from an article originally posted October 11, 2014…
I spent a lot of last week dreading Friday. When someone would ask me about radiation, I would get a hard knot in my stomach. The previous week as I was speaking, I broke down asking for prayer for the time I would be pinned down in a mask as the stink eye attempted to rid my brain of cancer.
I had entered this room before. I knew what to expect. But this time, the spots were bigger and we were dealing with two places, not one. My first introduction to this machine I had 89 shots of directed radiation, but this time I would be facing nearly 200. And to say this week has been overwhelming would be a gross understatement.
When I arrived for my treatment, the office was buzzing. My letter had been read, heard by these kind workers. I was ushered to the room with my neurosurgeon as well as my radiologist. We spoke of what was happening, our heartbreak. I told the doctors about my letter and they simply joined the conversation. My neurosurgeon had contacted the news agencies. He sat arm and arm with me, committed to my living and my dying in comfort.
Then I was gently ushered to the team that would place me on the machine. Tony took charge, and with great care placed me in the proper position—but not before placing my phone on a loud speaker where I could hear the songs I had chosen for my treatments. We placed my phone, turned on my brain radiation playlist, then Tony pinned my head to the table with great care. He had even cut out the eyes so I wouldn’t feel so confined. He had carefully placed tape over the sharp edges so my face would not be rubbed in any way that was uncomfortable. His intentional care met me; it mattered. His job is important. Then I was left alone in the room with my songs blaring. The kind voice of Tony came over the speaker telling me were getting started just as young Michael came on the speaker singing Beat It. I almost giggled. But I knew my job was to remain still. The cyber knife hits my tumor within a tenth of a centimeter and my motion would halt its important work. I did tap my toe. Here is my brain radiation playlist friends.
I tell you friends, music matters. All week I dreaded entering this room. I simply felt sick over it. But I was met by such kindness from the staff, such care. Then these songs—they simply made the unbearable bearable. Peace was so present. Your prayers met me. Your love and tenderness in prayer met me in what felt impossible. Peace. Peace I never expected. I thought I would scream mercy, I need a break. But I was peaceful for each treatment. I sat peaceful fighting the temptation to sing along with The Beatles, Gungor, Ellie, Rend, Bright Eyes. With each song, I thought of someone to pray for and quietly prayed. Most of my loves will look at a song and know which reminds me of them. Music is such a beautiful gift. The time was spent watching the stink eye surround my head from every angle shooting healing beams, and my silent prayers were heard in that place.
Your care met me. Your prayers mattered. Thank you. I never expected to be walking through what I’m walking through, but I’m not alone. There are a cloud of witnesses looking at me, my heart, this story I’ve been asked to receive. Your love shows up. It meets me in the lonely room where this fight has landed me.
Next week is chemo week. I’m just beginning to feel normal, and I’m about to be knocked down again. But I know you will pray for me. I met with my oncologist last week, and for the first time in months, my tumor markers are moving down. Praise be. They had been climbing and climbing—that is why he called in the big guns of chemo. My numbers are still high, but we high-fived over the numbers coming down. Every little thing is a victory.
You see, in this battle, in this hard battle, I’m partnering with my doctors. It’s an important partnership. So important. Together we lock arms, fight, and one day we will partner in my gentle goodbye. They will comfort me. Walk with me. I have a friend who is a passionate palliative care doctor nearby. He will help us find the right people to walk me toward my last breath. But what they will not do—what they have committed to with the Hippocratic oath—is to hasten my death. And in that commitment, there is much trust. Much.
People are so angry about my letter, unbelievably angry. But very few are unwilling to look at the trust I enjoy with my kind-hearted and committed doctor’s care. Suicide will always be with us. But doctors prescribing it? Well, people don’t want to look honestly about how that will deteriorate the medical community. They simply want to be angry at me for kindly asking Brittany not to take her life. There is a reason 45 states do not allow for assisted suicide. But from the place of healthy people can proclaim that I’m an unkind religious nut. But one day, one day they will want a community committed to their living. I long for these people so bent on calling me names to go to their doctors and have an honest conversation. A gentle conversation.
This is an important conversation, very important. Yesterday, I found someone so angry about my letter, especially people using my letter to express their hearts. I found him on Facebook and asked him to have a kind conversation with me. He agreed and we entered into a kind conversation about my letter. We gently debated. We challenged the presuppositions we both carried in our debate. We spoke in kind tones, and guess what? We became friends. I long for that to be how this conversation moves forward. I long for us to speak in kindness and gently disagree with one another. I do not expect everyone to agree with me—that would be arrogant and prideful to expect. But I do challenge everyone that enters this place to meet one another with kindness. Until this letter conversation, this blog has been a safe place of support of our story. This entire firestorm has invited in people who care little about my journey. But as I entered this conversation, I invited them. So let’s also warmly welcome those that disagree with us.
And I’m here, I’m up for this conversation. I will continue to share the story that brokenness and suffering are not a mistake. My book is a picture of that journey. It’s the story that death and brokenness are meant to be walked with—not avoided.
As a community, we grow in depth and richness as we gently care for the least of these. Death is not simple, not easy, not comfortable, but it matters. Last night I could not join my friends for a birthday dinner of my dear Shellie—as I was anxious about a seizure in public. So guess what? They came and got in bed with me. All of them came and brought me laughter. Their meeting me here mattered. One day they will come snuggle in my bed to a much depleted Kara. They will rub my feet. They will cry prayerful and ugly tears over me. They will quietly and painfully usher me into my next life; and that story, that hard story, will become a beautiful part of their story.
It takes humble courage to look at a hard story and fight to find the beauty.
Are you struggling to find your kind and gentle voice as this debate rages and moves from directions we never expected? How can you enter this important conversation with love today? Pray for me as I continue to share my heart in this hard edge of living.
I love you Shellie—Happy birthday, dear heart. It was a great good day the day you crossed my path. Your love is stunning, your life amazing, your story important. You are a gift. A beautiful gift.