NET Virtues

NET patients need courage, strength, stamina, and enormous patience.

I have walked a number of friends and relatives to the end of their lives. Anyone facing a potentially fatal illness–and especially those fighting cancer–have little choice about being brave. They are in the fight of their lives. They often have to make difficult choices–often from a list of choices that are none of them good. they define “grace under pressure.”

Jane showed me that courage every day. She refused to stop teaching until the day came she realized she no longer could. And she still insisted on going in to clean out her room. She made the trips to Dana-Farber–and would have made them alone once she knew how

to get there if I had not told her I was going with her whether she liked it or not–that I was not letting her face this thing alone.

Absence of Doubt

It was only the day before we went to Boston for her heart operation that she said anything about the possibility she would not survive. Her doctors and nurses never saw a moment of doubt or hesitation the entire time she was there.

Strength and courage are often seen as the same thing. They are not. Despite her doubts about her recovery she began physical therapy in earnest and soon as they would let her. She pushed herself relentlessly in the knowledge that her exercises were the key to her moving out of the ICU and back home.

Stamina is often confused with strength–and sometimes with courage. Stamina is about endurance–about pushing on and moving forward. You can be brave, but without stamina all you can do is wish you could do what needs to be done.

NET requires Patience

For the NET patient in particular, though, patience is a necessary virtue. Honestly, we know so little that for many patients NET is about waiting: waiting for access to a trial, to a new drug, to a new procedure. Your body lets you do less and less. You can’t eat, you can’t sleep, you worry about where the bathroom is and if you will be able to get there before you poop in your pants. Right now, an NET patient lives in a world without hope. No item in the NET pipeline offers anything more than time–no item in the pipeline offers any hope of a cure. You live with the knowledge that the best you can do is slow the disease down–that the best you can do is buy a little more time before the symptoms overwhelm your life.

Jane was a champion when it came to patience. She endured every diminishment. She got angry sometimes–but as I told her more than once when she would ask why I did not yell back at her when she said something she thought was unforgivable, that anger was the disease talking and not her; it was the frustration with the limited options talking, not her. The entity that was Jane endured–and often worried, I think, more about me than she did about herself.

Caregiver’s Lament

I tried to return that favor. Whether I passed that test I leave to others to judge. I am not a fit judge. I see my own failings too clearly. Anything less than her full recovery counts in my mind as failure emotionally. I see the logic that I did what I could do–and that no road exists, even now, to bring that about–but this is a place that logic fails.

Five weeks from tonight I will be just outside Hopkinton. Five weeks from tomorrow I will walk the 26.2 mile course of the Boston Marathon. I will finish if I have to crawl across the finish line. I will be strong, I will exhibit stamina and patience in the hope that we will inspire researchers to continue to seek a cure–and so they will have a little more money to do it with.

I have seen the face of courage. I would spare as many NET patients as I can from having to exhibit it as Jane did.