Tag Archives: surgery

Stormy rises from the ashes of her own expectations

When KitKat and I launched this blog four years ago, we decided on a posting cadence of biweekly, thinking that between the two of us, we could manage an update to this blog once a week. We met that goal for the first six months and it’s been downhill ever since.

We’re more than two months into the new year and I have yet to post my annual “New Year’s” post, brimming with optimism and resolve. Never fear, I HAVE made a few resolutions and have actually made a fairly drastic change in one aspect of my life: I’ve started a new job that is consuming my thoughts and free time.

This was a big deal for me. When I started at my last job, after leaving the company that KitKat and I worked at together, I thought I would stay there until I retire. With my husband’s Parkinson’s Disease, I was anticipating the need for a flexible work arrangement at some point as his condition required me to provide more assistance. I thought that by building some job equity with my company that they would be willing to work with me on a flexible arrangement when that time came. However, when Oskar’s surgery transformed our daily lives by giving us back his mobility, I realized that I had other options. Although I liked my coworkers and my job (well, most of them, most of the time), there was limited opportunity for me to advance.dreams_dont_scare

Early this year, I accepted a new job. The company and my role are interesting and I’m enjoying it (although fully aware I’m in the “honeymoon period”). But the best part about making the switch was remembering that it’s never too late to make a change. After interviewing, I felt a bit nervous—everything sounded good about the position, but it meant going from a comfortable situation where I knew what I was doing to something unknown. And that scared me a little. Then I decided if I was a bit scared, that was a sign that I should rise to the challenge and accept the job. And KitKat had bravely made a job change a few months earlier and encouraged me to make the leap. So I did.

The day I started, my daughter Lucky sent me a quote from her aunt’s Facebook wall, it read:

“There is no statute of limitations on starting over. Re-invent yourself every day. Be the girl who walks barefoot and listens to the blues. Tomorrow, wear a trench coat and speak fierce truths. Be a phoenix. Be ashes. Burn down. Resurrect. Let go of the idea that you must always be who you have always been.”

Then she added, “You’re about to rise from the ashes…” 😉

I loved that because I needed the reminder—and I loved that my daughter sees me as someone who can continue to evolve and grow, even at my “advanced age.” I think, ultimately, that’s the theme of this blog: KitKat and I reminding ourselves—and each other—that we can be whomever we choose and strive to be our best, truest version of ourselves, regardless of the other claims on us…by our families, our jobs and society as a whole. And encouraging others to be their best, truest selves.

That’s what I want for my children, and that’s what I want for myself. And even though it’s sometimes “easier said than done,” it’s ultimately worth it.

 

 

Well, it’s not rocket science…

Right now, I’m sitting in a hospital waiting room as my husband has brain surgery. The road here wasn’t short. When he was diagnosed with Parkinson’s 13 years ago, we investigated treatments but found that there weren’t many options. The gold standard for Parkinson’s Disease is a drug called carbidopa/levodopa that Oskar has been taking for a number of years. As I’ve written before, it’s not a predictable treatment—sometimes it works, sometimes it doesn’t. Moreover, the longer one takes carbidopa/levodopa, the more likely one is to experience dyskinesia: Unintended movements caused by a surplus of dopamine in the system. These can be annoying (like when Oskar dropped my favorite mug) or potentially dangerous (for example, while driving).

For more advanced Parkinson’s patients, there is one surgical option—Deep Brain Stimulation (DBS)—but it isn’t a cure and the procedure can only be done once, so it’s usually not recommended until the disease is more advanced.

In recent years, Oskar started to reach a dosage level that brought on the dyskinesia. While the excess movements didn’t bother either of us much initially, it was becoming quite pronounced, and when he considered that along with the increasing frequency of “off” times, Oskar decided it was time to explore DBS.

Oskar volunteered to participate in a clinical study for a new device and underwent a series of tests to see if he was a good candidate for the surgery.

One of his consults required him to go off his medication overnight so that he was completely “off” while being evaluated. Then, they had him run through a series of motor tests to record his movements on video and time how long it took him to perform certain tasks. Then they let Oskar take his medication and re-did all of the tests with the carbidopa/levodopa in his system.

Now, I have seen my husband in both his on and off states hundreds of times, but the truth is I don’t pay attention to him much when he’s off. Oskar generally doesn’t like me to help him when his meds are off and it’s frustrating to watch him struggle and a bit depressing to see him sit there motionless. Truth be told, he’s not the best company when he’s off, so I usually go do other things while he waits for his meds to come back “on.” However, during the medical evaluation, I watched intently as he went through all of his motor tests both “off” and “on.” The difference was amazing. When he was off, he had a pronounced tremor, a blank expression, softer voice and very slow movements. When his meds came back on, you could see the relief flood his face. The tremor was replaced with dyskinesia, but he was more relaxed and able to do most of the motor tests with ease and greater speed. But throughout both on and off states, he kept his sense of humor and grace and reminded me once again what a classy guy he is.

The dramatic change in his motor skills was good news, though, because how well a person responds to the medication is an indicator of how they will respond to the surgical procedure.

brain surgeryOskar’s first surgery (left hemisphere) took 6 and a half hours. Time that he spent mostly awake with a halo screwed into his head, while the surgeon drilled a dime-sized hole in his skull and placed an electrode into his brain, looking for the optimal spot. They would test the location by having Oskar move his hand and leg and listen for the sound of the electrical impulses going from the brain to the muscle—basically listening for static. It took them five “pokes” to find the right location, but the doctor was pleased by the results once they hooked him up to the transmitter because Oskar responded to very low levels of stimulus.

Before the procedure, family and friends offered their support—Do you need anything? Do you want someone to sit with you in the waiting room?—and I was actually a little confused by it. This was a voluntary procedure expected to have a good outcome. It wasn’t an inoperable tumor or something… But as the hours wore on I started to get concerned; I hadn’t expected such a long time in surgery. My default coping method is denial, but that strategy requires one to keep busy so the real concerns don’t creep in. And that’s hard to do when you’re sitting in a hospital waiting room, alone, with a spotty wi-fi connection. After the successful completion of surgery number 1, I was grateful for KitKat’s company as I downloaded the day’s events to her over a glass of wine.

Writing this in real-time, Oskar just completed his second surgery (for the right hemisphere) last week. This time, they were able to place the electrode on the first “poke,” although they took two more passes at it to ensure they had the proper placement. Although both procedures were somewhat exhausting and wore him out more than he was expecting, we were glad to get past them—all jokes aside, it was brain surgery, after all. We’re anxious to get through his final surgery later this week (implanting the transmitter in his chest) to see how much of an improvement he gains when they switch everything on later in March. The large scars on his head seem like a small price to pay for the increased mobility he hopes to gain.

It's a good thing scars on guys are "rugged and sexy"...

It’s a good thing guy’s scars are “rugged and sexy”…

And there’s nothing like spending time in a hospital to remind you how fortunate you are. During these procedures, we both crossed paths with a number of people facing bigger challenges than us, and those encounters served as a humbling reminder of how lucky we actually are. We’re very optimistic about the outcome, but are trying to temper our hopefulness with reasonable expectations.

I don’t know what the future holds in terms of Oskar’s DBS results or how it might change our future, but I’m curious to find out. Yet, one thing Parkinson’s has taught me is to take it one day at a time—so you’ll find out when I do…a few months from now.

The rantings of a bad daughter

I yelled at my elderly mother tonight. If this blog is supposed to be a slice of life—an honest chronicle of being a certain age—then I should be “mature” enough to admit this ugly fact. I’m not proud of myself, of course. As soon as I stormed out of my parents’ house and slammed my car door, I turned to my husband and demanded to know: “What’s WRONG with me?!? Why do I let her GET TO ME like that?!” But my outburst had taken him by surprise, too, so he just shrugged sympathetically.

Everyone pitches in to do yardwork at Stormy's parents house

Everyone pitches in to do yardwork at Stormy’s parents’ house

I alluded to my aging parents in an earlier post. My dad has dementia and my mom has a host of other ailments, yet she’s reluctant to move into an assisted-living facility, even though my parents are no longer capable of maintaining a home and living independently. Now, my mom needs surgery on her hip and both knees. Despite her advanced age (86), the doctor is willing to do the hip surgery because he thinks she “still has a lot of life in her.”

That’s no understatement. While my dad is continually amazed that he’s lived this long and greets every day as a pleasant surprise—a gift to be slowly savored—I believe my mother fully expects to achieve centenarian status. She is in complete denial about the limitations that aging is placing upon her and who knows? If “will to live” counts for anything…or sheer stubbornness…she’ll be leading the chorus of “Happy Birthday” at my 100th birthday.

So if you’re half as astute as I know our readers to be, you’ve likely surmised that the aforementioned “yelling” had something to do with my mom’s impending surgery, her stubbornness, and the general stress a grown woman feels when she’s trying to do right by all the people in her life and constantly coming up short. Short of time, short of patience, short of grace.

box_ornamentsWhile it’s tempting to try and garner sympathy by relaying the whole conversation or past childhood laments, that’s all irrelevant. Overall, my mom has been a good mom. I know I’m not the only grown daughter who has baggage about her mother, and I’m fully aware that these incidents will seem small and insignificant when she’s gone and I’m facing my first Mother’s Day, birthday or Christmas without her.

But it’s sort of like telling the exhausted parents of a newborn to cherish the sleepless nights because “they grow up so fast.” After all, hindsight is 20/20—today’s myopic view is the result of a gray November day, relentlessly busy work schedule, upcoming business trip, Mom’s impending surgery, my equally stressed siblings trying to coordinate schedules to care for Dad, etc. So my mom’s assertion that it’s perfectly reasonable to expect one of her kids to spend hundreds of dollars and take several days off work to fly down with her to Florida so she can retrieve old Christmas ornaments (and let me add that one of her sons did this just last spring, but she didn’t take the gesture seriously enough to pack up the items she wanted to bring home) Just. Set. Me. Off.

The key to our harmony? I hadn’t learned how to talk back yet.

As I said, I’m not looking for sympathy. I don’t deserve it. She’s 86 and she raised me and that’s enough justification for me to go recover a moldy Santa or two. All I really want is to get this anger out of my head and onto this blog post, so I can let go of it and do the hard work of trying to regain my patience…because I know I’ll desperately need it in the days ahead.

And if any of you can relate to this story—and know that you’re not alone in your frustration—then that’s the silver lining.

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Postscript: This was obviously written a couple of weeks ago. My mom has since had her surgery and although it went well, the recovery process (with mom in a transitional care unit and dad at home with us kids trading off staying with him) is about as challenging as we all expected. However, I’m so blessed to have an abundance of siblings who are working peacefully together to shoulder the burden, and I empathize with all of those who must navigate the challenge of elderly parents on their own. My siblings are truly my parents’ greatest gift to me.