Living with metastatic breast cancer feels like walking a tightrope, quarter to quarter, between scans. It’s a constant balancing act of living in the moment while bracing for the next set of results. Let my mind wander too much, and I risk falling. And sometimes, the higher the fall, the harder it is to climb back up.
So far, I’ve experienced two scenarios out of the many possibilities. The first is the best: my scans show no progression (though they never miss a chance to remind me I’m getting older! Ha!). In those moments, I can breathe again for the next three months. I can be fully present and walk that tightrope with relative ease.
The second scenario is the one I dread: the scans show progression, requiring further treatment. Thankfully, so far, there are still options. It means more scans, maybe a biopsy, but always a plan. The first steps back onto the tightrope are always wobbly, filled with worry and anxiety. But then, my incredible oncology team and I create our plan. The wobbles subside, and I find my footing again. I also lean heavily on my support network—my safety net—who help me stay balanced, keep living, and continue making memories.
For those who aren’t familiar with my basic scans, every three months, I get a CT scan from my cervical spine down to my pelvis. I lie on a table and slide through a giant donut-shaped machine. It spins around me, taking thousands of detailed pictures of all my organs from my neck to my pelvis. Yesterday, I met with my oncologist, and the news was… complicated. There appears to be progression in two lymph nodes in my pelvic region. However, these aren’t typical locations for breast cancer to spread. In fact, these locations are very rare for breast cancer progression. While there are reported cases, enlargement of these lymph nodes are usually associated with other cancers. Nevertheless, two lymph nodes appear to have progression to them, and they need investigation.
This brings me to the awful “wait and see” scenario. Because of the unusual location, these enlarged lymph nodes could be due to an infection. Unfortunately, they’re too deep to biopsy without surgery, which is too risky given my history of pulmonary embolism (PE) and deep vein thrombosis (DVT). Coming off my anticoagulants isn’t an option. Radiation without more information won’t be approved.
So, we wait. Waiting is truly the hardest part. But this wait is particularly difficult, because these scans aren’t reflective of breast cancer. My oncologist has ordered a PET scan, which also includes a low-dose CT scan. The PET scan will show if there’s unusual activity within the cells. The challenge is, lymph nodes always have some activity, especially if I’m fighting an infection. We’re hoping to see low activity and regular-sized nodes, which would suggest these lymph node enlargements just my body fighting something off on the day I had my scans. But there’s also the chance it’s metastatic progression.
And that leads us to the worst-case scenario: If the PET scan shows active cellular activity and the CT scan shows enlarged nodes increasing in size, we need to act. I asked about radiation, but it may not be an option given their location, and there’s no research suggesting it increases survival. Greeeaaatttt… There are no more hormone therapy options for me, which means I’d be facing chemotherapy for life.
I couldn’t hold back the tears, knowing that in two to three months, my life would be shattered further. The next line of chemo might give me a year or two—if I’m lucky—living with all the lovely side effects like hair loss, worsening neuropathy, nausea, and fatigue. I even dared to ask what came after that chemo. The answer? One more chemo, but not as effective. Having said that, my oncologist is amazing. She came back to my question about the possibility of irradiating the two nodes. While there is no research suggesting in increases survival, she could potentially be able to make a case that radiation may not increase my survival, but it would certainly be an improvement to the quality of life I’d be facing with chemotherapy for the remainder of my days.
Jon asked my oncologist a crucial question: “Is there a reasonable chance this could be caused by an infection and not cancer?” Her answer was “yes.” With that, we’re focusing on now, not the potential future.
These past few days, I felt like I had fallen on the tightrope, straddling it, doing everything I could not to fall completely off. Jon helped me back up, reminding me to focus on that “reasonable chance” and to see these next two to three months as a time for living, not just waiting.
So here I am. I’m standing back up on the tightrope now. Still shaky, still anxious, but Jon keeps reminding me about the possibility of a passing infection. He’s right. There’s nothing more I can do for the next few months except live my life. And with that thought, I’m finding my balance again.
If you’re reading this and feel moved to offer support, a gift of hope, no matter how small, can make a difference. Thank you for being part of my rollercoaster life, and being part of my safety net.
I can’t imagine what you go through every day Natalie. I know one thing, you are a force to be reckoned with. Never lose the power of hope, it goes with love and happiness. Thank God Jon is in your life to help raise your hopes up when things start to collaspe. That’s love. Thank God for your beautiful family that fulfills you. That’s happiness. Faith, Hope and Love, the three virtues, and the greatest is love.
Thanks Joyce – cancer is truly larger than just the illness. I am so thankful for everyone in my life. I truly don’t know how I would have done it without my community propping me up, most importantly Jon. ❤️
You are such an amazing individual and inspiration- your resilience and strength are beyond most. You are a reminder that we must live each day to the fullest. Thank you.
Thanks Mia – You are so right! Sometimes we get bogged down with all the “chores” that we forget to focus on enjoying ourselves.
Thanks for your message and for reaching out. Comments like yours make me smile!
My friend, I continue to admire the strength and faith you find behind every scenario. I realize life doesn’t promise us tomorrow and that today is truly the best we have. You continue to lead your life as that of a mother, partner, friend, educator, and ultimately a superhero.
Awww, thanks Anna, though in this case, the props go to Jon. Yesterday my scenarios felt very different.
I can only focus on what I can control. The rest is just noise for now.
You are a true warrior Natalie, and I’m glad that you have Jon’s support. You know I lost a spouse to BC, so I feel close to you. Now that I live with prostate cancer (wait and see mode), I am in your corner cheering you on. Keep up the fight…and to that end, check out my friend Lawrence Gowan’s song Keep Up the Fight on YouTube. Stay well! XX
It’s always great hearing from you Wolf! I do remember that you lost your wife to breast cancer, but this brain fog of mine seems to not be cooperating and I can’t remember if I knew about your prostate cancer.
I’m so sorry you are going through this a “second time”. Because being a cancer patient’s caregiver is living it with them.
I hope your wait isn’t too much longer and your “see” is unremarkable. I never imagined I’d be excited when part of me is now considered unremarkable!
Sending you cancer kicking vibes!
Come on Natalie!, you got this! Remember years ago we laughed so hard when we talked about “my gawd woman, you’re still around!!! – the insurance company has you in a frame with caption “beating the odds”. I’m not a prayer filled woman, but I’m keeping on saying those words to the universe. You got this bitch.
I sure needed that belly laugh! I totally forgot about that insurance discussion. Here’s hoping I continue to in our insurance’s “Beating the odds” frame for years to come!
Infection infection infection infection infection infection come on sing it with me infection infection that’s the direction infection infection no cancer detection. I Love You Natalie
Infection, infection, infection, infection, infection, infection! I’m singing it with you! Infection, infection, That’s the direction! Infectio, infection, no cancer detection.
I loved you right back, Jilly