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

ONE BUBBLE AT A TIME

5:00 am. Cool, breezy, damp after 24 hours of almost non-stop rain. At 4:00 I am sitting on the balcony dressed in PJs, and my blue velvet robe. I have a fuzzy pink blanket over my head and shoulders. The plants are asleep under miscellaneous pieces of patio furniture and plastic covers so I’m watching the sky lighten slowly to blue. There are big parking lot puddles, floating green leaves. The air smells clear and fresh.

This is an optimistic morning – somewhere in-between “side-effects” grabbing hold and spinning me into the cosmos and steroids making me feel…. I don’t know how to describe it…as if, I guess, my head was full of white noise. I start the shopping list for later: OJ with pulp, bread, eggs, avocado, paper towels and so on.

Now, I do one twentieth of what I would have on  a “normal” day once. And damn proud of it, too, if I do say so. Adjustment is a long process. Not only do I have this picture of who I am to tinker with, I meet a fair amount of resistance from friends and loved ones. We all project a little story on ourselves and the people we know – we cast ourselves or them in a certain role. Strengths, weakness, type of character – what role they play in the movie of our lives. I have often been perceived as strong. Stubborn enough to outlive everyone. To some people, I am more symbolic than real. When they see me “diminished,” the shock is clearly visible on their faces. They are shocked, or sad. I know the look, I’ve seen it in mirrors a number of times.

Still, there’s What I Was and there’s What I am. Underneath the brain hiccups, hiding behind new disabilities is the same person. A person who imagines singing plants and laughs at inappropriate jokes and who is stoic much of time. A friend of Wendy’s, a very wise astrologer, once dubbed me a “Namer” and that gets me though a lot. Although change is frustrating, there is a part of me always watching, quantifying, naming the changes I go through. Here’s that Mr. Spock thing again. I find if “fascinating” observing the effects. I make notes. I’ve always been an introspective person too. These days, I’m introspective (or cognitively impaired) in little hiccups. I rate my days by percentage. A good day is 60 %. Hell, I’m no over-achiever at this point. The physio ladies, in assessing me and recommending Rodney Roll, have already magically improved the grade.

I’ve been thinking about making a piece of bead embroidery lately. That could go on for some time, stuck between thought and action. (Remember the sweater I didn’t hang up?) I’ve have been very cautiously observing that the nerves in my feet seem to be regenerating – maybe. A little.

One step at a time, one burst bubble in the bubble wrap at a time.

MORNING CONCERT

Creativity, I have recently discovered, is not dependent on ability, while the opposite is not true.

Lose the skill and your Muse is still there filling your head with all kinds of whimsical notions.

I sat out on the balcony this morning, in the rain, thinking about how the balcony plants always seem to be in song. From there, it was a short trip to imagining what each, according to color and nature might be singing.

The pink & yellow Petunias: "Ode to Joy"

“Conchita” (our red tropical): “Malaguenas”

The Million Bells: “Mocking Bird Hill”

The flame plant: “Flamenco Arabe”

Marigolds: “Jeremiah was a bullfrong”

Impatience: Vivaldi – “Spring”

Quiet the little riot going on on the balcony. Morning all!

NO RAGE

5:57 a.m. The sky is already blue and clear. I make my usual morning trek to sit on the balcony and visit the pot of marigolds. Early mornings are sometimes more lucid times of the day for me. I haven’t taken meds yet and my mind is not yet floating vaguely somewhere in space.

I’ve tried to describe the feeling I usually have: “foggy”, “woozy”…. But those words don’t even come close. My mind is not exactly with me. It takes enormous force of will to return to the physical and maneuver, to focus clearly to do any task, one tiny step at a time. The notion of multitasking (a scientifically proven failed technique, by the way) is hysterically funny to me now. Even getting up from a seated position is a series of individual steps – place my hands,  push to upright stance, stand still until my balance is safe and I have a handle of gravity, take a first step, pay attention to furniture or objects that might jump out and attack me, fix my gaze firmly on my destination.

I sprained my ankle not doing all of this. I walked across the floor and straight into the runner on our rocking chair. For weeks now, my left foot has been swollen, purple and black. That’ll teach me! The rocker now sits pushed over to the far side of the living room. Bad rocker!

Yesterday, I was, as Judy Tenuta, says, “bloated with self-esteem.” I gave myself a B- for filling a garbage bag with clothing for Goodwill and making two salads. An A+ day would have been one of two tasks AND getting dressed and putting on makeup. I have stopped comparing Before and After now and begun to accept my limits. Today will be a A+ because, Heather, Rodney Roll and me are headed for rehab – where they will no doubt torture me with repetitive balance exercises. And, as my handwriting is now so spidery and awful, I am going to start practicing printing the alphabet today, as well. Let’s have a little round of hope for brain plasticity. Modest goals. Small recoveries and victories.

----------------------------------------------------------------------------------------------------------------------------------

I’ve been thinking of Dylan Thomas’ poem to his dying father: Do not go gentle into the good night, Old age should burn and rage at close of day; Rage, rage against the dying of the light. I quoted this to Heather last night and added that I felt nothing like rage. I’m noticing a slow softening. It’s a quiet feeling – not an unnatural feeling at all. If you are healthy, or young and ill, if you are curable, maybe then rage is appropriate. It’s been 11 months now for me. Technically, three of those months past my predicated expiry date. Not a good time for that sad and useless cry of life is not fair. It’s a good time to visit Marigolds.

 

RODNEY ROLL!

For weeks now my balance has ranged from comical (picture a baby trying to balance on its feet while ignoring a load in its diaper) to downright dangerously precarious.

Up go the steroids (and all their ugly little side-effects) – but still not a high enough dosage to actually have more than minimal impact on the drunken stagger. But now I have Rodney Roll.

Weeks ago, I would have announced that has joyfully as telling you I had to get ugly black lace up orthopedic shoes. But after they tortured me with a cane at rehab and then let me try a Rodney, I’m here to say that yesterday, when Heather brought Rodney home from the Red Cross, I moved around more in one day than I have for the past month. I can walk a normal human adult speed! I can walk backwards. I can turn corners! I felt like I had lost a 100 pound weight off my shoulders. I was downright cheery.

I’d had no idea how much this particular disability was depressing me until it eased.

Here’s to simple, well-designed technology. Let’s hear it for oar locks and simple computer applications that don’t require days of learning curve. Let’s hear it for wheel barrows, good strong tools, my little triangular bead pick up thing.

OUT OF GAS

It’s 5:00 a.m. Still night-time cool and damp but the sky is light. I’ve had roughly four hours of sleep – the usual amount when I’m taking steroids. I’ll stay up for a few hours and then suddenly run out of gas & sleep for couple more.

I apologize for my silence (again) – and this will likely not be the last time. Lately, my life has shrunk down to a daily effort to stay awake and find ways to cope with symptoms. It takes an hour to face the task of moving from a sitting to standing position, without toppling over and there may be one of two amusing slapstick stores but  I find they are wearing thin. I asked The Dave where I might find help and he made some inquiries.

Yesterday, I was assessed by at Rehab. I attempted to stand on one foot. I attempted to stand with my eyes closed. I was waiting for them to ask me fly. Why not? Just about as feasible an idea at this point. I was astonished that I could do some of the tests and bombed completely on others.

They got me a cane to try. Oh great, one more wobbly limb to think of. I hated it. I do not have the élan of Dr. Gregory House. I thudded up and down, protesting, doing it wrong (apparently). Next came the four wheel walker – a device I regarded earlier with complete horror. I whipped along, did fancy turns, went faster than I’ve walked in a year, until Gail, the head physio lady, ordered me to stop turning pirouettes. I want one. I have a medial requisition to have a loaner from the Red Cross. I don’t care how it looks. Too late for that vanity.

It’s now at the point, where Heather has stepped in and is doing almost everything in the house. I’ve reached the point where I’ve stopped thinking this is optional. I start to cook, walk away and forget (momentarily, so far) that the stove is on. I get out of the car and leave the door hanging open. My short term memory retains a full two seconds of anything.

I have no idea whether the brain edema (swelling) is coming from radiation or whether I’ve sprung a few new aliens – in either case, the only help for it is steroids. I weaned off them after radiation and had a couple good weeks. But edema kicked in with a spectacular field goal and soon I was seeing triple, falling down, had zero appetite, headaches and just for something different, started throwing up. Back to the Decadron.

Two days ago, I started recording my meds because it is standard now for me to forget what I did 3 seconds ago. Did I take the Decadron? Or did I think I took the Decadron? You see the problem. So. I wrote down my a.m. dose – 2.5 mg. I wrote down my afternoon dose – 1.5 milligrams. No. Actually, I wrote – 3:45. Looking right at my notebook, I wrote the time of day, starting straight at my book, absolutely convinced I written the dosage.

I sleep 12 or more hours a day. My favorite pastime is sitting on the balcony with out potted plants, cheering buds to open. I identify with the plants – content to be out in the sun and fresh air doing little else than enjoying the weather. I’m also watching a lot of stand up comedy. Occupations that take zero energy and are good for the soul.

I’ve been noticing that my green crochet sweater has been hanging on the back of my computer chair for a week. One day, when my energy is at a high of maybe…oh…50%, I’ll cross the room and hang it up. Meanwhile, you’ll find me sleeping.

MEDICAL GENIUS

It’s 6:00 a.m. The steroid alarm  goes off in under five hours, so I’m forced up, sitting on the balcony, listening to bird song. Bird song to me. More likely musical warnings from the birds to stay the hell away from their tree. It’s cool and misty. The spring leaves are glorious in soprano green.

And I’m cranky.

Lately, the meds and the lack of any kind of upward curve in symptoms disappearing is getting me down. One hopes, almost expects, that it would be steady road towards improvement, but the side-effects of eight months of medical genius are not quite that cooperative. Makes sense, really. Like trying to recover from the effects of lying in the trenches of WW1 under gas attack and then following with a visit to Chernobyl.

Oh yes. I am grateful to be above ground. Seeing I have no experience with the other.

At first, I was so grateful for that, it pushed all the other little stuff out of the way. Now, nearly nine months later, I find this limbo state difficult. I never know, day to day, what to expect. Monday, I’ll get up and barely be able to wobble to my feet. My vision goes out. The world looks like a triple-exposed photograph and my feet can’t feel the floor. Never mind the way-past-mature-memory lapses and cognition impairment. Tuesday, I slide to sitting position when I awake and, strangely, all that is nearly gone. I’ve learned not to count of Wednesday, though.

I try not to whine. To you or myself. But. It is frustrating beyond belief not to be able to plan a day ahead. If I make a date for company at home, will I be reeling to answer the door, bumping into furniture? If I’m brave and make a date for outside of home, can I walk 50 feet without staggering?

Small chores, absolutely including mental ones, are often totally exhausting. I can do them but I’m apt to sleep off the fatigue for hours afterwards. Focusing my mind, through the radiation burn and meds, is like running the Olympics some days.

Yesterday, I finally gathered enough will to start applying papier mache over my plastic radiation mask. Not having the energy for creativity turns out to take energy. The mask is huge and I plan to cover it in all kinds of whimsical and meaningful images, and with beads, naturally. I’ve had a good time thinking about all the good skills and memories that are tucked up there in my beleaguered brain. I figured I’d start gathering some of them in visual form before I forget them.

I apologize for the long silence. I know some of you drop in to the blog to check on me and find it disconcerting when there’s a long gap. For my friends – Wendy has a list, should anything dire occur. You’ll be notified. For now, I’m still above ground and not at least having new side effects. But I may go quiet for spells, depending on whether it’s a Monday or a Tuesday.

Love to all.

SIX DEGREES

I am posting this with great trepidation. My friend Peter is a proud, independent Brit and would never ask for anything. I was trying to do a private email campaign but there is no time. So, I’m blundering in here – hoping that my intentions are understood.

Beadsmith, Peter Sewell, my lovely friend, is dying of cancer. A very short time ago, he was diagnosed and given roughly six months to live, but the cancer has proved to be much more aggressive and Peter is now in hospital and time is drastically short.

His family and beloved partner are suddenly facing not only this terrible loss, but an unexpected mountain of expenses, including planning a funeral.

When I was diagnosed with cancer, I couldn’t work and lost the part of my income that paid for frivolous stuff like food. Many many good people quietly donated to a bank account for me – and it was, to me, a miracle. So needed. So surprising. So gratefully received. There is nothing cold about cash when times are desperate and no wealthy relative is due in town.

Now I know how the people who cared about me felt. How much you want to do something in the face of such sorrow & distress. How much you need to find some way to reach out and  help when all your words sound trite and useless and you live an ocean away. I’m crossing my fingers for 6 degrees of separation, folks.

This is Peter’s paypal address. Many of you know him from Facebook and if you feel you’d like to help and can, you can send a person gift through Paypal to: pandsewell@googlemail.com You will receive NO tax receipt, NO goods and services. All you get is to help a little.

Don’t think a small gift wouldn’t help. If you are cash poor, loving thoughts and prayers are also good.

I will trust in your better angels.

LINDA'S BLOG

WITHOUT CHECKING TO SEE WHAT THIS BLOG IS ABOUT - AND WITHOUT WARNING, FACEBOOK HAS REMOVED ALL LINKS TO THIS URL. IF YOU WISH TO CONTINUE FOLLOWING ENTRIES, KINDLY BOOKMARK OR TYPE IN http://howpublic.blogspot.ca  THANK YOU.

I CAN (NOT) DO IT MYSELF.

The above picture is as close as I can come to showing what I mean when I say my vision is blurred. Usually it happens with no warning and lasts anywhere from 30 seconds to a couple minutes. Unfortunately, I can’t do a picture of the staggering that occurs when I’m dizzy but imagine the walk of someone who hid in a bar after closing time and kept themselves well lubricated into the next day. Possibly someone with wooden feet.

So, reluctantly, I had to resume the steroids. Lesser of two evils, I figured.

When I’d first started back on them and was feeling somewhat less precarious, Heather and I drove out to Herring cove to a spot with a fabulous view of the coast and ocean. She and Wendy wanted me to view an area that required walking a very short path through woods. Last time I was there, I didn’t dare to, but armed with hubris and denial, and the barest minimum of steroids in my system,  I tottered after Heather.

Wrong.

The path was a foot and a half wide, sunk down, not level with the surrounding ground – and it was mined with tree roots and stones. Heather saw how unsteady I was and turned to hold her hand out. I didn’t, of course, take her hand. That’s where hubris and denial come in. The end result, near the end of the path, was me sitting down hard and unexpectedly and sort of sideways in the brush. No harm done. No injuries, unless you consider the last shredded remnants of my pride.

I keep an eye on “side-effects” because I have to report them and because I discover useful information. Like the fact that I have begin to, quite unconsciously substitute one word for another. Malapropism is the name of the disorder. Sometimes it’s funny.

The other day, I couldn’t remember the word for sushi and substituted “tsunami”…

(Which, in fact, was strangely appropriate as it came back later that night as a sort of wave) More often, though, it’s repetitive and annoying. I can edit something four times, send it or publish it, and still find more errors. I change tenses without noticing and leave words out – and if there’s a name or a word I haven’t been able to temporarily forget, I’d like to know what it is. Not that I’ll likely remember.

But overall, I’m a bit improved.

People often think they wouldn’t be as “brave” were they in my position. I think they might surprise themselves. And besides, I’m more stoic than brave. I do grieve. I have my teary times. But the thing that happens, if I don’t keep that in check, I end up wallowing in self-pity. Which is not anything like simply acknowledging your feelings or letting them out. It’s a wretched, miserable state. Far worse and less useful than simple grief -and it’s a shitty state to be in around your friends, too.

It’s a fact that we die. Now, later, sometime. I think I’ve pretty much accepted that.

It would have happened sooner or later – it’s just not avoidable. I’m fortunate to have the enormous support that’s come my way.

I do, however, need to reign in the I-can-do-it-myself denial factor. I am SUCH a pain in the ass to my friends.

PFFT! GONE. SUPER POWERS & CHILD REARING ADVICE

 

Consider this to be intermission. While I am experiencing a virtual cornucopia of weird side-effects, I thought I’d present you with the best laugh I’ve had in weeks. (By permission) a letter from a dear friend.
________________________________________________________________________________

I've always thought that an amazing super power would be to have the ability to "lift" energy of any sort and put it somewhere else. Like for example, take your headache "energy" and shove it into the skull of say, an unapologetic racist. But then, that would be a power that would require extreme responsibility and would be sought by all. So I had to scrap it.

Then for a while I was settled on the ability to make anyone shit their pants at my will. Great for political rallies and such, but not actually useful. Worse, it's only good for evil, unless I were to aspire to be the Mother Theresa of the constipated. No, no too much visiting hospitals there...

Ultimately, I've come to desire as my super power the following: The ability to spontaneously sublimate yourself and one or two people with you into an invisible, odorless vapor, and reconstitute elsewhere. Think of this! It's brilliant, if I do say so myself.

-stuck in the elevator? Pfffft. Gone.
-chased by a murderous mob? Pfffft. Gone.
-unbearable social situation? Pffft. Gone.
-couldn't be arsed to walk home? Pfffft. Gone.
-plane just burst into flames and flipped onto it's back? Pffft. Gone.

It's the ultimate "man-power" in my opinion, as mostly we men types are nervously eyeballing the fire exits and/or making excuses to get out of something.

No friend-healing applications however, so we're shit outta luck there. I suppose I could wish to go back in time and "try" in high-school. Maybe I could have been a doctor. I suppose I would also have to have not sniffed so much ether as well. Probably would have to avoid a few major knocks on the head as well.

You know what, fuck it. I could never have been a doctor. Even if I were twice as smart as I am, I still would not have had the discipline. Or the empathy really. I'm okay with this, but I had to get there on my own. See when I was little, my very-well-meaning mother made the massive blunder of telling me that I was very special, and that I could do whatever I wanted to do in the whole world when I grew up. What a terrible thing to say to a child!

The result of all this hooey is that you wind up feeling, whatever it is you're doing with yourself, that you must've at some point blown it. You spend a fair bit of time trying to figure out the exact moment it all went pear-shaped and wrong. It takes years to get to "Waitaminnit, I could NEVER have flown the space shuttle! Everyone in my family wears glasses and always has!" It's very upsetting.

Now if on the other hand, you tell your kids: "You are a lovely little boy/girl, but you have mine and your father's genes, so there's going to be some limits you'll have to work within. For starters, no one in your family tree has ever been much of a looker, so you'll have to be extra smart and charming. This you'll have to work hard at, as there's also a 75% chance you're somewhere in the more gaily--coloured part of the high-functioning autistic spectrum. You have six uncles with Aspergers.

Also, your entire fathers side are horribly bandy-legged, so forget sports unless you count race car driving. Having said that, there's more than a few lawyers in the family, and no (insert last name here) has ever been convicted of bestiality, you can look that up when you're older.

You're not of a particularly socially disadvantageous race or creed, and we might be able to scratch together a college fund for you so long as your fathers vasectomy is successful. I'd say you have a perfectly good chance of working for a municipality or even an ethical small company. Avoid the entrepreneurial stream, you're descended from peasants all the way around. Shoot for 'left-hand man' if you can."

Now armed with this, whatever you do (within reason) could very well seem alright. "Well, I'm a bus driver. Not too bad for the spawn of a latchkey kid and a wristwatch repairman."

What the fuck was I talking about?

Oh right, I'm sorry that I can't give someone else your cancer.

QUOTH THE RAVEN, "NEVERMORE"

August 2010 - another lifetime

On Monday, I surrender my title as Cheeriest Cancer Patient Ever. It is the third day out of five of waking up with a pounding headache and only the barest grip on where my body is located in space. The thought of food is nauseating. I take to my bed, where I alternate reading for an hour and sleeping for two or three. Monday night, I sleep a full eight hours.

Tuesday, it's an encore – with a worse headache. Getting up to walk two or three feet is downright perilous.  Going from sitting to standing, I pitch forward or stumble sideways. Once again, I am clinging to walls and furniture to get around. And worst of all, the Raven begins his gloomy croaking. I think about putting a wig on and burst into tears.  I will never brush my hair again, never get up to go for a long walk, never wake up with a sense of purpose, with things to do. Goddess only knows if I’ll ever see the real shape of my face again.

I am afraid the headaches and loss of balance mean the tumors are back. Already. I recite to myself the predictable side-effects of radiation and quitting steroids – exhaustion, headaches, upset stomach and so on. I refrain from calling The Dave. Waiting it out. Hoping it diminishes.

Lately, I’ve been reminded of my lack of longevity. A dear friend has cancer – a shocking recurrence and unexpected – at least by me. After I hear the news, I can’t stop thinking about it – how vicious, how tenacious a disease it is. I’m devastated for my friend. And I’m reminded of my own prognosis.

During my last consultation with The Dave, I ask if there will be follow-up tests. He is quiet for a moment and then says it is up to me whether I wanted tests scheduled now – or whether I want to wait until I have a symptom and just go about living my life in the meantime. It is the pause before he answers that conveys the message. Dave is kind and empathetic, but he’s never dishonest, never creates false expectations. If it crops up again, there’s not likely to be treatment. When. When it crops up again.

Somehow, I changed lanes during the radiation sessions. Like most cancer patients, I expected that the side-effects wouldn’t be that bad. I expected, truth be told, to feel a lot better. I wasn’t going to be one of those people who spend the days sleeping and lethargic. It’s a hard landing when you fall off those kind of high expectations. When you realize that you may, in fact, be plagued by any number of disabilities until you die. That remission may be short – and not at all what you imagined.

So, I’ve been silent for a while, not wanting to spread the pity-party around.

Today, I’m happy to report, I’m up and dressed. No headache. Less disorientation.

One day at a time.

RIP VAN WHINY

I wish I had something profound or exciting to tell you. However, unless the idea of someone becoming Rip Van Winkle is your idea of entertainment, you may as well stop reading now.

And by the way, next time I read the advice in The Big Book of Cancer Leaflets, I’ll try to remember that the predictions about side-effects are serious – but as to the adivice on managing them? The kindest thing I can say is that someone meant well.

For example: Thursday, the second day after I stop the steroids, I wake up with aching joints and a headache drilling its way behind my eyes. I open my eyes to a narrow squint, heave myself upright and swing my legs over the side of the bed. I plant my feet and wait until I can (more or less), feel the carpet, otherwise standing will cause me to lurch sideways. This particular morning, when I make the transition from sitting to standing, my body feels like it’s filled with wet sand. Jupiter gravity.

Coffee, I believe, cures everything, so I trudge to the kitchen, boil the kettle and brew a cup. Half-way through drinking it, my eyes are still in a headache squint, my joints still ache and I’m still Jupiter-weight. I make an executive decision: The fatigue wins. I will go back to bed and stay there. I will not get out of my pyjamas. I swallow two ibuprofen extra strength, and crawl back under the covers, intending to read. The print refuses to come into focus, even with my reading glasses on. I cover my left eye and the print clears. I cover my right eye – and sure enough, the letters blur. This has happened before on “bad” days, so I do the sensible thing – I fall asleep. And I sleep, off and on, for the next ten hours. 

Friday, the headache and joint pain are gone. I am not subject to Jupiter’s gravity. I shower and dress and Heather and I head for downtown. After errands, we drive out to a spot in Herring Cove with a spectacular view of the ocean. When we get home, I sleep. Again. 

And so it goes. Perhaps a little less sleeping as the days go on – but I’m still averaging a good fifteen or sixteen hours a day.

The advice on “handling” fatigue goes like this:

“ Try to sleep at least 8 hours each night. This may be more sleep than you needed before radiation therapy. One way to sleep better at night is to be active during the day. For example, you could go for walks, do yoga, or ride a bike.” 

Oh? And who do they know who sleeps over four hours a night while taking steroids? Going for walks? Love to – if only my feet would co-operate and stop seizing into cramps after 10 minutes. This is great advice for the one in a hundred who might have only one side-effect out of dozens.

“Plan time to rest. You may need to nap during the day. Many people say that it helps to rest for just 10 to 15 minutes. If you do nap, try to sleep for less than 1 hour at a time.”

Uh-huh. Just try to wake me up in 10 minutes. I've set my alarm (only a foot from my pillow) and failed to hear it.

And the really good news is:

“Fatigue can last from 6 weeks to 12 months after your last radiation therapy session. Some people may always feel fatigue and, even after radiation therapy is over, will not have as much energy as they did before.”

Oh, piss off! I don't have time for this. I'll allow a month. And then, whatever it takes, it's over.

"AFTER THE ECSTASY..."

I’ve always loved the Zen proverb, “After the ecstasy, the laundry.”

I have begun to think ahead. And even a limited amount of planning means that after months of floating blissfully in the “now,” I seem to be transitioning to the stage of “laundry” - metaphorically, you understand. My actual laundry basket is overflowing.

Point is, I think about the fact that I need to get off my butt and down to the laundry room. A few days ago, I felt compelled to spend hours finishing a massive beaded pendent. The techs in radiation gave me my mask as a souvenir  & I’m planning to make art with it. Looking forward to hot weather, I even bought summer clothes. For a long time, there was no impulse to work, to think as far ahead as July or August. To plan.

That sense of all being right with the world is still with me subliminally. But since treatment ended, I’m more engaged, pulled into the spin and flow of daily life. Other than coping with side-effects of treatment, I feel almost normal. I’m not being reminded of cancer by daily hospital trips. I am in the death zone but my mind has a hard time holding onto the idea. It’s a natural enough progression. Nothing stays the same.

Now it’s a matter of balancing between the need to be productive and holding awareness that trying to anticipate my longevity would be a crap shoot.  In September, post-surgery, when I first spoke with my surgeon, I asked point-blank for my prognosis. I swear he winced. “I’m sorry," he said, "I have to answer this directly because you asked me directly - about eight months.” I laughed. I had no intention of dying in eight months. But six months later, the tumors were back. Auntie C is a particularly vicious bitch, it turns out. Now, I’m coming up on eight months and I’m still here. I’m beginning to feel that remission could last awhile. “Could” being the operative word. I'm pretty sure I'll get to wear the summer clothes.

Once in a while, I wonder if the rumors of my immanent demise have been exaggerated and whether I should feel a little guilty for getting people all upset and then having the temerity to linger on. It’s darkly funny and the thought always cracks me up. I don’t know what’s next – or when. But it would be kind of cool to be the exception to the eight month rule. Long as I don’t completely forget that life is perfect just as it is and little stuff is little stuff. 

I know it’s been a while. 

You’ll excuse the brevity, I hope, but I need to get going.  I’m out of clean socks and underwear.

ONE LITTLE TWO LITTLE THREE LITTLE BRAIN CELLS

It’s  5:00 a.m. when I first wake up and stagger out to the kitchen on numb feet to take my supplements and choke down a glass of orange juice. The juice is mixed with Spirolina, stinks of swamp water and is a vile hue of forest green. I hold my breath and get it down.  Then I mess about on the computer, reading about supplements and finally go out to the balcony to watch the sun come up. At 7:00 my eyes are heavy again and I crawl back under the covers until 9:30. 

Some days, the energy doesn’t come.  Today is one of them. It’s as if I’m an hour glass – and the minute I’m upright is the minute the glass is turned - all the sand runs out immediately.  But I persevere – shower, get dressed, slap on a wig. I wait to feel peppy.  It doesn’t happen. Most of the day, I sit on the couch thinking about things I ought to do, could do, and staring vaguely into space. And then my eyes get heavy again. Wendy drops by to see Heather and me and my eyes begin to close, my head drops back and suddenly, although I’m still sitting upright, I’m asleep – right in the middle of a conversation.

By 5:30 in the afternoon, I’m finally awake. That is to say, a level or so farther from actual unconsciousness. When Heather goes out for the evening, I decide that I must rescue myself from this festival of lethargy.  I have been so cared for and assisted that it’s been months since I even grocery shopped by myself. Months since I carried anything up and down the stairs. Wendy and Heather have a way of quietly & unobtrusively pre-empting my efforts to carry on as if nothing has changed. I love them for it but I hate to feel like a burden and I figure it’s high time I proved to myself that I am perfectly capable. 

Um. It may be Heather and Wendy have been more accurately observing me than I have, myself.

Because here comes Linda’s Big Launch into Self-Reliance:

I find an appropriate sweater, my keys, my purse and put my tiny shopping list in my purse. Call the taxi, and get down three flights of stairs without mishap. The driver is a local guy who has often driven me to treatment, so we have a pleasant chat on the way. Upon arrival, the fare is $5.40 and I want to give him a $2.00 tip. Usually, I would take the $10 in my wallet and find the small change and ask for $3.00 back. But do I do that? No. For some reason, I give him $12.75 and ask for $3.00 back. He’s a good guy, that driver…and we end up laughing, trying to figure out what the hell I’m trying to do. He straightens it out and hands me back the correct change. 

Onward through the “do not enter” doors, which have just opened automatically for someone else. Okay. Closer to the ATM anyway. I grab my cash and walk away leaving my shopping bag next to it. Back for the shopping bag. Next step: get a cart. I’m good. I’m good. Just little goofs. Finally, steadied by holding the cart handle, I pull out my list and survey the store. I feel ridiculously confident and happy to be doing a chore by myself. Look Ma! No hands!

Or no feet.  Mostly, I stick to the list. I push the cart slowly and only knock into three display stands and miscalculate one corner turn. Still good.  Nothing crashes to the ground. The last purchases are a bouquet of mixed cut flowers and a dozen pink roses. I do not embarrass myself in front of the nice young man at the cash. 

It’s a lovely cool night. Outside I find a seat on a stack of bags of gardening soil and wait for my taxi. I put the bag and flowers down and settle in watching the sky turn from glowing deep indigo to blue black. It’s half an hour, then 45 minutes, then an hour. Usually I’d call the cab company, but clearly, if they had an available cab, it would have come. Why piss of the dispatcher for nothing?  Besides, it’s fun to watch the people come and go. The air feels good. I’m actually awake and out in the world all on my own. 

The cab does finally arrive but as we pull up to my door and I reach for my bag, I realize I’ve left the flowers on the stack of potting soil bags. I’m damn well NOT giving up those roses. So we turn around, the cabbie betting that in Spryfield I’ll be damn lucky if they’re still there. I pretty much know they’ll be there. I have no idea why I know that, but I’m right. I grab the bouquets, jump back in – and when we arrive back, I do the same bizarre financial calculation I did with the first cab. And this driver, who doesn’t know me from Adam, ends up laughing like hell, explaining what I’ve done – corrects my mistake and hands me the right amount of change. I must have angels.

It’s almost over. I lug the stuff upstairs without tripping. The dying bouquet has to be prepared for the compost, and I carefully cut the ends of the new flowers. Meanwhile, I’m cleaning the vase by running very hot water into it. The glass is too hot to touch, so I switch to cold, somehow forgetting momentarily that glass subjected to extreme changes in temperature will break. The bottom of the vase pops out clean. 

Now, here I sit. The groceries are packed away. The roses and mixed flowers are in vases. All is well. So…what’s the score?

Two Oops!- Forgot- that’s. 

Three display near-misses. 

One bad corner turn.   

One broken vase.   

Extra cab fare. 

And the discovery that at the moment, a calculator is not optional.

But it’s 10:54 p.m. and I’m awake now! And mercy of mercies - the brain cells that are delighted & amused by the ridiculous are still alive and well.

INTENSE, MOVING AND GLORIOUS.

My friend sent this link this morning. And this short little film expresses so much so that I've struggled to express. Being happy, elated sometimes, joyful...in the face of cancer must seem like such a contradiction. And surely there  have been days when pain and sadness were in the lead. But so rarely now. I have today. Today is perfect. I'm so grateful and touched, Cate. Thank you for sending the link.

IN-BETWEEN THOUGHT AND ACTION, ACTION AND REACTION

“There will be fatigue – usually that’s what most people complain of most. You’ll lose your hair & your skin may become burnt and sensitive. There will be a slight loss of cognition – you’ll just think a little slower and usually the memory gets a little worse. You’ll notice, maybe close friends will – but it’s usually slight.”

It’s my first consultation with The Dave and he’s referring to whole brain radiation (WBR). I take this in without agreeing to it or refusing it. It’s not an immediate treatment. Going through chemo and chest radiation, I don’t feel the need to look forward to the next part of the horror show just yet, thank you.

But when the chemo ends, I start to research. There are horror stories of people who never get out of bed anymore. Blindness, deafness, brain bleeds. A medical article suggests that perhaps Alzheimer’s drugs could be used to correct the damages of WBR. I search on, looking in vain for one single more hopeful story. 

Nothing.  

I take stock: I’m terrified of dementia. I place a high value on intellect. My memory is already “mature,” meaning that I regularly forget dates, names, places and even words. I’m partial to seeing and hearing. Does WBR sound like something I want to risk? Hell, no. So next time, I inform the Dave that it isn’t happening. He doesn’t argue.

Fast forward two and a half months. The vertigo and headache that signals brain tumor are back and inoperable. The choice narrows: lose my mind, my ability to stand up or think straight or hold a spoon, or Goddess only knows what other faculties and then, as a grand finale – die, sooner than later.  Really, no choice at all, once I look at it that way.

 All I can do is give in and decide that I’ll do anything  possible not to become senile, self-pitying or flop like a great white whale in my bed. I set my will. I put my faith in The Dave because The Dave and my will are about my only weapons now.

During treatment, they assess me once a week. Down the checklist: headaches? Vertigo? Sleep patterns? Mood? Seizures?  Memory loss? Stomach problems? Personality change?   

I sleep in rounds: two hours, four hours, one hour, spread out through the day and night. The vertigo is getting milder and I don’t have headaches. Same crappity memory I always had. Personality change? I say “no,” but glance at Heather just in case she’s observed something different. She shakes her head, “no.”

But it’s not quite true. I see a difference.

In letters to friends, I’ve tried to describe the change. There is a nano-second in-between thought and reaction. Quick as a puff of air. And in that nano-second, anxiety slips away. My thought process can be very quick but I don’t feel compelled to act or judge immediately. A thought strolls in. It stays for a second. And then I act – calmly. 

This, from someone who has suffered from nervous, anxious, rapid thinking processes her whole life.  This from someone who has frequently wished she could shower the inside of her own overworked brain, just to make its endless yammering stop.

I still read at the same speed, my comprehension is the same. I still can do intricate work. I still love to research and haven't lost my curiousity or interests. My memory is rather unreliable – but hell, that’s no problem for a chronically organized list maker.  The monkey mind still has fun – but she’s stopped throwing bananas at the tourists and is sitting in a tree-top feeling pretty darn fine.

I thought it would be terrible but it’s like being dropped from the jaws of a tiger.

ONE PILL MAKES YOU LARGER

Lately, I have failed to live up to my sterling reputation as a confirmed curmudgeon. I’ve wondered, time to time if my unnaturally peppy state of mind might have been just a little annoying. Awright, awready with the peace and love to all mankind. You’re giving me a headache.

But I haven’t lied to you. I know. It’s a pretty strange reaction to cancer and cancer treatment, all things considered, but I’ve been lucky and I’m so grateful for it. 

However…

Just to be clear, treatment is not exactly the party I’ve made it out to be. Well, maybe a surprise party – with the surprises coming daily, sometimes hourly. I wake up wondering what mischief my body has in store for me each day. There’s always something.   

Thursday – I’m putting on makeup and suddenly notice peach fuzz growing down the side of my right jaw. Just my right jaw. Huh. That wasn’t there before. The regrowth of hair on my head is falling out at a very rapid pace; I shave my legs every 2 months & now (are you kidding me?) I’m growing a beard?! On my face…which looks distinctly like someone has pumped helium into it and plans to use it as balloon.  

Also, just for fun…my tongue looks like I glued cottage cheese to it and it burns like hell. My throat is sore. My taste buds are at about 30%. Is that jam or ketchup I just ate? 

Steroids, The Dave tells me. Oh those lovely steroids…the sleepless nights, the swelling, the weight gain, the 30 second psychotic breaks when I’m overtired.  He assures me that the hair growth will stop, my face will eventually show evidence of bone structure and he gives me a prescription to treat Thrush Mouth.  And I’m off…..

…To Friday, when I wake up with zero vertigo. Zero!! Of course, the nerve damage in my feet and ankles now makes it feel like I have jelly beans glued to the bottoms of my feet in random places – but the room is not doing its’ merry-go-round motion. I’ve woken in the night with sharp pain in my knees and down my shin bones & it lasts until morning. But hell, I’m not dizzy and I feel good. When Heather goes out, I do the dishes, sweep the floors, and clean the bathroom. Look at me go, I’m thinking – I could pass for normal! 

It’s a day of phone calls and a visit from a friend who comes bearing lovely yellow flowers and a huge box of European cookies.  A really enjoyable afternoon but 10 minutes after we say goodbye,I am barely able to keep my eyes open and I can feel ‘roid rage surfacing. Steroid rage is a very scary thing. It comes at you like a sucker punch. You push to keep going that one last minute, you put off resting for 30 seconds too long and you think you’re doing fine. And suddenly it’s as if any noise, any movement, the very room itself is closing in to attack. It doesn’t last but a minute, but it’s terrifying. That night, I sleep 7 hours for the first time in months.

And hello Saturday. Hello no vertigo again. I turn in a circle – a move that would have toppled me a few days ago. The room stays still. I get dressed and sit down to put my slippers on and observe that I am wearing someone else’s ankles. My ankles are bony and thin. The ones I have on today are puffy and fat and don’t like to bend. ‘Roids, ‘roids – do you ever stop giving? 

Since September, I’ve been scared to try beading. I have nerve damage in my fingertips. My hands sometimes shake slightly. And heaven knows, my eyesight seems to change hourly. But I steel myself. It’s a simple embroidery piece and I’m doing textured fill-in. Should be easy. I put on my new reading glasses and find myself moving the piece nearer and then farther away to focus. Finally, I cover my left lens and my vision sharpens. I cover the right lens and it blurs. My NEW prescription glasses, mind you. I stick it out, damn it, finally managing not to stab myself or punch the needle into the wrong spot, but it’s damned alarming to think I spend $900 on three new pair of glasses and my eyesight has changed already.  An hour later I try the same lens covering test on my distance glasses. Same result.

Insert small sigh here. 

That’s how it goes – really, it’s annoying. It’s inconvenient. Sometimes it’s plain infuriating. But somehow, it doesn’t resurrect my inner curmudgeon.  I’m still not unhappy. It’s the price of the treatment and it’s not like you don’t have to pay. Many others with cancer are in real agony and believe me, my side-effects are practically a bouquet of roses in comparison and I know that. 

And this evening? I can see perfectly through the left lens of all my glasses. Surprise!