Guest post from my husband: For Whom the Bell Does Not Toll

Stage 4 cancer patients have another definition for victory

Preamble: I took note of Dona’s post, the Clarity of Ink where she contends that writing forcibly imposes boundaries on thinking and reins in anxious thoughts. So, I began to write about my worries and hopes for my wife who is living so valiantly with Stage 4 cancer. Dona suggested when I was ready I could guest-post on her blog. I’m a bit uncertain making this public. Writing is quite therapeutic, but it is likely only a help to me. Moreover, as I reread this post just before publishing, I realized there is much essential stuff not in it: what it means to trust and pursue God, the necessity of prayer, the hope for miracles, the need for a positive outlook, the understandable disconnection and feeling of helplessness that the lover has for the much loved sufferer. Well, perhaps those are the subject of future posts.

– Dave Eley

The atrium lobby within the Roswell Park Cancer Institute is what all good atriums should be – bright, airy, cavernous (4 stories), full of activity, welcoming – an excellent stab at normalizing the experience of entering an institution with a fearful name. RPCI has the practice of ringing a bell in the atrium each time a patient finishes their treatment regimen. Everyone scuttling through the lobby stops and applauds. The finish of a tough race in the fight against cancer. Victory for a person who has prevailed, with his or her team, over a great challenge.

roswell atruim
Winter concert in the Roswell Park atrium taken while I waited for Dona to finish a CAT scan

By in large, the bell rings for patients that have Stage 1-3 cancers. Dona was Stage 3 in 2014. In the words of Dona’s surgeon, “the horse was still in the barn.” Like others, she enjoyed the huge relief and encouragement that her cancer was quite possibly curable (see Dona’s post, The Bad News Ends Today ). But to survive, she endured a range of harsh treatments. With late-stage non-metastatic cancer, she got the full nine yards: surgery, uncomfortable surgical incision drains, subdermal medication port implant (actually quite a convenience), chemotherapy, hair loss (but she had a half-dozen great wigs), fatigue, infections (one landed her in the ICU), shingles, endless radiation which compromised my health from eating endless donuts while waiting for her in the hospitality suite. Yet, there was always an endpoint; a horizon to labor towards. At some point the bell in the atrium would toll and there would be the ‘victory dance’ of a person who has prevailed, with her team, over a great challenge.

Then there is the group for whom no bell tolls. This is the stage 4 group, or descriptively, people whose cancer has spread to distal organs. The horse is now out of the barn.  We discovered shortly before Christmas 2018 that Dona was now in this group – the ‘new metastatic me’ as she now calls herself.

Although a full array of treatment options can be marshalled to fight the disease, the cancer is not curable.  Simplistically speaking, medically, the treatment is whack-a-mole; like an endless fight against urban insurgency. Battles will be won but these folks must develop a new definition for victory over cancer.

Mission Objectives
Roswell Park’s vision is “to free our world from the fear, pain and loss due to cancer — one act of compassion, one breakthrough discovery, one life-changing therapy at a time — until cancer is gone.”  I love that: big, vivid, energizing, inspiring.  It holistically covers both the process and the objective. But it is the mission and vision of science and human endeavor. It is not complete for the incredible woman who is my wife that is now picking her way through the Stage 4 scree. (See: Nick, the barber, says, “Trust God, then your doctors.


Dona needed a new plan for metastatic cancer
I am a retired military officer. The sailor in me loves well-crafted mission objectives. The man-child in me wants to tamp down anxiety by doing something, ANYTHING.  So, shortly after Dona’s setback we worked together to draw up a plan of 3 parts:

1. Pursue the best possible treatments for the best possible outcomes.

We will stay informed and be our best advocates. But it is a relief that this mission is mostly in the hands of the excellent, caring, encouraging Roswell Park team. There are new therapies today that were not available when Dona was first treated in 2014.  We are grateful.  We are maintaining a positive outlook.

2. Double down on the present. Experience joy where we can find it. 

Ordinary experiences are much more intense now.

Two weeks into a new treatment regimen, Dona developed incredibly painful mouth sores. That, coupled with a low blood cell count and worries about an infection kept her in bed and PJ’s most of the week; working on a blog piece titled, ‘Loneliness.’

Our daughter provided therapy and distraction when she asked me to pick up our two grandsons from school. Dona wanted in. She arrived at school armed with treats. She had purchased two bottles of flavored milk – chocolate and mint green. I told her not to present two different bottles of milk for the kids would argue over one in favor of the other. She said she knew which flavor each preferred. No problem. Once in the car kids began to argue, push and shove over the green milk. I smirked. I love being right. Dona demanded that we immediately return to Wegman’s to exchange the chocolate for another green. Though annoyed, I dutifully pulled into Wegman’s and Dona leaped from the car. The boys and I sat in the car for what seemed like less than a minute before she was back. We were startled at her speed. Each boy now had their own delicious bottle of green mint milk, or what the younger called booger-milk. The older boy, having more academic training, called it, mucous-milk. Much laughter. That was joy for us.
Not always, but sometimes suffering can make the little things, even silliness, seem so much more. At that moment joy was the vivid green of the ‘mucous-milk.’

I love my wife. Strong and courageous, longsuffering without being stoic. Looking for rays from a pale winter sun and finding them.

3. Think deep about eternity.
This, of course, is the endeavor of a lifetime. Much to think about and write here. Tim Keller has the jest it:

“Suffering takes away the loves, joys, and comforts we rely on to give our life meaning. How can we maintain our poise, and even our peace and joy, when that happens? The answer is that we can do that only if we locate our meaning in things that cannot be touched by death.”

Timothy Keller, Walking with God through Pain and Suffering, (Dutton, 2013), p. 36

What then is victory over cancer?

The Apostle Paul writes:

“Then what is written will come true. It says,
“Death has been swallowed up. It has lost the battle.” (Isaiah 25:8)
“Death, where is the victory you thought you had? Death, where is your sting?” (Hosea 13:14)
The sting of death is sin. And the power of sin is the law. But let us give thanks to God! He gives us the victory because of what our Lord Jesus Christ has done.

– I Corinthians 15:54-56

‘Cancer can’t win’ is a frequently used banner for fundraisers. I Googled it. Most of the hits referenced Christian hope in the face of the disease. Many hits reproduced a poem written in the 1970’s by Robert Lynn for a friend. This poem was passed around pre-internet hand-to-hand as the words of an anonymous author and was eventually posted on line by people wanting to comfort friends and family. In the mid-2000’s, Lynn discovered his work had garnered over 160 million hits. It was time for a copyright!

CANCER IS SO LIMITED

Robert L. Lynn

Can cancer conquer you? I doubt it, for the strengths I see in you have nothing to do with cells and blood and muscle.

For cancer is so limited—

It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.
It cannot cancel Resurrection.

Can cancer conquer you? I doubt it, for the strengths I see in you have nothing to do with cells and blood and muscle.

© 2007 by Robert L. Lynn
Permission to publish the poem has been requested

 

The Clarity of Ink

 


I’m on an unruly horse on a journey; an earthly journey that only God knows where we are headed. Only God knows and my blog posts will be my attempt to be ok with that.


penI have not written a blog post since the summer of 2015. Apparently, the absence of cancer in the following years anesthetized deep thinking. That was fine by me. I like to write but what I really like to do is talk and anybody who has met me can attest within 5 minutes that I like to talk and I can do so in a variety of formats: teaching, storytelling (my favorite), presenting sermons, sale pitches, chitchatting , joking, and just generally yucking it up. I’m an extrovert, obviously, so talking is not just fun; it’s a blood transfusion that keeps me feeling alive, energetic and vibrant.

However, it is discipline I need when a curve ball of life is thrown at me (is that the right sports metaphor? I don’t play basketball.) I need boot camp training to keep me focused on my values, to my higher nature, and to the best of what makes me a thoughtful human. Talking is necessary as the means of vital human connection but talking is not a discipline; not for me anyway. Writing is the spiritual discipline that keeps me grounded. And it has good science to back its claims to stress reduction and trauma healing. Several theories attempt to explain this. I prefer the one that describes the process of writing as forcibly imposing boundaries on thinking – boundaries of grammar, syntax and sentence construction. Grammar, and not even necessarily correct grammar,writing forcibly imposes boundaries on thinking reins in free-floating anxious thoughts that tend to run off into numberless rabbit trails causing untold feelings of misery, fear and confusion.

I’ve been counseled by family and friends to pick up the computer again to begin a phase 2 of this cancer journey (Stage 4, metastasis). For several reasons, I have been reluctant to write. Laziness stands out as the most obvious. It takes time and mental work to write even if it turns out to be therapeutic. Replacing tissues with word documents feels a bit cold and a betrayal to the tragedy and intimacy of suffering. Going public with written reflections can also feel egocentric or worse, a kind of romantic display of “look at me, a suffering cancer victim with big poignant thoughts.” Another reason to avoid the blog world is the fear that I will write something now in the early stage of metastatic cancer that will seem sentimental or naïve considering the later stages of this disease. But despite self-doubt and laziness I’m doing it. I hope some of you who read my blog posts a few years ago will join me as I try to make sense of the ‘new normal’ of living with metastatic cancer. By the way, some of my blog posts will be reworkings of earlier ones as they seem upon re-reading them to have held on to their relevancy. (See ‘Fear of Dying from March 15, 2014.) Also, I will invite guests to submit an article from time to time.

So, here am I on this unruly horse going on our journey; an earthly journey that only God knows where we are headed. And when I say, “only God knows,” I mean it literally and respectfully. Only God knows and this blog will be my attempt to be ok with that.