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.
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.
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.
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.
Reconstruction and restoration are the name of the game in the world of breast cancer. Reconstruction rebuilds what was physically taken away while restoration gradually occurs as your heart and mind mend, affirming everything really will be OK.
Restoration also breathes new life into vintage sheets and scraps of metal until they resemble the vehicles they were designed to be.
... And on rare occasion, you discover that the world of breast cancer and classic cars intertwine.
Today I found myself at the 30th Annual St. Ann's Seafood Fiesta and Big Fish Car Show in Decatur, AL. I found myself there because my husband organizes the car show portion, so it's kind of a must, even if I would have preferred to fold laundry while watching The Crown. But had I gotten caught up with Queen Elizabeth and my fitted sheets I wouldn't have met Michelle Baker, the proud owner of a 1971 Chevrolet C10 that's designed with a message.
I chatted with Michelle for awhile and learned she had always wanted an old work truck, but once she got one she decided it should do more than haul stuff. Having a functional truck was great, but having one with a sense of purpose was far better.
You see, breast cancer has taken several of Michelle's family members and she's experienced a few scares herself. She understands first-hand the importance of mammograms and early detection, and knows not everyone can afford them. That's why her truck proudly displays decals that honor women who've died from breast cancer, are fighting breast cancer, or need that gentle reminder to get a mammogram. One of the vinyl decals is for the website Joy to Life, an organization that helps cover mammogram costs for under-insured women.
For a small donation, she'll add your name, or that of a loved one, onto the side of her truck. All the money goes to one of a couple of organizations geared toward research and early detection. She said she hopes over time to see more names honoring women who are fighting than those who've died, a small indicator that we're winning the battle.
It amazes me how many people have been touched by breast cancer. And even more amazingly is how once you are, you're driven to do something about it. No longer can you sit in the comfort of your living room, shaking your head, thinking, "Oh, that poor soul. Hope she makes it." You find yourself asking, "What can I do to help that person make it?" I've felt so supported on this journey, and if you're on it, I hope you do too. I've discovered there are lots of Michelles in the world, they just don't all have a truck as eye-catching as hers.
I nabbed this pic from Michelle's FB page because I failed to get a wide shot. You'd think after years of shooting video where "wide, medium, tight" were drilled into my head I would have remembered to step back for a wide angle, but no. I'm more of a lost in the weeds type who overlooks the big picture. Oops!
Thursday morning I was having a rough start to my day. Tears fell while wrestling with a decision, combatting confusion, dwelling on life's disappointments, all struggles that were compounded by neglected quiet time, if the truth be told.
Early that afternoon once I finished my work for the morning I pulled myself together and readied myself to pick up the kiddos from school. Finally dressed in something other than sweats and with reapplied makeup I got in my car to leave home when I remembered I'd need more gas if I didn't want to find myself stranded along the road...and I'm not into hitch-hiking.
Sunshine filled the sky that day accompanied by near-summer temperatures. "Something to be thankful for," I thought.
As I pulled into the MAPCO near home the back of a man pumping gas caught my eye, causing me to press on the brakes to get a closer look. My eyes remained fixated on him as the tears began welling up again.
That man. His hair color and cut. His height. His build. His stance. His dark-colored plaid shirt and jeans. EVERYTHING about that man looked like my dad who passed away four years ago. I mean EVERYTHING. I slowly pulled toward the pump next to him in disbelief with an intensified desire to speak with Dad. He'd know how to brighten my day with the right words and a warm, fatherly hug.
As I began pumping my own gas, I peered through the side windows of his empty, black, 15-passenger van trying to get a better look. "Does his face look like my dad's too?" I wondered. After eyeballing him for incredibly too long I decided to walk over to him and say hello.
"Hey!" I said. "Sorry if you felt me staring at you, but I couldn't help but notice you look like my dad who passed away a few years ago. I just needed to get a better glimpse of you and say hi."
He gently smiled, like my dad would have done, as I proceeded to tell him that he was obviously younger than my dad but the resemblance was still remarkable. I'm sure he felt some relief that I didn't think he was old enough for me to be his offspring. Though I found out technically he was.
"You know," he slowly began to respond, "I'm sixty-eight now, but my dad passed away when I was twenty." He choked up a little at those words before continuing. "And I was angry at God for many years for taking my dad at such a young age. Then one day I took a close look at 2 Peter 3:8. Do you know what it says?" he asked.
Beloved, do not let this one thing escape your notice: With the Lord a day is like a thousand years, and a thousand years are like a day. ~ 2 Peter 3:8
He quoted the preceding passage then asked if I was a Christian. I told him, "Yes" as he whipped out his iPhone and opened up his calculator app.
"How many years would be a good life to you?" he asked me.
Had he only known the way I felt in that moment, that I could drop dead at any minute and not care, he probably wouldn't have asked. But I mustered a grin and simply said I had lived a fulfilling life and wasn't sure. "Give me a number," he insisted.
"Another thirty years would be great," I reluctantly replied.
He then started plugging in numbers...30 divided by 1,000 multiplied by 24 plus ??? I started getting lost in his calculations. I'm not a numbers person.
"Look at this!" he joyfully exclaimed. "According to this, you'll see your dad in about 45 minutes based on Heaven's time. Have you ever thought of that?"
Well, yes, I've considered that with God there is no time and whether we die at age 8 or 80 it's a nano second compared to eternity. But I had never looked at it in light of a literal interpretation of 2Peter.
"Your dad is going to turn around and say, 'Oh, there you are!' as if you've only been out of his sight for a short while."
I thanked him for that perspective, telling him how happy I was that I had gotten to meet him then returned to my car with his words still whirling around in my head.
As I drove away there was something about that encounter that seemed Divine. I appreciated his message, that I would see Dad soon. But I think the more valuable lesson for me that I needed to hear that beautiful afternoon was that our time here is so short and that I really need to cherish it. To live like I'm going to see my dads - both my earthly and heavenly ones - in 45 minutes. To allow myself to wallow in sadness is a waste of precious time when I have so many things to be grateful for and to live for. Not sure why I need to be reminded that life is a gift, but sometimes I do. And I was thankful for the reminder that came from a total stranger that day.
After I drove off, I thought I should have snapped a picture of him - at least from behind - and glanced at his license plate. It probably said ANGL1 or HVN-SNT or something to that effect. You never know. One thing I do know is God intervenes in ways only He can when we most need Him.
Oh, and if you're wondering, the man's face slightly resembled my dad's. What are the chances?
Funny that the title "Author" appears above this description yet I have no idea what to share about myself in this space! How about my first name is Kim. My last name is Tisor. Tisor rhymes with miser, though I try not to be one.
For more information about me, please visit the author page.