game-changer

sometimes i get a nagging little feeling that tells me i was meant to wind up where i am, that this was pre-arranged instead of an unlucky draw of the short straw, a time continuum explosion-esque, accident of epic proportions type of thing. lucky for you, i'm embarrassed to cop to a few- they're so small and relatively unimportant that you'd probably think i'm more crazed than you already do. but lumped together... well, it's a theory anyhow.

quick survey: who here hasn't met my family (or at least know of my family, heard stories about my family, you get the drift)? anyone who hasn't played a game of 20 questions with my mother (except you don't get to ask any questions- sorry, house rule)? oh- and here's a classic one: who hasn't had money slipped in her purse or shoved in their hands just by stepping in the apartment? received thank-you notes for being friends with me? (i'm serious.)

i've always had popular parents. growing up, i'm almost positive i was annoyed by this- or make that embarrassed. "maaahh-om, we're talking!!!" (actually, i have a brief memory of getting mad at her once b/c she was the only mother who wore "cool" clothes!) not surprisingly, and as most kids/teens do, i took such an honor for granted with an eye roll and flip of the hair. but over the years, i easily grew into the compliment- and now i practically brag about it. in college, i enjoyed mom and dad's visits as much as my friends did- i loved showing them off to my roommates and coworkers at the student union desk (or the occasional bball game i'd manage to score tix to). friends would arrange to stop by at some point to visit, and almost everyone managed to score an invite to a dinner out at one time or another.

they know all of my friends names, what they do for their job, where they're from, what's going on in their lives. (it's a running joke that my mom will know everything about you within the first 15 minutes of meeting you.) they know my coworkers and my neighbors, they're invited to almost all of my friends' weddings, they send birthday cards and baby gifts. having guests over to dinner almost always involves story telling. in fact, it was just recently that dad tried to make that illegal getaway at the falls church park & ride lot. and poor mom- such an easy target (and thankfully a good sport). we still give her hell about backing the car into the stop sign or the infamous "cell phone" drama- and those were at least 10 years ago! but dad is an equal souce of comedy- like when he got the Budget truck stuck in the snow from his brilliant scheme to unload my furniture or when he recently got run over by his own lawn mower in the backyard. oh, and if mom allows him to tell them, he has great stories from his college days (my favorite involves the alcoholic house mother, a water hose, and the top floor of the fraternity house.)

but let me try to get to the point. all of this hasn't stopped me from being jealous of those whose homes are crowded with multiple brothers and sisters, with grandparents still alive or that lived close by when growing up. i'd listen enviously to friends' stories of multi-family reunions and birthdays, and coworkers' plans for thanksgiving and christmas festivities with aunts, uncles, cousins, the whole works. the jealousy stems from the size of my immediate family- it's just mike & i and mom & dad (plus a never ending stream of animals.) the extended part of our family lives all over the country- illinois, indiana, california, arizona, iowa. sure, a good excuse to see the countryside, but expensive for a family of 4 to travel so far, and for some reason we have always been the ones to do the traveling. and after our grandparents died, any obligation to see one another seemed to become even less, so this little family of ours became everything.

when my grandparents died, i was still a self-absorbed teenager who could hardly get through my own grief, let alone grasp the concept of how hard it must have been for my parents. but as i've gotten older, i have revisited that time. but instead of thinking about my grandparents, i am thinking about my parents. i'm starting to have some idea, and that terrifies me. my parents have shed the blanket role of "parent" and have taken on these roles that i never imagined possible! i'm learning things about them i never knew before (sometimes way more than i want to know, but that's a story for another day).

as i type this, there's a thought at the back of my mind that keeps pushing its way forward- a little voice that says "but meg, if you're getting older, this means everyone's getting older, this cozy, intimate family won't always be around..." and i can feel my heart start to beat a bit faster.

being diagnosed with a chronic disease changes every single aspect of your life. you can kid yourself all you want (i'm not being critical if this happens to target you- that would be the pot calling the kettle black) but you'd be a liar if you couldn't name at least one thing that has been affected. for me, a realization of and a subsequent shift in the importance of family began to occur. i have this family that stopped their lives to come pick up the pieces of mine. pause. my family dropped what they were doing to come do what i could not. this was mind blowing to me. sure, everyone sees their family as a part of their life. but until that moment, i had never seen my family as my life.

again, that uncomfortable feeling... what am i going to do when- what the hell? i just came to this realization, can't i wallow in the security and support for awhile? like most good things, i didn't have long to do so. the quiet possibility became more of a "slap you in the face-cold water shower-5am alarm clock" reality this spring...

dad was diagnosed with cancer this april. yep, the big C word. prostate cancer. they say that prostate cancer is one of the best cancers to have. well let me ask "they" a question- have you ever had prostate cancer?! who the hell wants cancer in the first place?! the diagnosis hit hard, and all i could think was "NO! You can't do this to me! I can't handle this now!". ok, wait a minute, did i just say "ME"???? how selfish is that?! i was wracked in guilt over this- dad has made sacrifices for me, dropped everything for me, is fighting so hard for my treatment and doing everything possible to aid in my recovery. but when it's my turn to return the favor, to be strong for him, all i can think about are my own feelings of fear! but adding on to the fear and the guilt, was anger. i was so furious with the biopsy results, the pathology reports, the doctor, the universe... is there anything else i can be mad at? it had to be wrong.

and then i began to play the "what if" game. one such what if was what if i was still in dc and dad had called me with the news? most likely i wouldn't have answered my cell phone, so he'd leave a message to call him when i got a chance. in addition to not answering the phone, who knows when i would have listened to my messages- maybe a week? but when we finally did connect, i'd immediately want to come home to spend time with my family. (obviously such a move would not have changed anything, but there's a sense of comfort in such solidarity.) but there's no way in hell i would have been able to- april/may are (2) months of pure hell on my old work team!! the client's annual convention takes place, and if that's not enough, we'd be in the throes of the annual competitive research and presentation in addition to final tv edits for the summer launch. 65 hour work weeks don't mix well with askin my teammates to pick up the slack during my absence. another reason my theory at the top holds true.

but then i said it. i said the phrase that i NEVER say... "it isn't fair!!!!!" (i might have said "this is so f'ed up" too, but for PG rated sake, i'll leave that out.) it's not fair is quite frankly a phrase that is overused, and one of my pet peeves besides that (along with "i'm bored").

i never use this complaint in regards to my own life, but it didn't stop me from smacking it down instantly when it came to my father. wasn't it a more appropriate time than ever? i felt the unfairness of the situation seeping into all of my pores, swirling around over and over again- it was all i could think of!!! hadn't he gone through enough in the past year? what had he done to deserve such treatment? okay, okay, i'll admit- being his daughter it's possible i could be a tad biased. but here's the thing. he's quite simply the best man i have ever known. he's fair, he's kind, he's generous, he's loving, he's genuine, he's humorous, he's intelligent, he's hard-working, he's honest, and what i most respect about him- he rarely speaks a bad word about anyone. (unfortunately i didn't inherit this character trait, since i am the first to scream and rant about whoever pissed me off most recently.)

some type of alternate universe role reversal must have gone into effect, b/c i had a glimpse of what it feels like to be a parent. a moment of overpowering and intense realization that the importance of your life suddenly pales in significance to someone else, and an understanding of how my parents must be going through with my ongoing struggle against the MS. as far as dad's condition is concerned, there is nothing but positive outlooks on his next steps- he's a candidate for any of the treatment plans, he's chosen a nationally respected cancer center to work with, and he has no outward physical signs or complaints of the diagnosis. but it made things very real for me this spring, and all the more appreciative of this "short straw, a time continuum explosion-esque, accident of epic proportions type of thing."

“No matter what you've done for yourself or for humanity, if you can't look back on having given love and attention to your own family, what have you really accomplished?”

-Elbert Hubbard

X-Man Stealth

Suggested Stealth Action Figure

i've decided that MS should be given a character in the x-men comic team- one with the ability to become completely invisible, invade victims silently, and vanish after they've wreaked havoc. x-man "Stealth" ... i like it! it has a nice ring to it! but those of us in stealth-anonymous don't talk much about his attacks. can you blame us? besides being totally embarrassing, it can make you feel like you're a disgusting, powerless child. not to mention, they're not exactly topics that are dinner table appropriate or used as a pick-up line at a thursday night happy hour.

and it is true- there is an obvious stigma associated with these type of afflictions. but, hey, i've been known to share too much information at first introductions, so why stop now? so the truth is, i've been having some... "GI issues." (clearly spurred by Stealth himself.) don't worry, i'm not going to get too nitty-gritty with the details here- i'll be as vague as possible, and you can feel free to use your imagination...


battleground setting: some of my nerves are damaged (you don't say). and some of these damaged nerves aren't in ideal locations (shocking).

attack mode: some of my precious damaged and lesion-filled nerves have decided to send their little coded signals to my bladder and bowels at incorrect times, which in turn causes those muscles to work with little or no warning. OR the same rattled nerves fail to deliver any messages at all (what the hell are these retarded nerves doing attending a damaged nerve support group? having a date auction with the non damaged stud nerves?)

YIKES! CODE RED! we are now dealing with either a backup problem or a total flood, depending on which of the above mentioned scenarios are playing out. now, this alone is enough drama to deal with. but as the backup continues to build, instead of work itself out, the damage continues to my bladder/bowel muscles themselves, and they become too weak to do their own job (for example, emptying)! i'm telling you guys, it's a consequential shit storm (get it?) with a never ending bag of tricks.

analysis: i'm consider myself to be an understanding person- i'm even changed the rules once in awhile. but dammit, not always! and none of those situations are occurring at appropriate times. come on- there's nothing hotter than strapping yourself into an adult diaper before you slip that nightgown on and slide into bed. (at least they had velcro straps you could make tighter- can you not find Depends in an xsmall? or that don't have a huge "frontal" area? don't they make these gender-specific?) the up side of this is i'm obviously not bringing men home these days, phew! (just kidding mom & dad!!!)

present day: today i had one of the yummiest and creamiest barium cocktails i've had the pleasure of receiving over the years. and they were nice enough to serve me 3 times! yes, you guessed it- i had a CT scan. fun times. now, in dc, i'd pick up the barium in advance, mix it up the day of, gulp it down an hour before while still at the office, then run over for the 10 minute scan. apparently they don't adhere to this option in lewisburg.

i had to "check-in" and "pre-register" at the local hospital 2 hours in advance, which consisted of "yes, my name is meggie morgensen" and "yes, that is my phone number, thank you!". afterwards, i was taken to the CT waiting room, where a nurse served my first cup of barium. at first sip, i was pleasantly surprised by the taste- it had improved from the fake raspberry flavor i had at fairfax radiology last year. it tasted like a watered down cake mixture- almost like those ones you whipped together with easy bake oven as little girl (i loved those!) well that quickly wore off. i was served a cup every 15 minutes, and by the 3rd, the thought of cake mixture made me want to vomit. then, i was escorted to yet another room, this time to have my IV put in (the contrast solution) by another nurse.


pause by the way, she used a local anesthetic before she inserted the IV- i barely felt anything at all! i asked her what trick she used for such an easy insertion, and she told me about the Novocaine. i'm surprised that more doctors/nurses do not use such a process, however i'm sure it "affects the budget" and therefore dismissed. resume


back to my marathon CT process. finally, the last cocktail was served and i was escorted by yet another nurse to the scan room. i was pleasantly surprised to meet the radiologist- he was damn good-looking, and obviously smart- hence his profession (knowing this town, i'm sure engaged or has some live-in skank, err, i mean girlfriend.) finally the damn machine whirred to life and the happy little green face smiled as it instructed me to breathe in and out. the CT scan itself took MAYBE 10 minutes. a different nurse escorted me back to the waiting room (i swear the nurse population there must be off the charts) and pleasantly explained to me that the barium has a laxative in it, so i would be feeling the repercussions shortly. ha. she doesn't know my screwed up body, but i gave her an understanding smile anyway. (the laxative never kicked in. it was probably blocked by Stealth.)

if you're wondering the reason for the above explained medical test, then you clearly haven't been paying attention. jk. i had pleaded (again) with my internist that the situation was getting out of control and explained (again) all the symptoms the best i could. unfortunately, due to the amount of medications i am on, having ms, and the high powered Tysabri medication, the doctors' have been hesitant to single this out. i don't blame them- there's just too many options, and until either my meds are reduced or i have more experience with the Tysabri infusions, it's almost a waste of time to investigate. in other words, continue to suck it up meg!

but this time, i had an in. she was concerned with an area of tenderness on my lower left abdomen (and by tenderness, i mean PAIN) and scheduled an x-ray, which showed some type of mass. the CT scan would give them a much clearer picture of what *might* be going on. between last friday and today, i was told to only eat "bland foods" which was somewhat hilarious, considering i already don't eat gluten (how much more bland can you get?!) and have even cut down further since anything i eat gives immediate cramps or further consequences that you might imagine from my writings above. i'm not banking on an "ah-hah!" moment from this experiment, but i'm thankful she was concerned enough to try.


for those of you that are still with me, i applaud you for listening patiently as i frankly outlined bladder and bowel issues and how they interact with the central nervous system. we're practically family now! but to clarify, MS is just one of the reasons these issues can happen to people- over 2 million americans are dealing with this shit (again, get it?! sorry, i couldn't resist)- it affects their entire lives...social, physical, and even work activities. so next time you see your coworker, let him/her know that you are open to discussing their incontinence problems around the water cooler. make that open atmosphere happen people! ;)

finally, some good news. want to hear it?

operation natalizumab #3 has officially been completed.... and guess what?! NO NAUSEA! (well so far- everyone knock on a piece of nearby wood IMMEDIATELY) marylee- do a cartwheel. kate- pop open the vinho verde. claudia- dance on a table. selena- crank up the music.

oops, i better catch everyone up. (i tend to get carried away- when i was working, i'd start talking "agency speak" and throwing around acronyms and advertising words like they were popcorn kernels while everyone looked at me blankly.) natalizumab, aka tysabri is the new kid on the block of MS treatments. like the existing (4), it is also a disease-modifying monotherapy treatment, but instead of a self-injection, it is given monthly by an iv transfusion. but that's not the only differentiator. it beat their pants off. data from the 2-year trials, resulted in 42% reduction in disability progression and 67% reduction in relapse rate. that is HUGE! (Note: You can find more information on the nitty gritty towards the end of this posting.)

allergic reactions associated with tysabri have been generally mild (only 7%), such as hives, dizziness, chills, low blood pressure, nausea. for some reason, i always fall in that 7%. of anything! and those of you that have ever been nauseous before know what i'm talking about. it's the WORST! unfortunately, nausea has plagued me since the 1st infusion. honestly, i'd rather vomit for a straight hour than feel like i'm about to lose it at any moment for a week straight. (i've had other side effects too, but somehow dizziness, itching and chest pain seem to pale in comparison.)

but with the drug being fairly new, and with the percentage of people with side effects being so low, my DC neurologist was hesitant to give me any medication- i never did understand that reasoning. the first infusion they said "well, wait and see if it goes away." (that was a blast, let me tell ya) the second infusion, the nurse wrote a script for reglan, but told me to "only use it if i had to" and that the side effects were "worse than the original complaint." (hmmm, this was a quandary)

so going into the 3rd infusion this morning, i was ready for a fight. i had decided i was going to stand my ground and DEMAND medication for the nausea. but i didn't get the chance! the oncologist and his nurse didn't even blink, and quickly researched the right med to pump into my iv. i was momentarily stunned- doctors' offices aren't supposed to be nice. what the hell! (they gave me aloxi, and it should stay in my system for 5 days.) btw ML- the oncologist had his medical degree from jefferson!

the place was jumpin' and apparently i've been spoiled with private rooms the past few months. all in all, the pre/post observation plus medication time takes about 3 hours, so i had a couple roommates that came and went during that time. one had zero manners and triggered one of my pet peeves, a term i call "gutter english." give me a break- we'd been up since 6am, had to drive the 1+ hr/back, sit through a late consult and quite honestly, i don't LOVE getting poison pumped into my body for hours at a time. a little peace & quiet shouldn't be too much to ask. but i was treated to a chocolate Arby's milkshake on the ride home so i clearly got over it.

when the drug switch was going down, i was told by my DC/Georgetown neurologist (Dr. Wallin) to expect a full 4-6 months of treatment before any results- if there were any at all. to be honest, i didn't hear that end disclaimer very much, and as magic # 4 comes over the horizon i find myself more and more hyper focused on my condition. i keep telling everyone else (and myself) that i don't expect to wake up one morning, throw my legs over the bed, and be cured... but... there's that little part of me that does. ms attacks come on so suddenly- it's really hard to make people understand how quickly it can be. for example, i can tell you the exact date, the exact time, the exact place, that the shooting and stabbing pain in my legs and feet began. it was just the opposite of that little hope inside of me wishes for.

it was saturday morning, april 23rd, a week before eleanor and daniel's wedding. elle had gone home for last minute wedding preparations, and daniel and i had wound up having an impromptu bachelor party for ourselves. as was a usual weekend habit, i spent the night in their guest room (kate's old "love hut") and beau the labradoodle burst in with the energy of 6 straight espresso shots. i received a super wet love lick right on the face. i heard daniel rummaging around, so i tried to hold my head together (the shots the night before had been let loose in my brain apparently) as i jumped out of bed. but the jump didn't go so well- the pain was so intense that i crumpled to the floor. it was that quick. and from that day on, it just got worse. that's why it's a tucked away fantasy of mine that as quickly as that horrible experience set in, maybe it could just as quickly leave?

the decision to go on tysabri was a no-brainer for me, but it took my family and a few friends, a bit more convincing. just as quickly as news of the medication's success spread through the MS medical community, there was equally as bad news that jerked the drug from the market- 3 deaths. clearly, it's a pretty hard core medication- and by hard core, i mean there's a fatal side effect involved. the never-ending paperwork itself practically screamed the risk in every paragraph- RISK OF PML!!! i had to initialize every few sentences that i was aware of the RISK OF PML!!! a few times i felt like i was updating my will and signing away my power of attorney due to the RISK OF PML!!! (PML is a viral infection of the brain by taking advantage of a suppressed immune system- infections result in severe disability or death.)

i know what you're wondering. if there are (4) other drugs that can take care of my MS, why risk it with this one?

the real dirt on the trials
i believe that all MS drugs are a crapshoot. on average, they reduce attacks by approx. 1/3 in a lifetime- but here's the catch. no one can predict how many you're going to have! you could have 40, you could have 4, you could have 67. and those remaining 2/3 are still devastating, with the capacity to leave you with temporary or permanent side effects.

unfortunately, 3 of the 1869 participating tysabri patients did develop PML and die, resulting in roughly 1 in 1000 chance of contracting the fatal condition. but the trials were only done for 2 years- and they're still going through all of the tiniest details and micro analyzing the studies. the pharmaceutical company is SUPER vigilant- your doctor has to recommend the aggressive treatment, there is endless paperwork to complete, and the entire medical staff has to be trained and educated on the drug.

the ideal candidate
when i was first diagnosed in '04, i was young, scared and uneducated. i didn't understand that i could still choose my lifestyle over my treatments. the doc shoved a starter pack in my hands, i glanced at the brochure, i winced as the nurse showed me how to use the injection needle, and that was it. i'm not saying i made a bad choice, or that the doctor led me down a wrong path, not at all. but if i knew then, what i know now, things might have been a lot different for me. i know that you can't make up for lost time, but i can take a few things into my own hands- this is one of them.

and i have my youth & health working in my favor. you think i'm joking, right? no, i'm completely serious! despite my neurological condition, cognitive symptoms (i hesitate to say damage- it's hopefully not permanent), and physical challenges, i'm considered healthy. (trust me- with the exclusion of death itself, the side effects can't be worse than what i already endure.) i can't believe i'm saying this- but my single status has paid off! i don't have a husband, children, a house, a job, to be responsible for right now. to put it bluntly- i can be aggressive and selfish right now.

the bottom line
all in all, i know what this disease will end up doing to me. MS is chronic and progressive disease, and in my case, active. i know that i'm going to get worse as i get older, that the damages my own body has done to my nervous system are going to add up. MS has done and could do drastic things to me, and i want to beat it to the punch.

by the way, all this medical jargon can be confusing, and that keeping up with all of my sob stories and physical woes is hard to explain, so i've developed a cheat sheet. check it out when you have a few.