October 31 update

I hope this is the last update on this issue.

Surgery will actually be December 10, not December 4.

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.

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.

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 gift of unexpected friendship

My new friend, Jeffrey Ritter, shared the following on social media recently. I couldn’t have said it better myself. My life is richer because of people like him I have met on this journey.

So, in the hospital, I was diligently walking laps, but kept finding someone's marker on the lap-board creeping ahead each day. Damn, who was beating my butt?

Well, we met, compared surgical scars (think of the scene in Jaws) and, despite wearing backless surgical gowns, became instant forever friends. Both survivors that will not stop being alive!

There is such strength when we fight together!

A quick Thursday update

Wednesday went by quickly as I had several visitors and different teams were checking in on me every couple of hours.

I was able to get up and walk laps around my floor. There’s a board where we’re to keep track of our laps. I ended up at 3 miles at the end of the day. I’m room 6309. (Yes, I am bragging.)

Ethan has been a great help to me, even staying overnight. It’s been good having him here and seeing him put his professional skills into action on a personal level (and he really likes this blanket Elizabeth gave me).

Yesterday afternoon, however, we noticed I was experiencing some sort of allergic reaction (probably due to the epidural), so that was suspended, and I’ve only had Tylenol and Motrin since then.

My battle scars are substantial, but I am proud of them because they mean Dr. Rossi was able to do what she needed to do, and I came out on the other side.

I am hoping to be discharged later today (or at the latest, tomorrow), and I look forward to a clear plan going forward that includes healing and health.

I truly appreciate all of care and support that has come from so many of you. Thank you for being on my team during this unusual season.

Above all that we could have asked or imagined

It wasn’t the worst case scenario. It wasn’t the best case scenario, either. It wasn’t even somewhere in the middle. It was even better than we asked or imagined.

We arrived at the hospital a little before 5 a.m., and I was absolutely miserable. I had become dehydrated by the bowel prep, and this was causing extreme nausea and fatigue. So when I was called back to the pre-op prep area, I was relieved.

My new friend I met on the phone yesterday stopped by, as well as Dr. Rossi and other members of the surgical team. Every caregiver was so kind and compassionate.

The patient care here at Duke is phenomenal. One guy on the anesthesiology team was even showing me photos of his dog and chatting with me while another physician was doing my epidural in the OR.

I entered the OR at 7:27 a.m., and the surgery started at 8:50. The procedure was complete, and I was ready for visitors by 10:12 a.m. This was much shorter than the time originally estimated!

The shortened time under anesthesia resulted in a fairly quick stay in the recovery unit, and I felt aware of my surroundings and confident in my ability to communicate almost immediately. My first questions:

Do I have a bag?

Did she have to breach the abdominal wall to remove the tumors in the subcutaneous tissue?

The answers to both questions was “no!”

Further, Dr. Rossi decided not to do a hysterectomy, and there was no need to resection the bowel (that tumor was incredibly easy to remove!) so I came away from the procedure with a less invasive procedure than I had anticipated.

It looks like I’ll be here at Duke through Friday. I’ve yet to get out of bed. (That’s a goal for tomorrow!) I still have an epidural administering pain meds. (I’m not complaining!) And I have a great volunteer nurse. (Ethan is the best human!)

Tonight Ephesians 3:20-21 is on my mind:

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.”

The last 24 hours

To those of you who have called, texted, and showed compassion in so many different ways, thank you.

I’ve spent today walking and following the dreaded clear liquid diet - which hasn’t been nearly as bad as I anticipated.

Surgery is scheduled for tomorrow at 7:10 a.m.

Looking forward to sharing positive news as I feel able!