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.  

Mets Day 227 - Hurricane Sandy clean-up

To help the Thanksgiving tryptophan wear off, at 6 am of Friday morning I drove three of my children (Chelsea, Spencer and Garrett) to New Jersey to assist with the cleanup from Hurricane Sandy.  We were joined by more than a hundred others from several Mormon congregations in Arlington and Fairfax counties.  The Mormon missionaries and churches in the New York and Jersey shore area had become local coordinators and command posts, in coordination with various government agencies and non-governmental organizations.  Any individuals could submit a request for assistance, and the coordinators would send volunteers to the location.  (A nice 8 min. video of volunteers from Boston assisting in Far Rockaway is here).  I knew that I would be limited in what I could do, but I believed that it was important that my children be give the opportunity to serve others in need. 

Upon our arrival at the local Mormon church that was acting as a command post, we donned our yellow "Mormon Helping Hands" shirts  and got our assignment.  An elderly couple who had lived near the water for more than 40 years needed help in cleaning their yard.  (Their basement had been flooded, but they and their grown children already had dewatered and emptied the basement.)  We arrived to a stunning sight:  a large yard filled covered with two to three feet of debris, including multiple boats:

We couldn't do much about the boats, but we started to sift through the debris, collecting the flotsam and jetsam from the 13 foot surge.  We collected and bagged the plastic and glass, and moved the dimensional wood, including 12x14 timbers more than 16 feet long that were used for seawalls:

We hauled it all to the edge to edge of the street an big piles for the county to pick up later.  Here is a photo of Spencer and me adding to one of the piles. 

It took between 15 and 20 people all day Friday and Saturday to clear this single yard, and create three debris piles that stretched more than 100 yards long:

By Saturday afternoon, we had the entire yard free of debris. 

I spoke with the homeowner.  He was most grateful for our assistance.  He was not Mormon; he said that he had attended a Presbyterian church in his youth, but the only time he went to church as an adult was for weddings and funerals.  He had two children with families whose own homes were damaged, and a third son who was disabled and living with them.  I met most of the family, and they were amazed that we would come out and serve complete strangers.   

We went home tired and dirty, but feeling good at having helped those in need.  I was especially grateful that I could join my children in service, and in teaching that when we are serving others, we are serving God. 

Mets day 222 - Another sleepless night

I could not get to sleep last night.  I took the Ambien CR as usual, did the usual nighttime prep activities, including catheterizing and putting on the Depends, prayed with Jennifer and individually, then settled in at around 11:30 pm.  I think must have taken a placebo, or worse yet, a stimulant.  I tossed and turned, got up multiple times, went to the bathroom, etc.  I was physically tired, but could not sleep.  It wasn't like my mind was moving or that I could not get into a sleep state; it's just that I could not actually fall asleep.  I kept looking at the clock and thinking I was in a time warp, because the digits were not changing.   By 6 am, I was utterly exhausted but still sleepless. 

I'm in no condition to go to work today, or otherwise have deep thoughts.  Even typing this blog note brings a cascade of errors.   I'm yawning every 30 seconds, and hoping that maybe I can take a nap.  Usually I do not nap well, but I'm going to find an eye mask and ear plugs and give it a try.

I've been on the Ambien CR for about 10 days now.  This is the third or fourth time that I have had an exceptionally poor night's rest.   I think that I'm going to go back to the doc and see what can be done about it, or whether there are other formulations that might be better for me. 

Meanwhile, on Friday I was told that the insurance companies that are supposedly processing my disability applications have yet to receive any paperwork for an of my doctors.  In fact, according to the insurance companies, the University of Chicago Hospital and Dr. Steinberg have no record of my having had surgery.  I guess I must have imagined the whole thing.  I do recall being under some pretty powerful narcotics, but I thought that was only after they cut me open and rearranged my innards.  So I'm starting the process of collecting all of my medical records myself and will send them to the insurance companies.  Yes, I will keep copies, because I have zero confidence that they will acknowledge receiving them, or process them correctly, or make a correct determination regarding my benefits.  I despise bureaucracy generally, and insurance company bureaucracy in particular. 

Mets Day 219 - searching for solutions

Yesterday I sent the following email to Drs. Mark Schoenberg and Trinity Bivalacqua, the surgical urologists at Johns Hopkins who have been following my case:

I am still dealing with nighttime incontinence and the attending sleep deprivation.  Do you have any solutions?  Per Trinity’s instructions, I continued with CIC through October, ending on Nov. 5.  I have limited my fluid intake after 7 pm, and avoided irritants.  I typically will go to sleep at around 11:30 pm.  I find that I am incontinent regardless of whether I get up and void or not.  Once I start to leak, I find it very difficult to go back to sleep. 

Last week I met with a psychiatrist specializing in sleep disorders, and she found no psychological reasons for my sleep deprivation.  She prescribed Ambien CR 12.5 mg, which has helped me sleep through my leakage episodes, but I am still adjusting to it.  Plus, I still am not feeling well-rested.  I am trying to determine if this is just the way it’s going to be, or if there are other options.  Should I resume working with a physical therapist?  Would it make sense to schedule a consultation? 

With the coming week being Thanksgiving, I might not receive a response until after the holiday.  I really would like to see if there is some additional solution to stop my nighttime incontinence. 

I also exchanged emails with my oncologist, Dr. Aragon-Ching, who confirmed that it was ok for me to take a baby aspirin each day, since a few studies have suggested that is the single most effective way to inhibit microscopic metastatic cancer from forming solid tumors.  We had talked about taking baby aspirin prior to my surgery, then had decided to hold off while I was recovering and subject to further procedures.   

On the disability application front, yesterday I was advised that both insurance companies say that they have received no documentation from any doctors.  I submitted the forms six weeks ago.  I suspect that the insurance companies are not eager to part with their funds, and are slow-walking my applications.  It looks like I may need to personally gather the paperwork and send it in.  However, I'd expect that, after I do that, the insurance companies will tell me that they need to get the official file, and make me wait longer.  I had hoped to have a decision by the end of the year so I could have some clarity on my relationship with my firm, but that looks less likely now.  

I also met with my firm's benefits coordinator to explore options should I stop working full time.  She explained that, generally speaking, as long as a partner is working at least 50%, that partner can continue to pay for health insurance through the firm.  (As a partner, I receive no subsidy or discount for health insurance; I pay over $20,000 per year for my family's health insurance.)  If a partner was to work less than 50%, then the partner would not be eligible for ongoing health insurance.  I asked if the rules were any different for someone on disability, and she said there were limited exceptions, such as the one I have been using this year.  If I am no longer eligible for health insurance through the firm, I have the right to continue my coverage through COBRA, which lasts for 18 months.  The cost for COBRA is essentially identical to what I am now paying.  If I am disabled, my COBRA rights can be extended an additional 11 months, up to 29 months.  After that, my insurance options are either to go onto Medicaid, or join one of the new insurance pools being set up under Obamacare, or either Jennifer or I get a job that has insurance benefits.   

Jennifer quotes Sonny and says that everything will be all right in the end; if it's not all right then it's not yet the end.  Uh huh. 

Mets Day 216 - a good cry

I occasionally am asked how I maintain a positive attitude.  Jennifer likewise is asked how she is holding up.  Last Sunday at church, someone asked her how she made it look so effortless.  It is not effortless, however.  At times, I feel that I or other members of my family are teetering on the brink of exhaustion, despair, and depression. 

There is no magic formula, no secret way to avoid the turbulence in our lives.  For me, I find that there is comfort in accepting that I cannot control most things in my life.  I cannot control my cancer.  I cannot control whether I live, or die.  I cannot control other people, including their feelings or actions.  I can control how I react to my disease, or how I cope with my chronic exhaustion, or how I interact with my family members and friends. 

I have found it difficult during the course of my disease to not be a taker, a needy person who sucks time and energy from others, and who does not counteract that taking with an equal supply, or greater, of giving.  I find that serving others is a balm to my soul.  I understand that there is a time for all things, a time to serve and be served, but I hope to maintain a balance.  In the past year, I feel like I have been more a taker, and less of a giver, and that has caused some internal discontent.  I compensate by trying to help out when I can - doing chores around the house, or helping the kids with fixing their cars, or assisting Kirsten with her college selection process.  Teaching at church, or mentoring others at work, helps rebalance my spirit.  I am grateful when I am given the opportunity to serve.

I sense that Jennifer is being drained in her role as my primary caregiver.  It is a terrible burden to watch a loved one fight a chronic health battle, especially when there is little that she can do that directly influences the outcome.  Her frustration at her powerlessness to cure my cancer is in addition to of all the things that she ordinarily does as the primary caregiver for our family -- the transportation, logistics, and the emotional anchor of our home.  She frequently does not go to bed before midnight, then wakes up each morning at 5:15 am to get our two younger kids out the door to Seminary and school.  Hers is a heavy load.  It is not effortless. 

In addition to her "normal" activities, and being my primary caregiver, this fall Jennifer returned to school to work on her master's degree in social work.  At times, her school work takes more time that she wants to give.  Jennifer's road is far more difficult than mine, because there is so much more to do, so many  more variables, and less clarity among the many choices she faces each day.  The differences between good, better and best are not always clear in the grey fog of daily life. 

Last night we had a long conversation (or as she put it, "a good cry") about the burdens that we are carrying.  I wish I could say that we hit upon a brilliant solution that would solve all of our problems, but I know of no such panacea.  There are no time outs in life; it is as relentless as a winter wind. Sometimes, the best thing we can do is to hug each other, shed some tears, then suck it up.   I guess it comes down to a simple choice, really: Get busy living, or get busy dying.

The best I can do is to try to maintain perspective.  For me, a total acceptance of the serenity prayer provides a deep and abiding comfort.  Accepting that there are so many things I cannot change relieves me of the burden of worrying about them.  The first portion of the second sentence of the prayer ("Living one day at a time, enjoying one moment at a time, accepting hardships as the pathway to peace") teaches me that there is joy to be found in the midst of opposition. The purpose of life, I believe, is to find that true and abiding joy, even as the sand slides through the hourglass of mortality. All mortal life ends with physical death; the challenge is to do good with what time God grants us.     

Mets Day 214 - Cancer diagnosed one year ago today

One year ago today, on Saturday, November 12, 2011, I noticed blood in my urine.  I saw it on only two occasions that afternoon.  The first time, it was a spurt of bright red blood, then normal-colored urine.  The second time, there was some more bright red blood, then a small clot, then normal urine.  Little did I know that my life as I knew it was about to change forever.  I called my doctor on Monday, November 14, and he referred me to a urologist, who I saw the next day.  The rest is chronicled in 157 blog posts.

Was it only a year ago?  It seems so much longer.  So much has happened since then:  6 weeks and two TURBT's to get a definitive diagnosis of pT2b; two weeks to figure out if saving the bladder was an option, and if not, whether to have immediate surgery or neoadjuvant chemotherapy; three an a half months of chemo, followed by the crushing news that chemo had failed and the tumor had metastasized; the scramble to get an immediate OR, and surgery on May 2 to remove the bladder, prostate and 61 lymph nodes, as well as the construction of a neobladder; the definitive pathology report that 12 lymph nodes were positive, accompanied by the news that I was at Stage IV, and there there was no known treatment for my cancer; the painful recovery from the surgery; the development of the stricture in the urethra, and the ongoing search (and unresolved) effort to fix it and be continent; all coupled with the high probability that my cancer will coalesce into untreatable secondary tumors that will kill me.

A year later, I continue to struggle with sleep.  Despite the new formulation of Ambien CR that I am taking, last night I was unable to go to sleep until about 3:30 am.  I do not feel well-rested, and continue to have a foggy brain during the day.  I have a hard time recalling facts, or events, or names and memories.  I yawn a lot.  I am rarely alert. 

The cascade of cancer's complications has led me to decide to apply for permanent disability, which likely will end my legal practice.  My cancer has caused me to reevaluate and prioritize my life goals.  I try to spend more time with family, and not defer until later things I ought to be doing now.  Spiritually, my life is richer, as I have a greater appreciation for God's mercy and grace.  I view each day as a gift from God, and am more grateful now for life than I ever have been. 

Mets Day 212 - new Ambien dose

On Thursday, I met with a psychiatrist who specializes in sleep disorders to help me find a different dosage of medicine that might help me sleep longer each night.  After an hour of interrogation about how I am coping with cancer (day by day), had I considered suicide (no), my family of origin (long story), and all the other things p-shrinks ask about, she concluded that, all things considered, I seemed to be doing ok under the circumstances. 

She said that the 5 mg dose of Ambien that my internist had prescribed would not be effective.  I'd already figured that out, which is why I scheduled the appointment.  She gave me prescription for a continual release version of Ambien, 12.5 mg.  She recommended the name brand, as the manufacturer supposedly had a proprietary method of releasing the does over time.  I thought that generics had to be identical to the name brand, but oh well. 

For the past two nights I've taken the Ambien CR, and I'm trying to decide what kind of a difference it is making.  I still wake up when I leak -- usually around 3 am -- so I get up and go to the bathroom.  Unlike before, for the past two nights I have been able to go back to sleep.  I may wake up every hour or so thereafter as I leak a bit more, but in between I seem to lost consciousness.  I'm not sure it's real sleep, however.  When I wake up for the day, I am aware that I have slept longer than before, but I do not feel refreshed.  Not quite drugged, but not totally there. 

For the past two days I have noticed that I don't run out of gas as early, but I do not have lots of energy, either.  I also have not found that my mind is any sharper.  I still find myself struggling to recall pieces of information that, before surgery, I would been able to easily recall. 

I'm going to give it more time to see how I adjust.  Maybe my body and brain is just so exhausted that it will take several days or weeks to begin to get better.  Or maybe this is the new normal.  Or maybe there is another drug or drug combination that might work better.  With the trial behind me, my main focus in the near future is to improve my physical quality of life:  more and better sleep; follow-up with urologists and physical therapists to see if the leaking can be stopped; continue to monitor my cancer to see if there are any distant metasteses, as well as any other efficacious (and not speculative) treatment options. 

Mets Day 208 - winners and losers

The jury returned a verdict today and ruled for my client.  We shook hands, then immediately left town and drove home.  Exhaustion and a desire to get home trumped any desire for a celebration.  I encouraged all of the team members to take some time off and enjoy their families.  That's what I plan on doing.  

I just watched some of the election returns, and it looks like when all the dust settles, not a lot will have changed.  We went through all of that for this?  Bah, humbug. 

Mets Day 204 - weekend pass

I'm back home for the weekend.  The jury is still deliberating, and will resume Monday at 10 am.  Some lawyers stress out thinking about coulda woulda shoulda, but for me it's quite relaxing because I know there's nothing more I can do to affect the outcome.  Waiting for a jury to come back is pretty light duty compared to the actual trial.

I drove home in time to see Kirsten run out the door with her friend Jane to go to CVS, then I had the house to myself because Jennifer was supporting Garrett for his high school marching band performance during halftime.  Spencer is at an AA meeting, then spending time with friends. 

I'm looking forward to spending some time with the family, plus doing some errands like early voting and getting the cars serviced.  I'll head back to Norfolk Sunday night and will try to catch up on my reading --- I've had Eric Metaxas's book about Dietrich Bonhoeffer sitting next to my bed for the entire trial, and have yet to read a page.     

Mets Day 202 - Halloween in Norfolk

Court was cancelled on Monday while the storm blew through.  Yesterday morning everything was back to normal.  The Norfolk area appeared to be spared major damage, but I have not gone out to look around, instead just walking to court and back each day.  The parties finished putting in evidence today.  Closing arguments will be tomorrow, followed by deliberations.  Hopefully, the jury will decide quickly.  I'm tired of everything associated with this trial, and ready to go home. 

The power went out at home on Sunday afternoon, and everyone was expecting it to be out for days.  Much to their and my surprise, power was restored by mid-day Monday.  I guess the derecho in June knocked down most of the limbs and weaker trees.  Jennifer said we lost only one other of the big oaks on our property, fortunately, far away from the house. [Edit:  over the weekend I walked our property and found that 8 big oaks had been knocked down.]  She also said that the basement sprang a leak underneath the outside portion of the main floor outside deck, but it could be worse -- we could be in New York or along the Jersey shore and have been flooded out.  I'll deal with that later. 

Spencer found a combination of mobile mechanics who came out to the house to work on the Explorer; once came out and removed the front axle differential, then discovered that the one Spencer and Jennifer got from the junkyard was the wrong type.  It took them three trips to the junkyard to finally get the right one.  By that time, the original mechanic had gone to Georgia, and two others flaked out.  He finally found a fourth one to come out and install the replacement differential.  The Explorer is once again road worthy, for now anyway.  Spencer is happy to be mobile again, and I am happy that I don't have to figure out how to finish that job.  Now we just need to figure out what to do with the wrecked Neon sitting in the garage, but there's no urgency with that.  

Kirsten is working on her college applications.  She's applying to about 10 different schools in Virginia, California, and Utah.  It will be interesting to see to where she is accepted, and her ultimate decision of where to go.  In my view, the least important criteria for choosing a school is the actual course offerings, since virtually all colleges have similar course content.  The thing that matters most to me is the size of the campus (and the classes), the motivations of the students, and how well she will fit into the campus.  There is a good chance that she will meet the person that she eventually marries in college, so her college choice can have a much broader effect than merely obtaining a degree.  I don't know how she (or anyone) can make a fully-informed decision about the "right" college to attend.  But she's been going about it the right way, and I'm proud that she is doing all of the work herself, and owning the decision. 

Mets Day 199 - riders on the storm

All weekend we've been watching as Hurricane Sandy approaches, and is forecast to merge with a low pressure system that my brother tells me dumped up to three feet of snow at the Utah ski resorts.  Currently wind is gusting at over 50 mph outside my hotel in Norfolk.  This morning Jennifer and I were watching the local news and were surprised to see flooding with our hotel in the background.  We looked out the window and saw the flooding about a block away.  I told Jennifer that it was time for her to head home, and fortunately she got home safely. 

This evening the judge's courtroom deputy called me to say that our trial has been cancelled for tomorrow, at least.  Our team is hunkered down at our hotel, which we are told has emergency generators in case power is lost.  I spoke with the family at home, and they say everything is battened down.  Fairfax County already has announced that school is cancelled for Monday and Tuesday.  Here's the email I sent to them last night:

"You may have heard that a hurricane is coming towards us in the next few days, and it will merge with a cold front and bring heavy rains and winds to the area on Monday, Tuesday, and Wednesday,  With all of the leaves on the trees, we are likely to have a lot of limbs and trees down throughout the area, and will lose power for several days, maybe a week or more. School likely will be cancelled for several days, too.  Here are some things to make sure you are properly prepared.  Please do them this weekend, and no later than Sunday night:

1.       Make sure the Jeep and Explorer are full of gas.

2.       Make sure the gas cans are full, too.

3.       Fill the large round orange drink cooler with water and put it on the kitchen counter

4.       Fill the bathtubs with water, so you can scoop water from there with a bucket and dump it in the toilet.  Get the buckets from the garage.

5.       Make sure we have enough batteries.  If not, buy some.  Make sure the flashlights work.

6.       Charge your cell phones.  Have your car chargers handy.  Once the power is down, the cell networks will be affected.  Texts are easier to get through than phone calls.  You can charge your computers, too, but the internet will be down. 

7.       Move the pool furniture into the gazebo

8.       Bring up the black grill and put it under the deck screen porch; we may use it to cook.  Put all other deck furniture under the screen porch, too. 

9.       Start eating leftovers and other perishable items in the fridge and freezer.  Once the power is out, limit the time you open the fridge and freezer.  Food will start to spoil within 48 hours. 

1.   Go to the ATM and have some cash available.

1.   Have the Glock and .22 rifle ready to defend against looters and zombies.  I expect some really scary people walking around Wednesday night, banging on doors and demanding food." 

Mets Day 198 - Happy 29th Anniversary

This weekend Jennifer and I are celebrating our 29th wedding anniversary.  She drove down to Norfolk to join me for the weekend, since the trial is dragging into a third week.  We are looking forward to spending some item together, even though it will be a working weekend for me.

I have had no real progress on the incontinence or sleep deprivation front.  My clinician has referred me to a psychiatrist specializing in sleep disorders to help me find a balance of medications that will help me get some longer sleep.  That, and following up with the urologists regarding the incontinence, is job one after this trial ends.  I feel like I am going to need to take some time off to recharge and focus on my health.

This trial has reinforced my perception that I am several steps too slow.  I do not feel as alert or tuned in as I would like, and have to struggle to stay focused.  Afternoons and evenings are especially difficult.  I am glad that we have such a great team down here, and that I am essentially a cheerleader. 

Occasionally I have moments of melancholy that this may be my last trial, but then I realize that I've spent 25 years practicing law.  My legal practice has been a means to an end, and the end has been to support my family.  I do not want the means to be my end.  I am reconciled to the idea of accepting disability.  The primary uncertainty is what the insurance company will say, and what will be the terms.  I have a feeling that they will not want to easily part with their cash.  But I'll worry about that later.  Now it's time to enjoy some time with my patient wife. 

Mets Day 190 - Ambien adjustments

For the past week I've been away from home, providing support to a team of attorneys from my firm in a large patent case. I've had some long days, and am rarely getting more than four hours of sleep. I've tried various doses of Ambien to help me get more sleep. For several days, I'd take 5 mg immediately before bed. Inevitably, I'd wake up when I start to leak, and then would toss and turn and never get back to sleep. I tried taking 10 mg immediately before bed, only to wake up  between 3 and 4 am again. I found it easier to go back to sleep, but when I work up, I felt less energetic than if I just had 4 hours of sleep. I assume I was not getting as much REM sleep than with a lower dose of Ambien. At other times, I've experimented with taking 5 mg immediately before bed, then another 5 mg after I woke up at 3 or 4 am. I found I could go back to sleep for a few more hours, but I felt like I was dragging around all morning.  And I've also experimented with not taking any all.  None is really a satisfactory result.  The experiment continues.

Mets Day 184 - trying times

I'm in Norfolk, helping other attorneys from my firm get ready for a big trial.  Since I have pulled back from doing any witnesses or otherwise having a speaking role, my self-described job is to be a a splatter screen, to protect the rest of the team from all of the crap that the other side will be throwing at us.  Several people have asked why I am doing this.  The main reason is out of duty and obligation to my client and co-workers.  I want to see this through.  The fact that my partner personally asked me to be here and assist him played a strong role.  And the fact that my scans were negative clinched the decision.

That's not to say that I was tempted to stay home.  Last Thursday night, Spencer and I spent about 6 hours under our old Ford Explorer, trying to change out the front differential axle.  We discovered it had a large hole in the bottom of it, probably caused by a rock, and all the fluid had leaked out.  I'm no mechanic, but even I could see that was not a good thing.  The seals were also blown; I discovered that after I fabricated a temporary aluminum patch, bolted it into place, and refilled the differential with 75W90.  We were trying to fix the axle so Spencer could drive the Explorer, since he wrecked his Neon the week before (turning left on a yellow light; the guy coming the opposite way sped up to make the light instead of stopping).  At around midnight, we found that the axle gearing was so badly damaged that we could not separate it from the CV joints.  We also figured out that the replacement axle that Spencer got was not compatible, so we packed it in for the night.  I was so exhausted that, when Jennifer and I were saying our nighttime prayers, I could not even form the words to finish a sentence.  Yesterday morning, I was very tempted to not come down to the trial, but duty and obligation won out. 

Trial starts on Tuesday.  It probably will last 2 weeks.  These will be trying times.  I actually enjoy the adrenaline and crucible of jury trials, but then again, I was dropped on my head several times as a child.  Aside from the excellent people with who I get to work, trials are the part of my legal practice that I think will miss the most. 

Mets Day 179 - Of Regrets and Resolutions

I spent this past weekend at our lake house with Jennifer and our good friends Bill, Bernice and Cynthia.  Walter could not make it due to work commitments.  It is a good thing to spend prolonged time with close friends.  We talked, laughed, comforted each other, ate good food, played games, went boating, and applied balm to our souls.  Good friends are precious to have, and I am grateful for them. 

Last night, after they left for home, Jennifer and I started listening to some of the talks from our church's semi-annual general conference.  Twice a year, regular Sunday church meetings are cancelled, and church members are instead asked to listen to or read ten hours of talks broadcast and streamed from the church headquarters in Salt Lake City.  (A link to the main page for these talks is here.)  One announcement that caught my attention was that the church has dropped the age for missionaries to serve from 19 to 18 for young men, and from 21 to 19 for young women.  An LDS mission is voluntary and self-financed; each young man or woman is encouraged to prepare and save.  The window for service is now between ages 18 (or 19 for women) to about age 26.  If they are deemed ready and worth by local church leaders, then they may be sent anywhere in the world for 18 months to two years.  That means that Kirsten could leave on a mission in as soon as a year and a half, should she choose to go, and Garrett, should he so choose, could be leaving on a mission in less than four years.  Time does fly by.

One of the talks that penetrated my soul was an address titled "Of Regrets and Resolutions," by Dieter F. Uchtdorf.  (I don't think the speech has been transcribed yet, but video or audio of it is available here.)  Elder Uchtdorf was raised in East Germany, eventually moved to West Germany with his family, joined the church, and was a commercial airline pilot before being called as an apostle about 10 years ago.  He spoke of how precious years on earth, in the eternal perspective barely amount to the blink of an eye.  He built his sermon around the regrets commonly expressed by the terminally ill:  I wish I had spent more time with the people I love.  I wish I had lived up to my potential.  I wish I had let myself be happier. 

On spending more time with the people I love, Elder Uchtdorf said that men in particular regretted having spent so much time on work that they lost out on choice memories that come from spending time with family and friends.  As my faithful blog readers well know, I have recently been contemplating my work/life balance, which has been magnified by both the fact that I have Stage IV cancer, and that I continue to suffer from sleep deprivation due to my malfunctioning neobladder.  Last week I spoke with one of my partners, who strongly encouraged me to apply for and take the disability, and spend time with family and friends.  Other partners have likewise encouraged me to do so.  On Friday, I signed the forms and sent them in.  I have not yet figured out what I will be doing, but I intend to spend much more time with family and friends.  Hearing Elder Uchtdorf speak about the importance of doing that confirmed the correctness of my decision. 

On living up to my potential, Elder Uchtdorf said that when terminally ill patients looked back on their lives, they realized that they never lived up to their potential, that "too many songs remained unsung."  He added:

"I am not speaking here of climbing the ladder of success in our various professions. That ladder, no matter how lofty it may appear on this earth, barely amounts to a single step in the great eternal journey awaiting us. Rather, I am speaking of becoming the person God, our Heavenly Father, intended us to be.... Our Heavenly Father sees our real potential. He knows things about us that we do not know ourselves. He prompts us during our lifetime to fulfill the measure of our creation, to live a good life and to return to His presence.  Why then, do we devote so much of our time and energy to things that are so fleeting, so inconsequential and so superficial? Do we refuse to see the folly in the pursuit of the trivial and transient?"

My faith has helped me keep a balance between the trivial and the profound.  I know that, in the long run, my work pales in comparison to my relationships with family and friends.  I believe that my soul is eternal, and the essence of what I am will not be extinguished when my body finally gives out.  I find great comfort in that belief.  My challenge, as underscored by Elder Uchtdorf, is keeping that perspective and balance each day.  After singing the law for more than 24 years, I am now trying to decide what other songs I want to sing. 

Elder Uchtdorf's last point, about being happy, was consistent with my attitude.  He emphasized joy in the journey, relating how sometimes he and his wife would go for a bike ride, and the competitive side of him would make him want to go faster, be better than the last time they rode a route.  His wife would encourage him to not focus on the finish line, but to enjoy the ride.  He said that we don't listen to music to wait for the end of the song, but to enjoy the melody, harmony, and variations as they occur.  Life, he said, is better lived if we view it like a song.  "No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy if only we will see and appreciate it. Perhaps we should be looking less with our eyes and more with our hearts."

 Every now and then a conference talk seems to be directed specifically to me.  Elder Uchtdorf's talk was one of those instances.  I suspect I will be going back to those words with some frequency and I recalibrate my life and focus it on being and becoming a better man. 

Mets Day 175 - I dreamed a dream

Last night I had something most usual happen -- I had not one, but two dreams.  Having a single dream has been a rare thing post-surgery, unlike before, when I usually would have multiple vivid dreams each night.  I also used to be able to manipulate my dreams, sort of like a meta-dream (or Inception):  If I didn't like where a dream was going, I could consciously move it into another direction.  I have not had such dreams since my surgery, however.  Last night was the first time since May 2 that I recall having two dreams in one night.  The dreams seemed to come at the end of the night, after I'd gotten up a couple of times, meaning I managed to get back into REM sleep, which is something else I've missed. 

For you armchair Freudians out there, what do you make of these:

Dream 1:  I was walking up a gravel road when I saw a huge African lion at the top of the road.  I ran into an old seemingly abandoned house to the left of the road to hide from the lion, and called 911 on my cell phone.  While I was on the phone, looking out a rusted old screen door for the lion and thinking this was not much of a barrier, a woman walked by the house, followed by two camels and an ostrich.  She brightly called out that I should not worry about the lion because she was going to take it back to the zoo.  I watched as the woman, camels and ostrich flounced away towards the lion and out of my line of sight. I distinctly remember the bouncing of the feathers on the back of the ostrich back and thinking that it had an awkward gait.  The dream ended when I heard a tremendous roar and a shriek. 
Dream 2:  Waterworld meets Costa Concordia.  I was on a wrecked cruise ship in a post-apocalyptic world. I was aware that civilization has we knew it had ended.  People were scrabbling around the filthy ship searching for food and trying to get by.  There were no children; apparently the adults were sterile.  I was a newly arrived stranger; I had no family and knew no one.  I was offered the chance to impregnate a woman but declined because I had a vasectomy, plus I knew that I was still impotent from my surgery.  As I was walking away, the whole ship shifted, and I had to climb a staircase sideways. The dream ended as I was wondering if I could get out before the ship sank. 

Weird.

So did I feel more well-rested?  I'm not sure.  I thought about it when I woke up, and couldn't decide.  I used to be more indecisive, but now I'm not so sure.   

Mets Day 173 - Another scan at Fox Chase

Today Jennifer and I drove up to Philadelphia for another day of scans at Fox Chase Cancer Center.  This is a continuation of the Dendreon clinical trial, where I was randomized into the control group.  I don't get the experimental drug, but by staying in the trial I can still assist by helping to establish a baseline.  Plus, the scans are more frequent than insurance would typically approve, I get real-time results, and I get to continue consulting with another great group of doctors.  And I get to enjoy a nice car ride with my beautiful wife. 

So after the nurse accessed my port, she drew 14 (!) vials of blood -- so much that the needle clotted up on the 11th vial, and she had to put in a second access line.  She left in the access line so it could be used for the iodine injection for the CT scan.  That's always an interesting feeling as the iodine is injected into your system -- you feel this warm feeling starting in your chest, then quickly spreading throughout your system in about 10 seconds, ending with the most intense heat in the bowels.  I guess that tells me where I have the most blood.  After I emerged from the spinning magnetic donut, I was released from my pre-scan fast, so Jennifer and I ate in the hospital cafeteria that one of the nurses said was the best of the three on site.  Nothing special -- the other two must be pretty bad, I thought.

While we waited for the scan to be read by the radiologist and the report prepared, we chatted with Michael, one of the novices from the Chicago friary that hosted us in May.  After three years in the seminary, this summer he decided to shift gears and returned back to his family home in the greater Philadelphia area.  Jennifer had reached out to  him last night, and he was happy to drive over and see us.  We had several good conversations with him during my convalescence, and he had written a very kind and inspirational letter after we returned home.  It was good to visit with him again.  He is a good man. 

Eventually, we met with Dr. Plimack and one of her fellows.  Dr. Plimack gave us the results of the blood work -- everything within normal ranges -- and the CT scan.  No bottom line of the scan was there was "no measurable disease."  Comparing today's scan to my earlier scans, there was nothing noted in the bones, lungs, liver, or other organs that was suggestive that a metastatic tumor had started to form.  This is very good news.

The radiologist did report seeing a 3.3 cm lymphocele in the right pelvic area.  A lymphocele is an abnormal collection of lymphatic fluid that can occur following surgery.  Lymphoceles apparently are commonly seen following surgical procedures like mine in which large amounts of lymphatic tissue are removed. Lymph systems have a low concentration of clotting factors and has no platelets. Lymphatic vessels are devoid of smooth muscle and therefore lack any constrictive properties.  It's something that my doctors will continue to monitor; lymphoceles frequently resolve on their own, but if it continues to grow, it can be drained.  

We also discussed the  challenges I have been facing with the neobladder, the stricture, and the sleep deprivation.  I told Dr. Plimack that I have noticed during my twice-daily catheterizations that it has been getting more difficult to thread the catheter past the stricture, suggesting that the stricture is growing back.  I said how Dr. Trinity B. at Hopkins had said that there was a possibility that it might come back, and that it might take several attempts to get the scar tissue under control.  Dr. Plimack said that I should continue to try to remedy that issue, but if it was continuing to so adversely impact my quality of life, I might want to consider having my neobladder changed to an ilial conduit, e.g., an external urine collection bag.  I told her that I had been marked for an ilial conduit prior to my surgery, and left the decision in Dr. Steinberg's hands, so I was ok with that if an ileal conduit what the best option.  As I understand it, it could take at least six to nine months to see if the neobladder and stricture issues could be resolved before doing another major surgery.  Dr. Plimack agreed that doing the more incremental steps first made sense, but if the stricture issues can't be resolved, then an IC might be the way to go. 

Dr. Plimack also suggested that I consider taking a longer leave of absence from work while I tried to remedy the issues with my neobladder.  She suggested that taking the pressure off having to try to balance work while suffering from such ongoing sleep deprivation might be the best way to go.  I realized that I had been thinking of the disability decision as a one-time, irreversible decision, and that I should instead look at it as an interim decision.  There is precedent for that in my firm -- several years ago, another partner was diagnosed with a different form of cancer, took an extended leave to deal with it, came back for a year or so, had a relapse, took more time off, and is now working on a flexible schedule.  

 We also talked about whether there were any second-line therapies that I should be considering.  I said how Drs. Schoenberg and Steinberg both had encouraged me to find a second-line therapy.  Dr. Plimack said that, unfortunately, she was not aware of anything that she could recommend.  We referenced the fact that bladder cancer was a tricky cancer, with lots of different genetic mutations (more than a dozen) in most cases.  I asked whether it made sense to have my cancer cell genome mapped, and she said not yet, because right now it would not provide any actionable information.  Later, if I had a solid tumor, then it could be mapped relatively quickly.  She said that the genetic mapping technology is racing forward so quickly that even 6 months or a year will make a big difference in what information can be gathered and used. 

Dr. Plimack said that, as long as the urothelial cancer is floating around on the microscopic level in my lymphatic system, but not presenting as a solid tumor, there is no known efficacious treatment:  no chemo, no radiation, no diet, or other alternative therapy, had been shown to have any beneficial effect on my form of cancer.  We talked about options such as diet (e.g., no animal protiens, high flax seed oil, crushed asparagus, etc.), hypothermia (heating up the cancer cells), and so on, and Dr. Plimack said that none of those had been proven to work.  We talked about how some Stage IV cancer patients would sometimes grab onto any idea when western medicine could not offer any treatment.  Dr. Plimack was careful not to dismiss anything, but to instead say that followers of evidence-based medicine could not recommend any of them.  

This conversation was consistent with my earlier conversations with Dr. Apolo of NIH, Dr. Aragon-Ching at GW, and Drs. Kim and Santa-Maria at Hopkins.  Maybe they're all captives of our country's medical education system, but I tend to agree with them.  

All in all, this was a useful day with good news and good information.  It was worth it to drive up to Philly and back in the rain.  My next set at Fox Chase scans are scheduled for Dec. 4.