6 months with Letrozole

Tomorrow will mark 6 months since I took my first dosage of Letrozole, and whether or not it is working remains to be seen. Hopefully we’ll know more when I go back to Duke January 8 for a CT scan, labs, and an appointment with Dr. Rossi.

Since I’ve tried to chronicle this in hopes of helping someone else considering whether or not to go on Letrozole, here are links to two previous posts on the same subject.

Looking back at the 90 Days post and comparing that with today, I would say:

1. Fatigue and insomnia are still issues, and I still try to get a nap in most days, as well as going to bed early each night.

2. Neuropathy, muscle, and joint pain, are all still issues, and some days are worse than others. But, again, I want to emphasize, it’s all bearable. I find the best way to keep pain at bay is to keep moving and not sit for too long. I go to the beach every morning to run/walk, and I think that really helps.

3. Hot flashes, night sweats, dizziness, and edema seem to have been resolved.

4. My weight has stablized at roughly 10 lbs. less than it was pre-surgery.

5. I have a noticeable bald spot that keeps growing on the right side of my head, but I’m going to guess that Ashley (who does my hair) and I are the only ones who really see it. It’s easy to hide.

At this point, I’m still glad I chose to go on Letrozole, and I am hoping for positive news when I see my physician in a few days.

How are you feeling, and what’s next?

These are the two questions I am asked on a regular basis recently. And here’s how I respond.

First, I’m feeling so much better than could have been anticipated given all that transpired this summer. I don’t feel great, but I don’t feel terrible, either. I’ve told several people most days feel like the day after running a marathon. If you’ve done distance running, you know what I mean.

The morning after a long run, you don’t feel great, but you also don’t lie in bed all day and complain. You just get up and do what you need to do, albeit a little more slowly and with some pain and stiffness (especially if you sit down for too long).

Second, unless something new comes up, I can breathe and relax until January. On January 8, I am scheduled for a CT scan (my first since February 2023) and blood work.

So, between now and then, my plan is to not borrow trouble from tomorrow and live each day as it comes, by God’s grace.

Thank you for all of your prayers and encouragement!

Can all your worries add a single moment to your life?

And if worry can’t accomplish a little thing like that, what’s the use of worrying over bigger things?

Luke 12:25-26

Because I decided in March I was going to share this journey…

Here we go. I’ve gone back and forth about whether I was going to share this, but I’m going to put it out there . . . even if it turns out to be nothing . . . because it’s part of the journey.

---

Back in February when my recurrence was diagnosed, a thyroid nodule was noted on the CT scan. In all that transpired after that before finally having surgery in May, that little "concern" was put on the back burner.

Recently I realized, "Hey! That was never addressed. And hey! You've got to watch out for yourself because no one else is doing that for you."

So . . . a few weeks ago, I saw my PCP. He looked at the scan and suggested I see an ENT for an ultrasound of my thyroid. I finally had that appointment today.

Though I have a number of nodules (which is common), there is one large one which is solid with substantial intranodular blood flow that is "concerning." Therefore, I will have a needle biopsy on September 26.

The ENT was incredibly kind, and he wanted to make sure "this won't push you over the edge." He reminded me not to be worried until we have cause to be worried. So that’s what I am going with.

There’s nothing to worry about until there is something to worry about.

So how did I end up jumping off a bridge in Oregon?

There’s really not much to tell. I had said this was The Summer of This Time, not Next Time, and on Sunday as Rick and I were driving back to Portland, we passed PS Ogden State Park where we’d stopped on the way into Redmond on Friday.

Rick noted that people were bungee jumping off of one of the bridges. We had already driven past when he asked, “Do you want to go bungee jump?” At first, I felt indecisive - not from fear of heights, but more of “What if I get up there and can’t make myself jump off?” We were still driving down the highway when I said, “Yes! Let’s do it!” so Rick did a u-turn, and we went back.

We had to wait for a few people to do their jumps in front of us, including one lady who has jumped many times and one girl who just couldn’t bring herself to jump so she gave the guys permission to push her off. That was comforting to me because I knew that if I couldn’t mentally get myself to jump, the guys working would “help” me.

But as you can see from the video, I had no issue whatsoever walking out, stepping on the X, and jumping after the 1 - 2 -3 countdown.

It was an amazing sensation, and something I would definitely like to do again.

After the fact, we found out this is the tallest commercial bungee jump in North America, so I am thinking we might need to start chasing down some bungee jumping on other continents. Just an idea . . .

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 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.”

— Rebecca, This is Us

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.

Not what we were expecting

I had two CT scans and a PET scan prior to last week’s surgery, so we were fairly confident about the extent of the cancer’s spread and what was needed in order to remove that. As you know from previous posts, surgery went really well, and my recovery has been far easier than expected.

This week I received the pathology report. Overall, sections A - D of the report were positive - either noting absence of malignancy in the sample taken or noting successful excision.

However, the report did note two additional GCT tumors that were not defined by scans, and, unfortunately, it also included the following information regarding the left anterior abdominal wall resection:

This information is concerning and will likely result in difficult decisions in the near future.

Dr. Rossi has asked that my case be presented at a Monday morning conference. Once the team talks about my surgery and pathology, they will contact me regarding recommendations for a plan to go forward.

This morning my thoughts are set on Psalm 90:12, and I ask that you pray that we may have wisdom in deciding how to approach this new hurdle.

“So teach us to number our days, that we may present to You a heart of wisdom.”

— Psalm 90:12

Thank you for showing up

It would be impossible to enumerate all of the acts of kindness and love you have expressed in recent days. I am incredibly grateful and overwhelmed.

I have seen many of you living out the truth of I Corinthians 12:28.

“And in the church God has appointed first of all apostles, second prophets, third teachers, then workers of miracles, and those with gifts of healing, helping, administration, and various tongues.”

Thank you for using your various gifts to invest in my life. I feel so loved.

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!

What's helpful … and what's not

A few friends have asked me “what’s helpful and what’s not?” right now. I want to start out by saying everyone is different and responds differently to things, but after speaking with a number of other ladies, here are a few things that are helpful - and a few that are not - to us.

1. Surprises without expectations. Gifts are not usually something that speak to my heart, but recently unexpected surprises in the mail and on the front porch have been encouraging. Opening the door and finding something on the doorstep - something that was left without the doorbell ever ringing - those surprises truly mean something to me because there have been a few days I don’t know if I would have opened the door had the bell rang.

From a friend on her own journey with cancer:

“Offer to take your friend to chemo, or go with her to a doctor's appointment.

Have a girls’ day out where you go to the beach /lake together or go out to eat. Send a care package.

One of my best friends sent me a blanket, ginger chews, and a salt lamp. It was so caring and thoughtful.”

2. Words of encouragement. April sent this message to me recently, and it’s one I’ve saved and will go back to repeatedly.

Sometimes when our physical strength wains, all we have is our mental strength. Know that, whatever comes your way, you have the mental strength and the tenacity to keep going.

The three simple yet profound words my family keep saying to me as I was battling cancer was, “You got this!”

Becky, I know you got this! Keep putting one foot in front of the other. Do the next thing that you have to do and think of only that, until it’s time to do what comes after that.

I will keep you in my thoughts and prayers. 🙏

3. Companionship. Lunch dates and walks around the park are wonderful distractions as I wait for my surgery date.

4. Suggestions of what you want to do to help versus “let me know if I can help sometime” are helpful. For example, Joyce said:

I would love for someone to say, “Is it okay if I bring you dinner on Friday night?” instead of saying, “Let me know if I can bring you dinner one day.” I might never take you up on a general offer, but when you ask me about a specific date, that helps me focus and decide on a time that works.

5. Listening is always appreciated. Unsolicited advice and suggestions … not so much. Questions can feel overwhelming at times, but thoughtful questions are encouraging. Please be satisfied with what I am willing to share with you instead of pressing me for more information. From a friend:

“Listening and humor. These are two things that really help me.”

Lilli said:

“I need someone to talk to who understands some basic information about the type of cancer I have, who cares about what I am going through, and will listen to the fears I can’t share with my family.”

6. Understanding that each cancer and each person's experience are different. In one of the groups where I am a member, Hannah shared:

“I wish people would Google GCT and understand its uniqueness instead of comparing my illness to someone else’s. I’m not your mom or your aunt, and my situation is different.”

7. Assume that I have done my research, lived a healthy lifestyle, and made smart choices instead of asking if I have 1) taken this or that supplement, 2) used this essential oil, or 3) eaten this particular diet. From another patient:

“I didn’t do anything to bring this one myself. I didn’t miss doing anything, either. According to my doctor, this is genetic, it’s luck of the draw. It hurts when friends ask me if I did or didn’t do something in the past . . . or tell me by taking a certain vitamin I can be healthy in the future. It’s not that simple. Can you change the color of your eyes by rubbing an essential oil on your eyelids?”

8. Texts that aren’t trite or overly spiritualized are encouraging.

One of my favorite texts from a friend:

“Had you on my mind this morning. No verses or scriptures. Just wanted you to know I was thinking and praying about you in my quiet time.”

9. Finally, don’t let the above make you afraid to reach out. According to Anna,

”Just check in. Say hi. Text. Call. Write. Whatever you can do. I found some people were scared they didn’t know what to say or how to say it, and so they didn’t say anything. Some just disappeared from my life during my cancer treatments at the time I needed support most, and that was sad to me.”

I agree with Anna.

Friends, more than anything it doesn’t matter what you do or say when it comes from a heart of love. What matters is that you show up, that you care, that you understand that you truly can’t understand, but, please, don’t let that stop you from trying.

A recent lunch date with friends encouraged me greatly.

This is actually happening

My appointment at the Duke Cancer Center yesterday went as well as I could have possibly expected. I walked away with a firm plan, as well as confidence in the surgeon who will operate on me May 2.

I consented to a much larger surgery than originally anticipated, but the surgeon’s reasoning lines up with my goals for the future. I am at peace with the following:

• Exploratory laparotomy

• Total abdominal hysterectomy

• Left-salpingo-oophorectomy

• Debulking (removal of visible tumors)

• Abdominal wall resection

• Possible bowel resection

• Possible ostomy

Actual surgery time will be set the day before the procedure. Expected hospitalization ranges from two days to one week.

At this point my medical team and I are in agreement that I will not have chemotherapy after the procedure, but if biopsies of different tumors reveal anything other than GCT, there is still the possibility that chemo could be warranted.

So, yes, there are still many questions about the future, but I do feel that I have finally found a firm plan with the expertise needed for my unusual situation.

A quick update

1. I had more bloodwork today - a new test. It’s a good thing I have good veins. I’m giving blood frequently these days.

2. The conversation with Dr. J in Australia was encouraging and productive. Because of that phone call, it is the current “new plan” to forego chemotherapy because there's no real evidence it actually has any measurable benefit in preventing recurrence of GCT.

3. I’ll have a mammogram, ultrasound, and biopsy tomorrow.

4. I have canceled surgery for April 14 here in Wilmington because…

5. I have an appointment at Duke on Monday, and I hope to schedule surgery at Duke in the near future.

6. All of this just moves me one step closer to resolution and a firm new plan.

So, what’s the plan?

March 30, 2023

I thought we had a plan. And we did. But now we don’t.

When paired with new information from the PET scan, the plan we had in place looked less and less like a good plan and looked more and more like an outdated one. As I have been reading clinical research articles and talking with other GCT patients and seeking advice from medical professionals, it has become clear that I should not have surgery on April 14. The idea of chemotherapy is also being called into question.

Sunday evening, 9 p.m., I’ll be talking with a doctor in Melbourne, Australia. I’ve received a referral to Duke. I’ve also got an appointment with MD Anderson in Houston in May (if I choose to wait that long).

All the questions - again. None of the answers.

Thankful for time away here in Texas to put my mind to other matters, and trusting that God’s perfect plan for me will become clear as I continue to listen and discern.

I will trust, as Job did, that my God knows where I am going, that His plan for me will not change, and that He controls my destiny. (Job 23)

When my heart is overwhelmed

I cry to you for help when my heart is overwhelmed.

Lead me to the towering rock of safety.   Psalm 61:2

As I shared things with people via text yesterday, many asked, “How are you?”  and  I replied:  “Overwhelmed” more than once. 

This morning, the Lord brought the phrase “Lead me to the Rock that is higher than I.”

I searched out the verse and in Psalm 61 (NLT) the word “overwhelmed” is used.   Over and over I am seeing glimpses of God in my days and interactions.  He will lead me to the place of safety.

This morning I am claiming David’s words as my own:  “I will not die; instead, I will live to tell what the LORD has done.”  Psalm 118:17

I am ready to fight.