I’ve been living with metastatic breast cancer for two years, two months, and 15 days. For the longest time - close to a year - I felt like a cancer newbie. In groups, I was always the youngest one, the one with the kid, the one with so much still on her plate. Until, all of a sudden, I wasn’t.
Clinical Trials
After I hit a year, I felt like I had hit a stride. I was adjusting to my life in this new normal (as much as I didn’t like it). And our family was finding new routines to accommodate my cancer diagnosis. And then, as life almost always does, things changed - my disease progressed in my bones, and I had to switch to my second line of metastatic breast cancer treatment, a clinical trial.
After living with bone-only metastases for over a year, I was diagnosed with brain mets in March of 2019. I underwent stereotactic radiosurgery (targeted radiation) to treat the two small lesions that had popped up.
Then about a month later, a CT scan revealed that my liver now had cancer involvement as well. I had been on a clinical trial but was kicked off the trial at that point due to liver progression.
Needing a bigger treatment than just hormone therapy due to the new involvement in both my brain and my liver, I switched to an oral chemotherapy. I was on this drug for about nine or so weeks before my oncologist noticed a rise in my tumor markers and elevated liver enzyme numbers in my bloodwork.
She ordered a PET scan ASAP, which revealed what she had suspected: the drug was not working and my liver lesions were growing. Onto chemo number two, and my fourth line of treatment.
IV Chemotherapy
Up to this point, all of my treatments had been oral therapies. This was the first time I was on IV chemotherapy. Several weeks into treatment, I lost my hair. After 12 weeks, my doctor ordered the first scan on this drug.
We were all hopeful and optimistic - although the drug was very hard on my system, we hoped it was working. It was not.
Onto another chemotherapy, my fifth line of treatment. As my oncologist and I discussed different treatment options over the following days, I had my regularly scheduled brain MRI - the six-month follow up to the targeted radiation I had received back in April. I was seemingly asymptomatic. None of us expected anything to show up on the MRI. We all hoped and anticipated that life would proceed as we had planned for my next treatment option.
"My first thought when I received my cancer diagnosis was 'Oh My God, I’m going to die.' Once I started treatment, my life developed somewhat of a new rhythm, but I couldn’t compartmentalize my fears."
It turns out that I wasn’t asymptomatic. I had been experiencing numbness in the left side of my face, similar to Bell’s Palsy, that is a common symptom of leptomeningeal disease. Leptomeningeal metastases are often considered the big baddie of metastatic cancer. Lepto mets, or “lepto” as it is often called, are somewhat like meningitis, but with cancer cells. Lepto occurs when cancer cells are able to invade your cerebrospinal fluid and find homes on the meninges - the covering of the brain that acts as a protective barrier.
Once it is established in your cerebrospinal fluid, it travels throughout your brain and the full length of the spinal cord. You can develop lepto lesions anywhere along that route.
Typically, the only treatment for lepto is whole-brain radiation, and it is considered palliative and not usually curative. The life expectancy with a lepto diagnosis is grim, and measured in months, even with radiation. I was understandably terrified, hearing this diagnosis.
Proton Radiation
However, by some stroke of good fortune, I was referred to a research radiation-oncologist who has been using proton radiation to treat leptomeningeal disease with compelling results. As opposed to typical “photon” radiation, proton radiation is a much more targeted therapy. It damages far less healthy tissue while targeting diseased tissue very well. I immediately scheduled a consult.
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Two weeks later, I found myself in New Jersey, receiving 10 rounds of whole brain and whole spine proton therapy. The little baby wisps of hair that had started to grow back fell out again. And the fatigue I experienced after the therapy was crippling. But I was still here, and, when not felled by my body’s exhaustion, still relatively functional.
My first thought when I received my metastatic breast cancer diagnosis was “Oh My God, I’m going to die.” I don’t think this thought is uncommon. Once I started treatment, my life developed somewhat of a new rhythm, but I couldn’t compartmentalize my fears.
I knew the breast cancer statistics I faced: less than 30% of those with a metastatic diagnosis live for 5 or more years. With each progression, each new drug, each new organ invaded, those fears haunted me. They taunted me, and brought out the worst in me, reminding me of the falling sand in an hourglass I resented. I couldn’t see how much sand was left, only that it kept falling, seemingly faster and faster, each time I looked at it.
Not Your Typical Bucket List
Finally, one day, while we were waiting for my proton radiation appointment, I told my husband I wanted us to make a bucket list. Not the typical bucket list, because that bird has flown for us in many ways. But a realistic bucket list: things close to home or driveable, for example.
We had always talked about trips to France, Italy, and Japan, but those were off the table. I’m a stressful travel companion in my best health. And my husband’s work obligations, my treatment challenges, medical expenses, and our son ruled out any sort of major travel.
While I’ll never be able to eat a chocolate croissant and sip espresso while I sit and look out at the Eiffel Tower, we’ve been able to start carving pieces out of that bucket list from home, surrounded by family.
And truthfully, that’s really what I want anyway.
Emily Garnett is a former elder law and special needs attorney whose practice focused on adult guardianships, capacity issues, care management and public benefits.Today, she is the face of Beyond the Pink Ribbon, an advocacy and awareness platform where she documents her experience living with metastatic breast cancer. Emily also serves as the host of The Intersection of Cancer & Life podcast.
