Jinx!

I’m back! I had my treatment in late July and have been hesitant to post anything for fear of jinxing the (so far) amazing results. I did post something on Facebook a few weeks back and sure enough, later that night I couldn’t walk. But let’s start at the beginning.

In June, I went with my siblings and sister-in-law up to Mt Shasta to scatter Mom and Dads ashes. It was poignant, and heart breaking and liberating all at the same time. As I’ve written here before, my expectation of the whole “circle of life” thing was completely shattered when I fell to my knees and wailed from a very deep place I didn’t even know existed within that I missed my Mom! Fortunately, my brother and sister were there and my sister kept me from completely melting apart.

While out of town I got a call from my neurologist informing me that my treatment was being moved out two weeks. Damn! I had myself totally psyched up for it, but as it turned out it was for the best. When I came home from my trip, my beloved, pain in the ass, long time companion Clark wasn’t feeling so great. Fast forward a week and I was saying goodbye to my old pal. I miss him tremendously, but he did me a solid by checking out when he did. That cat was in. And out. And in. And out. And in…you get the idea. During my infusion week it would have been a bit much I think.

So I’d lost my mother. I’d lost my cat. It was time to lose my immune system. I’m sure I’ve made it quite clear that my family ROCKS. No surprise then, that my sister came straight down to go through the procedure with me (and my nephew popped in from NY for a night to offer some support). She and I secured candy (to counteract the steroid taste), cell phone chargers, snacks (duh, it’s my family), blankets, and water bottles and headed downtown to the hospital.

Everything I’d read said to plan 6-8 hours per day for the five days of the infusion. Yikes ~ that’s a long day. Ha! The protocol at the hospital infusion center required 10 hours ~ each day. The nurses were fantastic and had been infusing Lemtrada for over a year, so they had it down. I partly attribute my comfortable response to this drug to their expertise in administering it and the tweaks they’ve figured out to make it as uneventful and successful as possible.

My sister stayed for a week, followed by my brother for a week, followed by my daughter for a week (not to mention cards, visits, shopping, food, flowers, phone calls and texts from many incredible friends).  My gang did laundry, chores, cleaned house, shopped, cooked…I basically had staff. It was fantastic.  I am so fortunate that I felt great, almost right out of the gate. My head felt clear for the first time in years (possibly due to not drinking wine for a change as one friend pointed out, but anyway…).

So on the Facebook posting night, my daughter Liza was here from Colorado, and her boyfriend was here too. We went over to Anna & Chris’s house for dinner and holy shit….my legs just stopped working.Completely. I wasn’t unduly alarmed; one is warned of all kinds of crazy stuff that can happen post infusion, but it wasn’t fun. Fortunately, with two paramedics on hand, I knew I was going to be safe. Liza had the wherewithal to put in a call to the on-call doctor who told her I needed electrolytes (it’s critical to stay hydrated, but all that water had had flushed everything out of my system apparently). I had a Gatorade, and within 20 minutes was back on my feet. Yay!

Since then, I’ve been feeling marvelous, albeit pretty low energy. The goal with Lemtrada is to stop progression, and any improvement beyond that is gravy. I visited my doctor last week and was told I’m right on track, which is super encouraging. I now continue to get labs done monthly for the next four years (monitoring against all kinds of dire and weird stuff) and then I’ll get an MRI in one year to see if progression as been halted, then do this all over again for a for three day second course of treatment.

I’m not allowed to expect anything beyond containment of this disease, although many people have regained various degrees of ability. Obviously I’m tempting fate by writing this blog post and possibly jinxing myself again, so I’m going to say this very quietly: last week I walked across a room, unaided, carrying a glass of water! ;-).

Ssshhhh…..

frog

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.

Cat Scratch Fever

Today I’m feeling just disconnected and at sea. Disability attorneys. Paperwork. CASDI. Doctor’s reports. Forms. SSDI. Health insurance. More forms. More paperwork. And really, what the hell do I know about hiring attorneys and filling out government forms? I probably shouldn’t say this out loud, but it is b-o-r-i-n-g, to say the least. And extremely overwhelming, too. Blech.

Overseeing this endless computer drudge are Cleo and Clark. Now Clark likes to sit on my lap and look fabulous while I’m trying to type. Cleo on other hand, is a scrappy, bitter hag of a cat. She does this spooky staring thing that just creeps me out. She meows really loudly and persistently. If you try to touch her however, she hisses, growls, spits, scratches and basically is just one old grumpy gal. Considering she’s pushing 17 or so (what’s that in cat years, like 300?) I imagine I’d feel pretty bitter too.

One day she was boring holes into the back of my head when I was making bread using a mixer. I became so frazzled that I lifted the paddle out of the mixer while it was still powered on and bread dough went flying all over the kitchen ~ floors, ceiling, counters, cabinets.  This made me more than a little nuts, so I threw her outside where she proceeded to ensconce herself  on the doorstep of the glass paned door and STARE at me some more. I closed the shade and considered a shot of scotch. This cat unnerves me!

Cleo adores Kate. Whenever she comes to visit that cat is the nicest, sweetest little kitty you’ve ever met. I keep trying to get Kate to take her back to California which she declines to do, because I think deep down, my friend knows she really is possessed by demons.