MOCSA Speaker's Bureau

I volunteer with MOCSA (Metropolitan Organization to Counter Sexual Assault) as a member of their speaker's bureau. I've spoken a handful of times, sometimes for their volunteer training or their Friends of MOCSA lunches.

I was asked to speak at the KU Medical Center's continuing education event in October, which was a great event. They specifically wanted to hear from a survivor of childhood sexual abuse about what would help/not help when we interact with our medical professionals.

Then earlier this month, I was invited to speak at a major fund-raising event in Johnson County. I was the closing speaker, and again invited to share my story with the focus on how important MOCSA is. The keynote speaker, whose notes I was able to see ahead of time, discussed the importance of education and also talked about how to identify grooming behavior and what appropriate steps to take if someone thought they saw that. So I tied my talk into hers, which I think helped make my portion better.

I always wonder if I'll be able to keep my composure when I speak, after all this is a very personal thing I'm sharing and the risk is real. Usually I do OK, but at this last event I received a standing ovation. Boy that undid me!

I've got two pictures from the event: in the first picture from back left is the CEO of MOCSA, the honorary chair who also happens to be the mayor of Leawood, where I live) and a news anchor for a local TV station who was the master of ceremonies. The two women sitting on the arms of the chairs are the chairs of the event. And the woman sitting on the far left was the keynote speaker. The second picture is during my talk. A friend who saw that said I look like I was testifying for Congress!

What a relief

I did run that 10K race today. I will confess I was extremely anxious this morning before the race started. Having already hurt myself running when I shouldn’t have, I was afraid I might be making the same mistake. I wasn’t going to wear the chest strap heart monitor, but Kent pointed out that if I ended up with cadence lock and my heart rate looked alarming, that would be not so good. So I wore it and fretted before the race started because my heart was racing from nerves. Also it was really cold with a wind that just cut through my clothes.

Enough about that . . . I’d set three goals for this race:

1. Be smart and walk if my heart went nutty.
2. Break one hour again
3. Run at an average pace of 9:30 min/miles. 

I considered the last two goals to be probably out of reach since I haven’t been able to train the last three weeks. But a closed mouth doesn’t get fed so I set those goals anyway.

Long story not so long, I hit them all. I ran an average pace of 9:29, broke an hour and best of all had no heart rate issues. I mean not a one. My heart was Steady Eddie the whole way. AND in a pretty crowded 10K race of over 600 people, I placed third in my age group. Now that was a very unexpected and nice surprise!

Today marks five weeks off tamoxifen and I’m also seeing the other common side effects dwindling away. I’m still going to get those cardiac tests, they’re scheduled, and I would rather make sure all’s well with my ticker. Plus I’ve hit all my deductibles this year and I’d rather not start next year with expensive tests. In fact, I hope for a very boring year for my health (and Kent’s too).

I'm a snowflake

Four years ago, I got the shingles vaccine—not the new and improved one that requires two doses but the one that was available in 2015. In less than a day, the injection site on my left arm had a big angry welt and it hurt. While the redness and pain diminished, the welt turned into a visible lump that bothered me. It didn’t hurt/hurt, but it was annoying and I hated how it felt and looked.

In September when I saw my dermatologist for my biannual follow up for melanoma, he commented on it and offered to remove it. I said heck yes, so on October 24, he excised it and sent it off for biopsy. He was very confident it was a dermatofibroma, but as he said, it’s always better to get that diagnosis confirmed by pathology.

Fortunately he did send it for analysis because it’s not a dermatofibroma but an atypical leiomyoma and quite rare. In fact, Dr. Google had very few resources for me. I found some good information here (but you have to create a free account to read), and also here. But there’s not a lot out there.

The pathology report also said more tissue needs to come out because what was taken doesn’t have clean margins. So joy of joys, I get to have another chunk removed from my left arm.

Not sure what to do . . . any runners want to weigh in?

I'm still having issues with my heart rate while running. Last week, I got in just one so-called normal run on October 29 where my heart rate behaved. I tried two more times but ended up stopping almost immediately because of the spikes.

No heart issues w/ HIIT

Thing is, I signed up for a 10K this Saturday, and spent the money for VIP access. This race is held in a large park, and it's where the Great Plains 10K was in September. There were not nearly enough Porta Potties so I spent the money to get to the extra ones, plus a heated tent. So it would pain me greatly to lose the money without having had the fun of a race.

However, in addition to my heart rate spiking, now my blood pressure is doing wonky things. It's high for me: 148/72. I'm normally no more than 110 on the top number and in the low 60s for the bottom number. So this is definitely high.

The other oddity is that I've done HIIT this week with zero heart rate issues. I mean I'm going hard, very breathless and sweaty and my heart just clocks along in the 130s. I would suspect cadence lock for my heart rate while running only a week ago, I bit the bullet and got a chest heart rate monitor and it's showing the same spikes when I run.

The heart rate spikes may still be from tamoxifen. I'm four weeks out and it's one that hangs around. My blood pressure may be due to Prolia as this is a known side effect (see page two of this PDF).

If you're a runner and you were me, what would you do?

• Bail on the race (would be my first ever did not start)?
• Try and know I might have to stop (which would also be my first ever did not finish)? 

The other factor is I know this course now, since I ran it in September. We'll have two water stations and no way to do anything other than walk or trot back to the starting area. The course is a big loop and easily 2/3 of it is trail so it's not like anyone can fetch someone who's in trouble.

Kent's running the 5K there, so I'll be there anyway. I want to run this race, but I want to run it competitively and in a way that doesn't harm me. Decisions, decision.

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.