Thursday, October 25, 2007

Living with a Thief

This post was inspired by a storyline on the last episode of the show House, which seems to be a muse for my blog entries. In the episode, titled "97 Seconds", one of House's patients is a man with a degenerative disease that has already made him reliant on a power wheelchair, a service dog, and aides to assist him with his personal hygiene and the other necessities of everyday life. The disease is now destroying his ability to swallow. As this procedure to implant a feeding tube takes place, the man gives voice to his grief over the things of which his disease has robbed him: his ability to walk, his modesty, and now, he explains, one of his few remaining pleasures, his ability to eat.

I have lived with such thieves for more than three decades now. Over the years, I have been robbed blind, then recovered some of that which was taken, and then lost it again, sometimes to the same thief, sometimes to a different villain. The name of the current robber is tethered cervical spinal cord syndrome. (I’ve included some medical background info about how this affects me at the end of the entry for anyone who’s interested.)

Like the flesh and blood criminals of the real world, I never know when my nemesis will strike, or what/how much will be taken from me against my will. Sometimes I get lucky, and I go for long periods of time in which the neighborhood watch (god? fate?) keeps the thief at bay. Other times I barely recover from one hit before something else is stolen away from me. Far too often the crimes occur while I sleep, so long ago I developed the habit of taking inventory of what I have left every morning when I wake up.

I’ve been the target of petty thefts and grand larcenies. I’ve often thought that I’d be far better off by having everything taken from me at once so I could grieve for all that was lost, stabilize, and move on, instead of being locked into this perpetual cycle of loss, mourning, and acceptance. But regardless of what’s taken from my body, the effect on my mind is always the same. I feel violated. I get angry. The certainty that I just can’t take this anymore eventually fades into resigned acceptance that I can take it, and I will take it, for the alternatives are unthinkable.

Worse, these degenerative diseases do not limit their pilfering to your body and abilities. They literally add insult to injury by stealing away your hope, your dignity, your modesty, your independence. They rob you of how other people see you, changing you instantly into a “patient” or a “disabled person” at the expense of every other identity you possess (e.g. outspoken activist, happily married woman, world traveler, cat rescuer). And at their worst, they can take from you your self-esteem, falsely leaving you to feel like a defeated victim instead of a determined survivor.

Although the things that are stolen from me have sometimes come back -- some only temporarily, others for much longer -- the question of, “is there any real justice to be had” remains open. My personal belief is that the reasons I am a party to these robberies are just, but in ways that are not necessarily evident or even able to be known. With the benefit of hindsight, I can state with certainty that for everything that has been taken from me, I have gained at least as much as I lost -- in experience, in love, in opportunity. And although it’s not an option today, I want to believe that a day will come -- probably after my life has ended -- in which the perpetrators of these crimes will be caught, corrected, or eliminated. This is the one group of criminals I will be glad to see executed without delay.

About My Latest Thief:
Like most of the medical maladies that find their way into my life, tethered cervical cord syndrome not at all a common condition. It is extremely rare, and as such there is very little information out there about it, let alone surgeons with experience at de-tethering at the brain stem level. (Most tethering of the spinal cord occurs near the tailbone and is typically congenital.) The easiest way to explain the condition is to picture an egg. In this syndrome, the egg yolk (the cervical spinal cord/brain stem) is no longer cushioned on all sides by the egg white (cerebral spinal fluid. Instead, parts of the yolk have adhered directly to the egg shell (which in the human body is the dura, the protective casing that surrounds the spinal cord). This attachment is a bad thing in even normal bodies, because it forces parts of the spinal cord to stretch every time certain movements are made, resulting in nerve damage. In my body, it’s totally FUBAR. After the surgeries and radiation treatments for the astrocytoma, I’ve only got about 10 percent of my cervical spinal cord left (that’s physically, not functionally -- the rest gone). Because the little bit of cord that’s left is sitting inside of a spine that twists and turns (about 90 degrees front to back and over 30 degrees from side to side), it’s already stretched taut and is now resting right next to the backs of the vertebrae, a dangerous development in and of itself. And now, bits of that carved down, stretched to the max cord have latched on to the dura, a tried and true recipe for even more damage. Add to all this the fact that a certain number of nerve cells of the brain and spinal cord are sure to die off I age, and I seem screwed (at least on paper).

The doctors I’ve seen believe this condition will result in quadriplegia, and there’s a good chance that I will need to rely on a ventilator to breathe. For now, though, I’m nowhere near that. I still have almost full use of my left arm and hand, decent use of my right arm, and I have some movement and strength in my legs, even if they can’t do anything useful. And the only breathing problems I have right now are caused by the two types of lung disease I picked up battling side effects of the nerve damage, not by the nerve damage itself.

Friday, October 19, 2007

It Was 30 Years Ago Today

Thirty years ago today doctors finally figured out what had been making me sick for the previous two and a half years: I had cancer of the spinal cord.

Two days before, my doctors performed a myelogram that revealed there was something amiss in my cervical spinal cord. At the time, they thought it was just a cyst. Turns out they were half right -- there were two blood filled cysts, one at the top and one at the bottom, attached to a cancerous tumor that had infiltrated my spinal cord so effectively that they were only able to remove about 80 percent of it after 15 hours of surgery.

The tumor was an anaplastic astrocytoma, also known as a grade III astrocytoma. It’s the most common brain tumor found in children but is found much less frequently in the spinal cord. The tumor was so intertwined with the nerves of the spinal cord that one was often indistinguishable from the other. According to my surgeons, their rule of thumb was to tug on a small piece, and if I kept breathing, to cut it out.

The cysts that they found were caused when the tumor bled at two different times. The first cyst, the one located at the top end of the tumor (right around the C4 vertebrae) is most likely was caused the stiff neck that I developed in April 1975, the first evidence that something was going wrong. The other cyst was attached to the bottom of the tumor, near the T4 vertebrae. The additional pressure it put on my spinal cord in was caused me to lose the use of my hands during the spring and summer of 1977.

At the time, there weren’t any chemotherapy drugs that were effective on the central nervous system, so excision and radiation therapy was the extent of the treatment available. There was less than a five percent chance of surviving for more than five years. Today, those odds aren’t much better, even with the development of new chemotherapy drugs. My parents were told I most likely would not live to finish high school.

The talents of the two surgeons who took me on were extraordinary. Although they ended up cutting out a great deal of tumor/nerve tissue, I was only in intensive care less than a day, and I walked out of the hospital five days after the operation. When I was released from the hospital, I took with me what would be the first of many tattoos, a series of blue dots tattooed on my upper back. These small tattoos outlined the area that would be subjected to 6000 rads during radiation therapy that I would get every day, Monday through Friday, for the next six weeks. The radiation treatments gave me an extremely raw throat, severe laryngitis, and left me with a nasty sunburn on the front of my neck during the treatment and for a time after -- it seems I was always chewing on a piece of Aspergum to try and ease the pain in my throat and rubbing creams on the skin to relieve the pain from the damaged skin. But I never lost any hair and I never suffered from nausea.

Although I had a pretty great freshman year after recovering from the operation -- I even spent the following summer in Germany as an exchange student -- the surgery and radiation weren’t enough to stop the progress of the tumor. I had a second surgery to attempt to remove the rumor on October 16, 1978, 362 days after I first was diagnosed with cancer. This second surgery was not the relative walk in the park that the first one was. The tumor had grown upward in the last year, and was now infiltrating the medulla oblongata, part of the brain stem. My surgeons were extremely aggressive in trying to remove it for good. Even though their actions caused me untold agony and suffering at the time (right after the surgery, I was totally paralyzed for 11 days, lost all feeling in and use of my right arm, and suffered from hypersensitivity in my left arm and right leg that were so severe that a puff of air or a tear landing on the skin felt like having a butcher knife plunged into me), their skills were among the best anyone could have asked for and bought me nine years of remission.

I had one more operation to treat the astrocytoma. On October 21, 1978 -- just over nine years since my previous surgery and ten years and two days since the tumor was first confirmed, not to mention five years past the time when I was expected to die -- I underwent another 12 hour surgery on my cervical spinal cord and brain stem. Thanks to the skills of yet another amazing surgeon and the use of hypnotherapy, I walked out of the hospital ten days later.

As you might guess, October is a tough month for me. Making it even harder is that my mother’s birthday is October 20, and it kills me that we had to spend so many of them either with me in the hospital having incredibly risky surgery or reliving the memory of her previous birthdays spent at the side of my hospital bed. She is the reason I lived through all of those operations, and I miss her so very much.

That insidious tumor that was discovered 30 years ago today changed my life in more ways than I can explain. There’s things it put me through that I’d gladly have done without -- the summer of 1984, spent in the hospital having surgeries to fuse my spine and stop a spinal fluid leak that cost me my left trapezius muscle and almost cost me my life when I developed bacterial meningitis twice. But there’s many good things that never would have happened had I not found myself battling cancer, including finding my niche in the developing field of online political activism at the dawn of the World Wide Web, and moving to Washington DC, where I met and married the love of my life.

All in all, it’s been a hell of a ride for the last 30 years. I’ve spent a great deal of it wondering why I not only beat the odds but blew away everyone’s expectations about what I would be able to do given the severe damage to my spinal cord. I don’t have any answers better than one a dear friend helped me find years ago during one of those late night at college, drinking with friends and discussing the meaning of existence discussions. When I asked him why he thought I lived when so many in the same situation had died, and he said, “To talk to people, to tell your story.” SO that’s what I do.

Thank you for listening. I hope to be able to retell the stories of my life for many years to come.

Thursday, October 18, 2007

We UnInterrupt This Blog

After months away, I’m finally back!

Although there aren’t more than a handful of people plus my best friend Jonderson who even realized I’ve been out of touch, I will offer both a brief explanation about my absence from the blogoshpere and a quick summary of life during that time to whet the appetite of the few folks who may have developed a taste for such things.

The why part of being away is easily summed up in three words: technology crapped out. The day after my most recent entry, two of the three working computers in our house went belly up. First to go was the laptop I had claimed as my own, on which are/were stored all of my blog entries. Later that day, my hubby’s ‘puter, the most technologically advanced machine in the house, gave up its ghost, only coming to life long enough for him to rescue some data that wasn’t yet backed up.

The deaths of the primary computers meant that the last machine standing was one ultra slow, antiquated 486, a monstrosity known locally as the Frankenputer. As the name indicates because it’s a sad imitation of a real computer that we bolted together from bits and pieces of real computers -- and a few parts that were cultivated from a jar labeled Abby Normal. (Big nod to all the other Mel Brooks fans out there.) Not only does this thing lack a decent processor, it’s also severely deficient in RAM -- the combination of the two make it ungodly slow when performing any one task. And heaven help you if you ask it to do two or more things at the same time.

This left two geeks, each used to spending at least six hours each day on their own personal computers, to share the slower than molasses Frankenputer. The result was that I pretty much gave up any use of the computer until recently, when I was fortunate enough to acquire a new laptop. Hubby, sadly, is still struggling through with the Frankenputer while he decides what upgrades he wants to do along with returning his PC to the land of the functioning.

The time away wasn’t overly eventful, but we did have a few things happen that are worth sharing. I discovered that the local health club has a hydraulic lift to help folks like me who can’t use steps get in and out of their pool. It is awesome! I’ve been a water lover since I could toddle, and it’s been hell living in the middle of the gorgeous, warm Caribbean Sea without being able to get into it without a lot of advance effort and the help of several friends or strangers. I was able to take advantage of the pool for a few weeks -- long enough to get me in shape enough to swim a kilometer in under a one hour session. (Not bad for someone with only 50 percent lung function using only her arms, is it?) Unfortunately, I had to give that up temporarily until I can settle a legal dispute with the facility’s manager over her insistence that my personal aide pay for a full price membership just so he can come inside the facility to help me get in and out of the pool. Updates on this legal battle will be posted as they occur.

Turning to other things…healthwise, things have been a mixed bag. I’ve been having pretty decent pain control, but have something weird happening with mystery infections and blister breakouts on the tip of my right ring finger that’s keeping me watchful. This is the same finger that developed a mysterious hole that took 27 months to heal back at the turn of the century, so poor, unexplained behavior is nothing new. The hubby is doing okay except for his ongoing battle with muscle spasms in his mid back. We hoped that he was on his way to answers when we finally got a referral to a local orthopedic doc, but a poorly timed island-wide power failure occurred five minutes before his appointment. He’s still trying to reschedule.

The family is doing well. My mother-in-law, who I love to pieces, will be here to visit us next week, her firs visit since we transformed our house from a broken-down, badly neglected hovel of a former duplex into a nice place to live. Can’t wait for her to be here when she can really relax and enjoy her time with us. She’ll also get to meet the five newest members of our indoor kitty clan and their outdoor parents. And speaking of the kitties, Ono, Omai and Kindle are fully integrated into the herd. Omai and Kindle have turned into little love sluts who crave petting and human attention. Ono remains skittish, shying away from physical contact but hanging out with her people. She’s even started to jump up on the bed, a sure sign she’s wanting to take her relationship with us further. The rest of the kids are all doing well, except for some itchiness and fur loss on a few that we can’t explain -- they will be checked out by our vet in short order.

Wow, a lot of time away doesn’t seem to amount to much on paper, does it? But I guess that shouldn’t shock me -- time seems to fly by so quickly that I often wonder how anything can happen at all.

Anyway, I’m back, so look for new entries to show up on a pretty regular basis.