Tag Archives: leukemia induced blood clot

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.

Perfect Timing

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Have you ever been convinced that a certain circumstance was a problem, only to discover that it happened in perfect timing to achieve a greater purpose…maybe even to save your life?

I recently bought a stair stepper – cross trainer at a garage sale. Perfect timing: the person selling it was one who went on one of our post-Katrina missions to New Orleans. This (not) ‘chance’ meeting revealed that she too has Leukemia and provided opportunity to share about God’s goodness in the midst of trials we all face.

On the ‘heels’ of my recent hiking progress, I started using the cross trainer last week, being cautious to not extend the cardiac part of the workout as doctors advise my body is not yet ready for that. I completed only 50 ‘steps’ the first day, 75 the next, and 100 on day three. On Saturday, day four, my legs completely locked up in severe pain, severely limiting my walking. I nursed the muscles for two days before going to the medical clinic on Monday.

I was supposed to see an ARNP on Monday, but she asked if I’d like to see the new doctor instead. Agreeing to this, I told Dr. Hamid how I was sure I had strained my muscles on the cross trainer. I was wrong (again). He immediately suspected the exercise had nothing to do with the pain. He ran a D-Dimmers test for DVT (blood clot), and then sent me immediately to Mercy Hospital ER, where an ultrasound confirmed the presence of a dangerous blood clot. Two other doctors confirmed that it was almost certain that the blood clot was caused directly by the Leukemia itself and that it was essential that I got treatment immediately (blood thinner injections twice daily for a number of months). Perfect timing: while there wasn’t a room available on 8 South oncology, I was finally admitted at 3:00 a.m. to 8 North, where Marcia and I had walked four times daily to encourage the staff when I was at Mercy for two months last winter. During today’s short twelve-hour admission we were able to reconnect with several staff with whom we had formed relationships on both units, and testify to God’s goodness through trial. . . All because of the perfect timing of pain. (And it did our souls good to see their smiling faces again!)

Back home already, Marcia and I reflect on how many times God uses one seemingly untimely and unwanted circumstance to achieve a greater good for us, for others, and for his kingdom. . . and how he accomplishes this in his perfect timing.

I wonder, what pain or sorrow is God using today to achieve his greater purpose in your life and in others, according to his perfect timing?

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28