Dandelions in the Lawn
After He Said Cancer | A Memoir
A vivid image began to take shape in my mind. It was an ostrich burying its head in the sand.
“But if the cancer was starting to come back, why wouldn’t you want to know?” I asked him in complete disbelief.
It was an awkward conversation to have over a video call with a friend in Sweden. I had just told him that my husband had his blood tested for fragments of his cancer DNA, which would check to see if there was any sign of the cancer coming back. This was the most accurate test for cancer recurrence available, but with the test would come the knowledge that he may not truly be in remission.
“I just wouldn’t,” he said shaking his head and staring off to the side. “I want to live my life as long as I can and when that’s it…it’s my time…then I’ll go.”
“You can’t just die on command,” I said, feeling annoyed. “That’s not how it works. Why wouldn’t you want to know that it was coming back so that you could make a plan with the cancer doctor to beat it back?”
He was a doctor and a scientist like me, so had both the clinical perspective on what cancer can look like and background to understand how these newer tests worked. If anyone in the world could understand my perspective, it was him. That’s what made our disconnect so frustrating.
In my mind, there was only one way forward. Beat the cancer into submission. Confirm it was gone eight ways from Sunday. Then survey him like a hawk for even a whisper of a recurrence. At the first sign of the cancer coming back, fight it tooth and nail with the latest that science had to offer.
This was the approach that his new cancer specialist was offering by having him take blood tests specially designed to detect DNA fragments from his own cancer. She said that in her experience, once the blood test becomes positive, a patient is usually diagnosed clinically with metastatic breast cancer within 6 months. It would take this long for the tiny cancer cells to grow into a spot that was big enough to see on imaging.
In one of her patients, the blood test turned slightly positive after being negative for nearly a year after completing chemotherapy. Immediately, she imaged the patient and found a suspicious spot in her bones where it looked like the cancer was coming back. Then, she used radiation directed on this spot to treat the cancer long before it would have grown big enough to see on a body scan.
I had dreamed of this kind of aggressive approach to fight my husband’s cancer. Now was the perfect time to start these blood tests, she said, because he had just finished two years of Verzenio, a daily chemotherapy medication that came in pill form. The Verzenio followed almost nine months of standard chemotherapy and radiation.
If he was ever going to have a negative blood test, now would be the time when he had just finished this aggressive course of treatment. But if the blood test came back positive, it would mean that despite all these treatments, the cancer was still growing and thriving somewhere in his body. And the cancer treatments would need to start again.
There wasn’t enough medical evidence right now to know whether this approach would prolong his life expectancy, but I didn’t care. As a scientist, I believed in the technology and as a doctor, I knew that treating something earlier in the disease was always better.
“Did he already take the test,” my friend asked.
I nodded. He had his blood drawn about two weeks ago. With the first test, the company would need to request a small piece of his original tumor from the hospital to design the blood test to specially detect his own cancer. This could take as long as 8 weeks.
My friend looked away from the video camera again and chuckled a little.
“You are braver than me,” he said.
What choice do I have, I thought. It was hard to trust the body scans, because even if the radiologist called the scan ‘normal’, there could still be millimeter size beginnings of a recurrence that couldn’t be detected. Cancer cells could be hanging out in his bone marrow, ready to divide and send their brothers and sisters into his bloodstream. From the blood, the cancer could take up residence in one of his organs, like the lungs, liver or the bones.
My friend didn’t have cancer himself, nor did his wife. This conversation was entirely theoretical. Try thinking about cancer every day of your life for two plus years, and then judge the treatments that someone chooses or doesn’t choose to pursue. I wish I had the luxury of considering ‘what it was like to face cancer’ for the first time.
To me, cancer was like a weed in the garden. After his year of chemotherapy and radiation and two years of Verzenio, he should be “cancer free “meaning there were no dandelions growing in the lawn. Then out of nowhere, small yellow flowers might pop up in the lush green lawn overnight, threatening the peace of any lawn enthusaist. The sooner the dandelions were pulled out by their roots, the longer one could keep the lawn weed-free.
“Why would you reject the tests that were starting to become available to find a cancer recurrence before it even showed up on the body scan?” I asked him.
“I don’t know,” he said. “It’s just that I would rather live my life as happily as I could not knowing when it might come back.”
It was an ostrich head-in-the-sand approach that baffled me.
“What if your wife wanted to know the results of the tumor DNA blood test, but you didn’t?” I asked. “What if it was extremely important to her to know the result and act on it as early as possible? Would you take the test in that circumstance?”
Of course, I wanted my husband to be happy about the plan for his care – but if a tumor DNA blood test could allow us to act on the cancer with a 6-month head start compared to when it would be found by conventional imaging, there is no doubt that I would push him to take the test. His survival and the happiness of our family was at stake.
Now was not the time to fade away into the tapestry. If we were going to seek and destroy the remnants of this thing, we had to know if it was still there. The body scans were great, but they didn’t tell the whole story.
“It’s just not what I would do,” he said, and I could feel that he was ready to end our conversation. We weren’t getting anywhere, and he was uncomfortable with the topic.
Not everyone would come at cancer from the same place or perspective. There had to be space for each person to arrive at their own decision as to how hard to look for a recurrence. I could certainly understand the bliss and peace of hearing the words, “cancer-free”, after the end of nearly three years of treatment and a normal full body scan. I would also want to stay in this space as long as possible.
But I would want the truth about the cancer even more. I would happily be uncomfortable getting bad news, if we could quickly pivot and start treating it. Honestly, it didn’t matter what the test result would be. It mattered how we handled it.
Never again would I look at a dandelion the same way.
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If you would like to read other posts, here are a few:
1. How It Began. This story is the origins of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began
Absolute Harmony. Watching elephants in harmony with nature brings a new way of looking at my husband’s cancer. https://www.afterhesaidcancer.com/p/absolute-harmony
Extremes. The extremes of poverty give me perspective on my grief.
Go Down Swinging. A boxing lesson leads to a new approach to fighting one’s demons.
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It sounds like some people can’t imagine living a happy life with a challenging diagnosis. But there are plenty of examples of people living with chronic disease and managing to be happy just the same.
Personally, I cannot imagine not wanting to know. Face the problem head on and deal with it. "fight it tooth and nail” as you said, Kristina.