#voicesofMBC is my social media campaign to bring awareness to metastatic breast cancer and to lend a platform for those afflicted with this illness to be heard. Every Monday, until the end of the year, I will share a personal testimony or story of a woman (or man) living with stage IV breast cancer.
Today’s kick off interview is with Tonie Jones. Tonie and I belong to an amazing group of advocates in partnership with Living Beyond Breast Cancer. She is beautiful inside and out and I am honored to share her story with all of you.
Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?
Before my diagnosis I was a busy single mother of three girls. My daughters were 20,16 and 3 at the time. I had spent the last few years switching careers. I left corporate work to start working full-time in the beauty industry. It seemed like I was just getting back on track. I loved my job and my girls were busy finding their place in the world. My oldest was in her second year of college. My middle daughter a junior in high school and, my baby was just beginning to experience daycare. As a family I felt like we were in good place. I had also changed my diet and became vegetarian that year. I lost a ton of weight in less than a year. I was feeling really good about that.
Tell us about your current treatment and its side effects.
I finished 6 rounds of chemo and, 32 sessions of radiation in January. I had a double mastectomy without reconstruction last August. Now I’m on Arimdex. Each treatment had it’ s own side effects that I hated. Chemo was the most physically taxing. Radiation to me was mentally exhausting. Getting up to go to radiation everyday really caused a strain on me. But, the Arimdex. I think that is the hardest. I have excruciating bone and joint pain. I wake up in the morning feeling like a 90 year old woman. It only improves slightly through the day. There have been quite a few mornings when my Mother has had to help me out of bed. Those days are the worst. I try not to let my girls see too many of those mornings. At times I sit and I try to remember the time, before all this started, before my diagnosis. But, that time has already slipped through my memories. Now, I can’t remember the days before I was always in pain. I hear it doesn’t get better with Arimdex from here. So I take it all in stride. Day by day.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
The answer is, “how hasn’t it?” Cancer is really a double edge sword. Of course, there is the obvious. The things that come to mind first; chemo, radiation, no longer having breasts, and the fatigue. Constantly being in some form of treatment and, always going to the Dr. It has definitely changed in those ways. But, then there were the ways I didn’t imagine. Not being able to work full time again, an almost non existent social life, a host of new life anxieties that are not cancer associated but have seem to crop up since cancer. Like being around new people. But, at the same time there are the great things. I have met some awesome people on this journey. Incredibly strong and resilient people. My heart has grown for people in general. I feel like cancer has made me kinder and more aware of others. I am always looking for connection. How can I help? What can I do? for someone else. I appreciate time more. Life now is about moments and memories before, it was bills, kids and worries. For me it was has been both. I had a pivotal moment after radiation. One morning after a shower while drying off and looking in the mirror. I stopped and looked at myself. There was a tiny fro of hair, my altered appearance, no eyebrows and lash sprouts. I thought if underneath it all this is going to be you from now on. You need to start figuring out to love and accept her. I think I started working towards making it better after that. The rest was progression. I’m still working on that part.
How do you live your best life now, thriving with a metastatic diagnosis?
I’m pursuing my dreams. I stop making excuses not to do things especially when it comes to times with my girls. I’m also trying to tackle some fears. I guess I don’t really want to live with self imposed limitations. I’m trying to more in the now.
People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing people have said to you in regards to having cancer?
Hey, but you get free boob job!!!! LOL. I also really hate. The I thought you were done with all that(in regrards to treatment). As of yet I haven’t had reconstruction and I’m still on the fence on it. Even still it isn’t like new breast is my conciliation prize for having cancer. Breast cancer isn’t as clear cut as it has been painted to be. But, I can’t get mad. I can’t say I really understood before my diagnosis. I was diagnosed at Stage IV. There wasn’t a progression or a reoccurrence that may have helped people around me to understand more. The other thing is “you look great you must feel wonderful”. People often like to gauge how they think you feel by how well they think you look. The two definitely do not go hand in hand.
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?
This will probably be my most unpopular answer. No, I don’t. Although, MBC is a different animal. Breast Cancer is a difficult journey period. I have met many women who lives are not the same even without a reoccurrence it’s like they are still fighting the disease itself but, mentally. Awareness is awareness. In the end it gives me a platform to tell my version of the story which isn’t wrapped up in that pretty pink ribbon. It would be great to have a platform all our own. But, we have to start somewhere. I remember a time when Breast Cancer as a whole didn’t receive much awareness. I would like to see some verbiage changed. I do cringe a little when I see the words “Survivor”. I would love to see the words “forever fighter” introduced.
What do you want people to know about YOU and your life living with this disease?
That it’s much harder than it looks from the outside. The toll mentally and physically is hard. I wish I could find a more eloquent word. But, that is how it feels … HARD. But, I’m living and fighting everyday. I am also trying to enjoy life. I am enjoying life.
What are three words that describe YOU.
I AM HERE
.. I’m here and I’m living life everyday I can to the fullest with MBC until I am not here anymore.
Share with us your favorite quote:
“You must take life the way it comes at you and make the best of it.” The Life Of Pi
Tonie Jones is a 44 year old Makeup Artist and single mother of three. She was diagnosed with Stage IV Mestatic Breast Cancer in March of 2014. Tonie is hoping to bring awareness to life with Mestatic Breast Cancer by sharing her story and partnering with Living Beyond Breast Cancer as an advocate.
If you would like to connect with Tonie you may do so here on her Facebook page: Saying Tata to my TATA’s.
We would love for you to share Tonie’s story to your greater community. If you want more ideas on how to partner with our #voicesofMBC movement, please visit this page of ideas.
Until next week……..