salit not Salette)
Haha! Killer lede v. killer ending. Well said.
Back in for another comment because I re-read this and got stuck at this:
“Several options from here”:
Ahh…no. There is really only one thing to do. Get in the trenches and go to war. You’re being attacked and it requires you fight back with every weapon at your disposal. If you are getting your ass smacked around and something is trying to kill you do you think about options? No, you fight for your life right now, as hard as you can and as best you can. Cancer isn’t thinking about what it’s going to do to you – it’s doing it NOW. You don’t have options, you have a battle on your hands. FIGHT.
We’re all in your corner. Kill the Beast.
Tony, I agree! Having been thru cancer once myself, you do what you have to to keep on going. 23 years later, I’m still here to talk about and annoy the people around me ✌
Twenty-three years, that’s really something, Kathy. I wasn’t aware that you’d had your own experience with the Emperor of All Maladies.
Thanks so much for writing. Hi to Jeff.
Hi Tony,
Oh, what everybody said. For sure.
Hope to see y’all.
Alix
You bet. Let me know when you plan to be in Boston, Alix.
Duane, as usual, gave you some good advice. Don’t be like my buddy Jeff did last year and fuck around looking for the best doc in the country. He fucked around and he is gone. Like Huey P. Meaux once said, “When you need a doctor or lawyer hire the VERY BEST one you can find. It’s no time to lowball.
Kick this stuff real hard to let it know you know. Then, love your family and stay in the wind.
Jeff Bailey, good guy…
Get that motorcycle built! We’ll toast Jeff’s life on the Bonneville Salt Flats next summer.
Don’t lay down and die. Take the chemo. According to my medically informed wife, the sicker you get (longer you wait) the more difficult the tolerance. I would think the odds of a successful outcome would be reduced as well. Say what you will about oncologists, they’ve seen a lot more cases than you or I. Their advice is usually good.
Indeed so, Jim. I have confidence in my doctors. They bring the expertise, all I’ve got to add is personal preference and a wild-ass-guess judgment call. And the view from the inside-out, obviously.
Giving it serious thought, to be sure.
I would like to point out that it is hard to be morose in my concern when you say things like Peckerville. It starts as a sophomoric chuckle and then shifts to recollections of your writing (New Adventure: Peckerville!)
We’re here for you, boss.
Sophomoric R Us…
Tony, I was the “objet d’art” in your God’s Waiting Room article a couple of years back. Left hand is less fubarred than it was, and, I can still work a clutch, so FLA’s I-10/Death Wobble “0” & Motorcycling Sasquatch “1”.
I’ve following your posts ever since. Really enjoy your prose & musings. Sorry you had to meet George up north…he’s Dutch.
Felt the need to drop you a note & say “cancer sucks swampy ass”. My father died from it, my Mum has it & my sister had it. Runs in the family looks like.
The best approach to it, in my view, is to squeeze life dry every day, as much as you can. Kick it in the ball sack so it sits up and takes notice, and don’t “go quietly in to that good night”. By the content & tone of your posts, it looks like you already knew that.
Hope to ride with you soon.
Haha! Motorcycling Sasquatch…
Greg, you were a good sport to allow Scott to tell your story on the Nickels.
I heard about your MABDR ride… Scott’s talking about another run at that in 2020, maybe I’ll see you there. I should get your take on the pros & cons of the Africa Twin at some point. I seriously considered buying one in recent months. Now I’m leaning toward dumping three to four grand into the DR650 to get it properly set up for off road. Will need to figure that out over the winter.
Thanks for reading, Greg, & ride safe out there.
I hope you fight back. We don’t want to lose you. Best wishes.
Michael
Thank you, Mike. Here’s another reason why we live in the orbit of one of the great medium-sized cities in America.
It has to be tougher dealing with cancer out in Nowhere, Nebraska. But I imagine people do, somehow.
Had Stage 4 cancer, was told I was terminal, get ready to die sucker, nothing we can do for you. Can’t say I cared for hearing that across the desk from my local oncologist and got busy researching who was the best oncologist / surgeon in the country for what I had. Turns out there as a professor/doc at Johns Hopkins that was at the forefront for my kind of cancer. Went there and he said “I think we have a chance if you’re game for the procedure”. What choice you got? So I got sliced n’ diced, chopped up and things removed. Kind of a brutal surgery and I would prefer to not ever go through it again, but you gotta do what you gotta do. That was in 2006, and I’m still here in 2019. Thirteen more years of Adventure Riding, watching the kids grow up, that sort of thing. WORTH IT.
My favorite part is this. Johns Hopkins published a paper three years ago on my kind of cancer and in it they stated that “There is no documented case of anyone not having a recurrence of this cancer, it always returns after any procedure”. My old surgeon sent that paper to me (he’s now with MD Anderson) and said he called up his old place and told them their research paper was wrong. He had a patient (me) that has never had a recurrence and fully recovered from it. So yes, there is a documented case of it – I was the case. Boys let me tell you, that’s like holding the winning lottery ticket.
My cancer advice is simply this:
1) There is ALWAYS someone that has survived every cancer. It can be you.
2) Never lose hope.
3) Get educated on your disease. YOU have to be your own advocate.
4) There are lots of good doctors out there and a few that are world class that operate at a different level. You want that world class guy.
5) You get one chance to do this right. Make good choices.
This will be a hard road. But you’ve been down hard roads before, Tony.
Ha! Score one for Dr. Choti.
Your story knocks me out, D. As the saying goes, one foot in the grave, the other on a banana peel. And you beat it! What a journey. Hats off to you.
I appreciate the pressure you must be under now, to avoid dying absurdly; so people don’t say, jeez, after a miracle at Johns Hopkins he buys the farm falling down the stairs with a clothes washer, or, you know, someone throws a Big Mac out a car window and there goes the big RG tumbling down the interstate end over end.
Keep yer head on a swivel. You’re practically required to live to be 100.
I hear cannabis is really good for this type of thing… and relaxing… very relaxing…
Harley guys riding the interstate at 40mph… sorry, ma, stoned again…