GOODBYE

Goodbye. Wednesday morning, Home Care will bring a hospital bed, in lieu of a bed in the  palliative ward. Things are going downhill fast. I won’t get into it – but I’m pretty much at peace and not in pain. I have received your messages and emails but due to deficits increasing, it is almost impossible to reply. Let me say I spent two hours today, in my mind, thinking about you all, being so glad for your presences in my life. Thank you so much.

Soon it is time to die – a few days, a few weeks. I will not be writing anymore but wanted to thank you for being such amazing support through all this. I love you all. I am letting go – but keeping a place for all of you.

Be kind to each other and yourselves.

SPEED

Morning! We’re getting there a bit sooner than I expected. The left side paralysis, the unbalanced walk, the speech and cognition problems, exhaustion etc. – all speeding right along, thanks.

So I’m getting heartfelt and caring requests and emails. So sorry – but between difficulty with words, new emergencies and starting to pack suitcases for the possibility of going to palliative care unit – messages have to wait. What likely seems simple and straightforward to you, is a 2 hour task to me, right now.

I have an appointment with The Dave today and hopefully see the palliate team soon.

May a CT or MRI in there somewhere.

Sorry to be so damn rude – but there isn’t a lot of spare energy right now. I DO get messages though. Much appreciated. You are all in my heart!

LEFT

10:41 a.m. Tuesday

Left eye – double vision constantly now. Heather is going to find me an eye patch. Black, piratey- might as well have some fun! Steroids are at 8 mg a day now – not that I notice much different. About a week and a half a go my speech started to slur. Now I have paralysis on the left of my face. The Dave speculates (on the phone) that the cancer is moving into the nerves in my jaw. So. It’s getting quicker and Dave thinks I should see him (Friday) and have a visit from a couple people from the palliative unit . Tick tock.  

You found a way to get here to see me – found the money, raised it, made time to get away and truly you want to see me. I know.

I will likely not resemble your memory of me and I spend hours a day living in the place (as Robbie Robertson wrote) where a radio is tuned to static. I watch from a distance as the Carnival parade passes by – with absolutely no desire to take part. It’s peaceful here. All that I used to build the character in my life movie – looks, skills, abilities, flaws, personality traits – all of those have turned out not to be me. All so much flickering light and shadow, all illusion.

I used to catch a glimpse of this. Now it’s just plain obvious.

NOT A SEIZURE

Two nights ago, I started out for the living room, pushing Rodney. It was about 3 or 4 in the morning & I’d woken up wanting to sit in the living room. About 7 feet from the bed, suddenly, my body went into violent tremors and I could feel ALL my strength leave. I remained conscious enough to pull up on Rodneys bike brakes and slam into the hall wall for support. Meanwhile, Heather, hearing all this, comes screaming out of her room just in time to see me slide along the wall desperately reaching for the big leather chair in the living room.

Seizure, I’m thinking. This is the worst – but I’ve had two similar incidents recently. Surely this must be seizures. The Dave is on vacation this week, but his nurse answers my message and instructs me to see my GP or go to emergency. Today. Getting serious now. Lucky for me, Margaret is not yet on vacation, so I book an emergency appointment. She quizzes me: One side? Both sides? What was I doing before it happened? Did I stay conscious? Heather – how did it look to you? Margaret is a great GP - not only that, her late husband died of brain cancer. She has lots of experience – professional and personal. She decides it was “progress of disease” or a blood pressure/heart rate problem. Moving a  little too fast from sedentary position to movement. My BP shot up, and my heart rate couldn't keep up.For a year she monitored her husband for seizures but it was never that – more like what I have. She bumps my steroids up to 8 mg.

The next night, for about 6 hours, I keep waking up with pain shooting up my legs. When I finally get out of bed, take my meds and make a note, I am astonished that my handwriting if clear and legible. First time in months and totally unexpected.

Next?

SIMPLE

I have been pondering my demise since Heather mentioned death a couple days ago. You just can’t keep it in mind while you are still above ground, stumbling around and – more or less – living your life. It drifts just outside your awareness. Really just a concept.

Lists. Who should have what small remembrance? Write it down. Do the work.

Yesterday, as I was ruminating, it occurred to me that Heather moved in sometime in March, just before radiation treatment. Then, the symptoms were fatigue and vertigo. Since then, I’ve added quite a few. It seemed to me that because it’s all so gradual, I am probably not a good judge of my own condition, so I asked her, “Objectively – am I worse?” She thought a second and said, “yes.”

I was trying to assess whether or when I had to check in to Palliative Care at the hospital. Right now, other than walking around, I do very little on my own. The rare occasions when I leave the house, Heather has to bully Rodney Roll into folded position and drag him up and down flights of  stairs – to me a gruesome looking chore with Rodney trying to unfold several times each trip. Then there are the pills. Did I take them? Have I eaten? Did I check my messages on the phone? I’m sitting on the couch. Inside is the woman I was. Surrounded by a kind gauzy haze which prevents thought from becoming action for hours – or days. Heather doesn’t think it’s time to go yet. And I’d miss the marigolds. Hang on. Do my best, I guess.

I suspect treatment has caused some damage to my Amygdale – that part of the brain that handles anxiety and emotion. I am even. I have a sense of humor. I laugh and feel happy. Things make me sad. Nothing, however, is over the top. That emotional, anxious me is quiet under the gauze. Who would have even thought that could be a relief?

Priorities shift. Illusion was important once. How I saw myself. What I looked like. Now, getting ready for bed at night, it becomes clear how much I depended on it all for self-definition. Hair, jewelry, makeup, a certain way of dressing. One by one I take it off – and there I am: a Caucasian human, of female gender. This is always what I have been – only it’s clear now. I am getting used to the simplicity of it.

FLATIGUE

6:31 a.m. Friday

I’ve been sitting on the balcony for an hour. Gray sky. Rain dripping noisily down the eaves pipes. The odd bird trilling or chattering. People starting to get off to work on foot, in cars.

As usual in the morning, I am particularly dizzy and unbalanced, my vision is double – but other than that I feel calm and lucid. Time for the steroids, I guess. Heather has been watching my med times lately and she is concerned about the ongoing cutback – one half milligram less every 10 days. In fairness, she had to witness the last time I tried – when I was unable to eat, throwing up and lurching about like someone made of spare parts. I tell her that everything I’ve read suggests you wean off them as soon as possible. “Even if you’re dying!?,” she bursts out. Well, yeah. If you’re dying, increasing them might be the only possibility. Funny, I know that I am dying – but it’s somehow gotten to be a notion that’s out there somewhere else. Her outburst reminds me.

I like this aspect of Heather. She and I tend to be blurters. I like that she can say something very bluntly and not be upset by it – or worry about upsetting me. There is a kind of stoic acceptance of what is simple fact in this house, on both our parts. A relief from denial and sadness – just is what it is.

I published a fairly grumpy entry last time. I was frustrated because I felt that, in trying not to get all histrionic about my “condition” – no one was hearing me. People, I know, want to think I'm fine. With the exception of Heather, Wendy and the medial professionals, you hear from me mostly on the blog. I know I sound “normal” and it fools people. When you read an entry, I have edited five times to pick out wrong words, mixed tenses, dropped words and other misspellings. Even then, I have probably missed something.

I have tremors now, in both hands. I can barely sign my name. The last couple of days, H and me have been painting lace earrings. I got up yesterday to do bead work around the edges of a pair I like and it took five times as long as usual. I had to steady the tremor and close my left eye to see the beads clearly. Still, I persevered. Five more crystals on the ends, to go. Life goes on, right? For now.

I apologize to the dear friends and family who want to get in touch. I am very calm – but when the phone rings, it sets something off. I sit and scream “F*ck OFF. Leave me alone!” Or something equally charming. This is because I have about two watts of energy to my name – and I’ll be down past that by the end of the call. They ought to have another name for radiation “fatigue.” Like, “flatigue” – or “total exhaustion”. What energy you have, you begin to guard like a dragon guarding jewels. This is very disconnecting, of course – and I’m working on trying to do better – I’m a regular at the rehabilitation center and I’m trying to get into the brain injury clinic. Oh yeah – and making earrings. Talk to you soon. Hopefully. Time for meds.

CHCHACHATTER