Sunday, February 14, 2010

Acute lymphedema. Bandaging. *sigh*

In the scheme of things, what's one more little bump in the road, right? I had my first PT session yesterday with a lymphedema specialist. Richelle is awesome - she really knows her stuff and is very kind and compassionate too. She is treating me at her home office so that I won't have to travel all the way down to Westwood several times per week which is where most of her patients go for treatment - this is saving me 25 miles in L.A. traffic (each way). She has a great setup in her home and I don't have to battle an overcrowded parking lot or parking garage like I do for all my other doctors and support group visits. Upon measurement and evaluation, Richelle seemed to think that my swelling may have started a long time ago but gone unnoticed because it's not severe and most people can't actually see it when they look at me - mainly because the worst part is in my upper arm and in my side where I'm usually covered up given it's winter time. Even when I took my shirt off for her to see more closely she said it wasn't very noticeable to the eye but when she measured my arms to compare them it was nearly an inch difference between them. Since my left arm is the affected arm and I'm right-handed, this difference is actually considerable. Usually the arm we use the most is bigger than the other - in my case my right arm is smaller than the left, in spite of being right-handed. My skin/tissue in the left arm is not "pitting" the way it would in the earliest stages of developing lymphedema and that's not a good thing because that indicates that it has been swollen long enough to make it less reversible. Richelle gave me a crash course on the lymphatic system. At times I wanted to stick my fingers in my ears and yell "lalalala" because even though I've been stuck, poked, prodded, and had my share of icky procedures I just was queasy at the thought of all that lymph fluid routing around, then becoming stagnant in my arm (putting me at risk for infection), and the occasional icky cancer related thought that creeped into mind while she described the placement, function and direction of lymph nodes, fluid, etc. So here's the program. For two weeks, beginning Tuesday, my left arm will be bandaged from just below my armpit dow to the knuckles on my hand, using compression bandaging. I will wear it 24/7 between physical therapy appointments at which Richelle will unbandage it, treat me with exercise and lymph drainage massage and then rebandage it. I'll see her three times per week, or more if needed, depending on the progress made. Progress will be evaluated by the measurement of my arm. Monday or Tuesday morning I need to discuss this with Dr.Z (radiation oncologist) and make sure that it's OK to have the bandage on during radiation treatments. I'm not at all excited about having it on, period - but especially not excited about having it on during radiation treatment since I have to lay with my arms over my head and stay perfectly still for about 12 minutes (5 min of position scanning, 7 min of radiation) which is challenging enough without some itchy stinky and stiff bandage on my arm. In addition to the two weeks of bandaging, I have a 10 minute exercise and massage routine I have to perform at home twice a day - forever. I'm choosing to view this part of the program as my forced meditation time which is good since I struggle to get that into my routine right now. I'll put a Bernie Siegel meditation on while I do the lymphedema routine which is pretty simple and take care of both things at once. Thank you, God, for helping me to see this swelling before anyone else could. Thank you, Lord, for helping me find Richelle and having her in my insurance in-network program so that I won't go broke getting treated. I'm grateful for the many miracles You perform in my life every single day. Love, Julie

6 comments:

  1. The lymphedema is a bummer but it sounds like you are handling it well. Thinking of you and sending best thoughts your way as always!

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  2. Hey Julie. I have been following your journey since before your son was born. I just wanted to tell you that I have decided to walk in the 3 Day this year. I live in Atlanta, so know you have supporters out on the east coast too. I am walking for my grandmother, a friend here, and also for you. Thank you for being so brave and for sharing your joruney with all of us!

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  3. I'm so sorry - one of my biggest worries is getting lymphodema. I only had three nodes removed so odds are with me but it's still one of those things I'd prefer not to deal with. But, knowing you are a strong woman I am positive you'll make the best of it.

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  4. Thank the lord for Richelle is right! I am so glad that he brought her into your life! And also thankful for her home office!!!
    Love ya

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  5. Hi Julie, sorry to hear about the lymphedema. One of my friends has it as well, and wear's her sleeve everyday. She got a black one, and people often compliment her on it (they think it is a fashion statement, they have no idea it is a lymphedema sleeve).

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  6. I don't know what to say but I am sorry that you have to go through this. It's just like adding insult to injury, but, as always, you find the silver lining and the light at the end of the tunnel. So I will simply send you a link to lymphedivas...an online store with some funky sleeves. Maybe you can find one to find the inner diva in you???

    http://store.lymphedivas.com/store/pc/home.asp

    xoxo, Paula

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