Saturday, June 27, 2009

No Masto Here Day: Aging

What is it about us women folk that we fret over a perfectly natural process that is part of living...aging? Isn't it absurd that the women amoung our species make and doll themselves us as part of the mating game that we play with our men (and fret about showing signs of getting old or that we can't 'make ourselves up' as easily, or the same anymore) and in almost every other species it is the ...male that struts, cocks, preens and prunes his image so as to attract a mate...? (I have to stop wondering things like this, it only leads to wondering absurd things like 'I wonder what the world would look like if everyone had their own special coloured farts - you know, that would poof or dart, depending on whether you toot or let rip - be hard to blame the guy next to you in the elevator.)

My husband says I think too much...

Thursday, June 25, 2009

Michael Jackson & Me

It's been a few days since I blabbered on about this disease that my doctors think I have. There IS more to life than this disease; and I am more than the sum of allergic reactions, masto flareups and feeling like crap. I'm not usually one to jump on the celebrity bandwagon, however, the "King of Pop" has died and with him has died the icon of my youth. I know he got 'weird' over the final years of his life and had this intense pre-occupation with plastic surgery and (shiver) little people. I've had trouble getting my head around the whole child molester part of his life. I don't want to down play it however, this is not my personal experience of Michael Jackson.

We moved to Canada when I was 12. I went to high school in Canada, (Oakville, Ontario, Perdue High School (recently demolished) to be precise.) I was British with a very thick lower middle class pseudo-cockney accent and my new schoolmates had a hard time understanding anything that I said. It didn't help that I started High School when I was 12 (thank God they didn't put me in Grade 11, like they were going to...) so I spent the first two years feeling incredibly homesick and alone. I went home to Days Of Our Lives and, music. It was a scant year or two later that "Thriller" came out.

With it, not only had I discovered that I loved roller skating but I also found out that I loved dancing and emulating moon walks, pelvic thrusts, dynamic twirls and standing on my toes. I spent countless, endless hours practising in our living room. My dad had left us and my parents split. I was living with my Mum in the first of many rental homes with green carpet. We were broke. However, I had a record player AND the Thriller Album (that I bought with my own babysitting money.) I put Thriller on, and danced, and danced, and danced. I sweated. I got trimmer. I got sassier. And finally, discovered some self-confidence. I forgot the custody battle, the alimony battles and my Mum's struggles to feed, clothe and shelter me. When the needle hit my record, there was only me and Michael.

My Mum thought it was good for me. She bought me poster after poster of Michael Jackson (one of the few indulgences she could afford us) and I carefully plastered my bedroom walls with him. I never noticed, until he became white later, that he was darker skinned than me. I never noticed the nose he was born with that he would go on to alter and change time after time, seeking nasal perfection. I've always felt sad that he wasn't comfortable in his own skin. To me, he was the man in the white suit who sang like an angel and moved like a God.

During one of the many rental moves, my box of records accidentally had a solid oak table top dropped onto it. You couldn't convince me that it wasn't on purpose. My Mum's new boyfriend had dropped it and the ONLY record in the entire box broken, was my Thriller album. My Mum tried to find me another album, and believe it or not, it was impossible to find one. She got me the Greatest Hits of Michael Jackson; The Jackson 5 Hits; and various Michael Jackson compilations and singles...but couldn't get her hands on another Thriller album. I suspect, still, that her boyfriend (now her husband) wouldn't permit me to have another one. He hated "Wacky Jacky", as he always ludely referred to him. I took offense every single time he called Michael that. I thought it was a crude ploy to prevent me from dancing in the living room with the record player blasting. Those days were over. The boyfriend had moved in and the living room no longer belonged to me. There wasn't enough room to dance in my bedroom (they'd put a Queen sized waterbed in there.) So, I had to contend with posters of my pop icon staring blankly at me. I spent less and less time at home; and my record player was hardly ever turned on. But I moved on to nightclubs, surly moods, black clothing and The Smiths.

The music, style and dance of Michael Jackson saved me. It kept me from seeking pain relief (home sickness; divorce; inability to fit in; crushes on gay friends; crushes on boys that I thought never noticed me...) in the arms of drugs, boys or other vices. I danced through my pain. I danced through my insecurities. "Billy Jean" and "Beat It" filled me with passion, confidence and the drive to dance the best I could. Michael's music created a much needed bridge for me...the bridge between my fears and darkness, and the bright self-confident girl I became. Madonna and University did the rest...

So, Michael, even though I was SURE I was the girl for you (along with 10 million other girls) and went to bed many many nights dreaming of dancing with you, thank you. Thank you for the music, the moves and the motivation.

Wednesday, June 24, 2009

Truth Being Stranger Than Fiction

My grandfather survived WWII. Found dead in his London, England home. Alone, he'd been murdered. No-one was surprised because he was a bit of a bastard. He'd been dead for 12 weeks. No-one missed him. Except me. But then, to my mind, I'd never met him.

The post man found him. No longer able to stuff letters in through the letter box because the pile was too high, he remarked to a neighbour that there was an odd, disturbing smell coming from inside the house. The neighbour concurred...he'd not seen Peter or his Doberman dog in a while. The police were called. The dog had died of starvation but had eaten most of the house trying to live.

Grandad and I began our relationship when I was 10. That's my understanding. of this history. His history of us began just after I was born. We lived with him for a spell when I was a toddler in Richmond (England.) My mother, the only time that she speaks fondly of her fatherinlaw, says he called me his "Poppet" and was always trying to give me "sweeties", that he called "Minnies".

Our real relationship began with a letter. Grandad handed the letter to my parents at the funeral of my Uncle. My dad's brother had succumed to Cardio Myopathy at the tender age of 26. Estranged from the entire family, my grandfather showed up at the funeral with body guards, fearing for his life. Afraid that my father, or someone else in the family, would reap vengeance on him for his misdeeds and violent past, he came prepared.

It was the first letter anyone had ever written to me. Solely to me.

Whether I lived in the same country as him or not, he always wrote to me on airmail stationary, blue and wafer thin. Almost like onion skin. His name and address were embossed in the top left corner of the paper. As his paranoia worsened, our letters became invisible. I was 17 when he sent me the blue/black light and invisible ink pen. He told me in BOLD LETTERS that our continued correspondence must be written in this ink, so that no-one else could read it. He was teaching me the ways of F.R.I.

Over the years, beginning at about the age of 12 (just shortly after we moved to North America) he sent me books. Every single book was highlighted in two colours. Underlined in RED meant DO NOT HEED; IGNORANCE!; FOOLS!; UNTHINKING!!! sort of things; underlined in GREEN meant YES!!!; VERY IMPORTANT!!!!; HEED!!!; BRILLIANT!!! He sent me books on just about every religion, political thought, history and literature. Every single book was marked. Every single book marked with my name for my specific teaching. I began to understand how my Grandfather thought and saw the world by his markings in these books.

He was the first person to teach me that learning is a lifetime endeavour.

Now don't be getting all mushy over the brilliance or insanity of this man. There was a reason he was murdered. He wasn't very nice. At all.

(to be continued...)

Saturday, June 20, 2009


First, I would like to say a HUGE thank you to Carla of Masto Mama chronicles for designing, uploading and giving my blog page a facelift! I love the way her blog page looks, and asked her if she'd be willing to give me a hand or pointers for mine. I'm amazed that she had time for it because she is one busy Mama, but she threw herself into it with full spirit and friendship and...what can I say...I LOVE IT!!!!!!!!!!!!!! Thank you, thank you, thank you Carla.

Our dear dear friends Lesley and Buck arrived yesterday, just as the girls were getting off the school bus. They are Canadian military. Buck is being reassigned for a new tour in Comox, BC. So, on route to their new home at CFB Comox, they stopped in to visit with us. Lesley is going through Law School currently. She's an incredible woman. Hell of a first year that she had studying and being away from Buck. What matters is that they are together now, plan to be together as much as possible AND we wish them safe and happy travels from here to BC. They are driving across country. We are their last 'friend' stop. They are hoteling it hereon in. With their 14 years old cat, Lincoln (meow.) Our best and fondest wishes and prayers for a safe trip and new gig in BC. xooxoxoxox

It's Bronwyn's 8th birthday party today. Her actual birthday isn't until next weekend (when Auntie Tracy and Uncle Phil arrive from England...we are all jaunting out to Winnipeg for a family wedding the following week.) So it's a Princess or 'Bratz' themed party. In light of our dislike of Bratz slutty clothing, we are pushing for the princess thing. I'm up early to bake a cake but realize I have the wrong flours in the cupboard for making a cake. So, am thinking we might have to settle for an ice-cream cake from DQ or something? (I've decided not to sweat the small and big stuff...ohhhhhm, breeeeeeathe....) It's pissing rain right now, and is supposed to rain most of the day today. So, it'll become an indoor party if it continues. We were hoping for sun so that the kids could frolick in the back yard and back 100 acres (for the scavenger hunt!) I should've known the cake thing would go to hell in a handbasket because I already accidently touched the barbie that Bronwyn picked out for the centre of the cake, with a boiling hot oven pan and melted half her hair. Scary how it just dissolved before my very eyes...cinged. I will be making a pass-the-parcel game and maybe we have a big enough living room for Musical Chairs and Musical Statues. I'm tired already. ha ha.

Masto-wise...(touch wood) it's been a really good few weeks. This past week has been pretty good too. Is this what happens when you take your meds properly and do as the doctor tells you? I've had a few crap days but nothing emergency like. I follow the protocol for 'not feeling so hot' too...epi spray (one spray), 50-100 mgs benadryl every 3-4 hours, 50mg prednisone, double up on Reactine (so, 40mgs), Gastrocom/Cromylyn every 6 hours (like normal), puffer if needed and rest; don't go anywhere. I don't want to jinx myself but seriously it's been almost 8 weeks since I was last in hospital with this. THIS is the longest I've gone in a year and half. Can this continue? Oh PLEASE...let it continue. I want to be better.

I realized this week that I'm on tender hooks waiting for the proverbial 'axe to fall'; waiting for the next huge reaction (and trying to keep the drama to a minimum.) This must be causing me some stress somewhere underneath it all? When time becomes too goood to be true, and despite appreciating the good days, we're all waiting...when...when? Reactions usually hit me the hardest when I get my period, which I have right now. This is two periods, so far, without incident. This should be the norm in people's lives, NOT the exception. Not sure how to resolve this underlying fear that something awful is going to happen; that a massive reaction is around the corner. My approach is to take one day, each moment as it comes, but even my husband and kids are waiting for it...we all are. It'd be nice if this was it.

My husband, and my inlaws (better than having outlaws!) think the meds are finally working. Dr. Vadas did tell us they could take a few months for them to really work together AND I have to make sure I take them on time...which I am, diligently. It's weird not bending the rules; or forgetting to take them. The old me would've slacked off big time by now with all these bottles of pills and liquids, but we've learned that the cost is far too high. So, I've been trying it Dr. Vadas' way...and the sceptic in me has been put to rest: no massive reactions. Crap, maybe it's worth listening to your doctor sometimes.

Am still struggling with my weight issues. I know that I don't want to get myself bogged down by this weight gain, and part of me is happy that this has become a focus for me, rather than not breathing or falling down, but all the'd be nice if my body would co-operate with the exercise I do and the careful diet I'm on. It's either take up smoking or reduce input/increase output further. I'm not about to throw cancer sticks into my mouth, so obviously further refinement of what I've been doing is called for. Wish I could run, then this would fall off. Keep the new knees for 5-6 years or blow them out in a year of running? (My orthopedic surgeon warned me.) Hmmmm....So, forward ho...Maybe bellydancing for 4 hours a day would do it?

Well, best make my morning coffee and get ready for the 10 kids we'll have here all afternoon, and the few that are sleeping over. Hopefully we all still have our wits about us by morning...which, is Father's Day!!!!

Thank you to all you Fathers. I appreciate your role in raising our kids, supporting our families and being the backbone. xoxoxoxo Happy Father's Day.

Sunday, June 14, 2009

Blogging & Getting REAL...

Weird. People actually read my blog.

Maybe not millions of viewers or 'hits' but, tonight before dinner my fatherinlaw referred to Kevin's blog (link over there on the right, he has Masto.) and then later, after dinner my motherinlaw nicely mentioned that it had been "one pair of stirrup pants, not piles"...true enough. In my BLECH rant of a couple of days ago, I mentioned how impeccable her and my fatherinlaw's home is and mentioned briefly how she cleverly gets rid of stuff when stuff goes in and wondered why she feels the need to give us her piles of clothes, shirts, stirrup pants (ok, one pair)...and I know why. In my blechdom, I didn't say it, but I know. It's the same reason I take over bags of girly clothes when my two don't fit them anymore, to my girlfriend Tara or to Lori, or to Dominique or save stuff to take to Auntie Pam (who's a foster Mum), etc.; it's the same reason that other women in our community give bags of clothes to me, and me to them...and Grammie's (my motherinlaw) friends do the same for her and for us. There's this really cool 'recycling' thing we all do. It's sort of the right thing to do, actually. And for all of my blechdom the other day...I like it. I just need to get better at GETTING RID of things, or sharing further. I hope I didn't come across as being ungrateful in any way, because that is simply not true. AND, if I can be honestly inlaws have pretty stellar taste in shirts, plaid shirts and pants (ok, I'm not a big stirrup pant fan BUT she did say we could cut them off into capri's because they are perfectly good white pants.) I can't even begin to count the blessings that my family (which is my inlaws too) are to me. So I'm learning some pretty valuable lessons from all of this 'cleansing' of the house. I'm pretty shocked to find that they READ my blog though...AHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!! (Poppa, that's for you! lol.)

Oh, and I can now see the wood on my desk. Most of the clutter is GONE.

I realize two bags hardly makes us purged per se, but I got REAL with my clothes in my bedroom today. It was painful. I'm too fat for them. I was too fat when I got them; I'm too fat now. So WHY do I keep them? Well...because I dream of being thinner and TRY to be so, and not ridiculously so either. Just want to be back at a healthy weight. But let's be REAL, I'm obviously not doing something right. I posted this on FACEBOOK today too. Suportive and good friends remind me of what I've reminded them of in the same BLECH moments...there are some reasons for this weight gain, weigh holding and, blobdom. I don't drink pop (well, a small glass of something at Grammie & Poppa's on Sundays); I don't eat chips, chocolate or junk (can't even sneak them anymore...BLECH! where's the fun in that!!?!?? Not worth the ills they cause my body); I walk or bike most mornings; I clean the house fairly aggressively most days (and unbelievably, it looks EXACTLY the same crap way it did this morning by the time after dinner rolls around); I garden; I keep moving most of the day; the foods I can eat are so frakin' wholesome and good for you, it's unreal...I eat almost a macrobiotic diet and small portions; I make myself have a small nap in the afternoons now (this way, I make it through dinner and storytime); I don't eat most days past 7 pm. By all accounts, I should be one stunning Mama! But I ain't.

True, the Masto. meds I'm on aren't helping. I'm on 3 drugs that reduce my stomach acid (which must be close to nil or something ridiculous), and I've been on steroids pre, during and post bone marrow biopsy (and whenever I have a flareup, I have to take them) BUT...I need to be responsible for what I can be. And my ass is huge. This is NOT ok.

When I'm not well, I have almost constant diahrea and puke a lot. How come I don't look anorexic???? I know, I body goes into 'starvation mode'.'s pretty obvious, I ain't starving.

Can you believe I'm complaining about affluence? In the old days, a woman of my 'stature' would've been considered 'well fed' and 'well off'....I'm just fat here in Northern Ontario. On my 5'2" frame, 192 lbs (this week...ok, I'm pms'ing so I'm probably really 184 lbs, like I was last week for the bone marrow biopsy sedation) but that is TOO wide for someone as short as me.

Saturday, June 13, 2009

Saturday at Home

It's so nice to be at home on a Saturday. I can't begin to tell you HOW many Saturday's I've spent in hospital. It's nice to be here.

Feels much better to be mostly productive. I sorted my kitchen (I spend enough time in it!) and got rid of PILES of clutter from the drawers and cupboards. Feels good to get 2 full garbage bags of stuff OUT. Bedroom is next. You know all those clothes that I keep intending to get into? To hell with them. I DON'T fit them. And when I DO fit them, I will buy some things that are utterly flattering and don't hide this shell that houses me. It's all just STUFF. I don't need any of it.

Started to get the garden in. However, the sun and physical work got the better of me. I began to shake, and that 'oh dear I'm going to fall down' feeling hit me, I was flushed and ITCHY! So, decked out in my white doctor's lab coat (when I was training to be a Homeopath) that now serves me with it's deep pockets and white reflective whiteness, my dilly hat (from the Winnipeg Folk Festival) and my $400 running shoes with insoles (hey, gotta be comfortable)...the girls and I began putting in the garden. Green and purple runner beans, zucchini's, tomatoes (variations...even though I can't eat them), purple basil, cabbage, english cucumbers, chives and cauliflowers are now in. Lots to put in yet. But, what a good day to begin getting it in.

So thank you.

If possible, please keep my good friend Dawn and her daughter's in your thoughts today. Their community is reeling from the untimely death of a school friend. Fourteen is too young.

Friday, June 12, 2009


I'm in a pretty foul mood. I try not to go here. I really try. Because I'm really ugly when I do go here.

Not sure why I'm feeling so cantankerous but, every room in this blasted house that I walk into is a mess. Not a bit of a mess. A flaming, mad, insane, have no control over my life kind of mess. I feel like 'why bother?' because whenever I work my ass off and clean it, purge it, love it, in no time (and because no one else is tending to it except me, when I do) there are piles of crap EVERYWHERE. I'm tired of asking for people to clean up after themselves and I'm tired of not having enough energy to clean up MY shit because I've been so busy cleaning up everyone else's shit. HOW MANY TIMES DOES A MOTHER and WIFE have TO YELL!?!?!?!?!?!?!?!? Or ask. This leads me to the road of guilt trips...and I don't want to bestow that kind of legacy on my children and husband. God knows that I've had to unlearn it.

I don't like the monster I become when I'm this tired, anxious, panicked about the sheer amount of house and farm work that there is to do. Most days, I can balance this out in my head or be reasonable about it. The laundry will always be there. The floors will always need vacuuming. The desk will always need sorting. The beds will always need making. But, at this point, I have to choose planting my garden over purging the piles of accumulation that we seemed to have thought we needed over the past 6 years since living here. We moved here with 3 years of combined accumulation too and didn't have time to sort it before we had to move, so it all moved here too. You wouldn't believe the sheer number of boxes that line our wrap around porch, the driving shed (can't move in there) and now we are starting to use the barn. HOW can a family possibly need this much stuff?!??!?!

One of the problems, I realize, is that we don't say 'no'. My motherinlaw has an impeccable house but that is because she is constantly sorting and throwing out. When stuff comes 'in'; stuff has to go 'out'. It's a good system. So WHY does she think that we need a pile of her stirrup pants, tshirts and plaid shirts? I'm going to have to tell her to give them to GoodWill or Sally Ann or Value Village or the local church. We seriously have waaaaaaaaaaaaaaay too much stuff for a garage sale of our own. It would scare even the most steadfast garage saler.

The porch and our family room is full of computer bits that might or might not work. My husband is terrified of chucking this kind of stuff out or donating it. Speakers that aren't attached to anything just sitting (that I have to dust and move out of the way) or spindles of cd's that aren't sorted in ANY sort of manner in which you could actually find something to watch. Spindles of cd's are ugly. CD's in cases at least stack half decently. This same porch is home to rugs, boxes and boxes upon boxes of books, furniture that we don't have room for IN the house, trunks and boxes of clothes, boots, shoes, and, books. We don't own a single flaming bookshelf in this home and we are ALL bookhogs. It would seem to me that bookshelves might be a priority.

Every room, or space that I walk into on this property stresses me. There is no peace, tranquility, put togetherness, or pride of ownership or design in ANY space that we inhabit. What does this say about us? Or me...?

I can't do this anymore. It's all just STUFF. I mention to my husband tonight that we have too much stuff everywhere and need to get rid of some of it. He asks, like he's hurt and hasn't done anything wrong or that EVERY bit of this stuff is precious, and says "what can I possibly need to get rid of? What do I have?" Fuck man, LOOK around this house!!!!!! The driving shed!!! The porches!!! The barn!!!!!! I'm not saying this is all of his doing but I can't imagine HOW he's oblivious to it!?!?! He brought home a tv from the dump the other week, that doesn't work with any of our remotes, so it's now sitting in front of the freezer on the porch, in a space that I organized, tidied and made ready for 'shop-work' for him. Some power tools and a sturdy workspace, hammer, goggles, other tools hung nicely. You can't move over there now. AND now there's a tv on the floor in front of it all, so you have to crawl over it.

DON'T get me started on the recycling.

OR the 14 ft. cedar boat in the barn with no sails.

OR the paddleboat with the hole in it in the garden.

That's's going. We have no need for THIS much 'stuff'. This is ludicrous. In the event of a pandemic or global or national crisis, we aren't ready. We have stuff coming out the yin yang but no gallons of water or candles. HOW stupid is THAT!?!?!??!

How guilty we've been of buying into the notions of 'more' for the sake of 'more'. Now, it's clutter. And I'm suffocating beneath it.

I'll start with my stuff first.

Monday, June 8, 2009

Bone Marow Biopsy and stuff...

We have to be at the hospital by 6 am for the 7:30 am bone marrow biopsy. Having had one before with only a little local freezing and going into shock afterwards, I was pretty stressed about having to experience that kind of torture again. However, my Hematologist is knocking me out completely. SO, the procedure will be not only painless during it, but the team of doctors at St. Michael's will take great care not to have me in pain (as it's a Masto trigger...)

I just talked to the Charge Nurse (who won't be there tomorrow) but she KNOWS about latex allergies (a friend of hers has one that is as bad as mine) and says she will flag my chart so NOTHING goes wrong. She asked me if I carried an Epi pen. "I carry 4," I told her. She told me to bring them. Just in case. They should be prepared but JUST in case...this might seem silly in a hospital, but after my last knee surgery in March in Parry Sound (the procedure was fine, but I didn't do so good coming out of anaesthetic and they weren't prepared...) I'm not willing to take any chances either. I'm glad they aren't either.

So, we're heading over to the inlaws for dinner shortly, and to drop the kids off. We have to leave here at about 3 am to get there for 6 am tomorrow. The Charge Nurse told me to make sure the nursing staff are aware and check my chart AND if anything looks even remotely suspicious in the waiting room or anything, to tell them and they'll move me to somewhere secure asap.

Feel like I'm in good hands, overall. It'll be good to get this c-kit mutation over and done with.

Saturday, June 6, 2009

This is the kind of work one pig can do. We put her on the veggie garden (to be...) around May 24th and today, this is the result of her tilling, digging and eating, me giving it one till and a rake to collect the rhizomes (roots of the grassy stuff.) What's even more impressive (to me, anyway) is how we just had to shake a bucket of food for her to follow us back to the proper pig pen that we have her two siblings residing in. We would've had them all in the veggie garden but it was sooo stressful moving the one pig that day, and seriously hard work, that we thought we'd see what one pig can do. It's unlikely ANY rhizomes would've been in the ground if all three piggies had been put there. Looks like veggies will be going in this week. Just as well, we're still getting frost and we're into June!

Thursday, June 4, 2009

The Conversations We Could Have...

The Jehovah's Witnesses come by, usually once a week or so. Grace loves my rhubarb and I just share them with her. She's going to teach me to make perogies from scratch. She helped herself to rhubarb yesterday when I was out. Just left me a message on the door. I'd told her to help herself...and she did, obviously. That made me really happy. I've cut, washed, dried and bagged/frozen 29lbs of it so far, so I'm happy to share.

And the eggs, was looking like the new ladies (24 of them, minus the 4 that refused to come into bed and got dragged off by a fox) weren't laying more than 1 or 2 eggs per day. We were starting to think we'd been had or they were defective in some way. Were we doing something wrong?...Like, did we need to bring a Rooster in to sort of get them going???? And, the two eggs we got were teeny tiny. I hadn't read about THIS anywhere. Well, yesterday, I went to collect the eggs. Usually the kids or the neighbours kids (aged 6 and 3) collect them for me. Usually there's one casualty from collection clanging. First, there was a teeny egg right in the middle of the doorway, like the chicken had plopped it out like a fart and carried right on scooting out the coop door. Probably cawing, the way that chickens protest whatever it is that they are protesting, as she exited the building. The crates/boxes the chickens cozy down into to lay, had a few eggs in each mound of nest-molded hay bedding. I walked over, bent down to fetch them and found the ground crunching. I stepped back, then pulled back the bedding hay I'd just stepped on. Crushed eggshell with contents running through the strands of hay met my eyes. Crap. I quickly stepped back further and began unveiling what proved to be four layers of eggs. Neatly nestled on top of one another right outside the doorway to the lay boxes. I found 82 eggs. Crafty buggers, chickens are.

Then there's the pig. Tonight the pig, who's in the veggie garden area, surrounded by a wall of haybales and inside of that, a single string of electric fenching that is charged by a solar panel, got caught in it. She's touched it a few times and squealed in discontent. But this evening, she was so happy to see us that she quite literally hopped over the electric fencing and haybale without knowing her own jumping abilities (we were shocked too) and was soon straddled half on top of the haybale and half way falling off the haybale. I panicked.and without thinking totally shoved her backwards, back into the pen. The thought of playing Catch The Piggie didn't appeal to me at all. Mostly because I've done it and it's tireless, thankless, exhausting and Three Stooges-like. No thanks. She landed in the half-foot space between the haybale and the electric wiring. And got tangled in it. She was screaming because she was being zapped really badly. I screamed because she was being hurt and was screaming! My husband screamed because I screamed and there we were, all three of us screaming. While still screaming we both dove at the pig to help pull her up and out (knowing full well that we'd be zapped too and not really wanting to find out what it feels like) and she jumped herself up and clear of the wiring. We jumped into the garden with her and quickly gave her a rub on her back to make sure she was ok. Soon she was snorting the sounds of content piggie while we scratched her white bristly hair flanking her bright pink skin. It's been warm, pigs can burn. That's why they MUST have a shelter. Her shelter is a pile of haybales with a tarp and old kitchen door slapped on top for weight and weather protection. She loves it in there. Mostly people don't know how affectionate pigs can be. Nor did we until we moved her into the veggie garden to till it over and eat all the grass and roots. We bring her table scraps - vegetarian, our pigs don't eat meat - and she looks forward to it. Sort of Pavlovian. (Boy, that sounded pretentious, didn't it? lol.) We started giving her a back rub when she was scarfing the leftovers, peelings and stale bread. We've learned that, like dogs, if you rub their backs just the right way, they lose control over their bag legs and they drop. She closes her eyes like she's in some kind of heaven, and dare I say...she smiles. She drops her back haunches and rolls right over, giving us her belly to rub. It's soooo funny!!! They are just like dogs. Unreal. Anyway, she was ok. Phew. We'll be adding an extra, higher layer of electric fencing tomorrow. I should post some photo's of the garden when we just put her in it 10 days ago, and then what it looks like now. She was slow going at first, but she's darn near tilled that entire garden over. I'm totally impressed. We are thinking about where to put the next patch/garden ready for next year's planting.

The chickens, because they free range and forage all day, LOVE the work that the pig is doing in the veggie garden. The pig digs up all the dirt and earth, and the chickens forage in the freshly turned over soil for grubs, worms, grit and whatever else they like to pillage. Odd critters are chickens.

So, another day on the farm. I continue to learn things about co-existing with our food (I don't eat pig myself) and it seems to me that I'm becoming seasoned with the seasons around here. The Jehovah's Witnesses always ask me if I want to live forever on a paradise earth? I do, I reply, I do. They ask me if I understand what Jehovah God's plan for us/mankind is? I ask them to look around us and say, that this is it, we are living it. We
are God's plan. They ask me if I understand who is the ruler of this system; this "worldly world"? We are, I say, and we're not doing a very good job of it, are we? I know they believe it's Satan. But like Satan (of both the Bible and the Qu'ran), humankind has a choice. (And what are we doing with it?) Then I politely smile and say to them, "You don't think it's co-incidence that we are standing here now having this conversation, do you?" Grace waggles her finger at me, as she gets into the car (you can't talk too long outside up here, the black flies will eat you for appetizer, dinner and dessert and midnight snack if they can help it) and says to me that Jehovah is hard at work in my heart. That's why she keeps coming by. I remind her that she's the only people who come by. They travel in packs of two or three, so I can't say 'person'. "Jehovah loves you," she says as she is helped into the car by her husband of 42 years, "and so do we!" I gently yell back that I thought it was my eggs and rhubarb that she loves, not me. The car door shuts. She opens the window and says, as they back down the driveway, "It wouldn't be so good if it wasn't grown with love!!!" she beams. Yeah, we don't hurry things around here anymore.

So, why don't Buddhists, Hare Krishna's, Muslims, Hindu's, or other Christians stop by too? Oh, the conversations we could have....

Wednesday, June 3, 2009

Yes it is...Yes, yes it is & Bone Marrow Biopsy

My Immunologist, in Barrie, sent me to St. Michael's Hospital in Toronto a few months ago. February, to be exact. Since then (yes, same calendar year) I have seen Dr. Peter Vadas (Dept. Head of Allergy and Immunology) several times, and he's referred to me to Dr. Lisa Hicks in Hematology who's now referred me to Anesthesiology where I had the pleasure of meeting Dr. Chen yesterday. (For those of you unfamiliar with Hematology, it's the study of blood which encompasses quite a lot, including cancer and (it seems) Systemic Mastocytosis. ) Dr. Vadas, Dr. Chen & Dr. Hicks are incredible doctors. Aware that they are not Gods but being as learned as possible, they are in pursuit of excellence in their respective fields, they are compassionate, and are trying to help me.

They are in agreement that another bone marrow biospy is needed to do the c-kit mutation testing. This is sort of the FINAL diagnostic test they have for SM right now. While a final diagnosis won't change the course of treatment that they have me on currently, it will offer some peace of mind that no-one's missed anything and that THIS is what is going on with the insanity that has become my body. I haven't mentioned much that they are also testing me for some other disease that is so rare that it doesn't really have a name but is referred to with a bunch of numbers and letters only. This disease is even rarer than Systemic Mastocytosis BUT is curable. No-one has mentioned what the cure is, but apparently it's curable.

If my c-kit mutation test reveals I DO have Systemic Mastocytosis then, the prognosis for cure is grim. However, life IS possible even in the face of feeling like absolute crap. Just have to avoid 'shocking' and anaphylaxis at all costs...easier said than done with triggers like latex, dust, dust mites (those things are EVERYWHERE!!!!), massive list of food that is growing steadily (all the tasty stuff too!), pain, hot, cold, extremes or quick changes in temperature, medications, perfumes, cleaners (we're a Dr. Bronner's Hemp soap, hydrogen peroxide, tea tree oil, lemon, vinegar and water household now), some animals and some silicone products., etc. Especially "etc.". The list is all together too big to note here right now.

If my c-kit mutation test reveals I DON'T have Systemic Mastocytosis, there is a fear that I have some "orphan" disease of my own...because SOMETHING isn't right. I've asked if it's possible that this is all in my head. Apparently, it's not. Not with what my body has been through and experiences. (So,...I'm NOT crazy?!?!!??!)

If my bone marrow biopsy reveals I have this other disease, there's a cure.

So, that's where I was at when we headed south to Toronto yesterday to the pre-op department at St. Michael's hospital. The real meal deal here is that there is a TEAM of doctors working together to help me at this hospital.

Dr. Chen opened the door with my file in hand, introduced himself and said he had read the lengthy file on me, and sat down. He looked at me with pity. Nice pity, if you know what I mean. And then told me that Systemic Mastocytosis is "life-changing". Er....yes, yes it is. I was confused. This doctor KNOWS what my life/our life has become.?! Different. Changed. Altered. Other. Uncomfortable. Painful. "You know Masto?" I asked, confused. Was I really not going to have to try and explain this disease to this doctor and hope that he would believe me that he really needs to call my Immunologist and speak to him about what's going on with me? "Horrendous disease," he quipped, "Life-changing." Er....yes, yes it is.

"I thought I was here to test to see if I have this disease, not that I have it." I replied.

He said he's not an Immunologist or a Hematologist but he's read the file, chances are good I will test positive but we'll see and that Dr. Hicks (it notes in the file) has already spoken to me about this. Yes, yes she has. He told me that Dr. Hicks is a wonderful doctor and she knows what she is doing. I agreed. He said her notes were pretty strong and we need to behave as IF I HAVE Systemic Mastocytosis for this test and anaesthetic because, chances are good this is what ails me,. So precautions, markers and preparations need to be made because this is rare, and serious. Yes, yes it is.

He then said it's an insane disease because it's one disease where getting upset can actually kill a person because sufficiently triggered, mast cells behave in these insane ways in a person with Systemic Mastocytosis. Add this, he went on, that for me, latex is a massive trigger, so that combined with getting stressed or upset can be detrimental in an O.R. SO, they are having me first thing in the morning and will prep the room without latex and let it sit and 'clean' overnight. First patient of the day in that room. SO, their job is to make me as comfortable as possible; I am not to be stoic and am not to permit myself to be in pain (they can help me) because pain is a trigger as the body has it's own stress-response to pain and THAT is massive in and of itself. And, bone marrow biopsies are painful. No two ways about it. Unlike other people who've had or can have lidocaine or local freezing to assist with the perception of that pain, I cannot. All terrible triggers for me. And, have hurt me/created reaction in me before. So, he said sedation and pain management post procedure were crucial to pulling through this well and without incident. At the end of the day, we want no incidence. Agreed.

It hadn't occurred to me that pain IS a trigger.

He said he had a good idea about what medications we could use and not use to sedate me but would check with Dr. Hicks/Dr. Vadas. I told him that Dr. Vadas has a list of medications not tolerated well by Masto. patients. The list comes from Michigan and Dr. Cem Atkin's office. I coudn't find my copy of it (think it might have got left with my Emerg. Room file or Patient File when I was in my local hospital last month for 4 days (well 6 days, if you count the two and half days in and out of Emerg.) So I pulled from the Mastocytosis Society in the USA's website Dr. Maria Castell's Emerg. Protocol for Systemic Mastocytosis and/or Mast Cell Disease and the printout on Anaesthetic on the same webpage. He asked if he could keep them. I said I'd brought them for him. The pages noted their sources. I was relieved he wanted them. He also told me that there's a good chance he won't be my actual Aneasthetist next Tuesday, June 9th, when I have this bone marrow biopsy done, BUT would write a detailed letter outlining what needs to happen with this/with me. He trusts his colleagues implicitly, he said.

It was so nice NOT to have to convince a doctor of the validity of this disease.

I feel so incredibly lucky to be living in Ontario right now, with this care team. St. Michael's Hospital and the University of Toronto have every right to be proud of three of their doctor's. They are doing their best for me. And, Systemic Mastocytosis. I appreciate it.

I was really worried about having this bone marrow biopsy because of what happened with the last one, in October, in Parry Sound. I've written about it in a previous post, so I'll spare you the details. But, I was not looking forward to this test without freezing or painkillers. Wasn't actually sure I would be able to go through with it. I don't say that about much in my life. Never have. But THAT was doing my head in. Dr. Hicks says it would be "inhummane" to do a bone marrow biopsy like that. Dr. Chen said he once had a patient, with Systemic Mastocytosis say that a bone marrow biopsy was like the torture machine on the movie The Princess Bride when Weslely is being, well, tortured and he lets out that primal scream that is the scream to end all screams because it's the cry of man who's lost his true love...THAT is the kind of pain a bone marrow biopsy without freezing, sedation or painkillers is. And even with sedation, Dr. Chen said it would hurt coming out of anaesthetic because there is no freezing in the area. He said that drawing out the bone marrow is like that Princess Bride scream because it's the "core of a person", just like the touch those things is to "mortally touch or wound a person" and it is excrutiating. So, it's going to hurt real bad afterwards so, I'm not to be stoic. No body or emotional stress over pain. He would order epi, benadryl, ranitidine and steroids on order for post procedure too. He knew I would need an iv line for all of that going in. I am to take my ketotifen, cromylyn and meds with the tiniest bit of water and let them do the rest.

So...that's the deal. I had intially thought going all the way down to Toronto for a pre-op would be a big waste of time and an emotional drain. It was anything BUT that. The nurses who did my physical were gentle, awesome and incredible (had to get nasal and anal swabs because I've been admitted to a Canadian hospital in the past year...swine & avian flu and SARS...thank you. The nurse gave me the swab and said I could go to the loo and do it myself if I wanted. Yes please. So no embarassment, discomfort or lack of privacy. Thank you.) I walked out of there with a sense of calm and trust. My husband remarked, "that went well." Yes it did. Aside from the anal swab. Yes, it did. Worth the trip.