Maybe now I could sleep.

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The reason I was up: pembrolizumab, a drug you probably know by its brand name, Keytruda. It’s a class of drugs oncologists have been employing since the early 2000s with phenomenal success in treating several cancers. It’s a drug that acts differently from chemotherapy or radiation, which just wantonly destroys cells, both cancerous and healthy. Pembrolizumab recruits your immune system to help stop cancer cold.

But here’s the tradeoff: immunotherapy drugs don’t always know when to stop. The first generation of these drugs miraculously kept very ill patients alive, but sometimes their immune systems would also attack the GI system as well as liver function, occasionally killing the patient. As the drugs and therapies have improved, the worst side effects have become more controlled. However, it’s still a wild ride to see if these drugs are effective and what crazy side effects will be launched inside your body.

Welcome to the chemistry experiment where you are the subject!

My night of itching came nearly nine months after I started with pembrolizumab. After I was diagnosed with HPV-OPC, a head and neck cancer, I had a couple choices. Either treat it with the standard of care, 35 sessions of radiotherapy combined every week with a low dose infusion of cisplatin, a platinum based chemotherapy drug, or we could try something new. By combining pembrolizumab with a couple of chemotherapy drugs, I potentially could shrink my bulky 4cm tumor that was taking up all the real estate in my left tonsil, maybe to the point where I would become eligible for surgery to remove it and the move onto more moderate radiation treatments. This was a good to have benefit that ended up not working for some reason. The main benefit, however, is in decreasing the recurrence rate of the cancer. In a clinical trial, doctors saw recurrence of the disease cut almost by a third after the patient had a full year on pembrolizumab. My oncologist got approval for a year’s worth of pembrolizumab. Game on!

All Gas, No Brakes

Pembrolizumab belongs to a class of drugs called checkpoint inhibitors. Your immune system is an expert at finding and destroying abnormal cells, including cancer cells. But because the immune system is so powerful, the body uses checkpoints, basically brakes, so that the immune system doesn’t attack healthy cells. Unfortunately cancer cells are experts at mimicking healthy ones, leading to the system turning off. Checkpoint inhibitors turn off these brakes in the specialized T cells that hunt and kill abnormal cells.

In the 1990s Dr. James P. Allison of University of California at Berkeley and Dr. Tasuku Honjo of Kyoto University in Japan found two different proteins that potentially could be modified by drugs to help turn on the immune system to attack cancer cells. Dr. Allison’s lab first turned off the brake in the protein CTLA-4. D.r Honjo found a way to turn off the brake in the pathway of the protein PD-1. Drs. Allison and Honjo were awarded the Nobel Prize in Physiology or Medicine in 2018 for their discovery.

It launched the era of the checkpoint inhibitor. In the early 2000s several drugs first targeted CTLA-4. The results were impressive when it worked in patients, which researchers found occurring in one out of eight patients. Cancer tumors shrank significantly. However the toxicities of these treatments were equally challenging. Researchers found that it was difficult to control the immune response once the brakes were turned off. A sizable number of patients in clinical trials died from colitis. Researchers had much more success by targeting PD-1 proteins.

A New Approach

In 2011 a clinical trial of pembrolizumab saw significant shrinkage in tumors of patients with advanced melanoma. In 2014 the FDA approved the drug for treatment of melanoma. What had been a terminal diagnosis became a treatable condition for some patients.

In 2017 the FDA approved pembrolizumab for any cancer that had similar characteristics. Pembrolizumab became the first drug to become a multi-cancer treatment. Since then it has been approved for treatment of over 43 different cancers, including bladder, non-small cell lung and head and neck cancers. Since then, the drug has become the best selling drug in the world in terms of revenue. Merck sold $35 billion of Keytruda last year. With list prices of $65,000 per infusion, no wonder!

Through better treatments and more targeted therapies, like pembrolizumab, immunotherapy drugs side effects become less deadly. Yet there are limitations. It’s still unclear if the drugs are going to be effective or not in treating tumors. When they do work, the tumors will sometime become resistant to the drugs. And once the drug is stopped, tumors are known to come back. The next generation of immunotherapy drugs are getting more specific in how they attack cancers. Several clinical trials are attempting to focus on specific antibodies in proteins that may help disarm the cells without leading to side effects.

Combo Platter

Researchers are now dividing the PD-1 drugs into two different applications. One uses bispecific drugs to target prongs of the PD-1, which they believe will lead to more effectiveness and less si

de effects. By pairing the bispecific with an Antibody-Drug Conjugates (ADC), it may lead to much more targeted and well tolerated treatments. One of the most anticipated clinical trials that combines the two treatments is being run by Summit Therapeutics. “We’re looking to replace the PD-1 component of the equation,” says Summit’s strategy chief Dave Gancarz. “ADCs are looking to replace the chemotherapy component.” The combination could lead to a massive step forward in how we treat cancer in the future.

My hospital offered me an education class so I knew what was happening to my body before I began treatments. The RN who ran the tutorial told me about the variety of well-known side effects that would come from chemotherapy and radiation. When she turned to pemobrolizumab she suggested that most patients aren’t affected by the treatments. At first. “Patients tolerate it fine. Until they don’t,” she prophetically said.

Your Mileage Will Vary

Weird rash patches started becoming visible on my skin in February. They continued to get worse slowly over time. After an early June infusion, it escalated to the point that the steroid cream and antibiotics the doctors prescribed seemed to do nothing. Meanwhile, my white blood cell counts slowly declined after improving post radiation treatment, another suspected side effect to the immunotherapy treatment. It seems my body was telling me I had enough.

During an appointment to go over a scan with my surgical ear nose and throat oncologist, he suggested that pembrolizumab might be doing more harm than good. “Most of the time, you do recover, but you don’t want to be in that small percent that crossed the bridge of no return, and now you have a skin condition that’s lifelong. So yeah, I would quit it if were you.” He called my medical oncologist and they agreed. No more pembrolizumab.

While I still have monitoring and scopes with my oncologists, it marked the end—truly the end—of my treatments. I walked out to the parking lot and sat on the curb, taking in the sunshine of a beautiful summer day. Almost a year ago to the day I sat on a park bench outside of the Milwaukee clinic where the ENT doctor told me it was cancer.

All in all, I got lucky with my diagnosis and everything that went my way. It was the best version of shitty news I could get. Pembrolizumab was definitely part of the positive results for me, regardless of the side effects. Already the drug is having a huge impact on cancer patients. And we might be on the cusp of immunotherapy drugs and treatments rewriting the cancer treatment books.

The Fine Print

Just to be clear with the readers of Milestones: I’m not a medical expert, researcher nor a physician. The best that can be said about me is that I’m a patient that is paying attention with a slight obsession of doing research combined with the tendencies you get from a former journalist. Most of my pieces here are 1) personal recollections of going through treatments and talking to medical experts combined with 2) a desire to do the research and 3) an obsession to explain (simplify? dumb down?) complicated medical technology in a consumable way. How successful am I at that? Open question.

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Now that I’ve gone through the treatments and have gotten to a perhaps tenuous remission status, I wanted to write a bit about what I’ve learned from going through the cancer experience.

It’s a lot!

More than I cared to ever know about the disease and its impact on people. In particularly, my family and me. And I’m discovering new stuff every day. From symptoms to bills to the psychological impact the disease had on me.

But there’s more than that. I was blissfully unaware of many elements of getting and dealing with the disease that have become painfully obvious after going through it. Here’s a sample of a few things.

Cancer Culture

Of course cancer is everywhere in our society. We all know someone who’s gone through treatments even remotely and the odds are that it will hit a lot closer in your lifetime. Along with its daily presence in our lives is also an entire ecosystem of commercialism that accompanies the disease. There’s no way you can go a day without seeing something about cancer, from heartwarming images of people getting amazing care, to ads for cancer drugs that we’re supposed to tell to doctors about, to soft cuddly PR pieces from companies that are helping cure cancer. Let me tell you that all of it lands a lot differently when you’re on the other side of the diagnosis. And it’s not all good.

Look, I get it. Everyone is trying to help and the disease is impacting everyone. But some of the ads sure feel a bit more crass opportunism rather than helpful when you’re in the middle of it. And not to pick on one single thing but hey, some things are worse than others. Number one on my list is Mastercard’s involvement with the non-profit Stand Up To Cancer.

During baseball’s biggest broadcast events, the game stops and everyone in the stadium holds up a provided placard that you can write the name of someone you’re standing with in their struggle against cancer. The cameras slowly go around the stadium showing the placards with some dreamy, inspirational public domain music playing in the background. Mastercard also tells us about the massive donation to cancer research that they proudly tack on at the end of the moment that the entire baseball world stops to honor. Last summer, weeks before my diagnosis when I knew I was probably fucked up and headed to Cancerland, I remember watching this during the All Star game and wondering if that was going to be my life now.

But by the time I saw the same display during the World Series in the thick of radiation treatment, the whole display made me pretty irate. There’s a baseball term that is pretty applicable to why I find Mastercard’s involvement with SU2C maddening. It’s Eyewash. Eyewash is when players do activities that look like good effort, but in reality it’s just for show. You’re not really working hard, you’re just checking the box. And that’s what I thought about when the cameras scanned the crowd. Most were disinterested, or worse, wrote something idiotic down on the placard like ‘Survivors’ or ‘Loved Ones’. Why even bother? And don’t even get me started about Mastercard’s involvement in the moment. Total Eyewash.

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It almost feels like companies are deciding to support things like SU2C because it helps them build goodwill through its marketing impact. Call me a pinko commie, but my disease probably shouldn’t be your marketing opportunity.

Interest Gained

If Mastercard really wanted to help cancer patients, I have another idea. How about providing no or low interest to the estimated 34% of patients that had to put treatments on a credit card? That’s just the tip of the iceberg when it comes to medical costs. According to the American Cancer Society Action Network, approximately half of all patients incur some sort of medical debt and 42% of patients reported that they spent their entire life savings within two years of diagnosis. The average amount a patient lost was $92,046. And that’s just for people who already are insured. If you don’t have insurance? Expect significantly worse outcomes.

Making a marketing campaign about cancer? Great optics. Forgiving interest for 24 months for anyone with a cancer diagnosis? Priceless.

Battling Cancer

Which takes me to my next piece of cancer culture that can just fuck off. That is this incessant need to make cancer this battle that every brave patient puts up against the disease. I cannot speak for every cancer patient, but this one is telling you that this language is absurd. I didn’t battle anything! You get a diagnosis, a treatment plan, then you do something to your body and wait for it to react. That’s it. No internal struggle that you’re steeling yourself against.

My take: the battle metaphor says a lot more about people grasping at something to say to patients than it does to those to us struggling with the disease. I know it feels extremely uncomfortable to figure out what to say to someone who got shit news about their health. But the answer isn’t filling it with the battle metaphor that seems designed to make it feel like something patients have agency over. We don’t need to make the patient seem like they’re on this noble mission against the disease.

The reality is that most of the cancer experience is passive, not active. You get diagnosed. You receive treatments. You get scans and see how everything works. Your life in the hands of doctors, researchers, administrators and insurance companies that yes, you have say in, but you need to let things work relatively hands-off. Society’s need to pervert language to make it an active fight launders what the real experience feels like and only widens the gulf between what is happening to us and what the world thinks.

The people who I’ve most appreciated when talking to me about my diagnosis are the ones who lead with their own vulnerabilities. “I don’t know what to say,” always felt more honest and human when talking to someone. I always appreciated that over the whole ‘you’re a fighter, you’ll beat it’ motif. I also find that people who have already gone through this and their caregivers never used ‘battle cancer.’ That’s pretty telling.

It’s Not About Deserve

Speaking of other completely annoying and heartless acts that people truck with when it comes to cancer are the insulting questions about personal behavior that people ask while discussing diagnosis. In some respects it makes sense. Cancer is scary as fuck. When you hear about someone who gets diagnosed, there’s a voice in the back of your head that tries to make sense of it.

When people ask questions about smoking, drinking, eating and other lifestyle choices people make that led to the disease, I think the motivation is to ease your own anxiety about getting cancer yourself. Like you are able to put yourself on the other side of the ledger that will offer you protection you from ever getting it because of your lifestyle choices.

But if you look at it from the cancer patients’ perspective, that line of questioning makes it seem like you’re blaming someone for their diagnosis. This might be unpopular, but nobody deserves cancer. Period. And we need to do everything we can to help them get over these terrible diseases. Trying to figure out lifestyle choices that led to the diagnosis is unhelpful and downright rude.

Invisible Caregivers

And then there’s caregivers, who have one of the hardest jobs in the world: taking care of someone going through all this shit. And can only imagine how helpless it must feel to watch someone you love go through painful treatments and also handle everything in the house that you’re not capable of doing. But meanwhile the world doesn’t even think anything of the caregiver. It’s all about the patients, which I get.

But for one minute can we just pay attention to the caregiver who serves as nurse, a coach, a medication expert, a scheduler, and the emotional pillar support that get us through the treatments and back to health. This is an amazingly incomplete list of what caregivers do, all while putting their own feelings, fears and an overwhelming sense of helplessness, aside.

Caregivers need a lot of support. A couple times people in my close circle asked specifically if there is anything I needed. I mentioned that Jaimee needed more support than she was getting. The silence was deafening.

My sense is that people don’t think about caregivers at all. They also aren’t going to advocate for help because when you compare what they’re going through to the patient, they feel like it seems trivial. Guess what: it’s fucking not! No way I get through my journey, and most people get through their issues, without a strong advocate like I had with Jaimee.

We ask a lot of caregivers and give them almost nothing in return. That needs to change.

Gratefully Not Dead

As much as I just want to leave this out there as is, I do have to wrap up by saying how grateful I am for everything I have received through my experience. I received amazing care from my providers. I have a great family and circle of friends who supported me throughout my care. I got tremendous feedback from so many people who read Milestones and encouraged me to keep sharing. And I have learned so much about myself and the world through the process. I didn’t want this disease, but I have to admit that it has started to, and will continue to, teach me something about life.

One spot remained. It’s been the focus of every appointment I’ve had since finishing my cancer treatment in late December. In the four month post treatment PET scan, the spot had ‘lit up’ just as my surgical oncologist, Dr. P, predicted it would. During the follow-up after the scan Dr. P snaked a camera up my nose and proclaimed ‘it looks like a wound, but we can’t be sure.’

The doctors recommended a CT scan, which showed a 7mm spot of ‘subtle asymmetric enhancement’ that required more investigation. Dr. P took a look at the images while I was on the phone with him going over the results. “Eh, it’s hard to say. It looks like a wound, to be honest,” he said based on the look of the tissue on the scan. “But let’s get a biopsy of it anyways.”

Okay! Better to know right away! The biopsy would be an outpatient office visit just like my first one last July when we discovered the cancer, right? Unfortunately, no. The spot was tiny now compared to the hulky-bulky 4-centimeter beast that filled up my tonsil. I could actually touch my tumor with my fingers. The new spot would be hard to get to. “We need to have you fully asleep.” So full anesthesia. In other words, surgery. Oh boy.

The biopsy was scheduled for next Friday, Dr. P’s surgery day. I knew if the test came back negative for cancer, I’m in remission and I get to move onto the next stage of recovery.

But what if it doesn’t get cleared? “Well, then it gets kind of tricky.” After a long explanation, the main takeaway is you don’t want to do surgery on recently radiated tissue. The spot heals so extraordinarily slow surgeons help it by constructing a flap of tissue from another part of your body. And the area will most likely have much higher levels of bacteria from the radiation, so the possibility of infection goes through the roof. “Expect to be in the hospital for at least five days, maybe longer.” I had a vision of my hospital room, with me climbing the walls trying to get the hell out of there, all while trailing a couple of IV bags behind me. None of this sounded attractive.

After I processed the news, I was calm. The two were such divergent outcomes, but I really believed I had to keep both scenarios alive in my head. As if either outcome could be real. In one life, I go down the road of remission. The other was surgery, recovery, pain, setbacks, and healing, eventually, maybe. Or not.

Friday came quickly. The operation was incredibly short. Jaimee and I walked out of the hospital well before 10 am. I wouldn’t find out results at least for 3-5 business days. When I had my biopsy in July it was two full business days, so if it were the same time frame, we’d get results Tuesday.

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Saturday I was fine. Whatever outcome I would live, I told my friends and family. Sunday, less fine, though when Jaimee asked I said I was okay. Monday less fine than Sunday. Jaimee checked in. I said everything was good, even though she could tell it was most definitely not.

I had done the research and dug into the science. I saw that other cancer research facilities, like Memorial Sloan Kettering (MSK) in NYC, were running clinical trials with novel ways of using much less radiation for some patients with my diagnosis, depending on what kind of cells your cancer generated. If your cancer grows incredibly quickly, it can create cells that are starved of oxygen. These cells are very challenging to treat as the radiation requires oxygen to do its job. But for those who don’t have that condition, you most likely need less, and maybe much less, radiation. MSK was treating Oral HPV cancer patients with 60 percent less radiation than what I received. This matters because the radiation (let’s just call it what it is: poison) effects start to get significantly worse the more you receive. Some studies show that the last 5-10 doses of radiation a patient receives is when the terrible side effects start to take root. Like swallowing issues, eating difficulty, saliva gland loss and so many more ugly lifetime impacts. MSK’s internal testing also suggested up to 90 percent of patients had cancer cells that might benefit from less radiation.

With all this, it seemed logical that I probably received more radiation than I needed than less. And that spot in my mouth? That was a radiation wound, which is what all the providers kept mentioning. But try telling that to my brain as it was busy figuring out how to extract myself from the ceiling after being cooped in up a hospital post-surgery to snip out that last bits of cancer. And you don’t really know. Sure, the data looks good, it doesn’t really mean anything. We don’t live in data. We live in how our bodies react to the treatment.

Tuesday was the worst. I had reverted into Cockroach Mode: that oh so endearing (not) method where I put my head down and try to get through difficulties regardless of how I feel. Jaimee noticed and asked directly what was happening. I opened the door a tiny crack a let a little of the pain out. She asked me to open the door wide open and let it out, and I found it hard to do. I did apologize later. When I finally admitted to Jaimee that I was kind of freaking out.

Sure, I was living in both worlds, but I really didn’t want to live in the last mile cancer surgery world. There was the medical stuff to navigate. But even more importantly, what would it mean that the cancer didn’t respond to the huge load of posion my body had swallowed? Does that change the odds of recurrence? Or maybe it never goes away, and I just go into a pain loop with recovery-recurrence-recovery-recurrence cycle. Surgery on radiated flesh is bad. Radiated previously radiated flesh is no fun either.

Everything would be up in the air and there weren’t solid sources of five-year survival statistics based on the other path situation. When it came down to it, I really couldn’t embody this new cancer-odds-world, not fully. There was too much I just didn’t know and honestly didn’t have the emotional capacity to face.

Tuesday afternoon I got a notification on my phone. A new test result was uploaded. I opened up my chart and only saw the words ‘benign squamous mucosa.’ Benign! Then I read the whole thing. No cancer. Just a wound! Tears welled. I felt a warmth creep up my nose. I breathed heavy and put my head in my hands. It had worked! That other world just vanished! I was in remission.

Later when I talked to Dr. P he said there wasn’t much we could do about the wound. It would just need to heal. And of course, it would take time because of the radiation. Since I still had a spot, we would have to keep monitoring it with scans and exams. I had another appointment and CT scan scheduled in two months. It would continue until the wound healed.

And of course there’s the possibility for a recurrence. The data suggests while you can get a recurrence at any time, most of the recurrences happen within two years of the original treatment. If I can just make it two years…. Nevertheless, I’ll have to regularly monitor my health and my mouth. And manage the lifelong effects of the radiation on my body, like jaw mobility and swallowing issues and mouth pain.

But remission. I’ll take it. So we’re all good. Right?

Patience. It’s something that is in very limited supply ever since my diagnosis.

At first I wanted to get the fucking tumor out of my body as quickly as possible. ‘You’re a month out from starting treatment,’ my friend and HPV cancer survivor A warned me the day I received my diagnosis. There were tests, consultations with cancer and treatment experts, a tumor board and aligning appointments that needed to be done. The cancer took as long as 30 years to form and materialize in my tonsil. Days don’t really matter. Weeks? Maybe. And I definitely didn’t want to wait months. But patience. Take a breath.

Yesterday, four months after the final radiation session, Jaimee and I met with my medical team to review the first PET scan post-treatment. Six weeks previously Dr. P, my surgical oncologist, prepared me that my scan might ‘light up’ even after delaying it a month. Six weeks ago Dr. P performed a scope and thought that the pain in the site of my hopefully former tumor was caused by the 20 focused radiation sessions that were pointed directly at site and not cancer remnants. His theory was the wound would attract the radioactive glucose that was injected into my veins, which would look just like a tumor.

In that six weeks what had been fairly consistent discomfort during meals had faded considerably. I slowly weaned myself off pain meds and felt better and better. I even had to rely less and less on my magic mouthwash that numbed my mouth before meals. Sure, I could still feel it and I didn’t dare try super spicy foods yet, but I had made dramatic strides. Finally.

One of the doctors in the meeting displayed the two views of the PET scan. What had looked like a golf ball in bright yellow in my mouth and shrunk to the size of a pea. That seems great! And the sense Jaimee and I got from the meeting was that the doctors thought that little pea was just slow healing. However the doctors do what they do. Dr. P performed another scope. Lubing up a flexible cord with a high definition camera attached to the end, Dr. P gently inserted it up my nose. “Pressure, pressure, pressure,” he narrated as the scope entered my throat.

I can’t tell you how weird it is to have something shoved up your nose and eight people in the room cranking their necks to get a better view of the screen behind me. I couldn’t see what they saw, but I intently scanned their faces looking for signs. Wait, was that concern? No. Curiosity? Why is Dr. K leaning in? Am I being too patient? Is this a problem?

Dr. P took the scope out and handed me a tissue. My eyes slightly watered from the discomfort that always accompanies a scope. “There’s no mass there.,” Dr P said, “There’s no kind of growth that’s coming out. It’s hard for me to say. There’s this fibrinous stuff, but it looks more like a wound.”

The radiation oncologist Dr K chimed in “maybe a CT scan?”

“Yes, a CT scan. Let’s do that.” The PET scan is designed to tell us if there’s a cancerous spread anywhere. The CT scan takes an in depth view of the tissue. It measures the size of any growth and gives doctors an understanding what the area looks like. Wounds look like you’d expect: ulcery, soft and tender. Growths have a different appearance to them: firm with rolled or thickened edges. Dr. P didn’t think it looked like growth visually. The CT scan will provide him more info about it. “Of course if we really want to know, we could biopsy the area,” Dr. P said. But performing a biopsy right now would also slow the healing. So that’s tabled, at least until Dr. P reviewed the CT results.

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The results: wait and see. No evidence that anything is wrong. But not in remission. Patience. But also: limbo.

We left the office and had lunch outside on a perfect mid-70 degree spring day. I ate a burger for the first time in months. Or at least half of it. I felt good. Progress. But should there be some doubt in my mind about where I’m at?

At the end of the day we retired to bed. I quickly fell asleep and woke with a start. Wait? What happened today? For a second I fell into the trap of going down the rabbit hole to more cancer, more treatments, more pain. Then relaxed. It’s fine. Trust the process. You most likely got way too much radiation in the spot rather than too little, which is why four months in I still have a wound.

But what about the rest of my life? When does that start?

In many respects, this started far before the diagnosis. My last startup died nearly the minute we landed in the Midwest in 2023. I couldn’t figure out what was next and friends wanted me to come work with them. It was far from a perfect fit and my instincts told me what they wanted isn’t what I do for a living. But I was trying to help out and needed some place to recover from the end of the startup. The business faced challenges and we parted ways in September of 2024. Afterwards I worked with another friend on a product that showed promise. We did great work, but the company wasn’t ready for what we made. Meanwhile, I applied for jobs. But limbo with that too.

I was just starting to get a consulting business going when I got diagnosed. As the treatments kicked off I kept working, but felt reticent about truly diving in. I was totally on the shelf in January and February as I recovered from radiation. Since then I’ve been dipping my toes back in. Maybe I’m still holding back. Based on my experience with product development I should be in the prime of my career, but I’m 20 years older than my peers as I started product as a second career. In tech, age matters quite a bit. Pile on AI deployment and there are questions if the product role matters anymore at all, regardless of age, experience or the company. If that’s the case, what do I do? Another career? Maybe.

And then there’s the Midwest. We moved back to try it for family reasons. It’s been highly rewarding, but also a bit of limbo as well. It’s become demonstratively clear that Jaimee and I both have a strong affinity for the West. We love being close to family, but there are days when I long for the possibilities of the future that seems to be much easier on the West Coast as well as being so insanely close to the wild mountains in the PNW.

The career? The Midwest? The cancer? They all seem to be conspiring to the state of limbo. And just like the slow healing wound, I probably won’t exit this feeling overnight. It will slowly start to fade over the period of a couple years, with surveillance, scans, healing, freaking out and relaxing.

During the medical team meeting, I mentioned that I was getting some jaw tightness that feels worse when I don’t stay on top of the PT exercises I was given. Dr. K mentioned that because of the radiation the way I feel right now is probably the best it will be. Fibrosis starts to set in. Discomfort and lack of mobility will only increase.

“It is important to make those exercises a life long thing,” Dr. K suggested. He was referring to the fibrosis. Is it also true for the limbo?

This time I noticed that time-freeze just as I set dishes down in the sink. On my 10-foot walk from the table to the sink I had noticed my vision tunnelling. After turning from the sink there was a moment when everything seemed still, then dark. The next thing I remember is Jaimee shaking me awake. “You fell on your face.” Not once, but twice. The second time I took a header against the kitchen floor, cutting my lip and chin. She had carried me from face down to a lying position with a pillow tucked under my head. A pillow that I was bleeding on.

The ambulance ride and waiting the entire night in the emergency room with Jaimee and Sienna was the culmination of nearly a month of trying to get my pain meds right, and for the most part, failing to do so. Ever since my radiation treatment completed, I went on this tour of opioids: oxycontin, hydrocodone, dilaudid. My body decided it hated them all. Oxycontin was the worst. It made me so dopey. I was falling asleep nearly all day. Finally, my body rejected it. I developed a full body rash. I hated the way it felt, the way it smelled as my body sweated it out. I remember thinking that nothing could be worse than dealing with the side effects of this drug.

The next day, that was proven incorrect, as I faced the pain with only over-the-counter medication. I thought my pain wasn’t too bad. But it had ramped. Considerably.

The Pain Test

I can’t say I was looking forward to this day. When the pain set in. But I also wasn’t dreading it. Mostly, I was curious to see what my reaction would be to it. How would I handle it? Many of my friends told me that I was tough and it wouldn’t be a problem. I wasn’t sure about that, though, because my default reaction to suffering is to burrow inward. So it might seem like I’m impervious to tough situations, but inside I’m roiling.

A lot of my tough reputation goes back to my ability to withstand difficult physical fitness challenges. It was most earned with my functional fitness group Koi Fitness in San Francisco. I started as a client but later transitioned to a coach, leading some grueling workouts in remarkable settings. None was tougher than our Saturday workout at Baker Beach, with its sweeping view of the Pacific Ocean and the Golden Gate Bridge. At the end of the workout, we would end up at the Sand Ladder. This beast of 200 steps went 138 feet up from the beach to the road. Clients would dread the end of class because of the Sand Ladder. I enjoyed the challenge. Nothing tested my fitness and fortitude like starting at the bottom, staring at the steepest part of the climb.

Maybe what I liked most about the Sand Ladder is that it stripped away nearly everything that you brought to the workout. There was no glamour, no finish line with a cheering section, no ego trips. You were left only with 200 steps and a view of the infinite sky. Would it ever end? After stripping everything away, we were all left searching for a meaning to the suffering. Why were we out here? For us diehards that trained all four seasons for multiple years, it went well beyond fitness or vanity or competition. We had to delve deep inside for answers.

And maybe that’s what I was interested in with this bout of suffering. Nearly every medical professional I had to deal with would tell me how difficult head and neck radiation could be. To add to this, when I would peruse through the subreddit for head and neck cancer I was blown away by the stories from people who had almost impossible suffering. Months of only gaining sustenance through a feeding tube. Awake all night with phlegm that nearly would drown you. Open wounds on necks that take months to heal. After a while, I stopped reading. I wanted to have my own experience with recovery.

Of course, the main objective is to get cured of this disease. But beyond that, I did wonder if there was something more meaningful that I could take away from surviving the entire cancer experience. I do have an attack mentality when I plainly see an obstacle in my way. It’s rare when I get to the point in the Sand Ladder when I can’t really see the finish line and give up. And while I wouldn’t say anything along my cancer journey so far had been fun, it still hadn’t put me into the suck where you can’t see a way out. Little did I know I was about to go there.

The Tour of Opioids

My own personal Sand Ladder started the day after my radiation treatment completed. Throughout its course, I hadn’t noticed a significant increase in pain. It only nearly imperceptibly ticked up. My providers had to push me to add other pain relievers to my mix. By the last day, I was taking oxycontin but didn’t feel like it was doing much. My preconceived notion was that I could handle everything being thrown my way with Tylenol, despite being on a powerful opioid.

Another way I minimized what I was going through was the idea that getting through treatments was going to be the worst part of my experience. Everyone I talked to told me that the two weeks after treatments was the pinnacle of pain, when it would increase substantially. One person described it as still cooking even after you get out of the microwave. Also, in my talks with those who had gone through similar treatments told me that it wouldn’t be until six months before I reached a ‘new normal’ (whatever that meant). But just like my diagnosis, I had the belief that I would overcome what everyone said was in my future.

And then I found out I was wrong.

At the end of the tour of opioids, my wonderful PA, M, suggested that I try tramadol, a much less potent opioid that she believed would cause less side effects than the others had inflicted on my body. The itching, which was the main problem with most of them, was greatly diminished, but still lingered.

While the overall discomfort was worse than it had been on the other pain meds, I felt more present. But the constant throbbing had its impact on me. I was tracking several different medications and ended up without neither gabapentin nor tramadol to get through MLK day weekend. Jaimee suggested robbing some leftover gabapentin that was previously prescribed to one of our dogs, which nearly bridged me to Monday as long as I took a smaller dose. Meanwhile I was rationing tramadol. Pain was ramping accordingly.

Meeting The Monster

Saturday was crazy. I decided to take the last dose of dilaudid that was clanking around in the bottle to help me sleep. To counter the itching, I popped a Benadryl. As has been my pattern recently, I fell asleep around 8pm.. I woke around midnight with a start, a bit perplexed. It felt like something was wrong but I couldn’t place it. I laid back down and the inner dialog took over. What if I can’t relax? Am I going to be up all night? Will I need to go back to the hospital? I was spiralling. Logically, I knew I wasn’t having a reaction to the medication. But couldn’t place what was wrong. There was just a feeling of not being right and seeing no way out.

I went downstairs, where Jaimee was still awake. I asked if we could just watch something dumb on TV. That seemed to tamp down my agitation. After a while we called it a night and got ready for sleep. Everything felt okay. But as Jaimee’s breath started to change, signifying she was falling asleep, I had a vision of the monster of the past few months starting to gain on me. I had kept bad vibes at bay, but now they all seemed to be rushing at me. I got overwhelmed, this time worse than the first.

I woke Jaimee and told her I might be having a panic attack. She comforted me, we talked it through, and I started to calm. She suggested listening to a meditation session, which seemed to help. Then came another moment where I couldn’t quite let go, and she held onto me. I focused on her breath as she started to fall asleep. There in her arms, I was able to release the monster. My heart slowed down and I fell into a fitful sleep.

The next day was super groggy. I felt hung over from Dilaudid. My body really didn’t like these medications. I only had OTC meds to get me through the daytime, as I was holding on to my last dose of gabapentin and tramadol for the evening so I might sleep. It was a rough day to cap a rough weekend.

That evening Jaimee intervened. She said it was unacceptable that I should be without pain meds. She asked if she could make calls to the pharmacy and doctors to figure out what was going on. I mentioned that it seemed like it should be my responsibility, but Jaimee reminded me that I had a lot going on and it was difficult to keep track of everything. I needed help, I knew, and it made me feel better that she was going to get on it.

Beginnings and Endings

After spending 15 years in the NFL wilderness, my football team, the Chicago Bears, suddenly were relevant and played an amazing playoff game. They lost but was a thrilling conclusion to an exceptionally dramatic season, one us Bear fans haven’t seen from the team in 15 years.

As I fell asleep, it got me ruminating about endings. Was I facing an even larger, more difficult end? And what was the point of the next beginning? Would it be another 15 years of waiting for something amazing? And can I even think in terms of years, considering my cancer? Time, which I stupidly considered limitless now seemed fleeting.

And what about pain? Sure the door had only been opened ajar with treatment and its side effects, but was this just the beginning of a master class of suffering and decline? Of course, I had the deluded thought that this disease and cure was an event to get through and forget, like a cold or a pulled muscle. But cancer will leave a substantial mark on my life.

The data supports that I will have a positive outcome from my cancer. But there is also the chance that the past few months were just the smallest precursor into an era of sickness and suffering that I would have to endure.

So far, I’ve been blessed by pretty great health, and I’m in good shape to thrive for the next 20 years-plus by so many health indicators. But this left turn towards cancer--has it changed everything? Would I be gifted with more beginnings and what would I do with the ones I’m given? I’m in my sixties now. It’s a decade known for the start of physical decline. And most people entering this age didn’t just go through pretty intense treatment for cancer. Will that steepen my curve down?

The next day Jaimee utilized the management skills she had honed as an executive to get my medication all sorted out. It required multiple calls, a fair amount of patience with the mechanics of medical systems, a bit of charm, and two separate runs to the pharmacy to get all the meds. Lifting the pain cloud a bit plus a good night of sleep was enough for me to see more than just neverending sky in my Sand Ladder.

I’m glad to be out of it, as it really wasn’t helping my recovery and healing. But I also don’t want to forget that feeling. My brain, despite all the crazy drugs running through it, was pointing me toward the right questions even if I have no way of knowing the answers.

Nor do I have an answer for what the suffering means. In Man’s Search for Meaning by Victor Frankl, he writes about pondering the Dostoevsky quote, “There is only one thing that I dread: not to be worthy of my sufferings.” He posits that many think the quote means that you rise to the challenge of the suffering and meet it with grace and courage. But Frankl suggested another meaning. That the suffering makes us complete. To suffer is to live.

And maybe that’s the answer. No shying away from it, nor fearing it. But rather, embrace the suffering. I get to relive a tiny portion of it over even today, as certain foods at certain points of the day would cause significant discomfort when I ate. Most times, I wash it down with a gulp of water and the pain slowly recedes. But sometimes I just sit with it. Breathe. Meet it. Let the pain be. Because when I truly accept it I am rounding out the full experience of what it is to live.

We celebrated. Both Jaimee and our grandniece whom we recently became legal guardian of, Sienna, made the trek down. Ringing the bell has become a tradition for patients completing cancer treatment since the ‘90s, when a veteran getting treatment at MD Anderson in Houston first repurposed a navy tradition of ringing a bell after completing a difficult task. Oddly, I noticed that a ‘patient’ was ringing the bell in a TV ad for my healthcare group, and yet didn’t have a bell anywhere in their main radiation facility. Odd.

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Not to be deterred, we brought a bell from home that belonged to Jaimee’s grandfather and I rang it loud throughout the hallways outside of the treatment area. My radiation oncology nurse, J, heard the ruckus and came down to hallway to give me a big hug. Finally! I had gotten to the end.

And while I didn’t have any more treatments—my problems—and the worst part of my entire journey, were just warming up.

We’re Talking About Practice?

We started the entire radiation process with a CT scan so that Dr. K could plan out the treatment. Right after the scan, I got fitted for my mask, which I would wear every day during the sessions. Made of a stiff mesh, the mask is warmed, then placed on your face. It then quickly cools and retains the form of your face.

Up next is a practice session. This allows the staff to calibrate the exact position on the radiation machine so that the right dose gets delivered correctly. Because of some scheduling issues on our side, I couldn’t make the practice and the staff said no problem, we’ll do practice and the first session the same day. Okay, then. I guess no practice?

My treatment was delivered in two sections. The first 15 sessions I received were the de-escalated version of radiation that Dr. K had discussed with us. Afterwards, the last 20 sessions delivered the full power of the radiation directly aimed at the tumor, which would destroy all the cancer cells. I started calling the two parts The Paint and The Boost.

The process was extremely rote. Wake early, fight traffic down to Milwaukee, go into the treatment room. Once inside the staff would have the Linear Accelerator (LINAC) machine set up for me to lie on the table. Get positioned correctly, a little up, just an inch lower, great, drop the mask on my face, snap, snap, and I’m bolted onto the table. Not uncomfortable, but definitely tight.

Once the staff left the room, the LINAC jumped to life, positioning its imaging system to take a low-dose x-ray of my head, which the staff called the sim. After the imaging, the machine shifts and radiation starts. The machine delivers the daily dose of radiation based on the plan Dr. K laid out and the staff has programmed into the machine. All in, I’m in the treatment room for maybe seven minutes. The actual delivery of radiation is maybe three minutes total.

Treatments are painless, but side effects build over time. The first two weeks were easy, then in the third week my taste started to fade. Chocolate was the first thing I noticed. It tasted off, nearly briny. Within a couple days my taste was completely gone. It is a little hard to exactly convey what a gut punch losing taste is in one’s desire to eat. My nurse had mentioned that some patients just give up eating once taste is gone, as if not being able to taste killed all motivation. I’m sure mouth sores don’t help either.

But my one job was to eat, no matter what, so I kept going. It wasn’t easy. It was also especially hard on Jaimee who would prepare a wonderful meal that I could smell, but not taste. Not being able to actually give feedback on the meal, really sucked.

Outside of the loss of taste and maybe a bit of discomfort, the three weeks of The Paint was easy. I almost had very little in side effects to report to the radiation oncologist RN, J, or the rare times Dr. K would make an appearance during our scheduled weekly meetings.

On The Rocks

My relationship with Dr. K had gotten off to an uncomfortable start during our first consult, and it seemed to never recover. While I could shoot the shit and ask all kinds of crazy questions with my medical oncologist, Dr. G, it was a struggle with Dr. K. While I’m sure I got phenomenal care from him, I just found the guy hard to talk to. Case and point: he had prescribed ‘The Paint’ based on the research and clinical trials that Dr. Nancy Lee from Memorial Sloan Kettering pioneered around 10 years ago. I brought him another clinical trial that Dr. Lee was leading. This one treated HPV+ head and neck cancers with significantly less radiation than I was due to receive. Instead of 70 gy, patient received 30 gy, nearly exactly what I received during The Paint and less than half of standard of care for patients.

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Nearly everyone I talked to about head and neck radiation treatment suggested it’s one of the most difficult treatments for patients to endure, as the side-effects are brutal. Dr. Lee is leading the charge in reducing the amount of radiation patients like me receive. When I showed the printout of the clinical trial to Dr. K he glanced at it briefly and said ‘Oh, this is just a study. So, stay tuned.’ Yeah, dude, I know how clinical trials work. He didn’t even take a minute to answer any questions I had about it.

Trust me, I get it. Oncologists are busy people. And I’m sure I’m their worst nightmare: someone without a medical background who does just enough research to be dangerous. I suspect Dr. K thought that I was suggesting the treatment plan for myself, which I certainly was not. I did have a specific question about cancer cells and how they are classified, but I didn’t even get a chance to ask it, as Dr. K cut short our time to go to something that I’m sure was much more important. I’m sure the dude is brilliant. But man, he left a bit to be desired in his bedside manner.

Once The Paint was completed, the team let me know there would be a delay in starting The Boost. After receiving a full CT scan, Dr. K found that the tumor had shrunk significantly. He therefore wanted to replan how radiation would be administered. More good news! The tumor had shrunk away from the midline, meaning that there wouldn’t be any bi-lateral radiation. Even better, the radiation would have much less involvement with my throat, so there is the possibility of less long-term swallowing issues that can be a problem for HNSCC radiation patients. Of course, I knew nothing of this at the time, except for the delay.

Two days after about being informed of the delay, the team called me to tell me that I could come back in for treatment. I said I didn’t want to start until Dr. K consulted me on the new plan. A couple hours later Dr. K called and suggested there must have been some confusion in the communication since I was refusing to restart treatment.

He walked me through the findings and what the new plan was, and maybe I misunderstood something Dr. K said on the call about administering less radiation. I asked him to clarify when less radiation would be recommended in my situation. He paused for a second and said ‘there isn’t a practitioner in the United States would ever recommend less radiation treatment for you. There was a nationwide de-escalation clinical trial with less radiation a few years back that did not go well.’

Okay, I guess that means the conversation is over. Granted it was over the phone and I took the call in a parking lot on a way to an appointment, so I’m sure there was a lot that was missing in the conversation. But man, I really felt stomped on by the guy. He then bemoaned the delay in my treatments and how it wasn’t lining up with the concurrent chemotherapy treatments I was receiving.

Which leads me to my next major complaint. For some reason, the radiation clinic is on a completely different computer system from the rest of my medical group. And patients don’t have access to the radiation therapy one. That means that I cannot see any notes from meetings, the clinical planning, the daily sims or CT scans in my healthcare group’s app. Oh, and by the way, all of the radiation oncologists, including Dr. K, aren’t even employees of my healthcare system, but have banded together to negotiate as third party providers, which leads me to believe is the issue with the other computer system being employed.

Outside of the fact that I spend a crapload of time in the app to look over plans and progress, none of the appointments are viewable in it either. Anytime there was a change in the schedule, my radiation tech staff would give me a new printout of the plan. I mean, c’mon, a printout! Additionally, anytime there is a change in the schedule, including this replanning pause, I would have to call up my medical oncologist’s team to tell them the news, because they just didn’t communicate changes in a timely manner. I found myself doing this multiple times in the seven weeks of treatment. Last time I checked, keeping up communication from these two groups was not my job.

The Boost

Outside of my complaints, the transition to The Boost went smoothly. After a couple weeks, I was starting to feel its impact slowly start to ramp up. When anyone on my medical team peeked into my mouth, the expression on their face went a bit blank. They described it looking burnt, especially near the left tonsil. But the pain wasn’t too bad, not yet at least. Dr. K suggested I get in front of the pain by starting to use the drug gabapentin, which is normally used to treat nerve issues, but has been shown to help with pain relief as well. It can cause drowsiness, so over the course of 10 days I ramped up the dosing of the medication and monitored how it affected me. Gabapentin seemed to help a bit with underlying discomfort, but maybe not much with direct pain.

When I reached week five of The Boost, my favorite Physician Associate M, suggested I might want to consider an opioid, as the pain in the back of my throat did seem a bit worse. Not so much that it was stopping me from eating solid food, but it felt a bit rough. I filled a prescription for oxycodone, but didn’t start taking it yet. M also asked about my use of Magic Mouthwash, which is a compound of antacid, Benadryl and lidocaine. Many patients use it right before mealtime to dull the pain and make eating possible, even with severe mouth sores. I had a bottle of it in my fridge that I filled during my first run in with mouth sores thanks to the cancer drug 5FU, but believed I should wait to use it until I absolutely needed it. She encouraged me to try it instead of just suffering. ‘Anything that keeps you eating’ was her mantra.

Meanwhile my weight was dropping. Partially due to not eating as much, but also because of the demands of radiation. My weight gaining plan had peaked right around mid-November at 159 and I was down to 149 by the time radiation treatment was completed. My dietician was still encouraged, as was almost everyone I saw on my medical team. ‘Doing remarkably well,’ was the overall reaction.

As I went through the last few weeks of treatment, I started to feel that maybe things were getting harder. I asked M at one point how much worse things were going to get and told her I was concerned about how I was going to make it through. She said that things might get tougher, but not appreciably worse than it is right now. Just her little bit of encouragement did wonders for my mood. Week five was a breeze and I only had 10 more sessions to go.

The last few were the roughest and at week six I started to take Oxy. It did seem to help with the pain, but the drug was pretty intense. My red blood cell counts were really low and fatigue was already very bad. I found myself going to bed at 9 p.m. at the latest after trying to set myself up for evening success by napping in the afternoon. Taking the Oxy made it much more difficult to stay alert. Jaimee woke me up at 7:30 for dinner more than once.

And then my body rejected it.

Up next: How I fare facing 70 gray without painkillers (spoiler alert: not great).

Part 4

Five weeks and two transfusions of immunotherapy and chemo drugs later, we wait in an exam room for our oncology surgeon, Dr. P, to let us know what comes next. The infusion of the chemo drugs, carboplatin and 5FU, had been particularly intense.

I went from one day being able to perform my workout just like I had every day to feeling like someone had knocked nearly all my energy out of me. But by the time I was ready for my next infusion, I had recovered all of my energy and didn’t really feel that much different than before. Crazy changes, for sure, but manageable, though the mouth sores made eating a bit difficult a few days after the first infusion.

A few days before meeting with Dr. P, I had lain down on a CT machine to get another image of the tonsil. My medical oncologist, Dr. G, had suggested that Keytruda would be very effective at shrinking the tumor. “I wouldn’t be surprised if your symptoms go away in two weeks.” Jaimee noticed that my snoring, which had almost become scary, had cleared up. I noticed less issues while eating as well. So maybe it’s working??

I had cheated and entered the results of the CT that popped up in MyChart into Chat GPT. Results didn’t show any change in the size of the tumor. Of course, Chat GPT had a lot of reasons why we didn’t have shrinkage, including cells that have died but are inflamed in the tonsil, a totally useless fact. Or maybe immunotherapy isn’t doing anything, more likely but less useful.

Dr. P breezed in and was pretty direct. Not enough shrinkage. No surgery. Radiation and chemotherapy was the option. Of course, this is what Dr. P suggested in early August. Did I just waste five weeks of time that I could have used to go down the healing road? Dr. P suggested that Dr. G might want to give it more time, but he was pretty definitive. No turn back the clock. Time to burn it out.

The next day, I met with Dr. G and he had similar advice: go to radiation and cisplatin. I asked if he thought that immunotherapy would shrink the tumor. “Yes, of course.” After how long? “Anywhere between 4-10 infusions.” That’s between 12 and 30 weeks.

Okay, but since it will shrink, shouldn’t we wait a couple more rounds of the immunotherapy. “Oh, no. I’d move to radiation and chemo.” Despite the fact that it *will* shrink? “Yes.”

Dr. G said that the regimen we had followed was just approved by the FDA in June of 2024 based on a recent clinical trial. And if the patient doesn’t see the results after two infusions, the recommendation is to move to the standard of care. Burn that fucker out!

We were crestfallen. But not super surprised. I had been keeping my fingers out of my mouth for the most part, but after the CT scan I reached back and had felt the tonsil. Yeah, it felt different, but it was huge still. (Side note: it’s really weird to reach into your mouth to feel your cancer.)

The next week, we met up with Dr. K who walked us through the treatment plan. Thirty five sessions given over seven weeks. The sessions would be remarkably short. Less than 10 minutes each.

Because the cancer hasn’t affected any lymph nodes, Dr. K suggested, at least for the first phase, to administer a de-escalated plan of radiation. I would receive the same amount of radiation, but it would be more diffuse, which would lead to significantly less issues with swallowing and other neck issues. Some good news! I mentioned to Dr. K about following this method devised by Dr. Nancy Lee from Memorial Sloan Kettering Cancer Center in NYC. “Oh, have we talked about this?” No dude, I did the research.

Dr. Lee has been on the leading edge of research into treating oropharyngeal cancers HPV+ with significantly less radiation while still curing the cancer. In 2016 Dr. Lee found that by treating the neck with only 30 gray more widely and then treating the tumor site with 40 gray it led to significantly less injuries, like dry mouth, taste loss, and long-term swallowing issues. So the fact that Dr. K was signing me up for this plan means he’s obviously up on the research and is willing to adapt away from the standard of care.

Then the not good news. Dr. K also mentioned that he might have to give radiation on both sides of my throat. “I’m okay with one side, but I’m not sure if I’m willing to go for both sides of my neck,” I said.

“What would you do instead?” he asked.

“Nothing.”

I had done the research on this, too. Unilateral radiation on the neck is one thing. Bilateral treatment leads to significantly more problems, like swallowing, dry mouth, neck flexibility, risk of stroke, and a bunch of other not fun issues. Dr. K mentioned that if my tumor went over the midline of my mouth, he would recommend hitting both sides. But it didn’t look like it. But maybe. Talk about confusing. “I’d just like to have a conversation about tradeoffs. Like what kind of risk are we looking at if we only radiation on a single side. And what do I gain,” I asked. We agreed to put that conversation aside for now.

Down The Pain Cave

Dr. K then walked me through what I could expect from the treatment.

Fatigue. Skin sores. Fatigue. Mouth sores. Loss of taste buds. Did I mention fatigue?

“It’s going to feel like you got hit by a truck. And it will take time for you to recover from it,” he said.

It wouldn’t happen all at once. Dr. K, like my friends who went through similar treatment said the same thing. It’s painless and no problem at first. Then taste starts to fade and disappear entirely. As treatment continues, painful mouth sores make eating harder. I might need to switch to a liquid diet when things get bad. My friend A told me he would use this lidocaine rinse and then power down a calorie-packed smoothie just to get his daily ‘food.’

Dr. K said we would meet weekly, not to check in on the progress of the tumor, but rather to see if we needed to adjust the pain medication I would be on as treatments continue. Most of Dr. K’s patients start with OTC pain meds before graduating to synthetic opium based drugs like Oxycodone. my friend P, who received treatment for it in 2019 said his doctors quickly got to the highest dose they could administer very quickly. “And they give you so many pill. Hundreds and hundreds.”

I knew I had radiation treatment, in one way or another, in my future, so I had gone off my regular training diet and had opened up to anything that would add calories. From early August to when I started radiation in late October, I had gained 10 lbs knowing I most likely was going to lose it.

I needed a buffer to stave off not only an unacceptable weight loss, but also the dreaded feeding tube that my dietican was consistently saying could be a realistic option for me.

Jaimee and I took staying off the tube as a challenge. We both love to cook, but Jaimee is truly gifted. She’s got the soul of a culinarian. She doesn’t like recipes but Jaimee has a great sense of what works just by taste and her own creativity. We are going to employ all of Jaimee’s skills in adapting as we go along. Jaimee had ideas for soups and braises and pasta dishes that will be easier to get down as things move along.

A New Path

Even so, this path has been something I’ve wanted to avoid since I first talked to my friend A, right after I got my diagnosis. I got off the phone with the ENT and dialed up A. He told me what I could expect, as I sat on the grass outside of a Jiffy Lube in Seattle during the middle of our road trip.

The more A talked, the more I thought that it wouldn’t be me. I would be able to de-escalate. Maybe I wouldn’t even need chemo or radiation. Or not the worst of it.

Fact is, by plotting my own treatment plan, I was still holding onto the old me. The one who existed before the cancer diagnosis. I didn’t really want to change. I wanted the person who I was before the tumor blossomed in my mouth. What I’ve learned, though, is that I absolutely am going to change. Not only physically and emotionally. But also maybe something even more elemental. Maybe a spiritual rebirth. Or maybe a spin down the drain.

My friend A told me something similar. He was a different person after the diagnosis, a better person. A and I did the same product manager job but he switched professions becoming a therapist, so that he could give back. My friend G who overcame lymphoma last year decided he wanted to do something more substantial with the rest of his career as well.

And things already feel different in my life. After the shock settled, a light turned on inside of me. For some reason, the cockroach survivability mode switched off.

I feel like maybe for the first time in a while I’m starting to take more pleasure in things that I thought were drudgery. Like my last baseball game where I took a mental snapshot of coming to bat in a close game and loving the experience. Or when Jaimee and I paddled up the creek that feeds our little lake and a storm rolled in. What a show! Or eating a rubbery steak at the throwback bar and restaurant in Chamberlain South Dakota during our roadtrip. Things felt a little more alive.

And while I’m just starting to traverse the switchbacks of this climb up to a cure, I’m trying, really trying, to be open to how this trek will change me. And to be open to it. Boots double laced. Pack squared away. Ready for the climb.

Read Part 1, Part 2, Part 3

On a perfect summer morning, I sat on the hot seat, in the ENT exam chair across from Jaimee and surrounded by three oncologists plus at least five or six specialists packed in the exam room, all focused on getting me to a cure for the cancerous tumor that was growing in my tonsil.

Dr. P, the surgical oncologist had laid out the two options for us: treat the cancer utilizing radiation and chemo until it obliterates the tumor or go through a couple rounds of chemo plus the immunotherapy drug Keytruda to see if we can shrink the tumor and then go for surgery to remove the tumor, and then receive de-escalated radiation round to wipe out any remaining cancer cells.

But another option was knocking around in my head.

What if I did nothing?

I felt great that day. What if I rejected poisons and experimental medicines and burning my cancer out with radiation? What would happen? Sure, I know what the answer is: I will die. The cancer would make breathing and eating harder and it would spread, finding a home somewhere else in my body wrecking even more havoc.

Yeah, I’ll die. I get it. But it’s going to happen sooner or later, right? There is a small percentage of my psyche that maybe would rather feel intact and unaltered rather than go through what my future holds. And would it be that bad to call this point in my life good?

And who knows, maybe I could go back to running on the track and train on my favorite form of torture, the repeat 400 meters, as the cancer advanced. The 400 is a form of death anyway. Maybe I would get lucky and I could finish my last 400 and just expire on the infield track. No radiation. No surgery. No Keytruda. No cisplatin. Just facing what was in front of me and accepting it.

A Different Path

You hear of patients when facing an issue that I’m staring down, decide to try a different path, like maybe herbal or eastern medicine therapies, or just use positive thinking because of spiritual or religious issues. Like Val Kilmer or Steve Jobs.

I always thought they were nuts. Why wouldn’t they just decide to treat it with the medicine we have available? But now I’m starting to build more empathy for people in those situations that choose another path.

It feels like there’s almost something sacred about the self, the whole you. I’ve reached 60 without having much seriously go wrong physically. And now I’m required to hand that sacred self over to medical professionals to do their magic.

Medicine isn’t always the right choice either. Even with the very good prognosis for my cancer, there’s a chance that it will not work and a better chance that it will fuck me up in ways I’m not going to like. I know the data: most likely, I will live and the injuries and side effects will be manageable. But I could also end up miserable from the treatments and the final result will be that I will die. Probably without the benefit of 400 repeats.

But as I sat in the room, with all these people looking at me, I bury those thoughts.

Nobody needs to hear emo-boy when like a couple of million dollars in talent is arrayed to help me get over my condition. And besides, I know me: I’m the last cockroach after the nuclear blast that you can’t kill. At least that’s the way I always thought of myself while dealing with the trauma of a fucked up childhood. My solution has always been to put my head down and survive.

That mentality is still painfully strong in my life, regardless of the costs of the strategy, which are numerous and equally injurious as the 70 gray.

Probably much worse.

Read Part 1 Part 2

Part 3

The next eight days were a blur. Lots of fantastic driving through some of our most favorite places in the world. Incredible vistas and moments. I went on a few of my favorite runs in Seattle with absolutely no pain in my glute. Our backpack up Mt. Baker was a bear. A couple thousand feet of switchbacks and before breaking out into the views of the glacial slopes of the mountaintop. We pitched our tents right below the basecamp for the people who summit. It really did feel so close to the sky. Then back to some of our favorite spots in Seattle.

As for dealing with my condition, I would have two good days and then a bad afternoon. I was wracked with questions and doubt. Is it getting worse? Am I going to be able to eat still? What happens if I can’t? Then I would talk it out with Jaimee and then settle down. Especially when I had other things to occupy my mind.

We had to cut the trip short a couple days because I had gotten the results (officially Oropharyngeal Squamous Cell Carcinoma HPV16) and then scheduled both my full body cancer scan and the meeting with the entire medical team to review my case.

Sign o’ the Times

The morning after returning home, I headed over to the hospital. I paused at a sign that directed me away from the hospital and to the Cancer Center. Is this really my life now? So bizarre.

After entering the building, it just felt like I didn’t belong, considering my age and health profile. Sure I’ve breezed into medical facilities so many times and never felt like I wasn’t supposed to be there. But for some reason, walking into a cancer center just hit differently. Fact is I am now part of a new community: those going through cancer treatment.

I got called back to imaging, changed into hospital pants and prepared for the scan. Before the techs feed you into a huge, scary and loud machine, you need to get shot up with fluorodeoxyglucose, a radioactive glucose that attaches to any cancer cells in your body and lights up in the Positron Emission Tomography (PET) scan.

My friend A talked about the techs bringing in a lead box with the radioactive glucose to protect the staff from exposure. To show how much things have changed in the eight years since A received treatment, the nurse wheeled in a robot that contains the radioactive glucose and administers it without needing a tech in the room. God knows how much these devices cost. After the nurse got me hooked up to the device, she left the room and said ‘see you in an hour.’ The radioactive material needs to spread through your body to fully show up on the scan. It was just me and the radioactive C3PO in the room.

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I couldn’t play music or podcasts but just sat and ruminated. Most patients who catch my disease early-ish (by definition most HPV+ head and neck patients already have locally advanced cancer by the time it surfaces) do so from noticing bumps on their necks or from a dental procedure. I considered my dentist again. Was there no sign of the tumor during the cavity procedure, and yet ballooned to 4 centimeters in just a few weeks? During a later appointment, I asked and Dr. S said that he didn’t see anything and it really requires looking deep in the mouth to see signs of it.

But I did get a sign: something in the back of my throat that wouldn’t go away. Could I have spared myself something ugly by just calling my doctor a couple weeks earlier? Maybe. I was going to have to wrestle with thoughts like this for weeks on end.

That Stupid Virus

My cancer is caused by the HPV virus. It’s a sexually transmitted disease that doesn’t have many symptoms at all when you contract it (a minority of people develop genital warts), and there’s no HPV test for men. Most people clear the virus from the body over a couple of years after exposure. But for a small minority, it can develop into cervical cancer for women, and head and neck cancer for mostly men (75% of the cases are males). I’ll let you Google if you really want to know how it’s transmitted and why men are so much more susceptible to getting the head and neck variant.

Cervical cancer is much more serious of an issue. However screening is extremely effective at catching it early and if caught in its early stages it’s a routine office procedure to get rid of the cancer cells. Still even with regular pap smears to monitor it, 4000 women die from cervical cancer in the US every year.

The head and neck HPV+ variant is highly treatable. The five year survival rate is around 90 percent. Catch it early enough and the treatment is pretty straightforward and simple. However, it is head and neck cancer and the treatment can (and most likely will) cause some level of injury and gobs of misery for people going through it.

Of course you want to catch it as early as possible. So my advice is if you feel anything in the back of your throat or unexplained lumps in your neck, don’t wait. Are you healthy and taking care of yourself? Good for you, but get to a doctor. Because the virus doesn’t care. The average HNSCC HPV+ patient is around 60, never smoked and presents in pretty good health.

Interestingly, the average age of the HNSCC has slowly increased recently. This increase in age is being driven by the utilization of the HPV vaccine. As more younger people get vaccinated, the only people contracting HPV+ cancer are those in older cohorts. It wasn’t until 1983 before the German virologist Harald zur Hausen discovered the link between cervical cancer and the HPV virus. A vaccine was developed in the ‘90s and first approved for use by the FDA in 2004.

We could nearly eliminate most of these cancers by getting 100% of the population vaccinated before they are at risk of getting the virus. But because, you know…vaccines…. We have an estimated vaccination rate at 68% of the population. And not to wade into news events, but our current secretary of health and human services called the main HPV vaccine ‘the most dangerous vaccine ever invented.’ Of course it’s not true. No vaccine is perfect. But it’s safe and effective. And did I mention it eliminates the cancer risk?

We really need to get everyone vaccinated who is healthy enough to get it. The recommendation as of now is to give the vaccine to children by age 12, before they become sexually active. However, you can still get a benefit from the vaccine up to age 45. By all means, do what you want. Live your life! It’s a free country. But of all the cancers that are out there this one seems pretty goddamn avoidable. Can we just get rid of the ones we can avoid? Check with your doctor, please!

Dr. AI

Perhaps nothing has charged up obsessive compulsive disorder about health issues than the advent of artificial intelligence. Hey don’t get me wrong, Dr. AI can be very helpful especially when it comes to gathering information or even preparing questions for your medical team. But what AI cannot do is be a doctor. Or any other medical professional.

While the information may well be good, the way it delivers the information can be unhelpful to downright harmful.

If you haven’t used AI, the personality most companies employ in the chat bot that helps you navigate getting answers to your burning questions, can be a bit, um, cloyingly positive. I ran into this myself when I first started feeding my favorite service my clinical notes, in particular before the doctor had reviewed them and given me a readout.

And sure, my model gave me good, common sense information. But it also packaged up the info with such positivity and comments about my character ‘because you’re on top of your health’ that it started to feel a bit like it was blowing smoke up my ass. So it’s great to hear what a result could mean before the doctor gave me the readout on the PET Scan, but it certainly didn’t mean what my model was saying.

Case in point: after the CT scan and PET scan, results showed no distant spread nor any cancer cells in the lymph nodes. These are all positive signs, right? Well, yes, but it doesn’t tell the whole story.

That Impressive Tumor

As we sat down with the whole team to discuss the case, my surgical oncologist, Dr. P, said that those factors are good. But that ‘impressive’ tumor? It’s not great. Because the tumor in my tonsil measured 4cm, to be able to remove it would require cutting into the soft palate, an area of the mouth that Dr. P suggests we wouldn’t be able to reconstruct. If surgery were performed, I probably would have swallowing and speaking issues the rest of my life. Surgery wasn’t an option unless I had no other choice.

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Because of the size of the tumor, I was given a Stage 3 diagnosis of SCC. Officially it was T3N0M0 (tumor stage 3, nodal lymph nodes stage 0, metastasis stage 0). So much for my AI model saying I was most likely a Stage 1 and a candidate for deescalation treatment that I’ve been reading about. That damn tumor!

Dr. P said that it’s growing out, and not into other structures in my mouth, and that’s a good thing. But it is big and getting rid of it isn’t going to be simple. Later when I read the clinical notes from the meeting, my situation was classified as an ‘Extremely Complex Case.’ Not so great, right?

At the meeting Dr P. laid out two options: immunotherapy and radiation or radiation and chemotherapy. I asked all the oncologists what they would do. “Excellent question,” said Dr. P, “Every doctor should be able to answer this. I would go with radiation and chemotherapy.” His thinking was that it’s the best known and most effective plan that works, or what the medical profession calls ‘standard of care.’ Let’s just get rid of it and move on!

Next, I turned to the medical oncologist, Dr. G. “I’d rather hear from Dr. K first.” Dr. K is the thoughtful, and well spoken radiation oncologist, who had just walked through the amazing benefits and the crazy harms of the radiation treatment required to cure the tumor in my tonsil. “Oh, I would try immunotherapy and chemotherapy first.”

“So would I,” said Dr. G, “It’s the treatment that gives you the most options.” Interesting. The chemo and radiation dudes are saying avoid the worst of chemo and radiation! That says something!

Radiation is almost like magic. It’s a wonderful treatment for cancer and does a great job at killing cancer cells, probably moreso than anything else in the oncologists’ playbook. The problem with head and neck cancer is what else is in the way of those cancer cells. Like, healthy cells we use to keep our head up, to breathe, to swallow, to taste, to create saliva so that you can eat and keep your teeth clean, to arteries that shuttle blood to and from your brain, skin to keep your neck covered and so on. All those also get zapped and destroyed in the process of killing the cancer cells. Despite how finely doctors focus the radiation.

And despite how successful HPV+ treatment is and the overwhelming success rate curing people who get it, the method of solving this riddle is also pretty brutal.

Radiation Blues

Radiation treatment for cancer is really a math problem. In order to kill all the cancer cells in my tonsil, Dr. K is suggesting that I will need 70 Gy (or gray, a measure of the amount of radiation that is absorbed by the body) of radiation pointed at my tumor. If they just administered 70gy in one or two sessions, you’d kill the cancer cells, for sure, but probably the patient as well from radiation exposure. So patients are given small doses of radiation over a span of weeks to get to gray required to blast their cancer cells.

If I opt to go directly to radiation and chemotherapy treatment, I am looking at 35 sessions of radiation given five days a week. The treatments start easy, but after a few weeks side effects start to pile up. My friend A says that the fatigue was crazy. “To the point where you feel like you can’t do anything without a struggle.” And so is the pain. A’s throat got so sore that he couldn’t eat solid food, even while on pretty hardcore painkillers. “I would swish a lidocaine rinse in my mouth and then slug down a 3000 calorie shake twice a day and I still lost a lot of weight.”

Weight loss is a huge issue, because of eating issues and recovery needs. After the first meeting with the team the nutritionist discussed having to surgically insert a feeding tube through my stomach with Jaimee and me. ‘No way I’m doing that,’ I thought as she talked about how little of an issue it was to temporarily help with getting enough calories to recover from the massive cell death from radiation.

And then there are the other side effects. Because of the location of the radiation, your saliva glands on the side you get radiated get permanently destroyed, leading to a lifetime of dry mouth and advanced tooth decay. Your taste buds are eliminated and don’t really come back for six months, maybe longer. Some patients say that everything they put in their mouth just tastes like salt. There can also be long term swallowing and speaking issues. “But remember this,” A reminded me later. “You will recover and you will be alive.” A says outside of the scar on his neck the only other issue he has to this day is a little dry mouth.

Even so, the path to getting to recovery sounds terrible.

During the meeting with the team, there was one kernel of an idea that sprung up in my head but I didn’t vocalize. I kept it to myself because I really was afraid of how everyone would react. Still it was taking up space in my head.

Up Next: Choose Nothing

Read Part 1

Part 2

It was one of those bright, brisk late spring mornings that the upper midwest throws at you. Early morning was chilly and cool, and by the time I stepped into my dentist’s office, you could tell it was going to be a nice day. This day I was scheduled to have three cavities filled on my left side. It’s payback for taking a couple years off from the dental care during Covid. My dentist Dr. S, is young and compassionate, with impeccable chair side manner. Since I started getting treated by him a year back, we’ve become friends. We talked incessantly about music and share artists. He was going back into the Jackson Browne catalog and I told him he had to listen to Late For The Sky, my favorite of his early releases.

During the session I had to have my mouth open for so long Dr. S inserted a bite block between my teeth so that I could rest my jaw. After the session, I remember very clearly standing in the kitchen and it felt almost like he had left something in the back of my mouth. I tried to clear it to no avail. That’s weird, but I thought it was related to the dental procedure. It was annoying, but not painful. I described it like a gritty feeling in the back of my throat, like someone forgot to clean the lint filter in the dryer, except it was in my mouth. Oh well.

A few weeks later, the feeling was still there. Is it getting worse? Maybe. We had friends visiting from out of town. When they left, I sent a note to my doctor and got an appointment in five days. Just to cover my bases, I called up Dr. S to see if he had any ideas. He insisted I come in. After our usual chit chat, he got down to it. He poked around in my mouth and quickly withdrew. “You have to go see an ENT right away.” He said it with urgency and concern. Ohhhhkay. He said that my left tonsil was very swollen, which II already knew. A week before I had prodded in my mouth with my finger and felt something soft and huge. What the fuck was that?

The Road In Front

Since my appointment with my primary doctor was the next day, I thought no problem. Dr. F walked me through everything it could be. He was concerned about an infection and maybe even more troubling, an abscess in my neck. He kept asking if I was feeling okay. No fever or chills?

Never felt healthier!

Besides the grit in the back of my mouth, I really did feel great. I had just overcome a nagging running injury that cut my mileage down, but had doubled down with weights and ab work. A couple years back, I quit alcohol and amped what was decently good dedication to the workouts to the next level.

I decided I’d judge my successes in years instead of months and was right in the middle of a three year plan to get stronger and build my running mileage back up. Sure I wasn’t 28 when I threw myself into distance running with glee, or even 40 when I became obsessed with bootcamp style workouts. But I thought I was doing a good job on channeling the workouts that could sustain me into my ‘80s or maybe ‘90s with a little luck.

When I opened my mouth, Dr. K poked around and said ‘Well, that’s not what I was expecting.’ He had thought it might be an infection, but wanted to make sure I got it cleared first with an ENT. Great! Let’s make that appointment. Also, just so you know I’m driving to Seattle in a couple days for 10 days of vacation, I told Dr. F.

We had moved to the midwest to be near Jaimee’s family in the spring of 2023. It has been a very rewarding move, but both of us were yearning to get a PNW backpack trip in with our friends. We spent a ton of time in the mountains when we lived in Seattle (Jaimee more than me) and there is just something about being in the Cascades that gets into your soul. In the spring we decided that a road trip was in order. We’d drive the 2000 miles so our dogs, who are getting up there in age, could experience the mountains with us again.

“Okay! Got it!” Dr. F called in his scheduling expert. “You stay right here, she’ll come to you and get you scheduled with an ENT immediately, I really want to get this cleared before you leave town.” The scheduling pro walked into the room with a thick, well-worn notebook and her battered laptop. I gave her my home coordinates and she triple checked her special scheduling grid on the laptop that looked like what I’d expect air traffic control consoles to look like. She worked the phone and got me an appointment the next day in Milwaukee. Great!

I was just about to pull out of the parking lot when the scheduling pro called me. “Dr. F says that the ENT will want you to have a CT Scan to review, so instead of waiting, I’m making an appointment right now. How soon can you get to the hospital? I plugged the address into my phone and was getting my first CT scan within the hour. Later that evening Dr. F called and said there wasn’t an abscess so I could start on medication to fight the infection he was sure I had.

Lunch Break Blues

The next day, the ENT office in Milwaukee seemed like a relic of a different time. Old charts of the nasal passage and ear on the wall didn’t help the dated medical furniture and dingy cabinets. The office overall seemed like it could use a paint job. The ENT walked in and was followed by a med student. He asked permission if she could observe. Of course!

The appointment went fast. He put a scope up my nose and got a view of the back of my mouth. Looking at the video after, it revealed a fairly enlarged tonsil. He then brought up the view of the CT scan and walked me through it. “You can see the mass here in your tonsil. It’s quite impressive.”

Impressive? That’s one way to put it!

If it was an infection, there would be liquid in the mass. But he said it was a solid mass. “Of course we won’t know until we perform a pathology on the tissue, but I think it’s cancer.”

Oh.

I think I saw the blood drain out of the med student’s face. Her eyes didn’t meet mine again the rest of the appointment.

Oh.

I went blank for just a second. There was an uncomfortable silence, except for the whirring of my mind kicking in. So many thoughts flooded in so quickly that it sounded like the crescendo of a symphony to me. Can they hear all this?

“What kind of cancer,” I squeaked.

“Most likely it’s squamous cell carcinoma. Testing will reveal if it’s related to HPV.”

Wait. What? Cancer. Cancer? Is this actually happening?

“I’m sorry to be the one to tell you this, but I can’t think of what else it could be.” Next he took a small tissue sample from my tonsil and told me I could expect the biopsy results by early next week.

But what about the fact that my CT scan didn’t show any cancer in the lymph nodes, something I had already researched I thought put me on a good path. Wasn’t that a good sign?

“Possibly.”

The word floated in the air with intent that screamed, ’stop getting your hopes up.’ “To know definitively you’ll need to schedule a PET scan. After the biopsy is done someone will call you to schedule that.”

Then what?

“Well, then you need to decide where to treat it. It will get referred to the team here at our medical group for next steps if you want to treat it here.” He stood up, ready for his next appointment. The med student already had her hand on the doorknob.

Did they just squeeze me in someone’s lunch break? It seemed like it.

Cancer. Fuck.

I exited the office and walked out into a perfect mid summer afternoon. Just stunning. I found a seat on a park bench, and for a couple minutes just watched people come and go. I wonder how many of these people just got shit news. Was it just me?

But what about me outliving everyone else and climbing mountains well into my ‘90s. What about my ability to survive and thrive, no matter the circumstances? Was all that just thrown out the window now? What does this all mean?

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However, I felt oddly calm. A couple years back, I started to have stomach pains and convinced myself that I had stage 4 colon cancer since I had yet to schedule a colonoscopy a few years past when it was recommended. I crumbled and nobody could talk me out of it. Not my primary physician, not the gastroenterologist, not my wife. I was in a doom loop that only resolved the minute after my colonoscopy came out clean, just as my gastro doc suggested.

But now, someone just told me that I had cancer and my reaction was ‘okay.’ Not super happy about it, for sure. But no desperation. No panic. I’m sure part of it is that it didn’t feel like anything. Definitely not a sickness. Just a little tickle in the back of my throat. That’s cancer? Like, how?

I called Jaimee and shared the news. Shock. Upset. But steady. Resolute. She was a rock. Should we cancel the trip? Absolutely not! More than ever we needed the mountains.

It was a tough couple days. I really didn’t want to say anything to anyone. I mentioned that I’d rather keep it under wraps until we knew more but Jaimee put the brakes on that thinking. “You know, this isn’t just about you, right.” Oh right. It’s just not me! Duh! I should have figured that out. It may be obvious to everyone who goes through this, but you definitely do not travel this path alone.

And honestly part of it for me was that maybe I can just ignore it and treat it and everything would be good. No need to tell anyone about it until after it was fixed. But Jaimee pointed out what I should have understood: we are going to walk this path together. While I would have to get treated, she was going to be impacted in every way I was going to as well. Maybe even worse. And then it struck me what it would be like if the roles were reversed — if I was getting this news about Jaimee. I would be a total mess. So maybe it’s better this way.

But cancer? Really?

Up Next: Can A Road Trip Cure Cancer

Part 1

It is all new to us. We sit in the waiting room. A look around the room and I think I’m probably the youngest here, even if that’s not the case. I like to think, probably stupidly, that I look younger. But I’m fit. And I made a conscious decision since diagnosis day to clean up good. At my first meeting with my medical team at St Luke’s, I wore the best outfit I had. “Dress for the care you want,” Jaimee said of my strategy.

I follow that same dress code today. Button down shirt and nice fitting pants. I am an outlier. Average age is 70 plus. A cute, yet even older grandmother is wheeled into the waiting room by who I presumed is her middle aged daughter. The grandma doesn’t look good. Frail and thin and splotchy hair. I flash her a little smile which she returns.

Most people wear a look on their face that is somewhere near tough determination and exhaustion. It is my first encounter with chemo. The first infusion. Poison that will course through my veins, designed to stop the tumor — which is growing relatively rapidly in my tonsil — in its tracks.

I get called into the lab room. It is warm and two patient seats are aligned across from one another. The tech walks me through the procedure of connecting to my newly planted chemo port, flushing it with fluids and then drawing blood for my pre-treatment labs. No big deal.

I come back out to the waiting ara and rejoin Jaimee. We are both calm, but there seemed to be a bit of underneath worry. Natural, of course. If I were in her shoes I would be absolutely freaking out. In so many respects, it’s easier for it to happen to me. If it had to happen to anybody. Cancer. Yikes!

A few minutes later the nurse came and get us. Measurements. Weight, still 150. Height, still 5’6”. I’ve been shrinking for the past 15 years but I passed under 5’6” earlier this year. A thought passea through my mind: would the drugs shrink me even more? Wait, what?

The fact is I don’t know what I’m going to be like after all the medical procedures I’ll need to stop the tumor, then slowly destroy every cancer cell in my body. But for sure, I will change. That’s what everyone who has gone through it tells me. For someone who is trying to preserve my healthy lifestyle, this is a tough reality.

Longevity had been the goal. The six days week of working out. Cutting out alcohol completely. Really super solid diet. But will rounds of chemo, potentially surgery and almost a guarantee of blasting my neck and mouth with radiation make me old? I like to think that I don’t look the 60 years I turned this January. I hardly have a wrinkle on my face. Outside of some slight skin damage from years patrolling outfield in adult league baseball and being in the sun all summer long, I thought I might pass for 50. What will I look like after this?

The nurse deposits us in an exam room. But no exam today. We are waiting for Dr. G, my medical oncologist who put together the plan to cure the cancer. Most of the reason I’m in this room today is because I really vibed with his approach when we met the whole team a few weeks back.

During the meeting with a half dozen doctors and specialists, he was direct, blunt, a bit of cynic and seemed to have little patience for niceties. Everyone else was dressed like me in the meeting. Sharp button downs. Dr. G wore maybe Costco khakis, and an off brand fleece pullover, and is that a stain on it? Possibly.

He was comfortable and compassionate, but also got to the fucking point. “I think the best thing to do, in your case, is give you a round of immunotherapy with a couple of chemo drugs to see if we can shrink it, but your numbers are off by one point, so I doubt your insurance company will go along. We will still try, but just be ready for the rejection.” I think maybe I saw one of his colleague’s mouths agape. “Hey I just like to tell it like it is. That’s me.” You’re hired!

Dr. G had gotten the plan approved after all. He waltzes in to walk us through this first round and let us know what to expect. He seems to think that while there could be some side effects from these rounds, I’ll tolerate it ‘fine.’ It probably speaks more to how hardcore cancer drugs he has to administer to some patients. He mentions that both chemo drugs carboplatin and fluorouracil (or F5U) have lower toxicity than other drugs that normally are prescribed.

He asks about my education class that I completed with a nurse on the medical team, where they walked though the myriad of shit that can happen to your body while on chemo and immuno drugs, from stomach irritation all the way up to ending up in the hospital. “It tends to freak people out,” he says about the class. Oh yeah. I am freaked. Mission accomplished!

If there’s a theme to just about everything planned for my treatment so far it’s this: your mileage may vary. How sick you get, how much the immunotherapy drugs fire up your system, how effective the drugs will be at shrinking the tumor. There are no guarantees that you won’t be praying to the porcelain god for hours on end or maybe the tumor just keeps growing. All these drugs are safe enough to have received FDA approval. But not well known enough to give you much guarantee. Such is life when you’re the medical experiment.

Dr. G seemed confident. “This was the right path,” he says about our decision to treat the tumor with two rounds of chemo and pair it with pembrolizumab, Merck’s superstar immunotherapy cancer drug that’s know by its brand name of Keytruda. If you are as old as fuck as I am and watch any cable news I’m sure you’ve seen the TV spot for it, featuring well scrubbed people in their 70s or 80s riding bikes, playing horseshoes, petting their dogs and then the tagline ‘a chance to live longer with Keytruda.’ Is this really happening to me? Yikes!

Key Play

Since receiving FDA approval in 2014 pembrolizumab was first used to treat melanoma and non-small cell lung cancer. Even more impressively than treating the diseases, the recurrence rate of those cancers were sharply lower when Keytruda was employed. Since then, FDA approvals have come for treating many different cancers, including my fucking tumor.

Immunotherapy treatments have massively altered the cancer care landscape. By utilizing our immune system to target cancer cells, many cancers that formerly were a death sentence are now treatable as a long term illness. Of course there are risks. Fun conditions like colitis, myocarditis, thyroiditis all are possible. It’s like by turning on your immune system to fight cancer, it just might keep going and take on other organs in your body to finish off the job. Crazy stuff!

Along with the adverse outcomes is the fact that the drugs don’t stimulate the immune system for everyone, making the treatment useless. Might I also mention ungodly expensive and useless. After reading my explanation of benefits from the first infusion, the retail charge for my 200mg of Keytruda was an eye watering $65,000. Who pays that? Not my insurance company who has a negotiated rate with Merck but it was still $17,000. Compare that to $500 for the infusion of carboplatin, one of the generic chemo drugs I got in tandem with Keytruda. Obscene? Without a doubt.

But somehow Dr. G sweet talked my insurance company into 3 rounds of infusion for the first treatment and then 12 monthly maintenance infusions of the drug. Total: $255,000! It’s a good thing I went for gold plan on the Healthcare exchange last year, meaning our all in costs for everything this year is $7800 out of pocket.

After looking at the lab results and showing me what most likely will happen on treatment (white and red blood counts going to shit, leading to narcolepsy-grade fatigue and dropping my ability to fight off even simple cold to boy-in-the-bubble level) Dr G walks us back to the infusion room. A very softly lit open area of four recliners in each corner of the four pod that administer infusions. He asks if I have seen this area yet. “No,” I say. “It’s my first cancer!” “Well let’s make sure it’s your last,” G quips back. The Bromance meter hits 100!

Dr. G introduces me to the lead nurse, S, who shows me to a seat. “Normally you can just choose any empty seat,” like the corner seat of the building with a perfect view of the lushly green outside area, for example. “Today we want to keep an eye on you.” Reactions to the poison we’re about to pump into my blood is wild. A hospital stay while getting pumped full of steroids to keep me alive after my body reacts to one or the other isn’t out of the question. We just won’t know until we try.

I get hooked up with sunny efficiency by the nurse. First saline, and then two steroids designed to make sure I don’t start throwing up in the parking lot after the treatment. Then Keytruda. Every time something new hits the port, my chest feels a bit weird. A splash of cold. And then nothing. Thirty minutes later, another flush, then carboplatin.

Platinum Dreams

Carboplatin and its big badass brother, cisplatin (both platinum based), are ancient in terms of chemo drugs. Cisplatin was invented in the Michigan State University lab in 1965. It was first approved by the FDA in 1978. While it is incredibly effective at treating a wide variety of cancers, its toxicity is also legendary. Kidney damage, nerve damage, severe nausea and vomiting and hearing loss are all pretty common. Carboplatin was developed by at the UK chemical company Johnson Matthey in the 1980s as a drug that is close to effective as its predecessor, but with much lower toxicity.

My friend A (OPSCC HPV+ class of 2017) told me about cisplatin and how much he rearranged his cocktail of chemo to avoid it. As a musician he was afraid of losing his hearing, which happens with regularity and sometimes extremely quickly. But I don’t have to worry about it right now. Our plan avoids the worse toxicities of the chemo. I call it my training wheels chemo round.

After the carbo, I am hooked up with a pump that I get to take home with me. It contains a drip of the other chemo drug, 5FU. It will continuously administer into my body for the next 96 hours through my port. Great, I get the take home edition too! Just in case hanging out in the infusion room wasn’t fun enough.

Soon after my first drug starts dripping into my port, the kindly looking grandmother takes a seat across from me. Her daughter, seems about as happy to be there as I am. I have AirPods in, but I’m not playing anything.

And then the complaints start. Grandma has a problem with a niece of hers. “I told her to get rid of that dog, but no she doesn’t listen, and it’s crapping all over my lawn.” Her voice was sharp and tone one of a nonstop lecture, about 180 degrees different than I expected. The daughter barely pays attention, delving deeper into Candy Crush or whatever is going on her phone. And it keeps going and going. I find something noisy and crank up the volume. I can’t handle hearing this poision in my ear as well as my port. One at a time dude!

Others in my infusion area: there’s a jokey guy that keeps issuing wisecracks every time the nurse checks on him. As anyone who has spent a fuckload of time at the doctor, you spend like half your time reciting your birthday. When the joker says his I almost fall off my chair. Did he say 1972? He’s seven years younger than me? How? For the most part, it’s what you’d expect in the infusion ward. Patients in their late 50s, 60s, 70s and 80s even. Nobody looks calm, but everyone seems like a seasoned pro at this. But when the 16 year old girl takes a seat in an infusion chair during my second round, my heart gets squeezed. Why, for fucks sake? It’s just not fair! But then again, is any of this fair?

Up Next: How This All Started

One day I felt something gritty in the back of my throat after a dental procedure. Six weeks later we were staring at imaging screens, meeting teams of specialists, and getting thrown into a world that I had only ever heard in other people’s stories.

Of course, I always knew that illness could drop into anyone’s life, including mine. Susan Sontag in her book Illness As A Metaphor maybe put it best:

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”

We get to pretend that second world doesn’t exist. I just arrived at the border with my passport in hand.

What I’m doing here

I’ve been writing about my experience from the moment I entered the cancer world. The waiting rooms, the scans, the ‘discussions’ with doctors, the absurdities, the down days, the weird moments of light, the people you meet, the things you learn about bodies and systems and yourself.

Some of it is humorous (hopefully).

A lot of it isn’t.

But it’s real.

I’m sharing it here in a series called Milestones — each piece a snapshot from the road: the shock, the bureaucracy, the choices, the treatments, the small mercies, the big questions, and, hopefully, what it all means.

But this is not just my story

Sickness doesn’t happen in isolation. It hits the patient, the partner, the friends, the coworkers, the kids, the people who barely know you but now suddenly do.

Milestones isn’t meant to be a solo project.

It’s an invitation.

If you’ve been through cancer, as a patient, caregiver, friend, partner, or bystander, I would love to hear from you. It would be great if this could become a place where people can speak plainly about the things that actually happen inside the kingdom of the sick, without euphemisms or forced optimism.

As I go along my journey I’ll also try to host Substack Live sessions and hopefully have some conversations with others who have helped me going through these circumstances.

Why tell this story at all?

Because the moment you get a diagnosis, you’re handed a new life you didn’t ask for. You lose certain illusions, but you also gain a kind of clarity. Stories help. They helped me. Maybe they’ll help someone else.

Where this starts?

The first installment is Infusion Day, the moment I walked into a chemo room for the first time. It’s where everything became real.

Thank you for reading, for being here, for showing up.

Let’s see where this goes!

About Paid Tiers:

I do have a monthly and annual plan for Milestones, and I would appreciate the generosity if anyone would do the honor of helping my family defray costs of treatment and lost work. But I’m also not placing any content behind a paywall because, fuck that! Reading, commenting, sharing are all other ways that you can contribute as well.

Let me know what you think.

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The Fine Print

Just to be clear with the readers of Milestones: I’m not a medical expert, researcher nor a physician. The best that can be said about me is that I’m a patient that is paying attention with a slight obsession of doing research combined with the tendencies you get from a former journalist. Most of my pieces here are 1) personal recollections of going through treatments and talking to medical experts combined with 2) a desire to do the research and 3) an obsession to explain (simplify? dumb down?) complicated medical technology in a consumable way. How successful am I at that? Open question.