Category Archives: A Son’s View

Cameron talks about Inge, his mother, and the Camino.

Missing Her Already

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Mom enjoying the beauty in Ouray about a month ago

Mom enjoys the beauty in Ouray from her new wheelchair, jus a month ago

Adam arrived on Tuesday night. It’s good news:  he sleeps irregularly, so he’s often up in the middle of the night — just like Mom. He makes her coffee and breakfast and keeps her company before I’m even up.

On Wednesday morning there is an email from Julio, one of our companions on the Camino de Santiago. He must have read the blog post in the email he is responding to, but he cannot bring himself to mention it. He writes:

Inge , you look nice in the pic, i think last time i saw you, you were looking with less weight …
You still my heroine, my amazon, always struggling to survive and always nice smile. Olé …

She takes Ativan, otherwise known as Lorazepam. The label says it’s for anxiety, but the main benefit is to prevent nausea. The downside? It makes her very sleepy. She is usually sleeping, and when she is awake she is nearly still asleep. Her speech is slower, her cognition slower, her laugh also slowed-down. She is no longer alert. She makes a few jokes, but she isn’t talking about food and cooking, not watching TV, not making much conversation – even the kind that used to annoy me. Our shopping together, even with her in an electric cart, has stopped.

I judge myself for thoughts of missing my mother: am I being sentimental? Maudlin? But the thoughts continue: I miss my mom. She’s still here, but I miss her.

Mom groans and stirs on the couch.

“What is it?” I ask.

“I need something for my lung,” she says, reaching a hand around her right flank.

“It hurts?”

She nods.

Later, she begins hiccuping again. She has done this for a few months now.

“Something you ate?” Adam asks, tenderly.

“No,” she says.

No, I think, something that’s eating her.

And then she sleeps, and sleeps, head back, mouth partially open. Her face has lost its fat, and her skin hangs in some places and is taut in others.

My heart is breaking. My mother is still alive, and yet my heart is already breaking.

In the evening I heat up some drunken noodles, but before eating anything I stop in the doorway of her bedroom and watch her sleep. Her head is back, her mouth open. She reminds me of Oma, at the end. I go into her room and see her eyes open slightly. “Do you want the light off?” I ask. She nods or murmurs and I turn off the light. I bend down and kiss her on the head and hug her and put my head and face against hers. She says something I can’t hear. I tell her goodnight and she repeats herself so I can make it out: she wants me to lie in the bed for a while.

I go around the bed and crawl in. I had wanted to do something like this, but she was usually on her couch when she was awake. Now it doesn’t seem to make any difference if she is sleeping. She turns on her side and I lie next to her with my arm draped lightly over her side. My face is pressed up against the cloth of her pajamas at the neck and her hair. Every now and then, our breathing follows the same rhythm. I smell the scent of her hair and pajamas. She is so frail. My eyes leak water. I feel tears from my right eye drip across the bridge of my nose, down the other side, and around the left side of my mouth. I feel them wet her short, grey hair. I lie there, thinking of stopping time. Of making this moment go on forever.

Will my mother be here in a week?

After perhaps 20 minutes, maybe 30, I am hungry and want to return to my now-cold drunken noodles. I begin to extricate myself but she turns and puts her right arm across my chest and around the right side of my head. The fingers of my right hand clasp her upper arm. “You my sonny boy?” she murmurs. “My sonny boy.”

“Always,” I say, in a fierce whisper.

I try to be present, try to soak it up. Will I remember this? Let me build a memory. I feel her breathing. I feel her hand, lightly clasping mine on her stomach. I see the light coming through her open door from the living room. I can’t believe I am even here. I am so sad, so afraid.

I love her so very much.

Starting the Camino de Santiago, September 2011

Mom and I starting the Camino de Santiago, September 2011, with Don Julio Redondo of Bilbao, left

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom and Julio

The Day the Earth Moved

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Most of this post was written on Tuesday, four days ago.2014-08-16 09.19.57

Yesterday, it seemed everything was changing. At a little before 9a.m., I got a text from my mother’s friend Peggy. It was the most frightening communication I’ve ever received:

Hi Cameron. Hospice nurse is going to call you. Please come down today. I believe she is getting very close and she can’t be left alone at night.

I left her a message asking if she was saying what I thought she was saying. I was already dressed for yoga.  I wondered what to do. I thought about how the yoga mat is a microcosm of the world, and that the balance and groundedness we find on the mat can be brought with us into the rest of the world. I thought about people telling me, as a caregiver, to take care of myself. So I went. But for the first ten minutes I just wanted to leave. I was having a hard time not crying. I kept wiping my eyes so as not to draw attention to myself. I stuck it out, but left quickly after the class, without talking to anyone. I knew a single word or look could set me off.

Back from yoga, I saw a voicemail from Peggy. “Oh, God,” I said. I felt a little wobbly. I pressed play to listen to the message. “When I mean she’s getting close,” Peggy said in her message, “I mean very close.” Peggy had just watched her ex-husband die, rather suddenly, of a fast-spreading cancer. And Mom had vomited forcefully all night.  She was unable to eat or even to drink.  She was too weak to walk or even to stand up safely.

I began to sob. No! I’m not ready!

You’re never ready.

It’s just too fast. 

I began to move about my Telluride apartment quickly, throwing things into the duffel bag and laptop backpack I usually take to Montrose. I said goodbye to Danny, my new housemate. On the drive I cried. I drove sobbing, and at times with a keening wail, a wail as long as my outbreath and higher in pitch than anything I’ve heard come out of my body before. 

When I came in through Mom’s kitchen door, Berle and Peggy and Monika were there.

“Superman is here!” Peggy said.

“Your mom keeps asking for you,” Berle said.

They gathered around me and hugged me. Mom called out to me.

I went to Mom, looking spent on her couch, and kissed the top of her head. I cradled her beautiful head. “I don’t want to go, she said,” in a near whisper. “I just want a little longer.”

“I know,” I said. “You are the light of my life.”

I leaned down onto the couch and hugged her for a long time. After a while I went back into the kitchen to fetch my laptop. I needed to cancel all my coaching appointments for the day, and for Tuesday as well. I sat down on one of the small white chairs in the kitchen, opened my laptop, and began to cry quietly. The women gathered around me and hugged me. “You won’t be alone, Cameron,” Peggy said firmly. “We’ll be here with you.”

A few weeks ago, my mother said she was concerned about leaving me alone because of, she said, “your abandonment issues”.

“I’ll be okay, Mom,” I said, because that is the correct thing to say. “Don’t suffer more because you’re worried about me.”

“I know,” she’d said. “I just want to continue to be able to help you, to cook food for you and do things for you.”

On the other couch, which stood parallel to Mom’s, I sat next to Bonnie, whom my mother has known since they both worked at the local courthouse in the early 1990s. I said to her, sotto voce, “I was really scared this morning when Peggy said Mom may be near the end.”  Perhaps I hoped that she would amend Peggy’s dire fears.

Bonnie, who had also recently seen death from cancer up close, looked at me with compassion. “She may be,” she said.  “We just don’t know.”

I noticed I was now barely giving a thought to the stress that had plagued me for several days prior, that of my landlord threatening to evict my housemate and I unless we signed a lease less favorable than the one we’d just signed a few days earlier, and insisting on bogus grounds that we didn’t already have a binding contract. And being pretty dickish about the whole thing. There was little room for that concern anymore. I was beside myself with the admixture of fear and sadness we feel whenever we must contemplate letting go.

My sister-in-law, Jannilyn, arrived from Grand Junction. She came with her mother, Linda, who soon put her massage skills to work on Mom’s left foot (Silke had the right). Carrie’s mother, my second cousin Laurel, had insisted on driving her, because, Laurel said, Carrie was “a mess” and couldn’t drive herself. Mom’s young friend Gregory, whom she has helped to raise since his birth, came with his father, Paul, and sat on the couch at Mom’s feet. Gregory’s older sister Annika entered and went straight for her mother’s knee. She didn’t go to Mom until she was leaving, but I did see that her eyes had filled up. Gregory saw my tear-filled eyes at one point, and the next time I looked up at him, his eyes were red too.

Linda, who is Filipino, presented my mother with a beautiful purple scarf and a stunning red wool coat that had been too long for her.Mom put the scarf on, a swirly purple contrasting with her light-blue pajamas. On my phone I looked up the poem “When I Grow Old I Shall Wear Purple,” with its stirring opening lines “When I am an old woman I shall wear purple / With a red hat which doesn’t go, and doesn’t suit me.” I read it aloud and Mom smiled. I wondered if she would ever wear that red coat.

On a few occasions, as she lay on her couch by the window, Mom spoke to the assembled American visitors in German. Something about her sister, her father, and a letter. She said other, unclear things. She was heavily medicated with her IV painkiller and Ativan, a powerful anti-anxiety drug and relaxant that would supposedly help her to feel less nauseated, and to vomit less.

In the late afternoon my friend Laurel drove from Telluride bearing red curry and wine and hand-crafted sodas, as well as her own sleeping bag. She went to the store and bought groceries and night-lights. She doled out red curry and rice.  Later, she helped the four of us put Mom to bed, which is a logistical operation involving four pillows, the microwaveable Teddy bear, several forms of marijuana, smartwater, the IV unit, and a small orange bowl of Ativan tablets I’d cut in two. Mom was too weak to get up – unlike earlier in the day, when we’d led her to the bathroom and she’d come back draped on my back and shuffling behind. So I leaned down, cradled her legs in one arm and upper body in the other, and picked her up. As I turned toward the bedroom, she lay her head against my chest. I heard someone, maybe Berle, say Awww. I carried her to her bed and gently laid her down in it. I kissed her face and temples, called her sweetheart.

“She has been so much calmer since you got here,” Peggy said.  “You really calm her down.”

 

“It’s just surreal,” I said to Laurel. We had been watching the mostly mindless TV series “Arrow” almost non-stop from 8:30 to 12:30 and for a moment I wasn’t feeling awful. I knew it wouldn’t last. Morning would come and the mood would return.

11:47p.m. I am troubled that Mom, groggy and often sleeping from the medication, isn’t able to be fully present. It’s harder for her to follow conversations, and certainly difficult for her to express her deepest thoughts, much less her former, larger-than-life personality. One casualty has been those who would communicate by phone. She feels too little energy to have a conversation – most of her speaking is done in sentence fragments – which is too bad for my sister, Candy, my niece, Brianna, and my former wife, Mieshelle, who still says she feels connected to, and tells everyone she meets about, my mother. I don’t want Mom to hurt, or feel nausea, but I do miss her. Will it always be thus, until the end?

I feel a great wave of sadness come over me. I am missing her already.

12:35a.m. Laurel and I had just turned in for the night, Laurel on the green couch in the living room, with her sleeping bag, when I heard a loud thump and my mother’s cries. 

“Cameron, your mother!” Laurel cried. I had already sprung out of bed and sprinted out my bedroom door, running into the bathroom where I saw my mother lying face down on the floor like a police outline. Her pajamas were down to her knees. I reached under her arms and picked her up in an instant. If she’d weighed 300 pounds I’d have still lifted her up like that.

She was sobbing, a bit groggily, and not speaking, so that she sounded eerily like a hurt and confused child. She’d hit her head falling. Laurel helped me to seat my mother on the toilet. I caressed her head, told her to call me whenever she needed to use the bathroom. Having calmed her down, Laurel and I exited. Only a nightlight was on in the bathroom, so I peaked through the crack in the door to make sure she was okay. She was hanging her head, as if asleep.

She was up in the middle of the night. She walked on her own power to the kitchen and made coffee. Laurel awoke and got up with her, and later reported, “She was totally herself.  She was walking around, didn’t need any help, and she was bossy.” She laughed. “She said to me, ‘This is my quiet time, so you can go back to sleep now.’” Laurel laughed again at the memory.

Women my mother has never met are writing in, their love filling up various Facebook pages.

In the morning, I awoke to a message from my good friend Adam, whom I’d known since the first days of law school, in 1989. Without any ado at all, he informed me he would be arriving in Montrose at 8:23p.m. on Tuesday night, and on Facebook he said he would be staying in Colorado “indefinitely”. I felt immediately relieved, and very grateful.

Das war die Grenze

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I am on the phone, trying to listen to a coaching client. This is harder than you might think, because I can also hear, through the spare bedroom door, the sounds of my mother retching.  My Mom’s journey through 2014 has not been what we expected.  

This is how many of her days begin, but to truly understand the beginning of her days, we need to start the night before. She goes to bed at nine o’clock. Just before she retires, she or a friend pulls a spoon out of the freezer and, from the refrigerator, both an orange wedge and a container of applesauce. The spoon is glazed with flour, so that the cannabis oil placed there comes off easily once frozen. She dips the spoon in the applesauce and collects some on the tip. She bites into her orange wedge with one hand, lifts the spoon to her mouth with the other, closes her eyes, grimaces, and swallows the little lump of cannabis oil and the applesauce. She washes away the bitter taste with the rest of the orange wedge. She may take an Ibuprofen — “half an ibuprofen,” she tells people — but for months she took no medication other than cannabis and half an ibuprofen.

Mom, early 2014

Mom, early 2014

More recently, she takes with her to bed the small pump that, with the press of a button, delivers painkillers to the chest port that was installed for last year’s failed chemotherapies. The button works only every eight minutes, though my mother tries to push it only a handful of times a day. I remember when, soon after she got it, she unplugged it for just a little while, and the pain returned. “I guess I’m tied to this thing now,” she said, somewhat mournfully. She is very aware of all the things that she can no longer do, or do alone.

At times that list has included eating, one of her greatest pleasures, or cooking, which for her may rate even higher for the joy it gives to other people. She had to stop visiting me in Telluride many months ago; the altitude was too much, and she could no longer enjoy the spectacle of me singing karaoke. Walking became difficult next, and when it became too much so we got her a wheelchair. Her young friends Annika and Gregory, to whom my mother is practically a grandmother, burst into tears when they saw it.

Annika, right, at a party for Mom

Annika, right, at a party for Mom

On her bedside table you would find a glass pipe into which she will stuff marijuana from a local medical marijuana store, some shatter hash made by some friends, which she will smoke with the marijuana to help her sleep, a bottle of smartwater, her cannabis oil vaporizer pen, and a long bean bag made for her by her friend Madeline. It requires 3 minutes in the microwave and is a balm to the pain in her midsection.

Until recently, at about midnight, perhaps one o’clock, she would wake up in crippling pain. “It feels like there is an animal inside me that’s trying to chew its way out,” she has said.  She would take some more of her cannabis oil (which, as she will tell you, is really more of a paste), and perhaps, though she usually tried not to, some morphine. (Painkillers constipate, which can lead to pain worse than they solve). Some nights the pain was so bad she’d take three hot baths. Somehow the hot water helped where even drugs did not. On a few occasions she called out to me, or even came to my door to wake me up. But there are a few times I will never forget: waking up in the middle of the night to the sound of my mother sobbing, vomiting, as she collapses, exhausted, with her arms over the commode.

Two weeks ago, I was in Telluride when our friend Bonnie texted me to say that she was taking Mom to the ER in Montrose. I jumped in my car and met them at the hospital about eighty minutes later. They put her on pain and nausea medication, but a few hours later she was discharged. At around eight o’clock that night, the pain in her abdomen and kidneys was too much. She was moaning, gasping, with pain. The pain, she had once told me, was worse than childbirth, not quite as bad as kidney stones, but longer-lasting. I would watch her as she sat on the couch, hugging herself, rocking to and fro, tears in her eyes, and I would try to imagine that.  We had to go back to the ER.

We walked out through the back door of her house. I steadied her with one arm and carried her bags and medicine pump in the other hand. Every step or two, she would stop, bent over, sobbing from the pain. Soon I was crying too, quietly, as always, and we stood there together like that, on the flagstone path in the moonlight, and then we trudged on, one step at a time.

There is nothing in life that quite prepares one for this.

From the ER she was admitted to the hospital, where she stayed for three nights. Friends visited. She told one friend, Silke, “Das war die Grenze. Das war die absolut Grenze.” Which means, That was the border, the absolute boundary.  “I couldn’t ever go through that again,” she said to several people afterward. “I’d shoot a dog in that kind of pain.”  She longed for home. But home, when we returned, was a very different place: friendly and helpful hospice nurses were in it now, and Mom was connected to her pain medication pump at all times.

Lately, due to the intravenous medications from hospice, she gets up in the morning less with pain and nausea, and she may sleep without interruption until a luxurious four o’clock. But on one recent morning I was up at nine and found her still in bed, looking drawn and spent. “Are you okay?” I asked. She shook her head, looking forlorn. “Nauseous,” she said. “I’m just trying to get on top of it.” She says this a lot, about pain and nausea: “If I can just get on top of it.” I ask if she wants a joint, she says no, so I draw her a hot bath with Epsom salts. As I retreat to the spare bedroom where I sleep, I can hear her moaning in the tub.

This is how the new day begins. Yesterday she posted on Facebook that she wanted to go for a drive today, to see the colors before they depart. But she doesn’t think she can leave the house. I bring her hot tea and a baguette with butter, and then I get on my coaching call.

After my call we watch her German TV for a while, soaking in the images of the Bavarian Alps on some travel show, oohing and aahing with our desire to be among them. Like in happier times, when we spent many a magical time at her brother Horst’s hotel in the Swiss Alps. Horst, who died unexpectedly only four months ago, from cancer. When the program is over we watch one of the movies I got from a RedBox at City Market the day before, “The Bone Collector,” with Denzel Washington and Angelina Jolie. For lunch we eat a thick soup made by Karla, a darling 83-year-old German friend of my mother’s. Then I go to Starbucks to get in three hours of work.

Her friends visit. Berle, who once texted me, “I love your mother!”, and who for many months brought the fresh goat’s milk that was the only thing my mother could eat. Peggy, who says my mother is like a mother to her (and she like a big sister to me), and whose house I sometimes stay in when Mom’s spare bedroom is full, or I have a friend in town. Karla makes soup and conversation. Silke brings apples and footrubs and a

Silke, center, with my Aunt Christa, left, and cousin Fiona

Silke, center, with my Aunt Christa, left, and cousin Fiona

never-ending smile. Bonnie was with Mom during her first chemotherapy, in 2001.  She comes every Tuesday night. They used to go out to dinner, now they eat in.

Rob comes from across the alley to check on Mom, and to roll the joints that no one else knows how to roll. The neighbors next door mow the lawn. Monika brings kaffee sahne, Epsom salts, and flowers, and fixes Mom’s German TV. Lynn, mother of Annika and Gregory, brings groceries.

Gregory, Mom's little buddy from birth

Gregory, Mom’s little buddy

Lynn also bought my mother a new washing machine, and insisted on giving Mom money for the new Samsung Galaxy phone I recently bought her. Another German named Inge brings books about historical Germany and fresh blueberry scones. Sometimes my sister-in-law, Jannilynn, visits from Grand Junction, bringing her young son, Braxton. Jannilynn has no relation to my mother, but she has really taken Mom to her heart.

Mom hides behind Jannilynn's tresses

Mom hides behind Jannilynn’s tresses

On a weekday afternoon, I will take several more coaching calls in the spare room, pacing the cramped space as I talk. And then from about seven to nine we will watch another movie. Tonight, we watch two-thirds of “Gandhi,” which I last saw in the early 1980s, when it came out.

Some nights I draw her bath, or fetch her oil, or lie next to her on her bed and rub her back or hold her as she tries not to vomit, but holds the blue vomit bag in front of her mouth, just in case.

My mother still expresses gratitude. For a call, a visit, a meal, a strawberry, a tree turning yellow and orange.

The writer and doctor Atul Gawande, in his thoughtful new book, Being Mortal: Medicine and What Matters in the End, writes, “The brain gives us two ways to evaluate experiences like suffering—how we apprehend such experiences in the moment and how we look at them afterward. People seem to have two different selves—an experiencing self who endures every moment equally and a remembering self who, as the Nobel Prize–winning researcher Daniel Kahneman has shown, gives almost all the weight of judgment afterward to just two points in time: the worst moment of an ordeal and the last moment of it. The remembering self and the experiencing self can come to radically different opinions about the same experience—so which one should we listen to?”

Those who love my mother believe their job is to make her most recent memories as full of love and warmth as possible. I am eternally grateful for all of them.

 

My niece, Brianna, visited for two weeks in June, along with her mother, Candace

My niece, Brianna, visited for two weeks in June, along with her mother, Candace

2014-07-10 09.58.06

Mom and I accompany my nephew Dylan to court for a traffic violation

 

 

Constantly Questioning What We Think We Know

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Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah.  However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions.  In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians).  So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases.  I view the results of that kind of discussion more favorably.  While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer? 

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer.  And that another doctor had deemed that nonsense, saying it had to be ovarian cancer.  Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.”  The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor?  Ovarian?

“I have no doubt,” Dr. Denver said, emphatically.  The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon.  He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate.  (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion.  If this was a high-grade cancer, she likely would have died of it by now.  In that sense she’s fortunate.  But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.”  (I now see ambiguity in that “it”  — to see if what shrinks down?  The cancer generally, or the difficult lymph node?  Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?  

She didn’t have the reports in front of her (note to doc:  buy a tablet), she said, but said mucinous was the histology of her ovarian cancer.  “These tumors aren’t known for being chemo-responsive tumors,” she said.  I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous?  I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?”  I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific).  By “everything,” did she mean everything that looked problematic? That was my understanding.  I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable.  This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much.  It will be all scarred in, it will grow back, and any attempt to resect will be even harder.”  As I did many times on the call, I restated this to her in different words to ensure I had understood it.  She went on:  “When you operate and disturb the natural tissue plain, you create more scarring.  If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future?  And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals.  It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science.  The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning.  Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission.  It can get aggressive and resistant to treatment.  Almost every patient on IPT will go into remission, he said.  They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said.  He said it was very good that Mom felt well.  If she feels well with no symptoms, he said, she’ll do better with IPT.  “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”.  She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies?  I’d been unable to find any original studies on the web, and only scant reference to any studies.  I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies.  The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true.  They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United).  There is no money to be made in therapies that aren’t conducive to being patented.  If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices.  In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies.  Doing studies properly costs a lot of money.  IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals.  And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy.  Anything else is just investigational.  She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said.  “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed.  That she hadn’t even heard of it proved that much.  It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said.  She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”:  the systemic assault of chemotherapy was the solution to such a case.

Biopsy

What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay.  There are a variety of them in use; some are good and some are not.  The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said.  A certain amount of tissue.  And she was doubtful you could do that safely.  She concluded:  “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.”  This is the kind of language I look for.  It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us.  We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.

Paging Dr. Chutzpah

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I came to Colorado near the end of February because my mother’s Denver surgeon had

What I brought from Oregon

What I brought from Oregon

said, unequivocally, that surgery on the last of Mom’s tumors would take place “at the end of February or in early March.”  Once I was already in Colorado, the doctor, whom Mom had told I would be flying in for the scheduled surgery, told us removal of the entire tumor would be risky, and was not viable.

Still, I’m glad I am here now to sort out this curious breed of people they call doctors, and to help Mom reason her way through important medical decisions.  I am finding that being a patient-advocate means being a very patient advocate.  Here I am, calling the proton therapy center in Loma Linda, California:

Me:  What do you mean you can’t take people with Stage IV cancer?  Why not?

Bureaucrat (not her actual name or title):  We only do the proton therapy on Stage I and II.

Me:  She’s not symptomatic.  Another proton therapy center thought that made a difference.  No?

Burcrat:  We only do I and II.

Me:  So is there some distinction, as regards proton therapy, that makes Stage I and II different from Stage IV without symptoms?  Or could it be a distinction without a difference?

Burcrat:  Stage IV is the stage we don’t do proton therapy on.

Me (trying another tack):  Can you tell me why that is?

Burcrat:  That’s our policy.

Kafka Was Lucky

The works of Kafka became famous for situations that make more sense than talking to someone who doesn’t know why her organization does what it does.  If only the woman had uttered one of my favorite lines from The Trial, in which two mysterious men materialize in Joseph K.’s apartment and are unresponsive to his queries, the day would have been at least aesthetically perfect.  In The Trial, Joseph K. eventually tries to leave his apartment, but the men tell him:  “You can’t go out, you are arrested.”

“So it seems,” K. replies. “But for what?”

“We are not authorized to tell you that,” he is told.  “Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course.”  And then the hilarious line:  “I am exceeding my instructions in speaking freely to you like this.”

K. tells himself this must all be a practical joke, or at least a mistake, for he lives in “a country with a legal constitution.”  But no.  K. is now in the surreal, irrational world that would come to be called Kafkaesque.

And I am in the world of American medicine, the bloated, inefficient thing we find ourselves stuck with in 2012.  I’m an advocate for my mother in a different kind of trial.  And one of the lesser trials is of our patience.

Witness our experience with the Denver-based gynecological surgeon and oncologist we met above.  We’ve taken to calling her Dr. Chutzpah.

Dr. Chutzpah:  Part I

Nearly two years ago, Dr. Chutzpah told my mother that she, Dr. Chutzpah, would not perform surgery on the tumor now in question unless my mother underwent chemotherapy afterward.  (Yes, afterward.  As if she could legally bind my mother’s post-surgery conduct).  My mother told the doctor that she couldn’t go through another round of chemotherapy.  The doctor said she would not operate without chemotherapy.

Last Monday, Dr. Chutzpah told us that the tumor is now too wound up with veins from the aorta to allow for a safe operation.  She also said that Mom has a mucinous tumor, and that such tumors are usually not responsive to chemotherapy.

Dr. Chutzpah to a White Paging Telephone, Please

So Mom and I unpacked that as best we could.

In order to perform critical surgery, two years ago, that could have prevented the further growth of the tumor, had she required a likely waste of time, my mother’s scarce money, your taxpayer money (Medicare), and, not least, a great deal of statistically unnecessary suffering?

So what should we do now? we asked, two years later.

Dr. Chutzpah suggested that Mom should go through chemotherapy, just in case it worked.

Mom and I were perplexed.  Hadn’t she just said this tumor was unlikely to respond to chemotherapy?

Dr. Chutzpah: Part II

In mid-January, Dr. Chutzpah told Mom to get another $8000 PET scan.  Mom had just had a PET scan in mid-November.

Dr. Chutzpah then had Mom and her friends drive over the Continental Divide, in January, to Denver, for a pre-op procedure – and then sent her home, saying the hospital in Grand Junction had failed to send the critically necessary PET scan.  Once Mom had arrived back home $400 lighter, Dr. Chutzpah’s office located the PET scan.  It had been in her office all along.

But then Dr. Chutzpah said the $8000 PET scan that she had ordered, and which was necessary to the $400, two-day trip to Denver, didn’t show the right information.  She called it “blurry”.  Then Dr. Chutzpah did an interesting thing.  She told my mother to get a CAT scan.

Now, you would think that if a PET scan had been the best choice all along, Dr. Chutzpah would have ordered another one.  Or, if PET scans had a tendency to be “blurry” or to be unlikely to show the object in question, Dr. Chutzpah would have known that and ordered the CAT scan the first time around.

So far, two PET scans and a CAT scan in 60 days.  Who absorbs this cost?  We do.

In any event, Mom, her immune system struggling with the fearful thoughts this confusing process was causing her, immediately went to St. Mary’s Hospital in Grand Junction and underwent a $4000 CAT scan (thank you, readers!).  The hospital again sent the doctor the CD.  Then we heard nothing for several weeks.  How to explain the time-sensitivity that says a November PET scan may not be current enough — but surgery can wait for several weeks after the third scan?  Maybe there is an explanation, but if Mom was given one, she didn’t realize it.

Mom’s nerves were fraying.  She wasn’t sleeping well.

Finally, Dr. Chutzpah left a message last Saturday saying she’d call Mom on Sunday.  On the appointed day, Mom chained herself to her phone and did not go out all day.  There was no call.

Late on Monday, Dr. Chutzpah reached Mom, said she’d called both of us earlier in the day (a curious fib in the age of missed-call lists), and said she hadn’t called on Sunday because, she said, “I thought you might be in church.”

When Mom (who does not go to church) got off the phone, she was incredulous.  “Did she think I’d be in church all day?”

This, too, affected Mom’s sense of trust, and well-being.

Dr. Chutzpah:  Part III — Primum non nocere, or First, do no harm

I watch these things with the eye of a consultant, a coach, a businessperson.  (And a comic, sadly).  I have been passionate about best practices and efficient systems since before I knew their names.  I’ve devised the best ways of doing things, used them, recommended them, helped others build them for my entire career.  And I too am incredulous — at the avoidable waste, inefficiency, and poor service I see in medicine.

Dr. Chutzpah, for example, does not have in place the fundamental operating policies a competently-run business has in place to make a real effort to respect clients’ time, money, and emotional energy (which is, or may as well be, the immune system).  Leaving aside the possibly wasteful scans, here are just a few policies Dr. Chutzpah could implement as easily as creating checklists for them:

  • Waste no patient money, I.  Establish a procedure to ensure that a patient does not even cross town, much less the state, unless the doctor possesses all the tools and information the appointment requires, including a PET scan.
  • Waste no patient money, II. Establish a procedure to ensure that a patient does not expend the time and money to come to an appointment unless all tools are in working order, such as clear PET scans.
  • Take responsibility. If doctor’s office does cause a patient to foreseeably waste time and money, the patient’s overall bill should be reduced to compensate for the increased expense caused by office’s negligence.
  • Pay attention to foreseeable consequences. If you know that a patient is making plans based on what you say, pay attention to what you say.  For example, if you haven’t yet reviewed the CAT scan that would alone tell you if surgery was or was not possible, do not set a date for surgery that others will rely on at their expense.
  • Do not substitute authority for evidence. When you do recommend courses of action, explain why.  Cite a scientific basis for a recommendation.  For example, if chemotherapy doesn’t “usually” work for a particular situation, give the patient, at a minimum, statistics for your interpretation of “usually.”  Better yet, provide the actual studies you are referring to.  Otherwise we have to wonder how cutting-edge your knowledge is, how good your memory, and how well you interpret data.  And because you’re a human being and I’ve read the research on medical errors when doctors don’t implement good systems, I don’t want to rely on you alone.
  • Have the courage to talk about ideas you disfavor. Please address those actions you do not recommend, even if you think they are absurdly alternative.  Because we are going to find out about them, and we will want to know the scientific bases for your dismissal of them.  We’re probably going to ask you anyway; why not be thorough and streamline things in advance?  (Another doctor inspired this addition:  When you are asked about alternative therapies, discuss them rationally and unemotionally, rather than with anger and contempt.  The latter is about your ego.  The former is about your patient).
  • Better yet, write it all down.  It is madness to expect a terrified person to hold in her head everything you tell her, or to take flawless notes.  The mind screams:  What are you thinking?

Dr. Chutzpah’s Last Ride?

Because no doctor had clearly laid out the options for my mother, nor written anything down for her, we were left with a raft of questions.  I called Dr. Chutzpah’s office and left a voice mail saying we had questions.  I asked for her email address.  I said that we would not rent, sell, or barter the email address, but if the doctor was concerned about getting inundated with emails, I could put the questions on a web page and they could view them there.

I mean, right?

Dr. Chutzpah’s nurse called, several days later, to say that I should leave the questions on their answering machine.  Twice she stressed that I should not be worried about leaving “a long message”.  In fact, I was quite brief.  I read off these questions:

  1. What is the primary cancer here?  We have heard ovarian and lung.
  2. How was the stage defined?  What does it mean to be in Stage IV without symptoms?  Is such a Stage IV not qualitatively or quantitatively different from more symptomatic Stage IVs?
  3. Is this tumor metastatic (spreading) from the primary?
  4. Why was chemo required 2 years ago when she’s saying now that Mom’s type of cancer typically doesn’t respond to chemo?
  5. Why not do a chemo compatibility test?
  6. What are your thoughts on partial removal of the tumor first?
  7. Can a biopsy be done without surgery, or in this case is a biopsy about the same procedure as surgery?  If the latter, does it not make sense to do the surgery in order to learn what kind of mass it is?

The next day, the nurse called us back.

“Dr. Chutzpah,” she said, “said that if you have so many questions you will need to make an appointment to see her.”

No, Seriously

“I’m disappointed to hear that,” I told the nurse, “because I think we shouldn’t have that many questions.  Their answers should have been included in a well-thought-out presentation.  And if there’s not going to be any medical exam, it doesn’t make any sense to travel all that way for a conversation that can be done by phone.  Does it?”

Eliminating the only remaining reasonable objection, I added, “We’d be happy to pay her for her time on the phone, but it makes no sense to drive four or more hours to Denver when there won’t even be a physical examination.”

“I will communicate your views to Dr. Chutzpah,” the nurse said.

 

Out from Under Myself

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January 14.  I write that to keep track.  I’ve been sick for almost exactly two weeks, and in a sense I feel like I’ve missed 2012.  I’m in the city now, that singular city, Manhattan. Standing before my MacBook Air at a tall, chairless table in Le Pain Quotidien, the kind of table meant to encourage executives to quaff their coffee and tourists to eat their croissant and then to get the hell out, I begin, suddenly, at long last, to write . . .

I was so happy to get into the city again, after over two weeks away.  If I didn’t get a visual of John Travolta walking the streets to the sound of “Stayin’ Alive”, that’s about how I felt.  Sometimes I can really feel the heels of my shoes hit the sidewalk, and at about 40th Street and 7th Avenue I was having one of those moments.  When I realized my gloves were missing and turned to see my bus heading down 7th I was just starting to listen, on my iPhone, to the guitars of Jet’s blistering “Are You Gonna Be My Girl?”  What are the odds that, just when I need to sprint after a bus, on comes a soundtrack song from the Ski Dance Drive mix?

I leapt into the street, outran a taxi, and ran down the bus.  Whew!  That the gloves weren’t there (I’d left them on the first bus) hardly dampened my enthusiasm.

Afterward, I posted a photo on Facebook, of a different bus, which sparked general outrage that I would stop to take a picture of my prey before running it down.  One person suggested the gloves must have been lined with rabbit fur, but the suggestion is patently ridiculous.  They were actually lined with down harvested from a hundred virgins’ inner thighs.

As I continued my walk to the New York Public Library, I reached into my change pocket and without looking gave the contents to a sad-looking seated man who wasn’t even begging.  Outside the library I would later set up a recurring donation to Somali refugees.

And I walked east on 40th Street and soaked up the energy of the city.

Why didn’t I do this more often over the last two weeks?  Was I thatsick?

Bryant Park Grill, with the New York Public Library behind it

You might wonder – well, you probably aren’t wondering, but lately I have been so self-absorbed I can readily imagine you thinking about me almost as much as I do – you might wonder, I was saying, if I, a coach, made New Year’s resolutions this year.  In most prior years I’d have said no.  This year, I have been putting together ideas, so I have a sort of plan, but it’s not done.  It can’t be done until I figure out what the purpose of 2012 is, other than to scrawl on the wall another tally mark of years gone by.

My resolutions, that is, like me, are a work in serious progress.  Whither Cameron?  There are no yellow arrows here.  “Snap back to reality, oh, there goes gravity,” sings Eminem as I write this.  Exactly.  Back from a camino, or path, with clear markings on it, I am still on this latest quest, the kind of quest outlined in the hero’s journey of myth and cinema.

When I left Bend in August, my plan, which I’d arrived at after visiting several cities last summer, was to move to the winner, San Francisco, sometime after I got back.  That “sometime,” I suppose, holds the rub.  In August I had no idea when my house would sell, but there I was, on an October 14 morning in Galicia, three days from the end of the Camino, executing the closing documents on my house and signing most of my considerable down payment into the recessiosphere.  My wonderful Bend real estate agent, Kelly Neuman, hired movers to pack up my things and put them in storage somewhere in Bend.

At this point in telling my story, the language I overhear myself using with people is revealing:

I sold my house out from under myself.

I find it incredibly useful to watch thoughts, and to deconstruct them like a committee comprised of a literary critic, a psychoanalyst, a lawyer, and a writer (Freud was arguably all of these, the lawyer courtesy of his late 1800s Viennese Judaism).  The metaphor I used – out from under myself — told me I believed, or felt as if, I had knocked the foundations of my life out from under myself, the way you might kick away a ladder you’re standing on.

When I got back to New York on October 22, I wasn’t ready to go back to Oregon on the October 25 flight I’d scheduled.  I felt drained to contemplate it.  Besides, what would I do there?  My life, including my BMW, was in storage.  The Land “World’s Most Expensive Ski Accessory” Rover I listed for sale on Craigslist.  And if I would ever be ready to move to San Francisco, I knew it was not anytime soon.

After all the metaphorical running, running, of the past year-and-a-half, after the literal walk through Spain and jaunt through Portugal, I was, at last, without anything in particular to do.  Oh, the coaching continued, but it was the next mission, the next purposeful and deliberate search for meaning, that was not clear.  And as I tell clients, clarity is confidence, and confidence clarity.  They are really two ways of describing the same phenomenon; you’ll never have one without the other.

In hindsight, it was probably unreasonable to expect that I would attain that clarity and confidence so quickly.  Right.  So, I’ll get back from the trip and I’ll be totally done with the past and completely clear about the future and life will just sort of proceed from there.  There are measurable steps in life’s major transitions, and I was still, on all the evidence, engaged in some form of rest, recovery, recuperation, rejuvenation, perhaps even a subtle, low-grade form of mourning. Whatever it was, I was not my usually hyper-efficient, hard-charging self.

I tried not to resist this, because resisting reality always hurts.  I should be different.  I should be other than what I am.  Even though any sentence that begins with “I” and continues with “should” is almost always untrue on arrival, I “knew” I should be writing.  The following captured thought, repeated incessantly day and night, is how I knew:

I should be writing.

. . . multiplied, like horseflies and gnats and sometimes a mallet, by several thousand.

But what to write?  The camino blog felt over for me.  In title, intent, and practice, it had been a blog about Mom and the Camino and cancer:  I hesitated to make it a blog about me.  But even that was probably academic, because I didn’t know even what I might want to share with the world, or at least with the blog’s hundred-plus readers.  I can see why all the gurus write their books from the perspective of having already reached their grail, after the fact, rather than showing us the dirty confusing embarrassing spectacle of themselves floundering about, flapping about like a fish on shore and in search of oxygen.  Eckhart Tolle wrote his books after his enlightenment, and they’re fine, important books, but how do you relate to a Zen master?

Before the Camino, I had thought about keeping a blog on my journey of separation and divorce in real-time, to illustrate most pungently how a fairly normal person gets through, and to differentiate any related book from all those that show gurus dispensing wisdom in hindsight.  It seemed to me that people don’t benefit from seeing or reading someone tell of their journey once it’s over as much as they would from witnessing the journey itself.  But the Anatomy of a Divorce blog also was not to be.

I also toyed for a while with launching a blog about one of the few things I was , apparently, motivated to do while in New York, which was trying to meet women.  But that idea too has languished, for reasons that need not detain us here.

Happily, for a while in May I had felt like working on “The Novel,” by which I mean the first in a trilogy I conceived of over seven years ago.  I had worked on it peripatetically for about five years, but drifted away from it in 2009, as I spent my time being a senior executive in a start-up, being married, helping my wife run her business, and researching and co-writing a book for several publishers.  I had a brief fling with The Novel during my two weeks in Israel, in May, felt great about it – but arrived back in Bend to reality.  I also lost most of what I had written, after my new hard drive crashed.  This was discouraging, but a drop in the bucket of everything else going on at the time.

And so the writing proceeds very slowly, though it is mostly about the Camino project, which I am tentatively calling Mom and Me, along with some subtitle, perhaps relating to divorce and other cancers.  Could I finish it before the next camino season, say, by May, and get it in Kindle format so pilgrims could take it with them on the Camino?  Could I get enough word-of-mouth and other buzz to sell more than a few copies? We shall see…

In early December, I decided to go to Bend to tie up many of the loose ends that had been grating on me.  But that trip would turn out to be completely different from what I imagined.

 

On Auschwitz and Cancer

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For at least two weeks I have had in mind a post that addresses Mom’s PET scan and the expectations that so many people have about what will happen to her cancer now that she has been on the Camino.  I discern these expectations in what people say to Mom, in her telling me, a week ago, that she felt “pressure”, and in our tribe’s utter inability to stop telling ourselves stories . . .

But for at least two weeks, I have not found myself writing anything.  Why that has been so could justify its own essay.  It wasn’t until I read Mom’s “Cheers and Kindness” post of this morning (about her experience with her friendly townspeople and her wait for the results of the PET scan), and found myself crying at the end, that I began to write this post.  I don’t know where it’s going, but I begin anyway.  “I can’t go on, I’ll go on,” as my master and hero Samuel Beckett once had a nameless character say.

Humans see patterns in everything.  Hypnotize a person (as researchers did in a now famous set of experiments) and tell him to get up from his chair and walk to stand by a window, and when you wake him up and ask him why he is standing by the window, he will say, for example, “There was a cold draft, and I was shutting the window.”  Of course this is not true, but we now know that the brain searches relentlessly for explanations of everything it does not understand or does not wish to grapple with.

Not so long ago, we prayed to the sun to intervene

Just today I opened The New Yorker to read “It was an article of faith among the [Libyan] rebels that Qaddafi had regularly used magic to prop up his long reign.  What other explanation could there be?”  Lacking explanation, man often turns to the supernatural.

Stories are easiest to see in beliefs about politics and religion — two areas that, not coincidentally, wise people know it’s best not to argue about.  That’s because such beliefs are usually not arrived at by reason but by responses to emotion, and it’s pointless to argue with conclusions reached by emotion.  Today I saw one writer’s interpretation of New York City’s shutdown of Occupy Wall Street, as he looked at the site that once housed the 5000 books of the Occupy Wall Street Library:

What a picture it would be . . . of police in riot gear gathering boxes of donated books and loading them into garbage trucks. A perfect metaphor for what appears to be the intention of last night’s raid: destroying the body of knowledge that had been collected by a movement just two months old . . .

If you want to spot tendentious, made-up belief systems, look for words like “appears to be,” as in “the contents of another person’s mind appear to be an intention to destroy knowledge.”  A great many marriages founder on this one powerful impulse, that of imagining we know the meaning in another person’s mind.  All storytelling arises from man’s wrestling with painful sensations of ignorance and uncertainty — which is fear.  The results of this wrestling, this agon, we call myth, religion, fiction, cinema, psychology, ideology, doctrine, dogma.

So we see a woman walk across Spain on (and in) a dream and we

Mom displays good food on the Camino

continue the story.  She has cancer, right?  She wants it to go away, right?  And look at all that bravery, all that effort!  Look what a story so far, with all the blog posts illustrating the triumph of the human spirit!  Why, we’ve even got her in high-definition video!

It’s a story fit for the movies!

What is left behind

Except for one thing, we think:  we don’t have our ending yet.  As the writer of the Gospel of Matthew well knew, adding, as he did, the all-important Resurrection to Mark’s far more abrupt ending*, there can be no meaning without a proper ending.  And the only acceptable ending to this fairytale is, of course, that somehow, in magical ways we don’t need to understand but need to believe in, the walk across Spain – the exercise, the sun, the intention, the bravery, the purpose, God – cured the cancer.  I would guess that nearly every reader of this blog will acknowledge in herself this secret hope, this small buried voice whose sister whispered in my mother’s head as she approached the Cruz de Ferro with the earlier PET scan, with the cancer, she hoped somehow to leave behind.

I don’t need to understand how it can happen, we think, but I would love to see a fairytale ending.  I’d love to see God choose to play a role in this drama and give a woman her just dessert.

This is a way of thinking pilgrims were familiar with a thousand years ago:  surely if I go to all this effort, God will reward me.  The medieval Catholic Church validated this thinking, handing out “indulgences”, in its role as God’s mouthpiece on earth, to people who made some kind of effort – the Camino pilgrims, say, or the people, both wealthy and poor, who got karma credits with God for handing over their money to the Church.

Setting aside the Church’s confusion of money with divine will (and itself with divinity), all of this relies on belief in an intercessionary God — that is, a God who will intercede, or intervene, in human affairs, if we simply do something noticeable enough to catch “His” attention (a God who intervenes in human affairs is nothing if not person-like).

I would like to believe such a God exists, but then if such a God did exist, and either set in motion or stood by and did nothing for the shot, gassed, and hung-by-their-tongues Jews of the Shoah, or the Rwandans, or the victims of Stalin, Mao, and Pol Pot, I would find Him unworthy of the barest worship.  Either he is weak beyond imagining, or he is capable of ending unbearable suffering but lacks all compassion.

It is this God who is said to have died in the concentration camp at Auschwitz, and for people who study history and its lessons there is no resurrecting him.  Can there be a kind of divinity who intervenes in the cancers of mothers who do pilgrimages but ignores the cries of children in gas chambers?  I do not think so.  Not that kind, by that definition.

This is not to say divinity, or a consciousness that pervades the universe, does not exist.  It is only to say that I’m not able to believe there is a person-like entity who intervenes in human affairs.

If Mom’s cancer does not reappear on her PET scan, there are a number of possible reasons for it, from what science now tells us of the power of the human mind (in science’s belated validation of prayer and meditation) to what we know love and purpose can do for the human immune system.

I create meaning and emotion just by inserting an image in a particular place

Love and purpose.  Immune system.  For those who don’t credit an intercessionary God, these are the building blocks of their hope, vague as it may be:  Inge did that amazing walk, such great purpose, we all love her, we hope her cancer goes away now.

I do too.  And I too don’t care how it happens or whether I could ever explain it.  My mind bends toward the romantic and the idealistic as much as the next person’s.

But I have worried since the first moment Mom mentioned doing this trip that it would begin to work on her mind, whispering to her of salvation, giving her a hope — so powerful in the agon with dis-ease — that might turn on her if the outcome to which she had inevitably grown attached did not come about.  I have worried for many months about us measuring the success of the trip, or Mom’s chances of survival, by the same meaningless yardstick, the PET scan of November 14.  (See the end of my post a day before we reached the Cruz de Ferro, when Mom voiced aloud what until then had only been the whispers of going to the cross and leaving her cancer behind).

But the PET scan is meaningless, in the sense that it neither signals an objective truth — someone will or will not die — nor has within it a pre-fabricated storyline of what must happen next — of what it means.  We create the storyline.  Yesterday’s PET scan is just

Another Day on the Camino

another day on the camino, and just as there were days before it that did not speak of life or death, there will now come days after it that are silent on the matter.  The PET scan is just data; we supply the meaning of it.

Mom is powerful precisely because she gets to choose what meaning to assign the PET scan.  Doctors and others will look at a certain scan and say, “This is great!”  They will look at different results and say, “Oh, oh, my, this is unfortunate.”  They are, however, simply speaking from their own, inevitably blinkered, system of belief.

Mom can decide what storyline she will believe in, and as one of my favorite Taoist stories shows, her storyline doesn’t have to grasping for meaning prematurely.

Sometimes a horse is just a horse, of course

There was an old farmer who had worked his land for many years.  One day his horse ran away.  His neighbors heard the news and ran to see him.

“Such bad luck!” they said.

“We’ll see,” said the farmer.

The next day, the horse came back, bringing with it three wild horses.

“How wonderful!” the neighbors said.

“We’ll see,” said the farmer.

The next day, the farmer’s son tried to ride one of the wild horses, was thrown, and broke his leg.

Here came the neighbors.

“What a disaster!” they said, patting the farmer on the back.  “Your fields will rot if he can’t work the farm.”

“We’ll see,” said the farmer.

A day later, the emperor’s army recruiters passed through the village to draft young men into the army.  They saw that the farmer’s son had a broken leg, and they passed him by.

The neighbors, again.

“Such good fortune!” they said.

“We’ll see,” said the farmer.

All this is to say that the Lord moves in ways mysterious, not ways we can divine in our desperate interpretations of this event and that . . . In the absence of knowing, then, what we’ll see, we can

Give it a try -- supply your own caption

only let go of the need to know, which sometimes comes in the form of patience and other times forgiveness, and cultivate those states of mind — love, compassion, positivity — that lead to healing.

The “unfortunate” PET scan of May has unfolded into some of the greatest experiences of Mom’s life, not to mention mine, Carrie’s, and many others’.  Who, then, will claim to know that yesterday’s PET scan can be “bad news”?

That camino continues, and we’ll all be walking with Mom as she walks it.

 

* The original Mark ends with the women fleeing from the empty tomb, and saying “nothing to anyone, because they were afraid.”  (How the writer of Mark knew what they saw when they said nothing to anyone is another story.)  In Mark, there is no Resurrection, and without the decades-later additions of Matthew, Luke, and John, Christianity as we know it would not exist.

Days on the Camino, What I Miss (Part II), and a Secret to Happiness

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Typical Second Breakfast, greatest time of day ever

I’ve been thinking about it a lot, and probably what I have missed most upon my re-entry into the so-called Real World are two keys of the good life:  the simplicity of my days unfolding one day at a time, and a clear sense of purpose.  We are meaning-seeking creatures, and we don’t live by bread alone. We also live by purpose, which is another way of saying meaning.

It had been a long time since my mind was not continually gnawing over the future (or, just as unhappily, the past), but that is how I lived for a month while in Spain.  On the Camino, my mind was rarely occupied by anything farther into the future, or more complicated, than the next meal (prepared by others) and rest break (I was able to handle these on my own).  I had a very clear sense of what I was doing, and why, and I looked forward to each unfolding stage of it.

Days on the Camino

When I woke up in the mornings on the Camino, I didn’t have to sort through options about what to do – one of many types of decision-making tasks that researchers tell us are mentally and physically exhausting.  I also didn’t have to wonder what would happen that day.  I thought, if anything, about First Breakfast.

A croissant or drinkable yogurt, coffee, perhaps jam, fruit.

After First Breakfast, we would begin walking.  Where?  Easy:  just follow the yellow arrows.  As we walked, I would begin slowly to entertain fantasies about Second Breakfast.  The food was often similar to First Breakfast, or at least there was more of it (once, at 9:15a.m. I ate an entire medium pizza).  And about two hours after Second Breakfast, I was pining for First Lunch.  It sounds like a dog’s life, no?  Or a child’s.  This simplicity and living in the moment is part of what Jesus, a famous lover of food and drink and the common table, meant when he exhorted us to be like children.

Marie Anne's wonderful First Dinner in Cizur Menor. Me, Julio, Marie Anne, Carrie

During some of these walking breaks and even while walking, I would whip out my (paper) notebook and take notes, or, if we were in a café or near a boulder with good seating, I might even open my MacBook Air and start writing up notes (one of the reasons I chose my Air was that its Flash drive makes it turn on as fast as a paper notebook, or a cell phone – I just open it up and start using it – with none of the endless waiting and wailing and churning of Windows or of computers with hard drives).

Almost always after my shower in the early afternoon, I would lie on my back on whichever of the 30 beds I slept in while in France, Spain, and Portugal, my MacBook Air on my thighs, the purring of other pilgrims napping all around me, and I would begin transcribing notes from my notebook, then adding other thoughts and uploading the latest photos from our cameras to Facebook, and voila!  A blog post.

But “a blog post” doesn’t really capture what I was doing.  In fact, by writing and sharing my thoughts and adventures for an audience, however small (you know who you are!), I think I was living quite close to my purpose.  I am still refining that; I welcome your ideas.

I have missed that sense of purpose.  It was a slight purpose, getting up every morning to walk, walking, eating, observing, taking notes, reporting what I saw, but it was a very clear purpose, and it seemed, at the time, to be enough.

I miss expressing even my most mundane thoughts on a regular basis, and knowing someone is likely to read it, and almost as likely to be grateful for something in it.  I miss, that is, what people in certain circles might call a “practice”.  Flower-arranging is a practice.  Karate is a practice.  Yoga and meditation are practices.  Prayer and good works are practices.  Anything done mindfully, or with love, or both, puts us in practice of being fully human.

For me, writing must be one of my practices.  If I skip it, it’s like skipping exercise:  I can’t be fully happy.

Movement

I have missed the sense of freedom that comes with moving my body in healthy ways – freedom, say, from worries about gaining weight because I can eat as much or as little as I want to.  (My Camino pants are still quite big on me).  I’ve felt this liberation before, and I want to keep exercising so as to hold onto it.  Now:  how to do that in this urban wilderness that surrounds me?

Yesterday, I sort of stumbled on creating a day that felt a bit like the Camino:  it began when I walked over a mile to yoga.  Did yoga.  I then walked over three miles on trips to the bank, to Karma Café for an Indian lunch, and along the Jersey City waterfront walkway, reminding myself now and then to look up and appreciate that a short distance away, over the Hudson River on which Captain Sully crash-landed his plane, rose the concrete mountains of one of the greatest cities the world has ever known.  Then I stopped in a Starbucks to take notes and drink my first cold chai in six weeks, and continued to a federal building to pay the last of my 2009 and 2010 taxes.

Perceptions of Time 

After the sobbing at the tax office had subsided and I had gotten hold of myself, I saw that the next light-rail to Jersey City’s Heights left Pavonia-Newport in 24 minutes, and I did something absurd:  I decided instead to walk nearly three miles back to the apartment.  I remember Julio saying that his impression of Americans was that we would drive from the living room to the bathroom.  (Julio walks 250-300 days a year, sometimes across entire countries, or in Himalayas, and so on).  This 5K was for you, Julio!

Julio and I at, or after, First Dinner

I’m not disinclined to walk places anymore, because I’m not afraid of the discomfort of spending time so inefficiently.  That’s a big change.  It’s only partly a physical laziness that makes us drive.  Much of the reason we drive is because we are uncomfortable with the feeling we get when we do something inefficient, like walking, and then tell ourselves the following story:  I’m wasting my time.

This one story is a cause of much misery in modern life.

I was looking at Manhattan from Jersey City’s Heights the other

Under an hour, right, Julio?

morning and sized up the actual distance.  Based on my newfound experience in assessing how far away a village is and how long it will take to get there, I figured I could walk to Manhattan in under an hour, if there were a walking bridge.  It’s a shame there isn’t.  New Jerseyites are entirely denied the pleasure of walking into one of the world’s great cities.  They must either drive through a serpentine urban jungle, including underground, or dive underground with hundreds of other people in public transportation.

What I Miss, Part II

In a proof of the mathematical equation that says the grass is always greener, I offer the essay below as contrasted with what I said I missed just a few weeks ago while in rural Spain…

I miss other things.  Both of my cars are in Oregon.  One, the Land Rover, the World’s Most Expensive Ski Accessory, I want to sell.  Or to detonate, after first putting my HTC My Touch Android phone inside it.  The other, my BMW M3, I miss like my own child. I am reduced to public transportation here, or driving Adam’s Volvo, which is like driving an iceberg, or a continental shelf.

I miss a world in which a guilt-free nap is actually plausible.  Not that much has changed for me . . .  Of course, I don’t really need them anymore, since no one dares wake me up at oh-god-thirty.

I miss having feeling on two (or is it three?) of my right toes.  They still feel kind of tingly, if not entirely numb, just as they often did while walking in the Five Fingers.  And that was before I — “stubbed” doesn’t quite capture the crushing impact they made with a rock — on the trail.

I miss that on the Camino there was nothing more that could be done, with the result that I didn’t worry any part of the day about whether I could be doing more – a hallmark of the over-achiever, of the unhappy person.  Instead, for the first time in a very long time, I was doing all I could do – or all I was choosing to believe I needed to do.

In the Pyrenees

I know there is a secret recipe for happiness in that.

How Did the Camino Change Me?

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Everyone seems to want to know:  How did the Camino change you?

So far, I have had a few surprises upon my re-entry to the Ordinary World.  And that’s not even counting the fact that I recently bought a fresh red pepper for the first time in my life, and ate it, and enjoyed it.  In fact, I find that my appetite for healthy food has increased.

The First Surprise

During the walk across Spain, I longed for a good yoga stretch.  I’d grown so fond of my yoga classes over the last year and more that I really missed yoga while on the road.  On the road I was sure I’d never needed yoga more; after all, I was walking thirteen or more miles a day, with all that means for the legs and back, and I was carrying a pack, with all that means for the back and neck.  I imagined myself a stiff mass of bunched-up muscle and ligament.

So I was very excited to get to my first yoga class in about six weeks, in uptown Hoboken’s Devotion Yoga studio.

What I found surprised me.  Far from being rusty and out of

Balancing in Montauk, New York

practice, I was more balanced.  I could easily get into and hold balance poses that had been more difficult before the Camino.  As I flipped up into a crow pose and held it easily, I felt as if an Olympic gymnast had just taken over my body.

I may have even been more flexible, or unstuck, in other poses that I had never been able to do well — the upside-down wheel, for example, which something in my neck — the knots? — had always made difficult.  But here I was in the most complete wheel I’d ever done, as if my (tight, burdened?) shoulders had at last gotten out of the way.

Experienced yogis will say that the mat is a microcosm of life.  On the mat, you practice being comfortable with discomfort, you practice slowing your thoughts and (I think relatedly) your balance, and you practice being kind to yourself rather than abrupt or forcing.  You also practice concentration.  And all of these things will be directly reflected in your life off the mat.

But in my yoga class, I was finding that what I had done off the mat was affecting the yoga!  I was more mentally, emotionally, and physically balanced.  I may have also been more flexible, less tight.

I had already sensed that I did successfully slow down my thoughts on the Camino, and that I had fewer negative thoughts and emotions, but these things are hard to measure.  The yoga class was, happily, more objective – like stepping on a scale that measures How the Camino Changed Me.  You either fall over where you used to fall over, and struggle where you used to struggle – or you don’t.  And I wasn’t.

And because balance is a reflection of clarity of mind, I think my yoga session confirmed for me that I had somehow reached my goal of slowing down my mind, and with it, the negative thoughts that make for negative feeling.  With the mind racing less, the body can be still; with the mind less mired in anxiety, your body can be calm.  And you can balance yourself in ways you previously couldn’t.

What Caused These Changes?

So the question we need to be asking ourselves is this:  what was it about the last five weeks that put me into such a state of balance? The food?  Certainly not.  The sun?  There are many variables, of course, but here are the ones that I would hypothesize:  the meditativeness of walking; the exercise (and, yes, the sun, a known mood enhancer or anti-depressant); and the sense of purpose.  It’s this last, the sense of purpose, that interests me most.  Because what I want to do now is replicate it in my “real” life.

I want to figure out what I was doing on the Camino that can be brought back with me.  Because if I can’t do that, then a great deal of the value of the experience will be lost to me.

An Unfolding Surprise

While I was on the Camino, I wondered what it would be like to be off it.  Would I be, as Marie Anne always is after the end of a long walk, sad?  I wrote about this from Portugal, after we were done.  At the time, I did not feel sadness about being done.

But then, I wasn’t done.

Simply finishing the Camino did not mean I was done with what I call the Special World.  During our several days in Portugal, I was still away from my Ordinary World.  And so any reaction to the real world would have to wait.

Now that I’m back in the temporary life I was in just before I left for Spain – cooling my heels in and around New York — I’m starting to feel that reaction.

At the post office a few days ago I underwent a petty frustration, and by the time I got back into the car I almost had tears in my eyes.  Back at the apartment, I felt tears come up — frustration, I think, a kind of sadness that I had lost something, or perhaps a fear that I would not be able to find it again.  On the Camino I had felt an occasional annoyance and even anger, but I didn’t feel the kind of existential sadness I recognized early in the week.

I found myself resisting this, and then I found myself saying, Stop resisting.

The next day was different yet again.  I felt no sadness at all.  But I still felt some of what Mom wrapped up well earlier today, on the phone, after I’d said the return to the real world was sometimes a bit disorienting: “Yes, I know!  I don’t know what to do with myself!” she said.  “I walked to the post office, I made a salad and ate fruits again, I did the leaves, I went grocery shopping . . . My body is revved up and ready to go.”

I realize that there is a particular journey that is still going on, one that is not done yet.  I have been telling myself not to develop expectations of what I must be doing now that I am back.  I have been telling myself to stay on the Way – which unfolds only a day at a time.

So this is the challenge I have set myself (a hopeless type-A, I often do better if I call something a challenge):  to come to understand what it was about the Camino experience that made me feel less bad, less often, and made me feel very good, very often, and then to make sure my life after the Camino is designed as similarly as possible.

In the next post, I’ll talk about what I miss from the Camino.  And that may lead me closer to understanding what I had there that I must create here.

Just When You Thought It Was Over: Portugal

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City of Port

If you learn nothing else from this post, you will remember that Porto, also called Oporto (“O” being the Portuguese “the”) in both English and “Portuguese” (explanation of quotes below), is the second-largest city in Portugal and the origin of Port wine.

I knew the latter even before we took a tour of an award-winning port wine maker clustered on the river with dozens of its peers. I learned, from our Botswana-born guide, that the makers prefer French and American oak for their barrels, that port is made by interrupting the fermentation process with a heavy infusion of grape alcohol, and that the ruby and tawny ports I often see are the two middle rungs of port wine, with vintage being the newest and least expensive, and reserves, running from 20 to over 40 years old, being the oldest and most expensive.

We sat down at a sawed-off barrel with a Dutch couple and began tasting. I don’t think I’d ever had white port wine before; they offered a dry one and a sweet one, both very good. I tried a 20-year-old reserve, and bought a sweet medium-red tawny.

Who will give me an excuse to open it? Please complete your application in the Comments section of the blog. Especially interesting applications may be emailed in confidence.

The drive from Galicia took about three-and-a-quarter hours, and was a continuation of the beautiful, green, hilly country we’d seen in Spain, but it looked better maintained. It was hazy all day, for the entire distance we covered.

I’m sure Porto has culture, and in the distance I’m pretty sure I saw churches and palaces and whatnot, but my interest was focused like a laser beam on (1) doing nothing and (2) finding civilian clothes. For a month I have worn two shirts, two socks, two pairs of underwear – I was like the Noah’s Ark of hiking gear. I discovered in Porto that I had an inner metrosexual, and he wanted to come out.

We pretty much accomplished all these goals on the Via Catarina, a long, narrow, pedestrian shopping street, and during a few visits to the Majestic Café, a carved-wood-and-mirror Nouveau Art creation in which I could imagine Hemingway, its contemporary when it opened in 1923, sitting down to write. They are so proud of being able to cook a proper spaghetti Bolognese – which is to say about half as good as Mom’s – that they will take from you about $17 for a bowl the size of an appetizer dish. But they will speak English to you, like many Portuguese seem to do – they even seem to prefer it to Spanish.

Portugal lives in the shadow of Spain, its much larger, more populous, less poor country, and so to carve out their own distinct identity, the Portuguese have sort of agreed they will speak Spanish with a Russian accent. This they call “Portuguese”.

Things get really confusing when you hear a Russian immigrant speak “Portuguese”, or when you ask a Portuguese if he or she would prefer that you speak English or Spanish. “English,” they always say. This is because saying “Spanish” would simply reveal their secret: they are already speaking Spanish, just with a heavy Slavic accent.

The notion of customer service was stronger in Porto than on the Camino. Our first interaction was with the proprietor of a café-bar who (it would not be too much to say) hurdled over the counter to come and translate his menu for us. Everywhere we went, people were very friendly and accommodating.

Kudos especially to the woman who harvested an entire wall of its

No dummies were hurt in this demonstration

sweaters, and even brutally amputated a mannequin, in an attempt to get me to buy a sweater; the friendly young man at Zara who worked his mic like Madonna and who professed not to believe that I had never, as I told him, been as cool as he was, and therefore could not wear some of the items he was suggesting to me; and the salesman at Massimo Dutti, which I have decided is superior to Zara for men over 35, for lightening my wallet more than all the others combined.

I took care to hold on to my receipts, though. Taxes on clothes make up a whopping 23% of the listed price, but the foreigner can get back 19% at the airport. This helps a lot when you’re contemplating a 220-Euro winter coat at Massimo Dutti. Curiously, there is a minimum purchase of about 60 Euros, as if the authorities (in Portugal and elsewhere, actually) don’t want to administrative overhead of dealing with small receipts. But this creates a disincentive to buy single articles from smaller, mom-and-pop merchants, and likely benefits mostly the department stores and expensive retailers.

Many of the churches in Porto look as if they were built from the French Country section of Pottery Barn, being faced with a combination of somewhat grimy stonework that frames large, eye-catching expanses of blue-and-white Delph tiles depicting Biblical stories.

We took a double-decker bus around town. Mom on the bus ride along the ocean reminded me of a little girl, which is another way of saying that she’s able to be open and present to things as if she’s never seen them before. Ohhh! Look at that! It’s crashing! Do you hear it! I’ve got to catch that! It was amazing. I felt so stick-in-the-mud. We got off the tour bus on the avenue of port wine makers. “When will the bus return here?” I asked. “One hour,” the woman said firmly.

Fifty minutes later it paused briefly at the bus stop, a block away from us, and left without us.

For dinner that night I decided to try bacalao, or cod, which I’d had once in Spain, but which is considered a national dish in Portugal. Probably I should have waited until we were in a finer restaurant. Though I ordered it “grilled,” there was so much oil on my plate I could have run my BMW on it. I literally spooned it like soup. The fish itself, as prepared, was nothing to write a blog home about.

Lisbon

In Lisbon yesterday we began with a series of small disasters. The tourist office called about five hotels but all were booked. No problem: I’d look them up on the Internet. Then I discovered that after about 30 straight days of remembering to pack all of my electronics gear every day, I’d left behind my MacBook Air’s power cord. I’d used the battery on the bus, and it was almost dead. My Vodafone USB stick has been done for since Saturday.

We dealt with these setbacks by having lunch at the Hard Rock Cafe. Carrie was in heaven. Mom loved her salad. The mac and cheese was pretty good. Afterward, we marched into a Starbucks that’s surely located in one of the most beautiful buildings for any Starbucks, and I madly tried to book a hotel on any of Priceline, Travelocity, or Venere. My power reached 2% and I booked a place called Caza Latina. We jumped in a cab and drove uptown to the address.

There was no sign. “This is a hotel?” I asked the driver. He shrugged, pointing out that he’d just brought us to the desired address. Obvious locals sat around at some tables at the joint next door. They told me, I thought, that it was a hotel. I then saw the “Latina” plate next to the buzzer marked #1. I buzzed. And buzzed. No one. I buzzed one marked “Porto” and this brought forth an angry charging dog dressed as an old Portuguese woman. By this time I was cursing with her. I established that she was not with the hotel, and though she was not done with her rant, I said goodbye to her and walked up the stairs. No sign. Nothing indicating a hotel or any commercial establishment. No open doors. Nobody.

On the sidewalk we considered our options. Finally we hailed another cab to take us to an Internet café whose address (like an Apple reseller’s) I’d looked up while in Starbucks. A miscommunication delivered us to the Apple reseller instead. He had no more power cords. But he was very generous: he said I could charge up and use the wi-fi. He also pointed out the coffee. Wow.

On Prieline, I found a two-star hotel near the Apolonia metro station. The rooms had single beds of the sort you’d see in the army, if you were in the army in one of Portugal’s former African colonies. A sign warned against “eating or drinking in the room”, but the presence of an unwalled sink and bidet added, “but do feel free, out in the open, to wash your ass”. The manager was extremely helpful in calling the hotel in Porto and having them ship my power cord.

Then we headed out for the ocean, two blocks away, but we were stymied because the ocean, it seemed, had been fenced off. For miles and miles.  Never seen anything like it.  So we went to an Indian restaurant, opened the place up (at 6:30), and had a fantastic meal. We were the only patrons, and it wasn’t just that restaurant: block after block, restaurant tables were empty.

I asked Mom and Carrie what felt different or what they missed now that the Camino was over. “I miss Julio!” Carrie said. Mom said, “I miss Julio’s encouragement, and I miss Marie Anne’s laughter. I also miss walking a little every day.”

I will write more later about our dawning realization that we have left what screenwriters call the Special World.  We bring, I suppose, the precious elixir from our journey back to the Ordinary World.  But we also know that the other reality is now imminent.