Tag Archives: Leukemia/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

 

Who’s your healer?

 

I saw a poster that read:

God is my healer even when my body tells me it doesn’t feel like it.

 

It was just the reminder I needed. My blood counts are still stubbornly slow to recover, 2 1/2 years after cancer and my strength continues to sometimes lag. Truthfully, I still get frustrated when I tire so easily. Sometimes my body tells me it still isn’t getting stronger. But I remember the day of my Leukemia diagnosis I couldn’t walk more than twenty feet; today I can walk 2-3 miles even if I sometimes need to rest. I just need to keep trusting God who is my healer even when I don’t feel it.

 

How about you? Is God your healer when you are depressed? Is he the healer of your illness, your pain, your grief, your emotional scars and disappointments? Is he your healer not just when things get better but also when they don’t seem to improve? Is he your healer when things don’t get back to normal or the “new normal” is not all you had hoped? Is he your healer when the difficult journey you’re walking takes you to a new and unfamiliar place?

 

We are complicated beings made up of body, mind, spirit and soul. Our thoughts and emotions and physical sensations all run around in circles trying to persuade us of a certain reality… one that is limited to their perspective. There is yet another reality – the real experience of our spirit when it is aligned with the Spirit of God. It is the same Spirit who spoke peace to Corrie Ten Boom in forgiving her captors. It is the same Spirit who gave strength to Richard Wurmbrand when he was tortured for his faith. It is the same Spirit who allowed Stephen to praise God and forgive the people who were stoning him…to death. It is the same Spirit who revealed the purpose of suffering to Paul. This same Spirit wants to speak peace to you in your troubling time.

 

Our spiritual reality is able to transcend the emotional and physical reality that shouts so loudly at us. But we don’t experience it naturally. It is a matter of cultivating our sensitivity to spiritual things. It involves turning down the noise of the world (and our emotions and bodies) and listening more carefully to to a “small quiet voice” that nonetheless speaks powerfully to the one who listens. It is the peace that calms the sailor even when the storm continues to rage around him.

 

I’m still learning. It seems to be a life long lesson. Thankfully, it’s not an all our nothing experience. But the journey is worth it because the alternative is surrendering to our circumstances and how our noisy soul interprets them. Are you ready to let God be your healer today…even if your body tells you it doesn’t feel it?

 

From Surviving to Thriving

 

Two years after my stem cell (bone marrow) transplant, I’m reflecting on how this journey has changed us. I say ‘us’ because if you are tightly connected to family or friends, you know that others share your journey and the caregiver bears a very large portion of the burden. It’s not just a cancer phenomenon. Name your battle, be it the death of a child, divorce, depression, chronic illness, or unresolved grief, few escape the path of suffering and sorrow. And so while I reflect on my journey through AML, feel free to adapt the reflections to your particular challenges.

 

Life altering events often come with no warning. One day everything is fine and suddenly your world is turned upside down. The prognosis of “12 weeks to live” quickly got my attention. There’s no room for denial. The focus was survival. The few options were evaluated and a treatment plan was quickly initiated. One month of chemo became two because the first chemo round didn’t knock out the cancer. Then after achieving remission, the aggressive nature of the cancer required a third round of heavier dose chemo followed by a stem cell transplant. What we didn’t realize is that surviving and enduring the transplant was to be a much tougher and longer battle than beating the cancer.

 

You know the fight to survive is not won by all.  But if you do find that you’ve survived whatever overwhelming ordeal you might ask if you will ever learn to thrive again.

 

Authors Sherri Magee and Kathy Scalzo describe four phases of transitioning from survival to living well*:

1. Recovering a sense of self
2. Recovering a sense of control
3. Recovering a sense of meaning
4. Recovering a sense of the future

 

The authors liken these as four ‘corner pieces’ of the recovery jigsaw puzzle. Understanding these helps us figure out how the other parts of recovery fit together to make us whole again. If you’ve gone through the valley of surviving a sudden life change you might be wondering, “Is there anything beyond mere survival?” The answer is ‘Yes.’ God intends for us not only to survive but to thrive, that is to live an abundant life. This doesn’t look the same for everyone. Getting “back to normal” may be an unrealistic goal, but there is a ‘new normal’ to be discovered. You may be creating a new picture, different from the one you thought you were putting together. And along the way you find that others hold some of the pieces to your puzzle and you hold some of the pieces to theirs.

 

It’s not an easy process, but it’s possible and it’s worth it. “My experience broke me down,” says transplant recipient Kristina. “But it also built me back up.” Perhaps it will help to spend time reflecting on the four ‘corner pieces’ of your own puzzle. As you do, remember that God isn’t ‘one of the pieces.’ He is the puzzle designer. Give Him all your broken pieces and let Him help you put them back together as you transition from surviving to thriving.

 
Tomorrow: The recovery of self
 
* “Picking Up the Pieces: Moving Forward After Surviving Cancer”

 

Give thanks…when?!

 

 

“Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16-18

 

It is easy to thank God when times are good and things are going smoothly. But we are instructed to give thanks in ALL situations. Why? Because it is God’s profitable will for us. Now, I admit giving thanks was not the first thing on my mind the day I received my cancer diagnosis. My body was already broken down and I was so exhausted I didn’t know what to think, but I know giving thanks wasn’t at the top of my list. And yet, with the passing of a few weeks, it was easier to give thanks in – and for – revealing the cancer in my life. Why? Because it also revealed the cancer in my spiritual life. Depending too much on myself and ‘my rights’, lacking more discipline in my prayer life, and pride were as much of a cancer as the Leukemia that was killing me.  Furthermore, my physical cancer revealed  God’s protection over me. Had I pushed ahead with my plans to relocate to South America right away, I likely would not have been diagnosed, and that would have been a death sentence. If diagnosed, I likely would not have received the expert level of care that I received here.  Not only did I find God’s protection but also His provision. He provided a platform for reaching others with His truth and grace in the hospital environment, patients and staff. He provided time for me to grow up (to mature as James writes in the below passage). He provided opportunity to draw Marcia and me even closer together. He provided opportunity to learn and practice humility.

 

As you look back on the tough times in your life, can you see how those difficulties yielded benefit to you? Maybe you would still choose to have avoided them if you could. Maybe the pain of those memories continue to scar your life. But haven’t they also provided some good? It is the intent of our Great God to bring good out of distress. We are so used to weighing goodness on a scale of our own feelings, our comfort, and our personal gain, that it becomes so difficult to see how tough times can play out on the grander scale. Yes, there are seemingly senseless and completely unjust acts. Yes, the rain does fall on the just and unjust alike. But if we cannot find any reason to give thanks and pray continually even in those times, what can we hope to become? If our faith is only tested to be strong in the easy times, of what real use to us is it?

 

Whatever happens today, practice giving thanks, with continual prayer and petition to God. Know that He will not abandon you and He desires to redeem goodness from bad situations.  Ask Him for strength and wisdom to respond well, to persevere, and to finish His good work in you, so that you lack nothing.

 

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4 

 

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:4-7

 

 

Medical Update – June 2014

 

 

Some folk like to know, so from time we post a medical update on my Leukemia recovery. Fourteen months after transplant and a year and a half since this journey began, the doctors are exceedingly pleased with my progress and not at all concerned with what seems to me a long recovery time.  Most of my blood counts are returning to low normal range with a handful of ones still struggling. The medical team seems especially pleased that I’ve had no fevers or hospitalizations. (Thank you God!)

 

I was glad to get 3 more ‘baby’s” vaccines, including DPT. I may get one more in August; maybe some of the live vaccines next spring if my immune recovers enough by then. They are hesitant on giving live vaccines even then as there is a 50/50 chance of contracting the disease. Along with the ‘baby’ stuff, I continue to require my preschooler naps to contend with lack of strength and endurance, though that too is slowly improving.

 

I had completely underestimated the impact of the disease on my body and the time it would take to recover. They say it is common to take 2+ years to recover from this type of Leukemia and transplant operation… or to find your new ‘subnormal.’  The seriousness of the transplant is deceptive because the infusion of stem cells was so routine; it seemed just like one of my 30 some blood transfusions. (Thanks everyone who give blood on a regular basis. It really DOES save lives!) But the process of destroying your entire immune system <think Galatians 2:20 and 2 Corinthians 5:17> is a major deal. It’s a journey of enduring patience and trust.

 

As good as all the reports are, they want to continue to keep close reins on me. So no letting up on the frequency of labs and treatments or the current med regime to keep Graft Versus Host Disease (GVHD) at bay.  I will also continue regular pulmonary treatments to reduce the chance of lung infection.

 

I’ll have to manage the fine line between exertion and rest in order to regain strength and endurance. I’m trying to work on regaining mental acuity and concentration, but that is a harder row to hoe. The ‘cancer brain’ continues to pose some cognitive issues…hopefully I will grow out of these. (I suspect some of you thought I was a bit brain-damaged BEFORE all this happened!)

 

God is good all the time, and we are pleased to wait on His perfect plan in and through all of this. Isn’t that true of each of us, whatever journey we are on?!  I am not remiss in remembering the pain others are going through. Except my friend Bob who lost his AML transplant battle recently. Now in heaven, he is doing better than ALL of us! Please pray for his dear wife, Betty.  Thanks for your continued prayers.

 

Live life fully each day while time remains!

 

 

God’s glory gives light

Have you ever noticed how suffering has a way of stripping away the layers of who you think you are, to reveal who you really are inside?  Who I am as a man, as a leader, as a provider for my family – a father, husband, grandfather – a contributor to my church, an influencer of others for the kingdom of Christ… All these have changed, some in small ways, others more significantly, through the journey of Leukemia. This is good when it involved surrender to God and being molded in His image. But there is also a certain grieving of the journey from Gal 2:20 and 2 Cor 5:17. It seems we carry so many labels and hold some of these dearly close to us. Some aspects of these need to be stripped away. The remainder all need to be submissive to the one label of God’s child, devoted follower of Jesus.

 

Lately, I am reflecting on the glory of God filling his temple (2 Chron. 5:14 and many other verses). I think on 1 Cor 3:16 (and others) where we are reminded that we ourselves are the temple of God. It follows of course, that His glory should fill us, that others should see his glory when they observe our lives, filled with his presence.

 

It is like the story of the little girl who asked her mother, “Is it true that when we ask Jesus into our life that He lives in our heart?” The mother replied, “Well yes dear, that is right.” “And isn’t He the light of the world?” the girl continued. “Yes, that is true,” replied the mom. “Then shouldn’t others see Him shine through us?” the girl asked. Out of the mouth of babes comes a truth for us. Some extent of the glory of God should be revealed through us if His Son lives in us.

 

This label of glory-filled-holiness is a worthy (and daunting) one to consider.  It is our true identity that no one and no circumstance can strip away unless we let it.  It is a banner we can only carry by continual surrender to Christ in us, the hope of glory. When He carries this banner others can see Him…in us.

 

What other identity rivals this one? Let God’s glory shine in and through your day. For the glory of God gives light!

Medical Update (May 2014) – fighting the battle

Mostly good reports from this past week’s U of I visits:

Most blood counts continue within low normal range.

Low immune globulin but I am fighting infections well.

Excellent pulmonary functioning scores.

Can now wear short sleeves with sunscreen. Whoo hoo.

Received childhood vaccines for polio,Hep B, and H.influenza B.
(More to follow in coming visits.)

Bone density scan reveals osteopenia but not yet osteoporosis. (Adversely affected by chemo and prednisone treatments & age.)

Constant muscle/joint aches due to GVHD not RA.

Revisit in 6 weeks.

The interesting thing about the ongoing Graft Versus Host Disease (GVHD) skirmish is that all you can do is arm yourself with the protective ‘armor’ of medications, exercise, and rest. Then try to stand firm while the battle wars within. It is like the battle we each face daily against elements of the spiritual world. We cannot see the enemy, but we experience the blows. Our job each day is to put on the protective armor of God (Ephesians 6:10+) and to STAND firm. And when the fighting is over, to stand still.

Let’s be found standing firm, brothers and sisters, equipped with the belt of truth wrapped around us, the breastplate of righteousness, the boots of peace, the shield of faith, the helmet of salvation, and the sword of the Spirit, praying always in all situations. Our own strength is not sufficient. But God’s is.

Seeing is believing – Believing is seeing

They say that seeing is believing. But believing is seeing in a new way and leads to action.

Throughout this long journey through leukemia, my dear bride has consistently demonstrated her loving devotion to me. She has encouraged me, comforted me, cared for me, and gently loved me. Sometimes she has pushed me when I needed to push forward. I have always known her love. But seeing this tender expression of devotion over the past year and a half of struggles is a ‘believing’ moment. And we always act on belief. And so I am led to love her more and to draw closer to her.

In a magnified way, God has been faithful to “show up” each and every day through this experience. His mercy has been sufficient for even the toughest of times. Of course, I knew of his greatness and faithfulness before I became ill. I knew His Word is always true and applicable for the needs of life. But seeing is believing in a deeper way. Since I know he is faithful and that His Word is true and beneficial, and I have seen it to be poured out in the darkest of circumstances, it only makes sense to TRUST God and depend on his Word for daily living. Seeing is believing and believing always leads to action. If we don’t act on what we believe, then our beliefs are diluted by fear or selfish ambition or pride.

God tells us to walk by faith, not by sight. In other words, don’t get so caught up in the things we see in this world, but lean on Him for those things that are yet unseen or not clearly seen.

Believing is also seeing. Our belief allows us to see ourselves and others through God’s eyes. Because we believe Him to be faithful we can see our circumstances differently, as events that shape us but not control us. Because we believe, we can see the fruits of a faithful life are more rewarding than the spoils of a selfish one. Believing we see the world differently, through God’s eyes. What do you want to see today?

Shielded

Someone once commented that we have to always be on our guard because the armor of God (Ephesians 6:10+) doesn’t provide defensive armor for the back of the body. Thanks to Cindy for finding Isaiah 52:12 for me: “… The Lord will go before you, the God of Israel will be your rear guard.”

One of my aunts sent me an article by Pastor Dave Hess, entitled Shielded, that speaks to a similar aspect of God’s protective shield.

Pastor Dave contracted AML, the same type of leukemia as I have, when he was 39. He talks about not expecting to live throughout the week, never mind a year. One member of his congregation reminded him of a verse about God being a shield around us. (Psalm 3:3 – You are a shield around me oh Lord.) Dave had rather dismissed the reminder as a nice gesture, but “real life miracles today?” Then at the end of his last round of chemo, his appendix burst. Surgery wasn’t an option because his platelets were so low, he would probably bleed to death. And his white counts were so low he couldn’t fight the infection without the surgery. Amazingly, his white blood levels rose and his platelets multiplied enough so the surgeon could at least proceed with exploratory surgery to assess the damage.

The doctor was amazed by what he discovered. “I’ve never seen anything like this,” the surgeon explained. Holding up a photo, he pointed out what remained of the burst appendix. Then he pointed to a circular tent-like structure composed of tightly knit adhesions. Making a circle, he said that this kind of scar tissue is the strongest known and normally is seen only after someone has had surgery. He explained that this protective scar tissue ‘wall’ contained all the toxins within it. All the adhesions acted as little ‘shields’ packed together to protect the rest of Dave’s body! (Yes, miracles do still happen.)

What kind of shield do you pick up when you are in trouble? God provides us with a shield of faith to protect us from the fiery darts meant to harm and dismay us. And he himself provides a shield that surrounds us with goodwill (Psalm 5:12). He promises: “under his wings you will find refuge; his faithfulness will be your shield and rampart.” (Psalm 91:4)

When getting dressed and changing clothes, let’s remember to also put on the shield of our faithful God.

Medical update March 7

 

 

I know some of you tune in especially for medical updates. Today’s 11 month post transplant check up was quite routine and pleasantly unexciting. The docs think I am making good progress and reduced the autoimmune suppressant drug a little. This invites a potential increase in GVHD but we will keep close eye on this. Further reductions will be very gradual. I also was able to get off another medication that they have been reducing over the last five months or so.

My next check up is on my one year transplant anniversary next month. I’ll get my monthly preventative lung treatment, a lot more lab tests, a bone marrow biopsy to check for the possible return of cancer or other problems, and of course doctor consult. I am also scheduled to get some more childhood vaccines over the next few months, since I lost all my immunizations when they killed my stem cells. It will take over the next 13-15+ months to get all the immunizations and there are some that they say will be too dangerous so I won’t get those.

There is still a long and unpredictable road ahead. But also there are lots and lots of things for which to give thanks…and we do every day. I hope you are in that same boat with lots of reasons for thanksgiving, especially God’s steadfast grace, strength, and love.