Friday, December 28, 2007

Trying to Make Me Normal is Going to Kill Me

In the two weeks since I last saw Dr. G, I’ve come to a frightening conclusion: his determination to treat me as though I’m one of his normal patients is going to be the death of me.

Since my first visit with Dr. G, it’s become increasingly clear that he’s a pretty conservative practitioner who believes that the less we mess with the body, the better. He’s given me reason to believe that he feels drugs cause more problems than they fix, and should therefore only be used as a last resort. This, of course, means that the copious variety of drugs I take every day drives him crazy -- as evidenced when a review my current medications caused him to blurt out, “I have no idea why you’re alive.“

These are not encouraging words to hear from the person you’ve charged with your health and well-being.

In addition to his desire to solve problems without the use of prescription medications, Dr. G also exhibits little patience for the unconventional. I discovered this when we first discussed the cellulitis that had popped up on my right thumb -- he couldn’t keep from rolling his eyes and letting out a derisive little snort when I told him how we’d taken care of other outbreaks I’d had in the past year.

Initially, I was fine with giving his approach a try. I’m usually all for conservative when it comes to my health -- with as many odd conditions as I have to deal with and the number of drugs I rely upon, trial and a lot of error taught me that introducing new factors into the equation can throw my body into a state of total chaos. Besides, I desperately wanted to be back in the care of a doctor in whom I could trust, who understood that I knew my body better than anyone else and treated me as an equal partner.

That’s why I agreed to give his recommendations a try. First, he told me to keep the cellulitis protected by a clean dressing, and to stop treating it with anything, including Neosporin or the acetic acid solution we’d used with great success in the past. Second, he wanted to try to put an end to my severe problems with retaining water by drastically reducing my fluid intake and cutting out the diuretics. And finally, he prescribed a ten day course of Cipro, a broad spectrum antibiotic, in the hopes of it knocking out both my urinary tract infection and the gunk that had invaded my lungs with one shot.

Even though these all sound reasonable in theory, they have all proved to be disastrous in practice.

I stuck with Dr. G’s directive to leave the cellulitis alone, doing nothing more than changing the dressing so it stayed clean and dry. Two days later the infection had grown much, much worse -- the original blister area had blistered again, and the entire region was deep red and angry looking. I knew from past experience that I stood a good chance of ending up on IV antibiotics, so I started to treat the area with the acetic acid solution. There was noticeable improvement in less than a day, and it was almost completely healed in less than a week. Unconventional -1, Dr. G -0.

Next, reducing fluid intake. This was a hard one for me -- I’ve trained myself to drink massive quantities of water each day in the hopes of flushing bacteria out of my urinary tract before they can take hold. (Ever since having a dangerous brush with low potassium due to water toxicity, I am extremely careful to make sure I’m eating bananas and other potassium rich foods to keep that from happening again.) This high volume intake seemed to be working pretty well -- I hadn’t had an infection in seven months, a record for me. But per Dr. G’s request, I cut way back right after I finished taking the Cipro for my last UTI -- I went from drinking a dozen 16 oz bottles of water each day plus some cranberry juice down to drinking only four bottles.

What a mistake. I developed a new infection in less than a week. And now that I‘ve started to increase my intake again, I’m having horrible problems with retaining water -- my legs, ankles and feet are horribly swollen, and there’s enough abdominal bloating to restrict my breathing. So I’ve been forced to do another Dr. G no-no: take Lasix to get rid of the retained water. It’s astounding -- within four hours of taking the diuretic I’ve been putting out almost four liters of urine. You *know* that feels damn good. Unconventional - 2, Dr. G - 0.

And then there’s the infections. If I were just trying to knock out a UTI, a 10 day course of Cipro would have worked fine. But I have pockets in my lungs from bronchiectasis, and it’s all too common for bacteria and other gunk to lodge itself down in these pockets and hang on. My former pulmonologist not only prescribed at least three weeks worth of antibiotics for me when I developed infections, he also gave me a prescription to keep on hand so I could start taking the meds as soon as I saw the telltale signs of a lung infection.

Taking 10 days worth of antibiotics just seems to make things worse, which is what’s going on right now. I wasn’t coughing at all or bringing up any junk before taking the Cipro, but started doing so about five days into the antibiotics. It’s gotten progressively worse. I understand that the over prescribing of antibiotics is problematic. But this doesn’t seem to be over prescribing, it seems to me to be under prescribing -- taking too little of the medication to kill off the bacteria which instead ends up helping the little buggers become resistant to the antibiotics. And that’s bad for me now -- having a death rattle in my lungs that’s adding to the breathing problems from my MS hug and the bloating is just plain miserable -- and it will certainly be bad later if these bacteria become immune to oral antibiotics.

Unconventional - 3, Dr. G - 0. Game, set, match.

Now comes the hard part - confronting Dr. G with the reality that everything he knows doesn’t apply to me and may, in fact, be dangerous. I dread it. I have no idea how I will find the confidence to stand my ground, or what I will do if Dr. G doesn’t agree to let me continue with what I know works. I can’t see sticking with him if all I’m going to end up doing is ignoring his advice and getting worse because of incomplete treatments. But this is a small island -- and the medical community is small. I’ve already been told by three doctors on island that they won’t treat me, and I’m not sure if I’ll be able to find someone else. Nor am I sure I could tolerate being rejected again -- it sounds stupid, but it really hurts to be told that you are too abnormal to be someone’s patient.

It’s a real paradox, isn’t it? I’m too abnormal for some doctors to treat me, and the ones that will try to treat me like I’m normal!

My next appointment with Dr. G is in two weeks, but I’ll be hearing from him before then when the results of the urine culture I submitted today come back. Please pray for me to have the strength to stand up for what I need, and to stand my ground until I get it. Hopefully he’ll understand that my 44 years in this body makes me much more of an expert on what it needs to function well than his 44 days of being my doctor.



Having little faith that the lab would actually send my results to Dr. G (the orders were written by my former physician), on Sunday I decided to send Dr. G a fax to let him know the culture was in process and to expect the results.

As I wrote this fax, I realized it provided me with an excellent opportunity to broach the subject of an extended dose of antibiotics that would take care of my lungs and the latest UTI. So I made my appeal, borrowing liberally from Joderson's well-crafted language about the role of doctors, and sent it off. Some may think of this as the chicken's approach -- I let the fax do the work so I could avoid dealing with this in person. I, however, prefer to think of it as my way of stepping oof the cliff -- now that this was out there, I'd have to talk with him about it.

Dr. G called me early Monday afternoon. He told me he had read my rather lengthy note -- and thanked me for it -- then asked me what pharmacy I used so he could phone in a 21 day course of Cipro. He told me that he didn't even have the culture results in hand yet, but it was important to him to get my lungs (and me) feeling better -- he would deal with the culture later if the results showed the infection wouldn't respond to Cipro.

Throughout the call, Dr. G was warm and funny, and made it clear that despite my maverick ways, he was in this relationship -- as my partner -- for the long haul.

I couldn't stop grinning for hours.

Monday, December 17, 2007

The Rescue of Love Bird Lupe

We saved a life on Friday.

The day started like any other. I was awake, sitting up in bed and watching our cats watch the world while I waited for the Hip Hubby’s alarm clock to go off. We’ve thoughtfully provided numerous vantage points from which our cats can enjoy “kitty home theater” (more commonly known as the critters that pass through our yard) through large windows that are only closed when a tropical storm crosses our path.

Most mornings, Moments after we captured the two month old Love Birdthe cats who are awake spread out -- some take in the view from a giant climbing tower that sits in the bedroom’s screened-in porch, others from the furniture the bedroom’s sitting “nook.” This morning, however, five of our ten indoor cats were jockeying for a position on the arm or back of the white wicker chair that became known as the kitty throne when our alpha cats took to curling up in it and holding court over their subjects.

Now there’s any number of reasons this happens, the most common being that one of the gazillion cute little ground lizards that call our yard home has decided to sun himself on one of the window louvers. But the presence of a lizard was quickly ruled out when I noticed that none of the cats was making an effort to claw at the window screen. Since I knew I’d never be able to get close enough to the window in my wheelchair to see what had entranced them, I listened intently for signs of life other than the scores of tree frogs, crickets, and grasshoppers that happily chirp away in the bushes and flowers that grow outside of that window.

After a few moments, I heard it -- a tiny “tweet” broke through the usual morning chorus. The cats heard it too, and a frenzy of activity broke out as they climbed over each other, each trying to claim the vantage point most likely to provide an unobstructed view of the creature lurking just beyond their reach.

Soon there was another tweet, this one a little stronger and close still to the house. By this time, I’d managed to rouse the Hip Hubby enough to be conversational (no small task, that), although he was in no condition yet to grasp anything more complex than short sentences. Once I was certain that his eyes were able to focus, I waited for the next chirp to ring out, then pointed toward the window where five cats were anxiously pacing, eyes wide, ears pricked, and tails twitching with excitement.

“There’s something driving the cats crazy. No, it’s not a lizard or one of our neighbor’s chickens. Sounds like a bird -- please go look and see if you can figure out what it is.”

He stumbled out of bed and over to the window, doing his best not to trip over the cats that were now alternating between circling in and out of his legs and jumping back up on the wicker chair, eyes glued in the direction from which the intermittent tweeting originated.

“It’s a gorgeous little bird!” said the HH with a big grin. And right on cue, another “Tweet!” rang out as if to say, “Yes! That’s me! I’m found!” The feathered little critter was hunkered down in the foliage just outside of our window, his brightly colored head just barely visible. We were pretty certain that the little guy hadn’t been born in the wild.

Given how small the little fella was, we knew we were his only chance to make it . After all, Mama and Comet, the feral cats we inherited when we bought our house (and parents of five kittens we adopted and domesticated), are both excellent hunters and would quickly discover such easy prey. Although he was skeptical that he’d be able to get too close to the little bird, I convinced my Hubby to take one of our cat carriers and see if he could somehow entice the bird inside so we could take it to our local shelter.

To our great relief and delight, it took the HH less than two minutes to secure our new feathered friend inside the carrier. The tiny critter was clearly hand reared -- he was totally fearless and, after being gently nudged, climbed right on to the twig my husband offered to him as a perch. Once inside the carrier, he seemed to breathe a sight of relief, as if to say, “Thank goodness!” Guessing that he wasn’t able to adequately feed himself during his outdoor adventures, we placed a small container of clean water and some whole grain bread crumbs into the carrier. Our little bird’s relief became obvious gratitude as he dove in and ate with exuberance.

After a quick call to the shelter to make sure they could properly care for him, our tiny little visitor was loaded into the car and on his way to a safe, hew home while I proffered Pounce treats to each of our kitties who made this rescue possible.

After arriving at the shelter, things fell into place so perfectly it was as though it had been pre-planned. My hubby was me by a warm, friendly woman named Liz, the bird lover with whom he had spoken to earlier. She eagerly took the carrier and after a quick peek inside, lead the Hip Hubby into a small exam room. As they walked, Liz told the HH that this was a little Love Bird, probably not more than two months old.

As soon as the exam room door closed, Lupe in Mama Liz‘s handsLiz opened the carrier and reached inside. The little bird must have sensed that she was bird-friendly -- as soon as Liz’s hand closed gently around his small body he let out a contented chirp, then closed his eyes, sighed, and nuzzled his head against her fingers. Liz, in turn, whistled and chirped back at him, putting the baby bird totally at ease while she look him over.

After her brief exam of the bird she had already named Lupe, Liz told my husband that from the tattered condition of the bird’s feathers, she believed he’d had a rough go of it recently. We’d had abnormally strong winds blowing almost constantly for the last few days, compliments of a subtropical storm named Olga that had formed about 200 miles to our northeast, near Puerto Rico. According to Liz, who was still cradling Lupe in her hand, the poor little thing had most likely been blown all around the island, finally landing in the shelter of our yard. She was convinced we had saved his life.

It was clear there was a mutual attachment growing between Liz and Lupe. As a shelter worker, Liz was required to put the bird up for adoption. But after telling my husband all about her other birds as she stroked the soft feathers on top of Lupe’s head, she confided in my husband that if no one had come to adopt Lupe by the end of the day, Liz was going claim him as her own. That was just fine with us, and seemed to be more than okay with Lupe.

And that’s exactly what happened. When the shelter closed, tiny little Love Bird Lupe was settling in with his new Mama Liz and meeting his new birdy friends, and we were feeling pretty darn good about saving the life of another animal.

Friday, December 14, 2007

Home Pharmacology at Its Best…and Worst

The HipCrip Home Pharmacy has been busy these last few days.

Despite a five hour island-wide power failure, I was able to make my follow-up appointment with Dr. G on Wednesday afternoon. There was lots of good news: my post-Cipro culture showed that my UTI had totally cleared up, Dr. G didn’t lecture me about defying his orders by using the acetic acid solution to clear up the cellulitis on my thumb, and I’d lost three pounds since my visit two weeks prior. (The latter was a totally unexpected bonus.)

The lungs, however, remain a mystery. All of my blood work looked fine -- no raging infections present, and no problems with low potassium or other blood salts. (My last trip to the ER ended with me spending the night taking potassium supplements via IV and mouth after a combination of lots of water going in and even more coming out -- thanks to the diuretic Lasix -- caused my potassium to drop to a dangerous level.)

Unfortunately, Dr. G had little to offer me by way of relief for my breathing problems. He couldn’t explain why I was suffering from such bad edema, which I told him was compounding the muscle tension constricting my lungs. (I’ve since learned that this “Michelin Man” problem is known as the “MS (Multiple Sclerosis) Hug” and is quite common among people with spinal cord lesions.) So I took matters into my own hands by taking a full dose of Lasix for the water retention and a tiny little bit of oral baclofen for the muscle constriction.

The results have been good, even if the path to get here was a bit rough.

The Lasix had an immediate effect, drawing out three liters of fluid in about eight hours. (With that much fluid saturating my body, I’m hoping I actually lost more than the three pounds that were reflected by Dr. G’s scale.) To avoid another ER potassium crisis, I’m on the two banana a day plan. It’s now been almost 48 hours since I dosed myself, and the water weight has stayed off. Do I need to tell you that I am strictly limiting fluid intake (on Dr. G’s instructions) so it doesn’t come back?

Although I haven’t been prescribed oral baclofen in years, I keep some on hand. Adding a tiny bit of oral medication to the dose has been known to help out in the past when my legs were, as my husband describes them, unbendable steel bars. Now when I say tiny bit, I’m not kidding -- anything more than a few grains from a 20 mg tablet and I’m so groggy that I sleep for the better part of a day.

Which is exactly what happened yesterday.

It seems that my visual guesstimate on the amount of baclofen I carved off of the tablets was a bit off. Instead of just getting the tension in my legs and abdomen to relax, I ended up with a bit of an overdose, which slowed my breathing and made me so stoned I was unable to do anything except sleep for over 22 hours.

It’s more than a little scary to me when this happens, because I suffered a life-threatening overdose when I had my pump replaced last year. At that time, the doctors found and repaired a small leak in the tubing that connects the pump in my abdomen to the catheter implanted in my lower thoracic spine, but neglected to adjust the amount of medication I was receiving. It seems that quite a bit of the drug was leaking out of this hole in the tubing, because I lapsed into a coma as soon as the full dose made it into my cerebral spinal fluid. It was sheer luck that one of the premier experts on Intrathecal Baclofen Therapy practiced at a different facility within the same medical center -- he was called right away and his immediate response saved me. Believe you me that if I try this again, it will be with the tiniest fleck of medication. I’d much rather get almost no relief than go through that overdose situation again.

Today, I’m pleased to report that I’m mostly back to being my normal self in every way. My brain is free of the baclofen fog, my abdominal and leg muscles are more relaxed than they have been in weeks, and all of the swelling from the extra water weight I’d been carrying has gone. And I’m drawing regular deep breaths without hearing that annoying little whistle-wheeze when I exhale.

I go to get my pump refilled on Monday, at which time I’ll have my doctor bump up my dosage by 10-15 percent in the hope that will be enough prevent my legs from becoming rigid and my lungs from being held hostage by the dreaded MS Hug. But there’s plenty of time to think about that, and all of the stress air travel brings on my body and mind, later. Right now, it’s time to enjoy feeling good for a change.

Tuesday, December 11, 2007

Take a Deep Breath (If You Can)

Tomorrow is my follow-up appointment with Dr. G to check on how well my various injuries and maladies are doing. On the plus side, the cellulitis on my thumb and my latest urinary tract infection seem to be completely healed. But despite taking my 10 day course of Cipro, I’m not breathing any better than I was weeks ago. Normally, that wouldn’t concern me -- since developing bronchiectasis, I sometimes need to be on antibiotics for up to four weeks to get a lung infection to clear up enough to return my breathing to status quo.

But I don’t think a lung infection is the only thing going on anymore. Last week, my DH noticed a new factor in that’s definitely contributing to my perpetual shortness of breath, and I’m worried that solving my problem just got a whole lot more complicated than just taking some additional Cipro.

A little bit of history is necessary to understand where I’m at right now.

When I had my Baclofen pump replaced last year, I discovered that my left leg will act up when some part of my body where I have limited or no feeling at all is uncomfortable. The acting up can take many forms, from twitching rhythmically to one or more muscles tensing up and remaining rigid in spite of our best efforts to relieve the spasms. This has turned out to be a very useful warning device, as it lets me know that trouble is brewing in one of the many areas on my body where I can’t feel sensations like pain, temperature changes and such. (The local nerves, which are healthy, still detect the stimulus, but the signals can’t get to my brain to be interpreted because my spinal cord is so badly damaged.)

When my leg starts acting up out of the blue, I know that something is amiss that needs my immediate attention. The problem could be obvious and easy to remedy (discovering that there’s a large dent in the back of my thigh because I’ve accidentally been sitting on the cap to my bottled water) or more subtle and complicated (internal infections).

Last month, right about the time I first noticed my lung problems, my left leg started developing knots in the calf and thigh muscles that couldn‘t be relieved (think 24/7 Charlie horses above and below the knee). At first, this didn’t concern me -- I thought it was probably being triggered by any or all of the infections that I was battling (lung, urinary tract, cellulitis on my hand). I did my best to cope with the discomfort and looked forward to it going away once I got some antibiotics into my system.

But the antibiotics didn‘t help. And now there‘s new problems that have surfaced, neurological symptoms that may mean that my degenerative spinal cord damage has gotten worse. If that’s really the case, then it may be that no amount of antibiotics will allow me to breathe easy again.

The first change I noticed started last week, after a nap. When I woke up, there was increased numbness in my right arm and left leg (both already suffer from limited sensation related to my spinal cord damage). At first I thought it was just a circulatory problem from sleeping with these limbs extended in very awkward positions. But when it didn’t go away after 48 hours, I reluctantly acknowledged that something bigger may be going on.

The next day, I was feeling particularly constricted around my midsection. I can best describe it as a cross between wearing a Michelin Man costume that‘s a size too small (e.g. feeling like there’s a tight-fitting inner tube or two around my waist) and bending over a 2” x 4” and having it press into your gut. This has been happening a lot in the last month -- I had simply attributed it to bloating from water weight or excess air in my digestive track (an annoying and embarrassing side effect of the problems I have with swallowing). When I commented to the Hip Hubby about this, he gave my belly a poke right below my ribs.

The muscles in my abdomen were rock hard. No wonder it’s been such a struggle to draw a decent breath!

Even though this was a really disturbing discovery (made even more so because it‘s happening at the same time as the other new problems in my arms and legs), it was a relief to figure out why I had been having so many problems that couldn’t be resolved using my usual tactics (diuretics to relieve bloating, etc.)

I’m praying hard that all of these problems are just temporary glitches in my wiring, and that one morning soon I will wake up to discover that my leg hurts less and moves a bit more easily, that my hands aren’t tingling, and that I no longer feel like I’m wearing a metal cummerbund around my waist. But I’m scared -- really scared -- that they’re not an anomaly but instead represent the next level of “normal” as I lose even more spinal cord nerves to the irreversible damage caused by tethering, syringomyelia, and just plain old aging.

I will be mentioning this to Dr. G tomorrow, although I’m not sure what he can do to help me relieve the symptoms. (Who knows -- he has surprised me before.) And if there’s no change by next week, when I go to Puerto Rico for my next Baclofen pump refill, I’ll ask that doctor to up my daily dose in the hopes that it will at least relieve the tension in my legs, and at best get my abdominals to loosen up too. The option of last hope for help is to visit the island neurologist, and see what he may hold in his bag of tricks to make my life more comfortable.

If I may toot my own horn, I’m doing amazingly well in accepting the possibility that there’s a good chance these changes may be permanent. Who knows? Maybe I’ve finally taken to heart all of the advice I’ve given about panic/anxiety/worry/stress not doing a thing except making you feel worse than you already do. It may be small, but at least it means that I learned to do something good as a result of yet another neurological setback: I learned how to take a deep breath.

Monday, December 10, 2007

Body Behaving Badly - The Update

(My thanks to a new online friend, razzle51, for poking me about getting this updated.)

After reaching the end of my rope with being unable to breathe or sleep, I did go see the doctor. Technically, I saw two doctors. The first was a doctor recommended by my former primary care doctor, who retired in September. This appointment was short and sweet, as it turns out that my former doctor never bothered to learn that his chosen successor didn’t do general medicine (she focused her practice on women’s health only).

Even though Doctor #1 wasn’t going to accept me as a patient, she was exceptionally gracious and helpful. After learning that I was there because I was having breathing problems, she gave me a brief . After hearing my lungs crackle and pop and seeing the edema in my legs and arms, this Good Doctor of the West (End of the Island, that is) immediately went about making personal calls to get me an appointment that day with a colleague who could become my new primary care provider. In a textbook example of it’s not what you know, it’s who you know, she managed to get me an appointment later that afternoon with Dr. G, and internist who is also the head of internal medicine at the local hospital. Conveniently, Dr. G had taken care of me when I was hospitalized earlier this year, and already knew that I was a strong-willed woman with a most unique collection of medical conditions.

But the miracles from the Good Doctor from the West did not stop with securing that appointment for me. To make sure that Dr. G would have everything he needed to start treating me at hand, the Good Doctor of the West sent me directly to the Island Imaging Center to have a chest x-ray in time to hand deliver the radiologist’s report to Dr. G. And in a final act of pure goodness, she told us there was no charge. Rather makes me wish she was going to be one of my doctors, you know?

Since moving to our little island, we had become used to…shall we say “laid back” service from doctors. Dr. Former didn’t employ a nurse, and in the three years I saw him he never took my vital signs unless I had brought a specific complaint to his attention. Even so, he only took my blood pressure once (when I told him my last few readings had been high), my temperature twice, and never checked pulse or respiration rates, or asked about my weight. (Since I cannot stand, it’s virtually impossible for any doctor to weigh me, so most settle for asking for my best guess.)

It was apparent that Dr. G never got the memo about island docs being laid back. We were met by Dr. G’s nurse who, after learning I couldn’t stand, lead me to a wheelchair scale! After asking me how much my chair weighed, she directed me onto a rubber mat, clicked a button, and collected a printout before leading me to the exam room. My surprise at finding this very rare piece of equipment in my new doctor’s office quickly became elation when I discovered that I weighed 27 pounds less than I had been estimating for the last few years. How cool is it to lose 27 pounds just by walking into a doctor’s office? WAY FRICKIN’ COOL!

The pleasant reminders about what it’s like to work with a competent doctors didn’t stop there. Upon entering the exam room, the first thing I noticed was the laptop docked at a small desk -- one the doctor actually used to take notes during my exam. (It turns out he has to -- all docs seem to have questionable penmanship but this man writes worse than a quad friend of mine who controls the pen with his mouth.) Before I could finish my nod to my hubby about the laptop, the nurse had placed a thermometer in my mouth, a blood pressure cuff on my arm, and was taking my pulse and respiration counts. The kicker came when she pricked my finger and tested my blood sugar on the spot, which is apparently standard procedure for all their patients as I don’t have diabetes or hypoglycemia. (I wish more doctors down here would do this as diabetes run rampant in the USVI.) Long before Dr. G set foot in the room it was clear to both the hubby and I that we weren’t in Kansas anymore.

The reunion with Dr. G was amusing. He actually said, “Oh no, it is you” when he entered the exam room and saw me sitting in my chair and grinning up at him, a wicked glint in my eye. And then he laughed. When I heard that, I knew that he was willing to work with me, even though he knows that the complicated nature of my health -- and my history of not complying with any advice, rules and/or regulations that I consider to be at odds with my best interests -- will challenge him like no one he’s seen before.

After all of that, the actual exam was pretty ordinary. The lung x-ray should some evidence of pneumonia, and a urine culture I had done the week before showed an infection there, too. So 10 days on Cipro (prescribed in the hope it would be a double whammy and knock out both infections), another urine culture after the last Cipro tablet is taken, and then back to see Dr. G on the 12th.

I also casually mentioned to Dr. G that I was having another outbreak of a recurring infection that had been plaguing the finger tips on my right hand. So naturally he asks me to take off my band aid so he can take a look at it -- and he freaks out. He immediately diagnoses it as cellulitis, and starts worrying out loud that it has invaded the bone. I assure him it hasn’t, to which he asks how I know. And I tell him that I just do -- which I do. Really. I have an amazing talent of knowing when problems with my body are superficial and when they are worth worrying about. Many of my doctors eventually come to trust this (I had a neurosurgeon who told me that he was certain I could tell I was having neuro problems at least six months before an MRI could provide evidence of it). However, being a newbie to my world, Dr. G sent me off for blood tests and an x-ray of my thumb just to be sure. He also told me to lay off treating this infection with anything except a clean, dry dressing -- especially the treatment that worked best, a twice a day application of a .25 percent acetic acid solution.

And with that, off I went.

There’s something about antibiotics that do strange things with me when I have lung infections -- namely, I always seem to get worse after I start taking them. And this last dose was no exception. Even as I watched (and felt) the UTI clear, my lungs got worse. Five days into the 10 day treatment schedule, I started coughing; until that time, I had only been struggling for breath and wheezing upon exertion. It wasn’t a day later before I brought up the first bit of lung gunk in a lovely shade of neon not mean to be found in the human body. And it hasn’t eased up since, even though I finished the Cipro four days ago. The question remains: did the Cipro cause the phlegm or was the phlegm there all the time, and the Cipro just helped to get it out?

The thumb also got worse, and fast. The day after I had my blood drawn and the x-ray taken, it did bad things I won’t describe here to protect the squeamish. As soon as I saw what was happening, I set myself up for my first clash with my new doctor by starting treatment with the acetic acid. That was 10 days ago, and the wound is almost totally healed. I’m not quite sure what made Dr. G so opposed to the treatment Dr. Former had prescribed (it may have been just that: it came from Dr. Former). After all, it didn’t involve more antibiotics (I’m developing resistances and have to be careful about how much and when I take them), and most importantly, it worked. I guess we’ll find out when I see him on Wednesday, when I‘ll also get the results from the blood work and x-ray. As he handed me the x-ray orders, the good doctor assured me that if it showed there were any evidence that the bone had been compromised, “I would be admitted to the hospital for IV antibiotics so fast I wouldn’t know what hit me.” Since I’m writing this from the comfort of my own home, I’m pretty sure I was right about this being a superficial problem.

My appointment Wednesday ought to be very interesting indeed.

Monday, November 26, 2007

Can’t Sleep, Can’t Breathe (Or More Tales of Body Betrayal)

Forgive my bluntness, but I feel like crap right now. I’m going through yet another period in which various bodily functions are going haywire, and my attempts to correct its bad behaviors have been almost entirely unsuccessful. And it’s getting old.

Most frustrating, and the malfunction that’s causing the most hardship, are the problems I’m having getting any restful sleep. Just about the time I started needing a wheelchair, I became what can best be described as a bi-polar sleeper: I would survive on only a few hours of sleep a day for weeks at a time, and then crash and sleep almost uninterrupted for days. I managed to make this work for me, though, and it didn’t seem to cause me any problems as long as I didn’t try to force my body into doing the opposite of what it was inclined to do.

Right now, I would sell my furry little children to get a few solid hours of sleep at night. It’s been weeks since I’ve been able to sleep through the night. This has happened before, but now I’m also unable to sleep during the day either. Nodding off isn’t the problem -- I feel like I’m doing that all the time, including once in the middle of writing this -- I just can’t stay asleep. If I’m lucky, I’ll manage to doze for up to 30 minutes before I jerk myself awake again. It doesn’t help that I’m having pain flares at the worst moments (e.g. right as I start to relax and drift off). And it just annoys me to no end that taking the pain meds, in doses large enough to drop a small pony, doesn’t do a thing anymore to promote drowsiness.

I’m starting to feel like a sleep deprivation experiment. I’m so exhausted that I’m woozy -- I’ve got that swimmy-brain feeling more often than not, and I actually get nauseous
from it sometimes. And my nerves are shredded (as my long-suffering hubby will attest), which I’m pretty sure is contributing to the muscle knots I’ve been battling in my left leg and calf (not exactly helpful when it comes to getting restful sleep in their own right). The really sad part is that the emergency medication I take when my legs get that bad, which is usually so powerful that taking even 1/20th of a tablet (1 mg) typically knocks me out cold for 24 hours, isn’t doing a thing to help me get some rest. *Sigh.*

Adding to my discomfort is the hard time I’m having breathing. Even though two different forms of lung disease had reduced my lung function by half, I’ve learned to adjust pretty well. In fact, when I’m doing well I don’t notice any breathing problems at all -- I can even swim 1000 meters without ending up gasping for air. But lately it’s felt like I’m wearing an iron cummerbund that’s two sizes to small -- and that’s at rest. Moving about, even doing as little as transferring into my wheelchair, leaves me huffing and puffing like the Big Bad Wolf taking on the brick house, and my rescue inhaler isn’t bringing me any relief. (I’ve been scoffing every time an asthma medicine commercial comes on that includes the claim that you shouldn’t need to use a rescue inhaler more than twice a week -- lately, I’ve been using it twice a day before lunch!)

It can get pretty scary laying in the dark and realizing that you’re gulping for air and wheezing. It’s even more frightening to have no idea if the problems are from an infection, or if the syrinx in your brainstem has started putting pressure on the nerve bundle that regulates breathing. And no matter how much you hurt, it makes you wonder if not being able to sleep might be a good thing, though, because those mega-doses of pain meds you rely on have the nasty tendency to suppress respiration. (So does Ambien and other sleep aids, which is why I’m not rushing to the pharmacy to fill one of my prescriptions.) Not exactly a good thing at any time, but it’s the last thing I need when it’s already hard to draw a satisfying breath.
So as much as I don’t want to, I’m going to give in and go to the doctor -- a general practitioner, to be precise. A new GP, since the one I had been seeing, who had finally learned all of my peculiarities (like even at my best, my lower lobe in my left lung sounds like Rice Crispies freshly doused with milk) just retired. I had hoped to be able to do what has become my standard procedure for new doctors -- making and paying for an appointment that has no purpose other than handing off records and getting to know one another without illness complicating the new relationship. But it seems that luxury has past. At least I can finally get my mammogram done if she orders a chest xray.

Wish me luck, that this is my last sleepless night, that my lung problems need nothing more than a hearty round of Cipro, and that my new doctor (a woman) will realize that no one knows my body better than me and do what my best doctors have always done: combine my instincts with their expertise.

With all of the complications that my friends and family have been through with me, I know I’m not the only one who’ll be breathing a little easier when this latest body betrayal is over.

Friday, November 23, 2007

‘Tis the Season to be Pissy

Well, here we go. It’s the official kickoff of the “holiday” season (even though our local Kmart has had their Christmas stuff out since mid-October). And I want no part of it.

I detest the holidays, and do not celebrate Christmas at all. I don’t decorate, don’t buy gifts for friends or family, don’t send cards, don’t partake of a big meal. Christmas day is, in our house, absolutely indistinguishable from any other regular day, except that we know we don’t need to- go -pick up our mail.

My grinchiness comes from both the past and the present.

My Mom was a huge Christmas person. She decorated the house, shopped year round to find the perfect gifts for everyone, did the card thing, and always prepared a big holiday dinner. She even hand-made all of the ornaments for her Christmas tree, hundreds of hand sewn, stuffed, and sequined works of art lovingly made.

But while this made for the perfect holiday environment, our family dynamic when I was growing up was not so perfect. Mom and Dad frequently got into spats during which they wouldn’t talk at all, and would barely interact. But regardless of how bad they were getting along come December, we were always expected to play along with the Christmas rules: buy and wrap presents for each other, and play happy on Christmas Day, even if no one had said a word to each other for week prior to that. I hated it, and I resented being forced to sit and smile for pictures, and worse, to suffer through the agony of watching the two of them open gifts from the others and try to appear civil and grateful for the thought and effort put into each package. If I dared to express my true feeling, I was called Scrooge and berated for not playing along.

As I got older, I began to understand the excesses that went along with Christmas, both in my home and throughout society. I always knew I was blessed, and I felt grateful every day for being born into the comfortable life I had inherited. But my feelings of gratitude became feelings of guilt and anger when, despite my objections, people bought me things I neither needed nor wanted, simply because a calendar told them it was time to give me a present. (I’ve never been a fan of giving gifts only because it’s a particular day -- gifts should be given because the giver wants to, not because she is expected to, honor and/or surprise the recipient.) My disgust for this holiday has grown as the commercialism and excess associated with it have increased.

As an adult, there’s only one Christmas tradition in which I enjoy taking part -- being a Secret Santa for a child or family who has true need. The city where we last lived had a wonderful program that we participated in each year. Volunteers were able to tailor the amount of their gift by designating, in generic terms, what type of recipient they wished to shop for (individual child or adult, family with a specific number of children, senior). We loved the program because it provided a very specific list of your adopted “giftee’s” needs, including sizes, and gave us the option of either delivering the gifts in person or being an anonymous Santa by letting the program staff bring the gifts to the participants. It broke my heart to see children whose dream was for Santa to bring them socks or a winter coat, or an elderly woman who just wanted a thick blanket so you could be warm while she slept. Because we didn’t buy gifts for anyone else, we always had the funds to go above and beyond the basics they needed and buy toys, gift certificates for the movie theaters, and other items that would bring them a bit of fun. I’ve never had as much fun, or felt as good about Christmas, as I did when we were making purchases for our adopted family.

Providing others who have nothing, and expect nothing, with both some of the essentials they need to survive and some luxuries they never thought were within their reach seems to me to be the real embodiment of a core Christian value. In my not-so-humble opinion, a whole lot of holier-than-thou Christians would do a lot better in the eyes of their god by celebrating the Christmas holiday by giving selflessly to others, with no expectation of reciprocity or even acknowledgment, instead of buying even more crap for people who are already overindulged with the latest techie toys, hottest designer clothes, and flashy jewelry.

Merry Pissiness.

Thursday, November 22, 2007

Choosing Between Pain or My Brain

From all outward appearances, this blog ought to be jam packed with entries -- at least one a day, if not more. After all, I like to write, have never been lacking for something to say, seem smart enough to put thoughts together, and don’t have one of those pesky job thingies that tends to eat up so much of most people’s time.

And yet, only 30-some entries in six months. Just. Plain. Sad.

The reason is that really great drugs ate my brain. But not in the George Carlin, psychedelic-era, “Doesn’t my hand look weird? Ooh, say hand out loud, doesn’t that sound funny?” kind of drugs. (I wish.) Sadly, these drugs are the harder to get, by prescription only, cost you a fortune, give you a life if you need them but steal your life if you don‘t prescription drugs. Taken is pretty large doses, every day.

Now I’ve taken drugs that screw my brain before. Back in 1991, I started taking an antispasmodic medication called baclofen. This drug is terrific at calming down misbehaving muscles, but taken orally it can knock you out. Fortunately, your brain gets used to it being in your body and you soon don’t notice it at all in terms of awareness and mental agility. At my peak dosage, when in Las Vegas at a work-related conference, I was so immune to the mental slow-down baclofen causes that I was able to wash down my dose of baclofen and a Darvocet with half of a James Tea Kirk (basically a clear glass bucket of blue Long Island Iced Teas with gummy worms in the bottom that’s served at Quark’s Bar on the Promenade at the Las Vegas Hilton). Not only was I conscious after this risky little adventure, I managed to leave the bar and make well-received contributions at two conference breakout sessions and then win several hundred dollars by hitting a royal flush on a nickel draw poker machine. (Responsible adult and CMA note: This was a really stupid thing to do -- the mixing drugs and alcohol thing, not the winning money at draw poker thing. No one should try it, especially those fond of breathing and thinking.)

When it came time to go off of oral baclofen (it eventually became ineffective on my muscles, so I traded up to Intrathecal Baclofen Therapy - IBT), I was told by my doctors that even though I didn’t think my brain was foggy, I would be shocked at how much more clear my thinking became. This scared the behoosis out of my husband, who sometimes had a bit of a time keeping up with my hyper thoughts when I was under the influence. And they were right -- I did pick up some mental acuity that had been lost to the baclofen. After I started IBT, I got to take my brain for a run for the first time in 10 years. It felt good. It was something I could get used to.

It was something that was all too short-lived.

A few months after the transition to IBT, my chronic pain began to get worse -- a lot worse, and fast. Over a vew short period of time, I went from happily existing on the occasional Darvocet to taking Oxycontin and Oxycodone, the big dogs in the pain management park. And these big dogs started eating my brain.

At those early doses, it wasn’t too bad -- certainly no worse than I was on a bad day when I was on the baclofen. But now that it’s necessary for me to take pretty high doses of these narcotics just to stay comfortable, I‘m paying a high price for that comfort -- and I’m not just talking about the criminally high prices charged by the pharmaceutical companies. I used to be able to manage three or four tasks at once, then I could only do two, and now one, if I take a lot of distraction breaks. I was never able to just sit and watch TV or a movie in the days before the Oxy drugs became a way of live-- I had to do something else like play a game or write or do some crafty-type project so I didn’t get bored. Now, it’s necessary for me to give certain fast-paced shows my full attention, or else I turn into that annoying person who keeps talking over the action to ask who said what or did what to whom. But my biggest loss, the one that I grieve for most, is my ability to read for long periods of time. But with the opioid-soaked brain, I’m lucky to be able to focus long enough to get through a chapter now and then instead of knocking off a novel every couple of days.

Now don’t be mislead by my pissing and moaning…I’ve not been reduced to a glassy-eyed simpleton who now considers the funny pages challenging reading. By all accounts, I’m still better off brain-wise on drugs than some folks are at their best. But when you’ve spent your life knowing that your body is probably going to self-destruct, you get pretty darn attached to keeping yourself mentally fit. So it’s been difficult to accept that my choices are to be in pain (which plays its own form of hell with being able to think) or to be somewhat comfortable but a lot foggier than your used to. Still, when it gets down to brass tacks, it’s a no-brainer. Literally.

So while I miss being a walkie, I miss my brain more. And that means that my secret hope for a short-term medical miracle isn’t a cure for paralysis, it’s that they develop a drug that will kill the pain, without killing your brain along with it. And I bet I’m not alone.

Monday, November 19, 2007

Alone Again, Until...

An ex of mine had a philosophy on life that seemed rather morbid when he first put it forward, but as I’ve grown older, it’s made a lot more sense: “No expectations, no disappointments.” Given the events of the last few weeks and the spectrum of emotions they‘ve elicited (particularly where I‘ve ended up), I’m wishing that I’d done a bit more to embrace that perspective.

It started with a response to a blog entry I received from one of my most cherished friends, in which he mistook my willingness to accept my circumstances as courage when they are, in fact, pure cowardice. It seems that I didn’t really like admitting that I was nothing more than a big ‘fraidy cat, because after three plus years of being committed to a reality in which there is no surgeon out there who could help me (if I were to somehow change my mind about being cut open again), I started researching the wonderful world of neurosurgery.

After a few days of digging, I happened across a web site dealing with syringomyelia, a condition I have, that also talked about spinal cord tethering. I started reading some stories about the miraculous results that people were having thanks to the doctors at the Chiari Institute, and it happened: I started to feel a flicker of hope.

But even more than hope, I started to feel less alone. In my now 30 plus years of living with an anaplastic astrocytoma, I’ve only ever met one other person who shared my diagnosis and lived for as long as I have. Just that diagnosis alone made me feel like an orphan in the world, feelings that only intensified as I survived more life-threatening experiences and was diagnosed with other rare diseases. No matter where I looked, I couldn’t find anyone who could come close to relating to the realities of my life…until I found this web site. To my astonishment, the first reply to my introductory post is a woman who has survived many of the tribulations I’ve had, and my hope that I had found people whom I could commiserate, who would truly understand how frustrating it is to live as an anomaly, soared.

Then I started really reading the site in its entirety, and all of those hopes were dashed. In my elation, I failed to grasp that the talk of de-tethering on this site referred to (in the most basic of terms) the releasing the lower end of the spinal cord to the bottom of the spinal column, which has no relation at all to the surgery needed to release my cord. When that was brought to my attention, the spark of hope that the Chiari Institute could offer me any relief, or even better odds for coming out of a detethering/duraplasty procedure better off than I went in was snuffed out.

And the more personal stories I read, the more I felt that while we all have at least one degenerative spinal cord disease, the people with the specific diseases covered on the web site were, for the most part, very different from me. Some are just much earlier in the course of their disease than I am…many have just been diagnosed. Most just don’t appear to have symptoms as severe as mine. This is not meant to dismiss the pain and suffering those good people must endure, it’s just a conclusion made on quantifiable evidence including number and dosage of medications needed to function part of the time. I just can’t see someone who only needs to take a small dose of a muscle relaxer to get relief from spasms to understand how it feels to have plasticity so severe that I have a pump implanted to deliver medication directly to my central nervous system, take the maximum daily dosage of another oral anti-spasmodic drug, and still don’t get more than 60 percent relief from the tension, twitching, and knots.
The emotional crash that occurs when what seems to be a long-sought and much needed oasis is discovered to be nothing more than a mirage has always hit me hard, but for some reason this particular experience knocked me down harder and is on track to keep me down for longer than other times I’ve been through this. I suspect it’s because I went into this search under a shadow of fear that this is exactly what would happen. It’s not in my nature to re-open decisions I’ve made, and it’s definitely not my typical M.O. to ignore nagging red flags, yet that’s exactly what occurred.

Despite the lingering effects of those crushing emotional blows, I was able to confirm with a sky-high degree of certainty that my only options are having a horribly risky surgery, and that there isn’t a neurosurgeon out there who has any experience with anatomy as fucked up as mine. Again, this statement is not meant to belittle the very serious problems faced by others. It’s just a matter of fact that there are astronomically poor odds of finding someone else has:

  • had 90 percent of their cervical spinal cord removed,
  • a 90+ degree kyphosis,
  • a 35 degree scoliosis,
  • a brain stem syrinx,
  • tethering of the remaining cervical cord to the dura,
  • posterior and anterior spinal fusions from C2-T4,
  • had 6000 rads of radiation to the cervical and thoracic spinal cord, and
  • who had to have their left trapzius muscle removed and used to cover a previous spinal incision when a leak of cerebral spinal fluid couldn’t be repaired through more traditional means.

On good days, I look at all I’ve been through and am astonished at what a miracle it is that I am alive and can do so much. On bad days, I see all that and all I feel is lonely...

...until, seconds before posting this entry, that same dear friend mentioned earlier replies to the pouty, "oh poor me" email sent minutes before I put these thoughts to paper, and from over 2000 miles away makes me feel special and loved and embarrassed, and far from alone.

Everyone should be so lucky to have such a wonderful person in their life.

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.

Tuesday, July 10, 2007

One Night in the ER (Part 1)

What a week.

A week's worth suffering from nausea and general abdominal discomfort came to a climax Saturday night when the pain decided to centralize its location down near my right hip. Right over my appendix. Where it proceeded to get worse.

By 8 am, the constant, searing pain was doing a Rich Little worthy imitation of having a heated steel tipped spear protruding from my gut, and had become so unbearable I finally conceded I should get it checked out. So off to the ER we went, praying we'd get there during the downtime after all the Saturday night drunken bar fight survivors are cleaned up and released but before people start having heart attacks following a huge Sunday after church dinner laden with rich, fatty food.

The on-island hospital is always overcrowded and understaffed, so even though we'd hoped to get right in it took us three hours just to get through the triage and another hour and a half to be taken back to a room. One of the reasons for the delay in being seen was that the hospital was full, which meant that patients who were already admitted to the hospital had remain in one of the ER's 16 beds until a bed became available upstairs in the main hospital. There were already 21 people stacked up before I was called back, so I was packed onto a gurney and, with the aid of axle grease, a shoehorn and a physicist, wedged into an elevator sized cubicle next to its previous occupant.

I had no idea when I rolled in and saw her puffing deeply on a steaming nebulizer that the older woman, with skin the color of the most expensive finely polished brown leather and eyes that sparkled like 10 carat diamonds, would be one of the most incredible people I've ever met.

As I predicted, the doctor on call -- already quite wary of me as he one of the victims of my previous battle to avoid being admitted and had taken quite a verbal beating when sent to tell me that bad news -- ordered blood work, urine tests and an ultrasound of my abdomen. To my great relief, the sonogram of my appendix was 100% normal, confirmed on the spot by the radiologist who was called in to verify the technician's findings. All possibility of an appendicitis and emergency surgery was eliminated when the blood results came back and revealed that my white blood cell count was also normal.

However, the rest of the blood results and urine tests failed to bring good news: they showed I had yet another urinary tract infection and worse, the sodium and potassium levels in my blood were dangerously low. Because low blood salts can cause brain damage and even death, it was decided that I should be admitted to the hospital to receive IV treatments to boost these levels. I agreed to a compromise of staying overnight in the ER (not that I would have left there to go upstairs if admitted with all of the hospital rooms filled) and see if the IV treatment solved the problems before agreeing to an all-out hospital admission.

So they started my IV, gave me an antibiotic, ordered a culture to see what specific nasty bug had invaded my body, and settled me into my tiny little cubicle with the ugly hospital green walls and hideous green poly-blend draw curtain that was supposed to provide privacy. And there I waited, hoping that both the hours until morning would count down and my blood electrolyte levels would go up quickly.

Saturday, June 30, 2007

The Medical Bait and Switch (aka "Medical BS”) PART 2

At the time I was hospitalized to explore why I was deteriorating so rapidly, I was already a myelogram veteran having had one the year before. I was scared to the point of shaking at the thought of having to repeat something all but guaranteed to cause as much pain as I had after the tumor removal surgery that followed the original scan. I reluctantly agreed to go through the sticks, swivels, and sucks of this invasive examination only if I was knocked out before my little backside left my hospital bed. The gruff and more egotistical of the talented pair of surgeons who had kept me alive and walking through round one of the battle with the astrocytoma agreed, and the test was on for the following afternoon.

It took less than two hours for his BS to begin. As he came back by my room during evening rounds with his kindly old grandfather-type partner doctor to discuss plans for me, the nice one of the two asked me how I was feeling about needing to go through this torment again. I told him I was doing just fine because I would be unconscious before I ever saw them and hopefully remain that way long after they completed their sadistic acts. That's when Dr. Crapola jumped in and said that I may not be totally out, but I would be so doped up that I wouldn't know where I was or what was going on. I was as irked as a 15 year old teenage girl could get (i.e. pretty darn annoyed) but since I'd still be out of the clutches of the pain demons, I decided I could live with that and tried to let it go.

BS stage I last until morning, when the doctor's tune changed keys again when he informed the entourage doing rounds with him at 7 am that "the patient" would receive a sedative before the test but may still experience some discomfort. Irked went out the window faster than an illicit lover when a husband comes home long before his adulterous wife expected him, and full-out anger moved in.

I seethed until the nurse delivered some Valium about 30 minutes before I was scheduled for the test. It didn't take too long after she injected it for a bit of calm to wash over me, not enough to keep me from being tense when I slid from bed to gurney, rather just enough to keep me from clawing the eyes out of the next person who said "boo" to me in a tone of voice for which I didn't particularly care. But that sedative effect I was promised hadn't arrived by the time I was wheeled from my room to the stacked up in the hallway of the radiology department like we were airplanes circling an airport with only one plowed runway in the midst of a blizzard, and I was becoming more agitated with every passing minute.

When I could stand it no longer, I put my parents on the lookout for the doctor, and I confronted him about when I would be getting the rest of my happy drugs as soon as my family waylaid him. I started to get a whiff of even more doctor BS before the surgeon even opened his mouth. He informed that I'd received all the meds that I was going to get. It probably goes without saying that this answer had the opposite effect of the drugs on which I was counting. I sat bolt upright, totally nullifying the benefits of any Valium that had managed to take effect thus far, and made a grab for him while demanding to know what the hell he meant by "that's it for drugs". Before he could reply, I reminded him that the deal was he got to do the procedure only if I would be oblivious, and pointed out the obvious: that I was clearly anything but unconscious and was, in fact, only seconds away from rolling down off my gurney to cause him as much bodily harm as a skinny girl with rapidly declining strength and no sense of balance could deliver.

This arrogant bastard, after assuring me that I would feel nothing in front of the same witnesses he now stood before again, looked me right in the eyes and told me such a load of bull that the methane it generated could have powered Cleveland for a year. He swore up and down in that arrogant, condescending tone that's almost a trademark of neurosurgeons that he had never said anything that could be interpreted by anyone older than six and with half a brain as agreeing to make me a zombie before they turned me into a voodoo doll on the wrong end of a vacuum cleaner. As you might imagine, this boldfaced lie didn't sit too well and I went into the myelogram in a state bordering on total terror. If I were a cat, I would have been hanging upside down with all four sets of claws sunk deep in the ceiling with my fur puffed out like I was recently rubbed against a big balloon. Even so, I survived, and I left that little lead-lined room unconscious and a lot more suspicious of promises made by doctors.

I wish I could say that I was never again the victim of a broken promise from a medical professional. But it's happened again and again. A pain management specialist tells me there's lots and lots of non-narcotic options that will alleviate my pain only to offer me two, neither of which brings me any real relief. This bait and switch, plus the unrelenting pain, sends me into a debilitating depression. I finally agree to visit the ER to get started on antidepressants, and tell the resident assigned to me that I'm totally despondent because doctors keep promising to help me and then fail to deliver. The resident assures me that getting me started on antidepressant meds will be no problem. But after consulting with her attending doctor after subjecting me to a two hour complete psych workup, the resident becomes part of the problem by pulling her own bait and switch, informing me that the attending won't prescribe meds but instead wants to hold me for inpatient care. The scary part is that this doctor in training couldn't seem to grasp that she had just become part of the problem that caused my depression in the first place!

And so it goes. Remember the old saying, “Fool me once, shame on you; fool me twice, shame on me” ? Well my experiences made me expand that bit of wisdom by adding, “Fool me thrice and you must be a doctor.”

Friday, June 29, 2007

The Medical Bait and Switch (aka "Medical BS”) - PART 1

I have a deep distrust of doctors, but not for the same reasons that most other people do. Years of experience have taught me that there are some total incompetents out there, for sure -- but I've also worked with some truly wonderful physicians possessing both skill and personality. But almost all of them, from the nice and competent to the nasty and dangerous, are guilty at one time or another of an unforgivable sin.

They are guilty of pulling a medical bait and switch. (I like to call it what it really is, plain ol' BS.)

This type of BS is really no different than that practiced by appliance salesmen with cheesy mustaches who reek of cheap after shave and wear bad suits and too much hair gel who promise you a brand name appliance and deliver the same…if you live in North Korea. Doctors do the same thing: tell you something they will absolutely do for you and then start backpedaling on their way to delivering something completely different.

The BS I'm talking about has nothing to do with the reality that medicine is an art, not a hard and fast science. I'm talking about flat out deception, the total bullshit of promising something with which you don't come through.

My first experience with a BS doctor occurred when I was 15, the year after my first tumor surgery. I had begun to have bad neurological symptoms again -- muscle weakness, sweating 24/7 like I was wearing wool during an Ecuadorian summer, loss of sensation, and I would fall over as easily as my spouse did when he bent over, placed his forehead against the tip of an upright baseball bat, spun around five times and then tried to run. This was years before the invention of magnetic resonance imaging, so I had been admitted to the hospital for a myelogram by the same surgeons who first diagnosed and partially removed the spinal cord astrocytoma that plagued me for two years before someone finally figured out what was wrong..

Myelograms, as anyone who has been misfortunate enough to have this procedure will attest to, are horribly painful to endure. After being placed, face down, on a tilt table under an x-ray imager, doctors insert a hollow needle between two of the vertebrae in your lower back and use it to drain out some spinal fluid ("CSF"). This sample is sent off to the lab to check for blood and infection while the doctors inject an iodine-like contrast material into the spinal canal. Once the contrast is in, they begin to tilt the table down so the imaging material can be photographed as it runs up around your spinal cord toward your brain. And even though these early parts of the exam may sound only slightly better than, say, slamming your hand in a car door, the really excruciating pain comes after the scan is complete.

For reasons that will remain unknown to me, it is necessary for the doctors to remove the contrast once they've captured all of the x-rays they need. That's why the doctors performing the test leave the needle in your spine while you're being rotated ass over teakettle. Extracting the contrast isn't nearly as easy as taking out the CSF at the beginning of the myelogram, which dribbles out slowly, and without any discomfort, under its own power no matter what position in which your body is aligned. The pseudo-iodine, on the other hand, needs to be coerced out with a syringe. So once these medical sadists are satisfied that they've seen all there is to see of your nerve centers and your blood pressure is high enough to be seen by the pilot of any 757 that may be at cruising altitude over the hospital, they crank the table 180 degrees to transform you from a imitating vampire bat at rest into a Buckingham Palace guard at full attention.

Having the contrast material forcibly withdrawn from your central nervous system can only be described one way: its as though the women and men in the white coats have slipped the best Hoover on the market into the room when you were, um, "distracted" and are now attempting to suck out a sample of gray matter from your brain by way of your bum at the same time someone has stuck a bicycle pump up your nose and was attempting to inflate your head, cartoon-style. It is agony that rates as some of the worst I'd experienced, and one of only two forms of pain that have made me pass out. (The other occurred during electromyography on my hands and arms, which involves long needles and electric current. Enough said.) And as if that wasn't enough fun to top off this little carnival ride from hell, you can be plagued with knock-you-down-and-make-you-cry-for-your-mama headaches unless you lay flat on your back for at least 24 hours after the needle is finally plucked from your wrung out, and probably passed out, body.

Thursday, June 28, 2007

You're Home -- Surprise!

Every homeowner knows that no matter how much research you do, or how thorough your owner interviews or home inspections are before you buy, you're always going to have a few surprises that will make their presence known after you've moved in. This month marks our three year anniversary in our tropical home, and we have both fingers and toes crossed that the surprises have all popped out of hiding by now.

One of the most common causes of a homeowner saying, "Gee, I really wish I'd known that earlier" are the sounds of your new home. This home is quite different than our previous ones, though, in that almost all of the new noises we discovered originate outside of our house. Now by no means is the city traffic noises I've learned to loved over the years. In fact, there's not a lot of traffic that goes by our house. And the little bit of road life we do have consists mainly of cars and one dedicated water delivery truck that valiantly struggles its way the rest up the hill of the on which we live.

Our soundtrack to life is much more organic. Instead of motor vehicles, our main traffic is from crickets, little frogs, and other chirping critters. The night time brings blessedly cool breezes and a chorus clicks, trills, warbles and other amphibian and bug noises was downright deafening to us during the first few weeks after we moved in. And that's from a woman who wasn't disturbed one bit by the fleets of city buses that drove past her apartments at 5:30 am. Now it's a welcome, soothing background noise -- excellent white noise when it's on and early warning of dangerously bad weather when it's off.

So, I hear you pondering, if not bugs and no traffic, what could it possibly be?


But it's not the daytime feathered friends who pay a visit to our fruit tree and flower filled yard. The cowbirds, which look like scaled down snowy egrets, eat the grasshoppers and only let out their yelping squark when extremely agitated. (Trust me, it takes a lot to rile those long-necked creatures up.) I rather enjoy the gentle coos of the dusky brown mourning doves that populate the grove of tan-tan trees at the northeast corner of our house. And it's certainly not the rustle of the emerald crowned hummingbirds that flit from the trees with the fragrant, yellow bell-shaped blossoms to the stalks of vivid red and yellow crescent moon flowers that bloom outside of our bedroom window.

No, the wild birds are just fine. Our local noise pollution is produced by our neighbors loud, obnoxious birds.

Like the Hawaiian islands, the Virgin Islands are plagued by tough as nails, vocal, ratty-looking wild chickens that have free run of the island. Until last fall, our little corner of the estate in which we live was happily poultry free -- the nearest flock of these free-range fryers hung out at the entrance to our side street. Some days when we were making our way home, we'd make the right turn onto our street to be greeted by a momma hen and her fuzz ball little yellow peeplets strutting around someone's yard or with one lucky chick riding tall on his momma's back, triumphant in the chicken version of King of the Castle. These guys were far enough away that we never heard then unless we were passing them in the car with the windows down and the radio off, and the never demonstrated a bit of interest in venturing further than their corner.

But about eight months ago, for some unimaginable reason, our neighbors to the north released a dozen chickens into their back yard, which is separated from our yard by a shared chain-link fence. Included in this flock are not one, not two, but three loud roosters, all of which suffer from serious time dyslexia that cause them to belt out the most sad, but loud, excuses for a cock-a-doodle-do that you've ever heard at all hours of the day and night. Two of the offenders have a special knack for performing their pathetic little trumpeting duet every hour on the hour from 2 am on, which is of course answered by distant roosters as though this was hot neighborhood gossip worthy of an immediate and appropriately enthusiastic response.

It would be one thing to have all of the scraggy-ass chicken yodeling broadcast from within the boundaries of our neighbor's yard -- it would still be loud, but there would at least be a large buffer of tall grass and trees to help muffle a few decibels before the noise reached our bedroom window. But no….the little bastards have started flying over the fence or using a pile of dirt as a land bridge to hop the border, where they then fall in directly beneath our large open bedroom window before letting loose with both lungs. (Hmmm...perhaps I should invite the idiots in Congress down to get a firsthand view of how easily fences can be breached by the truly determined so they will revoke their asinine votes to spend $60 billion on a certain 700 mile fence...)

Ever been jolted from a sound sleep in the middle of the night by a rooster crowing less than 10 feet away from your bed as though he were Paul Revere and had just spotted the British coming over the horizon with muskets blazing? If you answered no, you'd be wise to do everything in your power to make sure that answer never changes.

As if the poultry weren't loud enough on their own, they have a vocal companion. The same neighbors who deliberately brought a brood of chickens into our peaceful little neighborhood -- who seem to be completely deaf to animal noises of any kind -- also own an indescribably loud all white cockatoo. This shrieking nightmare's internal clock runs in a totally different time zone than its free-range step-brothers' and sisters' so we've become an unwilling audience for this 24/7 squaaaack-cluck fest.

Their fondness for, and apparent obliviousness to, boisterous winged creatures aside, these are nice neighbors to have. So putting up with the audio track from a jungle chicken farm isn't really the worst possible surprise we could have had when we got settled in at home. God help us, though, if they ever branch out into peacocks or ostriches.