Chemo, Grandchildren, and Hope

This is the first of a series of posts I’ll be writing as I reflect on my journey with AL Amyloidosis. As I’ve written previously, there is no cure, and life expectancy ranges from months to a few years. However, there are exceptions, and I hope I’m one of them. Writing my thoughts down is a help to me personally as I try to process and come to terms with what’s going on. Maybe sharing them publicly will be a source of encouragement to those who are going through deep waters themselves. What I write shouldn’t be taken as any kind of example to follow. It’s simply my story.

In this post I’ve arranged what I have to say topically. It’s a little long so you may want to skip to what interests you.

Grandchildren

I took Keller and Scarlett to the park last week. We’ve got several parks to choose from. Keller, age six, told his mom (my daughter Natalie) that he thinks that “Grandpa will decide to ‘go local.’”

Natalie asked him, “Do know what ‘local’ means?”

He said, “No, but that’s what Grandpa will probably say.”

Sure enough, I told Natalie when I picked up the kiddos that we’d probably go somewhere “local.” Keller overheard what I said, smiled, and began to laugh.

“See!”

While at the park, Scarlett was playing tag with some children she just met. Sitting on a bench, I was the designated “free zone.” I loved it, her running toward me to avoid being tagged and jumping into my arms.

On our way home from the park we passed a cemetery.  Keller asked me why cemeteries are outside and not inside. I told him that cemeteries used to be found right next to churches. I said that someday those who have died will be resurrected, just like Jesus. I wanted to be careful not to say too much, but then he remembered he hears the Apostles Creed each week, and the phrase, “the resurrection of the body.”

Death is not a natural event, not a good thing, not to be thought of as simply part of the “circle of life”. 

Chemo Doctor

Jenny and I met with a chemo doctor this week. He’s actually worked with 20 Amyloidosis patients when he interned at Mayo. We spent just under two hours discussing my condition, treatment options, and complimentary (nutritional, non-western) approaches. He actually provided me with the names of two naturopathic physicians in Oregon who specialize in cancer treatments. Interestingly, the doctor I’ll be seeing at Mayo next week is a former colleague of his. They’re on a first name basis and will be collaborating on recommendations for a treatment plan. Is this a “God thing,” orchestrating and directing my steps? I’d like to think so, but actually who really knows? I think all I can say is that while Jenny and I feel to a large degree out of control, we know that God is. We’re just leaving it at that, knowing He loves and cares for us.

Having said that though, I would love it if before starting chemo (if that’s what I choose to do), future blood tests would indicate positive changes, reversal of damage to my organs, etc., that would save me from going through this form of treatment.

Getting My House in Order

I met with our family attorney to review my will and a term insurance policy I have. Everything was in order. As a suggestion, I’d recommend all husbands take out a policy (term, not whole life). It’s cheap until you reach age 65. Then the premiums go up dramatically. But until then, you’ll be providing your wife with peace of mind.

The Cart Before the Horse

Remember the story in Matthew 9 where the paralytic is brought to Jesus for healing? Jesus deals first with the man’s eternal standing with God. He forgives his sins. Only after this does he provide physical healing. A couple of thoughts. First, many speakers on God TV Programs and many radio personalities have the order wrong. For them it’s all about healing, financial prosperity, and the “good life” lifestyle. But having criticized that, I want to say that Jesus is interested in healing. It’s just not the priority.

Think about all the different healings he performed during the three years of his ministry. That brings me hope. Please keep praying.

Like I wrote earlier, death is not natural. Jesus regularly raised people from the dead. Something I think about.

Glad for Google Calendar

I now have 7 doctors I’m seeing. I’ll be adding an 8^th when we go to Mayo next week. I’d be lost without this tool- keeping track of doctor appointments, one to two blood draws a week, biopsies, etc. This week I have three doctor appointments alone. Google calendar has been essential in helping me stay organized and on schedule.

More Time With my Wife

In the past, Jenny and I might go out to dinner a couple of times a month. Now it’s a regular thing, usually right after a doctor’s appointment so we can decompress and talk about what we were just told. Regular places we find ourselves frequenting are Thai food restaurants, Elephants Delicatessen in Portland, Whole Foods Market, New Seasons, and Market of Choice. This has been a silver lining of sorts.

Acupuncture Conversation

Sort of out of the blue my acupuncturist, while putting needles in me, asked if I knew anything about Gnosticism. I did and thought sure, why not discuss it with him I talked about two of the Gnostic gospels I knew about. I also said, “You know, the early church wasn’t exactly enthralled with what they were saying. It was identified as a heresy.” The idea that there is hidden knowledge about God, reserved for only a select few (and those who buy their books or audio content so they too can be on the inside track) has been around forever and is popular today. Made me grateful that the gospel is not like that. It’s broadcast everywhere. I’m glad I heard, believed it, and am resting in it.

Amyloidosis Meeting

A week ago Saturday, I, along with Jenny and my daughter Natalie, attended an Amyloidosis Support Group meeting.  I was greeted at the registration table and said, “Thank you, I’m glad to be here.” But as the words were leaving my mouth, I was conflicted. No, I wasn’t glad to be here, but I was glad for their support.

I was overcome by the warmth and acceptance extended to us by everyone. All of those attending were where I am at one time; just further down the road I’m now traveling. Their experience was similar to mine- having the bad news delivered, working through denial and acceptance accompanied by a lot of misinformation, frustration and fear.

My depth of understanding is growing by being around those who find themselves in a similar experience as me.  My capacity to understand, have insight, didn’t get activated until I possessed the experience myself.

I now have a new meta-narrative that I’m just getting used to.

The question, “Why am I one of the 1 in 100,000 that got this?” wasn’t voiced. Not that each of us hasn’t asked it, or maybe is still asking it. There were no flip answers being passed around, like “God has a reason for what you’re going through (one that He isn’t letting you in on),” or “God is teaching you patience through suffering (like how to die slowly?),” or “God is glorying Himself through what you’re going through (as if God’s ego needs to be reinforced at our expense).”

No, but what was voiced was “Why and how do I want to live my life with the time that remains?” This group’s focus was on living the life they have now, not coping with the certainly of the early death awaiting all of us in attendance. To the people I met, their focus was centered on family: wives, children, and grandchildren. And, for those of us still working, working. Just working less.

The highlight of the day for me came at the end when I was leaving. One of the guys I spoke to, now in partial remission, told me, “You don’t look like you’re going anywhere soon.” I liked that.

My prayer from Psalm 61:

“Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.

In Christ,

Curt