Grab the bull by the horns

This past couple weeks has been a little bit of a whirlwind. Nothing super significant has happened but just emotionally with me. I know this sounds selfish but sometimes I almost feel like this is harder on me than Lily. I admit I have been a little depressed lately. Its the monotony that's so grueling. I always thought if I was a stay at home I would be the mom that did stuff; Library, park, swimming pool, whatever. Now I almost feel like I cant do that stuff. How can she wear a face mask to protect her against germs in the swimming pool? Why expose her to unnecessary germs at the park? Besides that, sometimes not only do I feel like she is too exhausted to do all that, I'm too exhausted. So, all that considered, my life amounts to the constant cycle of everyday being the same and the depression that follows. I mean when the highlight of your week is chemo, just because its the only time you get out of the house, then we have a problem. Well I was sitting at home the other day and something kinda switched in my brain. It was really weird but something hit me and I just had this moment that was like "Hey, this is your life. You can either spend the rest of these 3-5 years in a state of depression and self pity or can decide to step it up and LIVE in spite of everything." So I'm actually feeling a lot better. I feel like I've moved on to the next phase of all this. I'm not actually sure what that phase is but it seems to be in the realms of grabbing the bull by the horns and holding on for whatever wild long ride he gives me. I also learned something else recently about my situation. Its been almost exactly 4mo since Lily got diagnosed, which isn't really that long ago (but it feels like ages), and I think I have finally accepted that this isn't some sick joke that I am going to wake up one morning and realize it was a dream. I've gotten to the point where, for the most part, its not constantly on my mind, but I have moments where I look at her and can see it. But mostly, I've accepted it and don't think about constantly anymore. What's a little shocking for me is when people that I'm close to, but see very often, talk about Lily, I can see the pity and sadness in their eyes. Then I remember again that this isn't just something that everyone goes through, this is a big deal. Then the shock and worry kinda comes back for a minute as I remember the seriousness of what we face. I cant blame them, Its all part of every ones grieving, and I'm certainly not the type to not talk about it, but it is shocking.

Now on to Lily. She had her last round of chemo for this phase back on Monday. Her counts were good, which is always good news, so they upped the dose of chemo as planned. I can tell with each increased dose it wears her down more and more and for longer and longer. I have also started to see some side affects from the actual chemo and not just 'the other drugs'. She developed an "ulcer" on her arm after the last treatment that still hasn't gone away. It looks just like a cigarette burn on her arm; its a perfect round circle right below her elbow, that boiled and blistered like a burn. Its healed some but not fully. I have seen a couple others pop up in other places but none have stuck. She also mentioned after chemo this time that her eyes "see red." They look different to me now, almost yellow, so I'm going to call tomorrow and maybe swing by MSTI for peace of mind. Mostly she is doing really well though. We haven't had any throwing up or refusing to eat, no unplanned hospitalizations since diagnosis, and she has responded well to treatment. Most importantly she still has mostly maintained her happy, carefree, and bossy attitude. :)

As for whats coming next we have been given some more info. Next Wednesday she goes in just to have her blood counts checked and if her blood counts are good then, then we will plan to start 'delayed intensification' a week later. That includes (but is not limited to) more steroids, oral daily chemo, several different IV chemos a week, more spinal taps, a planned hospitalization,  and IV chemo that I will have to administer here at home. I still don't know all the details but that will hopefully start in about 2 weeks. They told me up front that she will probably be sick, drop in blood counts, most likely need a blood transfusion or two throughout, and that her hair really should go. So for now we are just trying to live as much as we can until life gets tough again. We really do appreciate everyones support and generosity through this. Its been so comforting to have great friends and family. We continue to ask for prayers and well wishes to get us through this next phase. I also just wanted to let you now that if you wanted to buy a t shirt to support Lily my brother designed a shirt that you can get,. Here is the link. They really do look great on and who wouldn't want to rep Lily! https://www.booster.com/orangeforlily2