The gift that keeps on giving
Posted: December 5, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, HOPE Lymphedema Treatment Center, K9 training, lymphedema, postaday2011, psychological effects of breast cancer 16 CommentsI’ve been remiss in blogging the last few days. I could be a big baby and say I haven’t been feeling so great, but I won’t. Even if it’s true. Cancer. It’s always cancer. Seems that nary a day goes by without someone I know or a friend of a friend being newly diagnosed. It would be easy to get bogged down in all things cancer, but I won’t.
Something bad happened last week. Not “recurrence” bad, but side-effect bad. Something I’ve been scared shitless of since learning that this foul thing even exists. Until last week, said foul thing had not gotten ahold of me, but then on Wednesday last, everything changed.
Lymphedema.
The dreaded swelling of a limb following surgery, particularly surgery in which lymph nodes are removed.
Since my mastectomy 18 months ago, I’ve been on guard against the dreaded lymphedema. I have a fantastic lymphedema specialist, Tammy, who has become not only a vital member of my health-care team but also a great friend. Visiting her is like a trip to the spa — serene setting, trickling water fountains, dim lights, soothing music, and lovely & caring women. It’s a safe haven among the shitstorm that is breast cancer.
I started seeing Tammy as a preventative measure all those many months ago, and while I never had lymphedema, she worked her magic on my scar tissue and rough spots after my surgeries. With her help, and that of office manager and “salt police” Janice, I’d educated myself about lymphedema and had, until now, been successful in preventing it.
All that came to a screeching halt Wednesday. The proper care, the education, the prevention, the vigilance — gone. Just gone. My left arm swelled up like a balloon and felt heavy, tingly, tender, and sore. I was scared.
The thing that scares me so much about lymphedema is that it can come out of nowhere, months or years after surgery. And it can be permanent. The last thing I want after being handed a cancer diagnosis at age 40 is to go through the rest of my life with a balloon arm. That would put a serious crimp in my tennis game.
Luckily, Tammy and her staff of lymphedema slayers were on the ball and treatment commenced right away. I got to experience the joys of “the pump,” in which the offending limb is encased in a stockingette, then stuffed into a huge, padded wrist-to-shoulder sleeve reminiscent of the padding used to train police dogs, then encased in a plastic-y sleeve attached by thick cables to a machine that squeezes the limb rhythmically. The idea is to squeeze the excess fluid out of the limb and guide it back through the battered lymph system to then be filtered out of the body and released into the atmosphere, hopefully never to be seen again.
The plan was to rest (egads), avoid lifting anything with my left arm (bye-bye strength training), and wear the compression sleeve (oh so fashionable, and yet another palpable signal to the world that there’s something wrong with me). Pump it every day, drink as much water as I can hold and then some more, and hope it goes away. After laying low, being a gimp, wearing the sleeve, pumping and adding some k-tape, and drowning my innards 5 days, there is some progress. The swelling is down, but not totally gone. I want it gone. IMHO, 5 days is more than enough time for it to be gone.
Y’all know how much I loooooove being a patient, enduring complications, and being sidelined.
Not.
This latest complication and sidelining was rather tough. Mentally more than physically, which is a change. I guess it’s good to shake things up every now and again. The getting back to “normal” was getting kinda boring, and the idea of finally putting this cancer experience behind me probably was a pretty stupid one. Why not insert a wrench into the plan?
There are lots of things that aggravate the hell out of me with lymphedema. Lots of things. First and foremost is how rudely it interrupted my foray back into my “normal” life after the latest surgical procedure. I’m a busy girl and an impatient girl, so the “stop-start-stop-start” nature of getting back to “normal” after cancer and in between the 8 procedures I’ve had is trying. Just as I was getting back to “normal” after the October revision and hitting it hard at the gym, the balloon arm strikes. In fact, one of my fellow gym rats was just telling me, the day before the lymphedema arrived, that it looked like I was back. As in, back to my usual workout routine and getting stronger. Two weeks in a row, I’d had 3 hard workouts in a row. I was actually starting to see some progress, and with no more procedures on the horizon, my future in the gym seemed quite bright.
I should have known it was just a tease and wouldn’t last. I should have realized that cancer and its many ugly aftereffects will always have a hold on me and will get the better of me. I should have recognized that no matter how hard I work and how many things I do right, my arch nemesis will forever be skulking around in the shadows, waiting for the perfect time to shit all over me once again.
The Pink Underbelly 
You just can’t catch a break, can you? I know that you hate being sidelined, but I also know that you’ll kick lymphedema to the curb just like you did with your cancer. Hang tough.
dear Nancy,you do know that there is no normal. And your life will never be the normal that it was before cancer. But you will gain a normal that may be better in a different way. But give yourself a break. It will take time. I know you are not a patient woman,to say the least. Don’t drive yourself and your body so hard. But so you know this comes from the woman who is still trying to find her old life, her real life, for the past 10 years. So maybe I don’ t know what I’m talking about. But this I do know that less than 2 years after being diagnosed and going through all you’ve gone through is not a long time. Maybe a little smelling of the roses and less a little less of the gym,just for a little while. Now go have a medicinal margarita and forget what the old lady is spouting. love you and your spirit. Bettyanne
I know you’re sick and tired of being sick and tired, but you’ll get through this one too. As my mother always says when she’s had a setback, “This too shall pass!” You are surrounded by family and friends who love you and are praying for you.
Witty comment! Soothing platitude. encouraging statement. Concluding pun!
That’s the formula, but I’ve got nothing. I guess the takeaway from this is the old live for today message. Cancer has shattered the illusion of continuity. Everything good and bad is possible each and every day so try to recalibrate your sights and have a good day.
Sending hugs…
SH** !!!!!!!!!!!!!!!!
Lymphodema scares me. It is so random. And you were even seeing a specialist to help prevent it. This is SO not fair, but nothing about the Big C is. Sigh. (Big sigh.)
I’m so sorry to hear you have to deal with this too. I am hearing Gilda’s voice in my ear: “It’s always somethin’.” Ain’t it the truth.
{{{cyber hugs}}}
Renn
Nancy, lymphedema is one of those nagging, out-there things that can be an aftermath to cancer. I couldn’t believe it when I was diagnosed with it, way back in 1997. The ugly compression garment, the nightly bandaging, the dreaded exercises, home massages and stretches, the cleaning of the bandages and sleeves, the stares, the worry about the swelling and pain, the jealousy of “normal” people, the anger at the doctors and everyone else. It didn’t let up for a long time. And once in a while all those emotions flare up again, just as my lymphedema flares up from time to time. Wish you didn’t have to go through that. I pray it gets totally under control and is resolved with no further incidences of swelling.
XOXO,
Jan
You played some great tennis with that thing!!!
Lots of caring comments to today’s post. Cancer is certainly kicking tail everywhere you look, which is why I love Christy’s comment. How bad-ass is being a cancer chick who plays a mean game of tennis while sporting her newly acquired lymphadema garment? Pretty bad-ass, I say. And to draw on “Uncle Lester’s” pep talk star quote….”Wounds heal and chicks dig scars!” If that’s true, I’m guessing there is a rainbow sticker and some jealous looking ladies hovering around your Fiat right about now…..
Have I read that tennis and fly fishing are ‘good’ work outs for dealing with lymphedema?
I’ve not looked for the scientific evidence, but here is a blog along those lines.
Duhhhh, the link
http://ellekelly.wordpress.com/2011/05/01/sacked-the-aftermath/
Thank you so much!! I need to spend some time reading this blog. If she says tennis is good for lymphedema, it’s good enough for me!
I hope this was just a rare flare up for you! And you are still playing tennis while wearing the sleeve?!! Thank You for so giving hope to other BC survivors who had lymph nodes removed. (Though golf is my game.)
I’ve just been diagnosed with “mild truncal lymphedema” which is on my side beneath affected arm pit and under my breast, which comes and goes and puts intense pressure under breast/implant. Wearing a compression cami (actually a shaper) with a “swell spot” thingy that tucks under armpit. Have long since met insurance out-of-pockets & deductibles, so lymphedema therapists ordered me everyting possible before end of year. So I will be “armed” with the compression sleeve and ready for the flight I take next month. Lymph Rep told me to wear new arm sleeve for half a day and let him know how it “feels” before he ordered another custom made one. I told him it made me feel bitchy … and that was without lymphedema in my arm. Have been through $25,000 worth of physical therapy over the past five months (fortunately paid for by insurance). This lymphedema is serious shit — most people think that when you’re done with chemo and radiation then you’re done with cancer. In fact, most people have never heard of lymphedema — unless they get BC.
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This is spooky – I have also been floored this week with dreadful pain, and the doc says that it is partly due to lymphodema. It is so painful and wearing, and I am so so rry to hear that it has got you too.
Hugs, very very gentle ones
Philippa
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