Maybe Some Day I'll Learn to Dress Myself....and Talk



Despite yesterday's morose post, I want you to know that Curtis and I spend a great deal of time laughing and joking. We really crack ourselves up, and a lot of times it's because I get tired and do something clumsy or get my tangue tongled....

Many nights I wake up soaked from night sweats (another symptom of my illness), and I have to change my nightgown and mattress pads in the dark. The other night, I fell asleep watchin TV and, not wanting to turn on any lights and disturb Curtis' slumber, I changed into my nightclothes under pitch blackness. For the second time in less than a week, I awoke with my nightie on backwards.

We did laundry yesterday, and when Curtis brought up the basket of clean clothes for me to fold, my nightie lay on top with a big sign on the front of it that said, "FRONT."

Smarty-pants.

I don't think I've ever mentioned this, but I have a real aversion to anyone passing gas, especially when it assails my olfactory senses. (Well, to be honest, I don't know anyone who LIKES it, except maybe for the perpetrator, or guys when they get together to watch football and actually compliment each other's emissions.) Anyway, Curtis', erm, performance can be inspired by oxygen and water, but whatever he had ingested that day was practically makin my nose bleed. He kept proclaiming his innocence, yappin away about how HE couldn't smell anything. You really hadda be there, but I was so flustered I interrupted him, hissing, "STOPTALKINGANDBREEEEEEEEATHE!" in such a way that made Curtis burst into hysterics. He has mimicked me many times since, both of us endin up giggling like maniacs, including in church today just before service started.

After church we went to Walmart to pick up a few necessities. It was a madhouse, and I could feel fatigue takin me over.

Uh oh....

As we waited at the end of a long line at the checkout, I was about to say something about Cowboy Joe's blog, but it came out, "Cowboy Blow's jog" (my apologies, Joe). In the noisy store, the last word sounded like "job" to Curtis, and we were hopelessly crippled by a fit of hysterics again. The poor cashier didn't know what to make of our guffaws, tears streamin down our faces, and howls of laughter.

Hang around with us, and you're bound to end up shakin your head...

No Projectile Pea Soup, at Least



I do okay, most of the time, all things considering. But just in case I forget, just in case I start to feel a wee bit too normal, my alien body betrays me again. Reminds me, in its demonic Linda Blair-in-The-Exorcist growly voice: "Wait a sec there, little woman....Hold on, missy....You can play with talking strawberries all you want, engage in all sorts of silliness and laughter, but here's a strong jab of pain to remind you that I'm possessed with a nasty demon that isn't going to go away....hisssssssss mwahahahaha...."

And I'll get a searing phantom pain in my side, a bizarre swelling under my eye, a sharp pang in my abdomen, or a sudden bout of crippling fatigue. I'll feel full after two mouthfuls, nauseous after an enjoyable meal, apathetic in the middle of a favourite activity.

And then I think, oh yeah, that's right, I forgot: I'm terminally ill. Tough to wrap your head around that one, lemme tell ya; especially when you're busy trying to live life as you did before a nice man looked sadly into your eyes, sat with his knees against yours, clasped your hands in his, and told you you were done for.

I don't mean to be morbid, and the last thing I want is sympathy. I'm just trying to convey what an odd, surreal experience this is. And that I'm doin okay most of the time, something for which I am truly grateful.

And so, I roll merrily along: baking, cooking (just put a lovely stew into the crock pot, one of Curtis' favourites), laughin at my own goofy jokes, spoiling my pets, marvelling at nature's wonders, wiggling my ample butt in time to Latin music, remembering, loving my husband, breathing in and out.

And putting my random thoughts here, in cyberspace, for the bored, the interested, the hostile, the friendly, to see. I wonder how long they will survive me, floating out here like ghostly echoes...

The Drug Trial and a New-found Dutch Connection



I received a call yesterday from Pat, my drug trial nurse, with the latest word on my drug trial: The preparations are in their final stages, documents being sent back and forth between CancerCare Manitoba and Pfizer for signatures. The trial could open "any day now," with no one able to be more specific than that. I await news "patiently," teeth gnashed and foot tapping.

Through a comment made after yesterday's post, I learned of a bilingual message that had previously been left to my "100 things" page, which I almost never revisit. That comment was from a Dutch blogger named Herman, who came upon my blog via John's Online Journal. Given that I was born and raised in Canada, and never schooled in the reading or writing of Dutch, I was thrilled to be able to clearly understand everything that Herman wrote. I plan to visit his blog and brush up on my family's mother tongue, while delighting in his photos and narratives.

Keeping in touch with my Netherland roots has always been important to me. I grew up hearing conversational Dutch peppered with English, so my vocabulary is somewhat limited. My exposure to the written Dutch word was only through magazines that my Tante Tina used to send when I was little. Oh, and I can't forget the two precious children's books that she and Oom Ad gave me when I was four years old. I pored through them, and they still sit on my bookshelf: "Versjes die wij nooit vergeten" ("Little rhymes that we never forget": a collection of children's nursery rhymes), and "Okkies verassing" ("Okkie's surprise" - Okkie being the name of an elf). From about the age of six, once or twice a year I would painstakingly and diligently pen a letter to Tante Tina and Oom Ad, in Dutch. My mom would laugh at the errors until tears streamed down her face (she said I was writing "Afrikaans"), but my dad would patiently correct only as much as needed to be to ensure comprehension, and mail it, as it was, to my adoring aunt and uncle. They were a childless couple who doted on me as if I was their only grandchild. I met them only twice, once at the age of four, and then again ten years later, when my mom and I visited them in Rotterdam. The love between us was instantaneous and lifelong, and has endured until today, years after I mourned their passing. I still remember with great fondness the warmth and "gezeligheid" of their home, always embued with the rich smell of freshly ground coffee beans; the cuckoo clock on the hallway wall; the pull-chain toilet that sat like a king's throne in its own separate room; the chickens in the backyard that I got up early to feed with my uncle.

All of these wonderful memories wash over me and warm me like a blanket. Another gift that blogging has brought me. If you are reading this, hartelijk bedankt, Herman.

Thank you so much.

Having a Fit(ting)



I am feeling melancholy and frustrated about my drug trial being inexplicably stalled. Don't the people in charge of these things realize that weeks and months make a difference to those of us battling a deadly cancer?

In an effort to cheer myself up, I went through closets and drawers to try on clothes after my morning shower. My weight loss has been quite dramatic, and I'm able to fit into some really nice clothing that has hung idly for several years. After my nephrectomy in 2001, I bought a gorgeous 2-piece suit by Jones of New York. It was intended to be my wedding outfit. Originally priced at $400 including taxes, I got it for about $120 at a factory outlet that was having a huge sale. I gained weight, and it has been in plastic with the tags still on it, ever since. Not only does it fit now, but the skirt could stand to be taken in a bit. I need to be invited to a wedding or some other dressy function real soon.

I tried on other clothes, especially summer ones, that I will be able to wear with confidence when the seasons change. In fact, I will have to buy a lot of shorts, as most of mine fit me like oversized potato sacks (and that only makes the butt look bigger). I guess you could say I lost weight the hard way, but I do feel more comfortable being 55 pounds lighter.

Something else positive to report is that my eye is finally healing. Going to see my Clark Kent-handsome eye specialist turned out to be a treat for my eyes in more ways than one: He diagnosed me with corneal damage similar to what skiers and welders can experience (only worse), and gave me some thick eye drops and ointment that have proven to be very soothing. I can read the guide on the TV again. Next week I hope to begin work on a cross-stitch project, if it doesn't cause too much eyestrain.

I'm Gorgeous



The "Look Good, Feel Better" workshop was wonderful. I am deeply appreciative of the volunteers, CancerCare Manitoba, and all the cosmetic companies that so generously donated the box of beauty products I got to take home.

Having the appearance of a woman with two complete eyebrows again makes me feel like a whole new person.

Happy Valentine's Day

Free Stuff



Tomorrow I will be spending Valentine's afternoon at a workshop called "Look Good, Feel Better." It's designed to help female cancer patients reclaim their femininity from the ravages of their disease and treatments. Each of us gets a kit stuffed with goodies donated by major cosmetic companies to practise with and take home afterwards. Volunteers show us how to refresh and soothe our damaged skin, redraw missing eyebrows, and just feel pretty again.

I haven't had to wear my wig yet, as I'm still able to conceal my bald spot with my own hair. My hair loss continues but has slowed down. I hope the hair will eventually regrow (unlike chemo, it doesn't always, after radiation); right now my scalp around and above my left ear is as smooth as a baby's bum. I'm missing only one third (the end) of my left eyebrow. I'll have to skip makin up my left eye, as it is still irritated and can't tolerate schmutz of any kind.

I'm lookin forward to this; I do LOVES me some freebies.

Sweet Relief - An Update to My Previous Post



I learned this afternoon from my oncologist that the Sutent drug trials are continuing in Canada, as the drug has been approved in the U.S. but not up here yet. This is GREAT NEWS for a number of reasons: First of all, Sutent costs $3000 a month, and Pharmacare is resisting coverage of it because it is an oral drug; so once it is approved, the cost will be crippling. Secondly, once you are part of the drug trial, Pfizer pledges to provide you the drug, free of charge, for as long as you require it...providing it is working for you. Therefore, it is to my advantage that Canadian health authorities take their sweet time in authorizing Sutent for the market.

The cubicle monkeys who need to place the final rubber stamp on the Winnipeg trial are draggin their heels, so my trial is not ready to begin yet. Dr C hopes that in the next week or two, the final "t" will be crossed and the final "i" will be dotted, so that we can get this show on the road.

I'll be ready for that phone call.

Remnants



Fifty-eight years of marriage, halted by the death of my father. Seven years of Nazi occupation in Holland. Two miscarriages, the death of one small child. Emigration to a foreign land across the ocean. A new language. The raising of five children. The acquisition of a home, the jubilation of a mortgage finally paid. Countless joys and sorrows. Between the two of them, more than 180 years of life and memories on this planet.

My parents' lives, reduced now to a roomful of boxes and crates. Divided and scattered amongst various family members.

It's cruel.

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Update on My Mom: She is in isolation and will remain there for at least another two weeks. She has a streptococcus infection that invaded her body through wounds on her knees that were sustained when she fell and got deep rug burns from trying to navigate herself across the carpet. I am absolutely verboten to go anywhere near her for the duration. My brothers must wash their hands and dress in gown, hat, mask and gloves before entering her room. She is sundowning, which means that during the day she is relatively lucid, but come nightfall she is lost in an abyss of hallucination and paranoid delusions. She becomes distressed and believes that we have abandoned her, forgetting any recent visits and maintaining that we have launched an elaborate conspiracy against her.

We have absolutely no say as to where she will be placed when she is discharged from hospital; she might even end up in one of the residential nursing facilities just outside of the city.

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Update on Me: Yesterday, a press release was issued announcing that the FDA has approved Sutent, the drug that I was about to begin as a trial. The approval comes suddenly and with unprecedented speed, which is due to exciting and encouraging results in the drug trials, which will now be immediately terminated. What the implications will be for me is uncertain; I have an appointment at CancerCare this afternoon, at which I was to have signed consent forms and scheduled tests to begin the trial. The agenda of the consultation will now switch to investigating whether or not Sutent will be available to Canadian patients of renal cell carcinoma. If it is, the next determination is whether or not it will be covered by private and/or government drug plans, because the cost of Sutent will likely be astronomical. If the drug is not approved and available in Canada, then my last hope for management of my cancer has evaporated.

Life's a Trip...



...and I keep stubbin my toe.

Now I'm dealing with an eye infection. The radiation affected the entire left side of my face, as well as the inside of my mouth, including my taste buds. For weeks, my left eye has been stinging and blurring up on me, and it felt like a sunflower seed shell was trapped under my upper lid; Sunday a stye erupted on it. I hope this heralds the "exit" of the radiation from my orb, in the same way fever blisters on my lower lip seemed to be the swan song of the canker sores I'd had in my mouth. I am treating my eye with warm compresses and the application of an antibiotic ointment, and it seems to be slowly healing.

I learned last night that my mom has been put into isolation. There's some sort of bug in the hospital that is dangerous to those with suppressed immune systems, which of course means that I can't go anywhere near there. Apparently, her bloodwork showed some presence of the bug, so she has been put in an environment to protect both her and other patients on the ward. I wish she didn't have more to deal with, but at least she gets a private room this way, which has to be more restful than sharing a room with others who constantly babble and moan.

Our dishwasher has been limpin along for some time now, threatening to expire, and as Curtis posted in his blog, we thought it had finally gone boobs up....On a whim, I decided to try to put a load through last night, and it worked just fine. Of course. I seesawed back and forth with myself (Curtis left the decision up to me) as to whether or not to cancel the installation of a new appliance, and decided we'll never get a better price than the one we got, so we might as well go ahead as planned. Who knows whether we would get another load, or hundreds, out of the old machine? It may be an unnecessary expense, but I've decided not to press our luck.

Tomorrow evening my family and I meet at Mom's apartment to begin the painful process of boxing up her possessions. If you have an extra prayer in your pocket, I'd appreciate it if you could earmark it for us, because it isn't gonna be easy.

High School Reunion



This past summer, my high school had its 50th anniversary. I never got any invitations or anything; I'm guessing that the name changes caused by two marriages and a divorce made the paper trail go cold on me. My brother, who still bears our distinctively Dutch surname, did.

Not that I would have gone, anyway. For one thing, I was too sick from my interferon injections; for another, I don't do reunions. I know that there are lots of pretty people there – the same ones who were pretty back in high school – who go to scoff at how so-and-so got fat, old, and/or bald. I know this for certain because my brother is one of them.

He has aged very well. He is fit and slim and has a great wardrobe. He was Mr. Everything back in the day: athletic, academically gifted, and popular. He still is, and he is a successful businessman whom everyone can see really fulfilled the promise he showed as a teenager. He is precisely the kind of person who, if he weren't my beloved brother, would intimidate the daylights out of me and fill me with seething envy. I hate those middle-aged women who boast about still bein able to fit into their cheerleader uniforms – makes me wanna take out their kneecaps with a Louisville Slugger.

My brother, Mr. E, did report that people asked after his kid sister. Maybe they wanted to come up behind me and kick the back of my knees or knock my drink out of my hand, just for old time's sake. I was NOT one of the "popular" girls. I was a goody-goody, a choir member, a lousy athlete, and one who wore her hypersensitivity on her exterior like a giant kick-me sign. I still cry easily, becoming a blubbering mess watchin one of those sentimental long distance commercials. People find that endearing when you're 51, but in high school it invites victimization. Maybe that's what inspired me to become a high school teacher myself: I guess I wanted to go back into the environment with some control over the situation, some authority, and get it right this time. It worked: I was for twenty-five years "one of the popular teachers," and a champion of the underdog.

I often entertained my students with stories about my haplessness and awkwardness as a young girl; in fact, most of the stories in my earliest archives were first told and retold to them over the years. ("Mrs. C, tell the one about…") It's funny now; it wasn't then. I wasn't a glamour girl – I was cute and wholesome, but not desired. I wasn't good at any of the sports that garnered admiration; I was a pretty good five-pin bowler, but puhleeeeeeeze – those shoes, those shirts! Why didn't they just paint targets on our backs?

Clearly, the organizers did a great job of my high school reunion. They put together some wonderful souvenir booklets filled with anecdotes written by former staff and alumni. They had some super entertainment and lots of fun activities. My brother had a wonderful time. I enjoyed hearing about it in much the same way I experienced high school life: from the fringes.

A Change of Seasons



The Riddle of the Sphinx asks, "What goes on four legs in the morning, on two legs at noon, and on three legs in the evening?" The answer, as many know, is, "A man, who crawls on all fours as a baby, walks on two legs as an adult, and walks with a cane in old age." Those of us with elderly parents are painfully aware of how things tend to go full circle, and how, with advanced age, there comes a kind of role reversal in which the offspring become responsible for the care of their helpless and dependent elder. Now it is the parent who cannot walk, feed herself or control her bodily functions; and the adult children who must make decisions that will best serve her needs.

This is a brutal and sad time for my family. Yesterday we had to tell our mother that, whenever she is discharged from the hospital, she will not be returning to her apartment; not ever again. It is incumbent upon us to dispose of her personal belongings: to sell them, give them away, store them, or split them according to the wishes expressed in her will. Her apartment must be empty by the end of this month. I hate pawing through her worldly possessions and boxing them up - it seems so cold and barbaric; and yet it must be done. My brothers and I will, of course, try to preserve the mementos of her 90 years on this earth with as much compassion and sensitivity as we can.

It's all so painful, and the worst part of it is that she will not be placed in one of the more desirable nursing homes for many months, if she perseveres that long. We are deeply concerned about what damage a less comfortable facility will have on her physical and mental well-being.

Right now, I don't like being the grownup.

More Showin Off



This is Ashley. I always favoured the longer haired dolls with the flannellette rompers; they seemed especially cuddly.



Pictured above is Hyacinth. I always named my muslin bunnies after prairie plantlife. Among her companions were Buttercup, Heather, Bluebell, Tulip, Rose, Sunflower, Flax, Holly (a bunny dressed in Christmas fabric, of course), as well as two boys: Clover and Thistle. That's Clover pictured below.



As Leslie suggested, I had a lot of fun making my dolls and bunnies, except for one thing: Each doll was unique because of her face and hair, but all the bunny bodies were identical, except for some variations to ear linings. I loved to make the outfits - each one an original - but I soon got bored constructing the muslin rabbits. An idea occurred to me: Why not create an assembly line of bunny parts: crank out enough arms, legs, ears, heads and bodies for, say, ten bunnies at a time? Then, having constructed the bodies, I could really enjoy the clothing design part of the project.

Bad idea.

It was so BORING to produce twenty ears, then twenty arms, twenty legs, ten heads, and ten torsos. I had piles of pallid body parts; it was grotesque. Dismembered bunnies stacked all over my sewing table. I felt like Jeffrey Dahmer. Assembling the little Frankenbunnies was a ghastly task. Only when I stitched on their little facial features and began to plan their wardrobes, did I feel their little individual "personalities" emerge. I never again made more than two bunny bodies at a time.



This is my sewing machine cover, believe it or not. I had fun making this one, especially accessorizing her with sewing notions.



I've done hundreds of cross-stitches, most of them depicting forest creatures. This large picture of a deer gazing shyly from among the snowy birches, is a favourite.



More evidence of my love of nature: Framed by delicate flowers and a chubby squirrel and rabbit is this poem:

In the woods...
Among rustling leaves
and graceful tender boughs
the cool air is filled with nature's harmony.

Come...
Ramble among the humming insects
and soft animal music.
Let the sparkling ripples
of the brook
reflect the sun to you.

Come...
to the stillness and solitude
of the forest.
Find an encouraging
yet invisible companion
and walk with him.

Looking back and thinking about these things that I have made, brings me peace. Many were sold, most were given away as gifts, a few of the most precious remain in our home, where my gaze falls upon them and makes me feel good. Much to my frustration, I never could paint or draw, so I became a crafter. There's something deeply satisfying about using your hands to produce something that gives joy and delight, or something that feeds the eye with beauty.