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.