As a part of our Faces of Courage series, we are featuring a caregiver story. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.

Our Caregiver of the Month for May is Marlene Nei. Here is her story:

Marlene Nei, Caregiver to Bill, Wisconsin, USA

GISTory

In November of 2010, Bill went for his regular check up with our PCP, who found that Bill had a large tumor. Just two days prior, Bill had felt fine and gone golfing with our son. Four days later, he was diagnosed by a GIST specialist and headed for surgery. We were told that things looked grim, and because of the size of the tumor, if it couldn’t be removed intact, the surgeon would close him up and cancel the surgery. Our initial reaction to the diagnosis was total shock.

After an eight-hour surgery, at the University of Chicago, the tumor was totally removed, but there were metastases. Bill had a rough post-op, hallucinating from the pain meds, hemorrhaging from a bleed in his colon, and to top it all, he was diagnosed with C-diff.

He was hospitalized for weeks, followed by a long, bedridden recovery at home. Bill is KIT Exon 11 and has been on Gleevec, 400mg, since early 2011. He has a CT scan every nine months, deals with nausea, diarrhea, bloodshot eyes, pain in his back, legs, and feet, but to date, his scan results have been NED (No Evidence of Disease!) YAY!

Coping With a Loved One’s GIST Diagnosis

In the early years, following the diagnosis and surgery, I kept busy working, taking care of Bill and obsessively doing GIST research, advocating and sometimes arguing long and hard when needed. Fortunately, after surgery, our surgeon, Dr. Roggin, told me to contact the Life Raft Group.

The Life Raft Group has been our lifeline, safety net, and a true special dividend in our lives. I cannot express my appreciation and love for the staff, caregivers, and patients, and the close bonds formed with so many, including my three GISTer Sisters as well as another caregiver. We all hold one another up and do a lot of talking and laughing, which is the best medicine I could ever have.

Advice for Fellow GIST Caregivers

My advice to other GIST caregivers is the same advice I give myself. Stay positive and stay in touch with other positive friends to maintain a strong support system. Don’t be afraid to give in to bad days, because we all have them. Do something each day for yourself that makes you feel good. Yoga, meditation, a walk outside, even a high calorie, gooey ice cream sundae as a treat, all work for me.

Hobbies

Bill has difficulty walking, but, as long as he can use a cart, he plays on a weekly golf league. Together, we go for a car ride every afternoon in our area. We live close to our son who visits with us frequently.

Motto

DON’T EVER GIVE UP.

Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In collaboration with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.

Criteria for Caregiver of the Month:

  • Patient must be part of Life Raft Group Patient Registry
  • Caregiver is regularly active on LRG platforms (GIST Chat, LRG events)
  • Patient provides constant medical updates and participates in our tissue bank

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

Read more member stories