A Man's Guide To All Things Lymphedema

One man's journey of coping with Lymphedema through humor and male bonding
by Kevin L. Donahue

If you are reading this, at some point in your life a surgeon removed a part from your body that you'd much rather have kept. Perhaps it was a testicle, a section of your esophagus, your colon, or that big ugly mole on the top off your balding head. Sometime after surgery, you ended up with lymphedema, a chronic condition that can be managed if you adopt some simple routines such as a skin maintenance regimen and daily physical exercise. Although seemingly easy, these recommendations present men with some real challenges. 

I know this is true because at fifty-seven, I'm a two-time cancer survivor who has been diagnosed with melanoma in 1970 AND esophageal cancer in 2000. Managing to get through treatment for both cancers, I happily assumed all was well until last winter when I began to have severe swelling in my right hand. The next thing I heard was my General Practitioner diagnosing me with lymphedema and referring me to a vascular clinic. I decided to remain calm and Googled "lymphedema." To my chagrin, I kept being directed to websites devoted to women with breast cancer.    

Now don't get me wrong, I'm very sensitive and supportive of breast cancer survivors. My issue wasn't with the female focus regarding lymphedema, it was the lack of information available for men.

At my first vascular appointment I was filled with trepidation - okay, fear. Flipping through the basket of dog-eared waiting room magazines, I searched for a Car & Driver or Popular Mechanics. Instead my selection was: Redbook, Scrap Booking Today, Better Homes and Gardens, and Celebrity Hairstyles. The magazine selection should have been a clue. When I looked at the others patients around me and realized I was the only man in the room, I instantly felt uncomfortable and very much out of place.           

Here are two simple truths that I accepted after that first vascular appointment, and that we, the men of lymphedema, must accept:

  1. When we go to doctors' offices we are going to be completely surrounded by women and there will be nothing of interest in the magazine racks. Either we start scrapbooking or we start bringing our own reading material. Better yet, we could all bring in some manly magazines and leave them in the rack for the next one of us who'll come around. Whining is not going to do us any good - I already tried it.
  2. The only way to win the lymphedema battle is for us to care for ourselves in a consistent and purposeful way. We are going to learn some simple exercises, wear goofy looking compression garments, pay attention to cuts in our skin that we normally would have ignored, and we will have to become familiar with this stuff called moisturizer. It is guerrilla warfare that we will have to face every day. WHOOAHHH!             

So get up, suit up, and walk point. Unless we hang tough and push our agenda we will never see a camouflage compression gauntlet or a copy of the Sports Illustrated Swimsuit Edition in our doctors' waiting rooms. Contact me at LEMenUnite [at] gmail [dot] com to share your story and receive support. I am looking forward to hearing from other "men of lymphedema."