What Happened this Week & Prayer in Three Words

On Tuesday I was up at OHSU for two scheduled tests: an eco-cardio gram and an EKG. The bone marrow biopsy was denied by my insurance carrier. I was required to have it done “in network.”

After checking in at the cardiology office, I sat in a very small waiting room along with two or three other people. A very large TV filled the wall across from where I was sitting. The History channel was on with the volume low. Some kind of war re-enactment was taking place with warriors throwing hatches, spears and swinging metal balls with spikes. It took my mind off being there. I found it both bizarre and strangely funny at the same time. At any moment I expected to see Monty Python appear on the screen.

After a short wait, I was called in for my EKG. The result of my exam was then made available to me immediately. I looked at the readout and it said, “Abnormal.”

I felt physically sick.

I felt even worse when I was told a few hours later that this report indicated amyloids were attacking my heart.

“Damned amyloids,” I thought to myself.

I was distraught and voiced my questions to the person going over the results with me.

“How long did I have to live?”

“What if I choose a no-treatment option?”

“What if I choose the main treatment option presented, ‘chemo along with other drugs?’”

“Can amyloid deposits be slowed down?”

“Is there a chance of remission in light of this?”

I couldn’t believe I was having this conversation, and that this conversation was about me. I felt deep despair. Jenny, on the other hand, wasn’t buying this conclusion based simply on the EKG, and not on a biopsy or more precise scan. She challenged the conclusion and was, and continues to be, my advocate and strength. I love her so much.

Later in the afternoon, I had a phone conversation with the doctor who originally identified the problem with my kidneys. We explained what we were told, and he responded with, “Not so fast. There’s not enough evidence to support this conclusion.” I felt better hearing that, but I was still shaken by its likelihood.

My bone-marrow biopsy was rescheduled and took place “in network” on Thursday. The doctor who would be doing the procedure went over all the steps with me. And the funny thing, I learned during our conversation that he had completed a month’s worth of snowboarding lessons at Meadows this last season, possibly at the same time I was instructing, but was just in a different group lesson. I know, this had nothing to do with the procedure he would perform, but the conversation made me feel better. I did take him up on his offer of a little Ativan to take the edge off. Everything went well. Thank you for your prayers.

Friday I was scheduled for an ultra sound of my liver and abdominal area, but blew it by eating beforehand. I’ll be up at Emmanuel Hospital later this morning to complete this next scan. The final (for now) scan will be a heart MRI.

So what’s next?

I have two Naturopaths I work with. Once is local, the other is in Florida. Both survived stage 4 cancer using both conventional and complementary approaches. Both have been cancer free for 5 to 6 years. The one in Florida urged me to get a second and third opinion. From his experience, and now mine too, there is a strong push by some health professionals to do something right now, immediately, or dire consequences will ensue. I get that, and if I could be on a plane to Mayo tomorrow, I’d be on it.

First though, we have to have all the scans and biopsies assembled and ready for review prior to an out-of- state consultation. Please pray it comes together quickly so any recommended treatment plans will be based on accurate data and not conjecture. I hope to travel to Rochester, Minnesota the week of October 8.

Second, we’re experiencing setbacks from both Medicare and my other insurance carrier which I won’t name. Essentially, I’m being denied treatment by qualified experts because the experts who understand and treat Amyloidosis are “out of network.”  What complicates this is because I’m still working, Medicare is considered my secondary insurance. It only provides coverage after my other insurance carrier pays their part. If they won’t pay their part, Medicare won’t pay their part. Please pray this can be resolved and resolved quickly. I’ve filed a formal complaint and appeal.

I remember an interview Steve Brown did years ago with Anne Lamott on Key Life. Anne’s a little trippy, I know. Her language is at times is earthy and crass. But, she said something that has stuck with me over the years, and it’s helping me now.  She said she has three main prayers:

• Help
• Thank you
• Wow!

Help: I am asking God for help, as I know you are too. Mercy and healing in particular. Please continue.

Thank you: I am thanking God for being present with me, not leaving or forsaking me as He has promised. I know He is working in my midst, doing whatever He is doing, even though I don’t necessarily feel it directly. I do feel it through others, through your prayers, through those who are helping me through this ordeal. Thank you.

Wow!: I am truly amazed by the remarkable people God has surrounded us with. They have been staff members and doctors affiliated with OHSU, Northwest Renal Clinic, Good Samaritan Hospital, and even the insurance company which is denying me coverage. Their caring and advocacy for us has gone well beyond any “job description” they may be working within. My thanks and appreciation for what they have done. God is loving and serving me through them!

More soon.

In Christ,

Curt

P.S. Thank you once again for the comments, emails, phone calls, and messages I have received over the past week. I am trying to respond to all comments left on Facebook. For those of you who don’t have Facebook, I have created a page on this website where I will post updates.