and those caissons go rolling along

My muse wafts in and out of spirit, usually disappearing when times are good -- when the grass is green and hurricane warnings are no where on the horizon. In the past few months I’ve had moments of joy and wisdom I only wish I could write about, but then that would not be therapeutic. It’s the seemingly endless eons of depression and anxiety that needs to be dealt with right here right now and so finally the inspiration is back; times are not so good.

The frame creaked as I pushed the antique brass bed to find him sleeping in his own wetness. He looked at me with forlorn eyes. He mewed sorrowfully, but his tone was more of “I’m tired” rather than “help me Mom, I’m sick.” At least that was my interpretation. Me, Miss Polly Anna, always trying to think something good instead of…

He’s 9 years old and for a cat perhaps a bit over middle age, but certainly not old. Early January he caught a light sneeze & the vet put him on meds for a weepy eye and general funk. Two overnight vet stays (and need I say a lot of money) later, he hasn’t gotten any better but I can now pronounce Arterial Thromboembolic Disease. He’s lost use of his back legs and as of today, he’s lost control of his bodily functions; a sign that we’re not far now hey Jupiter.

As indicators go, Gloria goes in for an urgent blood test tomorrow. She was doing very well there for a while; baking cakes & arranging bride’s bouquets just to get back in the swing of life. We celebrated her birthday early March and we were all so blessed to know she made it to her 65th. We weren’t sure of much last fall, but she fought long and hard in chemotherapy and by all accounts she was in remission. Nana, who turned 84 this year, came back from physical therapy rejuvenated and is back living in the house with Papa. Things seem to be fine and Gloria seems to be getting along okay, even sporting platinum blonde short hair -- look out Annie Lenox! Today she revealed that her platelet numbers are near critical again and that tomorrow she will find out if she needs another transfusion. Yup, that ole litmus test is indicative of acid in the mix. “No more Miami, though,” she said. She has decided to not take on another chemo treatment if the news is bad.

The tinge of another OMG moment rifles thru my core. I can’t believe that after all this she may still loose her battle. A dose of extreme reality takes aim. A shot fired into my heart and no smoking gun to blame. It’s just cancer. It’s just another goddamn case of injustice; like anything good, she has to leave before it’s time to go. Everything is happening so suddenly and so quickly and without warning. We’re all back in defensive mode reloading artillery and repairing ramparts before the next diagnosis. I’ll be with her at the doctor’s office when her numbers are rung up – it truly is amazing what they can count in the blood. Too bad we can’t count on a cure. As for hey Jupiter, my young man may be headed for the great catnip in the sky soon. It’s all so heavy, all so unbearable, but it’s “Over hill over dale we have hit the dusty trail / As our caissons go rolling along…”

Same Room, Different Chair

The boat won’t even start. My car’s fuel pump wails loudly each time she decides to turn over, and God knows when and where she decides to give up the ghost and strands me at the worst possible moment. And my front door has swollen so much that it refuses to shut. I just don’t open it, like the stack of bills piling up on the kitchen counter – don’t open it, and it won’t give you any grief. The front door remains sealed, just like the mail that arrives daily.

The whole world seems out of order as of recent. Well, since the summer at least... ever since Gloria’s diagnosis. It was almost like her AML was a precursor to a series of unfortunate events; a foreshadowing of another blight upon our crops. But this story does not involve locusts or killer bees. The evil do’ers are staring back at us. We have seen the enemy and they are us. But I digress… no one e.v.e.r. sets oneself up for cancer. It just happens.

I find new perspectives on life each time I sit in a different chair, or drive home a different way. It’s like looking at Duval Street from a parade participant rather than a spectator. The Good Captain Tony’s farewell sendoff was yesterday, and in honor of him, his family and my former employee Tony Jr, it was appropriate that I participate in the funeral service and his celebration of life parade down to the saloon. It was only the 3rd time I’d ever been to St Mary’s Star of the Sea Catholic Church. All three times was to say good bye to the human body and say hello to the spirit – a segway between flesh and spirit that happens twice in a lifetime but celebrated and ministered to with formality only once. So I found myself out of my comfort zone and in a new point of view about life. At a funeral no less… but that’s why we do that, right? To remember, laugh, cry, and remember that every heartbeat counts. A sobering look at an old standard.

So yeah, things are different in our brave new world. Folks we knew as “regulars” are gone, business as usual is only a glimmer in the rearview mirror, and the things we counted on become unreliable. Mumma is okay. Not great, not bad, just ya know, okay. Her days seems filled with doctor visits, lab tests, trips to the pharmacy, and the occasional date with a bag of blood platelets. Disease and disappointments have purpose; it brings to the surface the things that matter. It’s a distillation process. And what’s left is the good stuff. If the disease and/or disappointment takes on the guise of Leukemia, or a car accident, or a downturn in business, so be it… what’s left is what’s important. For everyone who gets the message, the distillate is love. Each and every one of you who get a chance to read this, I know you understand. I rather like to think that God has programmed us to “get it” when we most need to hear his calling. So lift up thine eyes and prick up your ears. Tell someone you love them today. And sit in a different chair… both actions summon up the same significance.

sunsets and treasure chests

It’s now Sunday evening and another weekend is sinking like a sunset on the horizon. I’m glad I stayed on land today – a rarity for me on a perfectly gorgeous day off, but a change was long overdue. A routine is good but so is variation; like my head, the garden needed a good weeding. After spending much of the day knee deep in tree limbs, uncut grass and (need I say) little rotting Spanish Lime bombs, I drove 23 miles up the Keys to Mom & Don’s house. She and I watched a late afternoon movie rental and ate ice cream. It was delicious – so was the vanilla Haagen Dass.

Travelling south on US-1 from Cudjoe Key to Key West is mostly west in direction. The firey orange ball dropped about 10 minutes before I left their house so I got a fantastic light show heading home. A lightning storm far away over the open ocean was an added bonus to the drive. As the sky grew heavy with shadows the more pronounced the sun’s afterglow became. Three or four pelicans in formation glided parallel to my little car long enough for the word
“w o w” to escape on exhale.

The sun glides across the sky at the same speed all day long, but you can see it fading fast at the very end. I guess that’s what life’s like at the end, too. We take for granted all the healthy days not knowing how precious every moment of every day is. And then the realization starts to sink in -- this is it and there’s no turning back. And then sometimes we’re lucky enough to get a few days away from the hospital, to sleep in our own bed for a change, to hear rain falling on our back porch and to smell the mangrove blossoms. It’s in these few days that we take inventory of our lives and realize that the possessions of our obsessive nature mean nothing. Zip. Zero. Nada. True value is measured by what’s in our hearts – the treasure in our chests. The love of family, friends and even bystanders is the measure of our wealth, and our cup runnith over.

Thank you again for continued thoughts and prayers. We’re not out of the woods yet – two more chemo treatments to go. Although Gloria is home, she sleeps a lot and Don has taken the ringer off the telephone. You may not be able to talk to her directly, but do leave a message. She hears you.

physical bankruptcy

There comes a time in the life cycle to own up to reality, to take measure of truths & denials, strengths & weaknesses. Options must be assessed. Fight the sickness and return to health, take a business risk and beat the odds or throw in the towel and give up. Sometimes the course of nature prevails and we can accept the end with a sense of accomplishment. Or we can say no, this isn’t the end and remember a line from Robert Frost’s The Road Less Taken; “I have miles to go before I sleep.” Regardless of the choice, a decision has to be made.

Let’s face it; the economy sucks, especially in a small tourist town. I’m up against the wall faced with two options. Should I stay or should I go. The company is (and therefore I am) financially stressed beyond belief. Nonetheless, everyday I wake up to the proverbial carrot dangling on the end of the stick. Come on Kel, go get it, you can do it; look out world, here I come. But I’m tired. Weary of the hamster wheel, I have to make a clear decision one way or another. The moment I want to run away bursting with tears, the phone rings with a new lead. The carrot gets bigger or closer; it’s an illusion either way.

I haven’t seen Mom for 10 days so I rode up on the motorcycle for a quick visit yesterday. My soul needed some chicken soup, and the bike, my old friend, was easier to take than the hot stinky car. Plus I needed to think. Nothing like two lanes of asphalt and two wheels to clear the head. Expecting to see her healthy, almost ready to come home, my heart sunk when I first saw her. She’s so weak, and her hands – oh God, the flesh looks horrible. The pain killers slur her speech. She’s out of breath just going to the bathroom. And yes, the hair is thinning. The upbeat tone of my voice denied the downbeat sputter of my spirit. I’m pretty good at faking it as of late…

The paradigm shifts come like collisions now – they’re hard not to notice. I was washing off the road grime and in the mirror I saw the reflection of her struggle with mine. She’s runnin on empty too. She’s tired too. Mom is emotionally strapped and physically liquidated. We talked about her decision to hang on, to keep her eye on the carrot -- she’s got a future grandbaby to hold. A big lump formed in my throat and I’m sure it crawled up from my stomach, the place where your guts are. The decision to keep the faith, to take the risk to fight the fight is upon us both and although we’re deflated, we’re not defeated. Failure is not an option. I’m rich in ways all the money in the world can’t buy; I still have my Mom.

no news is NOT good news

Hurricane Ike has left a few minor scars around town. It could have been a lot worse but the town was suppose to be up and running by today -- and it's not. No government offices are open, school is still out, and most of us business owners have no reason to go open our storefronts. What is this unexpected interruption? We had a plan. And now another delay.

I haven't spoken with Mom today -- she was asleep when I rang. Don says she's still running a fever and that's not a good thing with a compromised immunity system. So I don't know what's going on and I'm upset that she's still sick yet they want to send her home by the weekend. I'm sorry the news is neutral right now, but at least you know there's nothing to report other than let's hold on until I get a new update.

So much for the best laid plans...

be prepared

That's the adage, right? Today I'm securing the shutters to the house (another trip to the hardware store), putting away the plastic table & chairs, rolling in the seldom used bicycle, and tucking-in tiny plants into beds of bigger botanicals. We do what we need to do when we need to do it. No drama, just action.

The showroom is already prepped -- the staff looked after the business both last night & this morning. Computers & electronics are unplugged and stacked high, tools and customer files are stowed above the last flood line, three feet or higher. Our biggest concern now is looters; if a window blows out, which we confidently do not expect, grubby hands and sticky fingers may help themselves to the TV and stereo inventory. But that's Dave's concern. See, our showroom is made up of three independent businesses -- the TV Center (Dave Yates), Audio Video in Paradise (moi), and the Electronic Clinic (Anthony Taylor). Although our store may appear to be one large company that sells, installs and repairs electronics, the three of us operate under a co-op agreement which is no more than a hand shake... and it works. Our gear is safe; whatever the other guys want to do or not do is their business.

I'm heading to the store for one more pass thru the isles. My list includes cat food, wood screws, bread, cookies and a new pair of work gloves. If all we get is gusty winds and robust rain bands then Dean and I staying put. If the update indicates a closer pass to the Keys then my brother and I are ready to roll. I need not unpack from my last trip.

I hear an airplane over head, probably a turbo prop commercial airliner. That's good -- they're still flying in to get the last visitors out. At least we have time on our side. Others are not so lucky, like those on the fifth floor at Baptist Hospital in Miami. Gloria will be home soon, certainly not as early as this week, but she is in remission. Don told me a story last night over dinner that once again reveals the gentle side of the care she is getting at the hospital. He stepped into the elevator and pressed the number five button. A nurse who does not know him or Gloria slanted her eyes and said, "How it going?" It's not so much what you say but how you communicate; level five is the cancer ward, and there's a mouthful of words that need not be regurgitated when pressing button five. Don replied, "Good news!" She smiled and stepped out onto her floor saying, "then you'll be going home soon."

So if your glass is half empty or half full, just make sure you are prepared. The eye of any hurricane can take aim at you or your family, whether your storm has a name like "Ike" or "Cancer" or "Car Wreck." Take action early and just remember the Scout Motto: be prepared.

the power of no

Toddler: No, you can’t have everything you want. Student: No, that’s not the correct answer. Teenager: No, I don’t want to date you again. Business Woman: No, your price is too high. Rejection in all phases of life and we are told to deal with it, don’t let it get you down, just keep moving forward. The lesson to be learned is to turn my sensitivity off and start using the power of no. During a conversation over a game of chess, our topic was about strategy. The more times you are rejected, the more you want what you can’t have. Huh? Maybe I’ve got a little too much estrogen in my system to understand that motivation. But critics point a finger and claim I do fold easy. Funny, I thought I was a bull dog in my determination – oh wait, that’s already in use by the Republicans concerning another lady, but I won’t go there. No, I won’t.

I angled my bishop across the board to “check” my opponent, and he congratulated me on the smart move. I ate some more French fries and noisily licked my ketchup-stained fingers. Swirling in my self-assurance, I was secretly intoxicated by my own ego. I didn’t see it coming – his lowly little pawn took out my bishop and opened the door for his queen to capture my king. I had no where to go. Check mate in one silly little move! Just when you think you’ve got the tiger by the tail, you find the tiger has you. No, I didn’t win.

Gloria sounded great on the phone again this morning. Her voice has that perkiness that is so her. She understands the power. She told that cancer “NO” and she won.

tropical depression

Tuesday, the 3rd of September, near the peak of Hurricane Season. Mother has been in the hospital since August 15. Nineteen days shut in – not one spent outside in the sunshine and fresh air. Not one day with Lucy on her lap, and all the time wondering when she’ll go home, and for how long. The doctor came by today with some news of the results of her 3rd bone marrow biopsy. Will there be hope or more bad news from South Florida?

I set out Tuesday after Gustov with an extra bag packed, back on the road for a double dip trip to see Gloria & then off to a convention for us in the audio/video business. It’s a chance for us to see interesting gear, learn something new and visit old friends. A once-a-year dip in the pool of neat stuff. As if there isn’t interesting technology at a cancer hospital for this self proclaimed geek, I still wanted to make the trip to Denver. X-ray machines aside, I made my way up to her room that afternoon without incident, albeit we were both a little tired - me from the hot road, her from the hot chemicals. A brief reunion and our vibes were back in sync. Then the update – there’s been a setback.

The white blood cells have not died entirely. Nor has her hair fallen out. Her eyes are brighter, but she hasn’t been as sick as the docs thought she should be. On one hand that’s a good thing, but the point of chemo therapy is to destroy fast growing cells, of which white blast cells are the intended targets. Hair is collateral damage. She shows signs shedding, but like my cats, only a few strands at a time. Enough to know it’s falling out, but not handfuls to get upset over. Was the treatment effective? Why are her hands red? Who is Hanna, Ike and Josephine? Like leftovers dished out by Fay and Gustav, we are now served with less of this and more of that. Remnants of looming darkness and threats of destruction ahead. The forecast was correct but not as corrosive as anticipated.

Wednesday and after several discussions, she reassures Don & me that she’ll be okay during my trip to the Mile High City. The staff of Audio Video in Paradise arrives in the rented car from Key West to pick me up at the main entrance. One last sermon about keeping the faith and the threat of a drill sergeant’s yell about thinking positive and I’m on the way out the door, half smiling and half yearning to be by her side. “Let’s make sure there’s a bar by our gate,” I half joke as we pulled out of one parking lot and into another. The good news is yes there is a decent bar at the Fort Lauderdale airport where the beers are cold and no (thank God) they don’t know my name. My phone rings and its mom – maybe she’s just calling to reassure us to have a good trip. Instead, she has news of the results of her biopsy. Normally it’s very difficult to quiet an open bar. Someone has to yell something inappropriate or in this case, your mother has to pass along news that she’s just been advised by the doctor that her bone marrow is clear.

Nothing can be clearer than to learn that she’ll be coming home in a couple of weeks! We are so happy with the news that she’s on the CLEAR road to recovery! Yessssss… we’ve turned the corner, reached a goal and crossed an intersection. The storm is dissipating.

Gustov report from cayo hueso

Key West is okay. At least that's my perception of the town after Gustov's brush with us. Sand Key light had a reported gust of 74mph, but not sure what the official wind gusts are for the island. So once again, it's comfort food baking in the oven (meatloaf) and both trash barrels are full of branches, seed pods & those lovely, lip-smacking, awfully messy little green bombs. But the sun is shining and Gloria sounds good on the phone. Those prayers and good healing vibes are working... now let's send the same to those on the Gulf coast.

of hard luck and the kindness of strangers

I left her in good hands. Don was there, of course, and Dr. V had just stopped in for a chat. Just give your body some time to regenerate the bone marrow, and we’ll keep an eye on you for any signs of infection. Dr. V reassured us just by his presence. Again, the care at Baptist hospital has been such a surprise. It’s a well oiled machine that is greater than the sum of its individual parts; Gestalt as Berliners would profess. And although she is in the best place, she isn’t in the best of shape.

Her eyelids have a discolored into a sickly reddish brown and her eyes have sunken into their sockets. Her skin is still blotchy from the rash and her chest still has red itchy bumps. We still cry a lot when we look at each other, but our looks are longer, deeper and fulfilling. She’s my mother and I appreciate her more every day even if she looks like an extra on the set of a horror movie… make that a comedy horror flick – she still likes to make us laugh.

Traffic on the Turnpike wasn’t bad at 7pm. Well, not bad for Miami, and well “bad traffic” is a relative term. Bad traffic in Key West is getting stuck behind a Conch Tour Train, creeping along for blocks at a snail’s pace. Miami traffic is just bad all the time. But I love Miami and South Beach and the Art Deco architecture, and the international cultural flair. So let the traffic be the traffic with all the Maseratis and Mercedes and Lamborghinis – what a sight!

I didn’t pretend I was driving one of those exotics, but I did gun it in a no passing zone on Ramrod Key. Twenty-eight miles from home, 10:30pm and all I wanted to do was drive the posted speed limit. Not under, not over, just lemme do 45 mph and lemme get home. Earlier in the evening an aggressive driver got under my skin so I let him pass. He must have failed Courtesy 101 – the horn and middle finger was not very nice. Whatever. So when it was my turn to be a jerk, at least I was graceful in passing the guy in front of me. Kenny Roberts in the corkscrew turn at Laguna Seca, but I was going much slower. It was a beautiful sweeper and no headlights in sight. The problem was I chicaned a double yellow line. No sooner had I actually got up to the posted speed limit that strobe of "stupidom" forced me to the side of US 1.

Ah, the red and blue bubble gum lights flashing to the world “hey look everyone, here’s another idiot.” You know the neon diner sign that reads “Eat At Joes”? Yeah well my sign reads, “I’m a Dumb Ass.” Damn, this is all I need right now; more crap on my plate. My hands were on the steering wheel and all fingers were spread apart as the deputy approached. Try that next time and you’ll get more respect from the officer – or just cry a lot. I did both. Thank goodness my driving record was clean because the deputy let me off without a citation. Her father was going thru cancer treatment as well and she had sympathy for my situation. Maybe she saw herself and felt guilty that she wasn’t by her loved-one’s side, braving thru the nightmare with him. Maybe she had pity on me because she knows how incredibly painful it is to see a parent suffer, or to feel the fear of the unknown. Or perhaps it was just a little fairy dust sprinkled overhead and a chance to cash in my karmic chips for a lucky break. I dunno what or who or why, but the kindness of a stranger overshadowed my misery, and it was yet another lesson presented to me to share with you. The moral of this story is to just take one day at a time; you'll get to where you are suppose to be soon enough.

the end of the beginning

“It is not the end, it’s not the beginning of the end, but it is the end of the beginning.”
Winston Churchill

Day 7 of 7 is now history. Gloria is now off the Idarubicin & Cytarabine and on a standard IV plus antibiotic. Doc came to see her last night after Don & I went back at 10:30pm. We didn’t get to meet with Dr. Fein, and Gloria doesn’t remember much of their conversation but since we haven’t seen him today we plot our course for “steady as she goes.”

The psychologist visited with her and asked her how she felt about the statistical life span after chemo for a person of her age. Three to five years. Thanks for kicking her again with stupid bell curve numbers. How do I feel? Do I have a choice? I sat with her on her bed as she cried, telling us about her conversation. Hey, I yelled. Are you gonna be just another satistic? No she said as she blew her nose. “We’re Conchs and they don't call us fighting Conchs for nuthin'.” I wasn’t’ gentle with my tone…

At around 5pm, Dr. Fein’s Physician’s Assistant knocked. She was very confident with Mom’s condition. Although her white blood cells (WBC) are down at 0.5 (normal is 4.5 to 10, in thousands), they want to see what and how the WBCs are doing – are the overpopulating again? Are they mature and not blast cells? Neupogen injections will stimulate proliferation of WBC and the docs will monitor her counts. Time will tell.

Her reds (blood cells) are in the 9’s and have remained stable which is good. Platelets have come up to 44 and they were at 9 (thousands). Normal is 150 to 350. She’s still at risk of bleeding and not clotting, but the number is an improvement.

Eventually we will have to do another bone marrow biopsy. That is usually done after a second 3-day chemo treatment. That test will tell us more. In the meantime we’re going to keep testing the counts thru daily CBCs. So we’re at the end of the beginning and working towards the beginning of the rest of her life.

on birthday presents and technology

Some of you know today is my birthday. It sucks being here, but it’s also great to spend the day by her side. Well, part of the day was the plan. You see, I had taken Lucy, her yappy Yorkie, out on the boat last Sunday. Armed with my camera, we took a ton of photos to bring back to Mom to fortify her battle defenses. We wanted her to feel good about the things she has and give her strength to go on and come home. Ah, the photos were great! The dogs were running and swimming, the colors were vibrant and I couldn’t wait to hook up the camera to the computer to play a digital slide show of our day.

Wading back to the boat the ocean was still and the air was hot. Gentle surges of salt water lapped at my hips and then a wave came rolling in up to my chest. Before I knew it the digital camera took a dip. I almost heard the electronics ZAP. I know I had lost the camera to the Goddess of the Sea, but the memory card – maybe that will be okay. Blah blah blah, you know how this story will end… the memory card was fried. All those pictures deleted -- like my intentions, shot to hell. I was heartbroken. Mom would never see what a glorious day Lucy had, her first day at sea.

There’s a data recovery company about an hour’s drive from the hospital here in Miami, and I was bound and determined to not give up on the memory card. It was about 10am when I headed out to personally deliver the media card to the experts. In spirit of the good ole college try, one last hurrah, I loaded the card into my laptop. Whirrr, zzziiippp, click, whirrr – my Hewlett Packard was working hard. Could it be? Was something stirring underfoot, or under finger rather? Like a Las Vegas card dealer sliding a deck of cards on a Black Jack table, the pictures splayed on my screen. One by one, dozens of pictures from Sunday’s outing appeared, piling on top of one another. I cried! I really cried tears of joy! My outing to the computer data office was just cancelled.

I couldn’t ask for a better birthday present. How could a.n.y.t.h.i.n.g. be any better than getting back something you thought was gone? A second chance to say I love you. Resurrection and humility. And the providence of my birthday present was the good fortune to give it to Gloria.

Lucy and her new best friend Taz

Lucy Lucindia Lucielle, Gloria's Yorkie

chemo isn’t pretty

Gloria is on fire. She has a 103 degree temperature & we don’t know why. It’s possible an infection has invaded but until the lab reports come back in a couple of days we don’t know what we’re dealing with. The nurses took more blood and have given her a couple of Tylenol. The doctor is due here any minute, but that’s what they said two hours ago. She also has a rash beginning to appear on her chest, shoulder and arms. Her face is blotchy and puffy with redness. She’s cold but her skin is hot to the touch. Things could get ugly from here.

Right now we’ve got welcomed diversion on the TV – a stand up comedy routine. I bought her a small TV with a built in DVD player and signed up for Netflix. They’re sending movies to our hotel so we can bring them to her and keep her mind off the constant clamor of the medical machines. "Beeeeeeep Beeeeeeep" when she bends her arm or "beep beep" when an IV bag runs out, the whir of the air pump inflating and deflating her bed and the blood pressure machine pulsating as it monitors her pulse. The TV was a small investment for a large return.

Tomorrow we look forward to ending the chemo treatment and starting recovery. She’ll be pretty sick thru the weekend, worse than we are now, but they did let us know to expect a dip toward the end. So we’ve hit a little speed bump along the way, but we’ll keep the fighting. It’s all she and you and I and everyone can do -- keep your love alive. Thank you for your thoughts, prayers & the occasional phone calls. Thank you, Thank you, Thank you.

Look for another post on Wednesday, August 27, 2008, no later than 5pm. Until then, I leave you with a quote Don says to her every day: Be patient enough to live one day at a time, let yesterday go and leave tomorrow until it arrives.

cleaning more than the yard

I got my hands dirty this morning. The backyard needed some attention after the storm – the Spanish Lime trees have been busy dropping their little green gems and one might imagine how messy a single one can be much less three very mature trees. After the big blow there was much to clean up. Gardening is a time for reflection, and I imagined the homeowners of years gone by picking up the fallen fruit from the same spot of grass. I dug deep into the soft piles and plucked out every seed, even the rotting ones. A summer version of an Easter egg hunt. The good ones were placed in a paper bag to be shared with neighbors on the lane. I could almost hear the voices of little kids from days gone by calling out “A dime a bushel!” as they wandered the streets & alleyways of Conch Town selling this sweet and sour crop. Mario Sanchez captured that scene so wonderfully in one of his works of art. I looked at my palms, stained by the juice and smiled at the dirt under my fingernails. Yesssssss…

Shortly after a long hot shower, I met a friend at the marina. My boat is not new. A classic vintage from the mid 80’s complete with white and maroon vinyl seats, she still has striking lines. They don’t make them like they used to, and this one’s a keeper. God knows I can’t sell a gas guzzler in today’s market anyway. She’s like an old tennis shoe; you can't part with what’s comfortable. Lucy, Mom’s Yorkshire terrier, met Ashley’s Pomeranian Chihuahua named Taz and with lunch in the cooler, we were underway.

Lucy took to the water with no fear. Taz loves to swim so Lucy had to prove she was a better paddler than her new boyfriend. She headed right for shore. A competitive trait of alpha females is to either lead or get out of the way – we don’t follow very well. Laughing, Ash & I let the dogs have their fun.

Along our walk at Woman Key, we came upon a baby bird struggling in a hot and shallow tidal pool. Poor thing, it was exhausted and we thought all it needed some TLC. But, we also thought that of Mother, too. I gently held the little bird in my hand and waded back to the boat. A Florida Fish & Wildlife patrol was in the area & as they approached they scolded us for having the dogs on the beach. But our concern was the little guy now cupped in Ash’s hands. The officers were confident the baby would recover on its own and took it back to the island to a nesting area off limits to people. They believe in letting nature take care of its own – leave it in its natural environment and let the universe do its thing. I now second guess my intentions with that little bird; were we wrong to help? Would it survive the stress of being handled by human hands? Did we violate the Prime Directive? Should we inject drugs into cancer patients to kill what’s killing them? It’s in our nature to help the helpless. Like the way we reached out to rescue that little bird and set it free, Mother will fly again.

meanwhile back in the Keys…

Hi! How are you? How’s Gloria? Ugh… press rewind and repeat. Gloria is on day 4 of 7 and she’s (dramatic pause, look them in the eye and continue)… she’s wearing an armor of wit. Her laughs are long and heartfelt and her one-liners wickedly delicious. No cracks in those defending walls.

A day back in town and the boys have the work schedule well taken care of. Holly is a gem – she’s learning how I think & what needs to be done to keep the store running. I’ve taught her well. My goal is to work myself out of a job in that the company runs smoothly without me, but we’re not there yet. I aspire to be captain of the Starship Enterprise – on the bridge only when required but always in the loop. I’m most like Number One though, the hands on operation guy always everywhere all the time. A distinctive quality, but my Achilles’ heel. When will I learn blue isn’t red? When will I allow myself to be Picard and rise above the daily “must do this, gotta do that” mentality? Letting go is the hardest part, and I’m just not there yet; on many levels.

Papa is a grumpy old man – an 86 year old example of not wanting to accept change in anything. I’m stumped as to the rhyme or reason he and I click, but we do and so it is. I sat down with him Friday to tell him the bad news. Dreadfully, I pulled up a chair and held his hand. The hot wind blew strongly thru the only open window and his long graying hair whisked forward. Tears rolled as I struggled with the lump in my throat and then most amazing thing happened. He reached across the table and with the napkin in his hand he dabbed my cheek, wiping dry the visible anguish. Woah! I even said it aloud because it was powerfully delicate moment between a grand dad & his first born grand daughter. How lucky am I to have had that moment? How could a curmudgeon render such compassion? How many licks does it take to get to the center of a Tootsie Roll Tootsie Pop? If you are comfortable with the unanswerable in this world then be still with it and let it go… It’s okay to not know.

Bahia Honda Key, Spring 2008

Mom & me, the two guajiras from Key West, eating summer mangos

Mom & Dean at her 64th birthday party March, 2008

lights, camera and... drip!

Chemo started today. Dr. Fein visited us last night to confirm the diagnosis. Has the jury reached a verdict? Yes your honor we have. The light changed as the sun set behind rain clouds and the room turned dark. We find the patient does have AML leukemia. White blood cells are not growing the way they should and are overpopulating, crowding out the other components of the blood including red blood cells and platelets. Ladies and gentlemen, thank you for your service. The court sentences the cancer to death. WHAM! The pounding sound of the gavel striking the judge’s bench as the doctor spoke. The sentence to be served shall be a month in the hospital hooked up to a bag of drugs to basically kill you, but we’ll keep you alive until the bastard cells are dead. And if necessary, we’ll go back Jack and do it again.

I went to buy her a crosstitch something or another today. She needs to keep busy for the next four weeks, and needlework holds her attention. I looked at all the patterns and had a hard time deciding which one would be best. I was a fish out of water in a craft store – Mary Tyler More in the opening credits rolling her eyes tossing groceries in her basket. Then it hit me; I was shopping for my mother’s life. The kit I selected included some embroidery thread, but I splurged and bought some fancy marbled cords. One packet had yellows and golds, another had aquas and greens. I liked the pallet – it reminded me of the colors of the Keys. The thought was to replace the standard threads with the extraordinary ones making the design on the baby’s bib come alive! In facing fear, I would find courage in the infant’s aisle at Target.

Today is uh, umm… Thursday I think. That was yesterday, and I find myself in the garden again. Fay is no longer here but the missing umbrellas are a silent reminder of what was done earlier this week to prepare. Like the wig that’s still in the bag hiding under the sink in her room -- a symbol of getting ready for the worst. But we’re not there yet. Instead, she’s got everyone laughing at her wit, joking about strip dancing with the IV pole. Yup, that’s my mom. A few more wrinkles, a few less fears, and a baby’s bib to finish. Yeah, today is day 2 of 7.

I’m probably going home for the weekend to recharge my batteries and will return next week for the final days of chemo. Doc says those are the worst. Like the battery icon in the lower right corner of my laptop, I’m half-full. I’m now a caregiver and am very aware of the responsibilities to keep, but not so much to her. A direct connection to warm sunshine on a shallow sandy beach is my docking station as it always has been. Hard wired to the power supply. Shortly I will take my leave of the mainland and skim down US 1. The drive is so beautiful -- island hopping until I’m home at last – and the ghosts of generations past will be on board my barque and it will be okay.

enlightenment in the least expected places

She wore a bursa, but the kind that only covers her hair. Long sleeves, long pants and latex gloves rounded out her uniform. I watched her push a cleaning cart not realizing I was staring – I was more or less in a numb zone. She smiled politely as she passed. She looked normal, nothing about her features led me to believe she was… well, you know, one of “them.” Yes I just said it, go ahead and gasp. Whatever. She must just wear that as part of being sterile and the cleaning chemicals might affect her skin. Or maybe she too has lost her hair and chooses to carefully conceal her cancer. We learned there are several workers in the hospital with their own battle scars who inspire us to take up the fight. But the cleaning lady – what’s up with her?

I whispered to mother when she rolled up to the room next door, and raised my eyebrows when she maneuvered into ours. Love the smell of bleach, Mom & I do. It screams “bathroom’s clean!” and “sheets are washed!” But she sprayed a different cleaner on counter and cabinets of the small wedge-shaped room. Not what we were expecting. I eyed Mother with a look of “watch this…” and I cleared my throat.

“May I engage you in conversation?” I asked. She stopped and looked at all of us and said, “why yes, of course.” I began talking to the cleaning lady, the gatekeeper of bad germs. She wore it because yes, she is a Muslim. In a *Baptist* hospital? “Isn’t that, well, uh… a conflict?” Go ahead, gasp again. She looked like a nun actually. A vision of Mary with a toilet brush in her hand. She even smiled like Mary – her eyes shone knowingly. “All religions have good in them so there is no conflict. If you take all the good in all religions we’re all the same – there is really only one God.” Emphasizing that this was her own personal belief, she punctuated her explanation with “you don’t have to subscribe to believe.” We broke into astonished applause!

Everyone here at Baptist Hospital in Kendall is absolutely amazingly nice. I can’t say enough about the level of care, kindness and genuine consideration that has been extended to Mother, Don & me. The information guy at the front desk took it upon himself to run out in the rain to the newspaper box for us. The cafeteria lady helped me with my tray, the nurse held the elevator for us just because, and the doctor’s bedside manner is not based in his own ego. For goodness sake, the cleaning lady lectures like a Buddhist monk! Not what we expected. You never make diamonds if first you don’t start with a chunk of coal which ironically enough you end up finding in the least likely place.

an explanation is due

You are probably wondering by now why the name of this blog is odd. Well there’s a wonderful lesson in this story. When we (as a family) were diagnosed with this awful news I wanted to make a statement. Cancer patients don’t have options about loosing their hair during treatment, but I do have a choice, and I wanted to let Gloria know I was right there with her no matter what. The $10-haircut-no-appointment-necessary-salon was across the parking lot and sure as hell I was making a bee-line to go pull a Britney. “Make me like Sinead,” I wanted to say as I flung open the beauty parlor doors – with all the vibrato of a cowboy movie actor entering a Western saloon, thumbs tucked in a leather six-shooter holster.

I’m a spontaneous person and I like surprises. Well, good ones at least. When I make a decision I sink my teeth in and don’t let go until it’s done. Never ever ever ever ever E.V.E.R. give up is my motto… for better or worse I guess. The yin of that yang is that I also consult, investigate, shop around and call a girlfriend or two. True to form, I sent an email to a couple of lovely dears telling them what I was about to do and would they like to join me at SuperCuts for a ceremonious shave. It was a little like John Wayne asking the pretty little ladies to join him in a round of whisky. Moments later thanks to the magic of computers Beth and Ashley responded suggesting I hold that thought. Huh? But it’s a great idea I argued. It’s like willingly jumping into a cold lake at the very moment your mother gets shoved in by some crazy messed up medical condition.

If it’s about making your mom feel supported ask yourself if it’s in her language or yours. Is it going to really make "her" feel supported? When I asked you how she might feel you said you didn’t care. You were going to do what you wanted. So is it for you or is it for her? It doesn’t matter who it is for or what you do, but my suggestion, as a friend, is don’t do it for one and say it’s for the other. Either way you’re my friend and you’re still fun to hang with whether or not you’re bald.

Love You,
Ash

The duel was over. I was challenged in broad daylight & the sheriff in town settled the gunfight between my actions and my intentions.

And again, true to form, I texted another girlfriend commenting that I was starting a blog about mother’s health issue and needed to name it. The birthing process I can’t talk about – at least the human one… at least not now – but I do know that the first step is death and the second is rebirth. Spiritual growth calls for a leap of faith, and the letting go is the scariest. You can beat those wings as much as you want, but unless you heart is in the right place that bird won’t fly. However, when that special moment arrives, when the authentic intersects the divine, the world is right. That’s birth no matter how you describe it; rebirth as in religion, paradigm shift in psychology, or finding your soul mate in a relationship. It’s saying “yesssss” out loud. Thus I end my post with the explanation of how Paige pointed out the obvious; I almost shaved my head.

hurry up and wait

Dr. Fein took another bone marrow sample from her left hip early this morning. He told us the procedure would be at 7am. Don & I were up early again, so we left our hotel at 6am. The ride in an elevator in a hospital is a lot like meeting members of your family you’ve never met… there’s a commonality amongst strangers. The mother of two young children leaned unapologetically with a thud against the wall of the lift. Her brow furrowed and her eyelids closed with a strain. It was one of those openly private moments were you are compelled but reluctant to look, but you do anyway. The kids knew – their instincts told them to be quiet and squeeze their mother’s hand. It was emotional to watch, feeling exactly what it feels like to be in her shoes. The sliding doors opened and I imagined an image of God’s hands opening and the people stepping out and into his sanctuary.

Glad we left the hotel early, because the next stop was our floor & we met Dr. Fein in the hallway. Timing is everything. He was just about to perform the procedure and it was only 6:15am. He was ahead of schedule. The echo cardiogram of her heart was on Saturday, and with the new tissue sample today we should have a final forecast by this afternoon. East coast or West coast? Where will Fay hit? When will Gloria’s treatment start? How much damage should we expect? Wind or flood? Vomiting or hair loss? At least with a start there is an end.

a slight change in latitude, a slight change in attitude

Fay is predicted to track a bit to the left of the Keys hopefully sparing Key West a direct hit. It is predicted to build to a Category 1 hurricane by the time it escapes Cuba and steams across the Gulfstream. Somehow, the news of the strengthening offsets the news of the western drift. Alex, I’ll take “Westward Ho” for $100 – but this isn’t Jeopardy.

I choose to remain at my home during the unprecedented hurricane season of ’05. Even as Wilma’s witching winds blew I was glad I stayed. There was a sense of community; a collective consciousness amongst us islanders that we were all in this together. Here we go again weathering two storms– Fay and Gloria. Let’s call them The Twin Furies. And although I’m not there to help my neighbors, and drink with my friends, the sense of togetherness transcends the distance.

The Calm Before the Storm(s)

Thunder & lightening startled us awake. I hear the click of the TV being turned on, and I turn to make brief eye contact. I see Don’s expression as we rub the sleep out of our eyes. In the bluish glow of the TV, the weatherman gives us the 5am update on Tropical Storm Fay. Don looks tired but that’s only because it’s early…

It’s too early for most of us, & for Mom it’s both early and late. It’s late for her to hold her first grandbaby. She’s 64 for God’s sake – she should be an expectant great-grandmother by now. At least that’s the way I’ve always heard it should be. And I’m still stuck in neutral, gunnin’ the engine knowing damn well all I have to do is shift into gear. Guess it’s late for me, too, as I approach my 43rd birthday a week from Wednesday, but I prefer to think of my motherhood just being behind schedule. More on this subject later.

There’s something soothing about Sunday mornings, & light traffic made our drive to the hospital easy. Well “easier” at least; there is no big red easy button to press like in the commercial on TV. We politely knocked and pushed on her door announcing our arrival in a cheerful, albeit hushed voice. She looked sick, and for the first time I felt scared. I was loosing emotional ground and all the clawing in the world wasn’t going to keep me “Queen of the Be-Strong-Kelly Hill”. In the cafeteria I teared up but Don caught me. “Don’t go borrowing trouble. She’ll be alright.” And it’s too early to tell where the storm named Fay will go, or what she’ll do. No, we don’t know how Gloria will respond to treatment. No, we don’t know where Fay will hit. All we can do is prepare for the worst and pray for the best.

It’s now 11:30 and I find myself isolated in a lush garden within the hospital campus. The weather here is rather lovely, not too hot or cold, some clouds with mostly glorious sunshine. There are several pretty wrought iron tables & chairs decorated with pineapples – the icon of hospitality. But it’s just me, my laptop and my iTunes sharing everything and nothing. Clickty clack at my finger tips and thump-thump of toe tapping the base of the umbrella table. Soon I will go back to the decidedly comfortable hospital room to kiss her and hug Don. She wants me to go to the mall to find a wig for her. She keeps joking about becoming a redhead. We looked at the Paula Young website last night. I now have my marching orders to get her something as close to the “Abbey” look as possible. Am I looking for her lost youth? Am I supplying her with a narcotic to dull the pain of reality? Or are we simply preparing – doing what you’re suppose to do knowing there’s now an official forecast, with the eye of the storm tracking right for your home?

Mrs. Wilson, you have acute leukemia

You could hear a pin drop. The doctor held my stare from across the small table and then looked at Mom. Don didn’t look at Gloria. I didn’t look at either one. We let the blood specialist speak, explaining his findings and subsequent results of recommended treatment. “I’m sorry to be blunt, but this is a diagnosis I cannot fool around with.” The air in the room followed Dr. V as he closed the door behind him, giving us a few minutes together. I inhaled slowly, smothering the urge to hold my breath.

The problem with finally knowing something is that we didn’t know everything. Even today, as we make it past the first 24 hour mark in the hospital there are still more tests, more evidence to prove and less chances that it’s simply a case of exhaustion. Dr. VenKatappa’s colleague Dr. Fein is a leukemia specialist at Baptist Hospital here in Miami, and he set us at ease during our first meeting. With great hesitancy he asked Mom for another (very painful) bone marrow biopsy. His sales pitch was that he thinks her condition might be a variant called APL which is easier to treat, but he needs to run more tests to support his theory.

Acute myeloid leukemia (AML), also known as acute myelogenous leukemia, is a cancer of the myeloid line of white blood cells, characterized by the rapid proliferation of abnormal cells which accumulate in the bone marrow and interfere with the production of normal blood cells. AML is the most common acute leukemia affecting adults, and its incidence increases with age. Although AML is a relatively rare disease, accounting for approximately 1.2% of cancer deaths in the United States,[1] its incidence is expected to increase as the population ages.

The symptoms of AML are caused by replacement of normal bone marrow with leukemic cells, resulting in a drop in red blood cells, platelets, and normal white blood cells. These symptoms include fatigue, shortness of breath, easy bruising and bleeding, and increased risk of infection.
Although several risk factors for AML have been identified, the specific cause of AML remains unclear. As an acute leukemia, AML progresses rapidly and is typically fatal within weeks or months if left untreated.

Acute myeloid leukemia is a potentially curable disease; but only a minority of patients are cured with current therapy. AML is treated initially with chemotherapy aimed at inducing a remission; some patients may go on to receive a hematopoietic stem cell transplant.

Dr. Fein will continue his research to confirm the diagnosis and hopefully begin her 7 day treatment on Monday. Measure twice, cut once. If she responds to the chemotherapy the bone marrow tissue will grow back and the condition will go into remission. She will need round the clock care for three weeks after, so our two week stay just doubled.

Gloria is in good health considering, so the doctor feels comfortable with her state. Progress is being made even as the body slowly regresses. The wings of spiritual understanding are spread wide and we are elevated higher when the winds pick up. So bring on the tropical storm – this old Conch family is weathered but not weary.