Oncology is definitely an art more than a science. Today was a bit of a white knuckle day because, in addition to the regular discussion with Dr. Picozzi about his red blood cell count, anemia, blood sugar and his weight (131 lbs.), we were there to discuss the possibility of more chemo. Pediatricians talk about parents being sicker than their kids, just in a different way. I am sure that I have done nothing to dissuade Dr. Picozzi that I am a total nutcase. But, being the “well spouse” surrounded by a lot of people that took a bullet that somehow I missed, is an uncomfortable environment and one that doesn’t bring out the sanest part of my personality.
Like most working couples, our first few minutes of waiting for Dr. Picozzi today, following Scott’s blood draw, were spent on our BlackBerries, synching up our calendars and forwarding email to each other. Then, we went over our agenda for our meeting. He promised that the discussion regarding his bowel movement issues would be saved until the end, so that I could politely excuse myself and he could maintain an “illusion of an illusion” of romance in our marriage.
It turns out that oncology is a lot like theoretical physics. The absence of tumors is a momentous accomplishment but not the end of the story. There are still the cancer equivalents of nanoparticles, that don’t show up on scans – yet. Either they held on like cockroaches through the napalm exfoliation of chemo. Or, harder to wrap your arms around is the idea that there is some dark matter – invisible yet you can’t prove that it doesn’t exist - that will eventually turn into tumors, or might not, and nobody knows when – the black holes of oncology.
There are two ways of dealing with the unknowable – blast it with chemo, followed by a prolonged or lifelong maintenance dose, in hopes of taking out something you don’t know is there. It’s pretty hard to prove that something you never saw was successfully eradicated, so there are no studies on this approach, but it is one that is gaining traction. (The part of this theory I find most troubling is that it begins with 5 days of a high dose to see if you can tolerate it at a lower dose. Five days seems pretty arbitrary. Not being able to tolerate 5 days of martinis, walking in Jimmy Choos, or sappy romantic comedies seems like a poor indicator as to whether I could tolerate it once a month.)
Another approach is to wait until gravity and the primordial goo come together and appear on a scan, at which point it can be obliterated with a more targeted approach – interventional radiology, surgery, or a more aggressive and broader chemo regime at that time.
Liminality is fine for college philosophy and yoga retreats but generally sucks as a lifestyle. Scott favors the maintenance dose to obliterate the unknown. Dr. Picozzi hasn’t ruled that approach out but doesn’t favor it – yet. Scott’s blood tests looked good (enough), although some of the results won’t be available for another week. He has scans scheduled for July. In the meantime, Dr. Picozzi’s advice is always the same, “live in the moment because you may have 2 weeks, 2 years, or forever, you just don’t know.”
Men and women clearly “live in the moment” differently. I would like to be able to say that I take this advice as a cue to pick Maya up from school early, meditate or commit myself to public service. But I don’t – I did pick up Maya a little early, but my mind was on whether it would make sense – in the moment-- to buy a BMW, because the seat heaters in my Subaru are on the fritz, making my car practically undrivable and the Consumer Reports in the oncology waiting room gave the BMW 3-series a vaguely favorable rating (if you are a lawyer trained to make words work in your favor when you have to). I think I can speak on behalf of many women, or at least the women I know and care abut the most, living in the moment often leads to retail thoughts: thoughts of Jimmy Choo, or airplane tickets to sunny places. Men, based on Scott as representative of all men, a fairly accurate sample study size, would live in their moment naked and not alone.
Alas, we are fully clothed, Subaru owners, back to the reality of our lives as tired working parents. I regret that we didn’t find Cakewrecks, the web site about cake decorating gone wrong- http://cakewrecks.blogspot.com/ - until after Scott’s appointment, because we have managed to waste much of the evening since putting Maya to bed, laughing into our pillows to avoid waking her. There’s nothing like a cake decorated with naked babies with Mohawks riding carrots to take your mind off the moment.
Zen and the Art of Oncology and Cake Decorating.
Guns, Boobs and a Bar Bet Gone Wrong
Scott is in Vancouver, Canada attending the 2010 Carcinoid NeuroEndocrine International Conference and Symposium for Medical Professionals and Patients. This is an international forum where the world’s top physicians and researchers talk about their clinical and biological research on Carcinoid and NeuroEndocrine tumors with each other and with patients. It also gives patients the opportunity to share information among each other. (While Carcinoid and NeuroEndocrine tumors are different, the treatment regimens are quite similar, thus they get lumped together. The difference is that Carcinoid patients don’t as often end up having Whipple surgeries because of the way their disease progresses. They are pretty easy to pick out of the crowd at these types of events - they are the ones eating the cheese doodles not the plain popcorn.)
Earlier this week, while Scott was planning what to pack, what music to listen to and what he could easily eat on the drive to Vancouver, I spent far too much time trying to figure out how to address three men and a woman via email. Should I have said “Lady and Gentlemen?” I settled on Gentlemen, since the “lady” was by copy. In any event, my serious inability to properly use salutations is one of the many reasons I was a very bad secretary. It may have held me back from a secretarial career and forced me into law, where I am currently battling with serious mortification brought about by a sort of bar bet gone very, very, very bad. This is the kind of mortification improper letter salutations could never get close to.
Like any good Hollywood date movie, our lives have multiple story lines, not all of them having anything to do with cancer. We have our minor plots as well. We often joke that we are much too generic a couple. If only we had minor criminal, lascivious or even political subplots, our story could make a good Hollywood script. It may not be script-worthy, but there has been a small “guns, boobs, bar bet” subplot running beneath the surface and behind the scenes, for exactly a year. Finally, the story arc has reached its natural end, or at least the end of enough episodes to package as a bad mini-series played by much better looking versions of ourselves.
While Scott was deep into a well-deserved chemo-induced pity party last May, I celebrated my 45th birthday with a group of girlfriends. For years we referred to our get-togethers as “tax study group.” And for almost a decade, it was. Then we started having children, becoming partners in our firms, changing firms, changing priorities, and moved our meetings to the bar at the Fairmont. Finally we dropped any pretense of study and began referring to the Fairmont as the “Club House.”
After a few glasses of wine, one member of the (non-study) group (who's identity shall remain protected lest her mother find out she has been scammed) told a story about how her mother had paid for a niece’s boob job, which each of us could laugh about heartily because it wasn’t her daughter. But then her daughter bemoaned the fact that grandma might die before she is old enough to get said grandma to pay for her boob job. I am sure a number of thoughts crossed my friend’s mind, some of them not appropriate for prime time. But she reported that one thought was that this was the kind of thing I would write about: The Boob Job Trust – the trust to hold funds in case grandma’s demise predates having paid for the “office supplies” of any self-respecting Hooters Girl.
The discussion and guffawing meandered to a then recent thread on a list serve we all subscribe to concerning gun trusts. Over several more glasses of wine much joking ensued as to whether I could get an article published combining boobs and guns, and a topic I already know about – pet trusts. It all should have ended there with two Aleve and a good night’s sleep, but that was just the end of a sub-arc.
In fact, I had been looking in earnest for something new to write about. The next morning I got up early and called someone in New York who I never had the chance to meet or even get to know. But she was a great champion of mine who, in fact, on April 20th, ended her battle with bladder cancer. Charis Emley edited Estate Planning magazine. Twice she solicited articles from me and left open an invitation to propose a topic for a future article.
While Charis lived in New York, surely she was from somewhere else, like Iowa or Wisconsin, raised to be polite beyond reason. She let me tell her the entire boob job trust story, and in my excitement I forgot to mention any connection to anything relevant to her. Finally she asked why I might be telling her this story and calling at such an early hour, at which point I described my story idea: a survey of oddball trusts. She seemed a bit concerned about the boob aspect, but I assured her that was just a lead-in for the inevitable speaking tour I had already planned for in my head. Now my real goal was to get something in print on gun trusts, which after my involvement with pet trusts and other left-leaning topics just seemed too tantalizing a possibility to pass up.
Fast forward a few months, at which point I have written about 40 pages, covering a dozen or so basically oddball trusts, during which time I may have acquired an FBI file after the amount of time I spent on the BAFTE (the Bureau of Alcohol Firearms Tobacco and Explosives for those who are as naïve about these things as I once was) web site. I called Professor Robert Sitkoff at Harvard Law School to get permission to use some of his material and to find out if he had anything more recent on business trusts than what I had found. In fact he had. I kept our conversation quite formal (which I am capable of upon occasion) in deference to his esteemed position, until he asked what my “taxonomy” was. While trying to remember if it was taxonomy or taxidermy that involved stuffed dead things I mumbled “alphabetical order,” which didn’t impress him. Apparently taxonomy is important to law professors, more so than taxidermy, and alphabetical order doesn’t count.
At his request, I read to him my list of topics, which included pet trusts (this becomes important later in the arc). He suggested that I break up my article into two sections, traditional trusts and corporations masquerading as trusts, or as he put it, “corporations in drag,” at which point I let go of any remaining pretense of formality. Our discussion also reminded him that he had planned on calling me to let me know that he had quoted my horrific testimony in Olympia on the pet trust legislation where one legislator informed me that while his dog was his best friend, he needed to remind me that the pets in his district ended up on the dinner table in mine. All of this is recorded on TVW, Washington’s public affairs television network and quoted on page 588 of Jesse Dukeminier, Robert H. Sitkoff & James Lindgren, Wills, Trusts, and Estates (Aspen Publishers 8th ed. 2009), and I am the proud owner of a signed copy.
Arc number 3 ends with the submission of a 15,000 word article to Charis, who graciously praises what I have written, suggests publishing it in multiple parts, but asks that I remove the section on guns because it might not appeal to a broad enough cross-section of readers. She could/should have just said that it would flat out be offensive to her readers. Again, evidence that she is probably from Iowa or Wisconsin.
But, one of the members of the editorial board did see the version with the gun section and asked if I could turn it into a stand alone piece, which I did. And almost exactly one year since the first discussion, Gun Trusts in Estate Planning, was published in the May/June 2010 issue of American Bankers Association Trust & Investments. I have tried to tell myself that nobody I know reads this magazine, except, to my total mortification, I discovered that an acquaintance and highly respected lawyer has written a most dignified article on ethical wills in the same issue. I am hoping to see her when we are in Chicago in a few weeks and only hope that she won’t make me wear dark glasses and a floppy hat in her presence (or even worse that she won’t wear dark glasses and a floppy hat to avoid being recognized with me).
Unless it’s Sex in the City or Oceans 11, the sequel never does as well, but I am thinking that the story shouldn’t stop here. Can I get a speaking gig at an NRA conference? Can I use a gay couple as one of my examples and weave together gun ownership and the need for marriage equality? Should I wear a suit and pearls or do it up all Suze Orman with lots of hair gel and red stilettos? These are the pressing questions we are faced with in the new normal.
