Worth Your Weight in Salt

spicedrawerHow is it possible that my sodium level is too low?

I don’t understand. I’m a salter. Not an excessive salter. This home cook absolutely adds a generous pinch or two to dishes while preparing them.

Evidently that is not sufficient for my body.

Avoiding another round of doctor ordered salt pills is high on my list. Whipping up  a batch of Salted Chocolate Chip Cookies before my next set of labs is a no brainer!

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Hello Stairs!

I did it. A few times even. I’m going up and down stairs to my basement.

Sounds pretty insignificant but hold your horses! It’s a big darn deal to me. Here is why…

Clothes get clean in the basement. Relying on someone else to wash and dry your garments is not for me. I like that I can carry* my delicates downstairs and personally program the washer. Control freak? Perhaps. I like taking responsibility for how things come out of the big white boxes.

*Let me elaborate on carry. Strength and balance remain impaired. My right hand firmly grasps the railing while left carries the basket by looping the handles around my forearm. Carrying is one way, down only. The clean, folded clothes need to be lugged upstairs by SW.

Glass space – oh yes!  kimsfusedplateI have this great glass studio set up in my basement workshop. It’s great when you can access it. I still need SW to do the heavy lifting. I can live with that for now. I have stashed a few small notebooks around for me to jot down an idea when the unpredictable creativity starts to flow.

Cozy couch and monster tv (when compared to my laptop) live downstairs. We’ve not hung out for sometime now. I miss them both. I see takeout and a movie happening in my near future. Being able to walk upstairs after the whole shebang is important.

Cheers to getting around your own home!

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Craniotomy + 20

IMG_4171“How are you doing?”

“I’d love to be able to answer that question. Can you give me some options? Maybe I’ll simply pick C, it seems safe. Easy. I’m also very okay with changing my mind 10 minutes from now if C is a bad choice.

That’s pretty much how I’m doing.

When 3 different individuals on your healthcare team call you within a 24-hour period of time, you know that shit just got real. When all 3 of them know that you are on vacation, you know that shit just got real and your vacation is over.

“You can be home Sunday night, right? My office will call you on Monday to get your pre-op appointments set up. Plan on having surgery Thursday.”  Just like that – it happens. One moment you’re laughing at happy hour; the next your complaining about having to go home for brain surgery.

Surgery went well. Felt about 5-minutes long from my end. I have a wicked scar. I stopped counting staples landing in a jar when the 25th one went down with a ‘ting’. It was determined Radiation Narcosis was the culprit of most of my brain swelling. I remain on Alectinib which serves me well.

For now my energy level is quite low.  I spend much of my day reading or napping. Soon I hope to get back to my art class, writing circle, and of course other forms of mischief.

 

 

 

 

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What Day is it?

San Francisco to PDX 

 

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Friday the 6th went pear shaped.  Happy hour fun with Genentech friends was interrupted by two plan changing phone calls from my Care Team.  I was summoned home.

Today, Monday, I sit waiting to get my schedule.  Pre-op appointments and brain surgery are on tap this week.  Stay tuned.

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Day 2 at Crater Lake

Gaining elevation as we travel towards Crater Lake the air was drastically cooler. 

“We will see some snow,” SW says with confidence. 



You call this some?  

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Adios Portland

Drive across The Great Forty Eight starts now!  
   

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Days Like Today

Days like today, I often try to “do”.  Why?  Do I like to torture myself?

Waking up feeling a few steps shy of miserable, I immediately cleared my calendar. That one engagement, my weekly writing circle that brings me immense joy, needed to be crossed off my list.

Finally, I am learning when I need to say no to my own wants and desires. Rest when I need to rest; be active when the body is in good working order.

This week is scheduled to be my last week on decadron/dexamethasone (dex).  I’m on a fraction of what I’ve been on for the last several months.  My body screams, equally from withdrawal and discomfort caused by the steroid.  I have a textbook love/hate relationship with dex. Love that it controls my brain swelling and hate what it does to the rest of my body.

like Oprah I love breadHowever, today I did good. I allowed myself to do very little. Pretty much I made myself lunch. I’m not going to beat myself up for it later either. I’m not lazy. I’m not unproductive. I am simply Kim, who happens to feel like poo today.

 

…and honestly the lunch was quite lovely.

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Committing!

Months and months ago SW proposed. “Kim, when I get my next sabbatical what do you say we drive across the country and back?”

Like most girls, when a person pops the question, I got all flustered! Clusters of butterflies dancing in my tummy. Uh, of course!  Yes! Yes! Yes! How long? Where should we go? Can we go to Santa Fe?  I want to see Niagara Falls! The Black Hills… YOU gotta go to San Francisco! Let’s do it!  Oh…I love you.

Then the Kim Crumble.

An era of one health issue after another, much like the Roman empire I was in ruins.  The evil seed of doubt, planted in my brain. Will I be alive to make this trek? This invasive specimen, grew. Psycho-killer-slow-and-steady undetectable, but you know, you know, it is lurking, hovering in the shadows.  Ready to pounce. My dinged-up armor, a composite of thousands-of-dollars-worth of MRI’s & CT’s and brilliant specialists watching me like a hawk, provided me with mediocre protection at best.

I needed recovery time.  (Refer previous  post)

Simultaneously…I wish I was making this sh!t up.

The Campbell Driveway was missing a major component.  Our brand new Dodge Ram Promaster, AKA: Vanish (No joke, it is her name!) was gone!  Vanish, our to-be home on wheels scheduled for some major reconstructive and cosmetic surgery was already putting a kink in the schedule.  She had a roof leak.  Not just any leak, but a leak that took 4 different trips to the dealership to repair, totaling over 8 weeks.  Ugh, times two.

Morale at home was at an all time low.  Me feeling like a pile of rubble, too exhausted to drop the “are you seriously effing with me Dick Hanna Dodge?!  I have cancer!  Fix my blankity-blank-BLANK van!” Equally frustrated SW maintaining his optimistic & stoic stance in public yet routinely popping antacids behind closed doors. Both of us avoiding the topic knowing a full system failure might ensue.

Dreaming. Wanting. Fantasizing. Wishing. None of this was happening. Glimmers of hope in my eyes were gone.     …But not for long!

“I still don’t want to perform surgery, Kim.” All time favorite phrase from my neurosurgeon.  Whew!  I prefer to suffer the effects of Dexamethasone over a craniotomy too.

“Vanish will be ready for pick up tomorrow,” SW relayed to me, “I hope the damn-van is actually repaired!” Home testing the leak was easy. Inspired by my team of brainiac doctors we applied their highly refined evaluation method… watch and wait, followed up with more watching and waiting.  Turns out, this is not so scientific and exact.  Standing in the van, eyes shifting from roof to floor, evaluating if water was present during a typical PDX rain event.  Eventually, I got cold.  Called it good-n-sealed.  “She’s stable!  I’m out.” An abbreviated chuckle escaped.  Please tell me the docs are much more sophisticated. Pretty please?

A few more course corrections later and moods evolved for the better. The ‘Fog of Meh’ lifted. Holy moly, we need to get this show on the road!

IMG_2862Now the fun!  Cramming in months worth of construction into half the time.  Mapping out our 6-week adventure Across the Great Forty-Eight.  Scheduling doctor appointments galore. Trying to find driveways to park in (showers to use?).  How done do we need to be before our May departure date?

 

Please add your 45-cents. Where would you go on a drive across the US?

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“This one is Just Right”

Armed with a to-go cup of coffee with a heaping of milk I hollered, “I don’t know how long I’ll be; wish me luck; I love you!”

Into the luxurious 2015 loaner car I plopped. Heated seats. Heated steering wheel. Automatic transmission.  The vehicle was nearly perfect.  I hate the head rest – a consistent complaint of mine in autos of all sizes. This will not be the case for the chair I intended to purchase today.

Truth is…

I’m struggling with building reserves. My body craves to be restored. Forcing myself to take the time I need is a battle. I’m semi-successfully managing the bare minimum. “Why is this happening?” gets tossed at me periodically. “Is there something your doctors can do?” Reasuring my community, of course they are taking care of me – Alectinib is managing my cancer burden and Decadron is managing my radiation necrosis.

My body is beat up; I show it and I feel it. What’s wrong Kim? Attempting to soften my eyes of steel, I grin softly as I calmly remind I have advanced lung caner, this is what it looks like on me, right here, right now.

Dissatisfied with lounging between bed and couch I set out for a chair. Investing lots of tush-time to chairs across the city – various shapes, sizes, fabrics, gadgets, and gizmos. I went home not owing anybody money.

Eventually…

FullSizeRender-24The solution presented itself later that day.  A petite, easy in/easy out, inexpensive, ready to take home and assemble chair and foot rest from Ikea. Hooray for Poang!

I’ve claimed ownership, well, co-ownership with Yam the cat, of this great little chair. Its worked wonders on my outlook. I’m sitting upright. I’m attentive. I can easily get up and out. Peacefully my body is rebuilding. Mentally I’m slowly accepting my need for downtime.

 

 

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National Radon Action Month

January is National Radon Action Month.  Good thing I found that out from a good friend or I would have gone through the whole month unaware.  Yes, I know, I am terrible at staying informed or connected via social networks.  I check them periodically at best.  Email though – I’m great at checking in the morning.  Rereading that last statement makes me think I’m not so great at checking email either.  Enough about my technology deficiencies.

Here is a link to Oregon Health Authority discussing Radon.

Here is a link to US Environment Protection Agency  discussing Radon.

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