Past regrets make present memories

When I was younger and my mom was battling cancer I remember that she used to ask me all the time to rub her legs before bed. She would let me "stay up late" if I did. I was 10-11 years old so naturally, with older siblings able to be up late, that was exciting on a school night. She would sit in her maroon recliner, as she always did, and I would sit on the floor with her legs over my shoulders and, with her favorite lotion, I would sit there and rub her legs for maybe 1/2 hr or so. After a couple weeks I got sick of doing it every night and refused even though she would still ask. Even with the pleading I remember on her face I turned her down. Now I know that she probably had deep muscle aches that were soothed by my massaging, but back then I just got tired of doing it. Life has literally come back full circle as my daughter now begs me every night to rub her legs. Even before Lily got cancer I used to think about my mom and the regret that I had for not sitting there EVERY night and massaging my moms legs. I still think how selfish I was for not doing it after every thing she did for me. Now, with Lily, and dealing with my second experience with caner, I don't want any regrets, but still sometimes I find myself rubbing her legs half-assed, or making excuses to leave the room at bedtime quickly. Even as I sit here at 1:45 am, I am having to stop typing every 2-3 minute as I hear Lily randomly writhing in pain yelling "NO, NO" because her legs hurt, while she is laying on the couch on the other side of the wall. My first instinct is to be annoyed that she still isn't asleep, but this is exactly why I am making this post.  The point of  this confession is I'm just trying to remind myself (and by typing it out it  makes it real; no excuses) that when I see someone I love hurting, suffering, sad, scared, worried, or whatever, I need to allow the world around me to fall away and focus on just them. Nothing else should matter but what I have right in front of me. I will say this to everyone, don't let regret haunt you over simple things. Be in the moment and love unconditionally. I have to believe it's more than worth it.

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

Time is deceptive

Time is a crazy thing. It can seem to go fast and seem to go slow, but in reality never changing its rhythm. Its the same for everyone no matter where you live in the world or what language you speak. Its our planets universal connection, that like it or not, everyone must follow. But even still, with its constant steady ticking, why does it sometimes seem so fleeting? Like you just don't have enough time?! Days to me seem to go by so slow yet weeks go by much faster. I live my life day by day but each day just seems to drag on the same way and I'm always so exhausted! But even still I just feel like I have to spend every moment enjoying my time with Lily and Makinlee. Makinlee is 11 mo old and I honestly feel like I've only been around for 5 months of it. Time; it really is constant, yet ever changing.

Lily saw her Dr. on Thursday and got a spinal tap and chemo in the spine, (they call it a lumbar puncture) as well as 2 different IV chemos. They have been upping the dose of  chemo every time so she gets a little stronger dose each appointment as long as her counts are good. I'm starting to see now that this last dose of chemo is really taking its toll on her. Its probably the first time (other than steroids) that she has gotten chemo and I can really tell how tired and sick she feels. She is still all smiles and tries to run around and play as much as she can, but I can just see it in her eyes how sick she feels. Her head aches, her muscles ache, and she has a very short fuse. Lots of tired fits and crying. I know that may sound pretty normal for a 3 year old but its different, its a whole new level of exhaustion. Overall tho, she is doing really well. Her blood counts and appetite have been more steady, and she hasn't been super sick (throwing up), just really tired. The one chemo she gets does make her susceptible to ulcers and mouth sores and Friday morning she woke up with a dime sized ulcer on her arm. That was a little alarming! I'm keeping a close eye on it but it doesn't seem to be infected or anything so that's good. We know that all her treatments have side affects. She goes back in next Monday for the IV chemo and then 10 days after that we start the next phase. I've been given a little info about what to expect for the next phase but no real details yet. We will find out more next week. 

I think that the main thing that I need to remember for my lesson this week is to be grateful for the time I have. Just trying to live in the moment but planning for a long future with my family. Life is short even if the days or weeks seem long, and I've been reminded several times in my life that your life could change forever in an instant.