Tag Archives: transplant

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

 

 

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”

 

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.