Throwing in the Tamoxifen Towel

I brazenly stole (though I'd prefer to say borrowed) this picture from CCI's FB page because I didn't think to take one myself. I may replace it soon so I'm not labeled a thief.

Driving to my oncology appointment I envisioned every possible scenario that could play out with my doctor. Each heated exchange ended with her demanding me to "Just take the tamoxifen!" and us mutually agreeing to fire the other.  Then, I'd face the challenge and frustration of finding a new oncologist. I'd probably die before I could  locate another one blessed with my insurance company's preferred provider status. Ugh, I really didn't want to find a new doctor. Even if mine was about to inflict a serious tongue lashing.

Do you ever do that? Carry on impending conversations in your head, assuming how they'll unfold? Or worse yet, your mind conjures up a fabricated scene right on the spot? I mean, one minute you're having a nice lunch with friends and in the next moment the waitress is telling you (in your mind, of course) that you probably deserve cancer based on your menu order and apparent lack of exercise. You respond by telling her where she can shove your uneaten key lime pie...

You don't do that? Well, pretend I didn't share that last part.

Our minds can be our own worst enemy. Sometimes all the mental sparring works my emotions into a real tizzy before I realize what I'm doing. Once I come to my senses I whip out some scriptural salve to help quell my imaginary thoughts, namely the following:

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. ~ Philippians 4:8

Often I remind myself, "Whatever is TRUE...think about such things." In those moments that I'm carrying on ficticious conversations  I don't require the rest of the verse. I need to focus on what is true, and oddly enough my Emmy award-winning fake dialogue isn't.

I chided myself as I neared the parking lot, "Kim! This is crazy! Why don't you pray about it instead?" So I did. I asked that the Lord would be present and provide a sense of calm for our discussion. Then I remembered my go-to verse and began to dwell on what is true.

Before I share how the conversation REALLY transpired (spoiler alert: neither of us was fired) let me provide some background to my history with tamoxifen.

My very first bottle of tamoxifen.

I began taking tamoxifen Monday, February 20, 2017.  I did my homework and was well aware of its side effects and paid for genetics testing to ensue I would metabolize it ok. Once I received my results indicating my body could utilize the tamoxifen, I filled my prescription and reluctantly swallowed the first white pill.  If you're interested in genetics testing prior to taking tamoxifen, visit KAILOS.

Initially, the worst SE was depression. It kicked in almost immediately. Within two weeks of taking 20 mg. daily, I began contemplating how I could end my life. I'd eye oncoming semis and think how easily I could just swerve into their path, but then I'd consider all that could go wrong with that plan. Finally, one morning after taking the kids to school and showering, I gave my pathetic self a pep talk. I recall saying, "Kim, either A) your body will adjust to this medication and you'll be OK or B) your doctor will give you something to combat the depression or C) you will quit taking this medication and you'll feel like yourself again. But whatever you do, you will NOT continue like this. Believe it or not, that little chat with myself helped.

I had no plans to quit at that point. I knew it was important to continue the medication at all costs to keep cancer at bay, and I really didn't want to take anti-depressants because the thought of more SEs was...well...depressing. So, that's when I became a workout fiend (by my standards) and started riding my bike, walking outside, going to the gym, lifting weights, walking on the treadmill, SOMETHING every. single. day. When the weather turned nice I swam laps. The depression lasted 4-5 months but exercise definitely helped me traverse the both literal and figurative overcast days.

I've never been an outdoorsy person who gets exercise naturally by joining in spontaneous games of flag football. Gyms fit my style.

We have a great neighborhood pool that few people use. That's a great thing for swimming laps, but not so good for extroverts looking to connect with others.

The other SE I experienced was insomnia. I developed the sleeping disorder shortly after my cancer diagnosis November 4, 2016...even though I rarely worry...somehow the news still disrupted my sleep. It had improved by the time I started taking tamoxifen, but it ramped  back up once the cancer drug entered my system.  Who knew you could survive AND function on poor sleep for a year-and-a-half? Moms of Irish twins, that's who. But I'm also living proof.
 
Most women who experience SEs from tamoxifen complain of stick-your-head-in-the-freezer-inducing hot flashes. Or weight gain. Those seem to be the most common. I only had mild night sweats which completely went away once I started splitting my dose in two, taking 10 mg. in the morning and 10 mg. at night - with my oncologist's blessing. Also, I lost weight, but maybe it was from all the exercise? Or the trazodone I took for insomnia? Or the fact that I was depressed and didn't have an appetite? Or all of the above? (For the women who experience weight gain, I wonder if it's from the tamoxifen or the anti-depressants they get prescribed for the hot flashes.)
 
EVEN with the SEs I endured, I considered them manageable, especially as time went on. Was thinning hair and watching myself age 10-15 years over a period of two months distressing? Yes, but not enough to cause me to quit. Besides, we all know true beauty originates from within. Did I like waking in the middle of the night with painful leg cramps? No. But thankfully taking magnesium before bedtime nipped that in the bud. Sometimes my left calf would ache deep in the muscle, but I found that if I went to the gym and walked or used the leg machines the dull pain disappeared.
 
And OH! Who could forget the brain fog? Well, I could, because I forgot practically EVERYTHING while on tamoxifen. I left the oven on more times than I could count burnt toast. I don't even know if that makes sense. I would record one minute's worth of audio for my radio show and by the time I finished I couldn't remember if I had made a mistake during the 60-second recording. So I'd have to review it.

Here I am in my home studio recording the book Joy Is Contagious...Cancer Isn't. I'm still recording a daily morning show for KTLF as well as audio books and liners for a production studio in Colorado. With all my projects and 3 kids I stay pretty busy. But I manage to squeeze in time to surf the net for the latest in breast cancer research.

But, we all just laughed at my absent-mindedness knowing it could be so much worse. I was thankful that there was a medication I could take that avowed to give me more years without a recurrence. So why would I quit a drug that has been saving women's lives for 30 years?
FINALLY you're about to hear the rest of the story.

Wednesday, March 28, 2018 I awoke at 3 am with my heart racing and my right arm completely numb. I placed one hand over my chest with the other palm down on the sheets. They felt wet. Soaking wet. But I knew they couldn't be, that my perception was somehow off. I started smacking my husband's arm to wake him because I knew something was dreadfully wrong. When he finally opened his eyes I told him, "My skin, my skin, my skin!" I was trying to say, "My heart, my heart, my heart!" but the words tumbling out of my mouth were all wrong. I finally grabbed my wrist to indicate for him to get our blood pressure cuff. My blood pressure if I remember correctly (tamoxifen brain lingers, folks) was 90/55 or 60 and my heart rate was 117. Now, 117 is barely fat-burning mode on a treadmill so maybe that's not dangerously high, but it shouldn't be that elevated while sleeping unless a grizzly bear in your dreams is about to eat you. Even then, I don't think it would raise your heart rate to that extent.

If you're still reading this, I'm assuming it's either because you're my mother or you're struggling with whether or not you should quit tamoxifen. I'll just say it right here that I would never encourage anyone to quit taking any drug without first discussing it with your doctor.

It wasn't until daylight came that I wondered if I had experienced a TIA, or mini-stroke. I was dizzy and remained light-headed for nearly a week. My finger tips also went numb later the same day of the incident. Because I didn't go immediately to the hospital, there was no way of knowing what happened. But I knew that stroke was a potential SE of tamoxifen and that my dad had had a stroke in his 60s, putting me at a slightly higher risk.  Lots of research and two days later I took my last pill.

Do you know how to determine if someone is having a stroke? Familiarize yourself with this chart.

I later had an MRI that ruled out a full-blown stroke and brain cancer (thankful for that bit of knowledge) but soon discovered online - where you can trust everything you read - that MRIs can't detect whether you've suffered a TIA. So, the cause of my strange symptoms remains a mystery.

Now, back to my discussion with my oncologist at CCI. She understood my concerns, though she didn't think based on my age, risk factors, etc...that my symptoms were stroke-related. And while she'd prefer that I stay on tamoxifen (risk of stroke while taking it is small) my risk of recurrence in 10 years is also pretty small. Six percent chance if I take tamoxifen for the full five years, and according to an online cancer calculator, 10% chance of distant recurrence in 15 years if I do nothing. While I'm not a huge numbers person, there doesn't seem to be a huge difference between 6-10%. Some would differ, I'm sure.

I've had friends tell me they'd be too afraid to quit, and yet I'm too afraid to stay on it. Though I'll be the first to admit that if my cancer were more aggressive I'd probably still be taking it while reciting my prayer that I've said from the beginning, "Lord, please take this pill and use it to keep cancer away with minimum SEs. In the name of the Father, and of the Son, and of the Holy Spirit. Amen."

In the end, my oncologist said she wouldn't lie awake worrying about me at night...and would continue to check on me - not as often, of course, since she doesn't need to monitor tamoxifen's SEs. Then she gave me a hug before she exited the room. She's great, huh? No finger wagging, belittling, name calling, eye rolling, hair pulling, firing, etc... Just two adults sharing their concerns and mutually respecting the decisions that were made.

So now what? It's a little unsettling that I'm not taking anything to fight rogue cancer cells that could be setting up shop somewhere in my body unbeknownst to me. But for now I'm simply trying to eat right, take supplements, and exercise...alongside a ton of research on the best ways to fight ER/PR+ BC naturally.  Could I live to regret this decision? Maybe. But I don't think so because it goes back to Philippians 4:8:

"Finally brothers and sisters, whatever is true..."

What is actually true can't be found in a sea of what ifs, so I don't plan to wade in those murky waters. I'm not a soothsayer who can predict the future, so whatever is true is solely what I know with certainty today.   And I can tell you that what's true at this moment in time, is that tamoxifen isn't right for me.