In a former life I was an Human Resources Director/Consultant/Recruiter for 15 years. Then spent 14 years at my Dream Job being a Flight Attendant for Delta Airlines. Just 43 days after my retirement in Nov. 2008, I was diagnosed with vulvar cancer. On Jan. 17, 2009, a 5 hour surgery excised a great deal of my vaginal tissue, clitoris and all of my inguinal lymph nodes.
As my surgical healing progressed, I continued to have massive swelling and pain in my mons pubis accompanied by tie-dye tee shirt coloration. My gynecological oncologist put me on 2 rounds of very strong oral antibiotics with no improvement. I was re-hospitalized for IV antibiotics twice a day and an Infectious Disease Specialist was called to consult. Three days later a PIC line was installed to dispense liquid antibiotics at home for the next 19 days. Again, no improvement and everyone on my Support Team was scratching their heads.
Thankfully, a good friend had previously suggested that I be referred to a Lymphedema PT. My doctor’s office was a bit hesitant, said they were a rare specialty but would check around for me. As luck would have it, my local hospital had just hired an LPT, Andi Garris, after a year long search.
I became one of Andi’s first patients. Literally, her desk was just a bit larger than a TV tray, her receptionist was her cell phone and she had one, tiny treatment room. * Within moments of seeing my condition, she immediately diagnosed my “Bermuda Triangle of Lymphedema” (created by a previous hip to hip hysterectomy scar and now the 2 scars created by the surgical removal of all of my inguinal lymph nodes.) She has since told me that when she saw me that day, she prayed she would be able to restore my damaged tissue to 75% health ~ now at 100%!
She saw me every day for 2 weeks, working on my legs, mons pubis and lower abdomen, seeking an open lymphatic hi-way to drain my accumulated lymph. Then teaching me to do my own massaging. And also how to break down my scar tissue and create greater drainage and circulation.
Our next challenge was finding a way to maintain the necessary compression on my crotch area. Full length stockings for my legs was the easy part but bandaging my ‘other area’ was not! After a few futile attempts (multiple girdles with an added pressure pad, a female jock strap looking contraption often used by pregnant women). Then a call to her Juzo rep. informed her that I could get a pair of custom made ‘bike shorts’. Several months and HUNDREDS of dollars later, I was fully outfitted with the 4 proper, compression garments to be worn 24/7 except for showers and nightly massage, likely for the rest of my life. I have since found out that light, trampoline bouncing is helpful in strengthening my legs and assisting my lymph movement. Also, yoga.
Quarterly checks of my tissue and exacting measurements for the next 2-3 years indicated that all processes were being successful. I now see my FRIEND, Andi about once a year to confirm my continuing success.
I am delighted to report that now, approximately 4 years later, she has a full sized doctor’s office, 4 more therapists, 2 receptionists and an assistant! They have also now added wound care to her office. I will be forever grateful to Andi for her extensive, targeted education, experience and passion to help lymphedema patients. Especially those of us that had been so misdiagnosed and shuttled around before landing on her doorstep.
Thankfully, after my cancer diagnosis, surgery, complications and recovery, I never developed “Why ME?” syndrome. It became apparent to me early on that my purpose was to educate women to be much more aware and in touch with their bodies. To trust their own instincts and intuitions and ACT when something was different for YOU.
This will be my 6th year participating in the ACS’s Relay for Life ~ the first time just 4 months post-op when I managed to walk 3 miles, NOT all at once! To date I have raised over $12,000 and am proud and uplifted attending each year. Especially that first lap in my purple SURVIVOR shirt : ) I consider myself a VICTOR not a victim of cancer and I do not “suffer” from lymphedema, I’m a lymphedema patient.
For 2 years after my recovery I also volunteered for ARFnets, an animal rescue and fostering group in my small county. (just South of Knoxville, TN.)
AND NOW ~ I am proud to be the TN Team Liaison and a Lymphedema Advocacy Group board member. As one of my co-board members so aptly put it, this is our way of giving back. “It is our dream to see the day when no patient goes without a proper diagnosis and treatment, and no patient has to struggle to afford medically necessary compression garments and devices they desperately need”.
I cannot end this without recognizing my family and friends, cancer and lymphedema supporters all. They truly have kept me afloat for these past 5 years and I’m sure will continue to do so!
