Tuesday, March 19, 2013

Mets day 341 - Clear CT scan

Jennifer and I got up at 5:20 am this morning to drive up to Fox Chase Cancer Center in Philadelphia.  Even though I was randomly placed in the control group of the Dendreon clinical trial, the company still covers the cost for me to have regular blood work, CT scans, and to meet with Dr. Plimack, a wonderful FCCC oncologist.  The downside is the long drive to and from Philly, including the rush hours of up to 4 cities (DC, Baltimore, Wilmington, and Philly).  It is made slightly more bearable by stopping for a real Philly cheese steak on the way home, all the better since I need to fast prior to my CT scan. 

Anyway, today’s CT scan detected no evidence of secondary tumors.  Good news.  Dr. Plimack said that the odds of recurrence are highest in the first year after the initial mets diagnosis, so the longer I can go without recurrence, the better my odds.  It was in mid-April of last year that I had the CT and MRI that showed that my chemo had failed and that my cancer had spread to my lymph nodes.  My surgery was on May 2, and we go the pathology report showing 12 positive nodes on May 15, 2012.  So depending when one starts measuring the commencement of metastatic activity from, it's been nearly a year already.  

The CT scan did detect an odd collection of the CT contrast dye in my inferior vena cava, the main vein that goes through my abdomen.  The radiologist and Dr. Plimack both suspected that it was just a random bunching of the dye, but she ordered an ultrasound just to be sure that it was not a blood clot.  That took another couple of hours, and it revealed nothing.  The tech and radiologist agreed that my IVC looked perfectly normal. Bring on the cheese steak with onions and mayo - no stroke today!

We once again discussed my ongoing night time incontinence.  Dr. Plimack reviewed the information about Duloxotine and saw little downside to my trying it, but recommended that I speak with a urologist to confirm and get a prescription.  She also suggested that I consider “trading in” my neobladder for an illial conduit – a major surgery.  I said that I was giving my neo until May 2013 to shape up, then I’d consider the IC surgery.  I would wait until after our Europe trip, however, to actually do the trade in, so it would not be until August or later.  I’m getting more reconciled to going through with that, although I do not look forward to the surgery or recovery. 


Sunday, March 17, 2013

Mets Day 339 - Lessons from a year of mets cancer

My church has a lay clergy.  Members of the congregation take turns giving sermons each Sunday.  Today was my turn.  Here's my prepared remarks:

I was diagnosed with urothelial cancer on November 22, 2011.  Three surgeries and months of chemotherapy failed to eradicate the cancer.  On May 15 of last year, Jennifer and I were told that the cancer had metastasized outside of my bladder.  There is no cure for metastatic bladder cancer.  Doctors will not give me any odds, but tell me that between 85 to 90% of patients with metastatic bladder cancer die within five years of diagnosis. 
I would like to share with you some things I have learned in the past year.  But let me first review how the seeds of the gospel were planted in the field of my soul.  
My mother was born in Holland in 1934, the sixth of seven children. Her mother was an indomitable woman who was unafraid to challenge the teachings of the Dutch Reformed Church.  In particular, she challenged the priests on the doctrine of original sin, refusing to accept that her babies were born into a state of sin.  She eventually refused to have her three youngest babies -- including my mother -- baptized, even though the priests warned her that she was condemning her children's should to everlasting torment should the die without baptism.  For years, my grandmother prayed that one day, she might find a church whose teachings were more enlightened.

After World War II ended, a retired couple from Ogden, Utah, volunteered to serve as a missionary couple.  They were sent to Holland, where in 1947 they knocked on the door of the my mother's family in Hilversum.  My grandmother challenged them on their church's teachings on original sin, and learned that the Mormons believed that each person is held accountable for their own actions, and not for Adam's transgression and fall from grace.  Having passed that screening test, the missionaries stayed at the family home for hours, teaching my grandmother, then repeating the lessons as each family member returned home from school or work.  

My grandmother was not an easy sale, however, and spent more than a year investigating every aspect of the Mormon belief system.  The original missionaries who made that first contact eventually went home, never having baptized a single person while on their mission. Other missionaries came and continued teaching my mother's family; I am named after Kenneth Bacon, one of those missionaries.  In 1948, my grandmother, mother, and aunt were baptized into the Mormon church.  Over the next two years, the rest of my mom's family joined the church.  Were it not for those many missionaries, I'd be speaking Dutch today. 

In 1951, my mother's family emigrated to the U.S., taking a ship to New York, and a Greyhound bus to Utah, where they settled in Salt Lake City. My mother met my father and were married in 1953. My father eventually left my mother and the church, leaving her to raise her three children as a single parent.  Her faith never wavered, however.   

I was born in 1962.  I grew up on a small farm in Ogden Valley, five miles from Huntsville, a town of 500.  I was taught that each person is encouraged to develop his or her own independent faith -- to study the church teachings, pray about them, and to decide whether or not you believed them and were willing to accept them.  I was taught that no one should rely on borrowed light.  (See Elder Donald L. Staheli, "Securing Our Testimonies," Ensign, November 2004, page 39.)  I was taught that each person must decide what is true.  My mother encouraged me to investigate and to decide for myself whether those things were good and true.  This has led to a lifetime of critical examination and reflection, and the development of a core set of spiritual beliefs.

Two weeks after I turned 18, I started college classes at the University of Utah.  Every other weekend or so I would drive 40 miles north to my home with a load of dirty laundry and attend church with my mom.  In the Spring of 1981, a senior from Ogden High School named Jennifer asked me to a school dance, and we started dating.  A few weeks later, I broke my leg while riding my motorcycle, and had to withdraw from many of my college classes and return home to recuperate. Jennifer came over each day after school, and we had a number of intense discussions about religion and everything else under the sun.  We pushed and challenged each other on all aspects of our beliefs.

  
In large part as a result of those discussions, a few days after my last cast was removed, I put in my application to be a volunteer missionary – the bar was much lower then -- and was sent New York City.  I spent nearly a year in the South Bronx.  My spiritual understandings and depth of my personal convictions were greatly strengthened as a result of that missionary service.  Jennifer, meanwhile, went to BYU and resisted getting married.  We married in October 1983.  I finished at the U, she finished at the Y, and in 1985 we moved to Arlington to attend law school.  It’s been 28 years since we lived in Utah.  I was in Utah last week, and felt like Abraham returning to Ur: a stranger in a strange land.  
I have spent decades balancing between providing for family by practicing law, and trying to live my life consistent with my convictions.  I was comfortable in my assumption that I had decades of life in front of me.  We bought 5 acres in Great Falls in 1998, designed and built our house, and moved here in 2000.  For he past 13 years, we have raised our children in this ward family.  Many of you have shared our joys and sorrows, and we have been comforted by your support.  We made plans and saved for retirement.  Jennifer and I spoke often of how, once our nest was empty, we would like to serve multiple missions. 
There is a Yiddish proverb: "Man plans, God laughs."  My life seems to be divided into two segments:  BC, or Before Cancer, and WC, With Cancer.  The fact that it is bladder cancer makes the British meaning for WC especially appropriate. 
  
My prior assumptions that I would live into my 70s, 80s, or 90s have been utterly shattered.  I have had to reevaluate my life faced with a greater than usual likelihood of imminent death.  I have learned to a degree I did not previously understand of the truth taught by King Benjamin that I depend upon God for all that I have. (Mosiah 4:19).  Mosiah 4:21 says that we are dependent upon God for our lives “and for all that we have and are.”  For all that I have and am, I am solely dependent upon God, and not the arm of the flesh.  
Until my cancer diagnosis, I did not understand what that really meant.  Now I am acutely aware that there is nothing that any human can do to prolong my mortality.  The realization that my life is in the hands of the Lord has been both humbling, and unexpectedly liberating.  Every day, I give thanks that the Lord has given me another day with my family.  
Growing up, I remember a poster that my mom had in the house.  It was a picture of a crying baby with a bowl of spaghetti on his head, with noodles and sauce dripping down his face.  Underneath the picture was a verse from Psalms 118:24: “This is the day the LORD has made. We will rejoice and be glad in it.”  On some days, I know exactly how that baby felt.  
On those days of self-centered ingratitude, I am reminded of how unworthy I am of the great gift of the gospel of Jesus Christ.  I know that I am imperfect, and that my sins are as scarlet, but that through the atonement of Jesus Christ, my soul can be made white as snow (see Isaiah 1:18).  I am keenly aware of the great gulf between me and the peace of Abraham’s bosom (see Luke 16:19-31). At times I think that I am a man of grief and sorrow, living a life of pain.  But Isaiah taught us that it is the Savior who was “a man of sorrows, and acquainted with grief” (Isaiah 53:3).  He has descended below everything I have endured, or will endure.  (D&C 122:1-8).  I can cast all my care upon Him, because he cares for me (see 1 Peter 5:7).
I do not rail against God for what I cannot control, but rather seek to accept that my mortal life is but a short moment to God.  I am comforted in the knowledge that, after my body dies, my spirit will continue to exist, possessing all of the knowledge and experience and tendencies that it now has. Like Job, I believe that, though my body will fail and be corrupted, yet in my resurrected flesh shall I know and behold God (Job 19:26).

I am grateful that my family relationships will continue after death.  When Jennifer and I were married, we were sealed to each other for time and all eternity, subject to our faithfulness.  (D&C 132:19).  I have at times joked that eternal marriage can either be a blessing, or a threat.  Let me be clear:  the promise of eternal marriage is among the greatest gifts of God. 


[Appreciation for Jennifer]
From time to time, I contemplate death.  Not with fear, or grief, or anger, but with an understanding that accompanies the restored gospel.  Brigham Young taught that the spirit world is right here, and that the spirits of the departed do not go beyond the boundaries of the organized earth.  Discourses of Brigham Young, p. 577 (Widtsoe, John A. (1925)).  He added that if the Lord should touch our eyes that we might see, we could see the spirits as plainly as we now see each other.  While in the Temple, I have been blessed to have had the Lord touch my eyes, and have seen those spirits as plainly as any living person.
I know that, in that period of time where I am dead and my family continues in mortality, I will be able to see them, even if they might not always be able to sense my presence.  Joseph Smith taught that "the spirits of the just . . . are not far from us, and know and understand our thoughts, feelings, and emotions, and are often pained therewith." (Teachings of the Prophet Joseph Smith, p. 326). I know that I will see my children grow, and see my grandchildren, and share in their joys and sorrows, even if I have no mortal body, because my spirit is eternal.
  
[Comfort in this knowledge]
Opposition and Duality 

I am utterly comfortable with coexistence of the rational world of science and law, and the non-rational world of my religious beliefs.  I try to be in the world while not of the world (see John 17:6-16).
The parallels and contradictions of my life infuse my being.  My life is an ongoing journey of learning to yield to the enticings of the holy spirit, and put off the natural man.  I am fascinated, and a little frightened, by the fact that, as I grow older, I must be become more childlike:  submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord sees fit to inflict upon me.  (Mosiah 3:19).  
There is opposition in all things.  Without opposition, there could be neither good nor bad.  There would not be righteousness or wickedness.  There would be no happiness or misery. There would be no life or death.  There would be no sense or insensibility.  Instead, everything would be a compound in one, and remain as dead.  (2 Nephi 2:11.)  
Lehi taught his children that we are agents unto ourselves, to choose to do good or evil.  (2 Nephi 2:27).  Through our choices, each person can bring light into the world, or darkness.  God permits his children to make those choices, even though it can cause great harm and suffering.  This is the agency of man, and the condemnation of man (D&C 93:31).  

This duality has permeated all aspects of my life.  The friction between the things of Earth and the things of Heaven has helped smooth the rough stone that I am.  The slow illumination of the gospel upon my soul has taken decades.  I have so long to travel, and so little time for the journey. 
Testimony

I believe in God, and that He is the creator and father of my spirit, just as he is the father of all spirits.  Abraham and Jeremiah taught that that God knew me before I was born, and that I knew Him before this mortal life. (Abraham 3:22; Jeremiah1:5).  I believe that I formed my personality in that pre-mortal life, that I understood that my Father had a plan for my life, and that I knew and embraced that plan.  Part of that plan was that I would be sent to earth with a veil shrouding my memory of that pre-mortal life, so that I could learn to live by faith.  
Faith is a belief or hope of things that are not seen, but are true. (See Hebrews 11:1, Alma 32:21).  I believe in many things that I have not seen, but which I believe to be true.  I believe that I can communicate with God through prayer, and that He communicates with me through feelings, impressions, dreams, and the actions of others.  I have had many spiritual experiences that cannot be rationally explained.  Those experiences have created in me a deep and abiding knowledge that God is real, and that He loves and cares for us, his children.  
Gratitude

I am profoundly grateful that I can hold to the hope that these gospel teachings have given to me.  I am the fruit of seeds planted by the hope of my grandmother, by missionaries in the 1940's, and my own mother's faith.  I have spent 50 years laying up sheaves for the harvest.  I do not know if I will be harvested soon, but I am deeply comforted by the sustaining faith that has been many years in the making. 

Friday, March 15, 2013

Mets Day 337 - Back online

Several people have commented on the absence of recent blog posts.  Sorry.  Here are some of the things that have been going on since my last post:

There's no change in my sleep patterns.  Some nights are miserable, with only 2 or 3 hours of total sleep.  A good night is 5 or 6 hours of sleep.  There is no pattern to when I get poor sleep or when I get barely tolerable sleep.  I don't think I've slept more than 6 hours straight since my surgery last May.  I can feel a cumulative corrosive effect on my memory.  More and more often, I am pulling blanks for short term or long-term recall.  I'm way too young (50) for dementia.  Post-it notes and electronic calendar items help.

I was in Utah between March 7-13.  I flew out with my daughter, who had been admitted to Utah State University, and thought it might be a good idea to look at the place.  (Jennifer had flown out on March 5 on a previously-planned trip to visit her dad on his 75th birthday.)  The three of us spent most of March 8 on campus.  Kirsten flew home over the weekend, and Jennifer and I spent several days visiting family and friends.  It was good to catch up with so many people.  It reinforced to me how important family relationships are, and how they need to be constantly tended to thrive.  

I've cycled down from work, and go into the office maybe once a week.  I monitor my email from home, so my physical proximity is less important.  I am grateful that I can continue keeping my finger lightly on the pulse of my various matters, while having the time to try to address my ongoing physical issues.

Next Tuesday, March 19, I have CT and MUGA scans at Fox Chase in Philadelphia.  I have found that the best way to deal with an impending scan is to not think about it too much.  A scan either gives me bad news (my cancer has metastasized to detectable levels), or that it can't detect any secondary solid tumors.  It can't tell me that I'm cancer-free.  Since there is no known effective treatment for any secondary tumors, maybe it's better not knowing what's going on.  Not knowing conflicts with my training to acquire and act on information, so I keep getting the scans.  But I do not look forward to them.

I'll also ask the docs at FCCC about Duloxetine for incontinence, as I discussed in my last post.  I also have appointments with my local uro on April 3 (assuming he doesn't cancel again), and with the head of urology at Johns Hopkins on May 2.  Perhaps between the three of them, I can get some insight on how I can improve my quality of life.

The annual BCAN (Bladder Cancer Awareness Network) walk is Saturday, May 4.  We've set up a page for participants, and for donations.  Click here to go to the team K Bros web page.  If you are in the DC area, please join us for a walk around the tidal basin.  And please consider donating to this worthy cause.  Sponsors are guaranteed to get their money's worth in warm and fuzzy feelings, sort of like a wet diaper.  

Finally, click here for five things you didn't know about bladder cancer.  It's more fun than juggling chain saws!