Thursday, August 30, 2018

Being a Patient Patient is Trying my Patience

“I can’t help but remember and am depressed. I call this to mind—therefore I will wait. Certainly the faithful love of the Lord hasn’t ended; certainly God’s compassion isn’t through! They are renewed every morning. Great is your faithfulness.” Lamentations 3:21-23

Dealing with a long-term illness is a lot about waiting. Waiting for scans. Waiting in waiting rooms. Waiting on results. It is a never-ending cycle of waiting. Usually I’m pretty good at this waiting game. I’ve become better over the last five years, especially since I wasn’t expected to last this long with my original prognosis. Now I’m waiting again.

If we have spoken in the last two weeks I may have seemed distracted. I am having serious focus issues. I am distracted even more than normal because two weeks ago I found out that the treatment I’ve been waiting for, PRRT (info in links below), is finally available at the Duke Cancer Center. This highly targeted therapy has been standard practice in Europe and Australia for years, and in January it finally received FDA approval. It has taken since January for it to go through the process of getting approved as a treatment that will be covered by insurance. Now, eight months later, it is finally becoming an option, eventually.

On August 16, 2018 when I had my end of summer scans and oncologist appointment, my doctor let me know that I could start the process to receive PRRT this fall. The first step is a highly specialized scan (oh the joys of having a rare disease) that is currently only available in North Carolina at UNC (it seems Duke had to send their machine back to Germany for repairs??). Since these two research hospitals work together well, it shouldn’t be a problem to get insurance approval and have UNC call me to schedule the scan. That was two weeks ago, or fourteen days, or 336 hours, or 20,160 minutes, but whose counting?

The treatment is a rather aggressive infusion radiation therapy that will require ten to fourteen days of contact isolation after every treatment, and I may receive three to five treatments. Because of the contact isolation issue, I have been reluctant to make any plans for the fall. I have turned down several speaking requests since, if it happens on one of the weeks I’m radioactive, I don’t want to expose an entire congregation to my personal microwaves. I also don’t know how I’m going to react to the treatment. Some of my “cancer friends” who have had it bounced back really quickly, others had some serious fatigue. “Therefore I wait…”

The people of God should be experts at waiting by now. From their time in Egypt waiting for a deliverer, to their time in the wilderness, and even now as we wait on Christ’s return we wait. This time of waiting has taught me a few things. First, waiting is an active vocation, not a passive one. Secondly, waiting doesn’t mean God isn’t working. Lastly, waiting clarifies and intensifies my motivations.

Waiting is active. When I read the Isaiah 40 passage, “Those that wait upon the Lord…” recently I began to realize that waiting could be an active verb. It is more like waiting tables in a bustling diner than sitting around twiddling our thumbs hoping for the best to happen. While we might not be able to do what we want to do, we can do something while we wait to do what is next. The world doesn’t stop while we wait, and neither should we!

Waiting doesn’t mean God isn’t working. It is so easy to allow waiting to devolve into worrying. Even in my case, I know (because I’m regularly annoying them) that my doctor and her PA are nudging the process forward as fast as they can. While they can’t control the billing department or make Blue Cross Blue Shield work any faster (I’m not sure anyone can), they are advocating on my behalf. I also believe that God is working on me, preparing me for what comes next.

Lastly, waiting clarifies and intensifies my motivations. We have all said, “absence makes the heart grow fonder.” This is a similar idea. This waiting has caused me to seriously begin to reflect on how I will order my life if this procedure is effective and it adds another decade or more to my life expectancy. I’ve been living the past years trusting in God and also uncertain of how much time I had left. This could open the door to a significantly better prognosis. What is God calling me to for the new and improved “long-term?” What new rhythms do I want to reintroduce into my life? How can I gather in intentional community more regularly? All of these thoughts have been part of my prayer and thought life for the first time in five years. I have a renewed since of what is possible!

Meanwhile I’m still waiting. I appreciate your prayers. Please pray that I will continue to actively wait, that I will trust that God is still working, and that God will continue to help me get clarity and intensity about the next chapter God is calling me into. I will keep you posted, I guess you’ll just have to wait and see with me.

Brief video explaining the basics of PRRT

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