A Guerilla Manual to Lymphedema

Apologies… but it’s pictures like these that make me want to ask God, “What were you thinking?”

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.

Here is one of the brave young warriors in the fight against this terrible affliction.

 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…

Yup, these are the $700 stockings…….worn by a model sans lymphedema I might add. A rip…

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.

Yup, this is exactly what Pam’s compression suit looks like. $15,000.00


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.

Kathy Bates, the patron saint of Lymphedema. She’s a great actress, but she’s an even better humanitarian

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.

$750.00 for one leg…and guess what, your insurance doesn’t cover it. Covers for Viagra pills though.

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.

Pamela…in slightly happier days.


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.




24 Responses to "A Guerilla Manual to Lymphedema"

  1. Deborah Bellini says:

    First, I’m sorry that Pam ans so many others have to live with lymphdema and as you state, not much is known about it. Next, knowing both of you, before I got to that part in this blog, I immediately thought “Henry will think of a better mousetrap” Your love of your spouse and your incredible mind wouldn’t have it any other way. And lastly, it’s sort of a weird coincidence that I have been dwelling on the number of people that I personally know who are living with cancer and it’s complexities. Wondering if I too, or someone else that I love will be stricken with cancer. I have lost both parents to luekemia so it’s not out of the realm of possiblities. I do hope you can raise the funding needed. Is there anything I can do to help advocate?

    • Henry Harvey says:

      Hey Deb,
      Thank you for your kind words, and yes, these things happen to other people…until they don’t. Right now, I’m in the process of communicating with Kathy Bates at the LE&RN Foundation to see if we can coordinate. For the time being, please just cross your fingers for us.

  2. Henry Harvey says:

    My God, Henry, what an eye-opener. I’m glad Pam, with your unrelenting support, continues to keep on keepin’ on! Can’t wait to hear what’s brewing in those amazing brains of yours — it’s bound to be groundbreaking! Love you both! XOXO
    Lynn Martinez

  3. Henry Harvey says:

    Hi Lynn!
    Good to hear! Right now, we’re communicating with Kathy Bates, who’s heading up the LE&RN foundation. (not a typo) to help with this affliction. Fingers crossed.

  4. Henry Harvey says:

    I can’t begin to imagine going through this suffering. You could never do it alone. Thank God Pamela has you and prayers that some how there are more answers for this horrible side effect of removal of lymph nodes. I hate cancer.
    Linda Schuyler

  5. Henry Harvey says:

    Hi Linda,
    There are words you learn when you get older: myocardial, infarction, lymphedema, stage four, etc. that you really don’t want to know. But you have to. The only choice is to fight.
    Thanks for writing.

  6. Henry Harvey says:

    You are both very fortunate to have each other during these tough times.

  7. Henry Harvey says:

    Great big hunks of life boil down to having a bit of luck…or not having a bit of luck at a key moment in your life.
    When Pam and I met, it was the wildest accident of fate, a million-to-one chance. But we both grabbed that chance and didn’t let go.
    Big hug!

  8. Henry Harvey says:

    Not to compare humans to animals by any stretch, but I have had horses with this issue. It is no easy task to resolve I can assure you with a 1500 lb animal.
    Every day wrapping and trying to do belly massages and warm compresses.
    An infection, age, stress, sometimes no reason given; but if left untreated is extremely painful and they have limited ways to tell you.

    I was blessed to have escaped lymph edema so far as they only removed one. I worked with a tech who suffered with it in her legs and of course we stand on our feet 8-12 hrs a day. She had custom pants made ( she said insurance allowed her 3 pr a year). Most days she wore long dresses. 
    My heart went out to her. She always volunteered at church, babysat her grandchildren and never complained. She once told me she accepted this because it was what would give her more time to be with her family and see her grandchildren. She said she had a lot to teach them and wasn’t going to let this deter her. I thought,  what fortitude. Even though we were of different faiths and colors, we became sisters after my mastectomy.
    I too, feel there has to be a better option for treatments. 

    As far as insurance coverage goes, I remember a patient’s spouse; also an attorney, share with me he couldn’t get his wife’s wig covered after chemo left her bald. In that case, I suggested his doctor write an order for a follicular prosthesis. That WAS covered. 
    I know her insurance did cover her stockings, so I never gave that a thought that those valuable necessities of card weren’t covered. Maybe it’s just how they are ordering them (coding them)or what they’re calling  them.
    Just a thought. Every insurance is different. 
    I’ll be anxious to hear of your progress.
    I’ll try to help if I can.
    Extra hugs for Pamela.
    Pam F.

  9. Henry Harvey says:

    Hey Pam,

    Experimenting with the coding is certainly worth a try. Thanks.  I like the idea of a follicular prosthesis.  I get it.  And I will let you know of our progress along this very strange odyssey.
    Big hugs,
    Henry and Pam.

  10. Henry Harvey says:

    This is some pretty terrible suffering for you and Pamela. I wish that medical treatment was much more patient centered than it is profit motivated for you all and the others with this debilitating condition. I hope that you will receive that luck and support you need.
    Craig A.

  11. Henry Harvey says:

    Hey Craig,
    Thanks for the kind thoughts.  I communicated with Kathy Bates this morning and we are hopeful that we will be able to help. 
    Don’t think I’d mentioned this, but we’ve been working on “lymph” improvements for over a year now.  It all takes time.
    Best to Margaret.  Hope your new job is fruitful and to your liking.
    Henry and Pamela

  12. Henry Harvey says:

    Good article keep your hope up
    Debbie A.

  13. Henry Harvey says:

    You and Rick are excellent role models, Deb.

  14. Henry Harvey says:

    Sending prayers and strength as you continue on this journey! If anyone can do it, you can! What an eye opening yet also frightening article. The fact that you are also talking about your personal journey with Pam, makes this article really “hit home”!

  15. Henry Harvey says:

    Hi Regina and thank you sooo much for your kind wishes! You get to a certain point in life when you realize that…just possibly you might be able to give a “heads-up” to others who are going through a mess, so they can possibly have an easier time of it. Good to hear!

  16. Henry Harvey says:

    It’s the kind of information that leaves you speechless. What an absolutely horrible after effect. You and Pam have a hard row to hoe, but if anyone can do it, it is the two of you. Strong, determined people who don’t bow to circumstances. Here’s hoping for more positive updates in the future.

  17. Henry Harvey says:

    Hi Rosemary,
    Pam and I remain in awe of some of the friends we have who have suffered and survived far more difficult trials. And beauty is truly in the eye of the beholder. Ever notice when you meet someone that they become more or less handsome or beautiful as you get to know who they really are? What blows me away is when I see an infant, such as the image in the beginning of the article, who is, at age six months already wrapped on all four limbs. That kills me. Progeria as well. Pamela and I have been blessed with almost 50 years of marriage in which we’ve lived and loved and worked together daily. And we’re closer than ever. Our goal now is to help. …sorry for the rambling….

  18. Henry Harvey says:

    Henry just a note to tell you both that I love you and your attitude for life. If anyone can beat this, you will Pam. You are great mates for each other, too bad that EVERYONE can’t read your articles. So glad that you are on top of getting you Pam well. Love you both. I’ll tell you one thing, that there is a guy up there that hears you, sees you, and I know is helping you. Lots of love, Phyllis

  19. Henry Harvey says:

    Hi Phyllis!

    It’s wonderful hearing from you and thank you for your extremely kind words!

    Pam and I still remain in awe of continual mega-doses of Southern hospitality and out-an-out, no bullshit friendship and terrific sense of humor.

    Both of us are very much hoping you might be able to schedule a little R&R down here.  There’s lots to do, some superb food and everywhere you go, someone has a story or a tale or a joke.  In the space of five minutes, six or eight people will mosey on over and get into the conversation.
    Pam and I have lost 90% of our edginess coming down here and are working on the other 10%.  Neither of us ever thought before that we had to work on being nicer to catch-up………..but there it is.  The truth.  
    Example:  I don’t think I’ve heard anyone beep their horn down here in a year.  In PA, going into Philly, it would be every two minutes or so.

    Big hug!!!

    Henry and Pam

  20. Henry Harvey says:

    We have caregivers that can’t even get the TED hose on my Dad.  And then there are days they don’t put them on properly and they put creases in his skin. Can’t wait to see what you have come up with.

    And God bless neighborly neighbors.Sounds like you guys hit the jackpot on this move. As did they.

    Please keep me posted on your progress.  Brian said there are about 10 fund raiser apps, but the 3 we’ve been talking about are his favorites. 

  21. Henry Harvey says:

    Thank you, Sam.

    Those creases you mention can be deadly serious if they succeed in stopping the flow to an area.  And that’s possible with the strength of those stockings.

    We really did luck out, though friendliness and kindness are drastically more common down here.  This isn’t just a honeymoon time with our liking new surroundings.  We have made waaay more friends here in one year than thirty at the old house.  

    If and when you guys come down, we have a very very long scenic stream going down our property and up to two sets of falls.  Then there are the Big Falls about a quarter mile up the road where the road just stops.   

    We were heavily braced for some kind of religious or political fallout down here or Yankee go home.  Never happened.  Never came up at all.

  22. Phil says:

    I applaud you for your candor and openness.   As I age, I get more cynical about the massive for-profit health and insurance industries.  True care for patients…not in the equation.   Pat has to wear men’s strength compression stockings every day.  They are costly but not break the budget bad.  But as her toes peek out from wear, I sit and carefully hand sew them while she is wearing them to extend the usage.  I do massage her legs as well.  What Pam is going through is orders of magnitude more concerning.  I can only keep good thoughts for you both and admire your strengths.  That marvelous mind of yours will continue to develop solutions.

  23. Henry Harvey says:

    Thank you, Phil.
    I truly hope neither of you have to has to go through the lymph nightmare.

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