A good friend of mine, Paul Robertson, wrote this. I thought it was so well done, inspiring yet sobering at the same time! I wanted to share it with everyone! Thanks Paul!!!
One TentMaker’s Hike Thru the Confusion and Chaos of Cancer, Section LV
March 11, 2023
I had a three-month check up appointment with Dr. Wang on Monday, March 6. Good report. Also is well. I am so thankful to still be here, as I often say: “I’m doing great. I’m above ground and vertical.” Or, “If I was any better, I’d sprout wings and fly.” Or, “If I was any better, I’d be twins.”
Life has been good. I just finished my second trout fly fishing season on the Guadalupe River. I wrote on Facebook about my last trip and concluded with these words.
So, I ended my Guadalupe River 2022-23 trout season. I am so grateful: to have been able to spend 24 days on the river, to have caught many fish, that I was not hurt, for a supportive wife, to be alive and in reasonably for good health, and for friends with which to share the experiences and have good conversations.
Being in the water fly fishing benefits my mental and spiritual well-being in a number of ways. In the water I feel a sense of awe. I experience a sense of being connected to something greater than myself. I had many experiences of deep feelings of worship as I stood in the river, connected with the Creator.
Being in the water fishing also provides soothing sensory experiences. The sounds, the smells and sight of a moving body of water is relaxing. They help me to stay centered and find a calming, positive state of mind.
Being in the water fishing also facilitates mindfulness and reflection. Water in a flowing river is dynamic. It has different colors. It has different shapes. It has different sounds. It is moving. While standing in the river, my attention is on those things rather than all the noise of the world.
There is something rhythmic about fly fishing. The back and forth rhythmic cadence of casting helps me to take all my troubles and cast them far away, even if just for a little while. The catching of a fish and releasing it reminds me that there can be new beginnings for me as well.
Steve Ramirez said it well:
Fly fishing reminds me to slow down, live now, let go. I cast as I breath.
I retrieve line to the rhythm of my heart beating. And so, I stand in the
river casting back and forth, trying to lose that feeling of being alone. It is then that the rainbow rises and takes my offering. I raise my rod, and all at once, I am no longer alone. I am connected to his powerful runs, facing into the current. Silver line connects us, both fighting to live—two beating hearts. He comes to my net. I hold him gently, rocking him back and forth in the cold rushing water. ‘Gain your strength, dear warrior,’ I say. Am I speaking to him or to myself? With a kick of his tail, he returns to the river—and I go with him.
I am a blessed man.
This poem by Mary Oliver (“When I Am Among the Trees”) captures my feelings when outdoors and on the river.
When I am among the trees,
especially the willows and the honey locust, equally the beech, the oaks and the pines,
they give off such hints of gladness.
I would almost say that they save me, and daily. I am so distant from the hope of myself,
in which I have goodness, and discernment, and never hurry through the world
but walk slowly, and bow often.
Around me the trees stir in their leaves
and call out, “Stay awhile.”
The light flows from their branches.
And they call again, “It’s simple,” they say,
“and you too have come
into the world to do this, to go easy, to be filled with light, and to shine.”
Lilly Pharmaceuticals Journey
As you may recall, I made a film for Lilly Pharmaceuticals last summer. They highlighted my story about my experience with clinical trial. The actual filming took about 12 hours. The film that was produced is 3 minutes, 50 seconds in length and has been used
internally by Lilly. One person told me that around 30,000 people had seen the film. And they continue to get requests for access to the film from those out in the field. In February the CEO of Lilly showed it to their global top management team. Apparently, my story adds a human connection to the pill.
I started this clinical trial in 2019. In January 2023, the FDA approved the drug I have been on for the public. It was given a name to be use for retail sales—Jaypirca.
February 14-15, 2023, Lilly had its annual meeting for the oncology sales team in New Orleans. One focus of the meeting was educating and motivating the team about Jaypirca. As part of that meeting they invited my oncologist, Dr. Wang to speak, as he was the lead investigator for the clinical trial. In addition, they invited Judy and me to come to the meeting and share on the program. The team had seen the film in November and thus they “knew” my story.
As a side note, I learned a few interesting facts on that trip. The drug was first “discovered” in England. The Lilly CEO went over there, was impressed with the initial results shown in the data, and bought the drug. Lilly then did a clinical trial, of which I was one of the first to be enlisted to participate. Currently the drug is manufactured in Ireland; put into pill form in Puerto Rico, and then packaged in Indiana.
Back to the trip to NO. It was a delightful experience. The Lilly team made us feel like family and even “rock stars,” as they referred to us. Before the meeting, I had one Lilly VP recognize me on the street and walk over to introduce himself and thank me for what I did. At the airport as we were leaving, several Lilly sales reps came up to us and again thanked us and shared how important my story was going to be in promoting this drug as a resource for others with Mantle Cell Lymphoma.
Judy and I spoke with the oncology sales team Thursday morning—30 minutes. They gave us a standing ovation when we went on stage and when we finished, as well as multiple ovations throughout. Working with the Lilly team was fun and affirming. It was inspiring to experience their commitment to improving the lives of others. You hear a lot of negative about “big pharmaceuticals.” All can say is that I have experienced the employees I have worked with as very compassionate and focused on helping people.
As part of my experience, I was asked to pick a song that would play when they welcomed us to the stage. I picked “Stand By Me”—the version done by Playing for Change. This version features Grandpa Elliott, a New Orleans street singer, who unfortunately died in 2022. Here is a link to it in case you want to listen to it. I think you will enjoy it. https://youtu.be/Us-TVg40ExM
I used the song as a transition to the theme of my introductory comments—I would not be where I am today but for the help of many others. My comments were followed by an interview with Judy and me. I expressed my gratitude for the many who have “stood by me.” I will not include all that I said (about 10 minutes), but below is an outline with talking points. I had illustrations and examples for each key point.
Diagnosis in 2013 to the present:
- Stage 4: anxiety, fear
- My question was and has been, “Why not Me?” not “Why Me?”
- These are the cards I have been dealt—let’s deal with it —my approach has been shaped by my theology and my experience working in a hospital as a chaplain educator
- Almost 10 year later, the word that sums up my journey is “gratitude”
- I am keenly aware that I would not be here but for the many who “stand by me”—thus the choice of songs. Let me mention a few of those that faithfully have stood by me. My Wife and Family My Friends
My Medical Team
- Dr. Wang and his team
- The much larger medical team that includes those working the background— labs, offices, warehouses, etc. My God
- God has given me hope and assurance, but mostly the strength and grace to move forward. My prayer through this journey has continued to be what I journaled almost 10 years ago (4/17/2013):
- “I will approach this uncharted journey with thanksgiving for each day that God has given me and for each one to come. I pray for grace to accept what is coming; for the ability to be kind with others through it; for strength of mind, body and spirit through the treatment; for peace with God, self, and others in the midst of the journey; and for the ability to face death with openness when the time comes—hopefully 7+ years from now…but who knows.” Thank You
- And all those working behind the scenes.
- Together you have kept me alive to fulfill two early dreams—that Judy and I might grow old together that my grandchildren will remember me. “I am not asking you
to take this wilderness from me, to remove this place of starkness where I come to know
the wildness within me…
But send me
tough angels,
sweet wine,
strong bread:
just enough.” —Jan Richardson
(Excerpt from “Desert Prayer“, In Wisdom’s Path)
My Testimony About Clinical Trials
I entered my first clinical trial as my second treatment plan (2014). This followed a regimen of chemo which had killed much of the cancer, but it had not eradicated it. Since that first trial, I have been in about 6 clinical trials, culminating with this last one which I have been in now for 205 weeks.
A primary motive for getting into the first clinical trial was at some level “survival.” It offered me some hope. Though that trial did not get me to remission (I had a partial response), I later came to see that drug approved by the FDA and it has helped many people
In my experience in these clinical trials, my perspective has widened. I have come to embrace gratitude and privilege for access to the latest research efforts and for being a part of research that will help others after me. I have come to appreciate the sacrifices of others that have been in trials before me, of which I have benefitted.
For you and or those you know that may be considering a clinical trial, let summarize a few of my observations about clinical trials that have emerged from my experience.
- Clinical trials offer access to new, cutting-edge treatment options….and maybe even the cure.
- Clinical trials are highly regulated. Yes, there is risk, but trials are monitored carefully.
- There is a research nurse (and team) that guides you through the process and is there to answer questions and assist in numerous ways.
- It helps me in the decision process to ask my doctor for three options with pros and cons for each. I will be able to stay in my current clinical trial until it no longer works for me. If and when that time comes, I’ll be open to another clinical trial.
Closing Prayers and Blessings
I Need Some Laughter, Lord I have had enough
of sad saints
and sour religion.
I have had enough
of sin spotting
and grace doubting.
I need some laughter, Lord,
the kind you planted in Sarah. But, please may I not have to wait until I am ninety and pregnant.
—Church of Scotland Prayer, Celtic Daily Prayer: Book Two (2015)
For the bewildering mystery of being alive I am grateful!
For this amazing communion of saints that is my body, how it all works—thank you! (Even when it is awkward, or ill: gratitude!)
For this stupendous planet, cornucopia of life,
teeming with beauty and strangeness,
wrapping me in its flow of giving and receiving: thanks!
For the people who have helped shape me,
given me gifts, walked the road with me—
even unknowing, even by accident—gratitude!
For what I can do, and the faith to do it, thank you! For light (so splendid!) and sound (how wonderful!) for how gravity works no matter what (wow!),
for the sense of touch (and humor): thank you! For music in the world and in my heard, gratitude! For all my struggles (for if I am wrestling, I do so with angels)—I am grateful.
For the lives of people I miss, dear ones even now on the threshold of death, gratitude. For the little green frogs in my yard, and the great blue heron who wants to eat them: thank you! For your absolutely consistent grace, your delight in it all, your love beyond imagining, I thank you!
I ask only for the gift of undying gratitude, in all things—welcome or not, pleasant or hard— in all things, in every moment: gratitude.
Thank you, thank you, thank you.
—Steve Garnass-Holmes
A Non-traditional Blessing
May God bless you with discontent with easy answers, half-truths, superficial relationships, so that you will live from deep within your heart.
May God bless you with anger at injustice, oppression, abuse, and exploitations of people, so that you will work for justice, equality, and peace.
May God bless you with tears to shed for those who suffer from pain, rejection, starvation and war, so that you will reach out your hand to comfort them and to change their pain to joy.
May God bless you with the foolishness to think you can make a difference in this world, so that you will do the things which others tell you cannot be done.
If you have the courage to accept these blessings, then God will also bless you with: happiness—because you will know that you have made life better for others inner peace—because you will have worked to secure an outer peace for others laughter—because your heart will be light faithful friends—because they will recognize your worth as a person.
These blessings are yours—not for the asking, but for the giving—from One who wants
to be your companion, our God, who lives and reigns, forever and ever. Amen. —Sister Ruth Fox, OSB
Paul Robertson
Joyhauling With Team Jacobus 