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.

Purgatory.

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.

Wednesday, April 12, 2017

Waiting for updates

I was hopeful that my local docs would get to talk to Sloan Kettering yesterday and confirm our path forward today.  Regretfully, I haven't heard anything yet from them.  But, if MSKCC needed time to read the scans rather than the reports (and I hope that's what they are doing), it might take a couple extra days for that to happen.

I'm just hopeful that we don't have any major changes in our path going forward.  I'm not crazy about the path I'm on, due to the side effects of the chemo, but at least it's well defined, it's more than half over, and I have some level of confidence that we are moving in the right direction.

Starting over with a new treatment regimen would be depressing, to be honest.

On the training front, I'm still struggling a bit.

I rested last week on Thursday through Sunday.  I fished a bit on Sunday, but not enough to count as exercise.  I walked a couple miles at lunch on Monday and Tuesday, but again, not really exercise.

I did CrossFit Monday night, and it was a struggle.  My right hamstring didn't like the squats I did at all, and I kept the weight the same as the past 5 weeks.  No increase, no decrease.  I wish I was more adapted at this point in time.

But, every time I go in for chemo, my weight is down a bit.  I'm sure I'm not losing just body fat.  Some of it is muscle.  It's not a huge weight loss, but 10 pounds in 6 weeks is non-trivial.  So, this might be causing me some strength problems in the gym.

Last night, I did the warm-up, and I could feel that it just wasn't there.  My wife also happens to have a slight knee injury right now, so we both bailed after the warm-up last night.

But, we will try again tonight.

My docs are still tweaking a few meds, trying to reduce my overall side effect burden.  The latest is a medication that will help me sleep a bit better.  The steroids that I take near chemo really mess with sleep.  I have one med that helps with the insomnia, but I also use that drug for nausea control.  We decided that I should use that drug more during the day for nausea control, and we added something new to take at night for sleep.

It was quite effective last night.  I slept like a baby and struggled to wake up this morning.  I think I'll try a smaller dose tonight.


If nothing changes in the next few days, I will resume chemo on Monday.  Hopefully, I can get in a few extra workouts this week, if the fatigue settles down a bit.

And, with spring really here (finally!), I'm hoping to get in some walks with the dog this weekend.  He and I both need some walking miles.

Tuesday, April 11, 2017

How did those scans go?

What a mess yesterday was.  But, before I get into that, I had an error in my last posting.  I do have scans from 1/31, just before I was scheduled for surgery.  And, I have scans from the first week of November.  And, I got a scan last week.  For some reason, I had forgotten about the scan on 1/31, but my wife remembered the fact that I'd had it.

Yesterday morning, I found a scan report in the patient portal as I was on my way to chemo (my wife was driving).  The changes were not positive at all, and it was clear the current chemo isn't working.  I sent the following to an online liposarcoma group that I am part of:

"I'm on my way to the hospital for chemo, which I'm sure will be cancelled. I have the CT report.

Three of four tumors have grown and the fourth likely only shrank because of previous radiation, not the chemo.

It sounds like 2 of the tumors are trying to invade the colon.

Lungs are still clear. I'll find out more from the doctor this morning.

Clearly gem/tax has failed. Not sure what will be next."

I got to the hospital and checked in.  I told them that they probably didn't need to access my chemo port or do any blood work as I registered, and asked them to confirm this with the doc.  They were able to do so.  My heart sank a bit more.  The doc knew the chemo wasn't working as well.

After killing some time with coffee - the time I'd normally be in the lab, it was my time to see the doc.  Only, it was unusual that they didn't send the resident in right away.  I really like the resident. She is smart and energetic and no-nonsense.  She gets right to the point.  And now, I expected, with bad news, they were making the doc come in first.

Finally, the doctor poked her head into the room.  She told me there was a delay and a bit of chaos because they had accidentally compared my November CT scan to my new scan, and the report I had was invalid.  They were working on a new report.

At this point, I didn't know whether to be furious or relieved.  Or both.  I still didn't know if the report would be better, but my big concern about comparing to an invalid report had happened and the hospital had released that report to me, with a typo clearly showing it was a comparison to the January report.  And yet, that's not what it was at all.  This is a terrible mistake to make, and it's even worse to release the erroneous report to the patient.

Finally, the doc made it back into the room, and we went though the report finding by finding by finding.

The biggest tumor, the one irradiated in September, shrunk some more.  It appears to be dead.  There are some changes to the liver where the tumor and liver are touching, but everyone agrees it's from the radiation and not a spread of the cancer.  That tumor still needs to come out.

The second biggest tumor has shrunk measurably.  It is adjacent to the colon and may require some resection to remove, but it's shrinking.

The next biggest tumor didn't really change size.  But, the tumor density changed and the word necrotic was used to describe the tissue.

Only the 4th tumor was worrisome.  It is touching the colon and it did measurably grow since the last scan.

Lastly, there are no new tumors.  None at all.  So, minimal growth in one tumor.  Regression in most.  Nothing new.  In reality, that's all pretty good.

In summary, the oncologist said that my disease is at least stable, and possibly regressing.  She said that the one tumor may simply need another shot or two of chemo and it will also turn around.  She believes the chemo is working, although it's not a super-strong response like I had with the previous chemo.

She said that, in total, with the disease state, my health, how I'm tolerating the chemo and still training, and my lack of complications with a very tough chemo, she said she'd grade my progress as an "A".  I find that a bit optimistic, to be honest.  To me, progress is against the disease, and that seems to be a tie or perhaps a slight lead for me at the moment.  Not a slam dunk.  Not an "A".

So, she gave me the week off of chemo.  Said I should let my body recover a bit.  Said that 8 rounds is very aggressive and we might want to stop at 6 or 7.  Said she will talk to Sloan Kettering today to get concurrence from them.  She thinks we are on the road to surgery and hopes they concur.  Chemo starts again next Monday, barring any disagreements from Sloan Kettering.  And, perhaps my surgery will be a bit earlier than I had planned for, but if we can simply get to surgery right now, I'll be thrilled.