You faced breast cancer, from the terror of diagnosis to the ambiguity of treatments to the trials of surgery. You emerged…bald, but grateful to go on with your life.
But then. Imagine discovering that your life has been immutably changed. All you’ve faced pales, as you discover the abject horror of the ten dreaded letters of ‘lymphedema.’ You’re disabled, disfigured, and it can always get worse. But that’s only the beginning!
After months of fearful questions without answers (What is going on with my arm, my fingers??), you’ll ferret out some info online. You’ll learn that your condition is lifelong, that every day of your life it demands precious hours that your husband, your children, your friends will never grasp. In fact, they’ll get impatient… Oh, lymphedema, again? Still?
If you’re fortunate, a doctor will listen to you. You’ll get an appointment for care. Then you’ll be instructed in how expensive this condition is. How your sleeves will cost hundreds of dollars a year, and you’ll be stocking up on bandages and tape for wrapping, lotion and gloves for massage, larger shirts and jackets to cover your arm, antibiotics for your recurrent infections, etc. Your family will begin to hate lymphedema almost as much as you do, as they give up things they’d hoped to have. Because you’re so needy. (If they’re teenagers, they’ll probably hate YOU for it, at least for a while…).
But at last. Your insurance company acknowledges this condition. You find you’re permitted to go to the therapist when you’re in pain, overwhelmed. That you no longer have to choose between helping yourself, and taking away things from those you love. Your hospital even opens a Womens’ Center and provides funding for sleeves!
You’re no longer alone, you’ve connected with a few people who can even spell this hateful word…though your Google dictionary cannot. You have fewer hours in your day, bigger clothes in your closet, but you’re learning that, with support, life with lymphedema can be maneuvered around. Maybe, someday, enjoyed again. Time will tell.
To the LTA Co-sponsors:
Thank you for taking up the plight of millions of women who suffer these painful stages of lymphedema. My husband and I have been shocked and disturbed by the lack of effective care given to women with this condition. Hard-working young mothers to confused grandmothers get trapped in the lymphedema maze, uncertain of what’s happening, of how to find resources, and how to pay for care.
As more and more women survive cancer care, the question confronts us, “HOW do we live with lymphedema? Not just for 5 years, but for 10, 20 or 50 years?” Thank you for doing all in your power to provide funds to answer this question for women whose struggles are fresh each day.
