Why Are My Breast Cancer Side Effects Never Ending?

The farther I get away from my breast cancer, the more I want to know why are my breast cancer side effects never-ending? It’s as if the disease itself was manageable, but the side effects keep coming. And no one wants to hear about it. Everyone wants your journey to be over.

Years ago, I remembered my mother telling us that once her conversations became about her doctor appointments, medications, etc., we should take a hatchet and put her out of her misery. She was joking but honestly did not want to bore everyone with her health updates as she aged. Many older people do speak about their doctor appointments as they are the highlight of their week!

As you might imagine, I do not want to be that person, although I could be right now. For starters, I am too young to be engaging in such conversations! Early in this post, I’d like to state that this is not a cry for help or sympathy.

I am sharing this part of my cancer journey because I believe it is relatable to anyone (not just cancer survivors) who have experienced trauma in their life. No matter the tragedy, we all share the same feelings about experiencing a life-changing situation that we never saw coming.

Breast Cancer Changed My Life Path

I did not dream of growing up and getting breast cancer when I was younger. I always thought I would have a successful sales career, retire to the North Fork of Long Island, and live a comfortable life playing with my grandchildren. Sounds pretty reasonable, right?

However, my life took a complete detour from the route I anticipated. My breast cancer arrived when I was 56 years old, precisely at the point in my sales career when I made more money than I ever had. I anticipated this would continue for 8-10 years (my peak earning years), and I would retire. Not.

My illness resulted in my being “right-sized,” and while (thankfully) I didn’t know it at the time, it made me unemployable. Therefore, it took away my identity and seriously impacted our finances. We were a two-income family that lost its right arm. No job, no income – no ability to afford our current community. We had to downsize, which I did kicking and screaming. It wasn’t pretty.

Side Effects Are Never Ending

I have told this story before, but I left out many details. Truthfully, I was embarrassed. Our world came crashing down around us because I got breast cancer. I put it all on myself, and it was overwhelming.

Intellectually, I knew I did nothing to “catch” cancer. Emotionally, I couldn’t separate myself from the guilt of negatively impacting my family. Admittedly, we were all spoiled. We took great family vacations to resort properties in the Bahamas and Jamaica. We lived incredible lives.

Once the shock of me having cancer wore off and my treatments started, we all thought I would complete my treatments and our lives would return to normal. If only that were true. Nothing is normal after breast cancer or whatever malady changes your life. You need to create your new normal. No one ever told me that.

It took me a very long time to accept this. I was so weak from the surgeries, chemo, radiation, Sepsis, and kidney stones I could barely walk. I had to figure out my new normal emotionally and physically. Who was I if I wasn’t the person I had been before breast cancer? It was frightening! I was so lost.

Unfortunately, I fell into a deep depression. It was surreal. I knew I was sad and not myself, yet I didn’t care. I just wanted to sit on our couch all day and rest. Thank goodness my husband made sure I saw a psychiatrist! It took a long time, but I eventually snapped out of it. I do not ever want to experience that again.

Trying to Reinvent Myself

Once I put the depression behind me, I had the overwhelming task of reinventing myself. I was also experiencing the following side effects:

• Inability to sleep – afraid to close my eyes due to nightmares
• Nightmares – mainly of my 5-day hospital stay when I had Sepsis. I had two surgical procedures without anesthesia and was given last rites during this time.
• Complete numbness in my right arm
• Pain in my surgical sites
• No hair
• Nausea
• General fogginess, lack of concentration.
• Overall Weakness (unable to open a water bottle)
• Severe fatigue

These symptoms were during my first two years post-cancer. I still have trouble sleeping due to nightmares and fatigue issues. My strength is still laughable. I have been diagnosed with neuropathy in both feet. My stomach does not empty properly, which is called gastroparesis. This may or may not be due to chemotherapy.

Three weeks ago, I woke up to completely swollen legs and toes that looked like sausages. I gained over ten pounds! My doctor prescribed a water pill to eliminate the swelling. It worked a little bit but not how it was supposed to. The doctor doubled my prescription yesterday, so fingers crossed this works. He is sending me for a stress test and echocardiogram because he suspects I have a heart issue. It may be related to my radiation treatments.

Every day seems to bring new health challenges for me. I refuse to feel sorry for myself. Many people are worse off than me, and I am genuinely grateful to be alive! I am resigned to the fact that chemo and radiation have side effects. It is what it is. When people ask me how I am doing, I either answer, “today is a good day,” or “today is a challenging day.”

Breast cancer (for me) is not temporary; it is something I am living with for the rest of my life. And, that’s okay – it’s okay not to be okay. There was a 31-year-old woman who competed on America’s Got Talent (AGT) last year. Her stage name was Nightbirde. She was battling breast cancer when she competed on AGT; she had a 2% chance of survival. “At least it is not zero percent” was how she looked at her cancer. Her original song was titled, “It’s Okay.” I think of her often.

Simon Cowell gave her the golden buzzer. She had the voice of an angel! Tragically, she died before she could go “straight to Hollywood” to compete. She said, “It’s important that everyone knows I am so much more than the bad things that happen to me.” Nightbirde is my new inspiration. It’s unbelievable how she continued to spread positivity despite how sick she was. You can hear her performance here: https://www.youtube.com/watch?v=CZJvBfoHDk0. Enjoy!

Do you know someone fighting breast cancer (or any other demon)? Their battle might not be over just because their hair grew back. Go easy on them and still check on them even though it may seem the worst has passed. Everyone can use a little kindness on challenging days.

Please comment below if I have said anything that resonates with you today. I hope we all have a string of good days in front of us. Remember, “It’s okay to not be okay.”