NUCLEAR NOONERS

End shot, the ladies at work.

IN PRAISE OF THE CANCER CENTER

The Dixon Centre has as homey feel. There are donated handmade quilts on the wall, paintings, pieces of sculpture. From the minute you hit main reception, the staff are welcoming and friendly.

Each weekday, Heather and I make our way to radiology, me hanging onto her arm for balance, or jauntily trying to walk a straight line all by myself. I register with the receptionist and then wait for my technician to call me to treatment room 6. Once I’m there, throwing off my wig or hat, taking out my earrings, putting my glasses aside, the techs come to see what jewelry I have on for day. Then I lay on the big table with my head in a plastic cradle and a cushion propped under my knees and they fasten on my mask. I'm blind in the mask & I wondered how it looked. The ladies gave us permission for Heather to take pictures. Here is two minutes of my everyday.

Trying to find the head cradle

Down it comes

Clamped in place with cartoon canary x markings. Ready for my close up, Mr. DeMille.

The mask has been molded to my face. I cannot open my eyes or mouth when it’s clamped down. I can breathe though, and swallow. I know there are people who have to be sedated in those masks, but I suspect I have a reaction like famous autistic author, Temple Grandin with her hug machine. I relax instantly and get sleepy. And I trust those technicians. They’re careful and precise.  My anxiety level is at zero during treatment because I like them and they know exactly what they’re doing.

I had no idea about this neon marking! So far from my lay person concept of a big star-trek blast of my entire head!

I hear machine bits whirling, lights eventually go off, there are beeping noises. 90 seconds or so later, the techs come back and release the mask and I’m done for the day. I always wondered what it looked like and I didn't know that about this neon mapping part.

They lower the table & set me free to wobble off home.

                                              

PS...Although I write this blog to help sort out my thoughts and reactions...and for the joy of just writing, I write for you, too. Especially for anyone who is or has a family member or friend going through treatment. There are terrible cancers out there. Some of the treatments feel pretty brutal - but mine, right now, does not. Okay, so the monster mask is hardly a fashion statement but it's not awful, truly. I've always been skeptical of western medicine but I've  come to admire the special skills of my doctors, nurses and technicians. I find myself looking forward to seeing "my" ladies every day.

Eight treatments down, seven to go!

BACK OFF EDVARD

I complete the self-assessment quiz for Palliative care. It’s a zero to ten set of questions on mood, symptoms, cognitive ability, memory etc. My take is that Zero means Pretty Good Chief and Ten means, Just Shoot me now. Mine is a line of zeros, broken by a two for muscle weakness and a three for fatigue. Dr. J. remarks to the nurse that I’m in better shape than he is.

We talk about what my options will be when I need the unit. How quickly I can be admitted – or what kind of care is available should there be no beds immediately open. It’s dotting “i’s” and crossing “t’s.” Business. Like making a Will and Power of Attorney. Like doing taxes. They seem a good team, these palliative staff, and the conversation is punctuated with laughter here and there.

Later, I ask Wendy if I’m coming across like a lunatic. Do I sound like someone who doesn’t actually know what’s going on? Figure I’m a mite peppy, as cancer patients go, judging from the expressions on the faces of medical staff. Wendy says, “no,” she thinks I just sound like someone who made a decision about how to live with the facts. Later on, the oncology nurse tells me, “We talk about you here. Just in case your ears are burning.”

Today, after radiation, exhaustion hammers me. Heather has to wake me to go to my appointment with my GP and to shop for groceries. I forget to take my meds.The vertigo is escalating by then, there’s a familiar bee-buzz of confusion in my head. My knees feel weak.

While putting the food away, I go through a couple maneuvers to find a vase – move a big cookie jar, pull the vase out, put the jar back – and suddenly, I am doing my version of Edvard Munch’s “The Scream”. Literally, I screamed. I cannot believe I can put away all that stuff, I'm ready to fall down, utterly overwhelmed and almost unable to stop myself from hurling something viciously across the room, just to hear it break. The frustration and rage pass in 30 seconds and I stand there hanging onto the counter in horror.

Wendy rounds the corner in shock and takes over, sending me to take my pill and sit down. I feel as embarrassed, shocked and ashamed as if I’d projective vomited across the room.

There were long stretches during chemo that I felt like that, but for weeks and weeks now, nothing remotely close. Just peppy little me, the fool on the hill, truly calm and cheerful and enjoying pretty much everything. Wendy and Heather take it in stride immediately. I am shaken to the core and can’t stop apologizing.

These past weeks have been some of the happiest of my life. I know. It’s ridiculous, isn’t it? But just try being surrounded by so many loving people and trying to feel down or sorry for yourself. But today was a little wake-up. Just a small reminder that things can change. There may be days when being unable to move quickly or keep good focus make me just a little less Zero on the happy chart and a real bitch to be around.

I know my friends would understand but - Oh please, let no one have to witness those moments.

PLANTCIDENT

Look ma, no hands! Get up in the morning, the room appears to be moving far less rapidly to the right than usual. I walk. I don’t stagger. Well…hardly. I’m bouncing through my day…shower, dress, treatment, consultation with The Dave (now my oncologist's official name) in high spirits. Enjoying my increased mobility.

And The Dave is happy with treatment results so far. The symptoms are less severe and he’s given me a “maybe not” when I mention it’s helping “until the next thing comes along.”

Maybe not. Maybe not a next thing…for longer than I’d hoped.

Alright then! I grasp Heather’s arm less often, feeling as puffed up with pride as I must have when I started to master walking  the first time. Hands off! I’m doing this myself!

It’s a good high energy day.

But towards evening, the vertigo increases and so does my level of denial. Coming in from the balcony, I move too quickly and lurch into our enormous philodendron – sending it flying across the kitchen. Earth spews over the floor, table, standing fan, chairs – gives off a rich earthy smell. It’s the kind of smell I love although not necessarily one I’d want issuing from our table and chairs.

With the room having resumed it’s usual merry-go-round motion, I scrape earth up with a dust ban and start dumping into the pot, only to realize the pot is broken on one side and at the bottom and instantly draining out the holes. I lug the big guy to the balcony and somehow manage to bully him into a garbage bag. An hour later after wielding mop and broom, dust vac, and cleaning cloths, I’ve managed to get up 95% of the dirt. Too woozy to get it any better, I write Heather a confession of clumsiness and leave it on her bed. Sweet dreams. Your roommate is a danger zone.

This morning I have broken nothing so far. But sitting on the balcony, I spot two sea gulls on the roof opposite – and as I watch them, they morph into 4 seagulls. Not a problem! All I have to do is close my left eye and the become 2 again.

Funny part is, as weird as symptoms get and much as they are an irritation – some part of me shrugs and says, “Damn! Now isn’t that interesting!”

Olivia comes to visit soon. One Olivia I hope.

(She trails down the street, ringing her “all is well” bell.)

BEAUTIFUL BLUE EYES

Speaking of heroes (I know. We weren’t.) I have a few….

It’s an odd little list and part of it includes, Gandhi, Jim Dyson (of Dyson vacuums), some prisoners and prisoners who have returned to “the world” and a young woman who was once my student assistant. Let’s call her Leanne, just for the hell of it although her real name is more beautiful than that…Leanne Blue Eyes is how I think of her.

Leanne is a passionate and natural scholar…quick-minded, political, engaged, funny and compassionate. She is an attractive young woman, who has (since her graduation) showed up to visit looking trés fashionable & big city. Scholar, art maker, entrepreneur, teacher. She’s a little whirlwind.

She also happens to have cerebral palsy.

I was astounded by her from the minute she started her job. In spite of the unruliness of CP, I watched her shelve and pull down heavy books, process loans and returns while checking fines and over dues on our user-unfriendly computer system – often with a line-up of none too patient students waiting. The College offered funds for any “special equipment” but Leanne didn’t seem to need any. She was one of the best on staff…filling in when others couldn’t make it, always willing to help, never a complaint.

In her student life, she took on challenging courses – physically as well as intellectually challenging. She has attitude and grit. I marveled at how she adapted to the symptoms of CP, seeming to almost effortlessly control them or even ignore them.

I liked her personally, which was true of most of “my” students.

Now, as I cope with the remaining vertigo – and nerve damage in the soles of my feet that make if feel like I am walking on unbreakable bubble wrap; now, as I lurch into a wall here or there, or stumble over nothing at all or turn my head while standing, only to realize my poor confused body thinks it is supposed to fall over in the same direction, I am beginning to have the tiniest inkling of how quickly a person will adapt.

I mean you can sit there feeling a helpless blob or get up and use what you’ve got, right? And I often find humor in it, too.

I do things to torture my friends, like climb up to get a high curtain rod placed. Hey. I’m still the TALL one. I know they are near having coronaries watching, but I know what I can and cannot do…and I like to tease them.

Thank you Beautiful Blue Eyes. How you doin’ out there, girl?

LETTER TO MY BODY

Dear Body, faithful friend…

You have been my strong and patient companion all these years. I understand why, finally, between the pulling of Spirit and the bullying punches of relentless Ego, you have begun to flag.

Ego shoved your feet into spindly heels and pointy toes, hated those feet or your nose, ate too much, starved for vanity, applied chemical spills to your head. Smoked. Drank. Ego, that harridan-slave, pretender to the throne, painted you, shoved you, made you walk when you needed to rest and starve when you needed to eat - treated you like a dumb stubborn beast.

Even Spirit, your better friend, abandoned you when she was hurt, leaving you in the wrong embraces of strangers, or empty and still, near-lifeless.

Spirit never stopped wanting more. Ego screamed you down – you, the one perfectly attuned to the real.

You have been a warrior and a joy and I thank you for your still-brave efforts. You have deserved better.

Now you get lentils and blueberries and to watch the dawn - and we work together.  Ego is banished to the cheap seats (but still managing to bawl loudly for attention) spirit is finally seeing and hearing you.  We treat you with respect and gratitude.

You brought such gifts…love’s touch, the passing of wind through my hair. You smelled the apple trees and buried your face in a dog’s warm fur. You connected everything, knew everything. You took grave punishment and rallied a thousand times. Thank you for my hands and pleasure of making. Thank you for the sights my eyes have seen and for music and voices and sure instincts. For all of that.

And now, late, I do not regret – but am astonished at your resilience.Stay a little yet, my weary soldier so that we can pay our overdue respects? 

Ego sits down.

Spirit stands with you.

We bow.

AND THEN THE CHEESECAKE

I am writing early in the morning and I’ve cut my medication a little, so that I won’t run on like a speed freak.

I will attempt to remember my writing manners and take the time to write a short blog.

The jungle drums have been beating lately and a stream of visitors pass through our place each day.

Too short visits to catch up with people I’ve known for 30 or 40 years but haven’t seen for that long.

My friends astonish me. Not only because they make so much effort to come but because it turns out life has tested us all so much. The stories are unbelievable  – and at this moment, in this situation, it feels like we are in the eye of the storm. It’s quiet and kind – and there’s a lot of laughter.

Everyone rises to the occasion. I won’t speak in euphemisms about this disease – and I watch or listen for the momentary catch in someone’s throat – and then watch as they rise above, man and woman up, understand not to play “maybe there’s a miracle cure.” We say “death” right out loud and stand our ground and it helps me so much not to have to pour energy into that dance of denial for the sake of protecting them.

This is a wonderful time for me. One of connection and reconnection, with all the little turds of disappointment, judgments and hurts I’ve clung to, floating merrily out to sea. I live almost constantly in the moment – a feat I could never accomplish when a stretch of tomorrow’s worries were with me. Right now is a wonderful place, but I suspect that through most of life, we are meant to be caught by this rushing world and only to surface long enough into peace to get the inkling that it’s all illusion.

If there is one word that sums up right now, it is “gratitude.” For the daily support of Wendy since day one. For Heather returning from the north and moving in…fitting in like the last missing piece of a puzzle. For so many sincere, strong people flowing back into my life. For sun rise and sun set and watching the gulls wheel in the sky before a weather change. For cheesecake and lentil stew and Heather’s blueberry oatmeal. I think you could hand me a child’s marble and I’d stare at it like it was the holy grail.

Today, I start treatment at 11:00 and I’m not scared. I know the Dave the Oncologist has plotted his map of the galaxy of my brain and done his best. And tonight, for supper, we have lots of wonderful healthy left-overs for supper (and a bit of cheesecake).

I’m picking up my bell and strolling through town, crying out, “All is well.”

NOT THE HITCHCOCK MOVIE

Hello lovelies!

Notes of the state of my current functionality:

1. Floors have developed curious dips and bumps – rising up suddenly or disappearing as I take a step.

2. My feet are on the floor, but rest of me can tend to lurch a little alarmingly at times.

3. Turning my head when not seated is a recipe for a really good stagger.

4. I am stunned to realize how fast you can learn to cope with this stuff – Hands flat against the shower wall to make a turn to reach for the soap, one hand on a wall to walk – and (my least favorite) clinging to a friend’s arm in open spaces. (Actually, I find that comical at times. Clutching an arm, slowly going from point A to point B with cheery determination not to land on my ass. It reminds me of old lady cartoons.)

The vertigo is having lots of vertifun with me.

The headaches are a little fierce at times, but dim with the meds and enough sleep. I can’t multi-function or listen to cross-conversations without feeling like I have bees in my brain. But I have good spells during the day and am not only coping but getting lots of good time with friends.

The radiation will stop the symptoms – and cause others, so I may go quiet for the first week. This will be next week, sometime.

My oncologist, Dr. Bowes, now phones and announces himself as, “Hi! This is Dave Bowes.” Makes me grin. He’s such a great guy. So, Dave is now mapping treatment and I should start next week. When the hospital told me that, it surprised me. Stupidly, I had pictured the radiation as a kind of generic blast and it had never occurred to me that Dave had to sit there with my MRI results and plot how much radiation and where. And whether or not he succeeds in keeping the damages down, I’m happy it’s him doing it because I know he’ll do his level best. I trust him.

Heather is in! Mostly. Many bits and bobs to come – and still a lot of sorting out to do, and I now have a sort of little bachelor apartment in my former studio. Half studio, half bedroom – you could not do the tango in here, but it’s cozy and I love having Hurricane Heather in the house.

Just a short one today. I’ve had to squeeze so much apartment clearing and visiting in lately that there hasn’t been time to write much. But overall, it’s been joyful  and how lucky am I that I have this time to be with my friends and loved ones – have time for us to say what we need to and laugh together. I have a repertoire of awful brain cancer jokes that I’m very proud of by now. There are serious moments – those lurk. You can’t help it. But all of us are determined not to waste anymore time on sadness than can be avoided.

Now, if I can just make it to the lavender farm in Seaforth, I figure it’s as perfect a life as you could hope for.

I know I owe letters – and soon, honest!