Tag Archives: Leukemia/Cancer

Infusions

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I was reflecting back on how many blood and platelet transfusions I had over the early months of this journey with leukemia, over 30. (When you donate blood, it really DOES save lives, mine included.) The only bad reaction was with a certain bag of platelets.

I still remember what surprised me at the time was that my mind remained calmly cognizant of each phase of the attack on my body. I told the nurse that my palms were becoming red and very itchy. Then my arms and then my feet and legs. Then my torso, with hives setting in all over. Of course within 15-20 seconds of entering my body, the infusion was disconnected. Then I told the nurse it was becoming difficult to swallow and finally that my throat was swelling and closing up making it difficult to breathe and talk. Someone from the Rapid Response Team arrived came running into my room from another part of the hospital. I was given three doses of antihistamine and a shot of steroids and an oxygen mask and within 15 minutes I was breathing clearly. Within 3 hours, all the symptoms were relieved.

Not always, but often, attacks on the body are sudden and you are clearly aware of them. But did you know that there are attacks on our spiritual being too? Unlike bodily attacks that seem to heighten our awareness, spiritual attacks seem to desensitize us at first, like a shot of lidocaine numbs our skin. Movies, books, magazines, and social environments are cunning like this. It might start with a cuss word or two here and there, a sexual innuendo (or more). Dishonesty and betrayal are presented as tolerable in the lives of our favorite characters. Moral compromises are rationalized. What keeps us from standing up and leaving the situation, tossing the media in the garbage? We think it doesn’t affect us.

Just as most of us try to take care of our bodies, we ought to be even more concerned with the attacks on our spiritual being. Think back on the last week or two. What attacks have their been on your spirit that maybe you weren’t aware of? In addition to filth, there are other forces that strive to get a stronghold in your spirit: uncontrollable regret, bitterness, anger, impatience with others, insistence on being right, depression, self-pity or striving to ‘succeed’ at the price of your relationship with your family and others. The list goes on.

What do you do? Ask for a spiritual transfusion. The Holy Spirit fights these battles with and sometimes for us. We just need to put ourselves in a place to receive that spiritual transfusion. Renewal awaits those who desire it.

The end of one adventure is the beginning of the next

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“Please, Aslan,” said Lucy. “Before we go, will you tell us when we can come back to Narnia again? Please. And oh, do, do, do make it soon.”
“Dearest,” said Aslan very gently, “you and your brother will never come back to Narnia.”
“Oh, Aslan!!” said Edmund and Lucy both together in despairing voices.
“You are too old, children,” said Aslan, “and you must begin to come close to your own world now.”
From The Voyage of the Dawn Treader, CS Lewis

It was a sad moment for Lucy and Edmond, realizing that their great adventure had come to an end. But the great Aslan reminds them of an important lesson we would do well to also learn:

The end of one adventure is often the beginning of another.

For me, there was the end of a good career and good health and the beginning of the battle against cancer. While not the adventure I had sought, it has not been without certain revelations I may have missed elsewhere. Then there was the end of the cancer (for now at least) almost a year ago and the beginning of a new life with new stem cells and all the blessings and trials that come with that. There is for each of us the end of the adventure of life as we know it and the greatest adventure of life after death!

For now, there is the end of this past year and the anticipation of the new one upon us. It is a time to consider wise words:
“There is a time for everything…a time to mourn, a time to stop mourning…a time to fight and a time to stop fighting.” (Ecclesiastes) Always, it is time to accept and fully embrace the life transitions given to us. It is a time, as Paul puts it, to forget what is past and to press on to what is ahead. (Philippians 3)

Imagine a new year being decidedly content and fully satisfied with God’s plan being unveiled in your presence, day by day. Imagine living by faith with reckless abandon the adventure to which he calls you. Don’t shy from it despite your pain, your doubts, your regrets, or your fears. Embrace this new year as a gift to be fully explored and enjoyed.

“Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:18-19

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.

Medical Update: What would you do without an experienced guide?

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This morning as I was unable to sleep, I found myself thinking back on the white water rafting trip our family took in Colorado years ago. As first time rafters, we were both excited and apprehensive about the moment by moment thrills of the experience. Our experienced guide, having been down this river many times, had both the mindset of being calm – because he knew what was around the bend – and also vigilant, because he knew the potential dangers that could arise at any moment. That’s how it is with me and my medical team. Being my first (and hopefully only) time down this river, I tend to see things through the experience of my current symptoms. My experienced and caring medical team is concerned with saving my life. The team agrees that my recovery is well ahead of the curve (thank you God and prayer partners!); but they have their eyes somberly set on what’s around the bend, especially in the next 6-18 months. This is the time it will take for my body to fully rebuild the immune system and regain strength and deal with oncoming threats.

An interesting component of the treatment plan is that while the goal is to grow the immune system, the approach is actually to suppress it in the beginning so my donor cells don’t attack my body. This is called Graft Versus Host Disease (GVHD) and was what led to my Failure To Thrive diagnosis the three summer months when I couldn’t eat or get much beyond bed or recliner. So I take daily medications to prevent my immune system from functioning even as optimally as it could with currently limited resources. The team monitors the degree of ‘fighting’ that goes on in my body, trying to maintain a balance. Some fighting is good; too much is dangerous. Gradually, they will reduce the suppressing medications to let my body take on more of the fight on its own. I am also working to get off the steroids that have helped me overcome the Failure to Thrive condition but have also wreaked havoc with other mental and physical functioning. Nearly seven months post stem cell transplant, I still make trips every two weeks to the U of I Hospitals for blood tests, lung treatments and follow-up consultation.

What’s around the bend? Continual protection against infections and increasing endurance and strength, and hopefully regain mental capacity; and trusting our loving God to guide us through the waters as we also journey into our new mission field. It is an amazing journey! I pray yours will be less dramatic but no less exciting and rewarding.

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."

What are you leaning on?

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I remember vacationing out west when I was a youth and being impressed with the vastness of the Grand Canyon. For an Iowa boy, standing at the edge of such an immense chasm was both inspiring and intimidating. Not being fond of heights to begin with, I was the one to approach the edge railing ever so cautiously. I thought I was doing much better with this as an adult but found myself being equally ‘vigilant’ standing at the edge of the tall pier in Newport Beach last year. My loving wife gently teased me about it as I tenderly clung to her (for life! :-)) as we admired the ocean view together. What can I say? Faced with the potential for danger, I like a sturdy railing! Something I know I can lean on and trust.

We need to know for SURE what and who we can lean on when troubles come. Have you ever found yourself leaning on your abilities to be successful or on your financial savings? Or your good health or knowledge and education? It is great when we are blessed with these but I’m sure you know how fleeting these all are, here one day and gone the next. It only took one 5 minute “You have Leukemia” conversation with my hematologist to reveal how all that would change in my life very quickly. Though I have been richly blessed with the love and support of family and friends, how many people have found that even these sometimes fall short when facing times of immense troubles?

So what can we lean on that is always dependable? Here is what I have found in my life and tested to be always true, always reliable and firm, always accessible and unchanging no matter what circumstances prevail, even a life-threatening illness: God’s love, his faithfulness, truth, grace, and power to overcome. He is more than a sturdy railing that protects us from falling. His Word tells the history (His Story) of unfailing compassion toward us. I have experienced this to be true. And since true, I know I can always trust it. And since I can trust it, why in the world would I not ACT on it?! After all, we always act on what we believe.

What troubles and suffering are you facing today? What sorrows and anxieties weigh on your heart? You really can trust them to God if you truly believe in him. His Word is true and applicable to every burden you carry. I hope you will be fully persuaded to not only believe, but believe to the point of acting on it so you can lean with all your strength. Lean with reckless abandon, fully trusting that what you lean on is completely secure, and fully experiencing all the adventure he intends for you.

“For great is your love, higher than the heavens;
your faithfulness reaches to the skies.” Psalm 108:4

“I Own You!”

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My sister sent me an interesting article written by a person with Meniere’s Disease. The comment that grabbed my attention in the article was the author’s observation that her disability sometimes screams to her, “I own you!”

Have you ever felt that way? That something in your life, your health, your personal relationships, your job, your debt, perhaps a destructive self habit…something cries out to you, “I own you.” Marcia and I were tempted by this thought at the very beginning of our journey with Leukemia. Even now we are periodically attacked with this thought. The ongoing demands of the very real symptoms insist on being attended to. They will not be ignored and we cannot escape them. But do these challenging realities really OWN us? Just because thieves continue to survey your house, that is not the same as breaking in and stealing from you or taking you hostage. And certainly you don’t leave the house unprotected.

A servant cannot serve two masters. We cannot be owned simultaneously by peace and fear. In an earlier post we looked at 1 Corinthians 6:19-20 which tells us “You are not your own. You were bought at a price.” (This may be an affront to those who think they can give part of their life to God and have the right to call all their own shots.) If you are a devoted follower of Jesus, your body (and mind) belongs to Him and His care. It is a temporary dwelling for an eternal and divine purpose. That is why we are able to persevere in faith through difficult trials (and you can too). We know to whom we belong. “We have this faith as an anchor for the soul, firm and secure.” (Hebrews 6:19)

We are not owned by our troubles unless we willingly surrender to them. What is the antidote for this? Developing an attitude of gratitude, praising God, for who He is, for what He has done, what He will do, and what He is now doing on your behalf. I would be glad to be healed of Leukemia, and believe I will be one day. At the same time, I am thankful I do not carry a heavier cross. I am thankful I do not bear this alone. I am thankful for a loving God who never abandons me. Even for a sense of humor that sometimes gives me a break from becoming too serious.

When the devil tells you about your troubles, you tell him about your Great God! Your troubles, whatever they are, do not have to own you. Say it out loud. “You (name the affliction) do NOT own me.” Draw close to God and He WILL draw close to you. It’s a promise.

Leukemia Update: A Journey of Perseverance

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Generally races are meant to be run fast, to be the first one to finish and win the prize. Four months after my stem cell transplant and eight months into this journey with Leukemia, I am still a novice at this marathon. But I know this: there is no fast about it. In fact, sometimes walking across the room before sitting down again makes it hardly seem like a race at all. But it is a long-range marathon of perseverance.

The last two months has been marked by loss of appetite, weight loss, and stomach distress. The docs don’t know what is causing it. Our theory is that the treatments killed all the good and bad bacteria in my GI system. Docs say it could take a year or two to build that up again (really?!) and that probiotics are out of the question because of their link to death in post transplant patients. Apart from the very occasional bouts that double me over, most of it doesn’t seem like it should be a big deal compared to the score of other symptoms Leukemia patients, including myself, face.

But have you ever noticed in your own life how some pain, though not as intense as others you have faced none the less carries a similarly heavy weight? Whether it is a relational tension, a financial burden, or a physical pain, there is something about the cumulative effect of an ongoing pain. That’s where it becomes a marathon of perseverance.

What gets you through those difficult times, when it is months, years, maybe decades or a lifetime of waiting for resolution? Though I have sometimes been known for my tenacity, in this situation, I have found there is no simple “gritting your teeth and bearing it” because it completely wears you down. (My accomplishment for this whole day was to change a light bulb today…with Marcia’s help… and that is more than I’ve done in a week.) There are times you think you can bear no more. It has only been God’s enduring response to enduring faith that is a suitable answer to Leukemia. Faith is grown day by day, sometimes moment by moment, by believing God’s Word and finding it to be true and applicable in every aspect of your life. It is finding real hope to be not a wish, but a reality not yet revealed.

Got faith? We need it to persevere the marathon race when trials come our way. The time for building faith and believing God’s promises is now.

“…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 1:3-4

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

Can You Sleep Through A Storm?

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Mark tells a brief, lively story of men who were tossed about in a boat by a violent storm. They woke up Jesus who was sleeping through it all. Awakened by their pleas, Jesus spoke and the storm was instantly calmed. His question to them is a challenge to each of us:
“Why are you so afraid? Do you still have no faith?” Mark 4:40

We visited the University of Iowa hospital today regarding bone marrow transplants and other options for my Leukemia. It confirmed many assumptions, answered many questions, and raised more. We are not afraid – God has seen to that. But all the numbers and statistics and prognostics raise more questions, until one has to just stop the craziness and ask God, “What do YOU want?”

It isn’t easy for an evidence based analyst like me to turn my attention from “the facts.” But in the midst of any problem, we have to evaluate whether the facts are actually valid or if there are other perspectives to challenge them. Faith is believing and living what is true even when the “facts” don’t add up.

Sarah Young wrote a marvelous daily devotional called “Jesus Calling.” (Thank you Connie for this gift.) I would recommend it to anyone, whether you believe in God or not. (I say this, though I think she might have written the book specifically to Marcia and me. :-))

We usually share our devotions at the beginning of the day. Foolishly, with today’s travel and appointments and follow-up discussions, it was delayed until late this evening. (Am I the only one who sometimes makes this mistake?) Today’s message says:

“Slow down and cling tightly to my hand. I am teaching you a difficult lesson, learned only by hardship. When your focus turns away from me, you grasp at other things. You drop the glowing gift when you reach for lifeless ashes. Return to me; regain my presence.”

A few minutes before reading this I had written these words in my journal: “FROM ASHES TO BEAUTY!”

Are there certain “facts” that are making you weary or beliefs you need to surrender today? Perhaps it is time to believe in a new direction…and to let God guide you through the uncertain future. Who knows? You may find a way to sleep through life’s storms.

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.”
Matthew 11:28-29