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.
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.
His glory and my good
I have seen my Father's glory
Revealed in Jesus Christ
And the more that I behold Him
The more He satisfies
When I gaze upon His beauty
When I see Him as I should
Then my eyes are lifted upward
For His glory and my good.
-CityAlight
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.
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.
The August 12th appointments
I had three appointments at Duke today - 8 am labs, 9 am CT scan, 10 am oncology.
When I checked in for labs, the lady who took my information (Ashley) had cute gnomes on her desk. That was a fun way to start the day.
For the first time since I started going to Duke, the lab was well behind schedule - even at 8 am. I also learned that you can’t have a blood draw from your arm on the same day that you’re having a CT with contrast, so the blood draw had to be taken from my hand (which is a little uncomfortable).
The CT scan was relatively uneventful. This was the first time having a scan done at 20 Medical Drive, and it was quite convenient. I am not a huge fan of the contrast, but it is what it is.
The radiology technician who did my scan was terrific.
After the CT scan, I thought I had plenty of time before oncology, so I went down to Tropical Smoothie for a Detox Island Green, per my usual routine.
Although it was still early, I went to oncology, thinking I would just check in and hang out in the waiting area, but, again, Duke was having an off day. Seventeen people were waiting to check in at oncology, and it took a full 30 minutes just to check in. I was actually “late” for my appointment by the time I got through check-in!
I had a quick visit with a PA, Kimberly Nolte, and we discussed the benefits/downsides of Letrozole, both agreeing that it seems to be doing its job and that, despite the bone density loss, it is the best option currently. Further, after discussion, I have come to the conclusion that I am going to opt for an infusion therapy for the bone density loss, most likely Reclast. I would rather be ill for two days once a year than deal with weekly/monthly inconvenience of taking the pills.
CT results are back already, but blood work will take a few days. However, given there’s nothing visible on the CT scan, even if something were to show up in the blood work, there’s really nothing to do now but wait another three months.
My next CT scan will be in 6 months. My next labs and office visit will be in 3 months. I am incredibly thankful for another good visit. Thank you for all who continue to pray for me!
One less thing to worry about for the time being
The ultrasound of my thyroid showed no signs for additional concern, and being able to have the scan done locally instead of driving to Duke was incredibly helpful.
The July 24th appointments
Today I had several appointments at Duke, two of which were diagnostic in nature - a DEXA scan and a stress echocardiogram. Both were necessary in order to evaluate the effect Letrozole is having on my body.
My first appointment was the DEXA scan, followed by a visit with the endocrinologist. Unfortunately, the DEXA scan showed significant bone loss in my back, as well as new bone loss in my hip and neck. There had been some bone density loss in my lumbar spine prior to starting Letrozole (which was noted on last year’s DEXA results), but this year’s scan revealed a 10% loss in the L1-L4, moving me closer to osteoporosis.
Though the bone loss in my neck and hip isn’t significant at this point, it does indicate Letrozole is affecting my bone density in a negative way, despite diet, exercise, and supplements.
Because oncology would like me to take Letrozole indefinitely, this is concerning to the endocrinologist.
I declined making any decisions today regarding treatment, but the endocrinologist advised that I begin researching bisphosphonates. There are a number of options, including oral, IV and injection. I am hesitant to begin using another prescription, so I am weighing all the options, including whether or not I will continue with Letrozole (something I will discuss with Dr. Rossi when I see her on August 12, the same day I have labs and my next CT scan).
I am part of an amazing group of GCT Survivors on Facebook, and I am seeking advice from them, as many of them have first-hand experience with having to work through these issues for themselves.
I went from endocrinology to cardiology for the ECHO. And that is the good news. Everything was just fine with my heart function and all images looked normal. I even got a mini-workout in as they tried to get my heart rate up to 150 bpm.
I am so thankful the echocardiogram was normal because that’s one less thing to be concerned about.
This health care journey is not one I ever thought I would be walking, but every time I leave a Duke medical facility I am once again grateful for the expertise and quality of care that is available.
We’ll see what the August 12 appointment brings.
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.
And today I received this amazing news. 🙌
I'm NED!!
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
Thank you to all of you have who been faithfully praying for me on this journey!
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
You’ll find me at the beach every morning I’m here in Wimington.
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.
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.
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.
I do 30 minutes of weights, stretches, and yoga.
Then I go for a walk/run for 60 minutes or more depending on what my training schedule has for the day.
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.
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.
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!
The wind & waves bring beauty
The last few mornings at the beach have been cold and windy, the waves pounding the shore, leaving very little room to walk on the sand.
I told a friend on Wednesday morning, “Just wait. This is going to bring some great treasures to find soon enough!”
Today I went to the beach filled with expectation, believing I would find something beautiful.
I walked north on Lumina from Johnny Mercer to Access 2. I then went out to the sand to head back, and almost immediately I spotted the first treasure of beauty. I didn’t really even have to search.
It was right there.
And that’s how the rest of the walk went. I saw beautiful treasures all around.
This caused me to think on my own journey over the last year, how at times the circumstances have been cold and unrelenting like the wind has been at the beach this week. And yet, for now, the winds have calmed and I see so much beauty every day. I am not even having to search for it.
It is right there.
Life is so beautiful.
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
The January 8th appointment
To those who have reached out this week to ask how Monday went, “Thank you!” I wanted to wait until all results were back before I shared any news so that we would have a complete picture.
A little after 7 pm last night, my lab results finally posted. Dr. Rossi hasn’t commented on them yet, but I am sure she’ll concur with the following.
My CT scan, Inhibin B, and AMH tests all came back exactly as we would want them to be. The Inhibin A number is higher than it should be (which is slightly concerning), but this bloodwork is about trends versus getting too worked up about a slight variation. If the number is still up (or rising) in April when we re-test, then we’ll pay a bit more attention to it.
For now, however, I can breathe and live the next three months to the fullest, and that includes being part of the Wilmington Marathon Weekend February 24. I’ll be doing the half . . .and praying I stay ahead of the sweeper as I haven’t run this far in a long time and I didn’t start training when I should have! Wish me luck.
This little restaurant is becoming a regular stop when I go to Duke because it’s close to the hospital and the food is great.
I had just been told Dr. Rossi was running about an hour behind when I got the above results. As I knew we wouldn’t get lab results back for days, I asked reception if I could just skip the face-to-face visit. Within minutes, I got this message, and Rick and I were on our way back to Wilmington.
I signed up for the half marathon on the drive back to Wilmington.
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.
