The Saga Continues…

I mentioned a few posts back that in addition to stopping letrozole (an aromatase inhibitor) which had originally been prescribed to me as long-term endocrine therapy for breast cancer, I saw a cardiologist. I was experiencing what felt like irregular heartbeats. Since arrhythmias have been associated with aromatase inhibitor use, I wanted to make sure that I wasn’t going from one problem to another.

The cardiologist I met with ran an EKG, listened to my heart and told me he really didn’t think I had any issues. However, he ordered an echocardiogram and a Holter monitor just to be on the safe side. I did both tests.

A week ago, I met with him to go over my results. He was pleasant as always, asked me how I was feeling–I was feeling great, actually, since I was pretty positive that I’d imagined any heart issues because I’d experienced little since I turned in the Holter monitor for analysis. So, if anything, I was a tad embarrassed for blowing things out of proportion. Geez, I’m such a hypochondriac!

That’s good, he said, equally pleasantly. “Because we found something.” Equally pleasantly.

Hang in there, baby!

I had not expected that. What I was expecting was, “everything looks normal.”

However, looks like there were some arrhythmias: supraventricular tachycardia and supraventricular ectopics.

My doc wasn’t concerned. He said that based on other data (72% left ventricular ejection fraction [LVEF]) my heart was healthy and strong.

Ooookay. But I was a little shaky that my concern about extra beats had been confirmed. Because I hate fearing that something’s wrong and finding out that I was right in fearing it! I’d prefer that it be all in my head.

Then we delved further into the echocardiogram. I shifted uncomfortably in my seat.

On the plus side, lots of things were normal. That’s good.

However, way back in early 2018, while I was receiving infusions of Herceptin, my then-cardiogram showed pericardial effusion (fluid where it shouldn’t be), but in a subsequent echo it had “fixed” itself. Well, that was back now. Also trace mitral and tricuspid regurgitation: my valves are a touch leaky. My cardiologist wasn’t too concerned about it. “Wear and tear,” he said.

But he also noted that I had a marginally “dilated proximal ascending aorta.” Right after which he noted that I was tall, suggesting that there could be error in the extremes. But neither one of us was 100% sure whether that was a change from the previous echo, based on how the report was written. And he questioned some of the values, saying that echocardiograms weren’t perfect or always accurate.

Get off one ride and right back on another.

At the same time, he wanted me to come back in a year for another echo. Just so that we can be sure that the dilation hadn’t progressed. “Then we worry,” he said.

I left the office with questions swirling inside my noggin and decided to do some computer research, which I immediately regretted.

First of all, “dilated proximal ascending aorta”, when googled, brings up a gazillion results about aneurysms.

ANEURYSMS.

I know I don’t have an aortic aneurysm. But I have to wait a year to see if the dilation progresses. That’s 365 nights of staring at the ceiling. And I have to make sure to remain calm and not harrass myself into elevated blood pressure, because that can put more stress on the blood vessel and dilate it even more.

Oh, and the supraventricular tachycardia and ectopics? Those are improved by exercise (um, yep, been doing that) AND by staying calm.

Try yoga and meditation, the websites suggest.

Okay, yep, been doing that too.

So where am I with all of this now? Obviously, I need to keep doing what I’ve been doing. But this really does underscore a couple of things:

1) Meditation and mindfulness are critical to our well-being. These are habits to establish now (yesterday!) and not stop. Ever.
2) Cancer casts a long shadow. You might be fortunate enough to earn the title of “cancer survivor”, but that doesn’t mean that it’s all giggles and rainbows afterwards. Cancer treatments are tough and while we’re furiously obsessed with doing whatever we can to minimize the chances of cancer returning (because that’s Job One), someone at some point needs to start thinking about what happens once the cancer is gone and we have to clean up after the long-term effects of the treatments.

Could my heart “issues” (I don’t know if they are serious issues yet) have been caused by Herceptin infusions, radiation to the chest and aromatase inhibitors? Yes, they could have. But could the fact that I am highly reactive and have a strong response to stressors played a role in this? Yes, of course.

Time is moving forward and I’m going to have to keep up.

And does it really matter? No, in all honesty it makes no difference. Whatever happened has passed. My only path through this is a calm heart and solid grounding on the Earth. I’ll know more about my physiological state in a year, which gives me another twelve months of daily meditation and exercise, and an even better appreciation of how my mind generates agony.

Maybe this is what I need to help me get better.

When Is a “Chemo Port” Not a Chemo Port?

When is a “chemo port” not a chemo port? When it’s a heart rate monitor. Except that my emotional brain can’t tell the difference.

For anyone unfamiliar with cancer chemotherapy, a chemo port, or subcutaneous implantable catheter, is a device implanted under the skin (usually on the chest) that is accessed during an infusion to enable easy mixing of the chemo drugs with blood within a major blood vessel. This avoids a good deal of injury to any smaller blood vessels, were you to get chemo drugs via an IV to your arm. (For more info, see this post.)

This is what I had under my skin for a year while I was undergoing chemotherapy infusions. It took some getting used to but I never reached the point where I could ignore it.

As much of a blessing as the chemo port is, having a foreign object pushing up from the chest wall under your skin can give “Alien” (as in the movie) vibes. For me personally, the implanted chemo port was more psychologically taxing than I anticipated, and as soon as all my infusions were done, which took a year, I had it taken out ASAP.

So almost three years after its removal, the chemo port is spooking me again, this time in the form of an extended Holter monitor for continuous heart rate recording, which I’ll have on for almost two weeks. It’s taped to the skin in a fancy patch that you can exercise and shower in, and supposedly you forget that you’re wearing it and go on your daily routine as normal.

But for me, it’s bringing up the spectre of chemo port, and memories of discomfort and pain I felt having that bulge stretching my skin of my chest. I chant my mantra of “it’s ON, not IN” in an effort to distinguish between the port and monitor, but the longer than it stays on, the more anxiety I feel about it.

My Holter monitor (ePatch) sits on the side opposite from where my port did, but it takes up the same amount of space in my head.

All those emotions about the lack of control over my own body, feeling so abnormal and outwardly looking “sick” (not to mention fear of death) are rushing back. The Holter monitor peeks up from the neckline of my shirt, hooks my car’s seatbelt and often seems to be in the way. I find myself moving away from other people in fear of having them knock it or hug me too tightly and cause pain, even though the monitor doesn’t deserve the same apprehension that the port did.

I’m removing the Holter patch today and sending it back for analysis, so that’ll be a big relief. But the power of this reaction is another reminder of the depth of fear that the cancer experience placed within me.

~~~~~~~~~~~~~~~~~~~~~~~~~

So why am I wearing the heart rate monitor anyway? I was having little cardiac “episodes”, particularly over the last year, and this was one of the (many) reasons for discontinuing aromatase inhibitors. Mainly these were sensations of skipped or extra beats or an odd “fluttering”. I’ve already had an EKG and echocardiogram, neither of which apparently showed anything abnormal (I haven’t received a final report of my echocardiogram but had been told that the cardiologist would contact me if he found anything problematic, and it’s been a week and a half, so I’m guessing everything’s okay?).

Okay, it’s off. But it’s left its mark on me. I’m hopeful I can get rid of this impression faster than the port’s. Chant with me: “ON, not IN…”

The Holter monitor was the last step in looking for arrhythmias or similar issues. And wouldn’t you know it? The further I’ve gotten from stopping aromatase inhibitors, the fewer episodes I’ve experienced and haven’t felt anything distinct since I got the monitor. What I’m feeling is very occasional, subtle “sensations”…but these may turn out to be nothing. I’m okay with that. As a matter of fact, I’m not even worried about what the data might show.

I just want this thing off me.

My Top 4 Mindfulness Apps

This time of the year is stressful for me because it’s the anniversary of my breast cancer diagnosis. That means it’s time for the scans that determine whether I can continue to consider myself “cancer-free”. Scanxiety, anyone?

This week is going to be a doozie, since I have my diagnostic mammogram on Tuesday followed by a cardiologist appointment on Thursday, the latter of which has become, ironically, the major stressor as I try to determine whether I’m suffering from “cardiac anxiety” or an actual arrhythmia (one of the possible side effects of aromatase inhibitors). To top it off, I get my first COVID immunization Friday, which brings its own stressors since I’m a bit “side effects-shy” these days.

Given all this, it’s a good time to talk about what apps I use the most to help calm my anxious mind. I’ve written about quite of few of them in my “Mindfulness Apps I Love” series, but here are the one I keep coming back to (all have generous free offerings; both Calm and Insight Timer have had major upgrades since I originally posted about them):

The app I started my meditation practice with. I use it at least once a day, every day.

Calm
This was the first mindfulness app I downloaded and it’s the one I’ve used every.single.day since March 13, 2017. I find the voice behind the app, that of Tamara Leavitt, very soothing. Since I started with it, Calm has added a number of elements featuring voices of celebrities, music, movement, classes, sleep stories, background sounds and other features that I haven’t even used.

What I use most: The curated “Daily Calm” meditations are my do-to first thing in the morning or if I wake up in the middle of the night with troubling thoughts swirling in my head — Tamara’s voice gives me something to focus on and shoos out the scary negative self-talk.

Why I like it: Because all the material is created specifically for the app, I always know what I’m going to get. It’s predictably high quality using a consistent format, and for me, it works. Also, once the meditation is done, the background sound continues and provides a soundtrack for drifting back to sleep or continuing meditation on my own, if that’s what I need. Finally, since this one was my first app and I ended up investing in a lifetime membership, I get access to everything it has to offer. If you’re not ready for such a loyal commitment to this app, you might not have quite as much to choose from.

By far the largest selection of meditations, classes, music and more that I’ve ever seen anywhere. You’ll need time to look through the offerings, but relax, there’s a search function. 🙂

Insight Timer
This app offers a large collection of many meditations, music, classes and whatnot by a huge array of teachers. You need to search around because you don’t always know what you’re going to get, but if it’s out there, it’s in this app. I’ve played around with meditations that I might not otherwise just because they were available to try out. And now new, there are live events that include meditations, concerts, even yoga classes that you can join to help maintain a sense of community–so important at a time when so many in-person venues are closed.

What I use the most: I’ve settled on a handful of teachers with voices and styles that I prefer. Often, I use this app at the end of the day, when I’m trying to clear my head and settle into sleep, but it’s also great for any time when I want some guidance for settling down and am looking for variety.

Why I like it: OMG, the selection! Not only is there just about every type of meditation available (secular, sacred, shamanic and so much more–and now the app allows you to filter out the ones that make you, shall we say, “uncomfortable”), but there is a vast array of languages in which to listen. I speak a specific European language from a small Baltic nation, and yep, Insight Timer has a meditation in it. This is really worth looking into and most of everything is available for free–but donations in support of the app and teachers are very welcome.

Unwind has lulled me back to sleep after nighttime wakings with too much swirling in my head. It’s prevented me from throwing myself headlong into anxiety, as I’m reminded that breathwork is a tool to put the breaks on runaway fear.

Unwind
This is an app that I recently reviewed here, and as I’ve gotten more into breathwork and vagus nerve relaxation, it has become invaluable to me. The combination of ambiances that you can select from paired with a gentle guiding voices that cues breath inhales, exhales and holds has made this perfect when I don’t want a guided meditation but I do want something to focus on.

What I use the most: Lately I’ve been opting for the “box breathing” pattern (inhale, hold, exhale, hold). It is perfect for calming my mind without straining my breath. I pair that with the “River Under Bridge” background ambiance that is a nice combo of gentle bird sounds with soothing running water.

Why I like it: Unwind has gotten me out of some anxious moments, specifically too-early wakings brought on by a racing heart. Instead of throwing in the towel and deciding that I’m just going to have to start my day at 4:27am, I’ve been able to lull myself back to sleep; again, the spoken breath cues provide guidance but are unobtrusive enough to allow drowsiness to set it. Additionally, Unwind is ideal for those times of my day that I need to eke out some head space and take a break from work pressure. Even a few minutes is enough to get my breath under control.

MyNoise helps me put distance between myself and my fears. It generates the mental space that enables me to step back and observe what’s going on without being pulled into it. And of course, the wide selection of sounds will mask just about anything.

MyNoise
I posted about this app in late January. It’s the most recent one that I added, but it is amazing! MyNoise consists of sound generators that you can manipulate to your liking, to create unique and changing background sounds for literally just about any mood or need that you can imagine! In addition to the app, there is a website (mynoise.net) that provides similar generators. Both the app and the site offer so much, but when I’m working on my computer, I’ll usually listen through the website since my eyes do better with the large screen.

What I use the most: I tend to prefer nature sounds with running water or else drones and more meditative music. My daughter, who is also a MyNoise afficionado uses the sound of medieval scribes to create an atmosphere conducive to doing college work remotely.

Why I like it: S P A C E. MyNoise creates space by masking unwanted ambient noises (busy street, noisy neighbors, etc.) and thereby provides breathing room and headspace. I have used this for mental breaks throughout the day, or for times when I feeled overwhelmed and need help staying present. There are no discernable loops in the sounds and because each sound generator is made up of different elements that can be manipulated by sliders, you literally can create a totally custom sound environment. It has to be experienced to be believed and it’s well worth experimenting with.

So, these are the four apps that I’ll be working with a lot this week as I make my way through scans, tests and immunizations. Each app has their own little something to contribute to maintaining my peace and I appreciate the portability of having such effective soothers in my hand, on my phone.

After Four Years of Treatment, Calling It a Day; or, “If It’s Not One Thing, It’s Another”

I saw my oncologist last Thursday, February 18th.

It was just few days short of four years from my diagnostic mammogram, the one after which I was told I had triple-positive breast cancer.

If you or someone you love has been through this experience, you know the drill: surgery, chemotherapy, radiation, maybe monoclonal antibodies, endocrine therapy. Yours may come in a different flavor, but the dish is the same, give or take.

Last Thursday, following three years of endocrine therapy (two of tamoxifen and one of letrozole [aromatase inhibitor]), I called it quits, with my oncologist’s permission. The side effects of the letrozole became too much for my joints, my brain, my intimate relationship, and possibly even my heart. My doc said he knew it when he saw me and agreed that enough was enough.

Yes, this should be me right now, since I’ve eagerly awaited this day for a long time. But it’s complicated…

Keep in mind the song that all of us cancer folk sing: “everyone’s experience is different.” Based on my personal situation, and after a medical consult, this was the right decision for me.

I wanted to know what to watch out for, so my doc said:

1. Unexplained weight loss
2. Persistent cough
3. Neurological issues (i.e., seeing things that aren’t there, blurred vision, etc.)

Obviously, there are other signs of cancer recurrence, but those are what my oncologist wanted me to be particularly wary of. And then he noted that he couldn’t remember the last time one of his HER2+ patients had a relapse, so effective is the Herceptin that we’re given. But it has heart risks.

Since I’ve been off letrozole only a few days, I’m still experiencing most of the side effects–it will take several weeks to shake them.

I almost don’t know what to do with myself, and I’d be beside myself with joy if it weren’t for a possible heart arrhythmia (!) that I am experiencing. I’ve already scheduled an appointment with a cardiologist.

‘Round and ’round and ’round we go…

Yeah, I’m miffed that there’s always something with cancer. A week prior to my onc appointment I’d been in my car at a traffic light when I felt heart palpitations, sort of–and then I started seeing dark spots, like you do before you faint. The episode passed, but I had been having those brief palpitations for months, minus the spots. Maybe once a day? Maybe less.

And over a year ago, I went in for a regular health check-up, during which time the nurse practitioner checked my vitals and noted that there was some irregularity in my heartrate.

Just like with my cancerous lump, I waited, thinking would go away. But chemo and especially Herceptin are cardiotoxic, and aromatase inhibitors have been associated with heart arrhythmias. So just as soon as I got off the cancer carousel, I’m getting on the cardiac one–until I’m able to rule out problems.

I have both a 3-D mammogram and an EKG next week, and I’m way more worried about the EKG. Who would have expected that from a breast cancer survivor?