Tuesday, September 28, 2010

Tuesday, September 28, 2010 – Day 30

You need to rebound in order to win the game. What?!? Basketball talk from the LA Phil season ticket holder, the opera buff, the museum goer? If you know me really, really well or if you’ve known me for a long, long time, you know I like basketball. You might even know that I was a statistician for the UCI men’s basketball program throughout my college years, and was head statistician my senior year. Although I ultimately kept the play-by-play, I was first trained on the rebound chart, thereby learning from the coaches the importance of getting the ball back and “controlling the boards.”

As for rebounding, I’m on it. No more headaches, diminishing muscular aches, growing stamina. I’m sleeping better, food is tasting more normal, and the steroid-induced puffiness has receded. I was happy to be back at work part-time yesterday, and I am happy my colleagues are happy to have me back. I am happy to be gaining some distance from “chemo brain” and have the energy to pick life back up from where it got left in early August – remodeling my bathroom, changing up my landscaping to be more drought-tolerant, working on the ward choir Christmas program.

As for “controlling the boards” with Waldenstrom’s, it means getting to the only clinic in the world dedicated to the research and development of WM treatments and a cure, and that is the Dana-Farber Cancer Institute with Harvard Medical School in Boston.

Right after learning of my diagnosis in August, I started receiving a feed on the most current published medical research on WM and the state of analysis on diagnosis, prognosis, and treatment options. Pre-dawn one morning in Bar Harbor while Akemi was still asleep, I sat on the floor of our hotel dressing area where I didn’t think the light would disturb her, comparing on her computer screen my bone marrow biopsy results and various blood reports with these medical journal articles, all of which were generated by Dana-Farber physician researchers. I satisfied myself that my USC Norris physician knew what she was doing for this frontline approach, but after that, I realized that all roads lead to Dana-Farber.

Also while Akemi and I were in Maine, I had my mother with my brother John’s help get a hold of my father’s medical records. My father passed away three years ago from a non-Hodgkin’s lymphoma, but my mother did not remember nor did she have any materials on hand to indicate exactly what kind of NHL he had.

In reviewing his records, it turns out that Dad also had a lymphoplasmacytic lymphoma. Dum-da-dum-dum. So in addition to inheriting the platelet bleeding disorder from him, it’s likely I’ve also inherited the genetic predisposition for a lymphoplasmacytic lymphoma. These researchers have already identified a strong familial link in WM cases and are actively soliciting cases with first-degree relative connections.

So my USC doctor and I are arranging for a consultation at Dana-Farber later this fall, with the goal of having high-level genetic analysis done. My future treatment options are highly dependent upon whatever my specific chromosomal “glitches” are.

There’s only so much of the board I can control in this game. But my rebound mindset is what the Lord told the Prophet Joseph Smith, while in the midst of deep affliction: “[A]ll these things shall give thee experience, and shall be for thy good” (Doctrine and Covenants 122:7). And so I believe that no matter what happens, these experiences are ultimately for my good. Then go out there and rebound.

Friday, September 24, 2010

Friday, September 24 - Day 26

I’m moving on from smoothies. Don’t get me wrong – I love them. And smoothies have been my almost daily salvation since Day 1, quenching thirst and sneaking protein into me when my stomach rebelled against more solid fare. As much as I have enjoyed and benefited from my friends’ fruity and substantial homemade concoctions and Jamba Juice, and managed my own versions (which Akemi does not like; no frozen bananas for her), I’m just glad to say that I’m feeling much more stable and solid, and am no longer dependent upon smoothies.

But before I leave the “month of smoothies” behind, I’d like to tell you about Weeder. Some of you may remember Weeder. “Weeder” wasn’t his real name; I’m told he got that nickname as a young man because even then he smoked like a chimney. Weeder was one of my mother’s oldest and best friends. My grandparents and his parents were friends from early Little Tokyo days. His parents came to Pasadena before the war and ran a florist shop called Lake Florist at 104 S. Lake. Behind the dilapidated store front was the family’s bungalow. Weeder did the good son thing, stayed with his parents to help run the shop instead of going off to college, and kept it going after they both passed away. He never married and led a life that was. . .ahh. . .uniquely his own.

My favorite childhood memories of Weeder were every Labor Day weekend, right before school started, he would show up at our house (always unannounced), carrying four big shopping bags, one for my three brothers and me, brimming with school supplies. And we’re talking the fun stuff : compasses, rulers, dictionaries, reference books, nifty pens, colored pencils. It was always a treat to discover what was in those bags. But Weeder would also show up at mysterious times throughout the year, leaving a floral arrangement and the best books on our doorstep. He also remembered every graduation and major accomplishment. At his funeral, many stood up and told the same story, how Weeder showed up at their door right before school started, bearing those same magical bags, showed up in the audience at their concerts or in the stands at their football games, left the generous envelope on their doorstep, too. I marveled at his devotion to so many of us children of his friends whom he adopted as his own, well into our adult years.

I really got to know Weeder when I came to Pasadena after graduating from law school. The condo I had then was on Del Mar, literally around the corner from his shop. He would often come over for dinner and it was easy for Bing or me to drop off food for him, especially during the crunch of the holidays, Valentine’s Day and Mother’s Day in particular being the killer for florists.

Every other word out of his mouth was a four-letter word. But Weeder taught me not to judge a book by its cover, because he was one of the most intelligent and intellectual individuals I have ever known. He quoted Shakespeare and Oliver Wendell Holmes, dissected foreign policy, and when I was practicing securities law, taught me a thing or two about market making. His wit was ascerbic, and he enjoyed it if someone would “take him on.” He could be, in a word, scary.

Of course Weeder was our family florist (family jeweler, family florist – you understand our loyalties run deep). So Weeder was in the thick of my wedding preparations. After all the wedding hullabaloo died down, Weeder said to me one day, “I never got you a wedding present. Tell me what you didn’t get that you still want.” After arguing with him that he didn’t need to get me a present and him saying he was going to get me a #@%$ present, so I might as tell him what I want, I finally said, “Okay, a blender. We didn’t get a blender, and we could use a blender.” A blender! That was not at all what he had in mind. A silver platter, another china setting. . .nothing so inexpensive and utilitarian as a blender. He did not want me remembering him for giving me a X&$%*@ blender. But I insisted that I really could use a blender, and a blender showed up at my doorstep not long after that.

So the first thing I made with that blender was a strawberry mousse recipe I saw in one of my cooking magazines from the Hyatt Regency in Waikiki, and I took it by the shop. He chuckled his famous Weeder chuckle when he was really amused, and he said, “Hey, what I really wanted was chocolate mousse.” “Strawberry mousse” became a running joke between the two of us until the end of his days (as in, “What the @(#* did you bring me this time. . .more strawberry mousse?”).

I cried when I saw a photo of his shop being demolished on the front page of the Pasadena Star News. It still pains me to see the CalNational Bank there instead. And one day the motor burnt out in that blender. Weeder, the shop, the blender, long gone.

Now I have a hefty, fancy blender/mini-food processor that works great. And I’ve used that spiffy blender a lot this month to make smoothies, each time thinking how about Weeder and how he didn’t want me remembering him for giving me a blender. He surely would have had some choice words to say about me having cancer, but he would have been here for me. I can’t think of a better way to remember him after all, someone who was always there for me and so many others.

P.S. Here's a rare photo of Weeder holding Akemi.

Tuesday, September 21, 2010

Tuesday, September 21, 2010 - Day 23

Yesterday was a six-vial day. Meaning, one of my now-favorite phlebotomists who wears a “Fight On” button painlessly got six vials of blood out of me faster than you can sing the USC alma mater. She’s a favorite because of the painless and fast part, not because of the button part, but I actually do think “Fight On” is an appropriate theme for a hospital.

(Six vials were noteworthy, but the record still stands at 14 vials. Believe me, that felt more like Pagliacci’s “tears of the clown vesti la giubba” aria).

All that special attention and work for the lab was for the end-of-week 3-assessment. My hematologist oncologist, Dr. Weitz, will consider this treatment successful if: (1) my platelet level rises to the normal range and stays there; and (2) my IgM blood protein level falls to the normal range and stays there.

So, drum roll, please: Platelets have doubled (doubled!) to a squarely normal count and higher than my 2006 baseline level. Analysis: lymphoma has cleared out of my bone marrow. (Cue: APPLAUSE, HEARTY CHEERS, CONFETTI FROM CEILING). So the eye will be on what the platelet count does from here.

But (Cue: HUSH IN AUDIENCE): the IgM blood protein remains high, although it will take a few months, if not several months, to evaluate that. If it doesn't start to budge soon, I “get” to do another chemo round soon. (Cue: CONCERNED MURMURING).

So based upon the Weitz success criteria, like the Obama economic plan, we have indications of the right trend, but it’s still too early to tell, and we must keep our expectations measured. (Credit for line concept: my brother John.)

Everything else has tanked – the things that are supposed to be high, are low; the things that are supposed to be low, are high. My kidney and liver are very unhappy, overworked, and have put in for a workman’s compensation. My body is paying the price of all the bad cell destruction, but bad cell destruction is what we want. (Cue: SCATTERED BOOING, MOSTLY HEAVY SIGHING FROM THE CANCER VETERANS).

Otherwise, I’m gearing back up with work and eager to resume what I thought life was going to be like back at the beginning of August.

Concluding announcement: I will have “maintenance” chemo, one dose like I have been having on Mondays, once every other month, for the next year.

Fight On through week 4.

Saturday, September 18, 2010

Saturday, September 18, 2010 - Day 20

Gaman. It’s the Japanese word “to endure, to persevere, to overcome,” with dignity and grace. Dignity and grace are important parts of the definition. When my grandparents and parents were in the wartime relocation camps, gaman was their watchword. My family didn’t come across the plains, but it’s a good thing I’ve had their pioneer example of gaman. I needed it Thursday night and most of Friday, when intense muscular pain, swelling, and nauseousness became too much like the material about which General Authorities write inspirational books. About 3 am Thursday night I was thinking, “Okay, really, I think I’ve done the pain and suffering lessons. Really. Can’t I move on to some other life lesson now?” Gaman. Enduring is hard enough; I’m working on the dignity and grace part, too.

I’ve been often asked, “Does Akemi know how you’re doing? How is Akemi doing?” She often calls me while she on the shuttle bus between Tufts and NEC. We had a nice long talk early this morning my time while my body systems were rebooting and while she was folding her laundry. No matter how I am feeling, a phone call from Akemi cheers me up instantly. She emails me links to funny YouTube videos. My greatest joy is that she is happy and thriving.

In August she was an orientation leader, helping the new double-degree students navigate the complicated start-of-school intersection of Tufts and NEC required activities (e.g., having to take your theory placement test or having your assigned orchestra audition time at the conservatory at the exact same time as your math placement test at Tufts). And she helped Tufts freshmen move into their dorms, in pre-hurricane heat and humidity.

Now that classes are underway, she is cheerily optimistic about liking her engineering classes and is excited to be using cool engineering paper. She is again concertmaster of the Tufts Symphony Orchestra, her Tufts schedule precluding her from being in the NEC orchestra again this year. She and the conductor are delighted that a bumper crop of new enthusiastic freshmen violinists and violists have arrived. Her violin teacher was very pleased with her summer work when they were together at the music program at Mt. Holyoke in August, and so she has some momentum on this year’s program going for her: the Prokovief second violin concerto, the Bach g minor partita, a Grieg sonata. There’s more repertoire I haven’t heard of, I’m sure. And somehow in all of that there’s also her NEC music theory, solfege, and piano classes.

And she loves the Cambridge University Ward. This famous congregation has been known for decades and decades as one of the best wards, if not the best ward, in our entire church. All the single undergraduates in the greater Boston area attend this ward, so there are students there from Harvard, MIT, Boston University, Wellesley, Berklee School of Music, Simmons College, Northeastern, of course Tufts and NEC, even Brandeis (a Jewish convert to the church). One young man at the Rhode Island School of Design even comes down from Providence each Sunday. You can imagine how vibrant, interesting, and smart these young people are. She has made great friends in the ward and is happy to be back with them, while making new friends among the new arrivals.

Her roommate this year is the other violinist her class in the double-degree program. The girls became good friends last year and have a lot in common (as in, when Akemi took physics this summer, Ji-Wen took chemistry). I hear they have a nice corner room on the second floor of an old house, in a location convenient to the library and the beautiful Tufts performing arts center, where she keeps her violin and practices, and also picks up the shuttle.

While I wouldn’t have wished the audition/application process on my worst enemy (talk about needing to gaman), a great freshman year and a promising start to her sophomore year have made that high-anxiety trial, and all the sacrifices of those Colburn/High Point/Poly years, worthwhile. I’ve assured her that I, and others, will give her the straight scoop on how I am doing so she can concentrate on her life in Boston. While we were in Maine, after we knew about the diagnosis but before the chemo started, she said, “Mom, I’ve learned the stiff-upper-lip from the best of them, and that’s you.” So I have to be glad, for all that Akemi and I have been through, that stick-to-it-tive-ness, whether through bad or for good, with an eye on the big picture, a commitment to the joy of living, and a responsibility to the grace of gaman, are what we can give to each other.