Thursday, September 25, 2008

Visit 11 FTY720 Fingolimod Trial and the helpful reminders

I don't know if I'll ever top that last post... unless I break a bone or something equally as painful, but I have to pop in here and keep everyone updated on the trial since that's what this blog was supposed to be about.

I have visit 11 a week ago today. They just drew blood and took vitals that time. Next time (on the 9th) I'll have to have a PFT (Pulmonary Function Test) and an eye exam. Oh boy! The hurry-up-and-wait place. I'll be sure to bring a book.

It's been really crazy these last couple of weeks since the extension phase started. I really feel lost without the shots (I'm sure you are all boo-hooing for me). It's just that after 10 years of sticking myself with a needle either daily or weekly, now that I'm not doing it, I find myself forgetting that I even HAVE MS. Kinda like it was all a bad dream.

Oh, sure, I still have fatigue (that I blame on not getting enough sleep) and my legs like to get spastic and twitch when I watch TV at night (don't everyone's?) and I find myself forgetting stuff easily (but then so do my mom and my sister who don't have MS).

I think I've come full circle and I'm back at the Denial Stage.

I guess I have to do all the bargaining, getting angry, being depressed, and then accept it all over again.

I've gotten so complacent about the whole thing that I started freaking out that I may forget to take my pill....the whole reason I feel so great! I wouldn't be a hypochondriac/worry wart if I didn't have something to worry about.

So I decided to set up a Google Calendar and make it send me email alerts since I'm usually sitting here at the computer at 9am when I should be taking my pill.

It worked fine for the first few days until I added reminders for all the other things in my life, like Boy Scout meetings, clinical trial appointments, bill due dates, and anything else I could think of.

For some reason it quit sending me the TAKE YOUR PILL emails. In desperation, now that I had made myself dependent on an electronic device to orchestrate my every move, I decided to get the Post-it Notes virtual version.

That was fine too. You could even insist that your sticky notes are always on top, no matter what you are doing. That worked out really well until the visual portion of my screen was reduced to a hole in the middle surrounded by all the events in my life on my virtual paper scraps.

I virtually trashed all my virtual stickies and went to Yahoo to see what they had to offer.

Not only did they have a calendar which would let you create events and send email reminders, you could also set it up to send a message to your CELL PHONE! How cool! So now, if I'm not sitting in front of the computer at 9am, I'll still be sure to get the reminder because my cellphone is always in it's holster on my hip, like Annie Oakley only, instead of shooting them, I can whip it out and call 3 people standing behind me while looking in a mirror over my shoulder.

I think I have found the Mother of All Virtual Reminders and I go off about my day after setting up the most important reminder of all...the "Take Your Pill" cellphone reminder set to go off at 10 minutes before The Event.

That night I sleep until my bladder wakes me at quarter to 4. I return, not to my bed, but my recliner, for a change of scenery. Don't ask me why, I have just taken to sleeping in that chair and it's become more comfy than my bed.

I'm very nearly back to sleep when my cellphone rings, scaring the beejeebers out of me. "Something's happened to Mom or _____, or _____, or _____!" Fill in the blanks with every name in our family.

When I finally got to it, my heart was racing and I was very nearly in a panic. There's never a good news 4 am phone call unless it's someone who just gave birth and nobody in our family is currently pregnant.

I flip open the phone and I'm greeted with "TAKE YOUR PILL".

Now I'm calling Yahoo all the dirty names I had reserved for Google when their calendar drop me like a prom date with a zit the size of Houston.

Since I'm wide awake now I go investigate how 9am had become 4am.

There's no issues with the calendar. Everything appears in order. Then it occurs to me.

Set the time zone, Stupid.

This morning the cellphone rang exactly at the same time I was staring at my inbox and got the matching email telling me to TAKE YOUR PILL.

And right behind it was Google's email telling me the same thing.

After seeing all that and realizing everything was set up perfectly and knowing that I'd never have to forget another thing in my life...

I darn near forgot to get up and take my pill. I'd gone on to read other emails and 20 min. later jumped up and took it.

Next comes the Mom-nagging-back-up. If I tell her, she will call me, nag me about taking my pill, and actually tell me to go take it while she hangs on. Mom's an expert at that nagging stuff.

The great thing about all this is the idea that I could ever make it to the point of not being constantly consumed with the fact that I have MS. To not be feeling it's impact every waking moment is a fantastic demonstration of just how far I have come.

18 months with no relapses now...and somewhere along the way my legs quit burning and my hips quit hurting.

I just woke up one day and realized "hey! nothing hurts, nothing's numb, and I have this strange sensation I've not had in years....what is it?? What could that be? I know!! I feel NORMAL!!"

Friday, September 19, 2008

The grass may be greener over there, but I'm more black and blue.

What the heck is she talking about now??

My sister's laughing already because she heard the story last night at our Thursday night get together. I expected to go over to Mom's to just show everyone my newly unveiled and de-stitched scar on my back, but I ended up showing them the scrape on my stomach instead.

My son and I had driven back up to the dermatologist yesterday afternoon for the stitch removing ceremony from my war scar of fighting the Fingolimod battle against MS. (Too much to explain, just go back a few posts).

It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

I looked down at my hand. Uh oh. The keys are by the computer.

This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

My son climbs up and looks over the other side.

"I dunno, Ma. I think I might get hurt," he says as he comes back down.

"Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audiencage.

By Special Request...

Here's a blog post, by special request of a newbie reader, recapping my progress over the last year of the trial:

Clinical trial start date: 8/20/07
Starting symptoms:

  1. Numb legs.

  2. Severe burning in both legs from knees down.

  3. Unable to walk the grocery store (used the electric cart)

  4. Walked with a cane.

  5. Unable to run, hop, jump.

  6. Severe panic attacks that necessitated use of Xanax as needed.

  7. Depression.

  8. Spasticity in arms and legs.

  9. Extreme fatigue coupled with insomnia.

  • Bladder and Bowel *issues*. That's all I'm saying.

  • (there may have been more symptoms but I forget).

    natalie dee
    At one year anniversary:
    Change in above symptoms:

    1. My legs aren't numb, except occasionally if I overdo it (the numbness comes back slightly but goes away with rest).

    2. Same thing with the burning -- only upon overdoing it.

    3. I can walk the entire grocery store and even PASS other slow pokes while doing so.

    4. I do NOT use the electric carts or the blue parking spaces.

    5. I don't know where my cane is.

    6. I can run across the yard, I can hop on both feet or either foot, I can JUMP!

    7. I haven't had any Xanax in at least 11 months.

    8. I'm no longer depressed. (I never took any medication for it either).

    9. My arms and legs still have some occasional spasticity.

    10. I sometimes take naps in the afternoon -- getting fatigued if I eat too many carbs at lunch.

    11. The insomnia thing I still have some trouble with. Some nights I fall right to sleep, other nights I go to sleep and wake up a few hours later, and some nights I don't fall asleep until the wee hours of the morning. It all depends. I adjust my naps accordingly.

    12. Thank God the bladder and bowel issues are over.


    13. Anyhow, that's the difference between now and then.

      Just last night when I was over at my Mom's house, we were all reminiscing about what I was like back then and their perceptions of the changes are even more dramatic than my own.

      This FTY720 Fingolimod trial has been instrumental in my breathtaking progress toward wellness, in my opinion.

      By coincidence, I got this link in my alert email today about Fingolimod:
      Stu's Views Article on Fingolimod

      Also, I was diagnosed in 1999 and have had at least 2 relapses per year since then. From 2005-2007 I had relapses every 3 months, with a recovery period of 3 months. I was basically suffering all the time.

      It has now been (drum roll please)

      SEVENTEEN MONTHS WITHOUT A RELAPSE!!

      Needless to say, I am a true believer.

      BTW, Cheese, this isn't the funny post I promised. It's coming tho. I have a draft I'm working on.

      Anyhow, thanks to all my readers -- old and new -- for following along, and this concludes the "Because You Asked" section of my blogging day.

      I will now return to my self-absorbed musings that try to be funny.

    The grass may be greener over there, but I'm more black and blue.

    What the heck is she talking about now??

    My sister's laughing already because she heard the story the other night at our Thursday night get together. I expected to go over to Mom's to just show everyone my newly unveiled and de-stitched scar on my back, but I ended up showing them the scrape on my stomach instead.

    My son and I had driven back up to the dermatologist yesterday afternoon for the stitch removing ceremony from my war scar of fighting the Fingolimod battle against MS. (Too much to explain, just go back a few posts).

    It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

    We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

    We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

    I looked down at my hand. Uh oh. The keys are by the computer.

    This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

    I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

    My son climbs up and looks over the other side.

    "I dunno, Ma. I think I might get hurt," he says as he comes back down.

    "Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

    I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

    I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

    Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audience.

    As I am climbing up, I am thinking to myself "heh. You'd have never caught me trying this last year! I've become darn near invincible! Good thing I wore sneaks instead of flip flops."

    And it was right about then, as I had one foot on the top rung and the other poised, mid-air to swing over the top of the fence, that I realized the A-frame was moving and it wasn't a side to side wobble. It was falling away straight out in back of me.

    As I fell down onto the top of the fence which hit me right square in the gut, I remember thinking "glad we got that square topped fencing and not that real pointy stuff!" I balanced there for a couple seconds and then began to slide. The fence top caught under my shirt and the rough, unpainted wood proceeded to peel me like a potato as gravity pulled me down.

    "YEEEEEOOOOOOOWWWWWWW!!!" was all I could manage to get out as I slid uncontrollably.

    Then I realized, to my horror, the fence had scraped right under my shirt and managed to snag under my bra and I was hanging there, in front of the rush hour traffic with my shirt and bra over my head and my feet still off the ground.

    Oh. My. God.

    So many thoughts racing through my head as my hands worked madly to try and lift my entire body weight off the fence by my snagged shirt and bra.

    "I hope my neighbor isn't watching!"
    "I hope my son isn't watching...and scarred for life!"
    "Man I don't want to find this on youtube!"
    "I hope my brand new bra isn't all womped out of shape now! I paid good money for that!"
    "That breeze feels kinda nice!"

    It was probably only seconds before I was down off the fence. Then I was so busy surveying the carnage that I forgot I had an audience and when I remembered I was frantically trying to cover back up.

    So how did we ever get the keys and go to Mom's that night, you ask?

    My son, who had fortunately been spared from witnessing the whole tragic act, was around the corner wandering and goofing off, oblivious to it all.

    When he saw me crying over my hurt dignity he asked what was wrong and I told him the fence had just beat me up.

    He puffed out his chest and strutted over to the fence proclaiming "I'm not letting MY mom get hurt again! I'm going over the fence!" He proceeded to climb with a purpose and was up and over the fence without so much as a splinter to show for it.

    He was in the back and out the front with keys in hand before my stomach and chest had even done welting up and bleeding and turning black and blue.

    So, there could be one more side effect of Fingolimod that I hadn't considered.

    The bottle should say "Caution: May cause feelings of grandeur and invincibility that could cause you to go temporarily insane and make a 47 year old do something that only 10 year olds should even attempt."

    or

    "Caution, always tuck in your shirt while taking this drug. May get hooked on fence and hang naked in front of traffic. Be sure to stay away from all fences before you know how you will react to this medication."

    or

    "Stop taking this medication and consult your physician immediately if you find yourself hanging by your shirt from your fence during rush hour with your boobs exposed for all to see. This could be a serious reaction and may need medical attention, especially if scrapes, swelling and bruising develop."

    If I have anything to say about what the warning labels will be, that should about cover it.

    Tuesday, September 16, 2008

    It's Official!! I'm on drugs!!!

    I'm so freakin' happy I can't stand it! Probably because I'm taking these:



    In all actuality, they aren't "pills" but rather "capsules" and they look more like this:

    Well, without the face, arms and "F" on it's chest, but you get the idea. I took creative liberties.

    I spent the day getting randomized yesterday even though it was anything but random. I took my very first honest-to-God, no-bout-adout-it, Fingolimod capsule. Then I waited to see if I'd have all sorts of weird side effects.

    I have had no doubt for a year now that I have been on the actual FTY720, but I would not be the professional worrier that I am if I were to neglect the opportunity I had before me to envision my horrible demise on the floor on the Research Department from heretofore unknown side effects.

    That could be why my starting pulse rate was 88. Well, for that reason and also having just spent the previous 2 hours screaming to deaf ears through my closed windows with running commentary about the driving capabilities of surrounding motorists who were hell bent on filling the space between me and the next guy. Didn't we all learn in Driver's Ed (or at least from that book the DMV hands out) that you are supposed to leave a car length for every 10 miles per hour between you and the next guy? These idiots around here think that if your bumper isn't jammed up the tailpipe of the person ahead of you, then you must be inviting them to slide sideways into that space in order to fill up the unnatural void and make everything right in the universe.

    If only they knew that my brakes worked on roughly the same principal as the ones in the Flintstone's car, maybe they wouldn't be so eager to get directly in front of me.

    This was my only form of entertainment on the drive up because I took the Jeep. It's a 95 and believe me when I say that it's had a hard life. There's no radio, so I brought along my new MP3 player chock full of all the songs I love. I made sure I packed it in my tote bag the night before so I wouldn't forget it because 2 hours of talking to myself leaves me teetering on the edge of deranged.

    Unfortunately, I was destined to arrive at the lab deranged. I was part way there and decided to dig the MP3 player out of the bag. It's a simple, cheap device that has very few buttons. I know by the feel of the contours which button does what. The on/off button refused to work, however. I repeatedly tried it and repeatedly the screen lit briefly and went off.

    I surmised that something else in my tote had leaned on the power button and caused the battery to inadvertently drain. Since I was running late after having been TOLD to be on time, I didn't want to chance wasting any more time stopping for batteries. Instead, I sang the songs "sans music" (because I can't spell that word I wanted to use and spell check refused to bail me out) while pausing to cuss my fellow motorist.

    But I digress...at any rate, that' s most likely the reason I had a high pulse rate. After an hour it went to 77 (which is still higher than normal for me).

    I brought some movies that I (cough, cough) *made* and brought with me for my viewing pleasure figuring they'd stick me in the conference room with the cushy chairs. I asked if it was available and it was, so I planted myself at the head of the big oval table and plugged my first movie, "Bucket List" into the TV/dvd player.

    I had a cooler full of drinks, a salad, a pita bread turkey sandwich, some grapes and a chocolate pudding. I had a seriously hard time not devouring it all before 10am since I had been awake since 5am and forwent (that is the past tense of forgo, is it not?) breakfast. I cracked open the container of grapes around midway through the movie and was only going to eat a couple but ended up with a grape-bunch carcass rather quickly. Oops.

    When the nurse came to take my vitals the first time I mentioned my lack of self-control and she said I had $8 worth of "meal tickets" coming to me courtesy of Novartis. How thoughtful. They shouldn't have! But I took them anyhow. As soon as the nurse left (and I know you're reading this Lorene) I devoured my lunch with wild abandon.

    Next hour, the movie was just ending and she had the tickets for me. This is when I decided to go for a walk in search of batteries for the MP3 player. The nurse suggested the pharmacy across the street. Sounds close, huh? Well, in actuality, it was 8 stories down, across a humongous parking lot, a 4 lane divided highway, and across another parking lot that was up a hill that has no business being in Florida.

    I walked over to find out that there's no place to buy batteries there unless I wanted to walk to Walgreens -- another 4 city blocks in the direction that takes me away from the Research Dept. I looked at my cell phone (because my watch battery died eons ago and I have yet to replace that one, too). It was 40 min. until my next vitals check. No dice. I just didn't trust myself to be able to "hurry". I trudged back down the hill, across the street, and across the parking lot. I got there with 30 min. to spare.

    That's when I went and got lunch with my meal tickets. Yeah, I know I just ate the one I had packed, but this cafe in the medical building only serves during a certain time period and I didn't want to miss out. (sounds good on paper.)

    Glad they told me it was teriyaki chicken because even playing 20 questions, I'd have never guessed. They are creative dish namers. Suffice it to say I'm so glad it was play money and none I'd had to cough up.

    I returned upstairs to the nurse's office/supply room (really, Lorene, you need to complain about that) and retrieved my cooler (which still had drinks) and was placed in an exam room and given a portable DVD player to resume my movie watching. Seems they sometimes use the conference room for conferences around lunch time and I really didn't need that big of a place to stagnate.

    She set up the DVD player and my homemade DVDs all refused to work. I brought a book (and the now useless MP3 player) as backup, but we all know the MP3 player was out of commission and reading always puts me to sleep. That's when she came up with a novel idea.

    She told me that the McDonald's which was 4 city blocks away, has a Red Box where I could rent movies...if I felt like walking that far. So, she took my vitals and I was again off, out the door.

    I debated driving as it didn't seem like that far of a walk. I'd been to that McD's before and my recollection told me that it was pretty close. I didn't stop to think I had always driven there before. I should have realized that if I didn't see it when I looked up the street, then it was farther than I should be making myself walk.

    But the Jeep was occupying prime real estate in the parking lot and no amount of bribing would get the attendant to hold it for me. "You have to take your chances," she said.

    So, in a blond, senior citizen type moment (did I offend enough people yet?) I decided that leaving my car in it's ideal spot while I walked 4 city blocks, just so I wouldn't have to walk a little farther in the parking lot when I drove back from McD's was the more logical thing to do.

    Maybe it was a Finglimod side effect... do something totally illogical and only realize the error of your ways when you are at the farthest point (a.k.a. McD's) before you realize what a blunder you have made.

    I took quite a while picking out my movies. It was blazing hot outside and I had chosen to wear black (in keeping with my day's decision-making Theme of Stupidity).

    I felt my legs go all rubbery on the way back. I could feel my pulse pounding in my neck, I was on autopilot floating along just hoping I could make it back at all, let alone before the next vitals check. Heh...I might not have any to check at this rate.

    I got back somehow and sat on the curb right in front of the building because I still had a half hour. I hadn't been gone long, but the walk seemed like it had taken days and I should be in another state by now. The only state I was in was one of exhaustion.

    I took the elevator back up to the 8th floor and Lorene said "did you see Walgreens? It was right across the street from McDonald's."

    "Yes, I saw it, but there's no way I could have ever crossed that street, shopped for batteries and been back in time for the vitals check." It was all I could do to keep from laying down on the bench at the bus stop and taking a nap.

    "I'll go there in the Jeep after this is all over," I said in a brief moment of lucidity.

    She left me alone in the exam room with "Baby Momma" playing. I ate my pudding and drank another soda while I was begging the movie to be worth the walk. It was cute but "worth it" was debatable. The second movie was Charlie Wilson's War and while I probably could have watched it at home, it started off slow and threatened to put me to sleep. Since I didn't have a pillow and binky, that wasn't an acceptable outcome.

    I did an encore of Baby Momma for the last hour.

    I got my last vitals check and the ending EKG.Oops! I forgot to mention the first one, and ya'll are probably more interested in the specifics of the clinical trial than hearing me blather on about driving, lunch menus, olympian walks, and batteries, but that's the beauty of being Emperor of The Blog -- I write what I want to and you must suffer the consequences or click that "next blog" link at top left and take your chances. (Are you out of breath reading that last sentence yet?)

    Anyhow, I got my EKG and when the doc who oversaw the Randomization took a look at the printout, she said I had a "real nice looking heartbeat". At 47 you are more appreciative of hearing that than if someone had said "nice butt". I'm glad my heartbeat looks good...especially after having the Real Deal running through my veins all day for sure.

    When it was all over, they gave me a To Go bag with 3 pill bottles in it and a new appointment scheduled for 2 weeks from now. NO MORE NEEDLES!!! YAYAYAYAYAY!!

    I left there happy and walked the short distance to the Jeep, now thankful I'd walked to McD's earlier since that was safely in the Past and this short walk was in the Now. (Kind of like when I do the dishes the night before and wake up to the surprise of a clean kitchen, same principle.) I got in and drove the 4 blocks to Walgreens and went in to get my batteries.

    When I came out, I pried the back off my MP3 player and plugged the new energy unit in. I turned it on. It came on and went off...just like before.

    I dug my bifocals out of the totebag, mystified that it wasn't working. I tried again.

    The tiny screen had one even tinier word on it. "LOCKED" it said. I messed with all the buttons. It didn't take long to figure out that one on the bottom of the device, which I had tried to figure out yesterday what it did, was the one that locked it from being accidentally turned on as I had suspected happened all along. Sheesh.

    I listened to music the whole way home and didn't cuss much at all at my fellow drivers. After all, I was on my Happy Pills.

    And that ends the day's events. Now it has been proven beyond a shadow of a doubt that I can write for a very long time about 6 hours worth of absolutely nothing (10 if you count the drive). I missed my calling. I should have been a writer for Seinfeld.

    If you're still here reading, for God's sake, get a life. (Just kidding, thanks for reading!)

    Saturday, September 13, 2008

    No news is good news!

    At least when it comes to me and blogging. It seems as tho if I don't have a predicament or dilemma to write about I forget to write.

    I left off last time with a cliff hanger and had a couple people write to ask what the heck ever happened. I was going to wait until the fall line up to have everyone tune in then to see how the cast of characters did. Seeing as how my little blog is not being premiered on national television in prime time, I guess I can just go ahead and post what happened now and relieve all the suspense.

    When last we left off I was whining about my back hurting from getting Frankensteined and contemplating in hopeful expectation the idea of being Randomized on Wednesday. Later on that day (Tuesday) I got a call from the trial coordinator saying my new "stash" was in and I could come up and get it. As crazy as this may sound, I told her it would have to be the next day. In all my excitement of self-centeredly getting wrapped up in my own made-for-TV mellowdrama, I completely forgot that I had to take my mom to the doctor's that afternoon.

    So I drove up Wednesday and got my fresh bottle of Heaven in Pill Form...and a box of shots. DOH! They wanted me to do one more lousy shot before I start the extension. Is this some cruel joke? I already had the Last Shot Ceremony and had mentally prepared myself for a life of never having to poke myself again. DRAT!

    "I have to do another shot??!" I said in my most whiny, childlike voice supposing the force of my annoying tone would alone be enough to make her cave and say "Nah, I was just joking, it's a box of popcorn. Enjoy!"

    But she was the trial nurse, and she's no slacker. She's studying to be one of the Research people who travels around from center to center putting the fear of God into everyone while checking to make sure they are doing everything by the book. To let me skate on taking the shot, regardless of its most assuredly water-like placebo content, would go against her training and all she is working towards.

    While we were debating the shot, I popped the top on the new bottle of pills and swallowed one right there. Ahhhhhh!! The magic of the mind. I instantly felt "right" again. Like it was the final piece in the health puzzle that made me feel normal....must like I imagine a junky feels when they get their fix.

    While I was basking in a Fingolimod glow, I was told that Wednesday was off and I would be coming up on Monday the 15th to get Randomized. I don't know why they call it that -- it's anything but random this time as I will take my first honest to God bona fide Fingolimod capsule, never to wonder again if I'm getting the real deal or not. (Like I have any doubt!)

    So, Monday I leave at the crack of dawn to make the 2 hour trip to arrive for my dose at 8 sharp. Luckily I'm a morning person.

    I'm packing a cooler and bringing a book, an MP3 player, a couple dvd's and anything else I can think of to entertain myself.

    I wish they'd just let me leave and come back on the hour. It's right smack in downtown (just about) Jacksonville and there's lots of stuff to do there. Seems like the only time I am ever in downtown Jacksonville it's not to go to museums or art galleries, but to go to the hospital. *sigh*

    I'll take my camera, at least, and see if I can get some of the players to pose for blog pics....or take a couple of me being bored.

    Until Monday... thanks for playing along. I appreciate that someone out there cares.

    Tuesday, September 9, 2008

    My Impression of Frankenstein

    I finally had my appointment for The Excision with my dermatologist yesterday. Having never had an excision, I imagined it would be the same as the biopsy only take off a little more.

    Imagine my surprise when I saw the tray full of sharp things, pokey things, and what looked like a miniature cattle prod.

    I lay face down on the table and my shirt was hiked up just enough to expose my midriff. As places to grow moles go, I guess this was pretty convenient. The tray full of torture equipment was right next to my head at eye level to evoke maximum anxiety. It worked like a charm.

    The nurse, after watching me squirm around trying to get comfortable said "I'm sensing a LOT of anxiety here! Your imagining too much; it's really going to be nothing."

    I said "Nothing? Really? Then I can go now?"

    She said, "Take a few deep breaths in through your nose and relax."

    She went out of the room and came back with a small blue box about the size and shape of a car battery charger. It had wires coming out of it that looked a little like a jumper cable. She placed it under the table and plugged it into the wall. I could see all this by peering through the small gap between the table and headrest.

    Then she placed a metal plate on the table that was hooked to wires that led to the box. She instructed, "When I tell you, put your had on the metal plate."

    I looked at her like she was a three headed monster who wanted to eat me and said "Wha-what is that th-thing?"

    "It's a ground plate for..."

    "La-la-la-la-la! I can't hear your! La-la-la-la-la! Honestly, the less I know the better. If I ask about any of the sharp or pokey things or the wood burning tool, just ignore me, k?"

    Why do people laugh at me? I guess it's the way I phrase stuff, and maybe the fact that when I get stressed out I deal with it with humor. I was a freaking stand up routine laying on my stomach at this point.

    The doctor came in and started saying stuff in code to the nurse and scribbling around in my folder. I think they were playing Hang Man, or Tic-Tac-Toe, but he wasn't giving her a chance. He was cheating, I think.

    I cleared my throat and spoke up, "Doc, I emailed your brother (my neuro who is the lead investigator in the clinical trial -- how convenient!) and asked him to help me get these results expedited so I can be assured to make the deadline for the extension phase."

    Doc said "Yeah, we spoke over the weekend. He started off by trying to explain who you were as if I didn't know and I cut him off saying 'I know exactly who you mean'".

    (Geeze, am I that much of a pain in the butt that I leave a lasting impression?)

    I said, "Well I have instructions from the trial coordinator. She called this morning and told me that I need to get you to write a note saying you excised the mole with clear margins and it's benign, and write this on your Rx pad and sign it."

    He said, "I'll gladly write the note...after I get the pathology back."

    I said, "Noooooooo!!! I have to have it today!! The whole reason for the note is to circumvent having to wait for the pathology. If I get the note, I can start the extension phase next Monday!"

    Sensing my panic and wanting to avoid a scene right before a surgical procedure and perhaps catching wind from the nurse about my Elevated Anxiety Level, the doctor caved and said "I'll write the note."

    Whew! I was feeling better already.

    Then came out the tools of torture. Me thinks perhaps I should have strategized more about the opportune moment for ticking my doctor off, but now it was too late. Fortunately, the nurse had jabbed me in the back enough times with numbing agent already that all I felt were the tugs and jerks at my flesh.

    Then this buzzing noise started and I thought I smelled something foul, like burning human flesh. And I had an odd sensation the entire length of my body...kinda like, what's that feeling? Like being shocked?

    As if on cue, the doctor says "Do you have your hand on that plate?"

    I say "no, she never told me to put it there."

    "Well, put it there!"

    Then I felt (a.k.a. imagined) my arm cramping up, a buzzing sensation and my forearm tingling as if being electrocuted. I mentioned this.

    The doctor playfully said, "You're getting a little carried away. There's nothing at all in this room that will remotely hurt you in any way."

    I said, "I beg to differ as you cut, cauterize and sew my back, doc. The only reason it's not hurting now is because I've got a turkey baster full of Novocain crammed under my skin. I bet it hurts later!"

    He laughed. You really shouldn't try to make your doc laugh while he's sewing. I did request that he embroider my initials and he said he could do that. As many stitches as he used, he either honored my request or my incision is about 3 feet long. (Nice trick since I'm barely over 5 feet tall...I must be long waisted.)

    He got all done, I lived to tell the tale, and he wrote the note. He refused to say "benign" but instead wrote "not malignant". I didn't know there was a difference. I guess there's shades of gray in between or something but I always thought if a doctor told you "It's not malignant." and you said "Whew! Then it's benign?" that he would in turn say "That's correct." Who knew?

    I walked out of there with a backpack sized bandage on my back covering the area where once had been a cute little brown speck, and I did my best Frankenstein impersonation waddling out of there. I got a laundry list of care instructions and a script for Bactrim which is one of the very few antibiotics my body hasn't decided to grow hives or swell my tongue over.

    I got in the car and drove straight to carry my precious cargo, The Note, to my clinical trial coordinator. I felt like I had the Golden Ticket from Willy Wonka or something. It was my entry into the No Kidding This is IT part of the trial where I don't have to wonder, "Is it Fingolimod or is it Avonex? Only her hairdresser knows for sure."

    I'm just hoping the lack of the proper verbiage...where they were looking specifically for the word "benign" and it was hiding right there in plain sight in a "not malignant" costume wasn't going to poke holes in my bucket of pills. But, hey, if I didn't worry about that, I wouldn't be doing my job.

    I find out at the Research Department that they were trying to score me some more drugs to keep me from going into withdrawals and robbing a bank to get my next fix. They said Novartis was having to overnight them because the research medicine cabinet was empty of the particular poison I'd been ingesting.

    Depending on what all they included, I might be invited to come up as soon as this Wednesday to spend six hours getting my vitals checked hourly (a.k.a. the Extension Phase Randomization). Otherwise, it could be next Monday. But either way, I'm in the club...as long as Novartis understands -- and accepts -- not malignant as a good thing.

    I'm giddy with excitement and my back is hurting like someone used a post hole digger on it, but everything seems to be falling into the place I wanted it to.

    For all you well-wishing prayer sayers out there...THANK YOU! It really means a lot to me and while I'm not of the church-going organized religion type believer, I do believe, and I do have my communion with the Almighty on a regular basis. Yesterday he rode shotgun on the way to Jacksonville and I talked his ear off about how grateful I was for the way everything was seeming to work out.

    He didn't say much, he just smiled and nodded a lot, but I could tell he was happy I was happy.

    Wednesday, September 3, 2008

    The Plan

    I made a persistent pest of myself along the lines of a mosquito that buzzes in your ear but narrowly avoids the deadly swat each time. It paid off. I finally got to talk to a human. However exasperated with me she might have been, she was professional and didn't show it.

    I got my appointment for the flea-ectomy for this coming Monday. My social calendar (otherwise known as the noaa weather chart) shows I'll be free that day as Hanna should be bothering the nice people in New England by then while Ike will be fashionably late. Perfect!

    That will be September 8th. By my calculations, the 16th should come on or about 8 days from then. (I didn't mention I'm a mathematical geenyus, did I?) When I asked if the pathology would take a week, Tiffany said "Oh, no! It shouldn't take that long!" (famous last words).

    So now I wait. I think on Monday I will beg the doctor to throw his weight around and tell the lab "STAT!" Why can't I have House's team of doctors?? They do their own lab work and con and connive to get results from other tests within the 60 minute confines of the show. **sigh** I mean, my life's a soap opera anyhow...what with all these cliff hangers.

    I have a good feeling. I just hope I can maintain that good feeling after Sunday...when I take my last pill.

    Drama is my middle name



    Apparently.

    I've been waiting ever since a week ago this past Monday to find out the pathology on those 3 flea specks I had biopsied, and I finally get a call yesterday. It's the doctor's nurse calling to tell me that all 3 were "atypical dysplastic nevi" meaning they aren't cancerous but could someday evolve into cancerous moles.

    She then said that two of them were cut completely off while they didn't quite get all of the third one, and she wanted to schedule the "excision". I paused for a beat as I took it all in. Especially that last part because the word I heard was "exorcism". That'll make your head spin!

    Anyway, I ask her if "atypical dysplastic nevi" were benign creatures and she put me on hold to go ask the doctor. He speaks their language I guess because she came back saying they might someday have turned on me, but as they were, under the microscope, they had come in peace.

    So I call the clinical trial coordinator, all excited with my news, and she said she had the path report in her hands and was looking at it. She was confused because nowhere on it did she see the word "benign".

    She fired off an email and copy of the path report to Novartis to let their safety control guy take a look and decide if it's safe to let me enter the extension phase.

    I get a call this morning and as it now stands I have to have the excision done and have the path report come back saying they got it all and that there was no malignancy....all before September 16th.

    So here we go again! I have left a message on the dermatologist's head nurse's answering machine saying it's critical I get this cut off me and the path back A.S.A.P. so I can stay in the study and that I will go to any office (they have 5 and the doctors travel between them like nomads) and it can be any time (NOW preferably).

    The clock ticks, I sit and wait. I feel my very LIFE hangs in the balance here, or at least my quality thereof. I'm a Fingo Head and I'm not ashamed to admit it. It's my drug of choice and in 4 more short days I will be OUT of Fingolimod.

    From what I have heard and read, it's okay to go without Fingolimod for up to 7 days. If you go 8 days, however, you have to be closely monitored for adverse cardiac events as it will once again mess with your heart rate and/or blood pressure.

    Just the stress of all this being yanked around about a couple of skin specks has been enough of a test of my heart rate and blood pressure. I can't take much more.

    Oh, and there's 3 tropical storms headed this way and I will have to worry about driving around in them again. That little girl on the salt box sure got it right.