When Bob Was Diagnosed With Breast Cancer - Part Two
I had made a decision to go to all of Bob’s appointments with him, medical, treatments, scans, etc. The reason why was he had cognitive and memory issues along with short-term memory loss from his chemotherapy. Some call it “chemo brain” and I couldn’t agree more. Bob was embarrassed because it made him feel stupid. Bob and I did get back together a few months later. After Bob completed his chemotherapy he was then scheduled for his mastectomy in May. After his mastectomy and before his radiation we were married on the island of Maui in Hawaii on July 15, 2003. When we returned from Hawaii and Bob was healed from his surgery he began his radiation. When Bob had completed his treatments everyone assumed his life would go back to “normal.” That is the furthest from the truth.
Living with stage 4 breast cancer
Bob never worked another day from when he was diagnosed with stage iv breast cancer. He went out on disability back in January which then led to Bob being permanently disabled. He could no longer work because of bone pain, his cognitive and memory issues, neuropathy in his hands and feet, and fatigue. All of this at forty-one years old. Bob also started Tamoxifen, hormone therapy for ten years. I believe when Bob started on Tamoxifen he was only going to be on it for 5 years, then the protocol was changed to ten years. Many patients male and female can not tolerate being on Tamoxifen because of the side effects. So they stop. Bob felt he didn’t have that option because he was living with stage iv breast cancer. Yes, Bob had periods of time when he wasn’t on treatment, but as your disease progresses you are on and off of treatment. Bob went a few years without treatment.
Treatment and monitoring never end with MBC
Stage iv breast cancer patients live with constant follow-up - doctor’s, appointments, lab work, and scans. I do not know what it would like to be the patient, but as a caregiver, I had scanxiety too. Scanxiety describes the apprehension felt by people with cancer as they wait for their next scan results. Bob saw his oncologist every month for years. The furthest he ever went without an oncologist appointment was three months. I lived for a long time waiting for the other shoe to drop. I finally had to make the decision to just not dwell on the what if’s and live in the present. We would deal with it as it came, and we did. When Bob started living to twenty-five months, then thirty, and thirty-six he was outliving his prognosis. It is still unbelievable to me that Bob became an “outlier”. An outlier is someone that lives much longer than they were expected. Bob never felt like he had a choice when it came to drugs and treatments. He felt like what were his options? If he stopped the drugs or treatment that were prolonging his life, he would die. When you are living with stage IV breast cancer, treatment never ends. Bob was an outlier and he lived seventeen years with metastatic breast cancer. Bob lost his life to metastatic breast cancer on February 28, 2020.
Do you find it easy to advocate for yourself?