Expecto Patronum!

Posted by Richard on July 10, 2012

Almost Beard2

I’m a Drama Queen. An Academy Award-winning Drama Queen.

When something is bothering me, and I can’t figure out what that something might be, I just throw everything into a pot and stir it all up.

I deliberately make everything as bad as it possibly can be. I call forth the Dementors from Azkaban. I almost beg the misery.

Invariably, the process shakes me for a day, maybe two. That day was my last post.

I was so discouraged. I think I scared the shit out of a few people. I am sorrry.

But I know how I work. Once I face the problems, once I face the worst-case scenarios, I start sifting through the emotional wreckage. And I deal.

A Sleek Hunter

Like Harry Potter, I have a patronus. Mine is exotic — a bright silver tiger, a sleek hunter, if you’ll allow me that conceit. When he pads through my life, I can literally feel my mood shift. My own strength rises, subtle but indomitable.

So I have a few challenges. Who doesn’t? I don’t need all my dreams to come true. I just need to have fewer nightmares.

First, I’ll admit the obvious. Less than 3 months after neurosurgery, Wall-E, my tumor is back, and I’m likely facing another operation. I had hoped for better.

Last time, I was not without fear. I had moments of panic that hit me like a punch to the solar plexus, when mindfulness couldn’t deflect the dread. When complications threatened, and my sodium levels plummeted so that I could barely lift my head to vomit, I might not have been so close to death, but I thought it preferable.

So I don’t want another operation this soon. But if I have to do it again, I can. I can face the panic and any pain. One sad truth is that I have lived through far, far worse than neurosurgery and neurosurgical complications.

And the worst didn’t happen last time. Far from it. I’m still alive, I can still see, and I can smell, though perhaps not as well as before. The tumor is much smaller, and should be easier to remove. My skull and sinuses are healing well.

So I will be fine. And I have a few months to rest and heal before climbing back on the treadmill.

Don’t Sweat the Small Stuff (And It’s All Small Stuff)

I also felt lonely last week. My family is consumed by my sister’s illness, and while no one likes to feel invisible, that is how it should be. She is suffering so much. I wish I could do more to help her, but I first have to help myself.

My most fervent hope was that surgery would leave me well enough to return to karate, and I feel that loss keenly. Karate is how I cope. Though it sounds daft, the dojo is my monastery, the place when I feed my spirituality, and gain a sense of who I am. There, I find honor and friendship.

But if I am to be denied the comforts of old, the modern age has opened a new world of camaraderie, and I am so grateful. I was wrong to suggest that I am isolated because I really do not feel alone, even if this battle is mine to win or lose. I have listened to encouraging words from cousins and old classmates.  I have heard from online friends far and wide, friends held dear to my heart though we’ve never even broken bread together, friends who matter to me though I do not know, with few exceptions, if their voices are as sweet as their sentiments.

I am a lucky man. And if our garden doesn’t get weeded, nor our office and bedroom painted, who the fuck cares. We usually have enough food to eat, and we always have a roof over our head.

Seventh Time is a Charm

As for the rest… If I’m not happy with my life, I can bloody well change it. I am stuck, at 53, in job that holds no future for me. But I have proved that I can hold down a job even when I’m deathly ill, and that I can even become a valued employee. Someone else will hire me.

I have also written a book that is better now, in its seventh revision, than ever. I haven’t exhausted my list of agents who accept young adult queries, and I love the thrill of submission. And, if Secrets of the Hotel Maisonneuve never sees the light of day, I will still be proud of it. It’s smart and well-written.

I like it so much that I’ve started writing again. On my second novel.

Which brings me to the crux, to what really bothers me. I have to feel worse before I can feel better. I thought I was past having to prove myself, but I have another battle to fight.

As a research patient, I was given exemplary care. As one of the multitude, I’m raging against the machine. My doctors—I sit at the fulcrum of three medical specialties—can’t quite understand why I seem to lack hormone function, even though it’s not uncommon for people who undergo neuro-endocrine surgery.

I thought I had a good relationship with my doctors. But they doubt my Whitman’s sampler of symptoms just as the endocrinologist who screwed up the last 15 years of my life doubted me. At my last appointment, no one asked how I felt.

I had expected better. It’s hard on my head and bothers me more than it should. I know that. But maybe that feeling will change.

The patronus charm begins with hope. I will think good, kind thoughts. Know, dear reader, that hope begins here, with you, the people who read my blog.

I’m sorry if I gave you reason to think otherwise.

Posted in Life, Pity Party, Wall-E—The Neuroendocrine Tumor | 3 Comments

You Win Some, You Lose Some

Posted by Richard on July 4, 2012

Post post2

My mother delighted in telling everyone that I was a know-it-all — a highly-educated pain in the ass. In the complicated way that families are, she seemed so gleeful when circumstances knocked me on my keester.

I wonder what she would say to me now that I’ve learned that I was right, and a legion of brilliant doctors were wrong?

I certainly take no solace in the win.

For years, I have asked every specialist who would see me if my pituitary macroadenoma might be causing the migraines that afflicted almost every waking hour. As irony would have it, the only doctor who told me that salvation might come in the OR was the neurologist I saw just a few weeks before my scheduled neurosurgery.

So I’m happy to tell you that this one guy knew his shit. The surgery was a success.

The Good News

I have been suffering far fewer migraines over the last two months, maybe seven or eight in total. Compare that with 20-25 per month over the last five years — which itself is a vast improvement over the daily migraines I endured for 14 years before that.

The good news continues. The relentless facial and sinus pain is gone, and I feel less fuzzy-headed than I have in nearly two decades.

As victories go, it’s so poignant and so bittersweet. I now have a fourth chance to do something with my wasted life.

I understand that it might not be my fault, that circumstances have been uncommonly cruel. But I’d be lying if I said felt like anything other than a failure. And so I look back now at 20 lost years. At nearly 7,000 soul-destroying migraines. At a life so lost and hopeless that I planned to end it a dozen times.

I don’t know what you see here, but the man I know feels broken and isolated. I rage because my life has been such a fucking waste.

The Not-So-Good News

But I also know that there is some strength in me yet. That I will twist and turn in this dark tunnel until I can see a hint of light overhead. That I will always reach, perhaps out of habit, for some root to grasp so I can pull myself from the mire.

I need this strong side again because the neurosurgery was a failure.

I learned this week that a slip of tumor remains, snug against my pituitary gland. I have to believe it’s growing because they would have noticed something this big during my operation in April.

My silence on Telling Stories is the surest sign that I’ve been struggling, slipping towards another one of these events. I have largely lost all hormone function, and the symptoms have been deeper and more profound than I expected. I have been too tired to get out of bed, but too sore to stay in it. My joints and muscles have been too weak to walk up a flight of stairs, too sore to pour water from a jug, too shaky to hold my coffee mug between sips. I have adrenal insufficiency, anemia, and diabetes insipidus.

I’m losing. The house has missed its spring clean up, the garden is thick with grass and weeds, and I struggle heroically through each and every work day. Kristina is pulling extra hours trying to make up the slack that comes when I can’t nail down a full shift.

If I look to the horizon, I won’t see the cavalry. My blood work has confounded the specialists, so I will be spending several days this summer in the hospital undergoing intensive tests to determine just what I need, and what I can do with out. I want them to give me everything, no questions asked. But it’s not like it was when I was research patient. I’m just one among many in an overburdened department. They’ll fit me in when they can.

I know that patience is wisdom’s perfect companion. It seems I need both, but they have so far eluded me.

Practice What You Write?

About four months ago, just before the surgery, I was in such bad way that I couldn’t make a circuit of the Seaport Farmers’ Market without resting on a bench. After a time, an older man joined me.

After a few minutes trickled by companionably, I glanced at him. Amazing. It was my old endocrinologist, the doctor who left me dangling from his rope of godhood when I first became seriously ill. The doctor who, if memory serves, told me that there was nothing wrong with me that dropping 20 pounds wouldn’t solve. Who refused to run blood tests to confirm his pronouncements from the pulpit.

I flushed, emotions surged, the world grew small and intimate. I believe that he knew who I was, and that he knew he had screwed me over.

I wrote a whole novel about the power of forgiveness, but found not a trace of it in my heart on that day.

I stood up and walked away, my legs shaking—whether with weakness or anger, I could not tell.

Posted in Life, Pity Party, Wall-E—The Neuroendocrine Tumor | 4 Comments

Top 10 Reasons to Think You Might Have Diabetes Insipidus

Posted by Richard on April 29, 2012

4 up

10. You don’t bother putting the toilet seat down after peeing because you’re certain you’ll be the next person using it.

9. You fill up a blue bag with recyclables from the backseat of your car.

8. You plan every trip by noting the destination’s access to clean public washrooms. If there isn’t a place to pee nearby, you don’t go. The corrollary: When choosing a movie at the multiplex, the movie’s Rotten Tomato ranking is less important than the film’s proximity to the restrooms.

7. When the attendant gives you one of those enormous 64 oz glasses of pop (soda), you know that it won’t be nearly enough, so you get one for your partner, and leave it by your feet.

6. You’re on a first name basis with the young woman who lets you back into the theatre. When you leave, she asks you if you enjoyed the movie, and you realize you don’t have a clue what it was about.

5. Over two hours, you visit the bathroom five times more often than the combined total of your wife’s eight-member book club.

4. You dream about being a cocker spaniel in a lamp post factory.

3. You find your former wine-writer self creating tasting notes for soft drinks, so you start a new blog with a beer-loving friend called Hops and Pops.

2. You pee outdoors so often it’s like you’re five years old again.

1. You start thinking about your time in the hospital with a catheter as the “good old days.”

Posted in Humor, Life, Wall-E—The Neuroendocrine Tumor | 12 Comments

21 Days in April

Posted by Richard on April 28, 2012

Hospital

It’s frightfully amusing to watch people checking me out — and by that, I mean the folks who know that I’ve just had major neurosurgery to remove a huge pituitary tumor. They invariably search my face for scars, for swollen bits, for black eyes.

Anything that might suggest trauma.

Yet I look just the same as I did three weeks ago. Truth to tell, I looked fine one day after surgery.

Thank God for endoscopy. Twenty years ago, this operation would have involved cutting away chunks of my forehead or temple to get to Wall-E, the pesky bugger who came for a visit in the early 1990s and never left. Today, neurosurgeons just widen and scrape each patient’s sinuses, and then cut the important holes internally. So just 60 minutes after my five-hour operation, I looked fine, apart from one seriously bloody nose and, under my hair, two nasty goose egg wounds inflicted by the vice that held my head tightly during the procedure.

Otherwise, I looked unscathed.

An Odd Week

The irony is that even though I look pretty good, I haven’t had an easy time of it. I spent four days in the neurosurgery step-down unit and, apart from one brave and seriously-ill grandmother with a shunt draining blood from her cranium, my roommates changed several times. My cronies were men, shaved bald, with Frankenstein stitches from having half their skulls cut away, yet they were shuffled off to ward beds after 18 hours, and released a few days later. The guy who looked like he was still waiting for his day in the OR had to be kept under close observation.

It was an odd week, by any measure. I had but 12 hours notice that I’d be going under the knife. Thursday morning was frantic, as I called in sick to work, sent off a few messages to friends, and then rushed out to fill the car with gas, to purchase a few prescriptions I’d need in the hospital, and to buy a new robe (at half price!) because my old one, circa 1981, was disintegrating.

I arrived at the Halifax Infirmary at 11:30, was processed over the next hour (they lost my file temporarily), and left to wait in the holding area, wearing a sexy johnny shirt and a warm blanket. I have great legs. I could tell all the nurses were checking me out.*

I spoke quietly with Kristina and with my sister when she arrived. Although I hadn’t really slept the night before, I wasn’t nervous, and my blood pressure was only slightly elevated. The truth was that I’ve been so sick over the last eight months, I just wanted to put the bloody thing behind me.

The Long, Dark Tunnel

The neurosurgery operating room is seriously impressive — it’s huge and crammed with a CT scanner and rows of electronics. When I climbed up on the table, a dozen doctors and nurses swarmed, and we chatted warmly for five minutes. Then I felt the cool drip of anesthetic… and oblivion.

After a time, I entered a long, dark tunnel, though mine was decidedly prosaic. I came back to the land of a living by walking down a dimly lit corridor lined with Smart Technology projectors and whiteboards.

I saw the face of Dr. Clarke. He told me the surgery went well. Then I saw my sisters, Lorraine and Linda, and Kristina. I knew pain, could feel where parts of me had been carved away, but the pain was bearable. I learned that my tumor was massive, much bigger than expected. Dr. Massoud, the ENT specialist who assisted on my surgery, told me that it went everywhere and, if it had grown upwards as most of these do, I wouldn’t be posting to my blog now because I would be blind or dead.

The good news is that they successfully removed all the tumor they could see, though it is expected to return. The bad news is that the tumor had completely encased my delicate pituitary gland, and the surgery proved too traumatic for my little buddy.

One Lost Little Buddy

At the moment, my pituitary has decided he needs to take some time off. He’s headed south for a little R&R at an all-inclusive resort in the Dominican Republic. Odds are about 50/50 that he will spend the rest of its his days there, and I’ll have to do with out him.

Despite his pint size, the pituitary is the lord of all glands, so this leaves me in a bit of a pickle: My body isn’t producing hormones, so I must rely on pills and injections to my body functioning. With some, missing a dose here and there is no biggie. Skipping hydrocortisone, however, would quickly prove lethal.

Interesting, then, that I miss vasopressin the most. It’s the hormone that regulates our kidneys, so mine have become marathon runners. They never stop pumping. I drink, I pee. I don’t drink, I pee. I am forever chasing my thirst, always feeling like I’ve just crossed Death Valley with a leaky water bottle.

DI Infraction

The condition is called diabetes insipidis, though it has nothing in common with the better-know diabetes mellitus. In the hospital, despite IV lines and and an attempt to drown myself by drinking a litre of water an hour, I was often too parched to sleep. As a result, I felt progressively worse every day after my surgery, and my doctors — I’m at the fulcrum of three medical specialties — told me to put my feet up and stay awhile.

They administered vasopressin to turn off my kidneys at regular intervals, but overshot the mark. Suddenly, my urine became too concentrated, and sodium poured out of my body in a torrent. I felt like a ton of bricks had fallen on me, suffered excruciating migraines that I could not control, and threw up painfully.

It was pretty fucking horrible. I had a brief, passionate love affair with Zofran. Eventually, through saline drips, salt tablets, and fluid restrictions, I remembered what it was to be human again.

I was released, eight days after surgery, feeling much the worst for wear, and mostly impressed by the care I had received. I continue to suffer the vagaries of diabetes insipidus, and the migraines have been constant and brutal since surgery, which doesn’t surprise me. Every nerve in my face feels inflamed from Wall-E’s extraction, so it’s painfully easy to fall into a two-sided migraine, the worst I suffer.

I need to heal.

But it isn’t quite my time. Bad karma, I guess. Two weeks after surgery, I had stitches and a silicon shunt removed from my sinuses, along with a plug of blood as big as my thumb. Within a day or two, I had raging infection that lit up my face like a lightening storm. My face swelled, and I aged about 15 years.

I’ve spent most of the last week at the limit of my pain threshold. Finally, today, I feel like the antibiotics might prevail. Maybe.

I have love for all god’s creatures, but not these little fuckers.

Sorry, did I just write that? That really doesn’t sound like me. Perhaps I am not quite myself. But maybe, in another week or two, I will be.

The truth is that I’m cranky because I think it’s amusing, but I remain grateful. I’m here. I have another chance. I can afford the chemicals I need to stay alive.

I have people who love me.

Yeah. I’m good.

_________

* Not really. One nurse did have a crush, but it came when I was at my worst, and I needed her help. The Lord works in mysterious ways.

Posted in Life, Wall-E—The Neuroendocrine Tumor | 8 Comments

Blessedness

Posted by Richard on April 25, 2012

Blessedness

A few hours after my operation, I wept.

Yes, I was a simmering kettle of emotion. My neurosurgeon had recently informed me that my pituitary adenoma was massive, much bigger than expected, but he quickly added that the operation had gone well, so I was relieved. A few minutes later, I looked upon the faces of Kristina and two sisters, happy that my eyesight had been preserved.

As the grogginess evaporated, it seemed like I could taste and smell blood, so I imagined those vital senses would deepen with time and healing.

I took a few minutes to ensure that I could remember my life, and the lovely people in it.

Yet, inside, I was barely under control. My blood oxygen was low, and I struggled for air. With a silicon shunt in my sinuses to protect the wounds, my nose was so packed with blood that I could not breathe through it, and the very thought of lasting another two weeks so encumbered was daunting. The mental control I had to devote to this simple task was substantial, and I found myself frightened and frighteningly alone.

Perhaps all of that would be enough for tears.

But it was not.

My tears were not a sign of relief or fear, but of blessedness. They touched on revelation and unreserved happiness. They spoke of community and kindness. They reached to the heavens, but lived here with me on Earth.

They relieved me of a burden I did not know that I carried.

And they surprised the hell out of me.

What’s funny is that I knew Writers for Richard was coming. A few weeks before surgery, J.A. Zobair asked if I would mind if she worked with Steve Parrish and Wendy Russ to build a fundraising campaign to help us pay the bills during my two-month recovery. So I wasn’t surprised when many around me were. Yet when I visited the website, read the dedication, saw the dozens of editorial contributors and donors, I felt like untold years of cynicism and discouragement were lifted from my weary shoulders.

So, when my family left me to rest, I found that I could not. I wept with pure joy, for a gift that pulled one very tired soul back into the land of the living.

Over the next few days, I returned often to read the names of people I knew, and people who were strangers. I saw a few cherished names from real life, but most were online friends and kind people I haven’t yet met. I traced lines of connection from Dartmouth, Nova Scotia to other places in Canada, to the United States, to Europe, to Asia, and to Australia. I learned that I’m not alone, that people are beautiful.

I learned that love, actually, is everywhere.

So my words here are humble and heartfelt. Thank you. Each and every one of you. Thank you.

You’ve changed my life. You’ve turned a fortnight of challenges into fourteen days of blessedness that I will never forget.

Thank you.

Contributing writers to Facing the Sun: Erica Orloff • Jude Hardin • Wendy Russ • Jason Evans • Michelle Hickman • Sarah Hina • Amy Saia • Aerin Bender-Stone • John Kauffman • Kate Inglis • Alissa Grosso • Natasha Fondren • Travis Erwin • Jennifer Joseph • J.A. Zobair • B. Nagel • Niki Jabbour • Mark Terry • Catherine Vibert • Laurel Montgomery • Peter Dudley • Sandra Cormier • Melanie Hooyenga • Matt Shifely • Sarah Laurenson • Stacy Chambers • Aniket Thakkar • Stephen Parrish • Robin Becker • Nancy Bond

Posted in Author, Author, Life, Wall-E—The Neuroendocrine Tumor | 17 Comments

The Feasts of Lesser Men

Posted by Richard on April 16, 2012

Feasts

Stephen Parrish‘s The Feasts of Lesser Men is a spy novel based on the author’s real life experiences with the 8th Infantry Division (Mechanized) in Germany during the Cold War’s dark and dirty days. For most of this week, you can download it for free.

You don’t need a Kindle to read it; Amazon offers a variety of free reading apps, including Kindle for iPad. If you prefer a PDF file, simply let Steve know during the five-day free period and he’ll email one to you.

It’s one of the best way to market e-books. Write a terrific tale and let a couple of thousand readers become an army of promotion. Word-of-mouth has always been the most reliable way to grow a business or an idea and now, with the advent of Facebook, Twitter and the like, that army has the power to spread the message far and wide within a few hours.

Consider me one of the foot soldiers. You should march out and do the same.

Posted in Author, Author | 2 Comments

Writers For Richard

Posted by Richard on April 15, 2012

Facing

Three lovely friends — Wendy Russ, Stephen Parrish, and J.A. Zobair — have been running a wonderful fundraiser to help me manage the next two months of my recovery without having to worry about making rent or purchasing costly medications.

Their efforts have touched me more than I can say, and I’m usually quite good with words. In a nutshell, 29 writers have contributed stories to an incredible anthology — Facing the Sun — and you can receive a copy by making a donation. Any donation.

They had planned to turn it over to Telling Stories as soon as I was out of the hospital, and I was supposed to be released on Easter Saturday or Sunday. But then unwanted test results showed that I had developed diabetes insipidus, and needed more care.

So I really only arrived home late Thursday night, dry and weary, and I needed a couple of days recovery to feel ready to write again.

So, if you’d like to help, you can. The donate button is at the top of the sidebar. If you’d like to leave a comment, I’d love it. This has been one of the hardest and most rewarding weeks of my life, and Wendy, Steve, JAZ, and all of you have made it so.

But the rest of that enormous thank you will wait for another day.

Later: Thanks to everyone.  I’ve ended the campaign; it made a terrific difference in our lives.

Posted in Life, Wall-E—The Neuroendocrine Tumor | 5 Comments

Show Time

Posted by Richard on April 5, 2012

Richie

Keep a good thought for me as I head to surgery today.

Kristina and a few friends might provide updates on social media when there’s something to say.

I’ll be fine. I’ll see you on the other side.

Slainte!

Posted in Life, Wall-E—The Neuroendocrine Tumor | 4 Comments

The Nick Pick Solution

Posted by Richard on April 5, 2012

One of my young work colleagues, Nick Pick, has discovered the beauty of martial arts. In between calls, he’s full of questions and brimming with enthusiasm, so I occasionally teach him a few moves from Shotokan karate to help focus his mind, and drain some excess energy.

Since I’m not likely to see him — or any of my friends there — for about two months, I created a little video. I hope a little goes a long way.

I expect him to train hard. Osu!

Posted in Life, Wall-E—The Neuroendocrine Tumor | Leave a comment

End Game

Posted by Richard on March 29, 2012

Rl1

I am a patient man, but I wish I had a heavy bag to punch.

I’ve grown tired of waiting. Wall-E, the little neuroendocrine tumor, has overstayed his welcome. Cheeky little devil.

So, here’s how the Battle Royal of my life will play out. I’ve been lead to believe that my surgery will occur any day now, and that I will only have a few days’ notice. I have been through the pre-op drills, and marked and sent for another MRI and CT scan — and those results only have a shelf-life of 30 days. I have ten remaining.

I like my neurosurgeon, Dr. Clarke, and he comes highly-recommended. He’ll be working with Dr. Massoud, who is an ENT man; I know him very well because he was Mom’s doctor, too. He’s a wonderful, gracious man from Egypt, and I will always be grateful for the kindness he showed to Connie.

Mostly, I find the news encouraging.

The procedure is expected to take about five hours, but sometimes it takes the better part of a day. I will only spend three to four days in the hospital, and I should be out of bed on the second day. I should not be scarred because they’ll be going in through my sinuses. So my hair will not be affected!

Whew!

My recovery will last six weeks or more, and I’ll need to act like a dandy. I won’t be painting our office and I won’t be returning to karate any time soon. Perhaps I’ll be able to work on my second book, he wrote optimistically (which seems important to me now since the first book seems to be going nowhere).

I’m hoping the odds will be ever in my favor. I have a 50 percent chance of losing all pituitary function, and a minute chance of regaining some that I’ve already lost.

As a former wine taster and food writer, my heart does turn icy when I think about losing my senses of taste and smell. The chances are only ten percent, but know that I’ll be crossing my fingers on the table.

It gets better from here. I have less than a one percent chance of losing my vision, suffering a stroke, or dying on the table.

I’m not a betting man, but I like those odds.

What I don’t like is that Wall-E is expected to return. Dr. Clarke says it’s unlikely he’ll get it all, and that the sneaky little bugger will once again take up residence.

But that’s a story for another day. And hopefully a day that’s far, far away.

Right now, I’m thinking that I’d like to live happily ever after. At least for a little while.

Posted in Life, Wall-E—The Neuroendocrine Tumor | 10 Comments