Kind of neat that the number of days I’ve been on this medicine coincides with the days of the month.
I was wrong on my shot count yesterday. I had a shot of insulin, two pricks from the diabetic tester and three pokes from the needle. Six shots yesterday. Let’s hope today proves better.
Woke up at four in the morning. 6 hours of sleep last night. Yay for me!
Started thinking about Neil Gaiman and the fact that the man will be in Chicago on Saturday for the free Lit Fest. I don’t have tickets, and could print them off my computer, if I had a printer. The Gaiman talks are “sold out”; weird thinking that a free talk is “sold out”, but whatever. Thinking about going, as I am basically in Chicago, but would prefer to go with someone as I don’t really like going someplace new alone. So there’s the invite. The only rub is that if someone did come with me, I would ask you to print up tickets for us. Then we would go to where he is speaking and pretty much pray that we can get into the talks without pre-tickets. Any one want to hang out at a lit fest and try and see the coolest writer ever?
Decided to get up near 5 am because I turned my thoughts to writing. Instead of writing, I decided to go on the net and found more responses to my emails, both on my yahoo account and on myspace. I want to thank all of you for writing to me and for all your well wishes. It makes me feel loved.
I wanted to take the opportunity to let you guys know that despite all the needles I have had to endure, this has been a rather nice experience. The nurses are pampering me on a daily basis. Since I’m hooked up to an IV, they bring me my food, get me water, make sure I’m all settled and comfortable. After Cathy helps me to the bathroom, I’m in the room by myself, she just pushes the IV poll around, she takes me back to the room, lets me sit, positions the IV, gets my blanket, lays it on my legs, give me the pillow to rest my IV arm on, then puts the tray on the comfy recliner. Then she puts my laptop on the desk, along with my book, my water bottle and my (big surprise I’m sure) chocolate. Had to get some when I arrived, as I did not realize that I would need some. To all of you how are laughing at me because you know I should have known better, I was waiting to get here to get myself some sherbet. I can eat sherbet but not ice cream, due to the salt content in ice cream. I didn’t find any good sherbet. I went shopping at the Jewel/Osco, and they had a bunch of ice cream and some sherbet, but nothing really fantastic. When it comes to the sweet stuff, I prefer quality to quantity. Actually, when it comes to food, I prefer quality. Which is why Brio, Octane and Irish Rose are my favorite restaurants in Rockford.
So anyway, sherbet. Jewel/Osco did not HAVE good ice cream. No Haagen Das, no Ben and Jerry’s, no Dove. I was so disappointed. So I passed on the sherbet and went to the candy aisle and bought myself 2 tablets of Hershey’s 60% Dark Chocolate reserves. I like 70 or 80% better, but that was the strongest I could get.
I am now officially, a chocolate snob, or perhaps a chocolate connoisseur. Yeah, that sounds better. While eating this good tasting tablet, I kept thinking about what Daniel says and about what the author of the Chocolate book Stephanie gave me states. Both say the same thing. Chocolate is the only substance on planet earth that melts at human body temperature, when made correctly. If you place a piece of chocolate on your tongue and it does not immediately start to melt, allowing the flavors to spread to your tastebuds it has too many fillers. The Hershey’s Reserve did not melt, does not melt in my mouth until it is practically gone. Disappointment. I suppose its safe to say that I did expect that, but still. If it’s supposed to be better then the regular stuff, it should melt in your mouth.
Still good with the strawberries, though.
Watching The West Wing on TV after breakfast before leaving for the clinic. I love that show: really intelligent conversation, well-written and good actors and actresses. Also, Martin Sheen who plays President Jed Bartlet, has MS. The episode and season that is on is the season where the Pres goes to China and has major MS issues while traveling. On the airplane, he orders food, then doesn’t eat. His Chief of Staff sends people out of the room and asks if anything is wrong; he says there’s nothing wrong. He asks for the Surgeon General, and tells her that he can’t move his hands to eat. Can’t feel anything in his hands either. Later in the episode, he can’t move at all.
I can’t remember when I started watching The West Wing, I believe it was before I found out that I had MS, but I didn’t start really watching all the episodes until after I found out. (Thank you Bravo reruns.)
The show scared me a little with MS. Of course the character is male, older and has a high stress job, but still. The show gave me a glimpse of what might come. My hope and yes, prayer, it that the Campath treatments will help to keep me healthy and avoid what I witnessed on The West Wing. Only time will tell.
If any of you are curious about another person’s experience with Campath, I found a diary of an English man online. It was really interesting, inspiring and informative. Here is the link: http://www.davidscampathstory.org/
Yesterday, Andy stuck me three times before she found a good vein. The one she finally got was the one that hurt worse then anything else. Here’s the thing. Once the initial pain faded, the IV was comfortable and I didn’t have to worry about how I positioned my arm. Knowing how comfortable it was and knowing full well that it would probably hurt like crazy going in, I nevertheless asked Andy to stick the IV in the same place on the other arm today. I’ll take a little pain if I can be comfortable typing.
Guess what? Didn’t hurt that much. Knowing that it was going to hurt helped me to relax my arm, breathe deep yoga style: in through the nose, out through the mouth, and I stayed calm. It hurt a little, not that much. And so I’m sitting here, feeling relatively ok with my IV. Awesome.
An hour and a half later and I’m singing a different tune, various swear words running through my head. As I am trying to bring the amount of curse words in my vocabulary down, I won’t use them in this letter. I get an IV infusion of steroids in the first hour-ish, then the nurses flush the IV then as long as everything is going ok, Cathy hooks me up to the Campath. Until today, the transition has gone without a hitch.
Today, (perhaps because it went so smoothly? Who knows.) when Cathy flushed my IV, the fluid went in no problem, there was no swelling in the skin, but when she pulled the syringe tip out, no blood flowed out. Let me repeat that: Cathy used a syringe to try and pull blood out of my vein and nothing happened. She called Andy in, who proceeded to remove all the tape and twist the syringe (that felt WEIRD) to try and figure out what happened. As the vein did not look like it was going to cooperate, they had to take the syringe out. Which means they had to place a new one in. Andy tried the vein by my wrist near my thumb. Hurt like hell and swelled immediately. Which meant she had to take it out and tried again in my vein in the crook of my elbow.
Though the vein there is fantastic and cooperative, Andy was hesitating to use it as that vein had an IV in it for my MRI last Wednesday. Usually with an MRI, you get scanned, they pull you out and they inject you with a contrast chemical that makes everything in your brain light up. As the techs needed me to keep as still as possible, they needed to put the IV in to minimize movement, so they wouldn’t have to pull me out. So had an IV in there on Wednesday, then on Monday, for my first day of treatment. Andy wanted to give the vein one more day of rest. No such luck. She had to stick me in the crook of my elbow, as there were no other options.
At this point, it’s looking like Andy may have to use one of the veins in my hands either Thursday or Friday. I am not looking forward to that. Twice I’ve had to endure being stuck in the hand. Once in 2003 after my car accident: I was on a very powerful painkiller. My first day after the accident, I was on Demerol. Second day: Morphine. Third day and for the rest of the time: Vicodin. The painkillers were so effective; I hardly remember the first three days in the hospital. What I do remember is two nurses coming into my room and trying to stick me in my hand. I came out of my drugged induced stupor and cried out from the pain. I repeat (I feel like I’m mimicking Lewis Black): on heavy painkillers strong enough to remove the pain of my broken foot and broken pelvic bone, I could feel the sharpness of the needle going into my hand.
The second time was when I had sinus surgery to remove the cyst in my sinus cavity. I was on a mild sedative and the anesthesiologist was trying to distract me by talking to me as he stuck me in the hand. Didn’t work. I yelled and jerked away and he had to stick me again. Since then, I have never once failed to tell someone taking my blood or trying in anyway to stick me with a needle that I need to be told when they are about to stick the needle into my skin. If I know it’s coming, I can prepare myself. If I don’t know its coming, well, I pull away, forcing the person to have to stick me again.
I hate getting stuck in the hands. I have awesome showy veins there, though, which means (sigh) I’ll probably get stuck there in the next two days.
Mmmm…strawberries. Hee hee hee…strawberries with chocolate.
Today after Cathy unhooked me, I had the opportunity to talk to Pam, another test subject. This is actually her second treatment. She had her first a year ago. I wanted to say hi and talk to her a little bit about her MS and her experience with Campath. I asked one question and she gave me a lengthy statement that answered all the other questions I was going to ask. I liked that a lot. She was really nice and very talkative and not bothered that I wanted to know more about her. Once she was finished telling me about her experiences, all positive by the way, her MS is not bothering her as much any more, I turned the talk to books. She’s into vampires and Buffy. We were able to talk a lot about stuff that had nothing to do with our illness. I really appreciated that. I learn a lot more about people when they are being positive. The whole experience made me happy. She’s a very nice person.
I talked to her for a good hour, then left the clinic and am now waiting for Jason and friends to show up to go to dinner. So this is where I am leaving off, for today. Hope you guys aren’t bored with my story yet.