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.