Tommy Rivs and the Road to Rage On
When someone has impacted a community as much as runner Tommy Rivers Puzey (aka “Rivs”), people rally to help a friend and role model. That has been the case over the past few weeks as close friends and many who have never met Rivs showed up with an outpouring of support after he landed in the ICU.
According to his wife, Steph, and brother, Jacob, after a multi-week battle to find a diagnosis, the Mayo Clinic came to the conclusion that he has Primary Pulmonary NK T-Cell Lymphoma.
Over the past many months, the community has come together to raise more than $755,000 on this GoFundMe Fundraiser. He has a battle and long road coming and you can support Rivs and his family here. Rage on Rivs. 👊🏾
- Tommy’s wife, Steph’s Instagram
- Tommy’s brother, Jacob’s Instagram
- Tommy Rivers Puzey Is Improving, But Still Battling Cancer — see this article in Trail Runner for the full interview
- The NPR podcast
Get involved and get the hat:
- Craft has Run with Rivs shirts, and Trucker Hat. The full hat and gear collection
- The Global (Europe) Run with Rivs Collection
- The Run with Rivs challenge ran August 1-9. Run, ride, hike, walk, etc. for as many miles as you wish to raise money for the family of TRP. Take on the challenge of your choosing. Details here and on the RunWithRivs Instagram.
The Latest from Tommy’s Wife, Steph
As told through her Instagram posts on January 25th
I’ve been cryptic in this space over the past few months. I’ve written about grief more than I’ve given updates on Rivs’ condition. This has been deliberate. There is a delicate balance between keeping people informed and becoming a public emotional spectacle, and I’ve tried very hard not to cross the line.
Believe it or not, Rivs is fiercely private when it comes to his personal life. If you’ve had the chance to meet him in real life, you’d know that he’s a somewhat shy introvert. I’ve never wanted to overstep by becoming his public voice, even while he was sedated. That is why most of my writing has been an expression of personal reflection and experience rather than prognosis and progression.
That being said, we know so many of you have poured your hearts into our family, and for that we are forever grateful. We’ve transformed from virtual acquaintances into a global family. We have received tens of thousands of donations, gifts, cards, letters, prayers and messages from around the world, and have read every one. It’s been a struggle to know how to respond individually, but please know that I would not have survived the past 6 months without the inundation of love and support. It buoyed me on the darkest days. It helped me see hope in the midst of despair. Thank you, thank you, thank you.
Cancer is a cruel and cunning beast. It is hard to give concrete updates for such a fickle disease, especially one as rare and unpredictable as Rivs’, but I feel confident in saying that the first round of Rivs’ battle-the one in which he was acutely fighting for his life-is over. This is largely attributed to the medical team that took a chance on Rivs when he was given effectively zero chance of survival. They worked tirelessly to save him, risking their reputations to give him even a hope of making it through. To my knowledge, there has never before been a newly-diagnosed stage IV cancer patient put on ECMO. We will never be able to adequately thank our team of doctors and nurses who accepted Rivs into their care, especially amid a global respiratory pandemic.
Throughout his 5 months of hospitalization, Rivs endured multiple surgeries, most of them while sedated- ventilatory intubation, open lung biopsy, ECMO placement in both his jugular and femoral vein, a tracheostomy, a Peg GI feeding tube, a pericardial window, two chest tubes for collapsed lungs and internal bleeds, and multiple bronchoscopies. He suffered from acute liver failure, a deep vein thrombosis in his arm, a stage three sacral pressure ulcer and two different strains of fungal lung infections as well as a septic blood infection. He suffered from severe ICU and steroid-induced delirium, and on many days he was unable to recognize me or even remember his name.
He lost 70 pounds of muscle, withering from his 170 pound race weight to 98 pounds. He had to relearn how to talk, swallow, and chew. He strained but succeeded to speak on a passy-muir valve while still on ECMO and a ventilator. He then had to learn how to move his limbs, beginning with his finger and toes. This alone took weeks of arduous work. In fact, he was the second patient in the hospital’s history to stand upright while connected to both life support devices.
On September 21st, after three rounds of chemo and a 50% lung tumor reduction, Rivs was weaned off ECMO without a clear idea if he’d ever be able to come off the ventilator. He was soon after given his first dose of Pegaspargase (a very potent chemo drug that they were unable to administer while on ECMO). He was taken off the ventilator less than a week later.
He spent the subsequent 3 weeks in a Bone Marrow Transplant Unit for a 4th round of chemo, still on supplemental oxygen delivered through his tracheostomy. He was unable to sit upright, unable to to shift himself in bed on his own, even unable to hold a phone or a pen. He was exclusively fed through his feeding tube and suffered from cancer cachexia/severe malnutrition despite the medical team’s best efforts.
After his 4th round of chemotherapy (which followed the SMILE protocol-one of the most highly toxic chemo regimens despite its sunny name), Rivs had his trachea tube removed and was able to function on supplemental nasal oxygen. He was soon transferred to a rehab hospital with the hope of getting him standing and walking. (Walking, along with adequate lung function, is a basic prerequisite for bone marrow transplant. The procedure itself is so strenuous that without these basic physical requisites, the transplant itself could be lethal. Unfortunately, transplant following chemo is the only medically proven modality to reduce the risk of relapse for his particular cancer.)
On day 5 of rehab, Rivs took his first steps-from his bed to the doorway-assisted by a physical therapist, an occupational therapist, a nurse and a walker, much to his displeasure. A few days later, on November 14th, he was able to come home to us for the first time in over 4 months for a short interlude between rehab and his next round of chemo.
He underwent his 5th and 6th rounds of chemo alone in the BMT unit and was barely well enough to come home afterwards.
Over the past 3 weeks, he’s been slowly emerging from the debilitating and cumulative effects of chemo. He is now free of supplemental oxygen and is able to walk short distances without his walker.
His recent pulmonary function test showed 20% lung function, which disqualifies him from being a transplant candidate. As such, his recent PET scan showing no evidence of cancer is bittersweet. It means that the past 6 months of treatment have effectively killed all the cancer in his body, which is cause for celebration. Unfortunately, this is marred by the reality that the aggressive chemo regimen, as well as months of sedation, have caused significant malnutrition and weakness. Even worse, ventilator and cancer-related scarring has caused severe lung damage.
For the foreseeable future, he is unable to continue with treatment. The good news is that he is in remission, thanks to his astounding body and spirit, along with an incredible medical team. The bad news is that his oncologists suggest that without transplant, he has a 90% chance of relapse.
And so begins round 2 of his fight. The goal is to rebuild strength and gain weight in anticipation for yet another course of chemo, should he relapse as medically suggested. The hope is that if or when he relapses, he will have had enough time to rebuild his strength and lung capacity to endure another 4-6 rounds of chemo, followed by a bone marrow transplant.
It has been difficult, to say the least. But Rivs is….Rivs. He is eponymous. There really is no one like him. I could write in metaphor and parable for centuries and never successfully express his grit. His heart. His resolve. Every doctor has told me “if it were anyone else, he’d be dead.” A trite and sobering statement, but I’ve witnessed its truthfulness firsthand.
So we brace for the worst but hope for the best. I’ve seen him defy the odds, become the confluence, arch on the pendulum, stand in the fires of liminality, and grow towards the light. I’ve watched his body wage war with the space in between. I’ve seen it poked and prodded and medicated beyond human capacity.
I saw his spirit and it was fierce.
It saw his body and it was savage.
They both want to live.
And so he will.
So he will.
Tommy’s First Update Post-Diagnosis
“Cancer is hard. I’ve been away for so many weeks. Not gone. Always still here but in the space between. There are not words to describe the out pouring of love and support I have felt from around the world. You have all been there with me. I felt your prayers and energy. I continue to feel them. Throughout all of this there has been one constant. Even on the farthest limits as I drifted through that other realm, @steph_outside has been by my side at every moment. Even when I didn’t know if I would make it back she was there. “Come with me.” I whispered and she turned my eyes and reminded me of our life, and those 3 little girls who are waiting for their daddy to come back. She is my rock and my home. I am forever tethered to her through this course. My body is broken and wilted. I’ve lost 70 lbs. I have pressure ulcers on my sacrum and heels. I ask the nurses to cover the wounds so that they won’t be soiled when they change my diapers. I am all tuckered out. It was all just here but it just drifted away like ash or like a song. My chest is bound from the constriction and I feel as though I’m drowning when I sit up. “I can’t breathe.” I find myself whispering. Everything comes at such a cost. My currency has grown common and my efforts yield seemingly nothing. But I know I have to keep moving. Even in this there is process and so I place my trust and strain. I’ve felt the colors drift from my eyes time and time again as my oxygen levels have cascaded and consciousness slips, into that other space. The space between. I have slowly allowed myself to look back, with courage that I may be able to place hope in my efforts. I have found myself weeping again and again with gratitude for all that you have done for me and my family. Every day I hear something new that has taken place in my stead and it floors me. Humans are not inherently focused on self. I have found through this that people are good and given the opportunity they will move mountains to communicate love. A thousand times thank you to all of you. My heart is full. I’ll keep moving forward. I am sustained by your love and kindness. Even in this there is beauty. Eyes up. Stout heart. 🖤”
Tommy Rivs’ Family
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I open my computer to write and there you are, haunting this blank screen. The cursor pulses. It taunts me. What is there to write of other than you? What will there ever be? The hyperbolic pause that blinks as I wait. An exaggerated breath that I understand in all its cruel irony. The pendulum swings and the fear of your absence consumes me. Hope and defeat. Here and there. Now and later. Will we grow old together? Will you see the trees you planted in April sprout their leaves next Spring? Will we see the Redwoods like we said we would? If tragedy is a well then uncertainty is a bucket at the end of a tattered rope. The comfort of the well lies in knowing your fate. In the bucket you can reach out, hang on to tenacious strings that speak of maybe, that tell of faith and miracles. But hope hurts and faith is vulnerable, leaving you in the tidal chance of making it out. And in that hope lies anxiety-an unrelenting drive floundering in your throat. An inexorable uncertainty. An unending maybe. It clots and claws. It is dark down here, in the maybe. I reach for the rope but it burns my hand as I lose my grip. It’s easier to float in the well of finality. To cough out the hope that burrows. “Ignore the bucket. Ignore the rope. There is no way out. You’ve done this before and it didn’t end well.” So is this it-the apex of maelstrom? You thought you’d reached it in your teens. You thought that was the depth of it. You thought you’d reached the pinnacle of despair. “Oh girl”, he whispers. “The darkness is so much wider.” And who are you, anyways? Who is it that haunts me now- father or lover, demon or deity? The lines have been blurred my whole life. Blessings and trials. Lessons and burdens. Promises of eternity that end in early departure. You left when I was young. Will you leave me again? Impermanence becomes permanent. The bucket, the rope. The water, the well. The pendulum swings.
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It wouldn’t be Rivs unless it was rare and aggressive. My man has been diagnosed with NK T-Cell Lymphoma. It was suspected all along, but because of its rarity and even rarer presentation in Rivs’ lungs, other avenues were explored before the Mayo Clinic made its final diagnosis yesterday. The prognosis for this type of cancer is poor, but we have found, with seeming serendipity, a group of doctors who not only love Rivs but truly understand his mental and physical fortitude. They will start him on high dose chemo today, knowing a lifetime of grit has trained his body and mind to fight this battle. When hope seems distant, they believe. And so will I.
Tommy’s brother, Jacob Puzey
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After five rounds of chemo it is time to rebuild & prepare for the bone marrow transplant. This will take time. He’s been through things he has never been through before. He’s regaining strength. He has an excellent team & thousands rallying behind him. I’ll do my best to keep you informed about ways to support him & his family. Please continue to send positive thoughts & prayers his way. The #teamrivs & #runwithrivs shirts & hats @craftsportswear are a great way to rally behind him. The Go Fund Me campaign is still open. All can be reached through the link in my bio. Thank you for your love & support!
A Community of Support
Pro Runner Jim Walmsley
“Man, this guy has been in all of my thoughts. Hurting for a friend, mentor, and brother. Rivs has a big fight ahead of him still, as he is currently going through treatments of chemotherapy. I know if anyone can come out of this, it’s Rivs. He has to, we need him to. Rivs is someone who has had a tremendous impact on so many of us in Flagstaff and the running community, always spreading love and inspiration. Tomorrow, July 27th, @pizzicletta in Flagstaff will be running a fundraiser where proceeds will go towards helping River’s medical costs and supporting his family following treatment. Help by purchasing a Pizza at Pizzicletta tomorrow, buying a gift card online, or checking out his GoFundMe page, link in my bio. His GoFundMe page has a lot more details about his specific cancer, how his treatment is going so far, and other important details to stay up to date. If you’ve already helped, thank you. Tommy and his family need us #teamrivs Love you Rivs!”
Olympian Runner Magda Boulet
“I’m so inspired by our running community, who are coming together to support @tommy_rivs and his precious family in times of need. After several weeks in ICU with pneumonia/COVID related symptoms, our dear friend @tommy_rivs continues to fight for his life. Collectively we can do so much to help him and his family. Many of you have already donated, but please don’t stop here, continue to spread the message that others can help too. Check the GoFundMe page in my bio for updates from his family, share the page with others so they can support Tommy and his precious family. Together we can make a difference. Tommy has given so much of his soul to all of us, now is our turn. Follow @jacobpuzey, his brother, for more updates. You got this Tommy! ❤️🙏❤️”
Peter Bromka (@bromka) as quoted from his Twitter thread; @bromka’s @bromka/rage-on-3effeff441a8">Medium post
A new story about Tommy.
Many of us “traditional runners” wonder about @tommy_rivs popularity, because he’s not a traditional “Elite runner.” Most of Letsrun has no idea who he is.
So at a family dinner I mention my friend Tommy Rivs and my brother-in-law replies “Tommy Rivs!”
And he’s wide eyed excited, wants to talk about the man. But I’m confused cause he’s not a big runner. Ran a few road races here and there.
Why does he know of Tommy?
“He’s who I run with on @iFit!!”
“He’s who taught him everyone he knows.” My sister-in-law replies.
And they begin to tell stories about how interesting Tommy makes running. And how accessible Tommy makes running.
And how even the fact that he doesn’t look like he’s dressed for a “fashion show” made running accessible to them.
And they’re stunned and heartbroken to hear (because they’re not on social media) that the man who helps them love running is struggling.
It’s in moments like this that it’s easier to see how “traditional running” is so small and limited compared to the wide world of people who move with their bodies.
“Bipedal animals” as my BIL tells me Tommy reminds them often. “It’s what we’re meant to do.”
Just a fresh story about the impact of a wonderful man on the world.
Hang on Tommy, we love you. ❤️
2x Olympian Runner Kara Goucher
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If you’ve ever met @tommy_rivs you know what a kind, inspiring, incredible soul he is. Right now he needs our support. Please send him prayers tonight and if you feel inclined, donate to his growing medical bills at the link in my bio. His brother @jacobpuzey is updating as often as he can. Prayers please ❤️🙏🏼❤️ #teamrivs🏴☠️
UK Runner Owen Hughes
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For those of you that don’t know, all round top bloke and gentle soul @tommy_rivs is in a tough spot at the moment. It’s a strange one as I’ve never met him, but I’ve spent many an hour enjoying his musings on everything from politics to music, to the importance of ice cream in marathon training. So if one extra person contributes the price of a cup of coffee towards his recovery, I’ll take it. I often hear people moan that social media friendships are shallow and meaningless. My own experience couldn’t be further from that, but here’s a great chance to prove what a force for good it can be. Head to @jacobpuzey for the gofundme link. Peace and a happy week ahead to you all. #teamrivs🏴☠️