Tuesday, July 25, 2017


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


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.

Friday, June 23, 2017

On the mend

I haven't really thought about doing an update here for a while.  I got a card from a friend yesterday that mentioned my blog, and I suddenly tried to remember when I'd last done an update.  I didn't check until today, but it's been a while.

When I last posted, our trip to NYC was getting close.  We had no problems there, and the first part of the trip, with our kids, was a lot of fun.  The kids weren't crazy about the tiny size of their hotel room, but they weren't paying any of the bills, so they were stuck with it.  The rooms, in their defense, were small, but the rooms were clean and comfortable.  I will definitely use the Pod Hotels in the future for travel to NYC.

We got to the city on a Saturday night and walked to our hotel.  From there, we used Yelp to help find a place for dinner.  We ended up at the Park City Tavern, and our meal was fine.  In some ways, it was the least interesting meal we would eat in the city, and we still managed to spend over $200 for 4 of us.  But, there was nothing wrong with diner; it simply wasn't great, and in NYC, at the prices you pay, I have very high expectations for restaurants.  I'd probably give it 3 stars on Yelp, but  I haven't bothered to review it.

On Sunday, we got up relatively early, got some coffee and breakfast and then walked to the Metropolitan Museum of Art.  It quickly became apparent that we had different interests and different speeds of moving through the museum, so we would split up for a while, meet up, and then split up again.  We managed to stay busy right until the Museum closed at 5:30.  Everyone would have stayed longer if we could have done so.

Outside, it was raining, so we waited under cover for a while.  When it became clear that the rain was with us for a while, I finally got us a cab to Columbus Circle and we walked to Rosa Mexicano by the Met for dinner.  I'd eaten there twice before, and thought the family would love the authentic Mexican foods to be found there.  Certainly, no one complained and plates were emptied, so I think everyone had a nice meal.

As we left the restaurant, the rain had ceased, and our hotel was almost a straight shot on Broadway.  We used this as an excuse to walk off dinner, but also to see all the sights on Broadway that my daughter had never seen before.  We even made it to our hotel room in time to see the Warriors pull away from a close halftime score and take a 2-0 lead in the NBA finals.

On Monday, I worked remotely, while my wife and kids visited lower parts of Manhattan - mostly Little Italy and Chinatown.  They had a fairly relaxing day after being on their feet all day the day before.

That night, we ate dinner at craft restaurant, and it was just amazing.  I was somewhat torn on dinner here this night.  A friend and blog reader had very generously offered to pay for our dinner.  But, my kids, despite being college aged, know their way around a high priced menu pretty well, and my wife and I are veterans of fine dining.  I knew the meal was going to get expensive.  Part of this is the nature of the restaurant we'd chosen, but part of it is simply the love of fine food that we all share.  The meal started with some foie gras (that one was my fault), a salad and some Champagne.  It was the first time I think I've ever seen my son have a drink in a restaurant like this, and he seemed to enjoy the Champagne immensely.  I had purchased just a half bottle of the Champagne, but it was gone quickly.  From there, my wife and I drank wines by the glass.  Bottle prices are simply prohibitive here.

After that, entrees included halibut, steak for two of us, and quail.  All entrees here were a la carte, so we added some wild mushrooms, some grilled spring onions, a potato puree, and a risotto.  I had to laugh a little bit at the risotto.  The owner of the restaurant is one of the judges on the TV show Top Chef, and while the risotto was good, it would have failed badly on the TV show.  Every characteristic that Tom Colicchio uses to fault risotto was present here.  So, while we enjoyed the flavors, we wondered if the owner of the restaurant would have approved of the dish.

By now, you'd think everyone was stuffed, but everyone seemed to find something for dessert.  Some of the choices included semifreddo, donuts, house-made ice creams and a classic souffle.  And, for my wife and me, a nightcap.

We never saw the bill from the evening.  But, from my friend's reaction, I know we ate better, or at least more expensively than he'd anticipated.  This made me feel a bit like a freeloader, although I promised to make it up to him one night after skiing next winter.  Maybe I'll cook for him and his family and open some nice wines from our basement as a a thank you.

After dinner, we walked back to our hotel and everyone said goodnight.

The next morning, my wife and I were up early, as I had medical appointments all day  And, with the medical part of the trip looming, the kids were heading home.  Somebody needed to rescue our poor dog from the kennel and that fell to the kids.

I'll write more about the medical stuff and a very nice dinner for my wife's birthday next time.  The vacation part of the trip is easy to write about.  The medical part is way less fun.

Thursday, June 1, 2017

Hard to figure out my workouts

On Tuesday, I was coming off three rest days where I'd slept a lot.  My two previous CrossFit workouts had gone reasonably well, so I was optimistic.  And then, I really struggled the entire workout.  We started with front squats and then back squats.  I did OK on them, although I kept the weight very light on the higher rep sets.

Then, our metabolic conditioning piece was 10 minutes long, a blend of rope jumping, very light deadlifts and shoulder-to-overheads (this can be strict presses, push presses, push jerks or split jerks - however you want to do it).  I honestly rested for at least 5 of the 10 minutes we were supposed to be moving.  I simply couldn't catch my breath.  I am probably still slightly anemic from the chemo, but this was more than that.  It could be fatigue caused by the cancer itself, an ongoing side effect of the chemo, or maybe something else.  My fitness has definitely decreased since I started chemo in February, so maybe I'm just not fit.

But, the end result was frustrating.  On a day I expected to have a good workout, I had anything but.

When I looked at the scheduled Wednesday workout, I wasn't happy.  Our Wednesdays have been hard recently and I expected that.  I didn't expect to have 80 or more burpees in our 40 minute workout.  We started with 10 bar holds (knees up as well) in the first ten minutes.  Then, 4 minutes alternating burpees and kettlebell swings.  Rest one minute.  Repeat the 4 minutes.

Then, 10 minutes of 2 push presses per minute.  Then, rest a minute.

Then, 4 minutes of burpees and wall balls.  Rest a minute.  Repeat.

I've really been struggling with burpees recently.  It's a whole body movement that requires a lot of oxygen, which I'm struggling with.  Also, my side, where the cancer tumors are located, is not happy when I do them.  They basically create some pain in my abdomen.  And, from the rep schemes, the minimum number of burpees was going to be 80.  My wife ended up doing about 100.

So, I spent most of the day planning to skip the workout.  Eventually, it occurred to me that I didn't have to do burpees.  I could change things and still get a good workout.  I decided on 16" box step-ups instead of burpees.

I went to the gym.  Still nervous after the day before.  I survived the warm-up.  Got my equipment set up.  And, I got started.  And, for some reason, my moderate effort - sort of a slow, methodical approach - worked just fine.  It wasn't easy, but I got through the workout without feeling like I'd been run over by a truck.

I have no idea why Wednesday, a harder workout than Tuesday, went so much better.  I'm just glad that it did.

Today is a rest day.  Tomorrow will be my last CrossFit workout for a while - possibly six weeks or so.

And, on Saturday, I head to NYC to start the process for my surgery next Thursday.  The surgery is only a week away right now and my anxiety levels are climbing.  Open abdominal surgeries are never trivial and this surgery could last up to six hours.  I will be in the hospital, recovering, for at least a week.  There will be a lot of pain involved.

Next Friday, the day after my surgery, at some point in time, a cadre of nurses will descend on my room.  Their goal will be to get me up and walking.  It will hurt like hell, but they won't take no for an answer.  The walking gets better each day.  I understand why they want me to do it.  In just a few days, I'll be walking multiple miles around the floor each day.  But, that first walk is terrible.  Having a Foley catheter is unpleasant.  Well, the catheter isn't a terrible issue.  It's having it removed that I don't like.  Sometimes, it just feels weird.  Other times, it can be truly painful to have it removed.

So the surgery is getting closer.  But first, I have a few days to hang out with my family in NYC and enjoy the city.  We have some nice dinner reservations and plans to visit some museums.  I'm just going to walk a lot, enjoy the time with my family, and not think about the surgery, if that's possible.

Tuesday, May 30, 2017

Still a bit tired

I made it to the gym on Monday, Wednesday and Friday last week.  The latter two workouts were the best I've had in awhile, but they left me exhausted for the weekend.

On Saturday, my wife and daughter and I had a bar mitzvah to attend in Saratoga Springs.  It was a great chance to see some friends that we don't get to see often enough.  In between the ceremony and the celebration that evening, our friends invited us to hang out at their house for the afternoon.  But, the tiredness won out and I napped all afternoon while my wife and daughter went shopping.

That evening, we left the party before it officially ended.  In the past, with these friends, I would have always been the last to leave, but my body just isn't there right now.  I do think that my wife is enjoying my abstinence from alcohol.  She is our designated driver more often than I am, but these days, I do most of the driving, allowing her to relax and have more fun at times.

On Sunday morning, we slept in and then checked out of our hotel.  We went to a nearby Mexican restaurant that my daughter loves, and I simply couldn't eat.  I sat there while my wife and daughter ate.  This is happening to me more and more often these days, and it's similar to when the cancer first made its presence noticeable in my life.  If I have some medical MJ, I'm hungry and I eat just fine.  Otherwise, I have zero appetite, and often, the only thing that tastes good is sweet foods.  I've now lost about 15 pounds since my chemo started, and the weight loss has been accelerating.  If I wasn't ten days away from surgery, I would be very concerned about this, but with the surgery coming up next week, I think I can put up with it for a little bit longer.

I dozed on the drive home and then took a real nap when we got home.  I woke up at 6:00 p.m., realizing that I had to mow the lawn.  It was supposed to rain all of Monday, and I had no other time to mow before we leave for NYC.  The lawn was a bit wet, but I managed to get it mowed.  It will be a couple weeks until it is mowed again, and my poor wife will be mowing that time.  It might be a couple months before I'm on the lawn tractor again.

After mowing, I managed to eat some dinner and we watched episodes 3 and 4 of Twin Peaks.  To be honest, I think the medical MJ enhanced both of those experiences.

On Monday, I slept in late again.  Napped in the afternoon.  I basically did nothing, to be honest.  I got 14 hours of sleep between the night of sleeping and the nap, so I'm guessing my body is still not recovered from the chemo.  Or perhaps these are effects from the cancer itself.  Either way, I was tired and I didn't fight back.  I just went with it.

I was almost happy when I had a hard time sleeping on Monday night.  I was hoping it meant that I'd slept all that my body needed.  This morning, I didn't sleep in the car on the way to work either - another thing I've been doing recently.  So, maybe my 37 hours of sleep over the weekend (according to my FitBit) were enough.

I'll find out at the gym tonight, I suppose.  My goal for this week is to do CrossFit on Tuesday, Wednesday, and Friday.  That last day will be my last CrossFit workout for six weeks or so, so this is my last chance to get any real training for a while.  For the first month or so after surgery, I will be limited to walking and maybe the stationary bike.

My previous post was about gratitude.  Since I made that post, my wife and I have received two more wonderful gifts.  One was an offer of a dinner in NYC from a skiing friend who reads my blog.  He even suggested a restaurant that I've wanted to visit in NYC for a long time - Craft Restaurant.  Well, he suggested two places, and I think that I picked the more expensive of the two.  I'll be sure to stay away from the ribeye for 2 at Craft - a $150 entree.  If I felt 100% healthy and I was paying for this myself, that would probably be something I'd like to try.  But, on someone else's dime, there are plenty of other great options there.

Also, my wife's co-workers gave her a gift to pay for dinner on her birthday, which is two nights before my surgery and the night after our kids head back home.  So, we are going to try one of the top bistros in the city - db Bistro Moderne.  In 2000, two nights before the NYC marathon, we had dinner at Daniel, one of the top restaurants in the city.  It was an absolutely amazing meal, despite the fact that I had a cold and couldn't taste everything properly.  The bistro is owned by the same chef - Daniel Boulud, and we are looking forward to our dinner there.

For both of those meals, I may need a little bit of my medication to make sure my stomach is in the mood to eat.  After the dinner on my wife's birthday, I won't be eating again for over a week, so I'd better make that last meal for a while a good meal.

So, we are headed to NYC on Saturday.  I am, of course, nervous about the surgery portion of the trip.  There are so many reasons that surgery is unpleasant.  Catheters, the early extreme pain, experience of "coming to" from general anesthesia and feeling that post-op pain for the first time, the compromised breathing, and the nurses who force you to get up and walk while you still hurt like hell.  I've been through it enough times to know what to expect, and I'm not looking forward to it.

But, thanks to some charities and some friends, we are going to have a really fun few days in NYC before the surgery, and I am very much looking forward to that part of the trip.  The rest is simply something that I have to do, and I will get through it the best that I can.

I remain filled with gratitude that we have the support and friendships that we have.  I know other people afflicted with this same disease, who have gotten no support from spouses, parents, or siblings.  I've gotten nothing but love from the people I know, and every bit of it is appreciated more than people can realize.

Tuesday, May 23, 2017


This post is really an extension of something I wrote on Facebook yesterday.  Here is the post that I made there:

"Never in a million years would I wish a rare cancer on anyone. But, I have to say that I've seen some of the most generous and kind acts from friends and acquaintances over the past couple years. It's easy these days, especially from a political point of view, to lose faith in each other and in the innate kindness of people. All I can say is that I've seen so much kindness in the past couple of years that I could never repay it all. I'm trying to pay it forward when I can, but this illness has really restored my faith in how we treat each other as fellow humans. Even little gestures can mean a lot; little things that may mean nothing at all to the person who does them can mean the world to me at times. The bigger kindnesses leave me awestruck at times."

So, my daughter had requested to come along to NYC for my next surgery.  I'd like to think that she wants to be there to support me, but in reality, I'm pretty sure she would just love to make her first ever trip to the Big Apple.  And, I'm OK with that.  My kids are 19 (my daughter) and (almost) 24 and they have their own lives, their own goals, their own dreams.  Their lives should not be consumed, as mine has been, by liposarcoma.  I think the same of my wife, but as the spouse, she is stuck with it all.  And, I say that light-heartedly, knowing that she is glad to be by my side most of the time.  On occasion, when the anger escapes from my mouth, her thoughts might be different.

Anyway, my wife mentioned to a co-worker that she'd like to take the kids along on a trip to Sloan Kettering as additional support for me.  That co-worker must have mentioned it to the bosses, because her company and her company's parent company, offered us some money to take the kids along.  The thing is, while they meant well, the amount of money they offered was way less than it costs to take the kids.  But, they meant well and I would never be anything but grateful when someone offers to help.

For everyone to go to the big city, we need to board the dog.  We need four RT train tickets.  Two hotel rooms per night rather than one.  And, at this time of the year, NYC is simply crazy expensive.  All of my overnight trips to NYC for this cancer have come in the November-March time frame, when travel is less expensive.  This is prime season and hotel rates are very high.

People at our gym held a fundraiser for my wife and me late last winter.  The purpose was to help with our travel expenses to Sloan Kettering.  We used about 60% of that money for a series of trips in November, December and January, but we still have $2K left.  So, I told my wife that we'd find a way to make it work and take everyone along.

To be honest, even though I agreed to this, I had (and still have) my concerns.  My company is not doing well financially, and I could lose my job this summer.  This is not exactly an ideal time for me to be looking for a job.  So, we are at risk there.  Our medical debt from the past 4 years or so is staggering.  So, money has been tight.  I bought a new fly rod recently, but unlike in the past, where I could simply do something like that, this time, I sold another of my fly rods to pay for the new one.  We are sort of living like the federal government talks about at times.  Every new expense needs to be offset by some savings somewhere else.

Yet, and this continues to amaze me, things all just kind of fell into place.  I can't explain it, I'm not sure I even want to know, but a grim situation has simply turned around, and it's all working out.

I mentioned to my therapist recently that we wanted to do this and how I didn't want to disappoint my wife and children.  She asked me if I knew about a fund at the University of Vermont Medical Center to help cancer patient with financial issues.  I knew nothing about it, so she gave them my name.  The next day, I had a phone call to talk about things.  And then, they agreed to pay for our train tickets.  All four of them.  No paperwork or anything.  Just a little bit of history, our plans for the trip, and the money gets allocated.

I was really struggling with hotel rooms.  My normal destination, the hostel at the Upper West Side YMCA, was booked solid.  It wasn't a matter of paying full price of $120 for their dorm-like rooms instead of the normal $60 rate I get.  They had no rooms at all.  Most of the hotels that Sloan Kettering works with were full or nearly full.  The best I could find for the rooms we needed (9 total rooms over 6 nights) was close to $3K.  When I had been expecting to pay one quarter of that, this was very disheartening.

I did find that a sister property of one of those listed by Sloan Kettering has cheaper rates.  Not cheap, but cheap enough by NYC standards.  Our rooms for the week would be $2107.  Not nearly as cheap as the YMCA, but not $3K either.  Or, one of the hotels had offered to put all of us into a single suite.  For $4K per night.  We passed on that one.  So, for a price that exceeds my mortgage, I was able to find some rooms for us.  They were crazy expensive to a country boy who lives in VT, but I've been assured that I got a great deal for Manhattan at this time of year.

I mentioned this cost to the social worker I was working with at Sloan Kettering.  She mentioned a patient assistance fund that they have, and told me how to apply.  Only my personal expenses can be reimbursed, but any help would be welcome.  I told her that I thought it wouldn't work.  Our income is high enough that I thought it would be too much.  But, when she asked for our household income number, she insisted we apply.  Our income might exceed the average here in VT, but it's a pittance compared to what it costs to live in NYC.

My wife filled out an extensive form last Thursday.  I remained sure, given our total income per year, that we would be ineligible.  But, they really look at your whole financial picture, including debt, and especially medical debt.

I gave them the completed form on Friday morning.  Monday morning I was informed that I'd been approved for the program.  We talked about what expenses were specific to me - my room, my food, etc.   I had been honest that train tickets were already covered and I didn't try to double-dip on that.  By yesterday afternoon, Sloan Kettering had agreed to give us another $827.

So, we suddenly have well over $2K in new funds - from hospitals and employers.  I had no idea that funds like this existed.  Add in the remaining money from our fundraiser, and we can easily afford to take everyone to the city for a few days.  My wife's birthday is during this trip, and I'm hoping we can get out for a nice dinner on her birthday.  Two days before surgery, this would be a great way to celebrate.

We are going to send the kids home right before my surgery.  My wife has enough to worry about during the surgery itself and the immediate post-surgical recovery.  We decided it would be an additional stress to have to worry about the kids during that time.  But, they get three nights in the city before my surgery.  We have some plans to visit museums, walk a lot, and eat at a few of the nicer (but affordable) restaurants that I've found on my prior trips to the city.  I am going to work remotely for part of the trip, and I think my family has plans to visit the Village, SoHo, Little Italy and Chinatown.  In one day.  I wish I could go along on that day, to be honest.

We are even going to try to get same day tickets to see the Late Show with Stephen Colbert.  My son and I saw a live broadcast of his old show, and people think it would be fun to see him again.

I'm not a religious person.  I'm not a praying person.  I'm not a believer in karma or other unseen reasons that things happen.

Yet, right this moment, I'm amazed at how this has all happened.  An idea was hatched, it was honestly too expensive, and then it all somehow worked out.

Hopefully, good news like this will extend right through my surgery and recovery.

And in the interim, I am full of love and gratitude to the point of giddiness.

The universe can be a cruel place.  I have too many friends with cancer at the moment to not see that cruelty.  And at the same time, there is so much goodness out there that leaves me awestruck.  I'm reminded of some lines early in the movie American Beauty:

Lester Burnham: [narrating] I had always heard your entire life flashes in front of your eyes the second before you die. First of all, that one second isn't a second at all, it stretches on forever, like an ocean of time... For me, it was lying on my back at Boy Scout camp, watching falling stars... And yellow leaves, from the maple trees, that lined our street... Or my grandmother's hands, and the way her skin seemed like paper... And the first time I saw my cousin Tony's brand new Firebird... And Janie... And Janie... And... Carolyn. I guess I could be pretty pissed off about what happened to me... but it's hard to stay mad, when there's so much beauty in the world. Sometimes I feel like I'm seeing it all at once, and it's too much, my heart fills up like a balloon that's about to burst... And then I remember to relax, and stop trying to hold on to it, and then it flows through me like rain and I can't feel anything but gratitude for every single moment of my stupid little life... You have no idea what I'm talking about, I'm sure. But don't worry... you will someday.

While I don't buy into the mysticism that Lester refers to here, I do see beauty in the world.  I don't understand why things work the way they do.  I don't know why I get to be the kid who gets the weird cancer.  But, just like the Facebook post that opened this blog post, or the quote above, I'm amazed by the beauty I see in the world.  Cancer may kill me eventually, and I would never say that getting cancer has been a good thing.

But, I have learned so much from having this disease.  I've learned to see the world in a completely different way.  And, gratitude.  I'm so full of gratitude for the life I've already lived, and for the little things that keep falling into place.  

I'm an unlucky man.  At the same time, I'm a very lucky man..

Monday, May 15, 2017

Sleep Comes Down

If anyone can possibly guess where the title of this post comes from, I'm not sure what the prize should be.  I'd suggest that I could offer my 12" vinyl version of the Psychedelic Furs' song Sleep Comes Down, but I don't want to part with it, to be honest.  And now, I've answered the question.


That's all I do any more.

I slept almost 80 hours last week - almost half of the week.  I had one day where I only slept 8 hours.  Over this past weekend, I slept 29 hours in a 39 hour period.  I did sneak out fly fishing for about 4 hours on Saturday.  It was fairly easy fishing, yet it took so much out of me and I took a 4.5 hour nap to recover from the fishing.

Today is 2 weeks since my last chemo session.  The last time I went 3 weeks without chemo, I couldn't stay awake that third week.  I'm hoping that's not the case this time.  I'm hoping this is the week that I turn the corner and start to see some improvements in my mental and physical capacity.

With the chemo over, and surgery in 24 days, I really want to be in the gym, training as much as makes sense.  I think this will help with my surgical recovery as it has in the past.  So, no matter how tired I feel these coming weeks, I'm going to try hard to get to the gym or get out walking with the dog.  Right this minute, I've done one half-assed CrossFit workout in the last 9 days and nothing else.

Fishing isn't exercise.  Mowing the lawn (from a tractor) is not exercise.  Cooking dinner isn't exercise.  And, napping for 1-6 hours at a time is most certainly not exercise.  I am honestly amazed that anyone can tolerate this chemo and still live anything resembling a normal life.

Regretfully, an acquaintance in CA is just starting this chemo for the same reason that I did it, and I think I've scared her with my stories about fatigue.  I certainly hope things go better for her.  She is doing this in a more traditional method - every 3 weeks rather than 2, and a Neulasta shot between every round.  I hope that gives her the energy to thrive through the next few months.

Otherwise, there is nothing new.

I still can't seem to catch a fish to save my life.

I'm working on my travel plans for my surgery.  Working.  And, napping whenever I get the chance.  I never imagined I would be a person capable of sleeping this much, much less wanting to be asleep this much.

But, this is a different chapter of life and things are just different right now, I suppose.

For now, I will just go with the flow.  I know the fatigue will start to fade soon.  My anemia will resolve.  My other blood test results will start to trend towards normal.

And then, just as I start to feel decent, they are going to cut me open.  But, right now, I have 24 days to get ready for that event, and I plan to do that the best I can.

Thursday, May 11, 2017

Things falling into place - a few rambling thoughts

I got a call from my surgeon Monday night at home.  Yes, that's correct.  A top surgeon, a department chair, a world class specialist from one of the top cancer centers in the world spent Monday doing surgery, and then took the time to call me at home to follow up on my care.

He had finally had a chance to read my latest CT scan.  In his opinion, there is no need to do two more rounds of chemo.  He wants me to heal up - let my immune system recover - and then move to surgery.

We talked for maybe 10 minutes, and at the end of that time, we had selected a surgery date.

I will get to NYC on 6/5, have some pre-op testing done on 6/6 (not a very exciting birthday for my poor wife), and then do surgery on 6/8.  I will probably stay in NYC until the 18th or so.

So, I'm going to have to skip a couple concerts.  I'll get over that.  I have to skip a short fly fishing trip.  I'll get over that as well.  I will miss about a month of trout season.  Oh well.  There are simply priorities in life, and living through cancer is one of them.

My wife's company is talking about sending our entire family to the big city a couple days early.  I'm not sure who would pay what, but all four of us would go, stay in a hotel, enjoy the weekend before the surgery, celebrate my wife's birthday, and then the kids would come home when it got time to deal with the real medical issues.

Over and over through this ordeal, I've been overwhelmed by the generosity of the people in our life.  My wife is really an amazing lady.  Upbeat.  Positive.  Always willing to help others.  And, it gets paid back to her in spades at times.

Currently, my primary care provider is on maternity leave.  I needed to see a primary care provider this week for a minor medical issue related to the cancer.  Not a big deal, but it did involve pain medicine, and unless people are living under a rock, they know that pain meds are a big issue these days, even for cancer patients.

So, I met a new provider today.  She did a full "systems" check.  How is my wife?  How are the kids holding up?  Do I have the support I need?  Is there anything else I need that I'm not getting?  Those kinds of things.  She made me pee in a jar to prove that I'm taking my pain meds and not selling them.  Given that I have scripts for pain meds, medical MJ, and a benzodiazepine, I will easily "fail" this test.  Which, in this case, means I pass.

One of the topics that came up today was the concept of patient vs. caregiver.  With 3 distinct cancer diagnoses between us in the past 3.5 years, we've each gotten to play patient and play caregiver.  Being the patient sucks.  I won't lie about that.  But, to be honest, being the loved one of a person with cancer is even tougher, IMO.  It's really a tough place to be.  You need to take care of yourself.  Get to the gym.  Eat well.  Sleep enough.  Etc.  But, at the same time, your real priorities are with the person who is sick.  And, you can't control it.  You can't change it.  You can't fix it for the patient.

You can be there.  You can support them.  You can love them.  But, you can only do so much, and after that, you feel powerless.  There are forces in charge that you can't control, you have a problem you never wanted, and in a worst case scenario, you are looking at losing your lifelong partner. I don't know how my wife does what she does.  Yet, she never complains. She puts my needs first.  She is a mom to our kids.  A wife.  Maid.  Etc.  It's a role she does pretty well.

I'm pretty much a mess as the patient.  I'm not sure how I'd do as the caregiver in this particular scenario.  I'm just glad that I married so well.

So, we might get a brief weekend as a family in the big city courtesy of my wife's co-workers and the owners of her company.

My biggest goal right now is to live long enough to pay back all the kindness that we've received in the past few years.

And, maybe find some time to catch a few more trout along the way.

Friday, May 5, 2017

Communication Breakdown

Trying to coordinate care between two hospitals has been very challenging for the past 18 months.  Most of the early coordination was done by a local medical oncologist, who had extensive sarcoma expertise.  That doctor has since moved to a different teaching hospital.

But, she promised me that she was leaving me in good hands with a new provider who would be up to speed quickly on my case, and on liposarcoma.  Oddly enough, I still haven't seen him.

Instead, I was shunted off to a different medical oncologist.  She is the person who detected the misread in my CT scans recently, but she's not a sarcoma expert.  She is part time.  And, she's retiring.

I had a treatment this morning - hydration, anti-nausea meds, and TPA to "unblock" my chemo port, which had developed a blood clot.  I was able to talk to my triage nurse, but she told me the doctor was essentially unavailable today and all of next week.

So, I have no idea how things are going with Sloan Kettering.

The current doc helped to create a problem with my pain medications, and I need to get that resolved with a PA who is a back-up to my PCP next week.  I'm not confident that that visit will go well.  "Hi, you don't know me at all, but I had an opiate contract with one of your co-workers.  My pain med needs increased, another doctor helped me to violate my old contract, and now I need a new contract with more pain medicine every month.".  That has "pill seeker" written all over it, but hopefully my diagnosis will outweigh that concern.

So now, I will probably be pushed to the doc I was supposed to be pushed to a couple months ago.  I'm fine with that, but it means starting all over again in some respects.

This means re-establishing communication between that doc and Sloan Kettering.

No one knows if I need my 7th round of chemo a week from Monday.  I might not find out until that day.

I have no idea when I'll meet the new doc.

I'm at a crucial time in my care, with some big decisions coming up.  And, communications are failing badly.

The only way to fix this is to do it myself, I'm afraid.  I need to contact Sloan Kettering.  I need to stay on top of every doctor, every nurse, every caregiver.

For now, at least, I'm not involved in ongoing fights with my insurer.  I'm good on insurance coverage, for this year at least.

But, after yesterday, I'm envisioning a future where I have to fight everyone for the care I need.

And, if you happen to be one of those people who like what the House did yesterday, do me a favor.  Leave me a comment.  Explain why my condition, which has zero known lifestyle causes, should just cause me to be abandoned by the healthcare system.  Explain to me why I'm just unlucky and I get to die.  I must be a bad person, according to a congressman from Alabama (a state where as many as 30% of the citizens have pre-existing conditions).  I'm lucky in that I probably won't have to move from the liberal state where I live.  I pay high taxes here and I'm sure VT will continue to incent their insurers to provide decent coverage for my condition, but also at an exorbitant cost.  My current ACA policy costs me $22K per year, but it's saving my life right now.  But, it only takes one small change and it would be fatal for me.  If I lost the ability to seek treatment at a sarcoma specialty center in NY or MA, there are no sarcoma specialists in my local area.  Being limited to local docs, being denied coverage for a pre-existing condition, or having my rates doubled, tripled, or worse (I've seen estimates that some patients with metastatic cancers can expect to pay $140K annually in premiums and out of pocket expenses with the high risk pool scenario) would be a truly fatal blow to me.  For the record, my cancer is not yet metastatic.  I've had only local recurrences, but I've had multiple recurrences, and eventually, metastasis to my lungs is very likely.

I've spent my adult as a taxpayer paying my fair share.  I don't complain.  I would rather have one person cheat the system, or even have 20 cheat the system, rather than deny a needed benefit to one person who really needs it.  I think most of the civilized world thinks that way.  I pay my taxes with that kind of attitude.

If you disagree, I'd love to hear about it.

Tuesday, May 2, 2017

And, we move on

From Wednesday night through Sunday around lunchtime, I slept 52 hours, according to my FitBit.  Two nights registered at 15 hours.  I even napped during the days.  I was too tired to even work on Friday morning.  The cumulative effect from this chemo is pretty intense.

But, after some intense rest, some time to calm down, and just feeling a bit better, I'm back on the treatment train.  I mentioned to my nurse at chemo yesterday that I was at a point last week where I'd just had enough.  I just felt I couldn't continue with any of this.  She thought about things for a while, and asked if I knew about the counseling services offered by the oncology center.  I am a patient there as well, so I was well aware, but thanked the nurse profusely.  She had thought about an offhand comment that I'd made and tried to create something good out of the situation.  I am grateful for the caring health care personnel that I encounter on a regular basis.

I have also recently run afoul of the "pain medicine police", it appears.  My primary care provider works for a small, local hospital.  Throughout this ordeal, she has mostly done triage type work for me, helping me to see the appropriate providers, managing medications, and worrying about some day to day issues so I can focus on the cancer issues.  This has included pain medication management.

I'm sure there isn't a person in the US who hasn't heard about opiate addiction.  In the cancer world, things tend to be a little bit different.  Control is perhaps a bit less lax than for the general public, especially the backache and toothache pill seekers.  Cancer patients seem to get asked fewer questions when they are in pain and tend to have access to the pain meds they need.  I don't take a lot of pain medication, but I've now had 3 cancer surgeries, a course of radiation, two courses of chemo, and I have some active tumors in my abdomen.  Pain is part of my life.  Medical marijuana helps with the pain, but it's something I can only use at night.  During the day, and after hard workouts, I need some access to pain medications.

So, for a year, my primary care provider has been providing those prescriptions.  But, my PCP is currently on maternity leave.  And recently, I had a change in my pain status that resulted in some more pain.  I mentioned this to my oncologist, and she immediately gave me another prescription.  I mentioned to her that this would violate my opiate contract (yes, I have an opiate contract with my primary provider) because I'm not allowed to get pain medicine from anyone but my primary care provider under the existing contract.  The oncologist asked if there was another way to do it.  I explained that with my PCP on maternity leave, I would have to make an appointment with a provider I didn't know and ask for an increased dose of pain medication, which could easily be denied.  My oncologist answered like this: "I don't require opiate contracts.  I don't count pills.  I want my patients to be safe but I also need them to be comfortable to focus their strength on their treatments."  She offered to take on all of my pain medication management, if I wanted.

But, I decided I'd wait.  I sent an e-mail to my PCP explaining the situation.  And, last Friday, I called the prescription line for my PCP and asked for a refill.  I was open about the other medication that I'd gotten in that request as well.

Apparently, my message triggered a query to the state and they found my other prescription.  No big surprise, given that I'd told them about it.  But, they then called me and told me they couldn't fill my prescription because I'd violated my opiate contract.  The nurse agreed that I'd done everything appropriately, but policies are policies.  I am allowed to visit another provider, sign a new contract and get more medication, if the provider is open to my request.  I told them that I would think about it, but my plan is to simply move pain management to the oncologist.  I think I'm pretty responsible about how I use the medications and I don't like being treated almost like a criminal for having cancer and pain that goes with it.

So, despite a low point last week, things are a bit better right now.  I'm done with my 6th round of chemo.  If I'm lucky, it will be my last, or we could do 1-2 more.  If the final response at the end of chemo is good enough, we will move to surgery.  If not good enough, we may try another medication first, although I'm certainly hoping that won't happen.

And, I'm not ready to give up trying against this beast.  At times, I feel pretty beaten up by the treatments.  And the disease.  I may not win this war, but I also won't be defeated.  I'm going to live life on my own terms for as long as I can.  Besides, there are still lots of CrossFit workouts to be done, and trout to be caught.

Thursday, April 27, 2017

Meltdown Day

I suppose that it's inevitable that there are going to be tough days while on the path that I'm on right now.  I do my best to hide them.  I am trying hard to be a good employee, to train hard through everything, to keep myself in good shape, to take care of things at home, etc.  And sometimes, it all becomes too much.

Yesterday was that day.  Well, one of them.

I don't even know how to describe the day.  First of all, let's start with how I deal with this stuff mentally on a regular basis.

I have medication for pain.  I have medication for anxiety.  I have medication to help with fear and anger related to this stuff (not an anti-depressant; I don't like the side effects of SSRI/SNRI meds).  I have a medication to help me sleep.  I have medication to help me concentrate at work.  And, I have medical marijuana as well.  If I chose to do so, I could live in some sort of altered state all the time right now.  That's not my goal, and I try to use the meds judiciously, to get through each day and my responsibilities, as well as I can.

At the end of the day, I will admit that I often take pain medication and medical MJ as I leave the gym.  The combo of those medicines gets rid of the pain from my surgeries and scar tissue, it relaxes me, it helps me with my non-existent appetite, and it simply lets me forget about some of the worst of this for a while.

I can't say that I'm proud to be relying on crutches like this.  Yet, at the same time, the realities are so overwhelming at times that I can't imagine having no medication at all.

I also see a therapist every other week, a wonderfully compassionate woman who only works with cancer patients.  We talk about anything and everything, but mostly about how I want to interact with other people as I walk this path.  While I would never call myself a Buddhist, there is a lot of Buddhist thought in how I approach all of this, and the therapist and I have some good common ground there.

One of the most interesting things to me in all of this is how infrequently I end up in tears.  It feels like I want to cry all the time, but my body seems to be allergic or something.  Perhaps one of the meds is responsible.  Perhaps it's just some societal "tough guy" thing, where I subconsciously feel I'll look weak if I cry.  I don't know, but I do intend to ask a doctor who I'm seeing next week.  There are honestly times that I think I'd feel better if some more tears were spilled.

So, what happened yesterday?  My legs were sore.  I had bailed on our workout the night before because I was tired.  So, I took some pain medication early in the day.  A small dose that rarely phases me mentally.  Then, I took some medication to help with my concentration and some to help with anxiety.  This is how I tend to work during the day.

I was working on something really, really complex.  And, somewhere, I screwed up and overwrote some code.  I had multiple methods to recover the lost code, but losing it was kind of dumb.  At least I have backup procedures in place.

I finally got my code restored, but realized that I'd spent half a day correcting an error, rather than moving forward.  My stomach was in knots all day long - too much anxiety from making a mistake that I should never have made.

We went to the gym.  It was a hard workout and I'm really, really struggling in the gym right now.  We started with 400 meter runs, and I had to do 200 meter jogs instead.  I just felt like I had nothing and I hated every damned second of the workout.  Everyone at our gym is great about what's going on and very supportive.  Yet, I almost always feel as if they are looking at me as "cancer man", wondering how long I can keep up with this charade.

By the time the workout was over, I'd crossed some sort of line.  I had decided that I didn't want any more treatments.  No more training.  No more surgery.  No more chemo.  No more work.  I was talking about just quitting my job and applying for SSDI, which would financially devastate my family. I'm just tired of this and I want it to be over.  Completely over, and I said that out loud, something I rarely do.  I'm sure I was a bundle of joy to be around for a while.

And then, I took some pain medicine.  I took some medical MJ.  I caught up on e-mail with friends while my wife drove home.  And, I calmed down slowly.

Don't get me wrong.  I am tired of crappy workouts that don't seem to be helping much.  I'm tired of being tired all the time.  I'm tired of doctors.  I've had enough.  But, at the same time, I'm not quite done yet.


I'm not a Catholic, but this feels like my understanding of Purgatory.  I'm not in heaven.  I'm not in hell, although it feels that way at times.  I'm stuck.  I have responsibilities.  A job.  Co-workers who depend on me to be functional.  A family that needs me to bring home a paycheck.  A company that might fail if I had to take a leave of absence.

If I'm completely honest, I would go on SSDI if I could afford it.  This is all simply too hard at the moment.  But, I can't afford it.  It's the path my life has taken and I have to navigate it.

I don't have to like it.  I am allowed to scream "NO" at the loudest volume I have.  I'm allowed to be pissed off, scared, in pain, distressed, etc.  I'm not special or unique here.  People get fatal diseases all the time.  Life itself is a fatal disease.  I had just hoped for a more traditional trajectory in my life, one that involved seeing my kids graduate from college, get married, have children, etc.  Growing old with my wife.  Having that part of my life most likely stolen from me hurts the most.  It hurts for me and I hurt for my wife as well.

Yet, every time I try to think of an alternative ending, I know the odds are very slim for that to happen.  So, I muddle through, I do my best, and sometimes, a day just goes to shit.

Today, I'm working from home and I got to sleep in.  Tonight, I'll take my dog for a walk.  He's an oblivious lunk, unaware of any of what's going on around him.  He loves me unconditionally, something that I think I need to learn how to do myself.

Monday, April 24, 2017

How boring can a weekend get?

I slept 13 hours on Friday night.  Took Saturday as a rest day.  Cooked a bit.

I tried to stay up late on Saturday to watch the Sharks and Warriors in their playoff games.  But, when the Sharks went down 2-0 early in the second period and the Warriors were trailing badly, I couldn't take it anymore and went to bed.  Being primarily a Sharks' fan, I was glad I didn't watch any more.  A season that was so promising at the end of February will forever be remembered as a complete failure.

Sunday morning, my wife and I went to Stowe to ski with a friend.  Thanks to a major disconnect, we waited for 2+ hours, never found our friend, and never skied.

So, I went home and took the dog for a walk instead.  Then, headed out fly fishing and nearly drowned.  OK, I didn't really almost drown, but my expensive waders, which were just fine a few weeks ago, now seem to be full of holes, and I got cold and wet very quickly.  I think I quit fishing after 15 minutes.  Right this minute, I feel like just giving up on fishing, but I'm sure that will all change as soon as I actually hook a fish this year.  As much as I love fishing, I will never be one of those guys willing to work 12 hours in a day for a single fish or even a single strike.  I appreciate the work ethic of people who can do that, but it's just not who I am.  If I go hours without catching a fish, or at least believing I'm going to catch a fish, it gets old very quickly.  Yesterday was very much like that - cold, wet, high water, no signs of life.  Just no fun at all.

After fishing, I went home and just laid down for a while.  I'm just feeling beat up by life right now.  It just seems that nothing has gone well recently.

I ordered some new waders from Patagonia this morning.  They have a lifetime warranty.  I told my wife that the phrase lifetime warranty meant a lot more to me before I ever heard the word liposarcoma.

The one thing that makes me happy right now is that I have zero medical appointments this week.  It seems it's been months since that happened.

I do need to get in touch with Sloan Kettering this week.  I need to know if we are going to end chemo after next Monday, and if so, do I need an appointment in NYC as a pre-surgical follow-up.  Or, are we going to go for the full 8 rounds, which means chemo until the end of May?  Either way, I need a break right about now.

Sometimes, I can stay positive in the middle of this giant shitstorm.  This past week just hasn't been that way.  I'm easily at the lowest point I've been since I first heard the word liposarcoma, and I need something to change.

Somehow, I need to find a way to train in the gym this week, and if the past weeks off of chemo are any indication, it's going to be a tough week.

Friday, April 21, 2017

Quick Hit

Monday - Chemo and CrossFit
Tuesday - CrossFit
Wednesday - Tough CrossFit
Thursday - Worked from home and walked the dog
Friday - I'm in Love (with some CrossFit later)

Today (Friday) is the 58th birthday of the lead singer of the Cure, Robert Smith.

Tuesday, April 18, 2017

Listening to what I said I was going to do

Last week, I wrote about adjustments I've needed to make to my training as I get further into my chemo.  And, after listening to myself for a few days, things are working out so far.  Last week, I did CF on Monday, Wednesday and Friday.  On Friday, I scaled the workout a lot because I was tired, but I got through it.

Saturday, I had a busy morning, but I hoped to fish or walk the dog later in the day.  To be honest, I slept in to start the day.  Then, went to the farmer's market, got some other groceries, got some dog food, and came home to put everything away.  Then, I took a nap.

I woke up from my nap about 4;30 and decided that walking the dog was more important than fishing.  The rivers were high and cold anyway.  So, I put the leash on the dog and headed out, only to discover that it had just started raining.  Rhodesian Ridgebacks hate rain.  Well, most of them do, mine included.  So, Saturday became a rest day.

On Sunday, I had family coming over for dinner, and I did sleep in again, but I had time for my wife and I to get out with the dog for a while.  Not a super long walk - just short of an hour - but it was good for everyone involved.

Then, I spent the rest of the day cooking.  I guess I will always wonder how the magnum of 2013 Bourgogne Rouge from Montanet-Thoden I opened for dinner tasted.  With chemo scheduled for Monday, I didn't have any of the wines that we opened, although I was very curious about the red wine and it was my only bottle.

On Monday, chemo went just fine.  I got some time with my medical oncologist and we talked a little bit about her conversation with Sloan Kettering, and we talked a bit about pain control.  She wrote me a new prescription for pain medication and offered to take over all of my pain meds from my primary care provider if I would prefer to do things that way.

I think that my pain medicine is a pain (pun intended) for my primary control provider.  She is a mid-level provider, so her prescriptions for opiates are certainly scrutinized by her supervising provider.  And, I'm an unusual patient for her - way more complex than the average patient seen by a PA.  I consider her to be more qualified than a typical PA, mostly because she also has a Ph.D. in the nursing field, and I like her alot, but it might be easier for her if I move my pain management to my oncologist.  So, I'll think about that.

A few hours after chemo, I was in the gym and feeling pretty good.  I had my best workout in the past couple weeks too.  My squats were the same as the last few Mondays, but they felt pretty easy compared to the past couple weeks.  My wife was training behind me and commented that my squat depth was very good (for me).  Part of this was that I was lifting enough weight to push myself down deep, but not so much that I was afraid I'd get stuck in the bottom, so I was able to work through the whole range of motion pretty well.

The main workout was rope jumping, air squats and power cleans.  I modified the number of reps on each, and got through the workout better than expected, in about 7:25.  I'm glad I scaled a bit, but I probably could have done a bit more.

Today is my last day for this cycle taking 8 mg of dexamethasone per day, so I'm guessing I'll feel good enough to do CF again tonight.  My primary goal right now is to get 4 CF workouts in the next 9 work days.  If I can do that, I'll end up with 10 CF workouts in the 20 business days in April.  All things considered, I'd consider that to be a pretty decent month.  Not quite as good as the previous three months, but all things considered, I will be happy if I pull it off.

Friday, April 14, 2017

Tired of being tired

I don't know which is worse these days.  Being tired all the time, or having to listen to me complain about being tired all the time.

My wife has been an absolute saint recently.  Every time she asks me how I'm doing, the answer is the same: "Tired".  Yet, she never complains about this answer, she encourages me to rest when I can, and supports me whether I choose to train or rest or just simply sleep.

I was hoping that this week off of chemo would have me feeling better and training more.  Instead, I think things have been even worse than the past few weeks.  And, I think my wife has figured out why.

It's been odd to me that my training is going better during chemo weeks than during the week after chemo.  It just seems to me that I should recover somewhat from the chemo, and the second week should be better.

But, I think the answer lies in one of my medications - dexamethasone.  It's a steroid that I take the entire week that I get chemo.  Dex starts on Sunday.  Chemo is Monday.  After three days, I taper a bit.  And then, later in the week, as I get some IV hydration and some anti-nausea meds, they push the dose up again temporarily.  And then, I taper off the medicine for the week after chemo.

So, I really think that the dex is creating the illusion that I'm not exhausted, and it's letting me work out during chemo weeks.

To be honest, I'm drained so much right now that my legs actually ache when I'm sitting in a chair doing nothing.  Pain medicine takes the intense ache away, but not the fatigue.  Yesterday, I was so tired that I walked fewer than 1500 steps all day.  My plan was to go for a walk after work.  My wife suggested that we drive home and walk the dog.  I argued a bit, but ultimately agreed.  I didn't argue because I didn't want to walk the dog.  I love going out for walks with the dog and my wife.  I just knew that I was tired enough that I would fall asleep on the drive home and then be too tired to walk with my wife and the dog.  And, that's exactly what happened.

I slept on the way home.  Took another nap at home.  Cooked dinner (reheated leftovers, to be honest).  Watched some TV.  And, went to bed.

Some Pink Floyd lyrics come to mind:

I gotta admit that I'm a little bit confused
Sometimes it seems to me as if I'm just being used
Gotta stay awake, gotta try and shake off this creeping malaise
If I don't stand my own ground, how can I find my way out of this maze?

I will pretend that earlier in this song that Pink Floyd didn't talk about an old man dying of cancer.  That's not the part I was thinking about.

So, how can I find my way out of this maze?

For now, I am trying the following:

  • Take advantage of the dex.  Exercise during chemo weeks when I'm feeling better.
  • Modify the CrossFit workouts so that I can get through them without making things worse.  I'm not making any apologies for scaling the workouts.  I'm doing what I can.
  • In my non-chemo weeks, do my best to do CF every other day.  If I can go every other day, even at a lower level of effort, that should be enough to maintain some level of fitness.
  • Take advantage of spring weather and walk as much as possible.  This can be hard when my legs ache so much, but I have to make the effort.
  • Listen to my body.  Last night, sleep won over a walk.  I simply need to accept that and move on.  There is no sense beating myself up over something I can't control.
  • Know that things will get better as chemo winds down.
  • Know that every workout I do now will make my recovery from surgery go that much better.
  • Focus on the little things now, knowing that the little things will add up to success in the big picture.
During my chemo a year ago, I was never this tired.  I honestly assumed this chemo was going to be easier, not harder.  My doctors have made it clear that this is a tough chemo and they think I'm doing great.  It's only by my own warped standards that I'm struggling.

But, I will press on, train when I can, and appreciate those days that I feel good enough to train.