Today's update 7/31

Greetings from Room 216. I'm still here, but I'm not complaining. The care I'm receiving is exceptional, and pain management is going well.

I continue to have the best visitors and the best nursing care. I have nothing about which to complain.

I am becoming an expert at ambulance transports, and once again yesterday's transport was exceptional.

As I first wrote in 2023, I do not know what the days ahead will bring, but I am determined to live them with as much grace and enthusiasm as possible.

Thanks for joining me on this journey.

Today's update 7/28

Good morning from room 216. It's a new day.

We had a few issues with pain management last night, but we're back on the right track this morning.

I'm scheduled for interventional radiology tomorrow, as well, to block certain nerves in an effort to provide even better relief.

We’re hoping I'll be discharged by the end of the week.

I had a fun visitor yesterday. His name is Fenway, and he's been a hospital volunteer for 14 years.

Have a lovely day, Everyone!

Today’s update 7/27

Yesterday was a gift. Pain was under control, and I was able to spend considerable time with family and friends. It was a sweet and productive time.

However, my pain returned with a vengeance overnight, and we are working this morning to find ways to manage that. Please be in prayer with us.

I'm in the hospital

Due to uncontrolled nausea, I came to the Emergency Department early this morning.

My doctors have made the decision to admit me.

I'll update more when I can.

Immunotherapy, Infusion 2, 7/20

I'm sitting at the infusion center, waiting for my next treatment of immunotherapy. I feel awful.

This morning Dr. Robinson gently reminded me that I can decline treatment. His compassion was evident as he looked me in the eye and acknowledged both the pain I am living with and the uncertainty of the road ahead. I could be going through all of this with no measurable impact on the disease, just as chemotherapy ultimately had no effect.

I am now making decisions in a place where there are no guarantees, only hopes and possibilities. Today feels heavy.

As I sit in this infusion chair, I find myself asking, “Can my greatest pain become the place where God accomplishes His greatest work in and through me?”

I’m going to continue to live

Good morning, Everyone.

It's now been a few days since I went to the ER and finally had to admit the pain I was experiencing was more than I could push through and that over-the-counter medications were no longer enough. The CT scan performed that morning confirmed what my body had already been telling me: the disease is progressing.

In many ways, this was a turning point.

For the first time, I had to acknowledge that this season has changed. I have always avoided prescription pain medication whenever possible, but I also realized something important. Pain management isn't simply about reducing suffering. It's about protecting the things that matter—the things that make me who I am for as long as I am able. Walking Wrightsville Beach in the morning. Heading to Florida over the weekend to work with some of my favorite people at Concilium. Spending time with people I love here in Wilmington. Enjoying the gifts God continues to place in front of me each day.

That realization has been freeing.

Over the last few days, I've been asking the Lord one simple question: "Father, what does faithfulness look like with the time I have?"

I don't know how many days lie ahead. None of us really do. But I know this: today is a gift.

So I'm going to keep writing. I'm preparing my first devotional, Fear Is Not My Future, for publication. I'm continuing work on the second book in the series. I'm making plans for August, September and even Christmas because I would rather prepare with hope than wait with fear. I'll continue to travel as I am able. I'll keep showing up at Wrightsville Beach each morning for as long as my body allows.

I'm going to continue to live.

On the home page of my website are these words: "I do not know what the days ahead will bring, but I am determined to live them with as much grace and enthusiasm as possible."

I needed those words when I wrote them in 2023. I need them even more today.

They remind me of the heart posture I chose when my first recurrence was diagnosed, and they continue to call me back to that same place of trust. I'm also understanding more fully, day by day, that faithfulness is not measured by how long we live. It is measured by how we receive and steward whatever the Lord places in our hands while we have time.

That is what I want to do. I want to steward my life well.

Thank you for praying for me. Thank you for encouraging me. Thank you for allowing me to share my thoughts with you.

I continue to believe what I have believed from the beginning.

Fear is not my future.

Christ is.

Immunotherapy Update

It’s been two days since my first infusion, and thus far the side effects have been minimal - fatigue, dry mouth, muscle soreness.

These issues weren't bad enough to keep me from watching Miss Clara for a couple of hours today or to keep me from my morning walk at Wrightsville Beach.

On a positive note, I had been dealing with considerable pain and inflammation in my abdomen for the last two weeks, and both have substantially subsided since Monday’s infusion. Coincidence? Causation? Time will tell.

Immunotherapy it is!

We got back from the World Cup yesterday afternoon and shortly thereafter I had a telehealth visit with Dr. Robinson. We talked about moving forward with immunotherapy as Dr. Rossi is in favor, as well.

Today I had a telehealth visit with the Family Nurse Practitioner at Zimmer, and we went over some of the specifics of this treatment, including dates and times.

Each cycle of immunotherapy will be 6 weeks long. On Day One, I will receive two drugs - Nivolumab and Ipilimumab. On Days 15 and 28, I will receive only Nivolumab. Day One will last roughly three hours. Days 15 & 28 will last roughly an hour to an hour and a half. We did not discuss how many cycles, but so far, we have two and a half rounds on the calendar. That will take us into mid-September. As I learned during chemo, dates are subject to change based on my body’s response to this treatment.

I am finding that a common misconception around immunotherapy is that the side effects will somehow be less or “better” than those from chemotherapy. That is not true. Immunotherapy carries its own risks, and they are substantial. Therefore, during today’s visit we talked about the risks to my thyroid health, my pulmonary health, and my digestive health. I was also told to keep Zofran on hand as nausea is a real possibility, as is a rash and a fever. My thyroid function will be checked every six weeks.

During discussion, I noted that I already have scheduling conflicts in August and September with treatments Novant scheduled, and I was told that I can “live my life” and dates can be adjusted as necessary (i.e. bumped back a week to accommodate travel).

The big news from the call? Insurance has already approved this treatment! Both Dr. Rossi and Dr. Robinson had been cautiously optimistic about the ability to get approval, so to get it within 24 hours seems like a big win. It helps that this is my 3rd line of treatment, my cancer is platinum resistant, I have high grade histologies, and my disease is termed “non-curative.” The goal of this therapy is palliative.

I’m looking forward to starting treatment on July 6. My port lab is scheduled for 10 am, I should see Dr. Robinson at 11 am, and the infusion should start about 11:30 am.

Thanks for taking the time to read this far. I included quite a few details you’re free to research on your own. I appreciate all of you who take the time to read updates and give me space to process without asking too many questions.

Also, your prayers mean everything!