Race Sherpa Rises

Race Sherpa Rises

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. :)