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.
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.
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.”
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.
Diet matters
The following is a post I shared with my GCT sisters in our private group:
Good morning, Ladies!
The last month has been kind of crazy, and there were days it was hard to eat fresh because of travel or family visiting or parties, etc. Though I attempted to stick to my plan, there were days I convinced myself that a bite of dessert wouldn't hurt, a few Doritos were no big deal, that eating a few grapes was as good as a big, leafy green salad, that having a beer with a friend "just this once" would be okay.
Also over the last month I noticed my joints were hurting more than usual. I even contacted my doctor to ask, "What's going on? Why am I having these side effects after a fairly easy year with Letrozole?" It got to the place I was having trouble walking because my feet hurt so much.
It never occurred to me that the "little cheats" were having big consequences for me.
But this week life slowed down. I went to the market and got fresh produce day-by-day. There have been no parties, no excuses, no "one bites."
And guess what? I realized last night I feel so much better. My joints, though still painful, are the "normal" Letrozole painful, not the "I can't deal with this" painful.
Just thought I'd share. I guess this confirms that, at least for me, dietary choices (even small ones) seem to have a huge impact.
One Year with Letrozole- June 2024
It’s hard to believe it's been a year. On Friday, June 30, 2023, I had one last conversation about Letrozole with a caregiver at Duke before I went to CVS and picked up the prescription. I took the first dose that night.
I've chronicled my journey with Letrozole over the last 12 months. These are the links:
How do I feel after a year? I have to say that the joint pain, particularly in my feet has increased substantially in recent weeks, but, overall, I can’t complain. I’m just moving a little more slowly and with a little more difficulty than before.
One of the potential side effects of Letrozole is bone density loss. My next DEXA scan will be on July 24. If there is no evidence of bone density loss, I will most surely continue with Letrozole. If there is evidence of significant bone density loss, Dr. Rossi and I will have to decide together whether to continue with Letrozole or change the method of treatment for me.
Am I happy I chose to take Letrozole? The answer is a definite yes. All in all this year with Letrozole hasn’t been that bad, definitely not as bad as so many of the warnings would have indicated. There is currently no evidence of disease in my body, and that was the goal.
I have my next CT scan in August, and I'm anticipating to another great report.
Until then I will continue to make healthy food choices, take the advised supplements, and keep moving (the best therapy for the aches and pains in my joints and muscles).
The privilege of compassion
Suffering hadn’t shrunk their hearts, you see. It had expanded their capacity for compassion. The more stories of suffering I hear, the more I understand that our humanity places each of us on a spectrum of suffering...
Our experiences of suffering are best leveraged when they make us more aware of other people’s pain.
Suffering grants us the hard-won privilege of compassion.
Katherine Wolf, Treasures in the Dark
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.