Tag Archives: cancer

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?

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

Day 71 update

 

The original skin lesions are healing nicely.

The painful nodules under the skin are NOT Sweet’s Syndrome. Docs think they are they remainder of the fusarium infection. The only treatment for these would compromise my immune system allowing the remaining cancer and the fusarium infection to expand. So we are waiting to see if the Voraconazole medicine will eventually dissolve these and relieve the pain.

 

The things affecting discharge next week are the funding for this expensive drug and my mobility. Walking is still painful and tiring but important to get the blood flowing and building strength.

 

Thankful for your prayers,

Bryan and Marcia Thayer

 

Day 63 Update – Thanksgiving

 

I hope you had a wonderful Thanksgiving holiday with friend and relatives. We have so VERY much for which to give thanks. Even on Day 63 at Mercy hospital, dealing more with the painful blood infection than the cancer, we celebrate:

  • My blood counts are rising or holding their own, which is necessary to fight this tenacious infection and become free of need for blood infusions.
  • No fevers!
  • About 12 of the worst skin lesions are starting to heal. (I don’t look so much like a wrapped mummy these days.)
  • I can stand on my own now and am slowly gaining strength walking short distances slowly with a walker and an aide.
  • I am off the antibiotics for the Rothia infection. They consider me cured of that unless I start developing fevers.
  • Partial Approval has been given for the prescription I need for my mold that costs $5000/month. They have approved $4,000. The case manager is seeking help for the other $1000. They will only approve one month and then I have to reapply since I need treatment for at least six more months.
  • Planning for discharge to home mid-late next week. (Have to resolve medicine assistance first.)

 

I’m also thankful for God using technology to extend his blessing. Marcos is a teen ambassador in our Bolivian Josias program. He lives in a poor family, goes to school, and works at a bookstore to help support his sisters and mom. Marcos managed to find me, 6,000 miles away, on Facebook Messenger. I asked how he was today. He replied not well. He had to stay home from school because he was sick. Knowing that many of these families suffer digestive problems due to lack of access to clean water and safe food, I asked if it was his stomach. When he confirmed this, I asked if he had any medicine. His sad reply was, “no money.” So I messaged Delia who coordinates the program and she was able to buy some medicine for this dedicated youth leader. This all happened in less than an hour. Thanks, God for using technology to demonstrate your blessings!

 

Prayer concerns:
Poor appetite
Continued pain…need the subcutaneous nodules to heal as they are putting pressure on tendons and nerves. The doctors say it will take weeks or months. A matter of waiting on the Lord.
Medicine approval
Strength to carry out normal routines to God’s honor.

 

Despite the concerns, my list of thanks goes on and on. Sometimes I fall asleep at night naming them one by one. (Other times, it keeps me up for hours.) I wonder, if you were to make a list of everything you’re thankful for, how long do you think it would take to complete it? Would you ever be able to complete it or would each day bring more blessings? Ask God to remind you of your many blessings and the many times he has intervened in your life.

 

“I will give thanks to you Lord with all of my heart.
I will tell of your wonderful deeds.” – Psalm 9:1-2

 

The battle within

 

Someone wisely advised: “Be kind. Everyone is facing a tough battle.”

 

My doctor explained “what a colossal war is going on inside” my body: the battle of the body against the cancer and now the effects of chemo against the cancer AND against my body. He says the body is expending an enormous amount of energy at a cellular level, beyond what the anemia accounts for, in what is for the moment, a losing battle for the body. It will not have victory until it first falls. But THEN the victory will come!

 

It reminds me of the other battles we all face daily, sometimes unaware of the nature of our fight.

 

I suppose none of us seeks out the suffering that comes to our door. And when it does come, we are so eager to wish it away. But whether troubles are caused by a medical cancer or the “cancer” of broken relationships, physical pain, intense grief, or destructive attitudes, there are valuable life lessons to be found in suffering – if we listen.

 

God’s Word describes suffering as a refiner’s fire that has to get hot enough for the impurities to flow to the top, leaving only the highest quality purity remaining in your life. Suffering does that by stripping away false pretense in our lives so we can focus on what matters. CS Lewis says our pain demands attention. It draws us away from a wasted idle life of ease and comfort. We know God shows us compassion in our suffering so we can share with others in the lives of others in our path.  Sometimes suffering puts us in situations that actually advance the gospel.

 

But one of the supreme benefits of suffering – if we embrace it – is to draw us closer to God and develop qualities we could never learn or apply without such a hard teacher. Charles Spurgeon compares this to the soldier in the battlefield:

 

“God knows that soldiers can only be made in times of battle and are not developed in times of peace. We may be able to grow the raw materials of which soldiers are made, but turning them into true warriors requires the education brought about by the smell of gun powder and by fighting in the midst of flying bullets and exploding bombs, not by living in pleasant and peaceful times. So dear Christian, could this account for your situation? Is the Lord uncovering your gifts and causing them to grow? Is he developing in you the qualities of a soldier by shoving you into the heat of the battle? Should you not then use every gift and weapon he has given you to be a conqueror? Do you understand that God may take away your comforts and privileges in order to make you a stronger Christian? Do you see why The Lord always trains his soldiers, not by allowing them to lie on beds of ease but by calling them to difficult marches and service?”

 

My sister shared this quote. You know the truth, but I really appreciate the simple statement:

Trials don’t make us or break us.
They simply reveal what’s in our heart.

 

“Create in me a clean heart, O Lord, and renew a right spirit in me!”
Psalm 51:10

 

Whatever battle you are facing, know that you are not alone. Our good God desires you to prosper from it, not succumb to its pressure. Good and faithful friend, ask God to reveal what’s in your heart as you face your battle so you can use this time to draw closer to him and find his rest, his peace, and his strength to be “more than a conqueror” even in the middle of your storm.

 

Recovering from grief

 

The cancers of our life eat away at everything we’ve ‘gained’ and leave us with a profound sense of loss. By ‘cancer’ I mean not only that wretched medical condition that ravishes the body but also the other life tragedies that act as a cancer to our soul: Alzheimer’s disease, chronic pain, depression, the deep lostness that separates us from a loved one who has died or one who has severed a loving relationship while they still live. We grieve over our losses: lost dreams, lost opportunities, and loss of those we’ve befriended over the years. We might even experience ‘survivor’s guilt’, questioning why we survived and others didn’t.

 

Be it immense or small, it’s all grief to us and we have to find helpful ways to express it. Healthy recovery always involves coming to acceptance with what was, what now is and also a future that still can be fulfilling. It also always seems to involve building and strengthening mutually supportive relationships. It’s part of how God designed us. For sure, many will offer countless bits of counsel that seem to bring little solace at the time. We’re told to snap out of it, move on, and look on the bright side. True, some ways of handling grief are unhealthy and need prompting. Some try to deny their grief, thinking it is unfitting of them, conjecturing that Christian soldiers should be stronger in battle. The truth is grief is real and a necessary part of our recovery and healthy grieving brings us to a stronger place.

 

“I have never heard anyone say, “The really deep lessons of my life have come through times of ease and comfort.” But I have heard strong saints say, “Every significant advance I have ever made in grasping the depths of God’s love and growing deep with him, has come through suffering.”  – John Piper

 

Positive growth is a natural outcome of suffering and healthy grieving. It’s not just ‘moving on’ as if to escape from the past. It’s finding purpose and meaning in moving to a healthier future. You might come to interpret your grief journey as an unexpected blessing. Then again, maybe you won’t. Your interpretation of the journey is a personal one. You might find that keeping a daily journal of your thoughts, experiences, and revealed truths will help you sort things out. Sharing with trusted and mature friends can also guide you on the difficult path. I consider that any journey that brings me closer to God and closer to others is a worthwhile journey.

 

One aspect of grief recovery may seem strange but I’ve both seen and experienced its benefit: pouring yourself into others. Investing in others is biblically sound. Beyond distracting us from remaining too long in an unhealthy place, investing in others offers growth opportunities. God designed us to be strengthened when we strengthen others. Sharing your recovery experiences may help someone else who is going through a similar challenge. You can encourage others in ways you were encouraged or even in ways you wish you had been encouraged. Visit someone who is suffering or alone. Write letters of encouragement. Finding even small ways to bring light into their darkness will cast light into your own.

 

Do what you can and what is mutually beneficial but don’t try to do it all. The recovery process is one of balance. Acknowledge your grief in this difficult path but be also intentional about discovering daily reasons to give thanks and celebrate the continuing journey.

 

Recovering a sense of meaning

 

We’re reflecting on the thoughts of authors Magee and Scalzo who wrote, Picking up the Pieces – Moving Forward After Surviving Cancer. Their premise is that there are four ‘corner pieces’ in transitioning from surviving to thriving and that understanding these helps us to put the rest of the pieces back together.

 

Nicole is a stem cell transplant survivor. Initially she didn’t respond well to chemotherapy; at one point she only weighed 72 pounds. Determined to love stronger and care more, she set her eyes on staying focused and regaining her energy. She says, “I gradually got back to living life! I was doing the things I did before, but with a greater purpose. Staying focused on the future and continuing to plan for tomorrow helped. Getting this far was not easy.” She describes financial struggles that compounded her physical and emotional suffering. “I had to stay focused, take small steps, and not let the struggles get in the way of my progress. Making it through a tough time inspires me to live each day in the moment. I am passionate about volunteering. Being an example of hope for others is what I love about survivorship.”

 

Have you been in that place? Maybe it wasn’t fatigue or cancer, but maybe you’ve come to that same sense of wanting – and needing – lasting meaning in life. Maybe you’ve felt a sense of disconnectedness from others or even from life itself. Maybe you’ve realized that we’re meant to be part of a ‘community’ but you feel like your piece of the puzzle is insignificant. Don’t believe it. God doesn’t make insignificant pieces. Each piece of the puzzle has purpose; none is without meaning.

 

As you reflect on your life, consider what insight you’ve gained from your journey. Try to see your life not only on how it impacts you right now, but how it impacts others. Looking at your life from the perspective of the whole journey, even up until your last breath, will help you find the purpose and meaning you seek. This is especially true if you consider your life as it relates to the grand plan of God.

 

Let your mind leave behind what was lost and even all that surrounds you. Ask yourself what you’ve gained from your life experiences. What parts are making you stronger? Out of the confusion and disappointment of trials God can bring a sense of clarity and vision that was clouded before. Ask Him to reveal greater meaning in your life as you read His Word.

 

Recovering your sense of meaning, or discovering it for the first time, is a vital part of thriving and living the ‘abundant’ life that God designed for you.

 

 

Recovering a sense of control

 

Control. We all want it. It drives our life. We want to control our lives and our future. We want to control our circumstances. If we’re honest, we probably want to control others. God’s word says we should have self-control. It’s one of the fruit we exhibit when we walk in God’s light under the power of His Spirit. Maybe you felt you were making progress in this area, but when a life changing event comes upon you, you find yourself striving to recover a sense of control over your life. Authors Magee and Scalzo consider recovering a sense of control as the second phase in the transition from surviving to thriving*.

 

Esther suffered with aplastic anemia (AA) and required a stem cell transplant that was in one sense a cure, but also caused major upheavals in her life and her family’s. In addition to the physical challenges, they struggled with medical bills and emotions. Like many who face cancer, Esther became proactive in researching the condition and treatments, focusing on and gaining understanding of the daily medical test results. My experience is that this strive to gain some sense of control can both help and hinder the recovery process.  There is the pervasive thought that if you just understand more you will be able to control the situation. Often our circumstances will just not be controlled. But how we deal with them can be.

 

Esther made it her goal to get well. The journey was a rough one filled with disappointments: lost hair, painful mouth and skins sores, GVHD of the digestive system, financial challenges, and emotional roller coasters. But through it she says, “We may have sad days, scary days, disappointing days or feeling unwell days, but never a BAD day.” What? Never a bad day with all that suffering? How is that possible? She answers, “I couldn’t always control my physical condition, but I could control my attitude. Focusing on my priorities put things in perspective and kept me motivated. As I rebuild my life, I realize that my experience changed me. I am more grateful, nicer, more compassionate, and less judgmental. I have less patience for nonsense, complaining and ingratitude. I’m more confident now. I live more fully and authentically, recognizing that life can end at any time. What we make of it is up to us. Some things are worse, but most are different and better. The key was letting go of what I had before so I was open to loving my new life. I had to mourn the loss of the past so I could embrace today. It’s not about pretending but about letting myself be sad for a period of time and then getting over it and moving on.”  She adds that there are some things she can’t do anymore, but for every limit she creates a new alternative to finding joy. “Today, life is good. Not always easy, but good…not only surviving but thriving.”

 

We can’t always control our circumstances. But can take control over negative habits and thoughts that limit our life. We must “demolish arguments and every pretension that sets itself up against the knowledge of God, and … take captive every thought to make it obedient to Christ.” 2 Corinthians 10:5

 

Ask yourself how you can actively participate in the recovery from whatever limits you. Make assessment of the real risks you face. Define the kind of life you want to live and what does living well look like – even if your circumstances don’t change. Choose to recover the one thing you can control – the way you think and respond to life. Let God help you.

 

* Picking up the Pieces – Moving Forward After Surviving Cancer

 

Recovering a sense of self

 

It’s not all about you – or me. In one sense becoming a follower of Christ means losing our sense of self. “Out of our selves, into Christ, we must go. His will is to become ours and we are to think His thoughts, to ‘have the mind of Christ’ as the Bible says.” C.S. Lewis

 

And yet our sense of self, even God’s Spirit in ourself, is how we interpret the world and how we relate to God. Your sense of self, either as feeling separated from God or of belonging to Him, probably vacillates throughout your day – and life.  At one moment you see yourself as standing on your own two feet, pulling yourself up by your bootstraps and the master of your own destiny. And then something happens to make you realize you are ultimately a child of God dependent on resting in His loving arms. Sudden loss cuts to the core of who we are and may cause us to question ‘who remains’ after surviving a tragic life event. Authors Sherri Magee and Kathy Scalzo describe recovering a sense of self as the first of four phases of transitioning from survival to living well.*

 

Stem cell transplant recipient Kristina says, “Cancer wasn’t supposed to happen to me.” She describes her vibrant life before cancer, living on the edge, “fiercely independent and passionate.” It was who she was ‘B.C.’ – Before Cancer. Determined not to let cancer keep her down, Kristina resolved to focus on recovering the quality of life she desired. Devastating setbacks with GVHD and long periods of fatigue led to isolation, inactivity, and feelings of self-pity.  But she continued her pursuit of recovering her sense of self. “As post-transplant survivors, we have to drag ourselves out of it,” she says. “The initial step of recovery is just to get moving. Whether you do this alone, with a caregiver, or through a program, little steps make a big impact.”

 

She describes her “new normal” as including her mindset, physical changes, how people react to her, and her emotional well being. “While I experienced many changes and realized new things about myself, I was able to get back the part of my life that I loved.” She discovered the path from surviving to thriving.

 

As for me, I’m still in process.  It often feels like I am balancing two lives: the one I have now and the one I had before cancer. How about you? Recovering your sense of who you are, especially who you are in God’s sight, isn’t a process unique to cancer survivors. It’s an essential journey we all face. As you look at the struggles in your own life ask yourself:

In what ways has my sense of self remained constant, and in what ways am I becoming someone new?

What have I gained and what have I lost along the way? (I urge you to focus on what you’ve gained!)

How do I let go of what must be left behind and move on to a better future? (… If not better than where you once were, but better than where now are now.)

 

You don’t have to figure it out today. And you don’t have to figure it out alone. Talk to a trusted friend. Grieve over your loss, but don’t stay there. Talk honestly with God about where you are and who you really are in His sight. There are more pieces of your puzzle yet to discover! Let God who designed your puzzle help you put all the pieces together.

 

* Picking Up the Pieces – Moving Forward After Surviving Cancer