Monday, February 25, 2013

One of the reasons why I put up with the conundrums of university administration is because, if I allow myself, I can still be a student.  Each semester I read the works assigned in one of the courses being taught in the Master of Liberal Studies which I direct.  My job entails being up to speed on the curriculum in my program, I rationalize, never having really gotten over feeling that learning from the astonishing scholarship around me in the hallways is a guilty pleasure.  I’d go to class every week, if I could, but I make the students nervous.  (They’re fine if I show up once a semester, and all the better if I show up with food.  They also know I always fall for the line, “Dean Kamei, you haven’t baked us a chocolate cake in a while.”)

Over the MLS years, I’ve read some classics that I’ve skirted around: Oedipus Rex, translated excerpts of Tales of the Genji, O Pioneer!, The Stranger.  I’ve filled in more Jane Austen and Shakespeare.  Like the concert on the subscription series that forces ears into unknown territory, this reading discipline forced before me Luigi Pirandello and Tom Stoppard.  Actually, I was glad to finally get around to Stoppard’s play Rosencrantz and Guildenstern Are Dead, common fare in humanities courses, although it was his Arcadia which really got me.

The work which has “gotten” me this semester so far is David Mitchell’s Cloud Atlas.  I haven’t seen the movie, and now am not sure I want to, because the mesmerizing aspect is his writing.  I’m in awed admiration of those whose who can hone and deliver on their own literary voice; to “nest” six stories together, each with a distinctive voice, has blown me away.  I figure I’m in good company, as Dave Eggers is quoted as saying this book is “one of those how-the-[blankety blank]-did-he-do-it? modern classics.”  Cloud Atlas is part of a fictional work line-up gathered together in one MLS course to analyze the rationale for reading and writing. 

Maybe if I were David Mitchell, I’d have an astonishing clever way of weaving together six of the many stories which have consumed my January and February.  But like any one of my MLS students contemplating a thesis topic, the more there is to say, the more overwhelming it feels to say it.  The good things going on in Akemi's life, contemplating ten years without Bing, the shifting sands of higher education, attempting to keep safe and secure This Old House, rendering ward choir successes with those untrained yet willing, spending four-and-a-half hours total with AT&T to sort out multiple phone plans. . .there, I dare anyone to nest together those six stories. 

But mostly over the past couple of months, I’ve been in a conundrum about this blog, my rationale for writing it, and whether I deliver on your rationale for reading it.  As my lymphoma marker has continued to slowly, but steadily, drop, I’ve moved beyond thinking of myself most days as the Cancer Patient.  Yet I have to accept, and still quite haven’t, that I can’t escape the need for some kind of ongoing treatment, at least until my heroes in science and medicine come up with some gene therapy.  I’ve been motivated to capture the family stories while I can write them down, but now that I feel better, I’m more motivated to live life while I can.  I've tried to stop thinking of more sleep and rest as being the equivalent of doing less, and that has meant going to bed instead of writing here (witness right now it is 11:55 p.m.).  This blog has been my companion, and yet, as with any relationship, it’s a companion who needs quality time, thought, and care.  

But I'm regrouping.  Tomorrow is my 25th treatment.  Who could have imagined?  Certainly not I, when all this started in August 2010.   Okay, let's look at what's good about 25 treatments: the 24 treatments have worked, and that I'm still here to be having treatments.  

Tomorrow I'll take to the hospital with me another book from the MLS course syllabus to read.  I promise to have more to write.  

Wednesday, January 2, 2013

The pre-Christmas calendar got too congested for what has become our annual elaborate cookie decorating party (the decorating is elaborate, not the party), so Akemi and I moved on to new year’s preparation instead.  On the day after Christmas, we hosted for the first time our own mochitsuki – the making of the rice cakes served as the traditional first meal on New Year’s Day.

When we were in Anaheim for Christmas eve, we got my dad’s mochi-maker out of the Peralta Hills garage. My dad loved this machine.  It looks like an over-sized rice cooker, which, actually, it is.  It’s quite amazing: it steams the rice, just like a rice cooker, and then moves into a mode that is a combination food processor and mixer as it grinds and beats the steamed rice into a smooth paste.  No more bicep-building hefting of wet rice into big steamers.  No more jerry-rigged meat-grinders engineered by my dad and his brother.  My dad was happy to leave my childhood memories behind for the wonders of modern convenience.

When we pulled out the English translation of the instructions, I saw that my dad had written in the conversion from kilograms for the equivalent of five pounds of rice and the calculation of the necessary amount of water: 545 ml, to be precise.  “Aw, Grandpa,” said Akemi.  How like my dad.  I left it to a Harvard chemistry major, a Harvard computer science major, and a Tufts human factors major to carry out the assembly and machine operation.  We were encouraged when that heart-warming smell of steamed rice began to waft through the kitchen.

We sat around to mostly, literally, watch a pot boil, until I pronounced the rice “smooth enough.”  I tried to channel my Auntie Emi, who usually held the place of honor at the extended Kamei clan mochitsuki to push the hot rice into a long loaf and cut it into small pieces for everyone standing around the table to mold into little cakes.  The an paste came out of a can instead of being homemade, and many of the cakes were a little wrinkly instead of being glossy smooth, but our guests got the idea.  What we lacked in style points, we made up for in a good time.

In another break from tradition, we did not wait for New Year’s Day to eat our mochi, serving ozoni up immediately for our guest participants.  My mom’s family, the city folks, prepared clear soup, while my dad’s family, the country folks, always put miso in theirs.  In a concession to the Kameis, my mom since her marriage had made ozoni with miso, so that’s the way we know it. 

Since Akemi and I got a jump on our new year’s meal, yesterday for New Year’s Day at my mother’s home we went straight for the sushi.  We noshed our way through an afternoon of Stanford hanging on to win the Rose Bowl, chess games, and Uno.

2012 turned out surprisingly well, much better than I could have anticipated.  I always eat an odd number of kuromame – sweet black soy beans – for good luck, and this year ate a generous amount for an especially auspicious 2013.  Happy new year!

Thursday, December 27, 2012

Akemi shot me a nervous glance; I knew what she was thinking.  The host of last Saturday night’s Christmas party was going around the room asking everyone to share their favorite Christmas memories.  She and I were in wordless agreement that we hoped he would stop before getting to us.

Certainly we have happy memories of Christmases past.  When put on the spot, we coughed up a couple: me listening to the Dickens carolers at the end of my Christmas Day shift at Disneyland, Akemi listening to her Walkman as we drove Christmas mornings from my family in Anaheim to Bing’s family in Palo Alto.

But Christmas took an irreparable hit exactly ten years ago, and we have been in recovery mode ever since.  I didn’t know it at the time, but Christmas eve 2002 was the last “normal” time I spent with Bing.  I was trying to get him transferred from Huntington Hospital to the City of Hope, but processes were slowing down for the holidays.  I thought Akemi was better off being in Peralta Hills with my family, but I found out much later what a traumatic time she had there, subjected to everyone else’s realizations that Bing was dying.

That Christmas eve night, Randy Huff came by his Huntington Hospital room and we watched “The Sound of Music” on TV.  After Randy left, I knew there was so much Bing and I needed to talk about, but neither of us could.  The next morning, I could tell the impairment to his central nervous system was worse, and from then on, we really weren’t able to have a conversation.  Chris Wong had kindly brought us a Christmas tree and so many others were beside themselves trying to do nice things, but there was no room in the inn for us that year.

As hard as that Christmas was, Akemi and I were to discover that Christmas 2003 would be even harder.   We could not escape the painful reliving of his last days, and could not bear to do the “normal” thing of being with either my family or his.  When Wendy and Craig offered that we spend Christmas with them in Cayucos, we jumped at the invitation.

The first thing Akemi said as we got into our car on our way home from the Saturday night Christmas dinner was that the “best” Christmas was that one in Cayucos, although she couldn’t share that.  I understood, and agreed.  It wasn’t the happiest Christmas for us, clearly, but maybe it was the most meaningful, in that we were given as much of a chance as possible to heal that first Christmas after, and a start to reconciling our sorrow with what should be a time of joy.

I can see that with each Christmas since then, our hearts have become a little less heavy, and the memories of Christmas 2002 a little less painful.  With each Christmas, I have been more willing to be back in the “Christmas spirit,” that is, until last Christmas, when I was feeling so awful.  So as we “wrap” this year’s Christmas, I’m agreeing with Akemi that this has been the “best Christmas ever.”  We have my health mostly regained, and my job retained (at least thus far) through a dean transition.  We have affirmation of love and support from many.  We had a ward Christmas program with music that was described as “epic” and moved the congregation to tears.  We even have heat and cabinet space in the bathroom, and Stanford in the Rose Bowl.  Ten years later, I can say that the joy of the here-and-now finally has overcome grief-filled past.

P.S. This cross-stitched stocking took me a couple of years to finish for Akemi, but I’m so glad I did – I don’t have the eyesight for it now! 

Friday, December 14, 2012

My ace contractor Dave and his team have my master bath remodel on final approach.  The cabinets are getting stained today, and the final installations – countertop, mirror, shower glass, fixtures – are intricately choreographed for Monday and Tuesday.  The guys are taking the goal of having the bathroom “presentation ready” by the time Akemi arrives home from Boston Tuesday night very seriously.

The history behind the almost-joke started when Akemi, a junior high-schooler, came home from a two-week summer orchestra program at Idyllwild to me undertaking a cosmetic up-do of the guest bathroom.  (For those of you who have asked what my next project is, it is the real re-do of that bathroom, although this will not be nearly extensive as this master bath project.)  “I go away and look what got into my mother,” was the gist of her reaction. 

Then a couple of years later, she came home from a long, demanding summer at the Cleveland Institute of Music’s famous Encore program to the kitchen and “big room” completely torn up.  Eager for home-cooked meals after her first exposure to “mystery” dorm food and the Midwest version of Asian and Mexican cuisine, we closed out that summer to her dismay with paper plates, Trader Joe’s, and the toaster oven and microwave on the bathroom counter.

So when Akemi heard that even with a late October start, it would be “no problem” that she would come home for winter break to a new bathroom, she scoffed.  After all, she did grow up with me operating in the real estate development world and her dad being known for taking years to finish a home project.  But as she has maintained her skepticism, Dave and Fred have maintained their sense of contractor’s honor that this will be done on time.  We’ve called a few audibles along the way to keep things on schedule, and truth be told, the Plan Bs have been better than the Plan As. 

Last week, I admit, was not ideal scheduling, to deal with the combination of treatment aftermath, drywall dust, and primer fumes.  I ended up spending more time in the office than I otherwise would have, because there wasn’t much point in being at home with all the construction commotion going on.

 I may not be moved into all the luxurious amount of new cabinet space when I return home with Akemi from LAX next Tuesday night, but this scene with the hole in the ceiling from a burst pipe repair, the rusted sink, and non-functioning toilet of the old bathroom now receding into the past to be added to the family folklore.  Some finish work might be underway while Akemi’s plane is on final approach, but everything is going to be looking very good by then.  Film at 11 for her reaction. 

Wednesday, December 5, 2012

It’s 4 am, and I haven't been able to sleep because the steroids they give me to help the IV keeps me awake the first night.  Other patients on the WM talk-list have written about their experiences with the time-altering effects of treatments, especially as they wreck havoc with sleep patterns the first few days.

Susan Gubar’s November 20^th New York Times essay entitled “With Cancer, a Different Rhythm to Life” struck many chords with me.  Gubar, a distinguished emeriti professor of English and ovarian cancer patient, reflects on “the oddity of cancer temporality.”’ She writes, “Every facet of cancer and its treatments transforms times.”  Into year three, I couldn’t agree more.

As I finish a treatment and schedule my next appointment, I think, “A three-month reprieve!” Plenty of time to live life to its fullest, and, of course, that time flies by.  All too soon Barbara is arranging my hospital rides.  All too soon I’m fending off encroachments on my work calendar, as the assistants of other deans ignore the holds I’ve placed on treatment and post-treatment days.  All too soon I’m activating my “prep plan,” so familiar now I operate by memory: pack the hospital bag, stock the frig with soups and juices; clean the house so I’m not tempted to get up and vacuum when I should be resting.  Hey, at least I know myself.

But at the hospital, time seems to slow down.  Gubar nails this when she refers to the interminable tick-tock of waiting, “especially when you are anxiously waiting for test results.”  When we were on this roller coaster with Bing, I tried to tell myself that we can’t live by test results, but that was, and is, futile.  It’s as if you’re going into a play-off game with a celebration standing by off-field in anticipation of a victory.  Everyone hopes for a cause to celebrate and no one wants to contemplate the possibility of defeat. 

I usually get the immunology report from the nurses by mid-day; today Dr. Weitz delivered the good news of another drop, right on the downward trend line.  She was very happy, and so am I.  Every drop in the IgM count is a victory of more time, yet that is tempered by the unpredictability of the unknown.  With the benefit comes the cost, the continual degradation of my immune system, evidenced by the concomitant continual drop in the “good” immunoglobulins and white cells.  The docs remind me that I must skate along one serious infection away from catastrophe.   

I live with the realization that, if this protocol hadn’t kicked in, by now I could have been serious ill, perhaps dying, or even dead.  I live grateful for medical and spiritual advice, a job with excellent health insurance and a national cancer institute in its plan, and ever-ready helpful friends.  Like Gubar, I doubt I will ever escape the feeling of living on borrowed time, “that numinous period beyond the predicted end, like a stay of execution, which must be fraught with its own blessings and curses.” 

Time again to try to sleep, or at least nap.

P.S.  This statue is “The Spirit of Life” by Daniel Chester French is in Congress Park, designed by my urban planning hero Frederick Law Olsted in Saratoga Springs, New York.  The area’s famous natural spring water feeds the streams and this and other fountains in the park.  I was there for last year’s AGLSP conference.