Chapter 2 - Lymphedema Strikes

         

Lymphedema Strikes

 

 

Not me!  Not this! 

I didn’t feel this way about cancer.  My cancer diagnosis was a blow, certainly a big one, but my reaction was more like – okay it’s my turn to take the cancer journey.  In my heart I worried but I also believed that my journey included survival.  All I had to do was go through treatments and move on.  I knew the cancer statistics; I understood my risks, hereditary and lifestyle alike. 

Cancer came with faces, faces of survivors; that were my friends, and neighbors and associates.  People came to me with words of encouragement and experience; they came to me with tips and support.  Cancer was a scary place, but it was filled with kindness.  It was horrible but it was good. 

Lymphedema was more of a challenge and a fearful thing than the cancer had been.  This thing, this chronic condition was truly an unknown in my experience.  It was faceless.  It was the big dangerous thing that could happen.  I had been in the cancer patient two hour workshop about the subject but I ignored the information.  Lymphedema wouldn’t happen to me.  The fates had dished up cancer and that was enough. 

Cancer is unfortunately common.  There are organizations and fundraisers and public education and we know cancer. 

Lymphedema seems rare – and uncommon.  It is neither.  It is mine.  It is yours.  When you develop lymphedema, it’s not just a detour on the road; it is the road from here on in. 

 

Grief 101

The diagnosis and reality of lymphedema is never a welcome thing.  To put it bluntly, I had to take time out and howl at the injustice of it.  I know that life is never exactly fair, and I know that there are people who are dealing with much more than I was, but damn it anyway. 

I needed to grieve the downturn in my health.  My lymphedema developed six months after my last cancer treatment.  I was alive but that oh joy, the cancer is gone, and this is the rest of my life time, was going to be spent with a new burden.  My get of jail card had been abruptly torn out of my hand. 

My cancer diagnosis came after I acknowledged the lump in my breast.  I realize now that I was in a bit of denial.  I had gone to a mobile mammogram unit the year before, accepted their ‘all clear’ as a fact and ignored what my fingers were telling me.  It’s a funny trick of the mind, I guess, but those irregularities I felt were ‘how my breast feels’.  Then I would add, that’s normal for me. 

Guesses were brushed aside when I felt a pain in my breast.  My fingers could push on the very same bumpy spot that was maybe not normal and I could increase the pain.  I kept quiet for a month; one more option for denial had to play out in my mind.  Perhaps this pain was related to my menstrual cycle.   It wasn’t.   I had a lump in my breast and that could be cancer.

There was one remarkable thing that I noticed. I would say, I have a lump in my breast and everyone knew that meant the possibility of cancer.  I found myself the recipient of a remarkable range of reactions.   I received support that was truly supportive.  I received support that missed the mark completely.  Remarkably I was avoided, as though cancer were an insurmountable barrier.  Those people, who should have stepped up to the plate with their support and didn’t, or whose actions and words added to my discomfort were given my forgiveness. Perhaps I represented cancer in a hurtful personal way.  Perhaps they were ignorant of how to be supportive.  As I write this and remember how it was, I realize that I have to forgive them again. 

But with a cancer diagnosis, I didn’t have to explain what that meant.  Also like a lot of people, I thought that once my cancer treatments were over, I could go forward. My big challenge was over.  Cancer had not convinced me that bad things could happen to me, or maybe I thought it was my insurance policy.  I had cancer, beaten it, so I’m good now. 

Upon my lymphedema diagnosis, I could count the factors involved in its development, like surgery and the radiation that I needed to battle the cancer. But I had ignored things that I should have paid attention to.  There had been special exercises we were shown as post cancer treatment patients.  There were numerous indicators that I was at an unhealthy weight.  I never did a stretch exercise and I never concerned myself with my overeating.  There is an unconfirmed possibility that I also had an underlying injury in my arm that I wasn’t treating properly with rest and care. Consequentially my body was taxed beyond its limits and I ended up with lymphedema.                                                 

Now I felt guilty too.   The only thing I knew for sure, these negative emotions would pass, especially if I did not dwell on them.  I certainly couldn’t add discouraged and defeated to the emotional burden I faced. 

Learning that this condition is chronic was one of the first hurdles I had to face.  Forever is quite a bit to get used to.  My life is over – is how the first words came out.  Only in time was I able to modify that to be ‘my life as I knew it was over’. 

Then after much more time and huge efforts both mentally and physically I have been able to say that ‘my life is so much better now’.  Not with any qualifiers concerning lymphedema, but simply and absolutely better and that directly because of my lymphedema.

  

“When I was first diagnosed with lymphedema I was scared.  I didn’t know my future and my present had been altered beyond recognition.”

 

Lymphedema Strikes - continued

The face of lymphedema was that of a stranger.  I looked around my community and could only find one person who obviously had lymphedema – the wearing of the garments being the most visible clue and her history of breast cancer quite well known.  I reached out to her, needing advice and empathy, feeling overwhelmed.  She was polite and distractedly responded to my questions. 

“I tell myself that it’s just a sore arm.” She said.

Could I really argue with her?  I almost did. 

“No.” I said.  “This is huge.”  Then I could say nothing more than thanks.  I realize now that she was in a totally different place in her lymphedema journey.  It is also likely that her lymphedema experience hadn’t cut such a huge swath through her life.  Or she adjusted to difficulties better than I did. 

My lymphedema was preventing me from enjoying many of my pastimes that would have eased my stress.  The bandaging that was the first avenue of treatment made me a visibly different person and the object of intrusive curiosity. Even a simple pastime of browsing in a store became an emotional challenge.  Stares, questions and often, believe it or not, friendly pokes on my bandaged arm.  My reaction was an angry hurt withdrawal that few understood.   

It seemed lymphedema, with the hurt involved, both socially and physically, had changed my personality.  Yet, I tried to maintain the image of a well-adjusted patient.  No one, after all, enjoys listening to someone who whines.  I tried very hard to fill my days, to distract myself within the pages of any book and to do ‘anything’ that might help my arm.

I believed that I would have had a community of supporters with my lymphedema diagnosis, just the same as I had with my cancer diagnosis.  But only a few people were even aware of lymphedema.  If people knew what it was, and how it affected patients, it would have been different.  I could have led the way, if I knew what lymphedema was going to mean for me.  But it was all an unknown.  There was little understanding so there was little support.   Even those closest to me had only a glimmer of what I was going through. 

Eventually I came to understand that the pain I experienced was not the average lymphedema experience.  Lucky me, I was the one in a thousand patient with the level of pain that I had.  I realize now that I should have sought professional help to deal with everything, but the pain kept me from thinking clearly.  I didn’t even think to mention the level of pain with my physiotherapists and because I presented well, they didn’t ask.  However I am grateful.  The pain became a huge factor in motivating me to change my life around. 

I remember my reaction to my lymphedema diagnosis.  Now some 8 years later, I wonder at that reaction, but I know now that I have been able to successfully manage my condition, first by will and now by confident habits.

I’ve learned to live well with lymphedema, something I didn’t know I could do.  I have been fortunate to have reduced the symptoms of lymphedema to a point where my life is pretty average.  But in the beginning, all I knew at the time was ‘This was huge’.  I doubted my ability to cope. 

 

“Little did I know that meeting the challenge of lymphedema would set me on a path that included wellness in my whole life.”