I write this entry to purely educate people. If you know someone who is undergoing treatment for cancer they may mention a bizarre side effect called Hand and Foot Syndrome? Much like no chemo is the same, the side effects are vastly different as well. One of the side effects that go with my kind of chemo is Hand and Foot Syndrome. (Not Hand and Foot Disease-very different. Kids commonly catch Hand and Foot disease.)
Hand and Foot Syndrome causes red, peeling and a burned like appearance/feeling on the palms of hands and soles of your feet. The oncologist said all humans have layers of skin and the fibers that hold layers 1,2,3. This kind of chemo get erodes or loosens the fibers. I take Xeloda (7-8 pills a day). Fatigue worsens with second week as well. But tolerable.
I am on a 3 week cycle of Xeloda. First week-not bad. Second week-gets worse. Third week, I am off Xeloda but the side effects peak at this point. Right now I am mid-third week. The drug accumulates in my system. Even though I am considered “mild to moderate” with the side effects, this weekend is the worst I have encountered.
Currently, my palms and soles feel like I have second degree burns. I am hobbling or tenderly limping. Even though it feels so much better to do so, I can’t go barefooted. Your skin sticks to things (like the bottom of the shower or tile grout) and can crack, peel off or blister. I have trouble doing the following with my hands-washing dishes (anything hot), holding/gripping things, twisting ANYTHING, write with a pen (I can do it but it hurts) putting my shoes on or anything that causes me to challenge the dexterity. Even holding a book in one position for very long makes my skin hurt. Basically the skin is super tight, like skin that has healed from a burn. Almost a plastic look to it. I can not stretch my fingers out all the way or make a closed fist.
Walking around the block would immediately result in cracks (deep ones that bleed) or blisters. By the way, NOTHING works. I have tried at least 8 to 10 different balms, lotions, oils, etc. The only thing that has improved is I am not peeling much. I religiously use Vitamin E oil and am convinced this is the only thing that has lessened peeling. The pain, redness, burned feeling is still present. Don’t pitch me a cure-heard it all, seen it or tried it. Not helping.
I don’t tell you this to incite pity. Quite the opposite. I just want to explain why I look “normal” but I am not feeling normal. Because I am not losing my hair with this type of treatment, it misleads friends and family. Believe me when I tell you that I am still very much dealing with side effects-you just can’t see them. Today I lost in it in the church bathroom (right in front of a dear friend and my daughter who happened to walk in….ugh!) because I was in a lot of pain.
My husband and I joke that I am the great pretender. I haul butt across Waller County about 50-60 miles or more a day, running kids to practices, goats, games, etc. but then I collapse into a wailing puddle behind closed doors. (And no, until they put my body in the ground I am not slowing down. It doesn’t help the side effects anyway.) It isn’t every day but often. Today was one of those days- the wailing puddle part.
Part of dealing with cancer is physical limitation. I am limited in many ways right now. I shudder to use the word-handicapped. But I will be danged if I’m going to stay in bed all day or miss a baseball/soccer game with my kid. I am not going to miss watching them make their show goats drag tires, or helping them with their homework or a project. I am not going to stop making costumes or bake cupcakes. When you stop-you stop living. When my heart stops beating,I will stop.
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