The Balance of the Year

I see that I haven’t blogged during the entire month of December. Just a sign of how busy it’s been. I’m sure that it has been a whirlwind for most of you as well. On the health front, I am doing fine – I have been doing treatments every two weeks and surviving them just fine. The plan is to continue this regimen for the foreseeable future. Dr. S told me last visit that he has one other patient who had a remarkably positive response like mine, to a drug that is very similar to Vectibix (a drug called Erbitux which he says is to Vectibix what Coke is to Pepsi). When I stopped to think of how many hundreds (thousands maybe?) of patients he has had, it struck me how fortunate I am.

As for the rest of December, I regret to say that I spent a lot of it flying back and forth to Florida because my father has been having a tough time. And when not there, it felt like I spent most of my time on the phone with doctors, social workers and Assisted Living directors trying to sort things out. My brother also made two trips. But, thankfully, between the two of us, we helped him get stabilized and moved into an ALF where, so far, he seems to be doing well. There are still quite a number of things to be resolved, but the train looks like it has gotten back on track.


On a happier note, my lovely daughter is home, having completed her first college semester! So she is 12.5% done with her degree! It’s great to have the four of us all here tripping over each other in the kitchen, stealing each others’ candy and playing with each others’ holiday gifts!

I hope you all had a great holiday and wish you the very best for 2012. May you all find the perfect balance of friends, family, work and play to make it a terrific year!! BB

The New Normal (aka Nevermind)

The Friday before Thanksgiving, Rob and I met with the surgeon about the procedure to put a stent in my liver. We had quite a long discussion and she showed us the scans from September and last week. It turns out that Vectibix has been so successful at reducing the tumors that she did not feel that it was advisable to do the procedure (even though it was already scheduled for the Monday before Thanksgiving.) While the “before” shot clearly showed three big, ugly tumors that prevented her from accessing the correct bile duct in September, the “after” shot showed not only remarkable tumor shrinkage but the duct obstruction was almost completely gone. As a result, she felt that she would not be able to find the exact spot to place the stent – and evidently they have to be positioned rather exactly. Further, stents don’t last forever. They can themselves become clogged and require intervention and, on the average, are normally only good for 6 to 9 months. So, after some discussion with Dr. S, we decided to forgo the stent at this time and just monitor the situation. Hopefully, in the future, if we can catch a blockage earlier, I can do a stent then.


This Tuesday, I went in for another round of Vectibix, which went without a hitch. Curiously, my billies only fell from 2.2 to 1.8 mg/dl. In fact, there are a number of liver readings still out of whack but it doesn’t seem like there’s anything to do about it at this time. Maybe I will never make it back to “normal” but I suppose it doesn’t matter as long as I have no complications or turn yellow. As a result, I am declaring this fall’s little crisis over – this is the new normal – and I’m back to doing, you know, whatever it was I was doing before my “yellow” period. I’m going to just go on with life with only half an eye fixed on my blood work. And to prove it, here’s a photo of me waiting at a café on 53rd street while they mix my meds!

I hope you all had a great Thanksgiving! I’m sure thankful to have had one – and what a fine meal it was! BB

Nevermi....well, not quite yet....

Robbie and I saw the onc yesterday and got the results of the CT scan I had last Friday. Dr. S was very upbeat, saying that the scan looks very, very good and that my bilirubin level is now down to 2! I was hoping for a 1 (and an all-clear sign), but 2 sure is better than the 32 from last month. He said that the scan shows an area that is still blocked and that he forwarded the results to the surgeons for evaluation. They now say that the procedure which was technically impossible last month is do-able because the tumor shrinkage that Vectibix has provided gives them room to work. So, Dr. S set up an appointment for me to see the surgeon on Friday.


The goal of the surgery would be to insert a stent into my liver to hold open the bile duct. The procedure is “minimally invasive”, using some kind of needle to insert the stent rather than making a big incision. That’s sounds good. Dr. S did not go over the procedure in detail, however, as the surgeon – actually a doctor of “Interventional Radiology” - will explain it tomorrow. Also, it seems that Dr. S feels that the Vectibix alone might actually get me to an all-clear but, in order to ward off problems in the future, I should have the stent inserted now, while there’s room to get it done. Tomorrow I’ll get the full picture of what it’s all about and – I assume – will set up an appointment sometime soon to have it done. In any event, we are very close to getting clear and very optimistic that this will soon all be behind us.

So, it was all good news yesterday and I polished it off with another dose of the hamster juice. I must say that I like the fact that Vectibix is pretty easy on the digestive system. These last few visits, Rob and I have gone out for dinner in the neighborhood after treatment. We’ve hit the tapas place, a new sushi bar and, last night, Chinese (I can now recommend the Taiwanese Mei Fun at “Ginger” on East 55th). Makes the long day of hanging around the clinic seem more worth it!

Staying Moist, Getting Clear

We met with the onc last Tuesday for the usual check up and chemo and the good news is that my billies have trailed down a bit more to about 6 mg/dl. A very good sign but still not quite there. I am hoping that the dose I got Tuesday will be enough to push me clear and I will finally be done with this problem. An added benefit of Vectibix, though, is that it’s much milder on the body than the other things I’ve taken. No nausea or digestive issues – just the rash. And I have found that the antibiotics and the moisturizing do a pretty good job of keeping that at bay. I moisturize now more than a Swedish model…it’s part of my daily beauty regiment!!


Anyway, that’s all good and I hope it will all pay off with an “all clear” in two weeks. This past weekend, however, I did have a physical breakdown where my liver pain flared up as bad as it had ever been and I spent most of the day Monday exhausted in bed. I was worried that it was a sign that the Vectibix had stopped working. But Dr. S thinks that I have an “intratumoral bleed” which is to say that somehow I mashed one of the tumors and it’s acting up. He told me that the pain should subside in 3 to 5 days and that I should not curtail my physical activity – I thought perhaps I did it shoveling some snow last weekend or building a fire when we had no power. He said I could have done it then or by sneezing or rolling over in bed or any of a million other ways. So, I should stay the course on trying to push myself physically. And, I think he was right – the pain has dropped off significantly in the last couple of days.

So, we are still on course…just need to be patient (never my strong suit)…and keep eating, moving about and moisturizing! Hope you have all weathered the big October snows (if you got hit). We had a fair amount of tree damage but nothing major and even got our power back after just one day – much luckier than many friends and neighbors who have only come back online in the last day or so. Enjoy the weekend!

More Good Progress

Had another dose of Chinese hamster juice on Monday and another blood test.  My billies are down to 9!!.....8 more points and I will be clear!!!  Also, on the positive side of the ledger: I put on 4 pounds last week, my strength is better, my mental clarity has come back, my energy is much better, and my cancer pain has dropped so much that I'm not even taking my oxycodone anymore!  All excellent signs that I am going to get through this.  Not out of the woods yet, but I can see the light coming through the trees!!

So, I'm just gonna stick to my plan of rest, germophobia and eating like a Viking at a Smorgasbord!!  Thanks again to everyone for your good wishes.BB

All Hail the Chinese Hamster

I have some good news to report. My first dose of Vectibix has produced some excellent results! I am not out of the woods and frankly I have been whip-sawed so many times this past month by things I thought would work and then didn’t, that I am not yet able to say I know that I will get clear. But I am cautiously optimistic that – with another dose scheduled for the 17th and adherence to my other precautions – I may get there in a few weeks.


Here’s how “progress” is measured: My jaundice is the result of tumors pressing on the bile ducts in my liver. The severity of the obstruction is measured by the level of bilirubin in the blood. A normal bilirubin level is between 0 and 1 mg/dl. If it gets elevated, say to a 2 or a 3, a person will likely jaundice and issues arise, most importantly around getting sepses. When I first jaundiced in early September, my billies were at 8 – a level the doctors were very concerned about. My weekly readings since then were 13, 24 and 32. At 32, the doc switched me to the Vectibix and told me to prepare my family for a possible negative outcome.

This Tuesday, I went in for a consultation and blood work. I felt better and had a lot more energy over the weekend and so, I felt like I’d get a good result. To my great joy, my billies have dropped to 12!! Vectibix not only broke my horrific trend line up Jaundice Mountain but has made a major dent in getting me back to a safe landing. Robbie and I are very encouraged by this initial reaction and I hold out hope that it’s not just a one-time thing. So, I am not counting this as a home run yet, but the ball’s trajectory sure looks good!

As an aside, I did a little research into what Vectibix is. It is a monoclonal antibody, which means that it is engineered to only attack cancer cells. Most chemotherapy drugs attack fast growing cells generally, and since the fast growing/replacing cells of the body include hair, skin, digestive tract and the like, they have side effects like hair loss, rashes, mouth sores, nausea, constipation, etc. By comparison, Vectibix is easier on the side effects, other than the rash. Vectibix attacks the “epidermal growth factor receptors” (skin thingamajiggies?) of cancer so I guess that’s what produces the acne-like rash. But it’s not always easy for me to understand some of the medical jargon they put in the fine print – perhaps I can get my friend Ellen with her PhD in Pharmo-smartocology to explain it to me!

Notably, Vectibix is “produced” in – get this – Chinese Hamster ovaries! How they zeroed in on the Chinese Hamster, I will never know. But I suppose that in China – where I have heard that hamster ovaries are traditionally served with warm brie and a glass of chardonnay (I am told they have a succulent, slightly tangy flavor) – the dish must be known for it’s cancer fighting benefits. Of course, I am taking the Amgen-designed, weapons grade derivative which is a lot more concentrated but this blend of traditional and advanced bio-engineering seems to be working. So, all Hail the Chinese Hamster!! If they get me out of this mess, maybe I could get one as a pet – it might be good karma!

Tipping Point

Well, I have reached a tipping point in my cancer treatment. In short, my health has deteriorated rapidly over the past month. My jaundice continues to worsen as my liver function declines. The drugs I was taking no longer work and the location of my bile duct obstruction relative to the tumors rules out both potential surgical options. Last Tuesday, we stopped my FOLFOX chemo protocol and switched to a drug called Vectibix. It is my final option. If Vectibix cannot shrink the tumors enough to relieve the obstruction, I will be done with the treatment phase of my disease. On the other hand, if it works, the obstruction will clear and that will make me eligible to use a second drug that I have never taken before (but cannot in my current condition.) If that happens, I should have the opportunity to get some effective chemo and (hopefully) a new extension of life. So, there is still a path out of this mess, if I can catch a break. If not, I am uncertain how long it will be before my liver fails. It probably won’t be a lot of time.

So, hope is not lost, but I’m right at the edge of the chasm with one last chance to pull myself back. As a result, the Onc suggested that I prepare my family with the news since any breakdown, fever, failure or other complication may occur on very short notice and have dire consequences. We’ve done that and we are all ready for whatever comes.

I really hope it works. I really want to believe that this will all be a near miss we can laugh about later. But, I have to be practical and so I’m letting you all know as well. And I look forward to the opportunity to write a new entry sometime soon to say “Nevermind!”

On the good news front, after dropping 20 pounds in the last month, my appetite is re-emerging and with a lot of prompting and doting by Rob, I think I’ve got it leveled off. I’m going to work on gaining some of it back. Also, the last two days have been much better in the energy department - probably because of the high calorie food - so I feel much better. The uptick in energy is also very encouraging in that I think, maybe, it’s a sign that I have seen the worst of it.

In any event, the next 2 to 4 weeks are make-or-break. If the Vectibix works, I’m told I should break out in a big acne-like rash over my head, face and torso. So unlike my teenage years, I check desperately every day in hope of finding some pimples! Other than that – and barring any new, unexpected downward event – I just need to be patient and give this stuff a chance to work some magic for me. I meet weekly with the Onc now, with treatment every other visit, and just blood work to monitor my progress on the off weeks.

So that’s my story – any good vibes or pull you have with the Gods of Biochemistry are much appreciated. I hope to write again in coming weeks to let you know its working and this episode was just a scary, near miss. Thanks again for all your support and good wishes.

Update & My Wonderful Wife

I’ve having a slightly energetic interval from this jaundice thing so I thought I would post an update. The side effects from last week’s chemo have pretty much worn off and that is a big help in terms of comfort, but the jaundice really saps me off all my energy. I’m as low on mojo as I have been for years. All I can do is continue to rest and try to eat as rich a diet as I can to get some calories into the system. In the two weeks since I turned yellow, I’ve lost 11 pounds but I have the advantage of deliberately having porked up for the chemo, so I’ve mostly just shed the extra weight I put on as a cushion. If I can get stable where I am right now, it’ll all work out – assuming the J-Train leaves the station sometime soon. I don’t expect to lose my sheen though for at least two weeks – basing that on another round of chemo next Thursday. If I give that round a week to make some tumor progress, maybe things will ease. The hardest thing about all this exhaustion is that you can’t even think clearly enough to get your head around an idea complex enough to occupy a compound sentence. That makes concentrating on even a basic novel a tiring event.

In any case, like I said, I’m having a little lucid time now each day – an hour here or there – and it’s a great feeling!

Most notably, however, yesterday was Robbie and my 20th anniversary! We weren’t able to celebrate it but our trip to Maine last July was our gift to ourselves and it was a terrific time. Marrying Robbie was the single, best decision I ever made in my life. She is the most purely good natured, caring person I have ever known and she has taught me, through her actions, a lot about how to live a happy and fulfilling life. Her energy, patience, kindness, thoughtfulness and (above all) forgiveness are incredible. And you should realize, that living with me certainly requires a high threshold for patience and forgiveness! Everything positive I’ve done since we’ve been together could not have happened without her and my failings are entirely my own. I love her dearly and am only sad that my “condition” has brought us to this often bitter place. She deserves much better.  But when I say to her “I am the lemon in your lemonade”, she replies “Yeah, but the lemon gives the drink it’s flavor!” She is simply the best.

Living Yellow

My long, enjoyable break from chemo came to an abrupt conclusion this week and I jumped back in to the deep end of the chemo pool. I was prepared to get going again and, other than some pain issues, was feeling alright about it. In fact, I put on a few pounds of “cushion” to help stave off the initial weight loss. As it turned out, however, over my last weekend of freedom, I jaundiced – and that has made it quite a bit less pleasant. Doctor S had always warned about the possibility of jaundice and I guess we really did push this thing as far as we could. But, as a result, I was in and out of the hospital from Friday until Wednesday, which has been a strain on everyone. I’m also not out of the woods yet, but with some luck, it will clear and I will just get back to my old chemo regiment.


I did learn a few things about jaundice during all the doctor consultations. Here’s a quick lowdown on what it’s all about. Jaundice is the yellowing of the eyes and skin caused by an increase in the level of bilirubin in your blood. Simply put, when the bile ducts in your liver get clogged and the bile can’t flow, your blood bilirubin elevates and you turn yellow. In my case, the bile duct clog(s) is being caused by the tumor(s) pressing against the ducts. The biggest danger of jaundice is the risk of infection in the liver and blood.

The three options we discussed with the doctors this week to alleviate the problem were a) an endoscopy – where a scope is put down your throat to the base of the liver and a stent put in to open up the bottom of the bile duct, if that’s where the clog is b) a more invasive technique where a needle is put in through your side and a drain inserted to siphon off bile externally, if the blockage is high up in the liver or c) chemotherapy to reduce the tumor size and relieve the pressure. In my case, the blockage(s) appear to be high up in the liver, but their placement, relative to the location of the tumors made it “technically difficult” to insert a drain. The endoscopy docs were willing to try to reach it from the bottom but said upfront that it would be “technically difficult” to reach up the ducts that far with their instruments. Thus, my treatment course is to immediately get chemo and hope that some quick shrinkage of the tumor(s) will open up the ducts.

In the meantime, I need to be very careful about getting an infection – although I am not entirely sure what I can do about that except to stay away from public places. The combination of chemo and jaundice really saps all my energy anyway, so it’s not that big of a sacrifice.

So at the end of the day, I actually did start chemo, as originally planned, on Tuesday. The only change is that I was going to switch to a new drug – Irinotecan – rather than the Oxaliplatin I started with last time. Irinotecan cannot be given to a person with jaundice. So, Oxi it is and I have immediately felt its major side effect – extreme cold sensitivity. As I get more and more of it in the coming months, I will lose feeling in my fingers and toes, just like last time. But – if we can shrink the tumors and I regain a human hue, it’ll be well worth it.

As an aside, to gauge my progress, David and I have been analyzing my color using the Martha Stewart color chart we had left over from painting the den last year. I am a rather attractive shade now, somewhere in the neighborhood of “Ginger Root” and “Tahini.” Somehow I doubt it would sell if she had one called “Jaundice!”

Mother-in-law

It has been a while since I have blogged – mostly because it has been a busy and, frankly, rather stressful end to the summer. Despite late August’s little earthquake and hurricane, which would have made good blogging material, our attentions here have been on my mother-in-law, Pat.

During those little outbursts from Mother Nature, Pat was diagnosed with uterine cancer. She had surgery, which went well. However, the incision site soon became infected and the care for it has been a troublesome complication. She is improving steadily but it is still an issue. Once that problem is suitably put to rest, she will need to start chemotherapy, as the cancer is Stage IV, having spread at the cellular level to some internal tissue.

Pat’s spirits are holding up well, I think, and I am sure that the support she has gotten from her family and many friends has been a tremendous source of strength for her. Every bit counts in times like these.

Pat has always been a terrific mother-in-law to me and a fantastic grandmother for the kids. Her help and support, in particular during these last few years when my health has been sub-par, is appreciated beyond description. I hope that we can provide her with something close to that assistance as she starts her own cancer journey. With a few good breaks, there are still many reasons to believe that things will go well, but there will no doubt be some tough days ahead.

And, like with so many stressful things in life, a little humor goes a long way and we have had some good laughs at the predicament. My favorite so far is a quote from my 8 year old nephew, Nolan. His mom explained the hysterectomy surgery to him by going over the illustrations of the reproductive system in the health textbook he had from school. When Nolan later saw his grandmother, he wanted to be supportive and said “Grandma, I’m so sorry that you’re having trouble with your organ.” Couldn’t have said it better – those pesky organs!

Also – as a goof, Vicki had asked if there was such a thing as a “plush, uterus-shaped pillow” to get for grandma - like the plush heart-shaped pillow my father got from the hospital last year after his open-heart surgery. I scoffed at the idea, but evidently there is! See the picture above….go figure!!

In the future, I plan to blog, from time to time, about how she is doing. As I am coming up shortly on the 3rd anniversary of my diagnosis, I hope that three years from now, I will be sitting here blogging about her 3rd anniversary.

(Still) Summer

Being nearly a month since I last posted, I thought I would make a quick entry before summer ends. I hope you have all enjoyed this season as much as I have.

After our return from Maine, David had some company, which gave us the excuse to take the boys into the city. And, of course, this got us doing things we would not have otherwise – like taking in the view at the Top of the Rock or riding the NY Waterways tour boat around Manhattan at sunset! I also took David and a local friend up to the Cape for a few days to bike ride, walk the beaches and even fit in a whale watch. And what a show that was – the humpbacks danced around us the whole time, breeching and slapping their sides down on the waves, which were rather rough. The boat rocked steeply in a rather active sea – choppy waves of 4 to 6 feet, I guess – which unfortunately left a few passengers green and holding onto their plastic seasickness bags below decks. But we didn’t get sick – I took some Dramamine as a preventative; the boys just declared their love of roller coasters and, as they predicted, showed no signs of wear.

Vicki returned from Ireland - having developed a taste for Heineken (of all things!) – and is alternately prepping for college and racing off to the shore to hang with her friends before they all set off in their own directions. Move in day at Barnard is the 28th and she has informed us of the first commandment of freshmen year: Parents Shalt Not Visit! We are to drop her off, discreetly, and scurry back to New Jersey to await further instructions.

But not to rush you so quickly into fall - there are several good weeks of summer left!! Plenty of time to sit outside with a good book, at the beach or in the shade of your favorite tree as the weather has been very nice. I decided to bone up on some poetry reading this month, just to break up the usual subjects and enjoy the focus on the power of the written word found there. Good poetry is about quality, not quantity after all. Here’s a little item from Charles Simic that I like….oh, and BTW the image above is from a picture I took at Great Salt Pond on Cape Cod (I’m still enjoying that photoshop!)


Bird comforting the afflicted
With your song,
The one or two lying awake
In the vast slumber
Of small town and countryside,

Who know nothing of each other
As they listen intently
To every little tweet
Afraid they’ll do something
To make it hush.

Long Live Summer Vacation

Having raced home from Maine to have a scan and visit with the onc, I was certain that the time had come to buck up and start treatment again.  In fact, all indications were that my "treatment-free" interval was over.  However, despite continued tumor growth and a few failing numbers on my blood work, it seems that there is still some margin for me to stay off the juice.

Dr. S has given me clearance to remain "au naturale" for the summer with a scan and - shall I say certain? - return to chemotherapy in September.  I am glad, and quite surprised, to get the extra time....but boy am I gonna do my best to enjoy this summer!

For any number hounds out there, the larger tumors now measure about 1.8 inches in diameter....BB

Photos of Maine



Portland Head Light


We've made it back from a terrific time in Maine...our goal having been to hike trails, ride on boats, take photos and eat lobster.  I'm happy to report that we got it all done!  It is still busy here as Vicki prepares to leave for two weeks in Ireland and Dave returns from camp to host a friend from Virginia for a week or so. 

In the meantime, I had a scan yesterday and will follow up with the onc next week.  I expect it will be time to go back on the juice - but at least we are fitting in as much as we can before the plunge. 

Just for fun, I thought I'd share a couple of versions of this photo.  I can't help playing around with my shots in photoshop - the above is the original and below are two mutations based on my whim.  The first uses an effect called "Lomo" which replicates the look you get in old postcards from about 100 years ago.  I have a few things hanging in the house that I have "lomo'd".  The other is a different distortion technique I've been playing with to give images a more painterly appearance.  Enjoy! BB



Portland Head Light - Lomo




Portland Head Light B&W Smooth



School's Out for Summer

Finally....it's over!  After a crazy - hectic June, graduation day finally arrived last Thursday! Vicki and her class of '11 had a wonderful run and now they're all back to being lowly frosh in the fall!!

She and we topped it off with a nice party today here at the homestead!

Dave is off to camp tomorrow in New Hampshire and Rob & I are off to a (much anticipated) vacation in Maine.  So, poor Vicki is left to guard the castle and go to work....sucka!!!

Six More Weeks!

I had my follow up yesterday with Dr. S to see if I can stay off the juice until my July scan. I had blood work done last week and it all looked good except for some more increase in my CEA. But, since I feel pretty good and the bloods looked okay (they post them online so I can see them ahead of time), I was pretty optimistic about getting the remaining six weeks off until my next scan. The appointment did not disappoint, so I am free until July!


I have been truly fortunate this past year, with the tumors growing at only a modest rate. The pain has (so far) been manageable and I look forward to getting through Vicki’s graduation and a trip to New England with Robbie in late-June/early-July before the scan. I think we’ve about made it to the end of this road, however, and I doubt there will be another reprieve.

And, it actually didn’t rain yesterday! So, I was able to walk around Manhattan without getting soaked - even saw that big yellow fireball in the sky for the first time since I-don’t-know-when! Like the groundhog, I saw my shadow…perhaps that’s why I got six more weeks!

Maybe I'll build an Arc

Not sure if I moved to Seattle without remembering it but it has been raining here for days and the prediction is that it will continue through the weekend.  It’s a far cry from last week when every day was sunny and in the 70’s!  The big downside of all this rain is that it’s hard to take my daily woods walk.  Besides needing to gear up for the rain, the trails are extremely muddy and in many areas impassable.  Here’s a shot I took yesterday on a very short walk before the rain picked up and I retreated to the car.  The trail was a washout anyway so I wouldn’t have gotten too far….BB    

Just Birds (again)!



Wood Duck

On a lighter note, in my trail walks around Morristown this spring, I have noticed an increase in two species of birds. I have seen both before but not with the frequency that I have noticed them lately. They are the Wood Duck and the Goshawk. The Wood Ducks might be more noticeable because many of the trails I walk cross over lowlands, which have been extensively flooded now for weeks. The larger footprint of water in the woods might be bringing the ducks into better view. Or there may, in fact, be more of them.



Goshawk



On the Goshawk front, I have definitely seen more of them this year than any other. This could be good news since increases in predators are often a sign of a healthy ecosystem. An alternative reason can be that they are losing territory somewhere else. But, since new home construction in this area has been almost non-existent for several years now, I suspect that the increase in Goshawks reflects an increase in small prey animals (like the chipmunks who use my rock wall for a home).

Lastly, I made a new sighting this week of a bird I have never identified before. It is said to be common in the area, but like Goshawks and Wood Ducks, inhabits heavy woodlands and prefers to be secretive. I had never seen one (or frankly even heard of it) but I got a great look at one recently while strolling alone in a dense patch and positively identified it as a Black Throated Blue Warbler. Quite a good looking bird with a call much louder than its small stature would imply.



Black Throated Blue Warbler

So nature-lovers, go stroll your woods, fields and shorelines, perhaps you will catch a glimpse of something interesting!



Replacing OBL

The airwaves this week were full of information and commentary on the killing of Osama bin Laden and the repercussions of the event will go on for some time. It is interesting to note that the killing of the world’s most famous terrorist - and perhaps the most famous Arab of the 20/21st Century - means both very little and quite a lot. There are still thousands of extremists all over the world who were and will continue to be inspired by him. And as a result, our lives will continue to be molded by the need to combat them. Therefore, one could argue that his death really doesn’t change anything.

On the other hand, his defeat has real symbolic and practical consequences for millions of people. Does his demise send a message to his followers about the futility of their methods? How does it change (or end) the mission of U.S. forces in Afghanistan? Does it alter our policies toward Afghanistan? Pakistan? Iraq? Other Arab nations? Do the peaceful pro-democratic movements in Tunisia and Egypt, coupled with bin Laden’s death, usher in a new era in the economic and political development of that part of the world?

I don’t know. But here’s my wishful thinking on the topic. The people of the Middle East have a lot of problems. These problems stem from a long history of colonialism, tribalism, poverty, repression and ignorance. But I think that is changing and the change is being spurred by technology. While military might, the influence of money and the shackles of tribalism still dominate the area, the “Arab spring” movement, I think, shows that even poorer people in the region see firsthand – through internet/mobile technology/social media - the success of countries that were once like them (notably: China, India) and they ask “How come we’re not building our economies and making people’s lives better?” and “What happens to us when the oil money runs out?”. As a result, they may be changing their thinking from one of blaming the West or the other tribe’s sect or Israel and taking a hard look at themselves. And this self-examination has the potential to turn them away from violence-oriented solutions (for who has suffered more from sectarian violence than the Arab people?) and toward true nation building. What they need now is a Gandhi or MLK-like figure to rally people around non-violence and a recognition of everyone’s right to live in peace and prosperity. I hope that person emerges and replaces bin Laden as the most famous Arab of the 21st century.

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!

Back on the Air

It's been quite some time since I have blogged, so I thought I better put something up before you all think I forgot how to write! I returned from Miami and a couple of weeks later went down to Richmond for a long weekend visit. David came along and had a great time hanging with his old buddies as well. We are now planning another trip to Miami for the kids' spring break in early April, and already have a list of things to do that we couldn't possibly fit into the four days we'll be there!


In the meantime, I'm trying to squeeze in as much activity as I can before my next scan. I go back to see the onc right after we return from Miami and I'm pretty sure it will be the end of my "therapy-free interval." So, I have been working on my photography - I've printed and framed a number of things this past month and I bought a package of Photoshop to do some advanced editting. It's an incredubly non-intuitive software, but quite powerful, so I'm hopeful that I can build up some skill at it so I can work on photo stuff even if I'm not feeling well enough to go out and shoot. I've also been finishing up some fiction writing that I started last year.

So, my apologies for the lack of blogging, it has actually been a pretty enjoyable last six weeks or so, and my energies has been mostly focused elsewhere. And for those following the college saga - we expect to have all of Vicki's acceptances/rejections within the next 2 1/2 weeks and April will be the big decision month for her. So far, she has gotten 5 acceptances and no rejections, so we know she'll be going somewhere!

Last Day in Miami

Well, it's my last day at Dave & Joan's wonderful little place in Miami!  I took one last stroll up Miami Beach today - see photos posted under "Miami Beach" above - and then came back for a little nap by the pool.  I'm not particularly looking forward to all the cold and snow that keeps piling up in New Jersey, but I sure miss the family!

I can say this about Miami, though...you should all try it if you get the chance!  The beaches are nice and the water is warm, the restaurants are terrific and the cafe and nightlife on Ocean Avenue is great fun.  I can't think of a better place to be a snowbird!

Miami, Baby

I see on the news that it's still snowing like crazy up north, which makes me doubly glad to be in sunny Miami.  My buddy Frank has been here over the weekend and we've been enjoying the warmth, the natural beauty of the area and the good food.  The South Beach Art Deco area is a real treat!  Great Art Deco buildings line Ocean Avenue across from the beach and they are bustling with cafes and bars.  Here's a typical hotel.

I've also been out taking some pictures down in Key Biscayne and in the park in front of the apartment.  So, I posted another Page above called Key Biscayne/Miami if you want to take a look.  I'm into all the patterns in the trees, leaves, rocks, etc.  There is a lot of color and texture there and, I suppose, it's more noticeable to my eye since everything at home is a uniform field of white!
I'm wishing you all a warmer start to February! BB

Gator Country

As much as the latest storm tried to prevent it, I made it to Miami after only modest delay. Today I rented a car and drove out to Big Cypress, which is part of the Everglades.  The trip passed through an indian reservation, so I stopped and chatted with a native guide who offers airboat tours through the "Sea of Grass".  I may have to go back and try that.

But today, I wanted to take a walk in the Glades.  It was a reasonably warm day - about 70 degrees and sunny.  The glades are absolutely teeming with life, most notably birds life!  I saw hundreds of anhinga and cormorants, which means that the water was full of fish.  There were many different types of wading birds, from the large blue herons and snowy egrets to smaller colorful bank-stalkers whose names I don't know.  And quite a large group of buzzards were scrumming in a field, obscuring my view of whatever meal they were jostling over.

The walk was fun, although the section of trail I was on was rather dry and more brown than green (it is winter after all).  But the water was full of alligators, turtles and fish and the scrubby thickets with small wrens, mockingbirds and quite a number of orange and black butterflies of about 2 inches in width.  I took some pictures which I posted on a tab above.  Hope you enjoy them! BB 

Winter at the Beach

I admit it: I’m not a fan of winter. So, to escape the cold wind (1 degree this morning, predicted zero tomorrow morning), I have planned an escape to Miami. I corralled a friend to join me and, hopefully, will be jetting south on Wednesday morning (weather prediction for Tuesday into Wednesday = ice cold and snowing). Another generous friend has offered the use of their apartment, complete with pool and gym, so how could I say no?!?! I also hope to daytrip over to the Everglades and have lunch with the alligators. But mostly, I’m just looking to do my napping in a place where the thermometer uses 2 digits, and with luck, the first one will be a 7!


How can a guy who doesn’t tan love the sun so much? I guess wonders never cease. Here's a shot of what I'll likely look like when I get there….see, at least I'm smiling!! BB

90 Day Moratorium

I had a scan last Thursday and my meeting with the onc today. I have more growth, as expected. About the same amount as last time. But rather than going straight back to chemo, he offered me the option of holding off a while longer. So, I basically jumped at the chance to wait. He said that my growth rate is “not fast, but not slow either”. He also said that most patients, after having experienced chemo, prefer to delay future treatment! So, we’re going to let it ride a little longer. If I have pain problems or get jaundice, the plan will change, but as it stands, I will it ride for another 90 days and then we’ll do another scan.


I am pretty happy about not having to go back right away. I was rather dreading it. And our strategy is to stretch out the time between treatments for as long as possible since doing so can both prolong my life and make it more enjoyable. So now I can truly say Happy New Year!

Happy New Year

Time to wish you all a Happy and Healthy 2011!  We had some friends over for New Years eve - it originally started as a small gathering but somehow morphed into about 30 guests!  But it was great fun!  Morristown does fireworks at midnight and we have a perfect vantage point from our front windows since we are on the top of a hill.  The 9:15 fireworks show, which is much longer than the midnight display, even rattled our windows! David followed his usual tradition of running outside in his bare feet at midnight but this year decided to take advantage of the snow and sled down the front yard.  It was rather icy and he crashed into the mailbox!  No damage other than a cut on his toe.  The sacrafices he makes for tradition....

I also had another little omen experience this morning.  If you recall, I blogged about omens about a year ago.  The spirits were crows (a symbol of change) and pileated woodpeckers (a symbol of opportunity).  So, when I went out this morning to get my newspaper from the end of the driveway, I was greeted by a flock of crows caw-ing their heads off in a tree beside the driveway.  Then I heard the thump-thumping of a big Pileated Woodpecker.  He was a particularly big one, banging away at the tree holding the crows. Once again, I must say it's odd that this was my wake up call on January 1.  But in the spirit of mysticism, I hope that whatever changes come your way in 2011 will be new opportunities.  And that you are happy and successful in all your endeavors!  Happy New Year!

In the spirit of change, I'm trying a new trick with this post.  I uploaded a video of the fireworks last night rather than a picture!