Friday, March 24, 2017

Status Quo

I'm still feeling a lot like I felt a couple days ago.  No energy.  No appetite.  Tired and achy.  For someone who trains like I do, this has been a tough week.  I'm just not used to feeling so run down, and I can almost always find a way to train at least a bit.  But, as of now, I've done nothing for three straight days.

I finally gave in and called my oncology nurses yesterday.  It's really nice that the oncology center has two triage nurses dedicated to patient problems.  I don't always get them on the first call, but I can be talking to them within an hour of any problem that arises.

After explaining what's going on, they agreed that I'd probably crossed the line - done more than my body was up for, and now I'm paying the price.  They were very glad that I had no fever.  They had a few ideas that we could try now, but it was mostly hydration and I think I'm doing OK there.  They also suggested a multi-day infusion of an anti-nausea medicine, but I'll be getting one of those on Monday with chemo, so I deferred.

We did come up with a plan for next week though.  Just some ideas to help me through the period between the chemo infusions.  We are going to do some hydration next Friday (after chemo on Monday) and add a multi-day anti-nausea medicine to the mix, hoping that those two elements will prevent this from happening again.

They would also like me to consider a somewhat lighter training load until I'm feeling better.  Given how I feel, I'm not going to argue.

I'm mostly curious where my weight will be on Monday.  From the first to second round of chemo, my weight was unchanged.  From the second to third, when I'd dealt with more nausea, I'd dropped 4 pounds.  This past week, if it wasn't for medical MJ, I doubt that I would have eaten at all in the past week.  I can barely taste food, I have no appetite, and I'm actively nauseous a lot of the time.  I think it's been 3 days since my last cup of coffee - a sure sign that I'm not feeling well at all.

Yesterday, I didn't eat a bite of food all day and I wasn't even hungry.  I finally felt a little bit hungry about 7:00, so I ate a medical MJ brownie.  After that took effect, my appetite came back and I had some pizza plus a slice of cheesecake for dinner.  That's not my normal diet, but these aren't normal times.

Tonight is the 5th and final workout of the CrossFit Open.  It's a hard workout - 9 barbell thrusters and 35 rope-jumping double unders.  Times 10.  For time.  With a 40 minute cap.

I really want a score, but it would honestly be stupid to do this entire workout.  So, I have a plan that will allow me to say I finished the Open, even though my last score is going to be pathetic.

I am going to do 9 thrusters tonight and then quit.  I'll then report that I failed to finish the workout in 40 minutes (this one should take me 18-20 minutes under normal conditions), and report my score as 9 reps in 40 minutes.  I'll finish last in my regional competition, but I'll have a score, I'll be able to sort of claim I "did" the Open.  Essentially, I'm going to score badly and then claim a victory of sorts.

I doubt that anyone will give me any grief for this, given that I've been doing the Open through chemo.  I just have to listen to my body (and my nurses) on this one.

I must live to fight another day.

Tuesday, March 21, 2017

Over the Line Smokey; Mark It Zero

I'm exhausted.  There is no other way to describe it.  I did the CrossFit Open workout on Friday night.  It was only a 13 minute workout, but I went hard.  Lots of deadlifts and wall balls were part of the workout, and my back is still a bit torched.

On Saturday, I skied harder than I have all year, leading a group of hard charging 8 year olds all day.  After a warm-up run on easy terrain, every run we did was in the trees or on steep bumps.  My calves are still sore.

Sunday was a rest day.  We took my daughter back to Syracuse after her spring break.  I drove some, napped some, and I wish I'd napped more.

Last night, I did CrossFit again.  This was a simple workout - 9 sets of squats followed by 10 x 30 seconds of burpees.  And, today, I've just got nothing.

I simply ache deep in my muscles, in my bones, and all I want to do is sleep.  Yet, somewhere in the back of my brain, I keep hearing a voice telling me to do CrossFit again tonight.  I think I'm strong enough to ignore that voice though.

I want to pick up my wife after work, nap on the way home, eat some dinner and go to bed.  I honestly hate to admit that.  But, it's the way things go sometimes.  I am not in control here, and it's easy to imagine making myself sick by pushing too hard.

So, tonight, I'm gonna take a zero, and hope I feel better tomorrow.

Thursday, March 16, 2017

Just thinking out loud...

A friend just made a comment to me in an email, saying that my chemo would "stop him cold".  I told him that I'm in a four month struggle with this chemo and I don't have time to just sit around feeling sorry for myself.  I told him that I can't just sit on the couch with a vat of ice cream, and put my life on hold until I feel better.  Today may be better than the future.  So, I've got to do what I can, when I can.  It's really that simple.

In reality, I think it's the sudden prospect of a different future than I'd always imagined.  And, it's not even that "sudden", but the cumulative effects of treatments, the realization that a cure will likely never happen, and that soft tissue sarcomas simply reduce lifespans.

I have to live with that every day.  I see three ways I could react to this reality.  I could live in denial, with no changes in my life, except for treatments.  I could do the treatments, and then give in to the inconvenience and lowered quality of life.  I could sit on the couch, watch TV, give up the gym, give up skiing, give up cooking, and simply wait for the end.  Or, I can decide to live the hell out of my life.  Technically, there's a 4th scenario, but that is ending all treatment, and I'm not ready for that quite yet.

So, I choose the third path.  It's not a hard path for me to choose.  It's how I've always lived my life.  Full speed.  Head on.  Get out of my way.  I've joked for years that there will be time to sleep when I'm dead.  I still believe that.

I'm trying to not be stupid.  When my body needs rest, I rest.  Last weekend, I took the weekend off of skiing because the temperatures were very cold and I wasn't 100%.  I slept a lot that weekend.  But, I also cooked a lot.  I tied a lot of flies.  My wife and I went to a beer tasting.  I watched a movie I've been wanting to see (regretfully, it sucked).  And, I lifted weights on Sunday.  For the most part, I consider that to be a rest weekend.

My current chemo regimen will go through the end of May, at least.  If the chemo works, I will then have surgery in June or July.  If it doesn't work, we will try another treatment.  We will try until something works and I can have surgery, or until we exhaust all options, or until I decided that quality of life is more important than the side effects of the treatments.  I have no idea which way this path will lead.

I could easily be gone in a year, to be perfectly honest.  Or, I might be here for another 5 years or 10 years.

It is odd thinking that this could be my last ski season as an instructor.  That my last trout season might be starting in a few weeks.  Or that I might have to leave a job that I love for health reasons.  My current job is the most fulfilling job I've ever had.  I work with smart people, committed people, people who want to improve the state of healthcare in our country.  And now, as a major consumer of healthcare, the work seems that much more important.

I worry that I won't live to see the end of our current President's tenure.  I want to see my children graduate from college.  I want to see them blossom into young adults, fall in love, and live lives of their choosing.

And mostly, I want to spend my life with my wife.  That is the hardest part of all of this.  I've been on this planet for 55 years now, and I've spent 34 of them with my wife, 30 of them married.  This means more to me than anything else I've mentioned above.  I know she's a strong and tough lady.  I know she will be OK.  But, if something happens to me, it's going to hurt her.  And, I'd do anything to avoid that if I could.

But, don't feel sorry for me.  This isn't a post where I'm asking for sympathy.  I've lived a hell of a good life.  I've had some amazing adventures.  I've lived all around this country of ours.  I know so many good people that I feel privileged to call my friends.

Sometimes, the story just has a different ending than you hope for.  That doesn't make the story a tragedy though.  It just makes it different.

And for now, despite the circumstances, there is no ennui here.  Not too much sadness.  Just a need to live my life as it exists now, to do the things I love, with the people I love.  And right up until the moment that it becomes untenable, that's what you'll see from me.

Tuesday, March 14, 2017

Round number 3 in the books

I spent the entire day at the hospital yesterday.  Things just seemed to drag out all day.  Not one appointment was on time, it seems.

I got there early and the first thing to do was access my chemo port and draw blood for labs.

After that, I had an appointment with a new oncologist who would read my lab work and sign off on the chemo.  Except, I ended up meeting with 2 different oncologists, and the second seemed more interested in conducting a therapy session rather than just getting me to chemo.

I know she meant well and was trying to make a good first impression.  But, she isn't even my new medical oncologist, so I thought it was overkill.

At noon, she was still talking.  At 11:00, I was supposed to be starting chemo.

Finally, about 12:30, I got into the chemo bay and was assigned my seat for the day.  A friend stopped by to visit.  When she left at 2:00, my chemo drugs still were just arriving.  The first drug takes only 30 minutes and the second takes over an hour.

I was able to participate in a company meeting from 3:00-4:15, and my chemo finally finished about the time the meeting finished.  By the time I got out of the hospital, it was time to pick my wife up at work.

Regretfully, we were also trading in a car last night, and we had to deal with that.  So, we never made it to the gym.  I'm going to try the gym today, but the first full day after chemo can be pretty rough, so we will see how it goes.

We did make one little mistake with our car trade-in.  We traded a car with studded snow tires for a car with no snow tires.  And, we are supposed to get 18"-26" inches of snow from a storm today and tomorrow.  So, we opted to not go home the next 2 nights.  We left the kids a car with snow tires and lots of food.

My wife and I will be staying at Hope Lodge at the hospital.  Trying to get home in this storm seemed too risky.  And, if I had a reaction to the chemo, getting back might be impossible.  So, staying close seems to make the most sense to me.

This was my 3rd round of chemo.  We have tweaked the meds for after chemo after each of the first two sessions.  I had a rough night last night, but I'm feeling better today.  I'm hopeful that we are dialing in the process and each remaining round will be better than the first two went.

I think that I will be able to train in the gym tonight, which is a good sign.

Tuesday, March 7, 2017

Feeling like doo-doo

The bottom just seems to have dropped out.  I am exhausted.  All the time.  I sleep in every car ride.  Going to the gym is a horrible chore rather than something I want to do

To be honest, this is really frustrating.

Friday night, I had my CrossFit Open workout.  It lasted only 12 minutes and I was happy with the result, despite the apparent lack of oxygen in the room.  I got home and got to bed early that night, with a long day the scheduled for next day.  And, I woke up feeling like I had the flu.  Despite that, I made it to Sugarbush for the day.  I taught a number of kids how to tune their own skis during the day.  This was a good diversion on a very cold day, even though it meant that I never got to ski at all.

After the ski day, a friend and I headed to Burlington to see Adrian Belew's Power Pop Trio.  It was a great show - a perfect complement to the last time I saw King Crimson, in terms of songs that were played.  All around, it was very impressive.  I stood at the show.  After standing all day at Sugarbush.  By the end of the show, my legs were screaming for a break.

I did manage to get 9 hours of sleep on Saturday night, but I still felt like crap the next morning.  Everyday is the same.  I feel like I have the flu when I wake up.  It doesn't really get any better.

On Sunday, I managed to go out for brunch with friends and my wife, get some groceries, watch some basketball, tie some flies, and do some cooking.  To me, that's a rest day.  But, by Monday morning, same result.

Monday night's gym workout was a disaster.  I simply didn't want to be there and my effort was commensurate with my attitude.  Even scaled, it sucked and I hated every minute of it.

Today, I have started to take a new medicine - something everyone has heard of - to help with my focus and concentration at work - something to fight the brain effects of the chemo.  It wasn't my first choice, but I need to be better at my job if I'm going to collect my paycheck and feel good about that.  Chemo brain (google it) is a real thing.

On the way to work this morning, I slept the entire drive.  After dropping off my wife, I drove to my office.  Napped in the parking lot.  I finally came inside and took the new medicine.  It certainly hasn't taken effect yet, and I could easily take another nap.

The idea of CrossFit tonight repulses me at the moment.  That doesn't mean that I won't do it, but I feel like there are 2 main issues right now.  First, as I'm trying to live my "normal" life as much as possible, is that simply too much for what I'm dealing with?  I've been told by docs to do whatever I feel up to doing.  But, I'm not that average cancer patient and I'm probably doing way more than most others in a similar situation.  I'm guessing there aren't many athletes in the CrossFit Open doing chemo during the Open.

First of all, is it good for me?  Or, would I be better served by "turning it down" a bit?  I just don't know the answer to that question.

Secondly, what is the net effect, if any, of my exercise and go-go-go lifestyle on the disease I'm fighting?  Last night, I admit that I couldn't think of one real reason that my workout was helping.  It's not curing my cancer.  It's not going to prolong my life necessarily.  And, it wasn't fun.  Now, I've had a few surgeries the past few years and I've recovered well from them.  A big part of that is my fitness and training routine.  For someone my age, I am in well above average shape.  Yeah, I'm somewhat overweight, but I'm also fairly fit.  Will that help me in a future surgery?  Is it helping me with this chemo?  If so, how much training is enough and how much is too much.

Or, am I forcing myself to exercise, doing more than my body is ready to tolerate, potentially making my disease worse, and not having fun while doing that?  That would be the height of stupidity, to be honest.

But, maybe there is a value that I don't see.  Maybe it's mental.  Maybe it's simply not giving in to this fucking disease and choosing to live life on my terms.

I just don't know right now.  The one thing that seems obvious is that I should not train hard day after day after day, especially if the training sessions themselves are miserable every time.  I need to see some tangible benefit to my training.

OTOH, I don't want to sit on a couch, napping, eating ice cream, and waiting for the grim reaper to show up.  When trout season arrives, I need to be strong enough to get out of the house and fish, even though I'll still be doing chemo for the first couple months.  I'm not ready to just quit doing the things I love, and some of what I love, I can do well because I train so hard the rest of the time.

I just don't know the answers.  I assume I'm some sort of outlier here.  I've always taken exercise to an extreme level.  I'm better now than I was, but my entire life is based on a go-go-go attitude.  For years, I've said there will be plenty of time to sleep when I'm dead.  I still believe that, but I don't want to hasten anything along.

Perhaps some sort of moderation is in order.  I think I need to spend the next week or two just listening a bit better, trying to figure out what makes the most sense for me.  Maybe I'll never know.  Maybe I will find a sweet spot.  To quote XTC, it's "just a complicated game."

Thursday, March 2, 2017

Half a Hawks

Only someone from my CrossFit box would possibly know what that subject line means.  Ryan Hawks was a professional freestyle skier who died in an accident at Kirkwood six years ago.  I have taught skiing with his father for most of the last 2 decades, and I got to know Ryan in the early days of our gym.

He was an amazing athlete - skilled, athletic, mobile, explosive, and yet very humble and just a regular guy.  The first time I asked him and his winter skiing buddy about what they did out west, they talked as if they were just a couple of ski bums, driving around, finding an occasional competition, and giving it a try.  In reality, Ryan was so much more than that, and I'm glad I got to know him a bit in the early days of Champlain Valley CrossFit.

But, he did die six years ago when he failed to navigate a landing after a big jump.  He was a lifelong friend of the owner of our gym, and our owner, Jade, put together a killer workout for us to do twice a year to honor Ryan.  Here is a video about Ryan for those unfamiliar with him:

The workout is as follows:

As Quickly As Possible
Row 1000 meters
50 deadlifts
50 thrusters
50 box jumps
50 burpees
50/side walking lunges with plate overhead
100 double unders

I think I've done the workout 8 or so times since we started doing this every year on Ryan's birthday and the anniversary of his death.  Because of the cancer stuff, I've had to scale the workout at times - fewer reps, lighter weights, or last night, both.  But, I wasn't going to miss this one, so I opted for half the prescribed reps at the lower end of the weight scale.

I think my best time for the full workout is in the low 40's.  Scaled, I've done it in the 30-35 range.  Last night, I did half the workout in 19:00, and it was all I had.  But, I'm glad I was there to help Jade and everyone else honor Ryan.

Today is a rest day with the next workout in the 2017 CrossFit Open scheduled for tomorrow.