Friday, February 14, 2014

Climbing Upwards

Thursday, February 13th 



WBC jumped to 0.8!  3x jump over the previous day, heck if you round you get a whole number.  My hemoglobin dropped again so I need another pint of blood.  I started reading up on diet for blood and things like red meat, spinach, and exercise come in high on the list to stimulate blood growth.  I'm already anxious about getting to tomorrow's biopsy so need to slow down and focus on the day.

After getting some work done in the morning, I was unhooked around 11:00.  I showered then made my way to the stair tower.  I've been thinking about climbing the stairs for a while now and felt the time was right.  I made my way down from the 10th floor and figured if fatigue set in I could just bail out to the elevator on any floor and head back.  With the basement levels and one more floor above plus the roof access, there were 13 flights in all.  Going down was easy but I could feel the muscle atrophy in my legs.  The way back up was much more challenging.  My legs felt pretty strong actually, but with the reduced blood count, getting oxygen to my body was a struggle.  I had to take one flight at a time and then rest a good minute or two to let my heart rate come down.  I started to think about what happens if I pass out by myself in the stairwell, but I was feeling strong and that wasn't going to happen.  It took a little while but I made the entire climb to the top and even raised my arms in victory although no one was watching.  Exercise - check.


My dad and step mom brought me a five guys burger. Red meat  - check. We hung out for a while and even fired up the Xbox.  Exercise - double check.

My mom came in the evening and we went down and had a little dinner at the hospital cafeteria.  They were serving spinach cutlets, which were not half bad.  Spinach check.



Big day tomorrow, found out the biopsy is schedule for 3:00pm.  We originally thought it was going to be first thing in the morning so that's a little disappointing as I worry about getting back preliminary results now by tomorrow night.  I also cannot eat prior to the test for 8 hours however, the schedule bumps at that lab frequently, so now I can't eat any breakfast just in case they call me early.  Going to be a long day and with all of this in my head, and probably a long night.

Thursday, February 13, 2014

The best laid plans


My team was standing at the start line of a 200-mile expedition race that would take us 3 days and nights through the back woods of Maine to reach the finish line.  This was now my third longer race and I had a veteran team assembled that expected to compete for the win. We had our canoes and padding gear with us at the starting line but no water in sight.  The maps showed that we had a 3-4 mile section of woods to travel first (with all of our equipment including a very heavy canoe) until we reached our first large lake.  Teams took off running like it was a 100 yard dash, we had learned by now that this was wasted energy so early in the race.  We made our way to the lake rolling the canoe on wheels and sometimes carrying it over downed trees or rocks.  A large lake paddle followed and by three hours into the race we reached a dam where we would transition to a white water rafting section.

This segment of the race was designed to be fun really.  The river was controlled by the dam and they released the water each morning in the spring.  We'd get into class 3 and class 4 rapids but in a large rubber raft with a guide, so more fun than danger.  A small delay on the initial canoe portage had us around 10th place, but the field was fairly compact still.  We had a great time on the rapids and we paddled during the flatter stages of the river in order to move forward.  Our efforts seem to pay off because as we descended to the lower section of the river, we started catching the teams in front of us.  However, we also started to notice that the teams behind us were also catching up to us.  It took us a while to figure out what was happening, but our guide explained that we had moved faster than then water release and we were now ahead of the bubble of water traveling down the river from the damn.  It sounds crazy, but the water needs to fill up so many nooks and crannies as the river goes along, that even though we were on top of class 4 rapids a few miles back, now the rafts were scraping rocks on the bottom and you could get out and walk faster. The result was that almost all of the teams in the race came back together by the end of the river section.  It was basically like starting the race over again.  The teams that had burned energy to be way out front at the beginning were upset.  You could hear them complaining to one another.  For us, it seemed like a neutral event and nothing we could do about it at this point.  Just had to move on.

After meeting with our support team, the next leg was a 90-mile mountain bike leg that seems to be entirely on roads - well Maine roads, which means soft dirt and lots of rocks. It was early afternoon and we felt we would be to the next rendezvous point with our support team by 8:00pm that evening. We set out on the long slog that didn't seem to have too much to it except the saddle sore that can set it with that many miles. Just about as night began to fall strange things started happening and the wheels started to fall off.  First, we passed an intermediate checkpoint and faced a gear inspection and learned that we had forgotten to pack a piece of our safety gear. We were issued a 2-hour penalty that we would have to serve at the next transition area. Hot off of that news we started down a road that seemed good for a while, but quickly started to meander differently from what the map indicated. We kept pressing forward, but it became clear that we were no longer following along the line drawn on the map.  Another few miles and we had to pull up and start assessing the situation. We were feeling lost and now faced various road choices. We had been in the top three of the standings since we started the biking sections, but the longer we stood around trying to figure out where we were on the map, the more teams caught up with us. As it turned out, most of the teams ended up in the same (wrong) spot and started to work together to solve the riddle. It took hours with some trial and error going down incorrect roads and having to double back to our original location, then trying something else.

By the time we worked it out, it was the dead middle of the night. Now riding under lights, we felt like we were back on course, and then came the rain. It started raining pretty hard and the May night was cold. The one thing I hate to do during races is stop out on course. But the team was falling apart and it was pretty miserable. We came up on a small cabin in the woods that had a small covered porch and we ducked under.  Always a little risky in the middle of the Maine woods in the middle of the night which No Trespassing signs everywhere. But we piled up on the floor under our space blankets and took a 1-hr nap. It took us the rest of the night and a good portion of the next morning to get to the support area we expected to reach the previous evening.  We were tired, cold, wet, and starving as we didn't plan enough food for the full night. Our crew was also a little weary as they had been up all night anticipating our arrival at any moment. And, we had a two hour penalty to face at some point. It was too much for two of the four team members. They decided to drop out of the race. We were only 1/3 of the way through and this was devastating news. All the preparation time, all the training, all the effort to get here. I consulted with my teammate and good friend David Darby and we decided that we would continue on even if it was unofficial. Once again, nothing more we could do about an outside force.

We refreshed ourselves with supplies and food, served our penalty, and continued on. A day and half later, Dave and I crossed the finish line together unofficially in third place.

Throughout my adventuring racing career I was faced time and time again with surprise challenges: flat tires, broken bike chains, getting lost, feeling and getting sick, bad or broken team mates. Besides the awesome travel and adventures, the repetition of facing and dealing with these challenges was the most valuable part of the whole experience.  I think back to my life prior to getting involved with adventure racing and I see a life focused on the wrong things and stress built up over meaningless things.  How many times was I stuck in traffic and cursing up and down in my car?  How many people get mad because their Starbucks isn't made just right?  I watched a Vice President at my company blow a gasket yelling at me because I suggested two engineers move next to one another because they were going to be working on a project together for the next several months. Not natural.

It was right around this time that (and not coincidentally) I launched my event business - Genesis Adventures - and began to promote and run my own adventure races locally in Connecticut.  It was a long time coming but I had finally done all the work to form the business, create the website, do the marketing, secure permits and all the support equipment necessary to pull off the event. I had quit my six-figured job and was hanging out on a limb with a big mortgage and two small kids at home. The last element I needed was kayaks for the race. I had sourced a supplier and felt the order was in hand. I needed around 60 inflatable kayaks for the first event and coming up on one week before my debut event, they had not arrived. I called the supplier and it turned out that they were on back order and none would arrive in time for the race. I distinctly remember kicking a box in my office very hard and sitting with my hands in my head for a while. But I was different now.  Just one more obstacle standing in my way that I had to solve.

I found that the local Sports Authority stores stocked the same kayaks, I jumped in my truck, my wife in her van with the kids and we bought out every store I could in the area. It was now a day before the race and I only had 20 kayaks. The great thing about adventure races is that the competitors are expecting surprises from the race organizer.  Since there was a running, biking, and kayaking section on the course, I split the field in three and sent them in three different directions. Only 1/3 of the field needed kayaks at once and we made it through the race. In fact, the racers thought it was cool that they weren't all together and couldn't tell how they were doing until the end.

As I staged more and bigger events as a Race Director, the one thing you learn is that despite all the planning - things happen.  And they're going to happen to you.  What's important is how you react. I see too many people who want to over plan, and then when a deviation occurs, they're crushed.  They can't deal with it.  I've watched top triathletes run into a relatively small, but unplanned issue and blow a fuse ruining their entire race. I've seen inexperienced Race Directors over plan, and then get consumed and overrun by a small problem rather than seeing the big picture.

A great man I know worked for the same company for over 30 years until he was laid off during a downsizing.  It spun him into a clinical depression for close to a year.  It was very hard to watch.  His plan, his self-worth, his vision of the future was all tied to the company that he started to work for out of college and would take care of him until he retired. But an outside, uncontrollable force changed his plan suddenly.  It was crazy, the man had achieved everything great in life.  A loving wife, four beautiful children, house, and solid wealth that gave him the freedom to do whatever he wanted in life. At some point in his journey, he awakened.  He pick himself off the couch and began to move forward.  He created his own new business that gave him a new sense of purpose and a greater sense of pride than I have ever seen.  It wasn't even about the money for him.  Over ten years later the business continues to run and grow.  I take great inspiration from this man and I'm very happy to be part of his life.

We've already covered that planning and preparation are important. But far more important is the ability to read and react to the certain and sometimes very sudden changes that will take place in your life. Obstacles are coming your way, and I'm not talking about a cold Starbucks, traffic, or someone playing politics at work, that's all crap.  You need to develop resilience, an ability to absorb a new situation and adapt your plan at a moment's notice. This is the only way to move forward in life.

Small Steps


 
Wednesday, February 12th

WBC up to 0.26.  Seems crazy to be focusing on decimals, but small steps are to be expected.  This is the highest WBC since six days ago, so as long as the trend continues I'll feel like I'm headed in the right direction.  The doctor would like to get me on a WBC booster drug, but he can't do it until after the marrow retest showing positive results.

I rolled out my news to more of the people I work with which was a huge relief for me.  It's been hard carrying on conversations and work without them knowing and it finally started costing me some sleep.  I feel much better now having everyone in my life in the know and not needing to tap dance around it.

It was another good day here, a productive day of work, visited again with my Dad and Ruth for lunch time, my sister stopped by in the afternoon and my mom brought me a nice dinner from a place called Carmel's.  Braised beef & portabella flatbread, chicken skewers, and chocolate lava cake!  Good food is therapeutic - always.

Hospital tip - the hospital beds have rubber mattresses, similar to an inflatable bed.  Sleep on them causes me to sweat.  The first week I thought it was the chemo and being sick.  But one of the techs that clean the room suggested that she put an extra blanket between the sheets and the mattress.  That made all the difference in the world.  The night sweats went away and made for a much more pleasant sleep.

Wednesday, February 12, 2014

Big Thanks

Tuesday, February 11th

My WBC lingers at 0.18, it seems to bounce up and down slightly each day but no upward turn towards the 10.0 I need to get back to, hard to start each day with a little disappointing news, but I need to balance that with patience and not get overly emotionally attached to this stat.  Overall still feeling great.

My Dad and step mom flew down from New York to visit for the week. Great to see them and they seemed happy to be dodging the next snow storm that was about to hit this week.  With the sun shining, we headed downstairs and outside for lunch by the lake.  It doesn't get old.


 The big news of the day came later in the day when my friends who organized the tennis benefit this past Sunday back in Vero Beach asked Joanne to come over to the club for the final presentation.  I joined in via speaker phone as the lead dog - Gary Schafer - announced his way through all the various components that went on throughout the day and the amounts raised from each activity.  The numbers mounted quickly and in the end, over $10,000 came in from an event pulled together in one week.  WOW.  Speechless.  Apparently a huge embrace went up around Joanne and a few tears flowed.  Tears of joy in this case.

It is impossible to express enough gratitude to the people who organized, participated, and some just flat out donating without really even knowing us personally.  We're so humbled and thankful for the support and this is just an amazing story.  I'll just keep saying it because it will take a long time to say it enough to them - THANK YOU!

Always great to put another good day in the books.

Tuesday, February 11, 2014

Irony

Monday, February 10

Another day of feeling strong.  At lunch I was able to unhook and go outside for a walk, I pushed all the way down the sidewalk to the road I can see out my room window.  It's only a quarter of mile or so, but for me it felt like breaking one more barrier.  Stairs still remain a challenge so I try to do some repeats.  I want to find the main stairwell one day and walk up to my room on the 10th floor.

There's been no rebounding of white blood cells yet but the doctors are not concerned, still a normal progression.  I try not to let it bother me but feels like I wake up each morning at 4:00am when the nurse comes in for vitals to find out how I did overnight and get bad news.  Can't dwell on it too long, but I'll be very happy when my body creates some upward movement on its own.

The small skin spot that appeared magically on my upper back has not grown and the infection control doctor likes the coloration and doesn't think it's going to cause any issues.

My hopes of getting off the IV fluid was dashed by the Oncologist, he wants me on it the entire time I'm here.  I may get up to pee every 90 minutes the rest of my life.  He also said that the Saturday night ultrasound did turn up a small blood clot in my right arm.  How's that for irony?  The one thing my body shouldn't really be able to do well is overdoing it somewhere.  The overall risk is minimal at this point and they can not give me blood thinners, so for now it's laissez-faire.

Monday, February 10, 2014

Fear...and courage


As my adventure racing career progressed we started participating in longer races.  The next level included 100-mile or 24-hour events.  Besides navigation, cross-country running, mountain biking, and kayaking, these races would add different disciplines depending on the location of the event.  New for this particular event would be glacier crossing with ice axe and crampons plus rope work with harness and rigging.  We had to certify in these disciplines which required training classes before the event and passing a practical immediately prior to start of the race.

In this case, we were in the Pacific Northwest at Mt. Hood, OR (also very beautiful location) and would start the race with a 4,000' vertical ascent up Mt. Hood where we would be traversing the glacial ice up towards the top before descending back down.  Mt. Hood is a volcanic mountain so the landscape is composed of large sharp black boulders, smaller sharp black rocks, and smaller not-so-sharp-but-annoying-in-your-shoes black sand depending on how high you are on the mountain.  It was the middle of July so you have thick forest at the base of the mountain, then bare volcanic rock hillside above the tree line, then ice / snow covered volcanic rock a the highest elevations year round.  We would be headed up from 4,000 feet to 8,000 feet in elevation to get a taste of some ice.

As the race went off and teams started up the mountain, they began to spread out and pick their own routes up the rocky slopes.  At certain locations there was a low route and a high route and teams were trying both.  The high routes were very thin ridges of volcanic rock where at the apex there was just enough room for a single person to walk with steep slopes heading off from each side. The soil was loose, almost sand-like, and a misstep to the side would send rocks tumbling downward - to the low route!  For a brief period of time we were down on a low route and I could see the danger ahead.  A single rock would start small avalanches of rocks, or a single rogue rock would pick up steam and become a missile until it crashed into the valley below.  It was one of the first times since I started the sport where I felt like I was facing a very dangerous situation (it wouldn't be the last on this day).  We performed a rapid course correction even though it burned a bunch of energy and made our way on the high road from that point on.  It was a huge relief to be above the rocks rather than below them.

The next pressure point was the glacial traverse up at 8,000 feet. We strapped on our crampons (spikes on shoes to dig into ice) and pulled out our ice axes, holding them as we were trained to do.  The ice axe is your human break.  With a huge slope of angular frozen ice, a large vertical drop off, and those giant black volcanic boulders setting at the bottom of the hill, if you fall and start sliding, you need to perform rolling maneuvers and dig in your axe to stop, the quicker the better.  We took our time and this section passed for us without incident, but fear kept us very vigilant each step of the way.

Later in the same race, we were far down the mountain in another part of the valley when we came to a huge gorge.  The organizers had strung huge ropes across from one side the other side of a 400' gap.  Think a very long, very thick clothes line connecting the two sides together.  We had to cross Tyrolean style, which means that you are suspended under the rope from a pulley so you can ride the downward sag of the rope to the middle, than use your arms to pull yourself the rest of the way to the other side.  We broke out our climbing equipment, hooked up our harnesses and stepped to the edge to strap in.  I was now attached to a rope by two very thin (but strong) straps, I have a huge backpack fully of supplies on my back, and I faced backwards with my heels hanging over the edge of drop that goes 900 feet straight down to the valley floor below.  It was time to jump.  And not just jump, but do so with force as the further you can propel yourself down the line from start, the less work you had to do pulling yourself up on the other side.  Holy crap!  Deep breath.  Jump.  As it turned out it was an incredible ride and we obviously lived to see another day.  The preparation was right, the equipment was right, and everything turned out fine in the end.

Fear is one of the emotions that all of us deal with at many points in our lives.  There's fear of things that we know can cause us harm and are as tangible as falling rocks in front of us.  There's fear of what might happen because of a certain action or situation we take.  And there's definitely fear of the unknown.  Since my diagnosis I've been experiencing fear at different levels.  When I first received the news from the blood test I was fearful about the fact that I have cancer.  What was going to be the outcome here? Did we catch it in time?  Answers and information are comforting, what's really bad is the unknown. Waiting on test results you know are coming and will determine your prognosis is emotionally taxing. The brain has nothing left to do but daydream and start enumerating possibilities.  Not all of the outcomes are positive which then begins to reinforce the fear.

Life and death based fear will definitely put other fears I have well into perspective and hopefully they can for you as well.  As I think back over situations in my life where fear has delayed my action; how do I have a tough conversation with a family member? Should I leave my job for a new job or to start my own business? How can I confront someone when there's been a disagreement and a communication breakdown in the past to repair or end the relationship?  Many times I let fear hold me back and problems festered.  Here's what I know now:

* A quick course correction can reduce or eliminate a bad situation in front of you;
* Remaining diligent and prepared when entering areas of danger can keep you safe as you cross any glacier; and
* Prepare for battle through information gathering and training, then trust in yourself, step to the edge and jump!

I find some fear useful as it can force focus and make us aware of something that needs our attention.  But dwelling on fear makes no sense.  Facing and getting to the other side of a situation will set your fear aside and provide mental and potentially physical relief. You'll find a much more satisfied person on the other side of the gorge because you had the courage to get past it, and you might even enjoy the ride.

Clearing Skies


Sunday, February 9th

I woke up from a great night's sleep and can tell I feel much better than yesterday.  I had to on board some more blood and platelets due to low counts.  Across the boards all numbers are still zeroed out so no natural rebuild has started yet.  My daily consult with the Oncologist confirmed that we'd have to push out the bone marrow retest until later in the week or next Monday to allow blood levels to recover.  I was starting to suspect this was going to happen since I've seen no improvements in the daily blood numbers.  I have to be here to recover anyway, so I'm not too upset by the news.

The sun has come out for the first time in many days here this morning.  It was interesting that the weather matched my mood and health over the past week.  Mostly cloudy in the first part of last week, then dark and stormy on Thursday and Friday, and finally starting to clear Saturday and now bright sun.  The timing was great because of two great reasons today.  First, my family came back in and we were able to head outside for a walk and lunch.  We sat out by the lake next to the hospital in the warm sun and ate hospital cafeteria food; which is a step up from the hospital room service food.  I feel my appetite and and taste buds expanding and with the stomach medicine, most things are tolerable again.  It was a great way to spend my Sunday afternoon.

The second reason the I was happy for the weather was that back in Vero Beach, a bunch of friends of mine had organized a benefit for me that would include tennis, a silent auction, live music, and a bake sale.  Big shout out to Gary Schafer who already does so much organizing many groups at the club and who stepped up to lead the charge once again!  Then what started rolling as a small project started to snowball (ironic in Florida) into more of our friends becoming involved and blowing the event up into one where they were expecting around 300 people!  Since growing up in New York State, I've lived in Boston, just outside of Los Angeles, and Connecticut prior to moving to Vero Beach.  Nothing like this would have happened anywhere else I have lived as an adult.  My family is so humbled and honored to be a part of this town and have such amazing friends.  I was able to link up with the event briefly live over Skype and say a personal hello.  While the picture was grainy, I would make out many familiar faces as they panned the room.  I'm looking forward to getting back to see all of them in person.

The only other interesting health update was when my wife spotted a small circle on my upper left shoulder blade.  Thankfully she was there when I removed my shirt to head into the shower.  Again, the main enemy right now beyond the Leukemia is infection.  They had the infection control Dr., who was already assigned to my case last week when I had a low-grade fever, stop by to examine it.  He measured and made record of it, ordered immediate tests for staph and strep and will monitor closely now.

Spent the evening with my mom, she brought me a nice homemade meal and we watched the Olympics.