Ridin' the Tamoxifen Coaster!

Updated: Feb 13


By: Edoabasi McGee, PharmD, CPS-MH

Founder of SEW Mental Wellness Coaching



STEPPING UP TO RIDE: HOW IT STARTED?

I have been off Tamoxifen for 2 years now because I got to pause it, while trying to get pregnant ….then I got pregnant (#babyaftercancer) and gave birth to my miracle baby (#supergrateful). Let me share with you my resumption journey. First of all, I was diagnosed with triple positive breast cancer in March 2017 at the age of 33 with a 3 year old. My active treatment plan consisted of 6 cycles of chemotherapy, surgery, and Herceptin for a year. My maintenance plan was Tamoxifen for 10 years (yep if you are doing the math in your head, I will be well into my 40s before I stop taking Tamoxifen, and that's if I don’t take anymore pauses!). When I started Tamoxifen in November of 2017, I had discussed with my oncologist that I wanted to have a second child and she told me that I would have to be on the Tamoxifen for 2 years before pausing it, to try and get pregnant. Therefore, I couldn’t wait to come off Tamoxifen to try and get pregnant.


REFLECTING ON THE RIDE

Reflecting back, I was pretty excited to be coming off Tamoxifen, I experienced severe mood swings for days with a supersized side of hot flashes. For example, I would wake up some days feeling like I wanted to slam a “silly hoe” into the concrete floor one minute and the next minute hide in my closet in the fetal position rocking back and forth…. yep the ultimate mood destabilizer had me riding the Tamoxifen roller coaster! I remember one day, a coworker asked me to explain why I always said Tamoxifen, a selective estrogen modulator, is the ultimate mood destabilizer (remember I play….(I have been) a pharmacist in my day job for the last 14 years). I explained it to her ……and when you are not a survivor, no matter how hard you try to understand the plight of a survivor, you just have no clue. I explained to my coworker how Tamoxifen caused severe mood swings …… she didn’t believe me, she just chuckled and gave me a look like, stop making things up… like she was saying, I am a pharmacist and I have read all the side effects of the drug and Tamoxifen cannot make you feel THAT bat shit crazy. (Let's pause here….until I was a breast cancer patient going through treatment, I probably disregarded some complaints of side effects my patients told me about as a pharmacist and tried to minimize their compliant…I pray those patients can forgive me….healthcare providers have to do a better job on believing ALL their patients….its part of the health equity work I do in my other role as a pharmacy faculty…..a training that many higher education institutions are trying to implement…..we have to believe our patients when they tell us their experiences because they are the experts on themselves….OKAY, rant over!) I say all this to say continue to tell your healthcare providers about all the side effects you experience with treatment, be it in active or maintenance treatment until they hear YOU!



PAUSING THE RIDE

Next……fast forward to 2020, Once I finally got pregnant after 6 months of trying, with a washout period for Tamoxifen I was dealing with a different type of hormone load with the pregnancy. Almost 6 months postpartum now, the hormone shift is settling and I just started to feel like my old self. I obviously enjoyed being off the Tamoxifen and that is why, I have dragged my feet, now having to resume it. After my miracle baby was born in August, I set up an appointment immediately with my oncologist to discuss my health. Side note: The one thing I am proud of myself was how I prioritized going to see my oncologist right after the baby was born because I did not want to repeat old habits like I did before….when my first child was born, I had new mommy brain for 3 years and skipped out on getting my mammograms until I thought I was ready for child number 2 and wanted to get healthy to start trying for child number 2 and breast cancer became an incidental finding….a rather big incidental finding that changed the course of my life forever.


I say all of this to say continue to put yourself at the top of your to-do lists, schedule your yearly health physical, your yearly gynecologist visit, your dentist, your therapist, all your age appropriate check ups!! PAUSE……..I want to make sure you didn’t fly by “YOUR therapist”, yep we all need talk therapy to help us unpack the mental toll

we have experienced from this panorama (pandemic)...the breast cancer diagnosis, honestly the daily realities of traumatic life events that have occurred to us all. Chances are you never learned how to process all the feelings and emotions that you encounter each day….I know this to be true because if we look at our world, we continue to see public figures act as if they were 2 years old having a tantrum, innocent killings, harm done to people by angry people, etc. Therefore, we ALL need to be in therapy unpacking and processing the daily realities of life.


Like Sherie Wilson said, “Everyone needs a therapist for their past and a coach for their future”, (shameless plug, join the waitlist for our 8 week coaching program on: Roadmap to your Wellness Recovery Action Plan on Your Breast Cancer Journey.)
RESUMING THE RIDE: HOW IT IS GOING?

OKAY….back to riding the Tamoxifen coaster! My oncologist cleared me to start back on Tamoxifen ASAP after the baby was born, since I had a double mastectomy and was not going to be breastfeeding. I tried to convince her, to let me try to lose some weight first and then start back when the baby turns six months…..I have an amazing relationship with my oncologist and she gets me….somehow, she talked me into meeting her in the middle and starting back on Tamoxifen in January instead of March 2022. However, here we are in February 2022 and I am just strapping myself onto the Tamoxifen coaster and I want to bring you all on this journey of resuming Tamoxifen!




In closing, I am bringing y’all on my resumption journey, mainly to shed light and normalize the daily realities of trying to maintain as a survivor in survivorship and taking a pill for 10 years. Also trying to make sure other survivors don’t feel alone in the realities of taking the ultimate mood destabilizer and feeling like slamming a “silly hoe” to the concrete, while wanting to hide and bawl up in the closet in the fetal position, all within the first 5 mins of waking up in the morning. I am willing to be transparent in my daily struggles with Tamoxifen as I try to activate my wellness toolbox to help me navigate the high drops and loops of the Tamoxifen roller coaster. I know no one person will have the same exact experience while on Tamoxifen but my goal is to share the similarities of experience and share some things I am doing to try to combat the ultimate mood destabilizer. Join me on this thrill of a roller coaster ride and please, buckle up because it is sure to be filled with elevated railways with steep inclines and descents, sharp curves and sudden changes of speed and direction. Lastly, I want you to know that, I am scared because I know how bat shit crazy Tamoxifen makes me feel but at the same time, I have done so much self development work and I have invested in myself, so losing my sense of self because of the ultimate mood destabilizer is non-negotiable. I am electing to use all my resources, tap into the deep self work, be intentional, give myself GRACE, prioritize selfcare, prioritize my mental health and be ready guns blazing to ride the Tamoxifen coaster! I am doing it scared, but I AM DOING IT! LETS GO (in my DJKhaled voice). Stayed tuned for more of my journey, I will be posting 1-2x a month, so be sure to subscribe or follow me on Instagram @asksewcancercoach for notifications when a new blog post is released.




DISCLAIMER: Although I am a pharmacist I am not YOUR pharmacist. All information contained in this blog is for informational purposes only, does not constitute medical advice, and does not establish any kind of patient-client relationship. The information provided in this blog is for informational purposes only and is not intended to substitute professional medical advice, diagnoses, or treatment. Always seek advice from your physician or other qualified healthcare provider before undertaking a new health regimen. Do not start or stop any medications without speaking to your medical or mental health provider.