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 stayed in the intensive care unit for several weeks. Julie spent the days with me, and Pete had the night shift. After I was finally discharged, I went to a skilled nursing facility for rehabilitation before I was able to go home.   

Routine daily activities such as paying bills, home maintenance, yard work and professional responsibilities would have fallen by the wayside if it weren’t for my caregivers. My bills were paid, my house was cleaned, groceries were bought and meals cooked. A neighbor routinely brought over casseroles and delicious desserts to tempt my appetite. Friends stepped in to fulfill my professional obligations. Adonna, a friend who’s a nurse, came to my house weekly to change the CVC site sterile dressing, and Julie learned how to heparinize the CVC lines, which had to be done daily. Friends from outside of Texas came to stay with me so that Julie and Pete could have a break.

Once I’d finished my long ICU stay, Dr. Benjamin started me on a new chemo regimen. Friends and family took me to appointments, lugged my heavy wheelchair around and celebrated when I graduated to a walker. They spent hours with me waiting for scans, lab results, radiotherapy appointments and transfusions. They were with me through radiation treatments, surgery and my lengthy recovery.

My friends and family encouraged me, bolstered my spirits, tried to fatten me up, made me laugh and, most importantly, advocated for me when I was unable to do so for myself. It was as if I was in a cocoon and totally protected. 

Yet when the time came for me to be independent again and I was able to go to appointments by myself, it was a milestone. After being so sick for so long, it felt great to be able to do these things on my own.

Caregivers were integral to my care team

I’ve now been in remission for five years, and one thing has become clear: caregivers are integral members of a patient’s care team.

It goes without saying that I had the best medical care available, and the doctors and staff were and are excellent. But my family and friends also played a crucial role in my retroperitoneal sarcoma treatment and recovery, and I don’t know if I will ever be able to express the true depth of my thankfulness for all that they did.

They eased my way to recovery and survival. Simply put, they are the best.