Since it is the holiday season, that may mean hauling gifts, moving Christmas trees, lifting heavy boxes, shoveling snow and perhaps flying to visit family. Which makes it a great time to talk about Lymphedema!! You do not want this to happen to you:
Lymphedema is like strapping a brand new puppy to your arm 24 hours per day. It constantly demands attention. Never is there a moment when you do anything from walking to heavy work, that you aren’t thinking about your arm and Lymphedema. I hear this from people who see my compression garment and ask me, “What did you do to your arm?” My response: “I have Lymphedema from breast cancer.” Sometimes, I get tired of dealing with the questions and explaining so I have used these responses: “Shark Bite” “Bar Fight” “Snowboarding” “Alligator wrestling” and “Parachute got tangled”. I do that because when I tell them the whole breast cancer connection, 9 times out of 10 I hear this response: “Well, it’s better than the alternative.” But people respond the way they do because they have no idea about what it is like to live with Lymphedema. And if you are a new breast cancer patient and haven’t been warned about the ins and outs of Lymphedema, you do not understand either.
Recently, I got an email from Jan, who had completed “Red Devil” Chemo and was in the middle of Taxol. She had some questions for me. One was her arm was bothering her. After we wrote back and forth, she told me she had 18 lymph nodes removed during a Mastectomy. I told her that her arm symptoms definitely sounded like Lymphedema warnings and that she should get to a certified Lymphedema therapist immediately. Jan wrote me back just a tad perplexed. Not one person – her breast surgeon, her Oncologist, her family doctor – NO ONE had told her she was at great risk for Lymphedema. My telling her was a total and complete surprise to her. She was horrified to know that her medical providers neglected to tell her this extremely important fact!! Jan lives in a rather large city in California. This should NOT be happening!
Jan is not the first person I’ve heard from that has never been warned about Lymphedema. It still shocks me! Since I have to live with the challenges of Lymphedema every day of my life, it is so frustrating to me that women are not warned about this great malady while going through breast cancer treatment!
Brenda from North Carolina and I became acquainted after she wrote me to tell me she was the fashion diva of the chemo ward when she bought hats my online store, Hello Courage (www.hellocourage.com) Brenda has a great sense of humor and always makes me laugh. Brenda has been hit hard by a major Lymphedema onset shortly after her Mastectomy and lymph node dissection which happened after chemotherapy. These are Brenda’s words about her emotions as she deals with Lymphedema. Brenda has had such a flare up, she has to use a Flexitouch pump. With Brenda’s great sense of humor, she has had plenty to say about this huge contraption. But here Brenda speaks from her heart and tells us her emotions when dealing with the daily challenges of Lymphedema:
“Lymphedema is a real hit to the emotional equilibrium. I knew very well, especially after reading your blog, that I was almost guaranteed to have issues, but somehow the reality was nothing even CLOSE to the abstract. The idea of having to wear a glove and sleeve just doesn’t seem that bad… until it’s OMG, MY ARM IS HUGE AND THIS HURTS AND WHY WON’T IT RESPOND TO WHAT WE’RE DOING? And then you look at the pictures of limbs that have gone rogue and just won’t be tamed, and you panic, thinking “Is this going to happen to me? What then?” Suddenly the LympheDivas sleeves don’t look so cute, and Lymphedema gets serious in a big hurry!
I think the timing is part of the whole emotional aspect of Lymphedema as well. It seems to fall under the “last straw” category, after you’ve already fought through everything else in breast cancer and are, quite frankly, worn down and hanging on by fingernails. I’m pretty good at putting on the happy face and plodding forward, but when you’re still weak from Chemo, having ungodly nerve pain after the mastectomy, dealing with seromas, and cording, and radiation burns, it’s just the cherry on top of the big ol’ crap sundae! And while you got through chemo, and healed from surgery, finally, and your skin grew back after radiation, are dealing with the side effects of Aromatase Inhibitor drugs, the harsh reality that Lymphedema is forever washes over you. It’s just too much!”
Amen, Brenda. Well said! So PLEASE ladies, if you have had one or more lymph nodes removed, make sure you make an appointment with a trained Lymphedema specialist or get to a Lymphedema class. You can find a therapist or a class at larger cancer centers or a larger hospital. The reason it is necessary for you to do this is to find ways to PREVENT Lymphedema from occurring. Many of us couldn’t have stopped it from happening. But many of us CAN! Please take this warning seriously. Many surgeons and oncologists tell their patients, “Oh you only had 2 nodes out, you are not at risk.” That is WRONG information.
I’ve written much about Lymphedema in the past which was what Brenda was referring to — giving many facts, what to avoid doing, warning signals, what you need to do if you have had ANY lymph nodes removed. Please read them again! It may save you from the realities that Brenda and I both deal with on a daily basis.
ALSO, please be sure to read the Comments left by other women below! Very helpful information!!
Brenda was the fashion diva at her hospital thanks to hats from http://www.hellocourage.com — big hat sale going on plus Discount Code — check them out and also my wicking sleepwear that helps you sleep while dealing with hot flashes! THANKS SO MUCH FOR YOUR CONTINUED SUPPORT!