Hello darkness my old friend

Anxiety

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.

rebecca goddard quote

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.Gilder Radner quote

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.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
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)
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Dying for a cure

mbc ribbon colors

Every October it’s a world of pink. I guess I was just as guilty of it myself. I used to have so much pink stuff. Pink shirts, pink scrub tops or pink ribbons on others, pink golf balls, and so on and on and on.

It’s funny. I think back to nursing school and everything we learned about was the encouraging statistics. We learned about the importance of early diagnosis and how if detected in it’s beginning stages breast cancer was easily treatable. It had good rates of remission. There was a cure. A cure.

I can’t remember ever learning about metastatic breast cancer. Even as a women’s health nurse with a primary focus on diseases specifically targeting women including breast and uterine cancers, I never really heard much about stage IV breast cancer. The only thing I knew was stage IV means terminal. It’s over. A death sentence.

I can’t begin to describe the terror I felt when I realized that I had stage IV cancer. To this day, my oncologist has never specifically said those words. At my first appointment I asked him what my prognosis was. He told me he had patients over the years that lived for years with cancer similar to mine. But he never said the words metastatic breast cancer. I figured it out on my own by digging into my medical records and pouring through web searches. And often those searches aren’t exactly the thing you should be doing when facing a disease like this. Often the things you read on the internet can scare you more than anything else.dying for a cure animals

Now that I have joined the group of people (don’t forget the men) fighting against metastatic breast cancer, I have begun to feel a huge resentment towards the pink ribbon campaign. Maybe it’s me being petty, but I can’t help it.

In the US, someone dies from metastatic breast cancer about every fourteen minutes, a statistic that hasn’t changed much in the last forty years. I will lose women and men in the various groups I am in all the time. In the brief time I have been a part of them I have already seen at least five women that have lost their battle against a relentless disease. Even though MBC is a brutal disease that strikes so many, only about 2-5% of breast cancer research funding is devoted specifically to treatment and cure. We are the forgotten ones.

I now feel the same anger that so many other forms of cancer feel. Can anyone tell me the awareness color for uterine cancer? So many cancers, so many colors of the rainbow.

For starters, don’t forget the men. Male breast cancer – light baby pink and baby blue
All cancers – light purple or lavender
Uterine cancer – peach
Ovarian cancer – teal
Leukemia – orange
Lymphoma – lime green
Melanoma – black
Lung cancer – white
Prostate cancer – light blue

There is a kaleidoscope of colors to represent each type of cancer, a Crayola box full of hues, but the only color most people can remember is pink. Think pink. There are over thirty established ribbon colors to represent many different forms of cancer, but in the end it all comes down to pink.

I feel a sense of fear and anger. Honestly at this point metastatic breast cancer doesn’t need awareness as much as it needs research dollars or in a perfect world…a cure. The average survival following diagnosis? Two and a half years. Five year survival rate? Twenty two percent from most of the research I have read. But it receives only 2-5% of research funding. Why?

Right now what those of us battling metastatic breast cancer need most is additional funding to develop medications, treatments and therapies. Very rarely does someone die from cancer that remains in the breast but once it travels to a distant site our chance for long-term survival becomes much lower.

We need a cure

For those with metastatic breast cancer it’s a chronic disease that will never go into remission. The hope is to remain stable for as long as possible. My only hope is to remain stable as long as I can. My sisters (and brothers) are dying for a cure. When you donate your money, don’t forget about the forgotten. Don’t forget about us. We are more than pink.

Note: For more information about metastatic breast cancer awareness, research and support visit METAvivor.

Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
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)

Cancer sucks

Cancer sucks

It doesn’t matter what the type, all cancer sucks. I am so damn tired of watching people I love, care about and respect fight this terrible demon. I have lost too many people because their bodies finally can’t fight anymore.

Today I learned that one of my first mentors from the first hospital I worked at as a baby nurse is transitioning to comfort care after an amazing and courageous fight. He had beaten that terrible demon in the past and beat it like the warrior he is.

But cancer doesn’t care. It is evil and likes to play terrible jokes on people. His cancer returned and he had a bone marrow transplant as he continued to battle on but his body rejected the transplant. Even fighting cancer, his sense of humor continued as he joked about his chemo being his lunch and his blood a late dinner or better living through chemistry. That’s just who he is. A fighter with a mischievous smile.

It doesn’t matter what the cancer, I have lost people just the same. Lung cancer which stole one of the funniest women I have ever met and my father who I loved dearly. Or esophageal cancer that took a father, a grandfather, and someone I look up to as a fellow fighter. Dad, Julie and Rob, I think of you often. Soon Gary will join them in the cancer fighters club in the sky.

And right now, I look around me and see so many others battling alongside me. My good friend Marquita who was diagnosed almost the same time as me and is my cancer sister right now as she fights to kick uterine cancer’s a**. The family member of one of my friends that is currently battling a tumor in her brain. Those in the groups I follow who are in different stages of fighting breast cancer. And to the brave survivors who have fought the fight and won. I have so many friends who in the days since my diagnosis have contacted me to offer me words of comfort and encouragement. They have given me words of hope at a time that often seems hopeless.

Cancer didn’t beat my friend. He battled it with everything he had, but in the end he is making the choice to end the fight on his own terms. To die with the same dignity that he lived his life with. He taught me to be fierce. To be a warrior. And to fight cancer with everything you have. As I fight my own fight, I can only hope that I can live up to the example he set and make him proud.

Note: Gary passed away around 7:45pm tonight. Fly with the angels. You will live on in the legacy you have left, you will live on in the patients you have cared for, you will live on in those you have shared your knowledge, humor, and kindness with.

Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
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)