Tuesday, July 25, 2017

CrossFit

The things I complain about week after week continue to improve.  I'm getting by on less and less sleep, although I feel like I could always use more.  I am still taking naps at times.  My appetite continues to improve and is pretty close to normal.  I still have some night sweats, but they seem to be getting better as well.

But, the thing I'm most excited about is going to CrossFit yesterday.  Ideally, I should have waited until 2 full months after my surgery, so I'm technically about 2 weeks early.  There are clearly some things I still am not ready to do (box jumps, burpees, etc.), but I feel I can do most of the movements, with light weight.

I also do the workouts in compression shirts at times.  After losing some of my psoas major muscle in my previous surgery, the shirts seem to help with overall core stability.  After losing more of that muscle in the latest surgery, I ordered two more compression shirts yesterday.  I think I'm simply going to need them all the time for CrossFit, moving forward.

Last night we started with 5x7 back squats.  I knew that after not squatting for 8 weeks, I was going to end up being sore today no matter what weight I chose.  I chose very light weights (85 and 95 - about 25% of my lifetime best), and I'm still sore today.  Oh well.

Next, we had reverse lunges with 2 barbells in the rack position.  I completely skipped this segment of the workout.  If I hadn't, I probably wouldn't be able to walk today.

Then, a 10 minute up ladder of 3 med balls over the shoulder (50# ball) and 20 rope jumping reps.  The second round is 6 and 40, then 9 and 60, etc.  I completed four rounds, 15 more balls over the shoulder, and 33 rope jumps.  I have no idea how that compares to anyone else.  I was just glad to be there.

My basic goal is to only do CF on MWF for a few weeks.  I don't want to do 2 days in a row for a while.  I'm also roughly targeting to do a 50% effort this week, (hence the skipped lunges and the slow, steady pace for the second half of the workout), 60% next week, then increasing by about 10% per week until I'm back to going hard.  That should take me until the first week of September or so.

Today is a rainy day, so while my wife does CF tonight, I'll walk on the treadmill.  I haven't even looked at the workout for today, but I know I don't want to do it.

Monday, July 17, 2017

Update

I listed four key problems in my last post.  Four things where I really wanted to see some improvement.

First was my appetite.  In the past week, I have been eating more real food and relying less on shakes made with ice cream and Ensure.  I will admit that certain foods, especially cooked veggies, still aren't very appetizing.  But, proteins, some carbs, and salads all seem to be going down better.  On Saturday, we went to a concert in Boston and visited a fantastic restaurant called Row 34 for a late lunch.

My wife and I shared 18 oysters, I ate a very rich lobster roll, and I even helped my son finish his fish and chips.  Plus, I had a glass of wine - my first adult beverage since surgery.  While the food did seem very rich, it went down just fine and it was nice to eat such a high quality meal.  Of course, if you pay close attention, I had no cooked veggies.

Sunday for lunch, I went to Shake Shack beside our hotel and had a shake and a burger.  I wasn't surprised at all that this went down just fine.

Secondly, I was complaining about how much I was sleeping, with some nights being 14-16 hours of sleep.  I did sleep 10.5 hours on Saturday night, and would have slept later but the hotel had a checkout time.  And, I did take a 3+ hour nap that afternoon.  But, I am not sleeping as much during our commute.  I stayed awake the entire drive this morning.  Getting out of bed for work is getting easier.   And, my total sleep time is decreasing, although I was over 8 hours every night for the past 10.

Thirdly, I complained about lack of desire to exercise.  Last week, I just started forcing myself to get out and at least go for a walk.  I walked 5 of 7 days leading into this weekend, and then walked quite a bit in Boston on Saturday.  I have to admit that my back is a bit sore when walking and I'm hoping that will improve as soon as I start lifting.  It is still my goal to resume CrossFit a week from today on 7/24.

Lastly, I had complained about night sweats.  They are markedly better.  I think I've gone four nights in a row right now without changing my pajamas.  I was sweating a bit last night, but it honestly wasn't too bad.  Hopefully, this trend will continue.

So, I'm making progress in all four areas where I said I needed to do so a week ago.  That's good news.

On the other hand, I got my post-op pathology report on Friday and that wasn't such good news.  The chemos I've done have had two primary goals.  The first has been to shrink tumors to make it easier to remove them.  My first chemo did this very well, and the second showed only moderate success.  The second goal was for the chemo to kill the more aggressive and dangerous cells in my tumors, hopefully reverting the disease to a less dangerous form.  The report I got on Friday showed that this simply isn't the case, and this report showed more aggressive cell types than after my surgery in March of 2016.  This is very disheartening, to be honest.  I've sent an email to my surgeon's office, trying to get more information from him on what this really means for my prognosis and treatment going forward.  I haven't heard anything back yet.

Hopefully, this morning's thunderstorms are over and I'll get to walk while my wife does CrossFit tonight.


Tuesday, July 11, 2017

Slow and Steady Progress

First, the bad things, some of which are repeats from my last post:


  • I still have no appetite
  • I have no energy and I'm sleeping 14-16 hours per night on the weekends
  • I have very little desire to even go walking, much less any other exercise
  • Night sweats are still an issue


And, while it's not quite the same, I still haven't gotten out fishing.  But, that's a combo of fatigue and weather, not just the fatigue.  I would have fished this past Sunday if the weather had been better.  Part of the fishing is that I either need to fish in very low water flows if I am using any pain medicine at all, or I have to have the strength and ability to fish without pain meds if the water is higher.  We just haven't hit the ideal point yet.  I'm not willing to risk becoming a drowning statistic because I insisted on wading under the influence of pain meds or in current that was too much for my current strength.

On the other hand, my hair is growing back at a fairly rapid clip.  The hair on my head is still pretty thin but growing rapidly.  I may need to get my hair trimmed soon.  My beard is patchy, but is mostly back.  Even those annoying nose hairs are back.  I didn't miss them during chemo.  Below the neck, body hair is returning, but at a very slow pace.  This isn't really an issue or a complaint.   I think it tells me that I'm still dealing with some after-effects of the chemo, but those are fading over time.

I am gradually decreasing my pain medicine, which has been a goal.  I must admit that where the surgeon removed another good chunk of my right side psoas major muscle, I am having issues.  Just a 3 mile walk is simply painful due to this.  I am guessing that my baseline after this surgery will be a higher level of pain than before.  I'm also afraid that having lost a lot of such a key stabilizer muscle is going to have a profound long term impact on both running and lifting.  I can't imagine being able to get my full strength back for hip extension, which is needed for running, the deadlift and the squat.  And, I'm guessing that each workout will have me in worse pain now than I was before this latest surgery.  But, until I actually pick up a barbell, I can't know for sure.

I hope to get back to CrossFit at a very easy level, in 2 weeks or so.  I am already anticipating that the first month or two will be very trying.  I'm simply going to be a lot weaker than I was, and this will be frustrating.  And, it may be painful.  it will certainly be difficult.

As for the bullet points, above, I'm doing my best.  I weighed 225 or just a bit higher when I started chemo in February.  I got to 215 before surgery.  I got home from surgery at about 205 (I still haven't seen the pathology report to know how much the tumors weighed, and that's likely part of the weight loss).  But, I've dropped to 195 since getting home.  Literally no foods taste good.  My oncologists both locally and at Sloan Kettering have given me some tricks to arrest the weight loss.  I'm having shakes almost every day made with ice cream and Ensure.  That's a fast way to get in 1000 calories.  Salads taste OK, so I'm having them and putting a lot of dressing on them.  Fruits taste OK, so I'm eating them.  But, the everyday meals that I'm cooking (or that my wife is cooking) aren't very appealing.  Sometimes, I manage to eat the meal, but sometimes not.

A few people have asked me about medical marijuana and if it's helping me with my appetite.  It does help, but to be honest, I'm not using it as much.  The extra pain medicine plus the medical MJ are just too much for my brain.  I don't want to be that "altered" and when I mix the two, I do end up eating, but I also end up just lying on the couch for hours, which I'd rather not do.  I'm hoping that as I continue to decrease the pain meds, I'll take more medical MJ, and that will help with appetite.

I don't know what to do about the sleeping and energy levels.  In the past, after surgery or chemo, I was always ready to go for a walk as soon as possible.  I needed to do something every day.  I just don't feel like that right now.  According to my FitBit, I've slept 15 hours or more 4 days in the last 10.  I think the smart thing is simply to sleep when my body wants to sleep.  I came back to work a lot sooner than most people would have from this surgery, and by the time the work week is over, I think I simply need the rest.  So, I'm going with it and hoping it gets better.  I'm also sleeping on the way to and from work.  That's two hours per day (my wife drives) when I normally work or just surf the web.  But now, I'm sleeping.  I'm hopeful that as my nutrition improves, my energy levels will improve as well.

As for the walking and other movement, I'm simply forcing myself to do it.  I've walked the past 3 days right now.  I'm actually a bit sore from it, but I'll probably walk again tonight.  I don't see any reason that an easy walk for an hour is going to hurt me.  At least, I hope not.

Night sweats really suck.  I've tried sleeping with and without the air conditioner and that's made no difference.  Twice last night, I woke up and changed my pajamas.  When I go to bed each night, I am sure I have 2 spare pairs of pajamas nearby, so I can switch if needed.  I'm sure this will pass with time.  I think my wife may have joked that it's menopause, which she is regretfully dealing with full on right now.  Maybe so...

Lastly, I'm trying to be myself again.  I'm a person who prides himself on making his wife laugh.  I don't seem to make that happen very often these days.  I'm someone who finds pleasure in mundane activities, like shopping for groceries, cooking dinner, or just going out for breakfast with my wife and daughter on the weekends.  I'm trying.  I really am.  I feel like I'm doing better at work, because I feel I need to keep the bosses convinced that I'm OK.  Our company is in a funding crunch right now, and I simply cannot appear to be a weak link.

I need to harness some of the energy that my company is getting and give it to my family.  My family is more important by far, although I have my reasons for working very hard right now.  Finding a new job right now would be very challenging, and I like my current job.  So, I don't want there to be any doubt at work that I'm fit and ready to go.  As my energy levels return, hopefully, I'll divert more and more of that to my family.

Thursday, June 29, 2017

Finally Caught Up

I had my staples removed this morning.  The infection had healed enough that the surgeon I saw thought it seemed prudent to get the staples out.  I'm happy because this will allow me to start walking on a daily basis for exercise.  The past week, the staples have been too uncomfortable to walk very far.  They had been in there for too long and simply caused pain when walking, unless I was shirtless, and I try to to scare the general public like that.

It's probably still 3-4 weeks before I can start any real training in the gym, so just being able to walk without pain is a big deal.  Now, if the weather would just cooperate and stop raining, it would be easier to get outside and walk.  I was hearing thunder as I typed that last sentence.

I did have a minor issue with insurance on this last trip, and my insurance company initially tried to deny paying for the surgery.  They told me this on the day of the surgery itself, although I didn't see the letter until 10 days after that.  The cost of the surgery and the hospital stay, including scans 2 days before the surgery, easily exceeded $100K.  Imagine finding out the day of surgery, when it's too late to really do anything, that your insurance might not pay.  I'm glad I didn't see the letter until 10 days later.

Apparently, the surgeon gave them a good answer, because they quickly agreed to pay, but I can't risk that they will actually refuse a payment in the future.  My ongoing health depends heavily on being treated at Sloan Kettering, and I need to make sure there are no problems in the future.  So, I am trying to have the two organizations work together to permanently resolve this issue.  Or, at least that's what I hope can happen.

Today, I resume seeing my therapist.  She is  wonderful lady who only sees cancer patients, and I really enjoy the time we get to spend talking.  But, other than seeing her and getting my chemo port flushed periodically, I am hoping that I'm not going to see many doctors until October.

In the next month, these are changes I hope to see that will tell me my surgery and chemo are  behind me, for now:


  • Hair returns to my body.  It may end up being white or greyer than it was, but at least it should grow back.  Right now, I swear that I look 10 years older than I did just 2-3 years ago.
  • My appetite returns.
  • I get back out on the river fishing,
  • I get back to doing CrossFit.
  • My fitness improves and my resting heart rate decreases.
  • The night sweats end as my body continue to recover.
  • I return to the level of pain medicine I was using before surgery.
  • And, most importantly, I find myself smiling and having fun on a daily basis.


Then, hopefully a clean scan in October, and it's on to ski season!

Wednesday, June 28, 2017

Coming Home

The very last part of discharge from the hospital is medications to take with you and discharge instructions.  They always seem to take forever at Sloan Kettering.

At the time of discharge, my prescription for pain medicine was 10-15mg of oxycodone every 4 hours (as needed).  When they handed me my prescription, it had the same instructions.  But, the bottle contained only 20 pills - 100 total milligrams and the label said it was a 3 day supply.  This was not the first time that they had given me way too little pain medicine on discharge, and rather than argue, I decided to just get out of the hospital and then talk to my surgeon's office the next day about the issue.

I had arrived at the hospital with about 50 x 5 mg of oxycodone, so I knew I had enough in total for 3-4 days, so I wasn't too worried.  The discharge nurse immediately recognized the discrepancy and gave me a 15mg dose just before I left.

As I left the hospital, because I was alone, the hospital had to follow some protocols closely.  I had limitations on how much weight I could pick up, and they didn't want to turn me loose into the streets with a suitcase and computer bag.  If I'd had a problem, they would have been responsible.

So, I was wheeled to the exit in a wheelchair.  From there, security called a car service - twice the price of a normal taxi, but with better service, including handling your bags for you.  It took a while, but I was finally free.

I got to my hotel and tried to just lie down for a while, but things were different.  After almost a week in an infinitely adjustable hospital bed, it was nearly impossible to get comfortable in a regular bed.  I finally found a comfortable position and slept until the pain medication wore off and the pain woke me up.  By now, it was 6:00, and I decided to take some more pain medicine and look for some dinner.  Regretfully, in two laps of the local block, absolutely nothing looked good.  I finally settled for some shrimp pad thai, and to be honest, it was basically the worst pad thai I've ever had.  I ate half a dozen bites before giving up on eating.  I'm amazed sometimes at some of the restaurants that survive in NYC.  On my last surgical trip, I had a pizza delivered and it was honestly the worst pizza I'd ever had.  How can a bad pizza place survive in NYC (and how did it get 4 stars on Yelp)?

After that, I got my bags ready for the trip home and got ready for some sleep.  I'd found a single position on a regular bed that was comfortable, and I had to get into that position and simply not move or I'd end up in pain.

I watched a TV special about the Lakers-Celtics rivalry from the 1980's as I dozed in and out of sleep.  It's a really good short series that ESPN did, and I learned a lot about that storied rivalry - stuff that we would know in the internet era, but was never really well known in the 1980's.  Finally, a dose of pain medicine about 10:00 put me off to sleep.  I woke up about 2:30 to take some pain medicine and again at about 7:00.  At 7:00, I took some more pain medication and decided to get myself ready to leave for home.  I had plenty of time with an 11:30 train, but I didn't want to risk missing the train, which would have forced me to change my destination from my hometown to Albany instead.  Going to Albany would have meant a six hour drive for me wife, so missing the train was just not an option.

I was in a cab by 9:30, and it took almost an hour to cover a mile or so to Penn Station.  The traffic was crazy and my so was my cabbie.  He was so aggressive and obnoxious that another driver deliberately hit him part way through the trip, after my cabbie cut the other car off very badly.  For a while, I was afraid I'd never make the train on time, and I was certainly glad I'd opted for the early start.

Finally, we got there, and I looked for some coffee and something that I could eat on the train later in the day.  Regretfully, no food sounded good (a problem that persists still), so I just went with coffee.

My train was a bit late, but I finally got on board and settled into a seat.  From here, I knew I had an easy day.  I opened my laptop and for the first time in a week, and I started working.  It honestly took the majority of the day just to catch up on e-mails.

Around lunchtime, I was hungry, but the only food in the bar car that sounded appealing was peanut M&Ms.  So, my lunch was that plus water.

Early in the afternoon, I got a phone call from my surgeon's office, just checking up on me.  I told the NP that I talked to about the problem with the pain medicine prescription. She said that it was a gross error, and offered to get me a prescription in Vermont.  However, the two states (NY and VT) have very different rules about pain medicine scripts.  In NY, everything is electronic.  In VT, everything must be done on printed and watermarked prescription paper.  We were unsure how to get a script from NY to VT.  So, I told the nurse that I'd talk to my primary care provider the next day to see if she could help.  It turned out that she was out of the office the next day, but the physician covering for her took care of everything for me, and pain medication was no longer an issue. I could write pages about this process and the issues I've encountered the past few years.  As a cancer patient, I have an easier time getting pain medications than most patients do, but the current backlash against opiates makes it tough for many patients to get medications they need.  Not every patient gets addicted, and in some cases, opiates are the correct medication for the situation.  I honestly worry that even as a cancer patient, the day will arrive when appropriate pain medications will not be available to me.  To be honest, that scares me more than the cancer itself in some ways.

Bit by bit, we made progress towards home.  We ended up being a bit late, but I was off the train in my hometown by 7:15.  We made it home in a few minutes and I immediately changed into pajamas.  As I changed, I decided to weigh myself.  I was at 205.

When I started chemo in February, I was at just over 225.  When I left for NYC, I was at 215.  My appetite still has not returned, and this morning, I was at 199.  I recently read an article about weight loss in patients with advanced cancers (and I'd be foolish to try to pretend this isn't an advanced cancer) and how even overweight patients tend to fare more poorly if they lose weight due to treatments.  Right this minute, my lack of appetite and ongoing weight loss are my biggest concerns.  I am positive that a lot of the weight loss is muscle mass because I can't lift weights right now.  In my opinion, my ideal weight is about 190-195 pounds, but that's with some decent muscle mass.  Hopefully, as I start training again next month, my appetite will be stimulated by exercise and I can re-gain some lost muscle mass.

I've now been home for 9 days.  Bit by bit, the pain has been getting better and I'm taking less and less medication.  I can sleep in more positions now, although some positions are still uncomfortable.  I've even had a couple nights where I slept through the night without pain waking me up.

I am dealing with night sweats, which are unpleasant at times.  They are especially unpleasant on hot, humid nights when we are using the air conditioner and I manage to soak through PJs to my sheets.  Between my wife dealing with menopause and me dealing with these night sweats, there are lots of times where one or more of us is awake at night.

I did end up getting an infection in my incision, which had never happened before.  Originally, the staples were supposed to be removed last Thursday, but the incision started to drain some nasty pus and blood, and the skin got very red and swollen.  I've been on antibiotics for a week now, and the staples are finally scheduled to be removed tomorrow.

This has been a problem because surgeons do not like to remove the staples from another surgeon's work.  Initially, I was sending photos of the incision to Sloan Kettering on a daily basis, and they were going to write a letter authorizing the removal of the staples at the two week mark.  But, the infection has made them a bit gun-shy about writing such a letter.  I honestly think that they would prefer that I make a trip to NYC to have them removed, and I won't be surprised if that's a requirement in the future.

Luckily, a local surgical oncologist got my records yesterday and has agreed to do this work.  I'm almost surprised that he agreed to do it, because I chose the surgeon in NYC over him for my surgeries.  I simply wanted the surgeon more experienced with liposarcoma, but I've had some surgeons take things personally when I selected someone else over them.

After the staples are removed tomorrow, I am hoping that our weather finally turns more summer-like (not in the forecast, regretfully), so that I can start walking on a daily basis until the point that I can start lifting weights again.  I hope to be back at CrossFit within the month if all goes well.

And, I'd like to return to fly fishing as long as the water levels are low enough that wading feels safe.  I know I'm not at 100%, so I need to be careful about wading right now.

Tuesday, June 27, 2017

On to Surgery

Wednesday was a very low key day.  I had to do a bowel prep, and I also worked remotely from NYC.  My wife spent the day doing low key things around the city, mostly trying to avoid our cramped room and giving me some room to work.

By 6:00 p.m., the bowel prep was mostly done.  My wife was back and I was starving.  There were a few things that I was allowed that would take the edge off the hunger, so we headed out, looking for some bone broth and some frozen fruit juice popsicles.  This took longer than I expected to find, but we were finally successful.  And, by 8:30, my wife and I were in bed, watching the Warriors vs. the Cavaliers on TV.  I was dozing off, but kept waking up to see the Warriors gradually increasing their lead en route to a 3-0 series lead.

Morning, as it always does on a surgery day, seemed to arrive extra early.  I was allowed 12 oz. of black coffee, and I was very happy about that.  We got some coffee, I took some meds (including pain meds and anti-anxiety meds) and started the walk to the hospital.  We were due at the hospital by 10:00 and we got there maybe 15 minutes early.

Regretfully, my surgeon's first case of the day lasted longer than planned, so we waited for hours.  I tried to relax and just doze, rather than thinking about what was in front of me.  Finally, around 2:00, I was escorted to the OR.  I remember that it was freezing in the OR.  And then, I had some gas and I was asleep.  It's great to get knocked out so quickly, so you aren't awake as you are intubated and have a catheter inserted and have a number of IVs inserted.  I slept through all of that plus the surgery.

The next thing I remember is being somewhat awake, although I couldn't really see anything.  I could talk and hear but my vision seemed to be non-functional for a while.  The nurses in PACU got me some blankets to warm me up, and after a while, they brought my wife into the room.  She told me that surgery had gone well, with one little issue, and that the surgeon was happy with the outcome.

We spent the next couple hours trying to get my pain under control.  For me, Fentanyl just doesn't seem to work very well.  Just like the previous surgery, escalating doses of Fentanyl did not knock down the pain.  I reminded the anesthesiologist that I tend to do better with Dilaudid than Fentanyl, something I'd told him before surgery, so they switched over and we got the pain under control fairly quickly.

I was also informed that the hospital was way overbooked and that I'd be spending the night in PACU rather than in a room.

At some point, the surgeon stopped by.  I don't really remember it, but he gave me a rundown.  All the new tumors were gone with good margins, but he'd had to remove a fair amount of the colon and a lot of what was left of my right psoas major muscle.  I was immediately concerned about needing a colostomy bag, but he said it was nowhere close to that.  I will have to see how this loss of muscle tissue plays out in the gym in the future.  I needed a few months of physical therapy after losing part of the muscle in my previous surgery.  The surgeon also said that he'd been unable to remove the tumor that was irradiated last December.  The tissues were too fused together, and he was afraid of damaging the inferior vena cava or the duodenum, and so he took segments of the tumor, but not all of it.  However, he considered the tumor to be quite dead from the radiation and he said he had no concerns about leaving that tissue behind.

I slept fitfully that night, dealing with pain and constant vitals signs checks from the nurses.  The next morning, I was finally transferred to a room on the 15th floor of the main hospital, where Dr. Singer likes his patients to be housed.

From there, the primary focus was the healing process.  The doctors wanted me out of bed and walking that first day, but I firmly declined, saying that I'd gotten out of surgery late the day before and I simply needed to rest that first day.  Surprisingly, they didn't really argue with me.  The doctors' biggest concern was my heart rate, which was sitting at 120-130 - way too high.

The next day, we did an x-ray and a CT scan (both very painful due to how I had to move) to see if we could isolate the cause of the tachycardia.  Other than some distension in my intestines, nothing showed up.  They briefly considered an NG tube, which I very much did not want, but eventually decided that I should just be up and walking as much as possible.  So, I got up and in three different sessions, I walked 20 laps around the ward.  I could feel air passing from my stomach as I did this, so I was hoping this would help.

Over the next few days, I increased my laps to 65 and then 70 and then 102, and my heart rate gradually decreased.  Overall, I was surprised that I seemed to be recovering faster than my previous surgery.  I was taken off the PCA button (Patient Controlled Analgesia) earlier than normal, although this did happen a bit too soon and I lost control of the pain for 24 hours or so.  They finally upped the dosage of oxycodone and this resolved everything.  I had a bowel movement faster than my previous hospitalization, despite having lost a good chunk of colon.  I was then allowed to start eating simple foods - frozen fruit juice, jello, broth, etc.

The surgery had been on Thursday, and I was expecting to be in the hospital until the following Thursday or Friday.  I was surprised when they used the word "discharge" on Monday.  It turned out that Tuesday was way too early to go home, but they did schedule discharge for Wednesday.  I got out of the hospital late that afternoon and headed to a hotel for the night, planning a train ride home the next day.

I'll write more on some post-discharge "issues" later.

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.