Thursday, October 24, 2013

At What Price Health? (Repost)

Well, I'm still in recovery mode from my last failed attempt at trying a new MS med. For all of those who have inquired, no, the medication was not Tecfidera, so if you have recently started the drug, no cause for alarm. The med I tried is not used all that often to treat MS, and I had a very atypical reaction to it (naturally). I'll provide full details in my next post, which I will put up as soon as I'm feeling better. Just a teaser to keep you interested: the drug costs $150,000 for a three-week supply, and I was only able to use about one week's worth. So, I have about $100,000 sitting in my refrigerator, just taking up space and doing nothing to help anybody. Way to go, Medical Industrial Complex!

In the meantime, I'm reposting the following piece, which first appeared on Wheelchair Kamikaze way back in 2009. It generated lots of comments back then, and I hope current WK readers find it just as interesting. Please stay tuned for a new post, coming just as soon as I'm feeling up to it…

For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilĂ , 24 hours later they are completely symptom-free, their nervous systems restored to pristine condition and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.

Great, right? Sign me up!

Only, there's a catch. This "cure" comes with a terrible cost: after a certain amount of time, every patient treated with this injection dies painlessly in their sleep. In the "X" amount of time before they die, the patient remains in the full bloom of health, right up until the night they go to bed for the final time. The question, then, is what would be the minimum duration of guaranteed health that would entice you to take the shot? In other words, would being restored to perfect health be worth it to you if you knew with utter certainty that you would die in six months? One year? Five years? 10 years?

Would you be willing to trade a full life of chronic illness for a blissful time during which you would be completely unshackled by the chains of Multiple Sclerosis? For a time free of fatigue and cognitive dysfunction, of muscle spasms, spasticity and paralysis , of bladder and bowel issues, of the constant daily struggle of dealing with the rigors of this miserable disease? An interval during which you'd have no reason to even think about braces and canes and walkers and wheelchairs and MRIs and neurologists and lesions and a medicine chest full of pills that hardly even seem to matter? When you could walk and run and dance (dance!), drive and play and travel, and finally, finally, once again be that fully functional man or woman that you used to be, that you've dreamed of being since the day MS started taking its dreadful toll?

How many months or years of restored health would be enough to entice you to undergo a simple but profoundly effective treatment that carried with it the ultimate price? Of course, the answer must differ for each of us, based on our own current state of disability, our rate of progression, the level of our misery, and the amount of hope we have that a cure, or even a truly effective treatment, can be found in time to help us. The flavor of the disease a patient suffers from also enters into the calculus . Folks with relapsing remitting disease that is currently being managed effectively by disease modifying drugs might reject such a proposition out right, while patients with progressive disease, especially advanced progressive disease, would probably be much more open to trading longevity for a period of perfect health.

Certainly, marital status and family situations factor greatly into the equation. Single people, or those without children, might be more willing to sacrifice longevity for a chance, though brief, to be healthy once again. For those who are married, and especially those with children, the calculus gets infinitely more complicated. How much time with a healthy parent would it be worth for a child to then lose that parent? Difficult questions all, and ones I think reach to the very core of our beings.

Personally, after much thought, I think I'd put my "X" at somewhere around a year or a year and a half. If a physician approached me with a syringe, and told me that the injection would guarantee me 12 months of perfect health, but at the end of that 12 months, I would die painlessly in my sleep, I would give the offer serious consideration. Of course, I'd want more time, all the time in the universe, but this thought exercise requires that we consider the absolute minimum amount of time we would settle for.

One year would give me time enough to experience all of those pleasures in life that I now miss so terribly, to travel to the places my wife and I have always wanted to see together, and to spend time with those who I hold closest to my heart. I don't have children, so that's not a consideration. I do have hope that stem cells offer real promise as a treatment, but I'm unsure that this promise will be fulfilled in time to help me. I have my doubts about many of the avenues currently being explored by MS researchers, and though strides are being made, I'm uncertain that the mysteries of MS will be fully unraveled anytime soon, and given my rate of progression, soon is the only timeframe that really matters to me. In addition, there is now question as to whether what I have is even really MS, and what chance is there that some mystery illness will be solved before it puts me into a state I deem to be simply unbearable?

So what about you, dear reader? What's the minimum amount of time for which you'd be willing to trade your life for perfect health? What's your "X"?

Tuesday, October 8, 2013

Remembering Stella (Repost)

(Some good news and some bad news. First, the bad news. After trying a new drug (for me) to calm my mysterious  beast, I am instead caught in the throes of a struggle with it. Weaning off the drug now, so hopefully I'll be back to my "old normal" sooner rather than later. The good news is that all this should make for a pretty interesting blog post, including some outrageous pharmaceutical company shenanigans, the mysteries of my illness, and general adventures in medicine.. In the meantime, for your hopeful enjoyment, I'm reposting the below essay, written in January, 2010 about one of the best friends I've ever had. Thanks for reading, and a new essay will hopefully be up soon…)

My best buddy Stella passed away just a little over three years ago. She was a faithful friend with a huge heart who always knew just how to make me smile and often had me laughing riotously out loud. Stella was compassionate and sweet, and knew exactly how to live in the moment and seize every day. She was faithful, devoted and I knew that I could trust her entirely with my deepest darkest secrets. About the worst thing I can say about her is that she had the unshakable habit of loudly and vigorously chewing her paws in the middle of the night, while emitting strange noises that were impossible to sleep through.

stella%20action%20cu[1]Stella was, of course, my furry best friend, a yellow Labrador Retriever who came into my life in 1998, while I was still living in Fort Lauderdale. A coworker had just given birth to a baby girl and no longer had the time to care for Stella. I'd recently moved into a charming little 1940s Florida cottage with my then girlfriend, and was jonesing for a dog. So, the timing was perfect, and after two "meet and greets", during which Stella gave me the thumbs up, I was a happy new doggy daddy. Stella had just turned three years old when she came to me, and I was five years away from developing MS.

I hadn't had my own dog since I was a kid, but I had bonded with the canine companions of several friends and lovers that I'd met along the journey of my adult life. I was particularly close with a Dalmatian named Briar, whose owner unfortunately turned out to be a pathologically lying serial cheater who delighted in using my heart like a roll of Charmin. Quick life lesson: if you find out that your lover has cheated on every person they've ever been with, don't fool yourself into thinking you can somehow change them. Simply open your eyes to the truth, realize that once a person accepts such behaviors in themselves they will never change, and get as far away as possible, even if they have an adorable spotted four-legged creature with the most haunting eyes you've ever seen...

But, I digress. Stella and I quickly bonded, even as my girlfriend and I quickly unbonded. Turned out my Labrador friend enjoyed spending Sundays sprawled on the couch watching NFL games as much as I did, as long she could watch them while laying between my legs with her head nestled on my belly. We took long walks around the neighborhood together, although she wasn't much for jogging. The one time I took her out for a run, she made it about a block before squatting in the middle of the road and doing what dogs generally do when they squat. After completing that most natural of acts, Stella let me know that jogging just wasn't her thing. No harm, really, because jogging wasn't really my thing, either.

About six months after Stella joined me, the girlfriend and I decided to call it quits, and I decided to get the hell out of Florida, a place I never much cared for, even though I spent 10 years there. I think the tropical sun beating on your noggin causes some kind of dementia, because even though I felt like a stranger in a strange land the entire time I lived down there, for some reason I could never formulate actionable plans to leave. It was like, "gee, this place royally sucks, ooh, I think I'll go for a swim..."

Anyway, Stella and I were soon back in my hometown of New York City, living in a section of the city known affectionately as "Hells Kitchen". For a dog that was born and raised in Florida, Stella took to city life like a socialite. For some reason, she naturally curbed herself (if only the same could be said for socialites), and she loved the wonderful sniffing opportunities that the city streets offered up in droves. She also loved the take-out Chinese joint around the corner from our apartment, which always had partially eaten chicken wings discarded on the sidewalk in front of it. One of the few arguments Stella and I ever had were over her insistence on insanely gobbling down as many of those gnawed on chicken bones as quickly as she possibly could, but a few rounds of very stern "bad girls" helped her kick the habit. You see, she really was a "good girl", and my disapproval trumped the irresistible gristly remains of chicken wings, true testament of her feelings for me.

For about a year, Stella and I were strictly a duo, spending lots of time at neighborhood dog runs and in Central Park, where she'd occasionally take an ecstatic jump in the lake. She absolutely lost her mind during that winter's first snowfall, which was the first snow the native Floridian had ever seen. If pure joy could be embodied in flesh and blood, it would be Stella burying herself in mounds of freshly fallen snow and then wriggling on her back to make canine snow angels. Her glee was infectious, and soon I too was a snow-covered whirling dervish, joining Stella in her carefree frolicking, covered head to toe in the powdery white stuff blanketing the fields of Central Park.

After about a year back in the city, late one night in a neighborhood bar I met a girl named Karen, who, despite my best efforts, didn't seem very interested until I mentioned the fact that I had to get home to walk my Labrador Retriever. Turned out that Karen had grown up with Labradors, and, figuring that a single guy with a Labrador couldn't be all that bad, she gave me her number. Just about two years later, we were married. At first, Stella didn't exactly welcome Karen with open paws; after all, Karen had supplanted her place on the couch. But the two soon became buddies, and Karen even succeeded in getting Stella to lose a little weight (for a while, we referred to her as "Jabba the Pup"), much to the veterinarians delight.

For a year, everything was hunky dory, until one very cold day in March 2003, when I took Stella for a very long walk along the Hudson River. About 2 miles into our trek, I noticed that I'd started limping. I didn't think much of it, but in the following weeks, the limp in my right leg grew worse, and I felt my right arm starting to weaken. Several doctors visits and an MRI later, and I found myself sitting in a doctor's office listening to words like "multiple sclerosis" and "progression" and "spinal tap" somehow become associated with the words "me" and "holy shit".

Strangely enough, just about the same time, Stella also started having all kinds of health problems. I honestly believe that she was so empathic that she somehow shared my distress and manifested physical illnesses of her own. Between 2003 and 2006, Stella developed mast cell cancer and autoimmune hepatitis. She had multiple surgeries to get rid of the cancer, and was put on a variety of medications and a special diet to address the hepatitis. For a while, we were actually both on the same immunosuppressants, bought from the same pharmacist. On several occasions, it appeared that Stella was on death's door, but she always managed to somehow pull through, often to the veterinarian's surprise. He'd smile, shrug his shoulders, and offer the only explanation he could, "She's Stella..."

Through it all, Stella stayed Stella. Though she would suffer a while from her painful surgeries, and the hepatitis would sometimes rob her of strength and appetite, as soon as she felt a little bit better, her tail was wagging, her eyes were bright, and she was ready to embrace whatever joy that the day had to offer. In so many ways, she taught me how to deal with my own illness, which progressed continuously through the ensuing years.

Stella didn't waste any time bemoaning her fate, or thinking about what might have been, because she was blessed to simply not have the capacity to do so. As my condition has continued to worsen, I've often thought of Stella, and have realized just how right she had it. Feeling sorry for yourself or worrying about future calamity only serve to poison the present, and the present, the now, and our place in it, is the only thing in the entire universe that we have any real control over. Endeavor to live your life like a Labrador, attack each day like it's a great big rawhide bone sent from the heavens.

Eventually, Stella's illnesses and advancing years got the upper hand; the cancer returned, and my sweet little girl started slipping away. Over the Thanksgiving weekend of 2006 we boarded her at the veterinarians while we visited my mom in Florida, and when we returned the vet told us that Stella's condition had worsened, and he recommended we put her down. He brought her out to us with an IV already inserted into her leg, but upon seeing us I could see that familiar spark in her eye, and she started eating the treats I tried to hand feed her. We decided to bring Stella home, to give her the chance to make one more rally.

By this time I was no longer able to walk Stella, and most of her caregiving fell to Karen. Stella actually did rebound a bit for the first few weeks, but I guess the power of love can only go so far. A few days after Christmas, we brought Stella back to the vet one last time, held her, and said goodbye. Those weeks between Thanksgiving and Christmas became one extra month of bonus life for Stella, during which Karen took Stella to Central Park almost every day, and Stella ate all of the chicken and turkey she wanted.

Stella saw me through many transitions; from Fort Lauderdale to New York, from single to married, from well to Multiple Sclerosis. Aside from my wife, there is no being I have ever felt closer to, or more intimate with. I miss her still, and will for the rest of my days. Karen and I now live in a building that is wheelchair friendly, but doesn't allow dogs. If I somehow beat this thing, first thing we're doing is moving out of this place and getting ourselves a great big pooch, who will take Stella’s space, but surely not her place.

Here's my favorite photo of my pal Stella...

stella door effect

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