I spend so much of my day trying to push fear and anxiety out of my mind. I have struggled with this my entire life as someone who suffers from bipolar disorder.
I have battled depression for years. It first appeared shortly after I gave birth to my oldest daughter. I was diagnosed as having postpartum depression, post-traumatic stress disorder (relating to some childhood abuse) and bipolar disorder type 2. I am very open about this and while some people choose to hide it, I feel comfortable sharing it in the hopes that I can help someone else through my own story.
I’ve done a very good job of hiding behind the mask for years. Most of the time those who don’t know me closely have no clue I have a mental illness. Thanks to my buddy Lamictal (lamotrigine), my highs aren’t so high and my lows aren’t so low. Most of the time I live in a happy in between state.
Until September 25, 2018. When my doctor came in and told me, ‘You have cancer, but we won’t know what type until we do more testing,’ it changed everything. Most days it’s the first thing I think about when I wake up and it’s the last thing on my mind when I drop into an exhausted sleep.
When you have metastatic breast cancer, you live in a world of unknowns. In those early uncertain days it was ‘what kind of cancer do I have?’ Then once I learned it was breast cancer it moved on to, ‘what is my prognosis?’ Or ‘will this pain ever pass and will I have any quality of life?’
It’s amazing how much one six letter word can turn your world completely upside down. Just when you think you have everything under control, you realize you don’t have any control at all.
As a women’s health nurse and a cancer patient, I am in a unique position. I already was familiar with breast cancer, although completely clueless when it came to metastatic breast cancer. Maybe I have just been lucky to never come across someone with that particular diagnosis in the past.
I was bedridden during those early first days. I tried to find a way to occupy my mind with anything but that terrible word. I binge watched old TV series on Hulu. I played silly games on my phone. I boo-hooed on message boards. I tried to do anything to avoid thinking about what might happen to me. Sadly, there is only so much you can do when you can’t even get out of bed to go to the bathroom.
The worst thing someone newly diagnosed with cancer can have is too much time on their hands and a completely silent house. Magnify that by 500% in a newly diagnosed cancer patient with a history of mental illness. In the end I began I researching breast cancer, stage IV breast cancer, metastatic breast cancer, prognosis, survival rates….. Basically anything. The more I read, the more terrified I became. I became incredibly hung up on 22% survival rate at five years. I’m only 43. Will I even see 50?
At a time when I needed to stay positive, I ran into my good old friend anxiety. I’ve always struggled keeping my anxiety in check. I think and overthink things to death. I even end up worrying when there is nothing left to worry about. My doctor gave me a prescription for Xanax and I tried it, only to discover my anxiety was stronger than the Xanax was.
I sank into this incredible pit of depression. When my family wasn’t home I found myself having fits of uncontrollable crying, feeling as though my heart was pounding outside my body and I developed a chest tightness like I had never felt before. I began having terrible nausea and was unable to keep any kind of food down. I am not sure if it was from the new medications I had been prescribed or simply because I was so scared all the time.
I became anxious. Impatient. Scared of losing people. Overly tired even though all I did was sleep. And no matter how hard I tried to push those thoughts out of my mind, the more I tried the worse it got. Slowly I found myself pushing away people I needed desperately because there is only so long you can ride the crazy train before you finally take the next exit to maintain your own sanity.
I was ready to give up. I was done.
Then one day when I woke up I realized the sun did rise. I realized that even as dark as it was, there was still something to fight for. I realized that my life isn’t over until my final breath. I realized that all the time I had wasted in that terrible depression was time I could have used for so many things.
For me, that was a turning point. I realized at that moment I was going to have to find goals to keep me going, no matter how big or little those goals were. I realized that I needed to find something to push me to fight on during a time when I had allowed myself to sink into that dark hole.
I’ve worked very hard to set attainable goals in the months since then. First were things as simple as to get out of bed, then walk around the house. As I achieved the simple ones my goals became a little harder. Walk without a walker. Drive my car. And my happiest moment in the days since my diagnosis: take a trip to Arizona to see my baby sister and to California to walk on the beach.
That two week vacation was probably the most mentally healing thing I have ever done in my life. I took my time, absorbing everything around me instead of just driving from point A to point B. For the first time in my life I took the time to see all of the beauty in the world. Sometimes we get so caught up in our day-to-day lives that we miss so much. Now that I realize how short my life could be, I find myself looking at things in a totally different way.
While I was on my trip I cleared my mind of all thoughts of death. I didn’t allow myself to think of what if’s or could be’s. For the first time since my diagnosis I found myself planning for the future instead of focusing on the here and now.
Sometimes you need to get away to reset and find your spiritual center. I found mine as I played with my human and floofer (doggie) nieces. I found mine as I felt the sand beneath my feet. I found myself as I felt the warm sun on my face.
I refuse to let myself slip back into that terrible darkness. The only thing I can do right now is move forward one step at a time. I can’t control what cancer does to me. All I can do is stay strong, be positive, and not let anything or anyone hold me back.
I’m living with cancer. Not dying from it.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)