And The Winner is….

It’s done! The trips back to Boston and DC are behind us and the colleges’ programs, opportunities and atmospheres have all been re-tested. Miss Vicki mulled, considered, parsed, poked, prodded, kicked tires, quizzed students, slept in dorms, ate college food, strolled campuses and made lists of pros & cons. And last night, she rendered her decision….drum roll please….she has committed to Barnard!


Of course, the first thing we needed to do was get us some Barnard swag! So, today I took her into the city to the Barnard campus for a couple of sweatshirts, a car sticker, etc. Even got her brother a shirt saying “Barnard Football – Undefeated since 1889!” Then we strolled around the Barnard and Columbia campuses and down to 112th and Broadway to have lunch at the diner made famous in the TV show “Seinfeld” (you would recognize the outside for certain – inside it is much smaller than the studio version). The Morningside Heights section of Manhattan is very, very nice and amazingly clean and safe. Frankly, better than any area of the city I’ve been in before. I only wish it hadn’t been raining today as it would have been fun to take a walk in Riverside Park before running off with our booty.

During Vicki’s search process, I learned that many people are unfamiliar with Barnard, so I will take a moment to tell you about it. Barnard is the women’s college at Columbia University. It is both a part of Columbia University and independent of it at the same time. Barnard and Columbia students take classes together, participate in the same clubs, sports teams, live in each others dorms, etc. However, Barnard has its own Board of Trustees and admissions process and provides many services such as career counseling, peer support, some clubs and some traditions that are unique to Barnard. Barnard degrees are conferred by Columbia University with the seals of both Barnard and Columbia (and Columbia must approve of the hiring and tenure of professors at Barnard).

So, a natural question (for me) was – why didn’t Barnard just merge into Columbia like Radcliff merged into Harvard long ago? The answer: Columbia asked, Barnard said No! After 10 years of asking, Columbia gave up and opened it’s admissions to women but still maintained the curious “she is but she isn’t” relationship with Barnard. Barnard didn’t want to get married, she wanted to live together and keep her own name! And that’s what they do.

In any event, Vicki is very excited about becoming a “Barnard Woman” and we are, of course, very proud of both her achievement and the thoughtfulness she put into deciding the best college match for her. The picture above is one of Vicki’s graduation portraits --- doesn’t she look like a Barnard woman?

Staying up Late

Robbie and I met with the onc yesterday to review my scan and blood work. I had suspected that the results wouldn’t be that good and Rob came along to be part of the decision making. As it turned out, the results weren’t good, but they could have been worse. My tumors continue to grow and have reached a size now where I can feel them – hence the liver pain I’ve had for the last few months. My CEA level (blood indicator of cancer activity) is also very high. Nonetheless, we decided to hold off a little longer on treatment to take advantage of the fact that I am feeling as good as I have since this whole thing started.


That may sound a bit odd since delaying treatment is not without risk, but the decision really goes back to my overall strategy. As an incurable patient, my goal is to maximize my quality of life and extend it as much as possible. The various forms of chemo available to me all have rather nasty side effects and each works for only a limited period of time. Therefore, I have to balance how much I get (and when) in order to preserve as much chemo-free time as I can get without risking a big drop in health. In this case, it seems worth the risk to try to extend my free period a bit longer. So, I will get new bloods and visit the onc in six weeks. If my levels haven’t deteriorated too much or the pain hasn’t gotten too bad, I might be able to squeeze out another six weeks off. It seems pretty doubtful that I could get any more mileage beyond that. So, six to twelve weeks is my new timeframe, barring an occurrence of jaundice or other problem.

As part of our meeting, Dr. S showed us the latest scan and compared it side-by-side to my January scan (ain’t technology something!). It was a fascinating lesson in anatomy as he identified the various organs and pointed out the tumors. They are definitely much larger than the last time I saw a scan – maybe a year ago – with the biggest ones about 1.5 inches in diameter (the size of a ball with the same diameter as a silver dollar). One is directly under my ribcage near the outer edge of the liver and is the culprit in my pain issue. But all the other bits and pieces are exactly where they belong and looked marvelous!

Another little item I learned was that I have something called Gilbert’s Syndrome (it's pronounced in the french, "Jzhil-bair"), which is neither terribly uncommon nor particularly troublesome to the average person. It’s a genetic defect that makes the liver a bit of an underperformer in processing bilirubin. Most people who have it (something like 1 in 20 people) would never know and never have a problem. It’s only relevant for me because at least one of the possible drugs I have not yet had can be tricky to dose correctly for we laggards in bilirubin processing. Also, one of the symptoms of Gilberts can be fatigue and I wonder if that might be a bit of a complicator for me as well. Curiously, people with Gilbert’s seem to have a lower risk of heart disease! So there’s a silver lining out there for the 1 in 20 of you who may read this and wonder how your bilirubins are doing today!

In short, I am just like the kid who asks Mom if he can stay up an extra hour ‘cause there’s no school tomorrow. Perhaps I’ll pay for it later or maybe I’ll just sleep in, but I’m going to try to take advantage of this chance to be chemical-free a little longer.

Miami con mi Familia

Got in late last night after four wonderful days at Miami Beach. The weather cooperated, giving us sunny mid-80’s afternoons and warm evenings, perfect for enjoying beautiful South Beach. We stayed at one of the classic Art Deco hotels on Ocean Avenue directly across from Lummus Park and the beach beyond. If you have never been, I highly recommend it – Ocean Avenue in the Art Deco district is lined with outdoor cafes (perfect for people watching) and dance clubs (bursting with the energy of Spanish/Caribbean or current club-scene music). Our hotel provided comfortable lounge chairs and towels on the beach and, for a modest fee, we rented big umbrellas to protect our tan-deprived hides.


Rob, David and I also took a day trip to Everglades National Park where we saw plenty of alligators and anhingas (large southern cormorants), while Vicki stayed at the beach to rest, read and prep herself for the coming flurry of college visits.

For me, one of the highlights of this trip was a visit to Peter Lik’s photo gallery. His work is absolutely amazing and all shot with – dare I say? – film. As a lover of nature photography, I must say that his color and composition are incredible. He also prints his work on glassy tablets, not paper, which give them a luminescence that reminds me of the rich, vibrant look of old Kodak 64 slides. But his work is on a very large scale – with images typically 2 by 4 feet in dimension – crystal clear and bursting with detail. The image for this post is one of his but it just doesn’t do justice as a thumbnail. Here’s a link to his website: http://www.peterlik.com/

Now we are back and the schedule is jammed with admitted students tours. I get tired just thinking about it – I hope Vicki doesn’t get overwhelmed too quickly with all the info the schools will throw at her. We’re doing NY area schools this weekend with DC and Boston area trips in the coming weeks.

In the meantime, I had a CT scan and bloods today and have my follow up with Dr. S next Tuesday. I suspect that my “chemotherapy-free interval” will be declared over, but if he so decides, I am going to ask for a three week reprieve so that I won’t have to start until the college touring is over.

The Old College Try(out)

Well, the letters have all arrived (or more accurately, the emails) from the colleges where Vicki applied and now it’s time to….gulp…decide! At her busy-body parents’ insistence, Vicki applied to 12 schools from which she received 9 admittances, one waiting list and two rejections (the fools!). As a side note, I have been reading that the number of schools an average kid applies to is much higher these days than they were before (10 is now the average) as kids “shop” for the best deal on aid/programs, etc. Not surprising, I suppose, since its so #@$%&* expensive!


In any event, she now has to decide between American, Barnard, Boston College, George Washington, Muhlenburg, Rutgers, SUNY Binghamton, Tufts and UConn. She’s trimmed that list about in half and will be doing “admitted students” days and/or overnights throughout April to figure out which school offers her the best combination of program, experience and opportunity. Of course, Mom and Dad have their biases but in the end, she needs to decide which one feels right….and one way or another, there’ll be a new college sweatshirt hanging on the back of the kitchen chair by May 1st!

Writing and Publishing

Despite the weather (snow showers again today!), my calendar finally says that it is April and with the potential arrival of spring, I think it’s time to come out of the closet. I have been in my closet for some time now writing, but not blogging. With the exception of a little burst when I was in Florida, I haven’t been on-line much as my writing attentions have been elsewhere. Specifically, I’ve been novel writing.


I am coming up on a year of rest from chemo and as I have moved further away from the wash of chemistry, I’ve felt much better – fewer and fewer physical discomforts, the return of my flowing locks and better energy (although anything resembling a normal sleep/wake cycle still eludes me). But as I’ve felt better and passed the dreaded 21 month barrier last July, I have thought a lot more about what I can do to stay engaged and productive if I continue to fend off the big decline. It could be a while.

For me, the most difficult thing about cancer isn’t the physical discomfort. And with my happiness about coming this far, it’s less about the emotional side. Instead I have been preoccupied with this question: Okay great, you’re probably not going to die in the next year, now what? I absolutely hate the idleness and lack of productivity that comes with this illness. I also hate the fact that I am no longer capable of doing things that I did before or only able to do them in a much more limited way. So I set my mind on trying to find something meaningful, at least to me, that I can do when I have the energy but does not involve deadlines or obligations which I would fail to meet the next time I have one of my all-too-frequent physical drop-offs. So, I arrived at using my interest in reading and writing to write fiction.

Learning the craft of fiction writing is a challenge but is quite engaging and, in many ways, cathartic. I started on my goal of writing a novel last July and, with the help of a local writer’s group, my lovely wife and Vicki (herself an enthusiastic reader and writer), I actually finished a first draft about a month ago. It’s now being reviewed by several writing-knowledgeable friends. I hope that it doesn’t suck and the early feedback I’ve gotten has been quite encouraging. So, although I’m sure I won’t win a Pulitzer, I hope that I will be able to pull it together presentably enough to share more broadly.

And that brings me to publishing. In addition to the work of actually learning to write something worth reading, I have been doing a lot of homework on the publishing industry generally. And it’s quite fascinating. The industry is going through enormous change, driven by technology, and there is a wide variety of opinion about what’s good and bad about traditional, independent and self publishing. The rise of the eBook is also causing earth shaking change. As an economics/business model junkie at heart, reading the articles, blogs, websites, etc and parsing out the pros and cons of all this change for publishers, authors and readers alike is great fun. Here are a few thoughts for you on that:

- The Big Six publishers are losing their power to decide what is and isn’t worthy of publication. While they are deeply knowledgeable - no doubt - about how to edit, package and market books, they are rather pricey (from the reader/buyer perspective), slow-moving/unsupportive (from the author’s perspective) and overwhelmed (from their own point of view). By overwhelmed, I mean that they get far more material from would-be authors than they could ever handle and even the system created to get them on board (literary agents) is equally overwhelmed.

- Independent publishers and, notably, self-publishers have grown in strength and numbers over the past decade. The rise of the eBook, in particular, is making it easier for small fry to make their work available to the public. As a result, new authors continue to turn away from big publishers and go independent and even some established authors are going independent. After all, the effort it takes for authors to market their work to the Big Six is so similar to the effort needed to self-promote, why not go straight to the public and make more money?

- With the flood of books available in eBook only or Print-on-Demand services, the challenge for writers will be how to build your own audience (not please a publisher) and for readers will be how to find reliable venues for discovering what’s really worth reading (since fewer books will go through the filtering/polishing process of the Big 6).

If my “first attempt” novel isn’t too terrible, I actually have relatively inexpensive ways to make it available either as an ebook or a paperback, which literally did not exist at the same cost/quality only a few years ago. For many authors who are trying to make a living by writing, I think this is a fabulous thing. There are already success stories of people who self published ebooks, marketed themselves and have grown an audience for their work (and made significant money). In my case, I’m not dreaming about big money. I’d just like to learn to write well enough to produce something worthwhile. And the ultimate judge of that quality is readership. It would thrill me to no end if I actually wrote something that strangers enjoyed. Maybe I will!