I was wrong! Patti got in touch with Dr. Pearse's assistant Faiza. Faiza said: "Just call Brad back and read the last sentence." Here it is:

No evidence of myeloma morphological activity was detected.

Remission!

To be honest, I don't know. As I walk around town at dusk, I see the fireflies that are in great abundance this year. I remember the enchanted feeling of nights spent at my grandparents' house (Dad's parents) in Chariton, Iowa. My summertime friends -- Rachel Oppenheimer, my sister (of course!) -- we would chase fireflies around the yard, the deepening twilight giving a mythical shape to those midwestern summers.

The katydids have also started their late-summer singing, and it reminds me of the night-times in my maternal grandparents' house. St. Louis nights, I slept on the upstairs back porch (it was cool there in the days before A/C), listening to the symphony of crickets that echoed my grandfather's symphonic performances we would often see earlier in the evening.

I also hear a particular high-pitched trilling of a tree frog that I used to hear around our lake in Indiana. Life was so open then! I would lie awake on my bed at night, the windows all open. I knew what to do -- go and live. There were no questions about what next, what to devote limited time towards, because there were no limits. Now I think: 5 years? 10 years? 20? 2? what do I do now?

Maybe it's enough that I have these memories, that I lived those times. I think Jill and I were able to give some of this magic to Lian and Daniel in their own childhood. Now maybe I should simply keep those memories, enrich them with additional layers of lived experience. Maybe that's the thread to keep alive.

Whatever, however, it is good to be here. If I can maintain a strong sense of that goodness, perhaps that will be the thing to do. It is quite wonderful.

roosevelt-summerbugs-2012.mp3

In the absence of any such figuring-out, I participate by default in the simple flow of existence. We went to Seattle for a wonderful visit with Lian (photos here). I managed a 5-mile hike in the Eastern Cascades. We went white-water rafting. We watched the Olympics. We hosted an end-of-summer/delayed graduation/college send-off party for Daniel (70+ people in our house!). I was interviewed for a documentary about modular synthesizers. I started swimming laps -- slowly -- again (although I keep my head above water). I walk around town. I poke away at my big summer documentation project.

The surprise change in the plan was that I would be waiting on the porch of the Inn when they all arrived for dinner. It worked perfectly -- I arrived about 10 minutes prior to John and Brenda and the gang. I hadn't seen Mom and Dad since last year because of my stem-cell adventure. What fun! Mom and Dad were totally surprised. Dinner was terrific.

The Williams concert was pretty amazing. I hadn't been to a big outdoor festival for years, and I was blown away by the technology employed. We sat about seven rows back, off to one side. John Williams himself used our row to exit -- he walked by several times. We could see very well, especially the surprise guest stars (Jessye Norman! Yo-yo Ma! Stephen Spielberg! Yikes!) as the speaking podium was set right in front of us. In addition, though, we also had an LCD screen monitor right next to us so we could see close-ups of the piccolo solos, etc. Several of the pieces performed had synced video accompaniment. Williams was a major film composer, after all. I counted four huge video screens behind us, and I'm sure more were present out 'on the lawn'. The sound system rivaled anything I've seen at a large rock show. Supposedly 20,000+ people were in attendance. I guess they needed a fairly massive amount of technical-assist.

With all the big-time production and such, the whole show seemed hyper-real (in the sense of Eco's Travels in Hyperreality). At one point I wanted to get up and walk around while the orchestra was playing to check out the various screens and speakers, as if it were a large 'installation' piece, to be sampled through investigation. The orchestra was just one facet of the technology. I realized that would be rude and inappropriate, so I remained seated and enjoyed the spectacle from there.

Don't misread me -- it was indeed a very enjoyable spectacle. Live Star Wars music! Harry Potter! Steven Spielberg!!! All in the context of the big birthday surprise for my Dad, too. This was great fun.

Daniel remarked that it seemed strange, not at all "this is gonna be so new!" because he was so familiar with the campus. But at the same time, his context for being there was completely changed. I felt it too. It didn't seem like a big going-away/life-change. Partly this was because Daniel was actually checking-in early. He had elected to participate in a 3-day hiking trip in the Adirondacks, one of the things Columbia does now to help with the 'undergraduate experience'. The main parent/freshmen good-bye event is next Monday. Jill and I will both be there.

At the same time, though, the awareness that life has shifted in a major way is beginning to creep up on me. Preparing the table for dinner tonight, I realized that we were down to only two place settings. The energy level of the house is way low. Daniel's voice isn't present. I look at the pictures on our shelves, I see Daniel, Lian, my nephews Stefan and Bo. They were kids once, and I remember them so well.

At this point I can drag out the old "stasis and change" refrain again. Change for sure, but where is the stasis? Is it me, sitting here at home, poking away at my laptop on code, sound and e-mail? The change is starting to overwhelm; how will static me cope with this now? Yikes!

       
the view from Daniel's room

I also tell myself that at least a small part is that this blog, being my "mm" blog, has slipped from a foreground position. My cancer is in total remission, and I'm not even taking any chemo-drugs at present. I had a really good appointment with Dr. Pearse two weeks ago, and we decided not to do any "maintenance therapy" with Revlimid. So right now I'm only taking some antiviral drugs while my immune system continues to recover. It's kind of strange: for the first time in the last six years I wake up in the morning and feel... normal!

Just for reportage, here are a few things from my recent non-blogginess:

• Jill and I are now official empty-nesters. Daniel is a full Columbian, and he seems to be completely enjoying himself. He stopped by my office last week (what I told him is true -- I don't see him on campus at all unless we plan to meet) to pick up an extension cord he left at home, and he was thrilled by his classes and the new friends he was making. This truly gladdens parental hearts, and it makes the emptiness of the nest a whole lot easier to bear.
  
  
• To be honest, Jill and I have been enjoying ourselves. I count myself lucky all over again to have married her.
  
  
• Things are going really well for Lian, too. The recent announcement of the new Amazon Kindles was a big event for her. Her programming team, now about 10 or 11 people I think, is responsible for all the demo software that will show off the features once the new devices get into the stores. It has to be heady stuff to be centrally involved in technology with that high of a profile. Again, gladdened hearts.
  
  
• Classes started for me, also. It appears that this will be a good year. Students seem terrific, and we have some interesting events we're planning at the CMC. Plus the Sound/Arts program is finally being put into place. A lot of work ahead, but this is good work.
  
  
• The Republicans and the Democrats had their respective conventions. I'll probably say more about this in the future, but not now.

That's a good metaphor for the feelings that washed through me this past weekend. My mom and dad came out for a visit. The weekend was excellent, wonderful weather, good food, fun activities. There are a few things we now do during these visits, part of the developing ritual. This doesn't lessen them, by the way, all are enjoyable. We had lunch in Princeton. We went (of course!) to the Chocolate Factory outlet (where Daniel used to work). We took a trip over to Long Beach Island for dinner, where the Cinnamon Bay Caribbean Grill is located. Jill and I discovered it while she was doing some Barnegat Bay project work. It's a fabulous little restaurant, and the Chef is named... Robert Garton! Rob's wife Mary is also a Chef. They run the restaurant together during the May-October Jersey shore season. For this visit we also were able to attend the New Jersey Wild Outdoor Expo. Dad loved it. Mom has pictures from the weekend here, but I'm not sure they're publicly-accessible.

It was terrific to see mom and dad, but I have to admit that the visit was exhausting. Not really in a bad way, but in a way that invokes the summer-end/winter-approach metaphor. Maybe it was because of our new empty-nestness, but I found myself being flooded with memories of childhood, growing up with my parents and sister Brenda. At the same time, I could see how my parents were aging, realizing that they will be facing some tough decisions in the next few years. I thought a lot about Ruth and Roy (Jill's mom and dad), the time being almost two years since Ruth's death. I wondered about how we construct our memories, the stories we tell ourselves. As I've noted before in this blog, my father can be complicated. My mother is a preternatural optimist, and when I'm with mom it is difficult not to partake of the marvelous world that she sees. This is a good thing, by the way!

Some of the memories are sharp, like turning the front light off last night and thinking of last year when I would leave it on for Daniel's return later in the evening. Some are more diffuse, broader, like attending the memorial service for former Music Department colleague George Edwards Friday night. I step back into last year, into life 20 years ago. Could I know then what my memories would be like now? No. I listen to recordings I've made of autumn rains, winter winds, spring peepers, and I think: "yes, that's what it will be like in a few months." Will it, though? No. It will be different.

   

   

The thing that got to me, though, was Gov. Romney's insistent trumpeting that the very first thing he will do is repeal the Affordable Health Care Act -- "Obamacare". I do admit to just a bit of self-interest here, but the whole argument that Romney makes is so thoroughly wrong.

First of all, the notion that returning health care to unfettered free markets is simply scary. The idea that insurance companies would 'compete' to have me as a client, for example, is ludicrous. If I were a health-insurance agent, I would be insane to sell me (and Jill with her MS expenses) a policy with adequate coverage. Gov. Romney claims that of course, those of us with 'pre-existing conditions' cannot be denied insurance. But I bet we'll have to pay. Also, no mention of that happy 'cap on lifetime benefits' possibility. I'm pretty sure I've exceeded mine already.

Secondly, Gov. Romney painted a pleasant scenario of being able to choose (fired! you're fired, you evil insurance company, fired!) a different insurer if your policy didn't work well. He also wanted to be sure to turn all these decisions over to state governments, where magically they will enact legislation guaranteeing better health coverage for all. I think back to when I first received my diagnosis of multiple myeloma. I recall the anxiety I suffered wondering if my insurance company would cover the new drugs recommended by Dr. Pearse. Now in that remembrance, I try to project the notion that I would then "shop around" for a better policy if I was denied coverage -- a process that could easily take several months. Or better yet, my state doesn't have good legal protection for me being unceremoniously dumped from the policy. Yes, then we pack up and MOVE TO A DIFFERENT STATE. A word springs to mind describing this: heartless.

However, the statement that really got under my skin was the repeated assertion by Gov. Romney that a panel of "bureaucrats" would decide my health-care options under Obamacare (another blatant lie, by the way). I hate the pejorative descriptor "bureaucrats" of government workers, because I have known many through my life and they are committed and dedicated individuals, often eschewing a more lucrative private-sector career in order to do public service. But that's beside the point -- when Romney talks about these bureaucratic health-decision panels is when I realize that he and his lovely wife Ann have never had to deal with serious insurance issues. Well, they are multi-millionaires after all.

How do I know this? One word: preauthorization. Talk about stress and anxiety (two things that everyone facing serious health issues needs more of): for every major medical procedure Jill or I have had, we have also endured the wait for the phone call from our doctors saying that the "preauth" has been approved. It took over a month for this to happen when I was undergoing my Velcade injections. Who does these mystical "preauths"? Well I'll be blamed -- it's a bureaucratic panel! Only this time they aren't answerable at all to us clients. Instead they serve the interests of the shareholders. Yes, heartless.

I don't think people are truly aware of what this all can mean. Jill and I both have excellent jobs, but our health situation could completely ruin us. I remember my good-hearted sister Brenda calling me in tears after I had first received my cancer diagnosis saying: "we can sell the farm to pay for anything you need -- whatever it takes..." (we have a small family farm in southern Iowa, inherited from my Grandpa Garton). Beyond the fact that the proceeds from the sale wouldn't even cover my expenses for this year alone, the moral truth is that no one should ever have to face this kind of "choice". A roll-back of our health-care system to the good ole days of the Bush era (remember how broken it all was?) like Gov. Romney apparently wants to do will mean that millions will be facing situations like this. How anyone can support this lying, ethically-bereft person for president is incomprehensible to me.

There is also something very disturbing about the 'marketization' of our moral obligations. I just finished reading Michael Sandel's provocative book What Money Can't Buy: The Moral Limits of Markets. Using a greed-driven market sensibility as a foundation for our ethical choices is wrong. What a mean and brutish society we will be.

The day of the race itself had perfect weather. The course was lightly shrouded in famous San Francisco fog, helping to cool the runners. Back at the hotel, the sun shone with the preternatural brightness I associate with California. The temperature, upper-60s/low-70s, was ideal. It all worked for Lian: her goal in this run was to break the 5-hour barrier; her final official time was 4:59:06. Go Lian!

I want to get back to the 'inspirational dinner', and the emotional intensity I felt. In a letter I wrote to Lian's friends who participated with her in the marathon, I said:

I first began to the appreciate the magnitude of the feelings I was to experience when I walked into the Moscone Center for the "inspirational dinner" Saturday afternoon and saw for myself the scale of the LLS event. The following morning, my heart was truly in my throat as I watched thousands of committed women running across the starting-line, realizing that each one represented an individual effort to finding a cure for blood cancers.

But the thing that almost caused a total emotional meltdown was seeing my name on the backs of your shirts after you had completed the marathon. None of you can know until you are on the receiving end of such a gift how much it can mean.

Here's another reason I was primed to think of life/death/time. This picture:

We walked around the island since we couldn't get into the park. It was an absolutely beautiful fall day. Another view of the hospital from Roosevelt Island:

New York was hit pretty hard. Jill and I have only heard reports on the radio, but it sounds like the flooding from the storm surge in lower Manhattan was bad. Daniel has been in touch and is fine on the Upper West Side ("Upper" is definitely good in this scenario). In fact, I think he's enjoying a little mini-vacation. Columbia cancelled classes and events both today and tomorrow. I've never seen this happen since I started working there over a quarter-century (gasp!) ago. In fact, I can only recall two other times that the University was closed for inclement weather. I suspect shutting down all mass transit and closing all the bridges and tunnels except one (Lincoln tunnel) may have suggested that closure was a good idea.

My response is to be subsumed by an odd feeling of suspension, a sense that everything is fundamentally unrooted. I can't really call it ennui, because there isn't much lethargy, and it's not a melancholy nostalgia. It's more a desire for things to be over and done-with. When will it all be over? How will this be resolved? Perhaps this is one of the symptoms of aging. Or the aftermath of a really terrible storm.

Flying into Indianapolis, I looked down and had a recurrence of a feeling I have described before, an overwhelming sense of the expanse of life. This time I also wondered about futures, the individual futures of all these people, their awareness (or lack) of it. It is so easy to spend time simply existing. The "unexamined life". One thing I've learned: disease is good for focusing the mind, for forcing a contemplation of the future. It is a testament to my current remission that I have slipped so comfortably back into life-as-usual. Ne deep introspection here lately.

Life has been happening, though. The hurricane: we lost power for a week, then two days with electricity, fortunately during the election so we could vote, then another storm hit us with about a foot(!) of snow. We lost power again, this time for three days. Much colder, and my friend Gregory Taylor arrived on one of the last flights allowed into Newark Airport -- lucky him -- and got to see the Borough of Roosevelt in a time of community crisis. He claims it was fun. We do have interesting neighbors.

Gregory was here because PGT rode again:

PGT: Electroacoustic Barn Dance, Fredericksburg VA

As a result, the music now has a particularly strong time-resonance for me. I hear theses recordings, and the power of the memories they evoke of earlier times of life is almost overwhelming. I remember playing with the "little peoplies" and "teeny-tinies" with Lian and Daniel during the school break. I remember Captain Action saving my sister Brenda's various 'dollies' from being hypnotized by the evil Dr. Jekyll using the blue lights of our Christmas tree. I remember the feeling of so-cold-they're-numb feet after ice-skating all day. The smell and taste of hot chocolate, in Indiana and in Vienna. I remember watching snow, watching snow.

CMC Parteeevent 2012

On the way up to western Massachusetts Friday evening, however, Jill and I had to drive right by Newtown, Connecticut. We saw an exit on I-84 labelled "Newtown/Sandy Hook". Earlier that day, an unspeakable tragedy unfolded in Newtown at the Sandy Hook Elementary School. I alternate between wrenching sadness imagining the horror the families faced and profound anger at the gun and violence insanity that has gripped our nation. I had lunch with Paul Lansky today, and he said "I don't even know how to think about it. I can't begin to think about it." I knew exactly what he meant. In his stirring address at the memorial service in Newtown Sunday evening, President Obama said: "I am mindful that mere words cannot match the depths of your sorrow, nor can they heal your wounded hearts."

They can't, but we now need new words to alter the course we are taking. For decades, the gun lobby has built a now-familiar formula equating gun rights (assault weapons! massive ammo clips!) with our sense of "freedom", a sense rooted in a particular interpretation of the second amendment to the Constitution. I've always felt this was wrong, somehow. Reading an Op-Ed piece in today's New York Times, The Freedom of an Armed Society, helped crystallize something for me that made sense. The article points out that guns represent the abnegation of freedom, the breakdown of society. This is not "freedom", it is the end of civilized discourse. What else can a gun speak but death? And in death is the denial of our social contract with each other. I suppose that a case could be argued for self-defense (but with an assault weapon?), but that defense is rooted in the repudiation of freedom, not a bolstering of it. When we need to maintain order through the agency of guns, it means that a culture of total disorder exists.

The stem-cell transplant this year was a heavy dose of random-reality. I think I had it in my mind that I wouldn't really need a transplant, that the Revlimid would work for about twenty years, and by then a new host of pharmaceutical agents would be ready to deal with the relapsed myeloma. Suuuure... here I am, though, totally in remission for now, but it took some doing. Funny, what I see as an incursion of randomness is probably a well-known part of the clinical evolution of this disease. Where will it go now? There is a continuum to my life, but I can only see ahead in one dimension. The twists and folds are the randomness.