One thing I love about writing a blog is having the opportunity to “share my space” from time to time in order to also share the stories of others. This is why I’m so pleased to feature friend and fellow advocate, Suzzann Cummings, in today’s guest post. Suzzann shares a bit about what it’s like for her living with and managing lymphedema.
I hope by reading Suzzann’s words, someone out there living with lymphedema might realize that in this they are not alone either.
Living With Lymphedema
by Suzzann Cummings
Seven years ago, my life changed as I know it. That’s when I was diagnosed with breast cancer, Triple Negative Breast Cancer. Since I came from a fairly long family history of women who were diagnosed with breast cancer (my mother, paternal aunt and two cousins), I felt I had pretty good understanding of the long journey I was about to embark upon.
My decision was to have a bilateral mastectomy to remove a rather large tumor, along with a multitude of lymph nodes – too many to count – as my surgeon told me, but the pathology numbers didn’t lie…22 to be exact.
Little did I know, I truly had very little knowledge of what was waiting for me around the corner once the surgeries and treatments came to an end.
Now I’m not going to play the “blame game”, but very little was mentioned about my potential risk for developing the condition called lymphedema.
My surgeon did explain to me that there was a chance of developing this condition, but historically most of his patients did not develop it. At that time, I was more concerned about the surgery and chemo then I was of a little arm swelling and therefore, I asked very few questions and did very little to educate myself on it.
After I finished chemotherapy and built up enough strength, I received the go ahead from my doctors to have reconstructive surgery. The surgery was done on an outpatient basis and all went rather well. That evening at home, I noticed that I had developed swelling in my left hand. One thing I was very adamant about at the hospital prior to my surgery was that no blood pressure was to be taken on my left arm, or any blood drawn.
Two days later at the plastic surgeons office, I mentioned the swelling in my left hand. Never in a million years did I think I would be walking out of his office with a referral in hand to see a LANA certified physical therapist.
And so thanks to cancer, I embarked on another journey; this time it was with a life-long incurable, but treatable condition called lymphedema.
These days I manage and control my lymphedema by wearing a compression sleeve and glove. My garment is worn anytime I do a lot of repetitive motion or heavy lifting to help prevent major swelling and discomfort. I also have a night sleeve, which is made of a thick, quilt-like material that I wear as needed. I perform MLD or manual lymphatic drainage on myself regularly to help move the lymph fluid out of my fingers, hand and arm.
Maintenance and being vigilant in caring for your affected limb is important in living with this condition, as well as keeping any flare ups under control.
I’m one of the fortunate individuals who has been educated by a LANA certified physical therapist. She has been an amazing teacher by educating me on the proper care of my arm, as well as the importance of a healthy, low sodium diet and exercise. By following these guidelines, it helps in managing the swelling, but it also helps me to feel a little bit better about myself, as I’m quite self-conscience about the appearance of my arm when it’s at its fullest. The stares and the questions are something I’m still learning how to deal with and handle.
After all, there’s no guide book after cancer on how to deal with this body altering condition.
What frustrates me most is that there’s not enough talk about lymphedema.
There is not enough education about lymphedema and there are certainly not enough doctors talking to their patients prior to having breast cancer surgery and the possibility of developing this incurable condition.
Lymphedema can be controlled, but if left untreated, it can be very serious – even deadly.
My hope is that someday every doctor, oncologist and medical professional will address with their cancer patients the tell-tale signs and symptoms of one of cancer surgery’s potential lingering side effects – lymphedema.
And lastly, living with lymphedema is challenging, but please don’t be ashamed or embarrassed because you have lymphedema. It’s not your fault and there is help available.
A bit about Suzzann Cummings
Suzzann’s focus these days, is on advocating for the Lymphedema Treatment Act and for the passing of the Bill that would entitle those with this condition access to the much needed medical care with a LANA certified physical therapist, as well as obtaining compression garments, which in itself is quite costly.
Suzzann is an active member of the State of Illinois Advocacy Team for the Lymphedema Treatment Act. She is also on the Board of Directors of LANA – Lymphology Association of North America. She also serves on the Board of Directors of The Renewal Center – A Wellness Oasis for Cancer Survivors.
“The Renewal Center offers a support program devoted exclusively to people who have finished their day-to-day treatment and are trying to move forward with their lives. The end of treatment is not the end of dealing with healing.”