Monday, June 26, 2017

Heading towards surgery

On Tuesday morning, the 6th of June, my wife and I walked the long walk to Sloan Kettering.  My day was going to start with a CT scan.  I was a bit disappointed to have the dietary restrictions that I had, given that it was my wife's birthday, and I would have loved to taken her out for a nice breakfast, but food and abdominal CT scans don't work together.

The first thing that Sloan Kettering wanted to do was draw blood to determine my kidney function.  This is essential to get the correct dose of IV contrast dye - an injected material that is tough on the kidneys, and I only have one kidney.  But, I'd just had a serum creatinine test in VT, and asked them if they'd accept that test.  They said if I could forward the results to them, they'd be happy to do that.  I was able to use the UVM Medical Center patient portal to pull my prior result and forward it to the nurses at Sloan Kettering, so I saved myself one needle stick.  Given how the next week would go, one needle stick saved was essentially meaningless, but I was glad to do it.

I was disappointed when they refused to use my Power Port for the contrast injection.  Part of the reason for getting a power port was that they can be used for CT scans, but I apparently needed some paperwork with me in order for them to do that.  So, one needle stick saved and then I had to have an IV rather than use my port.  Net zero.

After the scan, we had a couple hours to kill.  I was able to get some coffee and my wife got some breakfast, but I have to admit that I was too nervous to eat.  I got within days of this surgery in February, when a CT scan showed new tumors, and changed the direction of my treatment.  Although I'd had a decent response to the gem/tax chemo, it hadn't been overwhelming, and the possibility of new tumors or larger tumors really had me scared, even this late in the process.

As usual, Dr. Singer was late, but while we waited in his waiting room, I got to meet an online friend face to face for the first time.  We are both on a Facebook group called Liposarcoma Survivors, and she was one of the few people I'd friended outside of the group.  Her appointment was before mine, which cut our conversation short, but it was really nice to meet her in person.

Finally, about 90 minutes late, we got in to see Dr. Singer.  His office days (he's only in his office one day per week) must be exceptionally long.  His first appointment for the day is at 7:30 or earlier, and he falls so far behind schedule that he must work until at least 7:00 in the evening.  This is one of the things I love about him.  He is a world-renowned specialist in an orphan disease, and he never shirks what he has taken upon himself.  I think he knows that an entire community depends on him, and he goes out of his way to be sure he gets to every patient.

He didn't have much to say this day.  I have to admit that didn't make me feel super optimistic.  He still wanted to move on to surgery, but we spent a fair amount of time discussing the healthy tissue I would lose along with the tumors, to ensure that he got clean margins.  He is always up front about this, and I have permanent numbness in my abdomen and right quadriceps due to his surgeries.  But, I've never had something like this show up without prior warning.  So, I always have the information I need to back out if the side effects seem too onerous.  Of course, one of the side effects of no treatments is rather dire, so I always proceed to surgery.

After our appointment, I had to go upstairs for my final pre-op testing.  This is getting routine for me here - my third time through the process.  And, about 5:00, we were free.

This gave us just enough time to head to our hotel, get cleaned up, and walk to db Bistro Moderne, where we would celebrate my wife's birthday.  That day's dinner had two benefactors.  My wife's co-workers had given her $300 in Visa gift cards to celebrate her birthday in the city.  And, one of my blog readers and a good friend from high school (if anyone remembers my night in the Waldorf Astoria a year ago, it's the same friend) had offered to treat us to some really nice wine at dinner.

We have eaten at Daniel Boulud's flagship restaurant, Daniel, way back in the fall of 2000, right before I ran the NYC marathon.  We'd been warned that the Bistro was quite expensive, but we were pretty shocked by the prices.  This restaurant is best known for its foie gras and truffle burger, that sells for $35.  At that price, it was far from the most expensive entree on the menu.

Because of my friend's generosity on the wine, we started with 2002 Bollinger RD, one of my wife's favorite Champagnes.  It listed for $315 on the list, but we were really shocked a few hours later when it showed up on the bill at $479,  This was quickly corrected.

The Champagne was amazing - everything an RD should be and we sipped it slowly as we looked over the menu.  My wife opted for a torchon of foie gras to start and it was an absolutely amazing dish - the best dish of our trip.  Because I'd had foie gras the night before, I went with a lobster salad, which was nice but lacked a bit of excitement.  Just a little bit more lemon or maybe some sherry vinegar would have brightened it a bit.

For entrees, my wife went with Steak Frites, while I went with Coq au Vin - two bistro classics.  Both were done exceptionally well, although mine was rich beyond belief.  By now, we'd finished the Champagne and my wife had a glass of red wine while I'd decided I'd imbibed enough.

For dessert, my wife ordered some Madeleine's, while I passed.  What my wife didn't know was that I'd informed the restaurant it was her birthday, so she got a personalized dessert on the house plus the Madeleines.  The latter became breakfast with coffee the next day.

Finally the bill arrived, it was pretty outrageous.  Even after we got the error fixed on the wine price, it was still almost $700 with tip.  How can a restaurant be considered a bistro with prices like that, I wonder. However, thanks to the generosity of friends, the meal cost us less than $100, which made me worry a lot less about the price.

As we walked back to the hotel, I knew I'd eaten my last meal for about a week, but it had been a good one.

That's enough for today.  Tomorrow, I'll write about the pre-surgery prep day and the surgery itself.

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