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.

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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!