June 20, 2025 update

After weeks of back and forth with insurance denying coverage for procedures, I was finally scheduled to have the requested PET scan today at 11 am. However, yesterday Novant called to say the scan was cancelled because there were issues with the insurance code assigned to the procedure. Further, Novant does not even have the required equipment to perform the scan as requested.

A month after the first request was made, it seems I’m no closer to getting that scan than I was on day one.

We had hoped scheduling the scan here in Wilmington would save me a drive to Durham, but this situation has shown me it’s best to just keep all my care at Duke.

Surrender, but don’t succumb

On Friday, Dr. Rossi called to let me know she wants me to come back in August instead of waiting until November, and she wants me to get a PET scan soon - just to see if it will show what the CT scan has not. Where are those cancer cells hiding? Is there anything visible yet that we can find?

Saturday morning I left for New York City. Since going there solo in November, a weekend alone in Manhattan is becoming “a thing,” and each of these solo weekends has included attendance at Fount Church on 44th Street in the Palladium Theater. I went the first time because I was intrigued by the idea of a church meeting right off Times Square, but I have gone back twice because I found the worship to be genuine and the messages impactful.

Yesterday was another Ebenezer stone to remind me that on this journey, I have never walked alone, and I never will.

Pastor Mark Kelsey was visiting from Australia and brought the message - “Why Jesus.” About 13 minutes into the sermon, Pastor Mark began sharing the personal story of his family, the story of his wife Bernie’s diagnosis with ovarian cancer last fall. As he shared their story, I knew that I was there to hear it.

“When you surrender God actually prepares and gives you all you need to take the next steps for what God has for you. God wants to ready you for the challenges ahead. ”

— Mark Kelsey

After church we were all able to talk for a little while, and we prayed together. It was a sweet time. As we parted ways, I realized I had introduced myself, hoping I could encourage Bernie, but instead it seems I am the one who received the blessing.

Toward the end of the sermon, Pastor Kelsey referenced A Non-Anxious Presence by Mark Sayers.

“As we walk through life’s ups and downs... surrendering to the Father’s will . . . we become a non-anxious presence in the world.”

— Mark Kelsey

Yes and amen. These phrases -“a non-anxious presence” and “surrender but do not succumb” - are ones I’ll remember in the days ahead.

Bernie and I after church at Fount NYC. I’ve committed to praying for her healing in the days ahead. Will you join me?

The May 16, 2025 appointments

May 16. 3 pm.

Though my appointments at the Duke Center for Women’s Cancer Care Raleigh were in the early afternoon, I headed to Raleigh early Friday morning with Rick. He had work to do in Raleigh, so it made sense for us to ride up together.

That gave me time to meet a friend for breakfast, take a walk at Lake Johnson Park, and go to the State Farmer’s Market before heading to my CT scan and labs.

The check-in process once I arrived was a bit of comedic error as the young lady at the front desk insisted I wear a “Fall Risk” wristband (I just hiked to the summit of four mountains earlier in the week with Rick. I think I’m okay) and 30 minutes later when I hadn’t been called back for my appointment, it was discovered she had never actually checked me in!

My scan and labs were done simultaneously and were quick and easy. In fact, my scan results were back before I even saw Dr. Rossi. She came in, excited to tell me the good news, but I had to admit I’d already seen MyChart.

Based on this scan and the last one three months that read the same (and despite the elevated Inhibin B levels from my last labs), Dr. Rossi decided to move me to 6-month visits with 6-month CT scans, a slight, but significant, change to my protocol. I’m thankful for more “time to breathe” between appointments.

When I asked Dr. Rossi why she was comfortable with this, she said that despite the elevated Inhibin B levels, we can’t operate on what we can’t see. I am comfortable with that, too.

So I said goodbye to Duke for what I hope will be the next six months (provided the inhibin levels haven’t jumped a crazy amount) and headed here to Lucky Tree to plan the next six months of life (something I had sort of been holding back on, pending the results of the CT scan.)

I won’t share this post publicly until I get the blood work back - in about a week - just in case there’s something substantial there. But, in this moment, I am feeling really good about what’s ahead.

Since I first started seeking answers in 2017, I’ve never had six months between physicians’ visits. I’m thankful for a good visit and looking forward to having six months before I have to really think about this again.

May 22. 7:30 pm

I got my Inhibin A and B back. B is trending up again. A is out of range for the first time since surgery two years ago.

I suspect Dr. Rossi isn’t going to change anything she told me last week, but I’ll have to wait and see. I have noticed some significant physical changes this week that remind me of the symptoms I had in 2019 and 2023, but again, we can’t operate on what we can’t see. So, I guess we’re now in a waiting game.

My current plan is to enjoy the summer ahead to the fullest, just like I did after surgery in May of 2023.

May 30 update

Dr. Rossi just called me herself to let me know I need to come back in August, and I need to get a PET in the next couple of weeks.

Asking for prayer

I never thought I’d be sharing this blog with my brother, but here we are as he starts his first day of chemotherapy today.

Please pray for him and his wife as he has a fairly intense schedule ahead, but one that his physician is hopeful will yield positive results.

“After four months of tests and diagnosis, the journey of 12 weeks of chemotherapy starts today, Monday. My oncologist is optimistic that this will knock it out.

Wish me luck and keep me in your prayers please.”

— Bobby

The February 14, 2025, appointments

Note: There is good news and “not so good” news. I had written this out chronologically as I received the reports. Several friends had asked, “How was the Friday appointment?” and I was hesitant to give a definitive reply until all results were in for this very reason.

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My quarterly checkup at Duke fell on Friday, February 14. How romantic, right? A date with a lab tech, a radiology technologist, and an oncologist.

For the first time, I chose to see Dr. Rossi at a Duke facility located in Raleigh. I am so thankful I found this location.

Macon Pond Road is in a great area, so not only was the office efficient, but getting in and out was much easier than at the main Duke cancer center. Hannah went with me, and we even had time to grab coffee (for her), tea (for me), and some gluten-free, “good ingredient” baked goods at Lucky Tree between my labs/CT scan and my appointment with Dr. Rossi.

We had the CT scan results before my appointment with Dr. Rossi, so we were able to rejoice together and start discussing what happens once I pass the 2 year post-surgery mark in May.

We discussed what would happen if I were still NED at my May appointment, including 1) moving from appointments every 3 months to every 6 months and 2) (potentially) going off Letrozole.

I was so happy to hope both of the above options were in my future. I was hopeful, an emotion I don’t generally allow myself the luxury in which to indulge.

Rick and I went to NYC for the weekend and had a great time.

But then came the lab results early today, Wednesday, February 19. For the first time since surgery, one of the numbers (inhibin B) is out of range. There is not much we can do with this information at this time, especially since I just had a clean CT scan. These lab results are more about trends than the actual numbers, so, for now, we’ll wait to see what happens. It would be appropriate to say, “Something is brewing.”

How thankful I am that the Lord has dealt graciously with me these last two years, and how thankful I am for all of you who have been so supportive. I have a feeling I’m going to be playing the following on repeat for the next few days:

Letrozole and Running

By and large, my experience with Letrozole has been much easier than anticipated. One of the side effects I had noted was an overly elevated heart rate when running. As this is not a common side effect of Letrozole, my oncologist referred me to a cardiologist who did an echocardiogram. (The results were normal.)

I have recently wanted to run more, and thanks to my daughters-in-law I have found that a run-walk method of running is working well to keep my heart rate in check, while still covering the miles in a timely manner.

We’re doing a half marathon together in just over a week. I can hardly wait, and I am thankful that this small change in how I run has made all the difference in my ability to continue to engage in an activity I love.

Whatever happens

“Whatever happens, stay alive. Don't die before you're dead. Don't lose yourself, don't lose hope, don't lose direction.

Stay alive, with yourself, with every cell of your body, with every fiber of your skin.

Stay alive, learn, study, think, read, build, invent, create, speak, write, dream, design.

Stay alive, stay alive inside you, stay alive also outside, fill yourself with colors of the world, fill yourself with peace, fill yourself with hope.

Stay alive with joy.

There is only one thing you should not waste in life, and that's life itself."

~Virginia Woolf

The November 13th appointment

This appointment was a bit different because for the first time, I had a midday appointment at Duke, and I drove myself. So the first thing I did upon arriving was have lunch in the adjacent food court - another first. I was happily surprised by the variety of options.

The next stop was the lab where I waited almost an hour because they were running behind schedule.

The blood draw itself was extremely quick and easy, and despite waiting an hour for it, I was able to make my next appointment without being late.

I was sure I would be waiting for a while to see Dr. Patel, so I put up my feet, ready to relax, but I was immediately called to the exam room.

The appointment with Dr. Patel was also quick and easy, and I was checking out minutes later.

The schedulers at Duke are amazing, and we were able to book my next appointment for February 14 with a CT scan, labs, and the actual appointment all at the same location spaced one hour apart.

I grabbed a Detox Island Green from Tropical Smoothie and was on the road back to Wilmington in short order.

Today I got the results of my lab work.

Glwa pou Bondye.