One week with Letrozole
After much research, debate, and prayer, on June 30 I picked up a 90 day supply of Letrozole from the pharmacy, and I dove in, taking my first dose about 6 p.m. that evening.
By 8 p.m. I couldn’t hold my eyes open any longer, and I slept through until about 4:30 the following morning.
Here’s how the rest of the week went:
July 1, Day 2 - Woke up a little achy and feeling like I have jetlag, but after walking for an hour at the beach, I feel back to normal. Rick and I drove to Fort Caswell and biked for almost an hour later in the day. I felt tired this afternoon and napped.
July 2, Day 3 - I woke up groggy and with minor pain on the bottoms of my feet. I would compare it to how my feet feel after a long run.
July 3, Day 4 - Definitely think the meds make me drowsy. I need to take the pill no more than 30 minutes before I go to bed. Still experiencing pain in bottoms of my feet.
July 4, Day 5. No noticeable side effects when I woke up. Slight neuropathy in feet at different times during the day.
July 5, Day 6. No noticeable side effects when I woke up. However, Rick and I traveled from Wilmington to Portland, OR, today. A great deal of neuropathy in my feet as the day went on. No amount of walking or standing helped, though I walked laps in both ATL and SLC during layovers.
July 6, Day 7. No noticeable side effects when I woke up. No side effects throughout the day.
July 7, Day 8. No noticeable side effects when I woke up. However, after taking a morning hike, I came back and slept seven hours … until roughly 1:45 pm. I can't say for certain it was the Letrozole, but anyone who knows me knows this isn't normal.
I'll post another update after more time passes. However, if this is the extent of the side effects I’ll be experiencing, they are definitely manageable and worth the potential benefit for me.
Time will tell.
Medicine is considered a kindness from God. - Kayla Sanders
The gift of music
I have never known a worship leader who has as much passion and joy as Alex Tomlin, and I am so thankful for him. He doesn’t just sing with his mouth. He sings with his heart.
It doesn’t matter how I’m feeling when I come to The Bridge. It only takes a few minutes for my heart (and often my eyes) to be full as the church worships together.
My morning walks at Wrightsville Beach include quite a bit of Maverick City Music, and I was introduced to most of those songs because Alex put them on the list for The Bridge.
Alex probably doesn’t know it, but he’s been a significant part of this journey for me (both before surgery and during recovery), and I appreciate him and his wife, Ti, more than words can express.
A line in the sand
Today marks two months since surgery.
I was thinking on that this morning as I walked at the beach, and I decided, “Today is a line in the sand. Recovery from this recurrence is behind me, and I’ve made all the necessary decisions related to it. Now I am simply going to focus on the future.”
And, as if on cue, this song from Maverick City Music came up on my playlist:
You don't have to worry
And don't you be afraid
Joy comes in the morning
Troubles they don't last always…
With Jesus I can take it
With Him I know I can stand
No matter what may come my way
My life is in Your hands
What a perfect way to start a Sunday morning!
A quick update
I know it’s been a while since I have given an update, and that’s because I have been waiting until I actually had something concrete to say. But this entire process, truly since the beginning, has moved painfully slowly.
After sharing the following with family this morning, I decided to share it here, too - even though there’s not much to tell.
I am doing a lot of reading about Resveratrol which is found in many foods like dark grapes and blueberries.
I am having a very hard time getting answers from Duke about the implications of my Foundation test and my bone density test, and the longer this goes on the more inclined I am *NOT* to go on Letrozole. I was told yesterday that Duke could not get me in with an endocrinologist until DECEMBER. There's no point in seeing the endocrinologist (re: going on Letrozole) if I have to wait until December. Our health care system is a mess.
Have a great Wednesday. Love you.
I ask you all to continue to pray for wisdom. I do not have peace about going on Letrozole without getting concrete answers about the implications of Foundation testing and the DXA scan.
Choosing to hope for the good
The forecast wasn’t good this morning when I woke up. The chance of rain was high, the skies here at home were dark.
But I love to walk at the beach, and I decided to take a chance and drive down there - even if it meant I only had the opportunity to walk for a short time.
When I arrived, I took these two photos - while standing in the exact same spot.
I then walked for over an hour on the sand, and not one drop of rain fell.
Walking north, this was my view.
Walking south, this was my view.
The sky didn’t change between photos. What changed was my perspective, my focus, where I chose to look.
Isn’t this often how life is? Where I look determines what I see. My circumstances in life haven’t changed, but where I decide to focus my thoughts can change everything.
I can choose to believe the best.
I can choose to see the beauty around me.
I can choose to hope.
I can choose to praise.
I can choose gratitude.
One translation of Proverbs 4:23 puts it this way:
“Be careful how you think; your life is shaped by your thoughts.”
Before surgery I shared with friends that based on all that I had read, roughly 6 weeks after surgery, after I had physically healed, I would probably start to experience some depression.
And this week, I can see that is true. The battle of the mind is real. I am daily having to choose to focus on what is good and true and worthy of praise.
So for those of you who are asking how to specifically pray for me, this is my request:
Pray that I will continue to choose to rest in Hope and believe that His ways are good - even when the rain starts to fall.
Adventures begin when plans end
We had plans to go to New Orleans this weekend. But then we couldn’t get a plane ticket.
So we shifted gears and made plans to go to Maine. We had plane tickets, but then the flight out of RDU was cancelled… after we were already in Raleigh.
We pivoted again and drove to Crossville, TN, where we’ve had a lovely time exploring God’s creation.
Sometimes you have to make the best out of the situation in which you find yourself, remembering that we can make our plans, but the Lord directs our steps (Proverbs 16:9).
Last night’s dinner at a sweet little restaurant called Nicoletta’s was a reminder of that.
The summer of this time, not next time
And he said, "Someday I hope you get the chance
To live like you were dying. " - Tim McGraw
Despite how much I love Tim McGraw, I have not been skydiving, Rocky Mountain climbing, or 2.7 seconds on a bull named Fu Man Chu.
But so far Rick and I have done some really fun things on these summer weekends - trips to Kiawah Island, the Virginia Creeper Trail, and Long Island/Block Island.
I am going to affirm McGraw’s sentiment, however, when I echo: “Someday I hope you get the chance to live like you were dying.”
Saying yes to this time and not waiting until next time is really, really fun.
This season has its hard days, but it has its beautiful ones, as well.
Oh, and guess what? We’re planning to be off on another adventure this weekend! I can hardly wait!
The gift of mentors
I’ve mentioned this before. I love the Peas and Carrots Podcast and listen every Wednesday morning on my walk.
The hosts, Brian and Kayla Sanders, may not realize it, but they are mentoring me week-by-week. Their discussions have caused me to think deeply on a variety of matters through the years, and I appreciate their humble, thoughtful approach to different topics.
This morning as I continue to struggle through important health care choices, their podcast spoke directly to me. And for that, I am thankful.
The big takeaway:
Medication can be a kindness, a mercy from God.
When the choice is not clear
As I was parking at Wrightsville Beach this morning, I ran into someone I haven’t seen since surgery. She gave me a hug and asked how I was doing. I got emotional in the moment, and that really confused me.
It took me some time walking at the beach before I realized why I got teary-eyed. I am thinking constantly about whether or not I should go on Letrozole, and I think that’s causing me more anxiety than I realized.
Up until this point, the “next step” has been pretty clear. Surgery was a given. Switching my care to Duke wasn’t much of a choice. Deciding against chemo was easy after research.
But Letrozole is different. There is conflicting clinical evidence. There is conflicting anecdotal evidence among those who have used Letrozole.
There’s no easy choice here. No strikingly right answer.
I feel great right now. But we know I still have cancer in my body. Do I give up the health I currently have in order to perhaps have better quality of life in the future?
Letrozole has a multitude of harsh side effects for many people. But for some people it does not.
Letrozole could possibly keep me from developing more tumors for a substantial amount of time. Or it might not.
I am not currently at peace with going on Letrozole. But I also do not have to make that choice today. I will, however, have to make a choice soon.
So for those of you who’ve asked me in recent months how you can specifically pray, here it is:
Pray that I will make the choice that is best for me, and that once I make that choice, come what may, I will not second-guess the decision.
My June 5th Post-op Appointment
Good morning, Everyone! I want to start out by saying thank you to everyone who reached out yesterday to check in, knowing I had my post-op appointment.
The appointment went as well as could have been expected. I really appreciate the team at Duke. Dr. Rossi has a wonderful ability to tell me the things I need to hear in a way that I can accept her recommendations. I know she has taken into account my thoughts on the matter.
We discussed at length the reality that 1) this was not my first surgery for GCT, 2) I had multiple malignant areas in my abdomen on May 2, 3) malignancy is likely to recur in the future, and 4) management is limited due to the unpredictable nature of granulosa cell tumor.
There is no perfect solution.
However, given where I am right now, we have decided that combining the drug Letrozole with routine testing and monitoring would be the best option.
No, I do not want to be on a prescription medication long-term, but taking all factors into consideration, Letrozole would seem to be the wisest course, even with all of the potential side effects that could come with it.
I have been researching Letrozole for the last month, discussing pros and cons with other medical professionals as well as women like myself with recurrent GCT.
If Letrozole works, it could hold the cancer at bay for a substantial length of time. If it does not, we can move on to other options.
Further, Dr. Rossi and I discussed my plan to continue being active and choosing the best food and supplement options.
In preparation for starting Letrozole, I will have a DEXA scan (bone density test) on June 16 in Raleigh, just to be certain I am at a good baseline for starting this medication as it could reduce the strength in my bones.
Again, there is no easy answer, but I am thankful I have choices. I am thankful for modern medicine. I am thankful for good health insurance that allows me to pursue multiple options. I am thankful for a community that has surrounded me and keeps showing up in so many ways to encourage me.
And I am thankful to know true Hope.
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!
The gift of this morning
We can make our plans, but the LORD determines our steps. Proverbs 16:9
I had a schedule today. I was going to go to Wrightsville Beach and walk for an hour and a half and be home by 8.
That didn’t happen.
Instead, the bridge went up as I was walking down, so I had to wait for that.
Because I waited for that, I was walking near the Loop a little later than expected, and as if on cue, a fox popped out, crossed my path, then retreated to the undergrowth to watch me from there. And I stopped to watch him, too.
I didn’t get a photo of him, but moments later I saw this bird, and I had to get a picture. I love seeing creatures while I am out walking in the morning.
That slight delay meant that I crossed paths with a friend a few minutes later. I haven’t seen her in a long time, and I would have surely missed her had I been on my schedule.
Walking the beach I recognized a couple from The Bridge I don’t know well, and they recognized me. After a long conversation, we were holding hands and praying right there on the sand.
Because of that unexpected encounter, I decided to head back in a different direction to save time, and I ran into friends who live on the island - friends I’ve looked for every single morning since I started walking at Wrightsville Beach, but I had yet to see. We were able to chat for quite a while, and they encouraged me so much!
This morning was a gift. I haven’t showered yet, I’m completely off the schedule I set for myself, and I am completely okay with that.
“We can make our plans, but the LORD determines our steps.”
The gift of my Haitian family
Recently the staff of Haiti Awake shared the following:
Sè Becky,
Your family from your second home, Haiti, want you to know how much we love you and pray for you. You are a gift to us from God.
Knowing you is a privilege. For the past eleven years, we have learned so much from you. Your love for Haiti, especially for Haiti Awake, is obvious.
Thank you for walking with us in every trial that we have known in Haiti, even in the midst of your own trials. Now we can walk with you.
You are in our hearts and prayers.
We love you very much.
Get healed soon!
Your family at Haiti Awake
I’ve Still Got Alot of Fight Left in Me
Initial diagnosis - May 2019
Recurrence diagnosed - February 2023
Debulking surgery - May 2, 2023
Today’s 6 mile run-walk on Kiawah Island - May 28, 2023
There is much to conquer in the days ahead, and I'm not done yet.
Like Rachel Platten sings, "‘Cause I've still got a lot of fight left in me."
The gift of not waiting for another day
One of the gifts of the last few months has been the awareness that time is fleeting and it’s my responsibility to make the most of what I am given.
For example, we live minutes from Wrightsville Beach. People spend thousands of dollars to vacation here, but I rarely take advantage of this treasure which is easily accessible to me.
I realized recently that I often think about taking my morning walk down by the water, but I always find a reason to just walk in my neighborhood, thinking, “I’ll get down there another day.”
But “tomorrow” becomes the next day and then the next, and it becomes weeks - months! years! - and I’m still walking in my neighborhood every morning.
Last week I decided to change that. And I am so glad I did because had I not, I would have missed moments like these.
Last night I watched an episode of This is Us. It’s the scene from Season 4, shortly after Rebecca finds out she’s losing her memory, when Randall and Kevin find her at the MET, staring at a painting. I love this scene so much.
“My life has been full of next times, things I always assumed I would get to eventually, but now I realize that I am running out time to do them . . . I want to make up for all of my next times.”
I’m realizing I want to choose “right now,” not “next time” or “tomorrow” or some undefined day in the future. I want to know what it means to live and not just be alive. I want to say “yes” more than I say, “No.”
I, too, want to make up for all of my “next times.”
And that starts with simple decisions like getting in the Jeep and driving down to Wrightsville Beach each morning.
Prayer Shirts
Right before surgery, I started receiving photos like these, photos of friends wearing shirts that said “Faith over Fear.” My favorite detail was the image of Haiti on the shirts. However, I had no idea where the shirts were coming from or who had started this. As time passed, I got some of the backstory, but this weekend, my dear friend, Tonya Fink, took her time to write the following.
The idea began with Greg and I trying to come up with some way that we could support you, like you did for us. We talked about going to Duke and being there for your surgery. That didn’t seem very practical since there are 8 of us;).
Greg had the idea that we should have a t-shirt made and have our family wear it and take a photo and send it to you. The wheels started turning…yes! That would be awesome! Let’s make shirts for us and reach out to Becky’s friends and see if anyone else would want to jump on the bandwagon. We’ll put on our shirts, take a photo and send it to you for encouragement.
I thought it would be amazing to have all the kids at Kay Timoun and the staff have shirts also. Before we got the idea out there, someone had already asked about paying for the Haiti shirts, although Steeve was insistent that he pay for his own! I ordered 59 shirts in that first order.
Your friend, Susannah, sent me a message asking about getting some shirts, and she referred to them as “prayer shirts”. Kinda like a prayer shawl, we’ll pray for you every time we wear our shirts. A visible reminder to pray. To my surprise, several of my friends that don’t even know you wanted to buy shirts. I had no idea why!
Let me back up and talk about the design. We really wanted the #fearisnotmyfuture and something relating to Haiti on the shirts. I have a sweet friend who is a graphic designer and when she sent me the mock up, I knew this was the one. I just needed her to add “team Becky”. The teal color was for ovarian cancer.
As I delivered the shirts, everyone had different reasons for wanting to buy the shirts. My friend, Michelle said that it was a visible way for her to share Christ. Whenever someone asked her about it, she could point them to Him! She’s the one who wanted to donate some money to Haiti Awake! Another one of my friends had been battling breast cancer. This was a way for her to show support for others battling cancer. At church the other night, a man asked me about you and your ministry. He wants more information about Haiti Awake! I just need to remember to bring him some info!
After the first wave of t-shirts, others wanted to join in. As I was at the post office preparing to ship them, a guy stopped me. He was a tough looking dude. He looked like he hadn’t had a bath in quite a while and like maybe he wanted to kill me;). I paused and told him what the t-shirts are and to my surprise, he said, “Can I have her name? I would like to pray for her!”
What?!?! That was totally unexpected. As I was checking out, he asked if he and his girlfriend could buy shirts. They were praying but, wanted a “prayer shirt”! I was reminded (once again) not to judge a book by it’s cover!
As I left, he yelled after me, “My girlfriend and I are praying for Becky!”
What started out as just a way for us to show you how important and special you are to us turned into So. Much. More!
We are truly grateful for the gift of you in our lives and hope that each time you get a photo of someone wearing their “prayer shirt”, you’ll be reminded of the impact you have had in so many lives! We love you!!
Had you asked me a month ago if t-shirts be an encouragement to me, my answer would have been, “I really don’t think so.” But what I have found, one photo at a time, is that I have appreciated this thoughtful act of kindness more than words can express.
I am so thankful for the many friends who have shown up and continue to do so in different ways. You encourage me daily.
The Unofficial Plan
In early March after the tumor board met at Novant, my Wilmington surgeon told me I would need debulking surgery (removal of visible tumors) as well as adjuvant chemotherapy.
I then requested a referral to the UNC Cancer Center because I had done enough research over the last four years to know that chemo is generally not markedly effective in stopping recurrence of the disease or extending life expectancy. However, the provider at UNC affirmed Novant’s recommendation. I accepted that and began preparing my heart and mind for surgery on April 14 followed by six rounds of chemo spaced three weeks apart.
But then I really started digging into clinical research, as well as reading the stories of other women with GCT. And I circled back to what I’ve known since 2019 - chemo isn’t a great option for my situation. I started asking myself questions like, “Why would I break down the health I currently have for the small possibility I might have added longevity in the future?”
On April 2, I talked with Dr. Jobling in Australia, and he affirmed what I was thinking: Chemotherapy is not the right course of action given where I am right now on this journey. His recommendation was surgery, then maintenance hormonal therapy (i.e. hormone suppression).
The next morning I had a telehealth call with my surgeon at Novant. I canceled my surgery with him and told him I was going to pursue other options. I did not at that time have another plan in place. . . but I knew without a doubt that I needed one. He and I had an amicable conversation that left the door open to potential partnership for my health care in the future, even if my primary care is at a different facility.
Fast forward through repeated phone calls to MD Anderson and Duke before deciding to go with Duke, fast forward through my initial meeting with Dr. Rossi and the next three weeks waiting for surgery, and fast forward through my surgery on May 2 to where I am today.
Last week, I was told there would be a conference on Monday, May 15, to discuss my care. In light of that, I sent this message:
“It is my desire to remain active and engaged in life. I want to pursue options which maximize my potential for that. Quality of life, not quantity of life, is my focus.”
I have yet to speak to Dr. Rossi directly (that will happen June 5), but this is what her nurse conveyed to me after the conference:
“Recommendation: consider carboplatin/paclitaxel though favor reserving chemotherapy for future recurrence/progression with measurable disease, versus maintenance hormonal therapy with letrozole, also could consider addition of palbociclib to letrozole, though favor reserving that combination for future recurrence/progression as well.
******
Looks like the team was open to chemotherapy, but think holding off is the better way to go at this time. Dr Rossi will review all of this and ask for your input at your post op visit.”
I was so relieved to read this because it is exactly the plan I would have written for myself based on all that I have read and heard. Yes, there might be a place for chemo in the future with recurrence/progression, but for now, I am comfortable with minimal intervention, a continued healthy lifestyle, and a wait-and-see attitude.
I am quite ready to jump back into life, and I have every intention to live my life to the fullest - without fear of the future. This journey is not over. But I am ready to embrace the next chapter.
Give it a listen
The Peas and Carrots Podcast has been one of my favorites for a while now. I look forward to the weekly episodes which drop on Wednesdays, so I was honored to be asked to share some of my story with Brian and Kayla Sanders recently.
This week's episode focuses on my current personal situation, and next week's episode will be about Haiti. You'll hear some conversation about all things British, and then our conversation starts 9 minutes in.
I hope you'll give it a listen - and make the Peas and Carrots Podcast a podcast you regularly listen to!
Moments
See the moments for what they are. They are moments. And they are fleeting.
Two weeks ago I took my first tentative steps post-op after being immobile for more than 24 hours. I was eager to get back to it, but moments into that first walk I was overcome by nausea and had to take a seat for a bit before trying again.
This morning I drove down to Wrightsville Beach and walked nearly 6 miles. It felt so good. I don’t share this to boast or so that someone will say, “You’re amazing.” I share this to encourage others.
Put in the time now, before you’re facing a crisis, so when the hard times come, you’ll have endurance, you’ll have strength, you’ll be able to carry on. You’ll see the moments for what they are.
No, these last two weeks haven’t been perfect or easy in every moment. There have been some hard moments, especially on those days when nausea was more than I thought I could handle and abdominal pain was intense.
For the record, abdominal surgery is no joke.
But looking back, those were moments that passed.
There will surely be hard moments on the road ahead, but I want to keep that in perspective. They are moments. And just like all moments in life they are fleeting.
I am encouraged by the words of David in Psalm 39:
“LORD, remind me how brief my time on earth will be. Remind me that my days are numbered— how fleeting my life is.”
Fix your eyes
I distinctly remember the first time someone shared 2 Corinthians 4:16-18 with me. I was 14 years old and doing my first real interview with a college basketball player at UNC, Steve Hale. Steve had experienced an injury that was affecting his ability to play, and he told me this passage helped him put things in perspective. Ever since that time, when I hear or read this verse, I think of Steve.
As a 14 year old, I understood the verse in a certain way, but it was a limited perspective. At 14, I did not see myself wasting away outwardly - or truly being renewed inwardly day after day.
Before my recent surgery, my dad also sent this same passage to me. And I thought about these verses in a completely different light. I am keenly aware that this body of mine is wasting away day by day, but I am just as aware that my heart continues to grow ever more fond of the Maker who designed it. And I truly believe there is an eternal weight of glory ahead.
It’s interesting indeed how the truths of Scripture hit differently at different times in life, in different circumstances, but their relevance remains the same.
People have repeatedly asked me if I am “really” okay, how I am “really” doing, and “how is your heart”? I am sure there are struggles ahead, but until this point, I can truly say, “It is well” - not because everything is good, not because I am denying the realities I am facing, not because I have any assurance that this path will end in healing, but because God, in His mercy, is enabling me to fix my eyes on more than today, to fix my eyes on the purpose in the pain.
Yesterday a sweet friend came to me before the 9 a.m. gathering at The Bridge and expressed that this blog has encouraged her. It is in moments like this that I can see the Lord is designing a purpose in this suffering for His glory, that He is writing a story beyond what I have the ability to write on my own, that He is helping me fix my eyes on the things I cannot see. I can have confidence I will see these things of eternal value as I continue to gaze in the right direction.
I am reminded of the words of the old hymn:
“Turn your eyes upon Jesus
Look full in His wonderful face
And the things of earth will grow strangely dim
In the light of His glory and grace.”