Race Sherpa Rises

Race Sherpa Rises

Wednesday, December 16, 2015

My Tribute to Three Important People

This is the post that is long overdue.

This is the post where I pay tribute to three people who had a profound impact on my current state of affairs. Without these three people, some aspect of where I am, and how I am feeling, right now, would be different.

Of course, many more people deserve to be mentioned. The nurses and my family and my friends have all been instrumental in this surgery and recovery. But there are three who deserve their own personal shout out.


I've written about the story before, both on this blog and on Facebook, but a special shout out goes to my friend Holly Holycross Chandler. Holly is the reason I came to Omaha to have this procedure done at Nebraska Medicine.

The short version is that Holly and I went to high school together (in the 80s) and are Facebook friends. When I received my cancer diagnosis in May and started this blog, Holly wrote to me to tell me that she works on these surgery cases, and she encouraged me to come see Dr. Jason Foster about my case.

At the time, I had already started the process with Dr. Evan Ong at Swedish Medical Center in Seattle. I was happy with my appointments with Dr. Ong, so I just thanked her and moved on.

But she didn't stop...

She kept writing. The next email was a little bit stronger, and talked about all of Dr. Foster's outcome numbers; percent of re-occurrence after five and ten years, percent of complications from surgery, etc... By this time I was living and training in Colorado with Rose, so while I was still happy with my decision to move forward with everything in Seattle, I was less connected to Seattle at the time. In fact, Rose and I had already been weighing the other options regarding having the surgery in Omaha versus Seattle. (Specifically, that I am from Omaha, and my family still lives there, so I have a huge support system available there, AND, my father has been having some medical issues as well, so it would be a lot easier on my family if I had the surgery in Omaha.)

Holly's next email included Dr. Foster's cell phone number. She had spoken to him about my case and he agreed to give her his cell phone number to give to me so that I could call him. She insisted that I at least see him for a second opinion.

As it turned out, I had already been thinking that I really needed to seek out a second opinion on such an aggressive surgery, and suddenly, Dr. Foster stood before me as the perfect option.

It took a few weeks to make the connection, but we finally made it work. I had a great talk with him on the phone, and made an appointment to see him after Rose's championship races were over.

As they say, the rest is history.

Throughout this whole experience, Holly has called me "inspirational" and "a hero." I can't speak to that, although if my words have found their place in to someone's life in some positive way, that is terrific. The truth is, it was Holly's adamant persistence that made all of this possible.

So I send a special shout out to Holly, for both her kindness and her insistence. I am very grateful to her for her part in all of this.

[A local news station did a story on us, you can find it here. They didn't get everything right (the pain, the chemo, etc), but you get the idea. :)]


In every story there is usually an unsung hero. A person who is doing a lot of work in the background but not getting a lot of credit.

Amber Burke is that person in this story. Amber is Dr. Foster's nurse. I know what she has done for me, so I can only imagine how involved she is with all of his patients.

Five days (five days!) before my scheduled surgery, there was a discrepancy between what Nebraska Medicine was saying about my insurance coverage and what my insurance company was saying about my insurance coverage. Nebraska Medicine said that Dr. Foster would be considered "in network." LifeWise told me, repeatedly, that Dr. Foster was "out of network." There was no way I could afford to have the surgery in Omaha if he was considered out of network.

Four days before my surgery, and the day before I was scheduled to fly out of Seattle for Omaha, Amber stepped in and started making the calls to LifeWise herself; updating me any time she came up with new information.

The day before my surgery, when I was already admitted in to the hospital, Amber continued to jump through all of the hoops to make it all happen. I don't know how much extra time she spent on it, but I imagine it was quite a bit.

And somehow, almost as if by magic, she pulled it all together.

Holly got me to Omaha, Amber got me to the operating room.

So I send a special shout out to Amber for all of her extra hard work to make the surgery happen. She is also pretty good at removing stitches, for your information.


Perhaps the real hero of the story, and not just my story, but many people's story, is Dr. Foster.

Dr. Foster gave Holly his cell phone number for me to call, and he made the time to speak to me on the phone for 20 minutes. I have worked with many doctors in my life, and Dr. Foster has a unique combination of skills. In addition to his surgical expertise, he is very personable, funny, knowledgeable, confident, and just has a great overall "bedside manner."

It was Dr. Foster's confidence and his communication style that really won me over. That his outcomes seem to be awesome did not hurt the decision. :)

So I send a special shout out to Dr. Foster for being the surgeon and the person that he is.

As kind of a post-script shout out, I want to say that I think it was Dr. Tellman who did the open and close at my surgery. If so, fine work, young man. The incision looks great.

It has been said that no man is an island. And I tend to think that even those who claim to be "self made" might find, on closer inspection, that they had people along the way that gave them the means or the confidence to push onward. If I have written something inspirational, or acted in a way that someone found meaningful, it is a result of the teachers and the supporters I have had in my own life.

And when we look back at the tapestry of our lives, and identify how the strands were woven together in a particular way, the three people listed here will all be noted as some of the most influential people in this event of my life. Another thank you to all of them.

Sunday, December 6, 2015

The OCR Community, Peritoneal Perspiration, and Counting Chickens

I have never been quiet about the fact that I have an amazing family and amazing friends.

This has been true for as long as I can remember. Even though I have traveled around and lived in different places, I have always been blessed with a really great group of friends and acquaintances.

But I want to give a well-deserved, and specific, shout out to the OCR/Spartan community. In addition to the GoFundMe account that Matty and Amelia set up, and that so many people contributed to, I heard about the support shown for me and Rose at the LA Spartan Race this weekend; from moustache wearers to people running with Rose and Tim hashtags written on their bodies. There has been so much support from the OCR community, many people whom I don't know or haven't met personally, that it has been a little overwhelming.

Being a healthy and fit person my whole life, I never imagined that my name would be after one of those hashtags. And yet, here I am, recovering from cancer surgery and intraperitoneal chemotherapy, drain tubes still coming out of my abdomen, listening to stories about all of the community support. It is really amazing.

Of course, I know that this benefit is primarily the result of being Rose's significant other. She is the "popular" one. I have been at a lot of races with Rose. I know that whether she finishes 1st or 5th, the same number of people come up to her afterwards, wanting to talk to her or to get a photo with her. By association, much of that love spills over on to me. :)

But that aside, it doesn't change the fact that the OCR community has rallied around us in a way that I have not experienced from such a large group before. It is really remarkable, and I want to thank each and everyone of you for it. You, collectively as individuals, are why the community is what it is.

Ok, so, the drain tubes. They are still in because, apparently, my peritoneal keeps "sweating." I have the ok to have them removed as soon as the output gets below a certain number. But nope, they keep draining.

Of course, first and foremost, I am all for the best long-term recovery outcome. If that means leaving them in for another week, so be it.

But...I confess that I am ready to not be plugged in anymore. I have to wear a binder on my abdomen right now, and it is suppose to be a little snug to provide "support," both to my healing incision and to my (still in shock) abdominal muscles. But the binder also presses down on and rubs against the drain tubes sites, which is a bit uncomfortable. Probably the most discomfort that I have at this point.

And then there is also the logistics of the tubes and bulbs; pinned to my flannel shirt, tucked in to the internal pockets of a fleece vest, in the way of showering and washing, etc...

There have been a couple of times when the output has drastically dropped, and I'm like "sweet!" And then, eight hours later, there will be 50-100ml in them again. Ugh.

It's a mystery. I don't know how to stop my peritoneal from perspiring. :)

My next appointment with Dr. Foster is on Friday, 12/11. It might be my last appointment with him, outside of a CT we will have done the following week to get a "baseline" for future reference. At that point, I imagine the remaining incision stitches and the drain tubes will come out.

When I first received my cancer diagnosis back in late May, and I decided to blog about the experience, I thought long and hard about what to call the blog. I decided not to piggyback it on to my old blog (http://mydharmadays.blogspot.com/), which I started back in 2005.

Instead, I chose the Race Sherpa theme, and went with Race Sherpa Rises for two reasons:

1) Back when I started using Race Sherpa on Facebook (in private, I used it long before Rose got involved in OCR), I began every race travel morning with the line "Race Sherpa rises." Simply meaning, rises from sleep and off to action.

2) I knew that after surgery, there would come a time when I would have to battle back and reclaim my previous health and fitness. In this case, "rising" from the "ashes" of post-surgery/chemo.

I am not one to count my chickens before they hatch. At this point, I am still in full-on recovery mode (even though I am now past the point where most of the complications can arise). BUT, my mind is starting to create the template that I will use to re-create myself.

In many ways, this is a great opportunity. As a personal trainer and strength coach for the last 12 years, I have a lot of resources to draw from, but as sometimes happens when you are self-employed and busy, I had let my own training fall back in to a rut.

In my mind I was still seeking and innovating, but I wasn't spending enough time translating those new ideas to my body. I noticed this at least 2-3 years ago, but I continued to let the daily life stressors keep me from implementing all of the new ideas. I usually just defaulted back to the old tried and true routine.

But now I have the opportunity to start over, and to build from a different base. I am 49 years old, and have been an athlete all of my life. I don't want to just recover my old strength and fitness, I want to re-engineer myself, and embody the broad spectrum of what I think it means to be an athlete.

This doesn't mean I won't eventually find my way back in to the gym to push iron, but that isn't where I am going to start. I am going to lay a different foundation, and I have a lot of resources to draw upon.

First, yoga. I used to be a "yoga freak." I was really fortunate to be immersed in the yoga scene when I was (1998-2005 or so), because so many top teachers used to travel around and give amazing workshops. I had the opportunity to study with some of the best instructors in the world (at least those who visited the US), and I loved how each teacher had their own unique interpretation and expression. Many of these teachers are the primary teachers of people who teach today (or perhaps, by now, we are on the second generation).

At any rate, I took a break from yoga, for reasons that are too numerous to go in to now, and I never really went back. Not in earnest, at any rate. This winter will be a great time to re-immerse myself. My goal is not to become an asana master. Long ago I lost the desire to pursue the perfection of as many asansas as I could. I have some specific goals in mind, and knowing the principles of yoga very well, I will carve out and pursue my own unique practice.

Second, there are so many people out their doing cool work; bodyweight, clubbell/kettlebell, gymnastic/ground based movements, parkour, etc... I already own a lot of material/resources from these people, and I've dabbled it in for years, but I haven't really committed to it. And while there is way too much material here to do everything, and while each and every "system" might be complete in and of itself, I have already started to compose my own personal integration of it all. Mostly because that is just what I do. I am an integrator. I look for themes and principles and try to find the best ways to express them. Find what works and what is useful, and let the rest go.

There is no way I could list all of the people who are doing cool work in these areas, but here are some of my own personal favorites:
Ryan Hurst (Gold Medal Bodies) https://gmb.io/
Chip Conrad (BodyTribe) http://www.bodytribe.com/
Ross Enamait (Ross Training) http://rosstraining.com/blog/
Coach Sommer (Gymnastic Bodies) https://www.gymnasticbodies.com/
Mike Fitch (Global Bodyweight Training) http://www.globalbodyweighttraining.com/
Scott Sonnon (TACFIT/CST) http://www.rmaxinternational.com/om/home.php
Pavel Tsatsouline (StrongFirst) http://www.strongfirst.com/
Erwan Le Corre (MovNat) https://www.movnat.com/
Too many parkour-based resources to list

Of course, there are a lot of people in the traditional strength and conditioning world that I love as well, but because I am going to hold off on that piece until the rest of the foundation is in place, I won't bother listing any of them right now.

Three, climbing. Truth be told, I haven't done much climbing, and I have never excelled at it. As a traditional strength/power athlete, it always seemed so counter-intuitive. And that, along with it's high level of "function," is precisely why I want to do it. Besides, most of the climbers I know are good at so many other things.

Four, OCR. I don't mean the actual races. It will be a while before I am anywhere close to that. But I have always been an advocate for the OCR training paradigm. In fact, I had been conceptualizing that kind of training for quite some time when I went to my first ever Spartan Race (Washougal, 2013). I remember walking in to the festival area, looking around, and thinking "Holy crap, they are already doing all of this stuff, in a race format." It was pretty cool to see.

Of course, much of the stuff that I would clump in to "OCR training paradigm" can be covered in the groups listed above, but there are still the uber functional movements, or primary human movements. The ones you could label "farm/rancher/contractor training," especially heavy and awkward lifts and carries.

Fifth, and finally, running. I have been running for quite a while, so this isn't actually new. But my breathing issue forced me to do all of my runs long instead of fast. I would like to see what times I could drop to with my breathing back and with the correct training. I'd also like to get even better at what I am already decent at; running up mountains.

So those are the resources upon which I am drawing (plus others not listed); the bedrock from which I hope to rebuild my foundation.

Again, baby steps first. Recover, get my drain tubes out, get my stitches out, and ease back in to normal, every day activity. After that, it is game on.

Race Sherpa rises.

Tuesday, December 1, 2015

Part Two: The NG Tube Blues, Awesome Nurses, the No Good Very Bad Day, and a Rose By Any Other Name

In the tackling of every major challenge, we typically have our share of ups and downs. Battles that we win that propel us forward, and battles that we lose that temporarily set us backward. You can usually sense the overall progress forward, even in the losses, but it is the small wins that build and sustain the fortitude to push onward.

Within this obstacle of cancer and surgery, one of these early battles stands out above the rest...

The NG Tube.

The NG stands for "nasogastric." I also believe it stands for "not good."

Although, to be fair, it is only "not good" from an experiential standpoint. From a functional standpoint it is a very useful and helpful (albeit uncomfortable) medical tool.

Let's let Wiki step in here:

"Nasogastric aspiration (suction) is the process of draining the stomach's contents via the tube. Nasogastric aspiration is mainly used to remove gastric secretions and swallowed air in patients with gastrointestinal obstructions.

If the tube is to be used for continuous drainage, it is usually appended to a collector bag placed below the level of the patient's stomach; gravity empties the stomach's contents. It can also be appended to a suction system, however this method is often restricted to emergency situations, as the constant suction can easily damage the stomach's lining. In non-emergency situations, intermittent suction may be applied giving the benefits of suction without the untoward effects of damage to the stomach lining.

Suction drainage is used for patients who have undergone a pneumonectomy in order to prevent anesthesia-related vomiting and possible aspiration of any stomach contents. Such aspiration would represent a serious risk of complications to patients recovering from this surgery.

So as you can see, it serves a very important function. And, truthfully, not one person misrepresented my need for it, nor the "suckiness" of having it in place.

Way back in June, during my first appointment with Dr. Ong in Seattle, he told me I would need an NG tube and that it would suck. Every person who I talked to since then corroborated that sentiment, including Dr. Foster, when I met with him in October. Although, for the record, I do not believe he actually used the word "suck."

It's worth pointing out that to say that the NG tube "sucks" is true on at least two different levels; a coincidence that hadn't occurred to me prior to having that constant suction sound whirling away twelve inches away from my ear, all day and night.

While uncomfortable, I didn't really dwell too much on my NG tube the first few days after my surgery. It was late Friday night (my surgery was on Tuesday), that it all set in. The nurse that evening did a flush of the tube, and something changed. I don't know if the position changed, or just my sensitivity changed, but it suddenly became very uncomfortable.

I had a number of gag responses that night and the next day, and it hurt to swallow. I knew that it was pretty standard to have it in for four days post-op, and and I knew that I was on day four.

I was determined to try to have it removed that day, and the idea had worked deeply in to my brain. There was no shaking it. I even made a public offer of flowers, donuts, and coffee to the individual who could help me make it happen.

And after I passed all of the requisite tests, it did come off that afternoon. (And the flowers/donuts/coffee offer was paid in full.)

It's one of those things, you know? Those things you don't appreciate until it is taken away from you. Breathing and swallowing and being able to quench your dry mouth and throat. Having the NG tube out made me feel like my recovery had increased by 500%. For hours afterward I just lied there and appreciated the experience of it all.

Each day in the hospital was pretty similar to the others. The surgery team typically came in between 6am and 6:30am to do rounds, my vitals were taken and my meds were given every four hours (with miscellaneous IVs and other asundry things happening in the spaces in between). The pain team came in mid-morning. Dr. Foster made his way in some time during the day, depending on his schedule. And, of course, I had my daily walks, which began with a walker and progressed to just the IV pole.

A highlight of all of those days were the nurses. I can't say enough about the staff at UNMC. Everyone was so great and helpful. If you ever have to have this surgery, I highly recommend you at least consider Dr. Foster and the UNMC team.

And speaking of the UNMC team, Dr. Foster is the Man. His numbers (complication rates, days in hospital, re-occurrence rates of disease, etc) are excellent and his bedside manner is unparalleled. He is loved and admired by so many people and when you meet him, you will understand why.

Again, if you are confronted with having to have this surgery, I highly recommend you go visit Dr. Foster.

But back to me...

On Wednesday, eight days after the surgery, I was discharged. It felt so good to not be confined to a hospital room, but as soon as I got home I was presented with other challenges. Managing three drain tubes and a wound vac is pretty easy when you are lying around all day, but it adds another level of complexity as you try to navigate life at home.

Wednesday night went decently, and on Thursday I was just trying to focus on eating and pooping; both large steps in the recovery process.

On Thursday afternoon I was feeling a little "off," and as the afternoon went on, that "off" feeling turned in to a nauseous feeling.

There are numerous reasons why vomiting is a bad idea for someone in my situation. One, the bowels get sleepy after operations like this, and it is important that you get them to wake up and start moving things downward. So vomiting is kind of a step backwards. Two, when you have a new 8 inch incision in your abdomen, the abdominal muscle contraction of vomiting can be no bueno.

But vomit I did. Over and over and over. The No Good Very Bad Day.

We finally made the call to go back to the hospital. I sat in the back seat of my parent's Jeep and continued to vomit pretty much the entire way back.

At the hospital they tried a few things via IV but nothing was working the greatest to stop the nausea. I kept wondering how it was possible that I could vomit 20-30 times. It didn't seem possible that I had that much of anything inside of me.

Eventually, the resident came in and said that Dr. Foster had told him that if I continued to vomit, they were going to have to put an NG tube back in.

Excuse me?

My will became resolute. I was not going to vomit one more time. And thankfully, I think I had pretty much emptied myself by then. Finally, they administered Compazine, and that seemed to be the ticket. Relief. I think I fell asleep not long after that.

The next day Dr. Foster explained that this is a common occurrence. It can happen when the bowels are still a bit frozen, and everything just starts to back up. It can also be a side effect of the chemo treatment that was used during surgery.

At any rate, after a couple of bowel movements I was back on track and ready to go back home by Friday afternoon.

I've mentioned the drain tubs and the wound vac a few times. See the three photos below:

The first photo is the incision itself, with Steri-strips over top of it. You can also see two of the three drain tubes coming out of my torso.

In the second photo the wound vac is applied over the top the incision. The tube that is attached leads to a small portable vacuum type box that applies constant suction to the area. The medical adhesives that are used to apply the wound vac gave me the opportunity to experience an abdominal and upper pubic waxing two times every week. You might think that this free manscaping would be a nice little perk, but another wound vac is just applied over top, so one doesn't really gain the "aesthetic benefits" from having it done.

The third picture is just for reference. That was on my 48th birthday, in October of 2014. I was probably about 163 lbs in that photo. Right now I am in the 148-150 lbs range. This would seemingly put me in the Matt "Bear" Novakovich boxing weight class, but seeing as how I am not allowed to lift more than 10 lbs, I imagine punching, and getting punched, are out of the question.

As for the drains, they are called JP drains, and they are used to collect bodily fluids from surgical sites. The suction of the little grenade-shaped bulb at the other end is what helps pull the fluid out. Dr. Foster has, on a number of occasions, referred to this fluid as "peritoneal sweat," but frankly, I have no idea what that is. I will just trust him on that one.

I have been home now for ten days, and like in the hospital, those days are all very similar to one another. I watch sports, I read a little, I get on my laptop now and then, and I take lots of walks around the house. The weather in Omaha has been cold and off and on snowy, so outside hasn't been a really great option.

One of the (many) reasons I decided to have this surgery in Omaha was because my father has also been going through some medical issues, and it was going to be a lot easier on my family for me to have the surgery here. But a result of that is that there are numerous times throughout the day when both myself and my 74 year old father, dressed in sweat pants and long sleeve flannel shirts, are shuffling around the house with tubes coming out of our bodies. It paints a whole new perspective of the phrase "Oh god, I am becoming my father." :)

As of today, 12/1/15, I am down to two drain tubes. Yesterday, Dr. Foster decided that the incision was healing really well and took the wound vac off. It is great to not have to carry around that little satchel containing the vac system anymore, but for the first 12 hours I definitely felt more "vulnerable." As today goes on it feels better. It is likely that within a week both drain tubes will come out, and at that point I will be "tube free."

There has been one very important aspect of this whole experience that I haven't written about yet, and that is how Rose has risen up to the occasion. She is basically in a cold, flat, state, away from her friends and family, living at her in-laws house. I will give you a moment to let that sink in.

Rose stayed with me at the hospital every single night, and for a good part of the day. She read Facebook comments to me at 2:30am during "The Dark Night," and was basically there to volunteer to help out with anything that I needed. Since we've been home she has been just as helpful, while trying to fit in make-shift workouts whenever she can.

I am both grateful for her, and proud of her. She has been the champion that most of you already know her to be from Spartan Races. It has been a trying time, perhaps for her more than me, and she has held up extremely well.

Thank you, babe. You are awesome.

And a special P.S. shout out to Amelia Boone and Matty Gregg who took the time to set up a GoFundMe account to help me and Rose cover our medical expenses. https://www.gofundme.com/timandrose

Their kindness is of no surprise to those who know them. They are extremely special people, and we owe them, and all of you who have contributed, the largest thank you. We have the most amazing friends and supporters. We are truly blessed.

Saturday, November 28, 2015

Part One: Dr. Foster's Shake 'n Bake: Surgery and the Dark Night

A number of years I was going through a particularly crazy time and I wrote a blog post. While I was writing, it occurred to me how different a post can be when written from "within the storm" versus being written some time afterward.

Writing from within the storm is raw and uncensored, and can provide a rare and unique peek in to an experience. But it can also lack cohesion; the scribblings of a lunatic inside the asylum wall.

Writing back on something, even if that something is only hours or days behind us, is where we assign meaning. The narrative that we build around the events of our lives typically happens on recollection, not in the moment of the experience. The downside of this process is that everything has the potential of becoming part fabrication; a composition of the real experience plus the meaning and value we assign to it based on the beliefs and biases that we hold at the time.

And yet, sometimes that pause between the experience and narrative allows for a fine-tuning; a way of eliminating the static enough to hear just the line of music that you want to express.

I have considered writing this post for some time. Of course, I didn't have my laptop in the hospital, so the earliest I could have written it would have been the day after my discharge.

But in reality, my brain wasn't ready. For much of anything, actually.

Yesterday afternoon marks the one week mark of being out of the hospital. And my continued recovery, along with my increasing level of boredom, seems to have created the spark needed to finally write.

That said, I am not going to drone on and on about every little detail. There are lots of little things that happened that were interesting or entertaining at the time that are just not going to be so now, no matter how compelling I am at retelling it. So I will spare you those details.

I was admitted to the hospital mid-day on Monday (November 9th). The day consisted mostly of hanging out with Rose and eating broth and jello. Oh, and discovering a newfound love for popsicles. I also had some x-rays, took some pills, and was marked for a potential ostomy. To be honest, I don't know what else we did that day. Once you are connected to an IV pole it seems as if life slows to a crawl, as everything becomes more cumbersome and requires more effort.

Tuesday morning, bright and early, the surgery team came in for a last assessment and pep talk. I showered up and got wheeled down to pre-op. I remember nothing about the epidural. I think all anesthesia drugs work extra well on me.

I do have one vague memory, almost as if recalling an old dream. I remember someone saying something like "Tim, you have to keep you hands down. Keep them away from your face." I don't remember how many days after surgery I finally remembered this, but I am wondering, if the memory is true, if it was when they were putting the NG tube in place, because it would make sense that I was trying to pull that shit back out. :)

Obviously, I have no memory of the surgery. I actually have only faint memories of the night after surgery.

But it's worth writing a quick recap of the surgery, because I feel very fortunate with how it went.

The spleen I became so attached to about a month ago did get taken out. The amount of disease on and around it was too much to try to cut away. As I mentioned in a previous post, the risk of bleeding from the spleen was too high (and not something you want to add on to an already long and complicated surgery.) The distal portion of my pancreas was also removed. A neighbor of the spleen, it had just gotten to be a bad neighborhood all around, no thanks to the crack house of my disease that moved on to the block.

The area of disease on the floor of my pelvis near my rectum, fortunately, came out pretty easily. This was tremendous news. Along with that, no area of my colon needed to be resected. This all meant that I would not need an ostomy, permanent or temporary. And if I had to make a list of wins, this one would be at the top.

I also got to keep my gall bladder, which is nice. I am all about keeping the organs that you can, you know? Plus, fatty foods. Win.

There were some pretty heavy areas of disease up around the right side of my diaphragm. Dr. Foster thinks that there was definitely enough to cause some diaphragm restriction, so perhaps all of my breathing issues were directly related to this after all.

From what I have been told, the surgery part of the procedure went well and relatively quickly. I believe Dr. Foster checked in with my family and gave them an expected time of completion. While he was out of the operating room, the heated chemotherapy treatment (HIPEC) was being administered.

Apparently, after the HIPEC treatment, they discovered another "patch" of disease on the back side of my liver. Dr. Foster determined it would be best to remove it, so rather than close me up, they went back to work, adding time to an already long surgery.

Of course, this was of some concern to those waiting in the waiting area, as they thought the surgery was going to be over soon. But because I wasn't out there, I won't write about that perspective. I am sure if you ask Rose or my family for their story of that day, you will hear what things were like for them out there.

The take-away of all of this is that I feel very fortunate with how things went. I had all of the confidence in the world in Dr. Foster but I didn't know what cards my body would deal him. And while going through this surgery wasn't fun, I am happy with how well it went.

If you asked me to describe that night I would say I was in a dark room on a boat that was sailing out in a storm. I know that I wasn't, of course, but that is the felt-sense that I had. I felt as if room was always dark, and that things would come and go in waves. I don't really remember any major pain or discomfort. I remember the kind and compassionate voice of the nurse, and I remember Rose frequently saying "thank you" to her. I knew that Rose was on my left, between my bed and the window, and I knew the nurse came in from my right. Beyond that, it was an ebb and flow in and out of consciousness.

I don't remember waking up the next morning, specifically, but I do remember I was sitting up in bed when the pain team came in. I also remember their shocked faces when they saw me. One of the doctors said, "Oh my god, you look great for the day after that surgery."

This is a theme that would continue throughout my hospital stay. "You are not the norm," "you are an atypical Foster patient," etc etc...

I have no magic words for this. I am extremely grateful, yes. I may also be very lucky. And it helps that I am probably younger than many of Dr. Foster's patients. But from a behavioral perspective, all I can say is this: go in to these endeavors as vital and as healthy in body, mind, and spirit as you can.

Positive mind, positive outcome. That's not a promise that things will always turn out rosy and totally in-line with your desires; you can't control everything. But control what you can. Thoughts and beliefs are so powerful.

And that seems like an appropriate segue in to what happened next....

The dark night.

In addition to my epidural, I was on a PCA, which allowed me to click a dose of Dilaudid (hydromorphine) every eight minutes. I found people's instructions on when to use it a bit ambiguous, however. On one hand, it seemed clear: if you have pain, click the button. But the second most commonly said thing was: don't let the pain get ahead of you. This implied you should do some preemptive clicking.

I was not in the mental state to distinguish between those two things very well, and Rose, I'm sure, was more inclined for me to click than not click. The idea of "getting behind" on the pain seemed like a really bad option.

At any rate, I clicked. Quite a bit. Not every eight minutes, but probably every 8-20 minutes. We were so concerned that I would fall asleep and not click for hours, and then wake up in tremendous pain, that Rose set a timer on her phone. (God bless Rose, who fought off sleep all night to help in this endeavor.) We thought we were doing what we should be doing.

A quick aside...

In addition to the normal IV/telemetry alarms, there was one alarm that occasionally went off that sounded different. Our ICU nurse told us that that alarm sounded when something not so good was happening somewhere else. It went off in all of the rooms. It was subtle, but ominous.

And it was that alarm that I heard around 2:30am, followed by a whisper, "Tonight is the night you will die."

The rational part of me shrugged it off, but every time I closed my eyes my mind was full of dark, disturbing (even evil) images. My only escape was to open my eyes, but even that didn't stop my mind from replaying the whisper, "Tonight is the night you will die."

It might be interesting at this point to veer off on a tangent regarding my deep inner beliefs as to why I was experiencing this disease and surgery in the first place. Because armed with that information, it is easier to see why, along with my brain being bathed in Dilaudid, I couldn't shake darkness of this experience.

But if I do that right now, I will disrupt the whole thread of this story. So let me come back and address that some time in the near future.

To continue on with that night, the darkness wouldn't go away. At 3am I finally woke Rose up and told her I couldn't sleep. She spent 20-30 minutes reading me all of the kind Facebook comments that people had written on her post about my surgery. It was a nice distraction, but it wasn't enough to create any peace.

I felt like I was trapped in a small dark box, filled with disturbing images. Every time I closed my eyes, they were there. I tried lots of mental techniques to claw my way out, but nothing worked. (If you have ever done any "energy work" before, of any kind, I can tell you I felt completely "cut off." I couldn't connect up, I couldn't ground, I could bubble up. Whether this was a matter of not being able to properly visualize/concentrate, I don't know.)

Eventually, my mind went to something Dr. Foster had said in my appointment with him the previous month: in about 1% of cases, some patients, especially the younger ones, can go in to adult respiratory distress, which is a very serious condition.

I know, I know.... Now, looking back, it seems like an odd place for my mind to go, but that is the negative spiral I was in at the time.

Eventually, Rose went and got the nurse so that I could ask her about it. The nurse said that in those rare cases of adult respiratory distress, it typically happens upon extubation, which I was more than 36 hours out from.

The reason why I bring all of this up is because, rationally, I knew all of this. I knew I was caught in a negative state, I knew I was probably not in any real danger, and I knew that it was probably all due to the pain meds. But none of that made a difference. I was caught, and I couldn't find a way out.

And I am FASCINATED by that.

But again, before I go off on to a tangent (we will save them all and eventually circle back, don't worry), let's keep moving forward.

Describing my difficult night to the doctors the next morning was even more painful. I kept trying to describe it but they weren't getting it. No, they weren't dreams. No, they weren't technically hallucinations because it only happened when my eyes were closed. Etc etc

The end result of it all was this; after that night, I rarely pushed that damn PCA button. I did when I really needed it, or when I knew I was going to have to move or go for a walk, but that was it. I may have pushed it less than ten times in my final 3-4 days in the hospital.

That dark place never returned.

And that is the end of Part One.

Coming very soon - Part Two: The NG Tube Blues, Awesome Nurses, and the No Good Very Bad Day

Sunday, November 8, 2015

When The Only Way To The Other Side Is Through

Way back when I started this blog I mentioned, numerous times, that I was going to live the mindset of the moment, and not waste the life I was living caught up in the mental fear of future scenarios, real or imagined.

I also said that there would come a time when those anxieties and fears would be true enough.

In the last day or two, those moments have finally started to find their way in to my every day thoughts. They don’t dominate my thinking; they are more like faint whispers from the shadows, lingering just outside of sight.

I expect that in the next 24-36 hours they will fully step out of the shadows and in to the light, facing me squarely, eye to eye.

My goal is to face the realities of the situation but to keep my mind fixated on as many positives as I can. The alternative is to fixate on the negatives, and I don’t know of anything good that can come of that, even though I know it is a pretty normal thing to do.

I have come to the point where the only way to the other side of this obstacle is to go through it. There is no around or under or over (that I know of). The time for those things is now all behind me.

This is the battlefield of the physical; the time for courage to confront not just this disease but also the treatment, and to hope for, nay, count on, a more positive future. And yes, it is also time to allow the feelings of fear, sadness, weakness, and anything else that might be present to come forth for full acknowledgement.

It says so much about the human life that we have the space inside to hold so many opposing things at one time.

Interestingly, I think this is the time that a few of my friends have been waiting for. Not that they really want me to “break down,” but that they don’t know how to help or assist me until I do.

I have read it in their language since the very beginning. Amazing, loving, kind people, who I am honored to have as friends and acquaintances, all waiting for me to “lose it” so that they can find a gap in which to feel useful.

First and foremost, do not take this as a criticism of these beautiful people. I only recognize it because I can be one of these people as well. We are loved and adored and appreciated for being the helper; the listening ear, the shoulder to cry on, the “I am going to put you on my back and carry you through this come hell or high water.” And we associate strongly with that aspect of ourselves. We are not only helping those we love, we are stoking something inside that feeds off of that kindness and service. It feels like a sense of purpose.

It makes me wonder…

While the intention and the outcome can be a very beautiful thing, can we find ways of being there for someone that don’t require another person’s fragility? Can we stand by in support while they remain strong and are doing well?

It seems obvious, but it isn’t always as satisfying.

There is this thing that Rose always says. I don’t remember when she and I were first talking about it, but we have both referenced it a number of times in the last few years.

The Golden Rule states: Treat others as you would like to be treated.

The spirit of it is to create awareness and empathy. And in that, the rule succeeds. But it can be taken one more step…

Golden Prime: Treat others as THEY would like to be treated.

Each of us has our own unique preferences and desires. What is right for me might not be right for you. If I don’t know you, the best place to start as a helper might be to treat you the way I would like to be treated. But soon enough, I need to determine how YOU would like to be treated. The two can be very different things, and I try to remind myself of this so that I don’t end up pushing my own, very well-intentioned, agenda on to the person I am trying to help. If I do, I make it more about me than them.

Or perhaps, there is another, deeper, agenda at play inside of myself. Perhaps one I am not even conscious of.

I can already sense the depth of digression that is possible here, but time is short, so I will have to develop it more in a later post. :)

For now, let’s stick to the present reality…

Friday night I was trying to go to bed early because I had to wake up at 2:30am to catch my cab to the airport; except I wasn’t really that tired. And that created the opening for those first thoughts…

They weren’t about “Will I be able to still run mountains and do physically active stuff?” or “Will I be able to be as active with my children as I would like to be?” or “Will I have to have this surgery again in 5 to 10 years?” Those are all thoughts that have crossed my mind, but those aren’t the ones that set in on Friday night. The ones that came in to my head and grabbed me by the throat were all about post-op.

The pain, the discomfort, the questions.

What tubes will I have in when I wake up? NG tube, abdominal drain tubes, an epidural, a catheter, a central line, and probably a temporary ostomy. Will the NG tube give me a feeling of suffocation or choking? I’ve noticed that my breathing is my security blanket; the thing I can count on to create calmness. The thought of not having it the way I am accustomed to it is a little disconcerting.

I didn’t dwell on those thoughts very long, but I decided that I needed to create a proactive mindset; a way of navigating and preparing for what I might experience without dwelling on it. I think I have some of those strategies in place, but there is really no way of truly knowing what those days will bring.

One of the reasons why this whole situation has been difficult to truly embrace is because I have been so asymptomatic. I hear I have this disease, but I don’t feel it, so it just remains a conceptual idea. I have no real visceral experience of it.

However, having five days of GI issues leading up to today has really been helpful, in an odd way. It has helped me experience, albeit mildly, just some of the things I could experience if the disease was further along. And that is the type of reminder I needed heading in to this surgery.

To consider a surgery of this magnitude while being symptom free has been a tough idea to swallow. But now, the importance of the surgery is finally settling in. Again, conceptually I have understood this, but there was an experiential disconnect.

As I head to the hospital on Monday morning, I will keep this truth first and foremost in my mind. Beyond that, it will be about confronting the crappy and overcoming it with optimism.

This will most likely be my last post for a while. Tomorrow morning I head to the hospital, and then surgery is scheduled for early Tuesday morning.

I have greatly appreciated all of your super kind thoughts and comments and emails and texts and calls. I am so richly blessed with so many friends and family members. I also have to send a special shout out to the OCR community, who has really rallied around Rose and me throughout this situation.

Get out there and GIDDY UP! Don’t take it for granted!

Sunday, November 1, 2015

The Surgery: Sugarbaker Makes A Bittersweet Cookie

I have mentioned “the surgery” a number of times, but I haven’t really gone in to too many specifics.

The surgery is named after Dr. Paul Sugarbaker, who refined the procedure in the 1980’s. I won’t provide the whole history lesson here (you can find a lot on the web), but I imagine that when he proposed using this technique on people, other physicians must have thought he was crazy (or at least overly aggressive).

But after having positive outcomes, the procedure became standard practice, and is now used on people with abdominal cancers and other related conditions.

The diagnosis I have is a type of PMP (pseudomyxoma peritonei). In my case, my appendix burst (unbeknownst to me) 2-5 years ago (estimated), releasing of bunch of cancerous cells in to my abdominal cavity. These cells disseminated, took root, and then began to generate mucinous tumors.

Fun, right?

The surgery involves going in via a mid-line incision and then doing a complete surgical removal of the mucinous tumors (called debulking, or cytoreduction). This can also include the removal of a number of organs and other tissues.

Even after this aggressive measure, it is possible for microscopic cancer cells to remain, so they sew the incision shut about 70-80%, and then pump in heated intraperitoneal chemotherapy (HIPEC - hyperthermic intraperitoneal chemotherapy).

For 90 minutes they “massage” the peritoneal cavity to make sure the solution gets to all of those hard to reach places. Then they suction out the chemo solution and sew you up.

What gets removed during surgery is determined on a case by case basis. For me, the areas of mucin concentration seem to be in my upper left and right quadrants (near my diaphragm), down in my deep pelvis (near my rectum), and then some other sporadic areas.

In addition to the tumors, my greater and lesser omentum will be removed, my spleen might be removed (the spleen itself is fine, but because it is so prone to bleeding, and difficult to get to stop bleeding, they may decide to just remove it rather than to try to strip the tissues on/around it), my gall bladder is on a “to be determined” bases, my ascending colon might come out (which would then require a resection), and then, hopefully, they can work around my rectum...because after all of this, being able to poop out of my butthole would be a nice “win.”

There will also be “spot” removals from my liver and a few other areas.

In general, the procedure can take 12-16 hours. Because I have a low-grade case, Dr. Foster has said that it is possible that my surgery will only last 6-7 hours, but he won’t really know until he gets in there to see. It could just as easily push out to 10 hours or more.

So, as you can see, it is a big deal. And, bittersweet.

Sweet because what I have is treatable; bitter because not only is it a gnarly procedure, but my condition is technically “incurable.” Some people have to have this surgery performed a number of times throughout their lives.

And with that we have covered “Sugarbaker” and “bittersweet,” but not the “cookie.”

To be honest, I don’t have anything for the cookie part of the headline, except that I am going to be sure that I have a few between now and November 10th. :)

The plan is for me to be in the ICU 2-3 days, and then on the floor for another 6-7 days. Because the risk of complications is highest in the first 21-28 days, Dr. Foster has asked me to stay put in Omaha for four weeks post-surgery. I would like to be back in Seattle by Christmas, but it will all depend on how things go.

The “recovery time” he gave me was three months. And he was clear that he really means three months. He doesn’t want any “I was feeling really great so I...(fill in the blank; went out for a long run, did a hard workout, etc.)”

Seeing as how fatigue is one of the primary issues I will be dealing with, it is possible that I won’t have the desire to go do those things anyway. Then again, being pent up for so long might make me want to go do ANYTHING...just to get moving.

I don’t really sit around and ask myself the “whys.” At least not metaphysically. There are people who are much worse off than me and people who are much better off than me. The “meaning game” seems like a silly one to play.

Occasionally, however, I do wonder about the “hows,” in the sense of wondering how something like this happens. Medically, what I have still seems to be a mystery with no known cause, and that is the thing that piques my interest.

Just like we look back at the medical practices of earlier years and think, “Oh my god, I can’t believe they did that,” I wonder if at some point in the future people will look back at this surgery and think, “Holy crap, what were they thinking?”

But we do what we do because of the knowledge and the technology that we currently possess. This is where we are right now, and people’s lives seem to be extended because of it.

We are all just one more life in the unfolding evolution of humanity. And while being just one person in the entire history of humankind could make us feel small and insignificant, how we live is also our most important task. How will you spend this precious life?

For the moment, I am just living. Every single day. There will come a time, probably the day before the surgery when I check in to the hospital, where my mind will dabble in the fear and anxiety of the unknown future, but until then, I spend my time putting my affairs in order and doing the things that I enjoy.

Today, for me, that means going for run, eating yummy food, doing some reading and writing on my current interests and passions, and hanging out with Rose. Pretty difficult to complain about that. :)

Monday, October 26, 2015

Thoughts From Inside the Tube, Words That Should Not Be Spoken, and a Timely Visit

Every day I try to find ways to fully engage the moment I am currently experiencing. I fail quite often, but life events provide an opportunity to focus more intently. Going to the Med Center on Friday was one of those opportunities for me.

Yes, I was going there to have a test done to determine whether I am going to have to have a 12-14 hour surgery, a 7-10 day hospital stay, and (at least) a three month recovery. But I decided that I was going to engage and interact with every single hospital employee with full eye contact, attention, openness, kindness, and humor (if appropriate). It is such a great practice, and the outcomes serve both parties; me, because it keeps me grounded in the moment and in contact with fellow humans I am sharing the moment with, and the other person, because I am completely engaged and giving them my full attention (as oppose to being caught up in my own thoughts).

It actually went very well, for the most part. The most difficult interactions to sustain that type of mental focus are the ones we have with people we already know, probably because of how easy it is to default to previously conditioned patterns (perhaps making it the most difficult practice of all).

Anyway, as I mentioned in my Facebook post, I am not one who is prone to claustrophobia, but for some reason, my first 15-20 seconds in the MRI tube was a little sketchy. I'm not sure what triggered it, beyond the fact that I was being stuffed in to a small, confined space, of course.

I had decided to not make the situation any worse by leaving my eyes open, so I closed them as soon as I started to go inside. There was something about the tight fit, the position of my arms, the big plate that was strapped on top of me, the fact that my headphones slightly yanked off at the last second, and that my hospital gown slid up tightly against my neck, that created a perfect storm of momentary uncomfortableness. Regardless of all of that, however, we all know that it is really our thoughts that doom us. We start thinking and imaging scenarios that make the situation worse. (It's not surprising that this happens inside the MRI tube, because it's the same thing that happens to us in every day life.)

At any rate, I was able to push those crazy thoughts aside, and within 20-30 seconds I settled in and everything was fine.

In addition to being in a confined space, I was also given the instruction to not breathe deeply. First of all, I am a slow, deep breather, so that is already not easy (or fun) for me. Secondly, deep breathing is a great technique for people to use to stay calm. Telling someone who just got stuck in to a narrow tube, with a big plate strapped to their chest, to breath very shallow is not a comforting strategy, especially for someone who is having a hard time being in there in the first place. But, I understand that that is what they need to get good images.

While the total time of the MRI was about 90 minutes, they pulled me out a couple of times for some brief adjustments. Pelvis, abdomen, add contrast, continue abdomen, back to pelvis.

Finally, the tech announced through my headset that we were done. A few seconds later I heard the door to the room open and I decided that would be a good time to open my eyes and take in the full experience of the MRI tube. I laughed to myself immediately.

To my surprise, I had been pushed so far in to the tube that my head was almost sticking out the other end, meaning the super tight confines that I had been imagining (and that I had to pass through to go in) wasn't nearly as bad as my imagination had made it out to be. In fact, seeing the open space of the room so close to the top of my head totally re-framed the situation for me.

So, as mentioned above, there is this thing that I do...

I try to use daily experiences as opportunities for self-improvement. Sometimes these experiences are pretty obvious; getting angry with an aggressive driver, saying something that I later wish I hadn't, not paying full attention to someone I should be, etc...

But sometimes I search the metaphors for the lessons. It's like my own personal I Ching, but with way more than 64 possible hexagrams.

When you think about the uncomfortable experience that some people have when having an MRI, it's easy to understand why many would choose to close their eyes. Having their eyes open is a constant reminder of the confined space, and that visual data can easily add to the sense of panic. Closing one's eyes, however, not only eliminates the visual feedback of the immediate situation, but it allows one to mentally create a more preferable scenario; one that might help in their managing of the situation.

While imagining that you are not in the tube, or in some other uncomfortable situation, might not be "real," it is extremely functional. (Someday I am going to write an entire entry on this idea of real/true vs functional.) It is clearly a very useful strategy.

However, in my particular situation, it turned out that I was pushed so far through the narrow section that my head was almost near the opening. I just didn't know it until I opened my eyes right before they pulled me out. Eliminating the visual input (by closing my eyes) removed the opportunity to see a more favorable situation (my head was almost out of the other end of the tube).

Not long after this experience my mind started working through the metaphors, because, as I mentioned, that's just kind of what I do.

Creating a more desirable, and functional, re-frame by "closing one's eyes" to a situation can be an appropriate and useful strategy at times. It's less about "denial" and more about a temporary coping mechanism.

At the same time, giving yourself the chance to see the full context of the situation might be enough re-frame to get you through it. In this case, the re-frame was based on the reality of the situation (my head was near the opening of the tube), as opposed to the perceived/imagined situation (that my whole body was confined inside the narrow tube).

How might this apply to strategies I use in my own life? That is my own personal roll of the I Ching. What is more important is how might those principles apply to you?

The point of all of this rambling is that you can use this technique of evaluating life situations to learn and inform future behaviors. It's not just about being in an MRI tube.

In other words, every single day life presents us with these types of opportunities to wake up and evolve a little bit more, whether it comes in the form of something explicit or whether you have to discover and extrapolate the metaphor.

To me, it is a living, breathing, fully-engaged "meditation practice." One that is certainly worth trying.

A number of weeks ago I was talking about my disease with someone and I said, "It's so bizarre to think about possibly needing this massive surgery when I am asymptomatic for the disease." And the moment I said it, a little voice in the back of my head said "Don't say that out loud, you might make it happen."

I found myself using that same language a number of more times in the next few weeks, and each time I thought to myself "I hope you don't regret saying that."

The words that should not be spoken. :)

Superstitious? Absolutely. And yet, I'm sure we've all had the experience of saying something and then having it almost immediately come true. (I know, I know...confirmation bias. Blah blah. Labeling it as something isn't always the whole story, although it is a convenient way to dismiss it.)

I mention this because while I have been asymptomatic this whole time, last Monday I started to notice stuff seemingly out of nowhere. Mostly just pressure in my abdomen, specifically around my diaphragm. Since then I have been like, "Dude, seriously? I am feeling all of this stuff all of the sudden?"

Of course, I can't attribute the feelings to anything for certain. They could be a result of the disease. They could be unrelated. Maybe it's the food I eat when I am back in Nebraska.

Still, I will choose my words more carefully from here on out. :)

As a quick aside, on Sunday a cousin of mine who I probably haven't spoken to in 15, 20, 25 years showed up at my parents house. We talked for an hour or so. Until he brought it up, I had totally forgotten that he had been shot in the abdomen and had to have a pretty intensive abdominal surgery, including removal, resection, etc. What are the odds that that conversation would happen right at this point in time? Strange.

This afternoon I meet with Dr. Foster. I imagine we will go over the MRI results and then he will give me his plan. At that point, the probability waves of possible paths will collapse down to just a couple of options.

It will be a Schrodinger's cat type of afternoon.

Friday, October 23, 2015

Fear, 90 Minutes in the Tube, and the New Normal

Way back, when I first started this blog, a few people asked me about fear.

If you have been following along, you already know how I feel about indulging fear of a potential future scenario. And emotionally, I can say that I don't venture in to that realm.

But if you asked me what potential fears I have on a cognitive level, if I allow myself to wander in to that mental landscape, there is one thing that sticks out. I mean, yes, the pain and the discomfort of the recovery from such a major surgery is not something to ignore, but it's the future me that I wonder about.

While I have been athletic my entire life, it is fortunate that I don't solely identify with that quality as "me." Like all of us, we are so many things; each aspect potentially as worthy as the next. But being physical and athletic has always been a big part of my life, and I would be lying if I said I would not mourn the loss of that.

The fact is, if I have this surgery, I don't know what my future physical self looks like.

To some degree, the loss has already occurred. I have mentioned my on-going breathing issue a number of times, but I haven't spent much time describing the loss of strength and the fatigue that also set in back in 2013. It might have started even earlier, but by 2013 it had become obvious.

All of my lifts were much lower, and I would tire easily and quickly from workouts. I remember one day I hung a rope up in the backyard for Rose to practice on. To make sure it was secure, I grabbed on to it to pull myself up and found that I couldn't even get myself off the ground. Just a couple of years before I was able to hand over hand climb a rope in our gym, so I knew something was wrong.

In addition, even though I can still do 12-15 slow, controlled, full range of motion pull-ups, I can't dead hang by one hand from a bar.

My bench, my squat, my deadlift...all of the numbers are much lower than they used to be. And, of course, because of my breathing issue, my running times are not so great.

So I guess, in some way, I have gotten accustomed to it, even though in the back of my mind I have been waiting for the opportunity to turn it around. Biding my time for the great resurrection.

But what does the future really look like? I don't know. And I don't know that I have a way of accurately predicting it. I don't even know if this disease is the actual cause of it. But whether it is or not, the question is how well does one recover from this surgery.

I am scheduled to have an MRI this afternoon at the University of Nebraska Medical Center. It will be 90+ minutes in the tube, and I am thankful that I am not prone to feeling claustrophobic. I already have lots of visualization planned. :)

On Monday, I have an appointment with another surgeon; Dr Jason Foster of UNMC. Having already gotten the opinion of Dr Even Ong at Swedish Medical Center in Seattle, my appointment with Dr. Foster will shine a lot of light on how I move forward. The time for alternatives and options will narrow down to but a few.

So, I guess we will see....

Until then, there is a whole weekend to live "normally." No, wait....why normally? How about extraordinarily?

Or even better, make extraordinarily the new normal. Why not? What's the alternative? :)

Tuesday, October 13, 2015

The Mountains are the Terrain of My Soul

I have loved Colorado for as long as I can remember.

My family vacationed there when I was younger, and I always felt the inclination to return there, permanently, as an adult. It is no coincidence that when I left my corporate job in 1992, I went straight to Colorado.

It was on that visit that I dubbed Colorado my "spiritual home." I had been there many, many times before, but that trip was different. Unlike the fun summer vacations of childhood, it was a time of deep reflection. A time of questioning what life was all about, and what part I was going to play in it going forward. Those questions began in Dallas, at my corporate job, which is primarily why I left in the first place.

I remember that for fun I decided to play a John Denver CD in my Jeep, over and over, and the line "He was born in the summer of his twenty-seventh year, coming home to a place he'd never been before," from his song Rocky Mountain High, resonated strongly with me. I was almost 26, and that was exactly how I felt; like I was born again, home, and exactly where I needed to be.

To write about that time now would steal the focus away from my time spent there this summer, which is the primary purpose of this blog. For now, it's only important to know how strongly Colorado resonates with me.

While it is true that our primary reason for going to Colorado this summer was so that Rose could live and train at altitude to prepare for the Spartan Race World Championships, I had my own agenda. I was given 6-8 weeks to put off my surgery, and spending them in the place that feeds my soul the most was the best possible way of using that time.

I don't know what it is about a place that makes us feel that way. I am more apt to believe that it is actually (and always) an internal space that leads to that "I am home" kind of feeling, and that certain external places are better at providing the fertile ground needed for us to make that connection. Whatever the source of resonance, the mountains themselves, or the conditions that they provide, being there is a real source of joy and power for me.

On the weekend that Rose was racing at BattleFrog in Lake Geneva, I did a fast push up to Pikes Peak via the Crags Trailhead and Devil's Playground. This is the "short and steep" way to the summit (as compared to Barr Trail), and much, if not most, of the trail is above tree line. I went up by myself that day, and ran in to almost no one along the way. The few that I did see were on their way back down as I was heading up.

The next day I tried to explain to John Yatsko in an email the feeling I get when I'm up on a massive mountain like Pikes Peak, above the tree line, approaching the ridge line, and being the only person around. I am tempted to use the word "awe," but that doesn't convey the full fabric of my emotional content. A better word might be "vulnerable" or "exposed." It's as if I can feel the electricity in the air; the power of the atmosphere; and I sense and understand that it is way more powerful than myself.

It is equally interesting to me that the moment I near contact with others (when you crest the ridge line on this trail you can see the highway that goes to the summit of Pikes Peak), my focus almost immediately shifts away from that mental space. As if it is too uncomfortable to remain there. It reminds me of the lines in Rilke's Duino Elegies:

Who, if I cried out, would hear me among the angels' hierarchies?
and even if one of them pressed me suddenly against his heart:
I would be consumed in that overwhelming existence.
For beauty is nothing but the beginning of terror, which we are still just able to endure,
and we are so awed because it serenely disdains to annihilate us.
Every angel is terrifying.

Between joy and wonder and awe and vulnerable, so went my life in Colorado. I did virtually no real strength training (which, to be honest, felt kind of nice), but I hiked or ran almost every single day....much of the time with Rose. The trails and mountains are just too enticing to pass up. They are like a jar of cookies sitting out on a counter that you can easily reach. Why wouldn't you?

My ongoing (now 2+ year) breathing issues were always present, but not so badly that they stopped me from doing anything. I just needed to do everything a little slower than normal. I could still do the Incline in 32 minutes, though, and it only took us 2 hours and 13 minutes to get to the summit via Devil's Playground, so it's not like I was hobbling along. I mean, these are not Joe Gray (USA mountain runner) times, but they are pretty respectable for us "non-elites."

In an earlier post I mentioned something about delving in to the "woo woo." I go back and forth as to when is the best time to divulge exactly what I mean. I sense it is not yet the time. For now, I will just say that between the running and the workouts, I spent a fair amount of time examining my "inner life."

One of the most interesting things to come out of it so far, at least the thing that is the easiest to share, is what I learned about my moment to moment emotional state. Being a long time meditator and student of Eastern philosophy, I am fairly good at cultivating an awareness of my mental and emotional content, but I have long ignored my emotional state while being in that state of awareness. I know, I know, a little confusing...

Let me try to sum it up in a different way: I found that I frequently choose "dispassionate and serious" over "happy and joy" while being in that state of awareness about my mental and emotional content.

This will probably not come as a big surprise to those who know me well. :)

At any rate, that recognition, along with my new ideas on the power of our thoughts and beliefs and stories, provided me with a lot of material to work on. That has been my primary focus lately, and I can already see some of the effects of that work.

Medically, I am on stand-by. I have an MRI in Omaha on 10/23, and an appointment with another doctor (in Omaha) on 10/26. After that I will have a better idea of what things look like going forward. Oddly, one of the biggest things on my mind is this whole breathing issue. I am not convinced that it is the result of, or related to, my current medical condition. I just get a strong sense that it is something else, so it is often on my mind. I realized the other day that I don't describe it accurately. I usually tell people that I only notice it "at intensity," when I am running hard or working out hard. I guess I use that language to distinguish it from having "shortness of breath." I know people who have that, and that is not what I have.

But the fact is, I DO notice it at rest. I notice it any time I pay attention to it. There is something not quite right with the "flow." The path is somehow constricted or blocked, and I can't help but think that there is something else at play.

In the last two weeks a few people have asked me about my plans for the fall and the winter, and I reminded them about the whole medical/surgery stuff. They all reacted with an "Oh! That's right! I totally forgot about that."

And because of that, I know that I have been doing something correctly.

I don't want to spend every day living the narrative of the disease. I want to spend every day living the narrative of life and blessings and gratitude. Their responses reflected back to me that, for the most part, I have been successful in my goal.

Rose and I are back in Seattle now, but I carry the mountains within me. And I try to find that sense of awe buried in the loud, hectic moments of living in the city. It is there if you can just remain still enough catch it.

Saturday, October 10, 2015

Please Mind the Gap; or Mountain Running through the Shoulder Season

"Live bravely and boldly.
Those negative thoughts - the ones that come from doubt, from insecurity, from frustration - even if they are true, will never serve your highest good.
Take mental account of them if you must, and make preparations and adjustments if you need to, but then set them aside.

Create positive thoughts.
Create positive feelings.
Change the stories that are playing in your head.
You are largely responsible for co-creating your future.
It is already happening.
The question is whether you are participating in the way that you really want to.

A mostly blank canvas lies before you, what will you paint?" - TJS, 9/12/15


It has been a while since I've posted. If you have been following along on Facebook, you know why...

The last six weeks have been a whirlwind for me and Rose as we packed up the Subaru and road-tripped to Colorado Springs to live and train at altitude. In the process of getting there we had a "Tour of Former Spartan World Champions," stopping at Jenny Tobin's, Cody Moat's, and Hobie Call's. All of them are such fun and inspiring people.

When we got to COS we hit the AirBnB circuit, moving around to different parts of town. After three weeks, I can say that I learned the city pretty well. While it does not shine in the areas of food, coffee, culture, retail, etc (compared to other large cities), it is a jewel when it comes to trail and mountain access. Seriously, it is amazing. For our last two weeks there we moved up to Woodland Park. It's only 20-25 minutes up the valley from the Springs, but it is 2000 feet higher in elevation, so it was a good place to hang out as Rose got closer to racing Tahoe.

Most of our days were full of workouts, with a pinch of work and downtime sprinkled in. It is a privileged life (we understand), but also one that we worked for in the last 3-5 years to have. Despite all of our hard work, however, we still could not have done it without the generosity of so many people (Nancy Weintraub, Bruce and Jody Derington, etc etc etc). We are both so grateful.

I will write more about my time in Colorado in a later post, as it deserves it's own entry. Colorado as always been my "spiritual home." My "terrain of the soul." And my time spent there on this trip was no different.

Rose and I had an amazing time in Squaw Valley at the Spartan Race World Championships. But rather than cram too many subjects in to one blog, I will write about race related stuff on my Race Sherpa OCR Facebook page.


You see, this six to seven weeks has been "the gap." The shoulder season between my diagnosis/plan and my potential surgery. You might notice that I continue to use the word potential. I understand the power of our thoughts and beliefs, so I choose to feed that narrative even though I understand that the "reality" is that the surgery is more likely than not.

This "gap" has been a time of reflection and investigation for me. A time to explore my internal state and the external possibilities, however unlikely they may be. It has also been a time of re-connection to all of the things that I love and am most passionate about.

Ever since I was young I have been fascinated by things like placebo, spontaneous remission, nocebo, voodoo hexes, and the like. How does it all happen? I can't say that I know that answer, but I feel like I am getting closer to understanding.

I had assumed that perhaps my 25+ years of Eastern philosophy study might play a role in helping with that understanding, but to be honest, it has been my hypnotherapy background that has provided the most insight.

I continue to be fascinated by how events that appear to be unrelated and disparate at the time seem to weave and blend together in to a cohesive fabric when looking backwards at them. One could argue that this is a trick of the mind...to find a pattern based on current thoughts and beliefs...but I'm not sure we should dismiss it so easily. It is equally likely that we just have new information that allows us to see the connections. How you frame the story is up to you. It's what you do with it that counts the most.

As far as a medical update, I am scheduled for an MRI and an appointment with a surgeon in Omaha on October 23rd. I am considering Omaha over Seattle as far as where to proceed, but I have not decided for sure yet. I will know more after those appointments.

In my next post I will write about my time in Colorado and all of the "inner work" I have done in the last couple of months.

Thanks for following...

"The Universe doesn't hear what you think; the Universe hears how you feel."

Friday, July 17, 2015


There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. "Such bad luck," they said sympathetically.

"Maybe," the farmer replied. The next morning the horse returned, bringing with it three other wild horses. "How wonderful," the neighbors exclaimed.

"Maybe," replied the old man. The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune. "Maybe," answered the farmer. The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out. "Maybe," said the farmer.

It seems as if people often interpret "dispassion" as emotional vacancy. But is it? I guess I distinguish the two as expressing versus experiencing. You can have the experience of an emotion and still choose how you express it.

The conscious choice of expressing an emotion involves more pieces of information than just the thought/event that generated the emotion in the first place. In the case of the old Taoist farmer, it would seem that his life experience allowed (or cursed) him with a sense of context and perspective that "moderated" his response to the things that were currently happening in his life.

Would you say that he didn't experience joy or sadness? Or rather that he was just aware of how life worked, and kept from getting too caught up in the drama of the ups and downs?


One of my friends, who has been following this journey via my blog suggested that it could be useful to others if I wrote about the Fear.

I concur. I think it's important for people to see the whole realm of human emotion. The thing is, up to that point, I hadn't really experienced much fear. And I didn't want to write it about from a conceptual "what if" perspective. I wanted it to be palpable.

When I woke up last Monday morning, I finally started to feel a hint of anxiety about the appointment I had with the surgeon that afternoon. I knew that we were going to get a much clearer picture about what was going on. You might remember that for most of the last couple of months, I have been 100% aware of what the options COULD BE, but I was still holding out for the better options. I believe my line was "I will remain in a positive, upbeat mood until there is a reason to not be."

I knew that this appointment was going to collapse the probability wave on my Schrodinger's cat.

I am pretty good at dissipating the energy of emotions like anxiety, anger, fear, etc...but I know what anxiety feels like. Meaning, I know where I feel it in my body, and I know how it can rob me of the desire to "do things." I had planned on doing about 45 minutes on the incline trainer, and I was aware that that small whisper of anxiety, generated from the fear of what might be true, left me feeling weak and uninspired.

I decided that regardless of the outcome of the appointment, there was probably no scenario that existed that was going to benefit from me NOT doing that workout, so in one brief moment of inspiration, I changed and got myself to the incline trainer.

It wasn't the best workout I have ever had, but the work was put in, and I felt better about that.

Interestingly, while in the waiting room, I was calm again. Calm with inevitability, I suppose. There was very little I was going to do at that point that was going to change the outcome, so I just took in the experience of a sunny afternoon, hanging out with Rose.

So, according to Dr. Evan Ong (via his now famous dry erase board drawings):

Translation: His visualizations during the laparoscopy, plus the biopsy results, indicate that I don't have "cancer." Instead I have DPAM.

Disseminated Peritoneal Adenomucinosis.

If you look back at the "whiteboard of possibilities" from my first appointment with Dr. Ong, you will see DPAM listed as one of the options. (Oddly, as "bad" as it is, it's one of the best possibilities written on that board.)

What? You've never heard of DPAM?? Weird.

Maybe it's because less than .06% of the US population has it. (I was really hoping this would at least make me "one in a million," but the math doesn't work out. Still...I am pretty special, in the larger scheme of things.)

Here is a little help for those playing along at home:

You might notice a few things, like, for instance, it looks like it really sucks. I would tend to agree with that assessment. I suppose the next thing that might stick out to many people is the treatment. The thing is, I had already researched the treatment options, so that was not new to me.

What stood out to me was this line:

"There are no known genetic, familial or environmental risk factors associated with the disease."

I don't know how the pie chart breaks down for you, but for me, I am left with one unaccounted for slice: "an act of God."

In other words, God and I have a lot of talking to do. Preferably over coffee, and perhaps even with a nice pastry. (It's not like it's going to hurt at this point.)

So....the GOOD:

Not Cancer! Good thing. Sweet.

Of the things listed on Dr. Ong's white board of possibilities, probably one of the "best" options. Sweet.


Incurable. Boo. (Treatable, though, so...)

The surgery is an intensive 10-16 hour endeavor, involving debulking of the effected tissues, removal of organs (or parts of organs) that are effected, and a heated intra-abdominal chemotherapy treatment called HIPEC. They basically pour it in, slosh it around to get to all of those hard to reach areas, let it sit and "cook" for 90 minutes, then take it out.

7-10 days in the hospital, 3-4 months recovery. Hopefully enough remaining internal parts that I can still be active and poop normally.


Rose and I have this little "joke" about how bad something can be yet still be "better than cancer." It's crazy how your perspective changes. About everything, really.

Because this disease process has been going on for some time now (years), and because it is a slowly growing thing, Dr. Ong has given us permission to postpone the surgery until mid-October, after Rose's OCR season. This will give us a chance to go ahead with our plan of moving to altitude for the months of August and September. The only condition that we have is that if I get symptoms, or if a CT at the end of August shows things getting worse, then I come back to Seattle and do the surgery as soon as I can.

I am really grateful that we have those 90 days. I think it's important for Rose to get some altitude training in, and, it gives me a chance to research all of the woo-woo options. I don't buy a small kitchen appliance without researching it on-line for 3-4 days, can you imagine the research project I have ahead of me now?!? As for the woo-woo, let's save that for the next post. It makes more sense if you have context. :)

As for my final thoughts, I guess my Facebook post on 7/14/15 sums it up best:

"Statistics would say that most of my Facebook friends who are reading this post right now have had, do have, or will have some type of major medical issue in their life. So all I can say to you is what I have said before:

Go on a rampage of appreciation, and keep perspective around the troubles and stresses of your daily life. If you can make your inner space large enough to hold both your stress and your gratitude, most of your days will be full of happiness.

Giddy up!

Wednesday, July 8, 2015

The Subtle Art of Not Wanting Things to be Other Than They Are

People who know me are usually surprised to find out that when I was younger, I used to stress out about a lot of things. It's true. I would say that I didn't start to unwind that stress mentality until I was in my mid to late 20's.

I attribute this to many things, many of which I will share as this blog progresses. The point is, along the way, I started collecting (and using) tools to put in my "psychological toolbox." I sometimes call this my "spiritual toolbox" because the things that allow for the maturation of the adult personality correspond highly to those things that allow for the evolution of the soul. If those words don't work for you and/or rub you the wrong way, don't get caught up on it. Choose whatever words make sense to you.

In examining all of the tools in the toolbox, "not wanting things to be other than they are" is definitely a power tool. It is immensely powerful and effective, but it can also be used in an incorrect way.

"Not wanting things to be other than they are" does NOT mean "accepting your lot." It does NOT mean "this is what God/fate/etc has in store for you so you should just sit there and take it."

If you are in an unfulfilling job, or in a bad/abusive relationship, or experiencing a serious medical condition, or whatever, by all means, do what you can do to change it!! Summon and apply your will. That is part of what it means to be human.


What about in the meantime? If I have an unsatisfactory job, and I am actively trying to change it, should I moan and lament every day until it finally changes? How much of my life would I waste, waiting for the exact life conditions to match up to my demands and expectations, before I allow myself to be happy?

What if you can't work out, or run, as much or as intensely as you would like? Are you going to choose unhappiness until you can?

What if you could just find happiness and contentment right now? Could you hold that mental space and still look for a job? Could you hold that mental space while not working out or running? Do you see how it can be as easy as making a choice, in the moment?

"Not wanting things to be other than they are" is the negatively expressed way of describing the Buddhist idea that suffering is a result of wanting things to be other than they are.

Do you see the nuance? It doesn't mean you have to force yourself to be happy with unpleasant things. It means don't add to the unpleasant experience by piling on your own negative cogitation. Pain is a part of life. Suffering is mostly self-created. It is primarily a product of our thinking; the constant rumination of negative thoughts, driven by our desire for things to be other than they are, right now.

Sometimes, when I bring this idea up to people, I receive a lot of resistance. They push back, saying "Well, I WANT to be angry, or afraid, or anxious, or whatever. Those are human feelings, and I think we should allow ourselves to experience them. I don't think we are suppose to be happy all of the time."

I agree! The point is, to CHOOSE it. If you CHOOSE to be angry, or sad, or fearful, or anxious, you are expressing what you are entitled to. As I said before, summon and apply your will. That is part of what it means to be human.

But understand that if you choose it, you are also the one responsible for how you feel. You loose the right to blame it on others, or on external circumstances.

I hope that point makes sense. You don't have to be happy in every moment. I am encouraging you, instead, to be conscious and make choices in every moment. Be in charge of your thoughts, don't let your thoughts be in charge of you. Of course, of course...it's going to happen. Probably over and over and over. But the better you get at noticing it, stopping it, and applying your own volition to how you want to be, the less often your neurotic thoughts will drag you through the mud.

It is interesting to me that there is still another, deeper, level of resistance that I run across from time to time. Some people will bring up extreme examples: cases of living in a war zone, cases of living with famine, cases of experiences of extreme violence and trauma.

My first thought is: what is the source of their own resistance that they evoke extreme examples, that they themselves have probably never experienced? (And probably never will experience.) It seems like a mental/emotional parry. A way of sidestepping the difficult business of doing internal work.

And by the way, I imagine that we all do this, in one way or another. When you feel the inner resistance rushing out of you, you will know that you have another opportunity; an opportunity to ask "What is the source of my resistance?" To me, there are constant opportunities to find out what makes us tick. (Another one I like to use is any time I find myself judging someone's behavior, I turn it around and ask myself "When do I behave like that?" Not only does it allow me to have more empathy for the other person, but it gives me the opportunity to modify my own behavior in the future.)

This is all a journey. I am certainly not a master; only a student. I don't write as a teacher, from a position of superiority. I write only as a peer, who is sharing their experience. We all have things to share with each other!

Next medical update coming soon. Until then, try watching those thoughts swirling around in your head, and choose the mental inner space that you want! :)