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
We’re hoping for a surgery date in October.
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.
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
You are directed toward the glory of God in the highs and lows.
Mark Kelsey
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. ”
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.”
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
You can’t operate on what you can’t see.
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.