The Thrill is Gone – Journey With Lymphedema Continues

Lymphedema Journey With Lesley Ronson-BrownBy Lesley Ronson Brown, 500 Hour Yoga Teacher

As my journey with lymphedema continues, I find I am tiring of it. It is no longer something new or something to get used to. The thrill is gone. Not that it was ever too thrilling, mind you; but it was interesting to learn about and begin to navigate my way through the lymphedema maze. I think, however, I had an underlying hope that if I did everything I was supposed to, that somehow it would go away or lessen substantially. But it hasn’t. It hasn’t gotten too much worse, but some days my arm is definitely bigger and some days a bit smaller. But it seems to be bigger more often than smaller. I feel resigned. This is one long-term relationship I would rather do without.

So what’s a girl to do? Sometimes when I’m stuck and not in the flow (get the lymphedema pun?!), I pretend I am a friend advising someone who is stuck in the same situation. I would tell myself it’s time to set up a counseling/action plan. First, I need to listen to myself and acknowledge my true feelings of frustration, dismay and sadness. Acknowledge that I am in the doldrums, as if on a plateau, a lonely plateau. And then figure a way out of it. Like an explorer lost in a jungle. Time to send out an SOS. And guess who I want to come to my rescue?!

Prince Charming! Yes, sad to say, that fantasy is still a real one. I want my prince to come. But he doesn’t have to take me away. I just want him to make my doctor and physical therapy and lymphatic drainage massage appointments. I admit, I want him to massage my arm, too. And OK, OK, I want him to magically charm my arm into being its regular size again.

But this ain’t no fairy tale. And the only one who can “charm the arm” is me. But I don’t wanna!!!!!! I want to pout, put my hands on my hip, say “agghhh” while moving my heavy-metal-concert be-boppin’ head, but with more speed and more jerkiness. Attracting Prince Charming while doing so, of course.

Just the thought of doing that, though, makes me laugh because it’s not quite my style. But sometimes it’s helpful to get out of your style. It can jumpstart you onto a different path. Hopefully, a better path. Realistically, I know spending more time on my yoga mat as a student, not a teacher, will help me. Just by doing yoga, the frustration fluctuations will begin to lessen, becoming less extreme. Practicing more pranayama, or breathwork, will begin to quieten my ego and move me towards accepting what is. My action plan could involve more volunteer work as that is always a good way to move my ego away from its focus on me, me, me, me, me. I will devote more time to massaging my arm myself. Maybe I can charm it a bit. Or at least find it more charming and lovable as it is.

Even though I will do all that, I have a confession. It is kind of fun to rant and rave. It’s fun to sometimes flail about. Especially for those of us who are usually the nice ones, the happy, positive ones who can handle everything with what looks like ease and even luck. It feels cool to morph from Ms. Perky to Ms. Jerky, and watch people’s reactions when we bust out. It is powerful! I strongly suggest it for all you nice girls out there. It’s a definite scene stealer and a good strategy to get your way because people are stunned into shock. Trust me, they don’t like it when Ms. Nice Girl Perky starts changing. But, unlike our human companions, lymphedema doesn’t care. It isn’t going to budge, no matter how much I stomp or how many deals I try to make with it.

So, since Prince Charming hasn’t shown up yet to take care of my arm, and that arm isn’t going to budge by itself, no matter how I act; I guess it’s time to put on my big girl panties, stomp into my thigh high boots, wriggle into my hoop skirt with the “smart ass white bitch” patch embroidered on it and sashay up some action. Oh, yeah!…now that’s a great visual, isn’t it?

Lesley BrownLesley Ronson Brown is a two-time breast cancer survivor and a three-time lymph node cancer survivor.  She has had lymphedema since 2011 and has learned how to manage it through traditional and complementary therapies.  Lesley is a certified Yoga teacher, with a specialty certification in Restorative Yoga, and has taught for more than 15 years.  She also is certified in Pilates and Group Fitness Exercise. But her favorite thing to teach is yoga!  She currently is completing her 500-hour yoga teacher training and is writing a thesis on Yoga and Lymphedema.

Topsy Turvy Travels – Lymphedema Journey

Lyphedema  ManagementTOPSY TURVY  TRAVELS by Lesley Ronson Brown: Yoga & Lymphedema Expert
September 2013

So what helps us through our lymphedema or cancer journey?  Whether our journey is dealing with lymphedema, chemo, radiation or some other treatment or test, we often travel through turbulent terrain.

The answer is different for each of us, depending on our personalities, needs, environments, etc.  But to safely traverse the minefields of cancer treatment and its side effects, which sometimes is lymphedema, we each need to figure that out.  Just like when we take a trip, it tends to go better if we have a plan.

If you aren’t the rustic type, you wouldn’t book yourself into a top of the Alps campground, sleeping perilously on a mountainside, next to a sheep that doesn’t even say “baa baa” in English.  No, you’d be at the Four Seasons or something as close to that as you could afford.  A charming B&B on a small Parisian street would be wonderful.  But if you are more outdoorsy, you might not be able to stand staying in more conventional lodging.Lymphedema Jpourney

So why don’t we take the same approach to traveling with cancer?  Traveling with lymphedema?  Why don’t we figure out what we need for a comfortable trip?

A big factor is that none of us really want to go on this journey.  We all find ourselves on this trip against our will.  We didn’t choose it.  We don’t want it.  But darn it, we got it.

So we can choose to pout or to put out.  Put out what we need to navigate this trip as comfortably as we can.  What do we do to move from merely surviving to thriving on this journey?  We do some soul searching, meditation, quiet thinking, maybe yoga, and then we bust out!!

Figure out what makes you tick and what you need.  You probably already know it. Look at how you like to spend your time.  Look at what brings joy to your heart.  Do it!  Look at what you can’t stand to do.  Don’t do that!

When I first got cancer, everyone wanted to drive me to chemo or sit with me while I was there.  But I really didn’t need or want that. If I had felt tired or poorly, I would have asked them for help with such things.  But I was able to drive myself and frankly, I liked having time by myself to read or to sleep.  So instead, I got them all to come over to my house and clean out my cabinets and closets!  That’s what I really needed.

But for many of us, it’s nice to have someone with us for chemo or a medical appointment.  They can get us water or coffee, or talk with us.  They can take notes for us when it’s hard to remember exactly what the doctor or nurse said. They can help us walk if we feel weak.  Ask for what you need, not what people think you need.Breast Cancer Lymphedema

When lymphedema started showing up, my friends encouraged me to delve into it to learn more. Because I like fashion and enjoy accessorizing just about everything, they accompanied me to find sleeves that were fun to wear, but also therapeutic, of course.  No one told me to just suck it up,
or be stuck with it in a way that would get me down.

When I first got cancer in 2006, a friend gave me a little ceramic plaque that said, “Put on a little lipstick, you’ll be fine.”  So I did.  And I was fine… most of the time. Now, we all know the lipstick didn’t actually make me better, but it made me feel better and look better. And that is what made me better.  It gave me hope.  It made me buck up when I didn’t feel like bucking up.  And lipstick does that.  So does eye liner and blush.  Do you know who knew that and built his company on that philosophy?  Charles Revson, the founder of Revlon.  Years ago, he told his employees that they didn’t sell lipstick.  They sold hope.

Even though the cancer has come back a time or two or three or four, in my mind, I am fine.  Not cured.  Not healed.  But fine. I put on my lipstick and am fortunate to be able to manage my various diseases with grace.  Like anything, that takes effort and determination.  I have chosen to use my energy to make my journey more comfortable.  You can, too.

Lesley BrownLesley Ronson Brown is a two-time breast cancer survivor and a three-time lymph node cancer survivor.  She has hadlymphedema since 2011 and has learned how to manage it through traditional and complementary therapies.  Lesley is a certified Yoga teacher, with a specialty certification in Restorative Yoga, and has taught for more than 15 years.  She also is certified in Pilates and Group Fitness Exercise. But her favorite thing to teach is yoga!  She currently is completing her 500-hour yoga teacher training and is writing a thesis on Yoga and Lymphedema.

Breast Cancer Lymphedema Etiquette

Lymphedema Etiquette

Etiquette Schmetiquette…or “So What’s Up with Your Arm?”

Lesley Ronson Brown – Certified Yoga Teacher.

One day I was walking though our local city hall and I heard a voice behind me shouting, “Oh!  Breast Cancer, huh?!”  The shouter loped up beside me, pointed at my compression sleeve-clad arm and loudly jabbered away about breast cancer.  I was speechless and could only stare at her as I kept walking.  Faster and faster.  I felt invaded, stunned, violated and angry. While I am very open and happy to talk about my breast cancer and lymphedema experience, I prefer to do it on my own terms.  In a more select venue.  Without shouting.  Like on a blog.

People still ask about my sleeved arm, but usually in a quieter manner. It is similar to being pregnant when everyone has to make a comment or ask a question.  When are you due?  Is it your first one?  How’s that morning sickness?  While this can feel intrusive and sometimes annoying, at least it is about what is usually a joyful event.  And no one has to point and ask, “What happened to your belly?”  I think they know.

So how do we answer these questions?  I won’t even type what I often think to say!  Though I will share my favorite comeback with you:   “I bitch slapped someone.”
The poor man who asked about my arm looked so horrified that I felt badly.  But it did shut him up.  He asked me no more questions.  He backed away from me.  I felt a surge of empowerment, which was nice, because dealing with major illnesses can make us feel powerless or resigned.

Like anything that hurts, time can be a great healer.  Getting used to wearing our compression sleeves or bandages is a big help in how we present ourselves to others. I felt awkward and self-conscious when I first began wearing my sleeve which contributed to the distress I felt from the city hall shouter.  Today I might have put my hand on her arm to quell her comments and said, “I beg your pardon?” with a Maggie Smith-look that would let her know that no more comments are welcome.  Now I usually say,  “I had surgery which caused my arm to swell and this compresses it to keep the swelling down.”  I find this simple answer works best.  People don’t usually ask what type of surgery it was.  And their look of curiosity and concern lessens even more when I add, “But it doesn’t hurt!”  They actually seem relieved.

I like to wear colorful sleeves, often with patterns, that I use like fashion accessories.  When I do this, I move with more joy and lightheartedness which keeps people focused on me vs. just my arm.  People think I am very hip and have a full arm tattoo!  In fact, I get more questions about my arm when I wear the plain beige ones, since they look more bandage-like. I still wear the plain ones, too; it depends on my outfit. Like all fashion, it is the solid dark black sleeve or smaller prints that make my arm look the slimmest.  The larger prints can be quite fun, but not so slimming. If you don’t have access to try on different sleeves, try on a pair of solid dark pants in a retail store and then a pair with a large red hibiscus on your rear end.  You’ll see what I’m talking about!  But a slim looking arm is not the most important thing.  Wear what you feel best in and what will bring you good health.  That is what is important.
Lymphedema Yoga
Wearing fun sleeves helps, but it is yoga that helps me reach into myself and develop skills to handle things like this and other life situations.  How we handle dealing with cancer or lymphedema is how we handle everything in our lives.  If we look at things positively, yoga helps us maintain the equilibrium that comes with a positive outlook. If we look at things negatively, yoga can move us in a more positive direction. Yoga helps us feel connected, which helps us feel better about everything.  When we feel disconnected, we are not grounded and have nothing to hang onto. That does not feel good, so we act in ways that do not benefit us or the people around us.  Deep yoga breathing and asana can ground us and return us to a sense of calm and well being.  Do it!

About Lesley Ronson Brown is a two-time breast cancer survivor and a three-time lymph node cancer survivor.  She has had lymphedema since 2011 and has learned how to manage it through traditional and complementary therapies.  Lesley is a certified Yoga teacher, with a specialty certification in Restorative Yoga, and has taught for more than 15 years.  She also is certified in Pilates and Group Fitness Exercise.

Lymphedema – Risky Business

Angela Strynkowski, E-RYT 500 Founder of A Jewel In The Lotus

Angela Strynkowski, E-RYT 500 Founder of A Jewel In The Lotus

By Lesley Ronson Brown

Dealing with lymphedema is a risky business.  The best insurance you can get is to develop your own awareness and retrain yourself to do things differently. Avoid trauma! We cannot prevent lymphedema, but we can reduce our risk of getting it or worsening it.

The best advice I heard from a physical therapist is to:  “know your limb.”

Be aware of changes in your arm or leg and things that might irritate it.  We can train ourselves to move through life in ways that keep us safe.  It becomes an automatic response, just like looking both ways before crossing a street.

Put yourself on Safety Patrol with these ideas:

  • Avoid excessive heat like hot tubs and extremely hot yoga rooms.
  • On hot days, reschedule outdoor activities for a cooler day or break down the time spent in the heat into smaller increments.
  • Use bug spray and don’t scratch if you get a bite.  Keep anti-itch cream handy. You don’t want to leave any opening for infection on the affected limb.  Our immune system is weakened and there is a lot of bacteria in the swollen limb’s lymphatic vessels.
  • When gardening or hiking, wear long sleeves and gloves.
  • Avoid sunburn.  Use sunscreen.
  • Moisturize affected limb daily with fragrance-free lotion like Lubriderm or Eucerin, etc.  Fragrance is drying and can irritate the skin.
  • See a dermatologist for skin issues.  Common OTC remedies, such as wart removal medicine, could put you at risk.
  • Be selective about where you get manicures and pedicures. Do not let anyone cut your cuticles.  Request they gently push them back instead.  Look for safety first, not price or convenience.  You are worth it!
  • Lighten up your load.  Always keep elbows slightly bent when carrying something heavy, and use the unaffected arm as often as you can.  Divide contents between 2 bags or purses. I keep a “car purse” and a “port-a-purse”.  The car purse has things I might need, like eyeliner, concealer, blush, hand lotion, jelly bellies, etc.  The port-a-purse has essentials, like my wallet, phone, hand sanitizer, extra set of keys, and of course, my extensive collection of chocolate malted milk balls.  WARNING!  Do not leave those balls or any chocolate in the car purse in the summer months!!!  I don’t leave it in the car in Chicago winters, either.  Chocolate is best at room temperature
  • Open heavy doors wisely.  If you live in my home state of Louisiana,

this isn’t usually a problem, as a man will automatically do it for you.  For us lymphedemiacs who live north of the Mason-Dixon line like I do now, that rarely will happen.  So here’s how to handle the heavy door:  Don’t shove or kick it open with your affected limb.  Use the other limb or use both arms and hands.  And if you can, back into it, using your whole backside of the body with your full weight.  This is a good technique if you are carrying a bunch of stuff (but not too much stuff!)

  • Buy shredded cheese and pre-cut veggies when possible. Or get friends and family to help you. Reduce the amount of time you spend with a knife in your hand!
  • Avoid heavy housework such as vacuuming and scrubbing.  Trade off with friends and family.  Run their errands for them.
  • Keep pets’ claws trimmed.  Wear gloves and long, heavy fabric sleeves when appropriate, such as bath time, trimming nails, giving meds, etc.
  • Avoid underwire bras and bras or clothing that are too tight.
  • Avoid tight jewelry.  Wear your watch on the unaffected arm.
  • Avoid acupuncture on the affected area, but OK to do on other body parts.
  • Avoid hard pressure massage.  Use only a light touch, called a “skin stretch”.  If your massage therapist doesn’t know this, find one who does.  Best to allow only lymphatic drainage experts to touch your limb.  Remember, it is precious!
  • Have blood pressure and blood draws taken on the unaffected arm or leg.
  • Reduce your salt and fat intake as both can cause swelling, and fat deposits left in the space between tissues makes it difficult for fluid to pass through and into lymphatic vessels.

Finally, losing weight or maintaining it might not decrease swelling, but gaining weight CAN bring on episodes of swelling.  Now that’s just not fair, darn it!

Information, Please!

What is Lymphedema? 

By Lesley Ronson Brown, Registered Yoga Therapist

Breast Cancer Yoga Lymphedema

Good heavens! It’s hard to understand this disease called lymphedema that some of us get…and some of us don’t…as a side effect of cancer treatment when lymph nodes are removed followed by radiation. We might be given a pamphlet to read about it, but that is usually at a time when we are struggling with much confusion and fear.
So here is some info…the lymphatic system is part of our body’s waste management system and has two main jobs. It transports waste from cells that blood vessels don’t pick up and it acts as a defense system to protect us from infection. Blood transports nutrients to our cells and then transports waste away from the cells. Some of the waste products are too large for the blood vessels or are not the type of thing it wants to pick up. S

o, here comes the lymphatic system to the rescue! It’s similar to trash day. The regular garbage trucks pick up refuse in cans and recycling bins, but if you have an old BBQ grill or couch sitting on your curb, it won’t be picked up. So some other entity has to come along and get it. That’s what the lymphatic system does.
The lymph fluid moves inside vessels, similar to veins. These nodes are bean-shaped storage facilities where the lymph is examined; and valves which help move the fluid along. Lymph fluid contains waste, bacteria, proteins and sometimes something that seems potentially cancerous. The nodes break down these extraneous materials, and then transport the waste via the lymphatic vessels, eventually expelling them from the body in urine.

What helps the lymphatic fluid flow is the movement of our muscles against the vessels, and also very, very light massage. Unlike blood, there is no pumping mechanism like the heart to move it along. Physical movement and light pressure is required. The vessels are close to the skin, which is why after a massage, most people need to use the bathroom since their lymphatic flow has been helped along by light Swedish or specific lymphatic drainage massage. Deep or hard pressure tissue massage is not beneficial since it presses too hard on the vessels, similar to stepping on a garden hose. It might reduce or stop the flow, causing a backup. Not a good thing for those of us who have had more than 6 lymph nodes removed!

So who is at risk? Cancer survivors are at risk. If they had lymph node removal, lymph node damage or radiation; the standard protocol for anyone having a lumpectomy, are at risk for lymphedema. If you had only or up to 1-6 sentinel nodes removed, followed by radiation, your risk is fairly small. For those of us who have had more nodes removed, it is larger, but there is no way to tell exactly how large. What we don’t know is how many lymph nodes we actually have in our axilla (armpit) area. Most people have between 600-700 nodes throughout their bodies, but what isn’t known is the exact number in different locations. So if someone has 40 lymph nodes in the axilla and then removes 8 nodes, it might mean their chance of getting lymphedema is less than someone who has only 24 lymph nodes and had 18 removed. But we have no way of knowing…frustrating!

Once the nodes are removed, the lymphatic vessels are disconnected, for example if you cut a spaghetti noodle in half. So the fluid has lost its direct route. But it is smart! It begins to try and find a way around this traffic jam, just like we do when we are driving. It backs up and tries to flow towards another lymph vessel. Sometimes it finds its way, but the flow is slowed and gets stuck, which causes the swelling. Radiation is problematic because it leaves behind scar tissue. This scar tissue affects the lymph’s ability to flow smoothly, similar to a dam effect. Lymphedema can occur shortly after surgery and radiation or many years later.

So what can you do? Meet with a physical or occupational therapist that specializes in treating lymphedema after surgery and radiation. Do this as part of your Survivor Awareness Plan. While we cannot prevent lymphedema, we can reduce our risk by becoming educated and aware; and by exercising, so our muscles can help move our lymphatic fluid along. Yoga is great to do because it helps us move, and more importantly helps move lymph throughout the channels. Yoga also helps our minds stay sharply focused and calms our spirits.

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For More Lymphedema Information:

Suggested Lymphedema Videos For Lymphedema Prevention & Management!

“Let It Rise”

“Seaweed Arms”

T-Shirt Wisdom

By: Lesley Ronson Brown

So, one day about two years ago, I was shopping and tried on a new t-shirt and noticed the left sleeve seemed tighter than the right one.  And I thought, “How strange, this shirt isn’t made very well.” And that’s where my thinking stopped.  If I had let myself think it through and looked beyond the immediate situation, I might have thought, “Hmm….How strange, why isn’t this shirt fitting me correctly?  Is it just some weird sizing by the manufacturer?  Did I gain weight?”  And maybe, finally, “What’s up with my arm?”

Even though I’m a yoga teacher and very much in touch with my body, I am also a woman who never thought I could possibly get lymphedema.  But to put it more honestly, I’m a woman who didn’t want to think about getting lymphedema, the disease that compromises lymphatic fluid flow, and causes swelling.

Yes, I had 17 lymph nodes removed in one arm and 7 on the other. Yes, I’d been given the pamphlets about lymphedema.  Yes, I’d been told to wear an arm sleeve when I flew.  But lymphedema just wasn’t at the top of mind for me.  I wasn’t going to think about it!

So what did I do? At first, after the t-shirt alert, I did nothing. But soon I began to notice that on my left arm, the triceps seemed a little bigger than on my right one. I could see the difference when I was doing an overhead press with weights I thought it was because I had been a waitress and carried my tray with my left arm, which worked my biceps more, making my triceps weaker. This made sense to me, so I wasn’t alarmed. I tried to strengthen the triceps more, but it didn’t make a difference.

Then one day, something happened that did alarm me.  While attending a yoga conference, I had a Thai massage.  I knew it was different from a regular massage, but didn’t quite know how.  After the first few minutes, I found out.  The practitioner put her body weight on me, pressing down substantially.  When she bent my left elbow and pressed down, I felt a “pop!” on the inside of my lower left arm.  It hurt a bit, so I asked her to stop and just do my lower body.  I had her finish early.  I told her my arm felt strange, and had gotten hard, and she said that this popping or hardening situation had never happened with other clients and suggested I put ice on it.  I do not think she did anything wrong. There is nothing inherently wrong with Thai massage.  But it was wrong for me. Unfortunately, I had exposed my arm to trauma, one of the things we are warned about after lymph node surgery.

I visited my primary physician to get an x-ray, but she said not much would show up, because a bone wasn’t involved in the mild discomfort I was experiencing.  Neither she nor I were thinking lymphedema.  It wasn’t at the top of either of our minds. Keep it elevated, use more ice and come back if it got worse, she advised.

My arm remained slightly swollen and still hard, and one day, a friend who also had been on a breast cancer journey, asked if I thought I might have lymphedema.  I stared at her, horrified, and thought, “Blankety-blank, maybe I do have lymphedema.”  I went to a lymphedema physical therapist, who then confirmed that I indeed had lymphedema.  And she and I have become good friends over the past two years.

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