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May 16, 2006 07:07AM
samon and ddd,
I truly do understand your frustrations with this. But LE is not cancer -- no contest there. Doing all we can to destroy the bc beast is the first order of business, and it's also a statement of triumph over those bouts of despair we all face as we go through this. DO get the best treatment you can for the bc -- that's today's problem.
As for the possible tomorrows, you are smart to be aware of the possibility of LE, but the thing you need to keep in mind is that there is treatment available if it develops, and with proper care the risks and inconveniences of LE can be reduced to nearly normal. ddd, since you are active and use your arms a lot, it would be worth the effort to see a well-qualified LE therapist for base-line arm measurements and for instruction in self care. She can also fit you for garments to use as a prevention when you're going to be active and stressing your arms. All these things help and can give you the peace of mind you need to get on with life as fully and richly as you did before. A therapist can also help you differentiate between the swelling and tingling of arthritis and that of LE. An experienced therapist knows how to feel the lymph fluid under the skin and may even be able to teach you to do so as well. Here's a web site that links to lists of qualified therapists (there is no standard of therapist education mandated by law as yet, so you want to make sure the one you see is well-qualified. For details about that, see the article called "LANA is Important" at www.lymphnotes.com
or the National Lymphedema Network's Position Paper on Therapist Training at www.lymphnet.org
). Anyhow, here's the qualified therapist list:www.mylymphedema.com
samon, I know the feeling of now having to view a paper cut as a major life event. Some of us keep a tube of antibiotic with us so we can wash and treat any skin breaks. Yes, it's an added nuisance, but it can prevent and infection that could lead to trouble, and it can give you a measure of control you don't have otherwise.
Like everyone else (family, friends, the medical folks), we too would like the bc journey to be just a dim memory, but in many ways it never will be, LE or not, as so many of our sisters on the Moving Beyond board prove every day. The bc diagnosis might have been a disaster, but prevention of further problems is just smart, on-top-of-it thinking.
If either of you need help with the nuts and bolts of getting bp on a leg, blood tests in your foot, or avoiding IVs when you're doing "procedures," there are lots of posts on here about these things, or just ask and many others will no doubt share their experiences. Unfortunately, like everyone else, we lost some valuable threads in the web site "black-out", but we're all still around here to answer any questions you have.
Wishing you a sense of returning power and control as you tackle life after bc. This part is doable, I promise!