My First Lupron Injection

I received my first injection of Lupron today, October 28. It was a painless injection in my hip. I really didn't feel a thing.

I'm hopeful the days ahead will be equally uneventful, but just like I did with Letrozole, I will post regular updates on how I am feeling on Lupron and (eventually) whether or not it is efficacious for me.

October 28 update

After nearly a month of feeling like things were moving so slowly, I'm happy to share that the last two days have been busy with progress.

Yesterday afternoon I got the call that Lupron had been approved by insurance and that I could come in today for my first infection. 🙌

Today I got notification that the December 4 surgery is a go, with Dr. Rossi and Dr. Zani both being available to do their parts of the procedure.

I got my first Lupron injection, scheduled my second for November 24, and also had my pre-anesthesia consultation this afternoon. I'm feeling really good about the plan and am eager to move forward.

This is what was on the wall in the procedure room today.

October 24 update

I spoke with Dr. Rossi. Currently she does not have availability to do surgery until December 4. Because we have to coordinate with Dr. Zani’s office, we are not certain if that will be the date or not.

I will be on a priority list for surgery before December 4 should something come available, but the likelihood of that is minimal since we need both Dr. Rossi and Dr. Zani in the OR.

In the meantime, we are going to start Lupron. I will need to go to Duke next week to get that shot because she cannot prescribe it at another facility.

Specific prayer requests:

• A surgery date before December 4

• Noticeable efficacy from starting Lupron

• Patience in the waiting

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.