Plan B

I believe that sometimes something has to fail to lead us to what it is we really need.

There was a time when I seriously thought I wanted to be doctor. Organic Chemistry 2 changed my mind. I realized that while I had been good at the other chemistry classes, this one just wasn’t in my 19-year-old wheelhouse. There had to be something better out there. It turned out to be biology and psychology and I never looked back. The failure I experienced at one thing led me to what I needed more – and I am still an awesome chemistry tutor for the high schoolers in my house.

Maybe it’s been a class, a job, a competition, or even a relationship – failure can teach us many things and make room for something better.  Cancer treatment is no exception.

I’ve been living with uveal melanoma for six years and metastatic disease for the last twelve months. Doctors recommended a specific immunotherapy as a first-line treatment for this rare cancer that just doesn’t have a lot of treatment options outside of clinical trials. There is no cure. There is no remission. There are no bells to be rung. Currently there is only one FDA-approved therapy for uveal melanoma, yet only about 40% of the population is eligible because it requires you to be positive for a particular antigen. Unfortunately, I am negative.

So last spring I traveled two hours away for infusions of the immunotherapy drugs that were administered every three weeks for three months. I was made fully aware of the great potential for side-effects and the low return for tumor stability, but with the best medical teams behind it, I signed on the dotted-line, and I prayed for the best.

Unfortunately the immunotherapy didn’t work as we had hoped, but it did ramp up my immune system – crashing my left lung with a large pleural effusion along the way.  After a short stint in the hospital to drain the fluid, I recovered, crossed my fingers, and continued on. Yet the infusions came to an abrupt halt after the fourth dose with a diagnosis of immunotherapy-induced hepatitis – one of many “itises” I was warned about.  It took five months to reverse the liver damage which also meant five months without treatment of any kind.  The cancer progressed.

Yet I am still a believer that out of failure, a path toward what we need most can become clearer.  In these last five months, we took a deep-dive into the world of clinical trials and research, knowing that when it comes to cancer, time is the most critical asset of all.  The “we” here was my sister, Christine, and I.  I, the biology and psychology major, and she, the business and marketing guru, mapped out current trials and tried to learn all we could about the leading research. I’m sure my sister could now serve on the boards of many of the leading pharmaceutical companies as she can school you not only on the science behind their clinical trials, but also the details of their stock portfolios and quarterly reports. It has been a daily grind that we both trust will have significant life-prolonging benefits for me and others. 

Throughout this last year my sister has been nothing less than an unshakable rock of encouragement and hope when I have needed it most. She has shown me the power of love in the most selfless of ways. I go on record as saying that I have regretted every attempt to annoy her over the years, every joke I have cracked at her expense, and every eye roll – though I am still struggling with the latter – she gives me a lot of good material.

Cancer has had its way of showing me that some family bonds only grow stronger with some of life’s greatest trials.

So what’s Plan B?  I feel fortunate to have secured a slot in a clinical trial at UNC, my beloved alma mater. Even considering the significant commitments of surgery, possible drug toxicity, immune-depleting chemo, TIL infusions, and all of the side effects the aforementioned can yield, we feel this is the best option for me right now and my medical teams are in agreement.

I will be having surgery in a few days to harvest a tumor for the TIL trial.  Whether unfortunate or fortunate, the surgeon says I have several viable targets.  In our meetings this week, we also learned that I will be receiving the maximum test dose of the investigational drug in two weeks, being only the second patient in the study at this level.  We were briefed on some of the concerning complications that Patient #1 experienced at another trial site, but were reassured that research teams from around the world ZOOMed the day before to discuss my case. They collaborated to establish protocols that could potentially decrease my risks.  Thankfully Patient #1 is okay, and I believe I will be as well.

After a short break during the holidays, I will kick-off the new year back at UNC for chemo and TIL. There are certainly going to be some highs and lows along the way.  The trial’s lead doctor, after having had the difficult task of sharing what he had to about Patient #1’s adverse side effects, paused with a smile and commented that he was amazed that I, after hearing everything he had shared, had not flinched.  I confidently replied that:

1- I feel blessed to have been given a slot in this trial and do not feel it is a coincidence. Cures have to start somewhere;  

2- I fully trust the trial team. I trust in him; and

3-  I talk to God daily and have asked Him to use me for a greater purpose. I believe.

I shared a little of my faith and he shared a little of his. That exam room began to feel more like a sanctuary. 

So now I am preparing – my family, my home, my work, my body, mind, and spirit. Courage and hope are slowly replacing the tears and the fear, but some days are still hard.

Knowing that I am not going to be at the end of those swim lanes cheering on my favorite swimmers this season is particularly hard for me, especially because it is one’s first year and one’s last. Yet, I know they will undoubtedly hear my voice even if they don’t see my face. Kip and I have given them what I believe will forever be our greatest legacy – the gift of each other.  With a multitude of brothers and sisters, they will always have the best of cheering sections. 

Also hard on my heartstrings was missing out on my spot at the Johnny Blue Skies (aka Sturgill Simpson) concert in Raleigh a few weeks ago. This goes without words for those who know me best. On more than one occasion, I tearfully cued up tickets, but the uncertainty of the trial schedule stopped me every single time. Knowing that I hadn’t missed a Sturgill tour in ten years and considering this may be his last tour for a while made it all feel like a gut punch to someone who is keenly aware of each turn of the calendar page. Yet I was just too tired and knew that Johnny Blue Skies would not have experienced the best version of me.  On the night of the concert, many friends called and texted videos and pictures. I was able to experience the gift of seeing the concert through the eyes of others which did ease the pain.

I sure hope that one day the man himself will know just how much joy his music has brought me over the years. His voice is the best kind of healing balm.

Again, sometimes when things goes awry, it can make space for something better. That new JBS concert tour I missed featured a large disco ball- a special symbol to some of my most enduring friendships. As I have shared before, a few years ago, my lifelong girlfriends and I purchased the enormous mirrored-glass disco ball that lit up every slow skate we skated at the local Rollerdome every Friday and Saturday night while growing up.

It has lit up our cars, shined bright above us on our birthdays, and sparkled upon our favorite horse pics at the annual Kentucky Derby party.  It has inspired ornaments hanging on each of our Christmas trees and the “Paula Strong” t-shirts that they all wear in support of me. This week at our monthly girl’s night dinner they gifted me a miniature mirrored disco ball to light up my hospital room – because I’m not sure they had quite figured out how to smuggle in the original.

I have come to believe that all the glitz and shimmer and light that large disco ball has shined on us all of these years is really just a reflection of the great love we share for each other.

Kip and the kids are “Paula Strong” too – amazingly so. Some ask a lot of questions. Some none at all. Both are okay. They are riding this wild rollercoaster with me, and I would like to believe the hope I feel is contagious. They pitch in, help out, and take care of me and each other.

But there are a lot of us. Our moms and sisters are putting plans in place to help during my extended hospital stays, and some of the best friends a girl could ask for will be doing the same. There is a pew full of prayers being prayed for me at church and even my work family has reminded me every day that I need not worry about a thing. Everything will be alright.

God speaks to us in so many ways and through so many voices, even the quietest of these.

Plan A may have failed, but there is a hope that it has made room for something better. Plan B will not be easy. There will be rough days and some rougher days. But there will also be many good days ahead. The FDA is set to approve a Plan C in early 2027, but as my trial doctor said, I may not need another plan for some time. That is my wish. I am continuing to trust the process and ask that you all continue to pray over and all around us.

I am hoping to work some, to write some, to heal some, and to love a lot. I’ll be packing special things that help me feel connected to so many of you so that you all are never too far away.

Paula 2.0 coming soon.

God says, “Your waiting season will not last forever. At the right time, things will unfold the way you hoped. Trust Me.” Habakkuk 2:3