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

 

What a dead rat on a grill taught me about caring for people

Since being diagnosed with breast cancer in February David and I have been living in Buffalo, NY. Daughters, grandchildren and a cancer institute two miles from the apartment we rent year around made the decision to settle in for the duration of treatment. Adding to those blessings has been the small urban Buffalo Vineyard Church that we attend.

A debriefing session was held after church today about the Friday evening barbecues that the church hosts in Buffalo’s urban west side during the summer months. This urban church is small in number but its members, mostly younger than 35, have big hearts and active mission to the people in their urban community.

We sat outside after church eating snacks while discussing the usual questions posed during a debrief of a major church initiative:  “What went well, what needs to be improved upon, what lessons did we learn for next year, and how did anyone see God at work?”

I shared my story and Maryanne said, “Dona that can be the title of your next blog post.”  I have taken her up on it because among other things rats can be great ice breakers of which I will explain shortly, but first I will share another time when a rat played an important role in a social setting.

Senegal World Vision trip 2005

Eight of us were eating in a restaurant in a small town near villages we were visiting.  Our church in Juneau Alaska was partnering with World Vision and village elders to bring clean water to an impoverished area serving a couple thousand people.  As we were eating our meal a huge rat darted past the door keeper.  Women screamed, maybe some men, too.  Some folks jumped on chairs and others like me were in denial saying ridiculous things like, “That’s not a rat. It’s too big. It’s probably a gopher.”  The rat was frantically running underneath tables and chairs trying to avoid the door keeper whose powerful legs finally won the day when he soccer- kicked the “gopher” rat across the room, through the door into the dusty dirt road from where he came.  The room erupted with applause, cheers and high fives as we witnessed this great athletic feat by our door man.  We laughed, told our versions, commiserated with the other patrons of the restaurant about their versions. Met new people. It was one of the highlights of the trip.

West Side Buffalo, June 2014

The grills were being prepared as adults from the community were coming and sitting on folding chairs and children were running around waiting for the food to be cooked and offered.  Many folks from the church had their barbecuing tasks to prepare for and others like me were sitting around trying to get to know some people who were coming to this weekly event.  I set my sights on a group of three women who seemed to know each other well as they talked about things in the community of which I knew nothing about.  But being the talker that I am (not even chemo can take that away from me) I ventured into their space and introduced myself and they did likewise.  They asked me if I went to the church that was putting on the barbecue.  I no sooner said yes, then they told me that they had seen a dead rat on one of the five grills that was getting ready to be fired up. In fact, they emphatically told me that the grill had been leaning on the side of the church for two days with the dead rat on it for both days; and someone needed to do something about that grill.  I had the distinct feeling that that someone was meant to be me.  Two reactions came up immediately. The first was laziness.  I didn’t want to do anything about it because I figured a grill heated up to over a 1000 degrees would kill any left-over dead rat-ness. I said as much but they were not impressed and seemed annoyed.  “Someone needs to wash that grill with hot soapy water,” the women said again and again. I knew that someone was meant to be me.  My second reaction was disgust.  I didn’t want to get that close and personal with a grill that had been the resting place for a dead rat for two days. I wanted to shoot back by using my cancer card, “You do it, I’m in cancer treatment and don’t need this”. But I knew that this was not the way to make new friends.

After cleaning the grill with hot soapy water, the women invited me back over to their circle with a, “You did good, girl!”  We all warmed up to each other.  Finding out I had cancer they told me encouraging stories about family members who got cancer and were treated wonderfully at Roswell Cancer Institute before they died ( hmm…..not the most encouraging of outcomes) but I knew for them the question of life or death was not the point  of the experience.  It was that their loved ones and they by virtue of proximity to their loved ones were treated respectfully and lovingly at Roswell Park Cancer Institute. They wanted me to be encouraged by such an important truth: how we are treated by strangers whose job is to care about us is the point.  I was so glad for hot soapy water and the presence of mind to finally show that I cared for what they cared about. This was my story of how God was at work, even through a dead rat.

Galatians 6:9 “Let us not become weary in doing good, for at the proper time we will reap a harvest if we don’t give up.”