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Transplant patient now welcomes change

by Heather Murphy
Public Relations
Let’s face it, nobody likes to move. But Denyse Clark says it doesn’t have to be a bad experience.

Denyse Clark cuddles in her new bed in 8 West with daughter, Elyse, 15, who recently finished her freshman year of high school.

“They all felt so bad having to move me after what I’d gone through. My situation was so unusual, being mid-transplant, new insurance, they could’ve chosen not even to admit me in the first place. They truly are the most exceptional staff I’ve encountered anywhere.” 

Clark, originally diagnosed in 1997 with non-Hodgkin’s lymphoma, is one of the patients in the hematology/oncology unit that was temporarily located on 6 East but has now moved back to 8 West. The move from floor to floor is a mild adjustment compared to what Clark has faced for the last five years. 

She began her fight against cancer with her primary oncologist in Charleston, Angus Baker, M.D. 

Her first round of chemotherapy held the cancer at bay for six months. She then had several treatments with Rituxin that resulted in three more remissions but it wasn’t until she participated in a clinical trail with Zevilian at the Mayo Clinic in Florida that she went into her first complete remission. Unwilling to relinquish control of her body, the cancer returned seven months later. Clark’s two best options for remission were a bone marrow transplant or a stem cell transplant. Clark opted for a stem cell transplant. Baker recommended a doctor at Roper Hospital and she began her treatment there.

A conditioning round of chemo and stem cell boosters in December led to the harvesting of almost 10 million stem cells on New Year’s Day. She then began three more rounds of chemo to prepare her body for the transplant. The next blow to Clark came in March when her employer, TLC Laser Eye Centers, switched its insurance carrier to one that didn’t include her hospital or doctor. Because of the difficulties involved with insurance issues, Clark realized that she was going to have to switch hospitals.

“I was devastated. I was mid-transplant and all my doctors were at this one hospital. I was terrified to come to MUSC. I’d perceived the service as a clinic where you never knew what doctor you were going to get. I realize now that I am too smart and have lived here too long to believe that. But I was having serious doubts about continuing the transplant, so I called my pastor for reinforcement,” Clark said.

Her children, parents, and pastor encouraged her to continue with the procedure, so Clark adopted the motto “Going for the Gold” and decided that she would triumph over her cancer and any obstacles blocking her way. She braced herself for the switch and was later surprised by her positive encounters with all of the staff at MUSC. 

“The minute I met Debbie Frei-Lahr and her coordinator, Jill, I felt that God had sent me to them. She held my hand and sat on the edge of the bed and suddenly I felt like MUSC was where I was supposed to have been all along.” 

Clark leaned in and gestured toward the doorway, “The service quality of all the people that I have met here has been unbelievable. Each department does little things to make you more comfortable,” she said. 

 Like a hurdler closing in on the finish, Clark still had a few more bars to leap before finishing the transplant. After taking two months for her insurance to be approved, the catheter that had been placed in her chest cracked and needed to be replaced.

“For a second time I was really starting to question whether or not I should go through with the transplant. I decided to stick with it and everyone was so wonderful. So many people from MUSC called me before and after the surgery, just to see if I was doing ok. It really made me feel like everyone cared and was truly concerned about me.” 

Clark’s last anecdote about her most recent stay involved the actual transplanting of her frozen cells. 

“The nurses told me that the cryopreservant has a nasty smell and taste, kind of like a mixture of sour milk, pluff mud and garlic. Cheryl Groves, one of Dr. Baker’s chemo nurses told me to put an orange peel in my mask to make it a better experience, which it did. I smelled nothing but an orange grove the whole time. Plus, three MUSC nurses, including the floor manager, stayed with me during the entire procedure. When I called Dr. Baker’s office afterwards, I told his nurse and my friend Diane when she asked how it went that ‘not only did I survive today, but I thrived today.’ I truly am at peace now about the transplant process and everything else since I’ve been at MUSC.” 

Debbie Frei-Lahr, M.D., said, “Denyse is pretty special because she’s had to deal with the disease for awhile and has learned a lot about it to make it through, which is often really hard for a patient to do. You can read things that are pretty scary. I’ve been impressed by her level of knowledge and that despite some of the information that she’s received, she’s been so upbeat and positive.”

 Frei-Lahr also mentioned how important it was to not only consider Clark’s needs but those of her family as well. 

“They waited to admit me until after Memorial Day because they were worried about interrupting my daughter’s exams,” said Clark. 

Eyes widening, Frei-Lahr nods enthusiastically, “It’s a very special group that treats hematology and oncology patients. They become part of the family so much so that the patients will come back months and years later to visit their nurses. They can also be such a large source of knowledge through teaching the patient about his or her disease and how to care for it.”

Clark said that it was important for her to tell the community about her many positive experiences at MUSC.  “I’ve been calling everyone I know to tell them about the wonderful people at MUSC,” she said.

So despite all of her ups and downs in treatment, insurance, and experiences, not only did the move from 6 East fail to faze her, but it seems that the staff on 8 West has done everything above and beyond to make all of Clark’s experiences comforting ones during her stay at MUSC.