I have had secondary lymphedema since 2005 after having treatments for Inflammatory Breast Cancer (IBC). I had 4 months of bi-weekly chemo followed by a mastectomy then 33 rounds of radiation. I was originally diagnosed in March 2005 and I was done by December 2005. I had lymph nodes removed and what few were left were damaged so sometime after my surgery, around 4 months, I discovered my arm swelling. I had no idea what it could be and I even thought it was my imagination, with chemo brain and all but it kept swelling more with each day. I ignored it for way too long and finally I went to see my oncologist who only said to me “you must get into physical therapy NOW.” After many questions he finally said the word ‘lymphedema’ to me, nothing more. He would not tell me what lymphedema is, only that I must get help fast. At the time, I was a live-in caregiver for an Alzheimer’s patient. There was no way I had the time to get involved with something so devastating but if I didn’t get help, what would happen?
When I got home, I went straight to my computer and Googled “lymphedema.” I must have read a load of information over several days trying to let it sink in. Finally I made an appointment for physical therapy. I was beyond devastated and overwhelmed with learning to bandage, learning how to do self massage, not to mention the cost of it all! I tried for 2 whole weeks to manage all this in addition to taking care of my patient as well as 4 dogs and a huge house. I dropped out of therapy. I just couldn’t do it. The timing was all wrong. So, another year came and went, then another 6 months before I resigned from my job. It was now time that I had to take care of my arm, take care of ME for a change. So I began PT again and found a great Lymphedema PT who taught me everything. I was in PT for more than a year. My therapist Jill was so helpful to me and I thanked God for sending me to her every day. She taught me in ways that I could understand, was patient and firm too when she needed to be. We became good friends.
If I could have had a choice between breast cancer and lymphedema, I would absolutely choose cancer. Lymphedema is incurably painful and takes up more of my time than anything else I have to do each and every day. It seems my life is made up of laundering, rolling and applying bandages, self massage & exercises. It has to come first no matter what. If I plan to go out of town it’s a job to remember to take everything. I have been on SSD ever since my cancer diagnosis. I am unable to hold down full-time employment because of lymphedema and peripheral neuropathy from chemo drugs. So I am left with 2 disorders that have no cure, lymphedema controlled by bandaging, massage & exercises and the other by narcotic medication that is hard on my heart. Breast cancer was easy…the other problems are life-long.
Throughout it all, I am thankful I am here although it has taken a lot of prayer and soul searching to feel that way. There were many nights I asked that God take my life because I was afraid I might. God had other plans for me and I’m eternally grateful.
So please, get this bill passed through Congress. So many people would be helped from it. The cost of supplies is devastating to people on fixed incomes and they, like me, have to make decisions each month on whether to eat or buy new supplies. I am so lucky that my lymphedema is in the upper body. I can only imagine how hard it is to live with lower-body lymphedema.
Please pass this bill.
