Round 12

Went to the city yesterday for Round 12. It was a pretty routine visit other than my meds came up from the pharmacy quickly so we got to take an early train home. I also have an appointment now for my next scan (on May 7th). I’m hoping for more tumor stability which would be an indication of what we used to call “remission” when I was a kid. Now they call it a “progression-free interval”. I have come to despise chemo but when in a long fight, you gotta keep on swinging. My next treatment will mark six months of the stuff - at least the weather is warm so I'm not always freezing!

Also, here’s a link to an interesting article from the NY Times today – it quotes my oncologist extensively towards the end.

http://www.nytimes.com/2009/04/24/health/policy/24cancer.html?ref=todayspaper

Puerto Rico and Round 11

After the fun of Richmond, I went for Round 11 on April 9th. This time I insisted on coming off Avastin because the fissure wasn’t getting better. So I’m now off of it. Again, it was a pretty routine treatment – just a long day in the city with a lot of waiting for an open chemo chair.

Vicki joined us since it was her birthday and she wanted an “independent day in NYC”. So, we gave her some geographic limits (from the Central Park Zoo down to 42nd between 2nd and 9th Aves and no riding the subway) and away she went. She met us back at Sloan Kettering after wearing herself out being a girl about town. And, she brought us some chocolate from the M&M store on 7th Ave!

On the off weekend, I went to Puerto Rico for 6 days. My guy friends in Morristown and I (5 of us) borrowed a beach house of another friend and had an awesome time. Rob referred to it as a frat brother vacation. Puerto Rico is a beautiful island and we had a great section of beach almost to ourselves (see photo above). We did a bunch of research on places to sightsee but the call of the ocean got the best of us! Each day, the prediction for the following day would be rain so we’d beach it and plan to sightsee the next day. But then the next day would turn out to be just as beautiful so we’d beach it again.

For you beach lovers, the temperature every day was about 85 and we had a nice ocean breeze! So, we'd swim and nap under the coconut trees pretty much all day. And, our house was just across the street from the beach so it was a short walk. In the evening, we’d go out to dinner in Dorado (the town where we stayed – about ½ hour from San Juan) or we’d go into Old San Juan for dinner and drinks. One evening, we hit a casino in one of the San Juan hotels and I even won $120 playing blackjack. It was a great getaway with the fellas!

Richmond and Round 10

It’s been quite a long time since I’ve written so I will make several entries today starting with Round 10 which was back on March 24. The chemo was pretty much routine. I didn’t see my regular onc but got a substitute. I asked him to take me off Avastin to let my fissure heal (Avastin suppresses healing) but he didn’t want to change the protocol of another doctor. So I agreed to take another dose.

On my off weekend (which is at the end of the two week cycle), our family went to Richmond to see some friends. It was the kids’ spring break so they were up for a long weekend. The kids got to see their old school chums (in fact, David had a sleepover just about every night we were there). We got together with a couple of families for dinner and I saw my former colleagues from Genworth. It was a great weekend and we even snuck in some good southern barbeque!

We got home in time to host both Passover and Easter at our house. I enjoy the holidays because they always involve good food and family time. I made a new gefilter fish recipe which my 6 year old nephews actually liked! They thought it was chicken! So that was a culinary success for us. In all, it was a very good week.

Spring is Springing

Despite this morning’s snow (yes, snow!), today is the first day of Spring – which is the season of hope and new beginnings. Signs abound that spring is here. My daily walk in the woods has been very quiet all winter with the crunch of my feet on snow or slurp of my sneakers on mud being the only sound. But this week, the hills have come alive with the sound of birds. From the peeps of nuthatches with their curious posture of walking upside-down on tree trunks to the throaty call of woodpeckers to the constant chatter of crows, I hear spring everywhere. Today, I passed a large collection of crows in the woods – perhaps 100 gathered deep in the woods - as if having their spring crow convention. I saw this same sight several years ago in the same spot – I wonder what they’re all squawking about and why they gather in such an isolated spot?

In the pond near our house (Burnham Park for you Morristowners), the ducks are pairing off. Curiously, there are six males vying for two females (and one seems to have paired off already) – so it’s ladies night for the ducks of Burnham Pond! I’ve also noticed a beaver in the pond – first I’ve seen (but, as the expression goes, he seems quite busy)!

In the spirit of the season – and with the arrival of more sunshine and warmer air – I’m feeling hopeful. Perhaps I’ve survived my winter of discontent, and it’s time to start the spring cleaning – both physically and psychologically. Even with all the bad stories on the news – from unemployment to AIG to Bernie Madoff – now is a good time to put that aside and plan for a new beginning of (hopefully) better days. Tis the season…

And most of all, I wish you all the best – you’re awesome! Your support has been my fireside over this long winter…BB

Why Insurance Matters

In these tough times, among our other economic problems, there has been the beginning of a national discussion about healthcare. Since I’m now a “heavy user” of healthcare, I thought I’d share some prices with you and some thoughts about them. Here’s the skinny on what cancer has cost over the (almost) six months since my diagnosis:

My surgery was laparoscopic (less invasive and leaves a smaller and more beautiful scar), and included 5 days and 4 nights in the hospital (all meals and recreation included). It cost about $40,000. That’s a “top line” number – meaning that’s what the hospital and all the various doctors and tests originally charged. The insurance company rarely pays this amount, usually taking a bit of a haircut. In fact, one bill, included in the number, was incredibly reduced. It was for the insertion of a stent and was billed at $3,000. The insurance company paid about $200! But in most instances, the insurer paid a much larger percentage of the bill.

My chemo and all the associated doctor visits, blood work, scans, etc that come with the treatment plan has cost about $145,000 so far. In addition, I’ve had two separate nights in the Morristown emergency room. The first cost just shy of $5,000. I haven’t gotten the bill for the second, but it will probably come in about the same since I got scanned both times. I have one chemo treatment left before hitting the 6 month mark, which will cost about $6,600, so my 6 month total of chemo plus the ER visits will come in at a little over $160,000! Incredible….

So, why is chemo so expensive? The core treatment for my cancer is the drugs 5FU and leucovorin (which is basically a vitamin). Combined, these meds cost $84 per treatment. Bear in mind that 5FU was invented in the late 1950’s, is very widely used, and is (no doubt) out of patent protection. Oxaliplatin, which I took for the first 6 treatments, is a “new” drug. I’m not sure when it came out but it was within the last 10 years or so. It cost $6,000 per dose. My additional drug (on top of the 5FU/Leucovorin/Oxi protocol, which is known as FOLFOX) is Avastin. Avastin is also a “new” drug and costs $4,300 per dose (and gave me a fissure!) Clearly something is amiss with the economics of the pharma industry when these new drugs cost so much. I understand that they need to recoup the R&D but these prices are incredible!

I also wonder what the “true” cost of the doctors, scans, pathologists, etc is. It seems that they all inflate their costs because they know the insurer is going to only pay a certain amount and they want to make sure their “ask” is higher than the limit. What would they charge if this system didn’t exist?

Now here’s the public policy part – from what I have read, there are about 150,000 cases of colon cancer diagnosed every year and 50,000 deaths. Many of the diagnosed are in lower stages of progression and likely only have 3 months of chemo after surgery. If $40,000 is an average surgery cost and six FOLFOX treatments ensue (at about $14,000 per), then these folks’ treatment plan cost about $125,000. For higher level patients, like me, who will be on chemo for at least 9 months, then the first year of treatment plus surgery comes in at about $200,000. Assuming 50/50 lower and higher need patients, the average first year cost about $160,000. Multiply that by 100,000 (net new cases), and the total cost is $16 Billion! Cut that by perhaps 25% for what the insurers actually pay and you still get $12 BILLION! Per Year! And that doesn’t count treatment beyond the first year or for those who pass away! Now, if colon cancer was a Wall Street firm, perhaps we could get a bailout…but there are plenty of other types of cancer to pay for!

So, the messages of the day are – 1) Thank God for health insurance and 2) What do all those folks do who have no coverage? Do they refuse treatment? Do they get treatment and not pay?

This is why insurance matters…

Round 9

Today was juicing day. Also, I had a CT scan last week to check on my progress so I got the results. And, of course, I spoke to the doctor about the fissure. That’s fissure, not fisher – anal fisher would be a whole different thing!

On the scan front, my lesions did not shrink or grow. They are the same as two months ago (when they had retreated 50% from pre-chemo size). Dr S didn’t seem too concerned about making no progress because he said they’re not very big to begin with. So, we’ll stay the course.

On the fissure, Dr S said that this is a common side effect of Avastin. He said if the cream doesn’t work, he wants to speak to my GI guy before we take any other action. He can take me off Avastin which should aid healing but Avastin’s “half life” is about three weeks so I’d need to be off for about 6 weeks for the drug to clear my system.

On a good note – no delays today so I sailed through treatment and we took an early train home. For you New York-o-philes, there was an excellent guitar player on the train platform at 53rd & Lex. I haven’t seen him before. He was a Hispanic guy of maybe 50 or 60 who played a right-handed guitar left handed! He sang unbelievably well (all in Spanish so I don’t know the songs) but he should be on stage somewhere – got some good donations, too. You gotta be good to get the average NYer to throw a buck in your hat since platform musicians are so ubiquitous!

I also saw the first mullet I’ve seen since 1989! On the train, there was a guy with a good size mullet and double earrings (dangly) in his left ear. He must be playing with some 80’s cover band! Or, he’s been in a coma for 20 years!

OK, so that was juicing day…hope you all are well…BB

PS - This is a famous Yankee - can you guess who he is?

Pain in the A**

WARNING: This blog entry will include words like sphincter and anus and may be “too much information” for some readers. So, if that’s the case, feel free not to read on.

I am writing about (yet) another side-effect. Most people don’t like to discuss issues that relate to the bowels. But when I started this blog, I decided that I’m not going to be embarrassed by issues of biology that I can’t control. I can only focus with how I deal with them. So in this case, the issue relates to the anus.

About two weeks ago, I started experiencing a lot of pain during bowel movements. It pretty much felt like I had eaten broken glass and was passing it. Some of these movements were accompanied by some blood. So last week, I went to my regular physician to see if, perhaps, I had a hemorrhoid problem. He couldn’t diagnose it but thought it might be an “anal fissure” so he referred me to a specialist.

The specialist was the same doctor who did the colonoscopy that discovered my cancer last fall. He was also the guy who had the unfortunate task of telling me I had cancer (which must be a tough thing for doctors to do). In any event, I went to him today. His exam concluded that I do have a fissure which is doctor-speak for a tear in your sphincter. Pretty unpleasant.

There are three therapies for anal fissures. First, there is a cream you can try which helps promote healing. The next choice is a shot of botox in the anus (which I think would mean I would look a bit like Angelina Jolie if you catch me at the right angle). Lastly, there are surgical options. I’m starting with the cream as a shot in the rear sounds rather unpleasant. If I do have to go that route, I would need to go back to my colonectomy surgeon for it.

In any event, anal fissures are evidently not that uncommon and whether my chemo treatments (which reek havoc on your digestive system) were a cause is inconclusive. So at the end of the day, this issue is just another pain in the a** that comes with the territory.

Tomorrow is round 9 of chemo so I’ll fill my onc in on what’s going on and see what he thinks. I hope you all are well. BB