“ Do as much as you can now, while you still can, because there will be a moment I can't”. ~ Shonte'
1. Can you share with our members what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?
My life before my stage 4 MBC diagnosis was fun, joyful, carefree, traveling a ton, in Nurse Practitioner School, working as a Labor Delivery RN,working 12hour night shifts. I'm an Army Spouse Hub’s was stationed in Korea and we were about to start his transition from Active duty to Reservist. Hubs & I were also planning to adopt because we had infertility issues for the past 5 years due to endometriosis. We tried IUI & IVF. Since I grew up as a foster child, it was my lifelong goal to adopt an older kid. After a certain age, 10 yrs old, it's harder to place in a family, I was in and out of group homes until my Aunt took me in at age 13. So I made a promise to myself to get sibling groups and anyone over age 5 to be placed with us. As I was awaiting my cancer biopsy results I waited to have the adoption application submitted until I received my “benign” results, or so I thought would be benign.
I've always had what they called “benign” issues with my breast since the age of 25,however since I wasn't ever offered a mammogram, or biopsy of my cystic lumpy breast, only ultrasounds. I believe I had early stage breast cancer that was completely ignored and denied further diagnostics. It started with nipple discharge the very day my husband returned from combat in Iraq. Nipple discharge started out light yellow, went to see a doc because I was not afraid especially since I was a Nurse, I wanted to catch anything early if I could. It eventually turned bloody, had the breast duct removed that had a small tumor called intraductal papilloma. The cyst I had was still large although I asked for it to be drained and biopsied, this was not done. 6-8mth after the surgery, the cyst turned hard and I knew at that moment it wasn't right, even though they tried to chalk it up to being “scar tissue”. I was having a cough, though it was allergies, had a limp on my left hip, thought it was sciatica, always had back pains, went to chiropractor, and I recently snowboarded, fell a few times and had a contusion to my right 8th rib, or so I thought. Turns out all those symptoms were cancer. This was found out through full body scans (CT/Bone) that was given too me due to the positive lymph node in my armpit. Thus I was diagnosed with Stage IV, MBC, De Novo with mets to my lungs, few spots in my spine, left hip and right rib, June 17, 2015 at the age of 31, six years after being dismissed and told nothing was wrong and not too worry because I was too young to get breast cancer.
2. What is your official diagnosis? (example - I have IDC ER/PR +, HER 2 - grade : 2 , Mets to bone. ) Tell us about your current treatment .
Invasive Ductal Carcinoma of Right Breast, ER/PR Positive, HER 2 Positive. Mets to the axillary lymph node, Left acetabulum (hip socket), Right 8th rib, T10, L4-5 of spine, & lungs 2-3 nodules.
Current treatment is still first line, Ibrance 75mg daily (was dose reduced twice due to horrible neutropenia), Letrozole daily, Zoladex injections monthly, Xgeva injections monthly (now reduced to every 3 months).
Had 15 rounds of radiation to left hip and rib in June 2015
3. How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
Cancer has given me even more reason to “Enjoy life”, I've lived by the motto before but now it's more intense. I have a better sense of time and how not to waste it. I don't stress over the things I consider small. I say the word “NO” more, I do things for me and volunteer my time to help others such as foster kids (I'm a camp nurse now), cancer advocacy. The pivotal moment was when I read that you could possibly live with MBC for 15-20yrs, of course I strive for more but it lit this fire of hope and life in me. I live with no regrets and I do what I say because why not? I have grown and continue to grow each day I'm here.
4. How do you live your best life now, thriving with a metastatic diagnosis?
Oh, this is my motto “Enjoy Life” & “ Do as much as you can now, while you still can, because it will be a moment I can't”. I honor my time and positive perspectives. I try to look at the silver lining in everything I do. I can't control this disease so I don't stress on things I cannot control. I have a farm, I have three businesses, I continue to work as Nurse Practitioner (limited), since I don't have children I share my time with 6 plus God Children, I snowboard, I travel, I still engage in small amounts of alcoholic beverages, I cook, I read and splurge time with my friends and husband. Everything in my life is worked around my cancer, not me working around the cancer.
5. What makes you most happy, and where do you find the most joy? Is this different from BC (before cancer)?
My joy has always been there, it's just more of a priority than before breast cancer. The thing that gives me the most joy is FOOD, it's my happy place. My favorite thing is to eat blue crabs ( I love seafood)!! If you're from the DC/Maryland area, you understand. Eating crabs is a social construct, you eat them with friends, over a good TV show, some music etc. So it really lifts my spirit. Fun fact, literally the day I was diagnosed, hubs and I went to get crabs. It's a guaranteed joy for me. I also enjoy Cooking.
6. People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing someone has said to you?
You dont “Look” like you have cancer, you look good are you in remission? Yup I do look great but I def don't FEEL good.
It's such a stigma of what you should “look” like while having cancer. Folks take advantage of my look and never account my “feel” and assume I still can operate the same as before cancer.
7. What did or do you find most helpful for those wanting to encourage or help you?
Offering me anything that helps in my day to day such as driving me to appointments. I now have a permanent person who takes me to all my scans. That's such a commitment it's so honorable. Those who help me not think about cancer, such as not asking me how i'm doing, or playing video games with me, or taking me out to eat, or not treating me so delicately . Those who see my cancer advocacy and think of innovative ways to get my voice heard to inspire others, I may not always say yes, but at least they think of me. My goal is to turn heads and change mindsets. Those who make me laugh. That's all I need in my day to keep me going.
8. Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
The pink tide is real, the early stage story is seen more prominent than MBC but it isn't more prevalent and that's where we need that distinction. I do now see some organizations increasing their efforts in MBC land but more can be done. Firstly nothing that is underserved especially MBC should be kept to just one month, shoot one day because MBC has 1 day out the entire month. We are such hidden figures. I try to be involved and make my little part impactful. If we get huge organizations that recognize MBC we can really help change the waves. Media is the largest influencer.
9. What do you want people to know about YOU and your life living with this disease?
I love my life, with or without cancer. I cherish the good and bad of this disease because I only grow from it. I want to live life as I am dying. I know there is a purpose in this, God is leading me and I am accepting it openly. Don't look at me and assume anything, because your assumptions will be crushed, good or bad wrong or right. I am a blank page each day I awake, what is written on it throughout the day, nobody knows. *but make sure you use gel ink pens, it's my fav :).
10: What is one “action” point everyone could do TODAY to promote awareness of MBC.
Speak about it!! The more we hear it, the more people know. Just how we are talking about pop culture and weather and gossip etc.
Support organizations that are trying to lead the conversation of MBC by donating your time and money.
11. Do you have a favorite poem, song, quote, or work of art that you would like to share with us.
Favorite Song that reflects me by the vibe the song gives and the word it expresses. I love my Life song by Demarco, my favorite lyric is “ Make a change, don't make nobody stress you” meaning Live your life while making a change and not letting anyone stress you about how you live because we don't know what the future holds, so live your life TODAY, no matter how bad it seems. The video visual is a true testament of how I feel. Check it out.