I’m sitting in a small waiting room at the local hospital infusion center with a dozen other people on a Friday afternoon. Behind me I feel a bit of commotion and a cluster of people. A quick glance tells me a couple of nurses have started clapping and then everyone in the room, now at least 15-18 are clapping and singing Na na na na, na na na na, hey hey, goodbye.
It’s a celebration, a party I’ve inadvertently attended by simply showing up for a Zometa infusion. Clearly everyone is invited to share the festivities and celebrate another patient’s “last” chemo infusion. Having “finished chemo” in 2012, I do understand that it feels like a milestone.
I experienced eight rounds of chemo, AC-T, a common treatment for the garden variety hormone receptor positive breast cancer that showed up in 2011. Two surgeries proceeded chemo and five weeks of radiation followed, it was a grueling year.
It is a wonderful thing to be done with that part of treatment. However it is hardly the end for many people.
Seven years later, I get this quarterly infusion for bone strength, along with a daily oral Ibrance and a Femara an anti-estrogen treatment. You see, in 2018 it was discovered that the cancer had returned, I am part of the 30% of patients who have a recurrence. The original cancer, which was cut, poisoned, and burned went undercover, all that treatment wasn’t a success. Breast cancer doesn’t come back in breasts years later, for me it showed up in my bones causing damage, weakness, and severe pain. There is also a risk of metastasis to other organs like liver or brain.
I’m lucky, my body is responding to treatment incredibly well. There are new options, such as the Ibrance, that are turning this death sentence of a disease into a long term chronic illness. My doctor is amazing and I feel like I am getting the best possible care.
I digressed though, It felt important to share a bit of background before continuing the story.
Sitting there, listening to the singing, I got kinda mad and disgusted at first. I had heard about “ringing the bell” when a patient finishes their last chemo here, it didn’t happen at the other infusion center I used in 2011. I’m sure some form of this ritual is celebrated elsewhere as well. It is new to me and while I did have an opinion, I wasn’t prepared for how viscerally painful I would find the experience.
Because, as I’ve said, statistically 30% of people will have a recurrence, and when it comes back and spreads, it’s metastatic, the only kind of breast cancer that will actually kill you. That 1.8cm tumor in my left breast wasn’t killing me. The “diffuse and wide spread” cancer in my bones was going for it years later. Short of a miracle, there will be NO END OF TREATMENT for me. No final chemo, no singing of songs or ringing of bells. This situation is similar to that experienced by those with other cancers as well.
The amount of money, energy, angst, and fear expended over cancer is epic. We all want to die of natural causes peacefully in our beds at 92, after having a chance to knowingly connect one last time with our loved ones, of course. Cancer interrupts that fantasy.
We do so much around cancer so backwards. We fear it and hide from it. We spend a vast amount of money on awareness, leaving crumbs to spend on research that could save lives from metastatic disease. We blame people for being sick because they didn’t lead a perfect life and pretend that if we just eat healthy we will be immune from all bad things. We devote so many lines of text online and in print on how to make “the healthiest choices” and “avoid cancer” yet we can actually only influence about 35-40% of our health through behaviors, the rest is determined by genetics, environment, past history especially traumas, geography, and socioeconomics. I would also add that our soul’s journey for this lifetime is the biggest contributor, however science cannot quantify that, so for today, the first list will do.
The bottom line is that we, as a culture, are terrified of death. Full disclosure, I don’t want to die myself, I feel like I have a lot more to do here and there’s a lot of life left in me, I’m loving and appreciating life with a clarity that those with a life threatening illness discover.
So this bell ringing is another part of the fantasy of cheating death. Chemo is done! I’ve endured this horrible thing! I’ve suffered for my long term health, all will be well!
Guess what, I’m never going to finish treatment/chemo. For breast cancer 30% of those effected will experience metastasis and will return to some sort of active treatment. They may well need to come to the infusion center as I do. The Ibrance I am taking was fast tracked because it was a completely new and cutting edge treatment. It’s turning the mortality stats on their heads, I could be here for quite a long time thank you kindly. And during that time, I will probably continue to need the infusion center. There is also a chance that at some point chemotherapy and radiation could become treatment choices for me as well. Bell ringing isn’t part of my future.
Yes, I can hear those nice lady voices, the ones that say… “Oh, don’t worry about me, you go on and celebrate!” My voice is stronger, my voice, heart, and ethics require me to say something different. Stop dismissing the needs and feelings of your stage 4 patients. Stop pretending all is well in chemo-land. People die, it sucks, it is real. This celebration takes from too many to make it ok.
I have sat with my experience of the bell ringing for a few days. I am a self-aware human who does her own work and took my time to consider what was being triggered in me. I am comfortable saying it is at best an inconsiderate policy. At worst, it is hurtful, uncaring, and by ignoring the needs and feelings of people who will never complete treatment it severely marginalizes many cancer patients.
Why do they do this? I have no idea, it seemed like a good thing? There were probably some extroverted patients finishing chemo who wanted to celebrate. Others were present and wanted the same after they finished, and now it is a slowly moving freight train that just tosses people aside. I don’t want to piss in their cheerios or anything, and seriously, this is where leadership is required.
Leadership is hard. Leadership requires uncomfortable conversations and real communication. It requires educating and encouraging others to think beyond themselves. It requires one to model behavior and live with deeply held values and ethics. Leadership requires that all the patient’s needs, feelings, and prognosis be considered.
I’m going to be in treatment for a long time, I get constant reminders from the do-good and raise awareness pink ribbon folks about the risks of breast cancer. I feel the constant undercurrent of fear, it’s a hum, a buzz, it runs under everything in this culture, it is really loud at the infusion center.
Na na na na, na na na na, hey hey, goodbye, won’t stop death, it does hurt and ignore those of us who will never be on their last treatment.
And I’m someone who is doing great. I’m someone who can separate my stuff from others.
Before my infusion is finished, I can hear the bell start ringing again. Shall I stick my fingers in my ears, hum along to the La la la la, la la la la, la la, la la… or perhaps I shall recite For Whom the Bell Tolls?