Friday, December 31, 2010

Friday, December 31, 2010

Our young friend Rachel came over to practice performing her upcoming violin recital piece on us. Akemi and I were impressed that she already is so prepared for her mid-January performance date. We were especially delighted to experience her recent progress, as she is playing far beyond her first-grade years.

Seeing Rachel’s music book from the same series Akemi studied from made Akemi nostalgic for her own childhood pieces and the good ole Colburn days. Boy, Akemi thought those pieces were hard and her Colburn schedule demanding. Her repertoire with Mr. Buswell, the standards in the New England Conservatory violin program, and the juggle with her Tufts program have made the intensity of the Colburn-Poly years seem like a cakewalk.

After Rachel and her mother Annette left, Akemi came into my room clutching her old volume and said words which were music to my ears: “Mommy, come play with me.” Since there’s no way I could sight read these rusty days the orchestral reductions and other piano parts to Akemi’s NEC repertoire, getting to play with her is a rare treat indeed. We thoroughly enjoyed reading through some of her old festival and recital pieces, until she needed to return her energy to practicing some of her current assignments: the impossibly difficult second Prokovieff concerto, the c-minor Grieg sonate, Op. 45, and Wieniawski etudes and caprices.

Our little trip down the musical memory lane was a very helpful exercise in perspective. As great as Akemi has sounded at every stage, revisiting her childhood greatest hits with NEC ability gave us both the chance to appreciate how far she has come and how much she has improved. As a parent, I’m proudest of her hard, hard work and for the integrity and character she has developed in her musicianship. As I listen to her practice this holiday break, I am gratified for having devoted every minute, spent every penny, and traveled every mile over 15 years and counting.

On this New Year’s eve, I’m applying perspective to other areas of my life. It was at last year’s Christmas eve dinner that I told my brother John my hematologist was raising the possibility of Waldenstrom’s, but that was just supposed to be the worst case scenario. Just like Akemi making the leap from the Accolay concerto to the second Prokovieff – who would have thought?

This blog hasn’t just been about “the big C” because I am not going to allow my life to be just about “the big C.” I’m toasting many good things which also have happened in 2010, and I am looking forward to many good things on deck for 2011. So as you raise your glass, be it filled with Martinellis’ or Veuve Cliquot, please know I also raise my glass in acknowledgment of the happiness, love, comfort, encouragement, companionship, and fun you share with me. Happy new year!

Saturday, December 25, 2010

Saturday, December 25, 2010

Thirteen of us went out caroling tonight. Rain had started to fall as we launched into “Hark the Herald Angels Sing” outside of Mary’s door. She joined in with us as we sang “O Come All Ye Faithful” and was visibly cheered and appreciative as we waved our goodnights after “Silent Night.”

Sharing a bond through hymns of our Savior’s birth on a drizzly Christmas night brought back feelings of one evening years ago which I continue to hold dearly. In college I worked as a tour guide at Disneyland, and as seasonal workers (“cast members,” in Disney parlance), we were asked to work either Christmas Day or New Years Day. Most others wanted Christmas Day off. But since my family is non-religious and my mother cared much more about us being home for New Years Day (see yesterday’s post), I usually made my supervisor happy by opting to work on Christmas Day. I actually was always happy to work Christmas Day and found it to be my favorite day of the year at work.

Walking onstage early in the morning before the park opened, Main Street looked like a little turn-of-the-century town waking up. The street sweepers in all-white ice cream suits were pushing remaining water on the sidewalks with big brooms while the clerks in Gibson Girl outfits and woolen capes were rolling up window shades. The Dickens quartet was rehearsing their carols and warming up to greet the opening hour crowd. Hissing and billowing, the steam train was ready to start circling the park. I loved taking in all the preparatory activity and walking by and around the towering Christmas tree, drinking in the sight of the decorations and smell of pine, as I crossed Town Square on my way to report for “line up” at the tour gardens.

The guests who came to Disneyland on Christmas Day usually were families who saved for the special treat to celebrate Christmas that year. They were without exception cheerful and grateful that we were working so they could have their holiday at Disneyland. Believe me, usually guests were not that pleasant.

This one Christmas night in particular when I ended up working late. Sometimes after returning from leading a tour, we were asked if we wanted to stay and answer the information phones: “What are your hours?” “What time is the parade?” “How much is parking?” Most other guides did not want to answer the phones, but I was always willing to make a few more dollars by working as many hours as possible.

By the time I reached the end of my shift, that night had become cold and misty, and the park had emptied out. As I came out from the tour guide office next to the City Hall and started walking towards the nearest “cast entrance” to the backstage area by “Mr. Lincoln,” I saw the Dickens carolers standing silently in front of the Emporium, without a guest in sight. When they saw me, the only person on Main Street, they immediately glanced at each other and launched into a carol. And another. And another. I stood there while they sang to me, and for me, their one-person audience. I forgot about being tired and hungry and cold, until at last they started to move towards their entrance, behind the fire station, with waves of their hands, while I carried on to mine, waving back, realizing again how tired and hungry and cold I was.

The warmth of that connection with other cast members in the winter’s mist has stayed with me for over 30 years. I will add to that the memories of tonight’s Christmas caroling with Akemi and good friends, touching Mary’s hands through the glass of her front door as I wished her a merry Christmas, and feeling again the power of what can be done to uplift the spirits of just one other. For after all, isn’t that part of what His example for us is about?

Friday, December 24, 2010

Friday, December 24, 2010

The stateside Kameis (my brother Bob resides in Singapore) are about to gather tonight at my brother John’s for our annual Christmas Eve dinner and gift exchange. That my family always has celebrated Christmas on December 24th instead of the 25th has nothing to do with Christmas, and everything to do with January 1st, which is Japanese New Years.

A very important Japanese tradition is that your first meal of the new year must be “ozoni” in order to insure happiness throughout the year. Ozoni is a seaweed-flavored soup with “mochi,” which is, well, rice pounded into small disks. Hang with me, here; for centuries my people have taken this very seriously.

The preparation of mochi is its own tradition called “mochitsuki.” Mochitsuki is a special time when family and friends gather for everyone to pitch in and help make mochi. My dad’s six brothers and sisters either stayed in farming or worked in produce, married into families who also stayed in farming or produce, or were landscape gardeners. The only day they could all reliably count on not working was Christmas Day, so that was the day the Kameis all met at my Auntie Kay’s house for mochitsuki.

In the heyday, we were making mochi out of 700 pounds of rice because each family was in turn giving away mochi to their extended family and friends. This meant soaking the rice in several large buckets in advance. My dad drove our rice to my aunt’s home the day before. Early early Christmas morning my parents packed our car to the brim. Somehow we all were shoehorned in a sedan with my mom’s potluck contribution, presents, and all our mochi gear, and we made the drive from Anaheim to West LA.

Over the years my dad and uncles built an area in the Nakamura backyard especially for mochitsuki with an outdoor fireplace, an overhead covering to keep us dry in the rain, and electrical and gas outlets to be able to steam and grind the rice. My dad the engineer configured a meat grinder to make mochi the modern way, not pounding it with mallets the way they did it when my parents were growing up. All the men handled the hot rice, and all the women lined up with mochiko flour on the table and hands ready to mold the blistering hot rice into smooth little patties. One aunt and her sister-in-law were considered the most experienced and took turns standing in the place of honor at the head of the table to “cut” the steamed rice into just the right chunks for molding. There is a definite technique to making beautiful mochi, and the best examples were admired throughout the day.

The older cousins had the job of packaging the cooled mochi in wax paper and transporting them into the house to have ready for families to take home. I gradually worked my way up from the packaging line to the mochi table to be allowed to make mochi myself. It was a badge of honor to end up the day with palms red from handling the hot rice. The last batches were filled with “an,” or sweet bean paste, still my favorite.

By mid-afternoon, after the last batch of rice had made its way through the mochi transformation and while the men turned to clean-up and take-down, the women migrated into the kitchen to put out the end-all of potlucks. We all looked forward to my grandmother’s saba-zushi and my aunts’ maki-sushi.

In the dark, we helped deliver cardboard boxes of mochi to everyone’s cars and say our goodbyes. Looking back, I imagine how bone-tired my parents must have been when we finally made it back to Anaheim that night. But this is what Christmas Day was for us – not running to see what Santa had left under the tree, and cinnamon rolls and hot chocolate, or re-enacting the Nativity.

These days we are exchanging very few gifts; just for the nieces and nephews, really. For a number of years, the best gifts for me are not the kind you can put a bow around: gifts of the spirit, of love, of friendship, of time. I have had this in abundance from many these past months. This Christmas eve I also hope for the gift of answers, “coherence” for a treatment plan. My platelets have risen again to a normal count but I’m waiting to hear what the Dana-Farber doctor thinks of that and my treatment options.

We will have a Christmas prime rib tonight, but definitely will have ozoni for New Years breakfast. It’s an acquired taste, I think, but if you’re interested, I will make it for you. Merry Christmas!

Sunday, December 19, 2010

Sunday, December 19, 2010

Susie-the-forward-planner didn’t plan ahead to have pistachio ice cream in the freezer for tonight. I planned ahead to prepare and photocopy 200 program inserts with hymn lyrics (and kept them dry in the pouring rain yesterday), and Janet and I coordinated potluck details, but I only got as far as anticipating a long nap after today’s ward Christmas program. Now that I’m up, I’m realizing, “Drat! No pistachio ice cream in the house!”

If you’re wondering what in the heck I’m talking about, I’ve explained in my November 16th and 21st posts why pistachio ice cream is my celebratory treat to myself, and looked ahead to expect that the December 19th choir performance would merit some. And surely the choir today delivered in a way worthy of Häagen-Dazs: joyfully, confidently, and with the Christmas spirit.

But it’s honestly not about what I think. To me it’s about the choir members having fun and feeling good about committing volunteer time and effort in bringing their voices together to enhance our spiritual community. It’s about the ward members feeling uplifted by the choir, no matter what the occasion.

And how can we all not but feel elevated by Janet at the organ? There is simply nothing like Janet playing “O Come All Ye Faithful.” Many years ago, before Akemi started school, Bing and I had to seriously consider whether to move to a better school district. We weighed commutes, real estate realities, demographics of nearby wards and stakes. . .and whether Sundays could be the same without Janet majestically at the organ. Clearly the Leungs voted with our feet, as here we still are, and are still thrilled with what Janet comes up with each week and for the special musical occasions. Just wait until we get back to the Stake Center and “our” organ.

As I said the choir at Tuesday night’s rehearsal, in October when I had the prospect of chemo through January before me, I really didn’t see how it would have been possible to have prepared with the choir and conducted today. It was truly a gift and an answer to prayers that, for a number of reasons, I was able to do so. And for Janet, too, also recovering from her own chemo and also coping with surgeries this fall. Yes, we’ve been quite a pair. Standing there today in front of the congregation seeing smiles on so many faces, I was grateful for the countless tender mercies these past months.

Really, I don’t need the pistachio ice cream. The good feelings from the congregation and of the choir members at the potluck are sweet reward enough.

Friday, December 17, 2010

Friday, December 17, 2010

Last night my brother John said I was letting up on the narrative here, so here’s the latest.

I’ve been slogging my way through various WM Foundation publications and other medical articles on applicable immunology and genetics, and Googling the terms that have come up in during my Dana-Farber doctor meetings and in their various emails and reports. All I can say is that while I think I get the gist, it is mostly Greek to me. And I mean literally Greek: alpha light chains, beta-2-microglobulins.

On Monday I’m scheduled for the follow-up blood tests, and if past experience is any guide, it will be at least a week before my USC doctor gets those results. That’s not even taking into account the holidays. She’ll need to send those results to the Dana-Farber folks, and then I anticipate it will take another week from whenever they get the results for them to “put their heads together” (seems to be a favorite phrase) and let us know what they make of them. If these results prove out their antibody hypothesis, then my doctor here will run that immunoglobulin trial, which itself will take a week.

I figure I’m probably not going to know whether they will recommend more chemo or not well into January, and that as long as my platelet count hasn’t fallen precipitously, there’s no need to worry about anything else at this stage until after the new year. In fact, yesterday I told my boss that I’m realizing there are times when I realize I’ve actually forgotten about it. (That plus I’ve actually been kinda busy at work and trying to push my re-landscaping along so Akemi doesn’t come home to yet-another war zone of one of Mom’s house projects in progress.)

It’s been suggested to me that I refer to this condition not with the “c-word” but as a “proliferative cell disorder.” Less ominous, and more descriptive. Something I live with while they do “watchful waiting” for as long as possible.

So I intend on enjoying having Akemi home as of next Tuesday night and celebrating Christmas and Japanese New Years in various ways over the next couple of weeks.

Tuesday, December 14, 2010

Tuesday, December 14, 2010

The Dana-Farber doctor called today. The biopsy he did shows a reduction in the lymphoma infiltration of my bone marrow down to 5%, which he characterized as a “fantastic result” to the September and October drugs. They also see evidence of normal platelet production. That's the good news.

The question that he says remains complicated and unanswered is why my platelet count has fallen and remains relatively low, if neither the lymphoma nor the chemo is causing that. Something is “gobbling up” platelets.

The theory he now wants to test out is that I could be producing an antibody that attaches to the platelets and that my spleen is “taking them out.” He is having my USC doctor repeat a test and run a new test and then will have her try giving me an immunoglobulin to see if that increases my platelet count.

He said the results of all the tests I had back there don’t add up yet and that he wants to get a better handle on this mysterious platelet story before they talk about whether I need more chemo at this point.

So now I’ll see when my USC doctor wants to run these additional tests.