I Am a Fighter and Lymphedema Has Met Its Match!
I am approaching my third year with Lymphedema. After being diagnosed I could not believe how quickly this came on and how much my diagnosis has changed my everyday life. Three years ago, I was desperately trying to fight the feelings of fear of recurrence and trying so hard to live my life to the fullest post-cancer. About the time I was managing these goals my foot started to swell... My leg felt sore... My muscles ached... On Oct 13th, I woke up and I remember my body feeling extremely abnormal during my workout training. Within a few days, I noticed swelling in my foot and my leg felt extremely heavy. I could not make sense of it, but ever since October 13th I watched my symptoms go back and forth every day. For an entire year prior to this, I was getting sick often and could not get to the bottom of the cause. After several antibiotics, and countless trips to the Doctor, a specialist sent me for bloodwork. The results showed that my body had not ever returned to normal 2 years post-cancer. My cells stayed abnormal. My body was unable to fight infections. The worst part was that my cancer-fighting cells had flat-lined. If I ever had to fight cancer again it would not be easy.
Crushed by this news. I was angry. As I tried to handle the discovery that my body was not working properly I was also still trying to combat this new swelling. Within two weeks my ankle swelled so badly it turned over while walking and I could not stand. I went to the ER where they ran tests and kept me for two days after finding some fluid around my heart. At discharge they exclaimed "well, we can't find what is wrong so it must be lymphedema" and they sent me on my way. I followed up with my doctor and he said “There is no treatment for lymphedema, but you can buy a compression if you want to.” I showed up at the medical store asking for a compression and they were shocked that I did not know anything about my newly diagnosed condition. I did not understand anything about compression. They tried to explain it and gave me an off-the-shelf garment and again sent me on my way. A month went by and I swelled more and more. My body hurt. I searched for lymphedema and found more information about therapy to treat it.
I called a physical therapist and explained my situation; I found an angel that day. My physical therapist’s office closes at 4 every day and her caseload was already full prior to treating me... but in spite of this, she stayed open late just to treat me. After my long commute home from work, I would get there around 5:30 pm with her waiting to treat me; an angel to say the least. When I first met her I thought she was going to fix me... I thought this was going to get better. She showed me that it wasn't just my ankle, but also my leg, all the way up to my groin and even into my stomach. She talked to me about how to take care of my leg, introduced me to a nighttime appliance, and ordered me a pump, bandages for wrapping my leg, and compressions. I was completely overwhelmed. I started therapy 3x a week. Within a month my swelling increased, we switched to a higher grade of compressions and started bandaging my leg. A few months later my swelling was even worse. We increased compression strength and ordered more things to treat my leg.
Covid hit and therapy came to a stop. I started working from home and I thought I was going to feel so much better. By the end of the summer, my leg had ballooned up. I had sores, infections, and no range of motion in my ankle, knee, and toes. I went back to therapy and started looking for surgical options. I hated how my body looked and felt.
I had lost control over a situation that I hardly understood.
I found one surgeon within an hour from my house that could do a much-needed surgery I was looking into but he was reluctant because leg lymphedema is one of the hardest surgeries to have success with due to gravity pulling the fluid down. I found another surgeon in another state that was willing to take a look at me.
The surgeon did a test to check my lymphatic flow. After a 2 day study, the results were heartbreaking. I had zero chance of the Physical Therapy, compressions, garments, pump, etc. ever working. After shooting my toes with dye over the course of 2 days it was determined that the fluid never left the nail beds of my toes. It never traveled up my leg the way it would in a leg not affected by lymphedema. It never even tried to move. My entire lymphatic system was broken. The lymphatic system is connected to the immune system which explains repeated illness and low white blood cell count. I appreciated that I had an answer as to why it was so bad but I was so sad to understand that it was in fact so bad.
Because I had put so much work into my treatment and hadn’t been diagnosed with lymphedema for that long, I would be a candidate for surgery. After many other tests, reviewing prior surgeries and diagnosing the stage of my lymphedema, it was determined that I would need a lymph node transplant from my abdomen along with aggressive liposuction. Fat stem cells had built up my leg and taken it over, making it impossible to remove any fluid from it. The surgery would take 9 hours and two surgeons would work on me simultaneously. One surgeon would operate on my abdomen while the other one would work on my leg. The surgeons told me the goal is an improvement in my leg function, but not a total return to normal. This surgery would only be aiding in helping to reduce the size and health of my leg. I had lost hope that it would all work out but I fully believed that I would handle whatever came my way. Most well-intentioned people said I could believe the best and that it would all work out.
After a few complications from surgery, 16 weeks at home recovering, and more work than I could possibly explain from therapy; I had hope again. I had hope that even if my circumstance never changed that I could carry it in a way that allowed me to accept what I could not change. I had hope that I could face these hard days and persevere no matter what. I had hope that I could figure out how to treat my leg and care for myself.
I gave up so much to get my health back.
I gave up most social events. I gave up things that I loved like watching my kids play their sports, and I didn't push myself to do things that I both loved and felt I needed to do like cooking and hosting. I gave up so much just to get my health back. For 5 months I took a back seat to life. Although I went on vacation and did family things, I had to give myself days to recover and rebound. I had to stop what I was doing on vacation and treat my leg 4 and 5 times a day while away. I had to miss going out to dinner with my family because after a few hours out in the hot sun and in the pool it was time to take care of my health so that it did not spiral out of control. I grieved the life I always wanted to live after cancer. I grieved and placed my hope in knowing each day was still a gift.
I will always want to go back to a normal life. I will always want to have a normal-functioning leg. I will always push forward and do what I need to do to get the very most and best out of this life I was given. My kids and husband reminded me that I am a fighter. They ask me if I will ever get better... I tell them getting better is about facing each day knowing that it's hard and not giving up. My kids are like cheerleaders. They comfort me when I am sad about missing events. My husband reminds me that what I do in a day to care for my health is more than what a person can handle and yet I do it daily. I can't lie and say I feel happy or that I am ok with this. I can say that I am a fighter and lymphedema has met its match!
Photo courtesy of the author.