This week my husband rang the bell, twice. “Ringing the bell” is a tradition in cancer treatment, signifying someone has completed chemotherapy or radiation. It’s accompanied by great fanfare. Medical staff, family, and other patients all gather around and clap. They applaud to acknowledge what the patient has endured, to celebrate the end of treatment, and to express hope it has been successful.
Often success means a life has been saved. Sometimes success is limited to the promise of more precious time. Based on the data, we are optimistic Dempsey will be in the first group.
He had seven chemo treatments. The protocol was a relatively low dose of cisplatin, and Dempsey tolerated it well. He went into the machine for thirty-five photon radiation treatments, however, and that was everything we had been warned to expect.
Radiation for oropharyngeal cancers is tough because it targets the delicate tissues inside the mouth and throat. By the second week, Dempsey could no longer differentiate among food or drink. Everything tasted like wet cardboard. Saliva production slowed to almost nothing, and a thick ropy mucus began to build up in his throat. In the third week he stopped eating altogether, and by the fourth week he could no longer speak. At the end of the fourth week, the skin on his neck began to crack open and bleed.
Unlike many other treatment centers, CTCA orders a feeding tube for head and neck patients prior to radiation. It’s a prophylactic measure, because malnutrition is a real problem in cancer treatment. Without sufficient protein, the body cannot muster the resources to fight off the disease.
CTCA emphasizes complementary treatments and organic foods, so when I opened the canned nutritional formula ordered by the dietitian and read the label, I was shocked. It was corn and soy based (almost all corn and soy products are genetically modified) and full of chemicals. The ingredients reminded me of pet food we’d looked at in the past and rejected. Still, he needed food, so we began using it.
We are pretty aware of what we eat. We’re mostly vegan, although we stray from time to time. We occasionally indulge in a plate of cheese enchiladas, and every few months we may go out for ice cream. We sometimes eat a little meat, especially when we travel and sample the local offerings. But we eat no processed food and no chemicals. We buy our produce at the farmer’s market, from a local organic farm.
Dempsey’s body rejected the food immediately. The feedings were followed by hours of vomiting and diarrhea, and he grew weak. I experimented with making a formula, but when I produced enough calories and grams of protein, the volume was more than he could hold.
After a week, a friend suggested a different formula, and the dietitian recommended it, as well. It’s a whole foods, vegan formulation. The cost was six times the first product, but eventually our insurance company agreed to pay for it. From the very first pouch he tried, Dempsey’s body accepted it.
The food issue has been interesting to experience. I am eating by myself now, because although he can’t taste anything, he can smell, and he misses real food. We see now how much of our daily interactions involve food, from preparing it to eating, to putting away leftovers and planning our next meal. We love to eat out, and we’ll taste food from each other’s plate, and discuss what we’re going to do afterwards. Eating now is lonely, yet I notice I’m doing a lot of stress eating. Dempsey’s lost weight, but I’m pretty sure I’ve gained.
Except for quick trips out for food or shopping and an occasional morning walk, I am sticking close to him. He is on a lot of pain medication: opioids, a fentanyl patch, and occasional injections. I monitor his meds to be sure he doesn’t take too much, and to time his doses.
I’m also dressing his burns, which they taught me to do at the Center. Although he goes in every few days for wound care, the dressing must be changed twice daily. It’s a complicated, intimidating process.
I’m not squeamish, but I admit I am a little freaked out about the physical side of this process. It is unsettling to see the holes in his body, the chemo port in his chest, the tube in his stomach, and the burns. Any care I give him seems inadequate compared to what he’s going through.
The scariest thing happened ten days ago, when Dempsey collapsed just before radiation. They couldn’t find a blood pressure, and worried he was having a heart attack. An ambulance came and rushed us to another hospital, once with a cardiac unit.
In the emergency room they did tests, including a CAT scan to be sure there was no blood clot. They determined he was just badly dehydrated, with severely diminished blood volume. They kept him overnight, administering fluids continuously.
Several times he felt shaky, and went upstairs to the CTCA internal medicine clinic for IV hydration. Annie, Dempsey’s speech therapist, said cancer treatment “just sucks the water out of your body.” Finally, after he began using the new formula, his hydration stabilized. He remains exhausted most of the time.
Although chemo and radiation have ended, we will be here for a while longer. The effects of radiation are cumulative, and the radiologist says next week will probably be the worst, in terms of damage and pain. After that, we expect, he will turn the corner and begin to heal.
He will have ongoing appointments for wound care and pain management as long as he needs them. The therapists are encouraging him to try to eat a few bites of soft food within the next few weeks. Their goal is to remove the feeding tube by the six-month mark. We’ve been told the exhaustion he is experiencing will continue for some months.
At this point, Dempsey is in significant pain, but he is moving past the emotional overwhelm of the last few weeks. He is eager to begin feeling better, and ready to do whatever is necessary to recover completely.