Personal Stories

Judi

In October 1998, just days into a new job at a comprehensive cancer center, I was introduced to colorectal cancer. I will never forget sitting in my boss's office, feeling grateful for a wonderful new job and excited to work. Had all been well, we would have been discussing recruitment strategies for a lung cancer study. Instead, we were looking at films of my husband's abdominal cavity.

"This is serious," my boss said, pointing to white spots on the area of the film that depicted my husband's liver. Cancer cells had traveled from a seven-inch rectosigmoid tumor to both lobes of his liver. So, it was stage IV colorectal cancer that had been causing Bob's mysterious bouts of diarrhea and occasional loss of bowel control over the past two months. He had had colitis as a young man, which increases the risk of colorectal cancer. Despite this history and the recent symptoms, though, his primary care doctor had not ordered a colonoscopy. He had alternated between specimen checks for parasites and prescriptions for various antidiarrheal and antibiotic medications. When Bob's condition worsened, the colonoscopy that was ordered couldn't be done because the tumor was obstructing the sigmoid colon.

My boss at that time, a medical oncologist with expertise in colorectal cancer, believed that the best chance for short-term, and possibly long-term, survival would require removal of the tumor and insertion of a liver pump, enabling ongoing chemotherapy not only systemically but also by hepatic arterial infusion (HAI).

Roles changed quickly. Working for my new boss had meant taking an $8,000 pay cut that my husband planned to offset by working overtime. With my husband in the hospital having serious surgery, I was forced to leave my hospital-based research position for a higher-paying position in a small company that fulfills government contracts. My former boss was now my husband's physician, and I was counting on him to prolong and save my husband's life.

While my husband went from a healthy-looking 205 pounds to about 175 pounds, weak and hurting from an incision that ran chest to groin, I worked two jobs while continuing to take RN courses to bolster my master's degree in public health. The stress of caring for my husband and worrying whether he would live, combined with the strain of overwork, led to my first-ever, weeklong hospitalization for severe asthma. That was nothing compared to what Bob was experiencing.

The challenge of recovering from major surgery and being bombed with chemotherapy systemically and via the liver pump severely sickened Bob. Jaundiced and emaciated, he had problems with vision and balance, very low blood pressure, chronic diarrhea, impaired bowel control, overall weakness, and depression. The depression was unnerving, and when medication, tender loving care, and empathy didn't work, I confess that I yelled. "If you die without putting up a fight," I swore, "I will find you and drag you back here." Did I mean to be cruel? No, I was desperate. I was (and still am) furious at cancer, science, myself for not having forced Bob to get a colonoscopy earlier, Bob for not having gotten tested when I asked him to, and anything that caved in around me.

I wondered if Bob would survive the first year, which he did, rebounding with energy and determination. People would see him and believe he was cured. People need to believe you can beat cancer so they can have hope, but we know that Bob's cancer remains in his liver and lungs, growing slowly, as he nears the two-year survival mark.

Bob's chief weapon against the disease, hepatic arterial infusion, can no longer be used because he has developed a condition known as cholangitis, caused by months of chemotherapy directly to the liver. His liver metastases may be inactive for now, but for how long? Also, as is a frequent occurrence with stage IV colorectal cancer, he now has small metastases to both lungs. One of those mets, lying in the chest wall, defies surgery. We recently tried to stun those mets with irinotecan, but Bob was only able to tolerate two of the four recommended doses. Two doses led to painful pericarditis, very low blood pressure, temporary hair loss, and bacteremia, which was serious enough for two hospitalizations.

We are on the battlefield every day, involved in a war we would rather not fight. Because we truly hate this enemy, we are tireless in our search for new strategies and treatments. So much is happening with new interventions that no matter how much you believe in your doctor, it is wise to get at least two more opinions, and in more than one oncologic specialty.

From the start, we insisted on care at a comprehensive cancer center. We have added two radiation oncologists to the team (from a different cancer center in the community), and we will also seek input from an expert at Memorial Sloan Kettering in New York. Our hope is that our local oncologist will synthesize all the recommendations and support a treatment plan that combines more than one therapy, hopefully low-dose chemotherapy with an anti-angiogenesis component, along with radiation therapy. Surgery, of course, would be our first choice, but once cancer starts to spread, it's just not practical.

Having watched Bob suffer for nearly two years, I now understand why people opt to discontinue treatment. I have told Bob that if he ever wants to stop fighting, he has my love and support. I am grateful that Bob is still in the fighting mode. Now is a critical time to define a new strategy because the right combination of interventions may buy him more months and years. Even if it doesn‘t, I know that his oncologic team has already given him two years of life that he wouldn't have had without their knowledge and skill.

It is important to understand that cancer's impact on emotional health is almost as severe as its impact on physical health. You must do whatever you can to get support. Reach out to family, friends, coworkers, and hospital social workers, whose services are usually free of charge. For me, a few close friends, ACOR's colon cancer listserve, and, believe it or not, swimming laps like there was no tomorrow have been a mainstay. I have been empowered and energized by ACOR's online "troops." Although I didn't meet my internet family by choice, I am forever bonded to them by experience, shared knowledge and hope, and their phenomenal community spirit.

Our journey isn't over. Although I believe that some day there will be a cure, I am grateful for interventions that extend and contribute to Bob's quality of life. I have learned a lot about colorectal cancer, and although I am no longer in denial about my husband's prognosis, I choose to remain hopeful about his future.

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