Desmoplastic small round cell tumor caregiver: How my husband and I confronted sarcoma together

When my 40-year-old husband, James, was diagnosed with soft tissue sarcoma in November 2014, we were completely shocked. Although there had been cancer in his immediate family, we never thought James would have cancer. The most shocking part was that James's specific type of sarcoma, desmoplastic small round cell tumor (DSRCT), is a rare and aggressive form of sarcoma that's usually only seen in kids. Naturally, James was upset, confused and nervous. I didn't know what to think, but I immediately felt like everything would be OK. James has an assertive and determined attitude, and I knew I could feed off of it as we faced his sarcoma together.

How James' sarcoma treatment affected our lifestyle
James initially went through 14 rounds of inpatient chemotherapy in California, where we live. We had a four- to five-day hospital stay every two weeks to reduce the size of the tumors in his abdomen and abdomen wall. Overall, James' side effects were not as bad as we expected. In the beginning, he got nauseated, but quickly found that he was OK if he ate. After that, he lost his hair, experienced fatigue, neuropathy and a metallic taste in his mouth. He also was hospitalized twice for high fevers, which frustrated him because it disrupted his chemotherapy schedule. 

Unsurprisingly, our life changed when chemotherapy started. James stopped working because his priority was treatment and avoiding illnesses. We went from living a married-with-no-children lifestyle to one guided by treatment dates, schedules and side effects. It took me several months to realize that we wouldn't be able to go out for dinner or take trips for a while. Although I knew James' health was the priority, it was hard to adapt to our new normal, especially because we were both young.

All of the changes proved to be worth it when we realized his tumors were shrinking. In July 2015, James completed his 14th round of treatment and was told he was ready to have debulking surgery to remove the remaining tumors in his abdomen.

Receiving hyperthermic intraperitoneal chemotherapy at MD Anderson
While researching debulking surgery, we found that MD Anderson pioneered and offered hyperthermic intraperitoneal chemotherapy (HIPEC), a highly concentrated, heated chemotherapy that's delivered directly to the abdomen after surgery. The goal is to destroy any active cancer cells left behind.

As soon as we learned this, we traveled to Houston so James could start this specialized treatment.

Every MD Anderson surgeon and oncologist we met was great. We felt comfortable and confident that we were in good hands both before and after surgery. While we were there, I found a support group for caregivers that helped me cope with everything we were going through. Being able to verbalize my frustrations and feelings to others who understood what I was going through took a lot of pressure off of me. This taught me an important lesson that I now share with others going through cancer: you are not alone.

I now share this lesson as a volunteer with myCancerConnection, MD Anderson's one-on-one support program that connects patients and caregivers with others who've been there. I tell them my story, but more importantly, I listen to theirs.

Living with and without cancer
The last year has passed by quickly. It's been tough, but we've had many laughs along the way. After 11 months of chemotherapy and surgery, James is doing well. He will continue treatment in California, as there's a high likelihood his cancer will come back. But we're committed to never giving up no matter what crosses our path. 

This experience has made me realize that a lot of things I believed were important no longer deserve room in my worry bank. I've learned to live my life without regret because you're not guaranteed tomorrow -- no matter if you're living with or without cancer.

To connect with other cancer patients and caregivers through myCancerConnection, please call 800-345-6324 or visit myCancerConnection online.