Wednesday, July 4, 2018

On to round 3

It seemed to take forever, but my white blood cell counts finally rebounded enough that we could finish round 2 of the chemo.  It's supposed to be a 21 day cycle, with treatments on days 1 and 8, but my day 8 treatment didn't happen until day 20 in the second round.

Even then, my white blood cell counts, although high enough to give me the treatment, were still less than 10% of normal.  So, the third cycle was delayed by an additional week and it's scheduled to start on Friday.

The second round ended up taking a lot out of me.  I'm going to see if there's any way to use Neulasta or Neupogen to speed along my immune system recovery in this next round.  I don't want all of the rounds stretching out to 4 weeks.

By adding a week to the process, it now means that all of the concerts I have tickets for in July happen on the same weekend as Day 1 of the chemo cycle.  This is when I feel the worst from the chemo, although the "down period" from the Day 1 treatment lasted a full 10 days in this past round.  I also went 22 days without going to the gym - something I really hate.  In July, I'm hopeful that I'll feel OK at all the concerts (4 total) that I'm going to see.  My biggest concern is three straight days of shows at the end of the month - a Thursday night (we will likely do chemo that day), and then Friday and Saturday in Camden, NJ.

So, on Friday, I will talk to the doctor about options to keep my immune system functioning at its best as we start this next round.

I have to admit that work has really been a challenge, and I'm guessing it showed to some extent.  I met with my boss yesterday, and she is going to temporarily take a few projects off my plate.  She warned me that she still had high expectations for my work, but she wanted to reduce my stress level a little bit as I go through the rest of chemo.

In some ways, I'm thrilled.  I have felt like I'm drowning at work and I can never catch up.  I'm still going to have a lot to do, but it's going to be more of what I was hired to do and less of the project work that was outside my core skill set.

On the other hand, I worry a bit that the work was removed from my plate because I wasn't doing it well enough.  Anyone who knows me knows that I'm a perfectionist about the work I do, and I'm my own harshest critic.  Although, and I say this with no ill will at all, my current boss is also a tough critic and she has high expectations.  I'm hopeful that the work that was removed from my plate was removed for the reasons stated, and not because I was doing a poor job at some of it.  But I'll probably never know for sure.

My primary goal now is to excel at the core work I was hired to do, and then, in a few months, I'll hopefully be feeling better and I'll ask to be re-assigned some of the project work that was taken away earlier this week.

In the interim, life is simple.  Work hard and do a good job at work.  Reduce my stress levels a bit and get my treatments done.  Try to have fun with my concerts, the gym, and some fly fishing.  And, hope that the chemo is doing its job so that I can enter a period of no treatments later this summer.  Or, at the very least, hope that I'll continue with just one of the current chemo agents - the one with very few side effects.

And, I have to hope that my immune system can handle the treatments.  Apparently, every time I have had a cytotoxic chemo in the past, it has done a little bit of damage to my bone marrow.  Over time, the bone marrow simply doesn't work as well after the beatings it's taken, and the risk of neutropenia goes up with repeated treatments.  Hopefully, we can find a way to avoid that issue in this next round and in the future.  The last thing I need is to be hospitalized with some sort of opportunistic infection.  I trust that my docs are doing everything that they can for me, but I'd prefer to see them a little bit less often, if possible.  Being hospitalized for an infection would mean seeing them more, not less.

Friday, June 15, 2018

Climbing out of the abyss

I started my second cycle of chemo last Friday.  Regretfully, this round hit me harder than the first time through, and it's been a tough week.  Part of the problem was that I had concert tickets for this past Monday night, and on a night where I should have been resting, I was at SPAC in Saratoga, NY seeing Dead and Company.

Ever since then, I've been playing catch-up on my sleep, and struggling to get by at work.  But, day by day, things have been getting better.  Today is the first day I've even considered going to the gym in the past week, although I'm guessing I'm going to opt for rest instead.

I was due for another infusion today - the less toxic drug only.  But, somehow the hospital screwed up and didn't get the drug in stock, so they had to delay things until Monday.  That means I don't get the weekend to rest and recover right after the chemo.  But, because it's the less toxic drug, I'm hoping I'll feel pretty decent next week, even with the infusion on Monday rather than Friday.

I did talk to the hospital a few times this week.  I've honestly felt so bad that I barely made it to work a few days this week.  I was hoping there was something that could be done to alleviate the fatigue and nausea.  They couldn't really help for this round, but they have some ideas going forward.

Today, the hospital finally got back to me on those issues, and they want me to really focus on taking more of a steroid next round, plus more medical marijuana.  I've been nauseated, unable to eat, and not sleeping well despite being tired.  My doctor is convinced that the medical MJ will make a big difference if I can just get that down the next time around.  So, we have a plan for the next round.  This is the first time ever that my doctor has actively advised using marijuana.  She never flinches when it's time to sign for my medical MJ card, but she's never really advocated for its use either.  This time, she is actively suggesting that I use it more.  So, I will.

Hopefully, by not having chemo today, I'll feel better this weekend.  It's supposed to be a beautiful weekend, and I'm hoping my wife and I will get out and do some fishing.  Plus, we have our normal weekend trip to the farmers' market and some lawn work to do.

Other than that, life moves on.  I'm just trying to have as much fun as possible, take care of my body, and make sure I can handle the demands of work.  It's been a tough week, but I made it through.  Hopefully the next two weeks will be much better.

Here's a link to an interesting article that I read this week.  While the author has a completely different illness than I have, I really identified with the article.

Thursday, June 7, 2018

First chemo cycle done

Each of my four scheduled chemo cycles lasts 21 days.  Today is day number 21 of the first cycle, which means that I start the next cycle tomorrow.

Just as with all the other chemo I've done in the past, it seems that just as you start to feel almost human again, it's time to start all over again.

On Monday and Tuesday of this week, I had the best workouts I've had since the chemo started.  For the most part, my strength, while reduced, hasn't been too bad.  It's been my aerobic capacity that's taken a big hit.  I'm not anemic, but I just seem to have no aerobic capacity.  On Monday and Tuesday, I finally felt like I could push a bit.

On Monday night, I ate what I would consider my first truly normal dinner since the chemo started.  My appetite is finally returning.  Yesterday was my wife's birthday (last year, we had dinner at db Bistro Moderne in NYC on her birthday, so this year's local restaurant was a bit of a letdown), and I felt good enough to take her out for dinner to celebrate.  I even had a martini - my first alcoholic beverage since the chemo started.  But, again, I didn't eat very much and I was in bed by 9:15.  Not my best effort for my wife's birthday, but in her infinite patience for my medical situation, she said she was just happy to have the whole family together for dinner.

So, tonight I'll get in one more CrossFit workout before the next round begins.

And then tomorrow morning, it all starts again.  I am hopeful that everything goes better at the hospital this time.  Last time around, they seemed a bit confused by all of the drugs, any potential drug-drug interactions, my sensitivity to dexamethasone (I need to have it infused over an hour instead of the normal 10-15 minutes), etc.  I think that my cancer is so rare that the nurses had never even given one of the meds before.  It is a fairly new drug, only given to liposarcoma patients at a particular stage in the disease, and usually in conjunction with another particular drug.  They were very concerned about the possibility of allergic reactions with that drug, hence the need for the dexamethasone and also Benadryl.  All in all, I didn't get out of the infusion clinic until after 7:00 p.m. last time around.

Tomorrow, we are starting earlier and hoping to finish much earlier.  I'm sure that none of the nurses wanted to be in the clinic with me that late on a Friday last time around.  I'm sure they had better things to be doing on a Friday evening.

This weekend, I'm scheduled to fish in a fly fishing tournament.  I'm a bit skeptical that I'll feel up to it, but as long as I'm taking dexamethasone, which helps with my energy levels in the days after the infusion, I have a chance that I'll make it out.

I have to admit that I've been sleeping in most weekends, and if I'm going to fish the tournament, I would want to be on water close to 5:00 a.m. on Saturday morning.  So, we will see if I can do it or not.  I can always start (if I can get out of bed) and then bail if necessary.

I'm going to load up on Ensure and ice cream this weekend.  In the first chemo round, my weight dropped almost 10 pounds in the first week after the infusion, although it has stabilized in the last two weeks.  I always seem be carrying some extra pounds, but I really want to limit how much weight I lose.  I certainly don't want to be losing muscle mass, which I think is important for me to remain active through the treatments.

So, no exciting updates.  The first round was tough - tougher than I expected, to be honest.  Last time I had doxorubicin, each round got worse than the one before it.  I'm hoping that doesn't happen this time around.  I've been able to work every scheduled work day since treatment started.  I had one day where I was really exhausted, but I managed to make it to work.  I've already lost my hair, so that won't change this next time around.

One round down, and three to go.

Thanks to all of you who read this blog and send me words of encouragement.  It's very much appreciated.  When I started this blog about a decade ago, it was all about ultra-running and skiing.  i certainly never imagined that it would end up being a cancer blog.  But, I imagine that most cancer patients never really expected their diagnosis right up until the moment it happened.  None of us are immune.  Eventually, whether through a friend or a family member or even yourself, cancer will touch your life.  Let's all hope that science eventually finds a cure for the plethora of diseases that we collectively call cancer.  Nobody should have to go through the process of being poisoned right up to the limits of what the body can handle, or radiated so extensively that secondary cancers are spawned.

I sometimes think of the movie Star Trek IV: The Voyage Home.  The crew of the Enterprise finds itself in a Bay are hospital in the 1980s.  Dr. McCoy encounters a patient on dialysis.  His response is "What is this, the Dark Ages?"  He gives the woman a pill, and if I recall correctly, her body generates a new kidney.  The interns are shocked at what they find.

Yes, we are a long way from those kind of medical solutions.  But, in many ways, we are living in the Dark Ages, and I'd rather be a patient in an era where medicine guesses less and actually knows how to solve problems.  Who knows how many years/decades/centuries might pass before we reach that point?

Tuesday, May 22, 2018

Chemo just plain sucks

On the way in to work this morning, I heard the J. Geils Band's song "Love Stinks".  All I could think as I heard those words sung over and over was "Chemo sucks".

In some ways, maybe I could even call it luck, it's been a couple years since I've been on a truly cytotoxic chemo regimen.  I did gemcitabine and taxotere about 15 months ago, but the side effects there are just nothing compared to doxorubicin, which is what I'm doing now.

I think I was in the infusion clinic for close to 7 hours last Friday.  First, I had lab-work done.  Then, met with my doctor.  Then, the endless infusions of medications.  Benadryl.  One to protect my heart from the doxorubicin.  Then, two different long acting anti-nausea meds.  Then, dexamethasone, which I need to take slowly due to a sensitivity to the that one.  I basically passed out the first time I had IV dex, and they've since discovered that I'm OK if infused over an hour rather than 10-15 minutes.  And then finally, one chemo drug and then another.

I spent most of the weekend flat on my back on the couch, with no appetite at all.  I managed to get down a milk shake each day as my only source of calories, plus I tried to get plenty of fluids.  I wanted to get out and go fly fishing but it just wasn't in the cards.

I have three different medications for nausea at my disposal - Zofran, compazine and lorazepam.  Of those three drugs, two are known to cause hiccups in some people, while the third, compazine, is sometimes used to try to alleviate hiccups.  Yet, I seem to be getting hours-long hiccup attacks (every six seconds for hours at a time) while on the compazine, which seems completely backwards to me.  My last two nights of sleep have been interrupted by hours of hiccups.

I'm still feeling pretty rough mentally.  If you've never heard to term "chemo brain", let me assure you that it's a real phenomenon, and working in IT, it makes the work day difficult.  I have two meds to help with the fatigue and chemo brain and they help, but I'm just not quite my normal sharp self.

I did have an appointment with a specialist on Monday due to persistent concerns about my one remaining kidney.  I lost a kidney when my original liposarcoma tumor was removed, and about 15 months ago, my kidney health readings (a test known as eGFR) started to decline.  The number should ideally be about 90, although with one lost kidney, it's rare to see numbers above 70.  But, mine have been ranging from 36-43 for the past 15 months.  Higher scores are better with this lab test, as it's an estimate of how fast your body can excrete excess creatinine in the blood.

Amazingly, last Friday, before chemo started, my eGFR was at 56 - the highest it's been in those last 15 months.  Yesterday, I saw a nephrologist.  He had mapped my eGFR scores against my various cancer drugs for the past 15 months.  What he saw was a pattern of two drugs negatively influencing my kidney function.  If he was right, he said my kidney function should be rebounding, which is exactly what we'd seen the previous Friday.  So, for now, that is one less thing to worry about.  He said he thinks I'm fine and I don't need to return to see him unless the scores become depressed again.

I did manage to make it to the gym last night.  I had to scale the workout somewhat, mostly to keep nausea at bay, but I was able to do the workout at about 75% of my normal capacity.  I was able to eat some solid food when I got home last night.

Today, my thought patterns are still a little bit scrambled.  It's like I'm living underwater - everything just happens slowly and I can't seem to operate at full speed.  But, it will get better day after day, I should soon be back to normal.

This coming Friday, I still have chemo, but not the doxorubicin.  Hopefully, I'll feel a lot better this coming weekend than I felt last weekend.  And maybe, no hiccup attacks.

If the weather holds, maybe I'll even get the lawn mowed and get in some fly fishing over the holiday weekend.

Tuesday, May 8, 2018

A Change in Direction

I was at Sloan Kettering this past Tuesday.  Regretfully, a CT scan showed that the two tiny tumors in my abdomen have grown in the past three months.  The verdict was that the growth is statistically significant, and that the Ibrance is no longer working.  I'd been on Ibrance for six months, and it has a median progression free survival period of 18 weeks.  So, I got about that much time out of the medication before the tumors resumed their growth.

I did complain to the doctors that my pain level has increased in the past few weeks.  They believe it's because one of the tumors, which is sitting against my rear rib-cage, is probably pushing on a nerve.  They suggested two options to deal with the pain, and left it up to my primary care provider and I to decide.

I sent an email to my PCP and she immediately agreed with my preferred option.  The change has worked well and the pain is not bothering me as much as it had the few previous weeks.

The doctors at Sloan Kettering described this entire ordeal as a marathon.  They said that I am literally not sick right now.  I'm in good health, I feel good, I'm training reasonably well, and the disease is not impeding my life at all.  At the same time, it's important to prevent those two tumors from growing further.

The tumors are so small that surgery was not the recommended option.  Instead, they want to try a 12 week run of chemotherapy.  This time, it will be a combo of Doxorubicin (the first chemo agent I had, and I responded very well to it) combined with Lartruvo.  Lartruvo is in a category of drugs known as biologics, and when paired with Doxorubicin, it seems to amplify the effects of that drug.  Patients who take the combination of the two drugs statistically lived twice as long after treatment as though who got Doxorubicin without the Lartruvo.

The doctors described the current state of my disease as being in the early stages of a marathon.  Yes, we've used up one magic bullet with Ibrance.  After four more rounds of Doxorubicin, I will be at my lifetime limit for that drug.  But, there are still many more options out there, plus I'm sure we will do surgery again in the future.

I am hopeful that the combo of the two drugs will substantially shrink, or perhaps kill, the two small tumors that I have.  Doxorubicin worked very well last time, and if Lartruvo makes it work even better, I should experience significant shrinkage in two tumors that are already small.  If that happens, I will hopefully enter a period of time where I won't have any treatments at all.  Also, shrinking the tumor in the back will hopefully reduce my pain level.

So, while this was a setback, it's not a huge issue.  Yes, it would have been nice to be one of the lucky few for whom Ibrance works a long time.  But, that didn't happen.   At the same time, my tumor load is small and I'm fairly healthy.

On the downside, Doxorubicin is a nasty true cytotoxic chemo.  My hair will fall out.  I will be nauseous and tired.

On top of this, I started a new job in February, and I had to tell my employers about the cancer because of the chemo.  So far, I've been overwhelmed by the support I've gotten at work, the response to my plan to minimize the impact on work (I'm going to do chemo on Fridays so that I can rest on the weekends, maybe work from home on Mondays, and otherwise hopefully feel pretty good throughout the process), and just the good will I've felt from the senior management in the company.

I was very concerned about telling people here, considering that I'm still the new guy, but I think that things are going to be OK.  My biggest concern is that I'll be be too tired on the weekends to do much fly fishing.  Our season is off to a terrible start, with a cold April, rivers running high, and I haven't fished even once yet.  The forecast for this coming Saturday is looking dismal and I might not get out again this weekend.  But, I'll get out pretty soon.

So, on to a new chapter.  I'm not thrilled at taking this drug again, but it's what I need to do.  So, I'll muddle through.  Life goes on.

On the fun side of life, concert season is starting.  I saw They Might Be Giants three weeks ago.  I saw Peter Hook and the Light two weekends ago.  And, next week, I'll be seeing The Editors, a band I've wanted to see for a long time.

After that, I still have tickets for five other shows through the summer and the fall.  Unlike last summer, when I was recovering from surgery, I'm hoping to feel better at the shows this summer.  I'll be tired, but I won't be recovering from surgery.

And, I'll be saving money on haircuts over the next six or more months.

Sunday, April 22, 2018

Too busy to update?

I've been at my new job for just over 2 months.  To be honest, it's easily the most intense job I've ever had in my life.  My team is short on staff, and due to some budget issues, I'm not allowed to hire to fill the primary opening I have.  So, I'm functioning as my team's project manager as well as the Director of Technology for the company.

A typical day is probably half meetings.  Weekend and evening work is common.  Missing the gym because I have to work late has happened way too often.  Most days, I'm lucky if I can find five minutes to get a little bit of lunch.  There are some things about the job that I really enjoy, but the net effect is that it's simply overwhelming and I feel like I can never catch up.

Part of this is to be expected.  I went from a position where I was the company expert in almost every facet of the operation.  Now, I've got a steep learning curve, a huge amount of work, and it's very difficult to keep up.  No matter how much I work, I feel like I should be working more.

I guess this kind of job is why I make the salary that I make, but it's been a challenge so far.  And, I wish I could say that it's been fun to date, but that would simply be untrue.

I am hopeful that things will settle down over time.  I'll get better at the job, our position with our primary customer will improve, and hopefully we'll be able to staff back up to the level that we need.  I know my department isn't the only department that's understaffed, and everyone is scrambling to keep up.

Such is life, I suppose.

My next appointment at Sloan Kettering is in 9 days.  I've been having worse pain recently in the area of the three liposarcoma surgeries that I've already had, and that is worrying.  Today, I skipped skiing because of the pain and the need to take pain meds.  I simply don't want to ski with opiates in my system; the risk of injury is just too high, and I'm still recovering from a skiing injury and surgery earlier in the winter.

Trout season started last weekend and I was entered in an opening weekend fly fishing tournament.  Regretfully, due to late winter weather, a lack of snow tires (I changed them at a reasonable time, but winter just kept coming), and generally miserable conditions, I opted not to fish in the tournament.  I joke at times that I'll never catch a fish in this tournament.  But, the past 3 years, my fishing time has been decreasing due to illness (and now weather), and I'm starting to wonder if I should just not sign up next year.  Early season fishing in VT simply isn't fun at times, and I fish to have fun.  I'm not someone who enjoys spending hours at a time on the water with little chance of catching anything.  So, perhaps this tournament is something that I should reconsider in the future.

Not much else is going on.  I'm trying my best to get to the gym as often as possible.  But, between work and dealing with pain, this has been challenging.  If I'm completely honest, work is driving everything right now.  I feel like I should be working every possible second, yet I truly don't want a job that rules my life that way.

Hopefully, this will improve over time, and I'll feel more comfortable not working the evenings and weekends.

I need to get out fishing.  I have concert tickets for a number of shows this spring and summer and I'm looking forward to them.  I still want to do some skiing.  And yet, I'm constantly haunted by the belief that I should be working.

I worked today for a while, but did manage to sneak out for a run to preserve my sanity.

I'd be lying if I said I was truly enjoying life right now, and that's just not acceptable.

Friday, March 2, 2018

I missed all of February

I managed to go an entire calendar month without a post.  Admittedly, I've been swamped for the past month, and I've had no time to even consider posting.  Even now, my time is limited, so this will be a short post, I think.

I think I mentioned in a previous post that my employer for the past decade or so was in trouble.  We closed our doors on February 2nd.  I had been searching seriously for a job for the past year and to be honest, was wondering if I'd ever find another job at the same level I'd been at.

I had been interviewing since early December with a local healthcare IT company.  But, the process just kept dragging out and I wasn't sure if I'd ever get an offer.  However, on the afternoon of 2/2, my last day at my old job, I got a verbal offer from this new company, and I'm now wrapping up my 3rd week as the Director of Technology for the new company.  It's an interesting job compared to previous positions I've held.

I really have no hands-on technical work as part of my job.  I'm truly a Director, with employees to manage, contracts to negotiate, and customers to satisfy.  Being a step removed from the technical work is a change for me, but I'm adapting.  Stuff that I would do on my own in the past I'm now supposed to assign to others.  But, it's working.  The new job is challenging - no doubt about that.  The organization has had some recent turmoil and lots of turnover.  My staff is young and two people are still very much in a learning phase, along with me.  I'm still down a person due to recent turnover, so I'll likely be hiring someone in the near future as well.

The biggest parts of the job seem to be managing vendor contracts and customer relationships.  This is stuff that I enjoy doing, so I think the job is going to work out well in the end, although my learning curve remains steep.

I took a week off between my old job and my new job, and my son and I did a road trip to TN to pick up a new Rhodesian Ridgeback puppy.  Her name is Ruby and she is just the sweetest puppy I could have imagined.  The biggest issue we've had is that our older dog isn't fond of the puppy and her lack of social skills, so their relationship remains tenuous.  But, it seems to get better day by day.  We discovered yesterday that if each of them has a new marrow bone to chew on, they get so focused on the bone that they have no time to growl or bark at each other.

Ski season continues to limp along.  At the beginning of the Presidents' Day holiday week, Sugarbush was 100% open and the skiing was amazing.  And then, it got warm.  In one week, we lost a lot of snow and every natural snow trail is now closed.  This past week has been warm again, and although it's snowing lightly now, it won't be enough to replace what we've lost this week.

Two weekends ago, I took a hard fall while working and broke my thumb on some advanced terrain.  So, I'm now navigating the Workman's Compensation system, as I need surgery on my thumb to reconnect the UCL to my thumb.  I'm scheduled for surgery a week from Monday. 

I hope the surgery doesn't get delayed.  The recovery time is about six weeks, and my surgery will be 4.5 weeks before trout season opens.  It's my right thumb that's messed up, and I need it healthy to cast on opening weekend.  Plus, I need it healthy to get back to lifting consistently.

I've been able to do some CrossFit since I hurt the thumb, but between the new job, tiredness caused by my cancer medication, and the injury, it's been easy to just take some days off.  I really need to get back to the gym at least 3x per week.  The last two weeks, it's been 2x, and that's just not enough time to stay fit.

The working part of ski season will be over in 16 days.  Well, I'll have to write performance reviews after that day, but I won't be working on skis any more.  Most seasons, I'd use the next month after work to get in some free skiing with my wife, but my thumb may dictate some changes to those plans for this year.

Hopefully, the surgery will happen as scheduled and I'll have a speedy recovery and get back to skiing and fishing very quickly.

That's pretty much it.  New job.  New puppy.  Broken thumb.  I guess I could have used this last line as my whole post.