Monthly Archives: September 2015

Initiative

It has been two months since my mom ended the one-two punch of radiation and chemotherapy, and quite frankly, her progress has not been great. She is still experiencing many of the cognitive deficits that caused me to take her in for evaluation in the first place. In addition, the treatments left her fatigued and lethargic.

On Monday, we went to see her neuro-oncologist at the Mayo Clinic, Dr. Kurt Jaeckle. He is a wonderful doctor, and we’ve been very pleased with his care. I expressed to him my frustration with her lack of progress. She eats breakfast, sleeps, eat lunch, sleeps, eats dinner, and goes to bed. Her mail is unopened. Her newspapers are in a pile, unread. She has progressed from a wheelchair to a walker, but only uses it to go to meals.

He listened, and then gave us a name for it – lack of initiative. This is not the typical lack of initiative, where you can’t find the motivation to get to the gym. He described it as an inability to initiate action.

The naming of a thing is powerful. I felt like the clouds parted and I could see, clearly, her problem.

It’s like this: Imagine you are standing in your kitchen. You mentally run through the list of things that need to be done: start laundry (but wait, first I need to fold yesterday’s laundry so the basket is available), unload dishwasher (but first I need to clear the counter so the plastic containers can fully dry), pay bills (but first I need to check the bank account), etc. etc. You can see the myriad of things and sub-things that need to happen, and you get paralyzed trying to figure out where to start.

That’s what my mom’s life is like. All the time. She lacks the ability to formulate a plan and execute it. All the countless options of life circle her head like a disorganized flock of birds. It must be maddening.

And this condition doesn’t just apply to paying bills and doing laundry. If she is sitting, she can’t get her act together to stand up. Either the message doesn’t get from her brain to her legs, or she gets distracted somewhere in the middle. Her brain gets exhausted trying to process all of the inputs, so it short-circuits – hence the sleeping.

Dr. Jaeckle gave us a few options for addressing the lack of initiative, so hopefully we will see some progress in that area soon.

Cross your fingers. For her sake and for mine.

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Scenes from Suburbia

On Tuesday mornings I pick Tyler up at his bus stop and take him to school early for Brain Bowl. Yesterday, as I was approaching an apartment complex near my house, I noticed a line of cars behind a school bus making its regular stop. As we sat there, I realized the bus was picking up a disabled student. The driver had to perform a complex routine of opening the side of the bus, deploying the lift, getting the child onto the lift, etc etc. The minutes dragged by. I’m not going to lie; I was aggravated. I was already cutting it close to pick up Tyler, and I’d left my phone at home while it installed a software update.

Blergh.

I resolved to stop being a negative ninja. I began by imagining that child’s mother, who probably feels the glares from the line of stopped cars every single day. I applauded the bus driver for taking such care with the student. I offered a word of thanks that my children are generally healthy. I started to feel my aggravation subside.

It was approximately at this moment that one of the stopped drivers began laying on the horn.

SERIOUSLY?!?!, I thought.

Seriously.

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Back on the horse

Like most new moms (and my baby is not exactly new!), I struggle to make exercise a priority. I thought that my lack of actual employment would give me ample opportunity to work out, but I was mistaken. I could never get my to-do list under control long enough to squeeze in exercise.

Complicating this situation is my longstanding struggle with anxiety and depression. When I graduated from college and parachuted into the real world, I was paralyzed with worry. Suddenly, there were no grades, no report cards, no affirmations of my cleverness. I was put on Zoloft and took it for the next five years. In 2007, I started exercising regularly for the first time in my adult life, and I was able to wean myself off the Zoloft. But if I don’t exercise, the anxiety nips at my heels and threatens to overwhelm me. 

After Hazel was born, I made 150 excuses for not exercising. Some were more legitimate than others. I developed chondromalacia patella, or “runner’s knee,” which required a few months of physical therapy. (That was a good excuse.) I didn’t have any proper-fitting sports bras. (That was not.)

Of course, when my mom got sick I went into survival mode. Every time I traveled to Jacksonville, I would pack my running shoes and workout clothes. And every time, I would find dozens of things to put ahead of exercise. And the anxiety nipped at my heels.

In the second half of August, the anxiety caught me. I found everything exhausting and overwhelming. I dreaded leaving the house. I had to change my behavior. I had to get back on the horse.

My limitations were few, but significant. I had to work out with Hazel, or while she was napping. And I had to work out during the day, as my domestic engineer shift starts when school gets out and ends when I go to bed. And I had to work out on the cheap. 

I feel ridiculous admitting this, but one thing that really helped me prioritize exercise was buying a few new pieces of workout clothes (from the Target clearance rack). New socks were an especially nice treat. 

In an ideal week, I walk with Hazel three times and use Amazon Prime Instant to do yoga twice during Hazel’s nap. I’ve stuck to this schedule for several weeks, and it has made a huge difference in my attitude. I don’t feel so helpless and overwhelmed. It’s not like I have less to do, or less to worry about, but I feel competent to handle my own life. 

For me, exercise is not about losing weight (although that would be great!). It’s my therapy. It took me a long time to treat it as something other than an optional leisure activity. 

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Friday! High Five!

And it’s not just any Friday, it’s a long weekend Friday.

I plan to spend the long weekend soaking up the last chlorine-infused hours of pool season. JUST KIDDING. I’m driving to Jacksonville, AGAIN, to try and take care of some administrative life tasks for my mom.

Le sigh.

The trip to Jacksonville has been made far more bearable by my (late) discovery of podcasts. Here are five that have gotten me through many, many miles of I-10:

  1. The X-Files Files. True love lasts for a lifetime, and I can safely say that 20+ years after it’s debut, the X-Files is my favorite television show. Ever. My best memories from high school involved being home alone with a Stouffer’s French Bread Pizza and the X-Files at 9:00. Turbo nerd. This podcast is hosted by Kumail Nanjiani, who is about my age. This means that we experienced the X-Files in the same way – in the dark pre-internet, pre-cell-phone, pre-social media 1990s. His commentary is insightful and hilarious.
  2. Ear Snacks. Andrew Barkan & Polly Hall have put together a delightful podcast for children and families. It’s sweet without being cloying, and even Tyler (12) enjoys it. He commands me to “Examine your fruits!” on a weekly basis. Full disclosure: Andrew and Polly both went to Amherst, which makes them indescribably awesome as well as talented.
  3. Sword & Scale. This true crime series examines horrific crimes from different aspects – the state of mental health care in the US and Canada, for example, or why some psychopaths can function in society and others end up like Ted Bundy.
  4. History Chicks. Two women discuss other women from history, but they provide interesting trivia (I love trivia!) and commentary along the way. I want to get the older kids to listen to this one with me.
  5. The Nerdist. This podcast is hosted by Chris Hardwick. I wouldn’t say he interviews people so much as chats with them while a recorder is running. I’ve really enjoyed the episodes featuring Jeff Bridges, Paul Rudd, Gillian Anderson, and David Tennant.

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The Time Eater

I’ve been absent.

I’ve been absent not just from this blog, but from my whole life.

It started at the very end of April, when my mom started acting unusual. On May 1, we found out why:

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Yikes. The non-technical diagnosis was “big-ass brain tumor.” This particular tumor started out as an oligodendroglioma, a relatively slow-growing variety. Some time in March or April, part of the tumor began growing as a glioblastoma, a very aggressive type. Mom had the vast majority of the tumor removed on May 6. She spent the next few weeks at an inpatient rehab facility, and was then discharged home to begin radiation and chemotherapy. When she went back to her house, we hired an agency to provide 24-hour supervision, because the surgery left her with cognitive and short-term memory deficits. It quickly became clear that the supervision was inadequate, and she moved to an assisted living apartment at the end of July.

This is an abbreviated version of events; my mother’s story is not really mine to tell.

My story has been one of constant movement, constant change. I have memorized I-10 between Tallahassee and Jacksonville, having made over a dozen trips back and forth since May. I can draw you a detailed map of the Mayo Clinic, where mom stayed for 11 days and where Hazel learned to walk. I can tell you more about brain tumors and proton beam therapy than you ever wanted to know. Untitled//embedr.flickr.com/assets/client-code.js

Even when I am home in Tallahassee, my mom’s situation consumes my time. When I am not making or taking calls on her behalf, I am worried that she’s safe, that she’s comfortable, that she’s okay.

I feel I have become a terrible friend, a distracted mother, and a needy wife. My temper has never been long, but now my fuse is even shorter. I don’t sleep well. I find it difficult to socialize. My creativity has dulled.

The last four months have been filled with crises and setbacks, and each one has tested my competence in ways not previously imagined. However, I am grateful to have been able to spend this time with my mom. I am grateful that I am able to help her, and I am grateful that she believes I can make good decisions on her behalf. I am grateful for her community – her friends and neighbors are just amazing.

I am grateful for Jason, who has never complained about our trips to Jacksonville. I am grateful for Hazel, who has been a consistently delightful companion through some very un-delightful situations. I am grateful to my Tallahassee friends, who have supported us by animal-sitting and bar-tending.

Life seems to be settling into a new normal, and I finally feel like I can breathe. A little.

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