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 - Sept 2024
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 24, 2024 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- June 2024
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).