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.

Tuesday, June 26, 2007

Wow, Does That Song Take Me Back

As my husband and family will tell you, my memory -- although fading now from (gulp) getting older and from taking pounds of medication every day -- is pretty darn good. I've been very fortunate that I've been able to use my knack for remembering numbers into something employers have found to be particularly attractive -- being the only person in a non-profit with any semblance of budgeting skills can make one a very, very popular.

In fact, I remember all kinds of things without too much effort, but what really excels is my musical memory. Now when I refer to a musical memory, it's not just a knack for remembering song titles and lyrics. There's something that enables me to use the music as a key to unlock other parts of me memory, which has come in pretty handy at times.

For example, classical music got me through college. I learned that by playing some classical music in the background while studying for subjects that I didn't, shall we politely say, care for enabled me to call up very specific bits of knowledge just by recalling the selection that was on the CD player when I last studied that material. To this day, I can't listen to an economist talk without hearing little bits and bobs of Mozart and Vivaldi playing in my head. (I found that Vivald's "Four Seasons" made macroeconomics much more palatable.)

This musical stupid human trick really takes hold on road trips. When a CD or tape cycles on long distance drives, I'm able to describe in scary detail to my driving companions exactly where we were at when the musical last played -- not just the beginning of the CD, but almost any point in any selection. Ah, if only the brain cells that dedicated themselves to this could be put towards more useful purposes like remembering to tell the hip hubby that we're scheduled to get a haircut so he's at home when it's time to drive cross-island to the appointment! (One of many our complements as a couple is my great memory usually balances out his eh memory skills.)

Of course, like most people, hearing particular songs will immediately transport me back to particular place and time. My first real kiss with a long term-boyfriend was in 1979, parked in my parents driveway, freezing our butts off from the January night air on the bench seat in an old gold Chevy Nova that required a screwdriver to adjust the heat while Elton John's "Tiny Dancer" played on the tinny AM/FM radio.

Meatloaf crooning "Paradise by the Dashboard Light" is a surefire ticket back to the 1988-89 basement of two friends I love only slightly less my hip hubby, Jon and Murph, where we drink cheap beer and dance in a group between the pincushion of a dart board and the graffiti covered bar every time that song was played.

Now picture a community college gymnasium, filled to capacity with motorcycle parts and bikers of every age and occupation, the air thick with the aroma of old motor oil and well-worn leather. That's where I am whenever Steppenwolf's "Born to Be Wild" comes on, watching my great friends Duck and Lee identify a greasy bolt they've dug out from the bottom of a beaten up cardboard box as a necessary part of a carburetor mount for a 1949 Harley Davidson panhead.

Together, all of this music has been the score to a pretty incredible life that's been filled with experiences as varied as the songs to which I've listened. And with any luck, I've only heard the first few selections of what I hope to be a long, interesting second act.

Sunday, June 24, 2007

In Loving Memory of My Mom, My Angel

My Mom died two years ago tonight. She was a big believer in angels, and when she sensed she was going to die from her amyloidosis, she arranged or me to receive a small crystal angel. In the box with this little angel was a poem:

The Angel in this box is the Guardian of your heart. Give Her your worries and fears
so hope and peace can start. Keep this box nearby you and know how much She cares. For when you need love and joy your Angel will be there.

In my eyes and heart, my Mom couldn't have done anything better to try to remind me that just as she did all of those things for me here on earth, she would continue to do them after were we separated. She is, always has been, and always will be my guardian angel.

I miss you, Momma, and I love you so, so much. I'd give anything to be able to give you one more hug and tell you how much you mean to me.

And like with Dad, we'll meet again...I promise you.

The Things We Do For Love

At lunchtime yesterday, my wonderful hip hubby brought a rare treat: a banana in perfection condition, at the perfect moment of ripeness when it's yellow without a single brown spot, and without a single bruise or other imperfection. As so many things have this month (and do all the time), the banana brought up memories of my mom.

When I was growing up, I couldn't even touch a banana once that first brown spot appeared, so my Mom ended up batting cleanup and ate all of the bananas that didn't get consumed before they started their downhill slide. I always thought she liked them like that, just as I was under the impression that she liked the marshmallows that caught on fire while being roasted. It wasn't until I was in my mid-30s that she finally revealed the truth -- that she really was disgusted by those two things but ate them anyway because that's just one of those things people do for each other out of love. That got me reminiscing.

Eating browning bananas and black marshmallows were minor compared to the loving acts my mom performed for my benefit during years and years of medical bs we went through. Most of them were obvious so I knew the lengths she went to on my behalf-- driving me 40 miles round trip five days a week for six weeks, sometimes in blizzard conditions, so I didn't miss any appointments for radiation therapy; walking two miles to her bookstore job every day so I could use our one car to drive 12 miles get to my for-credit co-op job doing the daily bookkeeping for a shoe store at a mall; and taking dictation so I could complete accounting and math homework even though I didn't have any use of my hands during a period of post-surgical home schooling. But there was one thing that she did after that same second astrocytoma surgery in which my mom went to extremes to bring me comforts that I never knew of until decades later.

I was in the neurosurgery ICU for nine days after that surgery. During that time, I was completely paralyzed in both legs and my right arm, and my left arm was so hypersensitive from the inflamed spinal nerves that even a small puff of air felt like a knife being plunged into me. Despite the myriad of problems that still plagued me, I was feeling good enough to be sick enough of the bland, soggy, and usually cold hospital food to be craving pizza from my favorite pizza parlor near home. My dad, who had gone home to get cleaned up and change clothes after spending the night in the ICU waiting room, happily agreed to pick one up on his way back to the hospital that evening. The scent of the pepperoni pizza arrived accompanied with the unmistakable sound of my dad's whistling, something he's done for as long as I can remember. After days of mass-prepared, utterly tasteless institutional meals, and even though my mom had to feed my food of choice a forkful at a time while I was flat on my back while the spine stabilized after the back part of the five vertebra in my neck were removed, the spicy, greasy pizza felt like heaven going in. Unfortunately, it was hell going out.

Even though my taste buds were more than ready for this culinary upgrade, my stomach was not. In a matter of minutes, the intestinal dissatisfaction with what it was offered was made clear as I started to vomit, a dangerous thing to happen to someone who can't turn her head is also forced to remain horizontal. To prevent me from aspirating any of my rejected meal, the doctors informed me they needed to pump my stomach, which is done by inserting a narrow, flexible plastic tube up through a nostril and then down the esophagus into the stomach via the passages through which the sinuses drain. I was terrified of having this done while I was awake and already in severe pain and distress, and begged my mom to hold my right hand while the doctors worked. This meant she would have to remain very close to me, and grip my hand hard enough that I could feel deep pressure, the only sensation left in my paralyzed hand and arm. And true to her word, I could feel my mom's hand and hear her voice from the time they sprayed antistetic on the back of my throat to help calm the gag reflex, through the agony of the tubing making the U-turn in the sinus cavity, and during the minute of frantic, painful swallowing necessary to ease the tubing past the constricted throat muscles.

It was years later that mom confessed to me that the sight of the tubing entering my right nostril had made her terribly ill. But instead of leaving my side to avoid getting sick or passing out, my mom dropped to the floor and, so she wouldn't trip up the doctor and nurse who were also to my right, crawled completely under my hospital bed. Only after she heard the doctor tear off a length of fabric first aid tape to secure the tube in place did she emerge, still clinging tightly to my numb, unmoving hand.

Our family has laughed about this for years, and all of us know that was just a minor display of how much my mom loved me and to what lengths she would go to keep me as happy and comfortable as I could possibly be, regardless of the pain or distress she endured to do so.

I love you, mom, and will always be grateful that the heavens saw fit to entrust me to the care of this amazingly strong and loving woman.

Wednesday, June 20, 2007

How Can You Watch That? (~Shudder~)

You might think that having gone through so many surgeries and medical experiences -- good and bad -- that I'd run screaming from the room when a medical reality shows came on the TV. But strangely enough, it's just the opposite. I can't get enough, from pregnancy and birth shows to ER traumas to plastic surgery -- I'll watch them all.

The shows that fascinate me the most are those dealing with the specific conditions and procedures I've had. There aren't a lot of them out there that match up exactly with my diagnoses because some of the stuff I've dealt with is pretty rare, but there are enough to give me a pretty good third party view of what's going on with my body. In fact, that's why I'm drawn to this type of programming -- to see what was going on to cause me to go through the many, many experiences I've had.

I'm particularly drawn to programs about astrocytomas (which is the type of central nervous system tumor that I've been dealing with for the last 32 years) and other tumors that invade the spinal cord. I'm absolutely fascinated by seeing the spinal cord up close. Watching neurosurgeons try to remove tumors from that critical and oh-so-delicate area of the body always renews my gratitude to and awe of the doctors that performed my three surgeries for the amazing work they did to remove as much tumor as possible while still leaving me much more functional than science predicted I should be. Learning about other people's experiences with astrocytomas of the cervical spinal cord and brain stem on TV is almost the only way to get info about cases other than mine because the chances of surviving the type of grade of tumor I had are frighteningly bad -- when I was first diagnosed, I was told that only 5 percent of people with a Grade III astrocytoma of the spinal cord lived longer than five years. In years of searching, I've only ever met one other living person with a tumor with the same grade and location as mine.

There's only one procedure that I've had that I absolutely cannot bear to watch being performed -- harvesting donor skin for skin grafts. In 1984, I had to have 10 vertebrae in the upper par to my spine fused together to prevent the severe back-to-front curvature of the spine from getting any worse than the 90 plus degrees it had reached -- if it did get any worse, there was a very good chance that it would stretch the tiny bit of remaining spinal cord so far that it would break and leave me paralyzed. Removing the discs between the vertebrae and replacing them with donor bone taken from my pelvis went very well, the incision to get to the back of my spine wouldn't to heal, probably because that patch of skin had already been opened twice before and had endured 6000 rads of radiation that further damaged the skin. To get this area to heal, and stop the dangerous leak of cerebral spinal fluid through the open wound, doctors finally ended up removing the entire trapzius muscle from my left shoulder -- including skin and blood supply -- and moving it over to cover the incision that ran from the base of my skull down the spine to the bottom of my shoulder blades. To cover the donor site, they took a large rectangular skin graft, about 3 inches by 7 inches, from the back of the left thigh. Before I knew how donor skin was collected, I used to jokingly refer to the doctors taking a cheese slicer into the OR with them for the procedure. Turns out the joke was pretty accurate -- the device used to remove a layer of skin just millimeters thick is pretty much an electric cheese slicer. I was so excited the first time I knew I'd see this process as part of a plastic surgery program because it was one of the few surgical techniques I'd been through that I hadn't seen performed. Believe you me, once I saw them fire up their instrument I hit the channel change button just as fast as my thumb could get into position. It's strange, though, because I'm fine with seeing the skin graft get prepped (they crank it through a device that stretches the skin even thinner and perforates it so the graft site can drain properly, otherwise fluid will get trapped underneath and separate the graft from the graft site). I'm even fine with watching the graft get placed onto the donor site. It's just that process of getting the donor skin that gives me a major case of the heebie jeebies. ~shudder shudder shudder~

As with so many other things that I do, I often wonder if others with complicated medical histories share my fascination with watching others go through some of the same things they've experienced, or if being a voyeur into their own medical dramas is just too horrible to imagine. Perhaps on a slow afternoon I'll see what info I can find on the Web. I won't be surprised to learn that I'm not alone in my viewing habits -- the Internet has been a remarkable way for people to discover that they're not nearly as weird as they may think they are.

Wednesday, June 13, 2007

Painful Days

Tomorrow is the two year anniversary of my mom's death, but my horrible grief set in today...not in anticipation of this anniversary, but because of what occurred the day before she died. Mom had been battling a rare blood disorder called amyloidosis, and had been in an out of the hospital several times in the previous months. She hated being there, and (like me) would have to be desperate to agree to be admitted. I am told that she had been battling severe nausea and dehydration for several days. Two days before she died, I got my first hint that mom was doing really bad, and so I emailed my brother to ask him if he thought I should get on a plane and make the 2500 mile trip to be there. Travel for me is difficult because of my medical conditions and physical disabilities (I can't drive, get into my parent's house because of the stairs, perform some acts of personal care without assistance, and my spouse cannot be able to go with me on short notice), and last minute travel is just about impossible due to living on a small Caribbean island.

I heard from my brother the next morning (two years ago today). He told me he didn't feel I needed to get up there. I share a tight wordless connection to my mom, and the strong internal message I was getting is that I needed to go. I cannot possibly express how much I hate myself for listening to him instead of myself.

The next day, my mom was admitted to the hospital. She had passed out while vomiting and hit her head on a metal bowl as she collapsed, and was disoriented and not very responsive. Her ignorant doctor had put on two different blood thinners several months back, which several weeks before her death had caused he to bleed into her abdomen so badly that her backside was solid black and blue from lower back to mid-thigh, and her abdomen was so swollen that she appeared to be five months pregnant. Yet even after she told the doctor about this, and needed to go into the ER to have two units of blood transfused, he put her back on both blood thinners only 10 days after the transfusion. It turns out that she passed out and hit her head, these blood thinners (and her doctor's stupidity) caused he to bleed into her brain in several places.

I didn't learn of her admission to the hospital until about 11 am, and at that time there was still no answer about what her status or prognosis was. About two hours later, I got a call from my brother, who told me of the brain bleeds, and said she was not expected to live through the night. She died at 10:34 pm that night, with my dad in her bed holding her and singing their song to her ("We'll Meet Again") and my brother and his kids at her bedside. I never got to say my good-byes to her while she was still living.

I'm filled with horrible grief over losing her -- she got me through many situations in which I wanted to die when fighting my malignant spinal cord tumor devastated my ability to function and brought on a lifetime of chronic pain. She taught me so much, loved and supported me unconditionally, and gave everything of herself to making sure that I was cared for at the highest standards of care, always had a safe and comfortable place to live as I became more and more disabled, and was my inspiration. And she was so incredibly strong -- a rough, impoverished childhood; giving birth to her first child and buying her first home while her husband was serving in India during World War II; losing a baby boy at birth, her eldest daughter to a drug overdose, and watching her youngest do battle with a malignant tumor that was supposed to be an almost- certain death sentence, but instead caused a lifelong decline into severe disability and chronic pain; suffering through a disloyal spouse and divorce after more than 30 years of marriage (and then marrying him again to live happily for the rest of her life); watching her son do battle in Vietnam and then again at home with the effects that war had on him; and reliving that worrisome experience of loved ones at war when her oldest grandson served in Gulf War I. Only other daughters can understand that respect a daughter has for such a strong, loving, giving, and wise mom, and the huge, permanent hole in your heart that comes when she dies.

In addition to being horribly sad, I'm her death left me other many other negative emotions that linger to this day. I'm still angry with myself for trusting someone else's judgement instead of myself, for never getting the opportunity to talk to her one last time (even if she was unconscious), for not being free to pick up and travel on my own on a minute's notice, and for not being more adamant about getting her to go to an amyloidosis specialty center after speaking to her doctor about my concerns regarding his choice of treatment and getting dismissed by him. I am still livid over her doctor's decision to put an amazing woman who trusted her life to him woman who has already suffered from internal bleeding so badly that she needed transfusions because of the blood loss, and I will never believe anything other than he was the direct cause of her dying before her disease progressed enough to cause organ failure and her death (which was likely months, maybe even years, away). And I'm frustrated that none of my family will even consider the reality that it was poor, substandard care from her doctor that forced us to be without her sooner than her disease did. I'm trying hard to totally forgive myself and my family, but I will never forgive her doctor.

These days around the anniversary date of her death magnify all of these hurtful feelings to a degree that I can barely function. I'm hoping that writing all of this down and putting it out there (symbolically away from me), along with my daily conversations with my mom, will help make this year even slightly less horrific than last year was.

Thanks for listening. My prayers for peace are with all of you who know what this feels like.

Saturday, June 09, 2007

Dad Time

Well, my Dad went back to Michigan on Thursday after spending a little over a week down here with us. Having my Dad here this time was such a good thing for both of us, for quite a few reasons. Not that it isn't always a terrific thing to spend some time with him, but circumstances made this visit important on top of being special.

I was more than a little nervous about the Dad I might see this time since he was just a month out of the operating room after a triple by-pass surgery. It's hard enough to see your parents age naturally -- experiencing the major changes medical conditions may cause can be downright excruciating. All of the verbal health and recovery reports from Dad prior to his visit were glowing, but my Dad has always been one to gloss over the bad stuff in favor of anything positive so I was a tad suspicious that the reality that would walk in the front door might be quite different than the word picture that had been painted for me. I can't put into words the relief I felt from seeing first-hand that if anything, his pre-visit updates were somewhat conservative about how well his 82 year old self was bouncing back. Remember those T-shirts about Nixon that said "Tanned, Rested, and Ready"? That sums up Dad to a T. His scars look years old instead of weeks old, he's lost another 20 pounds, his eyes are sparkling, and he's already complaining about feeling useless when he's here because we won't let him push our manual lawn mower through our hill side back yard in the mid-day tropical sun. Even my brother is blown away by this old guy's ability to heal -- I talked to my Bro a few days after Dad got here and the first thing he said was, "Isn't Dad amazing?" Yes, he really is.

But one of the biggest reasons that getting Dad here with me during this time was unspoken, but understood, between us. It was two years ago this upcoming week that the most wonderful woman either of us have ever known (or will ever know, for that matter) was taken from us. My Mom died from medical malpractice on June 14, 2005. My Dad is coping with the grief much, much better than I ever will -- their song was "We'll Meet Again" and his absolute certainty that they will be together again has enabled him to celebrate all of the wonderful times they shared and what an incredibly wise, impressive, loving woman he was blessed to share his life with for over 60 years. But even though he is doing really well, we both know that the anniversary of her death is a horrible, horrible time filled with memories of just how bad she suffered during her last few weeks, and that having the one other person who really knows how special and unique she was nearby helps to get you through when the tears start to flow (as they're doing right now -- I miss you bad, Mom).

The week couldn't have been better. We didn't do much of anything at all -- Dad rested when he was sleepy, ate when he was hungry (which isn't often at all anymore), christened our long awaited completion of our dining room and new dining room table, and filled his waking hours watching movies and sitting on the porch reading his civil war book and doing Sudokus when we weren't spending time together. We all made our pilgrimage to the casino, the highlight even of each Dad visit. This casino trip was one for the books, too. I dubbed Dad the Kiss of Death (aka KoD) a long time ago because not only did he seem to lose all his money at the casino, just his presence within a 20 foot radius of any member of his family would cause them to start losing, too. But on this trip, Dad became the Anti-KoD and went home about $100 ahead of what he brought and contributed to a late-night rally that enable the hip hubby and I to put a similar amount back into our pockets.

I knew this visit was something truly special when I woke up the day after he left for home. Usually when a house guest leaves, my first feeling on waking the morning after they're gone is that we're finally alone again and have our house back. But this time, my first thought was wondering if Dad was up yet. Instead of feeling like someone extra had gone, it felt like we were one regular short. And that's a pretty cool thing, especially when it comes to parents and their adult children living together.

Dad will be back in the fall, probably right after my mother-in-law visits in late October. I can't wait to see him again -- I'm terribly mindful of the fact that we may not have too many more visits to spend with each other. And I don't intend to miss a single opportunity to be with my Dad, and am so very grateful that we not only have this time but also the financial means and good enough health to make the most of it. Like the Master Card commercial tag line says, priceless.

Friday, June 01, 2007

Reunited...and It Really Does Feel So Good

Wednesday was reunion day for two families, and it just couldn't have been a better day or brought me bigger smiles than the ones that keep sneaking onto my face.

Reunion number one: my Dad came to visit. My Dad, who is 82, wasn't really my tightest parental connection for the longest time -- that bond formed a long, long time ago with my Mom. Dad and I loved each other dearly, but we never really talked about much more than current events in our lives and the world, technology, accounting and auditing (hey, we like it!) and such -- he was the guy who answered the phone, talked with me briefly enough to let me know he loved me and was happy to hear from me before passing the phone to my Mom. But when my Mom died two years ago this June, Dad and I made sure we weren't going to take a minute of our time together for granted. We've managed to see each other at least three times a year since then, and talk on the phone several times each week. And I feel very, very blessed to have this time with him, for it's given us the chance to really get to know each other far beyond our interests. I've learned more about his feelings and experiences during these recent visits together than in all of the previous 42 years, and I've had the most wonderful opportunity to see just how much he has given me as both my biological and emotional father. There just aren't the words anywhere that can do justice to the even deeper bond I feel with him and how much I enjoy our time together.

This visit with Dad is even more special than the others. At the same time I was in the hospital last month doing battle with my infection, my Dad was hospitalized in Michigan. What was supposed to be a routine check-up with his cardiologist ended as a trip directly to the hospital, do not go home and do not stop to get clothes, reading material, or toiletries. An angiogram revealed blockage in three arteries, and on Monday, April 23, he underwent triple by-pass surgery. It was horribly hard to be so far away -- after I was told the Friday before Dad's surgery that I needed to be admitted to a hospital, I debated long and hard about flying to Michigan so I could at least be in the same hospital he was.

Thank god my intuition that this wasn't like my Mom's final days was right on the money. Not only did my Dad have a textbook surgery, he spent only one day in the ICU and recovered so well and quickly that he was released to go home, where he lives on his own, only four days after his four hour operation. (His doctor told him prior to the surgery that he would likely have to spend a week or two in a skilled nursing facility between his release from the hospital and his return to his own home and bed. This incredible recovery continues to amaze my brother and I (who clearly didn't inherit Dad's super power to heal) and his doctors: Dad got the okay to start driving and playing golf again two weeks post-surgery, and at the one month mark, his scar more healed (and straighter) than a similar 23 year old one that runs from my throat to my upper abdomen. Not too damn shabby for an old guy who's diabetic, hypertensive, has glaucoma, smoked two packs a day for more than 20 years, and has been overweight for years (but trimming down nicely now). I am just so proud of him and so very happy to have this time with him after such a horrible scare that I might lose him, too.

The same day Dad arrived we had reunion number 2. After 10 days of trying, we finally caught kitten Omai and were able to reunite her with her brother Kindle and her sister Ono. We had thought that Kindle was the runt of the litter because he was so small compared to Ono, but Omai is even tinier. She's so much smaller than the others that our vet told us he wouldn't spay any kitties that small from here on out -- it took a lot of effort to finally convince him that this really was the sister of the two kittens he took care of with no worries just a week before.

Omai is having a harder time with being separated from Mama than her siblings did. Mama seems to be having a harder time with letting these three go than she did when Clove and Pepper came in last summer. Omai stands in the top kitty bunk and cries out the screen for her Mama -- fortunately, Mama has moved in on the steps we built for pre-capture visits between Omai and her now-indoor littermates. Instead of sleeping in her nest in the bushes or spending her days hunting. Mama now naps on the top step so she's right up near her babies. Daddy Comet came by last night, too, so two families were all together again at the same time last night.

A final kitten update -- I actually got to hold Ono earlier this week! She was doing so well with being stroked that I decided to risk picking her up. After a bit of nervousness, she settled down on my chest and closed her eyes for 20 minutes of cuddling before making one of those adorable kitten stretches -- with the back arched and the little pink tongue curled up as she yawns -- before jumping gracefully back onto her bunk beds. What a difference getting them young makes -- I still can't hold Pepper of Clove, who were several months older than their triplet younger siblings when they were adopted into the Herd.

Here's to families, who should never be taken for granted.