Two Weeks Later…

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It’s amazing how much can change in two weeks. Wars have been fought and won in a shorter span of time and, if you are a believer, than the entire world was created by the Almighty in a mere 7 days— including, Adam, Eve, snakes, assorted shrubberies, and the Fuji apples you can buy at Savemart for $1.29 a pound.

And if all that wasn’t enough excitement, I also made the front page of the estimable Patterson Irrigator newspaper― instead of my column’s usual spot on page 5, or 7. So, yeah, a lot can change very fast.

Two weeks ago, I had my first injection of Spinraza. (For those of you that haven’t been following my journey, you can read my past writings on this topic HERE.) It wasn’t long after that initial treatment that I first began to feel that magical little $125,000 serum at my work in my spinal fluid— like busy Oompa Loompas toiling at Willy Wonka’s factory over a steaming vat of marshmallow cream.

The night following the injection, I woke up at 2am absolutely starving— like I hadn’t eaten anything for days. If you know me at all, you’d know this is an impossibility. There are few things in this life I love more than food. And if I could think of what those things actually are, I would write them right here.

I spent the next 3 days basically eating everything that wasn’t nailed down— especially things with protein. I was like a mama grizzly bear that hadn’t seen food since she went into hibernation last December. A real grizzly― not the fake ones that Sarah Palin seems to find everywhere she goes.

To give you an example, after already consuming breakfast, lunch and three snacks, one afternoon around 4pm I got hungry again and began casting my eyes around my kitchen. My radar settled upon a pouch of cashew nuts on the counter. For a few minutes, I attempted to open the reusable zippered fastener on the pouch. But, I quickly grew impatient and annoyed when my not-strong-enough fingers couldn’t open the lip. Undeterred, I grabbed my purple Crayola kid scissors (the only kind that I can use without hurting myself) and proceeded to desecrate the thick pouch until I had wormed a two-inch hole into the plastic. As the soothing scent of roasted cashews wafted up to my nose, I knew that victory was at-hand. THE CASHEWS WERE MINE!

This inexplicable hunger, this rabid feeding frenzy, culminated in a fluttering feeling in the muscles of my neck, my upper arms and my right hand. I began to notice that things were just a touch easier to do. My Sonicare toothbrush felt lighter. I was typing faster on my computer. I was able to grab my water bottle just a bit more smoothly. My voice sounded stronger. My respiratory numbers were up. I could text jokes about Mr. Trump to my friends even more swiftly than I had two weeks ago.

Things were happening.

It’s difficult to fathom that the little vial of muscle juice was already working. But, while a great deal of things are “all in my head,” I guarantee than this definitely wasn’t. Just because I could convince 11-year-old me that Santa was real, despite all the evidence to the contrary, this doesn’t mean that I’m imagining that the Spinraza was already helping. While my imagination is incredibly well-honed, it’s not that good.

This week, I head back to Stanford for Dose #2. I never thought I’d be this excited to get another shot into my spine. Never. Just as I thought I’d never live to every meteorologist IN THE WORLD go apeshit over an upcoming solar eclipse.

Seriously, though, this hype is way too much— just like the Twilight movies. Once the solar eclipse is actually done, everyone is going to forget all about it… just like they forgot how they once found Robert Pattinson brooding and charming.

Anyway, please wish me luck for Dose #2.

Who knows what the next two weeks will bring?

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The Magic Little Bottle

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I never imagined that one tiny glass vial could ever consume so much of my time, my thoughts… my efforts. My quest for this magic little bottle—this miracle drug— has been months in the making. But, on a recent July day— a resplendent blue-skied morning— it finally happened.

Spinraza is now real.

For those of you that haven’t been following my journey, you can read my past writings on this topic HERE. But, if you’re one of those people that used Cliff Notes or Spark Notes in school and are actually too lazy to go and read these posts, here’s a recap…

Right before Christmas, the FDA approved the very first treatment for my rare genetic condition— Spinal Muscular Atrophy (SMA). This progressive neuromuscular disease is the #1 genetic killer of children under two years of age— but there’s a small segment of us that manage to survive into adulthood. There is no cure. Due to a missing gene on my 5th chromosome, I am not able to produce a vital protein for muscle growth and maintenance. Instead, I must rely on alternate genes in my DNA to produce this protein. But, these alternate genes aren’t very reliable or productive— just like dial-up internet, a really stoned teenager, or the entire US Congress.

This revolutionary new medication tweaks my alternate genes, allowing them to produce more protein than before— like when Peter Parker was bit by that weird spider that changed his DNA and turned him into superhero. Don’t worry, though, I won’t be climbing walls or spewing webs from my wrists like Spider-Man. This is a treatment, not a cure. But, gaining just a little strength would make a big difference in my life.

In all honesty, I never thought I’d live to see the day when there was a real treatment for my disability. Just like I never thought I’d live to see an orange-tinted, reality television star become President of the United States.

So, yeah, I guess anything can happen.

Since the FDA approval in December, I’ve been laboring to get this treatment, having to surmount many obstacles. For example, there were tests of all varieties— physical and pulmonary exams, blood tests, genetic screenings, a polygraph test, and a breathalyzer.

Okay, I might have made those last two up.

I also had to contend with the insurance hurdles to get this very-expensive medication covered. At $125,000 per injection, Spinraza is an orphan drug— which means that it is so incredibly specialized that only the few of us with SMA can actually use it. Drugs like these are years in the making, so if only a small number of people can use them, each dose has to be very pricey to recuperate the costs.

Last month, the excellent team at Stanford Neuroscience called that I had been given the “green light” to begin treatment. It was one of the happiest days of my life. Just like the first time I drank a pumpkin spice latte and the day I first got an iPhone.

So, this week, we headed over to Palo Alto for my first lumbar spinal injection of Spinraza. The sky was blue with promise and there was anticipation crackling in the air. It took over an hour for two doctors to carefully maneuver the tiny needle into my spinal fluid— dodging the complexities of my scoliosis (the side effect of my SMA) as they went. But, with the help of live x-ray guidance, they did it.

When the nurse brought out the magic little bottle of Spinraza, I felt tears of joy, not pain, rush into my eyes. And when she finished injecting the vial into my spinal fluid, she said, “Elizabette— it’s in.

Even though I had gone through a lot to get to this moment, I knew in an instant that my journey was really just beginning.

So, stay tuned, folks.

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xoxo

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