We want God to work within our comfortable box

I heard that phrase on a podcast, and I've spent the morning mulling it over.

I woke up this morning to a honest, vulnerable text from a friend who's going through a hard time. My first reaction? I wanted to jump in with a quick reply, a comfortable answer. But then I remembered the advice I often give to others, “Practice the pause.” And so I did. I did not send a reply. Instead, I came here to the beach to run, to walk, to hear, to see.

“We want God to work within our comfortable box.”

I thought on that phrase, and also on how we want Him to work quickly, within our time frame. In our microwave, easy-prep society, we want the answers now, and we often give answers without careful prayer and reflection.

But that's now how we come to know God and hear His voice, isn’t it? We hear Him in the pause, in the time of prayer, in the discipline of reflection.

But that often feels so uncomfortable. In a world of noise and constant information, I fear most of us are uncomfortable with listening and discerning.

Perhaps Henri Nouwen said it best:

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

I am thankful for friends who can tolerate not knowing, friends whose greatest investment in my life is through their prayers, friends who practice the pause, friends who don't try to cure me or offer unsolicited advice. These are friends who can sit quietly when God isn't working in a “comfortable box.”

I hope I am that kind of friend to others. I want to be able to be comfortable with the uncomfortable, to be able to rest in the pause, to know with no doubt that God is working in whatever space He deems best.

Did I reach out to my friend this morning? I did, and when I did reach out I had just one thing to truly offer - prayer.

And I believe that is enough.

September 16 appointment

It was an early morning as I left for Duke before 6 a.m.

The redeeming factor in the early start was I got to see a gorgeous sunrise on the drive.

I went to Duke today for my new patient/pre-op appointment with Dr. Sabino Zani, Jr. Duke’s website lists his areas of expertise as:

• Metastatic Disease

• Complex Biliary Surgery

• Robotic Surgery

• Liver Cancer

• Pancreatic Cancer

I check three of those boxes, so I am hopeful we’re a good fit!

This was a simple appointment with conversation and time for questions on both our parts.

A few key takeaways:
1) No dietary restrictions before the liver resection. I’m thankful that I have a healthy liver apart from the noted areas of concern.
2) He is cautious about the idea of my leaving the hospital same day. He said there's a possibility of needing to stay one or two days. There's a lot that is unknown until they have a clear view of the inside of my abdomen.
3) He believes I'll have 5 incisions, the largest being reserved for the portion of the liver being removed.
4) He did a rotation under Dr Rossi during residency, and they’ve now both commented to me that they work well together.

Today marks one more appointment down that brings me one step closer to surgery on October 22. There are still details to work out and a number of unanswered questions, but I feel like today was productive.

I even stopped at The Mad Boar for their Build Your Own Sides plate lunch, a great way to break up the long drive back home.

I was reminded today of an old hymn from my childhood. The words seems fitting.

“I don’t know about tomorrow,
I just live from day to day.
I don’t borrow from its sunshine,
For its skies may turn to gray.
I don’t worry o’er the future,
For I know what Jesus said,
And today I’ll walk beside Him,
For He knows what is ahead.

Many things about tomorrow,
I don’t seem to understand;
But I know who holds tomorrow,
And I know who holds my hand.”

— Ira Stanphill

The surgery date is set

Important dates:

• September 16 - consultation with Dr. Zani who will do my liver resection

• October 10 - PET CT scan & pre-op visit with Dr. Rossi

• October 22 - Surgery with Dr. Zani and Dr. Rossi. They are hopeful that this procedure will be able to be done laparoscopically, but because Dr. Zani will be re-sectioning my liver, my recovery time will be longer than it was 6.5 years ago when I had my first laparoscopic surgery.

• November 14 - post-op visit when we will discuss adjuvant therapy options.

The August 29 MRI and the Current Plan

On Friday, August 29, I drove up to Raleigh for a DEXA scan and an MRI of my liver. I have not gotten results on the DEXA scan yet, but I do have the MRI results, and I have spoken to Dr. Rossi’s office regarding them.

I actually got the MRI results Friday afternoon, but I wanted to speak to someone at Duke before sharing, especially since the MRI noted: “Musculoskeletal-subtly enhancing marrow replacing diffusion restriction lesion in the right L1 vertebral body is suspicious for metastasis.” This is the first time there has been any indication of spread to that area of my body, and I questioned whether this would change the recommended treatment we had talked about after the July PET scan. (It does not.)

To keep it simple, here is what we currently know and here is the current plan. There are many unanswered questions, but hopefully those will be answered to the best degree possible after the October 10 appointments.

October 10 - PET FDG SCAN and Pre-Op Visit with Dr. Rossi.

October 15 or 22 - Laparoscopic surgery at Duke.

The Goal- Minimally invasive surgery

Recovery - I have been told not to schedule anything from October 15 through November.

Treatment options for after surgery are being discussed, as noted in a recent post. Much will depend on the PET results on October 10 and how the surgery itself goes.

I am thankful for those of you who continue to pray. Please pray that my medical team and I will be able to discern together the best course of treatment after surgery.

I’m especially thankful for friends who, though eager to know these results themselves, have given me time and space, offering to “check the blog” instead of asking me to text them directly. A little bit of understanding right now is incredibly helpful.

And to end on a positive note, I am thankful for my friend - Rachel Dobrowolski. We were able to coordinate schedules between my two appointments, and spending time with her was refreshing and encouraging. To know Rachel is to love her.

A faith with no coincidence

I was walking the beach this morning, praying through the thoughts in my mind, when this song came up on my playlist. I listened once and hit repeat. And then hit repeat again.

Burning Bushes

(Gullahorn/Kinney)

I've never seen a dead man come to life or seen a blind man get his sight.
I've never seen water turned to wine.
It isn't that I don't believe but it would be easier for me if you would just send down a sign.

I remember the childlike innocence.
A faith with no coincidence.
The world around was living proof.
Has that world just disappeared or is it me that isn't clear how to recognize it’s you.

I walk through the water and the waves looking for a drop of rain but you're still not coming through.
Maybe its new eyes that I need or maybe it takes more faith to see I'm drowning in the truth.

Chorus:
I'm praying for a miracle to let me know you're listening.
Waiting for a lightning bolt to strike.
Walking through a garden of a thousand burning bushes looking up to heaven for a sign.

---

As I was thinking about “It isn’t that I don’t believe, but it would be easier for me, if you would just send down a sign” - asking myself what it looks like to ask God for a sign, what it means to see that sign for myself, I saw the most beautiful shark’s tooth in the sand. In fact, I had walked right past it before I processed what I had seen and had to turn to go back and pick it up.

I was reminded of a conversation from over a year ago with my friend, Jenni, when she asked me, “What is God trying to teach you through these sharks’ teeth?”

I remember laughing a bit when she asked me that question, but this morning I realize that on the very morning I was thinking about asking for a sign, it was there.

An update after a conversation with Dr. Rossi

A PA from Duke called a little while ago, and Dr. Rossi called a few minutes after that. I took notes and am hoping I summarize them well here while they are fresh in my mind.

As noted before, my Inhibin levels are rising, and the PET scan revealed three spots - one near/on/in my liver and two in the peritoneal cavity. Dr. Rossi is hopeful that we can do a debulking surgery with small incisions, but we won’t really know if that’s possible until more information is gathered, specifically about the liver.

She did tell me that surgery will need to be followed up by other therapy - perhaps chemo, perhaps a clinical trial based on gene mutations (a basket trial vs. an umbrella trial).

We are hoping for a surgery date in October and might have a tentative date next week. I have some things scheduled in August and September that I don’t want to cancel, and Dr. Rossi was supportive of my following through with plans already made.

In summary, my next steps are:

1) An MRI of my liver - August 29

2) A review of that MRI with a surgical oncologist

3) A pre-op consultation - October 10

4) Another PET CT scan - October 10

Thank you for caring and for praying.

The July 17th PET Diagnostic CT Scan

Since the weekend is here and I’m unlikely to have any further information before Monday, I decided to write a quick update after yesterday’s appointment since many of you have reached out and asked how it went.

The procedure was done at Duke Raleigh, so I did not have to drive all the way to Durham. And, since my appointment wasn’t until 11:00, I used this trip as an opportunity to stop by to see my parents in Fayetteville.

Check in and all that went with it was easy, and by 11:30 my blood sugar had been checked and the tracer had been inserted through an IV.

I had an hour wait before we could do the scans, so I watched Family Ties and drank the awful contrast they said would make imaging more clear.

The scans took less than 30 minutes, and Steeve and I were on the road back to Wilmington before 1:30.

Today I got results on My Chart, but I have yet to speak to Dr. Rossi to know what she would like to do next. I would assume the recommended MRI of the liver will be first on the to-do list, but I won’t really know anything until I can talk with her.

Earlier today a friend who saw these results asked, “How are you feeling about the results?” The truth is I’m not surprised, but I am a bit bummed because I was hoping this recurrence was in subcutaneous fatty tissue near my scars as that would be an easier issue to address.

I’ll let you know more when I get further information from Dr. Rossi. Thanks for praying and for caring.

Two years with Letrozole - June 2025

Two years ago I was wrestling with the question of whether or not to begin taking Letrozole. My May 2023 post-op pathology report had revealed the following:

Combining this information with the fact that I had my first surgery for GCT in 2019 and had already recurred less than 4 years later, going on Letrozole seemed to be the best course of action for my situation.

I was anxious about starting Letrozole, and so I began keeping a diary of sorts. That turned into several posts here on the blog, information I hope helps other women facing the same choice.

Despite the fact that my Inhibin A, Inhibin B and AMH are elevated, we have decided to continue with Letrozole for the time being. It is now a part of my daily routine, I don’t have any great adverse side effects, and we still believe the potential benefits are greater than any risks at this point, though I do question have effective it actually is for me since it would seem I am entering into another recurrence.