Several hours ago I composed an elaborate blog post. It was stunning. Awards were coming my way no doubt! No, I did not accidentally delete it, however, you still don’t get to read it.
Not much more than and hour later it hit me. My post is NOT working. I created a chaotic mess. The written equivalent of that handmade crochet blanket. That one you must
lug around from home to home cherish forever because it was made, with love, from the skein remains of Grannie’s last 47 works of art. Fortunately, the words can be reworked.
– Take 2- Action
During the week I pay close attention to my energy level. I’m at my most active between 10:30- 1:00pm. Like clockwork at 2:30 my plug has been pulled out. Knowing that sleeping curled up in my cozy bed is best, sadly it does not always pan out. On comes the television.
Another round of brainlessly watching Netflix or HGTV shows that don’t really interest me. This is not how I should be spending my time.
I’m not going to take up crossword puzzles or read sections of SW’s unabridged dictionary; I’m sticking with TV watching. TV watching with direction.
I’ve started a small, manageable list of 10 American classic films with the criteria: I have not watched the film before; and it is on one of four (one, two, three, four) online lists I deemed credible at 4:27am 8-days ago.
Here goes the 10:
- Breakfast at Tiffany’s
- Citizen Kane
- Gone with the Wind
- The Graduate
- Miracle on 34th Street
- North by Northwest
- Singin’ In the Rain
- Some Like It Hot
- Wizard of OZ
Slowly I’m working through them. A few are great, and others not so great.
What ranks high on your list?
Thanks to my public library I can view the Classics above for free. Lucky me!
“Kim, things are looking good, in both CNS (brain) and body.”
Relief. With a deep exhale I crumple towards my swollen belly. Hunched over, I pause and take a few breaths. In (one chimpanzee)…out (two chimpanzee); in (one chimpanzee)…out(two chimpanzee).
Thrilled, yet over come with exhaustion, I could only mutter that is wonderful.
A great conversation followed between the 4 of us in the room, doctor, nurse, husband, and me. Concerns were expressed. Goals were made. Action plan set in motion – that is as set as can be in Cancerville. My course will continue with 6-week scans, evil-decadron, of course alectinib, plus a handful of other medications to put into this body of mine.
Today, 20 hours later, parked at my dining table, a slight smile barely peaks out of inflated cheeks. Worry, sadness, depression, stress, anger, frustration, – intense feelings stowed away in my body dislodge. As if I were submerged in a pool of soothing warm water, my baggage releases. Plummeting like rocks to the bottom. No longer burdened, I am weightless. I am at peace.
Awake at 5 am this morning and out of who knows where, I’m the spider! hit me like a bolt of lightening.
Remember that itsy-bitsy-spider that crawled up the water spout? Then rain. Sun. Another crawling attempt. That is me in my current state.
My noggin remains a ball of instability. Trapping me in a loop of headaches, hospitals, steroids, insomnia, and scans. Barricades making it feel impossible to squeeze in living and enjoying life.
Finding my way up the spout again.
Kiln cleaning gear.
Crafting it up with some whimsical stained glass projects. Finally, cleaning & priming my kiln shelf after its last firing countless weeks ago. I’m creeping along which is far better than not.
How 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!
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! I 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!
“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.
San Francisco to PDX
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.
Drive across The Great Forty Eight starts now!
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.
However, 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.