On July 5, 2020, I learned that I had stage 4 breast cancer. And thus began an adventure I never asked for and certainly didn’t want. And an adventure that I never expected I would eventually refer to as “a blessing.”
Stage Four Breast Cancer – An Exploration I Never Wanted
I was never supposed to get breast cancer. At least, I never believed that I would. For one thing, we have zero history of breast cancer in my family, and extraordinarily little other cancer, too. (My grandpa died of stomach cancer, but he probably gave that to himself with a daily concoction of drinking beer and swallowing the juice from chewing tobacco for many years. And one of my cousins apparently had cancer in her face, but I don’t know much about that since she hadn’t spoken to me since I was 18.) Plus, I nursed both of my babies – my second for over two years. I’ve read, many times, that one of the MANY benefits of breastfeeding is protection from breast cancer.
But here it was. In my left breast. “Invasive Ductal Carcinoma”, they called it. I just called it my “boob bump.”
I’d first noticed my boob bump a few years before. Small and round, I thought it was a cyst. Then two more of them popped up and that simply confirmed my belief that I had Fibrocystic Breast Disease, which is much more common than breast cancer.
I never went in for a mammogram. I thought about it, but I had no insurance. And since I’m not much of a “doctor person”, I didn’t have any interest in going through the pile of bureaucratic bullshit I would have to contend with to get on Medicaid. I wasn’t sure I’d qualify anyway, since we live in a state that really doesn’t give much of a shit about anyone below a certain income level.
Then Three Little Cysts Became One
But after a couple of years, my three little “cysts” seemed to coalesce together into one larger lump. And at that point, I got a bit nervous. But still, “there’s no way that this is breast cancer” resounded in my head. And day after day, I just kind of went on with life. And my breast bump slowly grew.
There are other reasons I didn’t pursue the issue for so long. Many reasons. It gets complicated. And I will probably write about all that in a future blog post at some point. For now, I will simply say that by the time I came to be reasonably certain that I did indeed have breast cancer, I was also pretty okay with the idea of dying from it. With just letting it take me.
But Then the Pain Began
In the end, it was back and hip pain that drove me to get to the hospital.
I have been overweight my whole life. But in the last 10 years or so, my excess weight has really gotten out of hand – to the point of being downright debilitating. Combine my morbid obesity with my bad knees and, well, you can imagine that I was pretty inactive.
But I was doing what I could to work on it. I started eating keto pretty seriously and I was making an effort to walk a certain amount of steps in the house each day, trying to build up my muscles so I could do more. So I could get to the point where I could get out into the world. I hadn’t even walked around in a store for over three years at that point. And I wanted things to change.
But it seemed like the more I walked, the more pain I was in. I went from walking with one crutch (to support my bad knee) to walking with two crutches because my hips hurt so badly. And it just kept getting worse, no matter how much I walked or how carefully I moved. I’d wake up crying in the night and have to get up for a while. But I was so precarious on my feet, I’d beg my hubby to get up with me because I was afraid to get up alone. And I fell down, more than once. And had to have EMTs help me get back to my feet. More than once.
It was bad. But I didn’t think it had anything to do with my boob bump.
The First Trip to the Hospital
Finally, I couldn’t take the pain anymore. I had to do something. So one night, I asked my hubby to call an ambulance and get me to the hospital. I requested Boone hospital, since I figured they HAD to see me, even without insurance. And they did. And even though I told them about my boob bump when I was there, they focused on my back and hip pain. They decided (based on my weight and age, no doubt) that I had degenerative disc disease in my back. They gave me some pain meds, told me to keep up with my weight loss, completely ignored my boob bump, and sent me back home. (In my opinion – based on this and one other experience a number of years ago – Boone Hospital kind of sucks.)
So, home I went, with my pain meds (that cost us a fortune when we filled the prescriptions.) But at this point, I was beginning to really wrap my brain around the idea that I needed to DEAL WITH THIS. And not just the pain in my back. I needed to deal with my boob bump.
Time to Go to the RIGHT Hospital
Our town is the home (one of the homes, I should say) of the University of Missouri. And the University hospital is HUGE. One of the areas of the overall system is the Ellis Fischel Cancer Center. I decided that I really, really wanted to go see them. So, once again, my hubby called me an ambulance, and this time, I asked them to take me to the University Hospital Emergency. I was finally ready to throw myself at their mercy.
And they confirmed what I had come to believe – I had breast cancer. Not a surprise. But “Stage 4” was a bit of a surprise. And the horrible pain in my back and hips? That was cancer-related, too. That was a real surprise. I knew I had a swollen lymph node in my left armpit, but I had no idea that the cancer had migrated to my hips, spine, and sacrum.
The biggest shock of all? It was also in my brain.
They called in a doctor to do a biopsy on my breast right there in the ED. I won’t identify her by name but I’ve referred to her as “Dr. Fancy” ever since that first meeting. She was very “put together” and looked more like she was ready to attend a dinner party than put in a shift at the hospital. She also scoffed at the idea of me staying in the hospital at that point, because it cost “over a thousand dollars a DAY!” and I had no insurance.
I swear – the way we treat lower-income people in this country is APPALLING.
In the end, though, with cancer in my hips, spine, sacrum, and brain, they DID admit me to the hospital. Regardless of the cost. I can’t tell you how thankful I was for that. And how relieved. (They also started the paperwork process to get me on Medicaid, and helped me get approved.)
A Blur of Emotions and Endless Hallways
I spent most of July 2020 in the hospital and there is MUCH to say about that – too much to say in this one blog post. For now, I was simply say that overall, my time in the hospital was a blur of emotions and endless hallways.
I had surgery to remove the tumor in my brain. I had five radiation treatments on the cancer in my spine, sacrum, and hips. I spent time in three different hospital wards. I met some absolutely lovely people. I met some absolutely horrid people. I missed my husband. I missed my family. I cried a lot. I talked to The Powers That Be a lot. I learned a lot.
And I began to heal – in profound and surprising ways.
Only the Start of a Longer Journey
After nearly a month in the hospital, they were ready to release me. But I wasn’t allowed to walk because of the cancer in my right hip and femur, and home was not a safe environment for me. So I was transferred to a nursing home in a tiny town over an hour away from home and I spent three months there. Finally, at the end of October 2020, I was able to come home.
As of this writing (April 2021), I am still unable to walk. But I am building my strength and my ability to stand is increasing. I was so very weak, even before spending four months in bed, and I am determined to get strong enough (and lose enough weight) so that when I DO start getting to my feet, I can do so with some confidence. It won’t do me a damned bit of good to get to my feet only to fall down and injure myself further. So for now, I am doing my best to be patient, mindful, and willing to work. I am doing my best to trust the healing process.
Living With Stage 4 Breast Cancer
The most important thing to say before I close this first of what I’m sure will be MANY posts about my healing journey – is that I am LIVING with Stage 4 Breast Cancer – not dying from it. I am very blessed in that my cancer is 95% reliant on Estrogen as its “food source”. Thankfully, at 57, I am post-menapausal. And I am now taking an aromatase inhibitor – a drug that essentially removes Estrogen from my body. (Not exactly, but that’s an okay explanation to keep things simple.) Essentially, it is starving my cancer. My boob bump has shrunk so much, I now refer to it as my “Wishing Pebble”, like the one Raggedy Ann and Andy have. I talk to “her”. I listen to “her”. And I love “her.” After all, she is a part of my body and I love my body. I do not “battle” my cancer. Rather, I am doing my best to listen and learn from it.
I have no idea how much time I have left on this earth. But that’s no different from anyone else. None of us know how much time we have, after all. I don’t believe that my cancer is here to kill me, though. I believe that it is here to teach me. It was a wake up call, and I am paying attention.
The One Thing I Am Certain Of
The one thing that I do know with certainty is that I am better off now than I was before. Whether I live another 30 years or another five – the time I have left will be better, and happier, than much of the time before my cancer diagnosis. I have a love for life now that I haven’t felt in a very long time. I appreciate everything – from the simple beauty of washing dishes or cooking a meal to the joy of spending time with the people I love. I see beauty everywhere I look, even though I live in a sea of unpacked boxes since moving into a house of our own (leaving behind a rental that was absolutely horrific, owned by a real slumlord). I am happy. I am hopeful. And I feel very, very, very blessed.
To quote one of my favorite movies – American Beauty – “I guess I could be pretty pissed off about what happened to me, but it’s hard to stay mad when there’s so much beauty in the world. Sometimes I feel like I’m seeing it all at once, and it’s too much; my heart fills up like a balloon that’s about to burst. And then I remember to relax, and stop trying to hold onto it. And then it flows through me like rain, and I can’t feel anything but gratitude—for every single moment of my stupid, little life.”
Thank you for being here with me on my journey!