Treatment: The Home Stretch

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.

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18 thoughts on “Treatment: The Home Stretch

  1. In my difficult 20’s, I discovered Albert Camu’s, “In the midst of winter, I discovered in me an invincible summer.” I kept this pocket size framed quote with me at all times. It remained central to my heart for years until one of my children in his 20’s went through his own difficult journey. I gave it to him and it remains with him to this day. Today, I continue prayers for Dempsey and you and pass on to you my hope for your own invincible summer. Love, Sandra

  2. Jillian . . . thank you so much for taking the time to write and share with us. This is an amazing journey you both are taking. As tough as it is, by sharing with us gives us an insight of another human-being story and the battle that is being fought. We also get to witness the power of prayer in works and to see the amazing miracles of strength, hope and love that is shared by the Universe and by the two of you. I just know the Angel of Wellness is over you both! Sending ripples of love from the two of us and hugs to you both!

  3. Sandra, your words gave me goose bumps. I’d read that quote, and completely forgotten it. How perfect for those times in life that seem almost too much to manage. And as a mother, I love that you passed that gift along to your son. Can you imagine that one day he may give it to another generation?

  4. You and Dempsey have come so far! I’m still waiting for one of woo-woo machines they fix you with on the Enterprise. I keep hearing Doc, on discovery of kidney dialysis in a previous time. “Barbarians!” he commented on the procedure. All of this treatment sounds barbaric, though. People can endure a great deal and come out the other side happily. I admire the two of you a great deal! God bless your pea-pickin’ hearts! I just checked in and the Force is with you. Just Love.♥️

  5. Dear Jillian,

    You are a brave person to write such a raw story. I know revealing the details of Dempsey’s struggle must be hard. Yet, by sharing this you are also teaching your audience so many things–compassion for people going through cancer treatments being the most important. Maybe you can share your story to the powers that be who are powwowing about our health insurance. Take care and know I am thinking about you and your family. Tell Dempsey I am very, very impressed by him.

  6. Thanks for the update, Jillian. Sending you and Dempsey love, seeing you whole and healthy! Looking forward to an in-person visit when you return to Texas.
    Love
    Cyndy

  7. Thanks, Terry. We feel we’re being sustained by the prayers of our friends and family.

  8. Thanks, Emily – I’ll pass that along to Dempsey! I started writing these posts to keep friends and family updated, and I think they have been educational to many people. Certainly we’ve learned a lot. Of course, as I am sure you know as a writer, it’s primarily a coping mechanism.

    Regarding the health insurance legislation, Dempsey planned to retire this year, but he cannot enroll in the accompanying insurance until he is 60. So he will have a pre-existing condition and be in the over-50 group. Similarly, another family member who is presently insured under ACA has diabetes and is 50. I hope the Senators show greater compassion than the members of the House.

  9. Linda, my sister’s catch phrase with Dempsey is “Live long and prosper.” It’s how she signs off her texts to him!

    The treatment is barbaric. I handed over my big strong husband and they made him pretty sick – yet for now, it’s our best hope for his ultimate healing. We’re thinking of it as an investment in the future. And one day, there will be a better way.

  10. I wrote a long story of how, in past 2 months or so, I’ve had you often in my dreams. The day I tried to submit a reply to your blog was a vivid dream — upbeat and clearly positive — where you and I shared a closely bonded friendship having a good time. I was drawn to tell you, because upon awaking, I couldn’t help wondering if I wasn’t experiencing one of those views of how there are more dimensions of life than this one right in front of our noses today. I believe my soul is in touch with yours right now. And I want to comfort you with knowledge of how you are not walking alone.
    Be of faith that you are surrounded and guided. I may not reach out at every step, but I am sending my energy to you, nonetheless, always. God’s blessings to you both. Love, Susie

  11. Oh, Susie, what a wonderful message. Sorry I didn’t see it sooner. You have been such a part of my life these past 40 years. We’ve known each other through so much joy and so much grief. I love you with all my heart.

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