2/7/14 Update. Note posted to Facebook group of friends who volunteered to come help wrap.
“Hello friends who volunteered to help me wrap. THANK YOU! I love you all! Even if it didn’t work for you to come I so appreciate knowing you would have. Yesterday I picked up a custom compression sleeve that I don’t have to wrap and can put on myself! Thank god!! Just in time as I was losing my mind and had a very stressful week with new testing. My treatment plan has changed and I’m glad. I will not have radiation now. I will have surgery to exchange the expanders for my new boobs in a couple weeks. I could still use help with food for now as I can’t cook well with my giant Pillsbury Doughboy hand. Pretty cute, huh?”
2/6/14 Update. Thank you to those who came, or offered to come, help wrap or brought food. I’m sorry I couldn’t get it more together to use all the help you offered. It’s been very difficult to schedule times as I had to wrap and rewrap at odd times of the day and night depending on the swelling and when the finger bandages came off. It’s so archaic I can’t believe it. Today a compression garment finally arrived. I’m supposed to just wear it at night, but for now I’ll wear it in the day as well as it does not need to be wrapped. It’s a huge puffy sleeve and glove combo that makes me look like a blue Pillsbury Doughboy. I hope it works. I still may have to wrap the other way in order to use my fingers during the daytime, however, so I appreciate continued support. It has been a really rough week and all of your support, even from afar, is appreciated.
1/26/14 There is an online calendar to help me wrap twice a day for the next 2 weeks if you are interested in signing up for a time. Email using the contact page for more details.
1/19/14 Worst side effect so far. Yikes, I wasn’t prepared for this one after already going through chemo and surgery. I need friends to sign up on a shared calendar to help me wrap once or twice a week. I wrap it, you help tape and roll bandages. No training necessary it just requires an extra set of hands. I’ll have good coffee or wine for you! The condition will get worse if not managed now and my radiation therapy has already been delayed until early Feb. due to this. Email me for more info. firstname.lastname@example.org ** I’ve been struggling with lymphedema in my left hand for the past month. It’s has gotten worse and I now have to wrap a short stretch “cast” from fingers to shoulder each day. Alone this takes me about 2 hours. I often have to rewrap it 2 or 3 times per day, meaning I sometimes spend 6 hours wrapping. I should wear it 23 hrs/day. I am able to work PT now with the help of an assistant. I can only type with one hand, however, which is why I’m not blogging much. More details on lymphedema and recovery from surgery and current reconstruction process is going as soon as I can type again.
Lymphedema wrapping is consuming my life. My mother came for 2 weeks to help get it under control. We have finally found a wrap for the fingers that will stay on, not be too tight and turn my fingers black and keeps the swelling down if compression is applied 24 hours. Most days I’ve still have to rewrap between 2-3 times. I’ve been fitted for a custom glove which will not arrive for 2 weeks but will hopefully keep the swelling where it is for the time being. Until then I have to do this archaic form of compression wrapping to hold it down, or my hand could be permanently deformed. Everything with radiation is still up in the air. I’ve requested that all of doctors, as well as several others, discuss my case at their conference this this Wed and Thurs. I’m wondering if reversing the order of my future treatment to have the expanders removed and the permanent breast implants put in first to see if that reduces the swelling before I have to decide on radiation which could make the lymphedema even worse. This is what my wrap looked like last night as we are not in the experimental phase of doing whatever it takes to keep the compression tight.