363 Points Down

BY Kathi

At age 35, Lori was diagnosed with Stage II breast cancer. She was a young wife and mother of a then three-year-old son. About ten months ago, ten years after her initial diagnosis, she was diagnosed with metastatic breast cancer. This is a post from her thoughtfully-written blog, Regrounding, about where she’s at now. With her gracious permission, we republish it here.


Breast cancer tumor marker image from MIT Spectrum.

I has been nearly ten months since every breast cancer patient’s worst nightmare became my reality.

I can still remember looking behind me at the evocative 5-year mark, as tamoxifen came to an end and there was nothing but life ahead of me. I had dodged a bullet, and while there were still pesky follow-up visits, each day was a step closer to being “cured.” My heart ached for those who were not likewise blessed to have life after cancer, and even as I inched my way further and further from treatment, I vowed to never take my good fortune for granted. That is, of course, all it was. It could just have easily been me. In fact, it just as easily became me.

Sometimes women who have put treatment for early stage disease behind them demand that I believe that they understand; as if their own experience is otherwise “less than” – less authentic, or less powerful, or less worthy. Of what I do not know. Of course their own cancer journey is a powerful, life-altering, life-appreciating experience. I have no need or desire to compete. I stand ready to celebrate the death of every cancer cell, be it in their body or my own. But a diagnosis of mets is different.

Ironically there are days when I’m not sure I have street cred amongst the MBC crowd either. My cancer remains asymptomatic, and predominately detectable by tumor marker. My scans are stable, and if anything we seem to be reversing the course. Having watched my tumor marker rise precipitously for two years, from below a normal of 42 to a peak of 491, I have been comforted by its persistent drop since I resumed treatment in August. I have no pain, no neuropathy, no alopecia, no nausea. I am weathering my treatment as smoothly as anyone might.

Too smoothly, perhaps. While it appears on the outside that everything is just fine, it doesn’t always feel that way on the inside. And yet the pressure to “count my blessings” and “be positive” is enormous. Most days being positive comes easily. I am optimistic and confident that I will beat this back. But every now and again the gravity of having metastatic disease washes over me, and I have to dig deep to find those blessings. Some days I just need to be angry and sad and frightened. And I need it to be okay with the people around me.

If surviving an early-stage breast cancer diagnosis is a brush with death, then living with metastatic breast cancer is a dance with it. There will never again be a cancer-free day (which is not to say that there ever were, but sometimes I could act like it). Instead of an annual scan, I am forced to face my fears every four weeks and to wonder at night what it is like to die of breast cancer. Trying to live every day as if it’s your last, with appreciation for the gift that it is, and the taste of its brevity is, on one hand exhausting, and on the other the most exquisite gift.

As my tumor marker inches down, from 491 to 128, I am grateful for each of those 363 points it has dropped, even if none of us really knows that they mean. Markers measure response to treatment, and clearly treatment is working. What happens when I arrive at “normal” I do not yet know. I’ll keep you posted…

For more information about tumor markers, you may visit the following links:
National Cancer Institute – Tumor Markers
American Society of Clinical Oncology’s Guidelines for Tumor Markers for Breast Cancer
~ Kathi

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