Monday, December 28, 2015

Getting back to normal

I had my last IV infusion (for hydration) after the second round of chemo last Wednesday.  My IV port was de-accessed afterward, and shouldn't be accessed again until 1/6.  Last Thursday, on a day with record-setting warm temperatures, I got out for a nice walk with my dog.  It was a windy day and we lost electricity for a few hours.  I have to admit that 3 hours of quiet darkness was kind of welcome early on Christmas Eve.

My nausea is a lot better.  I'm still taking some medication, but it's as-needed rather than on a schedule.  The bone pain that comes from the Neulasta injection started to show up on Thursday.  I felt it in my sternum for the first couple days, and then in my lower back, hips and femurs yesterday and today.  I have some pain medication that works very well against this pain, and I should be able to return to CrossFit today.

We had a really nice Christmas.  There weren't huge numbers of presents, but it was just a day to be surrounded by family.  I got a pressure cooker that produced an amazing dinner really quickly last night.  A record.  Some concert tickets.  A book.  And some cash.  I got my wife some new workout clothes and some nice jewelry, including a beautiful but simple diamond pendant from a jewelry maker named Adel Chefridi.

But, it was really just nice to be with family for the day.  Yes, I know I repeated myself there, but I'm sticking with it.

Saturday, I headed to Sugarbush to teach skiing for the weekend.  Because we have limited terrain and the ski season is off to such a poor start, not many skiers showed up.  Conditions were firm (read: icy) for most of Saturday.  I was assigned to teach the students I had last season, which had me very excited.  Regretfully, only one boy showed up, so I didn't get to see everyone.

The mountain is sending a second coach out with me every day I work.  I've been protesting this a bit.  My main argument has been that I'm there to work, and I don't want them to be doing me favors.  If they need me, I'm there.  If they don't, I'm OK with that.  But, after a conversation with a friend on Saturday, I decided to stop arguing with my boss.  I have worked for the mountain for many years; I'm in my 16th season as an instructor.  They've made a lot of money from my work in those years.  My boss sees me as an integral part of her team.  So, I'm just going to take the help.  And, from their side, if I do have a problem, there is a second coach to take over, so I know they are protecting themselves as well.  To paraphrase Kevin Costner in Bull Durham "I'm just happy to be here and hope I can help the ballclub."

The second coach I had on Saturday was young, but he's a solid coach.  Because we only had one student between the two of us, I worked with the other coach as well.  The other coach noticed a fundamental flaw in our student's skiing.  I was already working towards fixing it, in two steps.  He suggested addressing the problem directly, but I suggested a different approach that seemed unrelated to the issue at hand.  But, my suggestion, which was simple for the 7 year old student to implement, worked.  It was a "teaching moment" for the other coach.  He saw an alternate way to go about fixing an issue.  I even coached him on his personal skiing as well, so I think we had a good day.  Our student got better and another coach got better as well.  I wish I could say that I felt like I skied well, but the icy conditions had me bracing against my outside leg too much and not flowing downhill very well.

On Sunday, I had a different second coach, but no students showed up at all on a rainy morning.  I went out and skied on my own for a while, and I was able to relax in the soft snow.  It was the first time all season that I felt like I was skiing at the level I expect of myself.  After free skiing for a while, I attended an indoor clinic, and learned some new stuff.  All in all, it was a good day despite the rain.

Tonight, it's back to CrossFit, and I'm very excited about getting to lift tonight.

Monday, December 21, 2015

Done with Round #2

I was released from the hospital on Saturday night rather than Sunday morning.  The pharmacy was able to mix all of my chemo drugs quickly all weekend, and the doctors sped up one medication to get me out a bit early.

I finally got disconnected from the IV for a while on Saturday and happily walked 12000 steps around the hospital before I went home.  In 4 days in the hospital, according to my FitBit, I walked 5K, 5K, 8K and 12K steps - those are thousands of steps, not kilometers.

My nausea was a little bit worse than last time, but it's been manageable so far.  I just have to remember to take Zofran or Compazine every 4 hours, and be careful what I eat.  I was able to eat dinner last night, but not the dinner I made for the rest of the family.  Some things just don't sound very appetizing right now.

I returned to the hospital this morning for a liter of IV saline and a shot of Neulasta.  I had no idea until this morning how expensive Neulasta is.  I get one injection after each round of chemo.  The average wholesale price per injection is about $5K, and the retail price can be almost $9K.  My wife told me that the Explanation of Benefits from the insurance company showed about $20K in expenses for the entire first round of chemo - all drugs and appointments lumped together.

Late this morning, I got confirmation of my appointment with Samuel Singer at Memorial Sloan Kettering Cancer Center in NYC.  I will be seeing him in January and he will probably perform surgery on me in late February or early March.  He has already been consulting with my oncologist on my chemo regime, so he is aware of my case.  He is widely considered one of the top liposarcoma surgeons in the US, if not the world, and I'm glad I can be treated by him.

For now, the goal is to recover from the chemo.  I will probably rest today, but start walking on the treadmill again tomorrow.  I need to catch up on my sleep.  The nausea will fade day by day.  My taste buds will start working again by the end of the week.

Then, over the weekend, I'll get to deal with some bone pain from the Neulasta, but that's just something I have to endure.  I've heard that the pain can lessen with each dose, which would be a welcome relief.

And then, if I recover well and the temperatures on Thursday don't melt all of the snow in Vermont, I'll be teaching skiing this coming weekend.

Friday, December 18, 2015

Two days into chemo cycle

I've got nothing unusual to report.  Some mild nausea - maybe worse than last time - but we are staying on top of it with meds, hoping to prevent any vomiting like I had last time.  I can still drink coffee, so the nausea can't be too bad.

The dexamethasone is causing its normal water weight gain, and some headaches, but Vicodin works great for the headaches.  I've been getting the Vicodin and then taking my IV pole for a walk in the evenings.  I wear a FitBit and I'm trying to make sure I get at least 5000 steps per day, which is tough when limited to a single hospital corridor. One of the chem drugs is so toxic that they'd need a Hazmat team if I wandered off the floor and it spilled.  So, my walking is very limited.

Food is still going down OK, although the list of what sounds appetizing is shrinking.

I've been planning a New Year's get together with some old college friends. The thought of that and being out of here for Christmas is helping a lot.

Otherwise, I'm trying to get some work done to pass the time, and I'm working my way through House of Cards at night.  Last night, I got 9.5 hours of sleep.  That's good, because once the chemo stops, I'll have a couple nights of insomnia due to the steroid.  So, I want to sleep now while I can.

I guess everything is just about where I expected.  The next big moment of anxiety will be the results of my next CT scan on 12/31 to see if the chemo is helping.  Plus a visit to the Big Apple to meet my new surgeon. I wish a wintertime trip to NYC could be more of a vacation, but we have other priorities at the moment.

Tuesday, December 15, 2015

Half full or half empty

Last week, I went to CrossFit Monday through Thursday.  It was the first time I'd done CrossFit on 4 consecutive days since mid-June.  In June, I was fighting anemia, and the comments in my training log indicate it was very difficult for me to get through those days.  Just a week later, I basically gave up on training as the anemia continued to get worse.

But, last week I did those 4 days with no problems.  I was sore, but I had the energy to get through them.  I took a rest day on Friday (long day in the car for a college trip with my daughter).  Saturday and Sunday, I worked at Sugarbush, but I never actually put on my ski boots.  But, I was on my feet for seven straight hours both days, helping out with very young ski students, and my FitBit says I walked a lot of steps.

Last night at CrossFit, I felt strong.  I don't mean weightlifting-strong.  I'm still far from lifting weights anywhere near my PRs.  But, I did 5x10 back squats before the metabolic conditioning.  In the latter part of the workout, I found myself keying off a friend - racing him through the workout.  In the end, I beat him by a single jump rope rep.  It was six minutes of pain and it felt good.

Today, I went to CF at lunch.  We did 7x10 rack pulls and I used a pretty decent amount of weight for the 70 reps.  Then, the metabolic conditioning was pretty simple - just two basic movements.  But, again, I felt really strong and pushed through with no rest at all.  It was easily my best workout since March or April.

And yet, it's kind of bittersweet.  It took forever, it seems, to figure out that I had anemia this year.  Then, it took a long time to figure out why I had anemia.  Then, major surgery with a long recovery.  Just as I started to feel better from the surgery, I found out the first surgery hadn't eradicated the weird, rare cancer that I have.

Three weeks ago, I started chemo.  It knocked me for a loop, but I was walking for exercise 2 days after the chemo ended, skiing 6 days after, and doing CrossFit 8 days after.  Today, I felt like I was clearly in better shape than I was just 3 weeks ago.

Tomorrow, the chemo starts again.  I'm not looking forward to that at all.  But, I also recognize that it's a choice I made and I'm sticking with that choice.  I went with the higher risk, higher reward treatment option.  Chemo is part of that.

Part of me thinks that maybe 3 weeks from today, I'll be writing that I'm even stronger than I was 3 weeks earlier.  And, part of me worries that each successive round of chemo will take more out of me than the previous round.  At the end of the fourth round of chemo, I'll be having surgery.  I want to be as strong and fit as I can be going into that surgery.

So, today's workout was awesome.  I may be able to sneak in a 5:45 CrossFit class tomorrow, but I'm betting that it's just too early for my wife, who has a very long day tomorrow.  So, my next CF class will probably be 12/28.

I just wonder which way things will go.  Will each round get worse, or will I be able to eke out a net improvement in my fitness each time through?  Only time will tell.

Thursday, December 10, 2015

A brave face is pretend a lot of the time

I feel like I've just gotten over the last round. I've lost my hair and shaved my scalp. The bone pain from Neulasta is gone. I skied last weekend and I've been to CrossFit the past 3 nights. I feel pretty much normal again. Well, except for the bald thing. And, I don't take that lightly. I know many patients don't get to feel normal ever.

Yet, I'm wracked by anxiety. I've gotten about 7 new appointments in the past 24 hours. Port connection and bloodwork. Meeting with oncologist. Checking into the oncology ward next Wednesday for 5 days/4 nights. Three days of post-chemo IVs and more Neulasta. Another CT scan on 12/31. A consult at Sloan Kettering the following week. 

My wife thinks my anxiety has been because of my hair. I think it's because I'm dreading starting the chemo cycle again. I feel like I'm on a roller coaster and every time we come through the station, I ask to get off, and they just send me out for another loop. Every time I wake up at night, I think to myself "Maybe it was all just a bad dream." And then I remember that it isn't. 

Sorry. Just venting a bit.

Wednesday, December 9, 2015

A day I was dreading

First, let's talk about CrossFit last night.  We started with 10x3 sumo deadlifts.  I hadn't done sumo DLs for a while and I had to remember how to get the starting position just right, to minimize the risk of injury.  But, it didn't take long to settle in and get it right.  I did 2 sets each at 165, 175, 185, 195, and 205.  All in all, they felt pretty good.  I had to be careful that nothing affected my chemo port, but the lifts felt fine.

Then, a 7 minute up-ladder of 3 push-ups and 3 ball slams.  I did knee push-ups and used a 30# slam ball.  The round of 3 and round of 6 went by fast.  And then, my triceps started to get tired.  This made push-ups very slow.  On the round of 9, I did the push-ups as 6 and 3.  But, on the round of 12, I was reduced to doubles.  On the round of 15, I did 7 doubles and a single.  I was losing all of my time to knee push-ups.

I ended up finishing the round of 15, and doing 18 ball slams and 10 more push-ups.  I was pretty happy with that, considering I'd skied on Sunday and Monday, and done CrossFit on Monday.  I'm a bit sore today though.

This morning, when I got out of the shower, I had hair in my eyes.  Multiple hairs.  I had to put on my reading glasses to even find the hairs and brush them away.  Then, something occurred to me.  I wasn't expecting to lose my hair due to the chemo for another week or so.  But, I looked at my towel.  It was covered in hair.  I reached up to my head and grabbed a small clump of hairs and pulled.  They came right out of my scalp.  Dammit.  I wasn't quite ready for this so soon.

I've heard people describe the day that you lose your hair as one of the toughest days in the process.  While I imagine it's true for some people, I would guess it's tougher for women than men.  It's simply not uncommon to see men who are bald, so it isn't noticed as much.  So far, it's a novelty, but not really bothering me that much.  I knew it was going to happen sooner or later.

On the way to work, I realized that the hair was just going to continue to fall out all day.  I'd be shedding everywhere I went.  So, I called the place where I get my hair cut, and told them I needed a very tight buzz cut to fight the shedding.  Because it could be done so easily, they squeezed me in with the woman who normally cuts my hair.  She buzzed my head and my facial hair in just minutes.
I've been getting my hair cut here for 14 years, and I've outlasted a few different employees who cut my hair in the past. The lady who cuts my hair these days, Chantal, knew what was up and why I needed it cut so quickly.  They told me it was on the house and didn't charge me.  I did still give Chantal my normal tip, but I very much appreciated their kindness.

I will probably shave things more cleanly, and I suck at taking selfies, but this is the new me:

I talked to the nurse at the oncologist's office this morning.  We are starting to set up all of the appointments for the second round of chemo, which starts a week from today.  Between now and then, I've got a lot of CrossFit and skiing to do.  Plus, I get to spend an entire day with my daughter on Friday.  Her in-person interview for admission to Syracuse is Friday, and I'm making the trip with her.  I'm looking forward to that trip very much.  I'm not sure if she's looking forward to being stuck in the car with her dad for 10-12 hours though.

Tuesday, December 8, 2015

Post-chemo updates

I had some of the expected side effects after the first round of chemo.  I'm going into chemo in reasonably good health, except for the cancer cells in my abdomen that want to kill me.  I feel good and I was training hard right up until I started chemo.

I had to go to the hospital for the first 3 days post-chemo, just for a saline infusion.  The chemo messes with your taste buds, your sense of thirst, and it causes nausea.  I assume that the doctors think the patients won't drink enough, so they use IVs to maintain hydration for a few days post-chemo.

I had some odd taste sensations for a few days.  Cold drinks didn't feel cold.  I was nauseous.  My appetite was off.  I was worried about bone pain that can be caused by a medication called Neulasta, that I got the day after chemo ended.  I thought I had gotten lucky, when I got to Friday afternoon (after a Monday injection) and I had no bone pain.  But, it started to show up on Friday night, and it got worse through the day on Saturday, while I was skiing.

Saturday night, the pain got very bad and it had me shaking uncontrollably when it woke me up at 3:30 a.m.  Some high test pain medication and some blankets to keep me extra warm got things under control.  But, I was also scheduled to teach a skiing clinic on Sunday and that was challenging.

I was getting hit by waves of pain during the clinic, sometimes as I was talking, but sometimes as I was skiing.  I was trying to show good demos to other ski instructors, and all I could think about was pain.  But, I think I held it together OK and the clinic went well.  As soon as that clinic was over, I told my bosses I was done for the day.  I went home, took some pain medication, and I took a nap.

The pain now seems to be past its peak, but it's not fully gone.  I have three more of these shots in the next 2 months, and I hope the pain does not reach those same levels each time.

During the first few days after chemo, I was limited to walking as my only exercise.  I rested Monday, walked for an hour on Tuesday and Wednesday, and then rested 2 days, knowing I was going to ski on the weekend.  I didn't ski a lot of runs, but it took enough out of me that I'm glad I didn't ski any more.

Yesterday, I returned to CrossFit, but with orders to take it easy compared to my normal workouts.

The first part of the workout was 10x3 front squats.  I can't do front squats because of the chest port that's been installed to administer chemo.  If I rolled a bar across that sub-surface device, I'm sure it would hurt like hell, and maybe damage the device.  So, I did back squats, and I took it easy.  I started at sets of 95 pounds and eventually worked to 150.  With a PR of 375, I think that counts as taking it easy.

Next, we were asked to complete 3 rounds of the following, as quickly as possible:

100 single-unders (rope jumps)
30 sit-ups
10 hang squat cleans

For the cleans, I limited myself to only 45#, again to protect the chemo port.  I could still feel some after-effects of the chemo and my cardio system was less than 100%.  I got through the workout in 10:36.

In just 8 days, I'll be back in the hospital for the next round.  My goal between now and then is to exercise as much as my body will tolerate, without making myself sick.  And then, we start all over again.

Obviously, I need to make some concessions to these treatments.  I need the treatments if I'm going to have any hope of a cure from this beast.  But, I'm going to concede as little as possible, and try to live my life as normally as possible.

Friday, December 4, 2015

Chemo Update - Round 1

I seem to have survived round 1 reasonably well.  I'm getting two very strong medicines, and one of them, doxorubicin, is toxic enough that it should never touch your skin, but they can gleefully pump it through my bloodstream.  I saw my oncologist on Wednesday and she said "You look pretty good considering what we did to you last weekend."  Uh, um, thanks???

My first round of chemo started the day before Thanksgiving.  The treatments ended just before midnight on the Saturday night after Thanksgiving, although I stayed the night in the hospital.

I did have nausea and threw up a bit on Saturday morning.  But, Zofran and Compazine are fairly effective against the nausea, so far at least.  I've taken steps to have access to another very controversial anti-nausea medicine as well.  I had to skip coffee on Monday and Tuesday, and I've been eating less than normal, but doing OK for the most part.

I've been able to walk on the treadmill for an hour a few times this week.  That's the most rigorous exercise I'm allowed in the days right after chemo.  But, this weekend, I plan to ski both days.  I probably won't ski all day and I probably won't ski advanced terrain, but I hope to be out there.  I need to be out there for my mental health.

Starting on Monday, I can return to CrossFit until my next chemo, but I have to scale things a bit.  No one-rep-max lifts are allowed.  So, if things stay like this round, I'll have 5 days where I do little other than accumulate steps in the hallway at the hospital. I wear a Fitbit and I walk a lot as an alternative to laying in bed and then needing blood thinners to prevent blood clots.  Then, a couple days of rest.  Then, a few days of walking.  Then, a couple days of easy skiing.  Five days where I can do CrossFit.  Two days of harder skiing.  Then, 2-3 days of CrossFit (I think I'm going to start doing the really early class the morning I check in for my chemo), and it all starts over again.

I'm done with one round.  The plan is a second round, followed by scans and a surgical consultation at Sloan Kettering.  Then, 2 more rounds.  Then, surgery at Sloan Kettering in mid to late February.  And then, another surgical recovery, which I'm dreading.  But, I'll deal with that when we get there.

Then, maybe some radiation, or they might do the radiation during my surgery.  Then, I will wait for the next round of scans and hope this beast doesn't come back at all, and certainly not quickly.

There is still a slight chance for a cure.  But, I know it's very slight and I'm not focusing on that.  My best bet is to hope we eradicate the cells that are called "dedifferentiated".  If we can do that, recurrences should happen less frequently.  Well differentiated cells are easier to fight.  And that might buy me some quality time.  Five to 10 years is considered a good ride with my current diagnosis.

There are still other future options, such as the newly approved chemo drug called Yondelis.  But, I'm hoping that's a long way off.

For now, I want to ski, I want to work out, I want to enjoy the holidays, and I want to keep working a normal work schedule.  I want to spend time with my wife and kids.  I just have to deal with the fact that part of my body is trying to kill the host.  And hope we can stop that from happening for as long as possible, with as high a quality of life as possible.

Overall, I'm in a good place right now.  That might sound bizarre.  But, I'm happy today for no apparent reason.  I can't wait to get to the gym tonight and to the mountain to ski tomorrow.  There are still lots of lifts to make, ski turns to make, and trout to catch.