The saga continues…
When my initial pathology report came back five weeks ago, my surgical oncologist relayed the news in such a way that my family and I heaved a great sigh of relief. It looked as though I was done, with a capital D. A few days later, I met with my medical oncologist, Dr. Nelson, and she drew a slightly different conclusion.
Dr. Nelson explained that while I had a fantastic response to chemotherapy, the 2mm of residual tumor found at the time of surgery is not insignificant. She went on to say that there is no way of knowing whether those 2mm of cells were merely left behind because I had not received enough chemotherapy to kill them off or whether they were resistant to the types of chemotherapies I had received. If the latter, there could be additional micro-disease left behind elsewhere in my body, lying in wait to recur. She continued by explaining that as of 2017, the standard of care for triple negative breast cancer patients with residual disease at the time of surgery after neoadjuvant chemotherapy is to receive an additional six months of an oral chemotherapy drug called Xeloda. It was a lot to take in, so I took some time to think it over.
A lot happened in the five weeks that followed. Nate, my mom, and my sister Mary worked around the clock to give me the care and support I needed to bounce back from my double mastectomy and reconstruction surgery. We celebrated numerous milestones like getting my drains removed (albeit on day 19 post op…I might get the record), reaching my hands above my shoulders, and regaining a sense of independence through showering on my own and walking without feeling dizzy. My mom and Nate traded shifts cooking, cleaning, tracking my pills, keeping me company, walking me around the neighborhood, and driving me to and from appointments. After numerous trips to San Francisco to see my plastic surgeon and physical therapist, I am happy to report that I am looking and feeling next to normal. I have nearly regained my full range of motion, and my head went from being completely bald to somewhere between ‘five-o’clock shadow’ and ‘military do’. The other day someone on the street even told me that she “liked my haircut”, marking my official transition from ‘sickly cancer patient’ to ‘badass Berkeley chic’. I’ll take it. Oh and did I mention I am not even winded when walking up hills? My red blood cells are officially on the mend.
The time since my surgery has felt as though it has crept and flown by simultaneously, which I am starting to recognize as a theme, one that I will call the great cancer paradox. Take any emotion and pair it with its opposite and that is what cancer makes me feel. I am elated that the cancer was not in my lymph nodes, that we caught it when we did, all the while angry that we did not catch it at its original size of 8mm, when chemo would have been optional. I am grateful to have undergone a successful, albeit difficult, nipple-sparing double mastectomy with reconstruction that makes me feel some semblance of normal, all the while I am grief-stricken that my surgeons amputated my natural breasts, that I will never be able to breastfeed, and that my reconstructed breasts will never have sensation. I am relieved that there is more treatment available that became standard-of-care merely four years ago while also disappointed that this is not over, that I did not get a pathological complete response, and that this mental and physical saga will continue. Elation and anger, gratitude and grief, relief and disappointment: cancer is humankind’s most sadistic rollercoaster and once you are on, you can never get off.
I have decided to move forward with the Xeloda treatments and plan to start my first dose next week. Nate and I are anxiously waiting to see what this decision means for our quality of life for the next six months. While most women tolerate Xeloda fairly well, the side effects can range from mild to debilitating to somewhere in between. The most common side effect is ‘hand and foot syndrome’—a burning or ‘walking on glass’ type of sensation. My doctor has warned me to avoid activities that could spark or aggravate hand and foot syndrome such as long hikes, runs, or anything that involves an abrupt temperature change like hot tubs or walking on a hot beach. Nate, Mary, and my brother-in-law Joe graciously helped me secure an elliptical off Craigslist so I can exercise without the added pressure on my feet. We are preparing as best we can and holding our breaths to see what this next phase looks like. If all goes well, I’ll finish the Xeloda by November and have my exchange surgery (expanders will be swapped for implants) in December or January.
While the past eight months have been emotionally and physically exhausting, a day has not gone by in which I haven’t received some sort of support. It has come in all shapes and sizes and has kept my hope alive. So thank you, thank you, thank you. It has been a hard journey but I have never felt alone.
Much love,
Katie
P.S. I am not sure who sent me the Bunny James Box full of high-protein snacks, but that was a very special treat. Thank you!!
