Waiting

In the car, on the way to my first oncology appointment, I had what, in hindsight, could only be seen as a mental dissociation. I spun out of control, unable to grasp my cancer diagnosis, completely convinced this was all an elaborate mistake. My brain was stuck in a cycle of deep denial, and I could not stop perseverating on this impossibility: that I had cancer. The wheels in my mind slowly ground forward out of this rut, but that too was not without its price. Getting past the deeply rooted denial I experienced forced me to encounter an equally frightening reality. It took me months to come to grips with this diagnosis. Months of slowly putting one foot in front of the other, and, in a spectacularly non-linear way, I pieced together a path in front of myself. 

These days, life does not feel so frighteningly unfamiliar as it did nearly a year ago. I have found comfort in the regular involvement of my oncologist, and feel secure in the care provided by her team, if nothing else. That said, few things feel particularly secure any more. I feel hijacked by this disease, and never more so than when I am waiting for scan results. Last Tuesday, I had my third PET scan, which I undergo every 90 days to ensure the efficacy of my treatment or address that treatment’s failure. I will continue to do this for the rest of my life, barring any substantial improvements by my disease or significant improvements in the medical field. The goal of the scan is to show whether the treatment has rendered my disease stable – that it has been kept at bay for the last 90 days – or whether the disease has gained the upper hand and has progressed further into my body. Breast cancer is known to be tricky. A treatment that works perfectly fine for any length of time can, quite abruptly, stop working. This progression can happen quickly due to cell mutation, and can cause new areas of cancer either in the previously affected systems (for me, this means in my breast, axillary lymph nodes, and bones), or in an entirely new organ. More frightening still, this can occur without any outward signs or symptoms.

Generally, I wait about 2-4 days for results of my scans. As one can imagine, this wait is challenging, bordering on interminable. After my first scan last November, utilized for diagnostic purposes, my oncologist called us that evening with rushed results, so as not to cause us further anguish. However, unless there is a discrete reason to rush the results, they are processed as normal, part of the routine. In theory, I am okay with this. I appreciate that I am not an urgent matter, and can step aside to allow for cases with more pressing information to be addressed prior to mine. I am routine, a follow up, maintenance, for now.

After my first scan, while understandably nervous, I was somewhat put at ease that I would not experience progression. Physically, my breast lump felt smaller. I felt better, and was in significantly less pain. I was unfamiliar with the routine of receiving results, and had resigned myself to waiting upwards of a week for the information received from the scan. These results were, as anticipated, very good, and I received them as a new lease on life, breathing air into my chest that had felt so constricted. Things were working as they should. My second scan was entirely uneventful – things were stable, and though I was nervous, I felt assuaged in the lack of urgency assigned to my case.

Waiting for these scan results was nothing short of brutal. Time ticked by in minutes that felt like monumental hours. I had little sense of prediction for this outcome. I had taken two weeks off of treatment for my hysterectomy surgery, but the surgery itself could potentially lower my bodily estrogen further. I still felt irregular pangs and pains that could be related to the surgery, or could be progression. So much felt unknown, and I was only nine cycles into treatment. While nine cycles is nothing to dismiss, I worried that I would not make it to a full year on this line of treatment. That would not even meet the median number of months of progression free survival, the metric best used in clinical trials for this drug combination. I sat in fear that I would fall short, that I would lose time that I very well know is not mine to claim.

I worried that I would lose my independence, my autonomy, in the potential situation where I would have to change treatments. The metastatic community has suffered a number of losses this summer, and they were fresh on my mind. Young women, women with children and disease profiles similar to mine, women who have survived with this illness for a number of years, and much longer than expected. When a treatment fails, it can be strongly indicative of the likelihood of failure for future treatments. While this is not an irrefutable rule, it indicates the strength of the mutations within the cancer cells themselves, and cells that are inclined to mutate and overcome one drug can become more resistant to other drugs as well. Unfortunately, this is the reality of metastatic breast cancers: at some point, the treatments will fail, and it is still difficult to predict when, or in what manner, or how that will be expressed physiologically.

Life had never felt so fragile to me as it did in the intervening days, following my scan but prior to receiving my results. I grew more anxious by the hour, and felt that I was staring into the barrel of a revolver that I did not hold. I retreated into myself, crabby and frightened, like a wounded animal baring its teeth toward anyone who dared come near. I preemptively mourned losses not yet experienced, but feared in the innermost depths of my being.

At long last, my phone rang. The nurse on the other end had my results: stable. No progression. Things actually looked a small bit better than the previous scan. There is little active disease at this point, my bones showing mostly scarring at the sites of my lesions, and even my primary breast barely registering on the scan. My lymph nodes continue to be clear.

I exhaled in utter visceral relief.