Our lives have changed a lot in the last 6 weeks. A lot. As to be expected I suppose. We are living day by day, sometimes hour by hour. I wanted to make a list of these changes so that in 10 years when I look back and read about this, I will remember everything. I don't know if cancer is like pregnancy in the sense that the more time that passes the less you remember how miserable it is. :) Here are the changes that come to mind: 1. We are SOOOOO much more sanitary than we use to be. We are living the way we all know we are suppose to be. You know: not sharing cups or spoons, washing our hands like crazy people, using sanitizer after anyone sneezes, washing sheets and pillow cases about twice as often... things like that. (Am I totally ratting myself out here? I promise I'm a clean person!)
2. We never go anywhere. Never. Ever. Carter leaves the house to go to chemotherapy. We quit piano-prep classes. We quit basketball. We quit school. There is only one friend at this point that Carter is allowed to play with. They adore each other and our middle kids (both girls) are best friends as well so it works out well. They see each other about once a week as long as everyone is healthy. But at the same time, this friend is a girl and I know occasionally he misses boy time. Legos and shooting. Things like that. Poor kid.
3. No vacations. We cancelled our trip to San Diego (we were suppose to leave a few days after he was diagnosed.) We cancelled our trip to Arizona. We don't know when we will be traveling at all. Even when he gets the go ahead to travel, will we fly? I don't know if he'll be ok on a plane with all that recycled air. Sick.
4. I'm the nagging mom. I have to ask other people before they cross the threshold of our home if they have so much as a stuffy nose. I feel SO ridiculously stupid but there comes a point where you just don't care anymore. It's not worth your kid getting sick and ending up in the hospital because someone wants to bring a snotty kid over to say hi. (Even though it's their way of showing support.)
5. We go to the hospital if Carter has a temperature higher than 101.5. No questions asked. They start him on antibiotics before they even have blood cultures back. This happened on Wednesday night. Cultures came back clean but he had two doses of rocephin anyways. This also resulted in two extra trips to the oncology clinic which took us to a grand total of four days last week spent in some sort of medical facility. Awesome. We talked to Carter about maybe getting sick during the day next time so I'm not sitting on that uncomfortable chair in the ER until 1am. He told me that this is when the doctors told him to get sick and that he couldn't help it. :) Goof. One good thing about him having cancer is that we didn't even have to sit down in the waiting room. We went right up to the counter, told the girl that he's immune comprimised and she opened the door into the back. We went right to his private room and hung out there. MUCH better than a normal ER trip.
6. He knows things he just shouldn't as a 5 year old. He knows what blood pressure is. He knows about his reflexes (They check them every time we go to chemo). He knows to cover the toilet after chemotherapy because his chemo pee will splash onto the toilet and make other people sick. (We're still working on getting him to actually flush the toilet.) He knows about white blood cells, what they should do, and that his are sick. He knows about cancer, specifically leukemia. He knows his hair is gone right now but it will come back. However, he does NOT know that cancer can be fatal. We feel no need to tell him that.
7. We have more hats than any hat store around. He loves his hats. He wears them like shirts. Changes them every day. It's pretty cute.
8. I have turned into a completely reclusive person. You know that saying, "If you can't say anything nice..." Well, I've changed it. If I can't say anything positive, I don't say anything at all. I try my darnest to be positive and upbeat. Normally I do fairly well. But not always. As I've mentioned before, sometimes I just want to feel sorry for myself and my family. I just want to whine and not get dressed in the morning. Sometimes I just want to say, "I don't care about your stupid problems!!! I am completely self-centered right now and I ONLY care about my family so SAVE IT!" (To date I don't think I've ever acted on that instinct... but be forewarned. :)) (I should add that I don't feel that way towards close friends... it's just people on FB that I'm not really even friends with anymore, you know?) BUT, normally, I'm good. Normally I'm a happy mother to two very healthy boisterous little girls and one on-his-way-to-getting-healthy little tired boy. And I wouldn't trade it for anything in the world.
9. I rarely (RARELY) answer my phone anymore. I just like people to leave messages. I was getting so overwhelmed with trying to keep everyone informed that I asked Bryan to handle his family and I handle mine. That has helped a little bit, but there are still friends. These friends are awesome, wonderful, old friends that are calling out of sincere concern. That's why I have this blog. So that they can check up on Carter, I have a journal, and it saves my sanity a bit. (For the record, I'm about a million times better with texting.)
These changes are just part of our every day life now. It's starting to get "normal". I am so grateful for our new normal. I'm so glad he's responding to the medicine he's getting. I'm grateful for the power of prayer. I know there is a Father in Heaven who loves my sweet little family dearly and while we don't understand every decision made, He sees the big picture. And even in the finite picture we see, it's a good one. This will end. We only have three years and two weeks left! Woot woot!! :) (Barring nothing nuts happens and his counts stay okay.) I feel so sad for those people that don't believe in a higher being. Someone that sent us here to be tested. Someone who loves us unconditionally. Those people are missing out big time because change happens. Weather you're ready for it or not. It comes. Sometimes you see it coming (in the form of a tummy- and butt- getting bigger by the day) and sometimes you don't. But all change has it's silver linings. Sometimes you just have to check under every rock and all the nooks and crannies to find that silver lining but it's there.
