Yogurt Pup Down

“Merlin has the brain of an 18-year-old dog,” said the neurologist, pointing to our 18-MONTH-old pup’s MRI image on the screen. He honed in on the large streaks and patches of white in Merlin’s brain, then showed us a healthy dog’s brain, which was mostly blackish-gray with minimal traces of white.

“His brain is shrinking.”

My wife cried. I blurted out, louder than I intended in the small exam room, “What? Really? You’re kidding me? No.” The doctor wasn’t kidding. And though we suspected there might be something wrong with Merlin’s brain, we had expected a tumor or lesions – an ailment that could be treated with radiation or steroids, not one out of a science fiction movie.

Our sensitive gem of a dog that we’d adopted and raised from a pup had a rare central nervous disorder, NCL, seen once a year at the vet hospital. It had no cure or method to slow it down. And no amount of money could extend his life or our time together. Merlin had a month or two left to live.

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My wife had noticed changes in Merlin back in October. A shy dog always, he now seemed more withdrawn at times and fearful. He now shook his head after stressful situations, like a tick. I thought they were hiccups. My wife knew it was more. But Merlin ate his food and everything else seemed fine. Life went on, but my wife watched him closely.

December and the holidays rolled around and I got very sick. So did Merlin, though we didn’t know it. We thought the changes we noticed were behavior related. He wouldn’t go on walks anymore. Every blowing leaf, passing car, barking dog and random sound caused him to park himself on the sidewalk or roll over into the gutter. During one walk, as the sun set, my wife had to pick him up and carry him back to the car. Darkness spooked him.

On a late afternoon in January, with the low winter light glowing gold in those the moments when afternoon flips to evening, I heard Merlin barking and growling in the bedroom. Not normal. Turning the light on, I spotted him backed into a corner beside the nightstand barking and growling at nothing. He snarled and whipped his head from side to side, hitting the wall, as if trying to shake the grasp of a phantom.

I coaxed him out of the bedroom and got him to stop for few minutes when I spoke to him or fed him a treat or dinner. But it continued, on and off, for a couple more hours. Normal behavior and normal dog for a few minutes, followed by the head shaking.

At the vet the next morning, we showed her video of Merlin and explained his behavior over the last month. This isn’t normal, she said bluntly, and yet had no idea what it was. She recommended seeing a behaviorist first, then possibly a neurologist. We should have skipped right to the neurologist.

During our rapid “discovery period” of Merlin’s illness, my wife sensed Merlin was having vision problems. So, with the behaviorist a distant option, I made an appointment with an eye specialist. Across the valley, I drove, through a monsoon and rain-filled freeway cluttered with blowing trash and the shattered remains of Christmas trees someone didn’t secure to their truck, to discover Merlin was going blind.

But not because his eyes were bad, or not reacting to different colored lights and other tests that I never knew existed for a dog, but because the signals from his eyes weren’t reaching his brain. His optic nerve ignored the information, which is a central nervous system disorder, and not the news I expected or wanted.

The vet explained in detail, but my mind traveled somewhere else at that moment – to the realization a tidal wave of grief was rolling my way and there was no running or hiding from it.

The vet’s advice: Get the “first available appointment” with a neurologist.

Several days later, we dropped Merlin off for an MRI and spinal tap and waited for the news. We knew it was bad when they called and said they performed the MRI but not the spinal tap and the doctor needed to see us later that day. We knew what the MRI images would reveal without seeing them – an abrupt change to our lives, a shock to our hearts, and doom and gloom.

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My wife loves dogs. She feeds them, walks them, and gives them more attention than I get from her. Yes, jealousy. And they depend on her and love her in return. It’s something to see, this bond. And my teenage daughter mirrors my wife in her love of the pups.

Now if owning dogs has opened my eyes to anything, it’s why we don’t allow euthanasia for humans in most states. Who wants to make that decision? It’s horrible and gut-wrenching with dogs. I can’t imagine what it would be like with a human. How long do you wait to do it? What’s the best timing? What’s best for you? How much suffering will everyone endure during the process of deciding?

You hope and pray you’re doing the right thing. And then you live with the choice you made and the memory of the last moments. Forever.

We made the decision to euthanize Merlin. We didn’t want to see him suffer the long seizures, or swing his head into another wall or piece of furniture. Or growl at us, or bite unintentionally. He’d already started not to recognize us. And we didn’t want to him to live in our memories that way.

I remember each dog I’ve taken to the vet for the their last visit. Mocha, our chocolate lab, age 14. It took two shots to end her life. She retrieved anything you threw, was a strong hunting dog, and slept next to my wife’s pregnant stomach at night. Harley, age 15, an all-black, low-key chow mix who was there when we brought our daughter home from the hospital after she was born, and who shared many of her childhood years. Then there was Luna, our magical yellow lab, age 8, cancer, who could read my wife’s mind and who was the most balanced and lovable of our dogs.

I live with the memories of these endings.

With Merlin, I held it together pretty well and compartmentalized the grief while I could. My daughter and wife, well, reality crushed them. Grief and love for Merlin teeter-tottered their emotions while I watched from a distance waiting to carry out my duty at the vet.

Merlin lived like an alpha wolf his last week. We fed him every great food we could think of. My wife cooked him a steak and gave him piles of chicken chunks in his dinner. He enjoyed peanut butter bones several times a day. And he snacked on his favorite jerky treats whenever he liked. A king’s life, one might say. I surprised him with a full yogurt, not just the remains of mine. One night he hopped up and ate scrambled eggs from a plate on the kitchen table. Manners no longer required, my friend. Go to town.

Life was good, life was fun in those last moments together. But they went fast.

It’s a strange feeling not to be able to swallow. It happened on the way to the vet and I thought I was going to have a panic attack, the emotions of the situation bubbling over. Our sweet little dog. The coolest looking dog we’ve ever had. His end coming way too soon.

I don’t feel like going through the details of the last hour of Merlin’s life at the vet. They were caring and gave us time to say goodbye. The moment I’ll never forget is when they gave Merlin a sedative to make him drowsy and he jumped and placed his front paws on my lap and I helped him up. I spent about 15 minutes with him curled up there, sleeping, as a petted him in the silence of the darkened room, saying goodbye, wondering what it was about this dog and the moments we shared that touched me so deeply. I’ll never know or understand. He just did. And that’s enough for me.

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While I was on IVs and asleep, Merlin found a comfortable spot next to me.

 

 

 

 

 

cystic fibrosis postpones Christmas

Santa arrived early this year and surprised me with the flu. 4 days prior to Christmas. Joy. What a lovely gift.

Luckily, my doctor gave me a better gift and allowed me to do home IVs and skip the hospital, which was the best surprise of all. I hate the hospital, and having to go in during Christmas would have been horrible – a trip to hell for the holidays.

Mercy granted and accepted.

That doesn’t mean there wasn’t plenty of pain and suffering to fill the holidays and my vacation. These virus-caused exacerbations shred me now. It’s getting harder to fight them as I get older and I’ve asked the CF team for pain management in the future, as my days of “manning up” to fight the discomfort are over.

I miss the days of my youth when I fought viruses without hospitals and meds. Those years don’t seem real any more, but rather a past mirage I dream about. That was a different person, not me.

So we moved our family Christmas a week to avoid me passing the plague to others, though my wife and daughter did get it, but not as bad as I did. It was more of a 3-day cold in my daughter and a mild cold in my wife. Meanwhile, I won three weeks of IVs. My inflammation shot from around 5 to the 100s and my O2 tanked. That seems to be the pattern now.

While doing my treatments and opening presents with my daughter and wife on Christmas morning, I started coughing hard. I felt something snap or crack but couldn’t stop coughing before it broke more. A rib, probably. I was sitting in a chair I don’t normally sit in and the position must have put more pressure on my lower left side. Snap, crackle, pop.

Luckily I had some expired Vicodin because the pain when I coughed or blew out was blinding. And I didn’t feel like going to the ER on Christmas. How fun that would of been.

Today, three weeks later I end the IVs. Still not 100%, but feeling lucky to be alive after the beating I took. I know it can always be worse with CF and I should never complain. One day at a time filled with gratefulness is my plan moving forward.

When the wheels come off

Aside from coughing up blood and hospitalizations and losing lung function, one other element of cystic fibrosis I hate is when you’re doing okay and then you’re not. It’s like a magician making a quarter disappear. One minute it’s there, one minute it’s not. One day I feel well, the next day I don’t. This then leads to more days of not feeling well and the mad scramble to play Sherlock Holmes and solve “the mystery of the disappearing good health.”

This recent “flip” started when I failed an anxiety/depression test. Well, I didn’t really fail it, and it wasn’t really a test. All I know is at some point during a recent CF clinic, I must have filled out a questionnaire about anxiety and depression, the latter subject being something I never think about. I know I have anxiety. The daily fluoxetine and “as needed” Ativan cocktails make it pretty obvious.

What surprised me was the call from the clinic telling me I’d scored higher for depression than anxiety. Let’s skip to the chase on this one: work problems? I’m thinking, “oh yeah.”

The medical solution: Increase fluoxetine from 20 mg to 40 mg. Okay. Why not?

This is how it went.

Day one: Nice buzz for most of the day. I like it. No depression here, there or anywhere. Not that I’m sure there was any before, but life is good and I’m feeling fine.

Day two: Still feeling good. No buzz, but not bad. Noticed some shortness of breath later in the day. Ate way too much food in my happy state. Paying the price with bloating.

Day three: Holy shit, I can’t breathe. The mucus is thicker, harder to get out. I’m all screwed up now. Bloating like a cow. What the fudge? The wheels come off.

Day four: Speak to the clinic. Back to 20 mg of fluoxetine and one of the worst, most necessary, medicines ever invented: prednisone.

The search for my equilibrium begins again and I am reminded of what happens when I don’t ignore the paperwork they give me at clinic.

 

My obese brain

If you’ve read my whiny posts recently, you know I’ve been trying to solve some challenges at work, and that I’m feeling like I’ve lost my equilibrium. Well, I can tell you I’ve discovered one reason for the mental speed bumps: I’ve been spending way too much time drifting on the web, reading article after article on any and all subjects. Especially ones about trump and the election, which I’m still amazed by.

I’ve concluded that part of my recent frustrations stem from my inability to concentrate for extended periods. I don’t blog as much as I once did, and I don’t read as many books. I tend to spend a lot of time on the internet visiting the same sites over and over, checking them multiple times each hour.

While watching TV with the family, I find myself picking up my phone to check twitter or Instagram. Or reading my email. I never used to do any of that.

To combat this problem, I’ve created new family rules. No phones at the dinner table, which is really my wife’s rule, but my daughter and I tended to push the limits of it. No longer. Now we follow it.

And no more phones or computers if we’re watching a movie or television show. We concentrate on one thing at a time now. I noticed my daughter not paying attention to movies and it drove me nuts. Then I started picking up my phone too. (Sound of a screeching halt). The new rule is if you want to use your phone or computer: you leave the room.

So if I’m having a problem like this, how are electronic “distractions” impacting my daughter? I worry about her consuming more than she creates. The phone rarely leaves her hand and is always close by if it does. It’s an electronic clutch and crutch.

It’s not easy to break a habit like this, and I’m an adult (at least in age). I find myself going a day or two without excessive surfing but then falling back when I’m bored or tired. Or while doing my 4.5 hours of treatments each day.

My last thought-and I have no proof of this, it’s just a hunch – is that my surfing large amounts of negative news stories takes a its toll beyond my poor concentration. My gut tells me it extracts a greater price: anxiety, depression and hopelessness. Yay, a triple scoop of hell.

Maybe there is such a thing as too much knowledge in this day and age. I’m thinking it’s time for my brain to go on a diet, especially with four years of a rich oaf leading our country on the way.

Discombobulated

I know I’m lucky. The luckiest of the lucky. I see the sand hitting the bottom of the hour glass each day. However, right now, my luck and sense of time feel like a heavy weight crushing me. The frustration I have with my life is wanting to do more with it. Work isn’t going well, as I wrote about in my previous post. And that’s a big part of my mental woes. But it’s more than that.

I have this gift of time and I’m not sure how to make it count, to maximize each minute.

I read an article on happiness and it said that sometimes the pressure of feeling like you have to be happy causes unhappiness. I’m not unhappy. I’m frustrated. Most with CF don’t get what I have. So, perhaps, like happiness, the pressure to make the most of every minute is causing me to be irritated with the time I have and the feeling I’m not doing enough with it.

And then there is trump. Wow. Life makes less sense now than it ever has.

 

 

From hero to zero

[I may be the luckiest guy in the world, but even I have moments when I can’t figure out how to get out of a maze. That’s what this post is: my way of looking for an exit.]

For the past two years, my new job has been rough on my ego. More like, crushed what little I have of one. I had planned on being higher up in the food chain when I was hired, with more say over the direction of the company and my own path – a righthand man to the VP.  Ah, but he went and got himself canned the day before I started. Nice, as he was the reason I joined.

Luckily the new company still wanted me. And I’ve treated the last two years as a learning experience with a certain quote ringing round in my empty head: You’re not who you think you are, you’re who others think you are. 

Oh, how I’ve learned that lesson – and many others.

A headstrong group of individuals on the team is a chummy bunch and blocks others from being part of important decisions. It’s a fan club of 3 using the Hollywood style of complimenting each other (you’re great; no, you’re greater). I’m living a life of exile thanks to this inexperienced trio, which ironically I was supposed to have some creative control over.

The deepest cut happened when a replacement manager, who is a pal of the threesome, joined, reinforcing my downward trajectory from hero to zero. If there is a silver lining, I’m not alone in my frustration with the Hollywood 3 or the new manager and his weak management style. But as good as it feels to know others suffer too, it doesn’t grant me input and influence in projects.

I’m shooting to live at least another 3.5 years to see my daughter graduate from high school. How I’m going to fill my time between now and then (other than time spent in the hospital and doctors’ offices) is the question that haunts me.

It’s impossible not to ask: What if?

What if I didn’t have cystic fibrosis? This frigging nightmare disease cuts into every decision of my life. Some might just take it easy and collect a check. Or find another job, which isn’t easy to do with cf. I need to feel like I have value and I’m spending my time well. But it’s a heavy load when cf and others control my destiny and I can’t figure out how to move forward.

Isolation at home

One cold is all it takes to send me to the hospital these days. And when my daughter or my wife gets sick, it becomes a game of “stay away from daddy.” No hugs. No driving in the same car. We order take out. No eating at dinner table together. No touching cabinet handles or door knobs with a bare hand for me. My wife sleeps in a different room. The dogs pick sides at night, though they’re both rather sleep with my wife. Join the club, mutts. Join the club. What self-respecting Labrador would pass up a bed for a couch?

I’ve lived like this the past 10 days because my daughter caught a cold, then gifted it to my wife. Now I avoid both of them like we’re playing a game of tag and they’re it. I stay a minimum of 3 or 4 feet away and hope I don’t bump into a stray germ floating in the air, or stuck to a surface, waiting. It’s such an uncomfortable feeling to fight an enemy you can’t see. It creates a hyper-state of awareness in me-was that sneeze the first sign? Did that cough feel different? Am I feeling “off” today? Tick tock, tick tock.

So I wait.

How many times in the past have I thought, “I made it, I didn’t get” only to be fooled at the last minute?

I need someone to invent “germ-be-gone” glasses. They would include a powerful laser  to burn away bacteria and viruses. Now that would be awesome. Until then, I navigate the germ maze in my house and cross my fingers one of those little bastards isn’t going to latch on to me and send me to jail for two weeks. Tick tock.