Monday, October 12, 2009
"Cancer sucks 99.99 percent of the time.
"Cancer sucks 99.99 percent of the time. But if you want your pool cleaned the next day or you want to go to the head of the buffet line, cancer rocks. Yeah, .01 percent of the time, having cancer is a real plus." -- Robert Schimmel in Cancer on $5 a Day* (*Chemo not included)I have been reading this book and it is great. It's a short read (less than 200 pages) and chronicles Schimmel's battle with non-Hodgkins Lymphoma. He is a rather crass comedian so some of the humor is on the harsh(er) side but I dig it. The memoir is both poignant and hilarious. He also lost his son to cancer 8 years before his diagnosis so he's seen cancer from many aspects. Highly recommend.In other news, Charlotte and I had a busy day. I had a part recalled on my VW so we had to trek over to the west end to get it fixed today. The guy at the dealership that checked us in saw Charlotte curled up in my arms (not wanting to be put down) and said, "Oh, someone's sleepy today? Yeah, my kids didn't want to get out of bed today either.". The guy meant well but all I could think was, "Dude! You have no idea." She had her hood up on her jacket so it was kind of hard for him to see the "cancer kid" hidden underneath all those clothes. This is just one example of the funny (funny-strange) ways that cancer effects your day-to-day life that you really don't think about until it happens to you. I mean, before this, I would never even THINK that a kid holding tight to mom for dear life was doing so because she was exhausted from chemo and wanted nothing more than to curl up and go to sleep...because of CANCER. So it stands to reason that other people would not make that assumption as well. And yet, you want to sit there and scream, "No! You idiot! My kid has cancer and gets toxic chemo medicines every week (every day) that drain her system of her last ounce of strength! She can't walk normally and doesn't have normal balance because her THREE brain surgeries have damaged her nervous system and all her coordination. Possibly permanently. She has a compromised immune system that makes any little germ a possible source of infection. She can't even get her regular immunizations because her immune system is shot. She hasn't been to preschool in almost a year and she hasn't had a normal playdate with another kid in months. Don't even THINK about telling me that YOUR kids are like MY kid. Don't even THINK about telling me how you can relate!!!"But I didn't say that. Thought it. Didn't say it. We all have our issues. Anyway, we went from the VW dealership to Occupational Therapy where Charlotte endured 45 minutes of clinical torture. She started off ok but had a really rough time and wanted to call it quits less than 30 minutes in. We took lots of breaks and gave her lots of encouragement. Still got the heartbreaking tears that made me want to cry myself!I grabbed a quick bite to eat on the way to the clinic. Charlotte munched a few crackers and a bit of cookie. Once at the clinic, they looked her over and got my report from the weekend. Amazingly, she didn't lose any weight but I am sure the overnight fluids helped that. We talked at length with the NP about the shakiness, lack of appetite, and fatigue. The best conclusion that we could reach is that Charlotte probably has Secondary Somnolence Syndrome which is a fancy term for an intermediate after-effect of the radiation that hits (surprise!) 6-8 weeks after the last treatment and (surprise!) causes fatigue, nausea, vomiting, and anorexia (lack of appetite/eating). So, that probably coupled with the effects of the Velcade is the best explanation for her current situation. It is expected that these symptoms will dissipate in about 2-3 weeks. Sometimes they will give steriods to help with the symptoms but they don't really think that is indicated in Charlotte's case. Her numbers were actually halfway decent so she got her flu shot (minimal drama), got her Velcade, and we were sent on our way till Thursday. They're going to order a few more packs of IV fluid to have at the house just to keep her sugar and hydration up. They did also check her blood for other levels such as thyroid, vitamin D, etc. just in case but so far everything looks ok.So that's pretty much it. She fell asleep on the way home and is currently resting in her "downstairs bedroom". I may seize the opportunity to get some paperwork done.Rachel
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