Three: Research Blitz, April 2009

Amtrak to Davis July, 2008

That first consultation gave way to research. This meant books for me, every one that was available in the Alameda County Library system, and medical journals for Dan, the technical mind. I had been a graduate student recently enough that I could be efficient and systematic in going through a swath of information.

More bad news resulted from our research: possible loss of sexual function with trying to connect the large colon down to the rectal area after having taken the rectum out. In pictures, the large colon looked like a vacuum cleaner tube, and it was easy to imagine stretching it down to the bottom of the body because this tube could expand. Even without trying to reconnect it, there would still be loss of bowel function. The bottom line was the reading of the carcinoma by the pathologist. We needed another reading or two.

Ironically, one of the books I got from the library during this frenzy outlined two possible methods of research: one, do things one step at a time; two, do everything at once. The reasons behind the two had to do with time. How much time a patient has is everything because when you find out you have cancer it’s urgent. How can it not be? You respond according to the doctor’s own response to your diagnosis. If you fall down one day in a grocery store, like one member of our support group did, your doctor tells you have stage three colon cancer and you need surgery immediately, the next day. In his case, he wandered around for a couple of days in disbelief before taking it seriously.

For someone like Dan, with stage one, early rectal cancer, there was still urgency, partly because of the word “cancer,” and its serious import. Mostly this urgency was due to our trip to England. If we acted quickly, made the right decisions, and Dan had the surgery and recovered in time, we figured we could still go on our trip at the end of May. We had already re-booked our tickets once because of his daughter’s college graduation, which we found about after-the-fact, incurring a penalty. Besides, rescheduling or canceling the trip would mean the cancer had won something from us. Our mental state and energy revolved around keeping the trip, period. As long as we focused on that as our goal, we were in a research blitz.

By the time I saw these two methods outlined in the book, we had already done most of the work, studied the jargon, knew the terrain of the polyp, how the carcinoma looked, its tree-like growth emanating, the parts of the large colon, the nature of the lymph nodes in that area and how they move out and down, different, for instance, than the breast area, which has lymph nodes that move erratically in any direction.

I called Judy Schwartz, old family friend and daughter of Joanne, who in her 80s had been operated on by the same Dr. Dixon a few years earlier. My mother knew Joanne for 50 years. They met in the library program at Columbia when they were young. Judy spoke highly of Dixon, who, she said, treated her mother as if she was his only patient. Surprised to hear that the doctor went to lunch in the middle of our first consultation, she said, “I guess he’s busier now.”

My reading revealed the relationship between doctor and patient, and how today’s model has moved away from the paternalistic one, where the doctor instructs the patient, and the patient listens. Instead, the patient should aspire to gain knowledge, ask questions, and work towards a two-way relationship with his doctor. A couple of books even provided questions to ask and how to create this healthy interchange. The reality, of course, must vary in the doctor’s styles—who they are as people, which model they were educated in, and what they were interested in now.

The surgery that appealed to me more was the resection. They used metal clamps now in resection, which we learned about from Dixon; much improved from the plastic ones, they enabled the rectum to be functional once the temporary stoma, in a second surgery, was "taken down".

What became clear over the weeks was that because the site of the polyp was so low in the rectum, the resection would not only be difficult, but there wouldn’t be a guarantee that it wouldn’t leak. This could cause an emergency visit to the hospital room during the first few weeks. Or the procedure could not be successful, causing the patient to permanently use a diaper. During one trip to the local grocery store I found myself wandering past the adult diaper section and the reality set in. Why would anyone take a chance and have to wear one?

What struck me, too, was the barbaric nature of these operations, reminiscent of removing a woman’s uterus, the standard treatment for many years. These were strategies for not dealing with the cancer, for evading it. My concern was that radical surgery would alter Dan’s life too greatly. Worse, if we did nothing and the cancer developed, then we would have a bigger, more life-threatening problem on our hands.

Dan did not say he canceled the plane tickets and I did not ask. Dixon said he wouldn’t want to wait until June to do surgery, that if we were going to do it we should do it sooner. I thought what they needed at Kaiser was a health-care coordinator to make all the related areas flow together smoothly, someone who is a people person, friendly, with good energy, and with professionalism.

Then, one night, Dan and I were read a book together (literally together, sitting on the bed, turning pages) on a diet which balanced acidic foods with “normal” foods. The book was from his co-worker. We laughed initially, saying the book was hokey, but the ideas made sense, incorporating whole, fresh foods, as well as a few bad ones, a realistic approach. The authors, a husband and wife, dictated to start with a cleanse and then eat whole vegetables and grains. They said they gave up sugar and sugary foods, which happened as a natural matter-of-course with this program. The problem with the book is that it made radical claims about the curative properties of the diet.

First-hand case studies represented success stories. The mistake here would be in thinking that the diet alone could work magic against cancer. Doctors in hospitals aren’t excited about the idea that supplements or diet alone can make cancer go away. The book, however, did make us think more about our diets. I had cut out animal products completely the previous fall, to great success, but sugar was my addiction and my enemy. Dan ate reasonably well also, and was thinner. I was worried about him getting any thinner and dissipating.

I found an ad for a teaching position in Micronesia, and we joked about moving off the map, changing our names, and forgetting about the diagnosis. It was early stage, the polyp not verging beyond the colon wall, only touching it, so we had disbelief that any of the lymph nodes, carriers on the bloodstream highway, could have the cancer. No one had yet told us that denial was healthy, necessary in order for one to function. We thought denial and disbelief were counter to our purpose, unhelpful enemies, so we joked about moving far away. I kept to task. Dan wavered from denial and depression to being motivated to find out more about his condition. In some ways, he was more easy going, less rigid. More distant yet closer. When you don’t know how much time you have left with a person, everything makes more sense. Just like when we first met, when distance melted away.

One evening, I came home to find Dan sitting on the couch staring at the computer screen. This was not an unusual activity, but he didn’t seem to be doing anything. He had found a study pointing to impotency as a result of either surgery because it disturbed the nerve endings in the anus, which communicated with the brain. Dan looked like someone who had been shot, eyes dull, shoulders forward, staring at the computer screen.

Normally full of reassurance, I could say nothing except, “let’s find out more.”

“That’s enough research for now,” he said.

A year earlier, we had sat in the same spot while my cat was given a lethal injection by the visiting vet. I had made the decision through her failing health. She probably had lymphoma, on top of the kidney condition, pancreatitis, and reoccurring fluid in her lungs, the latter which filled even her limbs in the end. Dan had said “she’s perfect.” I thought of this as we sat there on the same couch, without my cat this time, in silence, and in shock.