Fourteen: Limbo

Pete, on top, with Paul, Dan, and John, 1987

Once the original surgery date was not longer desired, because we had to set up a new date with Dr. Varma, we found that Dixon had trouble coming up with a date that worked for us. I wanted it during my break after the spring semester ended and before the summer one began. It was hard enough to focus on teaching with the cancer diagnosis and research, let alone imagining his surgery and recovery period occurring during teaching, especially in the accelerated summer session.

Weeks went by. My physical therapist, treating my shoulder, saw it worsen rather than improve from the tension of waiting for a surgery date. Plus, my school break was going by and we were not in England. Instead, Dan was working a normal schedule and I sat home, distracting myself by making movies on iMovie, mostly composed of stills. Swimming, normally an outlet for tension was an activity I couldn’t perform because of the shoulder impingement. After all, excessive swimming without caring for the muscles had caused it to begin with. Walking, even as much as I walked and at the fast pace I took, did not have the same benefits. My teeth hurt from gritting them. My P.T. massaged my arm and attached my head to the neck-lengthening machine, where a bar is placed under the chin and the machine pulls the bead back slowly, elongating the neck. This created some relief for a day, but after that I was back to the usual tension.

It wasn’t so much the trip to England as what losing it symbolized, that this was serious, an all-points bulletin from us, admitting so. It meant the loss of normal life, taken-for-granted.

May 11^th was another would-be operation date that we cancelled for more doctor appointments. It wasn’t like we were putting it off for it’s own sake, although at times it seemed like it. Rather, it was because we wanted to make an informed decision.

The morning after he canceled it, Dan was a wreck. Neither of us had slept well. He hadn’t called Dixon, felt mixed up about everything, and said the appointment with Dr. Varma, with its information about the re-section, threw a loop into his decision to do the colostomy bag option. I felt like a mouse trapped in a cage, hot, itchy, and wanting to get out. How should I convince him he must do something? This was no different than anything else, in a sense, I thought, his usual behavior rearing its head, yet it was a life-or-death situation. Back to denial.

He sat up in bed. “I was walking home. My body feels perfect, I feel in good health,” he claimed.

“Yes. And if you had stage three cancer you would be feeling symptoms, but you don’t, so you’re not,” I retorted,

I suggested we talk to the two people whose numbers Marianne from the poetry group gave me, but he didn’t go for that, didn’t say anything. I could always call them myself, I thought.

On my way back from school that afternoon, my ticket wouldn’t work at the Lake Merritt BART Station, where I got on. I went to the station agent, who instructed me to go to the ticket office.

The person at the ticket office said, “We don’t do that.”

“But the agent told me I could,” I countered.

She then fed it through her machine. “Oh, you have an invalid ticket. Sure. Give me the 25 cents.”

While I was procuring the coins from my change purse, I asked, “I’m just wondering—what should I have said to you?”

“That you have an invalid ticket,” she said, matter-of-factly, not with malice, but as if this was a normal question.

The “no” was something I could not handle. I needed to hear “yes,” the positive, all the time.

That evening, Dan said, “This whole thing is unreal.”

“The beginning felt like a car wreck, and here it is almost June. We should be in York today,” I said.

The weird thing was that I felt weightless, strange, something I’ve never felt before. Real limbo. I needed to revise my short stories I had already gotten feedback on, but it was impossible, something about that hump, now, which was formidable.

I found out about the support group at UCSF, in an email from the woman at the Colon Cancer Alliance, sponsored by the “Wellness Community,” whatever that meant. It met on the second the fourth Thursdays at 6pm. I would go, regardless of whether Dan went or not.

Our first time at the UCSF cancer support group. Vittorio, the facilitator, said I was carrying tension for both Dan and myself. Dan was fine at that point, which was good, since he would be the one under the knife. But I was so tense, I was in tears most of the time. If we were both stressed out, it would be worse, Vittorio said. Everything he said made sense. I did feel like I was carrying too much on my shoulders.

It was true that Dan was putting the surgery date out of his mind, but I hoped he could be present during the operation. I tried not to put my stress onto him, but it was hard.

What Dan and I both expressed in the group was our lack of control about scheduling the surgery and appointments at Kaiser in general.

Vittorio said, “You can’t change how much control you have over things, but you can change your feelings,” blessing us, making a pronouncement and freeing us from our bind.

He also encouraged me to write, even if it was tiny bits, facts—it didn’t have to be creative even.

I had one more week before school started, and wanted to make the most of it, in spite of the fact that I wasn’t doing anything. I would get ideas for beginnings of stories or titles, but then didn’t remember them because I didn’t write them down. I didn’t have much prep work to do because this class was a repeat of others I had taught, though I always do some modification.

We visited with my cousin Donna and her husband Carsten, here from Denmark, at my mother’s place. People say we are most alike of all my cousins, and we do see eye-to-eye in a lot of matters—are sympatico with each other. They had been included in the email updates Dan had sent out to family and friends, and Donna had written back some helpful advice or questions. But now, I couldn’t believe what she was saying.

“You’re going through an anger phase,” Donna pronounced, sitting on my mother’s couch.

“I don’t think I’m going through a phase, and I am not angry,” I responded, frustrated and stressed out.

I was angry now. Why do others tell you how you are feeling? I had also gotten angry at her when she first asked what I was doing, but then interrupted me when I was answering.

The annoying thing about Dr. Dixon was that he did not treat Dan as if he was his only patient. I exaggerate, but surely, even with the Doctor’s busy schedule, he could have referred to Dan’s email or his own notes to see that June 12^th was not a good surgery date. Part of this torturous waiting process was the way we lost a good surgery date, at the end of my semester, and then succumbed to Dixon’s saying he was trying to “trade” with another surgeon for time in the O.R. (operating room.) June 12^th wouldn’t work because it was the day before his daughter Becca’s college graduation.

The most frustrating moment in trying to schedule surgery was the night of June 5^th, when Dan and I were coming back from our third support group at UCSF, when we were still hoping for something the week of the 15^th.

We hopped on the 38 Geary bus at Divisadero. It wound its way downtown, and there, we got off at New Montgomery Street outside the Palace Hotel, and went down into the bowels of the Bart station. We passed through the fare gate and walked swiftly down the escalator to the train platform. Thirteen minutes. The train came only every 20 minutes at night and there was no direct Richmond train.

Dan’s phone rang.

“It’s Dixon,” he said to me, covering the mouthpiece.

Dan said to Dixon, “Uh, okay—well, let us know.”

I pulsated, listening to this interchange. “What’s he saying?” I asked.

“I think Laurel wants to talk to you,” Dan said to Dixon. And he handed over his phone to me.

“Hi there,” I said, stunned at having to suddenly talk to the doctor.

Dixon said, “I wasn’t able to get time in the O.R. the week of the 15^th. We’ll have to go with the original date, the 24^th.”

I couldn’t speak. This was unacceptable.

“But I’ll let you know if anything turns up,” he says hopefully.

I catch my breath. “Thanks for trying.” attempting to sound calm.

I don’t know what Dixon went through to try and switch dates, how much time and energy. I don’t know the world of doctors, and their scheduling process. I thought back to our first meeting with Virgie, Dixon’s assistant, and how she told us he did his own scheduling. I thought back, too, to when he had disappeared during the first appointment, and I had the nurse I found look for his schedule book. We didn’t understand the procedure, clearly. When I spoke to Virgie on the phone, she said Dan should talk to Dr. Dixon about the next appointment. What was her role? She was his assistant, not secretary, so she helped him with his patients, not his paperwork? Did he do all his own paperwork? I still did not understand the roles or procedures.

Another area of confusion was clarified by my mother, who had worked in medical records departments doing coding. When I called UCSF about the outside consultation, the desk person there, in listing the documents to bring, included doctor’s notes. I called Virgie and asked her for a copy of Dixon’s notes. She said she’d leave a message for him. When I next talked to Virgie, she said Dixon had not done it yet. No notes? But we had three meetings with him and he had done a “digital” exam on Dan. My mother responded to my complaint, saying it was not unusual, but that he was obligated to keep records of what he found. Finally, Virgie called me, saying I should pick up the notes from surgery.

When I dropped by to pick up the doctor’s notes, all I had to do was give me name at the surgery desk and Virgie popped out from the back with the envelope. I wishes everything was as simple as this moment. I wanted to look at it then and there, so walked over to the lobby, just down the hall, and sat down on one of the couches.

Dixon wrote: “Discussed options extensively with patient and wife. Recommend surgical resection which would be LAR (ultralow) or APR. Would not recommend local excision or chemo/XRT given higher risk of LNs mets with these path features and patients otherwise excellent state of health. Discussed pros/cons of APR vs. Ultralow LAR. Patient enjoys hiking and the outdoors and it is unclear if LAR would offer best quality of life. Discussed risks, benefits of surgery including chance that surgery would find no additional cancer. Patient wants more information at this point: although initial scheduled surgery 4/27 with me, I have since learned he has cancelled surgery.” Then he lists the plan, consisting of second opinions with Dr. Thomas and Dr. Goetz and possibly a surgeon at UC. He says the CT scan shows liver lesions (turned out to be cysts) and will need an ultrasound. He says he will ask for a second pathology report to confirm the poorly differentiation and the mucinous quality.

What struck me about his report is the doctor’s medical language, first of all, the passive take on how the 4/27 surgery was cancelled: “I have since learned.” He had known about it, and was actively involved in discussing surgery dates.

The assumption of me being Dan’s wife was not an unusual one, since we were older, and many people just assumed we are married, for some reason, that we’ve been together for a long time rather than just a few years. Clearly they didn’t understand our commitment. Maybe, too, they thought, why else would she go through this, if they weren’t in an established relationship sanctioned by marriage?

The fact of my not being his wife would have legal relevance, even if it did not seem significant to us at the time. Later, for instance, when Dan was recovering from surgery at home, Denise, the ostomy nurse, wouldn’t have a conversation with me on the phone because I was not Dan’s wife. We had forgotten to sign a release form to make this possible, allowing me to obtain information for him on my own, something I had been doing all along, as no one questioned our relationship. Indeed, our legal relationship status would become an important thread later, with Dan and me.

One of the key pieces of information in Dixon’s notes was the emention of the “mucin.” This meant that the polyp was a more active type, as the word “villous” in all the other reports also pointed to a more dangerous type of polyp. It looked like a sprouting tree in shape, rather than another type of polyp, which was more round and contained looking. The other thing about the report was that this half a page of small typed print was all Dan’s situation amounted to, from a medical standpoint. It was strange to see it, so bare and sterile.

Thirteen: Preparing for Surgery

Dickinsons at the Smith River

Now that we knew surgery was imminent, we started preparing for it. My own list included getting an audio tape from Kaiser that I had read about on their website, called “Preparing for Surgery.” Dan needed to get the disability form to his work, but only when we had a firm surgery date, so that paperwork hung over us. He would need to complete his medical directive, which he was putting off, as if doing so would put off the surgery. He wanted to add me to his checking account so that in case anything happened to him, I could have access to his funds there. I wanted to get a robe for him, so that when he came home for recuperation he would be comfortable. We had to buy many bags of cat litter because afterwards, he wouldn’t be able to lift anything for a while. I also put on my list completing my own medical directive. Dan was supposed to give me the forms for his work for the doctor to sign upon discharge from the hospital.

Dan proclaimed himself “at peace” with the idea of surgery. I was glad for that. But I had my own experience with it, more like a roller coaster. The weird slowing of time which we experienced the first few weeks had gone, and time was more its usual self now. We were out of our skins and minds, overwhelmed, and in disbelief. Then denial. These were similar colors in a spectrum. I went back and forth between the two, even after canceling the bookings for our trip, researching online to see if anything was still available, thinking, hey, let’s go. It was hard to accept, not going on the trip. My mind also went in the direction of how it was too bad Dan didn’t have a PPO health plan so he could choose Dr. Varma and UCSF, pay the 20% or whatever it was, and try the resection, since she offered it.

I couldn’t reconcile my feelings about Dr. Dixon with the idea of anyone operating on Dan. If Dr. Goetz was doing it, I would have a warmer feeling. Yes it was a technical procedure, was the same, no matter who did it., but my wanting extended in all directions, with all nuances. I wanted to protect him. I was thankful that Pete, Dan’s brother would be with us, which would make it possible that Dan had as much attention as he needed and deserved at the hospital.

l dreaded dysfunction, the challenges ahead. I told him so many times how I was there, I loved him, how I wanted to be here and no where else, and how I would always be with him. 

Twelve: Nurse Denise Nakatani at Kaiser Oakland, May 5th, 2009

Dan 1980s

The appointment with the ostomy nurse, Denise, was surprisingly straight forward. We went again to the surgery department and didn’t wait long to be ushered in by someone to a room before the nurse appeared. This was show-and-tell.

An ostomy nurse deals specifically with people who have colostomies. She is on intimate terms with the stoma and bag. The ostomy supply companies keep her flush with materials.

Denise was an Asian American woman with a full hair cut short and a no nonsense way of talking. She procured a sample bag from one of the cupboards, where they were stashed, holding it up.

“Ten pouches can last a month, and you pay at most 20% depending on your plan, like a medication prescription,” she instructed, pointing at the bag. “They deliver them to your home in three days, depending on how quickly the order is placed.”

It was important to keep the stoma clean, and the skin around it, which was covered by a flange with adhesive.

“What about the irrigation option?” Dan asked.

Denise explained that it took one to two hours, and doing it at the same time every day was important. It was essentially giving yourself an enema. She said it was best to do it from the start if one was interested. The body, then, would be used to it.

Dan hung on her every word.

This new information didn’t make sense to me. I wondered why couldn’t one just start doing it later if the bag didn’t work out, but let Dan and Denise go through the show-and-tell.

She talked about the advantage of the two piece, in that it was easier to see and, therefore, learn, how to change the bag, which you needed to do every three to four days in the beginning. The flange was a circle-shape that went around the stoma, the opening. You first put the flange against the skin—it had built-in adhesive—and pressed for a while, letting the warmth of your touch help it stick to the skin. Then you attached the bag to the flange, snapping it on to the rigid circle. Then you were in business.

The one-piece, she said, was something you could graduate to, after adapting to the two piece. “It’s easier for most people to use the two piece at first.”

The one piece sounded smoother and less bulky, even if it was more difficult.

“It’s important to look at the skin,” she said. “You want healthy skin, since it’s going to be covered up all the time.”

“Uh huh,” Dan said, focused on her.

“You will have the same bowel movements you’ve always had. Your stools will still be firm because of the journey through the colon. Remember, you’re not having the colon removed, so no loss of liquid,” she said.

She talked about how heat affects the skin, and that one may need to change the bag more often. The paste and the powder are for skin problems, meant to keep the skin under the flange dry.

Dan asked, “Where do they put the stoma? How do I wear my pants?”

I had read about some problems around this. Sometimes they surgeon put the stoma too high or too low, and the pant line cut off the flow, or caused the contents of the bag to bunch up at the top, and “pancake.”

“It should be in a comfortable place for you. I would have to wear looser pants if I had one.” She patted her stomach.

Denise answered every one of Dan’s questions. This was different from any of the other appointments, where varying degrees of withholding information was standard, and we didn’t know the end point, let alone what questions to answer aside from what had come up in our research and what the previous appointment or doctor has alluded to. Denise seemed to see her job as making things as clear as she could. The appointment felt like we actually accomplished something.

Eleven: Patient and Partner

Tennessee Valley Cove May 16, 2009

Dan and I were like two fish swimming in the same river. We had the same information, but reacted to it differently. He was the patient, I was not. During all the research, the facts and my opinion were equally welcome and valued by him. It was his body, but he included me fully in the process leading up to the final decision, which was his alone. This togetherness, or blending of the patient is a remarkable stage, or experience, because in many ways I “became” the patient for periods of time. I was allowed to live in that light by him, and it allowed me to work my hardest towards the goal of his having a successful outcome. He would even have to point out at times, “I’m the patient,” or “It’s my body.” I didn’t mind because I knew it.

This blending felt strange, and it was an experience that I hadn’t had with a human before. It could be called closeness, but it was so much more. The separation between patient and partner occurs with the surgery and after, something the partner does not experience. The emotion bound us together while logically I knew we were two people; however, I wouldn’t be completely cognizant of the real separation until he was lying in the hospital bed.

My first instinct when he told me he had cancer was I wished it were me. Beyond that, my second line of thought was that his kids depended on him—fully grown, in their 20s and 30s, they still needed him. But it didn’t take long to get my wits about me and realize I did not want to be the patient, partly because I didn’t want to be sick, but too, because I knew I could be strong for him, stronger than I could for myself. As Dan would later say to his sister in law, he knew I would get in the way of the surgeon as he pivoted above him with the knife if I needed to.

Saying that I was not looking forward to the surgery was an understatement. It scared me. It was inconceivable that it would actually happen. No wonder Dan was in denial, for as close to reality and as engaged as I felt, it was unbelievable to me. If it were my body, I would choose Dr. Goetz, I repeated to him. It is the same operation, not matter who is performing it. Yes, Dixon was the hotshot, but Goetz must be pretty damned good too. I would want to see her face when I fell asleep before surgery, and her face when I woke up in the hospital bed, connected to tubes.

My own denial, I suppose, stemmed from fear of Dan’s getting injured or dying. I wanted to protect him like a mother does a baby. What would his body look like with all that tissue removed and a bag attached to it? Would his butt sag, look hollow? Would the bag get in the way of sex and intimacy? How would that change our relationship? I put that out of my head, remembering that the aim was to keep him alive for as many years as possible so we would have the rest of our lives together. Then, there was the fear of sexual dysfunction. A 10% risk, this could affect him for a short period or forever.

An opportunity. This was how I came to look at the whole experience. An opportunity to spend time together, to go through a life-changing, life-affirming process together, with many ways for me to show I loved him. He was open enough to break down and ask for reassurance. Not outside, to anyone at work, but to me. He was stoic on the face of the disease to the world, and later to the support group itself.

What arose from the blurring of the patient and partner, and sharing the experience was the realization that out of tragedy comes awareness. In our case, love and trust became clearer. One grows or grows up quickly in this circumstance. I understood for the first time what it meant to share a life with someone and be part of something larger than myself. It made me face the more difficult, crotchety aspects of my personality quickly, get myself in order.

What being drawn into this did, also, was to draw me out of the funk I had been in, mourning my cat’s death of a year earlier. It brought me back to life, and into the moment in a way I had never been before, as I was someone with the inclination for nostalgia, for things that existed and some that never existed.

While denial was one result, or function, of this state of affairs, mourning was another. Dan went through a mourning process early on, when part of him realized he would lose a chunk of his body, lose function, and lose the clear clean lines of his abdomen forever. He would lose the naked body he was born with, something taken for granted. Nothing would be the same after the surgery. The physical change, imminent, dictated emotional upheaval.

I am not saying that we got along perfectly. The night before our rescheduled appointment with Dr. Varma, I said to him that if I was responsible for the envelope, it would have made it to San Francisco the previous Friday. Then, I said, if I had any sense, I would put the envelope downstairs by the front door that moment. There was so much tension, not between us mostly, but around us. Sometimes it got released in a bad way. Exhaustion was part of it. Sometimes it felt like my skeleton was dissolving when emotional came pouring out. 

Ten: Dr. Varma of UCSF 2nd Appointment, May 8th, 2009

Asilomar May 1, 2009

Finally, the following Friday, we got to see the great Dr. Varma.

“It’s like seeing Sinatra,” I joked.

Before Varma came into the room, however, we had to talk to the nurse practitioner for 20 minutes. We had seen her while we were out in the waiting area, as she darted up to the front desk and back into the rooms beyond, her long light brown hair bouncing around in a ponytail. We were in one of the rooms beyond now.

She asked the usual questions. Being a patient is like being a prisoner, except the line of fire is a different set of queries. When did you discover something was wrong? When was the diagnosis? What does your diet consist of? Do you drink? (Since I was there she probably dropped the sexual relations question.) Are you married? How old are you? She seemed experienced and her manner was respectful yet warm. Yet she was not Dr. Varma—she was an appetizer rather than the main dish.

Finally, when the doctor knocked on the door, we had practically forgotten about her. Dr. Varma had blunt cut short dark hair, younger than I had imagined, for all her power. She must have been similar in age to Dr. Goetz and Dr. Dixon. Dan and I had found out that they had all studied together, under a man named Dr. Garcia-Aguilar. It was his name which was still on the UCSF web pages as the head of colorectal cancer, but he had abdicated the throne and gone to work for the City of Hope in Southern California, a cancer facility specializing in cutting-edge work. Dr. Varna had inherited the position.

Varma was top dog now. She was serious, to the point, and it was clear that she was overbooked. She examined Dan, using an old-style metal scope to look up the rectum, which looked like it from Shakespeare’s time.

She said she had looked over the records and discs. She could do a resection, even though the site was very low. “It’s more complicated with women down there than for men.”

Somehow, the comparison was supposed to make us feel better? Complete removal of the rectum would be necessary in any case.

There was a knock on the door, followed by Dr. Varma’s muffled voice as she popped her head out the door.

She reeled her head back in. “I’m sorry. I must go now.”

And then she left, without waiting for an answer.

The nurse practitioner calmly explained that the appointment was over. “Do you want to say goodbye to the doctor?”

We said yes. We talked more with the nurse practitioner before she went out to retrieve the doctor.

 Dr. Varma popped her head in. “Let me know if you have any more questions,” she said.

She shook both our hands, before fading away again, out the door.

Dan and I made our way out, down the hall past the construction zone with its loud jack hammers and pounding, and down the elevator to the parking garage. I told him I felt cheated after all that led up to this appointment. Yet, Varma was obviously competent; beyond that, she was highly experienced, and we respected her opinion. We had gotten our outside opinion—the answer we wanted. The site of the polyp was too low.

I joked that the reason Dr. Goetz had gone to Kaiser was that Varma had been chosen as Garcia-Aguilar’s successor, and bitter, Goetz defected.

While Dr. Varma seemed more positive about a resection than anyone else, perhaps we didn’t trust her, coming as late as her opinion did. Or, maybe it was that Dan’s Kaiser insurance didn’t cover UCSF care beyond a minimum. We didn’t even find out if it covered 20% or 50% or what, out of pocket.

Nine: Asilomar, May 1st through 3rd, 2009

Asilomar May 1 2009

I have visited this refuge since I was little, when my father discovered it as a social worker attending a conference in the 1960s, and we began going as a family with him in the summer, and later discovered their Thanksgiving buffet and winter in the Monterey Bay area, usually crisp and clear. My father's mood always improved there, so he was more easy going.

I introduced Dan to Asilomar the winter after we met in 2005—our first real vacation together, the first place we shared that didn’t belong to either of us. He found it a perfect mix of camping and comfort, because of the rustic accommodations. We really needed this respite, and even though we hadn’t gotten in to see Doctor Varma, the appointments, consultations, research, and stress of making life-changing decisions warranted a getaway.

This time, instead of one of the “historical units,” built by Julia Morgan, we got one of the “modern units,” built by John Carl Warnecke in the 1970s. Having come here my whole life, I prided myself on knowing about the architecture and features about the place. The modern units had their own fireplace (the historic had small rooms with a shared living room and fireplace), and here, with the large living room / bedroom, and porch looking out onto the dunes, scrub, and pines, it felt luxurious. None of the rooms have TV nor phone, no computer access. You have to go to the “Social Hall” (Administration building) for those purposes. Dan played his guitar like he hadn’t in months. Then we walked out to Asilomar State Beach and along the boardwalk, and then back along Asilomar Blvd, making a movie with the new camera. The rain came, more as a drizzle.

We rounded the turn where the state beach ends, with its restored dunes with native plants, and the rest of the coast opens up, with ice plant and barren rock. A camper parked along the road. People tended to park here to run down to the tidepools and look at the seals.

Dan stopped. “Look,” he said.

In the front cab window of the camper, sat a cat. I walked around to the side. 


A woman came to the open doorway and stepped down one step, hovering over us. Wiry and petite, appearing old and young at once, she spoke. “Good morning. “

“We noticed your cat,” I said.

“Oh, that’s Amber. Amber, come here. I have two more in back, but they’re shy. She’s the greeter.” She motioned to the inside of the vehicle.

Cat carriers and food bowls lined what was like a hallway leading to the back, where the bedroom must have been.

“Here she is,” said the woman, coaxing the cat out.

Amber was a tortoiseshell unlike I had ever seen, with hair like a bottle brush, thick and brisk, a golden color. Obviously, one parent had been an orange cat. The cat had lived all its lives already, it seemed, from the torn ears, rough coat, and one milky eye.

The woman explained that she had left Wisconsin when she lost her house, and decided to go on the road with her cats. She had been doing this for years on no money.

“I let the cats out when they want—I can’t stop them, and they always come back. We communicate silently... I just know,” she said.

I wondered when was the last time she had seen a doctor. My awareness of health concerns had heightened with Dan’s condition. Was her glasses prescription up to date? When did she last have a regular check up, a pap smear? What do the homeless do? I had assigned my classes readings on the homeless recently, and here it was. She didn’t consider herself homeless, it seemed, like a turtle, trolling around wherever she liked, enjoying meeting people.

Dan and I looked at each other after a point, thinking we had enough of listening to her, not because she wasn’t interesting, but because we are both listeners, and tend to find ourselves in situations where people talk at us until we're exhausted.

It started raining for real and I opened my umbrella. Dan had his hood on.

“Well, we should be going,” I said.

“Nice meeting you,” she said, pushing her purple tinted glasses up on her nose. She then held out her hand. “My name is Tricia.”

The hand turned into a hug for both of us. I didn’t expect it. This was what I needed.

“I channel St. Francis, Jesus, and my higher power,” she said.

“Um, really?” I responded.

She disappeared into the vehicle for a minute before reappearing.

“Here—this came to me one morning through my personal higher power. And here, this is a prayer of St. Francis.”

One was a few 8 ½ x 11 purple sheets of paper stapled together with the writing, and the other was an oversized post card with the prayer on it, against a picture of angels.

She explained. “It’s called automatic writing.” Then she popped back inside before reappearing with an envelope for both.

I thanked her and we slipped off into the rain, stopping to look at the seals before our walk back to Asilomar.

Most times, I would have dismissed her as a nut. Perhaps it was my concern for her health and welfare, a woman on her own in a country that did not support a person unaffiliated, or perhaps it was because for months I had cared for and emotionally supported Dan, who had a health condition, so my understanding for her situation simply existed. She chose to do this and said she enjoyed the freedom, respected her cat’s freedom, communicated with her cats and the world beyond. But she was alone and I wondered what end she would meet, let alone her cats. 

Eight: Dr. Varna of UCSF, First Appointment May 1st, 2009

Pete & Joni's wedding September 2006

We trekked out to UCSF early one Friday morning to see Dr. Varna, our outside opinion. Dan had taken the day off work. The plan was this: first the appointment, find out her recommendation, and then drive down to Pacific Grove on the Monterey Peninsula, to Asilomar, where we would not only mull over Varna’s words, but take a break from it all at the ocean’s edge.

We got off the freeway at the old Fell Street exit and proceeded to Divisadero Street.

“Did you take the medical envelope?” Dan asked.

“No,” I said.

He was silent. I could hear him sink.

“Well work it out,” I said.

But it sounded like he knew it wouldn’t work out, and I didn’t understand why. In the envelope left behind on our bedroom dresser, while we packed a weekend’s worth of clothes and other belongings into the car, were all the medical records and one disc.

Arriving at the medical center, we parked, and took the elevator up. Inside the building, we walked through what could only be described as a construction area. They were ripping up the former office spaces for a good reason, probably, but the disruption mirrored our own situation—how torn apart Dan was at the idea of surgery, how they wanted to rip him open, and too, how we had forgotten the envelope. The grey-blue walls looked like a hand had just smashed through them, with the random lines of destruction.

We walked to the end of the hall, where we found a small waiting room with a moon-shaped desk. These walls were in tact and quiet. A couple of other patients sat on the blue chairs, idling through magazines. Both Dan and I went up to the front desk. This was different than at Kaiser, where Dan only went up. The women here were busy, but friendly.

We explained our situation, that we had left the records behind. Our expectations were raised when one of the staff zoned in our grave need for this to happen now, immediately placing a call to Kaiser, and havubg them fax over the records. Her efficiency was impressive, different than the slower pace over at Kaiser. The only items missing were the two sonograms, the early one of his colon and the recent one of the liver.

After talking to another women who came out from the back, the woman who had called Kaiser spoke to us. 


"The doctor won't see you," she said.


Dan and I stared at each other in disbelief. The woman tried as best she could, her voice calm and encouraging, yet firm, as she balanced the many tasks as hand. This was hard to not take personally. We were focused on this, needed it to happen now.

I explained to her that when I had made the appointment weeks before they didn’t ask for the disc of the liver because it had not even been ordered by the doctor, a follow-up procedure to check for metastasization. All this means is even if we had brought the envelope, the doctor would have refused to see us because we didn’t have every single record.

Everything hinged on Varma’s opinion at this moment, and Dixon offered us a surgery date in enough time after this appointment for us to consider her opinion. It all fit together perfectly, but it was falling apart now like a house of cards, each piece so fragile and without weight. She did not know us, this doctor. Dan was an unknown record.

The woman offered to rebook the appointment for the only time that was available for them—the following Friday. Complication. We had a surgery date for the Monday following the new appointment with Varma. We would have to cancel the surgery date because there wouldn’t be enough time to mull over Varna’s perspective, the whole idea in seeing her. We took the appointment anyhow.

As we walked out, Dan theorized that the doctor probably had over-booked her schedule on purpose and needed an excuse to drop someone so she could get out on time for her afternoon appointments, which we had been told by the desk person, was not with patients.

Seven: The Women’s Poetry Salon, April 25th, 2009

Hobee's May 20, 2006

Saturday, I attended the women’s poetry potluck and Salon that I am a member of. It meets every six weeks or so, and people take turns hosting. The group consists of women in their 40s and 50s mostly. Among them, I am one of five whose partner or husband have had cancer. Two lost their husbands years ago; one remarried a few years back, while one recently remarried. Another shaved her head in solidarity with her husband’s chemo. He is doing fine after a second round of treatment. The other has recently started dating again after losing her husband years ago. It was she who hosted the salon.

She was a woman with thin blonde haired who I last saw at one other Salon, and who read erotic poetry. This time, she read a poem called “9 Types of Fog.” It told the story of the cancer her husband suffered and died from.

 I searched her out in the kitchen during the break. We stood near the stove in the cozy room, with walls inside painted a bright yellow, windows facing out to trees.

“What kind of cancer was it?” I asked.

“Colon. It came back after they tackled it, spread to his liver, killed him,” she said.

She explained that she had two sons, now outgrown the house, and so she lived here alone most of the time. She gave me names of two friends who had gone through colon cancer, with bags, both local.

You would never know from the outside of this humble house that so much went on. The yellow kitchen screamed bright cheerfulness. Tibetan Tonkas hung on the walls of the living room. 


As usual, we all read two poems aloud each, testifying of strength within, among copper statues of buddha and built-in bookcases. Eight years after her husband's death, she spoke in the poem of fog, how it infiltrates. And she told of how her son’s hamster, at the time, was preyed upon by the owl which flew by their windows—too close.

I wondered when life became ordinary again after that time in her life when the fog clung to empty webs. 

Six: Dr. Thomas, Kaiser Oncology April 24th, 2009

James Irvine Trail August 2008

Dan was against radiation— how it made the patient sick, weak, nauseous, incurred hair loss and weight loss. Why would anyone willingly submit themselves to it? The poster child for a cancer patient is this, with a wig (think breast cancer.)

The oncologist, Dr. Eva Thomas, met with us across the street at Kaiser’s old oncology department. 

Dr. Thomas was well-dressed, a vision of black, white, and gold, with her skirt and top, and matching jewelry—not flashy, but not stuffy either. She led us into a large examining room which had a bed off to the side and several chairs, as well as a table. We all sat on chairs, at equal height, a first. This was a discussion, not an examination. I felt like an adult, rather than a child being tended to by a parent. My legs were not dangling from a little high bed—they touched the floor firmly.

Dr. Thomas talked to us frankly, echoing Dr. Goetz.

“It’s not standard for someone with stage one to have oncology treatment,” she said.

In the back of my mind, I was still entertaining the idea of a transanal excision, partly because I had read on the CC Connections website rave reviews from people, mainly women, who had success with it.

She spoke clearly, explaining that chemo worked with radiation, augmenting its affects. Radiation would proceed for about five weeks on a daily basis. The chemo is a chemical inserted into a big vein in the neck during radiation. The 5FU chemo, she said, did not result in hair loss. But diarrhea, nausea, abdominal pain, and mouth sores were to be expected. Another chemo option, Xoloda, a pill, could be taken by mouth two times a day.

“Let me know what you decide,” she said, as we shook hands with her.

We walked out of the building and around to the garage to get the car.

“ I don’t want to be a cancer patient," Dan said.

He saw the colostomy now as Dixon presented it to us: Dan was an otherwise healthy, fit man who enjoyed walking and wanted to be able to do a ten mile hike if he wanted, without issue, and no leakage. Dan didn’t want to invest in the medical system physically or emotionally any longer than he had to. He didn’t want to risk the resection, with its ominous potential problems. 

Five: Dr. Goetz at Kaiser, April 24th, 2009

Monterey Coast December, 2008

Where Dixon was brief, his colleague Dr. Laura Goetz was expansive in her explanations. While he described one route, she opened up the map, allowing us the feeling that we were deciding. She was a woman, and whether or not that alone translated into breaking the paternal model, I do not know. Unlike Dixon, she came from a liberal arts background. She and her sister, we read on her Kaiser bio, had spent time helping others in Africa. Her long brown hair was wound on the top of her head. Her dark brown eyes focused on you, the patient. She spoke, and then listened. Actually listened.

“It’s your choice,” she said.

Beyond paternalism, Goetz broke the model for me on what a good doctor should be—her patience, her focus, her combination of professionalism and down-to-earth ease. I would want her to operate on me, not Dixon, I told Dan after the appointment. He was in love with her too. She blew our minds. She asked Dan what had brought him in to see his doctor in the first place—in other words, how was the cancer discovered. Dixon had not asked. She dismissed Dan’s General Practitioner’s diagnosis of acid reflux with a guffaw. She wanted Dan to tell his story, like a good listener does, drawing him out.

She examined him, the “digital exam,” which means the doctor sticks a finger up the anus. Dan was used to this by now, the literal prodding and the need for more information.

Our questions stemmed from our considerable research on options other than radical surgery. The anal excision did not remove of as much tissue and was an outpatient treatment. That, in combination with radiation was one option.

“No,” she said. “It isn’t typically used for this diagnosis.”

She reminded us of the behavior of the lymph nodes, which direction they spread.

We asked her,” What if we did nothing?”

She said, “You can look at percentages, she instructed, but beyond that you have to make your own decision because you don’t know where you’re going to fall—in the 30% or the 70%. I’ve had five patients who have gone off to Asia or Europe to do alternative cures, all with early stage, and who have all come back with a more advanced disease.”

I asked Dr. Goetz about another surgery I had read about and seen touted on the chat sites, “T.E.M,” excising, different than the transanal excision. T.E.M. takes no lymph nodes—just the area around where the polyp was found. This was another sphincter-saving operation, like the transanal excision. Those muscles at the anus—so valuable, people risked cancer turning to spare them, as tissue was left behind. 


She said we would need to consult with an oncologist and radiation oncologist. After the T.E.M. procedure, she told us, they would do an ultrasound of the anus to see if the lymph nodes had enlarged. This had a 75 – 80% chance for telling the truth. “Close surveillance” meant ultrasound every few months for 2-3 years. The follow up would also involve 1-2 other excisions in the operating room—not just a minor procedure, in other words. T.E.M., she said, takes the full thickness, a segment of the rectum. The upshot: 10% of the cancer returning with a minor operation, and 100% guarantee for return if one did nothing. She also warned that the Kaiser oncologists would most likely resist doing radiation for stage one cancer, as an adjuvant therapy—it was used with stage 2, stage 3, stage 4.

We still had an appointment with the oncologist later that afternoon, which we would keep, but after talking to Dr. Goetz, the lay of the land was clear. I now saw that radical surgery was the 98% solution. I wanted to make amends with it, imagine it. 

Four: Dr. Dixon Second Consultation, April 17th, 2009, Salsa and the Aftermath

While our first consultation with Dr. Dixon did not inspire much confidence in me— his certainty, little discussion, and his sudden disappearance— our second meeting with him proved more auspicious.


Rather than scrubs, he cut style in slacks and a shirt with a tie under his long white coat. We were his last visit for the day, and he was on the verge of his week-long vacation, we knew. But the tie? Bold green and blue, shiny wide stripes, it stood out against the subtle green shirt, the deep blue of the tie reflecting his eyes. Not suitable for a business meeting nor daily business, this tie screamed "social activity." He looked a little swank for the likes of Kaiser. I theorized later that he had a dinner engagement. File the tie under the Lives of Doctors, the encyclopedia.

We asked Dixon if we would be able to take our trip to England as planned at the end of May.

“I don’t see any reason why you can’t do it,” he said, as confident about that as anything else.

We asked about second opinions. Dixon recommended we talk with his colleague, Dr. Goetz, also at Kaiser, formerly of UCSF, almost like an outside opinion. We said we were going to get an opinion from UCSF itself, but would be glad to talk to Dr. Goetz. Additionally, Dixon said he would confer with someone else outside Kaiser, a man named Dr. Garcia-Aguilar.

When we got home, we discussed the meeting. Dan seized on the validity of the colostomy, what Dixon seemed to prescribe over the resection. The colostomy would entail taking the colon and creating an opening, or “stoma” where a bag would attach outside the body, near the belly button. The entire section of the colon, and lowest part called the rectum, would be removed, as well as a "margin" of surrounding tissue, which held the possibly cancerous lymph nodes. The rectum opening, then, would be sewed up, no longer useful since the waste would be re-routed to the “stoma.”

We take the rectum for granted in our daily function was the rectum, with its storage area, and the anus too, which its sphincter muscles. Dan suddenly valued all this now that he was going to lose it. What an amazing system, we thought, and it was funny how we suddenly loved it. The brain controls the sphincter muscles in the anus, one on either side. This keeps the waste produced over time in storage. Without a sphincter the brain doesn’t know where to send its signals, and leakage becomes dangerously imminent. The lowness, then, of the cancer site, was more crucial to our decision than the “stage,” ironically. If the polyp had been found in the sigmoid colon, the curved section next up from the rectum section, or in the colon itself, above the sigmoid, then a resection would have been a certainty and we wouldn't be talking about a colostomy bag.

Dan’s disbelief made sense. When someone tells you need radical surgery, but you have such an early stage cancer it may not even have spread, let alone be causing real symptoms other than what you thought was gastrointestinal burning, how can you not look at them and think they’re crazy? Earlier he had gone in to see his G.P. in February complaining of stomach problems and she prescribed ant-acids. At least she also ordered a sigmoidoscopy, where the two polyps were found—one a tiny pebble-size, the other large enough the for the room full of staff to hush suddenly, and then step in to another room to talk, Dan lying on the table, ears open, heart pounding.

The rest of that week, as our hope of normalcy disappeared, we chose research and second opinions over the trip, and with this decision something to look forward to was lost. I canceled the accommodations I had booked in the Cotswolds, York, and London. In spite of this reality, I still fantasized about even extending the trip for a few days so we could add in the Lake District, a great place to go hiking. I thought, we could go to Amsterdam, then Belgium, then Paris, Normandy, and then fly out of Paris. I wanted to be poetic, dream and write, but I couldn’t really during this time of pragmatism, questions, and research. 


Too many people reassured me it would be okay in the end. This was not useful to hear. I wanted answers, real help. I said to Dan that making the right decision was more important than rushing. We needed time to do this right. Pressure at Dan’s work to be productive was met by the response from me that he needed to make the Kaiser appointments and work from home on those days. They would have to understand. Sometimes he had one test, and sometimes he had two or three appointments in one day. It varied, with blood test, CAT Scans, ultrasounds of the rectum and liver, which I didn’t join him in, and consultations, which I did. The upside— it was a bonus to spend time during the weekdays together, discuss options, make decisions, do this work. And we worked well together.

Dan said he was going to have the radical surgery for his kids and me. Otherwise he would do nothing, he said. I later heard in my partners support group that this is a common statement. But at the time, it disturbed me that he wouldn’t want to do it for his own life. It was hard to hear.

One day, at a lunch break during a busy day full of appointments at Kaiser, we sat at the taco shop nearby.

“We should get married,” he said.

I spilled salsa on his pants leg, the red chunky sauce dripping down the tan material.

We talked about legal rights of partners, of wills, of social security. What if he were to die? This was the implied question lurking underneath. Me, who never intended on marriage, and he, who had been married for twelve years but irreverently, eloping with her because their landlord thought they already were.

The result of this discussion: he put me on his checking account and added my Social Security number to his work’s life insurance policy. Dan said he felt like he was preparing to die, writing a medical directive— getting his “affairs in order,” as he put it. I said it should have been done before anyhow, but it was hard for me to respond to his morbid frame of mind. When we talked about getting married, I wasn’t thinking about doing it because he was going to die. I was responding to him, and that arose out of the legal issues. My mother collected my father’s social security after he died because it was larger than her own. The idea of marriage arising out of something negative bothered me, though, so I had to reassure him.

“You would marry someone with a bag?” he said.

“Not someone—you.” And I responded with a kiss.

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.