I think in the last blog I promised something about hair, and that was quite a while ago. I have to apologize because a)it's been so long...again.... and b)this isn't going to be about my hair..or lack there of. When I started this I thought it would be so fun and easy to blog on a regular basis and what I'm finding out is, sometimes it's easy to jump right on and try to be funny and show what's going on and other times I just plain don't feel like it. I can't think of something, or would rather be spending time doing something else or I don't know.
In one of my first blogs I talked about the difference in bad days verses bad moments and how most of the time it's moments really. That's still true. The majority of my time is positive, I enjoy meeting the new nurses and doctors and patients, finding things to do around here, making the best of all of this. And of course my home time is the highlight of my life. That never ever changes. That is why I am still going through all of this. So I can have a whole lot more of that. BUT this morning, I find myself having one of those moments. I woke up in one of those moments to be honest. I thought I'd blog about it as a way to let off steam and to show you the mindset in one of these moments for someone on this side of things.
My IV monitors, which I've been connected to for days now non stop, would not shut the hell up last night. They beeped about once every hour. Something would be kinked, or would run out. Then around 6 AM my lines were kinked again and the nurse thought taping them up on my chest might help to keep them in place. I was in the middle of sleeping so like most women, not to be too TMI but it is relevent to the story, I was "boulder holder"less lol. So I had my shirt up so the nurse could tape me, which was a little awkward but it needed to happen so whatever,when the PCA comes barging in without knocking and goes OH I'm so sorry and then preceeds to just stand there and watch... until she finally goes to empty my bathroom. Because yes, I still have to pee in a giant cup like thing so they can monitor my intake and output like a 90 year old in a nursing home. sigh,
Anyway after they both left, I layed there thinking for a bit. Why am I here? I mean I know what got my here. I had a fever Sunday night. My levels were low so I needed blood and platelet transfusions. So I went to the E.R. and they transferred me here. That's why I'm here. But while the cultures they took in Springfield grew something, the ones here at OSU have not. I haven't had a fever since and the entire time I have felt fine. In my logic, doesn't that mean whatever it is, is gone and I'm better. Why am I 45 min. away from the most important place in the world when I feel ok? I am wasting time. I am missing time. Well I expressed all of this to my poor but very understanding nurse practitioner and she must have thought I was going to go AMA or something because she promptly returned with the doctor haha. He explained that there are certain bacteria that can stick to the line I have in my body and with those so long as I am being given antibiotics it will look and feel like it is cleared up as soon as I am off of them I will get sick again. So they need to grow the cultures further to find out what it is and what antibiotic it is specific to. This made sense. I hated that it did, but it did. The hardest part is there is nothing I can do. Not about this, not about the leukemia. I really really don't like being helpless to a problem. I'm a bit of a control freak/fixer in that way. If there's a problem, let's solve it, figure out why it happened so that it doesn't happen again. There is no explanation. I have been doing everything right and yet here I am. Missing my family and in what feels like my own version of hell sometimes.
So after the Dr. left, I went down for some breakfast and a long walk. There was a really cute kid, probably about 1 1/2 ish. Reminded me of Lillia. When I went outside for a bit (the weather is actually nice today for a change yay!) I thought about time. When I am here and feeling healthy I feel like I am letting time pass me by. I feel great, I should be taking advantage of it and be spending it with my husband and daughter. Who by the way didn't ask to be effected by this. They did nothing to deserve having to drive to columbus, putting their lives on hold, missing time with their mom and wife. I kept thinking about how Lillia is going to preschool this fall and starting that little life and adventure. An how damn cruel it is that the last few bits of time I have with her before all of that are being spent in this place trying to treat something I have no idea how I got. And there is no one to be mad at. No one to blame. No answers as to why. Just more chemo, more fevers. More time away. But as I sit there in that funk I heard this voice in my head and later again by text that oddly enough sounded like my best friend ; ) It said, while you didn't ask for this and it certainly isn't fair, it is what it is. You can't change it, and certainly won't make it better tearing up on the bench outside of OSU lol. So you go through this now, give up some time now, so that you can see Lillia in preschool, and in all the other great things she is going to do in her life. Pick yourself up out of this ridiculous pity party and make yourself a better stronger person because of it. Keep perspective because this will end and life will move on again. So that's what I am doing now. Starting to feel better and get perspective. Because this could be a lot worse. I have been and am a really lucky woman and I am so glad I have a beautiful family and great friends at home helping me to keep perspective in moments like this and cheering me on to get better. So thank you all for letting me share. Take care and talk to you soon
Heather =)
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