A Guerilla Manual to Lymphedema

Hello.  For those familiar with this site, you know we try to keep it light and airy…most of the time.  Well…not today.  If you’re 100% certain that you and none of your family or friends will ever have to deal with cancer, skip this article and bless your heart for you are the lucky ones.  The truth is:  If I were a doctor, informing you about your cancer, I’d probably skip this topic as well, lest you consider taking a long walk off a short pier.  Unfortunately, this is not a “fun” article.  There’s no way to make it so, but if you ever contract cancer, it can be a life-saver.

The word of the year is Lymphedema and I spoke to some of you about a year ago on this topic.  A lot has happened in a year and having gone through it…we can help.  If not yourself, you may be able to help a loved one.

For those who don’t know the word, lymphedema is what you get after they’ve treated your cancer.  In most cases, in order to save your life from the cancer, a certain number of lymph nodes have to be removed, lest the cancer spread.  What they don’t mention at the time is how hugely important those little lymph nodes are.  They regulate a huge system of lymphatic fluid beneath your skin and when the nodes are removed the fluid collects in your body and tends to stay there.  To be blunt, it ain’t pretty, and you have to fight to manually move the fluid where it’s supposed to go.  Sounds easy and it isn’t.

First question you need to have answered:  How long does this last?  How long do I have to do this?  The truth?  For the rest of your life.

Second Question:  Is lymphedema lethal?  Nope.  But I don’t think a single lymphedema sufferer will disagree that they haven’t “considered their options” at one time or another.

 Do Men get it?  Yup, and little kids and teen-aged girls.  Everybody, anybody.

The hard facts:  Right now as of April 2017, the deck is stacked against all lymphedema sufferers.  The first thing you learn is 99% of the doctors you will meet have, at best, a vague passing concept of lymphedema. 

Hard fact number two:  Most of the lymphedema therapists have only a rudimentary idea of how to move that lymph fluid where it’s supposed to go.  Let’s get these hard facts out of the way quickly…

Hard fact number three:  The industry set up to “help” lymphedema patients is archaic, not state-of-the-art, and it would seem, very, very profit-conscious.  Here are some examples.  Pam has special lymphedema stockings.  They look like regular black stockings, only much tougher.  Cost for a pair of stockings?  Hold onto your hats.  $700.00 and guess what.  The insurance companies do NOT pay a penny toward them.  In one year, figure on going through 4- 5 sets of stockings ($3500 out of your pocket).  Oh, and do they work very well?  No, they do not, and as we speak we are working on a solution to this.  More about that later.

Sooo, all I need are stockings?  Depends on your lymphedema.  You can get it in your arms, face, testicles, abdomen, so the needs are complex.  If, you get it in your legs, which is very common, you will also need what is known as toe caps, skimpy little nylon “undies” for your toes that look like they should cost $2.95 at CVS  for a pair.  Prepare for the “burn”.  Those little caps cost $88.00…a piece.  Need them customized a bit?  Figure on $190.00…a piece.

 

Pamela has a blue rip-stop Nylon compression suit she puts on with a tiny compressor that quietly pumps them up.  Cost?  You might want to sit down.  $15,000.00 and no that’s not a typo.  So….what conclusions can you draw on the finances of this affliction?  Someone needs to open up shop to handle the ten million plus sufferers in America.  World-wide, it’s over 100,000,000.

Before you quit reading and look for a gun, there is some good news.  Those of you who know Pamela and me also know that we are not ones to walk the plank quietly.  We are both fighters and there are solutions.

Point One:  I’m being charitable in guessing that 80% of the caregivers have little idea what they’re doing.  We have, as yet, not found one therapist who knew as much as we’ve learned being “in the trenches” for a year.  A sufferer really, really, really needs a caregiver.  To have a therapist drive out and give you a half-hour wrap of your multitudinous bandages, costs $100-plus a session and figure on 3-5 sessions a week.  Better solution?  Have someone who’s really dedicated to you for the long haul.

The very sequence and manner in which these super versions of Ace bandages are applied is absolutely critical.  Do the sequence wrong and you exacerbate the problem…quickly.  Do it just a little bit wrong and you essentially do nothing…  There’s a specific way to do it and I have a simple metaphor which works even when you get to the nuances.  Think of your afflicted leg or arm as a tube of toothpaste.  Your goal is to get that toothpaste (the lymphatic fluid beneath your skin) back up to your abdomen.  Sound easy?  It isn’t.  The concept works in wrapping and it works equally well with a massage.

First rule: and this is hardly ever mentioned.  Elevate your leg.  They make foam pillows that resemble triangles of cheese.  They’re cheap, and they work.  Tip: put an extra sleeping-type pillow on top of the “cheese” for a bit more elevation.  Almost immediately the lymph is drifting more in the correct direction.  Then, begin moving that “toothpaste” out of the foot and into the calf.  You’ll see some You Tube videos with gals rubbing in little circles all over the leg.  Keep the image of the toothpaste in mind and imagine where it’s going.  Swirls are less than half as efficient as progressive squeezing.  This is the voice of experience.  Make sure that every move you make in a massage, every bandage you wrap, is with the thought of moving the fluid out of your feet and up the leg toward your torso (where it is processed).

What should be an obvious tip:  Do not begin your bandaging on the calf or on the thigh, to do so, cuts off the flow and actually sends the lymph the wrong way.

Tip: Your hands are gently strangling the fluid up out of the feet, the calves, the thighs, higher and higher.  If you are familiar with the term, peristalsis, (the muscles in your esophagus working sequentially to send food down to your stomach) your squeezing should resemble peristalsis.

Subtle Tip:  Squeezing can and should be intermixed with a maneuver that possibly doesn’t have a name.  Think of putting your fingers on your thigh to scratch it.  But instead of scratching with the edges of the nails, go in the other direction.  Let’s call it back-ward scratching.  It works and it feels great on the patient.

Technical stuff:  The most complicated wrap by far is the wrapping of the foot, and in particular, the ankle.  It requires forethought, and practice to get it perfect.  The lymph fluid loves to pool on top of your foot as well as around your Achille’s tendon on the back.  That’s the bugger and that is something we and some other individuals have a simple (cheap) solution to.  We’re getting the bugs worked out as we speak.

Some Important Tips and Things to Remember:

Right now, if you go on-line to a lymphedema “store,” you will find myriad devices which work to some extent…BUT, they have their pros and cons.

Velcro Wraps:  Boy, does that sound like a great idea or what?  They look efficient and they are efficient, but there are two things that are never mentioned:  We’re all familiar with pulling a Velcro strap to tighten a sneaker.  Pulling a large Velcro strap around your ankle, calf, or thigh, is an order of magnitude harder.  If you’re a woman, I would say you have to be in superb condition, work-out and be something of a contortionist.  Otherwise, you need a second person…and that’s key.  Do you reliably have a second person to help you?  Second fact of life with Velcro:  With the forces you’re exerting on those thousands of tiny Nylon hooks that comprise Velcro, they distort or wear out very quickly.  A couple of weeks or a month from now, you find that the Velcro gives way and can’t be made to stay.

Is there a solution?  Yup, we’re working on that, too.  ( For long-time readers, I alluded to this months ago, but a replaced right hip for Pam set the calendar back on the project. ) The solution is elegantly simple and an easy secondary goal was (is) to make the thing pretty.  That’s one of the hidden realities of lymphedema.  It can encroach on your very concept of who you are.  Depression is always a quiet, invisible concern………and we’re working on it!

Lastly, and this is long-term, we have on the drawing boards a light-weight device…not expensive, that will replace those $15,000.00 compression boots. (Pam calls them her Moon Boots.)  This concept is definitely state-of-the-art.  The technology already exists and is available…and because this is such a small “niche market,” only 10,000,000 Americans afflicted, that no large companies want to bother.

There is nothing so compelling as wanting to help your spouse.  That’s our impetus.

Sorry this had to be long, a bit scary, and a bit depressing, but not all articles can be fluffy.  Pam and I and a couple of others are in the trenches.  Lymphedema can be a much smaller affliction than it is now.  It’s doable.  Right now, we need a little luck and fairly soon, a rather small amount of funding.  We’re novices with regard to Kick Starter…but that’s today.

I hope no one reading this has lymphedema.  But if you have a loved one who does, or who is facing cancer, pin this article away for future reference.

Henry

P.S.  Those $700 stockings?  There’s one serious glaring flaw in them that the company has overlooked.  And once again, this actually is not rocket-science technology.  There is a solution.  It’s doable and I guarantee you it won’t set anyone back even a fifth of that amount.  Once again, we need a little luck…and maybe a little support.