November 10, 2012
It is happening... My elfish tendencies are becoming ever more prominent with each passing day. While it is true that I possess an abnormally high level of holiday cheer the entire year through, once the cold weather kicks in, that jolly spirit is amped up a few notches. Last week I was wearing shorts one day, and the next day I was donning my warm and fuzzy hat that resembles a polar bear. People may wonder why my hat appears to have been intended for a toddler, and, if I cared, I would make it known that I am a bit more sophisticated than my attire might suggest. In fact, I am sophisticated enough to realize that wearing two pairs of pants on a nippy day is far more snuggly than one. And the other night ago I had the luxury of cozying into my new flannel jammies, delighting in a crackling fire in the fireplace as I was crooning along to some Christmas ditties with Bing Crosby, all the while baking cookies for Dr. Wilson and the nurses at the clinic.
Ah yes, speaking of doctors, isn't that kind of the point of this whole journaling thing I do here? To keep you updated on my medical stuff? Okay!...
Well, I am actually rather exhausted as the past couple of weeks have entailed quite a few trips to St. Louis for appointments. First up, I saw my GI specialist, Dr. Rubin. It was a pretty routine checkup. I love Dr. Rubin, she is wonderful, but at the moment we seem to be at a standstill when it comes to appeasing my GI symptoms. Of course my gastroparesis is the most complicating factor when it comes to the gastrointestinal aspect of my illness, but additionally my reflux has grown to be a major issue. I have maxed out on the acceptable dosages of medications attempting to control this. Dr. Rubin thinks it possible that I am dealing with more than acid reflux, and perhaps something else is causing these symptoms. But to address that, I would need surgery, which may or may not help, and could worsen my digestive tract paralysis. So we are avoiding that route, at least for now! In the past I have had testing done in which the results were suggestive of gallbladder problems, so Dr. Rubin ordered an ultrasound to be certain that this wasn't causing my reflux. The following week I returned for this scan. I haven't even heard the results, so I am assuming nothing overly crazy is going on in there!
This past Wednesday made for a rather long day in the hematology/oncology clinic. I delivered my signature oatmeal cookies, so I was probably the most popular patient of the day. My appointment with Dr. Wilson was just fine. He is such a sweet person! But earlier in the week my central line began to show signs of wear and tear. I had noticed that one of the clamps on my line was feeling a bit flimsy, and strangely a day or two later the opposite clamp broke.
Last December my previous line stopped drawing blood properly. When I went to interventional radiology to attempt to figure out what was up, it was working perfectly (of course!) but a resident accidentally broke a clamp. You may remember my having a new line placed at the end of 2011.
So when I was at the hem/onc clinic earlier this week, Dr. Wilson and his staff were extremely helpful in trying to decide the most favorable plan of action. They called interventional radiology, and the IV team came to examine my line to determine whether or not it could be repaired. But they concluded that unfortunately it will have to be replaced. There are a few varieties of central venous catheters (CVCs) available, some of which are potentially more ideal for long-term use than my current Powerline is. We considered the options, but the other CVCs are quite large. That could cause problems for me because the bigger dressings required for those lines led me to have awful skin breakdown in the past when I had a port. Also the larger catheters need to be manipulated more for dressing changes. Even a little wiggle of my current central line makes me wince from pain! So we decided that I should have another Powerline placed. The surgery is scheduled for next Friday. Last year I had severe paralysis following this procedure. Please say a little prayer that all goes smoothly this time!
In addition to my other appointments, this week I made a trip to St. Louis to meet with an allergist... But this time the patient was my baby Alice Eloise! My little trooper has dealt with miserably itchy skin for a few months now, but despite our best efforts, we just haven't been able to get a handle on things. I was awfully proud of her, as she was so very brave for her examination, allowing strange human beings to scrape her face and pull her hair without so much as a whimper. The specialist was wonderful, too. Though he probably thought I was nuts given the small novel that I had typed up in anticipation of the appointment, detailing Alice's symptoms and chronicling all of the ingredients in each of the oodles of varieties of foods and treats that I give her! The doc prescribed some meds for her and is running some tests. Alice has a followup appointment in a couple of weeks. I am confident that Dr. Caciolo will have my darling cuddle Doodle feeling better soon! Incidentally, her automobile-induced drooling has continued to be much improved! Now, I wouldn't say that she fancies car rides, but she is adequately content to lay with her head in my lap, chewing a bone, and listening to Taylor Swift. But if the music stops, the waterworks start! It's simple enough to just keep the tunes coming, and everyone is happy and dry!
Without a doubt I learned to be so prepared for my baby's doctor appointments from my mama's approach to my own doctor visits. For a few weeks, practically every time I saw her, she was gathering together all of my relevant medical records to send to Dr. Korson, the mitochondrial disease specialist that I will be seeing in Boston next week. He had requested that we forward some of my records to him prior to our visit, and the resulting compilation of samples from my history ended up filling a giant binder to the brim. Actually, earlier this week his office called and left a message inquiring how long we were planning to be in Boston... After reviewing my records, Dr. Korson wanted to be sure that he would have ample time to discuss my case with us. And before we even had a chance to return the phone call, he had cleared a time slot on Monday afternoon to meet with us in addition to my two-hour appointment that morning! We will be flying to Boston tomorrow. God is gradually revealing more answers regarding my medical complexity. We certainly know more than we used to! I am praying that this new doctor will be able to help us learn more about mito's involvement in my life.
A few weeks ago, something really interesting happened here. We had our chimney swept! When the sweep came to our house, I informed him that I had been so looking forward to his arrival. Most likely he thought that I was one of those kooks with a weird chimney sweep fetish. But when I started cracking "Chim Chim Cheroo" jokes, I imagine he figured out that I have more of a "Mary Poppins" fixation. (If only he could have seen the "It's a Jolly Holiday with Larry" clock I made for my daddy for Father's Day... As a side note, I would highly encourage Dad's friends to sing "It's a jolly 'oliday with Larry! No wonder that it's Larry that we love!" whenever they see him. He ADORES it!) I was feeling quite ready to grab my chimney brush and get my nose sooty as a professional chimney sweep. But as I observed, not once did I hear the guy chirp so much as a simple "cheroo". I did not witness a single cartwheel. As a matter of fact, chimney sweeps hardly even use those dandy brushy things anymore. They use these new-fangled gadgets much akin to a vacuum. And so as my chimney sweep illusions were swept away, I am back at square one regarding my career aspirations. Still, I wish I would have shaken hands with the sweep... I would have liked to rub off some of that legendary good luck they tout. What a shame that we don't recall such important details until the opportunity has already passed us by.
And yesterday Aunt Janet and I had quite an enjoyable afternoon! She and I have always been two peas in a pod. As a kid I would have sworn I was adopted from the Pickerings. My aunt and I have always shared a common affinity for such things as candles, nail polish, and Christmas trees. And on the flip side, my mom doesn't like "The Muppets". My cousins were raised as real Muppet aficionados. You see, I have always thought that Gonzo and I could have been real buddies! And get this: My cousin and I were both named "Sarah Kathryn". My hypothesis is that they gave us the same name to throw us off track. Of course this is a just a theory. Anyway, my Aunt Janet is making a beautiful pillow sham for me to match my Christmas quilt! Yesterday she brought her sewing machine to my house so I could see how it does embroidery. I have really missed sewing since my arm was injured a couple of years ago, so this was highly welcome entertainment! Things have been pretty nonstop hectic lately, so we haven't had a chance to dig my sewing machine out of storage, but I am anxious to give one-handed sewing a try in the very near future!
Now let me ask you something. Have you ever done anything... rebellious? I'll tell you a little secret. Once upon a time, my mom and I were in cahoots for some out of character, but all in fun, "rule bending", if you will. When I was eleven, or eleven and a half, as the case would have it, I had maintained perfect attendance at school. Well, at least my record was perfect until October 25th. My half birthday. A day to be celebrated. With pie. And "I Love Lucy". And here comes the scandal: My protective and rule-abiding mother, the one who had my sister and me practice flash cards in the summer, who enforced my 8:30 bedtime on school nights, even when "Leave it to Beaver" was on TV, who supported my education in every fashion... This fine, upstanding woman allowed me to play hooky. There. I said it! When I was in 6th grade I skipped school on my half birthday to make pumpkin pie and watch "I Love Lucy". And it was FUN! So much fun that when my half birthday rolled around a couple of weeks ago, I whipped up a pumpkin pie and my famous praline ice cream, and at the height of the festivities, blew out 21 and a half candles. And, keeping with tradition, I watched the creme de la creme a la Lucy, the "Harpo Marx" episode. My parties get pretty rowdy.
Thanks for checking in, friends. Next week will be incredibly crazy, what with traveling, followed by my central line placement upon returning home. But I will report back to you with the details of my Boston trip as soon as possible!