Lymphedema - From Anger to Action
How can anger be transformed into action after a medical injustice? After developing lymphedema (an arm swelling) a year after cancer surgery to remove lymph nodes, I went postal.
No, I did not run down to my nearest Post Office and do damage.
I silently raged against the surgeon so eager to remove cancer from me and detect spread that he forgot I might survive longer than a year.
I'm certain my surgeon, a small-town doctor with no specialty in cancer surgery, meant no harm.
After all, he did take the Hippocratic Oath.
It's just that he failed to warn me that my arm might swell permanently from the assault to my lymph nodes.
He neglected to inform me how I could reduce my risk of developing lymphedema.
Just giving me a pamphlet or Internet link would have helped.
He probably concluded in 1996 that I would not live to see the year 2000, and therefore it mattered not if my arm ballooned up.
But here I am in 2010, still alive and kicking, with an arm permanently enlarged, wrapped in a daily compression sleeve not of my own choosing.
It's a fashion faux pas, especially when the thermometer soars.
After I received six weeks of treatment at the lymphedema therapist's office, I spent a year in self-massage, bandaging, special exercises and self-pity to keep the swelling under control.
None of these procedures allowed me to ditch my compression sleeve.
A daily, ugly reminder of my cancer, this sleeve became a bane.
Sometimes I wore short sleeves and imagined the curious public staring at my arm.
But I could never don sleeveless tops, as this would reveal the silicon band holding up my sleeve, a tell-tale sign screaming, "I'm different.
" And when Michelle Obama showed off her beautiful arms in sleeveless dresses, I felt my anger rise again toward the inequity of it all.
But finally I turned my bane into a boon, a call to action.
Here's how I did it:
Instead of wallowing in pity for what might have been, and watching in envy as other breast cancer survivors without lymphedema show off lovely arms, I seek to discover how others might benefit from what I've learned.
Going from anger to action is not an overnight process.
I've learned forgiveness of surgeons who simply wanted to prolong my life for a while.
I've learned to be grateful to those cancer survivors courageous enough to undergo clinical studies to determine the best treatment for lymphedema.
I'm one of the beneficiaries of those studies.
How could I not pass on what I know?
No, I did not run down to my nearest Post Office and do damage.
I silently raged against the surgeon so eager to remove cancer from me and detect spread that he forgot I might survive longer than a year.
I'm certain my surgeon, a small-town doctor with no specialty in cancer surgery, meant no harm.
After all, he did take the Hippocratic Oath.
It's just that he failed to warn me that my arm might swell permanently from the assault to my lymph nodes.
He neglected to inform me how I could reduce my risk of developing lymphedema.
Just giving me a pamphlet or Internet link would have helped.
He probably concluded in 1996 that I would not live to see the year 2000, and therefore it mattered not if my arm ballooned up.
But here I am in 2010, still alive and kicking, with an arm permanently enlarged, wrapped in a daily compression sleeve not of my own choosing.
It's a fashion faux pas, especially when the thermometer soars.
After I received six weeks of treatment at the lymphedema therapist's office, I spent a year in self-massage, bandaging, special exercises and self-pity to keep the swelling under control.
None of these procedures allowed me to ditch my compression sleeve.
A daily, ugly reminder of my cancer, this sleeve became a bane.
Sometimes I wore short sleeves and imagined the curious public staring at my arm.
But I could never don sleeveless tops, as this would reveal the silicon band holding up my sleeve, a tell-tale sign screaming, "I'm different.
" And when Michelle Obama showed off her beautiful arms in sleeveless dresses, I felt my anger rise again toward the inequity of it all.
But finally I turned my bane into a boon, a call to action.
Here's how I did it:
- I joined the American Cancer Society's Reach to Recovery volunteer program to assist other survivors in dealing not only with cancer, but with lymphedema concerns.
The ACS will pair up patients with similar issues, so when a lymphedema patient asks for help, the ACS seeks me as a perfect match. - When newly diagnosed breast cancer patients are referred to me, I make sure they know to take precautions to reduce the risk of developing lymphedema.
- I post on my blog about lymphedema developments.
- My lymphedema experience is captured in two chapters of my memoir on breast cancer, a way to tell others they are not alone in their struggles.
- I applied to the National Lymphedema Network to become a patient-advocate for their cause.
In that role I'm allowed to attend their biannual therapist-only meetings to learn the latest developments in this field.
Upon my return I share what I learned with my local community of doctors. - I've written my Senators and Congressmen to urge them to support a bill now in the House of Representatives that would help Medicare patients afford essential items key to daily management of lymphedema.
Instead of wallowing in pity for what might have been, and watching in envy as other breast cancer survivors without lymphedema show off lovely arms, I seek to discover how others might benefit from what I've learned.
Going from anger to action is not an overnight process.
I've learned forgiveness of surgeons who simply wanted to prolong my life for a while.
I've learned to be grateful to those cancer survivors courageous enough to undergo clinical studies to determine the best treatment for lymphedema.
I'm one of the beneficiaries of those studies.
How could I not pass on what I know?
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