Sorry it has been so long since I last posted! I have now been home for 7 weeks. I wish I could say I’m back to myself but I am currently “recovering from my recovery” phase. I guess all that sleeping I was doing the first couple weeks caused me to lose a lot of muscle mass. I can barely walk without assistance. Every day I am believing I will be stronger. I asked my parents for their exercise bike and it now sits next to my bed. Whenever I muster enough strength I drag myself on it. It’s the safest way for me to gain muscle without worrying about collapsing if my legs give. I am also very anxious to get rid of the aching (neuropathy) that has shown up in my hands and feet.
Today I have an appointment with the doctors where they will tell me what their suggestion is with chemo. Last time I talked to them, they said I needed more time to recover. They also said that because I have neuropathy symptoms, they want to refrain from giving me 2/3 drugs (the chemo suggested is a 3 drug cocktail for Medullablastoma), because 2 of them often give neuropathy symptoms and we don’t want to make the problem worse. They would substitute the 2 drugs for something else, but they are concerned about how effective those substitutes would be. They have been discussing
this for the past two weeks so we should have an answer from them. Additionally, now that I can barely walk they may not see me fit for chemo at all, and to be honest, I might not feel comfortable giving myself chemo in this state.
But I pray that today I will know what is best for me after talking to the doctors and for a peace that surpasses all understanding as we make our decisions on chemo.