Mets Day 257 - Costa Rica Days 1-4 w/pix

Christmas in Costa Rica

I'm sitting on a balcony overlooking the thermally-heated pool at Tabacon Resort near La Fortuna.  The whole family -- Jennifer, the 4 kids, and the son-in-law -- flew in on Saturday Dec. 22 (TACA via El Salvador). The flights were uneventful; it's been a while since I've been on a plane where the passengers clapped upon landing, however. We rented a Mitsubishi Montero, a 7 passenger 4x4 (mandatory insurance increases the quoted rate by 50%) and found that we still had to put some bags on the roof. Fortunately I had packed a couple of ratcheting tie-down straps for that very purpose.

We stayed the first night in San Jose.   Chelsea took us to a restaurant that had been recommended by several people, and it ended up being on the other side of the city, so we got an unplanned nighttime tour of the city. We also did some shopping -- Josh had purchased a couple of unlocked quad-band phones, so we bought SIM cards with 200 minutes each (a minute costs about 7 cents when you do it that way, as opposed to $2.49 roaming with Verizon). We found that Walmart has conquered San Jose, so we stocked up on junk food for the car.

The next day, we got rolling at about 9:30 am.  Our goal was to go to La Fortuna and get to our next place of lodging by dark, stopping at whatever caught our eye along the way.   I read that driving in Costa Rica is kind of like sailing -- plan a destination, shoot to be there before the sun sets, and enjoy the journey.  The road from San Jose to La Fortuna is a winding two lane road with steep inclines, unexpected obstacles such as pot holes, people or large animals on the road, oncoming trucks or buses that play chicken (they speed up and act as if you should pull over when they approach), and are punctuated by one lane bridges.  The GPS would beep so frequently with an alert, "dangerous bridge ahead", that it became our running joke.  As we climbed out of San Ramos, we ran into thick fog with visibility of less than 50 meters.  We just followed the tail lights of the car ahead of us.  Here is a picture of the landscape once we broke out of the fog:

We planned to stop at a butterfly preserve, but the woman at the entrance told us to save out money because we wouldn't see many butterflies.

We kept on pushing until we reached the La Fortuna waterfall -- a spectacular torrent that comes shooting out of a hole in the jungle and plunges about 50 meters into a small pool.  Adjacent to it is a smaller bridal veil waterfall.  Here's a picture of Jennifer and me near the base:

The steps down to the pool are definitely not OSHA compliant -- about 500 steps of irregular height and width, ranging from 2 to 14 inches, and an occasional chain for a handhold.  My old knees protested as I slowly made my way down, but it was worth the trip.  At the bottom of the steps was a small pool of less than 10 meters across, which was the starting point for a river. Of course, Spencer, Kirsten and Garrett inched out on a log to a rock in the middle of the torrent, disregarding their mother's waving and hollering.  When Spencer slipped and nearly fell in, they finally got some sense and decided to inch their way back.  The hike back up was a workout. It was raining and I was sweating and by the time I got back it looked like I had been swimming.

We made our way into La Fortuna, where we scheduled a rafting trip for the next day on the Rio Balsa with Desafio Adventures.  We then bumped our way up a 9 km rutted road to Leaves and Lizards, a cabin reteat that had arranged our lodging at a local Tico farm.  Jennifer and I prefer staying at off-the-beaten-path places when we travel, so we were looking at a place like treehouses or the like. L&L was booked up, but the owner suggested that we stay at a local farm where the owners had just built a 4 bedroom guest house this summer.  They named it "Finca Tuete" and they could accommodate our clan. We met the owners at L&L, and followed them to their farm.  He was in his late 30s, she was in her early 30s, and they had two daughters, ages 11 and 6. They had about 75 milk cows, a bunch of beef cattle, and various other farm animals. They produce virtually all of their food on site.  We took a tour of their farm, the kids bottle fed some calves:

We made cheese with the warm milk straight from the cow, then ate it for dinner.  We spent Christmas Eve dinner with them, and gave the family some presents that we brought from the States. It has been a lot of fun, and better than almost any other place we could have stayed.  Here is a view from our guest house of he farm:

Yesterday, we all went rafting on the Rio Balsa. The kids all went in one raft, and Jennifer and I went with two other couples in another raft.  We were up front, and drank every rapid.  Although it was only a class 2-3, on the first rapid two people in our raft fell in.  I pulled in one, but the other had to be rescued by another raft.  Pura vida!  We had a lot of fun.

Today we had breakfast with the Tico family, then have spent the rest of the day at Tabacon.  The resort is beautifully landscaped with many pools of hot water, ranging from about 106 degrees down to the mid 90s. Our Christmas gift to the kids was massages at the spa, and they oozed out with silly grins on their faces.  We also had the lunch and dinner buffet, and we've stuffed ourselves like good Americans. Here's a couple of pictures of us in the warm waters, ranging from 95-105 degrees:

Mets Day 253 - The family Christmas letter

We did not succeed in getting out our traditional Christmas newsletter.  Maybe it will go out after the New Year, assuming we come back from Costa Rica.  Here's our current draft:

2012 was a life-changing year for our family:

Ken (50) has been diagnosed with and treated for Stage IV bladder cancer, including chemotherapy and multiple surgeries. See kwbcancerblog.blogspot.com. Ken is winding down his legal practice, and is focusing on family, friends, and faith. His sense of humor is still flourishing in the form of awful bladder puns. He's taking the family to Costa Rica over Christmas, and to Europe next summer.

Jennifer (49) continues to be the family's primary caregiver and is the anchor of the family. She's working on her Master of Social Work degree, learning that she's a digital immigrant, while the kids are digital natives. Jennifer finds solace in art therapy. She takes life one day at a time, savoring joy in the journey, and hikes in the woods with Nephi, our faithful standard poodle.

Chelsea (24) and Josh Slade (30) live nearby in Arlington, VA. Chelsea is in her third year of medical school, and plans to specialize in family medicine. She spent a week in Nicaragua on a medical mission in March. Josh is in his third year of law school, is leaning towards a criminal law practice, and currently works part-time as a DC public defender. We enjoy occasional family meals with them when they come up for air from their busy lives.

Spencer (almost 22) attends the local community college, where he's discovering a greater interest in physiology and nutrition. He was asked by the college's writing center to tutor other students. Spencer also works part-time as a peer mentor at a counseling and wellness program for young people in recovery, and does his best to keep our fridge empty.

Kirsten (almost 18) is in her senior year of high school, taking a heavy load of advanced classes, and applying to colleges across the country. She has discovered a passion for cosmetology and creating art, and continues loving bass guitar and reading. After Kirsten dyed and bleached her hair too many times to count, she now has grown to love an unexpected pixie cut.

Garrett (almost 15) is in his freshman year of high school, enjoys math and science, and is a percussionist in the school band. He's planning his Eagle Scout project, recently got braces and grew eight inches in the past year, towering over most of his family. When not playing games or reading, Garrett can be found playing more games.

Mets Day 250 - Slow reconciliation

I gradually have been reconciling myself to the fact that I will be leaving the full-time practice of law while I continue my ongoing battle with cancer and its cascade of side effects.  Perhaps I will be able to work part-time.  Perhaps it will be a leave of absence.  Perhaps it will be permanent.  I don't know.
In some ways, I think the uncertainty and lack of clarity is the most difficult aspect to accept.  I wrote earlier about my realization that my world view had been turned upside down, and I no longer had a recognizable framework for filtering life. I am still working on developing a new framework, but for now I have decided to consciously limit my event horizon to one year.  I will make plans for the next 12 months, but not beyond.

My rationale for a 12 month horizon is based upon the worst-case scenario:  If the next scans revealed that my cancer has metastasized into solid secondary tumors, I likely would die in the next 12-18 months, and the last 4-6 months would be pretty miserable.  Any plans that I would make for beyond that time likely would be unrealized.

I don't see this rationale as pessimistic or fatalistic.  It does not assume that distant tumors will form at a date certain, or even at all.  It merely provides a construct that I am currently able to accept.  It helps focus my plans on the near future, and releases me of worry about anything beyond that 12 month window.  Of course, the horizon is constantly shifting with each day.  It just means that I usually use my reading glasses instead of my distance glasses.

This is a fundamental shift for me.  For decades I have projected decades into the future, then charted out interim steps necessary to achieve my long-term goals.  I started that process at about age 14 or 15, when I began to become sufficiently self-aware to realize that my long-term objectives could drive my short-term choices.  I also realized around that age that my short-term choices could have long term consequences. 

At age 14, I got a job as a dishwasher at the Greycliff restaurant in Ogden Canyon.  A friend of mine named Chris D. had started working there a few months before, and said it was a good place to work.  Several other kids in my church congregation also worked there.  One was supposed to give me a ride home.  The first night I worked was a Friday night, and I spent five or six hours slinging slop off of dirty dishes and running them through a huge industrial dishwasher.  By midnight, I was soaking wet, exhausted, and ready to go home.  But Chris and the kid who was supposed to drive me home told me that the tradition at the end of the work night was for all of the staff to collect the leftover food, sit around a large table, and eat.  I was all for free food.  After we had polished off the leftovers, several joints were lit and passed around.  I was surprised when the kids from my church toked up.  I nervously ad quickly passed the roach clip along when it was handed to me, acutely uncomfortable with the situation. My ride showed no sign of leaving, and after an hour, I called my mom to come pick me up.  I told her what happened, she complained to the management who apologized and said it would never happen again.  The next night the exact same thing happened.  I quit.  Chris, however, stayed, gradually pulled away from his family, his non-using friends, and the church.  He got into harder drugs, eventually fried his brain with some bad acid, and spent the next several years in and out of jail. 

I understood then that short-term choices can have long-term consequences.  I began setting long-term economic goals -- good grades, a college scholarship, law school, join a law firm, become a partner, support my family -- and long-term spiritual goals -- LDS mission, temple marriage, a solid commitment to family.  Achieving those goals has been a lifelong effort. 

I had several future economic goals -- advancement in the law firm partnership, further development of client relationships, better funding for retirement -- and additional spiritual goals -- finish raising my family, serving a mission with Jennifer, strengthening my family bonds as my children we launched, married, and had grandchildren.  I have let go of the economic goals.  While I still hope for those spiritual goals, I do not look more than a year in advance. 

I am beginning to realize that my letting go of my additional economic goals is freeing me to pursue things that have greater importance.  Today, for example, I edited a couple of briefs from home, and was there to greet my kids when they came home from school.  I made a early dinner and we ate at around 5 pm, then we watched a Netflix show.  That would never happen if I was working a "normal" schedule:  I rarely got home before 6:30 or 7 pm.  The simple joys of spending time with family are so easily overlooked. 

Reorienting myself is a slow work in progress.  In some ways, I feel that I am reinventing, or more accurately, redefining myself.  That is a rare opportunity, and is a new and exciting and uncertain and unexpected consequence of my cancer.  It's not a bad thing, and may even be a very good thing. 

Mets Day 245 - Sandy service

I have been asked by my local church leaders to coordinate the volunteer efforts of our church congregations who want to go back up to New Jersey and muck out basements flooded by Hurricane Sandy.  What better way to spend a weekend?  Incredibly, there are a large numbers of people who want to do so, all on their own dime.  My job is to put together all of these volunteers, appoint a captain of teams of 10, can captains of 50, and captains of 100 (not that we'll have that many going this weekend).  As I wrote the others, "We're all volunteers here, so keep you expectations low, especially of me."

So far, my efforts have consisted of a number of emails and phone calls.  I can do this.  It's like the person who asked me knew that sitting in front of a computer and giving orders and organizing information was something that I have done once or twice before in my life.  Maybe I learned something useful while practicing law after all.  I just regret that I can't go back up this weekend, as I have another long-standing commitment, plus Jennifer and I have just started to come down with colds.

What I find most impressive is that people living comfortable cosseted lives and preparing for the holidays, are willing to drop everything, drive for hours, spend a day shoveling muck out a perfect stranger's basement for free, then drive back home.  The desire to serve others needs to be constantly nourished, especially in our youth.  Empathy, karma, selflessness, physical exercise, joy in serving:  There is no better gift anyone can give. 

Mets Day 241 - This and that

A number of people have reached out to me in response to my musings after Tuesday's negative scans.  Three commiserated with my realization that my traditional frame of reference for major life decisions was no longer relevant.  One advised me to accelerate my life, and do more of the things that I have deferred.  My mom told me about her brother, who has debilitating neuropathy and is unable to move, which puts my problems in perspective.  My brother-in-law told me to pull me head out of my butt. 

In two weeks, I'll be traveling with the whole family to Costa Rica.  We'll spend two weeks there.  Ain't never been there, they tell me it's nice.  (Who said it, what song?) Jennifer and I have been taking about going to Costa Rica for years, and while I was slowly recuperating from the surgery over the summer, we started planning it out.  All the stars aligned with being able to get all four kids and the son-in-law available for two weeks.  We toyed with the idea of an African safari, but once we saw the cost for 7 people, we decided Costa Rica sounded much more reasonable. 

Still no decision from the insurance companies.  I've been deferring a decision on my work until I get the disability decision.  I've sent them all of my medical records, five years of my federal tax returns, and everything else that they've asked for.  Earlier this week, my firm's HR department told me that the firm was changing its policies regarding partners continuing to be eligible for health insurance.  Previously, a partner had to work at least 50% to be eligible for ongoing insurance.  Now, as long as I remain a partner with the firm, I retain eligibility to keep buying the firm's health insurance.  That gives me more flexibility. 

No progress on the nighttime incontinence front.  Dr. Plimack at Fox Chance recommended that I seriously consider having my neobladder changed to an ileal conduit.  That would give me nighttime continence, but would have me wear an external bag for life.  People who have it get used to it quickly, and I'm sure I would too, but I'm going to wait a bit before I go down that path. 

I'm finding that Lunesta is working a bit better than Ambien.  Sometimes I don't get to sleep as quickly as I'm used to.  I wake up at around 4 am to empty my bladder, but am still leaking.  I usually manage to go back to sleep for a bit. A good night is more than 5 hours total.  The most noticeable difference on Lunesta is that I don't feel as drugged in the mornings. 

Mets Day 236 – Negative Scans

Jennifer and I spent today at Fox Chance Cancer Center.  Being in the control group of the Dendreon trial, the company pays for scans every two or three months.  I donated another bunch of vials of blood, had the CT and MUGA scans, then met with Dr. Betsy Plimack and her fellow.  They told me that the CT scan did not indicate any solid tumors.  Yay. 

The absence of bad news from the scan is good news, I guess.  Jennifer and I had the same reaction at the news, however:  we felt no great elation.  Instead, we nodded our heads, and waited.  Next?  This is my third round of scans, and the novelty has worn off.  We now are deep into enduring to the end, and having these ongoing scans is not a satisfying experience.  I think that we have accepted that the cancer – including the information from the scan – is wholly outside of our control.  A negative scan means that we continue to live in uncertainty.  A positive scan means that we have been given the certainty that the final year of my life has started.  

I realized this afternoon that I had been mentally preparing myself for bad news, and that those preparations had been a heavy burden to carry.  The negative scans did not relieve me of that burden; it merely deferred it until the next scan in three months.  In that sense, the negative scan was not a relief, it was just a deferral. 

I need to reorient my mindset.  Cancer is a chronic disease with widely different prognoses.  My form of metastatic urothelial cancer has no treatment, no cure, and a 90% mortality rate over five years.  Today I realized that, with every scan, I am waiting for the other shoe to drop.  I need to let go of that attitude, and get on with my life (so to speak). 

On the drive back, I told Jennifer that this disease has destroyed my mental framework for many of my life decisions.  Before Cancer, I worked to support my family, in furtherance of a commitment I made to myself, Jennifer, and to God.  After Cancer, assuming the insurance companies agree with my disability applications, much of the economic motivation for my working will be removed.  BC, I could make long-term plans for my advancement in my profession; AC, I appear to winding down my legal practice.  BC, I could plan for activities with my wife after my nest was empty; AC, there is a significant chance that I will not see my youngest son graduate from high school.  BC, Jennifer and I could talk about retirement activities, such as humanitarian service, church missionary activities, travel, doting on our grandchildren; AC, I may not see my grandchildren.  The scaffolding of my mental rubric has been inexorably changed by cancer. 

I am still groping at how to construct a new analytical framework for my life.  How can I make long-term plans when I likely will not have a long term life?  What should I do with my remaining time?  How can I be a better husband, father, and friend?  I feel that I am in some ways redefining myself, but I do not know the boundaries of my chrysalis or the duration of my metamorphosis. 

Mets Day 235 - First impressions of Lunesta

After three nights of taking Lunesta (3 mg), I'm still getting used to it.  I've woken up each night at around 4 am (usually when I leak), and have seemed wider awake than when I would wake up while taking Ambien CR.  But for two of the three nights so far, I've been able to go back to sleep for another couple of hours. 

When I wake up in the morning, I don't seem as drugged as when I was taking Ambien CR.  I assume that is because the Lunesta has worked its way out of my system, unlike the Ambien CR, which seems to take about 10 or 11 hours to be metabolized out of my system.  For the past two mornings, I have not felt quite as foggy in the morning as I was when using Ambien CR.  I also have not noticed the metallic or bitter taste that others have reported when using Lunesta. 

The quality of my sleep is not as clear, however.  I am aware that my sleep is the result of being drugged, and it does not feel natural.  While I think I'm getting a bit more sleep that I was using Ambien CR, but I still have not felt as alert as I did before surgery. 

It's still too early to make any definitive conclusions about Lunesta, however.  I'm going to continue with it and see how it works over a longer period of time. 

As far as the incontinence at night goes, I'm pretty sure that it is not the result of overflow incontinence.  That happens when the neobladder is not fully drained before going to bed, and the pressure of the urine causes leaking in the night.  I know it's not overflow incontinence because, when I void at 4 am, I am only producing about 200 ml, and I know that my neobladder can hold over a liter.  What I suspect is that, after several hours of laying down, the position of my ureterovesical valve (where my neobladder connects to the ureter) is such that it starts to leak.  The ureterovesical valve is OEM equipment; Dr. Steinberg removed my entire bladder, except for the ureterovesical valve, then sewed that into the bottom of the colon that he converted into the neobladder.  But for whatever reason, the valve is not working like it used to.  I'm going to continue to try to figure out the root cause of my sleeping issues. 

Mets Day 233 - Lunesta vs. Ambien CR

Yesterday I went back to the psychatrist who specializes in sleep disorders and consulted with her about my three weeks of experience with Ambien CR.  I reported that it generally helped me sleep longer than I had using just regular Ambien.  Instead waking up at 4 am or so and not going back to sleep, with CR I would still wake up when I'd start to leak, but generally would be able to go back to sleep.  I usually would wake up for keeps at around 6 am.  I would continue to feel drowsy and sluggish until about 10 am or so, as the drug slowly wore off.  I would not be huingry in the morning, but would be rqavenous for the rest of the day.  I also consistently felt like I had cottonmouth, or was on the verge of getting a sore throat.

The quality of my sleep, however, still left something to be desired.  I could tell it was a drug-induced sleep, and my mind did not seem as rested after 6 hours of sleep under CR as with 4 hours using the regular stuff.  It's strange to feel and hard to describe.  Each day, I would feel even more tired, but less sleepy, if that makes sense.

Every fourth night or so, I found that I would be unable to sleep at all.  I would be physically exhausted,  but would lie in bed and toss and turn and simply would not go to sleep.  I'd get up, go the bathroom,. sit in the hot tub, lay back down, toss and turn some more, get back up, lay in the recliner -- anything to try to sleep.  I might doze, but no REM sleep.  In the 21 days since I started taking CR, this happened 4 times.  

The doctor suggested that I try Lunseta, and see if that worked any better.  I'm not particularly a fan of drug shopping, but decided this was different.  I tried Lunesta for the first time last night.  I went to sleep at around midnight, and at exactly 4 am -- as if an alarm went off -- I was wide awake.  I think it was in association with a leak, but can't be sure.  There I was, laying on my pillow, eyes wide open, wondering why I couldn't go back to sleep.  I wondered if there was a stimulant in Lunesta that was timed to go off after the dose was done.  It was distinctly unsatisfying.  I'm going to give it another go tonight and the next few days, but the initial results are not promising.

On Tuesday, I go back to Fox Chase Cancer Center for another round of scans.  I was telling Spencer today that each scan event is strange, because the only news it can bring is bad news.  The scans can't tell me that I am cancer-free, because that's not what they are designed to do, and because the scans are not fine enough to detect microscopic metastatic cancer that is almost certainly floating around in my lymphatic system.  So if the scans are negative, it just means that I'm in the same place that I was the day before -- waiting for the next shoe to drop.  And if the scans are positive, then it means that I really can't postpone updating my will.  I am beginning to appreciate why many cancer patients would rather not know all of the details of their disease -- for them, it's better to live in ignorance, and not have their hope burdened by reality.