Know Stage IV: Celebrating Birthdays and ‘Rebirthdays’
For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV.
For Know Stage IV, Kirby Lewis writes about the multiple “birthdays” he celebrates, including the anniversaries of milestones in his breast cancer treatment.
In 1960 my mother gave birth to her first child on a Sunday morning, a baby boy. I came into the world on September 18, without complications, with all my proper toes and fingers, and light blonde hair. I was the first boy in two generations on my mother's side, so I was destined to be spoiled and doted on by my mother's sisters, her parents, and a host of great aunts and uncles. Birthdays were an accepted part of growing up, and I, like most young children, looked forward to celebrating this annual event. Little did I know that as the years would pass I would have an opportunity to celebrate more than one of these events each year.
In the spring of 2012, I discovered a lump in my left breast. I knew immediately it was cancer. I was not wrong, and although I was not totally "freaked out" as one might expect from this news, I accepted it as part of life. What I didn't expect with this prognosis was that I would also require open heart surgery. So in a matter of just a few short months I had a full mastectomy, in May, followed by an open heart surgery on September 5. Bingo! And after surviving both of these with minimal amounts of complications, I felt as though I had a new lease on life. So much so that September 5 marked a point in my life that gave me a feeling like I had been reborn – like I had a life to look forward to, new things to achieve, from a different perspective than I had ever had in the past. A life blessed. A new birth! So now I started to celebrate two birthdays.
But I now celebrate three. In the spring of 2016, just 4 years after I had discovered that I had stage II breast cancer, I learned that it had become metastatic. Now, this cancerous disease had spread violently into both lungs and my bones, with a lesion on my spine. This is a much more overwhelming situation than anything else I had experienced. I had frequently confided in my wife that I suspected the cancer would return. I'm not sure if I was being realistic or worried, but I lived with the reality of that thought. When the doctor showed me the scans I wasn't entirely surprised. But I was shocked at the extent to which the cancer had spread in my lungs.
I tell people if you can envision the shape of an ordinary leafy tree as the shape of my lungs, with the leaves being the cancer nodules, that was how the scan appeared to me. There were literally so many nodules I couldn't count (and I tried), but they couldn't be counted, and I knew it was not good.
The hardest thing for me to digest that day was what happened as we left the doctor’s office. Quietly we left, and as we walked away we absorbed the reality of this catastrophic image. The reality of what we had just seen was simply too much for my wife, and she collapsed. It was the first time in almost 30 years I had ever seen her so fragile, so delicate, so consumed. Her emotions overflowed and together we wept. I knew that if we were to somehow get through this, she would need my strength as much as I would need hers.
As the days turn into weeks, and weeks into months, my routine became one of chemotherapy injections, infusions, weekly visits to the oncology department, regular physical exams by my oncologist, mouth sores, incomprehensible exhaustion, loss of appetite, weight loss, depression, and mental anguish. All the time I tried to put on a brave front, for me, for my wife, for my son and for my family. And I prayed ... a lot. I spoke to God often, and I knew He heard me. I have always had a strong spirituality. I was reared in the church, and I felt as though I knew God and He knew me. Still, I questioned, "Why?" And almost immediately upon asking this, I knew the answer. This was not of God's hand. It is just part of life. It is part of living. And while certainly no one would choose this disease, it is still part of our lives. It is still part of my life.
Years ago I used to teach an art class. In that class I would often tell my students to "embrace, don't erase" – simply meaning that there are no mistakes in your art, and more importantly, as an artist it is valuable to learn how to incorporate, or embrace, those flaws, those "mistakes." And now I realize, as I write this, the same applies here. We must learn to live with what we are given in life. We must learn to embrace our lives. They may not always be the lives we would choose, but nonetheless it is the lives we live. And that is key. Learn to love living life. Sometimes it can be hard with cancer. I can't argue that. But it is ours. After all, we cannot erase this, so we must learn to embrace it. Not in a loving way, but in a productive way. Much the way an artist strives to complete a work of art.
And so as the chemo continues, the treatments are part of my routine, and so is my desire for spreading awareness about breast cancer, especially male breast cancer. I realize it is an important role that I MUST embrace.
Throughout the fall of 2016, the treatments continued and my oncologist tried to get me into a clinical trial at the National Institutes of Health (NIH). On November 4, it happened. My oncologist called me to give me an update.
She said, "I have good news and I have news."
I said, "You mean good news and bad news?"
And her reply was, "No ... no bad news."
She continued to explain. I had had a scan earlier in the morning so I was assuming she was going to relay the results to me. Instead, she informed me that I was eligible for clinical trials, but added that she feared I would not be able to participate. I asked her why not and she told me because they need to do a biopsy.
“OK,” I said. “A biopsy is fine. I've been poked and stuck enough, I don't mind.”
She said, “Well, it is difficult when there is nothing to biopsy.”
Quietly I contemplated what she was saying, and I asked her to explain, as I didn't understand what she meant. She explained to me that there was nothing for them to biopsy: My most recent scan didn't even show scar tissue, the cancer for all intents and purposes had left.
Once again I have been reborn. Once again I had another birthday to celebrate. “No evidence of disease,” or “NED,” would become part of my vocabulary, and I was thankful. I felt blessed, and I knew God had heard my prayers, and more importantly that they have been answered. Now I embrace my three birthdays, as all three are significant. I surely cannot erase them and I wouldn't want to. I love my life. It's not without imperfections, but I embrace it: It is what I am given.
Learn the facts. Support the cause. Know Stage IV.