Tag Archives: GVHD

Recovering a sense of future

 

When life comes crashing down, either suddenly or over the crushing weight of burdens carried too long, our vision becomes clouded and it’s hard to imagine a better future, or even any future at all. But recovering a sense of future is necessary to transition from surviving to thriving… to living well today. Despite the pain, sorrow, and disappointment that darkens our world right now, we need to recover a hope for the future.

 

Robert was one of the NYC firemen who responded to the 9/11 attacks on the World Trade Center. But experiencing that tragedy didn’t prepare him for the crisis he experienced when diagnosed with crippling MDS four years later. Losing his job to disability and surviving a stem cell transplant, he had to redefine how he saw himself, the limited control he still had in his life, his sense of purpose and meaning, and his sense of the future.

 

“I’m still dealing with GVHD, as well as weight gain and mood swings from steroids. The hardest part is not being able to keep commitments because I never know how I will feel from one day to the next. It’s hard to accomplish tasks I set for myself. On the positive side, I’m getting better. My fear about getting sick has decreased. I don’t need blood transfusions anymore and I don’t worry about blood tests. And even though I miss working, it’s a relief to not have to worry about returning to work and wondering if I’d be able to perform my duties.”

 

“There was never a time when I didn’t look to the future. I worked toward short-term goals, like getting my central line removed, controlling my GVHD, and being able to quit taking steroids. Some days, I might be struggling with fatigue or just feeling down, but…once I’m on my feet I am able to keep going. Sometimes it’s hard to accept the changes I’ve been through, but I’m still getting better and adjusting to my ‘new normal.’ The main thing is that I’m here for my family and to see my kids grow up, and that gives me something to look forward to.”

 

Boy can I empathize with Robert! It’s like he is reading a page from my Leukemia journal. Keeping an eye on the future, without losing your focus on living well today, is a crucial element to making a successful transition from just surviving a tragic circumstance to living a thriving life. And our future is not just tomorrow or next week or even the years to come. Our greatest hope for the future is found in spending all eternity with God and reuniting with loved ones who have gone before us. Living with the future of heaven in mind is a great motivator for living well today!

 

Some thoughts to ponder as you consider the future:

Am I learning to better accept uncertainties in life?

How can I better adapt to uninvited change in my life?

What practical steps can I take to live fully today while planning for tomorrow?

 

If you struggle with the uncertainties that come with change or the thought of an unknown future, talk about your concerns with a trusted friend. Include God in your honest conversations. Recovering a hopeful sense of future helps you live purposefully and well today.

 

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

 

 

“A grenade in your dream box”

 

That was the expression used by my oncologist at my 2 year post transplant evaluation. It was his folksy yet compassionate way of acknowledging the impact this troublesome journey with cancer and reluctant transplant recovery has had on our dream of mission work in Bolivia. The latest medical counsel is “Wait…” at least until my health stabilizes. We had been preparing ourselves for this news when my GVHD recently returned. We’re looking to a new short-term treatment intended to derail what seems to be leading to a repeat of my earlier Failure To Thrive diagnosis. It could be much worse, so we’re thankful.

 

As we left the doctor’s office, this unusual expression lingered in my mind. And I wondered, have you ever had a grenade in your dream box? Something that suddenly, unexpectedly, and explosively disrupted your greatest plans and hopes? Perhaps Joseph felt that way when he was abandoned by his brothers or when he was later falsely accused and thrown in prison. King Saul was constantly throwing a grenade in David’s dream box. Fourteen years separated David’s anointing and actually becoming King. Certainly, the disciples must have been shell-shocked when their Lord’s body was taken down from the cross. We remember the long sessions praying and counseling with friends who lost a child at much too early an age. I recall working in a nursing facility where two women were in agony the same night; one whose body was failing while she pleaded for life and another who pleaded for Jesus to take her home, but her body would not surrender. I remember the gentle old man who visited his wife every single day though Alzheimer’s had quickly robbed her of every memory of him. Some dreams seem to be lost forever.

 

Whether big or small, God cares about your dreams. His unending love and amazing grace doesn’t always make it easy. But He makes it possible, because His compassion and mercies are new – every single morning. We don’t always feel it but His presence is what we need when dreams are broken. Where else would we turn? Will our emotions and logic console us?

 

Sometimes dreams are lost for a season, sometimes for this present life. But the very strong foundation on which our faith is built tells us to hold on to hope, to let it be a secure anchor in the most tumultuous of storms. It’s a place where everything else is weighed on the scale and measured against the value of knowing Jesus and being able to come to Him only by grace, while we wait.

 

Perhaps in that place of waiting out your present storm, you might find you are meant to be part of someone else’s dream, an answer to their prayer, an encouragement to the hurting, a ray of hope to those who have lost their light.

 

If it seems your dream box is shattered, if what you’ve built your life upon comes crashing down, come to Jesus. Come, just as you are. Don’t wait to get patched up. Just come. Honor His name in the storm. And if you can’t do that, come anyway. In the darkness of the night, hold on to your hope. Resurrection morning is coming soon.

 

 

Break the cycle

 

Amongst other things, GVHD negatively affects the GI tract leading to system distress and loss of appetite. Loss of appetite leads to lack of nutrition and weight loss and fatigue and eventually Failure To Thrive…which leads to lack of exercise which further perpetuates fatigue.

 

It’s a vicious circle. The answer seems simple. Eat more. Eat better. Exercise. Or the doctor’s answer: steroids (and mania, induced diabetes, and sleeplessness). In the end, it is a combination of the will of the mind and the will of the body and spirit. In any case, you have to find a way to break the cycle.

 

What vicious circles do you experience? Feeling depressed about body image (or any other host of things) often leads to compensation eating (overeating and eating poorly) which in turn amplifies feelings of negative self-worth and depression. Pain causes stress, anxiety, and worry which further exacerbate pain. Wrong behavior leads to guilt which should lead to repentance and forgiveness and renewal. But sometimes we let guilt lead us to despair and more wrong behavior, thinking what’s the point?

 

But there is a point; an important one. The cycle must be broken. And it can be. People enter rehab to break the cycle of substance addiction and abuse. Others make a determined choice to break the cycle of divorce, abuse, shame, or other destructive practices. Doctors sometimes put patients into an induced medical coma to break the cycle of injury and pain to allow the body to begin a work of restoration.

 

Our lives look like the repeated story in the Old Testament. We turn to the world and forget God for a while. We turn away from God and find trouble. God brings us to repentance and we find restoration…until we turn to the world and forget God again. Over and over the cycle continues.

 

The first step to breaking any negative cycle is to recognize it for what it is. But like the frog in the pot of water we don’t always recognize the dilemma we’re in. We need to ask God’s perspective to show us where we are. (Search my heart O Lord.)

 

A second step is bringing our thoughts and behaviors to God’s courtroom. This may include negative behaviors we use to compensate for our hurts such as blaming others, being cynical or sarcastic, passive-aggressiveness, shying away from conflict, blaming ourselves for others behavior. The list goes on to include worry, false guilt, anxiety, self-condemnation, isolation, and neglecting the Word of God.

 

Having submitted our thoughts and behaviors to God, our third step to breaking the cycle is turning our focus to where He is at work in our lives: seeing our tasks and people around us through His eyes. God’s on others on our path takes us away from self and away from negativity that deludes us and steals our joy.

 

Breaking a downward cycle is never easy. There.are.no.simple.platitudes.to.wish.it.away.
Sometimes you need help from others who will be honest with you and tell you what you think you don’t want to hear. In the end (and in the beginning!) we need God to rescue us. Turning to Him is always the right step.

 

 

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!

 

 

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.

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

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.

Do these steroids make me look fat?

The new meds have completely reversed my lack of appetite and removed my Failure To Thrive diagnosis caused by the GVHD. And I’m glad to have gained back ten pounds already, with only another 10-15 needed to return to my ideal weight. Additionally, this past week I set a new post-transplant endurance record by hiking a mountain nature trail in La Crosse over two miles and up an elevation climb of 640 feet! (Followed by a nap!) And another mile hike up and down 190 steps at Iowa’s Pike’s Peak State Park. (Thanks God!)

But I’m not referencing the weight gain or endurance with the ‘fat’ comment. I’m talking about being responsive to God’s call on our life and about discovering his very best for us when we walk through difficult paths. In this case, “FAT” means being:
Faithful
Available
Teachable

In order to prosper from God’s protection and provision for us we need to be faithful to live within the agreement of his love covenant with us. We can’t maintain faith in two masters and expect to receive blessing from both.

In order to experience his plan for us, we need to be available. Imagine saying to someone you love, “I will always be there for you,” but never making yourself available to them. Your words convey one thing and your actions another. We are known by our actions.

In order to gain understanding and wisdom, and to grow in his plan, we need to be teachable. We cannot say, “Teach me your ways,” and then refuse to listen or obey the master’s counsel.

With regard to our physical body, let’s be good stewards and be lean. With regard to our spiritual being, let’s be FAT: faithful, available, and teachable. Being “FAT” is essential to loving God, growing in his truth and grace, and serving others. Eat fully of the Lord’s provision.

“Taste and see that the Lord is good; blessed is the one who takes refuge in him.” Psalm 34:8

Medical update

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."