Mets Day 712 - Good CT scan results

Today I went to NIH for another CT scan -- I think it's my 12th CT scan since December 2011. I stuck around to meet with Dr. Apolo, and received the results: no further spreading of my cancer was detected. The scan could not tell if the node in my neck was the same size as before, because the scan started about halfway through the node. The radiologist saw no evidence of cancer in my lungs or liver or anywhere else. He did note further deterioration of my spine, which probably is just age-related. Overall, it's as good as one could hope for.

Dr. Apolo advised that I continue to have regular scans every three months or so. She wants to do both a CT and PET scan next time. Those scans probably will be in mid-July. Meanwhile, she said that she saw no need for any chemo or other therapy at this time. I was not disappointed to hear that.

I have learned not to build up any expectations or fears for these CT scans, but to just accept the results to be whatever they are. As a result, I didn't feel a gushing of relief at these results. I did offer a silent prayer of gratitude and thanks, however.

What this tells me is that I won't be out of commission doing chemo in the near future. It means that I can make some travel plans this summer. I'd told Spencer that I'd be willing to join him for a drive out to Colorado or Utah in late May if he gets a job with one of the wilderness programs out there (his applications are pending). Jennifer and I also had made tentative plans with two other couples to travel to Seattle and do an Alaskan cruise in late June. We'll then spend a week or so in Utah in early July. The scan has given us some additional confidence that I'll be able to pull off those travel plans.

Mets Day 710 - Lessons From Adversity

Today I gave a talk during our church congregation's main weekly meeting.  Our church has an all lay clergy, so members typically rotate in giving talks.  Following are my prepared remarks:

From time to time, I have been asked how I have learned to live with the fact that I have a type of metastatic cancer that has a five year survival rate of about 5%.  The short answer is that living with cancer is better than the alternative. 
 

Today I want to talk about the longer answer, however.  It centers on how we choose to react to events that we do not control.  Each of us are agents unto ourselves and have constant opportunities to choose to “do many things of our own free will” (see D&C 58:27-28).  Lehi explained how we are free to choose liberty and eternal life, or to choose captivity and death (see 2 Nephi 2:27).   

Owning our choices is a fundamental aspect of God’s Plan of Salvation.  The Lord told Moses, “I [have given] unto man his agency” (Moses 7:32).  Our Heavenly father told Adam and Eve, “Thou mayest choose for thyself” (Moses 3:17).  King Benjamin taught “That ye may live and move and do according to your own will” (Mosiah 2:21; see Neal A Maxwell’s March 16, 2004 talk, “Free to Choose”).   

When I taught the Gospel Doctrine class, I occasionally would reference a book titled, Free Agency, and How To Enforce It.  Its author explains how we can make others choose what we believe to be correct decisions.  I think the author’s last name is Zebub, first name Bella.  I see some of you looking it up on your smartphones.  Make sure you put in the author’s first and last name.  

Speaking of Beelzubub, we are told in the Book of Moses that Satan “sought to destroy the agency of man” (Moses 4:3).  “For, behold, the devil . . . rebelled against me . . . ; and also a third part of the hosts of heaven turned he away from me because of their agency” (D&C 29:36; emphasis added).  Lucifer was very angry then, and he is very angry still—choosing to strive to make “all men [to] be miserable like unto himself” (2 Nephi 2:27).  Latter-day revelation tells us that “It must needs be that the devil should tempt the children of men, or they could not be agents unto themselves” (D&C 29:39; emphasis added).  “Wherefore, the Lord God gave unto man that he should act for himself. Wherefore, man could not act for himself save it should be that he was enticed by the one or the other” (2 Nephi 2:16; emphasis added).  That is why there is “an opposition in all things” (2 Nephi 2:11). 

Among the oppositions in my mortality is the fact that I have terminal cancer.  I do not control my cancer.  My doctors do not control it, either: there is no cure.  So how do I live with a diagnosis of death? How do I order my affairs? How do I reconcile myself to the disappointment that I probably won’t be collecting Social Security?

From one perspective, having metastatic cancer doesn’t really change things too much, because all of us have a terminal disease. It’s called mortal life. The Apostle Paul said (or maybe it was Mel Gibson in Braveheart) all men die (see 1 Corinthians 15:22). All life, like my cancer, ends in death. We sing a hymn with the line, “death unlocks the passageway into eternity” (Upon the Cross of Calvary, No. 184). 

During the course of my cancer, I have come to understand that mortal death is vastly overblown. Last September, I wrote the following:

Yesterday afternoon my 25 year old daughter, Chelsea, gave birth to her first child, and my first grandchild.  My granddaughter is has a big head (of course), a strong cry, and a piercing stare.  All is well with everyone involved. 

Chelsea and I had agreed that during the actual delivery, only the doctor, her husband, and Jennifer should be present.  I sat in the room but on the other side of a curtain, and listened, as the doctor was giving instructions, Jennifer was counting, Josh was reassuring his wife, and Chelsea was alternating between pushing and catching her breath.  I had a quiet conversation with God as this went on for about an hour.  I realized that, in many ways, the curtain was like a veil separating me from my family.  I could sense their presence, send my prayers and light and love to my daughter, and experience the event, but I was not physically present.

Death will be like this, I believe.  My soul, and all that I am, will continue on.  I will not be physically present, but still will be in their presence, will be able to send my prayers and light and love to my family, and experience their joy and sorrows.  As Sullivan Ballou wrote to his wife the week before he died in the First Battle of Bull Run, "I shall always be near you; in the gladdest days and in the darkest nights . . . always, always, and if there be a soft breeze upon your cheek, it shall be my breath, as the cool air fans your throbbing temple, it shall be my spirit passing by. [D]o not mourn me dead; think I am gone and wait for thee, for we shall meet again."

Holding my granddaughter, I felt great joy and rejoicing in my posterity.  The next generation of my family has started.  Life continues on.

Looking back, I now realize that I was prepared for cancer by parenthood. I don’t mean to compare metastatic cancer to parenthood.  One is a series of tragic events, a parade of disappointments that leads to ongoing frustration, anger, grief, and eventually acceptance.  The other is just a disease.  

Let me share with you the story of how I learned in parenthood to let go of something I don’t control, and to trust God.  It is a story filled with unexpected epiphanies, and how the moments of greatest parental pain taught me lessons that have formed the foundation of how I am living with cancer.  This story illustrates how unexpected lessons that come from adversity can later provide a deep wellspring of water for a parched soul.  And this story illustrates how the Lord’s ways are not my ways (see Isaiah 55:8). 

Some of you know snippets of this story, as it has played out in this ward over the past eight years.  I never have subscribed to the heresy that one must always appear to be perfect in church, because church is a hospital for sinners, and never a showcase for saints.  And we “all have sinned, and come short of the glory of God” (Romans 3:23).  A ward family is, in the words of Alma, “willing to bear one another’s burdens, that they may be light; and are willing to mourn with those that mourn; and comfort those that stand in need of comfort” (Mosiah 18:8-9).  Paul taught that to bear one another's burdens is to fulfill the law of Christ (see Galatians 6:2).  Today, I ask you to bear my burdens with me.

In 2005, my son Spencer was 14 years old, and was in eighth grade in middle school.  Unknown to Jennifer and me at the time, while over at friends' houses to play video games or to hang out, he started drinking alcohol and smoking pot.  His drug and alcohol abuse continued as he started his freshman year of high school.  His grades plummeted.  He became increasingly withdrawn from the rest of the family, and was verbally, emotionally, and at times physically abusive.  Between December 2005 and May 2006, our home was a place of ongoing warfare.

Spencer would tell you now that he was self-medicating because he was deeply unhappy.  He was angry at his lack of self-confidence and felt considerable pressure and stress from his parents and the church to measure up.  At the time, he did not have the tools to recognize and articulate the causes of his anger.  Jennifer and I sought the assistance of doctors, professional counselors, as well as church leaders.  Despite our collective efforts, Spencer continued to abuse alcohol and drugs.  We felt imprisoned in our own home, fearing the next explosion, wondering if our lives were in danger. 

After we felt that we had exhausted every other option, Jennifer and I made the decision to have our 15 year old son removed from our home and placed in a therapeutic wilderness treatment program.  We prayed repeatedly about this decision but received no definitive answer.  At 4 am on Wednesday, May 10, 2006, we woke up Spencer and explained that he was being placed into a program, then withdrew to a hail of savage words.  We had contracted with a team of professionals who escorted our son out of our house and delivered him to the program.

After Spencer left, Jennifer and I knelt in prayer.  For more than an hour we wept as we poured out our hearts to our Father in Heaven.  Only then did we receive confirmation that we had made the correct decision.  As Moroni taught, “ye receive no witness until after the trial of your faith” (Ether 12:6).

After three months, Spencer thought that he was ready to return home, and we wanted him back home.  Through the family therapy of the program, we had made good progress in understanding and discussing our son’s underlying issues.  Spencer wrote out a series of promises governing his behavior at home.  We enrolled him in a private school for his sophomore year, and developed scaffolding to support him in his good choices.

After several months, however, Spencer began backsliding on his commitments.  One of the first things to go was Spencer’s willingness to attend Seminary.  What is a parent to do if his teenager changes his mind and refuses to attend those 6 am classes?  We counseled with the bishop, and searched for the answer in that book about free agency.  Eventually we grudgingly relented.  We as parents were not yet willing to grant to Spencer his free agency.  After all, we as his parents knew better.  Why couldn’t he be reasonable and do it our way?

Do you see the conflict here?  Looking back, I now understand that, by denying Spencer his agency, we as parents took upon ourselves his choices.  Even though my intentions were good, every time we made Spencer get out of bed for Seminary, or dragged him to church, or made him join us for family prayer, or family home evening, or participate against his will in other church-related events, we were depriving him of his agency.  And we were using church teachings as a wedge to separate us from our son.  The greater sin was upon me.

Eventually we learned to disengage our home rules from traditional LDS checklists, and instead insisted on some fundamental points: Love. Trust. Decency. Respect.  We learned that we could not control Spencer’s choices, but we could enforce our home rules.  If Spencer chose to not abide by those home rules, then he was choosing to not live at home.

During Spencer’s sophomore year in high school, he continued to vary from his prior promises and our basic principles.  He once again was abusing alcohol and drugs.  Police came to our home several times.  By then end of the school year, Spencer was facing a choice to either enter the Fairfax County juvenile detention system, or enter a private treatment program.  He chose the latter, and on Saturday, June 16, 2007, the day after Spencer finished his sophomore year, he entered a treatment program that focused on teaching the 12 Steps, and the timeless truths of the Serenity Prayer:

God, grant me the Serenity
To accept the things I cannot change...
Courage to change the things I can,
And Wisdom to know the difference.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as the pathway to peace.
Taking, as He did, this sinful world as it is,
Not as I would have it.

Trusting that He will make all things right
if I surrender to His will.
That I may be reasonably happy in this life,
And supremely happy with Him forever in the next.

Between August 7-9, 2007, Jennifer and I spent three days with Spencer in family workshops at the conclusion of that program.  One of the sessions was called “clearing the slate.”  I was to sit knee to knee with Spencer, looking straight into his eyes, and tell him of all of the hurt, and pain, and sorrows, and regrets, that I had felt as a result of his use of drugs and alcohol.  He was to say nothing, but simply accept it.  For more than 45 minutes, I spoke of the pain he had caused to our family.  I spoke to the tears and sorrow.  I was raw with emotion as I unburdened myself to my son.  Spencer silently accepted my firehose of sorrow.

As my grief ebbed and the torrent of my words began to slow, I said something totally unplanned, and unexpected.  I looked my firstborn son in the eye, and said, “Spencer, I want you to know of my expectations of you in the future.  From this day forward, I expect nothing from you.”  I saw Spencer’s eyes narrow, as he tried to understand what sounded initially like an insult.  I paused, then added, “I am releasing you from all expectations that you felt that I had imposed upon you.  I want you to live your own life, free of any expectations that you feel I have imposed upon you.”

With those words, I was finished cleaning the slate.  I felt wrung out and exhausted.  As Spencer and I hugged, with tears in our eyes, I felt a mighty burden being lifted from my shoulders.  Until then, I had not understood the great weight that I had been carrying.  I had taken upon myself the consequences of my son’s actions.  I had saddled myself with a burden that never was mine to carry.  In releasing my son from the burden of my expectations, and giving him the dignity of his own free agency, I found that I had freed my own soul. 

I learned then that I cannot change my son, nor any other person.  That “mighty change” can only come from within (see Alma 5:14).  Each of us, including my son, is an agent to him or herself.  I knew these truths were part of the Gospel of Jesus Christ, but until I sat knee to knee with my son, I did not understand what it truly meant to accept the things I cannot change.

I have learned that honoring agency means letting our children suffer the consequences of their actions.  I find an analogy in teaching our children how to ride a bike.  If we never let go of the bike, then our child will never learn to balance, to ride on his or her own.  But if we let go, our child may crash, get hurt (or maybe even die!).  But eventually a parent has to let go, frequently before the parent is ready, and usually because the kid pedals faster than the parent can run.  And then we watch our child with a mixture of apprehension and joy.

So it is with mortal life.  The scriptures teach that every person with moral agency must be responsible for his or her own choice.  This principle was established even before the world was created, when “a third part of the hosts of heaven turned” away from their Father “because of their agency” (D&C 29:36).  In other words, one third of God’s children – well over 50 billion individuals - deliberately chose not to undergo the mortal experience by choosing not to go on choosing.  Through their choices, God’s children separated themselves from their family.  And their parents watched them go. 

Four years and three months after my son taught me the lesson of accepting things I cannot change – and nine months after Spencer committed to sobriety – I was diagnosed with bladder cancer.  From what was initially a hopeful diagnosis and optimistic treatment plan, the news gradually worsened and my prospects grew less promising.  On April 12, 2012, a CT scan found that my cancer had metastasized outside of my bladder; three weeks later doctors found 12 positive lymph nodes.  Last August another scan found the cancer had spread to my neck.  I’ve already passed the median point of survival for those with my type of cancer, so now I’m in bonus time.

I accept that I have no control over my cancer.  Because of the lesson my son taught me on August 8, 2007, cancer is not a burden to me.  I have learned to “let go, and let God.”  As the proverb says, “Trust in the Lord with all thine heart, and lean not unto thine own understanding” (Prov. 3:5). Through living with cancer, I have learned to place my trust in the Lord, and live each day with gratitude.

Two weeks ago, Jennifer and I attended an AA meeting, where Spencer spoke in celebration of the three year anniversary of his commitment to sobriety.  He will be the first one to tell you that he has felt a mighty change as a result of his choices and actions.  He is at peace with himself, and has learned how to quiet the persistent whisperings that led him to alcohol and drugs.

Might I give one example of Spencer’s growth as a result of his adversity?  When Spencer was about 18, and still using, I had a conversation with him.  He said that he was not happy, and asked me what made me happy.  I replied that I found the greatest joy when I was serving others.  He looked at me like I had two heads, and the conversation ended.  Three years later – after Spencer had been sober for about a year, and had started to act as a sponsor to others in AA – we were having another conversation.  He said, “Do you remember when you told me that you found happiness by serving others?  I’m beginning to understand that now.”

Looking back, I find it unlikely that I would have chosen my particular path through parenthood.  Who would have thought that my learning to let go of the consequences of my son’s choices would have prepared me for living with cancer?  Once, when I was relating this insight, Spencer smiled and said, Yeah, Dad, that’s why I started using in eighth grade, because I knew you were going to get cancer 6 years later and needed to learn some lessons first.”  Gee, thanks, kid.

At times, I have marveled that, the moment that a man and woman are sealed in the temple, they have obtained all of the saving ordinances necessary for salvation.  What is the point of the remaining years, I have wondered?  The scriptures repeatedly tell us that we must “endure to the end” (e.g., D&C 14:7).  I now understand that one of the post-celestial marriage lessons is to learn that our children must learn through opposition and adversity the consequences of their own choices.

In this month’s Ensign, Elder David Bednar addressed the heartache that parents can feel when their children walk on wayward paths. (See Faithful Parents and Wayward Children: Sustaining Hope While Overcoming Misunderstanding, March 2014 Ensign, at 28.)  Elder Bednar urged that parents continue to pray for their children, as did Alma for his son, to seek a heavenly pull that entices a wandering child eventually to return to the fold.  The Apostle emphasized, however, that no spiritual influence or covenant can override the moral agency of a child.  Ultimately, a child must exercise his or her own moral agency and choose to respond in faith, to repent with full purpose of heart, and act in accordance with the teachings of Christ.

I think that some in our society, and perhaps even in this ward, seek to protect our children too much.  In this area, it seems to be uncommon to encourage our teens to hold jobs while in high school or even college.  We provide for all of our children’s wants and needs instead of letting them learn the benefits of delayed gratification.  We immediately intervene with the school instead of letting our child fail a class.  We never let go of the bike.  What lessons are protective parents providing?  By usurping the agency of our children, are we both crippling our children, and ourselves?

The paradox is finding joy in life’s difficulties.  Dutch theologian Henri Nouwen wrote that,

"by greeting life’s difficulties with something other than denial, we may find something unexpected.  By inviting God into our difficulties, we ground life – even its hard moments – in joy and hope.  And we learn the way to a deeper love for others. 

How can we learn to live this way?  Many of us are tempted to think that if we suffer, the only important thing is to be relieved of our pain.  We want to flee it at all costs.  But when we learn to move through suffering, rather than avoid it, then we greet it differently.  We become willing to let it teach us.  We even begin to see how God can use it for some larger end.  Suffering becomes something other than a nuisance or curse to be evaded at all costs – it becomes a way into deeper fulfillment.  Ultimately, suffering means facing what wounds us in the presence of the One who can heal.”

See Turn My Mourning into Dancing – Finding Hope in Hard Times by Henri Nouwen (2004).

In the April 2012 General Conference, Pres. Eyring recalled the awe that he felt when, some 33 years earlier, he listened as President Spencer W. Kimball asked that God would give him mountains to climb.  President Kimball said: “There are great challenges ahead of us, giant opportunities to be met.  I welcome that exciting prospect and feel to say to the Lord, humbly, ‘Give me this mountain,’ give me these challenges.” (Mountains to Climb, May 2012 Ensign).

I am told that, when working out, one must continually increase the amount of weight lifted, or improve your time when running, or else your progress will slow. (I have no personal knowledge of these things.)

Brothers and sisters, are you seeking mountains to climb?  Or do you seek the easier way?  Parents, do you seek to put your children’s feet on mountain paths?  Or do you seek to smooth the way, so they will not have to work as hard?  And if so, why are you choosing to weaken your children?

To the youth – raise your heads – are you taking the easiest path through life?  Or will you choose to “stand as a witness of God at all times and in all things, and in all places that ye may be in, even until death”? (Mosiah 18:9).  

All of you: Are you grateful for your burdens?  Do you give thanks to God that your life is hard?

Over the past couple of days, Jennifer and I pruned many of the bushes in our front yard.  We cut, reshaped, and removed many of the branches.  It’s hard to believe that pruning will help those bushes have more vitality and grow better.  In John Chapter 15, Jesus told his followers that they were as intimately related to him as branches are to a vine.  But He added that they still needed to be pruned to bear more fruit.  So it us with each of us when we are pruned.

When we are being pruned – being cut, reshaped, having old growth removed – are we grateful? Nouwen wrote how gratitude must be cultivated:

For gratitude is not a simple emotion or an obvious attitude.  Living gratefully requires practice.  It takes sustained effort to reclaim my whole past as the concrete way God has led me to this moment.  For in so doing I must face not only today’s hurts, but the past’s experiences of rejection or abandonment or failure or fear.  (Nouwen, ibid.)

Do we willingly submit to God’s pruning work, are we hopeful for what can happen in us and through us? Or does it make us sad? 

Grateful people learn to celebrate even amid life’s hard and harrowing memories because they know that pruning is no mere punishment, but preparation.  When our gratitude for the past is only partial, our hope for the future can likewise never be full. (Nouwen, ibid.)

Cancer has not weakened me, it has strengthened me.  Even as it shortens my mortal life, I give thanks that the Lord has been merciful to me, and allowed me to learn the lessons that I have.

My prayer is that each of us can embrace our adversities; that we love the lessons that are given by opposition in all things; that we give thanks for our agency; and that we accept the things we cannot change, seek the courage to change the things we can, and find the wisdom to know the difference.

In the name of Jesus Christ, Amen.

 

Mets day 699 - Leaking again

My neobladder has started leaking again at night. It's not as bad as it was before I started taking imipramine in May 2012, but it's still no fun to be jolted awake in the middle of the night. I'm not sure what the issue is, or what's different.  I've also noticed that fully emptying the neobladder is more difficult at times. I looked at my paperwork from the hospital, and the warranty on the neobaldder already has expired, so that must be the problem.

Faithful readers will recall that a neobladder is made out of a 2 foot long chunk of colon. It doesn't have the same nerves that a regular bladder has to tell me how full it is. It also doesn't have the same squeezing muscles as does an OEM bladder.  I have gotten pretty good at gauging how full I am, and how to drain myself, but it seems like what I'd been doing isn't working as well now.  It's too early to tell what if anything I need to do differently; right now I'm paying very close attention to what works, and what doesn't work.

Meanwhile, I have another CT scan in a couple of weeks.  We've been waiting on the results of the scan before making any definitive plans for the summer. It's hard to plan ahead when you don't know if you'll be doing more chemotherapy, or having another treatment, or doing nothing.  I've learned to assume nothing, keep a very short horizon, and be grateful for each day.