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.

Monday, January 29, 2018

There's No Hope Road

This is my last week at my current job.  Most other employees of the company are already gone.  I'm supporting our production systems through the end of the month and then shutting everything down by the end of the week.

I've been at my job for 11+ years in one capacity or another.  I started by doing some consulting work for the company while they were still in the tail end of a research project.  Then, I became a part time employee after the consulting contract ended.  When the company got their first round of venture capital, they hired me as the IT Director.  Four years ago, I became the Chief Technology Officer.

Looking back, I can see all kinds of things we should have done differently.  I should have fought to use a higher percentage of our funding for product development.  I could have done a few architectural things differently.  We simply needed to create more products and then find a way to sell the more complete product set.

In many ways, until the past year or so, we never had any competitors in the market.  But, we were a niche company, providing services to treat a small handful of chronic diseases, rather than a more full spectrum company that encompassed all of chronic care.  In some ways, we were too specialized and deep for our own good.

If a healthcare organization bought our product and used it properly, they saw more lab revenue, more primary care revenue, and healthier patients.  But, they also saw reduced emergency department revenue and reduced inpatient revenue.  The net effect was that fee-for-service organizations were presented with a product that would make their patients healthier but at the expense of lost profit on the bottom line.

Our fee for service model in the US is so perverted that more than one medical director basically told us that our product was a no-brainer, and that they should use it, but that the CEO would never go for a product that had a negative net effect on revenue.

We tried to sell this product through the beginnings of the ACA, when people were more focused on EHR implementations.  Then, those same organizations were more focused on something called meaningful use.  And, after years of being in business, and with the advent of Accountable Care Organizations (ACOs), we thought we finally had a window to succeed.  We integrated our product with two of the larger EHR systems on the market.

And yet, we never got any traction.  We have tried ceaselessly to find a way into at-risk organizations.  The customers that we have love our products.  But, we haven't sold the product to a new customer in years right now.  We haven't had a full-time salesperson in years.  We haven't had a full time CEO in years.  We managed to limp along for longer than we might have deserved, but finally, the financials simply made no more sense.  We are out of cash.

I will fail to see a large amount of money that the company owes me.  I'm not surprised, to be honest.  Others are going to lose even more money.

I feel like I've poured my heart and soul into this company for the better part of a decade, and now it's just over.  To say it's bittersweet is an understatement.  We probably made it further than we had any business making it, but it wasn't enough.

It looks like I'm going to land on my feet.  I will hopefully have a job offer in the next 24-48 hours, and I won't need to collect unemployment at all.  At my age, finding a new job has been extremely difficult, to be honest.  Age discrimination in IT is a very real thing, and I've dealt with it a lot over the past year or so.  Assuming the job offer I'm expecting does come through, it will be because I'm capable of doing the new job, but also because of my prior connections to people at the new organization - another case of who you know rather than just what you know.

I'm excited about the future and new opportunities.  But, after investing so much blood, sweat and tears here, it's difficult to see it all go away.

It's also been a good learning experience.  I took a position without benefits at a marginal salary vs. my job title and skills/experience.  I did it because I truly believed in what the company was doing, and I still believe that we were doing the right thing.  But, in the end, it's all about money, and no one rewarded me for "doing the right thing".  Next time, I'll be more careful.  The whole situation reminds me of the lyrics to a song called Hope Road by Anne Clark.  Here are the lyrics at the end of that song:

"Next time I'll be more cautions
Next time I Won't be fooled
It's another of those basic things
You're never taught at school
Let this be a warning
As you wander through the world
It makes no difference who you are
Be you boy or be you girl
Be very , very careful
When people seems so nice
It's not how that it's expensive
Later on you pay the price
There's no Hope Road"

Friday, January 26, 2018

Health Update

I was at Sloan Kettering on Tuesday of this week.  I had a CT scan that showed complete stability - no growth of the one tumor found last fall.  We will continue to do scans quarterly, but for right now, this is great news.

Overall, the expensive drug I'm taking, Ibrance, has a median progression free survival of about 18 weeks.  That means that half of the patients have seen no progression at 18 weeks and half of them have either died or seen progression.

I'm at about the 14 week mark and no progression has occurred.  There are some patients who have been followed for years with no progression.  The best predictor of long term stability is actually the first scan.  If the drug works right from the start, the odds that it will work longer term go up tremendously.  So, this is certainly good news.

The day before we left for NYC, I was informed that my last day at my current job will be next Friday, 2/2.  I knew the end was coming, but I honestly didn't expect it so soon.  In some ways, I appreciate that the company is shutting down sooner.  They are doing this while they still have the money to pay the employees for all the hours they've worked and vacation time they've accrued.  In the end, I will leave this job with the company owing me tens of thousands of dollars but I won't be the only one.  And, they made a good faith effort to pay us some of our deferred compensation.

While we were in NYC, I got a phone call from an organization I've been interviewing with for the past 6 weeks.  I've been selected as the one finalist for a final "pass/fail" interview with the state organization that funds the company I've been talking to.  So, if that interview goes well, I hope to have a new job before this job ends.  I should know more in the next business day or two.

Other than that, life is great.  I'm feeling strong in the gym, although I'm sore this week from heavy front squats on Monday.  Tonight's heavy deadlifts are going to be a challenge, to be honest.

Skiing is going great as well.  I've already skied as many days this season as in each of the past two years, and I'll be skiing into April this year.  I should easily double my total ski days from the past few seasons.

Right now, despite a few job worries, life is pretty good.

Monday, January 22, 2018

I'm starting to think that no news is good news

I've been posting a lot less recently.  I think that's mostly because my life has been more free of drama in some ways.

Well, to be honest, maybe I'm just in denial about the drama.  The company I've been working for for almost a decade is about to go under.  Despite my best efforts over the last six months, I still haven't found a new job.

I'm a finalist for one position right now, and I had a phone interview for another last Friday, but jobs at my experience level and salary level in healthcare just aren't that common in Vermont.  I could very easily be unemployed for only the second time in my career very shortly.  I have expanded my search circles recently, looking outside of healthcare, looking at jobs that pay way less than my current position, etc.  I guess that would be called desperation.

The only other time I was unemployed was in 2001.  Because of federal laws, my company had to give me 90 days of severance pay, and I found a new job before my severance pay ran out.  This time, there won't be any severance pay, and the truth is that the company is likely to owe me close to $30K as it goes out of business.  I have no way to recover that money, so I could end up drawing unemployment for the first time in my life.  Considering that unemployment pays less per week than I make in a day currently, I'm terrified by the thought of being out of work.

Medical expenses have really taken a toll the past few years and we simply don't have the savings to fall back on right now.  I hate to admit that, but it's regretfully the truth.

At the same time, I know I'm doing everything I can to find a new job, and my best will have to be good enough.  It is almost unfathomable to me how we would deal with me being unemployed, to be honest.

There isn't much new on the personal health front.  I was supposed to go to Sloan Kettering a few days ago, but due to snow and sleet, we missed our train.  I am now going tomorrow instead and we have bad weather in the forecast again.  So, this time we are heading to Albany the night before the trip, so we have a very short drive to the train in the morning.  The trip to Albany tonight might be a bit difficult due to weather, but we won't have any time constraints tonight, like we would in the morning.

Otherwise, life is great.  I'm skiing every weekend and enjoying my new job at Sugarbush.  I'm in the gym at least 3 days every week.  It usually takes me 6 weeks or so of skiing before I'm physically able to make it to the gym 4x per week, ski 2x per week, and not feel constantly beat up.  This winter, I haven't had a single week of 4 days in the gym.  It's just taking me a bit longer to adapt to doing both activities.

Because I'm going to take a day off of skiing next weekend, I'm hoping I make it to the gym 4x this week, if my schedule allows it.