Wednesday, December 20, 2017

Time for that first skiing post of the season

I've actually been skiing for the past three weeks, and I just realized I hadn't written anything about it yet.

This year, which I think is my 18th season at Sugarbush as an instructor, is going to be different than any other seasons in the past.  Back in October, I was sitting in a waiting room at Sloan Kettering, waiting for the CT scan that would tell me if I'd be healthy enough to ski this year, when my phone rang.

It was one of my supervisors from Sugarbush, and I was glad to hear his voice.  I told him that I'd been meaning to send him and my other boss an email, letting them know what I hoped to do this coming winter.  My goal was to teach younger kids this year.  There were two reasons for this.  First, it would give me more good experience with younger children, which is helpful for a certification exam I hope to take this season or next.  Secondly, in case I struggled at all physically, I thought that skiing with the younger children would be easier.

But, that phone call changed everything.  It turned out that one of my supervisors was gone from the mountain and the other was taking over the program where I work.  And, he needed an assistant and thought I was the right person for the job.

I told him I needed to finish my day at Sloan Kettering before I answered, but that I was definitely interested.

And so, it happened, and after 17 years just teaching and minding my own business, I'm now a (low level) supervisor.  I am essentially in charge of the coaches who teach the youngest kids, so I'm getting my wish to work with the smaller children.  But, a lot of the coaching I'm doing is with other instructors, rather than the public.

Two plus weeks ago, I did my own day of required pre-season training on a Saturday.  The following day, I got to ski with some friends for the day - something I don't get to do very often.

One plus week ago, I spent the weekend training the instructors who are reporting to me this winter.  We have a lot of new instructors, and I was very impressed at how good they all were.  Some have taught skiing before at other mountains.  Some came through our intern program at Sugarbush.  And, others had experience with young children (various outdoor camps, whitewater rafting, being a nanny, etc.).  So far, they've all done a great job.

This past weekend, we started teaching our students for the season.  As usual, we had some hiccups the first weekend, but nothing too major.  It's always a challenge with the younger kids to group them appropriately, and we still need to move a few students to different groups. 

But, I was very impressed by the work I saw from my new charges, and I'm very optimistic about the season.  I spent the weekend skiing from one group to another, offering tips to the coaches to help with opening weekend issues.

At their young ages, the very first thing we want to work on with the kids is balance.  And, balance starts with stance.  We want the skiers to be tall in their stance and also forward.  It's amazing how much you can change a child's skiing just by getting them to stand up taller.  Children who were in wedges constantly suddenly come parallel between turns, even though they may resort to a spontaneous wedge through the turn itself.  For the first weekend, that was the majority of what we worked on.

From there, we will move on to other balance drills the next few weeks, as we give each child the chance to get their "ski legs" back.  It's important to remember that most of these children are very young, have skied a limited number of days in their lives, and we were seeing them on their first day on skis for the season.  It simply takes some time for what they've learned in the past to return.  So, the goal is to make some tiny adjustments, and let the little guys get in some mileage.

As we get to the point where balance is no longer an issue, we have all kinds of things to work on.  But for now, we are just starting and it's all about the balance.

Hopefully, the forecast is wrong and we won't be skiing in pouring rain this coming Saturday.

Wednesday, December 6, 2017

Wow - long time no post

My life can only be described as crazy right now.  I can't believe it's been so long since I posted.  At this time of year, I don't really expect to post on my fly fishing blog, but this one normally gets some attention.

Healthwise, everything is holding steady.  I got through my first round of Ibrance just fine.  I did have a mild head cold at the end of the round, and it's lingering a bit, but it's been pretty mild.  My neutrophils count at the end of the first round was good enough to head straight into the second round.  Other than a few minor issues - hair thinning a bit, some nausea, and a bit of fatigue (really a need for more sleep), I'm doing OK on the medication.  I'll finish round 2 this weekend, get my blood work done on Monday, and then hopefully start round 3 the following weekend.

On January 9th, I will make my next trip to Sloan Kettering to see how the drug is working.  If I've had no growth in my one small tumor, we will simply stay the course.  If the tumor has shrunk or is gone, I'll be ecstatic.  And, if things are still growing, we will discuss other options that I have.  And, there are plenty of remaining options.

While this is going on, I've been swamped at work.  In the past 18 months, I've made IT Security a major focus of my work.  We are a small company, but we still handle protected health information (PHI), and we are bound by the law known as HIPAA.  We had done OK on a a self-assessment tool a few years ago, but I knew that this was not the  same as a full security assessment performed by an outside agency.

But, earlier this year, our biggest customer was purchased.  That organization is now owned by a company, that is owned by a company, that is owned by one of the largest insurers in the country.  Because we use PHI associated with the owned organization, we have to meet the security requirements of a company with annual revenue close to $200B.  Yes, that's a B, as in billions.  We don't even have a million dollars per year in revenue right now, so this is a daunting task.  Many of the things that we were missing were policies.  Those are easy to deal with - write the policy and then enforce it.

But, we are also missing all kinds of tools that monitor systems, looking for bad actors.  I don't have the full costs yet, but my current guess is that we are looking at $25K in upfront costs, and then at least $5K per month in additional charges.  To be honest, this exceeds our profit on this contract, so doing it out of our own pocket is prohibitive.

We are currently working with the big company and our customer to explore alternative ways to pay for this improved security.  I don't disagree with the need to do it, but we simply don't have the money right now.  And, it's been a very good exercise for me.  I have learned so much about IT Security in the healthcare world in the past year, and I am now a better prospective employee for other organizations.  I imagine that I could help to improve the security at most healthcare organizations in the country right now, and I've updated my resume to tout these new skills.

I must admit that our company is struggling a bit right now.  We have only a few paying customers, we have no recent sales, and we have one grant that we are working on.  To be honest, we are losing money at the moment, and this is with most staff going unpaid or working reduced hours.  After 10 years with this organization, 8 of them full time as the head of the software development department, it honestly looks like we might not make it more than a few more months.

So, I've been looking for a new job, and I think everyone in my company is either already employed elsewhere, is planning to retire, or is looking like I am.  I am still working hard to try to keep us afloat, but it honestly feels like a few people have already given up really trying.  If we don't make it, I will certainly be sad.  I've devoted almost 1/3 of my career to this company, I really believe in what we do, and I'd hate to see our products fall into disuse.  But, without one or two new sales very soon, it's hard to see a financial path forward.

This is the first time that I've actively looked for a job since 2006, and the world really seems to have changed in that time frame.  So have I.  I am now officially old in the IT field, and I've clearly hit some age discrimination.  In at least two cases, I failed to get an offer when I was clearly well qualified for the job, and I was stunned by the lack of an offer.  Before I turned 50, an interview always seemed to result in an offer.  Since turning 50, I have not gotten one job offer.  In some ways, this is to be expected.  I'm more senior, in IT leadership, and I have a higher salary.  The higher the salary, the more difficult it is to get a commensurate job.  But, I think age has played a role in a few cases as well.

Currently, I have three options out there.  Only one of them is in health care, so I'm hoping that this situation works out.  In some ways, I think I have an inside track on this job, based on my prior career experience with some of the people at the new company.  I will know more by the end of the week.  The others are in different problem spaces, but the companies seem very committed to doing things the right way, using modern development methodologies, and I am very interested in them as well.

On the workout front, things are moving along just fine.  Since returning to CrossFit at the end of July, I've had four very good months of consistent training.  In three of those months, I tied or exceeded my previous best number of CF workouts for that month of the year.  The yearly calendar does affect how many classes I can get to (holidays can reduce the number, for example) in a month, but the last 4 months have been pretty good.

The only downside is a slight overuse injury that is affecting my right knee.  I am seeing a physical therapist for the knee, and things are improving slowly.  I was unsure how the knee would do with skiing, but I skied both days last weekend with minimal complaints from the knee.

That takes me to my last topic of this post - skiing.  This will be my 18th season as a ski instructor, and I was promoted to a supervisory role this winter.  Rather than teaching children how to ski, I'm going to be a mentor for our younger instructors, training them, skiing with them and their groups, and trying to help them to become better instructors.  I'm excited to be doing this work.  It will be an interesting change from my previous years, and an opportunity to have more influence on the quality of the program where I work.

I do have a trip to Sloan Kettering in January.  I have to hope that the Ibrance is working, and if it is, I'll be free to ski the rest of the winter uninterrupted by any other treatments.

All in all, life is a bit stressful due to the job situation.  But, at the same time, there are changes afoot, and I'm looking forward to some new challenges.  I don't ever want to feel like I've become too old to excel in a new opportunity.  I think I still have a lot to offer in my career field, and I'm likely to get that chance soon.

Thursday, October 26, 2017

A week with the new medication

I've been taking Ibrance for a week right now.  I'm still shocked that my insurance company approved it so quickly, given that it's primarily a breast cancer drug, and not a liposarcoma drug.  But, they approved it and I've been taking it.

After a week, to be honest, the only side effect so far is some nausea right after I take it.  I'm taking an anti-nausea medication with it, and that seems to be working just fine.

I know the side effects tend to be cumulative, although some people see problems with white cell counts fairly quickly.  I am going to have a blood test done next week (CBC), just to make sure that nothing extreme is happening at the two week mark.  After that, we will do the test monthly, just before I start each round.

My local medical oncologist was surprised at the decision Sloan Kettering made when they gave me Ibrance.  She seemed to think that Yondelis or Halaven, both approved specifically for liposarcoma, even though Halaven is also a re-purposed breast cancer drug, might have been better choices.

But, I think she also understands that Sloan Kettering is calling the shots these days, and she didn't try to talk me into anything different.

I've noticed no effects in the gym so far.

I have been fighting a minor injury in the gym.  I have a few "knots" in my right quad, and they seem to be causing my knee to track improperly.  So, my right knee has been sore, mostly at the top of kneecap, but occasionally at the bottom of the kneecap as well.

I had been seeing a physical therapist to work on compensating for having lost most of right psoas muscle, but I think we are done with that aspect of therapy.  I'm doing abdominal work in the gym with very few problems, and the movements that were really troubling me in July and early August, such as running, burpees, rope jumping, and box jumps, are all better now.

So, I'm still seeing the therapist, but now we are focusing on the knee.  She's using a combo of dry needling, massage, ultrasound and Graston tools to work on releasing the knots.  On my own, I'm biking more before CrossFit, to loosen up the quad.  And, I'm using a barbell to roll over the knots in my quad.  It hurts like hell, but things seem to be getting better.  To be honest, the dry needling is the most painful of the treatments, but it seems to be helping, so I'm just going along with it.

I need my quad and knee to be better by the time I'm on snow for the ski season, and that could be just over 3 weeks away, although the long term forecast doesn't look great for snowmaking.

I'm hoping that just a few months of uninterrupted training will be enough to have me ready for the ski season.  I have a new job at the mountain this year, and I expect to ski a lot more this winter than the past two years.

Tuesday, October 17, 2017

Updates from my latest scan

Going into the scan, my brain was really in two modes.  It was all or nothing.  I'd either be clear, or it would be a horrible catastrophe.

I never really stopped to think about other options.  And, another option is what I got.

I got there as scheduled for my scan.  Got my serum creatinine tested (they need to know this to know how much IV contrast my one remaining kidney can handle), and then the scan. 

Then, we got some lunch, but I was so nervous I could barely eat.  I was just locked into this mindset that the scan had to be perfect or it was going to be a disaster.

We arrived for my appointment with the oncologist right at 2:00.  As usual, things were running late, and the later things get, the more my imagination pictures the doc and his staff in the back room going over my scan, trying to figure out what they can offer.

At 3:30, we got called into an exam room.  The first person who came in asked me how I was doing.  She wanted to know how I'd been feeling since my surgery in June.  But, the only thing I could say was  "I don't know; you tell me".  All I wanted were the results of the scan.

My oncologist's PA was very nice to me though, and she immediately let me know that they'd found one tiny new spot in my abdomen, but that it wasn't super concerning.  In a few minutes, my oncologist arrived and explained things in detail.  There was one new spot, not near any organs, and less than half an inch across.  There were three main options:

  1. Remove it
  2. Wait until it got bigger and then remove it
  3. Try a medication to see if we could stop the tumor from growing any more, and in the process, prevent any new tumors from forming.  The medication's brand name is Ibrance.

Option number 1 wasn't really an option.  You can only have surgery so many times, and this tumor isn't worthy of using one of those bullets.  Surgery would be overkill at the moment.

Option 2 was certainly an option.  We could simply wait for it to grow larger and operate when necessary.  The problem with that option is that new tumors might show up in the interim, and one might show up in a bad location.

Option 3 was the most intriguing.  It's an oral medication, not a true chemo, and it targets a particular gene mutation in my tumors.  For some patients, it doesn't work at all.  For the average patient, the tumors don't grow for about 18 weeks, and then the drug begins to be less effective.  And, for some patients, the drug has fully arrested tumor growth for years.

I asked a lot of questions about side effects.  Would I lose my hair?  It might get a bit thin.  Would I be nauseous?  Possibly, but anti-nausea meds or just taking it with food would reduce that risk.  Would I become anemic and have troubles training in gym or skiing?  About 22% of patients see some level of anemia, and it's rarely significant.  Anything else?  Well, the most common side effect is suppression of white cell production, raising the risk of an opportunistic infection.  And, a few people notice changes in how food tastes.  A few get some mild neuropathy.

Oh, and it costs $10K per month and many insurance companies fight it because it's primarily a breast cancer drug.

After going through the likely odds for the side effects (pretty low, to be honest), I decided that I'd rather take the chance, and hope it can suppress any more growth for a while.  To be honest, this particular medicine had been my best guess going into the meeting.  It seems to be more and more commonly used for liposarcoma these days, and only 4 months after surgery, I wasn't really expecting a lot of new tumors.

I really like the medical oncologist that I'll be working with, and he seems to be very comfortable with this as the best option right now.  My surgical oncologist agrees.  And, they got the medication approved by my insurance in 2 days.

I should be starting it tomorrow.  Hopefully, side effects will be minimal, as they are for most people.  And, it would be great to see it work for a long, long time.  I'll take any time I can get, but being in that group of people who respond very well would be nice.

So, life moves on.  No surgery.  No harsh chemos.  No frequent hospital visits for infusions.  Just a pill, once per day for 21 days, and then 7 off.  Repeat until it stops working.

After 3 months, we will do a scan to see how it's working.  Yes, it would have been ideal to be completely disease free.  But, this is probably the next best thing.

So, let's run with it for a while.

Friday, October 6, 2017

Scan time again already

I've been working hard with a physical therapist for the past month, trying to overcome some of the physical deficits I have because of losing most of right psoas muscle.  Things are improving week by week.

Despite a business trip/vacation that lasted 9 days, I still managed 12 days of CrossFit in September.  I'm finally starting to feel stronger and my aerobic capacity is coming around.  I'm able to do workouts now that put me in serious aerobic debt, and get through them without excessively long recovery breaks.

I've been fighting a minor knee issue, but it's not hindering me at all in the gym.  Well, maybe a minor hindrance, but nothing significant.

My back squats, which started at 85# after surgery, have gotten as high as 235# recently.  My Oly lifting is progressing nicely.

And now, it's time for another scan at Sloan Kettering.

I read a number of blogs and publications related to cancer.  Many of them discuss the ongoing mental issues that patients have - either after being cured or as they still deal with the disease.  It is often equated to PTSD.  I can't say that I've ever seen combat or been involved in a shooting incident, so I can't honestly compare my feelings to those of a soldier or cop.  But, PTSD seems like a reasonable way to describe my mindset as this scan approaches.

My anxiety is through the roof.  My mind is full of "what if's".  To be honest, I feel like this scan will tell me a lot, and maybe that's why I feel so anxious.  The surgeon was very positive that he got everything out in June, with clean margins.  The best possible outcome.

If my scan is clean, that claim is pretty much validated.  And, to be honest, I fully believe that he did what he claims and he's given me the best chance that I could possibly have gotten.

But, if the cancer is back, I just don't know how I'm going to react.  I do seem to have a very aggressive version of this cancer, and my 3 surgeries, 2 bouts with chemo, and 1 course of radiation will attest to the fact that it's taken a lot to keep it at bay.

I so much want this scan to be clean.  It would mean I could teach skiing all winter long with no interruptions, something I've been unable to do the past two winters.  It would be good for my career as well, to be honest.  I need to demonstrate to my employer that I can go more than a few months without treatment and that they can count on me to be fully present in my job.

Also, as surgeries and other treatments mount, I never know when a treatment will change my life permanently, and for the worse.  Right now, I'm still able to train hard.  I'm able to fish when I want.  I'm able to ski and teach skiing.  But, more chemo or surgery could make those things difficult or impossible.  This last surgery took longer to recover from than the previous two.  It might have been related to the chemo I'd had before surgery, which was also pretty harsh.  But, getting back into the gym was harder this time.  Running is more challenging than ever right now.  Some movements that are dynamic or emphasize the core muscles are especially challenging.  Months after chemo and surgery, I still find myself sleeping close to 12 hours on weekend nights, just to recover from the stresses of the week.

And most importantly, if the cancer is back again so soon, it's a bellwether of the future.  It will really tell me that I'm probably never going to have long periods of time where I'm disease free, and that I'm truly moving along a timeline that is going to end badly, and more quickly than I'd like.

Of course, this might all just be the negative voices in my head.  But mentally, I really need this scan to be clean.  If it's not, I honestly don't know how I'm going to deal with more treatments so soon after the last.

This whole process is something I would never wish on any human being, no matter how I feel about them.  Sometimes, it's simply too much to deal with.  I've got the best possible medical team treating me, and I just have to hope that they can continue to keep the disease at bay.

Tuesday, September 26, 2017

No news is good news?

I had no idea it had been weeks since my last update.  I've kept my fly fishing blog up to date with my latest adventures, but nothing here.

September has been very, uh, busy.  I guess that would be the word.

I spent some time at a healthcare conference in Maine.  I got to see Tom Price speak (regretfully I didn't get to ask him any questions), and then had to laugh when he found himself in hot water for using charter flights to attend a private business conference.

I also got to hear Todd Park speak and I had a very nice conversation with him.  For those that don't know, Park served as the CTO of the country for President Obama.  He was also one of the founders of the company that was putting on the conference I was attending.  He focused on three things in a talk that was way too short.  Passion, diversity, and the need to make a compelling financial case in the healthcare software business.

That last point might seem obvious, but it's been a sticking point for my current company.  We sell a service that is provided through software.  We don't actually sell the software to people.  We sell them the service and then we get some data from the customer and run the software for them.  In our healthcare system, about 80% of all patients are still insured under the old standard "fee for service" model.  That is, you see a provider, you get a service, and the insurer pays for the service.

For about 20% of our patients, there are value based incentives.  That is, providers are paid not strictly for the services they provide, but rather based on patient outcomes.  It's easy to estimate what it should cost to cover a particular patient in a year.  The insurance companies have it down to a science.  If you talk to any insurance company, and you tell them you have a 56 year old male, diabetic, hypertensive, obese, but no known kidney problems, and no other diabetic complications, in a particular zip code, they can give you a quick estimate of what it would typically cost to care for that patient for a year.

Value based care is a system where we give the doctors leeway to try to improve patient outcomes.  If the outcomes improve, the doctors make more money.  If the patients get sicker, the doctor makes less.

My company's software costs money to license, obviously.  And, it increases revenue in primary practice and in the lab.  But, it also cuts revenue in the emergency department and reduces inpatient admissions.  For patients with kidney disease or diabetes, the use of our system improves the patient's health and reduces the cost of care.

In the fee for service world, this is actually seen as a negative.  With so many healthcare organizations now vertically integrated, the lab, primary care, ED, and inpatient setting are all part of the same organization.  In those organizations, when my company talks to the hospitals, we are frequently told that using our software is the right thing to do, but they can't afford to use it, even though it will make their patients healthier.  That is the absurdity of fee for service.  Hospital organizations, including places where I've gotten care, have basically told us that they would rather make more money than have healthier patients.

In the value based care world, our product is easier to sell, but it's far from an easy sale.

I got a chance to talk to Todd Park about this problem.  I've always been a dreamer, I guess, thinking that hospitals would do the right thing and use our system anyway.  But, we've been rebuffed so many times that it's shocked me.  And, Todd Park confirmed that he thinks it will stay this way.  He said that without value based care, dollars will always be more important than outcomes.  That is truly disheartening.

At the same time, he said that with 20% of the policies out there including some sort of value based care, the market for our products is huge.  And about 1/3 of those 20% are fully at risk, meaning that doctors get a fixed amount to care for a patient, and their profit is purely outcome driven.  So, that might be about 7% of the US market where our product is an ideal fit.  But, if we could get to 1% of the patients in the country, we would be wildly successful.  Our patient count is in the tens of thousands of affected patients, out of candidate pools of a couple hundred thousand patients.  One percent would be a candidate pool of 3.3M people - easily 10x what we support today.

I've been involved in this software for most of the past 15 years.  I've been with the company in some capacity or another for almost 10 years (I worked on the initial software at a prior job), and I've been here full time for 8 years.  I truly believe that we have a product that has a lot to add to the care of chronically ill patients, and I desperately want us to succeed.

I can go into our databases, and find patients whose lives are better because of our software.  Is there a better reason to get out of bed and go to work everyday than knowing you are improving people's health in the short and long term?  I honestly don't think so, which is why I love my current job so much.

And yet, we are not succeeding financially at the moment, and that bothers me.  I don't want to have to find a new job.  To be honest, the bias against people my age in IT is very real.  Finding a new job at my age gets tougher and tougher.  Plus, I love what I do now.

We just have to figure out how to get to the right people and convince them of our value proposition.

And, that was quite a tangent.

After the conference was over, I took a week of vacation.  It was my first real vacation time, one long weekend in NYC excepted, in about a year.  I spent my time, mostly alone, fishing in NH, and if you care to read about it, a link to my fishing blog is in the sidebar.  I would rather have been on vacation with my wife, but she knows how much I love fishing, and gladly supports this solo trip that I do every fall.

Now, I'm back at work and back in the gym.  Due to the time away, I won't do as many CrossFit workouts in September as I did in August, but it will still be a solid month.  I spent most of my vacation on my feet, and although fly fishing isn't exactly taxing, it can be a form of exercise.  I challenge almost anyone to walk 10,000 steps in a day in rivers, wearing big, clunky waders and boots, where half of your steps are against the current.  It's not a traditional workout, but it can be very tiring.

Right now, I'm trying to live with the heat in the gym as the month winds to a close.  I'll likely get about a dozen CF workouts this month, after 17 the month before.  I have some more vacation planned for October (a few days in NYC - my wife and sister are going to see Hamilton, I'm going to Sloan Kettering), and a weekend at a Penn State football game.  So, my October numbers for CF won't get to 17, but I should get more days than in September.

And, with October looming on the horizon, I'm starting to think about skiing.  If my scan at Sloan Kettering is clean, I will be able to ski the entire season, uninterrupted by any treatments, for the first time in three years.  That would make me extremely happy.

Friday, September 1, 2017

August Summary

I made it to CrossFit 17 times in August.  That was after one day in June and two in July.

The most I've ever done in a month is 18 days, and I came within one day of tying that record.

Since our gym opened exactly 7 years ago today, I have done 880 CrossFit workouts.  Tonight will be number 881.

Things continue to improve, but slowly.  My running is getting better, but it's far from good.  My squats this week were 20 pounds heavier than a few weeks ago, so that was good.  I did deadlifts last night at 185# - still less than half of my lifetime best, but I was happy with that number.  There was no doubt that I could have lifted heavier, and next time I do deads, I will probably shoot for 225.

But, I'm still the slowest runner at the gym, and I'm using fairly light weights for a lot of the workouts.  I feel kind of pathetic, but after the chemo and surgery I've been through this year, I need to learn to be grateful that I'm out there.  Many people I've met (online) who have liposarcoma have had treatments that make just walking a challenge.  I'm lucky that I'm still able to challenge myself this way.

Physical therapy is really exposing some imbalances and weaknesses, and I've got some work to do at home to work on that.  It's amazing how losing 2/3 of that one muscle can affect overall strength and balance.  At times, I can really feel other muscles being recruited to cover the muscle that's essentially gone.

My September totals for CF will certainly be lower than this month.  We have five weekends in the month and I rarely do CF on the weekends.  I also have a nine day trip that is a combo of business and vacation, and there will be no CF for those 9 days, most likely.

If I get 12 days in September, it will be a good month.

Right now, I'm hoping that a clean scan or two will let me stay focused in the gym, with no interruptions for treatments.  If that happens, I should do my 1000th lifetime CF workout sometime next summer.