Thursday, February 23, 2017

Good week - so far

I have been to the gym for the past 3 nights and all three workouts went pretty well.  I was gassed in last night's metabolic conditioning - a 12 minute rotation of rowing, kettlebell swings and box jumps with no rest (do each for one minute at a time and then move to the next until 4 rounds are done).

But, my strength work was solid this week and I'm feeling better.

Which means....

It must be time for more treatment.  Today, I get a chemo port installed.  I have had a chemo port in the past and I have to say I hated it.  Last summer, when it looked like chemo might be in the past, I had it removed because I disliked it so much.  It's terrible in the gym.  If I'm doing burpees and bump it, it hurts like hell.  Front squats and thrusters are also scary as any pressure from a barbell touching the port is painful.

But, my first treatment with gem/tax left me with a sore vein in my arm.  Twelve days later, I can still feel the vein.  I don't want my veins to get scarred, and a chemo port gets the chemo into the bloodstream and diluted quickly, so it's the way to go.  I guess.

I will have it installed on my left side rather than my right this time.  This should reduce irritation when I'm fly fishing and it will make my normal sleep position more comfortable.

Tonight, the first workout for the CrossFit Open will be announced.  The Open is a series of 5 scored workouts over 5 weeks, and starting at age 55 (my current age), the workout is scaled for masters athletes.  And, if the scaled workout isn't doable, there's even a scaled version of the scaled version.  So, being my first year in the new age group, I signed up.

I also have chemo tomorrow.  So, I will go to the hospital for chemo and then go immediately to the gym.  Right after chemo, I will have had some anti-nausea medicine, and I have a small window where I will still feel OK.  My plan is to squeeze the Open workout into that time window and hope that I do OK.

For 3 of the 5 weeks of the Open, I will go straight from chemo to the workout.  The other two weeks will be "off weeks" from chemo, and I hope I feel good on those weeks.  Last week, I felt pretty rough through Wednesday, but things turned around a bit on Thursday, so I'm hopeful.

For anyone wondering, I do have my oncologist's permission to do this, as long as I don't have a fever or other signs of illness.  It's not how most people deal with chemo, but I refuse to just sit around and rest and mope after a treatment.  There's too much life to be lived out there.

Regretfully, I know I won't be up for skiing this weekend, so it will be a fairly calm weekend.  Saturday is supposed to be warm, so I'm hoping to get the dog out for a walk.  I hope to tie some flies and get more of my gear organized for trout season (39 days until the season opens).  And, I'll do some meal prep work for the following week.  With our long commute, I really need to be able to put dinner on the table in 30-45 minutes when I get home at night, and that simply requires some weekend cooking to make it happen.

Hopefully, the Monday after chemo will go much better than last time.  I think that the use of more dexamethasone should help.  I am "sensitive" to this medicine and I have to be careful how much I use, but it helped a lot in the first round, and I'll talk to my oncologist tomorrow about how to use it for this round.  Instead of just 3 days, I'm sure we will continue it for a week or more after chemo.

Monday, February 20, 2017

Recovering Bit by Bit

So, my first gem/tax chemo session is now 10 days behind me.  I'm still feeling a bit tired, a bit nauseous, and I wasn't up for skiing this past weekend.  It's going to be a rough 4 months, based on what I've seen so far.

I did talk to the nurses who work with my oncologist late last week after I sent them a rather whiny e-mail.  They have some ideas on how to make some things go better in future rounds.  One possibility is the use of more dexamethasone.  I have a sensitivity to this drug and I have had adverse reactions to it in high doses in the past.  So, they've deliberately kept me on the lower end of dosing with this drug, but we are going to try more.

We might also try some IV hydration sessions in the days after my infusions.  I also think I'm going to plan to work from home the Monday following each infusion, which was the nadir of how I felt in this last round.

But, the list of side effects is pretty substantial, and my online searches have told me that this chemo is likely going to be tougher overall than what I did last winter, at least in terms of side effects.  With only a 31% chance of true success (significant shrinkage of the tumors is the definition of success), and maybe twice that chance for success or stabilization, I'm still wondering if this is the best path.

I know that if I was making the decisions on my own, I would have chosen a different path.  There are at least 2 paths that I would have preferred to this one, but at times, I simply have to defer to the experts.  It doesn't make me happy, and I can't say I'm overly optimistic that this path is going to be successful.

Regretfully, I didn't feel up to skiing this past weekend.  I'm hoping that I'll be able to get out in 2 weeks, but I'm sure I won't ski this coming weekend, with my next infusion on Friday.

From a workout perspective, I had a very mixed week.  I did CrossFit on Tuesday, Wednesday and Thursday.  I went easy every single day.  The first 2 days were really tough, and I had to take some significant rest breaks.  By the third day, things were better.

On the weekend, I called in sick to my ski teaching job, but I managed to walk a lot over the weekend.  The warm weather we experienced made it easier to get in some walking, and we are supposed to have above average temperatures all week this week.  We will see mid to high 50s at least twice this week.

On the treatment side of things, I will have a chemo port installed on Thursday.  It's a minor surgical procedure that certainly leaves me with some residual pain for a week or so.  Friday, I have my next infusion.

And, right after that infusion, I have my first workout of the CrossFit Open.  I was torn about signing up for the Open this year.  I had been anticipating this for a couple years.  At age 55, which I hit last month, the movement standards become easier, and I wanted to try the Open my first year at age 55.  When I was scheduled for surgery, this wasn't possible, but the change in treatment plans allowed me to sign up.

But, 3 of the 5 weeks of the Open, I will go straight from chemo to the workout.  I'm allowed to train as hard as I feel up to training, but I'm not sure that it's smart to go so hard immediately after the chemo.  Plus, if we have cleans or front squats or burpees, or anything else where the chemo port is in the way of a movement, the workout this weekend will be especially challenging.

But, as I've said on FB, the chemo can taunt me, but it can't own me.  I have a life to live and I'm not just going to sit around and watch it go by.

I think it's safe to say that I'm at a point with this disease where it's not going to be cured.  This latest recurrence simply reduces those odds to near zero.  So, my focus now is finding some middle ground - treat what we can, treat it in a way that allows me to live my life as normally as possible, and evaluate every decision one at a time.  I wish that wasn't the point that I'm at, but I'm not going to live in denial.  I still have a lot of things I'd like to do with my life, and I'm not going to simply sit around and wait for this damned disease to win.  Yeah, it's going to be tough at times.  But, nobody every promised me that life would be easy.

Tuesday, February 14, 2017

New chemo regime - off to a rough start

My first chemo regime - known as AIM (Google result here) - was last winter.  It's a notoriously tough chemo, and to be honest, I did way better than expected.  Through 4 rounds, each lasting 4 days, I think I threw up only once or twice.  The fatigue was real, my taste buds were temporarily rendered impotent, and the "chemo brain" or "chemo fog" was real.  Plus, nausea.

So, when I started a new chemo regime, known as "gem/tax" (Google result here) this past Friday, I wasn't especially worried.  Yeah, my hair is going to fall out again.  Yeah, I need to get a chemo port installed to reduce damage to veins in my arms.  There will be nausea.  There will be fatigue.

I did have some vein pain during the infusion itself. but nothing too bad.  I even went straight from the hospital's infusion clinic to the gym and did a (modified) CrossFit workout.  It wasn't that bad.

By that night, I needed the anti-nausea medicine.  I woke up overnight on Friday night and needed some more.  But, during the day on Saturday, I went out for lunch with my wife, I did some grocery shopping, I spent hours tying flies, and despite the foggy thinking, I even got out the grill in the middle of winter and grilled some steaks for dinner.

Sunday was about the same.  I made it to the gym and walked for 75 minutes.  Organized some of my fly tying gear (with my ski season being severely affected by chemo, my brain seems to be focused on April and trout season).  Cooked a lot.  I made a nice shrimp risotto for dinner on Sunday night and it came out great and my stomach had no problems eating 2 helpings.

Then, I went to bed and things started to change.  I kept on waking up from weird dreams.  The brain fog seemed worse, and I was confused as I was trying to figure out the weird dreams I was having.  Then, the chills started.  In the middle of the night, I asked my wife for another blanket so I could try to get warm.

At this point in time, we were having a serious snowstorm and my wife was out of bed very early on Monday to run the snowblower, so we could get to work.  I felt terrible, and I felt even worse because I felt too bad to run the snowblower for her.  About 6:00 a.m., she finished and I asked my wife to take my temperature.  I was 100.5F - right at the threshold that my instructions tell me it's time to go the ER.

I knew I wasn't going to make it to work on Monday by this point in time, but I was hoping to avoid the expensive trip to the Emergency Room.  I asked my wife to wait at home until 8:00 a.m., so I could call my oncologist and get instructions on what to do.  I was told to go to the nearest emergency room, so that's what we did.

I honest felt like I was going to die.  It was like the worst flu ever, and I sat there, wondering how I could ever tolerate 7 more rounds of this chemo.  And yet, I know there are much worse chemos out there.  A friend who died last year from a glioblastoma spent a full day hugging the toilet every time she took her chemo meds.  Me?  I felt rough, nauseous, achy, disassociated, but no nausea.  I was ambulatory.

The ER took their time, I must admit.  It certainly felt like an emergency to me, but it didn't seem like one to the staff.  They failed in their first attempt to insert an IV.  I always hate when that happens.  I have pretty good veins from all the lifting I do, yet it seems like too many people miss with the IV.

They gave me some Tylenol for my fever.  Drew some blood.  Had me pee in a jar.  And then, I finally dozed off.  Around 11:00 a.m., they had seen most of my lab results and they were fine.  They had talked to my oncologist and she thought I was fine to be discharged.  They offered me the option of an IV antibiotic, but I saw no compelling reason to accept, and they discharged me.  They modified a few medications to help with the side effects as well.

I dozed most of the afternoon after my wife took me home.  I slept so well in the afternoon that I didn't really sleep much last night, but I'm feeling better today.  The chemo brain is still there, but I was able to drink some coffee and eat some breakfast today.

On Sunday night, my wife and I had made late reservations for Valentine's Day.  Nothing too crazy - just a hotel room near our offices (2 commute trips removed from our lives) and dinner at one of our favorite Burlington restaurants (Church and Main).

Yesterday, I was ready to cancel all of it.  Today, I think I'll make it.  Dinner might be cheap because my appetite isn't really there, but it will be nice to spend the evening with my wife.  Plus, she can drink the Champagne and I can drive.

It's only 10 days until my next chemo session.  I can hardly wait.

Thursday, February 9, 2017

And now for something completely different

Yesterday, I got an unexpected phone call from my surgical oncologist at Sloan Kettering.  He and a radiologist were doing a final review of my CT scan before my surgery this coming Monday, and regretfully, they discovered two small new tumors that were missed last week.

This changes everything.

After the AIM chemo last winter and surgery in March, the hope was that the nature of my liposarcoma would change.  Instead of being dedifferentiated, it was hoped that recurrences would be rare and would be mostly well differentiated, which is a less dangerous subtype.

Then, we found a dedifferentiated tumor in November.  It responded well to high dose radiation, and the hope was this was a "one off", an anomaly that could be irradiated, removed, and not a sign of things to come.

But, the two new tumors have changed that thinking.  The surgeon has occasionally gone into surgery and found a web of tens or hundreds of tiny tumors.  Surgery cannot really work in this case, and systemic treatment is better.  The surgeon doesn't have any reason to suspect that I have a huge number of mini tumors, but the additional 2 tumors have indicated to him that surgery alone isn't the answer.  We need to knock this down at the systemic level, which means chemo.

There were a number of chemo options considered.  First is a CDK4 drug (this targets a common genetic mutation found in liposarcoma.  The 2 most commonly mutated genes are CDK4 and MDM2, and so far, MDM2 targeted drugs haven't panned out) still in clinical trials at Sloan Kettering.

Next is a common pair of chemo drugs known simply as gem/tax.  This is often used for pancreatic cancer, and for prostate cancer as well.  But, it has a success rate of about 31% against dedifferentiated liposarcoma, where success is defined as a shrinkage of tumors by at least 50%.  I had about the same chance of success with AIM and it worked, so perhaps this would work as well.

There is another clinical trial that was an option, but they are not accepting new patients right now.

Votrient was an option.  And, more AIM was also a consideration, given that it has worked for me in the past.  But, it's a tough chemo and it's tough on the patient's heart, so the thought was to hold this magic bullet for down the road, if needed.  There are a few other chemo drugs out there, but they tend to be tertiary in nature - used when all other options are gone, and the goal is simply to extend life when the disease has become incurable or uncontrollable.  We aren't there yet, so those drugs will have to wait their turn, and I hope to never see them.

After my doctors talked yesterday, they came up with this plan:

  • Cancel the surgery for now.
  • Start me on gem/tax, bi-weekly
  • After 8 weeks (4 rounds), do a CT scan
  • If it's working, do 4 more rounds
  • If it's not working, switch to the CDK4 trial at Sloan Kettering
  • After the tumors have responded to one of the chemo options, perform the surgery to remove the tumors


One thing that I don't like about this is pushing my surgery to the summer.  I really treasure my time outside in the summer - hiking, biking, fishing, walking the dog, etc.  So, to be in surgery and then recovery from surgery in mid-summer won't be fun.  But, I don't really have a choice right now.

So, no surgery for now.  And, I have to hope I can defy the odds with a second chemo cocktail.

Chemo starts tomorrow.  There's no time to fool around with this stuff.

Thursday, February 2, 2017

Latest Medical Update

My wife and I spent Tuesday at Sloan Kettering in NYC.  Most trips to NYC are somewhat fun, at least to some extent.  We normally manage at least a decent meal, or a nice adult beverage somewhere, but no such luck this time.

Unlike most trips, we had a later start to this day, so we were on the 7:00 a.m. train out of Albany (we stayed at a nearby hotel the night before) rather than the 5:00 a.m. train.  We were in the city by 9:30 and we walked quickly to hospital - maybe a 35 minute walk.  From there, it was straight into CT scan prep - drinking the oral contrast liquid.  After half an hour of that, they took me for the scan, which also included an IV contrast.  I will never get used to the warm feeling that the contrast creates.  It's focused at the back of my throat and also my butt.  It almost feels like I've peed in my pants, but that hasn't actually happened yet.

Next, I was scheduled for some lab work while the CT scan was being read.  But, there was some confusion here.  The doctor who had ordered the labs was a medical oncologist who I've only spoken to briefly, and they couldn't even figure out what labs he wanted.  Eventually, they decided to cancel those orders, so I spent the next 90 minutes waiting to see my surgical oncologist.

The first statement he said was that the tumor that was irradiated last month was exactly the same size as when scanned in November.  That made my heart sink a bit, but he explained that this was good.  The tumor density had changed, and the words necrosis and necrotic were in the report.  In summary, the tumor was essentially "killed" by the radiation.  It didn't shrink, but it also didn't grow.

However, it's not safe to leave the mostly dead tumor in place.  If there are viable cells left in the tumor, they will eventually find a way to escape and spread the disease, so the tumor has to come out.

The surgeon explained how he would do the surgery, what the incision would look like, what the risks were (bleeding from the inferior vena cava - a major vein) if he has problems prying the tumor away from the vein.  He said he will need a few units of blood in the OR in case that scenario happens, but he didn't seem overly concerned by it.  He said it's a 3-4 hour procedure, and part of that time is simply getting to the tumor.  They have to make the incisions, get to the liver, essentially flip the liver up and over to get behind it, and then extricate the tumor.

He does think this surgery will be less severe overall than my last surgery, where he had planned to resect a couple organs and cut out a large part of the psoas major muscle.  I will spend 5-7 days in the hospital this time, vs. 7 last time.  The surgery is still an invasive surgery under general anesthesia, and I will be intubated and have a catheter inserted.  So, it's non-trivial, but I'm getting used to these by now.

This time, I can go home for a week after discharge rather than having to stay in the city the entire time.  I will simply have to return to NYC on the 28th to get the staples removed and to get the final pathology report.  Mostly, I will be concerned with the margins on the final report - did they find any cancer cells right at the edge of the tumor, indicating that some might have been left behind.

After the meeting with the surgeon, I was supposed to follow up with the radiation oncologist to discuss my December radiation.  But, they also need to do pre-op testing - lab work, EKG, etc.  Normally, they do a chest X-ray, but after a full body CT scan earlier in the day, an X-ray was unnecessary.  So, we cancelled the appointment with the radiation oncologist, and focused on pre-op testing.

I had to change our reservations to a later train while waiting for the lab work to be done (they took 9 tubes of blood!)  And, we still had to take a cab rather than walk to make it to our train on time.  There was no time at all to even have one drink at the American Whiskey Bar - one of our favorite NYC watering holes.  Next time!

So, Tuesday's news really couldn't have been any better.  To be honest, in the back of my mind I guess I was secretly hoping that the tumor would just be gone - vaporized.  But, there was no real chance of that.

My surgeon is one of the best in the world for this disease and he seems quite optimistic.  He was thrilled that nothing new showed up in the past 3 months.

Now, I'm working on the logistics of travel for the trip.  This is always a challenge, working with train schedules, social workers at Sloan Kettering to help with lodging, and just the overall timing of things.  But, I should get that wrapped up today or tomorrow.

So, on to the next round.

Monday, January 30, 2017

Decent string of workouts and next visit to Sloan Kettering

The side effects from the radiation seem to be mostly gone.  I have gotten sick twice this month, although neither was that severe.  Each illness cost me a couple days of training or skiing, plus one (total) day of work, but neither was horrible.  I did get a flu shot this year plus a pneumovax, so I don't think either illness was the flu.  I'm not sure if the illnesses were related to the radiation or not, but I'm guessing they were.

My typical goal for CrossFit is to average a little more than 3 classes per week, year round.  So, that means some weeks of 4 or 5 days, because some weeks will be inevitably lower than that.  Regretfully, coming back from the radiation has been a bit slow, and I have not made it more than 3 times this entire month.  With my workout tonight, I will be at 12 CF workouts for the month - a couple below my goal, but not too bad.  Part of the problem was intense soreness as I returned after the radiation.  There were multiple weeks where 1 or 2 workouts early in the week left me too sore to train for the rest of the week.  That is simply not normal for me, and it had to have been caused by the radiation.

As for training in February, who knows?  Tomorrow, I head to Sloan Kettering in NYC for a series of tests.  The key test is a CT scan to look at how effective my December radiation treatments were.  I can't say that I'm thrilled about this trip, because the best possible outcome means another surgery in the next month or so.

If the radiation was not effective, or if any new lesions show up, I have no idea what will happen.  I honestly can't even let myself think about it.  This is the first trip that I'm making to Sloan Kettering where I've worried about being given the dreaded "There's nothing more we can do" speech.  I know that's unlikely, at least for now, but if the radiation failed or a handful of new lesions have shown up, I'm not sure what the answer will be.

Each day, as I get closer to this scan, is more and more difficult.  I am having a hard time concentrating on anything, to be honest.  There are just too many "what if" questions out there.

So, for now, let's just assume that things go well.  I will probably have surgery in 2-3 weeks.  And, with some luck, I'll be recovered from the surgery in time to still get in some skiing later this season.  Hopefully, I'll be stronger on the opening day of trout season than I was last year.  Last year, I fished for about 3 hours each on the first two days of the season.  That was all my body could handle.

Surgery last year was in early March.  If I have the surgery in early to mid February, I should be more recovered in April than I was last year.

I am certainly preparing for trout season as if I'll be healthy enough to fish.  With surgery looming, I'm already thinking less and less about skiing, and thinking ahead to recovery from the surgery and then trout season.  Every step of the way, I need some kind of incentive to keep me going through the next treatment.  Otherwise, this whole process would be unbearable.

The other reason that I'm thinking ahead is that I'm spending my second consecutive winter cold all the time.  I simply cannot get warm or stay warm.  On 40F days, I'm skiing in the clothes I would normally wear for a 15F day.  On a 15F day, I am wearing mittens rather than gloves, extra base layers, and I still cannot stay warm.  I know that chemo messed with my tolerance to cold last winter.  I'm unsure if that is a permanent effect, or if I'm having a similar reaction to the radiation.  Either way, it's no fun being cold all the time, so I am thinking ahead to warmer days already.  We haven't even hit the typical coldest weeks of the year, and I'm looking ahead to warmer days.  I never thought I'd be the person saying that.