After Christmas Update

I went to my rheumatologist the week before Christmas and got the bad news that since I showed no signs of imprivements after two Rituxan IVs, this would be discontinued. A new medication is suggested, Humira, but like Rituxan, the price is overwhelming. I will have to wait and see if there is some sort of grant money to help me pay for the shots. With insurance, my part of the bill for two shots a month will be almost $600, and this is for medication that may or may not help. What a huge waste of money!  Merry Christmas.  I am bummed.

After returning January 4th from ten wonderful days in knee-deep snow in the mountains of NC, I am nearly recovered from a pretty significant chest cold.  Nyquil at night and some non-alcohol cherry chest congestion liquid by day seems to have done the trick.

We found our septic tank had backed up into my shower while we were away.  How totally gross is that?  I ruined my favorite black slacks when I ran into the bathroom and sloshed bleach in the shower, holding my nose all the while, and causing instant orange spots on my pant legs.  The septic tank truck couldn't come until morning, so Mark squirted the air with disinfectant spray and blocked the bathroom door with towels to save the bedroom off from the offending odors.  I spent my first night in 28 years on the couch, as I felt that breathing the nasty odor would further injuure my sick lungs.  The septic tank guy did his job and also unclogged a pipe, $295.  It seems like a miserable job.  I would have asked for more!

The washing machine began banging and walking with a small load of towels, so I called the appliance repairman after the septic tank man left.  Mr. Maytag arrived the next day and a $50 service call, he showed me a simple spring that had broken.  It would take two weeks and cost an additional $200 for the repairs.  I went online and found the same springs (6 of them) for $20 on ebay.  I spoke to the online appliance store, and was told that the springs were a simple install with a pair of pliers.  I ordered the springs and cancelled the Maytag man.  The new springs should arrive tomorrow, but in the meantime, dirty laundry was piling up fast!  I sorted out tons of laundry, shoved them in the back of my SUV, stopped by the bank for quarters, and started washing!  Everything went smoothly until all twelve loads were dry all at once.  Talk about speed folding!

Second Rituxan Treatment

Tuesday I had my second Rituxan treatment for Rheumatoid Arthritis.  Starting an IV is a challenge, as my veins like to blow, but after one painful vein in my hand went, she switched to the inside of my elbow and it worked like a champ!  Anticipating another hive reaction, the doctor ordered double Benedryl, which was another great idea!  My appointment was at 9AM and the IV meds started at about 10AM. I remember getting some juice and crackers around 11:30, but after that, I slept.  I slept so soundly (Benedryl induced), that I didn't wake up when the nurse removed my IV at 1PM, and she didn't want to disturb me, so I woke up at 2.  I was pale and weak after the IV, but drove myself to a hair appointment and then home.  As with the first infusion, I noticed that I slurred words, but this only lasted the first day.  My hands were weak and when I cooked dinner, I knocked a box of corn starch all over the tile and halfway swept that up, then spilled a box of couscous all over the floor.  David came to the rescue and cleaned up both of my messes.  Dinner was simple, a baked chicken, couscous (there was another box), and green beans.  I felt weak, my long bones ached, but Tylenol checked that, and I went to bed early.  Day two was much better.  I did some laundry, played with my dog, and hung around home, resting a lot.  There won't be another infusion for four to six months.  Yay!  I'll keep you posted on any RA improvement.  So far, I notice my large joints are less compromised.

First Day After Rituxan

My niece Karen, Christian, their two children Ben and Miranda came down from PA, and my sister Kat (my sister and Karen's mom, lives in Jacksonville) drove down together and we met at Downtown Disney.  While Christian and Ben visited the Lego store, Miranda went to Bippity Boppity Bootique for a princess makeover, complete with a tiny tiara adorned bun, lipstick, nail polish, and magic sparkles all over!  It was a wonderful birthday for a 4-year old who loves being a princess.  I met up with the crew at T-Rex, a restaurant that sells humongous hamburgers for humongous prices!  Kat and I shared, plus we each had a soda, and our bill totalled $27, gratuity included.  Welcome to Disney! 

I have never seen Disney so empty!  Summer break is over and big kids are back in school, so the Magic Kingdom guests were locals, and couples with small children, or perhaps homeschooled kids like my grand niece and nephew.  The hot weather kept people away too.  Look at the pictures, barely anybody there!  We were still hot, but not nearly as hot as we were before it rained.  We arrived around noon and got to go into all the rides that we wanted to do. (Karen and her son pre-planned), and left at 7PM as the park closed for Not So Scary Halloween, a kid party for an additional cost.  It was beginning to rain as we left.

So the Disney day was on Tuesday, one day after I received Rituxan, a chemotherapy drug that should help reduce the  symptoms of rheumatoid arthritis, but according the the doctor,  "miraculously melts" non-hodgkins lymphoma, but since there's no cure for RA, I'll have to settle for what it can do for me, if it helps at all.  So, it's chemo, and I took it and I had plans the next day...Disney with my niece and her family and my sister Kat.   I didn't feel up to prime when I woke up Tuesday morning, and decided  I'd definately use a wheelchair.  I had a note from the oncologist's office stating that I was not to be standing in long lines or heat.  I showed my note to the customer service desk in the "City Hall" at the Magic Kingdom and was issued a red pass.  This special pass put all six of us first in line at all the attractions.   Just flash the magic card!

 I had a little bit of an upset stomach since the chemo.  My stomach doesn't hurt, and this continues.  I guess that's to be expected when you pump your system full of poison.  Monday, the first night, which was the night before Disney day, I didn't sleep well, feeling hot through my body core, a little agitated, and not sleepy, but exhausted all the same.  I guess you might call it an anxious feeling.  I'm guessing the anxiety is from the double dose of steroids I got.  The heat I felt was through the core of my body, down my legs and out of the soles of my feet.  I'm usually chilly at night and frozen feet are the norm.  It was totally different than a hormonal hot flash, maybe it was a fever? My skin was cool and  I didn't feel sweaty.  I was too tired to get up and check, much less to think about taking any medicine.  I gave up on sleep around 4AM,  and felt a little wobbly plus my large bones were somewhat uncomfortable.  Not tooth-ache painful, but there was surely something going on in the marrow of my bones, especially in my  legs,arms and hip bones.  It was not arthritic joint pain.  Hard to explain, but I knew walking all day would not be a good choice.  I felt a little tired too, maybe from a poor night's sleep, plus I noticed that I was fuzzy brained and slurring a little; a drunken-sober person!  

Kat likes to push, so she was in charge of my wheelchair.  Karen and Christian got a double stroller for their kids, ages almost 6 and almost 4.  They never did ride together, but if they got a single stroller,  both probably would have wanted to be in at the same time.  Normal kid stuff...  The children were fantastically well behaved.  I think they were the best kids in the whole park!  It was such a great day!!! 

The weather was incredibly hot and humid.  Within the first hour Kat started to feel a little woozy and nauseated and so she got a bottle of ice cold water, which was the cure.  It was surely because of the intense sun and heat, and we heard other people were feeling the same.  I was in a wheelchair, so I wasn't putting forth any effort -  like walking, but I was still roasting.  My doctor advised that I cover completely, so I had on a special wide-brimmed UV protective floppy hat and a UV summer long-sleeved shirt over an absorbent tank top, long pants, and tennis shoes.  I sprayed all my exposed skin with #50 sunblock.  I drank cold water, and was strolled around like a queen!  The clouds were dark and we finally got a quick rain around 2, nothing big, just some drizzle to run through, and this made a huge difference in the weather for the remainder of the day.  We rode the Brer  Rabbit water ride and we all got pretty drenched, which was terrifically refreshing.

Large crowds of costumed locals were arriving for the Halloween Party as we were leaving the park, and the skies opened once more to emit cooling rain. We were happy to be on our way out! Another stop at Downtown Disney to get my car, a Lego Land prize for the kids, and finally to grab a happy meal from McDonald's. I left in my car, and they headed back to Jacksonville in theirs, a 2-1/2 hour drive. It's only a half hour drive for me, but I had to stop off at Publix to pick up a prescription. I was home, showered and asleep by 9.

Rituxan for Rheumatoid Arthritis

Rheumatoid Arthritis is a pain that has no cure! There is a biologic medicine called Rituxan that may offer some relief, and so I am scheduled to have my first IV next Monday 9/21/09. All the information about it is at www.rituxan.com.

The infusion is given at an oncologist's office. Oncologists are not just for cancer. I will be in a room lined with people in recliners receiving a variety of IV medications, some for arthritis, most for cancer. We watch tv, read, knit. My medication will take about four hours (or more) to receive. It's given in stages, small amounts at a time so I won't have a strong reaction. We are instructed toeat breakfast, bring lunch and bring a blanket (the room is cold). There are a variety of side-effects, some horrible and deadly, but more common are itching, chills and a headache.

I had to have a negative TB test, take a flu shot, and have bloodwork, which have all been taken care of. Now it is up to the insurance company to set a price, which I think will be 20% of the infusion price. I hope it will be lower, as the price for biological therapies are usually astronomical.

I'll keep you posted.