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.