Thursday, December 27, 2018

Pain Management and the Opioid Crisis

It seems like you can't help but trip over articles about the opioid crisis on the internet these days.  Go to any major news site and they'll have one or more articles about the issue on their main page.  Sometimes, the articles are puff pieces, with national statistics showing that things are still getting worse, and sometimes the pieces will be in depth articles about how the opioid crisis is hitting a small town or a big city near you.

I'm torn on the issue and what should be done about it.  Part of my ambivalence is that I'm personally on a high dose of opioids, and I hate how the system for controlling them seems to err on the side of denying the medications to patients.  For example, if I was going out of town and my prescription was due to be refilled on my second day out of town, I can't get it refilled early to accommodate my travel plans.  There aren't any exceptions to this rule, unless your provider explicitly states on your prescription that it can be filled on the early date.  And, prescribers are reluctant to provide early refills because it could be a request based on addiction.

Also, Vermont's most recent attempt to legally help out in this battle has imposed things that I think are burdensome to the patient.  The first part of the law requires that I see my prescriber every 90 days.  My doc would typically want to see me every six months, but the law now requires an appointment every 90 days.  Secondly, if I have a prescription for a benzodiazepine (anti-anxiety drug) and an opiate, I am required to have a prescription for NarCan, the drug that can be used to counteract an overdose.  It's unlikely that I'd ever overdose on this combo of drugs, but I am required to have the NarCan.  I had already met my out of pocket max when I got the prescription, but it cost my insurance company money to cover that prescription for me and every patient who has both prescriptions.

Lastly, VT has an interesting tiered way of measuring how much medication opiate users are getting.  Basically, they have a way to convert the dosage of any opiate to a morphine equivalent.  There are tiers that define who can get a 7 day supply vs. a 30 day supply, and there are differences for patients who are considered opiate naive vs. patients who are regular users.

I am not considered opiate naive, and I've been on painkillers for about 30 straight months right now.  When I started, I was taking 15 mg of oxycodone per day.  That works out to a morphine equivalency of 22.5 mg per day.  The threshold for a high dose user is 90 mg per day.  Over time, I have progressed from 15 mg per day to 30 mg and then to 60 mg.  When my dosage reached 60 mg, which is a morphine equivalent of 90 mg per day, I was officially classified as a high dose patient.  Getting to that level didn't really change anything in how the law affects me, but it honestly didn't feel like I was on that high of a dose to be put in that high risk category.

In September, things took a turn for the worse for me.  My pain levels escalated quickly in a period of week and the 60 mg of oxycodone was suddenly not enough.  In retrospect, this was after a chemo had failed and I went through a period of time where I wasn't being treated at all.  I believe I wrote about the terrible week that I endured, but here's a quick synopsis of how we got my pain back under control.

I woke up on a Monday morning in tremendous pain.  I had been taking the oxycodone through the night, and I'd already met my dosage for the day by the time I got out of bed.  I told my wife that I was going to call in sick and I'd consider trying to get an appointment to see my doctor.  By mid-afternoon, I was feeling worse, so I went to the ED of a local hospital  I'd had enough oxycodone that I had my son drive me to the hospital.  They monitored me for a few hours, did an extensive check of my medical record to see my usage patterns, and after a few hours of doing nothing, they gave me a new prescription.  It was for dilaudid, which they described as about 10% more potent than oxycodone in the dose that they gave to me.  The prescription was only for a week's worth of medicine, and I was advised to follow up with my PCP.

The next day, I called in sick again.  The new medicine hadn't made much of a dent in my pain levels.  I contacted my primary care provider through the hospital's patient portal, and she luckily saw my message on a day that she wasn't working.  She gave me her cell phone number and asked me to text her.  She was in agreement that the dosage change was likely insufficient and she wanted me to be seen at a teaching hospital - either Dartmouth or the University of Vermont Medical Center.  So, the next day, I called in sick again, and I had my wife drop me off at the ED at UVMMC.  It was a slow day in the ED and I got some prompt attention.  Their first goal was to get my pain under control.  It took two doses of morphine to achieve that goal, but we got there.  They ordered some imaging to see if my tumors had grown, to explain the new pain.  The imaging showed that they had grown since August, but it was tough to measure how much.  They were comparing a CT scan to an ultrasound, and comparisons between the two are not that easy to make, at least for the tumors I had.

By early afternoon, my morphine had worn off and this time, it took 3 doses to get it back under control.  This concerned the doctor.  Finally, he offered me two options.  He could either take a guess as to what would work and send me home with a new prescription, or they could admit me and do a full pain evaluation with pain specialists from the oncology center.  This was when the magnitude of the problem really hit home.  He was telling me that things had progressed with the disease and that it made sense to do a more thorough pain evaluation.  The way he presented it to me, it was clear that he expected that I would just take the prescription rather than being admitted.  But, I wanted the issue to be resolved, and I chose to be admitted.  By late afternoon, I was doing interviews with pain specialists.  This included doing an Advance Directive, in which the doctor advised that she thought that I should decline CPR if things progressed to that level.  This scared me again.  Was I really this sick?

By about 6:00, I was transferred to an open bed on the cancer ward.  The doctors had conferred and they started a new dose of pain medications right away.  This time, I was going to add Oxycontin - the drug frequently referred to as "hillbilly heroin" to my pain management.  The doses that they tired were 40 mg of Oxycontin every 12 hours along with my old dose of oxycodone - 10 mg every 4 hours for breakthrough pain.  That night, I slept through the night for the first time in over a week.  Even though the nurses were busy taking vital signs, I was able to sleep.

By early afternoon the next day, the doctors were comfortable that they had gotten the doses of the medicines correct and they suggested that I go home with the new prescriptions.

My new dose of oxycontin plus oxycodone was a total of 140 mg per day, or a morphine equivalent of 210 mg - more than twice the high dosage threshold.  Three months later, I'm still on this same dose of medicine and it seems to be working.  I am no longer driving.  I gave up alcohol.  I am fighting persistent nausea, which might be caused by the pain medication, but I need the pain medication.  The alternative would be to try Fentanyl patches.  If you've read any of the articles about the opioid crisis, which is how I started this conversation, Fentanyl is today's bogeyman.  The problem is that Fentanyl is exceptionally strong - way stronger than morphine or dilaudid or oxycodone, and it's ending up in street drugs.

So, I'm now on a very high dose of medication.  My primary care doc is on board with this and she writes my prescriptions every month.  Things are working.

At the same time, I'm a high dose user.  But, I have cancer and the system isn't preventing me from getting the medication that I need.

I was lucky that I got the appropriate level of care.  How many others are given these drugs by doctors who mean well, but end up with the patient being hooked on the medications?  How many people started out with a strain to their back and six months later they were hooked on high dose painkillers?  And, how do we help those people once they've become addicted?

At a time where there is a big push to contain the costs of healthcare, not everyone can afford to go to a rehab clinic.  There aren't enough rehab beds for everyone who needs treatment.  How many people end up homeless and injecting street drugs because their well-intentioned doctor gave them too much pain medicine?  CNN has an interesting article about a neighborhood in San Francisco that is worth a read.

I do believe that we need to treat rather than punish the people who end up addicted.  My docs don't care if I become addicted.  I will be on pain medications for the rest of my life.  As long as I am safe (being smart by not driving, for example), it makes sense for me to be on these medications.

I feel a tremendous amount of sympathy for those who are addicted.  It could have happened to me under the right circumstances.  I want to see this problem fixed, but does the US have the will and the money to do it?  How much would it cost us in insurance premiums to be able to offer quality rehab programs to everyone who needs one?  What about people who are treatment resistant - people who need multiple trips to rehab and they still aren't clean.  I have friends who have lost loved ones to this epidemic.  None of them want to see punishment as the solution.

But, until we find the will to pay for treatment for everyone, I doubt that this problem can be solved.  How much will the US tolerate before someone screams "Enough!"

Wednesday, December 12, 2018

Little things going my way - an optimistic update

Lately, I've had some little things that are going my way, and as I stare at the big picture of the cancer and my treatments, I wanted to take a moment to acknowledge the good things that have been going my way.

When I started my last chemo and changed my pain medications around, I got connected to Matthew, a social worker at the local teaching hospital.  He was assigned to me as my social worker, and immediately got to work seeing how he could help me.  We agreed that I had a good support system at home and that I'm still able to take care of myself, but when I told him how my company had treated me, by reducing my role and my income so dramatically, he said he thought he could help us out financially, even though we still make well above the median household income in VT.

The first thing he did was get us a $300 stipend from the hospital to help cover some unexpected prescription drug costs.  That offset some costs we encountered when my pain medicine regime was changed so dramatically in September.

In addition, he applied to a local charity on our behalf - a charity that helps people to make ends meet by helping with a household bill - rent, fuel bill, car payment, etc.  It took some paperwork, but that charity ended up paying our car payments for a month.

Another little perk was a free gas card to help offset our commuting costs.  It was just one tank of gas, but every little bit helps.

In addition to working with charities, another social worker was assigned to work with my insurance company because my insurance company declined to pay for one of my pain medications.  I paid $550 out of pocket because I was afraid I'd end up being readmitted to the hospital without the medication.  The odd thing is that it turned out I was covered for this medication, as long as I used the brand name medication and I had a prior authorization.  But, that first time, they sent me home with the generic medication and my insurance declined to pay for it.  But, after a lengthy appeals process handled by the social worker, my insurance company relented and they have now refunded me the entire amount of the prescription.

So, lots of little financial things have been going my way.  Yesterday was even better though.  My assigned social worker sent me an email, asking if I was interested in a free week in a high end rental home in Stowe, VT.  Apparently, the week had been donated to a cancer fund raiser, and the person that won the auction donated it back to the charity, to be used by a cancer patient.  My social worker suggested that I would be the ideal recipient for the week in the house.  So, we are now trying to find a time that the property is empty.  It looks like it will be in April, which could mean some late season skiing at Stowe.

If you add this in to the two fundraisers that my gym has done for my wife and me, I feel like we have someone looking out for us.  In reality, it's just friends and, in some cases, charities that are funded through the kindness of others, but it's nice to know that these resources are out there.  I know that there will still be tougher days ahead, but for now, I am feeling blessed, a word that I rarely use any more.

One quick cancer note: I had a CT scan done yesterday here in VT.  It will be sent to Sloan Kettering and the doctors there will make the final determination on my next treatment.  It is likely to be proton beam therapy at ProCure in NJ.  My insurance has approved this treatment, and it has the potential to reverse some of the symptoms that have gotten worse in the past few months.  The other alternatives are chemo, which I've been doing, or surgery, which my surgeon seems reluctant to do right now.  So, now I wait to hear from the docs at Sloan Kettering before I book my next treatment.

Friday, December 7, 2018

The plan going forward

I spent Tuesday at Sloan Kettering.  I started the day with a CT scan, but it was barely a scan.  Just my lungs and done with no contrast.  As it turned out, they should have done the full scan.

Next, I visited the radiation oncologist.  His office was unhappy that there had been the mix-up with communications and that I hadn't gotten the go-ahead to do the radiation therapy despite the tumor growth.  The doctor's comments regarding the communication were "It's not that hard".  He said that it's imperative to get the radiation started as soon as possible, while there is still a window to do it.

From there, I had my vitals done and then we waited.  And waited.  We finally got in to see the medical oncologist.  He was still fine with radiation as well, but he was also glad that we had started the chemo when the radiation got delayed.  He wants me to stop the chemo during radiation, because the chemo hasn't been studied in conjunction with radiation.  That reminds me that I need to cancel my next chemo appointment.

The surgical oncologist, who really coordinates my care, was last.  And, we were running out of time to make our train home.  He said that he was fine with doing the proton beam therapy radiation, but he wanted to see a CT scan first.  So, I've got that scan scheduled for next Tuesday morning.  So, we seemingly went 3 for 3, with everyone in favor of still doing the proton beam therapy.

I got home late on Tuesday night and Wednesday morning included a big presentation at work.  I'm happy to say that the presentation went well, at least in my opinion.

From there, I headed to the hospital for blood work and chemo.  I had my port accessed and blood drawn first.  From there, it was a 45 minute wait for a chair in the infusion bay.  The first thing the nurse said to me when I got to the infusion bay was "Do you know what your hemoglobin is?"  I told her no, but I assumed from her question that it was low.  It had been 9.9 only 9 days ago and it was down to 7.6 this week.  They immediately began scheduling me for a blood transfusion.

The chemo went pretty well and I was back at work pretty fast.  Yesterday, I spent another five hours at the hospital, getting two units of blood.  I was hoping that the blood would make me feel better, but it hasn't.  I'm guessing that it's the side effects of the chemo that are still keeping me feeling so tired.

I still have no appetite.  I told my wife earlier today that I feel like I've spent my entire life looking forward to my next meal.  Right now, I feel that if I just decided to stop eating, my body wouldn't care at all.  My body would happily let me starve to death.  It's no fun trying to force yourself to eat every meal, but that's where I am.  Nothing tastes good, and I just have no appetite.  It's honestly scary, because it feels like my body is quitting on me.  Having an appetite is essential to survival, and I don't have one.

So now, some more waiting.  The CT scan is Tuesday morning.  Then, it will take a week to get it sent to Sloan Kettering.  This time, I expect a rapid turnaround on the read, and permission to get to radiation treatments.  Then, I have to start scheduling appointments at ProCure in NJ, the site for my radiation therapy.

Wednesday, November 21, 2018

Reasons to be Cheerful

Cheerful.  Thankful.  Either of them fits the holiday, in my opinion.

It's been quite a roller coaster in the year since last Thanksgiving.  A year ago, I was training in the gym regularly, I had more energy overall, and the cancer was more in control.  Yet, I have plenty of reasons to be cheerful or thankful.

First of all, I'm still on the good side of the dirt.  My health might not be where I'd choose it to be, but I'm still alive and kicking.  I just talked to my boss at Sugarbush and I'm planning to ski this coming Saturday.  A few weeks ago, just being able to ski was in doubt.  It won't be easy, but I'll be out there.

Thanksgiving tomorrow will be a fairly quiet affair.  Last year, I was in PA for Thanksgiving, celebrating with my brother, sister and uncle, and my uncle's extended "family".  This year, it will be my wife, my son, and my wife's parents.  That's it.  My sister-in-law is sick,so that cuts down on the crowd.  But, I'm healthy enough to cook for the people who will be there and I can still afford to put together dinner for a crowd.  I'll do so gladly.

I'm still employed.  At this time last year, I was on the verge of losing my job and I was struggling to find a new job.  It took a while to find a new job, and things haven't gone quite as expected at that new job in my first year.  At the same time, I had to tell a new employer that I had cancer and they've been accommodating of the situation.  I'm still getting paid, I can afford to pay my bills, and I'm thankful that I'm employed.

I'm thankful for the friends in my life.  In the past year, the people at my gym bound together and did a fundraiser for my wife and me, to help offset our travel costs for my cancer treatments.  We haven't had to travel a lot recently, so that money is set aside, waiting for the next time that we need it.  I'm thankful for the friends in my life, including the handful of readers that read this blog.  I know that I'm lucky to have the friends that I do, and I never take them for granted.  It's interesting how people react to a cancer diagnosis at times.  I've had people who have disappeared from my life since my diagnosis.  Others simply ignore that aspect of my life.  But, for the most part, my friends are actively engaged with me, concerned for my health, and they've been there if I've needed them.  That's something I never take for granted.

I'm thankful for my children.  My daughter is currently finishing up a semester in Spain.  She's had a great adventure there this fall.  My son recently started a new job and it seems to be going well.  I'm proud to call both of them my children.

Lastly, I've got my wife.  Her life has been made tremendously more difficult by the cancer.  I rarely drive any more and my wife has gladly stepped up to do the driving that I don't do any more.  She is cooking dinner more often, often cooking two meals when my stomach isn't up for the regularly scheduled dinner.  She never complains, even though I know it's a burden on her.  If our roles were reversed, I can only hope that I'd be there for her the way she's been there for me.  Having her by my side makes all of this tolerable.  I don't know where I'd be without her.

There you go.  As we approach Thanksgiving day, I have many reasons to be cheerful and thankful.  Despite the cancer, I still consider myself to be a very lucky man.

Friday, November 16, 2018

More of the same

I am fighting a terminal disease.  It seems to me that I should be out there every day, living life to the fullest, having new adventures, chasing dreams, etc.  But, the reality of life is much more mundane than that.  Don't get me wrong.  If I won the lottery tomorrow (not likely given that I don't buy lottery tickets), I would quit my job and start seeking out bigger adventures.  But, the reality is that I have responsibilities, a family to take care of, a job that requires I show up to work, and I can't just drop everything and go out chasing wild adventures.

Besides, I'm tired most of the time and I need my rest.  I hate to say it that way, but every week is fairly similar right now.  I start out Monday feeling pretty good, after resting for most of the weekend.  As the week progresses, I get more and more tired, and I find myself falling asleep earlier each night.  By the time Friday rolls around, I'm exhausted. And then, I rest up on the weekend, so that I'm ready to go again for the next week.

Last weekend, I got out of the house on both days, which is unusual for me.  On Saturday, I had my preseason orientation at Sugarbush, which took half of the day.  My wife drove me to the mountain and then picked me up.  After the orientation, we went out to the new tasting room for Lawson's Finest Liquids.  Regretfully, I stuck with water as others drank beer.  But, it was nice to be hanging out with my skiing friends again.

On Sunday, I had to go to Burlington to get a blood transfusion.  My hemoglobin levels were really low at chemo last Friday and for the first time, they wanted to do a transfusion.  In the end, I'm glad I did it, because it increased my energy levels for a few days, at least.

But now, it's Friday again, and I'm tired.  Sugarbush opened for the season today and I could ski this weekend, but I know that I won't.  Tomorrow morning, we have the Thanksgiving farmers' market to attend in Montpelier, and that will be my activity for the day.  I am hosting Thanksgiving for my wife's family, and I need to do my shopping tomorrow.  I am sure that next Thursday will be a challenging day for me; cooking for 9 people will take a lot out of me.  I'm working the next day (voluntarily) but at least I'm working from home.

Suddenly, it's the holiday season.  I have to figure out how to do any Christmas shopping this year with minimal effort.  It might be an Amazon kind of Christmas this year.

Actually, the biggest thing I'm looking forward to is my daughter returning home after her semester in Spain.  She has only been gone since late August, but she will miss Thanksgiving at home this year.  It will be her first ever Thanksgiving away from home.  She returns home on 12/14, late in the day.  It will keep me up past my bedtime, but I can't wait to see her that day.  Once she's home, then Christmas can happen.

Thursday, November 8, 2018

For now, it's status quo

I finally gave up on getting rapid resolution out of Sloan Kettering.  They were not answering my questions, and sometimes I had the impression that they didn't even understand that I had a problem in knowing what to do next.  The docs at Sloan Kettering set me up for a long day at the hospital on 12/4, and I'm just going to wait until that day to raise the treatment issues with them.  I wouldn't do it this way if I wasn't already in treatment, but I am being treated, so I'll go with that treatment for now, and hope it is effective.

I think that the radiation oncologist will be surprised when I meet with him and he finds out that the radiation hasn't happened yet.  He doesn't live in the world of insurance approvals and having bureaucrats run your life.  At the same time, I tried to work with his office to see what they wanted me to do, and I got nowhere,  So, they can't claim that they weren't informed of the problem.

This will be my first day ever at Sloan Kettering where I'm seeing a radiation oncologist, a medical oncologist, and surgical oncologist, and my last appointment is with both the medical and surgical oncologists together.  By the time that day is over, I should have my future laid out for me.

My insurance approval is good until April and my wife and I are staying on the same insurance policy next year.  So, the approval should be good for January if we do proceed with the radiation.

My new reclining chair at home has been quite a relief.  It allows me to relax comfortably in my living room, without hitting the same pressure points that my bed hits.  My fatigue is so bad these days that I felt like I was getting bed sores from laying down much of the time.  The chair has relieved some of the pressure points and I'm feeling much better just a week after getting the chair.  My wife is a genius at times.  Well, maybe all of the time.

This coming Saturday, I have my orientation day at Sugarbush for my 19th season of work.  As I mentioned in my last post, I tried to resign my position and they basically refused to accept my resignation.  My goal is to work within what my body can handle and have some fun.  I don't think that I'll ever work 2 days in a weekend, but I will try to work the more stressful days - opening day for the program that I work in, holidays, etc.  I'm glad the mountain was so open to accommodating my illness.  I think that's one of the advantages to working for a privately owned mountain rather than a mountain owned by a mega-corp.  Being an employee there really feels like home, and I really appreciate that my employers were open to a creative solution to keep me on the hill.

So, for now, I stay the course.  By the time I get to NYC, I will have finished 3 cycles of Eribulin, the current chemo drug.  That should be enough time to see if it's having any effects.  And, we are doing something, which is better than doing nothing, so I'm OK with waiting a bit to decide on the radiation.  I just hope the docs aren't surprised that the radiation isn't done.  I've contacted their offices numerous times to discuss this issue.

Friday, October 26, 2018

Now, a Treatment Dilemma

Last Thursday, just before I left my office for my chemo treatment, I got a call from ProCure in New Jersey.  ProCure is the proton beam therapy center that Sloan Kettering wanted me to go to for proton beam radiation.  They were calling me to tell me that my insurance had finally approved the treatment.  I've since gotten a letter from my insurance company outlining the approval.  They consider the treatment to be experimental, but they've approved me for a one-time-only treatment. 

But, since we decided to pursue this therapy in August, my tumors have continued to grow and I have a new CT scan.  So, I contacted my doctors at Sloan Kettering to be sure that they still want me to pursue this option.  A week later, they still haven't decided.  I know that part of that time, they were waiting to receive my CT scans on a CD.  I'm dumbfounded that they still use US mail and CDs to exchange this information.  Doing that kind of healthcare information exchange is what I do for a living.  Yet, a major teaching hospital and one of the top cancer centers in the world still rely on US mail to exchange results.

Hopefully, I'll have an answer in a few days time.  If they still want me to pursue this option, we will have to decide whether to also continue chemo or if I should take a break from one while doing the other.  Basically, I would need to do a short trip to NJ so they could do measurements and get me set up for the treatments.  They would do a full body mold that would hold me in place during the treatments, and they would then use some sort of imaging to direct the beams during the treatment so that it gets to the precise location they want to be targeted.

Then, 2 weeks after the initial visit, I would return for an 8 day stay, and I would receive 6 treatments over those 8 days.  I would be able to work remotely from NJ while I needed to be there, so that should minimize the impact at work.  My wife would need to go with me (a vacation in New Jersey - how exciting!), and we are hopeful that she could work remotely as well.

My biggest concern is leaving the dogs at home with my son for the time we were gone.  That's a lot to ask of him, but he has said that he thinks he could take care of them while we were out of town.

It would be the longest period of time we'd ever left a child at home alone.  He is a full grown adult, so I hope he can handle it, but I still worry.  It's a parent's prerogative to worry about these things.

I'm hopeful that if radiation was successful that I might get back into the gym after treatments, but I'm thinking too far ahead there.  I need to get the treatments first, and then worry about the post-treatment issues.

My wife suggested this week that we should consider getting a reclining chair at home.  I spend so much time in the living room these days, uncomfortable on our couches, that she thought a recliner might be good for me.  I do spend a lot of my time at home just resting these days, so maybe it makes sense.  But, it also has me screaming "grandpa" inside my brain.  Aren't recliners for old people?  I remember my grandfather spending his later years in his recliner at home.  He had it positioned so that he had the best view of the TV in the house, and after dinner, he could always be found in his recliner, commanding the remote control.  How did I get so old and frail?

But, it probably makes some sense, so we are going to do some shopping this weekend and see what we find.

Lastly, I tried to resign from Sugarbush this week.  After 18 years, I just don't think that I can pull it off anymore.  I explained that I didn't think that I could work enough and that I thought I'd be a burden rather than an asset.  But, my boss and the ski school director had already discussed this possibility, and they declined my resignation.  They are going to let me work as little or as much as I can handle, and I'll get to keep my ski pass.  I am guessing my wife will keep her pass as well.  I'm grateful for the offer that they've extended to me.  It will allow me to stay involved in the ski school without much of a commitment.  I'll work the busiest days of the season, no more than one day per weekend, and I should still be able to get enough rest (in my new recliner) so that I'm good for the work week.  It's all a matter of finding balance these days.

I'll post an update here as soon as the doctors decide on the next treatment steps.

Monday, October 15, 2018


As I enter my 4th week of not being able to train at the gym, I'm really starting to wonder about the potential permanence of some recent changes.

I am hopeful that the new chemo will work and reduce my tumor size.  If that happens, I should be able to reduce my pain medication.  That might allow me to train in the gym again.  It might allow me to do more than go for an easy two mile walk as my "exercise".  I did actually walk 5 miles yesterday, and I'm actually a bit sore from doing that.

How far will this extend?  Right now, I'm guessing that I'm not going to be able to ski this winter.  I can't ski with this much pain medicine in my system.  I can't function at my job at the mountain.  So, after 18 seasons, am I done being a ski instructor?

Will the nausea ever decrease?  Or, am I in a battle just to get some calories into my system, and that's the new normal?  Yesterday, after the aforementioned walk (in Stowe on the bike path), my wife and I went out to dinner with friends.  I ordered a side salad and an appetizer, but to be honest, nothing on the menu looked palatable.  I managed to eat most of the salad and I started on my scallop appetizer when my body quickly and violently rejected the food I was trying to force down.  It feels as though my body simply won't eat any vegetables right now.

After the salad came back up, I was able to eat my scallops, but the beets and grapefruit that came with the scallops went untouched.  Is this the new normal?  Will I ever return to having a normal appetite?

Because of the pain meds, I'm not driving.  As long as I'm on this level of medication, I don't think I'm going to be able to drive.  Should I simply accept that I won't ever drive again?

It feels like my identity is being stripped away.  For 20+ years, I've defined myself as an athlete of some sort.  For years, I did triathlons.  Then road racing.  Then ultramarathons.  I never imagined that I'd give up being a runner. 

But then, at just the right time in my life, CrossFit came along.  For the past 8 years, that has been my obsession.  I know I'll never touch my lifetime PRs in the gym again, but will I ever be able to lift again?

If I lose the ability to train, to teach skiing, to do something as simple as driving, what is left?  Fishing?  I have to admit that I haven't been on the rivers since June right now.  Part of that was due to stream conditions, but part of it was malaise from the cancer.

I've been thinking that maybe it's time to start selling my fly fishing gear.  I know that I'll wait until next spring before I make a decision, but I've been thinking about it.  I know what my fly fishing gear is worth, and I can get a lot of cash if I sell it myself.  If my wife needs to sell it on her own in the future, she will never get fair value for the equipment that I've accumulated over the years.

I guess I'm dancing around the real issue here.  This feels like the beginning of the end, to be honest.

Maybe the chemo will be wildly successful.  Mathematically, the chance of significant shrinkage of my tumors is probably around 10%.  Stabilization is a 1 in 4 bet.  Not great odds, to be honest.

Median survival for people on the chemo that I'm on now is 16 months.  It is only used after a number of other treatments have been tried, which is exactly where I am.  It does increase survival even in cases where the tumors continue to grow, but the more they grow, the lower survival time is expected to be.

I hate to be so maudlin, but this disease is going to kill me at some point in time.  And, it's starting to feel like I'm on final approach.  I hope I'm over-reacting to a rough patch, but I also need to be honest with myself.  Maybe I'll delete this post in a month because I'm feeling better, I'm back in the gym, and I'm ready to take on ski season.  But, I honestly doubt that this will be the case.

For now, I feel empty.  Like I've lost a huge amount of what makes me who I am.  I'm at a loss.

Friday, October 12, 2018

Moving on

Since my last post, I think I managed to hit a nadir and I've gradually turned things around.

Let me catch you up.

So, insurance still has not approved, nor have they officially denied, my request for proton beam radiation.  But, I simply can't wait anymore.  Things have been getting worse and it was time for action.

Since I last posted, the pain issue really exploded.  My pain levels were drastically increasing and my pain medications just weren't keeping up.  It really peaked on a Monday and I had to call in sick.  I couldn't get in to see my primary care provider, so she suggested that I visit the Emergency Department at our local hospital instead.  So, I did that.  I spent about 5 hours there, and at the end, they just threw a new prescription at me for a slightly stronger pain medication and they sent me home.  I was supposed to follow up with my PCP on the pain medicine.

So, the next day, I called in sick again and used the new pain medicines.  They didn't help.  By now, my PCP had given me her cell phone number and she and I were texting back and forth.  On Wednesday morning, when things weren't better, she suggested that I go to the ED at one of the two teaching hospitals in our region.  Since my wife and I work in Burlington, I had my wife take me to the ED at the University of Vermont Medical Center.  I ended up spending the entire day there.

The first thing they did was just try to get my pain levels under control.  It took two injections of morphine to establish a baseline level of control.  Four hours later, it took three more injections to keep things under control.  But, the good thing about this hospital vs. the one I visited on Monday is that they wanted to figure out why my pain levels were so much higher.  They did some imaging and found that my tumors had grown significantly since August.  The larger tumors were creating pressure on nerves and that was causing the pain.

Late in the day, the doctor I'd been working with (Dr. Claus - the poor guy must have been tortured his whole life for that name) suggested two options.  The first was that he could take a guess at a prescription that would work going forward and send me home.  Or, I could be admitted and have a pain specialist from the oncology clinic work with me to establish control of the pain.  He offered them to me as almost a 50-50 choice, assuming that I was averse to being admitted.  But, to me it was a no-brainer and I chose to be admitted.  That afternoon, before they could even admit me, I was interviewed by two pain specialists.  They knew about the tumor growth.

By the time I'd been admitted, they had a plan they wanted to try - Oxycontin with oxycodone for breakthrough pain.  I've found out since then that there is a lot of controversy about whether or not Oxycontin really works for the full 12 hours as advertised.  In something like half of all patients, it works for less than 12 hours, and it needs to be supplemented with other pain medications.  So, we started the Oxycontin on Wednesday night and I was able to sleep through the night for the first time in a while.

On Thursday, the doctors seemed quite happy with themselves, having found something that worked so quickly.  I was discharged late Thursday afternoon with 2 new prescriptions.  I was happy that we had a solution.  Until, that is, we reached the pharmacy.  It turned out that Oxycontin isn't covered by my insurance.  I had two options - pay $541 out of pocket or pay for a lesser amount that I could choose.  But, if I chose a lesser amount, the rest of the prescription would be invalid.  I was torn.  I knew that if I didn't fill the prescription, I'd end up back in the hospital.  I felt like it would be justice for my insurance company to have to pay for the re-admission if they refused to pay for the medication.  But, I'm not truly that petty, I didn't want to go back to the hospital, and I wanted the pain to be gone, so I paid the money.

In the end, it turned out that, with prior approval, my insurance company will pay for the brand name Oxycontin, but not the generic.  I've now gotten that prior approval, and my local pharmacy is carrying the brand name just for my needs.  That's one advantage of living in a small town, where the pharmacists know me and my condition well.  They are willing to change their stock just to help my needs.  And, UVMMC turned over my co-pay issue to a social worker.  Through a grant, I got back about 60% of the cost of the prescription.

So, I now had my pain under control.  But, these new pain meds mean that I can't really drive anymore, which has created a new burden for my wife.  She had always been the driver on our commute, but I usually dropped her off in the morning and took the car for the day.  She is now dropping me off, and she needs to come with me on every medical appointment.  I feel bad for the burden on her, but I'm not going to risk driving with pain meds in my system.

So, with the pain under control, I still had two issues to fight.  First, I needed to get treatment re-started.  It's been two months since I found out that the last treatment failed - two months of allowing my tumors to grow without fighting back.  At this point in time, I have to assume that the proton beam therapy is not going to happen, and we need to start a systemic treatment as an alternative.  And, I had to work on my nausea, which had been getting worse by the day.

First, let's talk about treatments.  When I was last at Sloan Kettering, the medical oncologist that I see there had suggested a drug called Eribulin.  It is an older drug that's been around for a while and I think it's often used in breast cancer treatment.  My local medical oncologist had suggested Trabectidin, which is a newer drug that is specific to sarcomas, if not just liposarcoma.

As the prospects for the proton beam therapy dropped, and my symptoms began to increase, I started to rely more and more on my local medical oncologist.  She scheduled me for a CT scan on Wednesday of this week.  That was followed by an appointment yesterday - Thursday.  In the appointment, she said she was fine using either of the drugs, but that she'd gone along with the Sloan Kettering recommendation and scheduled me to start Eribulin immediately.

I had no qualms with that.  I am concerned that Eribulin tends to have more side effects than Trabecticin, but that isn't the most important thing right now.  Getting started with a treatment was the most important thing.  So, I did have a treatment yesterday and I'm now on Eribulin.  It's given in a 21 day cycle, with infusions on days 1 and 8 and a Neulasta injection on day 9.  I will probably end up doing the Neulasta with their OnPro technology - a high-tech patch that goes on your arm at the end of chemo and does the injection automatically 24 hours later.

So, treatment is taken care of for now.

The nausea problem peaked last weekend.  It got to the point where I vomited from the nausea 3 days in a row, and I was barely eating anything.  I was resorting to milk shakes made with Ensure just to get some calories into my system.  Most days, I was able to eat fewer than 1000 calories.  At my appointment yesterday, I found out that my weight has dropped almost 20 pounds since August.

Early this week, the doctor had me greatly increase my dosage of Compazine, an anti-nausea drug that I have a prescription for during chemo.  I was taking it once a day at 5mg.  They had me start taking 10mg every six hours and the nausea now seems to be at bay.  I had a bit of nausea this morning, the day after chemo, but not so bad that I vomited.

Hopefully, the chemo won't increase the nausea beyond manageable levels.

So, that's it.  Pain is under control.  Nausea is under control.  And, I've started a new treatment.  Now, we wait and hope the treatment works.

Tuesday, September 18, 2018

Next steps - the Kobayashi Maru

Since my last post, I've made one more trip to Sloan Kettering in NYC.  To be honest, I don't like how things are going right now.

The surgeon that I saw in early August doesn't really want to operate, and he's one of the more aggressive surgeons out there for liposarcoma.  He will operate when others don't want to operate.  He's the guy that people go to see when their local surgeon doesn't want to do any more surgery.

He sent me to a radiation oncologist instead.  I was mostly disappointed in that visit, because it seemed that the radiation oncologist wasn't really prepared when I got there.  It seemed like he was making stuff up while I was sitting there.

Essentially, he didn't want to do conventional radiation, because the beam of radiation would pass though a spot where my bowel has been re-constructed.  He is worried that the radiation could burn a hole in the bowel, and because of prior radiation, it could be very difficult to get in there and do the surgery to repair the hole in the bowel if it occurred.  It would be an emergency surgery, full of risks.

But, he did have an alternative idea - proton beam radiation.  Proton beam radiation, unlike normal photon beams, can he halted at a particular depth.  So, it was his reasoning that we could make the beam go far enough to reach two tumors, but not go so far that it would damage my bowel.  Of course, he said there were still risks, but he thought that this was the way to go.

He also warned me that proton beam radiation is very expensive and insurance companies tend to fight it as a treatment option.  While I was still at the hospital, he talked briefly to the surgeon and they agreed to take my case to their tumor board to discuss options.  This was on 8/22.  Then, for weeks, I heard nothing.  I thought that perhaps they were fighting my insurance company.  I finally heard from my surgeon on 9/14.  They had finally agreed to a plan.

I have four total tumors right now.  One of them could easily be operated on.  The other 3 are not great candidates for surgery.  So, the plan is to attack those 3 tumors with proton beam radiation and then enroll me in a clinical trial to try an immunotherapy drug to target the 4th tumor after radiation.

They are allegedly working on the insurance approval right now.

I checked my insurance company's web site yesterday, and found nothing about the pre-approval for the radiation.  Perhaps they don't list items until a decision has been made, but it just seems to be taking forever.

While this process drags on, three things have been occurring.  First, the pain I'm dealing with is getting worse.  We increased my oxycodone prescription a couple months ago, and the next time I need to increase the dose, I need to see a pain specialist rather than my primary care doc.  I'm at the limit that VT law allows my PCP to prescribe.  The next step is likely to be something like a morphine pump, something I've been hoping to avoid.

I'm also dealing with increasing fatigue.  I am napping all of the time.  I fall asleep in the car on the way to work.  I fall asleep on the way home.  I fall asleep on the couch as soon as I get home.

Yesterday was all of those things.  I slept on the way to work and on the way home.  We skipped the gym on squat day, a day that I hate to miss, because I was so tired.  As soon as I got home, I fell asleep on the couch.  I woke up about 8:00 and ate a sandwich for dinner.  And then, I fell asleep again.  At 10:00, my wife woke me up to go to bed.  And, at 6:45 this morning, having seemingly slept for most of the past 24 hours, I could barely drag myself out of bed.

Lastly, I have zero appetite.  I never eat breakfast.  I rarely eat lunch, or I eat something very small for lunch.  On the weekends, I never bother to eat breakfast or lunch.  And then at dinner, even with the medical marijuana, I still don't feel hungry.  My weight is gradually decreasing.  I think it's been my fairly regular attendance at the gym that's been stopping it from dropping faster, but if the fatigue starts to mess with my gym attendance, I'm afraid that my weight will plummet.  I'm certainly not skinny.  But, to be honest, I don't want to lose any weight right now.  I need to keep as much muscle mass on my body as possible, to be ready to handle the rigors of radiation and immunotherapy.

For the first time since this ordeal started about 3.5 years ago, I feel like I'm starting to fall behind.  Previously, it felt like we always had answers, another treatment option, I had the gym and my training to focus on, and I had a focus for taking on this disease.  Right now, it feels like I'm starting to lose some of that.

I'm also somewhat depressed by something my employer did to me recently.  I will admit that during my last chemo, I was far from 100%.  I tried hard to keep up, to do a good job, and I was even working up to 60 hours per week during chemo.  But, it wasn't good enough for my employer.

The Friday before Labor Day, my employer presented me with an "offer".  Basically, they were planning to demote me for poor performance, to decrease my salary by 35%, and they asked me to sign a form that admitted I was incompetent at my job.

I spent the weekend trying to chase down an attorney to see what my options were.  What I discovered is that despite my cancer, at-will employment seems to trump the ADA and EEOC laws, and I really had no means to avoid the situation.  Two attorneys suggested that I not sign the form, but I was told that they could impose the job and salary on me at will.  So, I did refuse to sign the form, and the company imposed the new job and new salary on me.  So, now my wife and I are staring at bankruptcy on top of everything else that is going on.

If they had fired me, I would have been eligible for unemployment, I would have filed for bankruptcy immediately, and I would have started the waiting period to collect social security disability insurance.  Instead, they left me with some income, but not enough.  So now, we will struggle for 3-12 months (it's hard to predict how long we can hold out) and then we will have to file for bankruptcy.

Another hope that I was holding onto was that I'd be able to go onto disability insurance when I'd reached the one year mark at work.  That insurance basically pays 2/3 of your salary.  At my old salary, again, we could have gotten by for a while on that level of income.  But, 2/3 of my new salary is now less than half of my old salary, and while we may still take that option, it would again mean bankruptcy.

All in all, I think we've held up pretty well for the past 3.5 years.  If you count my prostate cancer before that and the rare form of melanoma that my wife had, it's been five years of dealing with cancer.  But, we are now approaching the point where we are not going to be able to make it on our own any more.

My daughter is currently doing a semester in Spain.  She sent me a WhatsApp message last night, asking if my wife and I might be interested in meeting her in Spain for a long weekend in Bilbao.  We would love to do that, but it's simply not possible given this turn of events.  I was almost in tears as I read her invitation and thought about how impossible it was.

Oh yeah, two different attorneys have looked at what my employer has done to me.  Both of them described it as the most unethical thing that they've ever seen an employer do.  At the same time, they said that it appeared to be completely legal.

What kind of system do we have in this country where someone's life can just be destroyed because you were unlucky enough to contract a rare cancer?  I know I'm not alone in this situation, but for a while, it seemed like we'd be OK.

Now, I'm left wondering if we are going to be able to afford to eat, or to even feed our pets.

Please don't feel sorry for me.  I've had a great life.  I have an amazing family and support system.  I'll get through this somehow.  I'm sure that many others have been put in worse situations than mine.

But, it's certainly not how I expected that the final years of my life would go down.

Monday, August 13, 2018

What a waste of time and resources

I was at Sloan Kettering last week, getting a CT scan after 3 months of chemotherapy.  This was a rough round of chemo and I dropped 17 pounds in 3 months despite exercising very little.  To be honest, a lot of the lost weight was probably muscle mass.  I am really struggling in the gym these days, from both a strength and an aerobic perspective.  I honestly think my fitness right now might be the worst it's been since 1998.

So, after all of those side effects, at least I knew I'd been taking a chemo that has worked for me in the past and I was optimistic that I'd get good news.  Regretfully, my optimism was unfounded, and the tumors continued to grow right through the chemo.

I have four tumors right now, and three of them grew.  Two of them are in a spot that is tough to operate, because it would require an extensive resection of my liver, and it would require a liver specialist as a second surgeon.  My surgeon was not crazy about that option.

The chemo that I could try next doesn't have a great success rate.  Clinical trials would require me to be in NYC one day every other week - something I can't pull off right now.

But, my surgeon, remembering the good success I had with high dose Image Guided Radiation Therapy (IGRT), suggested we try that again for the two tumors near my liver.  The radiation oncologist agreed that this makes sense, so that is the next treatment for me.

The bad thing is that only 2 of my 4 tumors will be targeted, although one of the tumors that won't be targeted is well differentiated, small and growing very slowly.  But, the radiation will not go after one of the other major tumors, meaning I might need surgery after radiation.

The bosses here at work are being supportive, but I know they aren't really happy.  They would prefer to have me in the office full time rather than being out getting treatments.  For this next treatment, I have a consult with the radiation oncologist next week in NYC, then a day to fit a mold around my body to hold me in place during radiation, and then finally, five straight days of treatment.  I'll need to be out of the office for all of those days, although I hope to work from NYC during the radiation itself.

I'm afraid of what my travel costs are going to be as well.  Finances are pretty tight right now and the cost of a week in NYC, plus the train for 3 trips to the city will be expensive.  I'll do my best to figure it out, but things are going to be tight for a while.

So, after three months of a rough chemo, the news wasn't good.  But, the doctors have a plan and I'm going to listen to them and continue with the treatment.  The side effects from the radiation aren't great, but they are less intense than chemo.  It's mostly nausea and fatigue that I'll have to deal with.

I was looking forward to the arrival of fall and hopefully some rain so I could get out fly fishing again.  I've hardly fished at all this year due to the high temperatures and the drought we've been dealing with, and now, by the time conditions improve, I'll be dealing with the side effects from radiation.

My next scan will be in late November, and that will determine whether or not I can teach skiing this coming winter.

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.

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.