Wednesday, March 11, 2009

What life is like

A few people have asked what is life like for me. Well, I am going to answer it with my routine. I think everyone knows that I have a routine when it comes to chemo. I will spare you that. What I will tell you is my routine outside of chemo. About five days after my chemo treatment I settle into this.....I have to take a sleep aid to get used to sleeping through the night and on the boys' schedule. Part of this is because the steroids screw up your sleep and part of it is because I don't have a schedule when the boys are not around. The boys are up at 6:30 every morning, so you need to go to bed early to get your sleep in. I find that I do better when I drink one meal and eat solid food only twice during the day. So, I substitute something like an instant breakfast for one meal. I monitor my caffeine intake because that stimulates going poop. If this is too much information, stop reading now. I get in the shower and clear out my sinuses. It is a combo of blood and snot. Big chucks of scabs come out because one of the new drugs dries out your sinus so bad they bleed - every night. I check my pillow case for blood and if decide if it so bad that I should change them. For those of you that know me or lived with me, my tolerance for this stuff has changed - A LOT. I go downstairs and boil water on the stove to get some moisture in the air to help my nose stop bleeding. Once one starts, it is hard to get it to stop especially when it is dry like it is right now. I monitor all my meals by soluble and insoluble fiber. When I poop, I either have to take a sitz bath or use a very special and hard to find lotion to return the ph balance to my skin. Yes, my skin DOWN THERE. FUN AND VERY SEXY. In the morning, I may have Mommy and me class which we miss more than we go, but that is Nolan's fault. Why is that kid always sick on Tuesday? Or, we may have Preschool pick up or drop off although that is taken care of most of the time for me by Grant, Grandma, or Grandpa (which is exciting for Mason because of the truck). Or, sometimes, I actually venture out. Most of the time this is with Karissa or Mom, but sometimes by myself and the boys if it is close, like downtown Kent. Did I mention that if it is really cold out I have to cover my mouth and nose when I breathe becuase the cold locks up my throat? Another fun side effect of the drugs. We RARELY eat out. My system can't handle fast food very well and Nolan is a piece of work in a restaurant. In the afternoon, the boys and I rest. Nolan naps everyday, Mason every other, and while I may not sleep, I do lay down for 45 mins EVERYDAY. When we get up there isn't much time so we usually watch a DVD program or play with the train set before dinner. Now, there is dinner which I don't make, I assemble. Because of all the the amazing support in our life, dinner comes to us and on the days it doesn't, I am a master at assembling pieces of left over dinners. I don't have many eating requirements right now, I can balance it usually by what comes, and I love the variety that arrives through the door. It is a little like Christmas three times a week. I always have enough food for us and, on occasion, I send dinner home to my Mom after she has watched the boys all week. The only time I don't eat much is chemo week or if I have mouth sores which I do right now. THEY HURT like a mother and they last for about a week. Luckily, I don't get them often. There are people that have them the entire time. I pray for them. Daddy and the boys then play for a bit and then it is off to bed or bath night. The boys wear one outfit a day unless is preschool in which they are stripped when they get home to cut down on germs. I do do laundry every other day. When the boys are in bed, Grant and I have a few moments to talk or watch one recorded program before I am off to bed. Getting ready for bed is washing my face, filling up and turning on my humidifier (Sarah - you thought you let me borrow it for Mason!?!?!?! Well, I am sure using it more now!!!), carefully brushing my teeth because my gums ache from chemo and mouth sores, putting Aquaphor (super cream) on my hands with a mixture of a very little amount of "Hoof Maker" Lotion my girlfriend gave me. (Her last bottle and they don't make it anymore!) This saves my hands and fingernails which I still have and some people don't. I pray for them too. I read a chapter of my book for book club and go to sleep. I usually sleep well, but there is the occasionally morning I am up (like this one) finishing up a post, covering the boys because it is cold, or eating a little bit around my mouth sores because I couldn't eat all I needed at dinner. I hope that covers it. My "normal" is so normal to me, I don't realize that it isn't until I write it down. It is funny because a lot of people that are first diagnosed talk to me about what there quality of life will be or they complain about the doctor's not telling them that the quality of life will be lowered so completely or they just don't like living this way. I concur, but the difference is that they have a life to worry about. Cancer doesn't mess around. It plays to win and it doesn't much care for your quality of life. The good news is that you are ALIVE. Take care, Ang

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