Sometimes unknown things in life frighten oneself as did this vaguely familiar word called “Lymphedema” which became a part of my life following surgery for a routine bladder tuck and hysterectomy. At the age of 63 years, I had been blessed with exceptionally good health with a good life style surrounded by personal and professional routines. “Lymphedema” was a term I only associated with breast cancer from conversations with my mother’s first cousin who is 10 years post mastectomy recovery at the age of 84.
My primary physician had mentioned the possibility of bladder repair earlier, but it took about two-three years before I was no longer able to deny physical body changes that affected my quality of life. My sister-in-law had similar surgery successfully five years previously and I opted to use her excellent physicians. She has not experienced Lymphedema.
Routine pre and post surgery procedures were discussed by my surgeons. Minimal estimated time of recovery was 4-6 weeks with specific instructions pre/post surgery. My questions were satisfactorily answered about surgery/risk factors as I mentally and physically prepared for the impending surgery. The only prior surgery in my life time was for Tonsils and Adenoids (T&A) removal at the age of 4 with fond recovery memories of all the chocolate ice cream a child could possibly consume. Biological births of two healthy children were fortunately fast and uncomplicated vaginal deliveries. Three years prior to this surgery, I was bitten by a housecat and was treated with antibiotics as well as Occupational Therapy (OT) for about six weeks for treatments of knots in my legs. With no real improvements and fast paced work schedule, I consciously thought the knots would eventually go away, but I was totally wrong. Compensatory limping I learned was not the best way for one’s body alignment. I was not able to bend my right knee properly and limped around for several months before contacting my primary physician again. She referred me for a Physical Therapy evaluation on the knee which resulted in several months of Physical Therapy. Each time I attended PT, it was an investigative search as to the newest location of the knots, which seemed to be enjoying re-circulating in both legs. Blood work up for the infection did rule out Cat Scratch Fever, but was inconclusive as why I still had the knots. When the knots settled behind the right knee, I began to walk incorrectly which put my entire body out of alignment. The majority of the knots began to dissipate, but some are still present today. No one really understood what was happening and laughingly in PT, I referred to myself as the “Cat Lady” because of my love of cats and the continuing difficulty with walking following the incident. The Physical Therapists did an excellent job in re-teaching me how to walk correctly. It is amazing how much one takes the human body for granted.
The term “Lymphedema” was never mentioned as a possible condition following a bladder/hysterectomy surgery by my surgeons. I notified my primary care physician of the impending surgery via e-mail and she reviewed my current supplements. She consulted a nutritionist familiar with my type of surgery for additional supplements needed to support my body in this time of stress/recovery. A month prior to surgery she recommended a supplement regime as well as having me schedule a post surgery appointment follow-up. The vaginal surgery went exceptionally well and I was dismissed within the normal expectation time. My hospitalization surgical procedure went as planned and treatment was exceptional by all staff and professionals. I enjoyed the benefits of being “Queen for Day” during my stay as well as being in a hospital with only private rooms. It was during my post-recovery visit with my primary physician that she recommended me for “Lymphedema” treatment. As expected my fatigue level was improving, but still not to my previous level and my body felt swollen. I was gaining more weight and didn’t understand why. One month after surgery with a follow up visit to my primary physician, Dr. Anne Coleman, I explained the changes noticed in my body and she explained what was happening to my body. Typically many of her patients with similar surgery began having swelling issues 4-5 years following this type of surgery due to interruption of the normal circulation of the lymphatic system. This preventative treatment had already begun showing signs of need in my body. I didn’t understand at the time what that encompassed. Fortunately, my primary physician understood what was happening and she referred me to Baylor Hospital in Plano for “Lymphedema” treatment.
Professionally, as a Speech and Language Pathologist, I have always suggested my clients remember that they are first persons with a speech disorder and not a speech disorder. Thus, when diagnosed with this medical condition called “Lymphedema”, I had to remind myself of that same thinking. I am a person with “Lymphedema”, not the disorder. As a former facilitator for the non-profit organization, Journey Of Hope, I wisely learned about the normal process of grief recovery that one encounters with loss of life/regular routine. Reflecting my journey post surgically, I recognize the stages of grief/loss incurred during my grief process of recovery. Initially, I wanted to deny this existence and then pretend (bargain) that if I followed all the instructions for recovery, it would go away. When having to wrap my legs daily with tape, I would say a few choice words as I did not want to be taking 30 minutes per day to wrap my legs and putting on compressing stockings as there were too many other things in my life I would rather be doing! Also, I became very mad/angry that I was dependent on my spouse to help me with these wrappings as well as taking his valuable time for help. Loss of independence and my previous life style were incomprehensible. What a great graduation recovery when I no longer needed to wear the leg wrappings. When I was fitted for compression stockings and the possibility of a “Lymphedema” machine to be used daily for the rest of my life, I became very angry and pretended “I am not going to need these forever–this is not the life style I selected for me”. I was embarrassed when I had to go purchase/be fitted for compression stockings as I am too young to need these now. I did cancel the order for the compression machine, but continue to wear the compression stockings. When my husband lovingly laughed about the way I was learning how to put on the compression stockings properly in the safest way and quickest time, I learned appreciation for a sense of humor in this healing process. Laughter can release much stress. In my own time with understanding, education, reflection, meditation, exercise, diet changes learning “eat to live” thinking instead of “living to eat” thinking, I am slowly beginning to accept this thing called “Lymphedema”, but I am still realistically accepting it on my terms. During this healing process, I am grateful for all the persons supporting me in this acceptance process. I may never fully understand the “Why/Cause” of this swelling in my body. The healing process continues positively but not without the support of my spouse, my family, my friends, my spiritual leaders, and all my medical professionals/staff. My Occupational Therapist, Kristen Keesley, enabled me to “talk about this thing I disliked” as well as compassionately explain all the new terminology and grieving thoughts associated with this life style change. The treatments definitely are relaxing and physically beneficial. When I went for compression fittings, the vendors were kind, empathetic and understanding when I showed up in denial mode with “I am too young for this to be happening to me attitude” and “Do I have to wear those?” I’m sure the look of my body language conferred my true feelings. Since treatment, the swelling has reduced in the rest of my body and continues to decrease in my abdomen along with increased gains in my energy level. There are still some unexplained knots in one leg which may need to be re-addressed. Both my husband and I am grateful to have my “sexy looking” legs back!
Also, I am grateful for insurance companies who enabled me to financially move forward with the necessary surgery and post treatment. The success of the bladder tuck definitely improved my quality of life. Personally, I know that each individual has a gift to be shared for the Good of All. I am grateful for all the compassionate individuals mentioned above who have been and are there for me as I evolve in my understanding of this thing called “Lymphedema”. I have learned that my personality type is one of a “giver”, but life is one of a balance between giving and receiving. I am appreciative of all my care-takers’ individual supportive gifts which have been graciously received in this time of my life journey.
So, my condensed perspective in dealing with Lymphedema is the following:
I miss the time before of a Simpler Life
Not complicated by this thing called Lymphedema.
Sitting on the brink of Acceptance,
I let the Denial, Bargaining and Anger go.
Watching as the Wonders of Life continuing to focus on ME
And not this thing called Lymphedema.
Yes, the Wonders of Life continue in ALL its amazement!
