One Day

This is a picture of my youngest cousin Robyn. While she is only in grade five she has been my sanity since we arrived in Calgary at 7:00 Christmas morning.

So what can I do? What am I supposed to do?? I have no idea. I am at a loss for words. I have no idea what to think, what to say, what to do, where to go, whether to suck it up or to hide under my hat.


So what am I doing? Allowing Robyn to cling to my side. We have played almost 100 games of pool in two days, darts, almost every board game in their closet, made cinnamon buns, watched Christmas movies, and coloured. We have gone for walks, sent emails, and taken Booker the Bear for a small tour of the Christmas lights.

Is that fair? No. Not at all.


However I am reminded of a song entitled "One Day I Walk" sung by the Rankin Family (written by Bruce Cockburn) where the chorus goes:

One day I'll walk in flowers

One day I'll walk on stones,

Today I'll walk in hours,

One day I shall be home.

Days spent in Calgary in a life which is not mine at the moment, pretending that everything is healthy and wonderful and I am bald by choice... are days of walking on stones. If I walk for hours, I could get away from here and return home. Hmmmm....

What makes me... me?

Okay so I may have broken a few rules, but everything is okay because they are only really guidelines (or so I am telling myself). BUT, it was all for a good reason - in order to finish Christmas shopping, I had to at least start it. So, that is exactly what I did. I started my Christmas shopping. Now I won't say who my partner in crime was, as to keep them from getting in any trouble, but just picture this...

We went into this outrageously overpriced store so that this person could get something for someone on their list. The store was not only insanely overpriced, it was crazy busy. As an attempt to hasten the waiting around, I kindly offered to wait and hold a spot in the line up while this person went to look for the Christmas-list-item. So there I am, minding my own buisness... when all of a sudden, this person returned to take their spot in the line with me and the world stopped.

Just as a side note, you need to know what I was wearing. Or, you don't need to know, but I wish to share.

Wearing blue (women's) pants from MEC, I had a pair of running shoes (again, women's) on my feet as to keep them from hurting with all the walking... I had my winter coat on (style? Women's) as well as nice sweater on underneath that (a sweater that you wouldn't be caught dead in if you were a guy). I was wearing my ball cap - not because I thought it would look "cool" but because I wouldn't be caught dead wearing a fleece pink hat in public and risk being seen by someone I know.

Anyway, so there I am, standing in this line up - when my partner in crime returns with the "to be purchased" items. The woman who was standing behind me in the insane line up (who was also holding a spot for her friend) makes the comment, "Oh, excuse me... I'm sorry, but the line up is all the way back there" pointing rudely to the end of the line which could no longer be seen. In response, the person I am holding the spot for motions towards me as to say I'm with her. This lady pipes up again and says the most dreaded 4 words anyone has ever heard spoken before...

(Please brace yourself... the words will not be spoken again...)

"OH! You're with HIM!"

In the spur of the moment, instinct told me to jump this woman... to beat her legs to a pulp and leave her on the floor in the pieces that she just shattered me into. I had the sudden urge to plug each one of her hairs from her head - hoping that the pain might just skim the hurt she inflicted.

However, the person I was with had their arm around my waist and had pulled me to their side so fast, and so strongly (this is not a force to be fought... they are slightly stronger than what I anticipated) that I truly couldn't have turned around to beat this lady if I had no other purpose in life.

What is it that makes me who I am then because a certain office-occupier down the hall continues to reassure me with the words, "you are still you"... but events like this, really make me wonder.

The last time that I checked, I was not a "HIM." Perhaps I need to check again. Nope, definately not a "HIM"...

So because I do not wear high heels, a bottle of perfume, two canisters of hairspray (although there are plans to use that much if that is what it takes to re-attach the strands of hair in time for Christmas celebrations), disgusting old lady clothes, or huge dangly earrings, I am not a HER??

Well then, apparently I have been a HIM my entire life. Why didn't someone bother to tell me sooner so that I could have adjusted to the fact that I was a HIM and not a HER and everything would have been just fine.

I somehow think that these are not the standards. So I went back to the drawing board.

While there have been huge internal changes as to how things look and feel, the only thing (other than occasional flushed skin or bruises the size of Ontario) that is visibly different is the fact that I no longer have hair or eyebrows.

Therefore, I hereby solemnly swear by anything important and valuable - even if it is only my fish Jeremiah - I will have hair for Christmas.

I will hot glue gun it, white glue it, tape it, gel it, hairspray it (even if it requires 2 cans of it), velcro it, or sew it back on (yes, I am willing to boil water and soak a needle and thread and sew each strand of hair back onto the outer layer of skin on my head, even if it may lead to some bleeding - at least there will not be any infection!) OR any fine combination of these things. I am willing to experiment and willing to go where no HER has gone before!

Wish me luck.

Calling for your help!: The Littlest Twinkle.

The Littlest Twinkle

I have to be honest with you. There was one person whom I was absolutely terrified of. Perhaps it was my upbringing in the Roman Catholic Church and the frustrations and instilled fear from the Archbishop of Edmonton, or perhaps it was the simple fact that I truly respected her so much, I feared doing wrong.

I now work for the Holy-Mitered One as well as greatly respect the person she is and the inspiration she always seems to provide.

I have provided an entry of a recent phone conversation (or a small portion of it) following this blog and could share so many more.
Bishop Victoria is truly my hero.

Such a wonderful woman, her weakness is that she gets this little twinkle in her eyes before she says anything really important. I felt of all the pictures I have with her, (including the wonderful one from my reception into the Church) this one shows particularly well the “I have something really important to tell you” twinkle. As Bob McKeon was lining up to take the picture, only having met her once, she leaned over and said, “We are taking this one for Archbishop Thomas Collins” and before the next said, “and this one for the Pope.”

And people say that she doesn’t have a sense of humour, HA! I personally find her hilarious – perhaps because we both take the road of the “dry” form of humour… who knows.

What I do know is that over the course of the past month, while there have been moments of, “I hate it when you are right and so I am frustrated with you right now because that is all I can do” there have also been those great lengths of silence as I sit there and chew on what she has just said in awe of the fact that she has read my mind, my fears, my heart and has done so, so very accurately.

She knows when to cry with you or when to tell you an outrageous joke – she knows just how to hug that (even though you doubt) you know that everything is going to be okay.
She knows what to say to keep you going, way long after you can’t and she knows when silence is making a stronger point than words. She has a way of putting perspective on the situation at hand that I could never do on my own and there is something about her tone of voice that makes you trust deep down inside that she just might know what she is talking about.

Rumor has it, on her way to the airport, she actually made a stop at the Cross for no other reason than to share an Episcopal hug with a terrified young patient who wanted to be anywhere else in the world.

She has given her promise to have fun and enjoy the Christmas vacation, asking last night about a possible field trip to Elk Island Park.

She knows.
She is more than “The Bishop”
She is a knight in God’s armor, crusading against all that hurts, is evil, or is just downright crappy.
She provides sources of continual warmth to survive the long, cold, somewhat sleepless nights.
She takes you under her wing and on the occasions where it is too crappy, too scary, too exhausting, or too difficult to proceed on your own, she carries you – if not in prayer, in person.
She reassures you of the wonderful rejoicing that can come of the healing power of Christ, even when your eyes fill with tears when you read it and your heart with fear.
She gets the littlest twinkle in her eyes and you are warmed to the core and “know” deep down inside that everything will be okay… you witness the love of God and the compassion and healing power of Christ in that twinkle… and best of all, when the world seems like it is against all odds of making things easy, it is that twinkle and inner strength that you can fall back upon and truly trust.

I know that she doesn’t have a computer at home and that she knows nothing of this blog to read or check what is happening on computers in the airport, (as she can do with the Diocesan webpage – funny story for another time) but if you see her or talk to her or send her emails, if you could help me out – that would be awesome. If you could please pass on the very important message, I would really appreciate it.
“Someone has a message for you Bishop, rather simple but rather important: Thank you!”

Thank you for your help!! Hopefully she’ll understand if she hears it enough.

What I can control...(or lack thereof)

As I lay here under a quilt, an Oilers fuzzy blanket, my flannel/fuzzy blanket, a quilt and an afghan with a toque pulled over my ears, two pairs of socks, flannel jammies, mitts, and a hoody, I have reached the conclusion that I have no control over my body's temperature.

As tears slowly roll from my eyes to my pillow, more rapidly picking up the pace as the night progresses, I understand the concept of being 'emotionally uncontrollable' because I couldn't make them stop if I tried anything else.

As my thumb lingers around my mouth and my spare hand goes straight to my hairless head, I finally comprehend the fact that I have no control over habits that have been strictly formed in the last 21 years.

As I lay awake until the wee hours of the morning, trying to figure out where I went wrong, what I did that was unhealthy and trying to label some form of cause-effect behaviour because that is easier to cope with than accepting the fact that this whole disease and course of treatment is by mere chance and a bad luck of the draw, I surrender to the thought of having control over my thought patterns and stimulation.

As I wonder and worry about people I have spoken with throughout the day and those that I haven't, concerned that I said the wrong thing, was too impatient, or just didn't have the gumption to pick up the phone and try to explain in detail how I feel or what my day has been like, I struggle to accept that which I can not change.

However, I have control on my attitude in which I start the day with, the presence and grace that I execute my routine with, and the perseverance that I "walk on" with in spite of all odds. It's not a lot, I know... but it's something. It is the only piece of control I still have in my life and so you can imagine the horror when someone tries to tell me how to go about one of these aspects of daily living... tries to dictate the minor details. If only they could have the grace to go through that which they can not control, everything just may be managable. Not ideal, but managable. Instead, perhaps in trying to fix their past or paint their future, they decide the life decisions of others.

If only they would have known, they would have realized that they are not alone.

They don't have that right nor that priveledge. They have a match and are standing on the bridge they wish to burn. If only...

A Night Prayer

Now I lay me down to sleep, I pray the Lord, my hair to keep
To guide safetly through the night and in my head in mornin' light.
And if I die before I wake, I pray the Angels my hair to take,
To mend and fix and spray back on - so when I'm buried, my hair can grow on.

"If you can't say anything nice...

then don't say anything at all."

Although I was not particularily a fan of Bambi when I was younger, this phrase has more meaning now than it ever has.

Today there was a particular individual who seemed to feel at liberty to say what was on their mind, but they felt it was important to say it directly to me. I won't disclose the circumstances, nor the individual who is being discussed, but I will say that I am left - sitting here completely shocked and appalled. Perhaps a little hurt or offended if I stew any longer. While the phrases were split up into different parts, this person knew darn well what they were doing, saying, and harming in their path of destruction.

Then again, perhaps I am the one at fault... I blog my thoughts, frustrations, concerns, queries, tears, and strength as though no one else is reading it. I speak words of truth and honesty, attempting with the most grace possible, to carry on with my head held high.

They seemed to think otherwise, and voiced those thoughts.

Do I have to like this? No, and I am not the person who will pretend to like it. Does the fact that I hate spending my mornings hooked up to an IV at the age of 21 have anything to do with rebelling against anyone in particular? No, but anyone in my position will rebel, I know that for a fact. I spent a good chunk of my morning crying and mourning the loss of what I thought was a friendship when the Holy-Mitred one, who slightly less liked by others out there, told me that she reacted the same way... while being much older and wiser.

I acknowledge the fact and would like to say that there are moments when I don't wish to talk to people, see people, or be told what to do by people who really and truly - have no idea what walking in these shoes is like.

I don't need pointless advice or hurtful and rather direct words shot in my direction, which I think - is the same thing that Thumper was saying. So, if you can't say anything nice (coming first hand from someone who has been hurt by the words of others) then please don't say anything at all.

Until later,

Sorry for being too honest in thoughts and feelings.

My two cents worth

"A penny for your thoughts, a quarter call, and all of your mama's love" is a line from the famous "26 Cents" song by the Wilkinsons (an awesome country family that sang and recorded together).

Well, feelin' awfully frustrated and not at all insightful, I figure that I get 2 cents worth. After all, I make the rules on this blog, right? While this is my grandmother... I didn't have a picture of me that looked somewhat insightful... sorry.
(I do have the Willis ears though... so it could be me... I guess)

While journalling some thoughts this evening, I couldn't help but bring to mind the last two weeks and how long they have truly felt (MJ, if you are reading this, the length of these weeks has had nothing to do with you or the upper (or lower) room siblings - but a long two weeks, full stop.)

It was two weeks ago today that my mom (biological - just for clarification because there are other motherly types out there, not wanting to confuse them with anyone) met me at the Cross Cancer for the first time. It was the first time they stole vials of blood from me, without so much as my permission, (I think I defaulted all decision making when I agreed to the treatment) and the first time that I passed out while getting the permanent line put into my chest. While it has been a source of bragging rights to my pals, I am going to be thrilled to see it go.

It was the first time that I heard my mom utter the words that I know have been on her heart and lips since last July, and the first time I chose to ignore what she had to say, or pretend to ignore it. And just for my own sake, let me restate the obvious here (with thanks to MJ for helping to articulate it)... this "Albert" disease was something that I had no control over or signed up for. And, most importantly, my mother was horribly mistaken in her view of God - this has NOTHING to do with what happened last July at Christ Church on the 16th, in the presence of "family" and friends, and kneeling before the Holy-Mitred One and being presented by Chocolate-addicted and Priestly-Mountainly type. Leukemia is not a form of punishment, penance, or in response to a mortal sin. If these were true, I would of had to commit a mortal sin... I assure you, I am saving those for when I am ordained in 20 years time...

Within the last week, I have had to admit (not to her, but to myself - which may be harder than you think) that Priestly-Motherly type was right. All the hair has gone. PEANUTBUTTER-SHMAKLE! Why couldn't she have been wrong? FUDGE!!!!! I hate this! Every part of it. And acknowledging that someone else was right all along... when we sat on the couch and she said, "It's all going to go Angela. It's all going to fall out" while I sobbed hysterically beside her. "No. You're wrong ---------. And whatever falls out will be glued back in. But you're wrong."

Well, if you are reading this, priestly-motherly type... accept my apology. You were right and I would have done better to have believed you then. It may have saved the endless nights since as I cry into my pillow that there is no hair to play in, to twist, to smell. Instead, it is wrapped tightly in layers of kleenex for the moment that MJ agrees to tape it, glue it, poke it, spray it, or hold it back on my head where it belongs.

It has been 10 days at the Cross with Charlie, my cabbage patch or Booker, my bear - clutched so tightly in my hand that if I forget to straighten my arm every now and again, it begins to hurt.

It has been in the last two weeks that food has gone from having absolutely no appeal whatsoever to... SWEET! It's time to eat!! And, then back to...meh!

In two weeks I have argued more with certain people about piddly little things like starting my day, drives that result in left turns rather than right, and drinks of choice (or breakfast or lunch or supper), than I am sure they have ever argued before.

Platelets, infectionette's, hand sanitizer, lysol wipes, juice until I just want to throw the cup into the air and take bets on how it will land, and Christmasy paper chains that are longer than I care to describe here and now.

Am I supposed to like this? Is this what I am supposed to be grateful for to God everyday, each morning - asking only for the grace to go through the day with my head held high? Each night, thanking God for the strength to run, not walk? HA! Over my dead donkey.

I am done. This is frustrating me more. Two days left... joy! I guess what I need to be thankful for is that I will be done for Christmas. I can celebrate the true miracle and invite him into my life once again this Christmas time without sacrificing fine motor skills for the shakes, feeling cold 24/7, or taking horse pills every six hours.

God help anyone who even THINKS about bringing this up for another round. I will have their head. I am ready to have my life back, and I am ready for it now. Forget this three month crap. Two more days. That's it. Just TWO MORE...

Booker is the biggest lil' bear closest to the lamp. In his short lil' life he has met a lot of people and been a lot of places. He has been to work and met all the staff of the Cathedral and the Synod Office, he has met my favorite prof and has even met all of those whom have been formentioned on the blog. Daily, he comes with me - clutched tightly in my arms - to the Cross.

Normally, he is quite the lil' flirt - getting "coo's" from the nurses and other patients.

However, today he decided to behave like a radical. When I was told that my day was going to start off, not with a blood test but with the injection of someone else's platelets... he just sat there.

I tried to fight it - I really, really did. Eventually, I lost the battle. My arm was taken, stabbed with the iv needle, and I just had to lay there... completely helpless as someone else dripped, drop by drop, into my fully established and perfectly fine blood stream. With each drop, a piece of my own identity was lost and a tear shed.

And what did Booker do? Sat there, smiling innocently, allowing this all to take place.

I am on the home stretch and they had to shatter that with the events of today. Do you know what I get to look forward to on Wednesday? The testing of the bone marrow!! Which, truth be told, has got to be THE WORST and most horrible feeling procedure in this whole thing. That's okay... if I will it not to happen, it won't.

Or at least, that's what elder-english-crazy-hat-lady promises...

It's all about cookies. Nothing else in the world matters.

Just kidding.

As you can see from the picture, all the hair has gone and there remains... well, nothing. There are tiny bits of my eyebrows left - if that is something to brag about.

Alison (and I suspect MJ had something to do with it) arranged an afternoon of cookie making - we made cookies without eggs... delicious shortbread and gingerbread.

As I sit here - the day after - and look at the lil' men that we decorated, I can't help but smile.

Each decorated cookie tells a story... each will tell you of how it was squished between two sheets of wax paper and mushed until it was "flat enough" with an empty wine bottle. (No, we did not consume the wine ourselves... there were youth at the event...), and then each will tell of how they were so brutally cut from the paper stencil and slowly and painfully separated from the paper once they were cut out.

Then, they will share with you the story of enduring a great heat... a huge adversity and trial period. Sure, it only lasted 5-7 minutes, but that didn't make it any more enjoyable at the time, did it? Then, if you are listening carefully, they will tell you of how they were pulled from the warm oven - a place of comfort they had now grown to love - to be smeared with sugar and water and coated with a new outer layer... the delicious candy and their life was filled with pleasant company once again.

Whatever the stories of these cookies are, however different they begin... one thing is certain: each and every cookie has a smiling face when it is done. Some with smarties, others with sprinkles.

Why? Well, because I made them that way. That's just the way that cookies are supposed to be. Will I be smiling by the time the week is done? Will I have the strength to run 5km? Will I be able to say that this has all strengthened me and I am ready for the next haul, whatever that may be?

Hmmmm....

The wonder and awe of Christmas lights...

I felt like I was 12 again... Booker in one arm and a mini hot chocolate in the other. There was snow on the ground, Christmas carols playing on the radio, and I was in the company of 'older-sister-who's-leaving-in-a-few-weeks' as we drove through the park in a state of awe and excitement at Christmas lights. It was such an experience, I am getting excited by just thinking about it.

I have spent two nights up thinking about it and re-living the excitement. There were soliders, elves, animals, candles, the Nativity, sports... there were lights and decorations for everyone, every age, every race or religion. There were moving ones and stationary ones. Some of the bulbs were no longer lighting up, but you could still tell what the decoration was and what it was doing.

The timing of the lights was so amazing. They could simulate a football player kicking a ball through for a field goal, and on the other side, the ref would raise both hands in the air to mark success. Or a squirel running through the trees, or Puff the Magic Dragon waving his tail to you... there were no limits to what these Christmas lights could do.

(Are you ready for it... here comes the geeky, nerdy, "I work in the Church" part of the blog...)

These lights, these decorations... are really not that different from us. Sometimes, for reasons unknown to us, some of our bulbs are temporarily burnt out or not shining as bright as the rest of us. That's okay. Why? Because God can still use us in other ways to further the kingdom of God here on earth, perhaps even enduring onward with burnt out lights to strengthen our message of love and forgiveness.

The decorations that move remind us that we need to trust God's timing. If we flash our lights out of order, our movements won't make any sense. If we trust God and light the bulbs he asks to light, when he asks us to light them (or the reverse, trusting that our darkness does not mean our demise)... everything will turn out beautifully. With God, how could it not?

I hit a wall this week. Questions and frustrations surfaced when I met someone who thought that my spiritual journey was one that he could join at any point. Why me? Why now? Why alone? Why do tears burn when they fall? Why this? Why here? Why weakness and fraility? Why? But really, all I need to do is trust. God will work through the lights that aren't working as well as they normally would because that is just what he does. It is God's timing that will bring me through this in a state of grace and presence, and I need to trust that.

Meanwhile, the question I need to ask myself is: What can I do to further God's kingdom - right where I am?

He will do the rest... that is what makes him AWESOME!