Tuesday, May 23, 2017


This post is really an extension of something I wrote on Facebook yesterday.  Here is the post that I made there:

"Never in a million years would I wish a rare cancer on anyone. But, I have to say that I've seen some of the most generous and kind acts from friends and acquaintances over the past couple years. It's easy these days, especially from a political point of view, to lose faith in each other and in the innate kindness of people. All I can say is that I've seen so much kindness in the past couple of years that I could never repay it all. I'm trying to pay it forward when I can, but this illness has really restored my faith in how we treat each other as fellow humans. Even little gestures can mean a lot; little things that may mean nothing at all to the person who does them can mean the world to me at times. The bigger kindnesses leave me awestruck at times."

So, my daughter had requested to come along to NYC for my next surgery.  I'd like to think that she wants to be there to support me, but in reality, I'm pretty sure she would just love to make her first ever trip to the Big Apple.  And, I'm OK with that.  My kids are 19 (my daughter) and (almost) 24 and they have their own lives, their own goals, their own dreams.  Their lives should not be consumed, as mine has been, by liposarcoma.  I think the same of my wife, but as the spouse, she is stuck with it all.  And, I say that light-heartedly, knowing that she is glad to be by my side most of the time.  On occasion, when the anger escapes from my mouth, her thoughts might be different.

Anyway, my wife mentioned to a co-worker that she'd like to take the kids along on a trip to Sloan Kettering as additional support for me.  That co-worker must have mentioned it to the bosses, because her company and her company's parent company, offered us some money to take the kids along.  The thing is, while they meant well, the amount of money they offered was way less than it costs to take the kids.  But, they meant well and I would never be anything but grateful when someone offers to help.

For everyone to go to the big city, we need to board the dog.  We need four RT train tickets.  Two hotel rooms per night rather than one.  And, at this time of the year, NYC is simply crazy expensive.  All of my overnight trips to NYC for this cancer have come in the November-March time frame, when travel is less expensive.  This is prime season and hotel rates are very high.

People at our gym held a fundraiser for my wife and me late last winter.  The purpose was to help with our travel expenses to Sloan Kettering.  We used about 60% of that money for a series of trips in November, December and January, but we still have $2K left.  So, I told my wife that we'd find a way to make it work and take everyone along.

To be honest, even though I agreed to this, I had (and still have) my concerns.  My company is not doing well financially, and I could lose my job this summer.  This is not exactly an ideal time for me to be looking for a job.  So, we are at risk there.  Our medical debt from the past 4 years or so is staggering.  So, money has been tight.  I bought a new fly rod recently, but unlike in the past, where I could simply do something like that, this time, I sold another of my fly rods to pay for the new one.  We are sort of living like the federal government talks about at times.  Every new expense needs to be offset by some savings somewhere else.

Yet, and this continues to amaze me, things all just kind of fell into place.  I can't explain it, I'm not sure I even want to know, but a grim situation has simply turned around, and it's all working out.

I mentioned to my therapist recently that we wanted to do this and how I didn't want to disappoint my wife and children.  She asked me if I knew about a fund at the University of Vermont Medical Center to help cancer patient with financial issues.  I knew nothing about it, so she gave them my name.  The next day, I had a phone call to talk about things.  And then, they agreed to pay for our train tickets.  All four of them.  No paperwork or anything.  Just a little bit of history, our plans for the trip, and the money gets allocated.

I was really struggling with hotel rooms.  My normal destination, the hostel at the Upper West Side YMCA, was booked solid.  It wasn't a matter of paying full price of $120 for their dorm-like rooms instead of the normal $60 rate I get.  They had no rooms at all.  Most of the hotels that Sloan Kettering works with were full or nearly full.  The best I could find for the rooms we needed (9 total rooms over 6 nights) was close to $3K.  When I had been expecting to pay one quarter of that, this was very disheartening.

I did find that a sister property of one of those listed by Sloan Kettering has cheaper rates.  Not cheap, but cheap enough by NYC standards.  Our rooms for the week would be $2107.  Not nearly as cheap as the YMCA, but not $3K either.  Or, one of the hotels had offered to put all of us into a single suite.  For $4K per night.  We passed on that one.  So, for a price that exceeds my mortgage, I was able to find some rooms for us.  They were crazy expensive to a country boy who lives in VT, but I've been assured that I got a great deal for Manhattan at this time of year.

I mentioned this cost to the social worker I was working with at Sloan Kettering.  She mentioned a patient assistance fund that they have, and told me how to apply.  Only my personal expenses can be reimbursed, but any help would be welcome.  I told her that I thought it wouldn't work.  Our income is high enough that I thought it would be too much.  But, when she asked for our household income number, she insisted we apply.  Our income might exceed the average here in VT, but it's a pittance compared to what it costs to live in NYC.

My wife filled out an extensive form last Thursday.  I remained sure, given our total income per year, that we would be ineligible.  But, they really look at your whole financial picture, including debt, and especially medical debt.

I gave them the completed form on Friday morning.  Monday morning I was informed that I'd been approved for the program.  We talked about what expenses were specific to me - my room, my food, etc.   I had been honest that train tickets were already covered and I didn't try to double-dip on that.  By yesterday afternoon, Sloan Kettering had agreed to give us another $827.

So, we suddenly have well over $2K in new funds - from hospitals and employers.  I had no idea that funds like this existed.  Add in the remaining money from our fundraiser, and we can easily afford to take everyone to the city for a few days.  My wife's birthday is during this trip, and I'm hoping we can get out for a nice dinner on her birthday.  Two days before surgery, this would be a great way to celebrate.

We are going to send the kids home right before my surgery.  My wife has enough to worry about during the surgery itself and the immediate post-surgical recovery.  We decided it would be an additional stress to have to worry about the kids during that time.  But, they get three nights in the city before my surgery.  We have some plans to visit museums, walk a lot, and eat at a few of the nicer (but affordable) restaurants that I've found on my prior trips to the city.  I am going to work remotely for part of the trip, and I think my family has plans to visit the Village, SoHo, Little Italy and Chinatown.  In one day.  I wish I could go along on that day, to be honest.

We are even going to try to get same day tickets to see the Late Show with Stephen Colbert.  My son and I saw a live broadcast of his old show, and people think it would be fun to see him again.

I'm not a religious person.  I'm not a praying person.  I'm not a believer in karma or other unseen reasons that things happen.

Yet, right this moment, I'm amazed at how this has all happened.  An idea was hatched, it was honestly too expensive, and then it all somehow worked out.

Hopefully, good news like this will extend right through my surgery and recovery.

And in the interim, I am full of love and gratitude to the point of giddiness.

The universe can be a cruel place.  I have too many friends with cancer at the moment to not see that cruelty.  And at the same time, there is so much goodness out there that leaves me awestruck.  I'm reminded of some lines early in the movie American Beauty:

Lester Burnham: [narrating] I had always heard your entire life flashes in front of your eyes the second before you die. First of all, that one second isn't a second at all, it stretches on forever, like an ocean of time... For me, it was lying on my back at Boy Scout camp, watching falling stars... And yellow leaves, from the maple trees, that lined our street... Or my grandmother's hands, and the way her skin seemed like paper... And the first time I saw my cousin Tony's brand new Firebird... And Janie... And Janie... And... Carolyn. I guess I could be pretty pissed off about what happened to me... but it's hard to stay mad, when there's so much beauty in the world. Sometimes I feel like I'm seeing it all at once, and it's too much, my heart fills up like a balloon that's about to burst... And then I remember to relax, and stop trying to hold on to it, and then it flows through me like rain and I can't feel anything but gratitude for every single moment of my stupid little life... You have no idea what I'm talking about, I'm sure. But don't worry... you will someday.

While I don't buy into the mysticism that Lester refers to here, I do see beauty in the world.  I don't understand why things work the way they do.  I don't know why I get to be the kid who gets the weird cancer.  But, just like the Facebook post that opened this blog post, or the quote above, I'm amazed by the beauty I see in the world.  Cancer may kill me eventually, and I would never say that getting cancer has been a good thing.

But, I have learned so much from having this disease.  I've learned to see the world in a completely different way.  And, gratitude.  I'm so full of gratitude for the life I've already lived, and for the little things that keep falling into place.  

I'm an unlucky man.  At the same time, I'm a very lucky man..

Monday, May 15, 2017

Sleep Comes Down

If anyone can possibly guess where the title of this post comes from, I'm not sure what the prize should be.  I'd suggest that I could offer my 12" vinyl version of the Psychedelic Furs' song Sleep Comes Down, but I don't want to part with it, to be honest.  And now, I've answered the question.


That's all I do any more.

I slept almost 80 hours last week - almost half of the week.  I had one day where I only slept 8 hours.  Over this past weekend, I slept 29 hours in a 39 hour period.  I did sneak out fly fishing for about 4 hours on Saturday.  It was fairly easy fishing, yet it took so much out of me and I took a 4.5 hour nap to recover from the fishing.

Today is 2 weeks since my last chemo session.  The last time I went 3 weeks without chemo, I couldn't stay awake that third week.  I'm hoping that's not the case this time.  I'm hoping this is the week that I turn the corner and start to see some improvements in my mental and physical capacity.

With the chemo over, and surgery in 24 days, I really want to be in the gym, training as much as makes sense.  I think this will help with my surgical recovery as it has in the past.  So, no matter how tired I feel these coming weeks, I'm going to try hard to get to the gym or get out walking with the dog.  Right this minute, I've done one half-assed CrossFit workout in the last 9 days and nothing else.

Fishing isn't exercise.  Mowing the lawn (from a tractor) is not exercise.  Cooking dinner isn't exercise.  And, napping for 1-6 hours at a time is most certainly not exercise.  I am honestly amazed that anyone can tolerate this chemo and still live anything resembling a normal life.

Regretfully, an acquaintance in CA is just starting this chemo for the same reason that I did it, and I think I've scared her with my stories about fatigue.  I certainly hope things go better for her.  She is doing this in a more traditional method - every 3 weeks rather than 2, and a Neulasta shot between every round.  I hope that gives her the energy to thrive through the next few months.

Otherwise, there is nothing new.

I still can't seem to catch a fish to save my life.

I'm working on my travel plans for my surgery.  Working.  And, napping whenever I get the chance.  I never imagined I would be a person capable of sleeping this much, much less wanting to be asleep this much.

But, this is a different chapter of life and things are just different right now, I suppose.

For now, I will just go with the flow.  I know the fatigue will start to fade soon.  My anemia will resolve.  My other blood test results will start to trend towards normal.

And then, just as I start to feel decent, they are going to cut me open.  But, right now, I have 24 days to get ready for that event, and I plan to do that the best I can.

Thursday, May 11, 2017

Things falling into place - a few rambling thoughts

I got a call from my surgeon Monday night at home.  Yes, that's correct.  A top surgeon, a department chair, a world class specialist from one of the top cancer centers in the world spent Monday doing surgery, and then took the time to call me at home to follow up on my care.

He had finally had a chance to read my latest CT scan.  In his opinion, there is no need to do two more rounds of chemo.  He wants me to heal up - let my immune system recover - and then move to surgery.

We talked for maybe 10 minutes, and at the end of that time, we had selected a surgery date.

I will get to NYC on 6/5, have some pre-op testing done on 6/6 (not a very exciting birthday for my poor wife), and then do surgery on 6/8.  I will probably stay in NYC until the 18th or so.

So, I'm going to have to skip a couple concerts.  I'll get over that.  I have to skip a short fly fishing trip.  I'll get over that as well.  I will miss about a month of trout season.  Oh well.  There are simply priorities in life, and living through cancer is one of them.

My wife's company is talking about sending our entire family to the big city a couple days early.  I'm not sure who would pay what, but all four of us would go, stay in a hotel, enjoy the weekend before the surgery, celebrate my wife's birthday, and then the kids would come home when it got time to deal with the real medical issues.

Over and over through this ordeal, I've been overwhelmed by the generosity of the people in our life.  My wife is really an amazing lady.  Upbeat.  Positive.  Always willing to help others.  And, it gets paid back to her in spades at times.

Currently, my primary care provider is on maternity leave.  I needed to see a primary care provider this week for a minor medical issue related to the cancer.  Not a big deal, but it did involve pain medicine, and unless people are living under a rock, they know that pain meds are a big issue these days, even for cancer patients.

So, I met a new provider today.  She did a full "systems" check.  How is my wife?  How are the kids holding up?  Do I have the support I need?  Is there anything else I need that I'm not getting?  Those kinds of things.  She made me pee in a jar to prove that I'm taking my pain meds and not selling them.  Given that I have scripts for pain meds, medical MJ, and a benzodiazepine, I will easily "fail" this test.  Which, in this case, means I pass.

One of the topics that came up today was the concept of patient vs. caregiver.  With 3 distinct cancer diagnoses between us in the past 3.5 years, we've each gotten to play patient and play caregiver.  Being the patient sucks.  I won't lie about that.  But, to be honest, being the loved one of a person with cancer is even tougher, IMO.  It's really a tough place to be.  You need to take care of yourself.  Get to the gym.  Eat well.  Sleep enough.  Etc.  But, at the same time, your real priorities are with the person who is sick.  And, you can't control it.  You can't change it.  You can't fix it for the patient.

You can be there.  You can support them.  You can love them.  But, you can only do so much, and after that, you feel powerless.  There are forces in charge that you can't control, you have a problem you never wanted, and in a worst case scenario, you are looking at losing your lifelong partner. I don't know how my wife does what she does.  Yet, she never complains. She puts my needs first.  She is a mom to our kids.  A wife.  Maid.  Etc.  It's a role she does pretty well.

I'm pretty much a mess as the patient.  I'm not sure how I'd do as the caregiver in this particular scenario.  I'm just glad that I married so well.

So, we might get a brief weekend as a family in the big city courtesy of my wife's co-workers and the owners of her company.

My biggest goal right now is to live long enough to pay back all the kindness that we've received in the past few years.

And, maybe find some time to catch a few more trout along the way.

Friday, May 5, 2017

Communication Breakdown

Trying to coordinate care between two hospitals has been very challenging for the past 18 months.  Most of the early coordination was done by a local medical oncologist, who had extensive sarcoma expertise.  That doctor has since moved to a different teaching hospital.

But, she promised me that she was leaving me in good hands with a new provider who would be up to speed quickly on my case, and on liposarcoma.  Oddly enough, I still haven't seen him.

Instead, I was shunted off to a different medical oncologist.  She is the person who detected the misread in my CT scans recently, but she's not a sarcoma expert.  She is part time.  And, she's retiring.

I had a treatment this morning - hydration, anti-nausea meds, and TPA to "unblock" my chemo port, which had developed a blood clot.  I was able to talk to my triage nurse, but she told me the doctor was essentially unavailable today and all of next week.

So, I have no idea how things are going with Sloan Kettering.

The current doc helped to create a problem with my pain medications, and I need to get that resolved with a PA who is a back-up to my PCP next week.  I'm not confident that that visit will go well.  "Hi, you don't know me at all, but I had an opiate contract with one of your co-workers.  My pain med needs increased, another doctor helped me to violate my old contract, and now I need a new contract with more pain medicine every month.".  That has "pill seeker" written all over it, but hopefully my diagnosis will outweigh that concern.

So now, I will probably be pushed to the doc I was supposed to be pushed to a couple months ago.  I'm fine with that, but it means starting all over again in some respects.

This means re-establishing communication between that doc and Sloan Kettering.

No one knows if I need my 7th round of chemo a week from Monday.  I might not find out until that day.

I have no idea when I'll meet the new doc.

I'm at a crucial time in my care, with some big decisions coming up.  And, communications are failing badly.

The only way to fix this is to do it myself, I'm afraid.  I need to contact Sloan Kettering.  I need to stay on top of every doctor, every nurse, every caregiver.

For now, at least, I'm not involved in ongoing fights with my insurer.  I'm good on insurance coverage, for this year at least.

But, after yesterday, I'm envisioning a future where I have to fight everyone for the care I need.

And, if you happen to be one of those people who like what the House did yesterday, do me a favor.  Leave me a comment.  Explain why my condition, which has zero known lifestyle causes, should just cause me to be abandoned by the healthcare system.  Explain to me why I'm just unlucky and I get to die.  I must be a bad person, according to a congressman from Alabama (a state where as many as 30% of the citizens have pre-existing conditions).  I'm lucky in that I probably won't have to move from the liberal state where I live.  I pay high taxes here and I'm sure VT will continue to incent their insurers to provide decent coverage for my condition, but also at an exorbitant cost.  My current ACA policy costs me $22K per year, but it's saving my life right now.  But, it only takes one small change and it would be fatal for me.  If I lost the ability to seek treatment at a sarcoma specialty center in NY or MA, there are no sarcoma specialists in my local area.  Being limited to local docs, being denied coverage for a pre-existing condition, or having my rates doubled, tripled, or worse (I've seen estimates that some patients with metastatic cancers can expect to pay $140K annually in premiums and out of pocket expenses with the high risk pool scenario) would be a truly fatal blow to me.  For the record, my cancer is not yet metastatic.  I've had only local recurrences, but I've had multiple recurrences, and eventually, metastasis to my lungs is very likely.

I've spent my adult as a taxpayer paying my fair share.  I don't complain.  I would rather have one person cheat the system, or even have 20 cheat the system, rather than deny a needed benefit to one person who really needs it.  I think most of the civilized world thinks that way.  I pay my taxes with that kind of attitude.

If you disagree, I'd love to hear about it.

Tuesday, May 2, 2017

And, we move on

From Wednesday night through Sunday around lunchtime, I slept 52 hours, according to my FitBit.  Two nights registered at 15 hours.  I even napped during the days.  I was too tired to even work on Friday morning.  The cumulative effect from this chemo is pretty intense.

But, after some intense rest, some time to calm down, and just feeling a bit better, I'm back on the treatment train.  I mentioned to my nurse at chemo yesterday that I was at a point last week where I'd just had enough.  I just felt I couldn't continue with any of this.  She thought about things for a while, and asked if I knew about the counseling services offered by the oncology center.  I am a patient there as well, so I was well aware, but thanked the nurse profusely.  She had thought about an offhand comment that I'd made and tried to create something good out of the situation.  I am grateful for the caring health care personnel that I encounter on a regular basis.

I have also recently run afoul of the "pain medicine police", it appears.  My primary care provider works for a small, local hospital.  Throughout this ordeal, she has mostly done triage type work for me, helping me to see the appropriate providers, managing medications, and worrying about some day to day issues so I can focus on the cancer issues.  This has included pain medication management.

I'm sure there isn't a person in the US who hasn't heard about opiate addiction.  In the cancer world, things tend to be a little bit different.  Control is perhaps a bit less lax than for the general public, especially the backache and toothache pill seekers.  Cancer patients seem to get asked fewer questions when they are in pain and tend to have access to the pain meds they need.  I don't take a lot of pain medication, but I've now had 3 cancer surgeries, a course of radiation, two courses of chemo, and I have some active tumors in my abdomen.  Pain is part of my life.  Medical marijuana helps with the pain, but it's something I can only use at night.  During the day, and after hard workouts, I need some access to pain medications.

So, for a year, my primary care provider has been providing those prescriptions.  But, my PCP is currently on maternity leave.  And recently, I had a change in my pain status that resulted in some more pain.  I mentioned this to my oncologist, and she immediately gave me another prescription.  I mentioned to her that this would violate my opiate contract (yes, I have an opiate contract with my primary provider) because I'm not allowed to get pain medicine from anyone but my primary care provider under the existing contract.  The oncologist asked if there was another way to do it.  I explained that with my PCP on maternity leave, I would have to make an appointment with a provider I didn't know and ask for an increased dose of pain medication, which could easily be denied.  My oncologist answered like this: "I don't require opiate contracts.  I don't count pills.  I want my patients to be safe but I also need them to be comfortable to focus their strength on their treatments."  She offered to take on all of my pain medication management, if I wanted.

But, I decided I'd wait.  I sent an e-mail to my PCP explaining the situation.  And, last Friday, I called the prescription line for my PCP and asked for a refill.  I was open about the other medication that I'd gotten in that request as well.

Apparently, my message triggered a query to the state and they found my other prescription.  No big surprise, given that I'd told them about it.  But, they then called me and told me they couldn't fill my prescription because I'd violated my opiate contract.  The nurse agreed that I'd done everything appropriately, but policies are policies.  I am allowed to visit another provider, sign a new contract and get more medication, if the provider is open to my request.  I told them that I would think about it, but my plan is to simply move pain management to the oncologist.  I think I'm pretty responsible about how I use the medications and I don't like being treated almost like a criminal for having cancer and pain that goes with it.

So, despite a low point last week, things are a bit better right now.  I'm done with my 6th round of chemo.  If I'm lucky, it will be my last, or we could do 1-2 more.  If the final response at the end of chemo is good enough, we will move to surgery.  If not good enough, we may try another medication first, although I'm certainly hoping that won't happen.

And, I'm not ready to give up trying against this beast.  At times, I feel pretty beaten up by the treatments.  And the disease.  I may not win this war, but I also won't be defeated.  I'm going to live life on my own terms for as long as I can.  Besides, there are still lots of CrossFit workouts to be done, and trout to be caught.

Thursday, April 27, 2017

Meltdown Day

I suppose that it's inevitable that there are going to be tough days while on the path that I'm on right now.  I do my best to hide them.  I am trying hard to be a good employee, to train hard through everything, to keep myself in good shape, to take care of things at home, etc.  And sometimes, it all becomes too much.

Yesterday was that day.  Well, one of them.

I don't even know how to describe the day.  First of all, let's start with how I deal with this stuff mentally on a regular basis.

I have medication for pain.  I have medication for anxiety.  I have medication to help with fear and anger related to this stuff (not an anti-depressant; I don't like the side effects of SSRI/SNRI meds).  I have a medication to help me sleep.  I have medication to help me concentrate at work.  And, I have medical marijuana as well.  If I chose to do so, I could live in some sort of altered state all the time right now.  That's not my goal, and I try to use the meds judiciously, to get through each day and my responsibilities, as well as I can.

At the end of the day, I will admit that I often take pain medication and medical MJ as I leave the gym.  The combo of those medicines gets rid of the pain from my surgeries and scar tissue, it relaxes me, it helps me with my non-existent appetite, and it simply lets me forget about some of the worst of this for a while.

I can't say that I'm proud to be relying on crutches like this.  Yet, at the same time, the realities are so overwhelming at times that I can't imagine having no medication at all.

I also see a therapist every other week, a wonderfully compassionate woman who only works with cancer patients.  We talk about anything and everything, but mostly about how I want to interact with other people as I walk this path.  While I would never call myself a Buddhist, there is a lot of Buddhist thought in how I approach all of this, and the therapist and I have some good common ground there.

One of the most interesting things to me in all of this is how infrequently I end up in tears.  It feels like I want to cry all the time, but my body seems to be allergic or something.  Perhaps one of the meds is responsible.  Perhaps it's just some societal "tough guy" thing, where I subconsciously feel I'll look weak if I cry.  I don't know, but I do intend to ask a doctor who I'm seeing next week.  There are honestly times that I think I'd feel better if some more tears were spilled.

So, what happened yesterday?  My legs were sore.  I had bailed on our workout the night before because I was tired.  So, I took some pain medication early in the day.  A small dose that rarely phases me mentally.  Then, I took some medication to help with my concentration and some to help with anxiety.  This is how I tend to work during the day.

I was working on something really, really complex.  And, somewhere, I screwed up and overwrote some code.  I had multiple methods to recover the lost code, but losing it was kind of dumb.  At least I have backup procedures in place.

I finally got my code restored, but realized that I'd spent half a day correcting an error, rather than moving forward.  My stomach was in knots all day long - too much anxiety from making a mistake that I should never have made.

We went to the gym.  It was a hard workout and I'm really, really struggling in the gym right now.  We started with 400 meter runs, and I had to do 200 meter jogs instead.  I just felt like I had nothing and I hated every damned second of the workout.  Everyone at our gym is great about what's going on and very supportive.  Yet, I almost always feel as if they are looking at me as "cancer man", wondering how long I can keep up with this charade.

By the time the workout was over, I'd crossed some sort of line.  I had decided that I didn't want any more treatments.  No more training.  No more surgery.  No more chemo.  No more work.  I was talking about just quitting my job and applying for SSDI, which would financially devastate my family. I'm just tired of this and I want it to be over.  Completely over, and I said that out loud, something I rarely do.  I'm sure I was a bundle of joy to be around for a while.

And then, I took some pain medicine.  I took some medical MJ.  I caught up on e-mail with friends while my wife drove home.  And, I calmed down slowly.

Don't get me wrong.  I am tired of crappy workouts that don't seem to be helping much.  I'm tired of being tired all the time.  I'm tired of doctors.  I've had enough.  But, at the same time, I'm not quite done yet.


I'm not a Catholic, but this feels like my understanding of Purgatory.  I'm not in heaven.  I'm not in hell, although it feels that way at times.  I'm stuck.  I have responsibilities.  A job.  Co-workers who depend on me to be functional.  A family that needs me to bring home a paycheck.  A company that might fail if I had to take a leave of absence.

If I'm completely honest, I would go on SSDI if I could afford it.  This is all simply too hard at the moment.  But, I can't afford it.  It's the path my life has taken and I have to navigate it.

I don't have to like it.  I am allowed to scream "NO" at the loudest volume I have.  I'm allowed to be pissed off, scared, in pain, distressed, etc.  I'm not special or unique here.  People get fatal diseases all the time.  Life itself is a fatal disease.  I had just hoped for a more traditional trajectory in my life, one that involved seeing my kids graduate from college, get married, have children, etc.  Growing old with my wife.  Having that part of my life most likely stolen from me hurts the most.  It hurts for me and I hurt for my wife as well.

Yet, every time I try to think of an alternative ending, I know the odds are very slim for that to happen.  So, I muddle through, I do my best, and sometimes, a day just goes to shit.

Today, I'm working from home and I got to sleep in.  Tonight, I'll take my dog for a walk.  He's an oblivious lunk, unaware of any of what's going on around him.  He loves me unconditionally, something that I think I need to learn how to do myself.

Monday, April 24, 2017

How boring can a weekend get?

I slept 13 hours on Friday night.  Took Saturday as a rest day.  Cooked a bit.

I tried to stay up late on Saturday to watch the Sharks and Warriors in their playoff games.  But, when the Sharks went down 2-0 early in the second period and the Warriors were trailing badly, I couldn't take it anymore and went to bed.  Being primarily a Sharks' fan, I was glad I didn't watch any more.  A season that was so promising at the end of February will forever be remembered as a complete failure.

Sunday morning, my wife and I went to Stowe to ski with a friend.  Thanks to a major disconnect, we waited for 2+ hours, never found our friend, and never skied.

So, I went home and took the dog for a walk instead.  Then, headed out fly fishing and nearly drowned.  OK, I didn't really almost drown, but my expensive waders, which were just fine a few weeks ago, now seem to be full of holes, and I got cold and wet very quickly.  I think I quit fishing after 15 minutes.  Right this minute, I feel like just giving up on fishing, but I'm sure that will all change as soon as I actually hook a fish this year.  As much as I love fishing, I will never be one of those guys willing to work 12 hours in a day for a single fish or even a single strike.  I appreciate the work ethic of people who can do that, but it's just not who I am.  If I go hours without catching a fish, or at least believing I'm going to catch a fish, it gets old very quickly.  Yesterday was very much like that - cold, wet, high water, no signs of life.  Just no fun at all.

After fishing, I went home and just laid down for a while.  I'm just feeling beat up by life right now.  It just seems that nothing has gone well recently.

I ordered some new waders from Patagonia this morning.  They have a lifetime warranty.  I told my wife that the phrase lifetime warranty meant a lot more to me before I ever heard the word liposarcoma.

The one thing that makes me happy right now is that I have zero medical appointments this week.  It seems it's been months since that happened.

I do need to get in touch with Sloan Kettering this week.  I need to know if we are going to end chemo after next Monday, and if so, do I need an appointment in NYC as a pre-surgical follow-up.  Or, are we going to go for the full 8 rounds, which means chemo until the end of May?  Either way, I need a break right about now.

Sometimes, I can stay positive in the middle of this giant shitstorm.  This past week just hasn't been that way.  I'm easily at the lowest point I've been since I first heard the word liposarcoma, and I need something to change.

Somehow, I need to find a way to train in the gym this week, and if the past weeks off of chemo are any indication, it's going to be a tough week.

Friday, April 21, 2017

Quick Hit

Monday - Chemo and CrossFit
Tuesday - CrossFit
Wednesday - Tough CrossFit
Thursday - Worked from home and walked the dog
Friday - I'm in Love (with some CrossFit later)

Today (Friday) is the 58th birthday of the lead singer of the Cure, Robert Smith.

Tuesday, April 18, 2017

Listening to what I said I was going to do

Last week, I wrote about adjustments I've needed to make to my training as I get further into my chemo.  And, after listening to myself for a few days, things are working out so far.  Last week, I did CF on Monday, Wednesday and Friday.  On Friday, I scaled the workout a lot because I was tired, but I got through it.

Saturday, I had a busy morning, but I hoped to fish or walk the dog later in the day.  To be honest, I slept in to start the day.  Then, went to the farmer's market, got some other groceries, got some dog food, and came home to put everything away.  Then, I took a nap.

I woke up from my nap about 4;30 and decided that walking the dog was more important than fishing.  The rivers were high and cold anyway.  So, I put the leash on the dog and headed out, only to discover that it had just started raining.  Rhodesian Ridgebacks hate rain.  Well, most of them do, mine included.  So, Saturday became a rest day.

On Sunday, I had family coming over for dinner, and I did sleep in again, but I had time for my wife and I to get out with the dog for a while.  Not a super long walk - just short of an hour - but it was good for everyone involved.

Then, I spent the rest of the day cooking.  I guess I will always wonder how the magnum of 2013 Bourgogne Rouge from Montanet-Thoden I opened for dinner tasted.  With chemo scheduled for Monday, I didn't have any of the wines that we opened, although I was very curious about the red wine and it was my only bottle.

On Monday, chemo went just fine.  I got some time with my medical oncologist and we talked a little bit about her conversation with Sloan Kettering, and we talked a bit about pain control.  She wrote me a new prescription for pain medication and offered to take over all of my pain meds from my primary care provider if I would prefer to do things that way.

I think that my pain medicine is a pain (pun intended) for my primary control provider.  She is a mid-level provider, so her prescriptions for opiates are certainly scrutinized by her supervising provider.  And, I'm an unusual patient for her - way more complex than the average patient seen by a PA.  I consider her to be more qualified than a typical PA, mostly because she also has a Ph.D. in the nursing field, and I like her alot, but it might be easier for her if I move my pain management to my oncologist.  So, I'll think about that.

A few hours after chemo, I was in the gym and feeling pretty good.  I had my best workout in the past couple weeks too.  My squats were the same as the last few Mondays, but they felt pretty easy compared to the past couple weeks.  My wife was training behind me and commented that my squat depth was very good (for me).  Part of this was that I was lifting enough weight to push myself down deep, but not so much that I was afraid I'd get stuck in the bottom, so I was able to work through the whole range of motion pretty well.

The main workout was rope jumping, air squats and power cleans.  I modified the number of reps on each, and got through the workout better than expected, in about 7:25.  I'm glad I scaled a bit, but I probably could have done a bit more.

Today is my last day for this cycle taking 8 mg of dexamethasone per day, so I'm guessing I'll feel good enough to do CF again tonight.  My primary goal right now is to get 4 CF workouts in the next 9 work days.  If I can do that, I'll end up with 10 CF workouts in the 20 business days in April.  All things considered, I'd consider that to be a pretty decent month.  Not quite as good as the previous three months, but all things considered, I will be happy if I pull it off.

Friday, April 14, 2017

Tired of being tired

I don't know which is worse these days.  Being tired all the time, or having to listen to me complain about being tired all the time.

My wife has been an absolute saint recently.  Every time she asks me how I'm doing, the answer is the same: "Tired".  Yet, she never complains about this answer, she encourages me to rest when I can, and supports me whether I choose to train or rest or just simply sleep.

I was hoping that this week off of chemo would have me feeling better and training more.  Instead, I think things have been even worse than the past few weeks.  And, I think my wife has figured out why.

It's been odd to me that my training is going better during chemo weeks than during the week after chemo.  It just seems to me that I should recover somewhat from the chemo, and the second week should be better.

But, I think the answer lies in one of my medications - dexamethasone.  It's a steroid that I take the entire week that I get chemo.  Dex starts on Sunday.  Chemo is Monday.  After three days, I taper a bit.  And then, later in the week, as I get some IV hydration and some anti-nausea meds, they push the dose up again temporarily.  And then, I taper off the medicine for the week after chemo.

So, I really think that the dex is creating the illusion that I'm not exhausted, and it's letting me work out during chemo weeks.

To be honest, I'm drained so much right now that my legs actually ache when I'm sitting in a chair doing nothing.  Pain medicine takes the intense ache away, but not the fatigue.  Yesterday, I was so tired that I walked fewer than 1500 steps all day.  My plan was to go for a walk after work.  My wife suggested that we drive home and walk the dog.  I argued a bit, but ultimately agreed.  I didn't argue because I didn't want to walk the dog.  I love going out for walks with the dog and my wife.  I just knew that I was tired enough that I would fall asleep on the drive home and then be too tired to walk with my wife and the dog.  And, that's exactly what happened.

I slept on the way home.  Took another nap at home.  Cooked dinner (reheated leftovers, to be honest).  Watched some TV.  And, went to bed.

Some Pink Floyd lyrics come to mind:

I gotta admit that I'm a little bit confused
Sometimes it seems to me as if I'm just being used
Gotta stay awake, gotta try and shake off this creeping malaise
If I don't stand my own ground, how can I find my way out of this maze?

I will pretend that earlier in this song that Pink Floyd didn't talk about an old man dying of cancer.  That's not the part I was thinking about.

So, how can I find my way out of this maze?

For now, I am trying the following:

  • Take advantage of the dex.  Exercise during chemo weeks when I'm feeling better.
  • Modify the CrossFit workouts so that I can get through them without making things worse.  I'm not making any apologies for scaling the workouts.  I'm doing what I can.
  • In my non-chemo weeks, do my best to do CF every other day.  If I can go every other day, even at a lower level of effort, that should be enough to maintain some level of fitness.
  • Take advantage of spring weather and walk as much as possible.  This can be hard when my legs ache so much, but I have to make the effort.
  • Listen to my body.  Last night, sleep won over a walk.  I simply need to accept that and move on.  There is no sense beating myself up over something I can't control.
  • Know that things will get better as chemo winds down.
  • Know that every workout I do now will make my recovery from surgery go that much better.
  • Focus on the little things now, knowing that the little things will add up to success in the big picture.
During my chemo a year ago, I was never this tired.  I honestly assumed this chemo was going to be easier, not harder.  My doctors have made it clear that this is a tough chemo and they think I'm doing great.  It's only by my own warped standards that I'm struggling.

But, I will press on, train when I can, and appreciate those days that I feel good enough to train.

Wednesday, April 12, 2017

Waiting for updates

I was hopeful that my local docs would get to talk to Sloan Kettering yesterday and confirm our path forward today.  Regretfully, I haven't heard anything yet from them.  But, if MSKCC needed time to read the scans rather than the reports (and I hope that's what they are doing), it might take a couple extra days for that to happen.

I'm just hopeful that we don't have any major changes in our path going forward.  I'm not crazy about the path I'm on, due to the side effects of the chemo, but at least it's well defined, it's more than half over, and I have some level of confidence that we are moving in the right direction.

Starting over with a new treatment regimen would be depressing, to be honest.

On the training front, I'm still struggling a bit.

I rested last week on Thursday through Sunday.  I fished a bit on Sunday, but not enough to count as exercise.  I walked a couple miles at lunch on Monday and Tuesday, but again, not really exercise.

I did CrossFit Monday night, and it was a struggle.  My right hamstring didn't like the squats I did at all, and I kept the weight the same as the past 5 weeks.  No increase, no decrease.  I wish I was more adapted at this point in time.

But, every time I go in for chemo, my weight is down a bit.  I'm sure I'm not losing just body fat.  Some of it is muscle.  It's not a huge weight loss, but 10 pounds in 6 weeks is non-trivial.  So, this might be causing me some strength problems in the gym.

Last night, I did the warm-up, and I could feel that it just wasn't there.  My wife also happens to have a slight knee injury right now, so we both bailed after the warm-up last night.

But, we will try again tonight.

My docs are still tweaking a few meds, trying to reduce my overall side effect burden.  The latest is a medication that will help me sleep a bit better.  The steroids that I take near chemo really mess with sleep.  I have one med that helps with the insomnia, but I also use that drug for nausea control.  We decided that I should use that drug more during the day for nausea control, and we added something new to take at night for sleep.

It was quite effective last night.  I slept like a baby and struggled to wake up this morning.  I think I'll try a smaller dose tonight.

If nothing changes in the next few days, I will resume chemo on Monday.  Hopefully, I can get in a few extra workouts this week, if the fatigue settles down a bit.

And, with spring really here (finally!), I'm hoping to get in some walks with the dog this weekend.  He and I both need some walking miles.

Tuesday, April 11, 2017

How did those scans go?

What a mess yesterday was.  But, before I get into that, I had an error in my last posting.  I do have scans from 1/31, just before I was scheduled for surgery.  And, I have scans from the first week of November.  And, I got a scan last week.  For some reason, I had forgotten about the scan on 1/31, but my wife remembered the fact that I'd had it.

Yesterday morning, I found a scan report in the patient portal as I was on my way to chemo (my wife was driving).  The changes were not positive at all, and it was clear the current chemo isn't working.  I sent the following to an online liposarcoma group that I am part of:

"I'm on my way to the hospital for chemo, which I'm sure will be cancelled. I have the CT report.

Three of four tumors have grown and the fourth likely only shrank because of previous radiation, not the chemo.

It sounds like 2 of the tumors are trying to invade the colon.

Lungs are still clear. I'll find out more from the doctor this morning.

Clearly gem/tax has failed. Not sure what will be next."

I got to the hospital and checked in.  I told them that they probably didn't need to access my chemo port or do any blood work as I registered, and asked them to confirm this with the doc.  They were able to do so.  My heart sank a bit more.  The doc knew the chemo wasn't working as well.

After killing some time with coffee - the time I'd normally be in the lab, it was my time to see the doc.  Only, it was unusual that they didn't send the resident in right away.  I really like the resident. She is smart and energetic and no-nonsense.  She gets right to the point.  And now, I expected, with bad news, they were making the doc come in first.

Finally, the doctor poked her head into the room.  She told me there was a delay and a bit of chaos because they had accidentally compared my November CT scan to my new scan, and the report I had was invalid.  They were working on a new report.

At this point, I didn't know whether to be furious or relieved.  Or both.  I still didn't know if the report would be better, but my big concern about comparing to an invalid report had happened and the hospital had released that report to me, with a typo clearly showing it was a comparison to the January report.  And yet, that's not what it was at all.  This is a terrible mistake to make, and it's even worse to release the erroneous report to the patient.

Finally, the doc made it back into the room, and we went though the report finding by finding by finding.

The biggest tumor, the one irradiated in September, shrunk some more.  It appears to be dead.  There are some changes to the liver where the tumor and liver are touching, but everyone agrees it's from the radiation and not a spread of the cancer.  That tumor still needs to come out.

The second biggest tumor has shrunk measurably.  It is adjacent to the colon and may require some resection to remove, but it's shrinking.

The next biggest tumor didn't really change size.  But, the tumor density changed and the word necrotic was used to describe the tissue.

Only the 4th tumor was worrisome.  It is touching the colon and it did measurably grow since the last scan.

Lastly, there are no new tumors.  None at all.  So, minimal growth in one tumor.  Regression in most.  Nothing new.  In reality, that's all pretty good.

In summary, the oncologist said that my disease is at least stable, and possibly regressing.  She said that the one tumor may simply need another shot or two of chemo and it will also turn around.  She believes the chemo is working, although it's not a super-strong response like I had with the previous chemo.

She said that, in total, with the disease state, my health, how I'm tolerating the chemo and still training, and my lack of complications with a very tough chemo, she said she'd grade my progress as an "A".  I find that a bit optimistic, to be honest.  To me, progress is against the disease, and that seems to be a tie or perhaps a slight lead for me at the moment.  Not a slam dunk.  Not an "A".

So, she gave me the week off of chemo.  Said I should let my body recover a bit.  Said that 8 rounds is very aggressive and we might want to stop at 6 or 7.  Said she will talk to Sloan Kettering today to get concurrence from them.  She thinks we are on the road to surgery and hopes they concur.  Chemo starts again next Monday, barring any disagreements from Sloan Kettering.  And, perhaps my surgery will be a bit earlier than I had planned for, but if we can simply get to surgery right now, I'll be thrilled.

Friday, April 7, 2017

And now, I wait

I had my CT scan done yesterday.  The purpose of the CT scan was to look at the tumors since we started chemo, and to see how they are responding to the treatments.

In theory, this should be simple.  If the tumors have shrunk, I continue with chemo on Monday as scheduled.  If the tumors are larger, we look for another treatment.  If they are basically unchanged, I'm not sure what we will do.

But, the calendar is a confounder here.  I had my previous scan on election day - a day that will live in infamy for many reasons.  I was scheduled to have surgery in January, but two new tumors were found on the election day scan at the last minute.  That is, they were on the scan in November, but not found (small size) until January.  So, they canceled the surgery and sent me to chemo instead.  I assume those 2 tumors grew somewhat in those 2 months.

So, what if those tumors from election day grew somewhat until early January, and the chemo has been working since then?  It's possible the tumors will actually show up as bigger than in November, but the chemo might be working.  How do we determine if that is true?

If the tumors are smaller, it's easy.  But, if they are slightly bigger or the same size, we can't rule out that growth happened from early November until early January, and it's since been arrested by the chemo.  I honestly wish we'd done another CT scan at the start of chemo to have a better baseline.  Yes, my body has been subjected to a lot of radiation.  And, to that end, I think one more CT scan would have had more value than not doing it.  Radiation is not my biggest opponent when I have tumors growing in my abdomen.

So, I have to hope we get a definitive answer here, and not something that indicates the chemo "might" be working.  If it's working, I want to stick with it.  I hate it, but if it's working, I'd be stupid to change paths.

If it's clearly not working, we have to change to something else very quickly to try to arrest any ongoing growth.

And, if it's in the grey area, who knows what we will do?

Since my medical oncologist has left UVM Medical Center, I feel like coordination and communication (both internally at UVM and between UVM and Sloan Kettering) have taken a hit.  I'm not happy with the way info is being passed around, the way decisions are being made, with the doctors that I'm seeing (I'm seeing different doctors than I was told that I'd be seeing), and the complete lack of communication with MSKCC.

I think that it's likely time for me to step up, be louder and more demanding, and make sure the right people are involved in these decisions.  It's not enough to "like" the doctor.  I need a scientist who understands a lot of stuff that I don't understand, and I need that person to understand math, treatment options, and likely outcomes, rather than making me feel good during an appointment.

There comes a time in treatment where we have to be our own best advocates and that time is now.

I'm guessing that after I get the results (either later today or Monday), I am going to make a trip to MSKCC to discuss the results.  I need that half of my team in on this process.  I need to be sure that everyone is considering all of the options, and that everyone understands the implications of the 2-month treatment delay.

If I won't fight for myself, I can't really expect the other actors to do it all for me.

So, for now, I wait for the report.  And, after I have the report, I have a lot of people to coordinate with, so we know that we are doing the right thing at the right time for the right reason.

If someone was buying my company's software, they should have that same expectation of service, accuracy, and enthusiastic support from our side.  I need the same from my doctors right now.

Wednesday, April 5, 2017

Side effects

I have been dealing with some very interesting side effects from the chemo recently.

I've had a few nights where I've awakened with serious chills and needed another blanket to warm up.  I usually end up taking some Tylenol when this happens, just in case a fever is in the offing.  If I develop a fever, I have to go to the emergency room, and I'm hoping to avoid that.

I've also been waking up at night very confused, with some odd mental issues going on.  It's like I get caught in a dream, but waking up doesn't end the dream.  The dream continues while I'm awake, and honestly, it plays havoc with my brain.

Last night, I woke  up about 2:30 a.m.  I was cold.  My wife generously got me another blanket.  I was also somewhat congested, and my mouth breathing had created a seriously dry mouth.  But, for some reason, I was dreaming that the way I drank the water I keep on my nightstand was affecting my breathing.  It's kind of fuzzy now, but it had to do with how I picked up the water bottle and held onto the bottle.  If I approached it from one direction, I was convinced it would affect my breathing adversely.  In reality, no matter what I did, I was stuffed up, so there was simply nothing to what I was thinking.

I do have a bit of a phobia about  being congested and being able to breathe correctly.  The thing that normally helps is a bit of an anti-anxiety drug.  That drug also helps me to get back to sleep, so I took it last night.  And then, for an hour, I tossed and turned, convinced that I was going to suffocate somehow.  It was completely irrational, but also beyond my ability to control.

Finally, I headed to the couch so I would bother my wife less.  I turned on the TV.  And, I then fell asleep pretty quickly.  So, I ended up with less sleep than I might have liked, but I survived the whole incident.

These types of things seem to be happening more and more as the chemo continues.  I think it's just a cumulative effect from the chemo and I just need to ride it out.  But, it's disconcerting at times.  And the fear that I feel in these situations is very real.  It makes me wonder how I'll handle an event where my breathing really is compromised to some extent.

Last night reminded me of an incident in the hospital about 18 months ago.  I'd just had my first liposarcoma surgery and I was an inpatient for 5 days or so.  It was college football season and I was watching Penn State play Rutgers.  I was also on some heavy duty pain meds.  Early in the game, I started to become "aware" that the game wasn't as it seemed.  Gradually, it dawned on me that the game had 2 scores.  There was the score on the scoreboard, which everyone could see.  And, there was a second "secret" score.  To win the game, I became convinced that you had to win on both scoreboards.  So, I watched the game, looking for signs that Penn State was winning on the second, invisible scoreboard.

Penn State did get credit for the win, so I suppose they won that second scoreboard as well.  Even today, through that morphine haze, I clearly remember my confusion.  My wife still doesn't understand when I try to explain it to her.  And the next morning, when I woke up, I realized fully that it had been absurd.

But, it remains disconcerting.  In a period of time where I'm using some anti-anxiety medicine, medical cannabis, and some pain medication, I suppose these kinds of things will happen.  But, I wish the chemo would play games only with my body and not my brain as well.

My "normal" just doesn't feel so normal any more these days.

Monday, April 3, 2017

Second post of the day - quick hit

For the past few weeks, my left kidney has been operating at less than 100%.  There hasn't been any clear reason for it, but my serum creatinine levels have been increasing and my eGFR levels have been decreasing, indicating some sort of damage to my one remaining kidney.

So, Friday, while I was getting some hydration and some anti-nausea medication, the oncologist wanted to do another creatinine test and also an ultrasound of my kidney.

So far, my tumors have all been on the right side of my abdomen, but a new tumor on the left kidney would be disastrous, to be honest.

I found out Friday that my creatinine was back to a normal level.  And, the nurse just called and told me the ultrasound was normal.  They don't know what was going on or why, but the problem seems to be resolved.  That is one piece of worry removed from my mind.

Later this week, I still have a CT scan to see if the chemo is working.  That is a very important test, but it's nice to have this other problem go away.

Back to work...

Finding that line - the one I don't want cross

Last week was an interesting week.  I learned a lot about myself, my treatments, my goals, and my limitations.  Regretfully, it wasn't all what I wanted to learn, but what's the point of so-called learning if it merely reinforces your preconceived notions.

I did cut down on the intensity of my workouts last week.  And, I managed to train 5 times - way better than the week before.

For people who don't know, a CrossFit workout is usually based on segments.  First, you get there and warm up on your own.  Maybe it's foam rolling, lacrosse ball work, stretching, anything to help heal your body before the abuse starts.

Next, we have a group warm-up.  This is targeted to the work we will be doing that day.

After the warm-up, at our box at least, we usually have a strength training segment.  Sometimes, we skip this and do a long metabolic conditioning (MetCon) workout instead, but our gym does lots of strength work.

Then comes the MetCon - 5-20 minutes usually - of high intensity work.

And then, some cooldown work, some extra training if warranted, or just some socializing about how evil the coach is.

Monday was squats.  I simply dropped the weights from the previous Monday and got through things OK.  The MetCon (Monday MetCons have been very burpee-intensive recently and I suck at burpees, but it's good practice, to be honest) was tough, but my new approach to the MetCons is a steady effort.  I had just done chemo on Monday, and my aerobic capacity is seriously affected by the chemo, so I've been trying to adopt a steady, controlled effort in the MetCons.

Tuesday was some Olympic lifting followed by rope jumping and banded pull-ups.

Wednesday was some pressing work, followed by push-ups, kettlebell swings and box step-ups (the workout said box jumps, but again, I conceded to my body's limits).

Thursday was a rest day.

Friday, we started with split lunges and good mornings.  To be honest, I was exhausted for this one and I did it pretty easy.  But, I was there and I got in some good work.  Even lightweight good mornings took a lot out of me.  Then, a little "chipper" of rowing, lightweight snatches, and push-ups.  This was supposed to take 8-10 minutes max and it took me 13+ minutes, so I should have scaled a bit more.

Saturday was a rest day.  Sunday I skied and despite feeling tired, I got into some good expert terrain on some sweet, soft snow.

Yes, some people would claim this week shows I've learned nothing.  But, in reality, I dialed things back.  I slept a lot.  I made some dietary changes recommended by my doctors.  And, most importantly, I had fun.

Today, I'm tired.  Tonight's workout is very similar to last Monday - squats, burpees, rowing, etc.  I will do the workout, but I might lift lighter than last Monday.  That's just part of the game now.  Do what I can.  Give up as little as possible.  Make some gains when I can.  Have fun.  Show up.  And, rest when necessary.

Later this week, I have a CT scan to see how my current chemo regimen is working.  If the tumors have shrunk at all, we will continue with this chemo.  If they've grown, we will consider an alternative treatment.  If things are steady, I'm not sure what will happen.  I should be terrified about this scan and the results.  The odds are not in my favor, to be honest.  This chemo works just barely 30% of the time for what I'm dealing with.  But, I can't control it, so I'm not going to worry about it.

Life goes on and I intend to just roll right along with it.

Plus, trout season starts on Saturday.  Even though we have a huge amount of rain, plus some snow, in the forecast this week, I hope to be out there chasing trout on Saturday.

Life is good.

Thursday, March 30, 2017

Another Old Race Report - Laurel Highlands Ultra

2003 Laurel Highlands Ultra Race Report

The Laurel Highlands trail race is a 70.5 mile race in southwestern PA.  It travels northeast along the entire length of the Laurel Highlands trail, a trail whose every mile is marked by small cement markers shaped somewhat like mini Washington Monuments.  The race award is a wooden replica of the mile markers.

A year ago, my buddy Joe did this race in its relay format.  Relay teams can have from 2 to 5 members, and Joe’s team was a 2-person team.  Joe loved the race and talked about doing it on his own this year.  My schedule is usually tight in June, but due to doing a September 100 this year, I found myself with time to squeeze this race in.  Joe and I both signed up months ago and discussed the race by e-mail for months.

We’d been warned repeatedly that it’s a tough trail and the race is more like a 100 than a 50 because of the difficult nature of the trail.  My per-mile pace ended up being the slowest I’ve ever run in a race other than a 100.

So, on Saturday morning, June 14th, as soon as it was light enough to run without lights, we were off.  There were just over 50 people doing the ultra and perhaps a dozen or so relay teams.  The course is divided into five major segments of approximately 19, 13, 14, 11, and 13 miles.  The first segment is easily the most difficult and it was a tough way to start the day.

We did half a mile through a park to the trail and then immediately headed up.  We started at about 1200 feet and the trail peaks in the 2700-2800 range.  By mile 3, we’d done a major ascent followed by a major descent.  I had been thinking about shooting for four hours for this first segment, but decided to focus on an easy effort rather than time after seeing the course.  This paid off later in the day.  Joe, meanwhile, had left me behind after half a mile or so.  I wouldn’t see him for a long, long time.

Soon, we started the biggest ascent on the course, climbing to about 2600 feet just past mile seven.  By mile 10, we’d climbed 3000 feet.  By the 19 mile aid station, it was 4000 feet.

I had my dad along crewing for me.  He’s going to crew for me at Wasatch and he’d never been to an ultra before.  Because he lives in PA, this was a great opportunity for him to see a race and learn a little about crewing.  Plus, I could use the help.

I first saw him at 11 miles and was glad he was there.  My shoes were giving me problems and I needed to change to protect a hot spot that was developing.  I next saw him at 19 miles and there I needed to tape the hot spot.  He was more concerned than I was about my feet.  I’m used to dealing with these sorts of things, but I could hear the concern in his voice as he asked me about my feet later.

As I left the aid station, I saw my first runners in hours.  This is a small race and the field spreads out quickly.  I passed three people from 19-22.  Two of them would pass me back; one more than once, but I would always return the favor.  At mile 22, I saw a runner in front of me suddenly sit down.  He told me he was “crashing hard.”  I offered him food and electrolytes, but he mostly seemed like he wanted to just sit down and be left alone, so I took off. 

The running through here got easier but there were still some significant climbs.  Overall, my altimeter registered just over 10000 feet of climbing and descending with 17 climbs that counted as “laps” on the altimeter.  A climb only needs to be about 150 vertical feet to show up as a lap, but a 150 foot climb and a 1500 foot climb each show up as one “lap”.

I was averaging about 4 miles per hour overall, walking the ups, the steep downs and the tougher sections of the trail.  Overall, I may have walked 50 or so of the 70 miles.  My goal was to make 4 mph for 10 hours and then slow down as little as possible after that.  Before the race, I’d thought that making the old cut-off of 18 hours would be possible.  After just a few hours on the course, I told my dad that I was estimating 20 hours as my finishing time.  I’d end up pretty close on that one.

Around mile 26 or so, near a ski area, it started to rain.  Easy at first and then harder.  I found my dad just past the official aid station.  He told me that Joe was about 25 minutes ahead and running well.  I was happy for my friend to be having such a good day in his first attempt beyond 50 miles.

I got to the 32 mile aid station in about 8:20 or so and was surprised to see that my dad wasn’t there.  I grabbed aid station food and Powerade instead of Gu and Succeed and headed out quickly.  Before I left the aid station, I told the volunteers that when a guy wearing a cowboy hat and an orange shirt turned up, they should tell him he was in trouble.

Soon, I was starting the 35th mile and I’d be halfway there.  The mile took forever, it seemed.  This mile spawned a thought in my head and I was soon compiling a list of “Miles from Hell”.  The list ended up including 35, 39, 44, 50, 65 and 69 by the time the race was over.  I hit the halfway point in 9:15 and my estimate of 20 hours still seemed plausible.

After passing mile 35, the terrain got easier and the weather worsened.  The mud from the first rain shower had mostly dried and the footing was better.  I had a couple great miles into the aid station at mile 38, passing three runners in the couple miles before the aid station.  One runner pretty much jumped out of his skin as I startled him while passing.  I think people were very much expecting to be alone out there and another runner passing was a surprise.

Suddenly, the skies opened up.  It was raining hard.  Just as I was thinking that this was the hardest rain I’d seen in a while, it started raining harder.  I found my dad at the aid station and he apologized for missing the previous station.  He’d gotten lost and arrived minutes after I left.  The rain led to some chaos that would cause some problems later.  I got out quickly and started a nasty, muddy descent.  Suddenly, the rain ended and we spent a few miles on nice easy trails.  Until mile 44.  That serpentine mile wound through jungle-like foliage up, down, up, down and around.  I thought it would never end.  But of course, it did, and suddenly, I was at the mile 46 aid station.

I grabbed my lights, knowing that it would probably get dark before I made the next aid station at 57.  I also wanted to take extra Gu and Succeed here in case I got nauseous as the miles accumulated a common problem for me.  Where’s the food bag?  It wasn’t there.  All of my food and Gu were gone.  They’d apparently been left behind at the mile 38 aid station in the rain.  My dad hadn’t gotten any water for the Succeed.  I could tell that my dad felt bad and I didn’t want to make him feel worse.  I did make a comment before I realized what had happened that the one thing that I absolutely needed was the Gu and now I didn’t have it.

I crossed the highway to the main aid station, which was off limits to crews.  They offered me some Red Bull.  No thanks.  I went with Powerade, fig newtons, salted potatoes, and hit the trail.  The next couple miles were mentally tough.  I had a limited amount of food to get through 11 miles and I was worried.  I had some Pringles, about 5 fig newtons, and one precious Gu.  I rationed them carefully and was thrilled to find that the unmanned aid station at 52 had Gatorade.  Normally, I wouldn’t touch Gatorade in an ultra, but at this point, it provided calories.  I pressed on.

At about mile 55, I pulled out my LED light.  Twenty minutes later, I added my halogen lamp as well.  I pulled into the mile 57 aid station at about 9:30 or so.  I heard a familiar voice.  Joe was there.  When he saw me arrive, he got out fast.

My dad had some good news for me.  He’d scrounged a few Gus from other runners and a protein bar.  I took the Gus and the burger that he’d gotten for me and passed on the protein bar.  I grabbed extra batteries for my halogen lamp, re-filled my hydration pack, grabbed a turkey sandwich and set out for the last 13 miles. By now, I was simply power-hiking.  I ran a few more short stretches but fast walking was the norm.

I needed to average 18 minute miles to break 20 hours.  It was going to be tough. 

I caught Joe about mile 57 and stayed with him for about ¾ of a mile before passing.  I made one pit stop and he re-passed me briefly, before I moved past again.  At about mile 60.5, we went out on a dirt road for about a mile and half.  Here, I thought, I can make up some time.  But, it was mostly uphill and I barely held my pace.  At the top was our final aid station.  I had a quick bowl of soup and hit the trail.  Like I’d done at least 3 times earlier, I tried to leave the aid station going the wrong direction, but the guy manning the station straightened me out quickly.

I hit mile 62 two minutes off pace for 20 hours.  I tried to make it up in mile 63, a fairly easy downhill mile.  I lost another minute.  Then two minutes in mile 64.  Twenty hours was slipping away.  But, I stayed focused on getting to the finish.  I was in my last two hours.  One foot.  Then another.  Repeat.  Mile 65 was tricky and I had to be careful to make a few correct turns.  The next mile was easy. 

When do we start the descent? 

We needed to drop about 1300 or so feet to get off the ridge we’d been following all day.  I’d been hoping it would be over 6 long easy miles, but at mile 67, we were still way up there.  I was caught off guard by the sudden appearance of red lights in the distance through the trees.  It turned out to be radio towers.  Then, under some crackling power lines.  Now we were going down.  Mile 69 was all down.  There it was – the mile 69 marker.  One to go.  It was an easy mile but through a labyrinth of trails, some marked with glow sticks and others that left me searching for the omnipresent yellow trail blazes. 

Lights in the distance.  Voices.  I was done.  I made it in 20:16.

This is one tough race, truly 70 miles of technical trails.  Unique in distance.  It’s a beautiful trail, but the view doesn’t change very much.  You’ve got to watch your step all day long.  Great aid stations.  And, the 22 hour time limit makes this race much more accessible to the middle and back of the pack runners than the old 18 hour limit did.  It’s well worth the trip to run this one.

Wednesday, March 29, 2017

A throwback race report: 2004 Hardrock 100

I had a version of this report full of pictures, but the file seems to be missing.  So, this is the text only version:

Hardrock 100 Race Report – 2004

In December of 2003, I was disappointed to lose the lottery for the Western States 100 race.  I’d missed the 2002 Western States race after surgery to repair a torn ACL.  I’d worked hard in my rehab and had finished the 2003 Wasatch Front 100 miler in 33:44:45.  I was hoping that I’d get another shot at Western States in 2004, a race I’d never run.

Many runners on the internet ultra list were also disappointed about not getting into Western States.  Some of the comments seemed so negative that I realized I’d fallen into the wrong mindset.  I couldn’t control the lottery, so why worry about it.  Perhaps the closed door at Western States meant another opportunity elsewhere.  But where?

Besides Western States, the other ultra that had intrigued me for many years was Hardrock.  With a new entry system for the 2004 race, first time applicants didn’t seem to have a good chance of getting into the race.  But, a losing entry would increase the odds of getting into the race in a future year.  So, I decided to apply, assuming that I’d at least start the process of getting into the race in the future.

I’ve entered a number of race lotteries over the year, and one thing has always been true.  For every race, I’ve won the lottery the first time in and lost all subsequent attempts.  Hardrock turned out to be the same.  In early February, while I was scanning the waiting list to see how far down I was, my wife, who was looking over my shoulder, suddenly started yelling, “You’re in, you’re in!”.

I didn’t know whether to be ecstatic or terrified and I guess it was a bit of both.

I work with a coach and let him know the results.  Living in Vermont would make my training difficult.  Most of our trails are closed until Memorial Day and it would be tough to do adequate hill training until the last month before the race.  But, my coach came up with a plan and I started working at it.

An early season test would be the Bull Run Run 50 miler in Virginia.  Things went very poorly there.  I was fighting a cold, I felt a bit overtrained, and things were really stressful at work.  The night before the race, I got to bed late, feeling dehydrated and not mentally ready for the race.  The next morning, I walked off the course 7 miles into the race, concerned by a sore Achilles tendon.  The race was a disaster in many ways.  How was I going to finish Hardrock if I couldn’t do a much easier 50 miler?

When I got home from the race, I stepped on the scale.  I weighed 196 pounds, way too much.  I’d weighed about 186 at Wasatch the previous September and even that had been too much.  I needed to get my weight down to increase my odds at Hardrock.

I was also anxious to get back to serious training, given the disaster at Bull Run Run.  But, my coach thought I needed some rest and I took it easy for two weeks before resuming training.  This rest was good for me from both a physical and mental perspective.

I changed my diet dramatically by mid-April, switching to a near-vegan diet that emphasized unprocessed foods, including lots of salads and beans and whole grains.  My weight began to drop quickly and I felt the effects quickly in my running.

On the 1st of May, I ran a strong 32 miler with 3200 feet of climbing.  Two weeks later, I ran a comfortable 32 miler and two weeks after that,  a 30 miler with about 12,500 feet of climbing.  The next weekend, I cruise-controlled a marathon just under 4 hours, an easy effort that was my fastest marathon since 2000.  I ran 335 miles in May and my weight was down to 176 at the end of the month.  But, I’d only climbed about 29000 vertical feet in May, less than the climbing I’d do in one race at Hardrock.

In early June, I focused on two last long runs before I’d leave for CO.  One was a 50K trail run in southern Quebec that had 10K of climbing.  The other run was an Adirondack Great Range traverse, a tough hike over ten summits in the Adirondacks.  This one had about 10K of climbing and it took 12.5 hours to cover 26 miles. 

By the end of June, I’d run over 1500 miles for the year, the most miles I’d ever run in a six month training cycle.  Would it be enough?

It was about time to leave for CO.

I flew to CO two weeks before the race.  I went straight to Boulder to visit with a friend and start my acclimation at 6000-8000 feet.  My first day was a hilly 17 mile run and I did some rock climbing the second day.  On my third day, I was supposed to meet my dad in Colorado Springs, so I decided to do some hiking on the Barr Trail that goes to the summit of Pike’s Peak.  Given the weather forecast, I thought I’d go up for 6 or so miles and then turn around.  But, I felt good and the sky stayed clear, and I hiked 13 miles to the summit, covering 7400 vertical feet in 4:21.  I felt the altitude a lot above 12,500’, but I was surprised to have even gotten that far.  I rode the train down to save my quads from the pounding that a 7400’ descent would create.

The next day I drove to Ouray with my dad and ran an easy three miles to about 8500’.  Starting on the Wednesday, 9 days before the race, I was going to go along on the course-marking hikes that occur daily.  Some friends from back east had told me that these days are great ways to meet other runners, to see the course, and of course, to acclimate to the altitude.  The first day was 16+ miles with 6600 feet of climbing and it really scared me.  We started with an easy hike up to the Maggie Gulch aid station.  Then, a cross-country route up to a pass, a traversing descent on a trail, another cross-country section down to a jeep road, up another saddle and down through a valley.  It seemed that this race had no trail miles.  Finally, a herd path turned into a trail to the Cunningham Gulch aid station.  From there, we did another major ascent, the last ascent on the course, and a final descent to our cars.  The next morning, I was wiped out.

The course marking the next day was out of Ouray, where my dad and I were staying in his RV.  I decided to not do the entire day of marking, not wanting to climb the 5500’ to the summit while already tired.  I was trying to taper for the race itself.  I did perhaps the first 3.5-4.0 miles up the trail, climbing only 2200’ before turning around.  The descent was pleasant and runnable, and except for the steep drop-offs to my left and I was really enjoying myself.  But, my left shoe caught on a root or rock and it felt like someone had ripped my middle toe off my foot with a pair of pliers.  I decided to simply hike down without looking at things, and I hobbled the whole way down.  When I looked at the toe, it had already swollen to twice its normal size and had turned purple from bruising.  Just walking was painful.  I was afraid I’d broken the toe and I still don’t know exactly what I did to it, but there seemed to be no reason to go to a doctor.  A doctor would either tell me that I could run or I shouldn’t run.  Either way, I was going to start the race as long as I could walk.  Plus, Friday was a rest day.

After a day of rest, we were going to mark the course from Telluride to the Governor Basin Aid station.  I took my ice ax with me for the day, trying to see if it would make sense to use it for glissading in the race.  I have a lightweight racing ice ax that is fairly easy to carry and I thought it might buy me some time in the race.  From Telluride, we did a long and fairly steep ascent to treeline and then things got even steeper to Mendota Saddle.  From the saddle, we could finally see the pass and it took my breath away.  The final ascent was up a loose scree field and it looked a bit scary.  But, 45 minutes after we left the saddle, we scrambled into the pass.  It had taken us 3:20 to get from Telluride to the pass.  John Cappis remarked that he’d be happy with that time in the race and I agreed that this seemed reasonable.  In reality, I’d only take 2:35 to cover the same terrain in the race.

There was a lot of snow on the other side of the pass and we watched as trail marking people came up the snow from the other side, kicking in steps the entire way.  I talked to some other runners about glissading technique and we watched a few people go down the slope.  It was steep, but with an ice ax, it was a trivial glissade.  From the bottom, I photographed a number of other runners glissading down, some well in control and some completely out of control.  We continued down more snow and I used the ice ax three more times before we were completely below the snow.  From there, it was an easy couple of miles to cars and we were done for the day.  I decided that I’d use the ice ax in the race on this section.

My toe felt fine while climbing, but really hurt on the descent.

The next day was the 4th of July and many of the other runners were going to run a 10K in Silverton.  I decided to run the 10K as well, but not push too hard.  I tried to treat the race as a tempo run, but was surprised at the difficulty of the course.  We climbed about 650’ in the 10K, mostly on dirt roads.  I took one major fall on a wet stretch of dirt road while trying to pass another runner.  I finished in 56:40, one of my slowest 10Ks ever, but my position in the race field was more encouraging than my time.  I finished ahead of more people than I expected, but I also worked harder than I’d planned.  My toe felt better than the day before, but it definitely remained a concern.

The next day was the last day of course marking, this time from Telluride (backwards on the course) to Oscar’s Pass.  With the race now only 4 days away, I decided to do only about half of the course marking.  I’d have to wait until race day to see the pass and Wasatch Saddle.  My foot needed some rest and so did I.

That night, my wife and children arrived and it was nice to see them again.  The next few days would be spent hanging out with them and getting my wife out to do some climbing.  Plus, I had some race activities to deal with – check in, course briefing, and a mandatory meeting.  Thursday arrived quickly and it was just about showtime.

The Race
I think I set a PR by sleeping 7 hours the night before the race.  I got up at 4:15 on Friday and had a bagel and some scrambled eggs.   My wife and son took me to the start and we checked in about 5:30.  I met my pacer, Brad Hatten, for the first time.  He lives in Durango and hikes on the course quite a bit.  Plus, he’s started the race five times and in 2003, had finished in under 43 hours.  His course knowledge would be invaluable.

We started promptly at 6:00 a.m. and I immediately found myself in the back of the pack.  My primary goal for this race was simply to finish and I figured that running early could only hurt me later on.  I hoped that if things went well, my time might be in the mid-40s, but I had no way of knowing if this was possible or not.  Scott Eppelman had given me some great advice – just keep moving and let the course come to you.  Trying to impose my will on a course like this just didn’t seem to smart an approach.

So, I hiked out of town and onto the narrow trail known as the Nute Chute.  We followed this trail until we crossed Route 550, and then we hit our first water crossing.  My feet wouldn’t be dry much of the rest of the race.  We headed up and I fell in with a number of other runners – Matt Mahoney, Joe Prusaitis, Mark Swanson, Jennifer Roach, and Nancy Halpin, among others.  Near the top of the climb, I met and talked with John DeWalt.  We would see each other a lot the next couple days. 

Mark remarked that he was surprised at my conservative start.  He thought I’d start much faster, but I knew that I’d be conservative for much of the race.

The wildflowers were beautiful through the upper part of this climb.  We reached our first summit, the Putnam-Lime Creek saddle about 7 miles into the race.  We’d climbed about 3000’ so far.  We then did a short descent and a climb to another saddle in the next mile and a half or so.  From here, the course went downhill steeply, mostly on a cross-country route.  I opted to walk the descent and the people I’d hiked up with quickly left me behind. 

We eventually got onto a trail and descended through a rocky section and eventually to treeline.  I ran some stretches, but a near-fall worried me.  I’d already fallen once in the saddle above and I was worried about hurting my knees or aggravating my toe any more.  So, I resumed walking, the entire way to the Kamm Traverse aid station.  Here, I ate as much food as I could and left the aid station with Uli Kamm.  We’d never met but he was very generous with his advice for this stretch and the race in general.

I didn’t realize it at the time, but I was near the back of the pack at this aid stations.  Friends who were watching the results on-line were concerned about me for much of the race because I was flirting with the 48 hour times.  I simply hadn’t bothered to look at the recommended 48 hour numbers or the cut-offs.  I figured it was best to run my own race and if I got pulled, it was because I was too slow anyway.

As Uli and I walked the traverse, he told me that conventional wisdom was that back of the pack runners should be close to him and Jim Ballard.  Falling far behind would mean that I was at risk of not making 48 hours.  Uli also told me the history of the traverse that bears his name and described the older and much faster route.

After finishing the traverse, we crossed a creek and I lost Uli on the uphill.  I almost left the course by accident, but some hikers quickly corrected me.  I started the long hike up to Grant Swamp Pass.  The top of the climb was steep and I finally got there after a few tense moments.  This is the home of the Joel Zucker Memorial plaque and I duly placed a rock on the memorial pile.  The course description for the top of this pass states “Take a deep breath and look over the top of the pass into Swamp Canyon.”  I knew that this was likely the scariest descent of the race, but I was in awe of what I saw.  There was a soft snow field at the top, then a long, seemingly vertical section of loose rock before more snow fields.

The manual says to glissade the snow field if it can be done safely.  I wasn’t sure if it was safe or not, but the alternative looked like too much work.  Other runners had worn a chute into the snowfield, so I sat down and started sliding.  I got moving pretty fast and slid onto the rocks below the snow.  I tried to stand up quickly and simply keep moving, skiing the loose rock down the hill.  This turned out to be a lot of work and I had to constantly watch for loose rocks from above me.  But, in a few minutes, I was down the steepest part and back on a trail.  Across the valley was a big red mountain that looked like a big dirt pile.  There was an obvious trail switchbacking up that mountain and I knew that was my next climb to Oscar’s Pass.  But first, I had to get down to Chapman Gulch and the first aid station where I’d meet my crew.

On this descent, I noticed that my left big toe was starting to bother me a lot.  It hurt at the top of the joint right by my foot.  Plus, my middle toe was sore as well.  The descent hurt a bit, but was easy and I soon found my crew.  They gave me a new bladder full of Succeed and I cruised the food table for something that looked good.  It was well after noon and felt warm.  My stomach was getting selective about what food it would take.  This would only get worse as the race went on, but it never got as bad as at Wasatch last year, where I was sure I would throw up.  I also grabbed my ice ax here, as a mental crutch mostly, for the descent off of the summit.

Back in Vermont, I’d done a long run with Sue Johnston in May.  Sue has a first and second place finish at Hardrock.  She had warned me that the first three passes are mentally tough in the clockwise direction.  The second and third, in particular, are difficult.  Sue warned me not to let them get to me mentally.  She told me not to “freak out” early in the race.

I climbed Oscar’s Pass very well.  I passed seven people on the ascent, but as soon as we started down towards Telluride, people started passing me quickly.  At least a dozen passed me on this stretch and I became very frustrated.  My left foot was killing me.  My left knee was sore.  I was slow.  I started to think about dropping out in Telluride.

I finally got through the worst of the descent and hit the dirt road into Telluride.  My crew was here again and they ended up seeing me at a low point here.  It had taken me 10.5 hours to go 27.6 miles.  I had hot spots on my heels that worried me.  I’ve never had a heel blister in an ultra, but one was forming.  My left foot felt like it was on fire.

I also had a pacer waiting in Ouray and decided that I needed to at least get to Ouray before making any decisions about quitting.

I decided to switch my shoes from Adidas Supernova Trails to the Montrail Hardrocks, plus change gaiters.  As I stood up in the Hardrocks, I knew that they were going to hurt my left middle toe even more than the Supernovas.  I asked my wife to go to the car for my Salomon XA Pros.  They don’t have enough cushioning for a course like this, but I hoped my toes would be better.  As I changed into those shoes and went back to my original gaiters, I told my wife that it would probably just be easier to quit right then.  I was acting like a baby.  Finally, I was ready and had some mashed potatoes and a sandwich and left the aid station.  My temper tantrum had wasted 22 minutes.

My wife and kids walked a couple hundred feet out of the aid station with me, wishing me well.  They were all so great.  I was acting like a jerk and the kids saw me only as super-dad heading out for the next part of his run.  How could I quit in front of them?

As I headed uphill, I felt much better.  I worked hard on relaxing and getting back into the race.  The climb was steeper than I remembered, but it was familiar.  Plus, I was passing people again.  I tried to help one runner who was clearly having trouble, but he seemed to be done.  He never made it to the next aid station.  I kept a steady pace up this section and got to Virginius Pass in just over 2.5 hours, way faster than during course marking.  This was one of my best stretches of the race, both physically and mentally.  I felt like I was back in the race.

At the pass, I quickly changed into my long pants for the glissade down the other side.  In my haste, though, I made a key mistake.  I had attached my new BD Zenix headlamp to the cross-straps of my pack and I left it behind here.  I had backup lights, but I love the Zenix and I’d never get to use it in the race.  I still haven’t gotten it back and I’m hopeful that it will turn up somehow.  After some soup and hot chocolate, I jumped over the edge and glissaded quickly down the hill.  I passed a number of runners using the fixed rope from the top.  A few more snow descents and I was on the jeep road to Governor Basin.

I had some soup and tried to eat a sandwich at the Governor Basin aid station, but my body was starting to refuse many solid foods.  I’d been using lots of banana and chocolate Gu up to this point, and I simply increased my use of Gu as my body rejected solid food.  Uli and Jim Ballard caught me at this aid station.  I was now behind the two people I was using as a benchmark for finishing.  It was also getting dark and I only had one flashlight for the 7 mile descent into Ouray.  If it died, there were huge drop-offs to the right side of the road that I would be unable to see.  I ran some of the descent, trying to stay ahead of an LED light that was chasing me down the hill.  But, I walked way more than I ran.

I arrived in Ouray at 11:05, about an hour behind where I’d hoped to be.  I met my crew and pacer and made some quick changes.  I changed into new shorts because it was warm.  I drank a milk shake and had some soup.  It was the first time I’ve used a milkshake in an ultra and I think I’ll use them again in the future.  It went down great and the caloric density is pretty high.  On the other hand, I was unable to even contemplate eating the cheeseburger they had for me.  In the past, cheeseburgers have been great at ultras, but my last two hundreds, they haven’t worked at all.

Brad was ready to go and we took off through town.  It became obvious quickly that he really knew the course and I simply watched his feet and followed.  I’d warned him that pacing me would probably mean a 28-30 hour hike with very little running.  I told him that I was stubborn and persistent but not fast.  So, he set a solid hiking pace and I followed.  He told me that his least favorite stretch of the course was coming up.  It’s a nasty trail section that has evolved just for the race, taking us to a roped crossing of the Uncompaghre River.  From there, we went steeply uphill to the tunnel on Rt. 550 and then up the Bear Creek trail towards Engineer Pass and Oh! Point.

At one point, there was a rockslide in front of us but not close enough to be a worry.  We cleared the switchbacks and started on the ledge trail.  I could see the darkness on my right that represented the void.  It was important to stay on the trail here.  While this section doesn’t seem dangerous at all when fresh, a slip when tired could be disastrous.

Finally, we cleared the ledges, and went past the Grizzly Bear and Yellow Jacket mines.  From the second mine, it was just over a mile to the Engineer aid station.  Before we got there, Brad told me that he didn’t want me to sit in the chairs by the fire.  He said it was too easy to stay there.  I thought of the phrase “Beware the chair”.  When we got to the aid station, I sat on some cold dirt and Brad got me some soup.  I had a hard time drinking the soup because a nearby runner was throwing up repeatedly.  Others around me just looked at each other.  I think we were all afraid that listening to the sick runner would put us over the edge.  I told Brad I needed to get out of there.

We’d already done over 4000’ of climbing from Ouray and there were only another 1000 or so to the top of our climb.  Brad led the way and I simply followed.  Eventually, I noticed a few snow flurries in the air.  Shortly thereafter, I saw the light at the top of our pass and the longest climb in the race was over.  It had taken us about 5 hours to do less than 10 miles, all of it uphill though.

At the top, we got onto an amazingly easy jeep road and headed down.  From the top, it was 5 miles and 2200 vertical feet down to the Grouse Gulch aid station.  The next two aid stations would be critical.  Grouse claims more runners than any other stations; it’s apparently easy to drop out with a fourteen thousand foot peak lurking in the next session.  After Grouse, the next big aid station at Sherman often claims runners as well.  At the trail briefing, Charlie told us that he thought the Grouse to Sherman stretch was the crux of the race.  I thought about all of this as we walked down to Grouse.  It was getting light.

Just before the aid station, I stopped at a roadside porta-potty.  Brad must have thought I was taking too long, because he knocked on the door to make sure I hadn’t gone to sleep.  I got out of there and we talked as we headed down.  I’d been out for almost 24 hours and I was sleepy.  I also needed to re-tape my feet.  I asked Brad if it would be OK to sleep for 30 minutes to let my pruny feet dry out before re-taping them and he agreed. 

As we got to the aid station, my crew wasn’t there.  And then, suddenly they were there, arriving just as I did.  I told them of the plan to take a quick sleep break and I found a cot in the aid station.  I unwrapped my feet and exposed them to the air and laid down.  It took me about ten minutes to fall asleep and about ten minutes later, Brad woke me up.  It’s an old trick and I would have done the same thing to him.  I don’t think ultrarunners ever get the full amount of sleep they request at an aid station.  I didn’t argue with Brad and taped my feet as quickly as I could.  I put on dry socks, grabbed a veggie breakfast burrito and we were gone.  I’d spent 38 minutes in the aid station.

At the aid station, Brad introduced me to his friend, Heinz, and explained that Heinz would take over pacing from Cunningham to the finish.  Brad was very generous in his time as a pacer, but thought that getting some sleep during the weekend would be a good idea.  I found it hard to even think ahead to Cunningham, but quickly agreed to the switch.

On the ascent to American-Grouse Pass, I tried to eat the burrito, but it was tough to choke it down.  I ate most of it and then had some Gu.  The climb was beautiful in the early morning light, despite a few rain sprinkles.  It was tough though – 2700 vertical feet in 2.5 miles, the last part very steep.  From the saddle, I got my first look at Handies.  It looked like Mt. Everest, but Brad quickly told me that it was much easier than it looked.  From long days in the mountains in the northeast, I found that easy to believe and we headed down into American Basin.  Again, Brad was great here, leading the way and I just had to move.  I stared into the distance, looking at the climb to come.

Near the start of the climb, we came across some young backpackers.  One of them was playing a funky-shaped guitar and singing a Pink Floyd song.  I asked the two hikers if they knew “Going Down the Road Feeling Bad”.  I don’t know if they didn’t know it or simply didn’t get my feeble joke, but they told me that they didn’t take requests.  The day before, I’d been listening to the Dead on my MP3 player while hiking up Oscar’s Pass.  Going Down the Road Feeling Bad started while I was hiking the pass and I ended up laughing out loud.  The previous year, at Wasatch, I was much happier when a tough climb was greeted with the Dead’s “Fire on the Mountain”, and the song’s plea “Long distance runner, what you standing there for?  Get up, get up, get out of the door”.  However, this year, GDTRFB seemed more appropriate to how Hardrock was treating me.

Soon, we were on the ascent route to the top of the Handies and for the first time, I noticed that climbing was getting more difficult.  I stopped several times on the climb to regain my breath.  We made the summit about 10:00.  I’d originally thought it possible that I’d see the sun rise from this summit, but I was way off that pace.  Brad showed me the old Upchuck Ridge route, possibly the only place where a route change at Hardrock has made the course easier.  I was glad we weren’t taking Upchuck.

The initial part of the descent was tricky, but things quickly got better and Brad picked up the pace.  We were descending with Jim Drummond and Chuck Kroger, but eventually Chuck got ahead and Jim couldn’t keep up, so we were by ourselves.  The descent to the water-only aid station at Burrows Park took forever and a quick stop there was pleasant.  While the road was hot and dusty, I knew we could make some decent time there.  We spent some time with John DeWalt on this stretch, but neither of us could muster much of a running pace.  We eventually took a right turn onto a newly constructed trail and it was a tough trail.  It only lasted a few minutes though and we were almost to Sherman

It took us 6:01 to cover this stretch, vs. Brad’s normal time of 6.5 hours.  We also had heard that Karl Meltzer had covered this stretch in less than four hours, in the dark, earlier in the race.  I can’t even imagine going that fast for these 13.5 miles.

At Sherman, I was feeling good although I could feel some hot spots on my feet.  Brad suggested changing socks, but I decided to not touch my feet.  I was afraid the tape would come off, so I left things alone.  I ate some soup and grabbed my nighttime gear and we headed out.  The worst climbs were now behind us and I had only about 30 miles to go.  I’d left the aid station after a key portion of the course.  I had 17 hours to cover 30 miles and for the first time in the race, I allowed myself to start thinking about finishing times, rather than just the concept of moving towards the finish.  If there were no disasters, I was sure I could make it.

The next few climbs were easier than those earlier in the race and I pushed hard out of Sherman.  I passed Uli here and I think it was the last time I saw him.  We got to the stream crossing just above a waterfall and rather than waste time looking for the safer upstream crossing, we just plowed through.  A slip would have been bad, but we were striving for efficient movement.

We caught Joe Prusaitis just a bit later.  It was the first time I’d seen him since Ouray.  He seemed tired, but in good spirits and still focused and we continued on.

We continued the long but gradual climb to the Cataract-Pole Divide.  It was now feeling hot in the midday sun and some distant but gathering clouds worried me a bit.  I didn’t want a thunderstorm to force me off the course for a while or to make the trails slippery, either of which would be disastrous.  We heard a bit of thunder, but we were never really threatened.

From the Divide to the Pole Creek aid station, I was suffering.  There were a few things going on here.  It was hot and I was low on water and calories.  And, I was sure that Joe was lying to me about distance remaining in the race.  After we’d cleared the divide, I thought we were going to head right into Maggie’s Gulch.  I had simply forgotten about a large portion of the trail in my tired state.  Brad kept telling me that we still had 23-24 miles to go, but I was convinced it was only 17 or so, and I was unsure why he was lying to me.  Severe sleep deprivation was setting in and I had many hours to go.  I needed to muster all of my strength to stay focused.

On the descent, many people passed me and they were running.  Brad tried to get me to at least shuffle faster on this nice downhill trail, but I wasn’t there.  I was trying to just survive.  We finally saw the Pole Creek aid station, and cruelly, it was up a big hill.  We got there and I asked for caffeine.  They didn’t seem to have any.  I had some hot chocolate, and depressed over the lack of caffeine, I decided to leave.  A volunteer mentioned that they could make some hot chocolate and add instant coffee.  I declined, stupidly.  Brad asked me to take some soup or potatoes, but I simply left the aid station.  Runners who have a pacer should usually listen to them and my next 4.4 miles would prove this.

From the aid station, we had a gradual descent to a valley floor and then an ascent to a saddle over to Maggie Gulch.  The saddle was hidden but seemed relatively close.  But, every time we went around a knob or knoll, we saw that we still weren’t there.  Near the top, despite taking 4 caffeinated Gu’s on the climb, I simply wasn’t there.  It seemed like I was in a dream where I was trying to move through water.  Somehow, I made the Maggie-Pole Pass summit and knew that I was close to the Maggie Gulch aid station.  I forgot that the summit was on the Continental Divide and I wouldn’t have cared anyway.  The descent was tricky but I made the aid station in fewer than 20 minutes.  I told Brad that I needed a longer break here for calories and caffeine.  He agreed with this very much, despite the fact that we were going to lose daylight soon.  I had a coke, two cups of soup, some watermelon and a cup of mashed potatoes.  I felt like I couldn’t possibly eat any more and we took off.  The aid station director, Lisa Richardson, was at this aid station and she had a few Powergels.  I found one with double caffeine and stashed it into my pack for later.

We left after 19 minutes in the aid station, leaving just after 7:00 p.m.  I only had 16 miles to go and I had 11 hours to cover the distance.  We started up the climb to Buffalo Boy Ridge, but I was confused.  I’d helped to mark the course and things seemed different.  Matt Mahoney was with me and he agreed, so I just followed the flags and didn’t worry about it.  A rockslide came toward me near the top of the ridge and Brad warned me about a few rocks that were closing in.  I had to move to avoid being hit.  At the summit, I thought I’d remembered that we went straight down to the old jeep road in the basin below us.  Instead, we traversed downhill on a decent trail for a long time.  Brad was in a hurry here, wanting to clear the next basin in the daylight, but I couldn’t keep up.  Near the bottom of our descent, I stopped to put on long pants.  John DeWalt passed me here and told me that his pacer had fallen back.  I joked that maybe we should switch pacers since I couldn’t go fast enough for my pacer.

From the trail, I’d shown Brad the new pass we were going over before starting a cross-country trek in a bowl.  That pass, Stony Pass, took a long time and even Brad was out of breath as we got to the top.  We needed flashlights as we started the descent on the back side.  I told a few people what the rough descent route was, but it had been daylight the last time I’d been here.

After about 15 minutes or so, four of us lost the trail.  There were sheep grazing in the bowl, bleating at us incessantly.  The dog on duty to watch them was barking like crazy.  It was jet black dark.  And, the next marker was missing.  We were worried.

I finally told the people with us that I could find the route based on my course marking day, but that we’d have to angle cross-country through the bowl and they’d have to trust me.  I don’t think they really trusted me and I’m not sure that I completely trusted me, but the other option was simply going in circles, looking for a marker that the sheep had probably trampled.

I’m not sure how long it took – maybe 15 minutes that seemed like 3 hours, but we found a marker.  Brad quickly started going marker to marker and showing me the way.  The lower we got, the closer to Cunningham Gulch, the better the trail got.  But, the trail was way worse than it had been during the trail marking day.  It was very dusty and very slippery.  I fell twice and found my LED light almost worthless in the dusty air.  And, I was inhaling dust.

But, thankfully, I could see the last aid station and we were getting close.  After we got to the road, it took just a couple minutes to find my family and get to the station.  I simply wanted some coke and soup and I wanted to hit the trail.  I was guessing I had about 5 hours or so left in my race and I was hoping I might be a bit faster.  My family had brought me a milkshake and I had some of that.  My poor daughter was clearly exhausted and I knew she wouldn’t make the finish line.  My wife and son were planning to be there, but the rest of the crew was going to bed and they’d meet me in the morning at the awards ceremony.

I found my next pacer, Heinz, and we crossed the river and headed up.  And up.  This was the last climb and I’d hiked it before, but not with 94 miles and 30K+ feet of climbing behind me.  We had to climb 2600’ to 13K – one last time at 13K in the race.  On the way up, I tried to stay with John Dewalt and his pacer and one other runner, but I was having some breathing problems.  I think the dust on the previous descent was the source of the problem, but I had to back off a bit.  It was OK though.  Heinz was a great pacer, a wonderful positive and soothing voice.  And, I knew I was going to finish.  I just needed to do it at a slowed down pace.

Partway up, I had two Gu’s but they didn’t seem to help.  After another 45 minutes, I told Heinz that I was going to take a break and eat the double-caffeine Powergel that I had.  We turned off our headlamps and marveled at the stars.  I pointed out some shadows on the walls of a nearby bowl but Heinz said nothing.  I suddenly realized there was no moon and they couldn’t be shadows.  They were snowfields.  I pointed out that the snowfield on the right looked like some sort of demonic face.  Heinz humored me.  Then, I noticed that the snowfield to the left was moving.  It looked like the profile of Phil Lesh playing bass for the Dead.  I enjoyed the hallucination for what it was, but said nothing to Heinz about this one.  It seemed appropriate to have a hallucination about the Dead though.

Shortly after we resumed climbing, we hit the top.  I’d done it – all the big climbs were done.  I was very tentative on way over to Little Giant Saddle, not wanting to slip down the scary terrain to the right.  After the saddle, I was also very tentative for a while on the steep descent, not wanting to tumble down the talus field to my left.  I used my trekking poles and tried to use my handheld light as well, but this was difficult.

We made it to the dirt road section past the Big Giant mine and we continued down.  I knew that we had a couple road miles to Arastra Gulch and then 3+ miles to the finish.

Another runner caught us and introduced himself as Bill Losey.  We’d been close for much of the last 30 miles, and talked a bit, but we hadn’t exchanged names.  When he told me his name, I knew that he was a good friend of another friend, Joe Novicky.  Joe is a great cheerleader for us when we do our tough races and we talked about Joe on the way down the road.

Heinz let us have our conversation and simply walked ahead, navigating and keeping the way clear.  I’d noticed earlier that Heinz was periodically kicking rocks out of my path to reduce the chance of me tripping.  Suddenly, Bill and I picked up on this and we started designing a new career for Heinz as an ultra pacer.  He was simply so helpful and positive that any runner would do well to have him as a pacer.  I don’t know if we amused Heinz with this conversation or embarrassed him, but it worked for us.  Finally, near the Arastra Gulch road turnoff, Bill went ahead.

We found him later picking up an animal bone and putting it into his pack.  Apparently a friend’s son wanted a dinosaur bone from the race and at mile 97, Bill had the clarity of thought to think that the bone on the road would work.  Heinz and I showed Bill the way across a creek and left him behind.  He’d stay just behind us the entire way into town.

We now had about 3 miles to go into town and I was shot, but I just kept moving.  Suddenly, I saw some sort of a painted African mask laying upside down on the trail in front of me.  The colors were beautiful – mostly teal stripes and I stopped to look a bit more closely.  The only thing there was a rock.  A little bit later, at an intersection, I saw trail markers going in every direction.  Heinz beckoned me straight head, but there were markers indicating a turn.  Upon closer examination, the other “markers” were yellow flowers.

We started crossing one stream after another.  At some places, the stream and the trail were the same.  We could occasionally see lights in the distance.  Three o’clock came and went.  Sub-45 would not happen.  Then, Heinz recognized the ski area and we were nearly there.  There were a bunch of chairs to my left and someone congratulated me, I think.  I thought there were 6 or 7 chairs, but maybe they were all empty.  Then, someone needed my name and number and radioed the info to the finish line.  We were really about done.

Bill was just behind me and I didn’t know if he wanted to pass me or not.  I’m a pretty competitive person and I wasn’t sure what I’d do if he tried to catch me.  But, the gap stayed fairly constant.  We crossed a few streets, including Main Street.  I knew Reese Street was next and then a left turn would take me to the finish.

After we made the left I could see the school.  My wife and son came out to meet us and they were so encouraging.  At 3:37 a.m., 45 hours, 37 minutes and 30 seconds after I’d started, I crossed the line.  I kissed the rock and tried to hold back the tears.  Somehow, I’d done it.  After nearly giving up about 35 hours earlier, I’d finished Hardrock.

I told Dale that no matter what I’d imagined about the course, it was harder.  I told him that as much as I love the Wasatch course, Wasatch simply doesn’t compare to this course.  I also told Dale about Sue Johnston’s advice and how that had helped to stay in the race when things were tough earlier in the race.

I went inside to check up some friends, particularly some other east coast runners.  I asked about other runners on the course, hoping that others I’d been out there with would make it.  I’d finished 65th and there were 15 others who would finish later, 7 of them in the last 20 minutes of the race.  There were 125 starters and 80 finishers, the most finishers in the history of the race.  At Wasatch, I’d finished in the top half of the starting field, but I didn’t pull that off here.

I took a shower and simply went to bed in the gym.  I slept off an on until 8:30 or so, when Brad woke we up.  He told me that it was time to get up and get moving, just like he’d done 26 hours earlier.

As soon as the concession opened, I bought a Hardrock finisher’s jacket.  I got the last one in my size, but I hadn’t been willing to buy it before I’d actually finished.

A few things strike me about the race.  First, I’ve never done anything close to this difficult.  The second night was very mentally difficult and the visual tricks my mind played on me were quite interesting.

I ran very little of the course – certainly fewer than 10 miles and maybe as few as 5-6 miles.  I am not a good downhill runner and that left me walking