"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!

SHE PONDERS & GETS VERY WORDY

I’ve always been skeptical about the so-called “Law of Attraction,”

I don’t dismiss it, but I see it in my own way.

One side of it:

It seems to me that it comes out of poverty mentality: If I just acquired this, then I’d be happy. The Big Empty Hole Starting Place. There are various methods for “attracting”….paste-up story boards with pictures of desired things, mantras, visualizations etc. 

In my opinion, all of these are futile if what underlies them is a gaping sense of emptiness. The conscious mind may decide on “wants” the subconscious is in direct opposition to…or doesn’t feel are deserved. The result of effort extended under those conditions is a bit like trying to light a fire while pouring water on it. Wishing just doesn't make it so.

But I've had experiences, pre-cancer, with “The Law.” One of them was this:

Back during my working life, I launched Wild Wicked Beads. The plan was a part-time business designed to grow in my retirement. Financially, I didn’t need the business then. I didn’t need the recognition for ego, although it’s satisfying when people like my work. I just wanted to do work I really love & bring in extra cash when the day-job ceased to gobble the better part of each week’s energy.

The goal was full-time craft and the plan was simple. I determined I'd make designs that I liked – my best work, not geared to competing with current trends. I studied business practices and learned about marketing. Along the way, I planned to begin teaching, show in a gallery and publish designs – this, simply for my labor-intensive work to be credible in a high-end market. I set my will, I did the work and I let go of the end result, staying with whatever task was at hand. No mantras, no storyboards, no “wish I was there by now” – just seeing what happened if I kept my head down and stuck to the plan.

My teaching opportunity came through an excellent craft gallery and they invited me to take part in a wearable art exhibition. I designed and wrote a pattern that was purchased by Bead & Button and ended up in their Best-Of annual book. I set up an online shop and began to sell through local galleries. I networked with dozens of talented bead artists who constantly inspired me.

I worked hard, and opportunities seemed to stream steadily towards me. I had the feeling that conscious, subconscious and the mysterious universe were on the same page.

The other side of it - the one that makes me question...

Does a soldier attract his death? Does a child attract the loss of parents? Do thousands of refugees attract poverty and homelessness? Did the Japanese attract a tsunami or the Russians, Chernobyl? Is it just self-centered and sad to work on “attracting” a new car, when thousands don’t even eat? Is it right to think these unfortunate souls just didn’t have themselves aligned with universe and attracted tragedies to themselves? Do we attract cancer or other catastrophes? There’s a really wormy, sort of grasping element in the theory that bothers me.

In my case (and I stress that I can only speak for myself) – I suspect that on some deep level  of soul & spirit, I needed to become seriously ill. Hold on – I don’t mean as a punishment. I’m sorting this out and I’ll try to explain.

After the first holiday blush of retirement, like many people, I began to feel rudderless and alone. So much more of my sense of self was wrapped up with my job at the Art College than I would ever have believed – coworkers I loved, the students, the wonderful stimulating conversations and energy of the place.

I started to self-isolate and was often depressed, cynical and lonely. Was the best part of life over? I didn’t want to die – but if there’d been a pause button, I’d have pushing it pretty often. Just get me out of here for a while.

And then the fatigue set in for months. Two days of part-time work at Hilltribe would leave me utterly exhausted for the next three. Depression & exhaustion deepened as the tumor on my cerebellum started to slink towards my brain stem. Symptoms were vague enough that diagnosis seemed near-impossible, right up until I began to lose motor skills.

Finally, I am admitted to the hospital and a day later undergo eight hours of neurosurgery. I learn that I have terminal cancer of a particularly ambitious strain and my prognosis is, statistically, eight months. To review: I lose my beloved cat. I lose my job. I lose my hair, my future and 90% of the control over my life. I’m broke, sick and seriously under funded – and then there’s the rest to deal with: terror, fear, anger, loss, grief, seeing my friends’ hearts break. In the hospital, hours of sobbing at 4:00 a.m. Followed by chemo sickness ugly enough to want to switch the imagined “pause” button to an “off” button.

One day in January, the day after the chemo sickness is the worst, Wendy asks her question: “Say you only have three weeks? Do you want to spend it like this or enjoying doing things and being with your friends?”

Simple question – but it went down the well of my mind and hit water with a resounding splash.

I begin to think of the unimaginable kindness and care that’s come into my life in a steady stream. Lovingly cooked food, housework elves when I couldn’t lift a broom, groceries, hard cold cash raised by a friend – to pay for legal bills and the daily things my job on longer covered. Services – transportation, help with house repair, books, flowers, a kindle & computer notebook, company to the “big” appointments with doctors and to tests, daily calls to check on me, visits from people who live a thousand miles away, deeply sensitive and thoughtful conversations. The knowledge that I was not alone. I needed the help but it wasn’t at the forefront of my mind. Still, everything, anything seemed to show up at the door.

As I’ve told you, at one point, emotional baggage just broke loose and floated away. I have been happy and at peace for months now. I don’t want anything but what is right in front of me. A piece of Heather’s chocolate cake, any particular sky I’m looking at, letters from friends and strangers, writing. Whatever I’m doing now is enough.

The stream flows on. A new dish drainer and board arrive, a replacement toaster and clock for my shabby old ones, a pretty shower curtain and bath mat. Heather moves in – seamlessly – and it's like she's always been here.

Yesterday, come the tires for Heather’s car. “You don’t need to blog about this,” my friend says. Oh yeah. Won't mention your name but - Do So. I call to ask for tire or mechanic recommendations. Five hours later Dear Mr. Don’t-Blog-About-It visits, unannounced, like a fairy godfather, with four brand new tires in his trunk. It blows Heather & me right out of the water – not just the tires, but the generous spirit of friendship.

People, here’s where I crap out at polemic, if you aren’t asleep or cross-eyed by now.

I don’t quite know what to think of it all. I know that I do NOT think anyone is to blame for their illness. Please be very sure to take note of that. But maybe there are reasons for the tragedies in our lives - more all-encompassing than we imagine.

In my case – and not knowing my when my “best before” date comes – cancer paints a larger picture than physical illness. And it isn’t just about me. It’s a cat’s cradle and so many people have strings attached to their fingers. We are going through this process together. And I have never felt less alienated or disconnected in my life. For me, daily life shines so bright that I can barely detect the shadows now. I think of death, when it finally will come, as a natural conclusion. And now? My life is full of grace.

I don't use this word unless I fully mean it. To all of you who are part of that bright shining light, which is all of you.

Namaste

HER OCD WINS

Whole brain radiation is not entirely predictable - which why it was a last resort for me. Some people end up with severe deficits like near senility, deafness, blindness. Some people. The minority. But most of us, as I understand it, will have losses. Slower cognition, memory problems, fatigue.

I've told you how confident I am in The Dave and the nurses and technicians. And I'm pretty damned determined not to go down the fuzzy-brain trail any farther or faster than I have to. And I do believe that attitude counts for far more than we can imagine. I know that some symptoms will be tied to the period around treatment - and then get better. Some may come back as far away as a year from now. (Note how optimistically I say, "a year from now)

I've been checking out ways to help myself. There are good B1/B12/herb supplements (tested ones) to help with the neuropathy. A study of the results of giving Blue-green algae to the children of Chernobyl showed good improvement in radiation symptoms. Right now, I can't take anti-oxidants because they could interfere with treatment by beating the radiation to lock onto cancer cells, but afterwards, I'll start immediately.

Meantime, my OCD got the best of me today and I did the following self-check. A day in the life of a person having brain radiation. Yah know - a chart like this is my idea of fun. And besides...I figured out the left brain is still able to classify and organize. Gimme five Brothers and Sisters!

OBSERVATIONS: April 1 – AFTER 8 WHOLE BRAIN RADIATION TREATMENTS

MEDICATION	PHYSICAL	COGNITIVE	MOOD	PERSONALITY	ACTIVITY
STEROIDS
Upset stomach unless taken with food	Much less vertigo	Spells of normal speed thought processing when rested enough	Mostly cheerful…quite  calm unless the steroid dose is high	A lot less anxious, and glass half-empty than before cancer	Energetic mornings until about 2:00 or 3:00 p.m. when I suddenly collapse like a deflated balloon
Increased jitteriness	Rare or mild or no headaches now. Energy levels will drop very suddenly & I have to lay down	When tired, too much noise or stimulation feels like a hornet attack -Cross talk freaks me out.	Extreme agitation when over stimulated. Very unpleasant but only seconds long.	Not as compulsively busy. Don’t always have to be doing something but still remain active most days.	Reading -Writing the blog -Correspondence -Helping rearrange & decorate the house -Set up expense tracking sheet
Sleeplessness, restlessness.. Sleep in 2 -4 hour stretches.	Constant white noise in ears. Today, increased difficulty with hearing	Responses sometimes lag – a few seconds between thought & response	Positive & optimistic most of the time. Grateful & glad to be here.	Not sweating the small stuff, which is 99% of stuff.	-Housework -Cooking -Some shopping -Laundry & other -Routine tasks
Emotions at surface	Perpetual buzzing in head	Sometimes just dozy as hell – but I’m a whiz at Bejeweled	Dreams of illness and restriction…but not nightmares	Sense of humor still hanging in.	-visitors -Daily treatments -Sunday drive type things
Weight gain (Is that CAKE?)	Neuropathy – feet and ankles, fingertips – walking on bubble wrap	Tend to have to make myself focus on one thing at a time		Sense of wonder at things I would have overlooked before.	Still not doing any art but plan to start after treatment...sort of scared I'll be a bit clumsy & slow
Muscle loss	Have to pay close attention when walking or turning	Still can work with numbers, budgets, etc.
Extreme (loathed) puffiness	Double vision has stopped	Reading speed & cognition normal
Pain in knee joints	Lost sense of taste for one day – but temporary	Memory not much worse than my former crappy memory