Hakuna Lemtrada!

Multiple Sclerosis is for the birds. No big news, that. What is big news are the many treatments that good ol’ Western medicine has been cooking up in the past decades since I was first diagnosed.

I’ve tried several of them ~ Copaxone, Tecfidera, Gilenya ~ and with the exception of Copaxone, I haven’t been too impressed. So it is with skeptical delight that I’ve decided to give another one a try. It’s called Lemtrada. This one basically annihilates the immune system then let’s your body regenerate it without the “memory” of MS. Sweet!

Downsides? Minor. Risk of cancer, thyroid problems, thrush, vomiting, rashes, death. You know, just about anything awful. But what the hell, death is the outcome regardless for us all, and despite that it seems extreme and in another decade it will probably seem as obsolete as using leeches to clean wounds, I’m giving it a go.

I know, I’m being glib (also no big news). Quite honestly I’m terrified. How can I not be? I’ve always thought going under the knife for any kind of elective procedure was risky, vain, unnecessary and actually stupid. Instead, I’m opting to voluntarily obliterate my immune system. Genious!

As expected, my incredibly wonderful and supportive family are lining up to take turns caring for me. My sister is coming from Seattle for the week of infusions (6-8 hours per day for 5 days), my brother is coming down from Northern California to take his stint and cook for me and keep me amused, then Liza comes from Colorado for a week to keep me company and shore me up. And of course, Anna is here the whole time being my rock.

As fucking freaked out as I truly am, when Liza was leaving from her visit last week I told her next time I see her, I won’t have MS! I don’t think that’s exactly true, but it certainly is a fantastic motivator!

I’m nervous and excited and expecting quite the journey. If this can stop MS in it’s tracks (and quite possibly allow my body to regain some ability back), I’m a thrilled and happy camper. Count on my brother to coin the phrase “Hakuna Lemtrada” which I”m hoping proves true…”it means no worries for the rest of your days…”!






The protocol to start my new drug Gilenya is to go to a medical facility (in my case, an urgent care center in the Valley), pop the pill, and sit around for 6 hours while your heart rate and pulse are monitored to make sure you don’t keel over or die or anything.

Simple, no? First off my appointment is at 10 a.m. Being a prompt sort, my good friend Bella gets me there at 9:45. I fill out paperwork, we chat for a 1/2 hour, then she leaves me there. Then it’s 10:45, then it’s 11:00. Um, hello? My appointment is at 10, what’s up? The monitoring doctor isn’t here yet. Ok….

Now, even though I’m unemployed and honestly have nothing but time on my hands, I still feel that my time is as important as anyone else’s. So I’m starting to get a little grumbly under my breath. “I guess this doctor thinks his time is more valuable than mine….sure! just make me wait!….goddam doctors thing they’re so important…” Somehow I’m drifting into a self righteous ‘get off my lawn’ space and feeling more and more like I’m being singled out and wronged by ‘The Man’ and every other human on the planet. Very pretty and helpful in this situation.

Not surprisingly, I take this attitude right with me when I’m finally called into an exam room. A nice nurse takes my vitals, then says another nurse will be right in to give me an EKG. Just put this ridiculous piece of hard stiff fabric that covers nothing of your body on and sit here in the freezing air conditioner for a minute, he says.  10 more minutes go by and I start frothing at the mouth. I am getting pissed! I’ve thrown off the stupid paper shorty gown top, I’m half naked in a sweater and getting madder than a wet hen by the minute.

In comes the doctor and the first words out of my mouth are, “My appointment was at 10. I’m usually a very chill person (obviously) and I’m sorry to be such a bitch but I’m tired of sitting around waiting on you people..blah, blah, blah”. The doctor is unfazed. I’m assuming since this is an urgent care facility she’s used to dealing with people who are a) hungry and b) scared ~ which I finally realize are both true regarding me.

I calm down, get dressed, and pop the pill at 11:20. I’m escorted into a quasi storage room with a big chair in it and then monitored every 1/2 hour for blood pressure and pulse. I finish watching Behind the Candelabra; the movie Birdman (did it really win an Academy Award?); and 8 or so episodes of Seinfeld.

The plan is for Anna to pick me up on her way home from a relaxing weekend in Monterey. The timing was perfect! She got there right at 4:30, but since I’d started late, we had an hour to kill which we did visiting and eating potato chips. At 5:30 I get another EKG and the news from the doctor that she wants to ‘hold me over’ because all my pressures are low.

Drat. I’m kind to the doctor now and being all cooperative and trite because I’ve been such a bitch at the beginning and feeling guilty. She seems to be just going along with her day and harboring no resentment towards me and the time passes and finally at 7:30 I’m released.

On the way out, we stop at the desk to ask her some questions about this super heavy duty, heart beat lowering, ‘we’re not sure how it works’ medication. It goes like this:

Me: “Since I took my first dose today at 11:30, can I take it tomorrow at 10?” Dr. C: “Meh” with a shrug.

Me: “Should I stay home tomorrow and rest, or should I go into the store so Anna can keep an eye on me?” Dr C: “Yes”. Me: “Yes, I should stay home? Or yes I should go to the store?” Dr. C: “Yes”.

Anna: “If she starts to feel dizzy or strange, is that normal? Or should she go to urgent care?” Dr C: “Meh”, again with the shrug. Then she says, “You might feel faint, have chest pains or be dizzy.” Anna and me: “and…?” Dr C : “Meh”.

It was just bizarre. At this point, we can’t wait to leave so we just high tail it out of there and figure we’ll sort everything out as it comes along. Poor Anna, this is how she ends a holiday weekend? I take her out for some dinner, since all we’ve had since 4:30 is a small bag of potato chips, which we split. We go to one of our usual places and when I ask her how her dinner is? She just shrugs and said, “Meh.”


It Does What, Now..?

Just over a year ago I posted about how excited I was to be trying a new dry cleaning fluid based pill, hoping it’d be a panacea, etc., etc. Well now, 13 months later I can report ~ yeah, not so much.

An $18,995 MRI came back all clean and rosy ~ no new lesions and others even reduced in size ~ this is all good. What’s not good however, is my new inability to do things, like, oh….. WALK. That particular skill has gone directly and solidly downhill.

Consequently, I scheduled a pow-wow with my doctor….wait, I haven’t told you about my new doctor yet, have I? Oh my goodness! Dr B. She is amazing! Very, very, very smart. She looks like Emma Peel as a Russian spy. She’s very stylish and gorgeous and super well dressed. Under her white doctor coat she wears super chic black A-line dresses or slacks and pointy shoes. She has teased hair, black eyeliner, gold jewelry and a PhD. In a nut shell, she is bad ass.

Dr B. and I discussed my options and together (with patient advocate daughter Liza by my side (it was her turn, Anna went last time)), we opted for another newish drug called Gilenya.

This will be drug therapy #3. Two main things seem to be consistent with MS drugs. 1) they are massively expensive and, 2) scientists seem to have now idea how they work. Witness the fancy brochure I had sent overnight to me from Novartis, (the makers of Gilenya). Tucked in amongst the glossy pictures of people laughing and splashing paint all over the place (why? I have no idea), and warnings of side effects you don’t want to know about, is this gem of a phrase on page 10: “While it’s not exactly clear how Gilenya works….”

Whoa, wait a second. WTF? I’m going to take some pill that is unknown as to how it works? The short answer is hell yeah. If it can slow this thing down, then you betcha. Honestly I don’t care how it works, only that it does.

So I get an EKG to see if my heart is ok. I get blood drawn to see if my liver is ok. I see a nuero ophthalmologist (this guy is also gorgeous ~ if you get MS, go to USC Keck Medical Center) to assess if my eyes are ok (I told you you didn’t want to know about the side effects…).  I contact my insurance. I contact my co-pay assistance fund. I get green lighted all the way around and now I am good to go.

The next step is to go to an out patient center someplace in the Valley so that I can take my first pill and then be monitored for six hours to make sure my heart doesn’t stop beating or some damn thing. Chances are one in a zillion, but I guess they want to be sure.

I trust my new Avenger doctor and her recommendations. But let us please, collectively keep our fingers crossed that this works.The next options are even crazier ~ but you can bet I’ll try them if this one doesn’t pan out!emmapeel