LOTS OF water under the dam, not to mention over the bridge. That’s because round 4 of 6 did me in. It was as if rounds 1 through 3 had teamed up & joined forces for an all-out pile on.
For a while I was pretty much sleeping around the clock. When I finally got out of the house two weeks later it was to spend a few hours in Mike Connelly’s shop pulling the piglet’s fork tubes apart and giving them a scrub in the solvent sink.
It exhausted me for the next three days. I wondered if cancer might get the idea I was tired of fighting back.
When the Emperor of All Maladies comes for you, it expects you to at least put on a show of resistance.
The pain behind my right collarbone finally quit.
Last July the sore wing made for a long ride home from British Columbia. The pain was exquisite and was my daily companion for the next six months. It doesn’t bother me at all now and hasn’t for five or six weeks. Chemo really did the job in that area. It greatly reduced the mass of inflamed lymph tissue.
I favored my left arm for so long my right trapezius is visibly wasted. In the spring I’ll find something to do outdoors to rebuild my upper body strength on that side.
The bride, ace genealogy detective and all-around puzzle solver, was accepted last week into the Society of Mayflower Descendants. Her ancestor was Edward Fuller, who had a brother on the ship as well, Samuel, the only doctor on the journey.
Edward died the first winter ashore, as did his wife. Her name is uncertain in the record, it may have been Ann. Their 12-year-old son, Samuel, named after his uncle, lived to adulthood, settled in Barnstable, Massachusetts, had a family, and that’s how all our gals come to be Mayflower descended through the Fuller line as well: D1, D2, D3, D1D1, D1D2…
From 1620 until now, the generations in the Americas keep rolling on. Here’s the bride with D1 and D2 on an Easter trip to Philadelphia 35 years ago. D3 was yet in the future.
I might as well embarrass her by saying she was likely conceived that weekend in April. She was born the following January.
Round 4 came with a new symptom: a bad metallic taste that, like the nausea, is always there. Brushing doesn’t help. Fortunately, gum does.
I always bring enough for the other patients.
Nobody ever said it was fun getting chemically cooked from the inside out. I’m turning into 175 pounds of ceviche.
I sweat all the time even though I’m not running a fever. In the last three weeks I’ve noticed a definite hearing loss in my right ear, another known side effect, likely permanent. Chemo can kill off your auditory nerves while killing cancer cells.
There’s always something new with cancer but I find it’s somehow never surprising in its newness. I mean, Rutger Hauer could punch through the wall, pull your hand through to the other side, start breaking your fingers and you’d think, eh, well, I guess I should have known something like this was a part of it.
The bride found these ginger thingies for me, for the bad metal taste and the nausea. They help.
Farmed by naked Australians… I guess they know what they’re doing.
My oncologist says the rough time I had on round 4 means it’s time to cut the dose. When round 5 starts tomorrow, I’ll get 70 mg/m2 of Bendamustine (the m2 is meters squared as a unit representing body surface area). In rounds 1 through 4 the dose was 90 mg/m2.
Bendamustine, that’s the chemo drug derived from the same stuff that went into WWI mustard gas shells.
Seventy shells incoming? Lordy! But at least it ain’t 90. Yes, please do sign me up for 22 percent less nitrogen mustard in my life.
All in all, and despite all, these continue to be the best days of life. I’m still kicking in the morning. I arise, I write, I read, I cogito, ergo sum. The house is full of love.
The bride and I enjoy our ordinary hours together, morning and evening. We watch Jeopardy, yak about this & that. She coos at me like Edie Hart up on the roof with Peter Gunn. Except the repartee is down to earth. Literally so. Like when she says, babe, do you think you could pick up the mud you track in with your boots instead of sweeping it under the woodstove?
We fall asleep to me spooning her, wake up to her spooning me. Our pre-dawn wake up is the sound of little D1D2 chirping from one floor above. A cheery, early riser that one. She’s starting to talk, starting to walk. Yes, without a doubt, the best time of life. Cancer can’t dull the shine let alone make a dent.
Here’s the latest from my pedal-mad friend, Pierre, the young mechanical engineer from France who chucked it all and took off on his bicycle one day. His 9,000-mile odyssey from the Arctic Ocean to Central America is over for now. He met a young woman on the road.
Three weeks ago he left his bicycle in Costa Rica. The last I knew he and the GF were traveling in Columbia somewhere.
He won’t mind me lifting a telling line from our private correspondence: “I feel I’m done with so many kilometers and hours alone on my bike. I’ve found some answers.”
Remember the octogenarian woodcutter I found out in the woods with a broken leg a few winters ago? I saw him three weeks ago harvesting a locust tree felled by high winds. This is on state land nearby. With the leaves down this time of year I could watch him work from the house.
He comes tooting along with his chainsaw, his wheelbarrow. He quarters his rounds with a mighty overhead swing of his maul. He loads up the quarters and walks the wheelbarrow to his house a few blocks away. Slow but sure, the win to the tortoise.
His saw is painfully dull. Every time I heard him working I wanted to grab a file, go over there and sharpen his saw for him. Or bring him one of mine. I was never quite in shape to leave the house.
You’ve heard the hype about cannabis, what a panacea it is for cancer patients. I haven’t found it to be that. At least not around here, and not in my particular circumstances of Around Hereness. I was done with weed in 1973 after the first & only time I heard myself telling the bride a lie over it. Thought to myself: this can’t be good if it leads you to lie to people you care about.
Of course, if you have friends for whom weed is a part of daily life, no need to be a fussbucket about it. When in Rome…
I know for a fact it was helpful to the late Johnny Danger, who fought for his life for 17 years against a real killer, a super assassin, a deadly sarcoma, not the mickey mouse lymphoma I’ve got.
Ol’ Danger would have been my trusted resource on cannabis. With him gone, I turned to another good friend these 35 years, so as to have the benefit of a local guide who knows the lay of the land. He helped me get answers, even if none happened to work for me.
I thought the weed might help with nausea. It really doesn’t. Or it doesn’t much. Not any more than prochlorperazine, or ondansetron.
The doc gave me a new one to try starting tomorrow: metoclopramide. Maybe that’ll be the one.
Johnny Danger’s grow on the Eastern Sierra must have been genetically akin to the mild-mannered heirloom strains of the 60s and 70s. It was delightful. When we were at Burning Man on one of my iron piggy treks to the west, all I remember is around-the-clock good times, deep relaxation, laughter, all’s right with the world and what on Earth might we see next?
Eight mind-blowing days and nights in the Black Rock Desert. Glad I saw it when I did, about a dozen years ago. Since then, I gather, Burning Man has jumped the shark and then some.
The weed nowadays, or what trades on the black market here in Little Rhody, is insanely potent, packed with THC, your ticket on the last train to Blottoville. I don’t like anything about it.
Maybe it’s a godsend to the dying, to people with worse cancers, worse chemo. For me, noooo… I need to work, want to work. Can’t work glued to a chair watching the day’s shadows move across the floor.
I like my brain without way too much of this particular molecule in it.
Once upon a time, a dental hygienist finished with me, said the doc will be in to see you in a few minutes, would you like a magazine? I said Nah, I’m good, I have an interesting inner life. She burst out laughing. I wasn’t trying to be funny; of course I can sit for three minutes without a distraction aid. Glad to sit for three months if it’s on a motorcycle. I won’t need or want music, as so many riders do. My signal-to-noise ratio’s pretty high, I’m happy watching the river roll by in my own headspace. For these reasons, and others, I can’t be sitting around stupid high through this cancer thing.
One side of me says follow through, take the next step, get the official state-issued card, go to one of the so-called “compassion centers” even if their websites do read like a religion, see what, if anything, they have for high CBD, low THC, for edibles, all that.
Not knowing anything about anything, I have to say, just on the face of it, this “compassion” mantra pings my bullshit radar. I mean, it’s not as if the state and the owners have set themselves up to lose millions ministering to cancer patients. To the contrary.
The state has licensed only three dispensaries. The supply, thus tightly controlled, keeps prices sky high (so to speak). Add in fees, taxes, surcharges… jeez, if it ain’t Big Pharma with a hand in your pocket it’s Hip Pharma.
In any event, I get a letter last week from the state Department of Health saying I’m a full lodge member, I can pick up my card in Providence any time.
I seriously doubt that I will. Because by the time I learn how to navigate the weed-is-medicine subculture I won’t have cancer anymore. Or won’t have it bad enough that it needs to be treated.
That’s the plan.
Tony DePaul, February 18, 2020, Cranston, Rhode Island, USA
You are a better man than I. I would be curled up in a ball of self-pity, trying to stay alive. I feel so guilty when I’m thankful this has not happened to me, yet I’m fearful it will happen one day as it seems to reach everyone sooner or later. At least reading of your fight gives me a dose of gumption to get off my ass and appreciate every. single. minute. of my life – I have much to be thankful for. I SO hope you come through this and we’ll be reading more tales of your travels soon. I’ll wager that if anyone can make it through, it would be you.
OMG Tony, who would think I’d be looking forward to somebody talking about their cancer? My favorite line: Hip Pharma.
More news from the cancer ward, all good. As a twenty year plus hearing aid user (benign tumors destroyed the bones used to hear). I heartily recommend that you see a good hospital based audiologist. We need you out on the road listening…
Back in the chair now, a few hours to go, then home and Zzzzz…
I.V.’s doing its thing, drip, drip, drip…
It’s fun reading your comments.
A nurse here who reads my blog tells me I bobbled the bendamustine numbers. I just emailed my oncologist for the accurate blab. Will correct the text when I hear back.
Love your attitude Tony. And yes, your inner life is rich, and no-one, not even Sir Cancer can take that away from you. And the love you’re surrounded with at home is also unparalleled. And you’ve got an army of friends in all of us! Sending you prayers all the way from Africa.
I tried CBD for what aches and did not necessarily find relief. Or not much. Tried 5mg of edibles and found that they send me off to sleep, which was useful when being a bit sleepless, so there is that. I think their are different sensitivities across the human condition, and probably different strains among the cannabi clan that might align with the hip pharma goals for some. Out here, there is a glut of the stuff, so prices are reported to be low. When driving through Colorado, I am pretty sure I saw a sign for $17 an ounce pot along the highway. It might have been leftover from 1973… Anyway, with number 5 coursing through your veins, you are rounding 2nd base on your way to 3rd with a home run unfolding. It good you are surrounded by all that love, or I’d have to fly myself out there, and return a favor in the karma bucket. Stay tough, amigo.
Sorry to hear of the tough go and glad to hear you sound more like yourself. Believing for a positive outcome as you check off the dates!
Keep that great approach to life. Looking forward to catching up when Chemo is over.
Thanks so much for writing in, all. I’m in the chemo chair now, getting the preliminary meds via I.V., the steroids, anti-nausea, blah blah. The real stuff’s up next, the bendamustine, the rituximab.
Back here tomorrow for more, then 28 days to recover before round 6 of 6 starts.
In the home stretch…
There’ll continue to be a daily word (blab) about you to our Lord, regardless.
Dig your heels in. And yes, stick to the plan.
Matt
Adel, IA
Dear Tony, We’re all sorry to read the pain in your body still has a hold. May you find some relief that works. Meanwhile, your family and friends’ love is stronger and will get you through – even a minute at a time. Love from Maine.
I am glad to hear from you, Tony, and I just know that you will get through this. I am especially happy to hear that these are your best days.
Tony,good morning from the west.
I’ve been thinking about you lately as I have another friend that is going through his struggle as well.
Your attitude is top notch as always and your descriptive writing a pleasure to read.
There is about 3 feet of snow on the ground here so I’ve been in the shop keeping the fire going while working on my projects thinking about the riding we did last summer and the riding season coming up when I ride east to visit you………Bob
And I thought my cancer was bad. They sliced me open took out most my liver and couple of feet of intestines, gall bladder for good measure and half a dozen lymph nodes. Stitched me up and I thought for about 6 days after they just should have killed me instead. Pure misery and suffering on a level I lack the words to explain. But after six weeks I didn’t hurt too bad. After three months I bought a new motorcycle and never had an issue since.
Yours just keeps going and going and going, Tony. The Energizer Bunny of Cancer. You don’t get a break. Ugh/Oy! And that sucks. Then – and this is the part that really throws me for a loop – JUST as you are starting to feel better, they pump that stuff into you again and the cycle repeats, just worse than before. And you let them.
RESPECT.
Hi Tony. Sorry to hear battle is going crazy during this but i know your going to win the war! Just keep doing your best going forward. You got this and you will be out riding in no time. Wishing everything gets smoother and start feeling better. You are in my prayers buddy.🙏🙏🙏
Love reading your writing! It’s always been so good, even when it was about Warwick; now it’s even better. Your perspective on stuff is always enlightening and useful, too. Say hi to Pam and the rest of your crew for me! Miss you guys.
Hey Tone, what Brenda said, “you make me laugh, you make me cry…”, Rutger Hauer would be proud of you. I admire your resolve and understand your feeling about the use of cannabis, and the whole industry built around a product previously villainized. Whatever you choose to do, you have my support. I hope I never have to find out if I have your kind of strength. Hang in there.
Regards,
Will
Well scribbled. Your determination will prevail. Best to you and the family.
Hi Tony, a fellow sufferer of Emperor of All Maladies..
I saw this in a blog or forum some time ago – and it hit me rather hard since it’s so true to our feelings. I thought it deserved a bit more exposure. I take no credit for it – just for sharing it.
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Imagine
Imagine you’re going about your day, minding your own business, when someone sneaks up behind you…
You feel something press up against the back of your head, as someone whispers in your ear.
“Sssshhhhh…. don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to keep it there. I’m going to follow you around like this every day, for the rest of your life.”
“I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t you ever forget… one day I may just pull the trigger… or maybe I won’t. Isn’t this going to be a fun game?”
This is what it is like to be diagnosed with cancer. Any STAGE of cancer. Any KIND of cancer. Remission does not change the constant fear. It never truly goes away. It’s always in the back of your mind.
Please, if you have a loved one who has ever been diagnosed with cancer, remember this. They may never talk about it or they may talk about it often. Listen to them.
They aren’t asking you to make it better. They want you to sit with them in their fear… their sadness… their anger… just for the moment. That’s it.
Don’t try to talk them out of how they are feeling. That doesn’t help. It will only make them feel like what they are going through is being minimized. Don’t remind them of all the good things they still have in their life. They know. They are grateful.
But some days they are more aware of that gun pressing into the back of their head and they need to talk about it. Offer them an ear.
❤Sherry McAllister❤
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About here I’m sniffling heavily.
Tony, I wish you a durable remission…. and many rides. Maybe this summer I can ride up to Rhode Island – the only state of the New England states that I haven’t wandered into on 2 wheels.
The sharp wit is evident tonight, and my favorite is “cancer can’t dull the shine, let alone make a dent”. That picture is clear. Those words are concise. The generation gap is no gap. It’s a healer.
Thanks for the word on the bicyclist. You pick up strong people. People who are choosing to do and be in memorable ways. I’m also glad to read about the woodcutting neighbor. Glad he’s still out and about.
Thank you for sharing your journey with cancer. What you describe is hard, yet how you describe it is precise, concise, and I get the picture.
I’ll be praying for your stamina and ability to build back your lost muscle strength.
Tony, great to hear from you. One thing I love about your writing and storytelling is the pictures you paint on the inside of my imagination. I’m looking to reading many more as the road goes on. Love ya’ brother.
HI , you make me laugh: you make me cry; that’s the sign of a good storywriter.
thinking of you wish you well. fondly Brenda c
Tony,
Sorry to hear round 4 took so much out of you. I guess each round works on a progressively weaker body. Hope the next two rounds are easier and you’re up and riding by spring.
Two posts ago you paraphrased a line into, whatever doesn’t kill you, almost kills you. In younger years I used to say, whatever doesn’t kill me, should run. And then I met some hard times and learned that diseases works on a whole different level.
Rebuilding trapezius strength – actually almost anything we do, from farmers walk, to chin-ups, deadlifts (translated for us older folk into carrying groceries into the house, getting up off the ground, and picking up anything heavier than a wrench) works the traps. But of course, if you want to sound in the know, drop the name Gittleson Shoulder Shrug.
Yeah, pot helps some people and does little or nothing for others. Same with CBD. And you’re right – it’s the next big money maker.
Get well,
Dennis
Hey Tony, Glad to see you haven’t lost your dry sense of humor. I hope the next round will treat you with a little more respect. Thinking of you often, get better so you can come up here for a ten o’clocker.
Hey Tony! Good to see a missive from you. Hang it there! We’re all thinking of you and hoping you can soon put all this behind you and get out on the road again. There’s room here at the inn for you.