Last year I wrote a very popular post, Lymphedema And How It Changed My Life. It went viral…well, as viral as a lymphedema post was going to get. It resonated with a lot of people. I wrote about how angry I was at getting lymphedema after being diagnosed with breast cancer and going through hell to get it out of my body. I wrote about how uncomfortable it made me feel in my own skin; how ugly I found myself. I wrote about how its very presence was a daily reminder of my cancer and the fact that it could always come back to my life in a terminal form. I wrote about how sometimes I thought I would rather not live at all than live with lymphedema for the rest of my life.
I want to say that a year later all is well. I want to say that a year later I’ve come to terms with this condition and the fact that it’s never going away. I want to say that it no longer reminds me of the cancer that is in my blood stream right now, hiding, sneaking in and out of my organs. I want to say that a year later, it’s under control. But I can’t say these things. I just can’t.
It’s a year later and I’m still pissed off. I’m pissed that I have to take time out of my week, twice a week to keep my lymphedema under control. I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping that soon they can get me to the point where I don’t have to come so often. I’m pissed off that I have to take time out of my day, nearly every day to pump my arm. I’m pissed off that I have to go to sleep every night with my arm wrapped. I’m pissed that I have to roll my wraps every night. I’m pissed that when I look in the mirror, one of the only things I see is my big arm. Nothing else. I’m still pissed off that this was done to me. I’m still pissed off that I didn’t get the care I needed at a time when this could have been kept under control. I’m pissed that I don’t feel beautiful.
There are some positives. This year I learned to wrap my bandages myself. While I hate doing it, it gives me a sense of control. I’ve been able to get swelling under control that way. I believe that with hard work the swelling will decrease. It already has. It’s just take a super long time on me for some reason.
I also think that there are a lot of advances happening within the medical field. More and more doctors are starting to understand this condition and are acknowledging that it’s a terrible condition to live with. There are more studies and trials happening. They are perfecting the lymph node transfer and other surgeries (although I don’t feel confident enough in the science to do it myself yet). There is hope on the horizon. I truly believe that there will be some real help for men and women like me in my lifetime. Maybe not a cure but something that will make living with this condition so much easier.
I struggle every day knowing that I have to live with lymphedema the rest of my life. I get depressed often. But at the same time, I have hope. I have hope that science will make advances. I have hope that my body will finally cooperate and that there will be a turning point in my care. I have hope that I will get this under control.
Maybe not today. Maybe not tomorrow. But maybe next year, on March 6, World Lymphedema Day, I’ll be writing a different blog post. Maybe I’ll write about how I don’t hide myself. Maybe I’ll write that I don’t think about my arm and cancer all day long. Maybe I’ll write about how I feel like I can live my life confidently again. Maybe, just maybe, I’ll be able to write about a major medical breakthrough.
One year…I can do one more year.
March 6, 2017 at 5:05 pm
So sorry you have to live with this. The constant reminders are horrible. At least you can find some good time in between them.
March 14, 2017 at 10:37 pm
I definitely do. Thanks for reading!
March 11, 2017 at 3:50 pm
The struggle is real. I am sorry you’re having to deal with the collateral damage not everyone likes to talk about. I am glad there seem to be more awareness about this condition. I’ve been lucky so far, but I know I am still at risk of developing this. Like you, I really hope treatments improve and patients are able to live better quality life. I wish we were REALLY done with cancer after treatments end. But sadly, we know better. xoxo
March 14, 2017 at 10:38 pm
It really sucks. It’s a daily thing which makes it so hard. You are very lucky to not have developed it and I hope it stays that way. Thanks for reading!
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