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
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
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.”
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
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
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.
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.”
The February 14, 2025, appointments
God, You've been patient
God, You've been gracious
Faithful, whatever I'm feeling or facing
So I'll bring my hard-fought, heartfelt, it-is-well hallelujah
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.
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.
I just haven’t regained my stamina
This past week I saw an acquaintance I hadn’t seen in a while, and she shared with me that she had had abdominal surgery. I asked her how her recovery had gone and how she was feeling now, to which she replied: “I just haven’t regained my stamina.”
Those words resonated with me and summed up the way I’ve been feeling lately. I feel absolutely fine . . . but I am not the person I was before surgery in May 2023. I felt the same way after my initial surgery in 2019. I recovered quickly, I felt just fine, but I was never quite the same after that procedure.
I thought through that as I was run/walking around Wrightsville Beach yesterday morning.
I noticed groups of runners out together, a common sight on the weekends, and I thought back to the days when I ran every Saturday with friends. I remembered how easy 10 miles used to feel, how quickly a couple of hours on a Saturday morning could go by.
I have nothing to complain about these days. I’m thankful for the health I am currently enjoying, while always aware that the words “incurable” were spoken to me by my healthcare provider.
I go back to Duke November 13, and I am expecting a good report again. But, if I’m being transparent, I just haven’t regained my stamina.
And I miss it.
His glory and my good
I have seen my Father's glory
Revealed in Jesus Christ
And the more that I behold Him
The more He satisfies
When I gaze upon His beauty
When I see Him as I should
Then my eyes are lifted upward
For His glory and my good.
-CityAlight
Reclast infusion
Yesterday I had a Reclast infusion. In July when the DEXA scan revealed significant bone density loss in just one year due to the use of Letrozole, I had a choice: stop taking Letrozole or do something to counter the negative impact Letrozole is having on my bone density. Since my August CT scan was clear (which we will assume is due in part of Letrozole), I chose to stay on Letrozole.
I then had another decision to make. Would I choose to take a weekly bisphosphonate, a monthly bisphosphonate, or a yearly infusion?
After careful thought and consideration, I chose the Reclast infusion because it seemed to fit in best with my lifestyle.
I was warned that this weekend I could potentially experience side effects, including:
Nausea
Vomiting
Arthralgia
Back pain
Bone pain
Dizziness
Fever
Fatigue
Flu-like symptoms
General weakness
Chills
5:30 am The only issue I am really dealing with is back pain, which although significant, is not keeping me from going on my beach walk soon
7:30 am Back from the beach and not feeling great. Back pain. Shoulder pain, Abdominal pain. Nausea. My calves feel like they do after a marathon.
9 am I feel I have the flu.
I spent the rest of the day in bed and never finished this post, but I woke up today (Sunday) feeling basically back to normal, so I hope the worst is behind me.
I’ll know in a year if this infusion and the discomfort that came with it was worth it.
The August 12th appointments
I had three appointments at Duke today - 8 am labs, 9 am CT scan, 10 am oncology.
When I checked in for labs, the lady who took my information (Ashley) had cute gnomes on her desk. That was a fun way to start the day.
For the first time since I started going to Duke, the lab was well behind schedule - even at 8 am. I also learned that you can’t have a blood draw from your arm on the same day that you’re having a CT with contrast, so the blood draw had to be taken from my hand (which is a little uncomfortable).
The CT scan was relatively uneventful. This was the first time having a scan done at 20 Medical Drive, and it was quite convenient. I am not a huge fan of the contrast, but it is what it is.
The radiology technician who did my scan was terrific.
After the CT scan, I thought I had plenty of time before oncology, so I went down to Tropical Smoothie for a Detox Island Green, per my usual routine.
Although it was still early, I went to oncology, thinking I would just check in and hang out in the waiting area, but, again, Duke was having an off day. Seventeen people were waiting to check in at oncology, and it took a full 30 minutes just to check in. I was actually “late” for my appointment by the time I got through check-in!
I had a quick visit with a PA, Kimberly Nolte, and we discussed the benefits/downsides of Letrozole, both agreeing that it seems to be doing its job and that, despite the bone density loss, it is the best option currently. Further, after discussion, I have come to the conclusion that I am going to opt for an infusion therapy for the bone density loss, most likely Reclast. I would rather be ill for two days once a year than deal with weekly/monthly inconvenience of taking the pills.
CT results are back already, but blood work will take a few days. However, given there’s nothing visible on the CT scan, even if something were to show up in the blood work, there’s really nothing to do now but wait another three months.
My next CT scan will be in 6 months. My next labs and office visit will be in 3 months. I am incredibly thankful for another good visit. Thank you for all who continue to pray for me!
