I haven't been posting very actively on this blog or on Twitter, and this is because I am processing some news I got last week.
My life partner had a nodule on her back. At first, it looked like a shiny papule and I thought it was a basal cell carcinoma so I didn't call the dermatologist right away. Within six weeks, it had doubled in size, and then it took another five weeks to get an appointment. Our dermatologist took one look at the nodule, which was now quite large and melanotic, and did an excisional biopsy. He thought it was probably a squamous cell carcinoma, but the pathology told a different story: melanoma.
Pathology from the biopsy revealed a 10mm tumor with evidence of microscopic ulceration, two poor prognostic signs. Right now, we're in the process of arranging for a sentinel lymph node mapping and a wide excision. After that, there will have to be an oncology consultation to see if there is any role for adjuvant therapy with interferon-alfa or radiotherapy.
We've been through some health issues in the past, but nothing life-threatening. Now suddenly we are facing a vast, malignant uncertainty. In an effort to ground my understanding of what is happening to us, I've been researching melanoma and its prognosis. This tumor is at least IIC and perhaps IIIB, depending on the outcome of the sentinel node mapping. Apparently there is a five-year survival rate of 45-67% for IIC, and 29-65% for IIIB. It is hard to grasp wide ranges like that, but what I take away from these data is that there is a 1-in-2 or 1-in-3 chance that her life may end in the next five years.
All the other information--about cell morphologies, lymphatic spread, most common metastatic sites--tends to blur around the edges, even to my medically-trained mind. Because in this situation, I am not a doctor, I am family, I am an individual person who is as terrified about the development of a terrible disease in someone I love as any person in the same situation. And terror is not an exaggeration. I haven't been afraid of anything in many years, and now I am.
So I have been doing what I do when I am afraid and anxious: a little retail therapy, a little reality TV, and some fearsome rearranging of furniture. Eventually this stage will evaporate and I'll need to find some long-term coping strategy. Recently I have reaffirmed my identity as a writer, so--with my partner's permission--I have decided to write about our journey on this blog, or--to be specific--about my journey as a family member of a person with a serious disease, a family member who just happens to be a doctor. I anticipate a lot of growth and challenge during this journey, and I believe this is the kind of experience doctors--people--need to share. So look for a new category called The Melanoma Chronicles on this blog. And don't worry--I don't plan to let it take this blog over completely.