Category Archives: Leukemia/Cancer

A New Beginning

Bryan entered glory and went to be present with Christ on August 26, 2016. (You may read his obituary here.) The ministry of GLOW will continue, and we thank you for your on-going interest and support.
He wrote the following letter to be read at his celebration of life service. As Bryan begins his life in glory, these are the words he wants you to hear from him. ~ Marcia

Thank you all for being a part of my life.  Thank you for making it a richer experience by the way you modeled compassion, integrity, respect, and loving concern.

I am grateful for you joining in me in bringing practical love and hope of Jesus to the poorest of poor by partnering in the global missions of Go Light Our World, and for your teamwork in advancing great causes at work, changing the world for people.  You are the light of the world.

Thank you for challenging me in areas of truth and discernment, for sometimes being my teachers and role models, and for your encouragement. Thank you for sharing your joys and making me laugh.

Thank you too for sharing your sorrows and tender tears and for talking about things that really matter.  I’m thankful for when you visited me when I was sick, for doing yard work I was unable to do, and for your prayers.  Thank you for being a good friend.

I hope you will remember the purpose and passion for life we shared, and the love and respect that bound us together.  I know my life was an imperfect testimony to God’s love, but I hope you will carry with you some memory that encourages you when you’re feeling sad, something that brings a smile to your face, something that reminds you to live your life with God’s purpose and passion.  Remember how very much Jesus loves you and wants to draw you close to him.  Be gentle with each other and love one another.

To my dear friends who haven’t yet made a decision about Jesus, I respect you deeply and encourage you to give Jesus a chance to reveal himself in your life.  Read the gospel of John. Ask a Christian friend to read it with you.  Ask God how you should respond to his invitation to accept his free gift of salvation and grace.

Actually, this is my hope for all of you.  Give Jesus a chance to really transform your life into something new and powerful.  Be real with God.

I thank God for each of you and ask his great mercy to comfort, strengthen and guide you to a great life.  Thank you for being part of my life.  I look forward to seeing you again in heaven.

My confidence in going to heaven is not by the great quests pursued in work, not in my character, or faithful endurance through suffering.  It is not by gifts to the church, not by philosophy or education, nor by any means.

My confidence is in the promise of God to rescue and redeem everyone who believes in the name of his Son Jesus.  It’s by his grace alone, not by works lest we should boast.  We are saved by his amazing grace, created for his workmanship and his glory.

In the meantime, I will be eternally grateful for any kindness, compassion and encouragement you show to my beloved wife, my magnificent children and grandchildren.

Live well my friends.  Don’t waste your life.  Be happy and laugh often. Enjoy the life that God desires for you.  Enjoy him.

Medical update from the hospice house

I have come to inpatient hospice at
Kavenaugh House for adjustment of my
pain medications.
900 56th Street
Room 14
Des Moines IA 50312
(515) 255-0857 (reach me by cell
641-521-5619… But be prepared. I am
generally too sleepy to talk,)

Don’t try to send mail, as I expect to
be out by Monday or earlier. They
started this afternoon with a 2mg shot
of dilaudid. I’m told this is the
equivalent if 60 mg (4 doses ) of
morphine. So far it helps only a little
with pain and makes me very sleepy. I now have A subcutaneous pump
strapped to my arm that gIves me
a somewhat constant flow of the medication. If
things go badly I’ll be sent home to
die, per request. Otherwise, discharge
with pump probably by Monday.

I don’t understand why the pain persists. But I am reminded that Jesus carried pain too. He is not untouched by or ignorant of what I – or you – are experiencing. As he entered the garden he said these words: “My soul is overwhelmed with sorrow to the point of death.”

My friend John reminds me also, “Just as David poured out as an offering before the Lord the water his soldiers risked their lives to get for him, so offer up your pain as a
sacrifice of praise to him. May his great name be praised in all we walk
through in life.”

Thank you for ongoing prayers in this
difficult part of my journey to heaven.
May God be honored.

Love,
Bryan

Freedom within

Independence Day.

A day of celebrating liberation from oppressive forces, and of remembering with bowed hearts the unthinkable sacrifices made to secure that very freedom we enjoy today.

But can you imagine a scene where the liberating troops came marching home to find those for whom they fought remaining in bondage? In fact, insisting on living war-torn lives even after their freedom has been won?!

After all the wars that have been fought, so many do continue to live such defeated lives. On the surface they might appear normal, even productive. But if you were able to look a little deeper into the dark crevices of their minds or could hear the silent cries of their hearts, you would at once come to know the terror of their imprisoned lives. Maybe this is a picture of your life right now, free but still at war within yourself.

Who are their invisible oppressors? What are the names of these terrorists who war against us? They are called by many names: worry, anxiety, irrational fear, underserved guilt. Their cousins are apathy, greed, bitterness, and selfishness. How many other of their names come to your mind?

Our eternal victor has flung open the prison doors, having won for us peace, joy, calm assurance, real purpose for living meaningful lives, and satisfaction beyond what we could imagine.  But here we remain imprisoned alone in our self-locked cells, insisting the war rages on within us. It is as Pascal said: “All men’s miseries derive from not being able to sit in a quiet room alone.” Jesus has won the war over our sin. He’s overcome the grave. He’s given us his own Spirit to teach, comfort, convict, and empower us, and to remain within us always. And yet we sit in a cell as if we were all alone.

He has given us what Victor Frankl called that miraculous and wondrous “freedom within.” It is the freedom to allow a space between what we see with our eyes and what we know in our heart. It’s the freedom that allows a space between what happens to us and how we respond.

“Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

No longer does a hurtful word spoken in haste have the power to demand my own hurtful response. No longer do past hurts dictate my future joys. No longer does worry and constant anxiety command authority over the self-chosen peace afforded to me by the assurance that God really does hear my heartfelt prayers. He does in fact see us where we are. He has truly written our names on the palms of his hand. He catches ALL our tears in a bottle and so pain, while it demands our attention, is not wasted.

True, it sometimes appears as if I’m losing the battle, but even the pain that wars within my body this very moment cannot silence the truth and grace that our good and loving God speaks to my spirit and soul. My desire for a comfortable life of having everything my way is strong, but it cannot compete with the desire to see others experience this same freedom within – to choose to be thankful and find hope even when circumstances offer only sorrow and despair.

Today can be your Independence Day. Believe the victor Jesus for all he has accomplished, not only the forgiveness of sin and eternal salvation, but also for your present and future joy.

“For freedom Christ has set us free; stand firm therefore, and do not submit again to a yoke of slavery.” Galatians 5:1

 

Sepsis of the heart

Boxing legend Muhammad Ali recently died of septic shock, a blood infection that sweeps through the body with relentless destruction. Made increasingly more vulnerable to the infection by his Parkinson’s disease, the great fighter was left with no immune resources for winning the final fight of his life.

I know something about this. My own AML (Leukemia) weakened my own immune system to the point I contracted sepsis in the hospital last fall. As the infection spread quickly through my body, my breathing was compromised, my pulse skyrocketed and my blood pressure dropped to life threatening levels. A couple of days in ICU with strong antibiotics and a massive intravenous fluid replacement schedule righted the situation and slowly I started the road to something that  started to look like recovery.

With sepsis, what begins as a seeming less innocuous bug bite, sinus infection, or blood infection, quickly progresses through out the body like an F5 hurricane that leads to pneumonia, organ failure, and eventually the entire collapse of the body’s ability to sustain itself. More than a quarter million people die of sepsis every year in the USA (the most common cause of deaths in hospitals) and thousands more are left with debilitating effects of the condition. Even the greatest fighter of all time cannot withstand the crushing blows of this opponent.

It’s frightening to say the least, particularly amongst those with compromised immune systems.

It seems to me there is also a type of “spiritual sepsis” that threatens dire circumstances for even those whose physical health is “ship-shape.” What are the symptoms of spiritual sepsis? It starts as a minor condition. It begins with a sort of spiritual malaise, nothing serious, just a general dissatisfaction and lack of inclination to pray or even think about God. Often, it’s treated with an inoculation of busy activities. Keeping busy seems to take one’s mind off the woes of the heart. When that doesn’t work one might turn to other substances for relief – food, or the lack of eating, drinking or pain killers that numb us to the pain inside.

But unless sepsis is treated both immediately and intensely it quickly grows to consume one’s entire life. Before long, nothing spiritually related seems appealing, not church, not bible reading, not prayer, and certainly not accountable relationships with other believers. Isolation only further complicates the problem. Loneliness quickly leads to despair and hope slips away like the shadows of a setting sun.

Left unattended, the condition leads us to actually become enemies of the cross. “Their destiny is destruction, their god is their stomach, and their glory is in their shame. Their mind is set on earthly things.”  (Philippine 3:19) “Therefore God gave them over in the sinful desires of their hearts…” (Romans 1:24) Like physical sepsis, spiritual sepsis starts to tame on the robe of hopelessness and despair, buttoned up with the emotional pain of a meaningless and unsatisfied life.

But there IS hope. There is one who can revive us from sepsis shock of the spirit. It’s not found in a pill or intravenous solutions, not in busy activities or accomplishments, and certainly not in running away from God, hiding our head under the sofa cushions like a two-year old who thinks their parent cannot see them. Your hope for revival, and mine, comes only from the continual infusion of the hope and joy of Jesus flowing through our veins and every single aspect of our lives.

Are you feeling more and more sleepy? Do things of God seem to drain you of your daily energy?

“Wake up sleeper, rise from the dead and Christ will shine on you.”  (Ephesians 5:14)

Even if it seems your life is slipping away from a septic infection, with Jesus you can say,” I have fought the good fight, I have finished the race, I have kept the faith. From now on the crown of righteousness is laid up for me, which the Lord, the righteous judge, will award to me on that day—and not only to me, but to all who crave His appearing.…” (2 Timothy 4:7-8)

 

A Time to Rest – Bryan’s medical update

The doctor appointment on Tuesday went quite sideways to expectation. It’s a bit like a “perfect storm” where we came to the top of the wave thinking we might just make it over the crest, only to have our hopes dashed by yet another crushing wave. Such has been this long journey through cancer.

The bottom line is, because fusarium never actually goes away completely, it rules out the possibility of a second transplant, my only small medical hope for a potential cure. In light of my recent test results the prospects of using hypomethylating agents (“soft chemo”) to hold the leukemia at bay makes the doctor “terrified” for the potential “disastrous” effects it could have on my health. In my complex situation, with two terminal illnesses, there is only a slim chance the treatment would give us a little more time and a very large probability that they could actually shorten life because it would present an environment that is more susceptible to infections, including the existing fusarium which continues to persist after nearly 7 months. Each treatment yields ever diminishing prospects and ever-increasing risks. In light of this, the doctor suggests that we might consider enjoying the time that remains, without treatment. Having discussed this and prayed overnight and into today, we are at peace with this.

imageWe’re not giving up. We’re leaving it up to God.

We have persistently and repeatedly pushed against doors that would not budge. We’ve both endured the devastating effects that 3 1/2 years of “treatment” have wreaked on my body. Together we both have fought the good fight and run the hard race. Now, it seems to us, a time to rest and let God do what is best in the grand scheme of things. It’s been in his hands from the beginning and we’ve endeavored to honor him each step of the way, asking only for his perfect will to be done.

We have no real definitive timeline. It could be “weeks or months”. Or, God could still work a miracle. Thanks to those of you who have been praying and fasting to this effect.

Our intent is, as it has been all along, to celebrate the life God has given us, thankful for so very many blessings, and to live with the great purpose to which he has called us. Death is not defeat. For us, death is a graduation from this phase of life to the one in heaven that lasts forever in peace.

We intend to continue to live life fully with purpose and passion. We encourage you to do the same. Trust God. Ask for his very Spirit to teach, guide, comfort, and strengthen you, to follow Jesus daily. After all is accomplished and all is experienced, all that remains and all that counts, is faith, expressing itself through love. (Galatians 5:6)

Know how very much we appreciate your ongoing prayers and support. They are a treasure to us.
Love,
Bryan and Marcia

 

I love who I really am

Though some deny it, it really is easy to say those three little words that have such profound impact when spoken from your heart:

I love you.

(Or those OTHER three small words one spouse longs to hear from the other, “I was wrong.”)

We talk about loving our spouse and our children in the same context of loving pizza or chocolate or sports. Confusing, isn’t it? But hidden under this fabric of many loves there lies an unspoken, somewhat sinister love. . . the love that hinges on “if” or “as long as.”

I love my job – if it pays well (or provides recognition or…promotion).
I love my spouse – as long as they fulfill my needs.
I love my children – as long as they obey.
I love my friends – as long as they agree with me.
I love my life – as long as I have my health, financial security, family (the list goes on).
I love God – as long as he blesses my life.

When we hinge our happiness and sense of purpose and love on an “if” or “as long as,” we’re admitting to a love for something that is greater than what we profess.

You all know from my 3+ year battle, the road ahead for any patient with acute Leukemia is an extremely difficult one: physically, emotionally, psychologically, relationally, and spiritually. More things are given up than desired and yet some new wonderful things can be picked up in the process. There is always eternal hope for those who love the Lord. The encouragement, prayers, and love of family and friends makes all the difference.

Cancer has a way of stripping away the temporal things that we let become our identity. As I’ve said before, we don’t get to choose what suffering comes knocking at our door but we do get to choose how we answer it. Be it driving, a certain form of communicating, eating and enjoying certain foods, or dealing with pain and sorrow, we get to choose what/who defines who we are. And in the end, our response determines how much we love and trust God above all else.

Cancer is not who I am. It defines my circumstances but it doesn’t define me. It doesn’t define who God is or who I am in his sight. The same can be true for you. Whatever identity you’ve lost through an unexpected and painful turn in the road also provides the opportunity to discover your true identity – what never changes regardless of the difficulty you face. We can choose to see each problem as an opportunity to trust God and to seek his blessing found only on the road of sorrow, never on the fast lane in the highway of a busy and productive life. In losing the world and even the life we know, we gain Jesus.

Things or circumstances don’t have to define who you are. Not bad things. Not even good things. As we discipline ourselves to keep focused, our eyes on the goal, we stay on track, our course unshaken by the life tremors which threaten to knock us down.

It is only in discovering our true identity that we find real peace in life. It’s there we experience peace in the storm, joy in the sorrow, comfort amidst pain, a friend when you are lonely, hope in despair, light in the darkness, and grace – amazing grace – when you realize his grace and power is all you have and all you really need.

Despite the let downs and disappointments and feelings that I could be so much better, more effective and productive, I love who I really am – a redeemed and treasured child of God, heir to his kingdom, and seen without blemish because Jesus alone has covered all my blemishes with his grace.

“I love who I really am. My true and full identify is in my personal relationship with Jesus.”

Is that your pronouncement of faith and joy in light of even your darkest moments?

Do you love me? Is it really true?

Tevye, the colorful character from Fiddler on the Roof, leans over quietly and asks his wife, “Do you love me?” She screams in reply, “Do I WHAT?!” “Do you love me?” he asks again with genuine concern. She goes into an indignant tirade of how she bore his children, cooked his meals, washed his clothes, and so many other chores she’s done in 25 years. Acknowledging her many expressions of love, he gently repeated, “But do you love me?” Quietly she admitted, “I guess I do love you.” Teasingly, he replied, “Then I guess I love you too.” Together they sigh saying, “After 25 years. it’s nice to know.”

How do you know love is true? Is it by the repetition of those three little words, “I love you?” (Or perhaps those other three: “I was wrong!”) Or is it in the consistent demonstration of loving acts? We could say “both” and be closest to the truth. But neither words alone nor actions by themselves are the true test of live, are they? We can, and sometimes do, speak idle words and perform repeated acts of service more in response to duty than true love.

But somehow, our hearts are able to confirm what eyes have seen and lips have spoken. Here comes a time when the heart knows for sure what the mind has only acknowledged to be true.

“In sickness and in health” has a way of testing true love. Marcia and I have experienced this to be true through this long and unexpected journey brought cancer. In face of adversity, true love finds both gentleness and strength. It learns the value in f commitment and persevering and also humble surrender. Whatever we knew as star struck lovers 44 years ago has been positively confirmed to be true in a much deeper sense than we ever could have imagined.

The same is true about God’s Word which is his love letter to you and me. At some point we come to acknowledge that God IS God and his Word is inherently true. we know it in our minds, confirm it with our lips, and believe it in our heart. And yet there is a deeper sense of knowing God’s true love that comes only by experiencing it through difficult trials. I’ve commented before that I would t have chosen this journey through cancer, BUT I’ve discovered along its path blessings I would never have discovered on a more comfortable road. Whereas once I “knew” God’s live and Word to be true in my mind and heart, now I know it to be true through the experience of his grace, his power to persevere, the comfort of his promise and the real hope in his faithful promises. That he loves me – and you – is undeniably evidenced both in times of rejoicing and times of sorrow and pain. Even if I had none of this, the price his Son Jesus paid for the forgiveness of my sins was evidence enough of his great love. Our God is a good God. His banner over me is mercy and love.

But is the “flip side” also true? How should we reply when Jesus asks us what he asked his disciple Peter, “Do you love me?” Is it sufficient to go about dutiful good deeds like Tevye’s wife Golde? Or is it sufficient to say the words in prayer and song? Deep down we know true love is expressed not only by simple words or sacrificial deeds. It’s known by all that flows from a humble heart that gives a sacrifice of praise and a life yielded completely to him, no holds barred, no distractions.

He’s asking, “Do you really love me? Is it really true?” How will you respond today?

Bryan medical update 5/11/16

Consultation went well at the U of I Wednesday. I had a blood infusion which should give me a bit more energy for awhile. The doctor agreed the best option is to proceed with hypomethylating agents (“soft” chemo) which I should be able to do outpatient at Skiff in Newton, maybe starting as early as next week. From what we understand, it will be a series of 5-7 infusions (or injections, depending on drug that is approved) over the course of a week. Wait 4-6 weeks and then reassess. Repeat if progress indicates. We’re told side effects may be minimal and that a return to Mayo Clinic is not expected. My Mercy oncologist will supervise the treatment and the U of I cancer center will continue to be my care coordinator.

This likely will not kill the cancer but hopefully will keep it at bay and give us additional time for the fusarium infection to be completely (?) knocked down. IF repeated courses of the hypomethylating agents are successful, it *might* open the door to a future induction chemo and transplant, IF my body is able to tolerate additional heavy chemo. We are cautioned that the risks continue to be high. But we are comfortable with this treatment approach and trust God will continue to direct our paths in the coming weeks/months.

Thank you for your prayers and support! We’ll keep you posted of any changes in plans. We are reminded daily how fragile this life is. As with any goal, it’s best we begin with the end in mind, pursue God, and enjoy the blessing of his promises and grace. This is what has sustained us through this unexpected journey. We hope he is the one who also sustains you through your every trial.

Blessings
Bryan

The last toenail

Strange title, I know. But this week I am celebrating the last toenail to fall off. This is the third time since cancer that I’ve lost all twenty fingernails and toenails. Each time it takes about six months to shed them all and additional months to grow them back. It’s not a big deal compared to the other atrocities of cancer, but being without nails is a frustration, especially when they catch on something and rip off suddenly and painfully.

Actually, it’s not the last nail falling away that I celebrate. It’s the new beginning. New growth brings hope. All pain, even if it is for a lifetime, is temporary for the one who accepts Jesus’ teachings and believes his promises. Whatever is “falling away” in your life is not your whole life. What is gone cannot strip away what remains without our choosing. And whatever is lost cannot compare to what remains: the contentment of rising above circumstances, the peace in spending time with your living God, the hope and joy of his faithful promises that his grace IS sufficient for our needs and he will NEVER abandon his child.

Yes, your suffering and disappointment and pain is real. But it is not forever. And it doesn’t have to define who you are.

“Turn your eyes upon Jesus.

Look full in his wonderful face,

And the things of earth will grow strangely dim

In the light of his glory and grace. ”

Be thankful for the new beginning that rises before you.

 

Turning tears into prayers

From tears to prayers

From tears to prayers

Daniela, our longtime yet still young friend from Bolivia, shared this image with us. It takes the Spanish word for crying, LLORA, and converts it to ORA, meaning to pray. It says,

“When you are sad, turn your tears to prayer!

The message is taken from the time when Jesus said,  “My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me.” Going a little farther, he fell with his face to the ground and prayed,“My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” (Matthew 26:38-39)

We’ve all experienced pain and suffering to some degree. Whether light or intense, and whether it is our own pain or the pain we feel for someone else, it always feels like a heavy burden. Have you ever been “overwhelmed with sorrow to the point of death?” Certainly, Jesus knows the depth of your pain and mine. We are not alone in our sorrow, not without hope. Though tears overcome us and we feel completely overwhelmed, we are not left to despair – if we turn our tears into prayer.

We see David, who God called “a man after my own heart,” doing this. David was relentlessly and persistently pursued by his enemies. They pressed down upon him from all directions, threatening to take his life. As we shared Psalm 63 with a dying friend, he agreed his life felt like that; the armies of cancerous cells were encamped all around, not only threatening but promising to take his life. Like David, we cry out, “How long O Lord? How long will you wait to vanquish my foes? How long until you redeem my sorrow? How long until you bring me home? And yet I will trust you. And yet I will still praise you, for you are the Lord my God, my refuge and my salvation.”

Tears flow and we think they fall needlessly and meaninglessly to the floor. But that’s not so. Our loving God who sees us where we are, catches each one of our tears.

“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalm 56:8

God doesn’t waste pain. It becomes a megaphone that demands our attention and he uses it to draw us closer to him. He takes note of not only some, but all your tears. He records them in his book. He pays attention not only to our troubles but to how we respond to them. He sees our faith in action, turning tears into prayers – and prayers into thanksgiving.

There is “A time to weep and a time to laugh; A time to mourn and a time to dance.” (Ecclesiastes 3:4) Turning our tears into prayers invites laughter and dance and brings hope to the sorrow. May such contented joy be yours.