2019 in review

Or please go away, 2019.

I looked at last year’s posts and realized I never did a year in review post. I’m not sure why, but I never even posted anything in December last year.

But now we’re nearly done with 2019. Thank God, good riddance and good bye. So I’m answering the questions I’ve (mostly) answered over the last few years.

What did you do in 2019 that you’d never done before? 

• I can’t bury the lead on this one—I got a second primary cancer. I’ve blogged about it a lot this year, so I won’t rehash the diagnosis, surgery, treatment and so on.
• I also finished treatment for my broken pelvis and used my bone growth stimulator 243 days this year.
• I also amazingly won my age group for two 10k races this year—after breast cancer surgery and radiation treatments. Those two races were part of a series of three 10K races, and I ended up winning my age group for that challenge.

Did anyone close to you give birth? 

Not this year—stay tuned for late January when Jordan and his wife Amanda are expecting their first child, a girl, whom they are naming Grace Elizabeth. I'm incredibly honored that she shares a name with me and I can't wait to meet her.

Did anyone close to you die? No.

Did you suffer illness or injury? 

Yes, in addition to the breast cancer and the broken pelvis recovery (which took a lot of time), I was also diagnosed with osteopenia and I’ve got little benign tumors on my kidney. Oh and a tiny pleural effusion on my left lung.

What countries did you visit? 

Sadly, and again this year, none. We did take a wonderful trip to Key West in February, Biloxi MS in October, and did some family traveling too. The highlight of the family traveling was our reunion in Stanley Idaho the first week of July. And I’m still so thankful that Ben and Jen graciously host us at Thanksgiving.

What would you like to have in 2020 that you lacked in 2019? 

No cancer diagnosis. Two's plenty. Enough already.

What dates from 2019 will remain etched upon your memory, and why? 

They are nearly all cancer-related: April 9 (diagnosis), May 6 (surgery), June 28 (last day of radiation), June 29 (Chloe died). I have a slew of dates from this fall, but you get the idea.
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What was your biggest achievement of the year? 

I was absolutely determined to continue running this year as I recovered from my broken pelvis and then dealt with surgery and radiation. I vowed I would run all throughout radiation treatments, all 20 of them, and I did. It was really hard, and unless you’ve had radiation, I don’t know that words convey the exhaustion and fatigue but I did it.

What was the best thing you bought? 

We got a new Ninja coffee maker and I am in love. BUT I also love the changes to the yard, the new carpet in the bedrooms and the new windows. Oh and my new car.

Where did most of your money go? 

Oh gosh, well yes I spent a lot on medical bills (although thankfully I have good insurance) but honestly we spent a lot almost as a way of saying we are going to live fully. 

For example, once I knew my cancer hadn’t metastasized, I traded in my Volvo C30 for a V60 Cross Country. 

Then finding bras that didn’t hurt after surgery was expensive, then finding bras to fit my new reality (things are different in the chest area) meant more money, etc. etc. etc.

We also wrote a lot of checks to fix things around the house: massive yard clean up, including removing 10 trees (we still have a shady yard), we had new windows installed in the bedrooms to match the windows installed in 2006, and we put in new carpet in the master and second bedrooms (third bedroom has original wood floors, the other two bedrooms never did).

So yes, the spending was all about enjoying life right this minute.

What did you get really excited about? 

I don’t actually have a good answer for this one. I have things I am looking forward to (Grace Elizabeth!). But I don’t know that I got really excited about anything this year. 

Even something like the end of radiation treatments became sadness because we had to put my old girl Chloe down the very next day. I never felt happy or relieved to be at the end of radiation, I only felt grief and sorrow over losing my kitty.

It’s been a really hard year, maybe the hardest of my life. The accumulation of stress overwhelmed a lot of my good coping mechanisms just as I lost one of my best ones (running). As my psychologist said a couple of weeks ago, the work I did 20 years ago was sufficient for the normal wear and tear of my life. 

But in 2016 Kent lost his job, in 2017 I was diagnosed with melanoma, in 2018 I fractured my pelvis and this year has been more cancer, and more invasive procedures, with side effects and complications I'm still dealing with. So it's no surprise that my PTSD came roaring back.

On Christmas Day, I sat in church as we read the prayers for the people. There’s a section where we pray this:

For the sick and the suffering, let us pray to the Lord.

I realized oh hey that’s me this year and teared up.

What book(s) did you love this year? 

I have been an indiscriminate reader (escapism at its finest) and devoured all sorts of fiction. I enjoyed Anne Bishop’s The Others series, and right now I’m reading some of Laini Taylor’s works. There's nothing like an alternate universe to escape this one for a hile.

What song will always remind you of 2019? I can't think of one song so here’s a link to a playlist of mine on Spotify. I listened to this one a lot. 

Sometimes I get creative

We got our duvet cover from IKEA oh five or six years ago. It’s very calming, with neutral colors and no quilting. I bought a couple of them and made matching curtains from one set and we’ve used the other set on our bed.

See the holes?

As with many duvet covers, you can slip a down comforter inside and this one has a zipper across one end. We’ve never put a down comforter in ours for two reasons: one, it’s much easier to wash the duvet cover when you don’t have to wrest with a down comforter; and two, when (not if) a cat pukes on the bed, I’d rather have two layers of duvet cover before the down comforter.

But as you might imagine that zipper has stressed the fabric every time we’ve washed and dried the cover. It’s not premium fabric, it’s IKEA after all so it’s gotten holes across the bottom.

Unfortunately, IKEA no longer makes the same item. Instead they have a weird quilted packaged set with sheets and pillowcases. You can’t just get the duvet cover and it’s certainly not plain and flat, it’s quilted.

I’d been bummed about those holes and wasn’t sure what to do—I didn’t want to have to make new curtains again, plus I really like what we have. And then the other night, I realized I could piece together a band of fabric the width of our current cover, remove that zipper and stitch the band to the end. That would extend the life of the duvet cover and also give us more fabric at the top of the bed.

So that’s what I did. What’s interesting is how much whiter the duvet cover is than the fabric I used at the bottom. It doesn’t matter, all that gets tucked under the bed anyway, but I did find it funny.

Back to Bryn Mawr (briefly)

After we got home from our Thanksgiving visit with Ben and Jen, we flew out the following Friday to Bryn Mawr, PA. My younger brother had a significant birthday this month, and all his siblings and spouses flew in to surprise him at his mother’s house (she’s my stepmother).

We had a great, rowdy, boisterous visit over the four days we were there, and my brother Stephen was completely surprised by it. He told me later he saw me about the second person in and then it dawned on him—hey wait a minute, the whole family is here!

It was good to see everyone. Technically, the step-siblings aren’t my step-siblings any longer. Well legally anyway, but I’ve known them since I was three years old so they are absolutely family.

Church of the Redeemer

That Sunday I attended the church we all went to when I was little. It's a gorgeous building and I was so happy to see the parish is still flourishing. That was also the only Advent service I was able to attend this month, because the day after we got back from Bryn Mawr, I hopped on a plane for Las Vegas. That one was a work trip, and anyway I don't care for gambling nor do I drink much these days. So it was a long week.

At the end of those 10 days, I was thoroughly confused about what time zone I was in. We'd spent nearly a week in California, home here in Kansas for a few days (Central time zone), then four days in PA (Eastern time zone) and then I spent nearly a week in Las Vegas (Pacific time zone again).

Last weekend, we drove to Tulsa to see Kent's mother. She's in a nursing home and unable to travel so we make sure to celebrate Christmas with her. Kent's brother gets her room decorated in early December, which she loves, and we buy the presents from her to us then have fun opening them with her.

So this weekend is the first and only weekend I've been home this month. I won't lie, it's nice to be home if only for a couple of weeks.

Everyone, including spouses

Melissa (brother's GF), me, Jennifer

All the siblings plus my stepmother

Silly family--Kent, Erin, Matt in the back, then Jen, me, Pierce

Good-bye and good riddance

Bone growth stimulator

In March, my physiatrist prescribed a bone growth stimulator to help my broken pelvis recover better and faster. As I shared then, this is a medical device that could only be used once a day for 30 minutes; once I started using it on day 1, I had exactly 269 treatments left. At the end of the full 270 days, the device would turn into a piece of expensive inert trash.

On December 7, the device pulled it's version of Cinderella and is now dead. And I’m pleased to say I used that thing faithfully all but one day I was at home (we got home really late and I just said no). I even used it on the day I had the lumpectomy. The rest of the days I missed, I was traveling. The device can’t be put through any sort of TSA screening so thankfully I didn’t have to try to take it with me on those trips.

Altogether, I completed 243 of 270 treatments. And while I got really sick of using it (seriously, you cannot do anything other than stand or walk around awkwardly while wearing it), I hope my broken bone got the full benefit.

And then what happened?

I mentioned that I’d had a thing removed from my arm in October, and that my dermatologist thought it was a dermatofibroma, but it wasn’t. Instead it was an atypical leiomyoma, and because of the location, it’s quite rare. The pathology reported some alarming features and no clear margins, so I had to have it re-excised in late November.

Boy, I’ll tell you what, that local anesthesia injection really hurt with the re-excision. My dermatologist said that’s because the body very quickly forms thick scar tissue in the healing process, which later gets remodeled into thinner, less bulky tissue. Because I had the re-excision just a month after the first excision, the injection just sort of ripped all that thicker tissue apart.

He showed me how much tissue he took for that one—it was a lot more than I thought he’d take, and I could see the fat globules just like you see in anatomy books. It was oddly compelling. The incision itself is less than beautiful, although I still think it will improve. At least I hope so.

The path report came back with minimal information—basically all it said was yup, you got clean margins.

But at my annual physical with my PCP in November, I mentioned all this and shared the path report. Because these atypical leiomyomas are also associated with kidney cancer, he ordered an ultrasound. And guess what? I have a couple of small tumors on my right kidney. So a week ago, I had a CT scan with and without contrast dye.

Now here’s the thing. I’m allergic to contrast dye, and the last time I had it, I got hives. So I had to take prednisone and Benadryl ahead of time only . . . I got hives again. Worse than the first time. Any thought I had that maybe I wasn’t really allergic? Gone. I’ll finish up the new course of prednisone today, and thankfully the hives started going away pretty fast once I started on the full course of treatment.

And to put a pretty bow on the story—yes, I have some small benign angiomyolipomas on my right kidney. I’m sure we’ll follow those to make sure they don’t grow. The report also said this: incidental noted is prominence of the IVC. I wondered if that’s because I’m a runner? Who knows.

Since last we met

I’m digging out from the absolute whirlwind of the last month while simultaneously getting ready for the roller coaster ride of January. So I wanted to catch up here before I forget things.

Let’s see—in November, we made our annual trip to see Ben and Jen and the kids for Thanksgiving. They’re no longer in Yuma AZ (which to be honest I was glad to have seen and I’m good never going back), but live in the most amazing area in Camarillo CA. I could live there so easily, the ocean is right there as are mountains, and the climate is pretty sweet too.
Jordan and Amanda couldn’t come this year; Amanda is in her third trimester and didn’t want to risk air travel at this point. I get it, it’s a long flight and these days flying isn’t all that much fun.

But we had a grand visit with Ben, Jen and the kids. In no particular order, we:

• Indulged my strong desire to go to a brick and mortar Uniqlo (in Santa Monica, which was not at all crowded on an early Sunday)
• Drove up the coast and then took Malibu Canyon to get the rest of the way to their house.
• Took a hike and saw forever across the ocean to the west. While I love mountains, I’m Team Ocean all the way.
• Saw tide pools on a very brisk day, and clambered all around the rocks finding more to see.
• Took Alison shopping as a small thank you for all the years she’s given up her room and her bed when we visit. 
• Ran a Turkey Dash race as a family in less than ideal conditions (40F and pouring—I do mean pouring—rain). The link is to next year's event, but the details are basically the same. The kids ran a 1k and were champs, and then we adults ran the 5k race. Sometimes the more miserable conditions make races more fun, especially once they’re done. I know we all felt a real sense of achievement that day.
• Enjoyed amazing food (always a given there), and got to visit with a niece (is she still a niece? She once was so I say she still is) I hadn’t seen in a while.
• We had some amazing Indian food at a place Ben loves. 10/10 would go back there again and again.
• We got a gingerbread house kit again for the kids, I wasn't sure if they'd be into it or if they were too old. I needn't have worried; they built it and then in 20 seconds, tore that sucker apart. 

In Santa Monica

VERY windy at the top of our hike.

Alison is taller than I am now. Jen is still slightly taller.

Tide pool--gorgeous.

I could watch this all day.

Just before Armageddon. 

The boys' racing gear laid out the night before.

Every single item was so good, best Indian food I've had in the States.

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.

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. 

There’s no pretty bow on the package

I’m at that stage of cancer treatment where people ask me how I’m doing with the clear and obvious expectation that I’ll say “doing great! Everything is wonderful!” They’ll say something like “so you’re OK now, right? The cancer is gone, right?”

The thing is, that’s not how this works. While my long-term prognosis is good, there’s absolutely no way to know if I’m cancer free. Cells are tiny, and even with surgery you can never be sure all of them were removed. That’s why most of us get additional treatment too: radiation to kill anything left in the surgery area, chemo depending on the kind of cancer, and drugs taken long-term to help starve any cancer cells that escaped the other treatments. As one article I read put it: you’ll know you’re cancer-free when you die from something else.

And now I’m dealing with physical, emotional and mental fallout from the cancer. I’m a survivor of childhood sexual abuse, and did a lot of work in my 30s recovering from that. Much to my horrified and complete surprise, this diagnosis and especially some of the tests or procedures has brought back the PTSD with a roaring nasty vengeance. I’m back to the hyper awareness that served me well as a small child but is completely exhausting as an adult. I’m having to dig back into the past, not a fun place to go, and recategorize and recode all of those memories in light of some of the procedures I found so traumatizing. All very vague, sorry not sorry—here’s a small example. I’ve had I don’t know, three or four MRIs of my head and did just fine with those. But the breast MRI about undid me—backwards and face down. As I told my radiology oncologist when she questioned why I asked for something to calm me down, that was a bridge way too far.

And I’m still trying to find my new normal in the physical sense. As I told the psychologist I’m seeing through the breast cancer center, I see the evidence of this disease every single time I get into the shower and get out of the shower. I still have limited range of motion in my left arm despite doing everything I’m supposed to do. My running is impeded by both my reduced stamina from radiation and from the continuing pain in my left pec (which also got radiated) and my left arm. You know it’s bad when I tell you that I often have to sort of hook my left hand into my waistband to give everything a rest.

I’ve been seeing the OT for about 6 weeks; on Friday (which should have been my last appointment) she recommended another 4 weeks. Unfortunately, I think she’s right.

I’ll also say I am not looking forward to the pinkification and sexualization of breast cancer next month. Please, I implore you, say no to the pink, worry less about saving the tahtahs and more about helping us save our lives. 

Sunshine is here!

I dare to hope we can have a pollenator garden next year.

back yard

looking east

straight back from the patio

Sunshine's coming

Nearly 15 years ago (what? How can that be?), we lived in a home built in 1905. Unfortunately, someone along the way put in a hideous late 1980s/early 1990s kitchen that not only took up all the floor space but also created a complete choke point between the dishwasher, sink and trash compactor. Why anyone thought they needed a trash compactor was beyond both of us but there it was, in all its smelly glory in the middle of the stupidest peninsula in the world:

See how cramped that kitchen looked?

I moaned and groaned and complained about that kitchen from the very beginning—I hated that peninsula and the trash compactor and the ugly light oak trim on jade green counters.

In late 2005, I ended up having major surgery and while doped up on prescription pain meds, I told Kent I wanted that peninsula GONE. He asked if I were sure about that, could I live without the extra storage and countertop? Hell YES I could. So he fired up his circular saw and took that sucker out.

We lived with it that way for about  year and then ended up renovating our kitchen shortly before we moved to Boston. The only thing that bugged me about that process was how little time we got to enjoy that kitchen before we moved.

Flash forward to this house—the yard is a lot to handle. The previous owner and her parents (who owned the house before she did) planted a ton of trees.

As is often the case, they forgot that a tiny oak tree which looks great right by the patio will end up destroying the house’s foundation.

And they forgot that all those trees would end up creating a shade canopy that doesn’t let anything else grow properly, not even the trees.

So it all started with us deciding this problem was more than we could handle. So we wrote two checks, one for plant removal and one to take out a tree, and got these results:

 Ahhhhmazing.

Then just yesterday, I noticed that our gigantic, planted in probably 1957 gum ball tree lost a huge limb in last week’s storms. We’re lucky it didn’t damage our garage roof. So we called the same tree guys back again.


Long story short, we’re having them take out about seven trees. It will take a few days for them to get all the trees done but in the meantime, this photo shows a glimpse of the sunshine yet to come.

July is gone?

Washed my running gear
at the hotel in a big pot!

Wow. That went fast. This is the busy time for me at work, well now through the end of April. So it’s not surprising that I blinked and we’re over halfway through August.

Recovery from the radiation treatments has gone pretty well. My skin held up just fine, I didn’t experience any blistering, although my nipple was angry for a while. What I’m still struggling with is the fatigue. I know, I know, the RO told me it could take four to six months to go away. But she also said that me being physically fit makes a big difference and that I’ll probably be back to normal sooner.

Only I’m not. It’s not that the fatigue is debilitating, it’s more that I have no reserves, no stamina the way I’ve always had. When I’m out of gas, that’s it, I don’t get any sort of second burst of energy.

Case in point this past week I traveled to Waco and then Las Vegas for work. We had long days, 12 hours, and the work is important but it’s equally tedious. Think lots of interviewing people at these locations, scoring their responses and then calibrating between the five of us on the trip. Wednesday evening, we were nearly done calibrating. One of my co-workers suggested breaking for dinner and then resuming. I was completely honest when I said look, I’m very nearly done for the day. I guarantee if we stop to eat. I will fall asleep at the table. So we kept going. Normally I would have been able to hang in there, but not last week.

And I think the radiation treatments are also continuing to affect my running, specifically my heart rate. Even with the breath holds to get my lungs and heart out of the way, I’m pretty sure there’s a scatter effect. What I notice is when running, especially if I’m fatigued (rads fatigue not tired from running fatigued), my breathing is fine, my legs are fine, but my heart rate is higher than it should be. I don’t think this is a lack of fitness issue either. I ran 7 miles yesterday morning, and on today’s run my heart rate just wanted to stay in the threshold stage (think 154 and up) and I needed it in the 140s.

I am trying to be patient. I know that things are still healing (my left pec for example pretty much always hurts now and I’m not really doing any upper body work—OT says it’s fried from radiation and it will get better), so hopefully this isn’t my new normal.

Our vacation in Stanley

I wanted to share some photos from that trip.

We're on our way!

View from the big house (we had two houses).

Kent as we hiked to Alpine Lake.

 Some photos from Alpine Lake.

 Kent took these--the second one was obviously on July 4. I was sound asleep!

A photo of all of us!