A follow up to the heart rate stuff

I saw my medical oncologist’s physician’s assistant yesterday—first time I’d met her. Somehow the message I’d sent through the portal and was why the MO’s office set up that appointment yesterday, didn’t make it into why I was there. Frustrating.

Anyway, I recapped things with the nurse and then the PA:

Runner for decades, three things have changed in my world in the last few months. About 10 days after starting the tamoxifen, I started having heart rate spikes while running. Tamoxifen was the only thing I could stop and maybe see if that’s what caused the issue, even knowing that it’s got a half life of four to six weeks (meaning it sticks around that long after stopping the medication). Heart rate is better but still spikes but I also still have three of the very common side effects from tamoxifen.

Both the nurse and the PA asked how high my heart rate had spiked—176, 189, those were the two I shared. The PA said ok clearly that’s off because your pulse just now was 48. YES. THAT’S EXACTLY WHY I’M CONCERNED.

You can see this
morning's spike

For now I’m still not taking the tamoxifen. She said that indeed it can take four to six weeks for the drug to leave, and I’m just now at three weeks. She strongly recommended a stress test, so I’ve pinged my primary care physician for a referral.

Neither the PA or I expect any heart issues to show up; I’ve got no family history to speak of, and I’m in really good shape. But then again, I will never say never again. I also have no family history of melanoma, or breast cancer . . . and here I am.

Yesterday’s run was great: no heart rate spikes, decent times for what was intended to be an easy run and I even did negative splits. I tried running again this morning since we have snow coming later today, which will probably mean no running tomorrow. Within 10 seconds, my heart rate was up to 160. So things are slowly getting better but not fully resolved.

Why Mississippi?

Until last weekend, I had four states left to visit to complete all 50. Now I will also say that my rules for counting a state as one I’ve visited are maybe a little on the strict side: I have to spend at least one night there, and eat a meal or two and see some sites. So changing planes wouldn’t count, nor would driving a few miles in and then turning around.

Biloxi was lovely, and of course the ocean is my happy place so that made it even better. The temps were warm but not crazy hot. We stayed at the Hard Rock, purely for the view from the room.

I was surprised by two, well three, things:

1. Biloxi has a lot of casinos. I think maybe that’s the big tourist draw. I’m not a gambler, I find gambling a colossal bore so we never even ventured on to the casino floor.
2. Smoking is apparently a lot more widespread there, maybe it’s a deep South thing, I don’t know. But all but one of our Ubers smelled strongly of smoke and pretty clearly all the drivers smoked. The Hard Rock also smelled strongly of smoke (thankfully not our room, it was truly a non-smoker room), but interestingly not the Beau Rivage (a more upscale casino/hotel next to the Hard Rock but without the amazing view).
3. The Sons of the Confederacy are alive and well. We went to an art museum (which was really cool) and then thought it would be interesting to see Beauvoir, where Jefferson Davis lived the last 10 years of his life. Only a honking big Confederate flag was flying there. In looking online at their website, there’s a whole program to “adopt a Confederate soldier” with the stated goal of buying and keeping Confederate flags flying all year round. We didn’t bother going in. 

But mostly this trip was a change to relax and check off a state. I have three more to see: North Dakota, South Dakota and Alaska. Kent needs one of the Dakotas (I forget which), Alaska, Vermont, West Virginia and New Mexico.

And I'm done

I did not expect side effects from the tamoxifen to kick in at such a low dose. But as I mentioned earlier, I've been having heart rate issues on my runs. Today's run if it can be called that was the worst so far.

I'm training for the next 10K race on November 9 and today's run should have been an easy 7 miles, keeping my pulse nice and low. Everything else felt great: lungs, legs, even the left pec was behaving. Unfortunately even before I finished one mile at a super slow pace, my heart rate spiked to 176.

I've been running with a Garmin for a couple of years, and a FitBit for three years before that so I know how my heart behaves and this? Is not it.

So I'm done with the tamoxifen. I'll take my chances on recurrence without the drug and focus on that 40% risk reduction offered by exercise and weight.

About those side effects

I’m on week four of tamoxifen (with another four years, 48 weeks in front of me if taken as planned). I’m taking just a quarter dose of what’s normally prescribed, and that’s on purpose. I haven’t had good experiences with drugs that interfere with hormones and hoped that a slow ramp up to the full 20 mg would mitigate any side effects.

Unfortunately that’s not what’s going on. This whole thing is further complicated by me starting Prolia 10 days before starting tamoxifen so teasing apart what’s causing what is a little difficult. Both drugs can cause muscle pain, joint pain and bone pain, all of which I have. But those didn’t start until about day 10 of the tamoxifen which is also when I noticed my heart rate getting too high while running (another tamoxifen side effect although apparently not very common) and also started having serious hot flashes.

I didn’t have hot flashes in menopause, I had more what I’d call warm flashes. But these are much more intense—sweat rolls down my face, I’ve soaked my clothes. They’re pretty intense.

But it’s the heart rate issue that concerns me the most because it’s affecting my runs. It’s not safe for me to run at my maximum heart rate for very long (it’s not good for anyone, not just me) and it’s been spiking that high a lot. Sunday’s “run” was mostly walking because my heart rate wouldn’t stay down.

I run because I love it, sure. But running also plays an important role in reducing my risk of this breast cancer recurring.  According to this study (summarized in this article), physical activity can reduce the risk of death from breast cancer by about 40%.

But what’s my risk?

I used this online calculator to run my results two different ways. The pathology report from my biopsy said that lymphovascular invasion was present, and the path report from my lumpectomy said it was absent.

Including the LVI, I have an 18% risk of recurrence in the next 15 years. When I reran the test using no LVI present, my risk is 11%.

Here are two more results using a different calculator, one with me taking tamoxifen and one without.

Taking tamoxifen

No tamoxifen

Let’s go with the worst-case scenario. If I have an 18% risk of death specific to breast cancer in the next 15 years, and I continue working out the way I normally do then my risk drops to 10.2%. Sure I could cut that 18% risk by 1/3 by taking tamoxifen but at this rate, I would lose the benefit from exercise.

As I told Kent, I don’t have a death wish, I have a life fully lived wish. I’ve scouted around the forums that have been so helpful to me and magnesium glycinate has helped others with the same sorts of side effects. I got some last night and started taking it. I’ll give the tamoxifen + magnesium at least a week. If things aren’t better, I’ll stop the tamoxifen and continue the magnesium by itself for a couple of weeks and then try again with the tamoxifen.

The Heartland 30K Challenge

Or how I did a little scope creep and ran three 10K races instead of just one.

Backstory:

• Was diagnosed with melanoma in August, 2017. Got that removed and dealt with the mental side of having a really nasty cancer, mostly by running.
• Broke my pelvis May 2018 (actually ran two races on it because I thought it was a groin strain—nope, I fractured it and was on crutches for nearly 10 weeks). I was dx’d with osteopenia then. I started slowly training last fall, swam first then ditched the pool and did a walk/trot combo for a bit. Still had a lot of pain but turns out the bone I broke is notorious for that and I’ll probably always have that pain.
• OK so by March this year, I was getting my base built—still nowhere near the 30-35 miles a week I was running in 2018 but working on it. Then I got dx’d with breast cancer April 9.

After the Plaza 10K

Condense all this down: surgery in May, radiation the entire month of June (I ran all the way through radiation treatments, slowly but by golly I ran). And I signed up for the Plaza 10K race as my first race after all of that.

I’ll be honest, the race didn’t go as well as I hoped. I trained well, worked hard but when my radiology oncologist said recovery from radiation takes four to six months, she wasn’t lying. My heart rate wouldn’t stay down, the rain wasn’t pleasant and long story short, I ran 1 hour, 42 seconds.

1st in my age group

The second 10K was the following Sunday (the Great Plains 10K) and the weather was much different, cooler and sunny at first but then . . . boy oh boy the temps rose like crazy. I also didn’t realize this 10K was mostly on a trail, and while the trail was in good condition, I don’t ever run on trails. I knew I hadn’t run my best race, not even close, but since I had to wait for my husband to finish, I figured I might as well get my time. I was gobsmacked when the lady said oh you came in first for your age group.

Say WHAT?! That’s the first time ever for me—I sort of felt like a fraud because my time was slower than the week before (1:01:04) and yet somehow that was first in my age group.

This photo of Kent
really shows the rain.

Then last Sunday, I ran the third 10K (Dot to Dot). We had terrible thunderstorms forecast that morning, so I wasn’t even sure the race would happen. But it did . . . in absolute torrential rain. I’ve never run in rain like that, not ever. But it wasn’t hot, and the course wasn’t on a trail and I finally, finally broke one hour: 58:53. Still not my PR but holy cow I was ecstatic about that finish AND I won my age group again!

To top it all off, the final results for the Heartland 30K Challenge were posted on Thursday and I won my age group for the whole thing.

What’s next for me? I need to build my stamina back up and continue building my base. I’m toying with the idea of running the Kansas City Marathon’s 10K race on October 19, but not entirely positive that’s a good idea. It's an incredibly hilly race, plus I’ve just started on two new drugs, one for the cancer and one for my bones, so I need to make sure those play nice with me.

Here's how rainy it was for the Dot to Dot 10K:

Tomorrow is D Day

In April, when I was diagnosed with breast cancer, my medical oncologist laid out his preferred plan of treatment after I’d had surgery and radiation. Because I’d been diagnosed with osteopenia (later changed to osteoporosis by my endocrinologist), aromatase inhibitors were off the table. They weaken bones and mine are already compromised. So instead, he told me I would be taking tamoxifen, 20 mg a day for probably five years, maybe more.

I'm not at all excited about taking tamoxifen. It's got some well-known common side effects that would greatly interfere with activities I enjoy. I'm not sure how much I'm willing to tolerate there, to be honest, especially since tamoxifen reduces the risk of cancer recurring by less than 10% for me. Diet and exercise give me far more bang for the buck with a 40% reduction in risk. Still, I'm not as low risk as I would have hoped, and one of the pathology reports indicated I had some lymphovascular invasion. That isn't necessarily a sign that this cancer will return or metastasize some place else but it's something to keep in mind.

So I’ve wrestled with whether I’m up for going on this drug. And as I told my MO, I had already signed up for a 10K race—the Plaza 10K which was two weeks ago—and I didn’t want to go on anything until after that race.

He agreed to that delay, which of course I’ve scope creeped by adding in two more 10K races, which were all part of the Heartland 30K Challenge (you can read about the Challenge here and I'll write more about those races later this week). And in the meantime, I ended up going on Prolia a week ago last Friday. Again, I would have preferred to start that drug after these three races were over, but my hip hurts all the time where I broke it and I’m highly, highly motivated to save my bones from something I clearly have.

In the last 10 days, I’ve unfortunately experienced some side effects from Prolia. That’s a little discouraging to be honest. Joint pain where I’ve never had any joint pain, muscle pain too, dry mouth—nothing major but still annoying. But at least I know what the Prolia feels like on its own.

And now tomorrow I guess I’ll find out what the tamoxifen feels like. I’m doing the slowest ramp up in the world—I’m starting with 5 mg a day and I’ll see how that feels. If I’m lucky and don’t have any side effects, I’ll go to 10 mg. But slow and steady is my motto on this part of my cancer treatment.

Bought a fancy pants pill splitter just for this drug.

When you don't want to lose the view

But you need just a bit of privacy, you add very sheer sheers.

Or at least we did. We knew that removing the trees and massively overgrown bushes meant we would also lose the jungle feel and the green privacy all that overgrowth provided. But we wanted to preserve the view as much as possible. So I altered these sheers from IKEA to be essentially flat panels.

At some point, the red twig dogwoods we planted at the fence line may provide some privacy. Until then, it's IKEA again to the rescue.