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I pray this genetic mutation ends with me and my living legacy: LIVE, Educate, Equip, and Empower others who have been impacted by cancer.

By Ashley Dedmon  

(Blog Part 3) 

Over time, my story has evolved from the hardest time of my life to discovering my life’s purpose. Only God knows my ending, and through His strength and my family’s support, I will continue to educate others and equip them with the tools and resources needed to make informed decisions regarding their health. My mother’s battle is my battle, so my daughters do not have to battle. I pray this genetic mutation ends with me, and I plan to LIVE and educate others along the way. If you have been blessed with the gift of knowledge and experience, you must gift it to others.? 

From 2016 to the present, I have enthusiastically worked in my community as a Patient Speaker with Myriad Genetics, where I speak to physicians about the importance of genetic testing in their practices and other healthcare professionals on the importance of screening for family history. In this role, I enjoy speaking with survivors, fighters, and caregivers about genetic testing and reduce cancer risk for their family members and the next generation. I believe it is important to educate the next generation on the importance of personal and family health history, early detection, and self-care, to be equipped and empowered to make informed health decisions. 

In 2018, I authored “The Big Discovery.” The story of a breast cancer diagnosis serves as an educational tool to assist families and children navigating through a breast cancer journey. I was inspired to write this after my journey as a young child with two parents with cancer, my own journey as a BRCA2 previvor, and a mom. This resource aims to help facilitate one of the most difficult conversations a mother could have with her children to help them understand the importance of early detection, testing, and a breast cancer diagnosis. The treatment process is introduced but is left open so families can navigate through their options and make informed decisions. “The Big Discovery” is a resource for non-profits, hospitals, and other cancer organizations. The book’s foreword was written by board-certified breast surgeon Sandra Templeton, M.D., of Houston Methodist Breast Surgery Partners. 

In 2018, I was also asked to serve as a cancer research advocate. As a research advocate with Houston Methodist Research Institute, I work with researchers to ensure high-quality research that is sensitive to the priorities of cancer patients. I also aim to break down programmatic silos by identifying common themes, thorny issues, capacity building strategies, metrics and measurements, and new engagement models. There was a time I did not see myself in scientific research but I have developed an intellectual curiosity and the constant quest for medical cures and health equity in the African American population continues to drive me and my work. I serve on various health equity projects and committees, and I believe everyone deserves a chance at achieving optimal health and to do that, we must eliminate health inequities and health disparities. We must keep moving that needle! 

I am an active member of the National Cancer Institute (NCI) and National Institute of Health (NIH) Physical Sciences-Oncology Advocacy Network, Texas Breast Health Collaborative, The National Breast Cancer Coalition, the Penn Medicine: Basser Center for BRCA Young Leadership Council. I actively volunteer with Susan G. Komen Houston on breast cancer projects and Facing Our Risk of Cancer Empowered (FORCE) as a peer navigator. 

In 2019, I delivered a TEDx Talk (The Generational Impact of Cancer: BRCA2+), where I discussed my family history of cancer, my experience as a young caregiver which led me to genetic testing, and the impact it had (and continues to have) in my life. I shared my most vulnerable thoughts after losing my mother, hearing of my father’s diagnosis, and finding out I was BRCA2 positive. I shared my ten years of aggressive monitoring and what led me to have a preventive double mastectomy and the emotional and mental impact it had on me (my womanhood, motherhood, my self-confidence, inability to breastfeed, intimacy, etc.). Finally, I discussed how I overcame the emotional and mental impact of my parent’s diagnosis, navigating through my own journey and how I have been positioned to Educate, Equip, and Empower others who have been impacted by cancer (fighters, survivors, previvors, caregivers, and supporters).? 

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Annie Bond Teaches us the Importance of Laughter

My name is Annie Bond. I was born in Wimberley, TX. I went to college in Austin, TX, and spent most of my childhood and young adult years making people laugh. I love theatre, competitive speech, dancing weird, and most of all, doing improv and stand up comedy and filming sketches with my friends. I have dreamed of moving to Hollywood to become a famous actress since I can remember, and I moved to Los Angeles 3 years ago to do just that. I even found a really great boyfriend who loves me, and also saved my life by finding a lump a breast one day. I turned 26 shortly after that, lost my health insurance, and spent months trying to find a plan that worked for me and ACTUALLY covered any type of mammogram or ultrasound for a 26 year old woman. I’ll tell you know, most of them don’t, but it’s worth the expense. I had no family history of breast cancer, and my sister had had a benign lump removed just a few years before mine showed up. I had no reason to worry…

On August 5th, 2015, I was diagnosed with breast cancer, and it had already spread to my lymph nodes. I immediately spent a month in the hospital, and had pretty much every MRI you can have, along with PET scans, CTs, a liver biopsy and a bone biopsy. All of these tests showed that the cancer had spread to a singular metastasis in my liver. I was 26 years old, feeling as healthy as can be, but my body had been invaded by ER/PR positive, HER2 negative, Stage 4 Metastatic Breast Cancer. Or an alien probe. I still think it might just be an alien probe. I immediately saw a fertility specialist, and froze 13 eggs with the help of a GoFundMe that my parents and friends set up. Insurance also doesn’t cover loss of fertility at 26, but its again well worth the money if you can swing it. I saw multiple surgeons and doctors, but finally found my cancer fighting soul mate in Dr. Waisman at City of Hope Hospital. He started me on a big shot in the butt of Lupron, and I took Tamoxifen for 3 months. My tumors were shrinking, but not fast enough, so we changed the cocktail. I have been on Lupron, Ibrance, and Letrozole since then, with a weekly punch of Vitamin D. Goodbye grapefruit, hello hot flashes and night sweats! The tumors became more responsive to treatment, and I made dietary changes, since as cutting back on sugar and alcohol.

I have not stopped pursuing my dream since my diagnosis, and have in fact been working towards it harder than ever. Cancer made want to run away from my dreams, made me feel hopeless, but comedy makes me feel strong and capable. I know I will be fighting this stupid disease until science can cure it or my body rids itself of it, and I would much rather fight through laughter than tears. I recently had a robot assisted laparoscopic resection of my liver tumor, followed by a lumpectomy with some lymph node removal. The good news is that they got all the tumors out, and I will start six and a half weeks of radiation soon. I expect to be celebrating with no cancer in my body shortly after that. If you ever need a laugh, go watch my YouTube videos, or do some awkward dancing by yourself!

 

Join us on the second podcast episode of Tigerlily Foundation?’s MY LIFE Matters as Host, Erin McCarthy Azuse chats with Annie Bond about living with metastatic breast cancer while pursuing her dreams of being a comedian.

 

Available on iTunes

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Scan-xiety

It all starts with “it’s time to schedule your scans again” this is when I turn into a fading flower.

I was this vibrant, I can conquer the world, F cancer type of person, then it all goes downhill as each day and moment gets closer to scan day. I literally wait 4 days before I can even muster up the courage to schedule the scans.

Scan-xiety (scan anxiety) is a term those with cancer is familiar with. When you have cancer no matter the stage, you have to get some sort of scan of your body to make sure there isn’t any cancer progression rather it be a MRI(brain, breast, back etc.), bone scan, ultrasound, CT,&/or PET scan.

Why do we freak out??!!? Welp, it’s simple. I don’t like the fact a machine is looking for something or finding anything else in my body that even blinks cancer. When you have stage IV metastatic breast cancer the goal is to keep it contained in the current locations. You want it to “stop freeze” remain where you are and be silent or shrink in that same location. Don’t you MOVE, not even one inch.

This scan process occurs typically every 3 months. The time from making the scans appointment until the day of reckoning (results) with your provider, is scary as hell!!!Why? Why get all worked up about it?? It’s just a diagnostic study…

Let me paint an image of how stressful this process actually is. The week before the scan you get pre-scan syndrome. Nerves going haywire, every ache and pain you feel, you think its progression which leads to you paying closer attention to it. Is this new? Have I felt this before? Did the pain heighten? Irritability, frustrations and freak out mode sets and it don’t go away until you receive the results.

The night before the scans there is no sleep, insomnia is your friend. I start to ponder on my previous scans and try to remember the image so IF I even get a glimpse of my scan image I can try to identify if there is a “new” spot.

The day of the scans is an ALL day process. In addition to the anxiety, you are restricted from eating, you have to drink contrast, your cold, you have to fill out paperwork with repetitive questions, and you may have to deal with people who have an attitude when they check you in while your silently cursing them out in your brain, “look, dang it…I have cancer and I’m scared as crap your making it worse”. Being outside the oncology department can be a daunting process because the sensitivity level decreases drastically.

I usually have 2 scans scheduled that day, sometimes 3 if it’s my year for a MRI of the brain scan. After getting an IV, I get injected at the nuclear medicine department with this substance that I call “Hulk juice” it’s the same gamma rays used to turn hulk into the angry green man. This radioactive dye is attracted to all the cancer spots in my body new and old. I then have to wait 3 hours and drink tons of fluids so I can get a full body scan from head to toe which is similar to getting a 45 minutes long x-ray. You have to lay completely motionless in this freezing cold room. If there are cancer present in the bones, the spots will become brighter on the images. This is an image of one of my actual bone scans.
After the “hulk” injection I am now radioactive for 3 days meaning I could set off the metal detectors. Once I am done with the injection I go over to the CT department and obtain my “lemonade” flavored contrast drink. It’s about a liter of fluid that I must complete within 2 hours. During this time I am still starving from hunger. Once I return after 2 hours to CT, I am then lying in this noisy machine that has me hold my breath multiple times and injected with IV contrast that makes me feel like a hot fire pit and as if I peed myself. This is a 10 minute process but a lot is going on at once.

All my scans are now completed for the day, I am very loopy because I needed anti-anxiety medications to keep me calm and lying still. This day takes me 6 hours and leaves me hungry and exhausted. I return home and is now nauseated from the contrast and I occasionally vomit. Then we WAIT…wait…and wait… until results are received and this could take potentially 2 weeks. So you worry for 2 more weeks. The results will be the cancer is stable with no progression or we have new cancer spots which proves we have progressed and will now need a new treatment regimen with a whole new set of side effects. YAY!!

It’s hard to overcome this emotion but you do your best, this procedure has to be done. Find ways that will ease you. Bring a friend, watch some Netflix while you wait to keep your mind off things, ask for warm blankets (that always make me feel warm on the inside), get a prescription for anti-anxiety medications so you can just sleep through it, or ask to listen to some music in the room.

This is why we fear the scans and how it gives those with metastatic breast cancer Scan-xiety. We must endure this for the rest of our lives, until there is a cure for cancer. We will bloom again!!