In 2002 I was a healthy 51-year-old man.
In 2003 I was daily radiated for six weeks at Johns Hopkins Cancer Center for neck cancer.
Radiation cured my cancer, but its long-term adverse effects are killing me. Everyone knows that radiation kills cancer cells. The truth is more subtle.
Normal cells that are damaged begin a long-term attack on themselves and their surroundings.
The hospital focused my radiation per this map.
Even though I am a medical doctor by training, I was a naive cancer patient. The epidemilogical data in 2003 for stage III base of tongue cancer said that 70% of patients would die of the cancer before 5 years had passed. My insurance at first would not cover Hopkins fees. Then the radiation began its immediate adverse effects of burnt skin, no saliva, and no swallow reflex. I was on amifostine as a radioprotectant for healthy cells. However, I developed an anaphylatic reaction to the amifostine, was hospitalized for that, and radiation had to stop for a week. In such circumstances, even a medically sophisticated patient tends to stop wanting to continuously research his options and question each doctor's recommendation. Insted I reverted to the role most popular among patients which is to worship the doctor and do whatever the doctor said. Furthermore, I was raised in a military family with a Germanic tradition of 'no pain, no gain' and accept without complaining any amount of short term pain on when convinved of adequat long-term gain. So when my radiation oncologist after the 1-week, unexpected break in radiation treatments asked me to accept an additional week of radiation to compensate for his initial premise that the 6-week plan would be interrupted, I only asked, "Will the long-term gain exceed the short-term pain?". He responded 'absolutely', and I agreed to boost the total radiation from 65 to 70 grays. If I knew then what I know now, then I would have asked for time to further investigate the costs and benefits. That experience has tainted my subsequent reactions to recommended treatments, as will be evident later in this narrative.
Obstructive sleep apnea appeared during my radiation treatment in 2003.
In this audiovideo interview by the Sleep Apnea Association, I explain how radiation makes
my sleep apnea experience different from that for typical sleep apnea patients. I spent years unsuccessfully trying to comply with CPAP therapy.
I filmed my CPAP use with an infrared camera, as this frame from one video shows.
In 2005, muscles in my neck and shoulders began twitching.
Radiation killed capillaries feeding nerves. Those nerves innervated the sternocleidomastoid, trapezius, and supraspinatus muscles. Without nerve innervation, those muscles twitched for a year and then died.
Missing neck and shoulder muscles.
In 2009, I was diagnosed with various autonomic nervous failures. Prime manifestation of those failures are paroxysmal hypertension and orthostatic hypotension. Pathophysiologically the radiation killed the carotid body which monitors blood pressure, and without a functioning carotid body, when my blood pressure rises (or drops) my body is unable to sense it or correct for it -- the medical term is afferent baroreflex failure.
24-hour blood pressure monitor in my normal, uneventful day shows
my blood pressure oscillate between 220/150 and 70/40.
You might anticipate by now that the story only gets worse. Biology has a fine way of keeping you alive when you are basically healthy -- your body reacts to a disturbance by recruiting healthy resources to restore balance. However, as you decay, your body's attempt to counteract an imbalance is ineffectual and instead one imbalance precitipates other imbalances.
I was eating and talking in a relatively normal way. My sign of an eating problem occurred one day in 2018 when I could not swallow any amount of a pizza slice. I would chew, form a bolus of pizza and saliva, and try to push the bolus down my throat, but the bolus refused to go. My doctors did barium swallow and manometric studies and concluded that I had no effetive oral swallow and severe peristaltic dysfunction which means that the esophagus is unable to move a bolus towards the stomach. I only swallow due to somehow positioning myself by sucking a semi-liquid through a straw into the middle of my mouth and recruiting gravity
to move it to the stomach. Additionally, due to a shut lower esophageal junction, the esophagus ballons with what I am able to get into it.
On your left are the results of esophageal manometry in the year 2018 which showed severe peristaltic dysfunction. On the right is an image from a 2024 barium swallow study which shows the ballooned esophagus.
Barium swallow study shows a bolus stuck in the epiglottic valleculae.
At the same time as the dyphagia became severe in 2018, the speech slurring became much worse.
Fibrosis of the vocal cords had progressed enough that my ability to get meaningful, audible sounds from the air coming from my lungs was lost. While various devices can be employed to facilitate artifical speech, no cure is possible.
Due to fibrosis, the left vocal cord is 100% shut and the
right 80%. No normal sound can be generated.
These problems of dysphagia and dysphonia began with damage to the oropharygneal cavity. The mandible and teeth mark the beginning of the oral cavity. A long-term danger for radiated head and neck cancer patients is decay of mandible and teeth. If a tooth needs to be extracted, the dentists worry about mandibular osteoradionecrosis which happens when the socket left from the extracted tooth fails to heal, the mandible becomes infected, and surgeons must remove the mandible.
I invest inordinate amounts of time in dental hygiene. But the effort is futile against the ongoing damage from radiation to the mandible.
In 2019 I developed such sharp pains in my lower right chest that I could not move and needed to be hospitalized. Doctors discovered a softball-sized abscess in my lower right chest secondary to continual aspiration pneumonitis. I was hospitalized for a week with treatments including a drainage tube into the abscess.
A chest tube was implanted and kept in place for four days to drain the pulmonary abscess.
One consequence of this ongoing aspiration pneumonitis is an ever worsening COPD as reflected in declining Forced Expiratory Volume which should normally be 3.5 liters/second but in me is now 1.7 liters/second. Treatment for aspiration pneumonia is difficult as one is continually swallowing saliva and without proper ability to swallow, one aspirates some of the saliva. The only proper treatment is laryngectomy which is 6 hour surgery to complete remove the larynx and thus eliminate any connection to the oral cavity. My doctors all encourage me to, at least, accept a percutaneous gastrostomy tube so that nutrition can straight from a bottle into that tube, through my a tube in my abdomen, and into the stomach, but I have resisted that too.
In 2023 radiation's latest gift was 100% blockage of the left internal carotid artery. Despite adequate attention from cardiologists and cardiovascular surgeons, I failed to get a carotid stent installed in time.
In my CT of the neck, blood flows from the right internal carotid artery to the brain but not from the left.
When I go from sitting to standing, sometimes my brain gets so little oxygen that I fall unconscious to the ground. On Sep 4, 2024, as I tried to rise from the toilet, I fell against the side of the bath tub and 5 ribs broke. That led to pneumonia, my blood pressure oscillating between 250/150 and 65/40, and hospitalization. In 2025, I fell again with more broken ribs and now use an elevated toilet seat with hand rails and a shower chair.
Roy in his hospital bed.
If you meet me face-to-face, then you don't see the autonomic nervous system failure. What you first notice is my dropped head. If I try to speak, then you can't understand me. Whereas before cancer treatment I thrived on introducing myself to strangers, I now stay alone in my room and communicate by email, even with my wife. The medical profession has been wonderful in trying to help, but the problem is a progessive, irreversible disease, namely long-term adverse effects of radation. Many people are in a much worse situation than me. Many diseases are progressive and irreversible, such as some dementias, cancers, and heart diseases. My mission is to help people appreciate the problems of progessive, irreversible disease and support efforts by healthcare providers, patients, and the community to improve the end of life.
