Whack

I'm at St Mary's for an MRI. I have two thoughts in my head this morning:  

1) The Napkin Note post will be late today. I'm sorry. I did write it, but had to get here early and didn't have time to post.  

2) Why is it that I don't know how much my MRI will cost until after I get the bill?!? Is there any other good or service that Americans purchase without having a concrete idea of the cost? 

First Day of 10th Grade

Napkin Note: 

Dear Emma, 
I am so proud of the young woman you have become! You're smart, compassionate, witty, and athletic. Good luck, sophomore! You've got this!! 

Love, Dad 

Pack. Write. Connect. 

"Hands Free Life" Book Review

I was honored to be asked to review a copy of "Hands Free Life" by Rachel Macy Stafford (Hands Free Mama) earlier this year.

It took one day. I only could allow one day to read "Hands Free Life: Nine Habits for Overcoming Distraction, Living Better, and Loving More". I was busy being a dad, a husband, and cancer patient. I knew I was distracted, but there was a purpose. I was on a mission and I acknowledged my limited time left. As I settled in to read Rachel's words, my heart stayed in my throat the entire journey. She gets it. She knows we're distracted and it's not just the amount of screens we have in our lives. It's our incredibly complex, crazy, and somewhat out of control lives.  

Rachel Macy Stafford will help you reconnect and build strong relationships. Even if you make a moderate amount of effort, your family will thank you for strengthening your relationships! Once again, I owe Rachel a big "Thank You" for bringing relationships and family to the forefront of everyone's minds.

The book is coming out next month. Pre-order a copy today!

Amazon: goo.gl/VzD6xZ
Barnes & Noble: goo.gl/KBavt4
Indie Bookstores: goo.gl/qwd7X7

Which Doctors

I've started my fifteenth month of treatment. I'd have to say at this point it's not really treatment anymore. It's prevention. What we see isn't getting any smaller. It's not growing or spreading. It's stable.

The question remains, "Am I going to be healed, or is this as good as it gets?" Am I just waiting for inevitable spread which would eventually harm me beyond repair?

There are a handful of viable treatments I could try. There are even some things that aren't quite yet approved, but worth getting my hands on.

My course really depends on which doctor I want to believe. In which doctor do I put my trust?

One doctor had a frank conversation with me just a few months ago. He stated that the median lifespan of someone in my condition is about 12 months. We could give ourselves a +4 since we're using Votrient, my current treatment. So, 16 months. My metastatic diagnosis started in Feb 2014, if we're using the best case scenario dates. This doctor didn't even want to talk about a 3-year lifespan until we were able to effectively deal with the cancer we could see. He also gave me a 100% chance of having kidney cancer cells floating around my body. A dangerous situation.

One doctor thinks I am doing well. If he didn't know I had cancer in my medical history, he might overlook the lesions on my MRI. He thinks I should consider lowering my Votrient dosage to increase my quality of life. I might even want to consider reducing my dosage to zero.

Most of my doctors won't consider a different treatment path until we see growth or spread. I should keep taking the Votrient until it stops working. (And it will stop working.) Once we see material growth or spread, we can consider an alternative.

Waiting seems incredible passive to me.

I also know that each day with Votrient is generally not a fun day. I can tolerate the meds some days. No days are "great" and most days are below average. Some are utterly awful. I really don't know how much longer I have it in me to keep taking this drug. I also think it's keeping the cancer from growing and spreading, but that's it.

A friend shared his thoughts on this with me last week. "Stable is dying." I immediately knew what he meant. I am driving down a road. I have no brakes. There is a cliff in the distance. But I am stable. Everything is ok today.

Stable means dying.

Here's what I plan on doing:

Genomics - I am having my cancer's genome sequenced. There's a small chance we could see something that would help direct my best path for treatment.

PD-1 or PDL-1 - "Programmed cell death protein 1"  Now that's the way to label a treatment! This treatment is mostly in late-stage trials, but a few were approved for use in the U.S. in the last 6 months. I just need to find a doctor that will get me in the program. We'd need to see if I can take both treatments concurrently.

Vaccine - The University of New Mexico currently has a Phase 3 trial testing a personalized vaccine for metastatic kidney cancer.

Wow. That's some cool stuff.

Which Doctor?

I guess whichever one wants to sign up to treat me. Any takers? Call me.

Health Update

It's time for a quick health update. 

I had an MRI last Sunday and met with my oncologist on Thursday. 

There's no material change. We still see the same lesions on my liver that we've seen for a year. There's been no change since June 2014. 

We will check back again in about 8 weeks. 

We're discussing a lot of options and alternatives. The meds have been hitting me pretty hard lately. I'm tired. We need to fix that. 

I need to get back to the softball game. Have a great night!