test tubing

of all the tests i'm frequently subjected to, the MRIs are my favorite. not only do i get to zone out and catch some peaceful zzz's, but the results of this exam are one of the most important and influential in regards to disease progression. (what i don't enjoy is laying in the claustrophobic tunnel for hours on end- i have to squuuuueeeeeeeeeeeeze my eyes shut the whole time so that i can't see the tube i am in. that way, i can trick myself into thinking i'm sleeping on a wide open table!)

tomorrow it's yet another trip to Geisinger Medical Center at 7:15am for my 6 month MRI tests. the actual test doesn't begin until 8:30, but they require me to check in at 8:00- not sure what we will do for the extra 30 minutes.... freshly flipped omelets in the waiting room? doubtful. a quick game of Simon Says with the lab technicians? um, no. watch the Today show and drink steaming cups of hot cocoa? definitely not. reviewing the same insurance information they reviewed last time? totally.

the MRI (magnetic resonance imaging) is an extremely important testing device in the world of MS. i just tried to count how many i've had in the past few years.... at least 17, but i lost count after that. MRIs are used in both the brain and spine, showing areas of demyelination (big white blobs on the x-rays- these are bad). by inserting a contrast into the patient's IV, the MRI can then show if any of those plaques are active (if the plaques "glow" this indicates active and usually a flare, which is also bad.) it's already obvious why this test is unique to tracking this disease- it can show both existing and acute plaques. most people with MS will have dr. ordered MRIs at least every year, if their disease is manageable and/or in remission. but if you have a more active form of MS, or have a treatment that requires frequent MRIs, or have a relapse, you will have more than 2 or 4 each year.

so tomorrow will be somewhat of a big day for me. yes, it is one day before my birthday, but i meant something even bigger (you didn't know there was something bigger than my birthday, did you? good answer.) the MRIs i have done tomorrow will be the first since i began the Tysabri medication. i did some quick search on the 'net to refresh myself with the results from the Tysabri trials. they are below:

"...an 83% reduction in the development of new or newly enlarging MRI-detected brain lesions. Tysabri also reduced the mean number of enhancing (active) MRI lesions by 92% after the first and second year."

obviously i'm not into a second or even first year, but the stats seem wildly successful. i always feel a bit nervous when i am put up against such proven success possibilities. what if i'm not? what if i'm the one patient who Tysabri doesn't help? what if i ruin others' chances to get Tysabri @ Geisinger? all b/c i didn't improve? but, it's normal to have those feelings, right? i want more than anything to be a success case for them, because that means they will allow more people to benefit from the medication, and that would be the biggest success of all.

so. i will go strap myself into that elongated tube and shut my eyes super tight for 2 hours. and i will keep everyone posted, although we won't have the results until early next week, esp with the Labor Day holiday. too bad they don't allow iPods in there- i could be brushing up on my French skills. so far, all i have mastered is "we are not Canadians."

so ya wanna be a human guinea pig?

(read the following in a fast-paced, nasal-ey pitch without regard for periods or other grammatical structures):

alrightyyyy folks, step right up to the newest attraction at the Geisinger Medical Center in Central PA. that's right it's the kind of creature you have never seen before, a breakthrough for science and mankind alike. never before this moment has one been observed from within their natural habitat. that's right folks we have it right here, right now. all for the price of.....

possibly contracting progressive multifocal leukoencephalopathy (PML) through a compromised immune system, an opportunistic viral infection of the brain that usually leads to death or severe disability.

yes, you guessed it- i'm talking about the "T" word. the same word that usually sends medical professionals, ms patients, and health insurance representatives scurrying for cover, shielding their eyes with the new york times and turning their iPod headphones up to MAXIMUM. well, i have some great news for everyone- i have been on Tysabri for 6 months and have not died. does anyone have a bullhorn? I'd like to borrow it for a bit while I scale the tower of one liberty place in philly, and exclaim "I, MEG MORGENSEN, HAVE NOT DIED FROM RECEIVING THIS TREATMENT."

don't get me wrong, i completely understand that doctors, hospitals, pharmaceutical giants and health insurance companies have to be extremely careful about these things. after all, they are usually the first to be blamed when a medication goes from bad to worse. so don't worry, i'm not on a soapbox today against the medical society. but i do feel strongly that if you are not being helped by your current treatment, you have the right to fight for one that works better. it is your disease, your body, and your informed decision.

when i first began tysabri, i was at the end of my time in washington, dc, where cutting edge healthcare is the norm. with such facilities as NIH, Georgetown University Hospital, George Washington Hospital, and Washington Hospital Center a mere cab ride away, i had many options on where to receive treatment. unfortunately, that wasn't the case when i moved to Central PA. for the past 4 months, we have been driving to harrisburg for the infusion treatments, an hour and a half commute each way. for me, travel is similar to stuffing your body in a barrel and rolling off one of the niagara falls. extreme comparison, but you get the picture.

although there is a top national hospital, Geisinger Medical Center, with an internal ms clinic, located in nearby danville, there has been a turf war over use of the infusion center. in addition, there is an overall uneasiness in regards to offering the controversial medication. for months, the hospital seemed to be siding with the oncology department, who has control over the infusion center. that mere fact that a debate had ensued over whose healthcare matters more- ms patients or cancer patients- is not only absurd, but seems to go against the ethical practice of medicine itself!

through a long laundry list of credits, the infusion center grudgingly agreed to do a trial phase of providing tysabri. depending on the success and ease of the first patient, they would expand the program to one patient at a time. and YOU are lucky enough to be looking at (ok, reading from) the ms clinic's official tysabri guinea pig. mom & i spent the majority of the afternoon with the nurse practitioner, sharon, and my new MS specialist, dr. carl. (i cannot pronounce his last name due to my lovely ms induced speech slurring, so i asked if i could be a bit informal- he gave his permission!)

besides the pre-tysabri clinical exam (including my favorites- the safety pin and finger to nose exercises!), scheduling upcoming MRIs, visiting the local vampire club (aka getting blood work), and reviewing medication lists, we had to have the "frank PML discussion". this is where i have to look each person in the eyes (the NP, the doc, my mom) and state that i understand there is a chance i could contract PML, and that i am aware that PML is fatal and incurable.

and to be honest, it's easy to get the "it can't happen to me" false sense of security since i have already been on the medication. except the usual nausea, headache, vertigo and minor allergic reactions that are short lived after the first day, there have not been any adverse reactions. but when you have to be completely serious, and say out loud that there is a chance you could, well... die. then it becomes real.

however, i still feel the same way i felt in february when we began this journey. i want to have a life worth living, and until the scientists and researchers cure my disease, this is the only chance i have. and i'm going to take it, risks and all.

MAJOR ANNOUNCEMENT: Meg Conquers All

ok, so maybe the title was a bit overdramatic. i didn't quite conquer the entire world- just the recumbent bike in the Bucknell gym that has been the bane of my existence since May. picture this:

meg enters the bustling gym in her cute black yoga capris and a loud UNC tee, paired with a crop top gray hoodie and her suede Reebok kicks-- oops, wrong narration. this is about exercise, not fashion. let's try this again.

meg enters the gym, still looking totally cute in the above described outfit, and heads towards the recumbent bikes that create a long, menacing, line as far as the eye can see. they exude perfection and raw strength, luring the innocent passerby to hop on for a quick workout. she's tempted to swing her cane back like a golf putt, imagining the metal bashing into the ugly, gray base over, and over, and over, and over-- sorry, getting carried away. her legs swing over the seat and she slides the bar into position #13, her heart racing and palms sweating.

thoughts begin to push their way forward, revealing her previous relationship with this machine- hours of intense spinning classes flash before her eyes. she remembers racing over a hill with ease and enjoyment during a sprint triathalon in college. or when she and daniel had raced to mount vernon one hazy afternoon. it had always been so easy, so assumed that this simple machine would always be mastered. she squints her eyes closed and shakes her head slightly, trying to force those memories from her mind. the gym is full of fit young college students, and if she didn't know better she would think she was at the SRC on the UNC-CH campus. although the endless population of suntanned, bleach blondes in their swinging ponytails and pink shorts with sorority letters on the rear was significantly.

she takes a deep breath and grips the handlebars with an intensity that startles her for a brief second. suddenly, her legs are flying forward, the pedals rotating in circular motions, as her eyes pop open and her mouth drops down in surprise. the pedals continue to move, almost like a life of its own, and she looked again to confirm it was her legs making the familiar circular movement. she was doing it! she had conquered the recumbent bike!

oh wait,... oh dammit... the pedals are slowing down, it's becoming harder to push. are weights tied to these damn things? move, please move. come on- she had just done it a moment ago. she swore she was. she checks the console's blinking "workout summary", and scans to the time portion. 30 seconds. that's all? she remembered when 30 minutes was part of her "shortened" workout. but, she could accept 30 seconds. last month she couldn't even do 3 seconds.

she smiles to herself victoriously. she had won, if only for a few seconds.

Meg's Summer Guestbook Expands!

Guestbook Update: June-August '07

everyone gets their due, at least via this infamous blog! i'm continually blown away by the efforts so many of you have made to stop by, come visit, send cards, gifts & flowers- i look forward to the mail with such excitement. it was no wonder that the first "walking excursion" i've accomplished is getting the mail each day. sometimes with the cane, sometimes without (depending on how i'm feeling.) but when there is something in there addressed to me, well... it more than makes my day. (just a disclaimer- some of these guestbook entries weren't entered here in L-burg, but they deserve to make an appearance.)

6.28/29.07 holly & matthew shaw (arlington, virginia)

holly is the official ambassador of our frequent traveler program, and will now receive double points for future stays at the morgensen ranch. this time, she brought matthew along for the fun (lured mostly by the prospect of our ever popular dog.) best quote occurred when matthew exclaims "her teeth are really dirty!" at his first introduction to madisen. he kicked my @ss in mancala, which has apparently upgraded from plain ol' stones to intricately designed, multi-colored animals and introduced me to the world of captain underpants. i tell this to holly often, but he is so smart, considerate, cute, good-mannered- basically i want to clone and preserve him until i'm ready to have children!!

7.14-18.07 aunt mary (carmel, indiana)
i have to give her kudos for expertly managing one of the worst weeks i've had in 2007- and wanting to come back! she survived a visit to the ER, multiple trips to the doctor, just as many phone calls to the nurses, daily treks to CVS, my hysterics (let alone what mom was going through), dad being on drugs (he had his wisdom teeth out), and nothing touristy or cultural whatsoever. (although i'm sure she saw an amish buggy or two at some point!) at the end of her trip, dad arranged an evening road trip to state college, where they discovered photos of my grandfather and his '38/'39 baseball team on the wall in one of the gymnasiums on campus!

8.2- 5.07 patty & bryan ledford (chapel hill, north carolina)

this time we were the ones on the road trip- an 8 hour road trip each way. (by sunday, i didn't care if i ever road in a car again.) i honestly don't know how i ever put up with such a hectic pace and an insanely busy schedule. i'm 10x better than this time last summer and it still exhausted me! we stayed at the ever beautiful and iconic carolina inn, where our room was twice as big as my entire d.c. apartment. unfortunately, this huge suite was quite possibly a MILE away from the entrance to the hotel and the reception site. our handicapped accessible room also came with a wheelchair, which my bone tired exhaustion succumbed to using. luckily, we had the plan down pat- i'd hop in the chair, the lucky chauffeur would wheel me through the lushly carpeted hallways, and i'd hop right back out before turning the corner to the "outside world." (using a cane at my age gets enough stares- you can imagine what a wheelchair elicits.)

okay, on to the wedding activities. we had lunch with the bride on friday afternoon, kim & i set off to the rehearsal at the chapel of the cross friday evening, we hooked up with the rest of the bridal party for the rehearsal dinner at the weathervane, i had my makeup done with sandy & patty early saturday morning, the ceremony was at 10:30, and the reception immediately followed at the carolina inn's main ballroom. (i did have to sneak in a nap after cake but before dancing!) before heading out of town on sunday morning, the kendalls (ralph & carol from high point, ben & leanna from chapel hill) and patina joined us for breakfast in the carolina crossroads. oh- random inclusion!

8.4.07 john, sally, erin & michelle york

in the same priority level as the wedding was fitting in a visit with the yorks while we were in chapel hill. sally graciously invited us over for dinner, extending the invitation to mike, who was living in high point for the summer due to an engineering internship. our timing could not have been better- erin had just arrived home after a 13 hour drive from cleveland, where she was interning at an equine therapeutic center. i've been missing my "second family" ever since i graduated in '02 and left for d.c. in '03. one of the best parts? sally had made sure the ENTIRE meal, from appetizers to dessert, was gluten-free. and after picking at my gluten-filled food all weekend, i was starving!

week of 8.12.07 team arnold airmail!

i woke up from an afternoon nap last week to find a large archiving box in front of sofa from claudia @ arnold. i didn't think much of it, and to be honest, i wasn't going to open it right away. i assumed they found some old files of mine, or perhaps one of my desk drawers had not been cleaned out. curiosity got the better of me though, and i started to slice through the endless rolls of tape to pry open the lid. there was not a file to be found! instead, it was a giant care package, with members of my old team picking out a individualized presents. seriously, it was like christmas in a box! my eyes welled up with tears, and a huge smile had creeped over my face. after all this time, they still have not forgotten me. god, it means so much.

8.11-12.07 julie smith, david chamowitz & savannah (alexandria, virginia)

we exposed them to a little local culture- the 2nd annual corn festival in northumberland, where everyone stuffed their faces with roasted sweet corn, fish sandwiches, cotton candy and hot dogs. we outfitted our visitors with the standard bucknell attire, and even found a bandana for miss savannah to sport. dave couldn't get over the amish sightings, so dad was more than thrilled to take him on a "chasing down the amish" tour sunday morning. (no, we don't actually chase them down- mom/dad said it as a joke one day last summer, and the phrase kinda stuck.) i was so proud of myself for having Julie's present all wrapped up in advance of her 9.5 birthday, but i couldn't hold out and forced her to open it early! (she didn't protest.) even though i had warned julie about the screwed up liquor laws, they were still stuck buying an entire case of budweiser from a beer barn once they crossed the state line. this is actually working out in our favor, since it happens to at least 1 out of 4 visitors, so the fridge remains stocked until the next one arrives.

8.12.07 (evening) lindsay casteel, mclean, virginia

lindsay is tailing close behind holly, as this is her second stop on her return trips from bloomsburg to d.c. i took her through the contents of the care package, and she shared some work gossip. i'm not supposed to tell you this, but she ate apple pie and ice cream with me (her slice was the real homemade deal, mind was the scrumptious, whole foods bakery gluten-free one holly had included with the care package.) sorry for letting that slip linds! ;)

an emma woodhouse moment

as my love affair with jane austen continues, and "becoming jane" hits theatres all over the country, i decided to throw a literary flair into this evening's post. i find it to be quite applicable, and hopefully you will get the comparison after reading through my rambling thoughts.

here's the thing. as much as i don't want to face it, and upcoming birthday avoidance aside, i'm 98.66666% sure that I have become a grown-up. this most likely occurred when i was in one of the stages of denial, but regardless of that fact, i should be thinking more maturely, right? i should be living my days in line with the number one priority in my life- taking care of my health. it should go without saying that i should be disciplined, that my thoughts should focus around increasing my strength, conserving my energy, performing the MS yoga routines, being vigilant about taking my medications, yada yada yada.

but i have to confess something. my thoughts ... don't always focus on the responsible things i just mentioned. i mean, come on. they're hideously boring! would you be thrilled with such an agenda??? if i were to be perfectly candid with you, i'd say that some of my thoughts are incredibly materialistic and completely irrational. example? easy. my brother went out in the sweltering heat for a 45 minute run this morning, and i turned an unattractive shade of GREEN with envy. um, i HATE running. and i think sweating is abhorrent. but i'd like to have the OPTION of running. want to know something else? i really miss drinking wine, especially that delicious bubbly vinho verde we used to buy @ trader joe's for $3.99. how pathetic is that? i'm in the midst of a health CRISIS and i want to be guzzling booze and running a marathon.

while we're at it- how i miss shopping! put me in a target, macy's, the limited, banana republic, ann taylor loft, dsw, anthropologie- even those chaotic racks at forever21- and i'd be content for days. (especially when i'm with kate b/c she always insist we stop at auntie ann's for soft pretzels.) i miss the panicky thrill of checking my online account obsessively to make sure nothing is overdrawn before that piddly paycheck is deposited at 12:01am on the 2nd friday of every month. i miss those carb-a-licious bagel sandwiches at that place in clarendon, starbuck's chai skim lattes, chipotle burritos, bloomin' onions... ok, clearly i'm on a roll. i'll allow one more. i miss getting dressed up with the girls on a saturday night and ending up in a seedy beer bar dancing our asses off to a cheesy cover band. (ohhhhh, wait! i can't forget those super greasy slices of pizza at 2am in adams morgan.)

but now that i've put pen to paper (or finger to keypad) on my inner-most materialistic secrets, i guess i should try to put it all back in perspective. i've been trying to remake myself in my own image, and it's being proven that it was the wrong approach. i can't go running. 1/2 a cup of white wine makes me vomit. i am physically unable to walk around a shopping mall (and refuse to be carted around in a wheelchair at the age of 26, almost 27, by an unlucky pal who was guilted into it.) i the online account overdraw excitement is null and void bc i don't even have a paycheck. and to top it all off, i don't eat gluten so all of those deliciously greasy items i mentioned are banned.

ok, brain says, we'll find other things you can do instead! how the hell do i do that? it took me over 20 years to figure out who i was and how my "normal" fit into the lives of my work, my friends, my family. no one told me i'd have to start over. so today, i have no answers. all i know is that i solve these problems much better when i have a glass of red and a late night gab session with my neighbor candy. oh yeah, i don't live there anymore.