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.
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.
It’s my anniversary!
This journey began on May 2, 2019, when I had my first surgery here in Wilmington. Last year on this same date, I had my second surgery - the big surgery - at Duke University Hospital. Two life-changing surgeries. One date - 4 years apart.
How thankful I am for the excellent care I have received through the years and the kind support of family and friends through it all.
Today I am reflecting on the goodness of God, and I'll be listening to this "Just as Good" (Chris Renzema) on repeat.
And I will build an altar
And stack it stone by stone
'Cause every Ebenezer says I've never been alone
My faith will surely falter
But that don't change what You've done
'Cause every Ebenezer points to where my help comes from.
It’s a delicate balance
Though each of us is living with GCT, we’re each on our own unique path.
When I was first diagnosed with Granulosa Cell Tumor in 2019, I did a fair amount of research on the subject, but I did not seek out community with others with the same condition.
However, when I was diagnosed with a recurrence in February of 2023, I immediately began searching out a support system, wanting to gather all the information I could before moving forward in making crucial decisions. I found a group of women on Facebook who have been a great support system, a wealth of information.
On the one hand, I am so thankful to hear the stories of others, to read about their experiences, to understand how they came to the decisions they have about their own care.
On the other hand, some days it gets to be a little heavy, hearing how difficult things are for some of my GCT sisters, wondering if my life will be like that in the days ahead.
It’s in those moments, when my mind goes to the “what ifs” I know I need to step back, to stop reading, to give myself room to breathe and remember every person’s story is unique. Though each of us is living with GCT, we’re each on our own unique path.
There's a delicate balance between being informed and being discouraged.
A different level of care
From scheduling to reception to nursing staff to physicians, the patient care I have received at Duke is far beyond anything I’ve experienced anywhere else.
I had my first appointment with endocrinology yesterday, and I was reminded again of all of the reasons I am thankful I transferred my care to Duke. I am exceedingly grateful for good insurance that allows me options and choices.
Our health care system as a whole is broken, but I can say without reservation that kindness, compassion, and professionalism characterize standard of care at Duke and make the long drives to and from appointments worth every mile.
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.