Lori Puente said she didn’t know what multiple myeloma was when her husband was diagnosed with the cancer of the bloods plasma cells back in 2008.
Two years later following treatment at the UAMS Myeloma Institute for Research and Therapy, Dave Puente is in remission and has returned to work as a telecommunications engineer. Lori, who was by his side for treatments and was his constant caregiver, has moved on with her life as well, but the Californian found herself back in Little Rock recently to speak to myeloma patients and caregivers at an institute event.
She described being a caregiver as a journey from that frightening day when Dave was diagnosed through his rigorous treatment. She was on duty 24-hours-a-day/seven days-a-week, she said, as first responder if he had a fever or experienced pain.
“The caregiver has to know what to do and who to call,” Lori said. “And I think a myeloma caregiver is unlike any other I’ve come across because the caregiver is so integral to the patients health and recovery.
Since the majority of patients at the Myeloma Institute are treated on an outpatient basis, the caregiver’s role is extremely critical, said Tammie Glover, R.N., director of nursing and patient education in the Myeloma Institute. “You need to have a good support system because without a caregiver, the patient would need to be kept in the hospital during treatment.”
“It’s very therapeutic to be treated on an outpatient basis and be able to get up and drive in or walk in for treatment but you need a caregiver to allow that.”
“A good caregiver will help the patient keep track of the many medications they need, most of which must be given on different schedules,” Tammie said. The caregiver also is a resource of information for physicians and nurses when the patient is being examined.
Lori said she and her husband feel fortunate to have found the Myeloma Institute. Through the course of his treatment, she felt supported as a caregiver. The nurses and staff were always willing to help her.
“I was so grateful to them for their willingness to give me the immediate support I needed,” she said. “They gave me every opportunity to get the data I needed to do my job as his caregiver.”
The institute hosts weekly classes for caregivers on how to handle the patients central line, which is a tube installed into a vein in the chest for delivery of medication. For outpatient treatment, a caregiver must know how to connect the medication to the central line and clean the line.
“We can teach anybody to handle it,” Tammie said.
Tammie said a new caregiver class is being developed for early 2011 to provide more in-depth support and resources for caregivers. She said the course will provide more information on what caregivers can expect, what multiple myeloma is and what the treatment will be like. She said the course also will remind caregivers that they need to take care of themselves as well by getting rest and maintaining a good diet.
One outlet Lori found was a blog, which started out as an electronic means to update family and friends on her husbands condition as treatment progressed. She continues to write online now about life and her journey as a multiple myeloma caregiver at her blog Riding the Wave, which she says is healing to her.
Lori was recently selected by Millennium Pharmaceuticals for their Millennium Myeloma Ambassador program. As part of the program, she will tell her story to support groups, conferences and other meetings.
She said she and her husband were excited to be asked.
“I didn’t want to be consumed by multiple myeloma,” Lori said. “But I am honored to have the chance to share my story about moving forward with strength and courage.”
She said both traits are important for caregivers so that they and the patient don’t continuously worry about things that haven’t happened yet.
“If there was one message I would hope to convey, it would be to have courage,” Lori said before her talk at the MIRT Meet. “My parents taught me that you never know how you’ll do until you face a challenge and that you should never doubt your ability to overcome that challenge.”
She described her experiences as a caregiver as “sometimes exhilarating, sometimes frightening.” As Dave is still receiving regular checkups and is being closely monitored, Lori said it is comforting and gives them the confidence not to worry about every little ache or pain.
“I think the worrying is a wasted emotion,” she said. “If it’s a sunny day, I want to tell Dave, ‘Hey, let’s go ride our bikes.'”
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