Retroperitoneal sarcoma survivor: An ode to my caregivers

A cancer diagnosis was the furthest thing from my mind when I had a myelogram for persistent left leg pain in February 2010. But when the interventional radiologist and the neurosurgeon came into the room, I knew that something was wrong from the look on their faces. They said I had a large mass behind my lower abdominal organs and needed a biopsy. The results showed I had retroperitoneal sarcoma, a rare type of sarcoma. My retroperitoneal sarcoma treatment at MD Anderson There was no doubt in my mind where I was going. I had observed the level of care and the “we can do it” spirit at MD Anderson while doing some contract work there. Within a week, I had my first appointment at MD Anderson with Robert Benjamin, M.D., had a treatment plan (chemotherapy, radiotherapy and surgery) and a central venous catheter (CVC) was inserted.  I didn’t tell many people about my retroperitoneal sarcoma diagnosis and intended to keep working during my treatment. But on my third day of outpatient chemotherapy, I woke up confused with visual hallucinations and was admitted to the ER. I didn’t work for the next two-and-a-half years. From that day forward for the next year, I was seldom without a caregiver. The people who helped me through retroperitoneal sarcoma My sister, Julie, and a friend, Pete, drove from Denver to Houston to be with me. They didn’t realize at the time that they would become Houston residents for the next year. It was Julie’s first year of retirement. I was very ill – so ill that I had to stop chemo – and...

Domestic violence and caregiving

October is a month dedicated towards raising awareness for a variety of things, including breast cancer and domestic violence. Intimate Partner Violence (IPV), more commonly known as domestic violence, can happen to anyone. It affects all races, ages, educational levels, socio-economic classes, genders and sexual orientations. Domestic violence describes emotional, psychological, sexual, or physical abuse by an intimate partner. These abusive behaviors are aimed at maintaining power and control over a partner, and may be hard to recognize at the beginning of a relationship.  Abusive behaviors present in domestic violence tend to escalate over time, and intensify during significant life events where reliance on a partner increases, such as receiving a cancer diagnosis. This becomes a particularly sensitive time, as spouses, partners or significant others often also become the primary caregiver, which then increase their involvement with the patient’s physical, emotional and financial needs. Signs of cancer-related domestic violence After a cancer diagnosis, it is common for patients to become more reliant on an intimate partner. This shift can be particularly stressful for all involved since it requires adjusting to a new normal. However, there are some red flags to watch for. For instance, the caregiver may: Respond to the patient’s cancer diagnosis in a self-centered, minimizing or even dismissive way (e.g., they focus on how the diagnosis is affecting them and look for sympathy from others). Not acknowledge the patient’s fatigue and/or increased need for rest. The caregiver may purposefully wake the patient from naps, prevent resting and/or assume that patient can resume normal household chores before fully recovering from treatment. Make negative comments about changes in the patient’s...