October 22 was supposed to be surgery day

As I walked onto the beach this morning, I realized, “The plan was to be in the OR at Duke today, but instead I’m seeing this glorious sunrise.”

Dr. Hillman and I spoke again by phone last night. I am so thankful to have him on my team.

He has talked with Dr. Rossi, and on Friday, Dr. Rossi will call me. We do not have a new surgery date yet, but it looks like I will soon have a full open abdominal procedure (similar to the surgery I had in May 2023), followed by a new drug therapy (the specifics of which are still undecided).

After the last 12 days which were full of uncertainty, this morning I am at peace with what may lie ahead. Although I wish all of this could have moved along a little more quickly, I am thankful that by not rushing to a decision, I’ve had plenty of time to process changing circumstances and prepare my heart, my mind, and my body for the days that are coming.

“I will remain confident in this, I will see the goodness of the Lord.”

Psalm 27:13

The trip was worth it - October 18

I am currently sitting at the San Diego airport, waiting to board my flight back to Wilmington. It’s been just over 48 hours since I made the decision to fly out here and hope to see Dr. Hillman. Thankfully his office is incredibly easy to work with, and later on Thursday (but before I boarded my flight out of Wilmington), I had a confirmed appointment for 3 pm yesterday.

I was thankful for time at Pacific Beach yesterday morning before heading to my appointment at UC San Diego Health in the afternoon.

Dr. Hillman and his staff were incredibly kind, professional, and unhurried in their interaction with me. I felt seen, I felt heard, and I felt that everyone wanted what is ultimately best for me. After a great deal of frustration with the healthcare system in general over the last two weeks, yesterday was a breath of fresh air.

We do not have a firm plan in place at this point, but Dr. Hillman wants to coordinate with the team at Duke, and it is his recommendation that I have another open-incision debulking surgery, followed by combination drug therapy utilizing Letrozole and Lupron. Though I do not look forward to another large surgery, I do believe his recommendation makes sense when combined with the recommended therapy afterwards.

I was able to connect with Hannah’s brother and his family last night for dinner (they live in the area), and it was a great way to end a whirlwind trip.

Next stop, North Carolina!

This week has been an emotional roller coaster

This message came through last night. It’s incredibly disappointing as the virtual consult was for today, and I don’t really have time to find another physician. My virtual consultation with Dr. Hillman is now canceled because I do not have a NC physician willing to participate.

Lab results from last Friday’s visit posted last night, as well. They are a bit shocking to me, as they show significant progression of the disease.

I have purchased a ticket on American Airlines and am heading to San Diego this evening, hoping Dr. Hillman will see me in clinic tomorrow.

Prayers appreciated!

I honestly do not know how a person without good health insurance, a quality education, and access to resources navigates this broken US healthcare system.

Don't burn bridges

Taking a great deal of advice from other women with GCT, this morning (October 13) at 7:30 I showed up at Zimmer Cancer Center without an appointment and asked to be seen.

The front desk said, "You have to have a referral." (Who just walks in at an oncology office and gets seen on request, right!?) I went on to do a bit of begging, and the front desk said they'd send a note back to the team of my former oncologist, Dr. Robinson,

A few minutes later, my favorite nurse, Melinda, walked out. She remembered me, and she had taken a look at my chart. It was 7:45 am, and she asked if I were willing to hang around until 9. Of course, I said yes. Five minutes later, a 9 am appointment appeared on my phone, but I didn’t even have to wait until 9 am.

At 8:30, I was called back. Dr. Robinson saw me in the hall, smiled, and gave me a hug before going to see another patient.

I went into another exam room where I asked the normal questions you get with a visit.

15 minutes later Dr. Robinson came in, and he gave me his full attention for an extended period of time, answering every question I had and affirming his willingness to talk to Dr. Hillman and his willingness to think outside the box.

I reminded him I am willing to drive full speed into a brick wall, but I am not willing to die by a thousand paper cuts.

He seems to be okay with that, too.

I look forward to sharing more after my telehealth consultation with Dr. Hillman at UCSD on Thursday.

A brief update - Oct 11

As many of you know, I had labs, a PET CT scan, an appointment with a nutritionist, and my pre-op visit yesterday. I will have more to share next week, but as a number of you have reached out by text to check on me, it’s easier to just share a brief update now and fill in details later. The PET scan information has not been published to MyChart, though I have seen it and discussed it with my health care team at Duke.

The basics:

• The scan showed interval increased size of the previously seen nodules, as well as new hypermetabolic peritoneal nodules, consistent with worsening peritoneal disease.

• Surgery is canceled as it’s no longer a realistic option.

• Dr. Rossi and I talked last night about the possibility of pursuing chemotherapy and/or a different endocrine hormone option.

• I am seeking a second opinion from Dr. Tyler Hillman at UCSD, but I do not have any intentions at this time of transferring my care from Duke.

Thank you to those who reached out by text yesterday with encouraging words, not expecting a response. That was meaningful to me.

I know many will ask how I am feeling. Physically I feel great. I have no real symptoms. Emotionally I am pragmatic and moving into planning mode, though we don’t fully know yet what that will look like.

For this weekend, there are plenty of other things to concentrate on, most importantly Hannah’s baby shower which is tomorrow. She and Ethan are having a GIRL!

When I was a child, I memorized the entirety of Psalm 27, and this morning verses 13 and 14 are on repeat in my head:

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.
Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

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.