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

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.

Thoughts from Robert Brault

Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic?

Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard?

No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.

Robert Brault

The April 22 appointments

I had three appointments at Duke on April 22. Here’s a quick update.

My first appointment was with Dr. Rossi at 10:30 a.m. We had a great visit as we talked about the present - and the future. I’ll have a CT scan at my next visit.

Then I went to the lab at 11:30 to test Inhibin A, Inhibin B, AMH, and to do a CBC.

These results were almost instant. We have no idea what was causing the low RBC Count before, but my RBC Count is fine now.

Then Rick and I had lunch at Pure Vegan, per the usual.

Cardiology was at 2:30 at the Raleigh location. It was a positive visit with Dr. Deepa Upadhyaya. She’s confident I do not have any major heart issues. She believes the accelerated heart rate I am experiencing when exercising might be a neurological result of the surgery last year, but just to be safe, she wants me to return for an exercise stress echocardiogram in July.

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And today I received this amazing news. 🙌

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I'm NED!!

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Next up?

DXA Bone Density (to make sure Letrozole isn’t having an excessively negative effect on my bone density) and the ECHO Stress test -July 24

CT with contrast/ Dr. Rossi - August 12

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Thank you to all of you have who been faithfully praying for me on this journey!

Nutrition and Lifestyle

A number of you have reached out recently to check in since I haven’t posted anything new since the January appointment. I haven’t posted anything because there’s nothing new to share. And that’s a really good thing!

Surgery went so well last year, so it’s likely I’ll be in this period of waiting between 3-month appointments for some time. GCT tends to be a marathon, not a sprint.

And, ironically, I’m running the Wilmington Half Marathon tomorrow because, truly, I feel great!

It has now been over a year since my recurrence was diagnosed, and consistently I hear from people things like, “You look great” or “You seem to be doing so well.”

And it’s true. I am doing so well.

The conversation then often turns to questions related to what I am eating and what lifestyle changes I’ve made in the last 12 months.

It is my opinion that the subject of nutrition and lifestyle is a complicated one, and I believe what is best for one person’s body is not necessarily what’s best for another person. However, this is where I am currently. I’m all about consistency, so it’s easy for me to share with you my typical routine.

1. I still have one cup of regular coffee every morning. The one change I have made is that I now put just the tiniest splash of half and half in it - no creamers, not even all-natural creamer.

2. I have a heaping tablespoon of almond butter (no added sugar or salt) every morning as my first food. Always. I even found some great individual packets that I can slip into my computer bag while traveling.

3. I do 30 minutes of weights, stretches, and yoga.

4. Then I go for a walk/run for 60 minutes or more depending on what my training schedule has for the day.

5. I come home and eat a banana, a couple of teaspoons of plain yogurt with a tablespoon of Seven Sundays Rise and Shine Mix. I also drink a ginger shot from Trader Joe’s most mornings.

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The rest of the food I consume regularly can be characterized by these “rules”:

• No pork, beef or poultry

• Lots of fruits and vegetables

• Minimal gluten, dairy, sugar or processed foods

• Though not food, supplements are a big part of my nutrition routine.

I have chosen to eat the way I eat and exercise the way I exercise because it’s a healthy lifestyle - whether or not one has cancer. I can tell you, though, it’s a lot easier to stick to the program knowing what I now know. A brownie isn’t really a temptation, and I don’t look for excuses for not exercising.

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I go back to Duke April 22. Hopefully there really won’t be much to say after that appointment, either.

Until then I’ll continue to enjoy fresh produce that’s available year-round while eagerly anticipating fresh-picked strawberries and blueberries that are coming soon!

Supplements

I have been asked repeatedly about what supplements I am taking, so I decided to share the list here as a reference for the future.

Let me start out by saying I am not endorsing any of these supplements, nor do I necessarily believe any of them are necessary to my well-being. What I do know is that I am doing so much better than anticipated; therefore, I will continue taking these supplements for the foreseeable future because I do not want to change anything about this routine which seems to be working for me.

Further, I do believe nutrition from real food is better than any supplement, so I am careful about what I eat daily. I’ve eliminated meat from my diet, and I have minimized dairy, sugar, processed food, and gluten, though I have not entirely eliminated them.

Also, I believe exercise has a significant impact on the way I feel day-by-day, and so I am committed to daily cardio and weight-bearing exercises.

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These are the supplements I currently take in the morning:

1. B Complex Plus with Choline from Seeking Health

2. Vitamin A 7,5000 mcg from Klaire Labs

3. Vitamin D 1,000IU from Thorne

4. Vitamin C Version 3.3 from Vibrant Health

5. Multi Collagen Plus from Dr. Emil Nutrition

6. Turmeric Curcumin 1500 mg from Bio Schwartz

These are the supplements I currently take in the evening, along with my medication:

1. Melatonin-SR from Pure Encapsulations

2. Magnesium (glycinate) from Pure Encapsulations

3. Letrozole 2.5 mg

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Above and beyond all this, I truly believe Proverbs 17:22:

A joyful heart is good medicine, but a broken spirit dries up the bones.

And ultimately, that’s the game plan - to keep trusting the Lord and finding joy on this journey day-by-day.

The Lord has dealt graciously with me

To say that I am happy and relieved to finally have this result on the thyroid biopsy is an understatement.

September 25 at Duke

As many of you are aware, I went to Duke September 25 for three appointments.

I’m going to start out by reiterating what I’ve said before. The standard of care at Duke is phenomenal. If I have to be a patient, I am thankful to be a patient at Duke.

8 a.m. Labs

• Inhibin A

• Inhibin B

• AMH

I was seen on time, had a pleasant conversation with the woman drawing my blood, and was out the door in less than 10 minutes.

9 a.m. Dr. Rossi and Dr. Patel

This was a routine appointment since I don’t have any major complaints and labs were done for the first time post-op just an hour before.

We talked about the need for routine monitoring, and we agreed on doing a CT scan for January. It’s likely I’ll have CT scans every 3-6 months and blood work every 3 months for the foreseeable future.

On my way to Duke for the first time back in April, I had my first Detox Island Green smoothie from Tropical Smoothie. I drank quite a few of those same smoothies while in the hospital after surgery, and because there’s a Tropical Smoothie in the Duke Cancer Center, I now feel like this smoothie is just a needful part of the whole routine.

1 p.m. - Thyroid Biopsy

So, no one warned me. A thyroid biopsy is no joke.

I’m not kidding. The biopsy was more painful than anticipated, though in the grand scheme of things it doesn’t even compare with some of the things I’ve already done. Part of the issue was the Lidocaine did not work the way it was supposed to, plus they needed to go in three times - the 3rd time with larger needle. And I felt pain every single time they punctured the thyroid.

After they’d gone in the 2nd time and decided they need to go in a 3rd time, I had to ask for a short break to gather myself because I really thought I might pass out. Thankfully, I did not, and on the 3rd attempt they got an adequate sample.

Results

I waited to share this post until I had all results back.

• Inhibin A - lowest number we’ve seen since I was first tested in 2019

• Inhibin B - lowest number we've seen since I was first tested in 2019

• AMH - - lowest number we've seen since I was first tested

• Thyroid Biopsy - indeterminate. Being sent for further testing.

90 days with Letrozole

When I made the decision to begin taking Letrozole, both my physician and a number of women who are on the medication told me to expect:

• Neuropathy in my hands and feet

• Muscle or joint pain

• Hot flashes

• Night sweats

• Edema

• Dizziness

• Weight gain

• Loss of appetite

• Digestive issues

• Hair loss

• Insomnia

• Fatigue

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Thus far, my experience with Letrozole, however, has been fairly easy, and given the potential for positive results, I am thankful that this is the treatment option Dr. Rossi and I agreed upon together. Of course, we won’t know about bone density loss for some time, but I am under the care of an endocrinologist who plans to monitor my bone density yearly, and for that I am thankful.

If I had to rank these side effects in order of how they have affected me, it would look like this:

1. Fatigue and insomnia. I have learned to take my medication no more than 30 minutes before I want to go to sleep because it definitely puts me to sleep. However, I often find myself waking up between 1 and 2 a.m., and it’s generally difficult to get back to sleep. This is probably why I often feel tired during the day, and I frequently take an early afternoon nap.

2. Neuropathy in my hands, feet and legs. I have experienced muscle and joint pain, as well, though not so much as to keep me from exercising. In fact, exercising has been my coping mechanism when it has been bad. Some days are worse than others, and mornings are generally worse than other times of the day. But it’s all bearable.

3. I’ve had my fair share of hot flashes and night sweats, but they’re more annoying than anything else. And, of course, I’d be having those anyway, even if I weren’t taking Letrozole.

4. Edema has been the latest annoying side effect. It’s becoming uncomfortable to wear my wedding band some days. But on other days, I don’t feel like I am swelling at all. I can not identify a pattern or causation. The edema I have experienced seems to be random.

5. I have not gained weight. In fact, I’ve been steadily losing weight. I think this is because of the diet I am choosing to eat (think rabbit food) and the fact that many days my appetite is less than it used to be.

6. Dizziness. I have low blood pressure, so I can’t say if this is any worse than it’s been before.

7. Digestive issues. I have not had many digestive issues, but I attribute that to my diet more than anything else. I have become a big fan of a cold pressed ginger juice with cayenne pepper, and exercise surely helps, as well.

8. Hair loss. I’m definitely experiencing this, though so far I think I am the only one who has noticed it. Again, this was to be expected after surgery, so I can not attribute it directly to Letrozole.

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I share this information in hopes of helping someone else who is debating whether or not to go on Letrozole. As I have said before, each woman’s experience with GCT is different. This might not be the right option for someone else, but, for now, I believe Letrozole is the right option for me.

A slight change in plans

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For those of you who have inquired and are praying, here’s an update.

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I was able to get my thyroid biopsy moved to Duke on Monday, September 25, the same day I will have my first post-op labs and my 2nd post-op appointment.

Labs are at 8 a.m. I’ll see Dr. Rossi at 9 a.m. And then I will have the thyroid biopsy at 1 p.m.

That’s a quite a bit for a single day, but it definitely beats driving back and forth to Durham a second time, and it also assures all of my care will be at Duke and nothing can be lost between practitioners.

Thank you for caring and praying!

Good reminders and a beautiful sunrise

Walking the beach, listening to Craig Groeschel share the Word this morning.

A few gems:

• The providence of God is best viewed backwards.

• I want to remind you of the goodness of the God Who is able and Whose plan is always better.

• So if you're stuck in the in-between, stay faithful to God.

• While you are waiting, God is still working.

Groeschel referenced this passage of Scripture, a favorite of mine:

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Ephesians 3:20-21

You can listen to the whole sermon by clicking on the link below... or listen wherever you listen to podcasts.

It’s a delicate balance

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.

Functional Medicine

According to The Institute for Functional Medicine,

Functional medicine is a systems biology–based approach that focuses on identifying and addressing the root cause of disease. Each symptom or differential diagnosis may be one of many contributing to an individual’s illness.

For example:

One of the physicians who treated me this spring and affirmed my going on Letrozole also urged me to look into functional medicine to broaden my perspective on health and healing. Therefore, I have established care with a local practitioner.

Thus far, I have had one virtual appointment, one in-person appointment, blood draws that yielded 6 pages of results, and a recommendation to begin taking a number of supplements.

And honestly, at this point, I am not sure what my opinion is on it all.

My blood work was largely “unimpressive.” No one thing jumps out as being problematic. In fact, of the 84 results given, only 4 were outside of the reference interval -and only marginally so, at that.

The practitioner recommended adding some supplements to those I was already taking, so now my daily intake includes vitamins C, A, and a B complex, magnesium, melatonin, turmeric, and collagen with biotin, plus a-Drenal.

The bottom line is this. I do not expect my functional care practitioner to have the panacea, but at this point I feel like what she’s recommending can’t hurt, so I am willing to combine her recommendations with traditional treatment and a healthy lifestyle that includes physical activity and conscious eating.

The Fueled by Faith Podcast

I recently had the opportunity to talk to my friend, Emily, on her podcast - Fueled by Faith. Though the conversation was not what we had planned, we believe it is exactly what God intended for us both on a morning when we were both clinging to the promise of Psalm 73:26:

My flesh and my heart may fail, but God is the strength of my heart, and my portion forever.

Even when I don’t feel like it

Truth be told I’m not exactly enjoying my morning walks right now. I feel tired. I feel heavy. I don’t feel motivated to “do” anything.

But every morning I get up, I get out the door, and I go to the beach. No excuses.

Why?

Because I am sure there will come a day when I can’t do certain things, but that day is not today. There’s a big difference between “I don’t feel like doing that” and “I can’t do that.”

Yesterday I told a friend, “I am going to live until I die.” He laughed, but it’s true. I am not going to stop doing things until I absolutely can’t do them anymore, and that includes my morning walk.

So that’s my encouragement to you today. Get out there and do the thing that you can do, even though you might not actually feel like doing it.

You’ll be glad you did.

These views are worth it.

So, what’s the latest?

First, I want to say I feel amazing, and if I didn’t have these scars on my abdomen, I wouldn’t know anything unusual had happened earlier this summer.

Truly there’s not much to tell, and there probably won’t be for a while. As I have said over and over, this is a marathon, not a 100 yard dash.

Back in March when I started writing this blog, I was facing laparoscopic surgery, then chemo, so I was anticipating a rough summer.

Obviously those plans changed drastically in April when I switched practitioners and went with open abdominal surgery and no chemo.

In May I went into surgery with the knowledge I could come out with an ostomy. Thankfully that wasn’t the case. I was also told to expect weeks of recovery from surgery. That was also not really the case as I felt like I was “up and running” by the 2nd week.

In June I had my post-op appointment where Dr. Rossi and I talked about the benefits and the drawbacks of going on Letrozole.

And now in July I’ve been dealing with some of the new normal that’s come with that, though, once again, reality has been so much better than the projected scenario. None of the side effects I’m experiencing on a daily basis are of any great consequence at this point (mild, sporatic neuropathy, insomnia, fatigue, mild joint pain). If I weren’t on a medication and I was experiencing these symptoms I would just think, “Well, this is what getting older feels like!”

I am in the process of establishing secondary healthcare with a functional medicine practitioner, and my next appointment with Dr. Rossi will be September 25. Though that is a few weeks later than she had requested, trying to line her schedule up with my schedule wasn’t easy.

Getting established with a functional medicine practitioner looks like this - extensive lab work. I gave all of these samples this morning.

So September 25 it is. And I was able to get an appointment at Dr. Rossi’s Raleigh office versus at Duke, so that’s something to be thankful for, as well, as it will save quite a bit of time.

I have enjoyed my summer of This Time, Not Next Time immensely, and I am so glad I decided to take the time to do my daily morning walks at Wrightsville Beach when I am home and not traveling.

Thanks for following along here, for sending texts, for forwarding words of encouragement.

The summer is not over yet, and there are still some fun things to do in the weeks ahead. I am especially looking forward to this weekend. More on that later!