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Throwing in the Tamoxifen Towel

5/4/2018

13 Comments

 
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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.

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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.

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

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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.
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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.
13 Comments
Nicky Saturley
5/5/2018 11:23:06 am

I read the whole thing, and I am not your mom, nor am I on Tamoxifen . I do care very much for you, and I have friends who are on the drug. I like your thought processes and I think I probably would have come to the same conclusion. You do communicate clearly and well.

Reply
Kim
5/5/2018 02:01:21 pm

Thank you, Nicky, for reading the entire post! It's never an easy decision, but we're all faced with hard question at some point, right? And we consider all the factors, make a decision, and live with the outcome knowing we did our best with what we knew at the time. I'm glad that it made sense...because sometimes I wonder, lol! I hope you are well!!

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Robbie Smarr
5/5/2018 08:04:30 pm

You never cease to amaze me. Thank to for your transparency, authenticity and humor. It helps others to be courageous in their walk and decision making. Love you, friend!

Reply
Kim
5/6/2018 09:15:15 am

Robbie, thank you so much, friend! I know you're doing exactly the same in your journey. Cancer is an easier pill to swallow (no pun intended considering the post) when we're able to help others with our story. Blessings to you & hugs from Alabama!!

Reply
Mary Pearsall
5/6/2018 08:22:20 am

Read the whole thing! I have a dear friend going through chemo for BC and she and she looks to me for medical advice. I have been following your journey and you inspire me. This gave great insight. You are a gem sister.

Reply
Kim
5/6/2018 09:17:50 am

Hey, birthday twin! :-) Thank you for caring enough to read & follow. I know you're a strong tower for your friend fighting BC. It can be a scary place, but as you know, with Christ all things are possible...and I believe more tolerable. I remind myself that cancer doesn't number my days, but God does.

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Heather George
5/6/2018 10:34:08 am

Wow! What a story you tell...of truth! I can't even begin to imagine what you are going through, but you are definitely in our prayers! I'm praying for a miracle of healing...like in what happened to precious Annabel Beam in "Miracles from Heaven"! You've seen that movie, correct? I just watched it again the other night with my townhouse "wall" neighbor...she hadn't seen it yet & I have it saved on our DVR. I wept again...I've seen it numerous times! God is still the God of miracles! Love & big hugs

Reply
Kim
5/7/2018 08:57:57 am

Hi, Heather! Thank you for commenting! Really, I am doing well. So much to be thankful for...but I'll always take people's prayers! Especially yours :-) I've not seen Miracles from Heaven but would like to. I believe God still performs miracles today...and sometimes the best ones aren't even physical but emotional. Like receiving His peace in the midst of difficult circumstances. Much love to you!! ~ Kim

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Suzanne Horsley
5/9/2018 11:49:39 am

Kim,

Although I am a breast cancer survivor, I will never be required to take tamoxifen due to my breast cancer receptor. With that being said, your candidness is so important for people, not just breast cancer warriors. Thank you for allowing us a glimpse into your breast cancer journey. Much love, my friend!

Reply
Kim
5/11/2018 09:46:44 pm

Suzanne, your words mean so much to me because of my deep admiration for you! You've endured more than most and yet maintain such an amazing attitude. Let me know if you ever want to be a guest blogger and share some of your journey - YOU are an inspiration! Much love to you, too!!

Reply
Sandy
7/5/2018 05:13:38 pm

Hi Kim,

God bless you my friend!
Like you, I have been diagnosed with BC in May 2013, I had ER/PR+, 0 lymph nodes, lumpectomy and radiation, Oncotype helped my oncologist to decide that I do not need chemo, but had to take Tamoxifen. So I started Tamoxifen, but after 2 months I had a severe skin rash that we both agreed that Tamoxifen was not for me., besides that I felt a lot of pain on my lower abdomen, especially when siting, like I was siting in a stake. Had a pelvic US and they confirmed that Tamox. was really causing my problem in my lower abdomen. Then she switched me on Letrozole, but reading the SE I was afraid to take it. I am OK today, after 5 years, but changed my life, I am taking Vit. D, DIM, flaxseed oil, Calcium D-Glucarate, I am massaging my breasts with essential oils (Frankincense, Cannabis, Tsuga and Clove) you have to dilute these EO because they can irritate your skin. I drink daily a tea I make with cloves, ginger, lemon and turmeric (root). Since I started this regiment I have never gotten any colds/flu and my immune system became strong. I do exercise and pray daily. Hope this would help others too. Just be informed and make a decision based on all the info you have, most of the doctors prefer to put you on medication and would not discuss the SE.
It is not an easy decision to quit your medication, but my mother had BC too, she did everything the doctors told her to do and after 4 years it came back much more aggressively.

Reply
Kim Tisor
7/6/2018 06:39:26 am

Sandy,

Hello, and thank you for your response! It sounds as if you & I were cut from the same cloth. We had similar diagnoses, issues with the Tamoxifen, and are relying on nutritionals to keep us healthy. I, too, take vitamin D and DIM, and use Frankincense oil. I have turmeric, but I'm not good about consuming it. It won't work if you don't actually ingest it, lol! I haven't been regular with my exercise lately either - shame on me - but I hope to get back to the gym very soon.

I'm so glad you found me here and chose to share some of your story! I know I haven't blogged much lately due to time constraints, but hopefully I'll begin posting here and there again soon.

I wish you many blessed & healthy years ahead, Sandy!

Reply
Sandy
7/6/2018 08:37:17 am

Thank you very much Kim, I wish you many happy years of health and joy, free of any form of C. God bless us all !!!

xox, Sandy


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    Author

    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.

    Working in Christian radio earns me a little spending money so I'm less miserly and fulfills my desire to uplift others who are walking (or limping along) this sometimes arduous road we all call "life."

    What can you expect from this blog? Well, I'm not exactly sure. I think I'll include faith-related content and posts about joy discovered while on  my cancer journey. I may share cancer-related news and as a wife and mom I'm fairly certain observations pertaining to family life will seep in here on occasion.

    As you visit, remember that Tamoxifen Brain is a real thing and I'm convinced I have it. So, if something I write doesn't make sense, feel free to laugh at me.  I won't know any better and laughter is good medicine, especially when it's at someone else's expense. That's a joke.

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