Kim’s Story

Kim was a few months out of law school and working at a firm in New York City, when she first began to get sick. In the beginning, she thought she just had food poisoning. But it wouldn’t go away. For several days, she continued to experience nausea and terrible stomach pain, and eventually took herself to the emergency room. At the time, she was more concerned about missing work than being sick; she figured she had a bad case of food poisoning or some kind of parasite.

But she didn’t get better and the doctors couldn’t figure it out. She remained ill and in pain with little relief for nearly a month. She left work early to lie in bed in her apartment. She was tired all the time and in a lot of pain. At one point, she returned to the emergency room and was admitted to the hospital for four days. She was becoming frightened – why couldn’t they figure it out? And she was mostly dealing with it alone; her fiancé was then in Boston and most of her friends in New York were young lawyers working long hours. The doctors performed seemingly innumerable tests, but found nothing. They guessed Crohn’s Disease at one point, but that just didn’t fit her symptoms.

Finally, they found a large tumor in her colon. A biopsy proved the tumor to be malignant. It was December by then and Kim finally had a diagnosis: colon cancer. This was completely unexpected – something for which the doctors simply hadn’t looked in a 28 year old woman.

Kim was scheduled to have surgery almost immediately – the week before Christmas. They would remove the tumor and examine her to determine if the cancer had spread. She would spend a week recovering in the hospital, and would probably be there over Christmas. Her family came to New York for the surgery and planned to spend the holiday in the hospital.

No one expected the results of the surgery. The cancer had not originated in the colon, but in the appendix. Kim’s appendix was a mass of tumors, and small tumors covered the surfaces of several other organs. They hadn’t shown up on the CAT scan because they were very small, called “cancer seedlings.” Kim’s appendix and the large tumor in her colon were removed, but it was clear that Kim had a battle ahead.

One of the more frustrating issues Kim and her family faced was how little information there is about appendix cancer. Cancer of the appendix is an extremely rare form of the cancer, and Kim had a very rare type, even within appendix cancer. Kim’s the kind of person who gets to the bottom of things, makes the most of available resources. She maximizes the utility of tools like the internet, the library, and local and national newspapers. In law school, she thoroughly researched classes and professors and jobs; found out about obscure opportunities, scholarships and study abroad programs; knew about community events and concerts and the best restaurants in town. But she could not find information about the form of cancer attacking her body. It seemed there were very few cases, very little data, and very few studies about Kim’s cancer.

Not long after the surgery, Kim began chemotherapy. She left her job to stay with her parents in Connecticut. However, she traveled to Memorial Sloan Kettering Hospital in New York every other week. On alternate Tuesdays, she sat in the hospital while the medication entered her body through a metaport buried just below her skin under her collar bone. The next few days she would spend in her apartment in New York carrying an IV bag in a fanny pack. Then back to the hospital to remove the IV. Eventually her family members and fiancé learned how to remove the line so that Kim could come back to Connecticut or Boston sooner without having to spend several days in New York.

After chemo, she felt overwhelming fatigue.  She was extremely sensitive to cold and her taste buds were altered. Worse than anything, there was no way of knowing whether the chemo was effective. The tumors were too small for a CAT scan to reveal. Kim never complained.

Instead, she worked. She worked on cancer the way most of us work in our professions, only Kim spent many more than 40 hours a week on her job. Exhausted by the side effects of chemo, she nonetheless spent her days researching treatment options, calling doctors, paying endless medical bills, and fighting with the insurance company. She learned about cancer and nutrition, giving up sugar entirely. She read everything she could get her hands on to educate her about the disease.

She ultimately learned about "cytoreductive" or “debulking” surgery performed by only seven or eight doctors in the US. The goal of cytoreductive surgery is to remove all visible cancerous tumors. To destroy microscopic cancer cells left behind and to prevent them from later growing into new cancerous tumors in the abdomen, the surgery is often followed by treatment with a heated chemotherapy bath applied directly to the abdominal cavity. Residual tumor cells that may persist after the surgery are hopefully destroyed by the chemotherapy.

The surgery would cost approximately $100,000 before the drugs or the recovery, and insurance may or may not cover it. But it was her best chance for a cure. She began trying to contact and interview doctors.

Can you imagine being told that you have one good chance at a cure, but unfortunately the doctor can’t see you for another two weeks? Can you imagine your oncologist and your surgeon debating how long you should stay on chemo before a major operation or which drugs could be beneficial or even harmful if you take them before the surgery or being unable to get in touch with these doctors for days or weeks? Can you imagine trying to convince your insurance company that your life is worth the money?

Finally, Kim had a surgeon and date for the surgery. She would travel to Washington, D.C. where Dr. Paul Sugarbaker performs cytoreductive surgery, which he developed. On Thursday, June 8, Kim would undergo an operation estimated to last 8 – 12 hours. Hospital recovery would last approximately 3 weeks. She would then return home where she would continue to heal for several more months.

When the doctor spoke to Kim’s family after the surgery, they felt they were hearing good news for the first time in six months. It had gone incredibly well. The surgeon had not removed any organs that would affect Kim’s quality of life. Of course there were more tests, but it looked like the cancer had subsided.

For the next few weeks, Kim and her family lived in the Washington Hospital Center in D.C. Two days after the surgery, she walked a few steps. Within the week, she walked laps around the hospital wing twice a day. After two weeks, a few days before her 29th birthday, she was finally allowed to go home.

Kim still has a long road ahead. She is continuing to heal, but it will be a while before her body is fully back to normal. She has two to three more months of chemo, traveling back and forth to New York and living without a job, and another six months to a year of expensive medication.

But if she weathers it all as well as she has weathered this past year, she should be in perfect health in no time.

For more about appendix cancer and cytoreductive surgery, see
http://www.surgicaloncology.com/
http://www.appendix-cancer.com/
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=cmed.section.24834
http://www.oncolink.com/resources/article.cfm?c=3&s=8&ss=23&id=11626&month=03&year=2005.