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.
The 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.
Catch-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.
We’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.
This 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.