For those of you anxiously awaiting the Dr. She Who Will Not Be Named report, I have GREAT news to share…but first, I must walk you through a play-by-play build up of my appointment. Oh, the drama! LOL
I DID make it to my neurology appointment today on time…Dr. SWWNBN was NOT, however, on time…she was busily “helping people”. If I thought she had been just sitting in her office filing her nails, I might have felt a bit slighted…but, as is typical, she was flying from exam room to exam room like a gnat in a wind tunnel. LOL
After reading EVERY magazine in the waiting area (there are mags on “Volleyball”, “Skiing”, “Sports Illustrated”, “Running”…I always wonder WHO sees a neurologist and can do these things?!?), I was eventually taken back to an exam room by Dr. SWWNBN’s faithful assistant (and backbone of the medical office operations). My blood pressure was fabulous and I even had a pulse…who knew?!?
Dr. SWWNBN waltzed into the office in a more-than-I-would-like-to-see sincere manner. She started out the appointment with, “There’s something I need to tell you.”
Geez! I hate it when people start conversations with that kind of a line! I immediately imagine thoughts like my somatic brain tumor was really FOUND on my last MRI or I only have 6 months to live…neither happened to be the case, however.
Dr. SWWNBN proceeded to inform me the case of my Tysabri infusion reaction was not closed. Huh? “What is THIS news?” I quietly thought to myself.
It seems that, although the TOUCH/Biogen peeps told her I was to be cut off from the trough of Tysabri and never to receive the grand elixir again, this was not actually the “practical” case. She had consulted with another leading neurologist (and my prior neuro…the cute and intelligent one…LOL) who has been pumping Tysabri into the veins of MS patients like candy, and THIS neurologist informed her she only needed to TREAT my “anaphylactoid reaction”, but it did not preclude me from receiving the drug. Huh??? (My “huhs” are my intelligent utterings…)
“What’s this, you say?” I asked in astonishment. “Do you mean I COULD be eligible to receive Tysabri again in the future?” Thoughts of returning to the “cool” MS team of Tysabri infusers swam in my head.
“Yes,” Dr. SWWNBN said without a stutter and only a bit of confusion on her face in response to my overwhelmingly bright face beaming at her…she is not used to seeing me in my “happy” place in her office. LOL
Well slap my arse and call me Sally! There is a God and I am being watched over with loving eyes…OK, maybe that’s stretching it a bit…LOL…but I am absolutely DE- LIGHT- ED over this news! I then continued my plot against MS and quickly formulated a plan to try Tysabri again in a year or so (because I don’t want to use up all of my life time doses of Novantrone, thank you very much).
We discussed how remarkably well I was feeling/doing on the Novantrone, I “passed” my neuro exam with flying colors (by attempting to throw Dr. SWWNBN into the wall to demonstrate my new found “strong like bull” strength), we exchanged brief banter, and I left her office with an ounce of hope again in my heart (in the part that has yet to become hardened and cynical…LOL). There WILL be life after Novantrone after all…
Many of you may recall my hesitation to begin the Novantrone…it DOES, after all, carry a life time limit on the total amount one can receive. And it IS a strong chemotherapy agent, leaving one prone to fatigue, gastric upset, and an assortment of other side effects. But I decided to give the Novantrone a try after my “failed” Tysabri experience…it was somewhat of a “last hope” for me at the time (which has proven to be a remarkable drug accountable for my grand remission). And many of you will remember, I actually DID feel somewhat better during the months of my Tysabri infusions, leading me to believe THAT drug was also helpful at the time.
I’m not quite certain Dr. SWWNBN expected my gleeful response to this news…I’m never quite certain she is prepared for ANY of my reactions/responses. LOL But this really IS wonderful news to me and no one (not even Dr. SWWNBN) can steal my joy in the moment…lest I have to shove her/them into a wall again…LOL
Hooray for you and another try on Tysabry. I will stay tuned for the next installment.
ReplyDeleteDeb
"hardened and cynical"
ReplyDeleteJoin me luke and we will rule the universe as curmudgeonly grumps together! ....
Wait ... wrong timeline. My bad.
See? You aren't going to have any problems finding things to write about on your blog--we have your tysabry adventures still ahead!
ReplyDeleteWell, I won't even pretend to understand a third of what you just posted. But I'm getting a positive vibe from it, so... Yay?
ReplyDeleteHope everything works out, and that whatever complications or side effects you suffered from before are taken care of this time around.
Hooray! Congrats on the good news. Keep us posted!
ReplyDelete~Zee
Oh that is such wonderful news!
ReplyDeleteI'm Sooo happy for you!
Woooohoooo. many, many, many ((((hugs of encouragement)))) from me to you...,
All my best, Lauren :)
DEB:
ReplyDeleteThank you for your well-wishes...I'm sure I'll keep everyone posted. Whether they want to hear it or not. LOL
LD
MDMHVONPA:
ReplyDeleteI think I already DID join you, Luke...many years ago. LOL
LD
HARKOO/JOYCE:
ReplyDeleteYes, the problem is usually getting me to SHUT UP versus having a lack of something to say!
LD
STEVE:
ReplyDeleteIt's actually best if you DON'T understand...it really leads to less confusion! LOL
LD
ZEE:
ReplyDeleteI hope you also get some good news soon...rooting for you up here in Seattle!
LD
LAUREN:
ReplyDeleteThanks for your well-wishes also...good news does come in strange ways...
LD