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Living with lymphedema means lifestyle changes
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FarkTo Teresa Postma, her lymphedema is as life-altering as the cancer treatment that caused it.
“It’s not life-threatening, but it does change your life,” she said. “You have to relearn how to do a lot of things. And this is for the rest of my life.”
Lymphedema occurs when lymphatic fluids accumulate in the body, most often in the arms and legs. The accumulation causes the limbs to swell, sometimes dramatically.
Lymphedema develops when lymphatic vessels are missing or impaired or have been damaged or removed in the treatment of such diseases as breast cancer.
If lymph nodes are removed or severed during breast cancer surgery, the remaining lymph nodes will occasionally pick up the slack. However, lymphedema occurs in about 25 percent of breast cancer surgery patients.
Onset of lymphedema can begin shortly after surgery or even years later. And while lymphedema is rarely life-threatening, it becomes an aesthetic and emotional reminder of the cancer that caused it.
It also requires a lifetime of vigilance, says Postma.
Postma first noticed a painful mass in her breast two years ago, at the age of 37. A mammogram showed a large tumor in her breast.
Doctors began by shrinking the aggressive tumor with chemotherapy and then removed the breast along with lymph nodes. Postma underwent still more chemotherapy and 36 weeks of radiation. Doctors now consider her cancer in an “observation mode.”
About four months after her cancer treatment ended, Postma noticed a slight swelling in her right hand. Because a representative from the American Cancer Society had warned her about lymphedema, she immediately sought care at the Rapid City Regional Rehabilitation Institute.
Physical therapist Karine Carpenter, who specializes in lymphedema treatment at the Institute, said patients need swift care when they suspect lymphedema because treatment can reverse Stage I lymphedema cases. Once to Stage II or III, lymphedema is irreversible.
Treatment of lymphedema combines a series of light massages called manual lymph drainage and specific pressure used on the affected limbs. It’s a routine that lymphedema patients like Postma incorporate into their daily lives.
Postma, whose lymphedema is Stage II, ends each day with manual lymph drainage, which promotes her body’s ability to transport lymphatic fluids effectively. She then wraps her hand and arm in gauze, providing enough pressure to keep swelling at bay without causing finger numbness. Then she covers the wrapping with a heavy night garment, which adds more pressure. She also elevates her arm for 20 minutes each evening.
In the morning, she removes the night compression garment and wraps and puts on a lighter garment that she wears throughout the day.
“Consistent use of the compression garment is very important,” Carpenter said. “It is a chronic ailment.”
Lymphedema sufferers are at an increased risk of infection in the affected limb, which means they must be extra cautious with injury, Carpenter said. They also must avoid heavy lifting or excessive use.
Those restrictions have affected Postma the most.
“I was very active,” Postma says of her life before cancer. She played tennis, basketball and volleyball. She also played the guitar and flute.
Because of lymphedema, Postma has had to give up or limit most of those activities. She can’t lift her kids with her right arm and can’t even push a shopping cart around the grocery store.
The sleeve limits her ability to do things such as braid her daughter’s hair and play the flute and guitar.
“It’s the life changes. So many things that I loved to do … Those are not options for me,” she said.
Even writing has become an issue for Postma, who once loved to journal. She’s in the process of learning to write with her left hand.
Postma admits that early on, she dreaded her nighttime routine. It not only reminds her family of the cancer, but it takes time and energy. She’s since grown accustomed to it.
“I made my peace with it …I pray for people. That’s my prayer time,” she said. “How do you turn a curse into a blessing? I don’t hate it like I used to.”
Carpenter said lymphedema treatment does take time and effort, but it’s the only way to avoid sometimes drastic swelling.
It also allows cancer patients to maintain their appearances and move on from their cancer treatment. “It’s very important to people,” she said.
While Postma is far from comfortable with her lymphedema treatment routine, she’s finding it easier with each day. “I’m not friends with it yet,” she said.
But she wants others like her to know there is help and hope. And lymphedema can be managed.
“It’s OK to feel overwhelmed by it … but don’t stay there. You can’t stay there because there are too many options,” she said. “Get there (to the doctor) right away. Don’t wait.”
Contact Lynn Taylor Rick at 394-8414 or lynn.taylorrick@rapidcityjournal.com.
Teresa Postma pulls on her night compression garment as she demonstrates how she prepares her arms for the night to help with her lymphedema. (Seth A. McConnell/Journal staff)
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