Are we ever really “cancer free”? Not a chance.

Freelance writing used to be something I thought I’d enjoy, until I started keeping an online “documentary” about my mom’s health. What I didn’t include was how cancer pushed us into limbo for nearly three years.

I have a six-year-old boy who for the last three summers spent his time with me and my mother in waiting rooms, hospitals, and doctor’s offices. Last night, he told me that he is afraid to leave our house, he gets a tummy ache when we listen to NPR, and he has recently started having trouble sleeping at night.

If I had any question that our long-standing affair with morbidity was affecting his childhood and happiness, last night it was confirmed. In his short life, he has lost his grandpa, his grandma, his great-grandpa, and even though he was not acquainted with him, a young student at his school. I don’t know if most kids have the opportunity to know their grandparents as well as my son did, but as soon as he was born, we moved from Texas to Kansas to be near them. We needed them, and they were so excited to have a grandchild.

My son barely knew my dad before he died. Then, my mom was diagnosed with esophageal cancer, and not having a close network of “mom” friends of my own to call on for help, I dragged my son to appointments with us. He was there when my mom’s oncologist told her that her treatment options were over. I don’t know how much of it he understood, but he’s a smart kid. When four of the five grown-ups in the room are either crying or wringing their hands, it doesn’t take a genius to know that the news is bad.

Over the last few years, I identified myself more as my mom’s keeper than my own person. She had intervals of time where she was in decent health– for a few months at a time at the most. There were times when my brother and I were resonsible for her rehabilitation and many more times that we felt like we suddenly had a teen-ager to look after. A grown adult, post-stroke and seizure, vision loss, afraid to drive again– you can surely imagine the wild places our imaginations would go when we called her or stopped by and she was not around. Most of the time, she’d be out walking with a friend or have gotten a ride to the drug store. But in the time it took to locate her and make sure she was safely at home again, my mind went to crazy and back with worry.

I so desperately wanted her to be able to babysit my son, and for a time, I left him with her for a little while. But not without first putting a large sign by the phone with step by step instructions of how to dial 911 and take care of Gramma in case of emergency. I would leave him with her while I attended rehearsals (until my husband could pick him up) and my mind was never completely on the music. It’s impossible to concentrate when you aren’t sure if your babysitter is going to have another stroke or take another nasty fall.

So here we are, finally free from worry, but one Provost smaller. And for the first time since my son was three, I took him to the pool to teach him how to swim. As it turns out, he’s a fish. Just like me. He fearlessly dives under and it seems like he’s found a natural talent that’s been hiding away until we could make time to relax and have fun.

Next on the agenda, (when this insufferable heatwave moves on) will be riding a bike without the training wheels.

I will do anything to see my child happy. This tar pit we’ve been slogging through has finally taken a toll on us, and now we’re in recuperation mode. Somewhere along the line, I’m hoping that I’ll molt and find my old self hidden away under all these worry lines.

Here’s to making a left turn in the yellow wood.

What were you saying again?

As my dad got older, his hearing loss became more and more evident.  At home, they would listen to the television at a volume that made my ears rumble. Anytime you needed to communicate with him, he’d grunt, struggle to grab the remote, hit mute and say, “Whaaaaaat?”  You could have a conversation with him and he’d turn and leave the room while you were in mid-sentence… completely oblivious that you were about to get to the punchline. He had some powerful hearing aids, but in one ear, he was completely deaf, and the other he suffered about 80% hearing loss. He blamed his deafness on childhood mistakes (shooting swamp rats without ear protection), but probably the majority of it started when he was teaching industrial technology. He used loud tools everyday, and spent hours with his head underneath cars while kids gunned the engines. (Listening for problems, you know.)

At one point, I was driving a Subaru WRX (the most fun car I’ve ever had), and all of a sudden, I started hearing this horrible screeching noise from the rear of the car. It only happened when the car was in motion, so I couldn’t point it out to my dad while it was idling in the driveway. He took the car for a test run one day, and I looked to him for a diagnosis. His response infuriated me: “Gee Becky, I just don’t hear anything. It’s probably nothing.” I couldn’t believe he was downplaying the jarring, unsettling noises coming from my car. It was a couple of years later when it dawned on me that he honestly didn’t hear it. (It was a rock lodged next to the brake pad. And the problem righted itself not long after he drove it.)

Lately, I’ve noticed my mom’s hearing isn’t what it used to be. Her sister and her mother both have some hearing loss, but they both wear hearing aids and you would never know it. If I’m in the driver’s seat talking with my mom, she doesn’t always acknowledge that I’ve said something the first couple of times. (It’s definitely worse in one ear.) I’ve suggested that she get her hearing checked and she clucks at me and changes the subject.  Her “what were you saying again” noise is “Hummmm?”  I don’t think she even realizes that it’s always part of the conversation.

What really frightens me is my own hearing loss. Part of what makes me a great musician is my ability to hear pitches accurately, and tune nanoscopically to what others are singing around me.  But I know that I’m also going to lose my hearing– and in fact, I already am. I use earplugs every time I use the hairdryer or the espresso maker, I plug my ears every time Kevin blows his nose, and I have noticed that my tinnitus is so bad some mornings that my neck hurts clear down to my shoulders. The rumbling in my ears keeps me awake at night, and I can hear every snap of my heart magnified in my pillow.

These are all symptoms my dad suffered from every day for years. It’s a noisy enough world without the fuzz that’s manufactured in your own head.

It’s no wonder he took his “ears” out at the end of the day and unplugged. If his head is anything like mine, there’s a symphony swooshing, ringing, and thundering away.

And it’s never really quiet.

Recalibrating faith

After Mom got sick in May, I took a long hiatus from writing, and plunged head-first into taking care of her. It was a very scary, dark time for our family– even more disruptive than when my dad suddenly passed away.

When Mom was admitted to Shawnee Mission Medical Center in July, the hospitalist doctors all tried to prepare Sam and I for the hard reality: Mom probably wouldn’t make it through the day.

Have you ever had a doctor tell you this? Tell you your loved one is so far gone that they don’t know if they can stop internal bleeding and that blood transfusions (the last resort) probably won’t be enough to save her?

It’s far scarier than having your other parent plummet to his death down a flight of stairs. I don’t know why, but I suppose it’s because I knew I’d be witnessing her death first-hand.

Part of me would like to acknowledge that the prayer Mom received from all her family and friends had something to do with her eventual, yet slow recovery. But it’s more than the God factor.

I watched, everyday, as doctors and nurses strategically mapped out each life-saving step.

I became acutely aware that this dance taking place with her mortality was happening with or without God. I stopped going to church for nearly 5 months. I don’t think I called out to God at any point in time during her crisis– in fact, I deeply questioned how God could plague my little family with so much tragedy in one year.

To this day, I feel a sense of abandonment and when I’m at church with Kevin and Jake, I feel as though I’m an imposter at some kind of play where everyone else “gets” it, and I’m in a fog.

I miss feeling safe, and it saddens me to think that in the last year (after losing Dad and nearly losing Mom) I may have completely lost my faith in God and all things beautiful and good.

How do you put a band-aid on faith that’s been completely demystified?

I begged her doctors for healing; not God. I watched her doctors manipulate her bloodwork week after week; not God. Everyday for a month, I stared at bizarre (Seventh Day Adventists) pictures in the hallways of an archaic Jesus “laying hands” on the doctors who were performing surgery or pondering a diagnosis.

I just didn’t see things unfolding in a spiritual way. It was the science that cured her. It was the radiation, the chemo, and the swift precision of her doctors that halted the growth of her tumor. Not God, as I see it.

Someday, perhaps I’ll rediscover the faith I once had that was such a big part of who I am. Today, I am a question mark. And the sad thing is, I don’t have the inclination to explore my shortcomings in this department. I really don’t care.

It’s miraculous that she recovered. Yes, thank God. But my deepest gratitude will always be for Dr. Coster, Dr. Custer, Dr. Repine, Dr. Fried, Dr. Kakumanu, Dr. Silver, Dr. Young, Dr. Jurani, and Bonnie, Vicki, Mark, Dani, Brenda, Joy, Jennifer, Mary, Faith, both Beths, Colleen, and all the other nurses who either helped for just a minute or a whole shift– because of YOU, my mom is alive today.

Same as yesterday, tomorrow, always

*I wrote this months ago, and although circumstances have changed drastically since then and Mom’s cancer is gone, I felt I owed it to other caregivers out there to share the hardships my family and I have endured in the last five months. If you are a caregiver, or have been a caregiver, my hat is off to you. I hope you can ask for help more often than I did. *

A few days ago, Mom asked me what I was going to do with myself when all this cancer crap is behind us.

I really don’t know.

I will be 35 in a couple of weeks, and I have never been so completely without a plan. Graduate school is totally out of the question– I can’t really say I miss the pressure of being in school; going back to teaching might be an option, but school districts aren’t hiring right now.

I’ve taken jobs that I’m grossly overqualified for– simply to make me feel as though I’m serving a purpose, but I find no satisfaction in doing something for the sake of doing something.

And the most mundane job I’ve taken on– one that is 24 hours a day for days at a time, is caregiving.

I dress wounds, I prep feeding tubes, I refill water bottles, I help shower, I manage diabetes, I distribute medicine, I move and clean the commode, I run errands, I take care of paperwork, I answer phones, I greet visitors with as much saccharine as I can muster, I update a carepage when I have the time, I chauffeur, I help dress, I wait, wait, wait at every appointment, I clip nails, I retrieve hats, I adjust the volume, I look after midnight bathroom breaks and unplug pumps, I change the cat litter, I wash dishes,  I change sheets, I change sheets, I change sheets, and I change sheets, I retrieve, I put away, and when I have 10 minutes to myself, I fill my free time with longing for my old life.

This goes on 24 hours a day. I never stop, I never get a nap, I never have a chance to be still. It sounds like a full-time job, and it is, but I’m not salaried. The only benefit is that we don’t have to hire some stranger to come take care of my mom.

On top of that, I have ANOTHER home, my home, where I have a husband, a child, and animals that I also am attempting to maintain. I am totally at the mercy of kind people that will step in for a few hours and look after my mom– but mostly people say, “Call me if there is ever anything I can do to help.” (I do not have time to call people and negotiate a time next month that will work for you.) Everyday, I make a flying trip to Olathe to retrieve Jake from his preschool, and I have to leave her alone until I get back.

In a few weeks, my choirs will start up again, and until I can locate a “babysitter” to stay with her for the hours I have to be gone, I am going to have to give up the one thing that makes me happiest.

She doesn’t ask my brother to help unless I’m past my crazy breaking point. He works a full-time job and has a family of his own– but at least he sleeps in his house every night; with his wife, his dogs, and the kids across the hall.

In the last two months, I have slept in my own bed eight nights. (And rarely consecutively.) Why am I keeping track?? Because I have nothing else to do. Because it’s hard to make a baby when you never sleep with your husband. Because it’s hard to correct a sleeping disorder that your child is developing. Because my hands are completely tied, and I am unable to fill the role of wife and mother that make me who I am. So I pine away for the time I can just “be” at my house with my guys, and we aren’t crashing around to get the lawn mowed, or standing in line at the DMV, or running to the post office, or trying to plan what to do with the piddly amount of time we’ll have together next week.

Every day, I spend so much time with myself, and I’m finding that I am capable of so much more than I ever realized. I have found that I could be a decent RN, and that I might enjoy it. I have found that I don’t miss music as much as I thought I would– but the absence of music (and musician friends) in my life could be one of the reasons I’m circling the black hole of depression once again. My mom has friends call and stop by every day. People that I assumed were my friends have de-materialized, and I’ve spent the summer slogging through all this completely alone.

It’s almost like I’ve taken a leave of absence from myself, relocated to a new address, and taken on a new identity. No, it’s not almost like; that’s exactly what it is.

So today, I’m home because my mom asked my brother to stay the night. She made sure I’d be back Saturday evening, though, so we wouldn’t inconvenience him any further– because he’s the one with the full-time job. Not me.

Do I sound bitter? Probably so. Don’t misunderstand, I love my mom. But we’re only just half way through her treatment, and the chemo at the end is what landed her in the hospital for a month at the beginning. So I have to admit, I don’t know what I’m going to do when all this is over.

It really doesn’t matter. I’m learning to live my life with less. I just wish there could be more joy.

Palestrina and paychecks

I want to hike the Appalachian Trail.

When I told Kevin this, his response was not exactly what I expected.

He smiled and said, “Have fun.”

Then he chimed in, and decided that certainly, if we ever had that kind of time off and the money (5 months or roughly 5 million steps and several thousand dollars for supplies, plane tickets, and a take-along-bear-resistant nanny for Jake) he’d totally do it.

He doesn’t broadcast it, but he stomped all over Russia and roughed cold showers and beet soup for six months. I don’t see how this would be all that different…

It’s great being married to someone who not only takes you seriously, but listens to your unrealistic dreams and jumps on the band wagon with you.

In fact, since we met, there is not one single endeavor that he has not encouraged, financed, supported, or counseled with me about– and I’m not always the most sensibly minded.

For years, I’ve tried desperately to make a living as a musician. Unless you are in the field of education, this is really more of a pipe dream. And after filing taxes for 2008 and watching him squirm while we entered all the various non-taxed music related gigs I had, I realized that the craziness needed to stop.

Why don’t we have a disposal in the kitchen sink?

Because I haven’t worked a full time job since before Jake was born. And that’s approaching 5 years. It’s no wonder Kevin’s gut reaction to a new pair of shoes is sweating and convulsions. We don’t live beyond our resources, but spending for us comes with psychological retributions.

I miss conducting very much. There is no doubt about that.  I’m very good at it, in fact, better than average (if you were to ask my advisers at UMKC), and because I’m not heavily involved in a music career does not mean I have any less ability.

I recently realized how much I do not miss filling my weekends with mediocre church music. I always believed that the measure of your success was “how often you are called on to use your instrument.”

Now I know better.

Last year, I was juggling three church jobs, and I’m pretty sure I spent more time with Jesus and Abraham than I did Jake and Kevin. And for what? A pitiful stipend that may or may not have paid the gas bill.

I’m done seeking money from the church for a living.

It’s far more rewarding to be at church for intrinsic reasons; and leave the music-making to those who don’t care either way.

So for now, when the work week is over, we’ll load up the car, drive as far as we can, and spend our weekends with bugs, grass, blue sky, flowing waters, and the quiet.

Sunshine through adversity

The pointy, snot-nosed teacher here at school that made me feel so awful when I first got here has redeemed herself.

I wouldn’t say we’re friends, because our communication is limited to extreme brevity.  But I actually like her.

We have a lot in common. Who knew.

There is one person here at work that I still haven’t been able to break down. I see her maybe only once or twice a week, and I flash a warm smile at her each time. 

Her response: She averts her eyes and fixes them on the ceiling. EVERY TIME.

I’m starting to think that perhaps she has a problem with nice people.

Then, out of the blue, we nearly crashed into one another while in the bathroom, and in her midwestern farm girl voice, she says, “Well, hello Becky! How are ya today?”

Naturally, I recoiled and was completely stunned.  I returned the greeting in kind, offered another warm smile– but didn’t go over the top with my usual pink, chipper, happy-filled salutations.  I shook my head and clucked for the next hour. 

Since then, she’s regressed back to the iron hog that she’s always been.

I believe she could use a peppermint enema.

Just sayin’.

Happy Friday, people.

Monks backing Collegium

Two weeks ago, Collegium sang at the St. Louis Abbey in Creve Coeur, Missouri.  This was my first real-life experience with Monks.

The rest of my group caravaned from Kansas City, but I went with Kevin and Jake so I showed up at the Monastery by myself.  I walked into the cathedral– only to find a herd of monks singing.  I backpedaled out the door, found another door, and accidentally walked into the same hall– only this time even closer to them. 

Not exactly how I’d pictured them– wearing the brown robes with the little rope tied about the waist; instead, this order wears long black robes. 

And they weren’t having choir practice; they were observing part of an office of daily Mass.  It’s Lent– which is the most somber season of the church year, and they were singing chant in Latin that I didn’t recognize.

In my life, I have sung countless Requiems, Masses, Te Deums, Magnificats, and the like.  The smaller portions of daily matins are songs I’m completely unfamiliar with.  While I knew I needed to find my fellow singers– I found it was hard to tear myself away from the beautiful strains coming from the men kneeling in the next room.

The attendance at the concert was somewhat small, but a large portion of our listeners were the monks. 

Some were still in robes, some were wearing black from head to toe, and all of them crowded into the last row. 

When we were done singing, one of my colleagues told me that this monastery is paying our way to Picolo Spoleto this summer.

I think it’s sad that neither cathedral in Kansas City has embraced our group.  We sing early music (which is all sacred) and we are all volunteers.  (Granted, we’re professional musicians by trade.) None of us is paid to be in the group, but we sing together because sharing our voices with one another makes music fit for angels. 

It costs a couple thousand dollars to rent either cathedral here in town for a concert, and we simply do not have the budget for that.  Thankfully, Visiation Catholic Church (built in the old Mission style) is giving us a deep discount, and we’ll be singing there in a couple of weeks.

If you are in town, come hear us.

April 3, 2008

7:30

Visitation Catholic Church (5141 Main, KC MO)

We’re singing Tallis, Victoria, Gombert, Gorecki, Verdi, and a piece by James Eakin.

I want to send a big THANK YOU to the Brothers at the St. Louis Abbey and everyone at St. Anselm that helped make our performance there possible.

Embracing the angries

When I reflect on the choices I’ve made, the conversations I’ve had, and the time I’ve spent in self-indulgent isolation in the past year, I know now why I’m so happy.

We live comfortably within our means, and what we can’t have– we can’t have.

Vacations and travel opportunities have passed us by this year, graduate school hangs in the balance– but the house remains firmly planted in the ground and thankfully, the mortgage still belongs to us and not the federal government.

I’ve spent the better part of the last year walking around in reaction mode– passively managing the incidentals of everyday life.  And in the last year (especially– but even longer than that) I’ve been such an angry person. 

I honestly don’t know why my husband loves me!  In fact, a few years ago, when I was in a really dark place, I suggested he leave me because I was making us all miserable.  (Depression is wildly unpredictable, and it’s a wonder that those who suffer with it manage relationships, marriages, jobs, parenthood, and life.)

Under the umbrella of depression, angry is an everyday, all day, pervasive wart on the brain.

Today, I guess you could say I’m a recovering depression-ist. I don’t know that much about depression, so I suppose it’s possible that like alcoholism, you’re never completely far from that slippery slope. But being here, on the enlightened end of the disease, it’s easier to hook into the earth and hang onto reality. 

It feels good to be angry.

And it feels good to sing and not want to cry,

and it feels good to get spun up about a concert,

and it feels good to drive my car with the windows down while my kid chatters contentedly in the back seat,

and it feels good to fix someone’s broken bracelet,

and sleep all night,

and have clean hair,

and paint my toenails,

and watch television,

and browse through the paper,

and eat steak,

and kiss my guys,

and remember my dad… 

and know that today is not like any other day.

Really.

Did you know that some cultures bury the dead in a standing position?  Others bury their dead in a fetal position?

Did you know that Casanova was a librarian at one point?

Did you know that cappuccino got it’s name from the Capuchin monks? (Because it’s the color of the robes they wore?)

Did you know that the speed of light is 186,000 miles per second?

Did you know that Greenland was named by Eric the Red?

Did you know raccoons always wash their food before they eat it?

Did you know that Sartre was cross-eyed?

Did you know that in the British Isles, they carve turnips instead of pumpkins for Halloween?

Did you know that people in the 18th century used to douse themselves with vinaigrette to masque body odor?

Did you know that Gulliver extinquished a Lilliputian fire by peeing on it?

 

I didn’t.

I have a bizarre lust for trivia– and the sad thing is, I won’t remember most of this list in a few days.

Borrowed. But entertaining.

The following was found posted very low on a refrigerator door.

Dear Dogs and Cats:

The dishes with the paw prints are yours and contain your food. The other dishes are mine and contain my food. Placing a paw print in the middle of my plate and food does not stake a claim for it becoming your food and dish, nor do I find that aesthetically pleasing in the slightest.

The stairway was not designed by NASCAR and is not a racetrack. Racing me to the bottom is not the object. Tripping me doesn’t help because I fall faster than you can run.

I cannot buy anything bigger than a king sized bed. I am very sorry about this. Do not think I will continue sleeping on the couch to ensure your comfort, however. Dogs and cats can actually curl up in a ball when they sleep. It is not necessary to sleep perpendicular to each other, stretched out to the fullest extent possible. I also know that sticking tails straight out and having tongues hanging out on the other end to maximize space is nothing but sarcasm.

For the last time, there is no secret exit from the bathroom! If, by some miracle, I beat you there and manage to get the door shut, it is not necessary to claw, whine, meow, try to turn the knob or get your paw under the edge in an attempt to open the door. I must exit through the same door I entered. Also, I have been using the bathroom for years – canine/feline attendance is not required.

The proper order for kissing is: Kiss me first, then go smell the other dog or cat’s butt. I cannot stress this enough.

Finally, in fairness, dear pets, I have posted the following message on the front door: TO ALL NON-PET OWNERS WHO VISIT AND LIKE TO COMPLAIN ABOUT OUR PETS: (1) They live here. You don’t. (2) If you don’t want their hair on your clothes, stay off the furniture. That’s why they call it ‘fur’-niture. (3) I like my pets a lot better than I like most people. (4) To you, they are animals. To me, they are adopted sons/daughters who are short, hairy, walk on all fours and don’t speak clearly.

Remember, dogs and cats are better than kids because they (1) eat less, (2) don’t ask for money all the time, (3) are easier to train, (4) normally come when called, (5) never ask to drive the car, (6) don’t hang out with drug-using people; (7) don’t smoke or drink, (8) don’t want to wear your clothes, (9) don’t have to buy the latest fashions, (10) don’t need a gazillion dollars for college and (11) if they get pregnant, you can sell their children.

Thanks, Bev!