As for Today

So, let’s just dig in. I’ve been fighting with a slight issue of nausea which is to be expected but for the last 24 hours it’s been nausea and a sore abdomen. That too is to be expected from the radiation but it’s all a big pain (ha in both meanings!) I need to take anti nausea meds and now pain meds which cause even more nausea all of which make me sleepy. It’s going to be a bit tricky to find the exact right combination of everything so that I don’t have to spend the next three weeks in bed. Needless to say, today has been a more difficult day so I’m going to keep this short.

Thanks again for all your comments and requests, how fun is that! I’ll try to address the question of what I’ve been up to since high school tomorrow. Do feel free to drop requests anytime.

As for today I’d like to answer another question that perhaps several of you have. Hope you don’t mind me sharing it ;-)

“I wonder when I read your blog sometimes, is your typing part of bringing yourself to a positive place of peace, part of the working through thoughts that keep you trusting or are you really that positive naturally?”

The answer is actually – all the above! I try to live in a positive state as much as I can but I do have those hard days, those days where you just want to scream and punch a wall. Usually though, those who love me don’t let me stay there for too long, they point out the good stuff and that helps refocus my perspective. That brings me to an issue I’ve had to deal with and try to work through for 17 years (since my first cancer experience) It’s hard to watch someone you love struggle and there in lies a huge challenge for both the person who’s sick (or whatever) and those who care about them. There’s a delicate balance between helping someone stay positive and letting them grieve when they need to. For the better part of 17 years, my experience is that people generally don’t like to see others struggle; they want to swoop in and fix it or at least distract you long enough to see you smile again…knowing you’re ok makes them feel better. They don’t realize they may be squashing the process you’re going through. It may have its place when someone is wallowing but in my case it caused deep heart wounds that were only revealed this time round. Because sometimes you just need a good cry fest. My experience with this has shaped the way I deal with all grief and only in the last couple of years have I realize I wasn’t “dealing” well in a healthy way. As I mentioned in a previous post I still can’t really cry in public …don’t want to make anyone feel bad. Crazy crazy I know…I still have a ways to go.

Hmmm, where did that come from? As you can see the blog is definitely a place of processing for me as well. It causes me to think things through more than I might usually. I look at what I’m feeling and try to identify the real source and not just whatever it was that triggered it. Never the less, I hope that answers your question, all be it in a round about way. Mostly though, I hope it helps people see that even the eternal optimist will always have their down moments no matter what they say.

So much for short ;-S

I must sleep now. Nighty night!

Thankful Fors!

Beloved Friends
My apologies for not posting much this week. Here’s an extra long post to make up for it.

I’ve been enjoying getting used to relaxing. You’d think I’d have that down by now considering I left work in October but it turns out it’s an elusive state for me to get used to… until this week :-) The week was full of ups and downs, much a repeat of last week’s posts. I was able to get out to the beach for about an hour a day (any more than that and I’d fry, even with skin that loves the sun). Duane and I had BBQ on the beach twice as well – truly beautiful!

Radiation treatments are becoming normal and the ladies that work there are amazing! Today was interesting … the power went out for the whole cancer agency. Doctors, nurses and patients were all just hanging out, it was rather an odd sight. I went to the mall across the street for an hour and upon returning my radiation therapist said that they’d be down for another few hours. Thankfully I was allowed to skip treatment today and just add an extra one on to the end. Hanging out at the cancer agency all day wasn’t my idea of a good time, regardless of how awesome the staff is. To the beach! Hehehe

As for todays post I’d like to do some “Thankful Fors”. It all started with my sister and her kids. “Let’s do thankful fors” one of them pipes up as we’re eating dinner at mom and dads one day. Naturally it was thanksgiving I believe but it’s been something that stuck for a while. So here are some of mine…

Carin’s Thankful Fors…
I’m thankful for my hubby Duane! He’s the best hubby ever! He’s so understanding and encouraging. Talks me down and helps me refocus on what’s important when the hard bits appear. He’s taking really really good care of me – Thanks hun! You da bestest!!!


Location, location, location! The picture above is a street I get to drive everyday.
So despite being away from all those I love in Abbotsford (and Yarrow ;-) I’m beginning to love the area. Really, how can’t you when you’re minutes away from the beach! Are you seeing a theme yet? Can you guess where my new happy place is? THE BEACH! Wanna come for BBQ some day? You’ll see what I mean! And the people watching…fascinating!
It’s not only the beach that has me mesmerized. The Nitobi Garden (pic below) at UBC is …well…beyond words. It’s my favorite place for contemplation.

We had the distinct pleasure of sharing it with friends Andy and Jacquie on Monday (pic below). Thanks so much for coming to visit you guys! We had a really great time! Yay!!! (That’s me being thankful!)

Which brings me to loved ones! That would be you! Family and friends, church folk and fellow Samuel’s Mantlers. I miss you all like crazy. I have received so much love and encouragement via emails, cards and comments – thank you thank you! God’s got me surrounded with the most amazing people and I am extremely thankful for that!

I would be remiss if I didn’t make mention of the new old friends that have touched base with me via this page. Ladies I once knew from many many moons ago, those good ole high school days. Thank you for your comments! I think it’s so cool and your interest tickles my heart!

Treatments! Yes I know that may sound odd as cancer treatments are generally no fun but I am SOOOO thankful that they exist, without them I might not. I bless those that work in giving them and those who work at creating better ones. THANK YOU!

(Don't worry, I am still wearing a tank shirt in the picture below...that's me seconds before a radiation treatment.)
In this section I have to make mention of Paul. A 77 year old man I met yesterday in the waiting area of unit 5. He’s a volunteer who brings a cart of coffee and treats all around the agency on Thursdays. He is full of life and love and is more than happy to share his story. He was once a patient here and had to go though 37 treatments. He says “I'm ok as long as I’m wearing this coat (indicating his volunteers vest) and not that one (pointing at a hospital gown like thing that's used for treatment) ” I had opportunity to visit with him briefly and he was quick to thank God’s grace for his recovery. “I’m a Christian you know” he continues. The exuberance in which he shared his faith was awesome! Nothing pushy, no bible thumping involved, just a man thankful and excited about life and wanting to shout it from the roof tops. I don’t have that gift of boldness but seeing his excitement made me ever so slightly envious. For your contagious exuberance, Paul I thank you!

Thank you all for sharing in my journey. Till next time...May you and yours be blessed!

Carin on Kits

The breeze off the ocean
So clean, refreshing
The sun beating down
So warm, enveloping
The sand conforming
So perfect, relaxing

To find a place like this
Untouched by man’s hand
Would be paradise!

Alas, I am not alone
3 o’clock and all of the west end descends

Hollering teenagers
Music blaring
The party begins

Coarse mouthed burnouts
Partying too
Smoken up a storm

The wind and water act as a megaphone
Forced unintentional ease dropping

A Buddhist monk walks by
And why not?

A clash of the worlds on Kits beach
The only words exchanged
“you’ll never move that log” and
“sorry man” when a football goes astray

Everyone so different
Yet all congregate for the same reason
Warmth, beauty, community = the beach

As for tomorrow
I arrive earlier
With my iPod

Yesterday's News

What’s this feeling? A funk? Melancholy with a dash of anger thrown in just for fun? What kind of cruel joke is that? You’re just sitting there minding your own business doing what you can to be up beat and happy and then Blamo!!! Out of no where the funk hits you, no warning, nothing. You know the day, where everything that usually bugs you is just mega amped up and there’s nothing you can do to change your mood. Those little things…the car in front of you doesn’t use his signal (I hate that!), road construction on every freaken street you drive on (that would be the entire West End), getting the wrong order at the drive through and only realizing it when you’re on the freeway, forgetting your hair dryer in Vancouver. Kay, so that last one won’t apply to most of you but you get the idea. No matter how much chocolate you eat or shoes you buy, you just don’t feel better. For the record I didn’t eat a pound of chocolate or buy a bunch of shoes but my point is, you know nothing's going to help. Usually feeding me works (yes I’m one of those) but even that doesn’t help. It’s one of those days you wish you had a really fast car to hit the freeway with, no one around, no cops, just miles (sorry, Kilometers) of empty road and a full tank of gas.

And NO I’m not pms’ing…I know you were thinking it!

So I’m sitting in the church waiting for Duane’s Aunt’s funeral to begin, writing this on a little dingy scrap of paper in an attempt to get it out of my head (who knows maybe it’ll help) Then the song begins. “It is well, It is well, with my soul, with my soul. It is well, it is well, with my soul…” (you were signing it weren’t ya?) And then the waterworks begin. My heart screams “but it’s not! It’s not well with my soul! I’m angry! I’m tired! I’m weak! I’m sore! When will this ever end!?!” Although crying is completely appropriate at a funeral, I wasn’t prepared and found myself crying and snotting on everything and feeling so very alone. With the ever so faint bit of brain power I had left I thought “where would Jesus be right now?” Sure enough, He popped up beside me with his arm around me. (side note: for those of you who think that’s a strange thing to say, we can talk and I’ll explain it or you can just read Brad Jersak’s book “Can you hear me?” All I ask is that you keep an open mind and remember this is my experience and not a theological debate. If you’re looking for that I can direct you to some pretty cool and very super intelligent friends of mine.) Where was I? Oh ya, Jesus’ arm around me…it brought me comfort for a few seconds but then the thought pops into my head “this is a funeral, these people are grieving and you’re thinking about yourself. You’re wondering where Jesus is for you right now and they just lost their mom/grandma/friend. Isn’t that selfish of you….” and so on. Normally I would have given that a bit more thought and perhaps even bought into it for a little longer but today I was at the end of myself and I didn’t even have the strength to buy into the lie that the nasty little guy on my shoulder was trying to serve me. All I could do was cry.
Turns out that’s exactly what my heart needed. Just as quickly as the funk landed it lifted and was gone. Hmmm, fascinating, but mostly...I’m just thankful for the relief.

Three down...17 to go!

Hello Friends!

To my pleasant surprise the radiation technicians that work Unit 5 (that's my unit :-) are truly amazing! So far I've worked with Kim everyday this week and then Chrystal and Joan as well. They are so kind and friendly! Now that I'm over the initial shock and unknown of radiation treatments, visiting with these ladies is a highlight and gift! Cool eh!?!

Oh get this!!! I'll be getting copies of some of my CT scans and guess what I'm going to do with them? Hehehe You guessed it! There going up here. To quote my friend Marcia, how super mega awesome cool is that!?! Talk about vulnerability...you'll be able to see my insides, literally! Hahahaha, I just love that. Leave it to Duane to ask if we could get copies, I would never have thought to ask. So that's something to look forward to and perhaps keep you coming back to check it out. I took some other pictures today but realized I forgot the computer connector cord for the digital camera so it'll be one more day of just text.

Ok, so now that I've had three sessions I should probably address that.
The first session went fine, I was just a bit nervous because this was my first experience with radiation. I was nauseous that afternoon but since the nausea hasn't returned I suppose it may have come from something else. Makes me happy!
Session two was more difficult for me. It was a really busy day and by the time I got to the hospital I was exhausted which seemed to amplify everything. Let me explain...you're not normally supposed to feel the radiation because it's just concentrated x-rays. As for me however, I could actually feel the tumor throbbing when receiving the first beam. With the second beam I could feel my skin sort of tingle and burn a bit. Thankfully I didn't feel anything for the third beam. Perhaps I should explain the different beams as well. For each treatment I get three beams of radiation that are directed into my belly from three different positions, one from the left, one from the top and one from the right. Each beam has a different dose so they run for different amounts of time anywhere for 40-60 some odd seconds each. Clear as mud no doubt. As for the afternoon of the second session my belly was rather swollen. You know, it's weird to feel swelling on the inside of your body! All together my body felt a bit off, I can't describe it any better than that. I blame all these odd sensations on having run myself down before treatment. Like my body battery was empty and I couldn't do anything till it was recharged. Even receiving the treatment this day was too much, I was just done and my emotions surfaced while lying on the table. Couldn't do much about it though, I have to lie perfectly still during treatment and besides, they have cameras on me...can't let them see me cry. Now don't panic, I cry, I just prefer it to be in private mostly. Except for that one day in church, wait...make that two. Actually I cry at church a lot but usually it's a good kinda happy cry. In retrospect that bad day I had in public (as I tried to explain it) surprised most people, I guess they hadn't really ever seen me like that. Hmmm, does that make me fake or private or just a generally happy person? Hang on a second, I can cry in public when it's bearing with someone else, I guess it's just my own stuff I don't go public with...she says as she's writing a very open and honest blog. WEIRD!!!

Sorry about the rabbit trail folks, now back to the topic at hand. Session three, being today, went seamlessly. No odd sensations during treatment and so far no side effects except for feeling a little weak. So now I know that I do have to get quality sleep and eat reasonably well and I should be ok! Who would have thunk it?

As for tonight, Duane’s back off to Abbotsford with my furry and slightly prickly friends. His 90 year old Aunt’s funeral is tomorrow and rather than fight the morning traffic he decided to head out tonight. That’s right, I’ll be at his place and he’ll be at mine. I’m finding my reaction to the whole thing rather strange, I’m sad and a little angry. It’s all really irrational so maybe I’ll just chop it up to the fact it’s been a hard week. Ya, it’s all kinda backing up on me now rather unexpectedly. I guess it’s time to go press into Jesus.

Good night all

31 Flavors & Miscellaneous Ramblings

It’s been a day full of emotions, perhaps even 31. Let’s see if I can do a quick run down.
Morning – weary but good

Mid Morning at Cancer Agency – Happy and spreading the sunshine! Am a bit nervous about getting my first ever radiation treatment. Still find myself utterly amazed at the beauty of the day.

Lunch – feel normal (as normal as I am anyway) Happy to organize Duane’s bachelor pad to accommodate me and all my girly necessities. Get frustrated when I look for a bible verse and the concordance in the back is of no help.

Afternoon – Hmmm, what’s this? Nausea?!? Bummer, not so soon!!! Mega disappointed and worried what this may mean for the 19 days ahead as side effects can be cumulative.

Early Evening – Still nauseated but happy to eat the awesome dinner Duane made – yay! He’s becoming quite the chef!

Evening - driving to Abbotsford to finish up some things that need doing tomorrow. I find myself disheartened that I have to leave Duane’s place. I’m suddenly saddened and overwhelmed with the question “how can we work it so we can be both near each other and near the other things we hold dear (i.e. job and community). Didn’t expect that one to come up so quick! Ah but driving for an hour gives you lots of time to ponder and do some house cleaning of the brain. I’m disappointed that I can’t help out with Murray’s conference as much as I’d like to this year, I was really looking forward to that. The nausea is back and that worries me again. I walk into my empty apartment and find myself lonely because the usual company, my cat and hedgehog, aren’t here. Finally, relief - the Gravol finally kicked in!

All in all I’m mostly apprehensive about all the unknowns I have yet to face.

So that may not list 31 but still, it’s been a draining day. I’ll try and tell you more about the actual treatments tomorrow.

I’m hoping to add some pictures and more interesting stuff than just text in the coming episodes but I'm still setting up my user on Duane’s computer properly so I have access to all the things I need. That wraps it up for today, sorry about the mess of thoughts but I gotta hit the hay! Sweet Dreams!

Can't Sleep

Alas she can not sleep
She lies in bed eyes closed, in vain
If only it were sugar plums dancing in her head
Her mind simply will not rest
All the things of the day flood her thoughts
Perhaps she could have said this differently or not said that at all
Wait she forgot the night time meds
Her mind pushes ahead to all the things to do tomorrow
Unpack, get organized
This should go there, that could go here or maybe here
Does she drive all the way back home early to finish up the chores
Or does she leave it for another day
After all, no one would blame her.
Her mind takes her everywhere but 11:30
Why?
Is she avoiding?
Is she afraid?
No, more disappointed
She wonders "how should she feel?"
But quickly remembers "shoulds" have been banished from her paradigm
A better question perhaps "how does she feel?"
It feels like nothing
Is it numbness or peace?
She thinks peace but can't be sure at this time of night
Sleep! She'd really rather be sleeping
Instead of analyzing her feelings, in vain

Entry #2

First of all I’d like to thank everyone for the kind words of encouragement! Feeling so much love and support really does make this whole thing a lot easier!!! Again, thank you!

So I’ve spent the weekend prepping and packing to head out to Kitsilano. Oh, for those of you who don’t already know, I’m moving in with my hubby Duane who lives in Kits during the week because he works at UBC and the 4 hour a day commute is just insane. That’s the short version anyway ;-) His apartment is only 10 minutes from the cancer agency at VGH so that’s uber convenient! Oh and it’s only blocks from the beach – yay me! I know which happy place I’ll be spending much of my days! Tell the truth…aren’t you just a little bit envious now? Ya the radiation sucks but that’s only an hour out of my day, the rest of the time I can read at the beach or spend some quite time at the amazing Nitobe garden at UBC. Anyway, you get the idea. Mind you, ask me how I feel about that in two weeks time when the side effects kick in. Na, I’ll just enjoy the dreamy bit for however long it lasts. Wouldn’t it be cool if I didn’t get any side effects at all? Feel free to pray for that if you like!

Most of you already know this from emails I’ve sent out but for the sake of a complete story on this site I should dispense with the technical info regarding treatments. Again, forgive me for the duplication; I’m tired of hearing it too! Radiation begins on Tuesday and continues for all the following weekdays until 20 are complete for about a month in total. The treatments are for an abdominal tumor, Fibromatosis to be exact. In short it’s a re-growth of what put me in the hospital two years ago. If the treatment works and shrinks this 6 cm tumor they will likely go after some of the other smaller ones that are scattered throughout my abdomen. Bummer, I know, but I choose to not worry about that yet, life’s too short to bother! Perhaps I’ll be miraculously healed by then. Now that would be a God Story ;-)

So what do you guys think about that anyway? Miraculous healings, that is. Some people say that you are healed when you have enough faith. I’ve heard it said or rather read that you’re ill because you have a bad relationship with your father, fix that and you’ll be healed. (Ummm, nope! My dad’s my hero! I love him tons and we’re good so that’s not it!) Others say it’s about God’s will and timing (I’d agree with that one but it’s still to fricken broad.) And yet others want to get rid of your demons. (Demons? I have demons?) Yet through it all, some people are healed and some aren’t. For some the meds work and for others they don’t. Some are blessed enough to be cured the first time forever and others struggle with it their entire lives.

Then what is to be said to those of us who seem to carry it over and over and over again?

Physically? - Go organic, that’s the answer! No, it’s just expensive. Take this green powdery stuff, it tastes terrible but it cures everything. How about the juices, ah the juices. Mangosteen and Goji and Pomegranate Oh my! Yes, they may work a bit but what they’re best at is relieving you of some of the weight of your wallet. But who cares anyway, the air we breathe, the water we drink and the food we eat are all poisoned in one way or another so what hope do we have? Oh, I guess I’ve hit the little cynic in me. (yes I have one too) I don’t give it much surface time but every once and a while it pops up like an ugly zit you just want to squish. (what a visual, hehehehe). I don’t ever hover there for long although after 17 years the whole thing can be disheartening and really really tiresome.

Spiritually? – I know there’s lot’s of encouraging words in the Bible but what do you do when it’s not enough, when the words are empty and hollow, when nothing makes sense??? You go into your meeting place, bang on Jesus’ chest and cry on his shoulder till you fall asleep. Ya, that usually works.


Let’s see if I can’t spin this to the positive a bit. Amidst the anger and frustration I have seen loads of amazing things come from my family’s medial “experience”. I wouldn’t change mine because most of the time I can take comfort in having experienced first hand the notion that these things are shaping me and those around me. Really and truly, I wouldn’t give them up. The good stuff definitely outweighs the bad.

Let me share just one example. Only a few years after my bone cancer, my three year old nephew was diagnosed with leukemia. He was so precious to me it was like he was my own. The news of his diagnosis crushed me completely. I thought I had some kind of unspoken deal with God that my medical crap was it for my family, like I went through the stuff so now my family was safe. I have no idea where I came up with it but somehow it was ingrained in my head as fact. What did I know, I was only 19. Thankfully I couldn’t see into my future! Anywho… one evening at my sister’s place my nephew was hanging out in the kitchen, probably waiting for “cheese from the fridge” his favorite snack at the time. I look over at him and he got this frustrated, angry, I don’t know what to do with myself expression and started to cry. I knew that look! I knew that helpless anguish and it all flooded back. I went over to this little boy I loved most in the world and held him because I knew. I knew exactly how he felt in that moment and I could hold him, love him and know! At that moment I knew that if this was the only good thing that would come out of my experience, it was worth it.

Wow, I didn’t realize how much that story still affects me. Yet over ten years later I can still say the same thing. Sure there’s been other good stuff since but that precious moment is carved in my heart and I wouldn’t trade it!


Alas amidst it all, the good and difficult, the question remains and will to the end of days. Perhaps the only answer is as Brad once said “How long Lord?”

Blessings to you!
Carin

Where to begin?

As you saw in my intro, this is how I hope to process my third experience with cancer treatment. I feel like I’m supposed to share this journey with unbridled honesty yet I’m not completely sure why. Just the idea leaves me feeling rather naked and exposed. Though this little page won’t even be a blip on the world scene, stepping out in vulnerability for anyone to see is a scary thing no matter how you slice it! Alas, I feel I must so here I am emotionally naked and unashamed.
… Ok, well not so naked today, this one’s more about background info. Enjoy!

Third cancer treatment….that’s correct and would you believe that they are individual instances which are not related and not hereditary, as far as my doctors know anyway. Yay, I won the lottery! Wait a minute, that’s not the one I wanted to win! Yes, my doctors are dumfounded and my family is tired.

Some of you reading this have been with me since the first occurrence 17 years ago, but I’ve probably only gotten to know most of you over the past couple of years so I’ll give you a brief history to help with some perspective.

At age 15 I was diagnosed with bone cancer in my right knee which resulted in a very difficult year of 12 chemo treatments and an above knee leg amputation. Think Terry Fox and you’ll get the idea. On the bright side, my sister’s kids love taking me into class for show and tell! Fun fact - they used to pull the legs of their Barbies and say “ look, now she’s just like auntie!” but I digress…

December 2003, 13 years later, I was diagnosed with Chronic Myelogenous Leukemia (CML for short). Because it was my platelets that were affected rather than my white cells (another oddity) a bone marrow transplant would have been even more risky than usual. Thankfully there was a new “miracle drug” which I could simply take at home once a day. The only tricky thing about that is it’s not a cure, it only stops the gene mutation while you’re on it and then you hope your body doesn’t become immune to it over long term use. Before this drug was introduced the survival rate was listed as 5 to 6 years. The long term prognosis with the new drug is unknown as it hasn’t been around long enough to have any stats. Though quality of life has really been quite phenomenal on this med, really you wouldn’t have know I was getting chemo. In short, life was normal.

On November 21 2004 abdominal Fibromatosis (or Desmoid tumor) entered the mix when a grapefruit sized tumor burst and bled out internally nearly killing me. This one’s quite a long story so perhaps I’ll expand on it another day. In short, this stuff has grown back and has migrated and multiplied, hence the need for radiation and of course the reason why I’m writing here now.
For those you who are curious enough to think about googling it, here’s a little more info.
Desmoid tumors are classified as somewhere in between truly benign tumors and the malignant tumors. Desmoids are not truly benign because they are locally aggressive, but they do not metastasize like malignant cancers. The bottom line is that whatever you call them, desmoids behave like cancer and are treated in oncology.

Now then, how’s that for a start? It’s mostly technical background this time but I thought it important to lay down the history of my experience so you’d have a glimpse into the bigger picture. It may also help make sense of things I write in the future.

And there you have it, my first ever blog entry. It’s so liberating! Well, not really but whatever.

Much love to you all and thanks for joining me on this journey!
Carin