The Struggle Is Real
Living with metastatic breast cancer, we talk a lot about treatment options, scans, and prognosis. Some of these things are finite, treatments either work or they don’t, we have our scans every three to six months, and are expected to live our lives in between. But what does that really mean? What does living with metastatic breast cancer really feel like?
Some of us, myself included, are still working full time.
Some of us, no longer work, but fill the time with family and friends.
All of us suffer. What we may not talk about as much is the effects these treatments, scans, and disease have on our quality of life. Sure, some of the more common side effects are openly discussed such as fatigue, hair loss, and nausea. Those are the things we all expect when we hear the word ‘cancer’.
What does it truly feel like to live life as an advanced breast cancer patient?
As I mentioned, I am still lucky enough to go to work every day. I have always loved my job and taken pride in my career. At first, I continued working to retain a sense of normalcy in my life. I am fortunate to work for very understanding and accommodating people who have done their best to support me and any needs I may have to allow me to continue working. Not everyone has this luxury and I recognize that. Another reason I prefer to work, I want to instill in my son a strong work ethic. I want him to see me getting up and working hard every day to support the life we have. This was something that was instilled in me at a young age and I can’t thank my parents enough for that. Lastly, I work because I have hope. I hope that I’ll be here a long time. I like having money to travel and do fun things; while living on a disability stipend is not a terrible option, it does set certain limits that I want to postpone as long as possible.
I am struggling, I admit it. For the last few months, I have been having serious mobility issues. Initially, I thought I had broken my leg. The pain seemed to radiate in my mid-femur of my left leg and it was difficult to put any weight on it. For a few weeks, I sort of walk-hop-shuffled in a horribly embarrassing, silly walk style that would make Monty Python proud. It wasn’t a constant pain though, it came and went, so when I first mentioned it to my oncologist, he didn’t seem overly concerned. I’d just had a PET scan that showed a reduction of cancer activity so it likely wasn’t a new lesion.
Two months ago, I almost fell after hitting a crack in the sidewalk. It felt like the top part of my thigh went one way while the other ran in the opposite direction. I was sure I had broken it. The pain was unreal. By this time, I had started carrying a cane in my purse who I affectionately have named Ethel (my other cane, Lucy, stays by my bed). With that assistance, I was able to get up and make it home. The next day, I went into Urgent Care and was told that my X-ray showed no fractures, but they could see the damage caused by the bone mets. So, no broken bones, but an increasingly painful leg from a mystery issue.
MRI to confirm source of bone pain
At my most recent oncology appointment, I told my doctor I was "over it". We needed to find out what was going on with my leg because I now have days where I cannot walk. The pain in my leg radiates from my hip (where my bone mets are most active) down to my toes. I have fallen, pretty badly, and had to have my 8-year-old son help pick me up off the floor. Maybe it’s a nerve thing, maybe a muscle. Maybe I just need a new robot-hip so that I can finally be the Wonder Woman I always knew I could be. Either way, we need to find some way to manage it before I cut it off, attach a wooden peg to it, and take to the high seas. My doctor sent me for an MRI from which I am currently waiting for results.
Quality of life
After three months, I have basically only been leaving my house to go to work. Walking has become such a challenge, it overwhelms me. At home, I have been using a walker…only at home as I refuse to use it outside the house. At forty-one years old, cancer has reduced me to an elderly invalid, (albeit sassy) well put together (on most days) invalid. My quality of life is starting to feel seriously impaired in a very depressing way. When I start down this road of thought, I think about how many other people with advanced breast cancer feel the same way, but don’t speak about it.
Living with metastatic breast cancer
How many of us are at home, on the couch, mindlessly clicking through Netflix looking for something new to binge as you know you’ll be stuck there all day? Since every new pain could signify something horrible, how many of us grit our teeth and keep moving because we are afraid to ask what this really means? We all know that this road only leads to declining health, but we all need to fight to have the best possible quality of life while we can. Personally, I am one of the people that gets the weirdest side effects from medication. If no one has heard of it, I’ll get it (scalp sores anyone?). Sharing these things and giving the world a clear, accurate, picture of what we are living with on a daily basis not only helps each other, but it also helps our doctors so they have this knowledge should it come up with another patient.
The physical and emotional toll of advanced breast cancer
Sadly, living with metastatic breast cancer is a life of pain. Physical, emotional, mental pain. Just because I put a smile on my face, doesn’t mean I’m not also gritting my teeth. Just because I choose to recognize the joys, does not mean that I don’t feel the agony. We all do, all the time. I recognize that I am very fortunate. I am complaining about my dumb leg when others deal with much worse on a daily basis. We need to be kind to each other, take care of each other, and recognize that we may not be seeing the reality that someone is living with.
Unless you’re me because I’ll show off my peg-leg.
Editor’s Note: We are extremely saddened to share that on Saturday, September 12th, 2020, April Doyle passed away. We know that April’s advocacy efforts continue to reach many. She will be deeply missed.
Caregivers: Do you practice self-care?