And Yet Still Celebrating...

Yesterday my sister and her family drove in from the Interior and we got to start Christmas celebrations all over again. Turkey, stuffing, mashed potatoes, corn, spinach arborio salad, trifle, cheesecake... yummy! Matias chose not to eat a single bite of dinner. My nephew recited the whole Christmas story by memory. Presents were opened and we ended the evening with Dance Kids on Wii (started off by my parents "wiggles"). We had a downright hilarious evening. It is so good to have all of my family here.

Today was back to radiation and a doctor's appointment. Between everything, I have eight appointments this week and lots of babysitters and chauffeurs for help. It's part-time job.

I also get to just chill, love on and be loved on by my family. Thoughts of this potentially being my last Christmas still hover in my thoughts but if this is my last Christmas, I'm going to go out with a bang and lots of celebrations!

Tonight was Albanian food! Flija, sallat, ajvar, dhe speca e pjekur (a layered crepe-like savoury dish, cucumber, tomato & onion salad, spicy roasted pepper paste and roasted peppers). Yummy! My sister helped and is now an expert at cooking flija... and she hadn't every eaten it before!

Enjoying family & feeling very blessed.

Flija

Family

Grieving

Grieving is a difficult journey. It can consume you. It can destroy you. It can be healthy. It can be ignored. It is a process.

Today I'm remembering my aunt -- a woman who loved life, hurt deeply, and was a Mother Goose to her flock. She loved music and used her gifts to bubble up passion in many a student. She died extremely unexpectedly two years ago. 

While that might seem like enough time to grieve, I still see the pain of losing a sister in my mom's eyes.

I don't have anything profound to say... just that for those of us that are grieving someone or something that was cherished and significant, I'm hurting with you.

My Mom & Aunt

How do I go into Christmas celebrations this week?

There is a certain amount of heaviness in my heart. More than likely this will be my last Christmas. I have already been given this miracle of time and am incredibly grateful for what I have.

My heart is burdened for those right in the middle of the storm due hospitalizations, death, broken and hurt relationships and fears, and the hunger, hatred & violence around the world don't really warm my heart either.

So what can I do and how do I process all of this?

Pour out as he poured out.

Bless on someone else. Douse them with something unexpected -- a cookie, a coffee, an email of encouragement, picking up the garbage of their front lawn, baking something they love, praying, letting them know how much I love them, just being present with them in spirit.

That's my plan for these celebrations. It's just to try and be present with those in my life. The bacon may burn, the present might not come out completely as I'd prefer, we may say things that we probably shouldn't have... but let's try and be present with those whom we are with and just pass on a little more of the love and peace that little baby in the manger has given us.

Merry Christmas my friends!

P.S. Our boy decided the candle at the end of the service last night was for him. Before the usher even got to our seats to light our candles...he'd blown hers out! She regrouped and when the appropriate time came, he blew out his candle with clapping & cheering. We all just sort melted into convulsions of giggles and joy in this much anticipated part of the service. That's my boy and he brings me much joy!

Day One of Ten

What a crazy day!

Awake way too early. Had breakfast & coffee with my husband. Radiation first thing this morning. The mask still fits. Three more plates of Christmas goodies delivered to some special people in our lives. Then dad & I off shopping to get the last gift ticked off the list. At the same time I found out that the digital optical cable I'd been fighting for over ten months had safety caps on them (who knew!!!). Came home to presents on our front porch and an encouraging Bible verse. A brief rest. And then our dog escaped out of our back yard. Three of us out on search. JR found Xhevat (I got my exercise and my legs felt like jelly... but I climbed the hill back up to our house while dad and Xhevat searched for me and walked me back home!). And my boy is in a very aggressively, snuggly mood (tough love, right?). 

It's now only 5:00 and I'm tired. There will be no Wii U Dance Kids in our house tonight.

On to a hopefully more restful evening, a night of rest (hopefully) & day two of radiation... what a crazy day! 

They may look like head phone covers or ear plugs... but don't be deceived! They are safety caps that come on the end of a new digital optical cable (NOT the actual end of the cable). If you get a digital optical cable in a present for Christmas, please save yourself ten months of frustration and just remove them before you try to install your cable.

Totally not in focus but just so stinking adorable!

I'm Giving Up

I know I've expressed this but I just wanted to share that having that mask made on Thursday changed my heart.

Going into my appointment I was fearful, frozen & questioning. I felt anxious, terrified, and on edge about everything. I snapped at my parents. My patience was very short with Matias. My text messages with Xhevat were sharp. My sister was on the receiving end of my uneasiness.

It came down to: do I trust Him?

That mask made me choose and it was one of the scariest moments of my life. While surrendering under the discomfort of the mask and hands, I made a choice (again) to give up... to stop questioning and fighting and to let Him be and do.

Physically I know I'm declining. My muscles are weaker, I'm tiring more easily (although I can still go to church, lunch & shopping), my body is changing with medications and treatment. I know I'm going through a lot but as long as I have a fully functioning brain/emotions, that does not give me the right to treat my family rudely or disrespectfully (I'm very thankful for their grace and forgiveness with me). Self control and my relationships are too important.

Spiritually, I either choose to live in Him or I take control. I'm trying to continually give up & I had to force myself to do that under the weight of the mask.

I have experienced such peace and freedom since giving up under that mask. My smile is true and brighter. And His names on my wall remind me of just a few of the promises He is to me through these days. His peace, comfort, joy & hope are unashamedly imprinted on my heart.

I can breathe more easily.

This is what I want and need for Christmas... not the turkey or cranberries, not the presents under the tree, not a specific day of the year, or dare I even say, not even the family. Those traditions are wonderful and it would be very different if I didn't have them... but right now I just desperately want that little Baby in the manger in my life.

I am in awe of how He changed my heart under that mask & through His names.

Radiation in 2 1/2 hours: here's to a mistranslated saying (tshirt from the same giver of my boob & ovary cakes... I love my friend) and moving forward in His love. Bring on radiation & Christmas celebrations!

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

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.

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.

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

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.

Home

Just another 4 hr ER trip today. Bloodwork, X-rays, fluids, pain meds, antinauseant. Only three pokes in total today... so that's decent (seven pokes in seven days this week!). My symptoms couldn't all be accounted for... but such is my life with cancer.

They sent me home with an IV hoping that it will it will last until I have an MRI tomorrow. Xhevat and flushed it tonight. Then Wednesday I have another appointment with a new radiation oncologist.

We've had a bunch of really big ups and downs this week and are emotionally and physically and spiritually tired. There's lots to absorb and work through and we don't want to cheat the process of working through these emotions. At the same time, life is continuing... our marriage, Matias growing up, Xhevat's job and his responsibilities, Advent & Christmas, family near and far, and just the regular joys and struggles of life. Please pray into these areas of our life.

I'm learning to expect the unexpected with my health... while living in the reality of my disease process... But yet all with the knowledge that God can do all things. 

As I left the house today, I said my goodbyes to my son, house, and my dog... just in case. I set out my boy's pyjamas so that they'd be ready for him even if mama wasn't home tonight. And I also reemphasized the fact that I still ams a full code. I still feel like I've got more in me to give. I'm getting more placest to involved in... So Daddy, Loving Father, help live more for you with the peole in my life. Help me to become a reflection of the you. 

Very glad I also got to say my hi's again this afternoon when I got home, for my neighbour who took care of my son while she had family visitors herself  and for my parents who are here to take care of all of us.

What a crazy, confusing world we live in. So happy to be going to sleep in my own bed with my family close tonight.

Good night world. 

My IV

Back to the ER

Had a fabulous day yesterday. Church service, small group, a rest & Xhevat's work's Christmas party. A very full & happy day.

This morning I woke up with different neurological symptoms: puking, sensation changes to my unaffected leg, worse pain to my head, etc. I called into oncology nursing line when they opened. After the nurse spoke with three of my oncologists, they suggested to come into ER and they'd want to get stuff figured out.

Xhevat came home from work. A wonderful neighbour is watching Matias. My parents were already planning on coming down and are on their way. So all our physical needs are met.

What can you do? Pray... for peace (that we can honestly work through our feelings before God) and, as always, we are asking for complete healing. Thank you.

Last night (he won a Wii)! Great Home Depot party!

Today (in ER)... I made him smile because I was smiling under the mask.

A Quick Trip to the Emergency Room

I had another disturbing night last night. This week my headache & vomiting have been different -- worse. So finally last night after vomiting yet again, I called the oncologist on call for opinion. She told me to go in to Emerg. 

Just before my youngster's bedtime the three of us packed into the car for an unknown length of stay at the hospital.

To make a long story short... I had my 15th CT and nothing looks bad enough to need to intervene immediately. An MRI will be done to my head this week as it can see my brain better than a CT (but a CT could be done immediately and a MRI would take some time to organize). I also got some IV pain meds, an antinauseant, and fluids. And in the Christmas spirit, I gave some blood and the results we were looking at are all within the norm for me.

We got home at 1am (oh and did I mention our boy did not sleep at all at the hospital?), we were tired. The boy is always wanting to be a part of the action (as his mama shakes her head) and it took him a bit to calm himself so that he could sleep.

I'm thankful for our healthcare system, the just over four hour ER visit which answered a bunch of questions and hopefully broke the pain and vomiting cycles, and for my family that didn't want to just drop me off/come back later but waited with me through the good and the bad of an ER visit. Plus I'm also thankful that I only needed to two pokes last night (one for bloodwork and one for the IV). Hoping for a better week this week than last. And praying for a safe trip for my parents tomorrow.

I was complimented last night on how well that I had put on my mask (apparently I'd pinched it nicely and effectively over the nose). Oh if he only knew that I can tie the isolation gown's tie behind my neck and put on and remove gloves safely as well!

My boy trying to escape out the back when reclining in his stroller. He was pretty decent through our stay... it was only after midnight that he started to get antsy.

Advent Chemo

Being dependent on others for babysitting and rides while I have my appointments has been interesting. I've had people offer to help from Vancouver to North Van to Lynden (and that doesn't even begin to included my family from Kelowna)! And I've gotten to spend time with a bunch of wonderful ladies (and my dad) who I probably wouldn't have been able to spend time with otherwise. This has been an incredible privilege for me.

I haven't been feeling well this week. Between my worries, delayed chemo, a headache, back and muscle pain, some vomiting and lack of sleep, I've just felt sort of trapped and scared.

I rallied up my energy for yesterday and I tried to have extra fluids on board as I knew I was to have at least two pokes. To get an IV for my last MRI took three people, five pokes and one nerve was hit which is very painful (it was the first time I cried when being poked). A friend and fellow nursing student that I hadn't seen for 14 years drove me and it was great to catch up. I was also very thankful to only need one poke for the IV infusion.

Getting my bloodwork was a bit more of a challenge and as is me (pick whatever part of me you desire... nurse, type A, stubborn, crafty, fearful, etc.), I was trying to find a way to get my results as quickly as possible. 

Well... 

1. I forgot my requisition at home so I couldn't get it done the same time as my infusion. 

2. Matias had fallen asleep late (as he was late getting his nap due to my infusion) and so we had to wake him up later than usual.

3. Then I had to find a clinic that was still open past 4.

4. The clinic was empty except for one other person and as I heard the back door doorbell (for the courier) ring, I was rushed into the back to draw my blood so that they could send it off with the courier! As we were in our car in the parking lot, we saw the courier van leave with my blood in it. 😊

5. I tried to access my results online last night and forgot my password. Three attempts and the account locked... so I got locked out (and the telephone help lines were closed)!

So I had no choice but to let it go & wait until today to find out the results of my neutrophil test.

(A little lesson about neutrophils... neutrophils are a type of white blood cell -- part of your immune system -- and are one of the types of cells that are destroyed when you take chemo. When you have a low number of neutrophils, it's called neutropenia (noun) or you are neutropenic (adj.) and this is why people on chemo need to avoid germs -- they have a very poor immune system which makes them much more susceptible to getting infections as they can't fight them. And when they get sick, they can get VERY sick.

A normal number for a healthy adult's neutrophils is 2.0-8.0x10*9/L. My last week's neutrophil count was 1.1. This week I was hoping for the minimum of 1.5 so that I could get my chemo. It hasn't been the greatest week so even getting the bare minimum would be fantastic. I also found out that I am very unaware of what's going on in my body. Yesterday my neutrophils were 3.5! So I got to go and pick up my chemo this afternoon! This just goes to show you how incredibly horrible I am at reading my own body.)

Advent is a time of preparing oneself and eagerly anticipating a BIG event... remembering Jesus coming to earth as a little baby boy, our Emmanuel -- God with us. I'm taking this cancer journey as my advent -- preparing myself and eagerly anticipating an even BIGGER event... Heaven and living with God forever. Until then, I'll keep on living fully and eagerly anticipating.

Making my chemo into an Advent Chemo Calendar (back of calendar)

The front of my calendar with one "treat" consumed. And thanks to Nicole and Lisa for the advent chemo and colouring ideas respectively. I love their creativity!

What I Have Survived Since Feb 12, 2013

(in 221 Appointments)

IVs (successful) x 77

Bloodwork (successful) x 81

IVs or Bloodwork (unsuccessful) x 15

Biopsies x 13 (I think)

Chemo x 17 cycles including:

IV Chemo x 29 doses

Oral Chemo x 644 pills

Bone strengthening infusions x 23

Injections x 9

Brain radiation x 5

Other radiation x 3

Tattoos x 6

MRI x 3

CT x 14

Ultrasound x 3

Xray x 7

ECHO x 1

Surgery x 2

Minor surgery x 1

Days in hospital x 9

Parking Ticket x one given incorrectly & almost another one

Dropped

I've been having some down days lately... trying to stay away from unnecessary germs but loving the time with friends and family. I'm trying to get lots of rest and good foods into me so that my immunity will be stronger and I can get some chemo on Friday.

Our trees are up (Matias has his own tree that he's allowed to touch). I'm very glad we don't have any glass ornaments as I'd turn into a nervous wreck with my boy's curiousity of the new addition to our living room.

I used to plan ahead, but these days my schedule is rather last minute and planned around appointments. By any chance, would you be free and able to drive me to either of my appointments?

Thurs. Dec. 4 from 11:15 to 2ish

Fri. Dec. 12 from 10:15 to 12ish

Thank you for you continued prayers.

The first ornament on the tree (dropped)