The Silent Epidemic

aaa bates

Kathy Bates, the poster gal and spokesperson for this affliction

I consider myself to be a moderately well-read person.  I can correctly use the word, simulacrum or quotidian in a sentence without breaking a sweat. …golly gee.  But there’s one particular word that I learned seven months ago which has changed my life and the lives of my family and some friends.  Gonna keep you in suspense for about twenty more seconds… and for good reason.  A tiny hint:  This is a word that both men and women should know all about.

We haven’t kept it a secret that Pamela was hit with cancer this past year.  And it’s been rough.  With fingers, toes, and eyes crossed, we are hoping that we’re done with it.  What is interesting, however, is that for the monumental amount of time and number of visits we’ve had concerning the cancer, not one time was the word I’m alluding to mentioned.  Not…once.  And there’s a reason why.

aaa cover shotThe word is lymphedema, and there’s a damned good chance you’ll get it after your bout with cancer or radiation. I’m sure you know the word lymph, and you know that you don’t want cancer to spread to your lymph glands.  That’s bad.  And so, to preclude that from happening, they may perform surgery to remove any number of lymph nodes from your body, to determine if the cancer has spread elsewhere in your body.  It’s usually necessary, but no one tells you the consequences of this action.

Pamela had fourteen removed, and all came out negative.  Some have more removed. Some have fewer.   If you are even potentially concerned about the possibility of someone you love… including yourself, contracting cancer… pull up a chair.  And no, this is not a “fun” article, though possibly life-changing.

Your lymphatic system is, indeed a system, not just a couple of tidbits spread here and there around your body.  The nodes they remove to save your life are the same nodes which have been channeling and controlling your lymph fluid in your body.  What you need to know is: we are talking about a LOT of fluid.

Once they’re removed,  you are sent home, with barely a passing mention of what you probably will be up against.  Maybe it’s because they don’t want you to yank the wheel and drive into a tree on the way home.  Pam’s cancer treatment lasted half a year.  Her treatment for lymphedema?  Well, that lasts till the day she takes her last breath.  

aaa poster girlCatch-22:   Is there any good news?  Well, there’s news…if you keep on top of it.  But the bad news is: Right now, the treatments that lymphedema  patients are given, belong to Seventeenth Century technology.   I’m surprised they don’t hand you a jar of leeches on the way out.  Instead, you are handed a shopping bag filled with various sorts of bandages, a long roll of  foam, big roll of gauzy stuff, and some adhesive tape.

You must then go to a specialized physical therapist daily for 4 to 6 weeks to get lymphatic massage, and you then learn the process of wrapping the afflicted limb(s) in the proper sequence which takes about a half an hour. If you have the right kind of insurance, this is okay.  If you don’t, count on $200-$400 per session for them to “wrap you.”  You Tube has many videos on this procedure if you need a refresher, and you certainly will.

You are STRONGLY encouraged to come up with a care giver, because for most people, doing an adequate wrap on yourself is nearly impossible and extremely easy to perform  incorrectly.  I am Pam’s caregiver and I am 100% in on this.  Not all people have a caregiver, however, and not all spouses can hang tough.

I’m going to assail you with one last crappy paragraph about the realities of lymphedema.  If I didn’t tell you the entire story, you’d resent it later.  Having said this:  keep in mind there is a light at the end of this tunnel.

Although lymphedema afflicts both men and women, I’m talking mostly to the women right now.  No matter how perfectly you kept your body, no matter how slender and shapely your legs were, the lymph fluid screws up everything… through no fault of yours.  It is humiliating.  It is…unfair.  It can be so depressing that some people just give up.

The Catch-22 Problem?   Right now, as of 2/21/2016, the only real treatment is wrapping the legs or arms, with many bandages.  Pam’s 12 bandages take me about 20 minutes to put on…and I’m pretty quick…. and she has somebody to do it for her.  Not everybody has that.  The kicker, however, is once you’re wrapped, you look like you’ve just been in an auto accident.  No one wants to go out on the town with the bandages on and you risk becoming a house-bound hermit.

Where’s that ray of light, Henry???   Pamela and I and a small core of people are tackling this affliction, and have come up with something that works.  Are we scientists?  No.  Are we geniuses?  No.  The only good thing about this affliction, in a backwards sort of way, is nobody had spent a lot of time solving it……… till now.

We already have a functioning prototype.  It’s such a slam-dunk easy solution (in theory) that its viability is never in question, once you see it.

This thing goes to the key Catch-22 problem.  In order to fight back and win against lymphedema, you need a caregiver and lots of time to put the bandages on and then off.

aaa armWe’re solving this:  Here’s a comparison :  Instead of 20 minutes to put them on (using a second person) it takes under two minutes, once you learn how.  Instead of looking like what Pamela calls, The Michelin Man, you look…….  Are you ready for this?  You look better with them on than with them off.  You can easily go out shopping while wearing them, and maybe even get whistled at.  The device actually reduces the silhouette of your legs or arms.  It’s comfortable.  It breathes, it’s adjustable, easy to put on and…you look pretty.  In fact, the more you use them, the more you win the battle against this truly nasty affliction.

To muddy the water just a bit, recently there have been a couple of companies that have put their toes in the water to correct this problem using Velcro  It’s a start…but only a partial solution.  Having purchased them to test:  here’s the glitch.  The Velcro bands they use are very large and require significant strength to apply.  Translated:  You’ll need a caregiver… a second person, not just once in a while but ALL THE TIME.  Second glitch: The large areas of Velcro begin to get dog-eared and tend to pick up lint, particles, etc which impede their viability.   Third glitch.  They are bulky and unattractive.  Does that sound a bit vain or inconsequential?  I assure you it isn’t.

 I’ll bet you have a question about now:  Why has no one addressed this affliction?  Three reasons:

(1)  With only 10, 000,000 people in America suffering, it isn’t a large enough group to bother taking action.   Put bluntly:  It isn’t profitable enough.  Yeah, that really stinks.

(2) There isn’t some magic pill that will solve it.  It requires something very basic: a second person to wrap your legs or arms or torso, with up to 12- 14 separate bandages.

(3) It isn’t a “sexy” affliction.

Right now we have a tiny core group working on it.  That group will grow.  We have the domain name already in our custody for this site to help you.  It’s not up yet, but the domain and the website will be  FIGHT LYMPH.COM

How can you help?  Write in.  Ask questions.  Make suggestions.  You may have to sign a non-disclosure on some questions…but I think that’s fair.

aaa lace armThis whole thing came about because Pamela got hammered.  Unabashedly, I’ve been working on this device for six months… with Pam in mind.  But helping others?  That is the core definition of happiness.  Write in.  Share your war stories.  Or… if you are even a little concerned about the prospect of cancer, tuck this article away for future reference.

A gentle hint:  I sincerely hope none of you has to face this scenario of cancer.  If and when you do, look your surgeon in the eye and say, “I also need to know about the possibility of lymphedema.

DCF 1.0Henry and Pamela





15 Responses to "The Silent Epidemic"

  1. Henry Harvey says:

    I couldn’t agree more on the caregiver. You are one in a million mister! Sherrell has literally taken over, with zeal, to pick up where I can’t. She is amazing! As I’m sure you are. Thank you thank you thank you.

  2. Henry Harvey says:

    Hey Bruce!
    Sounds like you have a saint down there. Bravo to Sherrell!

  3. Rachel says:

    This is such wonderful news! I am a massage therapist and do cancer massage, so I see lymphoma a lot! I’m learning lumphatic drainage to help those more who need it. Not only do I see this on a professional level, but I was diagnosed with tongue cancer a year ago and had 17 lymph nodes taken from the left side of my neck. Fortunately none had cancer in them. I still had 2 months of radiation to the head & neck and weekly chemo treatments for those 2 months as well. All is good now minus some uncomfortable side effects I’m still dealing with. One being lymphodema in my neck and lower face. It’s not usually that bad unless I’m sick or if I have cried at all. When it hits though- it hits hard causing so much swelling in my face that I can barely see through my slits of eyes, and it’s tough to swallow due to swelling in my neck/throat. I can’t wrap my neck like you would normally wrap a limb. So I just suffer when it hits hard. I do fear that it can get worse as time goes on. I REALLY hope I never have to deal with that sort of swelling on a daily basis. If I do, I’m not sure how I’d treat it!!!!! I’m so happy that people- YOU, are looking into better ways to treat this!!! Thank you!!!! I will most definitely pass this article along!!!

    • Henry Harvey says:

      For things that are “mechanical” and strangely, this is, indeed, a mechanical problem, there is almost always a solution. Having it in the neck obviously provides a very real challenge. It requires some major-league thinking “outside the box”.
      Don’t give up. There’s a way to handle this.

  4. Rachel says:

    Thank you for your encouragement!!!

  5. Henry Harvey says:

    We have caregivers put TED hose on my 93 year old Dad everyday. They are a bear to put on. Could your invention be a replacement for compression stockings?

  6. Henry Harvey says:

    Yes, Yes, and Yes!

    Wish you could beam over here to sit in on a “lymph meeting”. Not being coy, but I think we have a tiger by the tail and are not communicating specifics over the Internet at this time.

    We are looking to knock this out of the ballpark. Anyone, even the feeble or morbidly obese will be able to get them on…easily. Not joking.

    Most lymphedema items are WAAAAY overpriced as well. We’re looking to make a profit….but a reasonable one. There’s such a thing as kharma…
    And, with women in mind, they even look good….very good.


  7. Henry Harvey says:

    Awesome, Henry. I know of this and think it is amazing how many people you will help just by this blog. It is not often spoken of because everyone is paying more attention to living than what you may have to live with after the fight. Bravo and all the best to Pam.
    Donna Resta

  8. Henry Harvey says:

    Thanks Donna!

    We’re working on something that will hopefully help a lot of people where it really counts: supplying something you can put on yourself, no matter how disabled you are (no caregiver required) and actually look pretty ( or handsome) wearing it. Infinitely adjustable, comfortable, and no priced to rip anyone off. You wouldn’t believe what they charge for this stuff.

  9. Henry Harvey says:

    So I’m looking at this lovely lace, compression sleeve and I’m wondering; if I’m alone can I roll this up and put it on by myself without putting my fingernails through it? Does it come in sizes, cause everyone doesn’t start with thin arms? Does it come in colors and if it does, does the dying process change the size or effectiveness of the sleeve? And lastly,what about leggings? Will they be like tights or more like long, leg warmers? Love to you both, P


  10. Henry Harvey says:

    Hey Patti,

    The lace compression sleeve already exists and it’s fine. It’s great. That’s not the thing we’re working on, though.
    What we’re working on is hugely more effective and is focused very heavily on the leggings.
    At this point, we have a small team and we’re mutually promised not to send any pictures or detailed descriptions over the internet…for pretty obvious reasons.

    We’ve got just about all the “wrinkles” ironed out and are working now on making it as simple and good-looking as is possible.


  11. Henry Harvey says:

    (vetted + redacted e-mail from a friend)
    The wrapping and the swelling should not be. They should have developed better ways and patient care. To boot, they always seem so condescending. Your invention is genius. As an added thought, do you remember the old Chinese finger lock trick that tightens when you try to release your fingers. Could that same principle be applied to special material that needs to be compressed to put it on a swollen limb and then released or stretched to tighten around the limb? Compress to remove. Just an idea.
    Phil K.

  12. Henry Harvey says:

    Hey Phil,

    Hi Phil,

    Thanks for the words of empathy. I wish you lived a bit closer. We have round table bull sessions where anything is game. You’d fit right in and I’m guessing your contributions would be worth their weight in gold.

    Yes, life isn’t fair…probably never was and probably never will be. I share many of your feelings particularly in the last lines of your e-mail. I was extremely angry with the concept of a wise and loving God……..working in such “strange ways” as they call anything that really stinks. 12 million kids under the age of 5 dying for no reason at all, even if they pray every day. That’s pretty “strange” all right. But that’s a big topic for another day.

    We actually have examined the Chinese finger puzzle concept. Great minds…..

    What we’re doing right now is addressing several additional and highly important parameters in seriously addressing this affliction. I’m mind-bogglingly amazed that the extra parameters weren’t even considered, much less addressed. One biggie, (think of a mature woman with arthritis and perhaps some obesity as well even being able to put these things on….BY HERSELF. Most, absolutely require a second caregiver. A second, seemingly frivolous but highly important factor. Can this “thing” be designed in such a way that it does the job, is comfortable….AND…looks good enough that a woman (or man) wouldn’t be embarrassed to wear out to check the mail, get some groceries, etc. If the device is so ugly that you don’t wear it…… never get better.

    The “Moon Boots” that Pam wears for an hour each morning pump up and cost…..$12000.00. Most of the simple devices cost 250-400 dollars and should cost a quarter that amount. We’re looking to hit a home run…make something that works, looks good, you can put on yourself….and (if you’re a woman) look PRETTIER…not monstrous.

    We’re looking at Kickstarter for some funding. And CAD CAM 3-D printing for some key components.

    Actually, if you’re interested, I have an engineering question or two you might be able to answer. If not, no sweat.


  13. Henry Harvey says:

    Dear Pam and Henry,
    This information is staggering; I had never heard of lymphedema before.
    Keep strong and informed. My heart goes out to you both. I appreciate the information and will act upon it. Thank you. I hold you in my thoughts and prayers. Nancy S.

  14. Henry Harvey says:

    Hi Nancy,

    It’s nice to hear from you and thanks for your kind, empathetic words.

    When you think “outside the box” on a regular basis, sometimes you luck into some solutions that wouldn’t be considered in a logical progression. I think that’s what is happening over here. Wasn’t terribly difficult when you look at the prehistoric solutions currently being used.

    With a little help from Kickstarter (fingers crossed on that) we may be able to seriously help some women….and men who are afflicted.

    You get to a point in your life where money and being well known aren’t so terribly important. Helping people is just waaaay more important.

    Wish you could communicate more. I’ve always enjoyed seeing how your mind works!


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