Tag Archives: Stem cell transplant

Recovering a sense of meaning

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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.

 

 

One year remission

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It seems like it has been a long year. With leukemia, milestones like the anniversary of your first year in remission from cancer seem pretty important. From a medical perspective it appears that the more distance you put between yourself and those events, the better the outlook is for the future. Of course, God’s plan for the future is what really matters, regardless of what the prognostic statistics say.

A huge thanks to the Mercy Hospital staff who made remission possible through two rounds/12 days of chemotherapy and nearly 60 days of loving care given to both Marcia and me. Now, just two more months until we celebrate with the University of Iowa transplant team my first year after stem cell transplant. I’m told mine was their 3000th transplant so I reckon they have cause to be very good at what they do. And they too have shown me great care and consideration during my recovery thus far.

Marcia has carried out her long series of demanding caregiver tasks with such amazing love and dedication. How could I have made it this far without my bride’s loving attention?!

God’s promise that his grace IS sufficient for my needs and his promise that I win whichever direction things turn have been constant sustenance for my soul.

What is ahead? I don’t know. The path seems to take a turn every 2-3 months, requiring us to keep our focus on our current footing and next few steps. Have you noticed that in your path too? Just when you think you have your sense of direction, something changes and you have to make adjustments to your journey.

Have you found the one thing that does not change, regardless of the condition of the path? In our journey, it has made all the difference in the world. Experiencing the steadfastness of God’s love and grace makes each day possible, not easy, but possible. It has caused us to cultivate our grateful hearts. It is the reality of practical faith, beginning with trusting in small things, to trusting in all things, that makes the experience real. Not easy, but real.

May your path be filled with such practical hope of knowing that wherever you go, however difficult the path, God is ready to go with you.

End of the year medical update

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People keep asking, so I gather it is about time for a near end of the year medical update on my leukemia. Really there is not a lot of news to report, one year after diagnosis and eight months after stem cell transplant. I was able to get off the steroids and insulin and also maintain an appetite this time. We don’t know why the tremendous increase of fatigue causing me to sleep more than half of each day and attenuating muscle pain. It could be side effect of the blood thinner or GVHD. Doctors are unable to determine. I am able to pull it together to meet with folks for an hour or two, so I gather it will resolve with time. Marcia is a good encourager when it comes to exercise and getting into the community.

My other symptoms are minor in comparison to what others are going through at this time and the doctors are quite happy overall with the progress. (“You are still alive, that is good, yes?”) They remind me that it is a long process and regardless, vital childhood vaccinations will not be completed for 18-24 months. The doctors are doing an admirable job at managing the amount of GVHD that manifests itself. They do this largely through medication, and then another medication to manage the effects of the first one, etc. 🙂

As I have commented often before, this unexpected journey has allowed Marci and I to discover blessings we would never have found on another path. Suffering is seldom a welcome stranger. but if it comes to your door, do not be too quick to dismiss it. It is often key to us discovering our real purpose in life.

AML daily routine

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This post is for those who follow this blog while traveling your own cancer journey. Each person’s journey is unique but there are commonalities that cross different illnesses.

At 11 months post AML diagnosis and 7 months post stem cell transplant, the daily routine continues to be preoccupied with avoiding infection and staying healthy to what small degree of control there is over that. There is a lot of hand-washing and everything is done mindful of potential infection. Without being germophobic, you are aware that one infection can be a game changer for an immune-suppressed body.

One challenging aspect is maintaining a rigid routine of meals, snacks, medications, exercise, rest, and daily injections. This schedule increasingly governs the activities of the day. (You eat when it is time to eat, not when you are hungry.) Some of this may decrease if the drug-induced diabetes and DVT/blood clot treatment is resolved. Weekly and biweekly medical appointments and lab tests add to this regiment. So in one sense, you find yourself medically retired but with a new full-time ‘job’ caring for yourself.

Perhaps it is a blessing that nothing stays the same. Each pain has its season and then surrenders to something new. Changing medications present both different solutions and side effects. Some affect the body, some affect the mind and emotions. It requires a lot of patience and perseverance from both patient and care giver. Emotions sometimes unexplainably present themselves. Sometimes the day is full of color; and other times more gray, and you find there is only so much control over this. Several months later, you find yourself still beat up by cancer and chemo, and still recovering from the welcomed ‘invasion’ of a new graft immune system. The body is not only under chemical and physical attack but spiritual attack too.

You may also experience an overwhelming sense of vulnerability. This unexpected leukemia-induced blood clot is an example of a small unavoidable event that reminds you of the fragility of life. When I celebrate how well I am doing, my medical team regularly reminds me of this ongoing vulnerability. It poses a challenge for living each day well and fully, with sober thanks for the opportunities each day gives to enjoy the grace God gives us.

The good news in all this is that we are not slaves to our condition. Walking in faith is a matter of willfully choosing to believe that which you know is true, but just cannot see, or experience. Your emotions may be those of unexplainable yet pervasive sadness, or disappointment. But the spiritual reality is that we are not slaves to our emotions. The physical challenges may be extensive, but we are not slaves to our pain. Relationally you may feel alone in the journey, but the reality is that others’ prayers are lifting you up and that God will never leave you.

Experience the spiritual reality that overcomes your physical and mental perception. Let God’s presence guide each step of the journey.

Medical update

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Some folks have asked for more medical updates on our journey with leukemia. I usually weave these into the post for the day. And you can always use the blog search button to search for key words like update, Leukemia, etc. That said, here is a separate update.

Things are going so well, there’s not a lot to report, (thank you God). I made it through my first six months post stem cell transplant without fever or infection which is very good news. I continue to take precautions against infections but am generally released to normal interactions.

Except for the three months of not eating and being mostly bed ridden, the Graft Versus Host Disease (GVHD) has been minimal. And that seems to be resolved with the steroid treatment which has returned my normal appetite and allowed me to start gaining some of the 33 pounds lost during the spring and summer. The steroids again caused temporary diabetes which isn’t as stable as the first time around, but then it’s temporary. I am weaning off the steroids now and hope to be off them and the insulin by Thanksgiving. Steroids are a wonder drug but also can cause you to be ‘wired’, anxious, irritable, sleepless, etc. so it will be good to be off them!

I am tired every day and have to rest more than I am used to doing. But I really enjoy having more energy than I did and being able to get out in the community, take up to 1 – 1 1/2 mile walks, visit with more people (!) and start to help a little around the house, putting dishes away, and small things like that. Problem solving, concentration, and memory impairments continue to be a frustration but hopefully will improve over the next year or two.

I am excited to have started my childhood vaccinations since these were all lost in the treatment process. I got my first child level pneumonia vaccine and a four-strain influenza vaccine this week. I’ll get more pneumonia vaccines, working up to an adult version, plus most the other childhood vaccinations (polio, MMR, Diphtheria, tetanus, etc) over the next 18+ months as my immune system repairs itself enough to tolerate live vaccines. Taken too early the vaccine could transmit the actual disease. Due to that risk, the team tells me I might not be a candidate for some vaccines like chicken pox and shingles. The schedule for vaccines puts off a Bolivia move until summer of 2015 at earliest. Another factor influencing that is it may take another year or more to increase the number of bone marrow cells to their full numbers. Currently I am at 25-30% of normal production. Platelets, which God created to repair and heal our system, are still frustratingly low. Some of these things are just a matter of waiting.

Of course, the really good news is that the last bone marrow biopsy shows NO abnormal cells, <1% "blasts (normal), and NO indication of the very rare 10;17 chromosomal translocation that started this whole leukemia process in the first place; also NO indication of the presence of the 'aggressive' chromosomal markers at CD7 and CD56. Cancer continues to be in remission. Next test isn't scheduled until April 2014, unless problems occur.

So overall, an excellent report. Life is much slower these days, with increased time for meditation, reflection, and prayer; time for enjoying God's creation, and redeeming the time we have with others. JRR Tolkien's famous quote is applicable for all of us:
"All we have to decide is what to do with the time given us."

To quote Indiana Jones, "Choose wisely."

Celebrating six months since transplant

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As I approach celebrating six months (this Friday!) since my stem cell transplant, I find myself coming back to convictions that have steadily grown during my unexpected journey with Leukemia:

I find myself actually thankful for how God has spoken to Marcia and me through this unexpected journey in ways I don’t think we would have experienced on any other path. To be honest, sometimes more thankful than others, but He continues to bring us back to center when we are done with our self efforts and complaining for the day. :-). I have also been so thankful for opportunities to visit with people and share in their lives! Those have been rewarding times of renewal and of redeeming the time we have while we have it.

God has faithfully affirmed things we knew to be true and planted them more firmly in our hearts. And even when His plan didn’t include removing the pain, He never ever abandoned us. He reminded us that sometimes he calms the storm; sometimes He calms the sailor. Even when the tensions that come with a household invaded by cancer, His faithfulness prompts our commitment to draw closer – to Him and to each other. His joy, sometimes more one of inner contentment than gushing effervescent bubbly joy, becomes strength to those who trust Him.

Whatever long-term struggles you face, and even when life is going well, each day is a battle for the mind. Being aware of making daily choices that lift us, not enslave us, is crucial, isn’t it? Sometimes I don’t fight the battle as well as others. Sometimes I keep on fighting when it is time to simply stand in God’s armor and let HIM fight for me. It is true that faith makes all things possible, but not easy.

I have learned that most everyone faces tough battles that include physical illness, relational tensions, work stress, financial struggles, battles for the mind, and all sorts of grief and sorrow. I wish I could tell you a way to escape them, but we won’t in this world. However… we don’t have to remain slaves to their mental and spiritual bondage. We have a loving God who cares for us and is ready to help us become victors and experience a peace we couldn’t otherwise expect…even as the storm rages within and around us. The only hope for victory I know is to surrender our complete trust to Him….all of it, in all things. And for me, it is a hope for the soul, like an anchor that is firm and secure. I know today, I need to consciously shorten the anchor rope so I don’t drift farther than I should. (Hebrews 6:19)

Be blessed in growing your thankful heart and in trusting one who is completely trustworthy to bring you a peace you won’t find anywhere else.

A Reflection on Six Months with Leukemia

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Six months ago today I received an 8:00 a.m. phone call from my hematologist. His conversation opened with three words: “You have Leukemia.” I remember thinking that couldn’t be but Leukemia it was, and later revealed to be the 12th diagnosis of this particular form of Leukemia in the world, meaning we were entering unknown territory.

What followed in this unexpected journey was an adventure I would not have chosen, but also one which would reveal truths and blessings I could not have discovered on any other path. Through the various pains that come with treatment of this rare chromosomal condition, I achieved first remission of the cancer at the end of January (Four months cancer-free now!).

In March, I made the toughest decision of my life. After challenging the doctors on every front, I was finally convinced that even though I was in remission, this particular cancer was so aggressive that it would most certainly return unless I had a stem cell transplant, which required a higher dose and level of chemo drugs which would also bring about my greater challenges. And so Galatians 2:20 has become very personal to me (“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.”) I had to completely kill my immune system and my DNA before I knew if the donor cells would successfully engraft in my body. While aware of the spiritual implications of a born again believer being such an imperfect host for the Spirit of Christ, I now had to face the reality of being a completely vulnerable host to my donor’s new cells. Where I had surrendered (oh so imperfectly) my identity to Jesus, I was now surrendering my DNA identity and very physical survival to this new donor process.

There are no guarantees but two months later, the process seems to be going exceptionally well. Yes, one infection can set it all back; even become an end-of-game scenario. But we sincerely believe –and are planning on – continuing the ministry God will grant us for other twenty or more years, including a delayed return to Bolivia for full-time missions.

It’s been a hard enough battle and one I would not want to repeat, though probably mild in comparison to some other’s struggles. But I have come to be thankful for the cancer that has brought me to experience the powerful truths of God’s Word. What I accepted in faith before has been tested and found to be true in very practical ways:

  • His grace IS sufficient for me.
  • His strength IS revealed in my weakness.
  • His mercy IS new every single morning.
  • His presence in me IS able to calm me even as the storm rages within me.
  • I CAN overcome the challenges of life if I am truly a new creation.

TODAY can be different. You don’t have to have a major life crisis to change your path and pursue a full and meaningful life. What challenges are you ready to turn over to God, once and for all and pursue a relationship with Him that allows you to trust Him more?

“Therefore, if anyone is in Christ, the new creation has come; The old has gone, the new is here!” 2 Corinthians 5:17

Two Month Progress Report

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It’s hard to believe that it has already been two months since my stem cell transplant. In many ways God has blessed me to be way ahead of the curve. For example, the engraftment of my donor cells took place in one month versus the expected three. I have had comparatively quite a bit of energy and few significant issues. A low grade fever last night was quickly resolved, indicating to me that the donor cells are doing their job and also reminding me how important it is for me to continue precautions, especially during this first 100 days. I am able to get out into the community with a mask, while avoiding large crowds. I miss being at church and hope to return as my immunity allows me to be around larger groups of people. I am able to visit with healthy people. In fact, even though visits sometimes tire me, they also pump me up, so the overall effect is a positive gain. This Leukemia experience has revealed to me how lonely chronic illness can be and causes me to reflect on how sensitive I have or have not been to others’ needs when they were ill. I need to do better.

Going off the steroid has led me from mania to extreme fatigue. (I can’t believe I needed two naps today) and the skin burns are getting old. Mental acuity is a bit improved, allowing me focus on budget and project planning for an hour or so at a time. Even though you cannot ignore challenges like this, you can rise above them. my brother’s wisdom has helped me quite a bit:

We can’t focus on what’s been taken away. We have to focus on what we have been given.

This has been very applicable in our situation where health, freedom, job/income, abilities were all taken away at once. But what we have been given is a closer relationship with each other and with God, a greater sensitivity to our real identity in Christ and to others, and time to heal and to minister to those around us.

Focusing on what’s been taken away brings despair and regret. Focusing on what God has given us brings hope, thanksgiving and joy…and a renewed passion for living fully for Jesus.

What things have been taken away from you that have captivated too much of your attention? Focus instead on the things you have been given and find the joy and peace that come with cultivating a thankful heart throughout each day.

“But seek first his kingdom and his righteousness, and all these things will be given to you as well.” Matthew 6:33

Transplant Update – 3/19/13

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The University of Iowa has found a ‘perfect match’ for my bone marrow (stem cell) transplant. They are working toward admission on 3/29. This is good news; from the medical viewpoint this is my best chance for survival to two years and beyond. Here are answers to some of the questions posed to us:

What is a stem cell transplant and why do you need it?
The transplant transfers bone marrow stem cells from a healthy donor to a recipient whose body is unable to produce healthy blood cells. The transplant is intended to reduce the risk of a relapse of the cancer.

How do they find a donor?
People under the age of 45 can register at www.BeTheMatch.org to be a marrow donor. DNA is collected using a cotton swab sweep of the mouth and simple blood sample. The HLA tissue type is entered into the computer and made available to transplant centers around the world. Later, a blood sample is taken to do a tissue type match of ten markers (5 each for the donor and recipient). My donor is a 10/10 match.

What does the process involve for the donor?
The donor is given a medicine to increase the number of stem cells released from the bone marrow to the blood stream. In an outpatient procedure lasting 5-7 hours, they will have their blood withdrawn through an IV, processed through a machine to remove the stem cells, and then have their own blood returned to them through another IV.

What is the process for the recipient?
The recipient is admitted to the transplant center a week before the transplant. A regimen of high dose chemotherapy is given to destroy the recipient’s bone marrow and suppress the immune system. Then the donor’s stem cells are infused via IV.

How long do you have to be in the hospital?
The recipient stays in the hospital for 4-5 weeks or up to three months if serious complications arise.

What type of complications might there be?
The donor’s blood cells may attack the recipient’s body or the recipient’s cells may fight the grafted cells. Both problems are common and range from mild to serious even life threatening consequence. Infections are also a significant threat since the immune system is compromised.

Will you be cured after the transplant?
There is no real cure, but generally healthy recipients who survive the transplant have a good chance of living their full lifespan if they can make it to two years without relapse of the cancer.

Thanks for your prayers. We believe God is not done.

U of I Update: Feb 9

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image Several folks have asked about the results from our consultation with the University of Iowa. They took 11 vials of blood (!) and pretty much confirmed what we knew and filled in more details about this journey with cancer.

My particular Leukemia is a very resilient one. But we’re told that I am a good candidate for bone marrow (stem cell) transplant which is my only realistic medical option. They suggest a transplant offers me a good chance of living another two years, if I don’t have a relapse or get a severe infection or other potential complications. Patients who make it to year two can still have relapses, but also could live for many more years, with or without complications.

As we quoted Dr. Steve in an earlier post, statistics are pretty much insignificant compared to the plan of God. We believe, and are responding accordingly, that God intends to bring us through this valley together; that the plans he has established for us are not yet complete.

Meanwhile, I will get more chemo, monthly for 3-4 months to keep me in remission. I will continue to get blood and platelet transfusions because my body is not keeping up with production demand. There will be both harder and productive, rewarding days ahead.

We think we are doing a better job of being attentive to the numbers but also not being controlled by them. We are challenged by this daily but God continues to graciously bring our attention back to Him.

This is of course one of the life lessons from this ordeal: regardless of the trial you face (cancer, chronic pain, relationship problems, financial, work, over eating, etc), the solution always is to take our focus off the problem and turn to the One who can lead us through it. It is not enough to know the truth; we have to practice it many times daily.

Thank you for prayers. As God is using this time to draw us even closer to Him, we encourage you also to draw close to Him. He always is ready to listen to us and to speak to us through His Word, through circumstances, through His people, and through His Holy Spirit. Seek Him for the very best adventure of your life.

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.”
Romans 15:13