Husband, Father & Senior Vice President, American Geophysical Union; Survivor of Stage 2/3 HPV-attributed Oropharyngeal Cancer; Charlottesville, VA
Thad’s cancer journey started in the spring of 2019, when he noticed a pea-sized lump on the side of his neck while taking a shower. He was just healing from a pretty serious respiratory infection, and he didn’t think that much of it. His left tonsil was still swollen, and Thad figured it was a clogged lymph duct or something similar.
Three weeks later, his tonsil was still swollen, and he felt that the lump on the side of his neck was slowly getting bigger, which started to worry him. So, he scheduled an appointment with his doctor to get it checked out.
His doctor informed him that there may be several possible causes and that he wanted to run bloodwork. The bloodwork came back inconclusive, and he recommended an ultrasound to get more information.
By this point, Thad and his wife became very concerned. The list of possible causes still had some non-threatening possibilities on it, but Thad had a bad feeling in his gut. He felt like things were out of control and accelerating, with an unknown destination.
The ultrasound was a turning point. Thad has three children, so he’d been to several ultrasounds before. As the technician moved the wand over the left side of his neck, she started taking pictures and measurements of several circular bodies, and that sinking feeling of Thad’s got a lot stronger. “I didn’t know exactly what it was, I just knew it wasn’t good,” explained Thad.
The ultrasound results lead to a CT scan, although his doctor still did not give him even a preliminary diagnosis. Thad was just instructed to get the scan.
“I was fed up with not knowing, so at the CT imaging center, I asked for copies of all images and the recommendation report from the radiologist, which they said they would send me in a day or two,” added Thad.
The report appeared in his email the following day. He quickly scanned down through the methodology, etc. to the findings, where his eyes froze on this passage:
1. Partially cystic nodal conglomerate masses in the left neck. Findings are suspicious for nodal metastatic spread of malignancy most likely an oropharyngeal squamous cell carcinoma. Cystic nodes are strongly associated with HPV positivity. Lymphoma considered less likely.
2. PET/CT would likely provide more definitive staging.
He read it again. And again.
“I’m not sure how long I sat and stared at those words, malignancy and metastatic, unable to truly accept what they meant,” expressed Thad. “I started crying, and I called to my wife – she read the report, and then we fell apart. You can try to prepare for something like this, but no matter how much reading you do, the actual experience is something completely outside your realm of understanding.”
“Some quick (and we would later learn, inaccurate) research on cancer.org and cancer.gov lead us to believe my diagnosis would be stage 3, as I had a tumor of greater than 3cm and it had already metastasized. Survival rates were below 50%, and suddenly all I wanted was to survive until December so I could at least have Christmas with my family one last time. Everything else just vanished.”
Thad then called his doctor, who (again, without telling him exactly the diagnosis) said he was referring him to a head and neck specialist. Feeling frustrated, Thad decided to start blazing his own trail. He found specialists in his area, read bios and backgrounds, and immediately set an appointment with a head and neck specialist of his choosing; as luck would have it, he was available the next day.
The head and neck specialist looked at the tests, felt the lumps, examined Thad’s throat, and said it definitely looked like oropharyngeal cancer, probably HPV-mediated. Thad and his wife immediately asked for an explanation and suddenly his staging and odds got a whole lot better. They left the appointment with a referral for a biopsy clinic and a whole lot more hope.
The biopsy two days later confirmed the diagnosis. He would have to go back to have a tissue sample from his throat to identify the primary tumor, and then on to meet an oncologist.
The whole diagnosis period had taken about three weeks, although it felt like an eternity to the Luries. Now that they had come to grips with the cancer diagnosis, they wanted to start killing it as soon as possible.
The following week, he met with the radiation and medical oncology teams at SCL Health on the same day. Selecting medical and radiation teams at the same facility was key.
“I thought having my treatments at the same facility would make everything smoother to coordinate, and since it was close to my house, I figured that would make driving to and from every day easier, as well,” explained Thad. “I thanked myself for this decision more times than I can count – for the last half of my radiation treatment, the idea of driving 35 minutes to and from treatment would have been laughable.”
Thad underwent seven chemotherapy infusions and also received radiation treatment. His whole radiation team was fantastic – the techs, the nurses, and his doctor. They laid out a clear recommended plan – dates, times, expectations, side effects — everything.
“We had to wait a couple of weeks to get on the schedule, and before I knew it, the first big milestone came: mask day and my PET scan. Making the mask wasn’t too bad, and thankfully I’m not claustrophobic, so wearing it for the PET scan didn’t cause any real issues,” explained Thad. “The PET results were as expected – somewhere around 10 tumors, all on the left side of my neck. My team recommended bilateral radiation in case there were microscopic tumors on my right side that didn’t show up on the scan – seeing as it had already metastasized, they thought it likely and wanted to be safe.”
Once staging was complete, Thad met with the team again and prepared to start treatment.
“As it happened, I had a lot of advantages. I started treatment at a solid 223 pounds. As an amateur powerlifter, I had a lot of extra mass, although we knew that would melt away once I started eating less and not lifting. I also had a lot of experience drinking calories via supplements and also drinking things that didn’t taste very good. Lastly, from 20 years of lifting, I knew how to put my head down and grind when I had to. In the end, all of these attributes would be critical to my success,” explained Thad.
Thad had two goals throughout treatment: to do everything the doctors told him and give the treatment the best possible chance to work, and to avoid getting a feeding tube.
He spent his last two weeks before treatment lifting, eating everything in sight (trying to add weight before treatment started), loving on his family, and getting ahead at work, knowing he wouldn’t be able to spend as many hours working as treatment progressed. Thad and his wife set up a meditation corner, found healing stones and lotions, and prepared for the worst couple months of their lives.
His first day of radiation was on May 28th. “Being bolted to the table was a little intimidating, but after 20 minutes, it was one down, 34 to go. I even had a whiteboard in my office that I would update every day. It’s actually still there, with zeroes in the radiation and chemo boxes. I still look at it every day.”
For Thad, the first couple of weeks were hard, but not insurmountable. He still had enough energy to weightlift and work, and his throat and skin were in decent shape.
By the end of the third week, he was going downhill fast. He was having trouble eating solids, and his saliva was basically gone. He then shifted to an all-liquid diet and stopped lifting so his body could focus all its energy on healing the damage the radiation was doing. Thad’s taste buds were basically gone; he couldn’t taste food, water tasted like metal, and he had a constant “brackish” flavor in his mouth.
By the end of the fifth week, his throat was in tough shape, and he had radiation sores on his tongue, which were really painful. His doctor prescribed lidocaine lollipops that he could just hold on the sores to numb them, and that allowed him to keep forcing down protein shakes.
“I was exhausted basically all the time – there is a weird phenomenon in which you sleep 9 or 10 hours overnight and wake up feeling like you haven’t rested at all – your body clock gets confused, and because you’re doing the exact same thing every day, I just started calling it Groundhog Day. Wake up. Numbing pop. Protein shake. Saltwater rinse. Radiation rinse. Drive to treatment. Get zapped. Drive home. Saltwater rinse. Radiation rinse. Numbing pop. Protein shake. Saltwater rinse. Nap. Numbing pop. Protein shake. Saltwater rinse. Radiation rinse. Bed. Wake up. Numbing pop. Back to bed. Wake up. Numbing pop. Protein shake. And so on.”
All of Thad’s facial hair fell out. The skin on the sides of his neck went from mild burn to bad burn to just destroyed. He rotated between Aquaphor, calendula lotion, and CBD cream, and his doctors said it was really working, although it was still pretty painful.
Thad then developed mucositis in his sixth week of treatment and started on pain meds – ibuprofen at first, and then oxycontin when it got so bad he couldn’t even swallow water.
“I woke up multiple times a night with my mouth stuck shut and dry – prying it open to get a swallow of water was pretty unpleasant. My unexpected saving grace here was my CPAP machine (I have obstructive sleep apnea) – I dialed up the humidity to max and it pumped warm, moist air into my throat all night, every night, which my doctors think helped my throat tolerate the treatment better than normal,” explained Thad.
Thad “stumbled across the finish line” in mid-July, 40 pounds lighter and constantly exhausted. The week following was the worst for him. He then slowly started healing, though. Two weeks post-treatment, his energy started coming back, and another week after that he was able to eat something solid (a fried egg white) for the first time in almost two months. He kept at it, ate more, made his way back to the gym, and truly started to heal, with his eye on the final milestone – the PET scan.
Thankfully, Thad’s story has a happy ending (so far). The treatments were successful, and the PET scan showed no abnormal cancerous activity. He still has follow-ups every six weeks or so, alternating between his head and neck specialist and his oncology team, and so far, everything is as it should be.
“I’m still healing, both physically and mentally. My saliva is about halfway back, my taste somewhat less than that, and I cannot taste sweet at all (not the worst thing – desserts have no appeal to me now). I’ve gained back 25 of the 40 pounds I lost, and some (though not all) of my facial hair has grown back. I still have tinnitus from the chemo, and I also have Lhermitte’s Syndrome, which they believe is an unusual side effect from the radiation/chemo combo.”
“The important thing, though, is that I’m alive and mostly healthy, and looking forward. I have tremendous gratitude for my radiation oncology team and how they carried me through some of the worst days of my life. My nurses always watched out for me, knew my case and my body inside out, and were constantly vigilant not only in their treatment duties, but their love and care as humans. Dr. Stenmark was similarly amazing – always available, understanding my urgency to know what was going on at the beginning and helping me balance that with his expertise and confidence in our path forward. I believe strongly that the success of my treatment was closely tied to the competence and compassion of my team.”