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
while doing some contract work there.

Within a week, I had my first appointment at MD
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.