Lymphedema

Today is Lymphedema D-Day, as celebrated by the National Lymphedema Network (U.S.).  Funny, because I was planning to write a post today about my Lymphedema, the thing I have mentioned a few times but have not yet conquered on my to-do list.  It is the most debilitating residual effect from my two surgeries for cancer. 

I often mention my puffy achy right leg: that is from the removal of lymph nodes in my right groin/lower abdomen, closest to the primary site of my now infamous mole excision (hip), in May 2014 at Sunnybrook.  I was on mandatory bedrest for eight weeks following that surgery, mainly for the attempt at prevention of lymphedema. My right leg had to be elevated 80% of the time, 24/7.  Last spring I watched every single leaf languidly emerge on the lovely large maple tree outside my window. Every. Single. Leaf.

I also have a bit of post-thyroidectomy lymphedema in the left side of my neck and the area right under my chin.  Still just three months post-surgery on that one so hoping it will clear up with therapy.  

I have made contact with a certified lymphedema massage specialist/therapist in Owen Sound upon the recommendation of the local lymphedema brochure, but I have had to postpone my appointment with her until after thyroid cancer cells are considered all cleaned up.  She has read my CT and surgery reports, and she is prepared to help treat my leg and get some of the excess puff out of it, and then she will fit me with a custom-made compression stocking to wear on that leg to prevent further swelling in future.  

We still do have to wait though, as I mentioned there are still thyroid cancer cells running around, aside from the melanoma, so we don't want to push them in any direction they are not supposed to go.  The lymph system is connected throughout the entire body, so we have to be careful with it. 

"Lymphedema is the abnormal buildup of fluid in soft tissue due to a blockage in the lymphatic system. The lymphatic system helps fight infection and other diseases by carrying lymph, a colorless fluid containing white blood cells, throughout the body using a network of thin tubes called vessels. Small glands called lymph nodes filter bacteria and other harmful substances out of this fluid. However, when the lymph nodes are removed or damaged, lymphatic fluid collects in the surrounding tissues, causing them to swell.

Most often, lymphedema affects the arms and legs, particularly in people who have received treatment for breast cancer or cancers that affect the urinary tract, bladder, kidneys, abdominal areas. However, lymphedema can also occur in other parts of the body, including the head and neck. For people receiving cancer treatment to the head and neck region, the neck is the most common site of lymphedema, but it may also develop below the chin, in the face, and, less often, inside the mouth. 

Lymphedema may develop immediately after surgery or radiation therapy, or it may occur months or even years after cancer treatment has ended."  (Source)

People with lymphedema in an arm or leg may experience the following symptoms:

•     Swelling that begins in the arm or leg matching the quarter of the body treated for cancer

•     "Heavy" feeling in the arm or leg

•     Weakness or decreased flexibility

•     Rings, watches, or clothes that become too tight

•     Discomfort or pain, although often there is no pain

•     Tight, shiny, warm, or red skin

•     Skin that does not indent at all when pressed, or hardened skin

•     Thicker skin (hyperkeratosis)

The first five definitely apply to me (and my yoga pants) - they are not deal-breaking side-effects that I can't live with, they are simply a nagging achy constant reminder of my losses.  

My leg is achy especially when sitting, so I tend to lie down or stretch out or recline whenever possible, even standing is better than sitting, though that makes it swell.  Though I sit all the time for driving or visiting; it's liveable, I'm just bringing awareness to my situation.  Uneven terrain is difficult for me too, ice/snow, bumpy lawn, or an unexpected area rug on a flat floor, stairs, I'm not so sure-footed as I was before. 

Many many people have it worse than I do; I was lucky, given what my melanoma surgeon told me about it!  70% of patients who have the same surgery I had, develop lymphedema in their leg.  It sucks. But it is an acceptable trade-off for cancer in lymph nodes.  

I have lost an uncomfortable amount of flexibility in my right hip/leg, and in my neck as well.  My mobility is definitely affected.  Other than fatigue, that is the primary physical hurdle affecting my return to work.  My job is physically demanding (as well as requiring a clearer mentality than that of chemo-brain!):  I have a lot of work to do if I am ever to get back in the condition I was as Front End Manager at Bill's valu-mart. 

I expect to begin serious work on my lymphedema in April, when I am back on my thyroid medication, get metabolism going again, spring weather I can begin taking longer walks perhaps? (Excercise is a problem, my leg puffs when I'm on it too much, but at the same time it requires work - it's a fine line, and every day is different, I can't anticipate the severity)  Massage therapy and eventually the stocking, and yoga therapy is in my plan as well. 

In any case, lymphedema is common and treatable.  It is estimated that in Ontario alone, over 63,000 children and adults live with lymphedema. 

I will keep you posted on how my lymphedema goes.  In the meantime, please don't laugh when I limp, gimp, straggle, or creak when I first stand up after sitting for a visit.  LOL  Yes I feel like I'm old enough to match my grey hair, but I don't really want to show it.  ;-)