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…”!

 

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Lucy in the Sky

I was born in 1957, which put me pretty much smack dab into the middle of high school when it was cool to be a hippie. I didn’t let the grass grow under the platitude of “peace, love, sell some incense”. I ate it up. Long hair parted down the middle, abalone shell necklace on a leather thong, natural wool dyed hats, Joni Mitchell, hairy legs…bring it on.

I had just missed the drug induced 60s (“if you remember the 60s, you weren’t there”), but there was still plenty of pot and things around in my world. A “lid” of pot was about $10 and smelled mainly and suspiciously of lawn clippings. Never was my deal and still isn’t. (MS bonus = medical marijuana, but despite the slight, yet coveted, “bad girl” image it invokes, I just can’t go there.)

So along comes MS. Early symptoms around 26, final diagnosis at 43. My hippie persona was well behind me (six figure salary, BMW, Prada perfume, $100 haircuts, W Hotel).  I had luckily survived the music industry during the crazy 80s and 90s and my drug of choice was now a solid  $30 bottle of Pinot Noir.

Welcome Copaxone. Ew. Are you fucking kidding me? A DAILY injection? As I’ve chronicled here before, it’s an uncomfortable, lumpy, burny, creepy, bummer. And it’s like, wow, a MONDO drug. Not only that, but to be 100% honest here, I still really don’t have a clue what the heck it does or how it works after 12 years (that’s well over 4,000 shots). It also now costs over $4,000 per month (thank you health insurance and co-pay assistance!). Huh. I haven’t done the math before….holy cow!!! I had gone from sanctimoniously turning away from lawn clippings, to daily injections of drugs I imagine are more expensive than the finest grade of heroin.

But back to my hippie roots. I’ve discovered that since I’ve had to quit my high powered, super fun, big dollar, high pressure job and been forced to slow down and nap, hirple and read all day that I’m starting to pull out the Joni MItchell, quit dying my hair, and only occasionally dabbing on some left over Prada. I’m now reduced to $10  boxed wine – mainly because of financial issues, but also because it is much more eco friendly……

The proverbial drug cat got out of the bag though. My doctor has given me valium to take when the spasticity is bad or I’m feeling a little too anxious. I take a statin for high cholesterol as I can’t exercise enough to get it down naturally. I take a nightly dose of antibiotic to counteract UTIs caused by catheterizing. You get the idea.

I’ll continue to recycle. I’ll continue to conserve energy. I’ll continue to eat organic. But, I think a little chemical help is warranted and welcome thanks to this interloper – MS.

Illustration by Hizza Siller

 

Lumps and Grinds

I am generally a pretty sunny person, and don’t like to spend a bunch of time lamenting my lot in life. Overall my lot includes beautiful children, an amazing and loving family, fantastic friends and the gift of a sense of humor (thanks, Mom). But every now and again, something just pisses me off, so allow me this rant.

Eleven years ago, when I was first diagnosed with MS, there were 3 therapies available commonly referred to as the ABC drugs: Avonex, Betaseron and Copaxone. The choices between them were wonderful: weekly injections or every other day injections or daily injections. Golly – how to choose? The first two apparently can cause such bad flu-like symptoms that after injecting, you can be down for the count for days. You’re kidding me, right? I didn’t think that was my best choice. But a daily injection? Ugh.

Fortunately, (I use the term rather tongue in cheek here…) Liza was giving herself up to 6 million insulin injections per day for her diabetes, so I was chagrined at what a pussy I was being; and we were also rich in sharpies disposal containers.

During this time we also had a cat named Lila (sister of the demon Cleo) who got sick and the vet informed me the she would require daily injections. I didn’t think so. She got exactly ONE if you take my meaning….

Anyways….so I chose the daily injectable of Copaxone, as the side effects seemed minimal. My doctor at that time was a Dr. K who worked at USC. He had been one of the early champions of Copaxone (I believe he was one of the developers of it (certainly he spearheaded up clinical trials of it) so he of course agreed with my choice. (Dr. K was great ~ he once told me after seeing my MRI that yes, in fact, I had brain rot. We shared a similar sense of humor…).

When you begin a new therapy that costs over $4,000 per month, it comes with a nurse who makes a house call. She showed me how to wash my hands, open an alcohol swab and how to mix the alchemy that was my shot. When I started this therapy, I used to have to mix up my own potion. I had little vials of stuff that I’d measure out and swirl around until the concoction was ready, and then I’d draw up my own syringe. Egad. It was like high school chemistry all over again. Oddly enough, I flew overseas one time with this make shift lab in my carry on, and nary a word was spoken through security. Must have been pre-Sept 11.

The nurse showed up with support materials: a little stick figure picture detailing the 7 points of entry: left arm, right arm, left thigh, right thigh, left hip, right hip, belly; a little calendar to put on the refrigerator to remind me of which location on which day; and an 800 number for support.

All good, let’s go. I took the first shot in my right arm. H-O-L-Y F-U-C-K. Big giant alligator tears streamed down my face ~ it HURT. In trying to describe it later to my sister I called it Bruise Juice. There was no other way to describe it. You know how when you’ve bruised yourself and you inadvertently lean on the bruise you get a very distinct and unique wave of pain that spreads up to your ears? Imagine, if possible, that feeling being injected into your body. It was the worst.

The capacity of the human body to adapt is nothing short of amazing. In a relatively short period of time the bruise juice feeling subsided, I scrapped the support items and I was jabbing away like an old pro. My daily grind, day in and day out. And then, about 3,500 shots into it, a new phenomenon set in. Scar tissue. I guess it’s inevitable that you just can’t keep stabbing ourself over and over and expect the tissue to remain soft and supple, but it got so hard the needle could no longer penetrate. And I got dents. Dents in my arms, thighs, hips and belly.

Since no piece of cake is complete without a cherry on top, I added menopause into this olio of battered flesh. This change in hormones almost always includes a healthy helping of unanticipated and rapid weight gain, particularly in the middle. I am no exception. So here I am: a pair of skinny legs with dented thighs; a set of skinny arms (I don’t even have flapping underarms) also deeply dented; some good cratered curves on top and a nice comfy and lumpy belly. Pretty.

Now that you have that fabulous imagine seared into your mind, let me explain the reason for the rant. I stopped injecting in the legs and arms as they don’t have the…let’s call it the traction, that the hips and belly do. Now I’m down to 3 locations and they have taken the brunt of the over 4,000 shots I’ve given myself over the last 11 years. This hardly seems fair, so the other day I decided to give the leg a shot. It got all swollen and creepy and I had to run over to a friend who’s a doctor to look at it and then ice it for an hour. So, next up, I tried the arm. Son of a gun if that old Bruise Juice feeling didn’t come burning back through, AND I couldn’t lift my arm for 3 hours.

That is what pissed me off and prompted this rant. We all have to take our lumps in life and I know it as well as anyone, but sometimes it feels really good to just get mad and vent. I feel better now, so I’m going to go back to Googling the new oral meds that are coming out ~ I hope to heaven they are not Bruise Juice pills.