Sunday, March 25, 2012

In a cost-savings measure, the Easter Bunny eliminated shipping to Boston this year. Instead, the Easter Bunny utilized long-range planning techniques to deliver Akemi’s basket to her a couple of weeks in advance of Easter so she could receive it while she was home for spring break.

The Easter Bunny has had to operate with certain Easter basket requirements for this household over the years. The Easter Bunny was aware that having a dentist dad meant passing out toothpaste samples on Halloween, so the Easter Bunny has had to be extra creative to fill baskets in which candy is a minimal component. No Peeps because they stick to your teeth, but a few jelly beans were okay. Special dispensation was granted for a small, solid chocolate Easter egg and a foil-wrapped chocolate bunny from See’s.

The main basket item was usually a book. Akemi says that Sharon Creech’s The Wanderer about a young sailor girl remains her absolute favorite from among the Easter basket books. Some years there were even two books, the second one, for example, being a music reference book or some “must-have” for the home library. As Akemi got older, the other items evolved from hair bows to body lotion to lip gloss. Easter Bunny remembers adding to Akemi’s “Beanie baby” collection.

Akemi thought perhaps the Easter Bunny dropped college students from the basket list, so she was happily surprised when a basket did arrive at her dorm mail center in her freshman year. The Easter Bunny even sprang for shipping her sophomore year, too.

This year, there was a box of See’s Easter mini-eggs, a chocolate leprechaun for a belated St. Patrick's Day, and a few more practical things. Thanks to well-placed sources, Easter Bunny was aware that Akemi’s apartment lacked a small dish for tea bags and one of those big clips to seal up snack bags. So Easter Bunny gave her the shoyu dish from Kamei Sushi, a momento from a Vancouver Japanese restaurant. Easter Bunny also was the recipient of some items from a recent USC conference gift bag, so Akemi was the beneficiary of a Keck Medical Center of USC snack bag clip, USC gold costume earrings, and lip liner from a conference sponsor. Really, this Easter Bunny is the last of the big-time spenders. Oh, and a $10 Starbucks gift card, for those hot chocolate and oatmeal breakfasts at airports.

Easter Bunny’s pièce de résistance, though, was a set of Star Wars cupcake stencils. What is this, you wonder? They are pieces of curved plastic that are shaped to rest on the tops of frosted cupcakes, through which one dusts cocoa powder or powdered sugar to stencil the designs of a stormtrooper, Yoda, Darth Vader, and the Star Wars logo. You can gauge how big a Star Wars fan Akemi is when you hear that these stencils will go with her complete set of Star Wars cookie cutters.

So for at least this year, it appears that for the recipient, when it comes to the timing of Easter basket delivery, early is better than late, or never. It might have started out as a cost-savings measure, but the Easter Bunny found out that with home delivery, the Easter Bunny got to collect a hug from Akemi.

Saturday, March 24, 2012

What makes you happy when you walk in the door – the joyous barks of your devoted canine, the delicious smell of dinner cooking? I’ve never had a dog, and I’m the cook in the house, so for me, Akemi’s practicing makes my homecoming. As soon as I get out of the car, the sounds of her violin telegraph so many reassuring messages to me: she’s home, she’s hard at work, she’s making great progress.

She was a latch-key kid in high school. Between university events and directing academic programs with evening classes, it is not unusual for me to get home after 9 pm. I always have considered myself fortunate and blessed to have had such a self-directed daughter, one who held to solid study and practice habits developed at tender ages. Not many other teenagers would have done so well with so much unsupervised time. But whenever I got home, I would find she had gotten an amazing amount done (although with her Poly and Colburn double lives, 9 pm was merely midpoint of all that she still had to do each night).

After my piano and I moved out of Peralta Hills, my parents have said many times over the years that they missed hearing me practice. Whenever Akemi is away, I know exactly what they meant. Since she’s gone off to college, I may not hear her play for a few months at a time, which makes hearing her practice even more of a treat.

This past week as she has been home on spring break, I’ve gotten to hear her work on her concerto, the Tchaikovsky, and her solo spring recital pieces: the Bach b minor partita, the Mozart E-flat major sonata (K. 302), the second Martinu sonata, the second Brahms sonata in A major. At last night’s run-through for the Mugemancuro family, I told her I thought Mr. Buswell’s concept of Baroque playing is really jelling in her (he is a Bach expert), and that the Martinu is her kind of piece. I’m hoping she will be willing to keep the Brahms in her repertoire and give me time to learn it once my piano returns. On that bucket list I didn’t think I had, I’d like to add playing this Brahms with her.

Her spring break week has gone by all too quickly, jammed with Tufts school projects, a paper for her NEC grad-level music history class, the usual student-home tasks of a haircut, finally getting new glasses, and so forth. Between shepherding around an accreditation review team at work for a lot of the week and my mother landing back in the hospital, my schedule did not turn out to be very conducive for spending much time with her. We had to trade off some of our fun things planned, but still managed an evening with homemade cardamom rolls (even better than cinnamon), Thai food at Saladang Song, specialty “juicy” dumplings at Din Tai Fung, cheeseburgers at In-N-Out, and even a new adventure with Polish food. If nothing else, she is returning to Boston tonight with a SoCal food fix.

My Akemi-practice fix now will have to last for the next several weeks until I travel to Boston for her recital. The big room will sound empty and hollow again, and the walk in from the garage will return to just not being the same. For a few months.

P.S. This has become one of her favorite places to practice: an upstairs bedroom in the Green family compound in Falmouth, with a view of the bay between Cape Cod and Martha’s Vineyard.

Saturday, March 17, 2012

An Irishman asked me this week what connections could I claim to the Emerald Isle as justification for celebrating St. Patrick’s Day. “I own Waterford crystal” was my sure reply.

I didn’t come about my Waterford through a careful selection process in the Bullock’s bridal registry. Rather, I made a swift decision in reaction to Soviet-era merchandise, or more precisely, the lack thereof.

As I was leaving to study at Leningrad State University the summer of 1977, my parents gave me some money so I could buy myself “something nice” to remember the trip by. My mother kept stressing “nice.” I also took with me her list of people important to our family for whom I was to bring back small gifts – omiyage. In the one letter from home I got while I was there (my mother said she wrote one other, and I believe her, but only one got through to me), she stressed again “not to buy junk” for the omiyage or for my own special souvenir.

The problem was, the merchandise was pretty much limited to what was available in the hard-currency stores for tourists, the berioskas. For the omiyage list, I struggled against small busts of Lenin, folkloric spoons, and matroyshki dolls. As my classmates and I made the rounds of the different berioskas, I searched out items I thought more interesting, settling upon a small whalebone carving, a Ukrainian embroidered tablecloth, and packets of Georgian black tea for the folks back home.

For myself, I admired, but refrained from getting a palekh lacquered box. Last minute at the urging of some classmates, I instead got a Julie Christie-style fur hat (a story unto itself). I should have gotten the box instead of the shapka, which I found to be too warm to wear even in Washington, D.C. winters (which aren’t that cold, I know). My favorite momentos ended up being the non-berioska items: my snachki pin collection from places like Doestoevsky’s apartment and of the Bronze Horseman, and Russian literature I bought in stores along Nevsky Prospect, standing in three separate lines Soviet-style, for mere kopecks.

That is all to say I was in London that August, cramming in the sights there before making the last leg of my trip home. I had accumulated many a small souvenir, but had yet to come across that one “nice” purchase. I flew into famed Harrod’s, to see what there was to see. After a summer of eating in the LGU cafeteria and generally living in Soviet deprivation, the Harrod’s food hall and dazzling array of luxury items seemed incomprehensively decadent.

When I saw the Lismore goblets in a large Waterford display, I thought they were mesmerizingly beautiful, sparkling and intricate—a level of craftsmanship the polar opposite of the berioska standard. Yes, I knew I’d have to pay to ship them, and yes, I knew I could buy Waterford back home, and yes, I knew I was buying them in London and not Waterford, Ireland. But in my 20-year-old thinking, I didn’t know if I’d ever visit London again, let alone ever get to Ireland, and I thought, well, I’m buying them here in Harrod’s. Mom would like that, this is most certainly nice, and instantly, I knew I had liked them. I bought six, for the now-laughable price of about US$20 each.

Later when Bing and I married, John and June Fee, our Irish family, generously expanded my Waterford collection, along with other friends. Now in my remodeled kitchen, I have easy access to my crystal and make a point of using it. The sugar bowl and creamer often are small flower vases, and ice cream goes in the champagne saucers (which I don’t even think they make anymore). My Leningrad books and trinkets still have sentimental value, but my Lismore goblets purchased on the spot did turn out to be the “nice” enduring souvenir of the kind my mother had in mind.

In celebration of St. Patrick’s Day, I’m claiming my long-standing Irish connection to Waterford, here along with some “bells of Ireland” flowers and wisteringia from my garden. I had shepherd’s pie ready for Akemi to eat when she came home last night for a week of spring break. Today was made more special by celebrating our relative Pat Tom’s 80^th birthday with other family and friends at beautiful Descanso Gardens.

I have gotten to return to London; maybe I’ll get to visit Ireland yet, and adopt other “Irishness.” But I didn’t think one had to be Irish to celebrate St. Patrick’s Day?

Wednesday, March 7, 2012

Yesterday I already had had my check-up with Dr. Weitz and was waiting in the reception area for a day hospital nurse to retrieve me to set me up for my treatment, when Dr. Weitz waved her arms at me to come back into her office. As soon as I crossed her threshold, she simply said with a big flourish, “517!” “517?!,” I repeated for confirmation. When she nodded, I burst forth with a “Yay!,” to which she replied, “Yay is right!”

She was referring to my level of IgM, the immunoglobulin abnormally produced by the cancerous Waldenstrom’s cells. As with football plays and the tax code, certain numbers take on significance of their own. For me, the significance of 517 is that this is the first IgM reading that is lower than 50% of my diagnosis level of 1,200, meaning the sum of all the treatments thus far has bumped up from producing a “minor or partial” response to a “good or objective” response. To put it another way, my prognosis has improved from a five-year median survival rate to 10+ years.

This is all the more a milestone because after I was diagnosed, my IgM rose to nearly 3,400. It fell, but then a year ago while I was on Bortezomib, it started rising again at an alarming rate (normal is in the range of 40 – 230, by the way). Seven months into treatment and we weren’t looking at minor response; we were looking at no response. Given that trend line, the five-year median survival rate was shrinking down at a similarly alarming rate.

Depending upon what study you read, 40% of patients show no response to Rituxan, and Bortezomib was a logical choice for me because it has been shown to be more effective with familial patients like moi. Hard to say now what results have come from each of the three drugs I have now had, but plugging away with Rituxan has been working. I’m resigned/resolved to the schedule ahead: it will be another year before I’m done, four more treatments three months apart. But if this current trend line keeps up, I may actually get close to the top of the normal IgM range, which should buy me a good bit of time before I need any more treatment.

The adage in the WM community is to “treat symptoms, not numbers.” Some patients live with very high IgM numbers but without symptoms, so they “watch and wait” until they need to take action. Others have near-normal IgM levels but have debilitating symptoms which require treatment. What appears to be the case for me is that the Waldenstrom’s acerbated my congenital platelet dysfunction; the more the Waldenstrom’s progressed, the more depressed my platelet function became, dragging down other blood functionality with it. Yesterday’s lab results were the first showing all the blood chemistry and morphology normalized across the board. Other symptoms have resolved along the way, too. And all things considered, I recognize that my side effects have been mild and manageable. I’m even starting to get the hang of having curly hair.

One should take numbers and statistics only so far, but when dealing with so much that is unexplainable and uncertain, the data-crunching as related to the published Waldenstrom’s and lymphoma research has given me a comforting context for understanding where I stand in relation to the bigger picture.

517 has made me more accepting of today’s shakiness and headachey-ness. Tylenol and a good book from Barbara have been the order of the day, around clumps of office e-mails. I’m told it’s important to drink a lot of fluids afterwards, so my other occupation on these recovery days is to drink something every hour, on the hour.

Janet, who underwent major surgery a couple of weeks ago, and I have promised each other to both be back in action this Sunday to do the music for ward conference, her on the organ and me conducting the choir. What a pair we make! But it’s our culture to endure, and 517 is my hope, smiling brightly before me (name that hymn).

P.S. Enjoy Greg and Antoinette’s flowering plum blossoms along the driveway.