March 8, 2012

March 8, 2012

It has been an interesting couple of weeks! I have had a rather tough time... But I am hanging in there! I will fill you in: About two weeks ago I began feeling as though I was coming down with a bug of some kind. Over the next few days, I developed the symptoms of your typical, not-totally-crazy-like-the-rest-of-my-illness, common cold. It is always a concern when I catch a virus because very rarely does it just disappear without complications. And so here I am! Still feeling awfully lousy. Thankfully the initial symptoms of sore throat, runny nose, etc. have gone away, but I continue to run low-grade fevers everyday. My temperature is typically around 97, so any fever feels high to me. And my stomach and back pain have intensified terribly! Ouch!!! We have had my central line cultured to rule out a blood infection and, thank goodness, it came back negative. This past Monday Dr. Wilson, my hematologist/oncologist, was kind enough to squeeze me in for an appointment. He believes that for now it is best to continue to wait and see what happens. My blood counts are low, my liver counts are elevated, but not to the scary point that they reach whenever I am in an acute HLH flare. It is possible that these fevers might be leading up to such a flare, but we are not going to pursue treatment unless that does happen. But on the plus side, there was an awesome selection of stickers at the hem/onc clinic that day! Ever since I was a little kiddo I have collected stickers from doctors' appointments, adhering them to the inside of one of our kitchen cabinets. Over the years my display has become very impressive, with a wide array of stickers from ponies to Spice Girls. When it comes to stickers, why resist? Let those child-like tendencies run wild! When I was at the clinic this week I made a haul of Disney princess and adorable puppy stickers for myself, and a Justin Bieber one for my dad. He's a big fan. But as for me? Well, I had that exact haircut when I was three years old. So I simply can't understand what all the hype is about! Also, my infectious disease doctor, Dr. Brewer, has made a curious finding. Dr. Brewer is a wonderful doctor, truly unique in that he is continuously searching for ways to find answers to my puzzling medical case. Every so often we will receive an email from him regarding new research or testing that we might want to investigate. Recently he had me tested for tricothecene mycotoxins, and this past week the results returned as positive. These dangerous mycotoxins are acquired through mold exposure. Yeah, it grosses me out, too! The thought is that I might have come into contact with toxic mold while at horseback riding camp. Remember the story about the horse who was assigned to me, and mysteriously died the day after I returned home from camp, quite sick myself? Of course this is all conjecture, though. Some people may be exposed to these toxins without suffering any known ill effects, while others become severely sick. As of yet, it is unclear how significant a role this is playing in my illness. Next Tuesday I will be having a CT scan and blood drawn for a particular test to determine whether or not this is a systemic infection. Treatment would consist of my receiving anti-fungal medication. The catch is that this treatment would take a toll on my liver. Dr. Wilson confirmed that my concern over this was valid, and that anti-fungals would send my liver into a hissy fit. (My words, not his.) So we face the conundrum over which would be worse: leaving the mycotoxins untreated for the time being, or upsetting my liver and HLH? Oh, I am just praying for God's guidance... And the wisdom to recognize that guidance whenever it is in front of me! But of course the past weeks have had their share of pleasure as well! Mom, Alice Eloise, and I have been watching a bunch of movies. I never read about the plot of a movie before viewing it... I find that this heightened suspense improves the experience. Call me a rebel. This habit, however, comes back to bite me every once in a while. Last week we were expecting to watch a romantic drama, but in actuality it turned out to be more of a psychotic drama. Yikes! But most of the time the movies are much more pleasant! I haven't been working in the kitchen in two weeks now, as I have been feeling rather frail. But I miss it so much, soon I will be back to cooking whether I feel better or not! But my friend Amy introduced me to a new hobby. Amy has been one of my very best friends since we were seven years old and we bonded over our common affinity for Lip Smackers, Build-a-Bears, and white rice. Anyway, recently we exchanged our Christmas gifts, and she gave me a loom knitting kit. One-handed hobbies are hard to come by, so I am very thankful for this! Knitting has been quite diverting, and has helped to occupy my time lately. I hope everyone likes hats, scarves, and socks. Chances are you will be getting them for Christmas next year! I am really enjoying the glimpses of Spring that have been popping up here and there. Alice Eloise and I have gotten in some short strolls the past few days! Walks with Alice are simply delightful. She seems to have a special way of making friends! But I love that Doodle so much, I shouldn't be surprised that others appreciate her charm, too! Until next time!

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