I will start by saying it was just a bump in this journey of breast cancer. I’m ok, no worries my friends!
I get why those who have experienced breast cancer (or any cancer for that matter) often call it a journey. It is. I can only speak as one who has had breast cancer, and even now, almost 7 years out from diagnosis, it is still a daily part of my life.
The fear of cancer is not a daily part, although it does creep up and sometimes roars when lumps or bumps are found. Even when they are not found, there is a healthy fear that drives this cancer journey and helps one stay alert.
It would be so great to think about cancer as just a bump in the road, a “blip on the screen,” just a year or two of my life story, but that is not how breast cancer works. How I wish for myself and those I love on the same road to be able to put the past behind and never have to think about it again.
But that would be ignorant. Not wise. Life-threatening.
We must be aware of the reality the dreaded word.
It happens. As much as I would like to deny it, I cannot. If you are in the world of breast cancer for very long, you will know more and more people who are in the same world. Many of them have experienced recurrence 1 year, 5 years, 7 years, 12 years even 25 years later. I can put a face with each of those years. I know their stories. I’m sure you can too. Olivia Newton John’s face is on People magazine this month with her story of recurrence 25 years after her first diagnosis. My heart broke for her.
When breast cancer comes back, unless it is a local recurrence, it often is stronger and more aggressive than the original diagnosis.
Cancer can stay quiet for years, then rogue cells come alive, float through the blood stream and lymph channels into lymph nodes, landing at times in organs. This is called metastatic breast cancer –breast cancer that has spread beyond the breast to other organs in the body (most often the bones, lungs, liver or brain).
When this happens, you get an automatic stage 4. Breast cancer does not mess around when it recurs. If it implants in organs, it is an unimaginable diagnosis and you are told the statistics and hearts fall, faint and almost fail with the news of it.
I pause when writing that. I am in a busy coffee shop and I’m swallowing hard and trying not to let tears overflow. I think of the women, the brave, brave women who have heard the words of a stage 4 diagnosis. I have seen such courage in these women and I want their stories to be known, heard and understood. I think of how their journey becomes a fight for the rest of their lives for their life. A lifestyle of fighting, not for the faint of heart.
I hesitate as I write, I do not want to instill fear or cause worry, but I want the whole story to be known. I want to tell of the brave and speak about the reality that life is not all pink roses or ribbons, especially as a late stage survivor. I can’t tell you how many times I’ve heard someone with stage 4 say they wish their story was more understood.
I do not fully understand but I have been given glimpses.
I was diagnosed with stage 3b breast cancer 7 years ago. I was told it was only 1mm from my chest wall, and that fact + the size of my tumor + my young age of 34 + the advanced stage of my cancer gives me a much higher chance of recurrence. We have known this and I am still learning how to live fully in the space between too much fear and ignorance. I’ve been so blessed with years to learn this lesson.
I do not want to live in fear, I refuse. But I also don’t want to live with my head stuck in the sand and ignore any signs my body gives me of recurrence, for catching things early can be the difference between life and death. I try to stay in the balanced middle. It is not easy, this balance that involves life and death.
We as survivors are instructed to regularly check for lumps and bumps. We are told if aches and pains are new and do not go away in a couple of weeks, we must get checked.
A reoccurring headache? Most people are simply annoyed by it. Breast cancer survivors wonder if it is cancer in their brain, as it is a common place for rogue cells to travel and settle.
A backache? Joint pain? Most people chalk it up to age. Breast cancer survivors count the days and hope it goes away, hoping it is not cancer in the bones, another very common place for cancer to travel. The drugs some of us take to keep cancer at bay also cause joint pain, so there is that.
It is not a fun way to live, but usually, we are too busy living and being thankful for life to pout about it.
I’ve had several scares. A lump found by my physical therapist 6 years ago put me in the hands of a surgeon and his exploring revealed just scar tissue/collagen surrounding my implant. A bump on my collarbone 4 years ago gave my Oncologist concern, but an X-ray revealed nothing. I’ve had a couple of scans over the years exploring lymph nodes under my arm. They look normal but we keep our eye on them. A spot on my kidney that turned out ok…the list goes on.
2 years ago my Oncologist found a lump on the left side of my neck. That one scared me. I knew if it was positive, I would be staged at an automatic stage 4 and the fight would become lifelong. Most Oncologists agree that lymph nodes above the collarbone put you in this category. After a brain and neck MRI, I was given the all clear. I cannot tell you the relief.
Notice in all of the examples above I get to use the word “years.” What a gift. I’ve been so thankful for the years.
3 weeks ago, I found a node in the other side of my neck. I was scared. I willed it to go away. I didn’t want to push pause and face it in the middle of this amazing summer I’m having.
I stood in front of the mirror at night while brushing my teeth and noticed a slight swelling above my collarbone. It caught my eye because it was different than the other side. It caused me to pause and explore with my fingers, the way Dr. M had shown me, the way she does when I go see her every 3 months. She follows a path and I tried to mimic it. My fingers paused right above the swelling on the side of my neck on a distinct lymph node. It felt firm to me, and it scared me. Survivors want their lymph nodes to stay small, soft, movable and squishy.
I told my Todd and could not keep tears from streaming. Oh, how I hate worrying my Love! He knows. He knows how quickly this journey can take a sharp turn and slow living becomes fighting for your life. He hugged me and told me to make an appointment right away.
I did and they got me in the next day. They felt what I felt and scheduled an ultrasound. I waited—the hard part. Waiting for the ultrasound and then the waiting for results, both took about a week.
I was told by my sweet fighter friend who knows what it is to feel neck lumps and has learned to wait so well, to “practice staying present in each moment and take each day as it comes.” Such wise advice. I took it. I slowed down. I noticed that I paused when I looked into my loved one’s eyes that week. I drank in the moments and felt consumed by love, which kept me from being consumed by fear. An answer to prayer.
I didn’t tell our parents this time. I don’t know why as they are usually the first people we call for love, support, and prayers. I don’t know how to explain it exactly, except to say I didn’t want to worry my loved ones. They all would say I’m worth the worry and would always want to know, but I just couldn’t bear to do it this time, not until we knew from the pictures that there is something to worry about.
The results — it is a lymph node that is making itself known for some reason, but it looks normal on the ultrasound. I asked if it is normal to be able to feel lymph nodes and was told: “no, not usually.” She asked if I had any tooth infections or cold viruses lately. I have not.
I told her how relieved I felt and that I would stop feeling around and breath easy. She then said, “No, that is not what I want you to do. You need to keep feeling it. Be vigilant. Get to know the size, shape, and feel and if there is any change, call us.” She also told me to come see her a bit earlier than my usual 3 months.
I will be seeing my Oncologist the end of August and will be grateful to have her skilled hands on my neck, exploring, capable and knowing. I have always trusted her instinct and her hands. God used those hands 7 years ago to save my life.
In the meantime, I am going to keep trusting and leaning into love. God is love and my time with him is so sweet, especially in the moments when I think of the “what-if’s.” I know He knows my journey and His love will never leave me alone no matter where it leads.
I’m also going to keep pushing pause when looking into the eyes of my loved ones, to soak more of them in, and learn how to love them better. Man, I can lose grasp of this concept so quickly! I found myself impatient and annoyed with one of my three lovelies today. How quickly I can lose perspective.
I had to remind myself of the love lessons I have learned when in fear, remembering that they are so dear! It takes practice— practicing presence.
Yes, life is a journey, one with twists and turns and sometimes devastating roadblocks, yet we are never alone on the path. I will continue to take my sweet friends’ advice and practice presence every day, soaking in and seeing the best in my loved ones.
And when the fear comes and the future is uncertain? I will remember that I am never alone, God and his love will never leave or forsake, for He is and always will be present.