The November 13th appointment

This appointment was a bit different because for the first time, I had a midday appointment at Duke, and I drove myself. So the first thing I did upon arriving was have lunch in the adjacent food court - another first. I was happily surprised by the variety of options.

The next stop was the lab where I waited almost an hour because they were running behind schedule.

The blood draw itself was extremely quick and easy, and despite waiting an hour for it, I was able to make my next appointment without being late.

I was sure I would be waiting for a while to see Dr. Patel, so I put up my feet, ready to relax, but I was immediately called to the exam room.

The appointment with Dr. Patel was also quick and easy, and I was checking out minutes later.

The schedulers at Duke are amazing, and we were able to book my next appointment for February 14 with a CT scan, labs, and the actual appointment all at the same location spaced one hour apart.

I grabbed a Detox Island Green from Tropical Smoothie and was on the road back to Wilmington in short order.

Today I got the results of my lab work.

Glwa pou Bondye.

Reclast infusion

Yesterday I had a Reclast infusion. In July when the DEXA scan revealed significant bone density loss in just one year due to the use of Letrozole, I had a choice: stop taking Letrozole or do something to counter the negative impact Letrozole is having on my bone density. Since my August CT scan was clear (which we will assume is due in part of Letrozole), I chose to stay on Letrozole.

I then had another decision to make. Would I choose to take a weekly bisphosphonate, a monthly bisphosphonate, or a yearly infusion?
After careful thought and consideration, I chose the Reclast infusion because it seemed to fit in best with my lifestyle.

I was warned that this weekend I could potentially experience side effects, including:

• Nausea

• Vomiting

• Arthralgia

• Back pain

• Bone pain

• Dizziness

• Fever

• Fatigue

• Flu-like symptoms

• General weakness

• Chills

5:30 am The only issue I am really dealing with is back pain, which although significant, is not keeping me from going on my beach walk soon

7:30 am Back from the beach and not feeling great. Back pain. Shoulder pain, Abdominal pain. Nausea. My calves feel like they do after a marathon.

9 am I feel I have the flu.

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I spent the rest of the day in bed and never finished this post, but I woke up today (Sunday) feeling basically back to normal, so I hope the worst is behind me.

I’ll know in a year if this infusion and the discomfort that came with it was worth it.

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

9 months with Letrozole

Letrozole and I celebrated our 9-month anniversary over the weekend, and I can say, “So far, so good.” I had the thought this weekend, “Why was I so afraid of starting this?” The side effects I experienced in the beginning are no longer an issue, and my body has acclimated to the “new normal.”

The only real concern right now is that I am experiencing an excessively high heart rate (greater than 170 bpm) when engaging in moderate exercise. Because of that, I have a referral to a cardiologist on April 22, the same day I’ll see Dr. Rossi and have labs.

However, I feel fine while exercising. I am not short of breath or anything like that, so this referral is simply to rule out any issue versus being an actual concern at this point.

Here are previous posts regarding Letrozole for those who are researching it for themselves.

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!

Follow-up on supplements

I recently had labs done by my primary care physician. These were the regular, annual physical labs that include things like a Lipid Panel and a Comprehensive Metabolic Profile.

All of my results came back normal except for my Red Blood Cell count which is always low. Even my magnesium level, which was incredibly low in the past, is now normal. Other test results that were “off” before are now where they should be.

Is it the supplements? Is it the healthy eating? Is it both? We can not know for certain, but I do know that given the positive results, I’m going to continue on the road I am on.

The best is yet to be

Grow old along with me! The best is yet to be, the last of life, for which the first was made.

Our times are in his hand who saith, 'A whole I planned, youth shows but half; Trust God: See all, nor be afraid!'

Robert Browning

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.

Continue

The last two mornings at the beach have been exceptionally life-giving, and I want to hold them in my heart forever.

My wish for you

Is that you continue

Continue

To be who and how you are

To astonish a mean world

With your acts of kindness

Continue

To allow humor to lighten the burden

Of your tender heart

Continue

In a society dark with cruelty

To let the people hear the grandeur

Of God in the peals of your laughter

Continue

To let your eloquence

Elevate the people to heights

They had only imagined

Continue

To remind the people that

Each is as good as the other

And that no one is beneath

Nor above you

Continue

To remember your own young years

And look with favor upon the lost

And the least and the lonely

Continue

To put the mantle of your protection

Around the bodies of

The young and defenseless

Continue

To take the hand of the despised

And diseased and walk proudly with them

In the high street

Some might see you and

Be encouraged to do likewise

Continue

To plant a public kiss of concern

On the cheek of the sick

And the aged and infirm

And count that as a

Natural action to be expected

Continue

To let gratitude be the pillow

Upon which you kneel to

Say your nightly prayer

And let faith be the bridge

You build to overcome evil

And welcome good

Continue

To ignore no vision

Which comes to enlarge your range

And increase your spirit

Continue

To dare to love deeply

And risk everything

For the good thing

Continue

To float

Happily in the sea of infinite substance

Which set aside riches for you

Before you had a name

Continue

And by doing so

You and your work

Will be able to continue

Eternally

- Maya Angelou

One life on this earth is all we get, whether it is enough or not enough, and the obvious conclusion would seem to be at the very least we are fools if we do not live it as fully and bravely and beautifully as we can.

Frederick Buechner

All earthly things are the shadows of heavenly realities—the expression, in created, visible forms, of the invisible glory of God.

Andrew Murray

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.

My heart is filled with thankfulness…

… and my legs were ready to run.

I haven’t registered for a 5K in forever. I’m not sure how long it’s been. 5 years? 7 years? More than that? Back in the day when I was running anywhere, everywhere, as often as I could, I stopped running 5Ks. Instead, I spent my race fees on longer distances.

But today it seemed appropriate to get back to the basics and cherish the fact that on this Thanksgiving, I am able to run. Despite all of the bad possibilities I was confronted with earlier this year, very few of them have come to pass. And more importantly, the things that have come to pass have not been more than I could deal with on any individual day.

So today, as so many are sharing, “I am grateful for __________________”, I would like to add:

I am thankful for my health which includes the ability to run a 5K on this Thanksgiving morning.

And, if I’m being honest, I’m thankful that I still have my hair. There. I said it. Yes, that feels so vain, but it’s true.

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Happy Thanksgiving, Friends!

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

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.

We’re still waiting

Many of you have been kind to check in over the last few days to see if I have heard back from my thyroid biopsy. I have not.

Even though the biopsy was over three weeks ago, due to the initial inconclusive results, we’re now waiting on Thyroseq molecular testing results, and according to my provider in endocrinology, “The typical turnaround for the molecular testing is 2-3 weeks, so we hope to hear something this week or next.”

Thanks for caring, and thanks for praying. I appreciate your kindness. I’m becoming as anxious to hear as some of you are. Meanwhile, I’m here enjoying walks on these crisp fall mornings, balancing activity with the fatigue that comes when I overdo it, and listening to this song on repeat.

Happy Tuesday!

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!