sweet setup

yesterday (tuesday) was the big day. i was headed to Geisinger medical center to be the first MS patient to receive Tysabri in the Knapper Clinic's infusion center. it was wonderful for the excursion to start out at 10am- much better than the 6:30 wake up call for Harrisburg over the past 4 months. of course it was raining horrifically, and there wasn't an available handicapped space in sight. luckily i had chauffeur Jean (aka mom) who was kind enough to drop me off at the main entrance while she parked Carlyle (my camry.)

Sharon is the nurse practitioner in Geisinger's neurology dept who specializes in MS. she's been the crusader for offering Tysabri at the clinic, and truly passionate about helping her patients. we walked into bad news, which is never a good start to a long day. i was not going to be able to receive Aloxi, an anti-nausea medication that lasts an entire week. since its re-release, there isn't a lot of data on Tysabri's side effects, and i have found that even doctors and nurses that are trained to disperse the drug are not educated on this aspect of the medication. (there seems to be a "wait and see" approach.) i get many of the minor side effects- itching, fatigue, joint pain- but the worst is the violent cramping and persistent nausea. after the first infusions in march and april, i demanded an anti nausea medication. i didn't care that "most people don't suffer from nausea." i was, and dammit they were going to help me get through it! hence my relationship with Aloxi, which has proven a life saver.

i still have my private insurance through Arnold- BCBS of Massachusetts- but it is cobra based, so we're handing over $550/month just to keep the benefit. (medicare won't pay for Tysabri, but don't get me started on that.) BCBS refused to pre-authorize the drug. they said i had to have cancer to fund the prescription (Aloxi is used primarily for chemo patients.) this was at 3:30 last friday (yeah, good luck getting in touch with anyone after noon on Friday, no matter where you work!) so on monday, surprisingly, medicare said they would pay for the drug, BUT here's the catch. Geisinger (the hospital) requires you to sign a waiver saying that you will pay for the drug out of pocket if the insurance doesn't go through. guess how much this out of pocket drug costs? $1750. um, no way in hell was i signing that slip of paper. luckily, i have Zofran tablets that i use for the persistent nausea my GI problems cause, so i was able to pre-medicate with that. (while it has taken the edge off, i am still suffering from painful cramping and persistent nausea that has left me curled up in bed with a pillow padded against my poor stomach.)

even with the news about Aloxi, i had managed to hold myself together emotionally. that flew out the window when sharon asked "so how have you been feeling lately?"- i promptly burst into tears. the past week had been difficult, both emotionally and physically. it is typical for my body to start falling apart as the next infusion approaches. all of my symptoms decide to come out and play, wreaking havoc on my daily lifestyle. but this time things were different. i have had some new symptoms, plus a resurgence of some i haven't had in over a year- intense, daily migraines. when i raise my arms, they go numb. i'm constantly dizzy, and peeing just as frequently. in addition to the MS symptoms, my GI problems are persisting, if not worsening, and i'm being ping ponged from my internist to neurologist to gastroenterologist and back again.

we talked at length about the situation, and her suspicion is that a new lesion could be forming in my neck, and that i'm most likely in the beginning of a flare. when she said this, i was oddly calm. when it comes to my body, i'm pretty intuitive- i think we all are. and it felt good to fess up to what was going on physically- i had been bottling it in, nervous and wary of what this could mean, what would happen to me. Sharon said "you know, Tysabri isn't for everyone." and she's right. i had looked at Tysabri as this golden drug, this miracle cure. and there are other options. even with all this drama, there was some good news at the pre infusion appt- to quote Sharon, my brain MRI looks "beautiful." no decrease in lesions, but no increase either. (unfortunately, the lesions alone don't provide an accurate picture of a person's severity of MS, it's just one of the diagnostic tests.)

after our lengthy meeting, she loaded me up with paperwork and sent me off to Knapper Clinic, on the other side of the medical campus. she advised us to be patient, and warned us that things may not go too smoothly when we first arrive. let me tell you- that place is quite the operation! not only did things go smooth as silk, but i almost forgot i had a needle sticking out of my arm and a machine beeping my blood pressure and pulse every 30 minutes. beep. beep. beep. (god i wanted to throw that machine out the window.) the nurses were super sweet, and they hooked me up with a corner room with a view. (i guess i'll settle for a hospital partition since the corner office isn't in the cards anymore!)

here's the best part- the chairs had a massage button option, AND various levels of heating. all at the click of a button! my mom got the guided tour (i was too wiped out, i basically passed out in the chair once we got settled) and came back with snacks. there were sandwiches, chips, drinks, hot chocolate, coffee- anything you can think of. oh- and your own personal TV (with headphones) that extends out from a huge arm attached to the wall, wireless internet, and even portable DVD players you can check out. out of nowhere came a nurse with a digital camera (damn those paparazzi- they never leave me alone!)- they wanted my picture so that they can learn who i am, and identify me in the future. i was so impressed!

so now i'm back at the ranch, where poor mom has 2 patients to deal with. dad had surgery last week to take care of the prostate cancer- he came home from Fox Chase Cancer Center in Philly on saturday evening. his recovery continues, but he's not very comfortable and is having some unpleasant side effects from the operation. i'm acting as a drug consultant and medical specialist, much to his appreciation ;) thank you to everyone who was praying for him (and us), and who have requested an update on the situation. we'll find out officially on tuesday if the docs got all the cancer, but the prognosis is positive.