After 9 weekly trips to “Okemo” I was ready for the real deal. So I traded my beloved cold cap and IV-Benadryl for a helmet and a pair of twin tips and took joy in freezing my ass off on purpose. Kudos to my bossman for sharing his cozy cabin up at Mt. Okemo on a moments notice. Todd, I’ll remember you on Boss’s Day!
Clinical studies have shown that a bad day at the mountain beats a good day in treatment. So it was basically doctors orders. Besides I needed new material for my blog so I took pictures of trail names like “Challenger”,”Defiance”, even “Ledges” (for dramatic effect) hoping to make another ski/ chemo analogy but lately, its become impossible to relate the two.
Since my first infusion I have been tormented by a skin condition on my hands. This Eczema like rash affected the areas between my fingers and surrounding my joints and eventually the soles of my feet. I learned this special form of torture is called Hand Foot Syndrome and it is a side effect of chemo. This rash can make a very good day bad, if its not burning, its itchy and when not itchy its painful its basically something all the time, and never okay.
In addition to HFS I have developed neuropathy in my hands and feet which cause numbness and tingling in my fingers and toes. It has become difficult to open my own water bottles, unscrew toothpaste or sifter through the diaper bag and be able to get anything out. I am actually able to do less things on my own now, than I was recovering from either surgery. Simple tasks that involve any use of my hand muscles or force are difficult, but if I had to chose- this would be my least annoying symptom.
The most irritating side effect of all time has been an all over itchy sensation that comes in phases of itch attacks that last about 20 mins. This is due to nerve damage caused by chemo drugs and am told it will stop once the treatment is completed though I am starting to doubt I will ever have my body back. During these miserable phases I am unable to focus on anything except the urgency to scratch the affected area. Imagine 300 mosquito bites switching from your neck to your back down to your foot all at once. This happens at the most inconvenient times like when I am checking Alexa in for her 15 month pediatric appointment or waiting for a check at brunch. These panic attack- like phases make it difficult to to do just about anything and have become more frequent with each treatment. The palms of my hands and soles of my feet are most common areas of torture and because their at easy access these attacks escalate quickly. It gets so bad I am often unable to continue a conversation until I run my hands under cold water to ease the intensity. Last week, I removed my socks in the rice aisle of BJ’s because I didn’t know what else to do. I feel I could never describe the severity of this but i wouldn’t wish this upon anyone, ever. It is far worse than any pain I’ve ever experienced and more debilitating than 20 drains hanging from my body at once.
I am beyond frustrated and feel trapped in my itchy body waiting for the next two weeks to be over so I can finally begin to get better. Taxol the culprit of these side effects is coming to an end and I will continue Herceptin for the remainder of the year. I don’t even care about more IV’s at this point. Benadryl and Ibuprofen provide brief but beautiful times of relief and without this magical cocktail I would have checked myself into a mental institution weeks ago. Though there’s still time!