March is lymphedema awareness month. This is my story and my opinions. Lymphedema is different for all patients. I have never heard of the word lymphedema until the doctor was discussing it with me prior to my double mastectomy. I now define it as swelling and fluid buildup in affected extremities. The doctor let me know that if she needed to remove any lymph nodes that could cause lymphedema. Of course, I went home and researched what lymphedema was. It was one of my main concerns going into the double mastectomy. The first thing I asked when in the recovery room was if they took my lymph nodes out. I found out later that I had 10 lymph nodes removed. I already knew it that was a definite possibility since I had found my cancer by feeling a lump under my armpit. Please remember the lymph nodes area under your armpit when doing your monthly breast exam. What I did not know is how lymphedema would affect my life from that point forward. Most people don’t even notice my lymphedema until I let them know. I notice it by the heaviness and swelling. Some days that arm may be swollen and the sleeve of my shirt will be so tight. I cannot have blood pressure or blood drawn from that arm. I can’t wear sleeves that are elastic on that arm.
Lymphedema is a chronic condition. My first lymphedema scare was a couple of days after my surgery. My sister and I took Coco for a walk. While walking, another dog came running out. I accidentally held onto the leash instead of the handle. This resulted in a cut on my hand. The first thing I thought was that was stupid. The second thing I thought was unexpected. I had cut the same left hand which had lymphedema. I didn’t know what to do. Of course my mind went to the worst case pictures, that I’ve seen the table they got infections due to lymphedema. At first we thought about going to the emergency room, but instead we called the on-call doctor. He wrote me a prescription for an antibiotic to make sure I didn’t get infection. Now, these days I’m not overly cautious as I was then. I just make sure to monitor any cuts or bruises for signs of infection.
The cancer center help me get an appointment with the lymphedema doctor. He was the first doctor there for lymphedema. He was just a resident. I think I knew about as much about lymphedema is he did just by doing just my research. He helped make an appointment with the lymphedema physical therapist. I went through several months of physical therapy learning manual lymphatic massages , exercises, and several other techniques. I have to go back to the physical therapist periodically when my arm swells too much.
Over the course of years, I have learned some of the things that can cause a flare-ups. For example for me, staying outside in the sun for extended periods of time, over use of my left arm, and too much salt can cause my arm to swell more. What I believe is important is monitoring and controlling my lymphedema. I wear a compression sleeve daily and do manual lymphatic massage daily. I also tried night wrapping but that did not help me.
Lymphedema medical options have increased from lymph node transfer, lymph node bypass, and performing lymph node bypass during mastectomy and lumpectomies. Lymphedema is getting more attention in recent years due to exposure by stars such as Kathy Bates, Hillary Swank, Joan Lunden and many other lymphedema patients. Now, most surgical oncologists are sending patients that have any lymph nodes removed for a physical therapy evaluation.
For additional information about the options available,
God is with us in our times of pain and need. Keep your faith in God! It is easier during good times but we must remember to do something the same during bad times well.
Romans 8:17-18 And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering. Yet what we suffer now is nothing compared to the glory he will reveal to us later.