Tag Archives: AML

From Surviving to Thriving

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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”

 

Shielded

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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.

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.