Friday, 19 December 2014

Names on My Wall

I've been wanting to change the the words on my wall from our birthdays (Tt is for two...). I wanted something to celebrate Christmas but didn't feel like "merry & bright" or even "love, joy & peace" hit the mark this year. Yesterday I found the words, or I should rather say names, for my wall. The names that Jesus was called in the Bible in the book of Isaiah. I am so encouraged by my new reminder of Christmas. 

As I proudly texted off a picture to my sister, she was sitting outside her girls' dance studio about four hours away. The girls were worshiping God through dance to the following song. Both my sister and I couldn't help but be overwhelmed by the moment. Two sisters, miles apart and yet being comforted & wrapped in the same blanket of God's love and care.

This is the song my sister was listening to (at this site on YouTube): http://youtu.be/uuDI-sk2nJU

These are His names on my wall (and what I was staring at):

Immanuel
God is with me. I'm not alone. What better thing is there to know that I have companionship on this journey? I have the God of the universe with me... how absolutely, amazingly incredible is that!

Everlasting Father
Forever in the past, present & future, I have a nurturing, caring, loving Daddy. He has always been. He is with me right now as I'm writing this note on my couch. There will never be an end to Him. He will not run out or expire. He will always be. I am His precious baby girl.

Mighty God
All power & control are in His hands. He rules over all. And as His child, He is more than able to do all things. He can see the big picture when I can't even see my foot to make a next step. And He's God... the Big Guy, all powerful, all knowing, Creator, the Alpha & Omega, the great I am!

Wonderful Counselor
Both I and my heart are so extremely important to Him. He is moulding and shaping my heart and soul into a new figure that looks more like Him. It hurts to be carved, broken and transformed but it is for the best and He will be in control of and perfect each cut. And I will become whole and complete and perfect as I let him discipline and heal and recreate me.

Prince of Peace
My heart fearfully fights & flee. He makes me bow my knee (or just simply collapse from the exhaustion of battle) before Him. He must reign. His reign does not incite trembling or terror but rather love, justice and awe. His peace is foundational to our existence.

My new wall art & encouragement (thanks to my hubby for helping me cut out & place letters)


What I Have Survived Since Feb 12, 2013
(in 228 Appointments)

IVs (successful) x 81
Bloodwork (successful) x 85
IVs or Bloodwork (unsuccessful) x 18
Biopsies x 13 (I think)

Chemo x 18 cycles including:
IV Chemo x 29 doses
Oral Chemo x 736 pills

Bone strengthening infusions x 23
Injections x 10
Brain radiation x 5
Other radiation x 3
Tattoos x 6

MRI x 4
CT x 16
Ultrasound x 3
Xray x 8
ECHO x 1
Surgery x 2
Minor surgery x 1

Days in hospital x 9
ER visits x 3

Parking Ticket x one given incorrectly & almost another one

Thursday, 18 December 2014

It's Time

I went in for radiation planning today, had a CT of my head, and they made a mask of my face (the mask gets strapped onto the bed and immobilizes my head while getting radiation; there's less of a margin of error with whole brain radiation on my second time around... so the solution is to get really good pictures & be as precise as possible by making sure I don't move).

The process goes something like this. A piece of plastic is heated in hot water and when it is malleable, it is placed across your face and clamped down to the table for a few minutes until it cools and hardens.

It may sound simple enough but your entire head is literally smothered in a wet, thick plastic sheet. I could breathe through my nose but not my mouth. I couldn't open my eyes. It was difficult to swallow or even give a guttural "uh-huh." The plastic part under my chin dug into my throat. And then they applied pressure to shape the plastic to your face -- it felt like four hands restraining & assaulting my face & neck.

But yet it was strangely calming at the same. I had a choice. I could either fight it and freak out or slow my heart and surrender into the discomfort. I slowed down my breathing, pretended I was getting a facial at the spa, and just repeated back to God what I know is true of who He is.

It's time. Time for more radiation... whatever the consequences may be. It's time to turn the page and start a new chapter. I've been given much and so I will try to give back as much as I'm able. It's time to let the uncomfortable be what it is and give up fighting... let Him be in control again (as He should be).

I'm sure that I will wander off this path of peace but I'm on it right now and I'm content to be here.

It's time. Bring on another CT tomorrow and radiation on Monday.

One last breath before being...

Smothered.

Getting locked in.

Fighting fears.

Surrendering.

The end result.

Big Decisions

Last week when asked if I wanted radiation, the answer seemed obvious. Of course I do. I'm not done yet. I don't think I'm at the point of saying I'm through with treatment. I feel too "good."

But then I was reminded of whole brain radiation and the potential side effects of having it done the second time. There are a lot of nasty things that could happen. As a matter of fact, it's about double the chance of them happening as I'm having it a second time -- a lot of things that could make life & celebrating Christmas very difficult.

Originally my radiation oncologist talked about starting radiation the week after Christmas -- to enjoy these days. Due to my symptom progression over this past week, we asked if I could start earlier. My medical oncologist suggested that I stop chemo in light of my upcoming radiation. Today, they'll start with my radiation planning (i.e. they take images & measurements of my head to program the machine to irradiate my whole brain). Monday I'll start actual radiation. We don't know if this is the best decision or timing but it's hard to feel my cancer slowly taking over my body while I simply wait to celebrate a day's event that can be celebrated any day!

Only time will tell if radiation will give me a better response or longer length of quality life. Or perhaps the symptoms & side effects will be worse and I'll wish I'd waited. As far as Christmas goes, I am celebrating no matter what or when. More than likely, Christmas will look a little different this year.

I'm nervous, unsure, and wanting to get on with things... and so I bake.

One of my coping strategies... baking.

Sunday, 14 December 2014

Promises Fulfilled

Today was the first time my boy performed on stage (well, the first time he was invited to perform anyway). He went on stage bravely with other 2 & 3 year olds and sang the occasional word as his parents and grandparents beamed with pride and giggled with joy. One was recording with video, one capturing it on camera. I put my phone down and just watched. It was my first time seeing him with his peers sharing about Jesus. Our desire is that his love for Jesus and sharing Him only grows in Him as he grows. What a privilege to see this little guy learn about God & what Jesus has done for us!

But I also wept as I sat there. More than likely, this will be my last opportunity to see him in a Christmas play. This breaks my heart.

The name of the program was "Promises Fulfilled" -- the promises about Jesus made throughout the Bible are true and completed (except for the ones that haven't happened yet). The kids shared Bible verses and four of the hundreds of promises that Jesus fulfilled. Personally, it was a great reminder of why I don't have to be afraid of my future. Because Jesus came to earth, died, and rose again... I have been offered life forever with Him. What more can I ask for? What more do I need?

Physically, emotionally & spiritually, it took a bunch of energy today to get our family to church today (with my little boy in an adorable outfit)... but it was worth every minute of reminders of "Promises Fulfilled."

My favourite picture that I've seen today... a volunteer pointing out where mama and daddy were sitting. He saw us waving and gave us a huge smile. Mama loves her boy so much and couldn't have been more proud of her boy.

Saturday, 13 December 2014

How are you doing today, Krista?

I'm doing well considering all that is going on. Of course I'm sad and grieving, but I'm still alive and living.

Physically, I'm tired. It could be the cancer in my body, brain mets, steroids, narcotics, chemo or a two year old boy. I sometimes feel light headed or nauseated or a throbbing headache. Sometimes my right ankle loses sensation for a few minutes. There is almost always a little bit of a headache and ringing in my ears and my spine just isn't comfy. Having said that, I still managed to squeak in a 3-4 hr shopping trip on Thurs, have some guests over for dinner yesterday (with the help of my family), and go out for dinner with my husband today.

Emotionally, there's a lot going on. I know that stage IV cancer and death usually go together and have accepted that (although I do continually ask for a miracle). I'm trying to take the time I need and do the things that I can do to help prepare both my family and myself for my eventual death. That's just the way I am (practical, controlling, etc.).

Spiritually, I'm ok. I ask God "why me?" but I also say "why not me?" We're human beings who've messed up God's perfection. We deserve a lot worse than we have... so why not be thankful for today and for all that we have.

I hope this journey isn't about me or my cancer. I just want God to be made known. He has given me hope, love and joy and has promised me a good future. What more can I ask for?

Thank you for praying for me and us especially today. We feel it.

My newly coloured Chemo Advent Calendar for the next week of treatment

Wednesday, 10 December 2014

Not What We Wanted

Not the news we wanted.

The good news is that the "floaters" and one of my brain mets are stable.

The bad news is that two more brain metastases have grown in size and my spine is worse.

Because of my symptoms, the plan is to repeat whole brain radiation starting the week after Christmas. Side effects are usually worse the second time around with whole brain radiation. They can include nausea, vomiting, brain swelling, memory loss, and dementia.

We are sad.

Right now I'm in a place of... this just sucks. I'm sitting in a sad place and just want to stay here for a bit. At this time, I don't really want encouragement or positive thinking. I just want to start processing this hurt and start this new grieving process. Can you please do this with me?

I still have hope and am still asking for a miracle.

He fits in the Wii box

Another "Big" Day... Maybe

It feels like another potentially big day in this household. Mom and dad have appointments this morning. Xhevat has a big day. Matias and I are chilling for the morning and then dad will take me to my doctor's appointment with a new radiation oncologist for the results from my CT, MRI and bloodwork.

We could each use your prayers. I will update this blog with today's news as I'm able (A delay in responding doesn't mean something bad; I might just be distracted with celebrations).

Yesterday in the MRI.

The "cage" on top of my face and my original "chemo socks" in honour of my friend's mom.

Checking out the Wii together. The little one wasn't sure where to look... the TV or handset.