I am back home again after the 12 day stay in the hospital. The first few days of immunotherapy really took it’s tool with the cytokine release syndrome. Extreme fevers with chills, like having 10 flues at one time. It was brutal. Home is better but it’s still exhausting. Every task seems to take hours and I have to sit down in between due to fatigue. The fanny pack they did give me is standard issue and ugly but hopefully it’s only temporary. This blimp treatment really bites the big one but if it puts me into remission so we can get on with the transplant then so be it.
Side note at least I showered today. With the borderline debilitating headaches it’s been exhausting just to do that even, Simple tasks are very difficult these days. I want to gain as much stamina as possible for the transplant but at this rate I am going to be in some rough shape. I would like to get more strength back since it’s all gone but if this state continues, I don’t really see how it’s possible.
So glad to hear you’re home, but sorry to hear how tired this is making you. I get it, it’s your body’s way of telling you you need to rest, but that’s hard if you have a lot to take care of. I know it’s hard, but try to remember how strong you are and how much love is surrounding you and Anthony, plus all the prayers and support. Keep fighting and remember, you’re almost at the halfway point, so keep your eye on the end goal and I know you will qualify for the transplant. Sending love, hugs and prayers!!