My Journey As Caregiver in Colon Cancer Begins

Caregiving for a spouse with cancer is a difficult road. Judi Ebbert tells her story as a caregiver to her husband, terminally ill with advanced colon cancer

Health Writer
Bob Simons on Cadillac Mountain in Acadia National Park, Maine, enjoying a trip just weeks before being diagnosed with stage 4 colorectal cancer.
Judi Ebbert

Life was at its best and looked like it would be that way for a long, long time.

I’d just accepted a new job as project manager of a lung cancer study at a leading cancer center. I was precisely where I wanted to be, and so was my husband, Bob, who was working on a degree that would enable him to counsel troubled youth. We were weeks out of a wonderful trip to Bar Harbor, Maine, and all seemed right with the world.

We were so content with life’s vibe that when he started having symptoms of a bowel disorder, we felt comfortable relying on a primary care doctor’s conservative approach to solve the problem. When nothing worked and my husband expressed fear of cancer, I insisted that was impossible. Denial is like a mirage — the illusion of water in the desert or a rescuer in the empty wilderness. The persistence of symptoms left one option: a colonoscopy, which was scheduled at a local hospital.

Waiting for “the test” and what it would reveal tested our patience and calm. Indeed, it spun off the first significant emotional response — anxiety and fear that precipitated a series of “what ifs.”

What if it really is colon cancer? What if it’s incurable? What if we hadn’t waited so long? What if I had read up on risk factors, and we’d gotten the right intervention earlier? What if…? But you both want so much for it to be normal that you start to believe it absolutely will be fine because then life can go on as before and you can return to that wonderful state of complacence — even optimism.

Reality often counters optimism, as on the day of the test, when the surgeon said that a mass in the lower sigmoid colon made it impossible to complete the colonoscopy. And the next test? Waiting for results of a biopsy of a snippet of the mass — hanging on for several days to learn whether it was malignant, and if so, what type of cells were involved. That meant prolonged anxiety and fear and more and more “what ifs” that were impossible to answer.

Next, the doctor told us that even more tests were needed: a computed tomography (CT) and positron emission tomography (PET). Then there would be numerous blood tests to show what values may be in and out of range.

The test results came in. And like a lightning strike, the news that it was an adenocarcinoma, a malignancy that began with a polyp that mutated over the years, hit us hard and fast. We knew one thing: he would be treated by the best oncologists at the center where I had just started working. But we were hit with new questions: Why him? Why us?

What lies ahead?

The treatment continuum

The order of treatment for colon cancer usually starts with surgery to remove all or most of the cancer. It’s an invasive procedure that carries a lot of risks, among them bleeding, infection at the surgery site, and blood clots in the legs.

Some medical oncologists will give chemotherapy before the surgery to kill as many cancer cells as possible to increase chances for a better long-term outcome. That was not the case in our situation. We got two treatment opinions with little time for consults because my husband’s tumor was causing a bowel obstruction.

My husband wanted to compare two surgeons, one at the leading cancer center and the other at a community hospital near us. The surgeon at the community hospital was a general surgeon, and he talked about the possibility of starting surgery and, if the cancer was too widespread, closing him up without intervening. I didn’t like what I was hearing, and I must emphasize that anyone who is having surgery for colon cancer needs to use an oncologic surgeon who specializes in colon cancer. The community hospital approach made my blood run cold, and after we left, I told my husband I wouldn’t stand by and see him have such serious surgery in this hospital.

He agreed, and so it began, major surgery by an oncology surgeon who specialized in colon cancer surgery. My boss at that time (a renowned medical oncologist) handed us paperwork to read and sign regarding implantation of a device to provide hepatic arterial infusion (HAI). In other words, a steel-like circular device about 3-4 inches in diameter and about an inch deep, would be implanted during surgery and have its own port, into which chemo would periodically be added for direct delivery to Bob’s liver.

“I came up with an amazing solution. My ex-husband, a very nice guy who was also named Bob, was retired, so I offered to pay him to take my husband to his chemotherapy appointments.”

After my husband healed, which took several weeks, he began systemic chemotherapy with 5-fluorouricil and leucovorin, as well as chemotherapy via the HAI device.

Chemo drugs are cytotoxic. This means they are designed to kill cells by poisoning them. The problem is that cytotoxic drugs don’t differentiate between healthy cells and cancer cells, and so all cells are wiped out. That takes a heavy toll in terms of side effects like hair loss, fatigue, nausea, vomiting, and severe diarrhea.

This last symptom was so intense that my husband was prescribed octreotide, known as Sandostatin, a drug that mimics the natural hormone somatostatin. And what does somatostatin do? It’s a hormone produced mainly in the nervous and digestive systems. Among its many jobs, it inhibits the secretion of other hormones, activity in the gastrointestinal tract and rapid reproduction of cells.

But it never really helped with his chronic diarrhea, yet my husband was afraid that without the drug, the diarrhea would worsen, so he continued taking it throughout his treatment.

Transporting Bob to chemotherapy was my top priority, but doing it myself as a more than full-time worker was not easy. His relatives all had jobs and lived some distance away, so I had to be creative. I came up with an amazing solution.

My ex-husband, a very nice guy who was also named Bob, was retired, so I offered to pay him to take my husband to his chemotherapy appointments. He happily agreed and would accept nothing more than money to cover gasoline. That was certainly a new spin on extended family, and it worked quite well. The two became fast friends, and I was relieved to know that my husband was in very responsible company.

The bitter irony of cytotoxic drugs is that at first they work, and people with cancer and their loved ones, even when the cancer is advanced, get incredibly excited when scans reveal dead, calcified tumors. No one goes out of their way to tell you this is temporary, and I’m not sure if that’s a good thing.

I would ask the doctor how long Bob’s remaining time could be, and I was always told months to years. That’s a hard uncertainty to define let alone handle. You’re essentially being told death is ahead, but the timing isn’t known, which is true for all of us who don’t have a terminal disease.

I’ve asked several oncologists if they make clear to the patient and family that their disease will ultimately result in loss of life. They said while they tell patients they could live for months to years, at the same time they want to instill hope, and I get that. My husband’s remission lasted many months, until surveillance scans revealed new tumors on his liver.

About one year into the disease, my husband was still able to work when he could thanks to his compassionate employer. With the return of new tumors concentrated in his liver, it was time to start chemotherapy again, and this time oxaliplatin (Eloxatin) would be included in the regimen.

Oxaliplatin is also a cytotoxic drug with the additional side effect of neuropathy, or shooting pain in the extremities. I will never forget the first dose. We were driving away from the cancer center and my husband asked me to pull over and he barely got the door open before vomiting what looked like quarts of milky water.

Within a couple of days, he was bald. It was rough, but it was what had to be done to achieve the result we so much needed: scans of dead calcified tumors. Also known as remission.

Financial issues, ‘chemoresistance factor’

Increasingly sicker, my husband reached the point where he could only work part-time some of the time, and it was time for him to declare bankruptcy.

Cancer is the number one reason for bankruptcy. Even if medical care is covered by insurance, which his was, we were a two-income household and unable to afford expenses with just one half of the team able to work. We were taken by surprise with no savings to cover more than short-term costs of living. People who do have savings to help cover expenses can quickly drain their funds before finally having to declare bankruptcy.

The second remission was shorter than the first. Cancer cells are “smart” in that they have the ability to acquire immunity to cancer drugs. It’s called chemoresistance, and after several regimens of various chemotherapies, the strongest cancer cells “learn” how to survive the onslaught of poisons.

If someone could figure that one out and circumvent the process, a lot of lives could be saved. Clinical researchers are making progress in that direction, with biologic therapies that target certain points in the life cycle of cancer cells, while bypassing healthy normal cells. But clinical research is a very slow process. We can only hope that some day people with advanced cancers will live a lot longer and more comfortably with therapies that outsmart cancer cells and make little to no impact on healthy cells.

Each treatment remission was shorter than the preceding. And with extended treatment there are serious side effects. One day he fell, likely because his blood pressure was low. His bones were weak. He complained of terrible pain and I took him to the hospital, where they diagnosed a hip fracture. They proceeded with surgery and it was successful.

There are only so many chemotherapy drugs to try. After a while, usually three or four different regimens, the chemoresistance factor rears its ugly head. When there is nothing left that can kill cancer cells or prevent them from reproducing, the bitter truth hits hard. There’s no asymptomatic remission to lull one into complacency and denial of imminent passing.

I will always remember the day the chemotherapy infusion team, who had been with him from the beginning, bade him a final farewell. As he was wheeled out of the infusion center, several treatment team members were in tears. All knew they were saying goodbye to yet another warrior to whom they’d grown attached but for whom they had no more weapons. He cried and so did they, each hugging him as we left for home and the next phase in the progression of terminal cancer.

Read the second and final part of Judi's story, A Caregiver Says Goodbye to Her Husband With Advanced Colon Cancer, to learn how her husband's health failed.