Friday, December 10, 2010

You know what they say about “no news being good news.” I’m hoping that’s the case, of course, but right now “no news” is. . .no news.

I did talk briefly with the Dana-Farber doctor yesterday, but he had not yet connected with his hematologist. He will call me back once he has.

In the meantime, I’m feeling more like my normal self all the time and I’m told I’m acting more like my usual self. I hear that’s a little frightening to my new assistant, whose first day on the job was my first day back in the office after the intensive September chemo. She says she has been glad she has been able to get oriented to the job while only seeing me at what everyone else assures her has been me at partial speed.

But I’m ramping back up. We are now in the crunch of wrapping up fall semester, having everything set for the start of spring semester right after the new year, and planning for the next academic year. In the midst of various university holiday parties, I’m feeling the pressure of getting things done that slid in August, September, and a lot of October. And, oh yes, there’s Christmas, and the planning of the really important things, like cookie decorating, the choir potluck, and caroling.

Wednesday, December 1, 2010

Dorothy here, back in Kansas. Glad to have made the trip, and glad to be home.

First off, Akemi and I had a wonderful time together. Her contribution to the Lee family Thanksgiving dinner was to help Jonny set the table. By the time Linda had collected me from the airport, the two college sophomores had a laptop computer open on the dining room table to directions on how to fold dinner napkins origami-style. Each place setting ended up with a different marvelous creation. . .but the rest of the table still needed setting. I was glad there was something left for me to do when I arrived. During the rest of the weekend we enjoyed the cold weather, a delicious Alsatian French dinner with two of Akemi’s good friends, the Ann Taylor 40% sale (really 50% for us Californians because there is no sales tax on clothes in Massachusetts), and Harry Potter in the historic Somerville theater.

I was very proud to see Akemi in action in her Cambridge University Ward on Sunday. The third member of the would-be trio came down sick, so in fine church musician fashion, she and Chad cranked out a completely new number as a violin duet with their ward organist sight reading the accompaniment in the 20 minutes before church started. I raised her well. Then a few minutes before their joint Relief Society/Priesthood meeting started, the young woman who was about to teach the lesson walked up to Akemi to ask if she knew who was going to play the piano, since the regular pianist was away for the holiday weekend. Akemi pointed at me and said, “My mom.” She ended up directing the music and last minute whispered to me, “Don’t take it too fast, Mom.” (Inside joke from the Pasadena Ward, wherein we believe hymns should be taken at brisk Janet Smith tempi.) Their bishop liked the energetic tempi and said the Sisters Leung could do the music together there any time.

All too soon the fun was over, and it was sad for us both to go back to reality on Monday morning – Akemi to the push to semester-end projects and finals, and me to Dana-Farber.
It turns out that Peter Bing has Waldenstrom’s, which explains his support of this clinic, and he apparently is very involved in clinic work in addition to his philanthropy. In order to repeat tests for their own calibrations, to capture where I am right now, and to move the agenda forward, they took 32 vials of blood (yep, 32) and did another bone marrow biopsy. The “wizard” there had me stay over another day to bring in their hematologist who specializes in platelets and coagulation, to get a handle on my platelet/bleeding disorder and its relationship with the lymphoma. These are tests that not even USC Norris and City of Hope would/could run. I was glad I felt somewhat versed in their research and latest publications to understand as much as I did; even so, I scribbled furiously to take notes, figuring I’d look things up and get them explained to me later.

Chemo here is on “pause” until my USC doctor and I get their recommendations. They’ll get the results of these tests pulled together and discuss them among themselves and with my USC doctor and me before the end of next week. Linda took great care of me, shuttling me around, taking me in the extra night, and making sure I had snacks and Tylenol for the flight home. So I’m waiting for the report from Oz, but one thing is for sure: these folks instill confidence, and certainly there are no smoke and mirrors here.

Wednesday, November 24, 2010

Tomorrow morning I fly to Boston, and I feel as if I’m off to see the Wizard.

Much thought, effort, and preparation have gone into getting this consultation set up with this doctor at Harvard’s Dana-Farber Cancer Institute and the team at their Bing Center for Waldenstrom’s Research. Earlier this summer, when I was first becoming familiar with the Dana-Farber expertise in Waldenstrom’s Macroglobulinemia, I learned that the Bing name came from Dr. Peter S. Bing, former chair and current trustee of Stanford, who made a major gift in 2005 to this center. Back in the early 1980s, when Stanford had a Southern California Stanford Alumni Association, our Bing served on its board. Some of my Paul Hastings friends dominated the board, and they enlisted him to represent a younger – and non-lawyer – constituency. Peter Bing was a regular at the Stanford events down here (I’m sure he still is) and he started to recognize Bing, always graciously chatting with him and me. Somewhere I’ve saved a letter from Dr. Bing to our Bing, thanking him for organizing some event, and adding his P.S. that they have much in common besides their name. I don’t know what Dr. Bing’s connection is to WM or the work at Dana-Farber (I’ll ask if I get the chance), but I took it as a good sign.

So I’ve got my platelet levels and prognostis factors charted, my history (including my dad’s and Bing’s) summarized, my questions typed up, my records sent. But before I get to the consultation, Akemi and I will have weekend filled with her 20th birthday dinner (where did that teenager go?), the Harry Potter movie, and hot chocolate at Burdick’s in Cambridge. I get to hear her play in a violin trio in the Cambridge University Ward on Sunday, and then Linda, my best friend from law school, will deliver me to Dana-Farber by dawn’s early light on Monday.

Like Dorothy, I’m taking with me the benefit of brains, heart, and courage from others. And just as Dorothy discovered important things about herself along the yellow brick road, I’ve learned things about myself these past few months. I’d like to click my heels three times and have this whole WM business go away, but I’m counting on getting answers in the Emerald City and learning even more. And we’re off. . .

P.S. February 7, 2011: Found the letter! So here it is.

Sunday, November 21, 2010

Why pistachio ice cream, you ask? The answer is in the stores that used to be at the intersection of Paramount Boulevard and Florence Avenue in Downey, California. Our house at 7914 Baysinger Drive , where we lived before we moved to Peralta Hills, Anaheim, was one block away from this major intersection.

At the southwest corner was a liquor store, where my grandmother took us to buy candy. At the southeast corner was Sal’s Italian restaurant and delicatessen, where my parents bought an occasional pizza and every week, or so it seemed, bought Italian bread, cold cuts, and provolone. At the northeast corner was the Winchell’s donuts, a favorite Saturday morning destination. And at the northwest corner was a Sav-On drugstore, with an ice cream counter. On summer nights, my dad would say, “Let’s go for a walk,” and we’d end up at Sav-Ons for 5-cent ice cream cones.

I think I was in a rainbow sherbet phase when I read a book that described “white, brown, pink, and green” ice cream. I could figure out what the white, brown, and pink flavors were, but the idea of green ice cream baffled and intrigued me. I asked my dad what flavor green ice cream would be, and he said pistachio. This was in the day before mint-chocolate chip and green tea ice creams came into being or vogue, I guess, as there were no other green ice cream possibilities. Not knowing what a pistachio tasted like, I remained baffled and intrigued. My dad said the next time we would go to Sav-Ons, he would order me a pistachio ice cream cone so I could try it.

He did, and my green ice cream cone was nothing like I had ever tasted before. This was subtle, certainly a far cry from rainbow sherbet, and different. Perhaps at first I liked the idea of a different flavor more than the flavor itself, but I ordered it again, to test it out, give it another try, and again, and again, and pretty soon my dad considered it “my usual” and “my flavor.”

There’s an Italian gelato place in Old Pasadena, and their pistachio is white with green nuts. It’s probably a good thing we were dealing with ice cream dyed green instead of purist pale gelato, or else my quest for green ice cream might not have lead me to ultimately becoming a fan of the pistachio flavor. Most definitely I eat other flavors, too, but whether it’s gelato, Baskin-Robbins, or Haagen-Dazs from the grocery store, I inevitably return to pistachio.

Tonight I’m polishing off the rest of the pistachio ice cream container in recognition of today’s satisfying performance of our ward choir singing “For the Beauty of the Earth.” Satisfying because I love seeing the joy in the faces of our choir members as they sing. Satisfying because I am the recipient on the choir’s behalf of comments from ward members about how much they enjoy hearing our choir sing. And satisfying because I am grateful I am even with our choir, having feared last month that this chemo would have wiped me out of action and preparation for the ward Christmas Sacrament program.

We still have some work to do, but surely our December 19^th program will merit more pistachio ice cream. Right, choir?

Tuesday, November 16, 2010

Yeh! For reasons a bit too convoluted to explain here, chemo has been punted for two weeks. Second yeh! is for platelets having doubled since 10 days ago, zooming up to 200. White blood cells have eked themselves into the normal range. The rest of the blood chemistry has continued to improve and now is almost downright normal. Dr. Weitz’s nurse looked at me with a cocked eye and said, “You’re looking really great, too.”

I’m going to have some pistachio ice cream to celebrate.

Monday, November 15, 2010

Sigh. Back to the hospital tomorrow. It was really nice this past week not getting stuck with any needles and having some distance from the last batch of chemo and peripheral meds.

The bruises and little infections have cleared up, so I'm curious what my platelet and white blood cell count now is, having 10 days from the last Bortezomib IV dose.

My routine on the treatment Tuesdays and Fridays is to go to work, get over to USC Norris Cancer Hospital on the Health Sciences campus by 2:30, and then I'm done by 5 pm and just go home from there. Much easier than the September routine.

Friday, November 12, 2010

If my digestive system were on better behavior these days, right now I would want to eat a dill pickle. I can assure you that this desire springs from neither pregnancy nor some odd craving. No, thinking of a garlicky, salty dill pickle, with a sandwich thick with Italian cold cuts, specifically is in gustatory tribute to Harold Starr.

Harold was my mother’s boss some 60 years ago. Fresh out of UCLA in 1947 (he genially tolerated and teased me about my USC employment for these many years), Harold threw open his doors as an accountant and insurance broker and in 1948 hired my 21-year-old mother as the office “gal Friday.” Since he was active in Jewish and Democratic circles, my mother helped him with many a political fundraiser and campaign event. I’ve seen her photos of Congressman Ed Roybal, candidate Adlai Stevenson, and a rail-thin young Ted Kennedy. Working for Harold is why my mother registered as a Democrat and has remained a life-long registered Democrat: she just never bothered – or wanted – to change her party affiliation.

As with Weeder, I don’t ever remember a time when I didn’t know Harold. He came over once a year, as soon as cucumbers were in season, to make his special recipe of dill pickles with my parents. His son Jeff reminded me today that he would give my brothers and me piggy-back rides to keep us entertained while the adults worked on the pickle project. In the twilight of one hot summer night, I remember watching Harold, my mom, and dad toss peeled garlic and pickling spices into Mason quart jars crammed tight with “pickling cukes,” as my dad called them, aligned in close rows covering the top of the kitchen table. Harold nudged me with his elbow and told me to put a few more garlic cloves in one particular jar. I asked him how come that jar needed more. With a wink, he told me he could just tell it just did.

Then the jars would get turned upside-down on newspaper overnight (to make sure they were sealed and not leaking, my dad explained), and then righted the next morning. Over the next few days we’d hear the “pop” of the canning lids as the fermentation got underway. And we would wait impatiently for my dad to pronounce the pickles “ready.”

Opening the first jar of the batch was an occasion. We always had them with salami sandwiches, for some reason, and often with my mother’s good potato salad. With six of us, we would handily wipe out a jar in one lunch. There was something special and different for us about pickles from Harold’s recipe; store-bought just never cut it. Harold’s pickles became the standard against all other pickles were judged. The ones sold in the barrel in the general store on Main Street in Disneyland and in Jewish delis in LA came close, but we knew what the only true pickles were, and they were Harold’s. If you were ever given one of these “private reserve” jars from my parents, you are special, indeed. When we got down to the last jar, my dad would solemnly intone, “This is it.” And then we would hope for the time when the next batch was ready to eat.

So Harold and his wife Jeri have been part of the Kamei family for all these years. With Harold, we have been “the kosher Kameis.” Most recently Harold and Jeri came to Akemi’s senior Colburn recital and the dinner for the “A list” back at our house afterwards, and to the ceremony we had to scatter my father’s ashes in April this year. He has been very good to my parents over all these years and especially watchful over my mother since my father passed away. Since my mother told me that Harold passed away last Saturday at the age of 85, I have been very sad. In addition to making a mean pickle, Harold was a prince of a guy; really the best.

I’m glad this was a “no treatment” week so I was able to count on feeling fine and attending his memorial service today. Jeri said she and Harold were appalled to hear of my diagnosis, and that even in his last days, he was concerned about me.

I told Jeff that perhaps we’d have to summon the courage and energy to tackle making the pickles without him and my dad one of these days. And that would be a pickle I would eat, chemo-cranky stomach or not.