Faith, Support, Attitude, and Prayer

Since my last post, my amyloidosis treatment options have expanded. Funny thing about having choices you didn’t have just months ago. Sometimes the will and desire to take action wanes. What you previously wanted loses its attraction. Sort of like giving your child permission to graduate a year early. Now they don’t want to. Or, your child turns 16 and you offer to take them to DMV to get their driver’s license. Now they’re not sure they are ready to get it and take on the responsibility that goes with the privilege.    

I’ve experienced this recently. I’m currently in remission. I’m off my current chemo cocktail because there’s a limit to how much my body can tolerate. I need a new treatment option.

One “treatment option” would be to do nothing. Another option would be to implement a new chemo cocktail as a maintenance strategy. A third option would be to pursue a stem cell transplant, now available to me.

A second issue is timing. That is, when to implement the new strategy. Start it now? Wait, and let my organs heal a little more since they aren’t being attacked by the amyloids?

One member of an amyloidosis Facebook group I’m part of suggested there is no “perfect” time for this kind of decision. Some opportunities that present themselves today may not present themselves tomorrow. What she said reminded me of my days of surfing. Waves come in sets, and when they come in, you have to make a decision, sometimes a “blind” one. Take off on what you can see or wait for the wave to pass in hopes there will be a better one behind it. Maybe there will be, and maybe there won’t. But, you have to make a decision.

I know many of you, like me, face circumstances you never dreamed of.  It may not be simply a health issue you’re facing. Health issues often morph into financial and lifestyle changes no one could have planned for. It could be a mental health challenge. It might be a relationship that has soured, a relationship that you had great hopes and expectations for.

Four things are helping me during this period of uncertainty:

• The faithfulness of my heavenly father: First, I keep coming back to Proverbs 3:5-6,

               Trust in the Lord with all your heart, and do not lean on your own understanding.

               In all your ways acknowledge him, and he will make straight your paths.

                This echoes the first commandment.

• The support of my wife: Jenny has walked through everything with me- doctor visits, biopsies, labs, tests, medication management, and communications with my doctors. It’s been non-stop since my diagnosis last September. There isn’t anyone I’d rather go through this with than her.

• Attitude and perspective: A member of my amyloidosis group put it succinctly. She said things changed for her when she stopped asking, “Why me, Lord,” and simply asked, “What’s next.” She affirmed Jesus’s promise never to leave or forsake us. Another member said, “You don’t get the life back you once had, but that doesn’t prevent you from having and living a good life.” These aren’t trite sayings; they were written by people who have been through some unthinkable circumstance.
• The prayers, encouragement, and involvement by you, my readers:

So Joshua did as Moses told him, and fought with Amalek, while Moses, Aaron, and Hur went up to the top of the hill. Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. But Moses’ hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun.

Exodus 17:10-12

God works through people. In this sense, you are my Aaron and Hur. Amyloidosis is too big for me to fight alone. I grow weary, discouraged, and feel physically spent. Your prayer support enables me to move forward.

More specifics to come.

In Christ,

Curt