I am being treated for Rheumatoid Arthritis with Rituxan (scroll down in link to Treatments, go to bottom of list). My day at the doctor's office was long, but my first Rituxan treatment was somewhat of a success, as I was able to complete the treatment. We'll see in a few weeks if this drug relieves some of my RA symptoms. My oncologist, Dr. Lynn, says Rituxan melts cancer, but unlike cancer, RA is not curable. This doctor says if I don't show signs of rejection, I can remain on this drug for a few years, or until "something better" comes along. I instantly knew that I'd like this doctor, a nice feeling. Why is it that female doctors allow patients and employees to use their first name? I don't call my rheumatologist Dr. Bob. Well, anyway I am glad, because Dr. Lynn has a huge last name that doesn't roll off one's tongue easily, something like Van Umerlington. I can't recall exactly.
Evening: Although I was groggy enough to slur from the massive amount of Benedryl yesterday, I was wide awake. Perhaps it was the combination of drugs, moreso the steroids. I ate a small dinner and felt like I'd eaten Mount Methusela, but still craving sweet/cold, I (much later) enjoyed a fudge ice cream bar. After halfway watching the Dallas Cowboys football game and whatever other drivel Mark had on TV, we headed for bed around 11:30. Mark was surprised that I hadn't passed out in my chair, but I had kept myself occupied with this handy-dandy miniature pink laptop, still the best Christmas present ever!
Bed: I washed my face and made sure to apply extra Mary Kay Night Solution, as it adds vitamins and removes free radicals - unwanted garbage absorbed into the skin from the environment. I'm guessing there was plenty of junk floating in the air of the recliner room yesterday, as all the patients were receiving a variety of chemo for cancer. I was the only RA patient. Recalling a couple of years ago when I got Remicade infusions (at an oncology clinic), my thick mop of hair got a little thinner, and that was not a side effect of the meds I was getting. Once in bed, I was restless. The clock glowed, I got up and covered it. I think there were three potty-calls between 11:30 and 4:30, completely uncommon for me. My cell phone charging light was bright, covered it with a washcloth on a return visit to the restroom. My pillow was hot, my feet were hot and my neck felt sweaty. My body core was hot, but my skin and legs were cold. The dog usually sleeps against my ribcage, a tiny ball of warmth, tried and tried, but must've felt I was a giant ball of warmth and kept moving away. Mark snores softly, but tonight it was as irritating as a jack-hammer next to me. I ran through lists (I am a champion list-maker) and wished I could turn on the light and write everything down, but didn't want to disturb my husband. The clincher was a tree frog outside the window, calling all his mates, just a yard from my pillow.
Pre-dawn: Slipped out of bed, leaving behind the snoring duo of husband and doglet, left the door ajar just in case the Juliet missed me, lest she wake Mark to open the door. With pillow and blankie in hand, I tiptoed into the family room, which is far enough away that the glow of my computer screen in the dark won't bother anybody. Although the hives left with the second batch of meds, I notice some itchy irritation in the warmer places of my body; behind knees, groin, armpits, but it's easy to resist the temptation to scratch. I looked in the mirror and saw nothing, so it may just be paranoid memories surfacing. I consider taking another Benedryl at home, but choose not to, as I need to write a list and be "up and at 'em" at 7:30. I occupy myself on the computer and keep an eye open for outside critters walking past the windows in the moonglow. It is not uncommon to see deer and bears just before dawn. Nightfall is getting later, as is the dawn, as fall nears. I like this, as I sleep best in the black darkness. Another reason I enjoy fall and winter so much.
Today: My niece Karen lives in PA with her husband and two children (almost 4 & 6) and they are in Jacksonville visiting family. My sister Kat is Karen's mother, and she will come along from Jax too. How fun!! A sidetrip to Disney is a requirement when you bring children to Florida! Miranda is scheduled to be at Bippity Boppity Botique in Downtown Disney for a little girl princess beauty makeover (birthday request, she'll be 4 next week), followed by lunch at nearby T-Rex Restaurant to please Ben, and then we head on over to the Magic Kingdom. My mother's health is pretty fragile, and Kat and Larry moved into their house to take care of momma's health, cooking and cleaning, be her driver, and handle everyday operation of the house. Daddy is well, but has the expected aches and pains of a 79-year old man. Getting Kat down here was a coordinated effort, as we arranged for Patty to take a day off of work and spend it with mom. It is a fluke that the appointment for my first Rituxan infusion was the day before Disney, not what I would have scheduled, but it was the only time available for both. I don't know how I'll feel yet. I could be a ball of fire, bounding down the sidewalk like a teenager from the steroids, which by the way, makes a person feel like they're starving to death 24/7 and gives me a little foggy-brained confusion. Or I could be totally wiped out, feeling like each step I take is through waist-deep mud. If this is the case, a wheelchair will be used. My doctor tells me to try to avoid heat and wear sunscreen, long sleeves, and a hat. The meds don't mix well with sunshine. I chose a short sleeved t-shirt, lightweight slacks and tennis shoes, but I need a hat and all I have are ballcaps. Since it will be in the 90's today, I want to pick up a long-sleeved top at the camping store that blocks UV rays and breathes. I have a lot to do before meeting everyone at Bippity-Boppity Botique at 10 this morning.
LIST: Pack light backpack with sunblock, sunblock lipgloss, comb, wallet (tickets), kleenex, Benedryl (you never know!), pain pills and meds, bottle of water, packets of cheese crackers and raisons, camera, cell phone, charger, zip-loc bags for waterproofing (afternoon rains are a given), a rain parka and a tiny umbrella. Get wheelchair cushion from The Lizard (spare car - an old green Monte Carlo). I can't get the seat high enough for short me, so it's a fixture in that car. Take video back to library, cash check, swing by Mosquito Creek Outfitters store for long-sleeved shirt. I'm hoping for a light beige/sand color to match my slacks. If they can't help me, I'll end up in Target or Marshall's on my way to Disney.
Right Now: My hips and thigh bones ache, not an RA symptom, but possibly from the new meds. I feel like I weigh two hundred pounds and moving about is an effort, which means I'll probably rent a wheelchair in the theme park. Kat is a happy chair pusher and compares it to the comfort of pushing a shopping cart, something to lean on. I don't like using wheelchairs, because people look at you with the "You don't look handicapped" judgement calls. People in front of you in the flow of traffic sometimes stop abruptly and then get upset if their ankles get hit. I am glad not to have a headache, flu sypmtoms, or any other myseries that can occur the day after a drug infusion. I am happy to report that I feel cooler and my torso and the soles of my feet aren't on fire anymore.
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