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Debbie’s Caregiver Story

Debbie and her husband of 28 years, Harold, owned a small business together which kept them busy until she started noticing Harold starting to slow down. After he had been diagnosed with myelodysplastic syndrome (MDS), they decided it would be best to sell the business. Even after receiving treatment for the disease, Harold continued to lack energy and Debbie knew something wasn’t right with him.

“When we had our business he would go from morning until closing time. I couldn’t put my finger on it, but I knew something was wrong,” Debbie recalled.

Debbie noticed Harold gradually getting weaker and weaker. They were making frequent visits to doctors and scheduled a variety of tests to determine the issue, including a stress test and colonoscopy. A bone marrow biopsy finally determined the cause of his fatigue- Harold had leukemia, and it was critical. Almost 80 percent of the cells in his body were leukemic.

She and Harold always knew leukemia was a real possibility after his MDS diagnosis, but that didn’t make the news easier to hear. “He and I both thought this was it – that this was the end,” Debbie reflected.

Harold immediately underwent an intense, high-dose regimen of chemotherapy followed by a bone marrow stem cell transplant. A social worker from his cancer center recommended MyLifeLine.org as a way for them to stay connected with friends and family while temporarily staying in Nashville for Harold’s treatment; as they were three hours away from their home.

“I was constantly getting texts and phone calls from people concerned, but I had to repeat the same stuff over and over, and I was getting to where I didn’t want to answer the phone,” Debbie explained.

After Debbie set up a site on MyLifeLine.org to track Harold’s progress, Debbie posted on her Facebook account that they will be posting updates on MyLifeLine.org and to message her for the link. She and Harold were overwhelmed when they received nearly 150 messages from people wanting to follow Harold’s site.

“Harold was overwhelmed that so many people wanted to know how he was doing,” she recalled.

Debbie and Harold spent four months in Nashville, so MyLifeLine.org was an important way for them to keep friends and family up-to-date on his treatment and progress.

“MyLifeLine.org was the way we communicated with people. They looked forward to the updates and we posted almost every day. It kept us busy,” Debbie said.

Although it was Harold going through treatment, Debbie also had to adjust to a new life as his caregiver.

“I was active, I would go to the gym five days a week, I had a job. I went from that to doing nothing,” she recalled. “It was depressing at times. I kept telling myself ‘look what he’s going through, he’s the one going through the tough stuff.”

Harold continues getting chemotherapy  every three weeks for his MDS, but his leukemia is finally in remission. He passed the one-year milestone from his transplant in October 2014, and he and Debbie have been adjusting to their new normal.

”We don’t plan too much in the future anymore. We plan today, live day-to-day and enjoy each other,” Debbie explained. “We take things as we come. This is the new normal.”

Through her experience as a caregiver, Debbie has learned the importance of accepting help when people offer and taking time for herself.

“It took me a long time to learn, but people really do want to help when they offer. Let them; it blesses them. You need the time for yourself, even just to get away for a couple hours,” Debbie said.

Read Harold’s leukemia story.