Sunday, January 22, 2012

Almost forgot I have a chronic incurable disease.

Some may have noticed that I've not posted in a very long time and I feel a bit guilty about that since I promised (myself anyway) that I'd document my experience in the Fingolimod trial. All I can say to defend my gross negligence of that task is that I've been too busy living normally to post much about MS. So normal has my physical being become that I often forget I've got a debilitating disease! In other words, the mystery drug has been a resounding success for me, and many others apparently, since it is no longer a mystery and is available to the masses. Here is a brief list of all that has gone right since I started taking Fingolimod (aka Gilenya):

Major reduction in muscle spasms
Regained ability to walk/jog/work out without going numb; subsequent 30lb. weight loss
NO MS-related fatigue, ever!
Only headaches I've had were booze related
Have regained sensation in both feet/lower legs
Vast improvements in balance and coordination
Can go up AND DOWN stairs with speed and ease
No "cold water droplet" sensations
No problems with heat or elevated body temp, doesn't make me numb or fatigued anymore
Have not had a relapse/flare up/exacerbation for almost THREE YEARS (last one March 2009)

I am out of the trial now and have been prescribed Gilenya by my regular neuro. He seems pleased with my progress and talked with me about keeping an eye on side effects (haven't noticed any) and potential complications from taking the drug. He thinks there may be an increased risk for developing lymphoma because of the way Gilenya works. I am NOT stoked to hear that but figure that the benefits outweigh the risks. I have not been this happy and healthy, well ever. My husband and I are taking advantage of this time that my body is working to travel and adventure and DO and GO. Nothing like a few years of "sickness" and relative "disability" to make you remember that you gotta run out and do your living NOW when suddenly you are able to again.

All in all, things are good. I love that my body works and have little celebrations in my head when I'm riding my bike, dancing with friends, climbing the stairs to the top of the Arch du Triomph in Paris... My kids are healthy and happy and smart. My friends are fun, reliable, and stimulating. I love what I do for a living (even if I hate the short-sighted fucks that I work for). Being able to make plans with near complete confidence that I will be able to do whatever I make plans to do is a really good feeling.

In the spirit of full disclosure I feel I should give the list of MS symptoms that I do still occasionally experience:

Fleeting restlessnes in both legs
Rare small spasms in left hand/wrist
Occasionally still "trip over nothing" but I have always been clumsy. ;)

I don't have any of these often enough to think about my disease everyday. I take my Gilenya pill every night without even thinking about why because it doesn't require the kind of will power that a daily injection does. It's just something I do after washing my face before bed and I feel so good that it doesn't even occur to me that I take the pill because I have MS. My biggest fear is how I will react when I do finally relapse again. Before Gilenya I was relapsing every 3 to 6 months and EVERY time it hit me hard. I would "forget" in remission how much everything was a struggle and how frustrated and depressed I had been during the relapses even though they were only a few months apart. Now it has been three whole years! How deep will I plummet by the time the monster catches me again? I can never decide if I should try to remind myself that DOOM is coming or if I should just focus on living for today.

Saturday, October 31, 2009

Squahed tomatoes + sugar =

Ketchup (or Catsup if yer traditional).

Oh I know, it's been a long time since my last post and I'll make no excuses... well maybe just a few. I've been a very busy (and completely functional!) lass lately so there's been little time for blogging though I have logged in to read others folks' news.

First and foremost, I've been feeling really good! I've been in the Fingolimod study since March and aside from the relapse I had when I first started on THE DRUG, I have felt better than I had in a long ass time. Even my perpetual symptoms (muscle spasms, creepy-crawlies) have been nearly non-existent! The first few months of the study I had to drive an hour away for lots of tests and check-ups, but now I've only got to go every 3 months or so. Doing the same tests over and over has gotten a tad irksome, but it's worth it since I feel so good. I look good too. My most recent MRI shows lots of plaqued up OLD lesions, but nothing new or active. I went through the films with one of the radiologists I work with and he says things look good, and was genuinely pleased (and maybe a little surprised?) by how well I've been doing. I still have problems (like numbness and loss of function in my legs) when I get too hot, and my balance is still for shit but I can live with those things. More on my aptness to fall down later...

Excuse #2: I got a promotion! I got A LOT more responsibility at work, a WAY better schedule (finally!), a tiny bit more money, and an ass-load of work stress. I applied for the position mostly for the bankers' hours, and had some pretty stiff competition, but they picked me. I'm out of the MS closet at work and they still picked me! Ha! So far the job's been going pretty well even though I think it's steadily raising my blood pressure. I have also discovered that working normal Monday - Friday-9-5 type hours means that it's impossible to go to the bank or the doctor without missing work. It's pretty rad to see my family regularly, and to be able to sleep at night though. Fair enough trade-off, I guess. And it was a little rough at first because some of my coworkers were pissed that I got the job and decided to make a big stink about it. Honestly, that's just inspired me to kick more ass at work and made it more meaningful that the people who supported me (including the docs, who totally backed me up) had faith in my abilities.

Summer vacation with my husband in New Orleans was completely awesome. We had a blast in the French Quarter and happened to be there for the coolest week N.O. had this summer. We walked EVERYWHERE and I only ate shit once. It was really funny actually: The first few days we were truckin' around and Shiva kept a close eye on me. He was super-attentive to stuff like pipes sticking up out the sidewalk, slippery spots, and the jacked up streets of N.O. as potential hazards to my verticality. On day 3 or 4 he let his guard down, and I went down. We're strolling down Rue Burgundy across from Louis Armstrong Park and he points up at something on one of the balconies hanging overhead saying, "Look at that!" And I look up, just as I step into a hole I could neither see nor feel, and the next thing I know the street and I are dancing cheek-to-cheek. Totally twisted my ankle into a gnarly knot and scraped most of the skin off my other knee. It was a truly epic wipe-out and I unintentionally blamed it on Shiva. "I can't believe you didn't CATCH ME!", is what I said. Not only did he dupe me into looking up while walking, something we both are aware I'm incapable of on my best day, but he also got a few paces ahead of me. I'm accustomed to him walking a half step behind me on my right (my weaker side usually) even though I'm not sure he does this consciously. He's usually hypersensitive to my potentially falling over and I guess he just thought I was "okay." Well, he's cured of that delusion. He's gone back to being en guarde 24-7. We did have a good time coming up with crazy stories to tell people who would inevitably ask, "What happened?" He suggested one about my chasing down a homeless guy in a wheelchair that had stolen his camera. And another about a heated disagreement between me and the owner of a Korean grocery. I'm not that creative so I just stuck with the embarrassing truth. I was able to walk the rest of the trip and have yet another "vacation scar" to add to my collection.

Monday, May 25, 2009

I like walking. It kicks ass.

Let me take this opportunity to skip the whining for once and say something positive: I can walk (again) and I like it. Thus far, MS has only "borrowed" things from me and I'd like to say thanks to the hobgoblin for returning the items it took, still relatively undamaged. I know I tend toward ranting and cursing so I'm warning you that this blog will not be that. Don't go looking for rainbows and unicorns here or anything, but today I've got good things to say.

I've managed to come through another exacerbation without any noticeable permanent deficiencies. I've got the feeling back in my feet (except around the toes) and they aren't burning anymore. My legs are back to working reliably and the crushing fatigue has finally lifted. Now that I'm not so surly and defeated I can admit again that I have it much better than others and now find myself a bit ashamed of all my carrying on.

I have found myself in a better mood lately, but I'm a little suspicious of it's origins and timing. Is it the nortriptyline that I've been taking? Am I getting used to this bizarre schedule at work?
Even my husband has noticed my "better mood" lately. Wink wink, nudge nudge. I'm a bit wary because I don't think too much has changed. I'm still stressed about all the usual things. And I'm still not sleeping so good, but I haven't been sick, which is weird. The typical stomach bugs and colds and the like have plagued my friends, family, and coworkers, but I haven't gotten my share. Very strange. Makes me think that I must be on the placebo for the Fingolimod trial because I get the impression that the folks on THE DRUG catch every little thing.

I have an uncanny feeling of gratitude lately. I'm grateful for my job even though it sometimes sucks. I'm pleased as punch with my mother for taking care of the kids this summer, saving me tons of money and worry. I find myself smiling during the half mile trek from one end of the hospital to the other because I'm not dragging one of my legs or concentrating on landing. every. single. step. And I'm really quite pleased with how easily I can avoid the hazards of manuevering around the oxygen tubing and urinary catheters and velcro straps and IV tubing strewn around every single patient.

I can walk, and that's rad. I walked across the causeway in the middle of the night with my husband just for fun. I walk around the grocery store without having to lean on the cart the way I remember my grandmother doing it. I'm not staring enviously at House's cane anymore. (I actually started to imagine how much easier walking would be with a cane during this last relapse.) I'm going to New Orleans in July (yes, JULY. Yes, I know it'll be hot.) with my husband and I'm gonna walk all over the French Quarter so I can show him all my favorite places. I can again wear whatever shoes I want without worrying which ones will trip me up or be too "quiet" to help me figure out when my foot has hit the floor.

Being able to walk is the shit.

Wednesday, April 15, 2009

They say timing is everything, don't they? A month ago I started the Fingolimod trial, and a few days later I got a nasty cold (an expected side effect of the Fingo). A few weeks ago I developed a new symptom and saw the neuro, but was assured the new symptom was not a big deal. Three days after seeing the neuro my legs went wonky, and I couldn't get Novartis Chick to call me back. A week after that I could barely walk, and still couldn't get anyone to call me back. The last time I had a relapse/attack/exacerbation (whatever you prefer to call it) I was chastised for not seeing the MD sooner. My neuro told me I had kinda missed the bus on taking the steroids at a time that might've affected the severity of the relapse. THIS TIME I went to the neuro and called the Novartis study people right away and nobody paid it any freaking attention! I am so frustrated with this impossible game of timing. When is it not-too-soon-but -not-too-late to call about feeling like a steaming pile of shit? Why do I always NEED to call when the doctor is overbooked, out of town, or just not feeling very interested in me that day? I'm not a huge fan of the steroids, but I do wonder if they would've let me avoid limping around the hospital for the last 2 weeks and making me feel like a zombie for a month. Now I wonder if they'll do me any good now that I'm STARTING to feel a little better. The Trial MD says yes, my neuro says no. What the hell?

Because of this recent relapse, many well-wishing colleagues and family members have more probing questions about the drug trial and what made me decide to get in it. When I explain to these kind and worried souls that the trial is blind, and that I may be on a placebo for 2 years they just totally lose their shit. "Oh my gawd! What if you're going UNTREATED for 2 WHOLE years?!," they exclaim. And then I give them my reasons , none of which are as brave as Bald Ben over at Did You Know Montel Williams Has That? implied in his recent blog when he mentioned me so kindly. He is now thinking of joining a trail too so I thought I should post my real reasons:

1. I'm afraid of PML. I know it's unlikely, but people underestimate the persistance of my bad luck. If there's a chance of something going wrong, it will go wrong for me. Murphy's Law has apparently been ammended to my own personal Constitution. And I'm intimidated by the plan being to "monitor Tysabri users very carefully against the threat of PML infection."
Really? How are they going to do that? Because I've already covered the fact that I apparently don't know when to cry "HELP!" How crazy will I make myself on Tysabri if I have to be on the lookout for everything and nothing? Because I relapsed while on Avonex (which my neuro considers functionally similar to Rebif and Betaseron), and couldn't tolerate Copaxone, Tysabri is the last of the FDA approved DMDs for me to try. And I know lots of folks love it and have improved greatly, but the one and only real-life person (not to imply that you bloggers aren't REAL, 'cause I think of yous guys as friends) I know with MS has done horribly on Tysabri and had a really hard time even tolerating the infusions. Plus, it's so fucking expensive I'm worried about reaching my lifetime limit of benefits before I turn 40. I'm just not ready to get on the Tysabri train.

2. I won't be a viable trial candidate forever. Right now I'm young and relatively healthy. I know having MS doesn't put me in the ideal health category, but I don't have cancer, heart disease, vascular disease, liver disease, reduced kidney function, GI problems, GU problems, or even high cholesterol. There's no chance of my becoming pregnant or wanting to breastfeed ever again. I can still walk (most of the time) and drive myself to the myriad appointments I have to keep for the trial. These things won't be true forever so I know that if I'm gonna try a trial drug, now's the time.

3. Fingolimod is a PILL. That is hugely significant to me. I don't personally have an issue with needles, but I'm sure there are plenty of MSers that do, and I love the idea of helping give those folks some hope for an oral DMD in the future. I do really hate the idea of having to make an appointment for an infusion every month indefinately as well, which is another strike against Tysabri. (Despite the fact that I am perfectly capable of starting my own IV and running just about any liquid I please into my arm, there's no way in hell those TOUCH people are gonna let me give myself Tysabri infusions. I wanna hold onto my habit of autonomous healthcare as much as I can.) I'm stubborn and I'd rather just stick myself unless there's tattoo ink involved.

4. It's only 2 years. I had more confidence in this reason before I had my 2 most recent exacerbations. I find it very disconcerting that I had one start in October '08 and the next start in March '09. That seems like too many, too close together, too soon after fiddling around with my treatment options. On the other hand, it took 2 years just to get diagnosed with this damn disease. And in the big picture sense of your life span, 2 years ain't shit really. Jeez, those kids on LOST were off the Island for THREE years and they didn't even bring back longer hair with them. Although John Locke did go from alive to dead to alive again. That's a pretty significant amount of change and he wasn't off the Island as long as the others... whoa, I'm way off track.

5. The chances of Fingolimod making me feel like shit were very, very small. And it doesn't, if I'm on THE DRUG. I researched the potential side effects of Fingolimod and didn't find anything too alarming. Macular edema and increased opportunisitc infections seemed a manageable trade off for free drugs and testing. Both of which are being closely monitored during the study which means I get to keeping ogling the cute opthamologist they send me to regularly. And it gives me a viable excuse to avoid patients with Shingles at work. (Just Shingles though, the rest of the cooties I'm still swimming in with the rest of the fishies.) Also, the trial does not require that I make any lifestyle changes. If I hadn't quit already I could've kept smoking, not that I want to. I can keep getting tattoos and keep doing my low-cal diet (I've lost 11 lbs!). I can travel, skydive, or just take my kids to the beach. Though I'll keep staying under the umbrella and spraying on the sunscreen because there seems to be increased incidence of skin cancers in Fingo-takers. Altogther, they aren't really asking too much of me.

So there it is. Not particularly brave or self-empowered motivations to do the trial drug. My hubs did encourage me by saying that it could eventually help a lot of other MSers, and I do sorta feel like I'm honoring the memory of my granddad (see previous post here). I'm not sure hashing out all my sideways logic really justified a long-ass post like this, but too late to turn back now.

Tuesday, March 31, 2009

Burning and Freezing Redux

This time I cannot blame the Copaxone. I guess we're calling it parasthesia but I think torture is simpler and maybe closer to the truth. (Have you noticed my love of vocabulary? Sorry if it's annoying.) My feet have been alternatingly burning and freezing while simultaneously numb and tingly. Is it even possible for Normal People (non-MSers) to have this many differerent sensations happening in a body part at one time? This has been going on for more than a week and I have tried it ALL. I've tried warming up and cooling down. I've tried all the meds at my disposal. It seems to be worst in the morning, late at night, and whenever I'm moving around a lot. And it's spreading; north up to my knees at times.

It started right before I came down with Shiva's cold, and I told the Novartis Chick about it like, three days in. The Novartis Doc blamed it on my cold, ("Maybe you're running a fever," he says 5 minutes after the nurse had determined my temp was normal), but I was pretty sure he was wrong. So I went to my usual neuro. Usually I think of my guy as damn near sainthood, but this time he sorta looked at me in a way that made me feel completely pathetic and said, "You have MS, what the hell did you expect?" I'm euphemising of course, but that was the gist. He did NOT say that I was relapsing -I like to call it "backsliding"; I stole that from the Christians - or even having an exacerbation. He prescribed me Nortriptyline which hasn't made a lick of difference yet. In fact, it's gotten worse and I am standing on the precipice of contemplating amputation. I'm in the burning stage now and have just agreed to putting them in ice water at Shiva's suggestion. Okay, I put one foot in and he made the steam hissing sound effect, and now it just feels numb. Now it's that stupid feeling you get from IcyHot ointment. Alright, fuck this, let's just lop them off.

I called the Novartis Chick again today and she asked if I'd been having any other symptoms, like fatigue. I told her the other day that I have been pretty fatigued, but also having a hard time sleeping at night. She knows how wacked my work schedule is too, but this time I left out all the excuses I tell myself (other than MS) and everyone else for being tired all the damn time, and just admitted that the fatigue right now is baaaaad. She said she'd talk the Novartis Doc and call me back. Must've lost my number.

Tuesday, March 10, 2009

I've been randomized.

Randomization. The word is, thus far, more intriguing than the experience. For those who don't know: randomization is the first dose in a drug trial. It's when you are blindly given either THE DRUG or the placebo. (Sometimes it's blind, differing doses of THE DRUG.) Today is MY randomization day! I'm at the center where the study is being conducted for Novartis' FTY720 (Fingolimod) trial, being monitored for 6 hours after my first dose of what may or may not (Shhh! It's a secret.) THE DRUG. After much help from the nice IT guy here, I'm now slurping from their wireless trough, surfing their cable tv, and I even got a free lunch! (A big thanks to the radiology techs here for sharing their spread! What can I say? Radiology is a small and tight knit family.)

Just so I can satisfy the curiosity of other potential Lab Rats, lemme tell you about today so far:
Came in at 9am and met the woman who is monitoring me today. It has to be a person who's new-to-you to ensure "blindness" and objectivity. Had an EKG and was hooked up to the Holter monitor again. I gotta wear it for 24 hours again, but this time I got "stickies" that are for folks with sensitive skin. I was skeptical at first, but I am a hell of a lot less itchy than last time.
Waited for an off-site MD to read my EKG and get the thumbs up to dose. New Woman checked my temp, blood pressure, and heart rate (furthermore referred to as vitals) before giving me a small pink capsule to swallow with water. I worked last night and the ER was retardedly busy so I tried to nap, but couldn't overcome the espresso I had to drink in order to get here on time. Watched some of the Today show and Ellen, all the while having vitals checked hourly. I ran into some old friends from the radiology world and had lunch (always the patient and the professional). Finally got online, thanks to NO SKills of my own, and here we are.

Not only have I successfully not died, I feel fine. I think. I noticed my heart rate is much lower than usual, which is an expected side effect of THE DRUG. I told myself I wasn't gonna speculate about whether I was on the real thing or the placebo, but now that I've taken it I realize I was just bullshitting myself if I thought I wasn't gonna be hyper-self aware. I mean, I'm sleepy, which could account for my low heart rate, and the weird taste in my mouth could just be bad-breath, right? I dunno, but I refuse to go bat-shit crazy for 2 years trying to figure it out. "They" (other trial participants, people half a step removed from the study) have told me that THE DRUG is easily tolerated by most. Some have had nausea for the first couple of weeks, but I haven't (yet?). I do have a freakishly robust GI system. No really, I very rarely suffer any kind of upset stomach, gas, indigestion, food intolerances, or anything. I may be a flabby, limp noodle on the outside, but I am intestinally fierce!

We'll see. Doesn't that piss you off? Everything with MS is, "we'll see." "We'll see if this drug works for you." "We'll see if you can walk in 10 years." "We'll see if you can tolerate painful injections foreverandeveramen." "We'll see if they discover a cause/cure for this stupid disease." "We'll see if we feel like covering the costs of your prescriptions." "We'll see how tough you really are missy, 'cause your in for a raucous fuckin' ride now!"

Wednesday, March 4, 2009

Screen name: LabRat

It's been a while and I am sorry to have neglected you. I got distracted by Facebook after my mother dragooned me into joining, but that's no excuse. Also, I've been miserable at work and with the economy and just didn't feel it would help to indulge my misery in "print." Mostly, I've been busy getting all the screening exams for the Fingolimod trial, which is taking place about an hour south of me in Vero Beach, FL. I just decided to wait until I had completed the screening so I could unload all the details here at one time.

So far, so good. I've now had blood and urine labs, an extensive eye and optic nerve exam, a pulmonary function test, a high-resolution CT of the chest, an MRI of the brain, a skin survey by a dermatologist, a normal physical, a neurological assessment, timed walking trials, timed peg board trials, a memory test. Is that everything? Oh no, I missed the worst one. I also had an Echocardiogram, which is basically an ultrasound of your heart. All of the tests/exams were in different places, all about an hour from home. Inconvenient at least, but none took very long or were very difficult. Here's a rundown of how they went:

1> I had the initial meeting with the study directors who are very nice and accomodating. They asked about a gazillion questions, took blood and pee, and had me fill out a ream of paperwork. They have been very helpful setting up the appointments for all the other tests and rearranging things around my ridiclously complicated schedule. The neuro who's name is on the study did a normal physical and I was off.

2> The Hi-Res CT of my chest was uneventful, and quick. They even let me take a CD of the images with me although I'm thinking they probably weren't supposed to. They don't have any idea that I look at CTs all day, and probably assumed that a) I wouldn't know how to load the disc, or b) I wouldn't have any idea what I was looking at. Wrong on both counts, and I now know that despite ten years of smoking, I've got perfectly healthy lungs (and gorgeous clavicles if I do say so!).

3> The eye exam was the same day as the CT and mostly as per usual, except they did a test that creates something like a topographical representation of the optic nerves. The doctor was nice (and kinda cute!) and explained everything thouroughly, saying that there is thus far, no damage to my optic nerves. He said he'll be examining me repeatedly throughout the study. Then I had to do the hour-long drive home at 4:30 pm with my eyes dilated. Awesome.

4> The MRI was also typical. Quicker than usual, which I assume is because they do only the protocols specifically called for by the study. I'm guessing that will be repeated throughout the 2 years of the study too.

5> The pulmonary function test was done at a hospital so there were the usual hassles of parking and a long registration process that comes with going to any hospital. The respiratory therapist that adminitstered the test was friendly and funny, and apparently I can look forward to seeing him again and again. He said he's the only one who does the PFTs for the study. He also responded well to the whole "I-have-MS-and-here's-how-I-found-out" story. He said, "Alright, well, that's lame dude." This IS Florida and he probably actually is a surfer dude.

6> The skin survey was just what it sounds like. Except that I had had to drive a long way before stripping to my skivvies to get ogled by strangers. The nurse made comments on my tattoos, but not the dermatologist (much to professional, I'm sure). He started at my scalp and worked his way all the way down to the soles of my tattooed feet. He dismissed me with the comments, "The nurse'll give you some info about malignant melanoma," and "Nothing to cut on today."

7> The neuro assessment was pretty much the same as the usual one in my personal neuro's office, and was administered by a different MD than the one who's in charge of the study. She said it was to establish a baseline and will be repeated once more before I start on the drug. I did two rounds of tests the same day that included being timed while walking a prescribed distance, placing 9 pegs in a board and taking them out with each hand, and a memory test. These tests all have to be redone before starting the drug.

8> The echocardiogram was definitely the worst, but probably wouldn't be for other people. I just happened to catch the tech doing the test on what was obviously a bad day, and I think she vented her frustration on my chest. I could tell as soon as I saw her that she was flustered and I might've considered rescheduling but I'd already wasted two hours of my life driving there (and back.) The test is a little uncomfortable in general because you have to hold your breath a bunch of times and you have to just stop breathing. You don't get to take a breath and then hold it. Just trust me, it's more challenging when you just stop. But the really bad part was that the tech was just pummelling me with the transducer (ultrasound wand thingy)! Seriously though, my chest is bruised! Fortunately, this was the one test that my husband had ridden along with me so I had someone to complain to immediately, and then we had a nice lunch out and a chance to chat in the car.

9> I forgot to mention in the list before that I had to wear a Holter monitor (a portable heart monitor) for 24 hours. Wearing ten sticky leads for a whole day is itchy and annoying, but totally do-able.

All in all, the testing was no big deal, but driving back and forth is getting old. I gotta go back for repeats of the neuro test this week and then I'm scheduled for my first dose next week. I have to take the first dose (this is called "randomization") at the center, and then be monitored for 8 hours, just in case I have a reaction and try to die or something. They have cable and comfy armchairs, and wireless internet so I can bring the lap top and let you all know how it goes.