Community

It's been a tough week to say the least. Two IVs, bloodwork twice, two missed IVs, eight nights in hospital, five days of full brain radiation, an MRI, minor surgery... you know just another week.

But in these eight days I've had so many conversations & opportunities which have impacted my life with hospital transfer attendants, porters, phlebotomists, a unit clerk, nurses, doctors, cleaners, maintenance, a social worker student, a chaplain, physiotherapists, an occupational therapist, the lunch ladies, and many more.  I've had the opportunity to share my heart & had my heart heard. It has been good.

My heart has celebrated a new life in a friend's family and has broken over another's new cancer diagnosis and his new path.

I was reminded last night at my dinner table (I was out on pass and had mom make comfy homemade Mac 'n Cheese) of living in community. Two friends popped over to visit and we could just sit down as a big family and eat together and be together. It felt so normal. I love normal and doing life together.

It's been hard for this stubborn, self-sufficient caregiver to admit that I need help and ask for it. I'm learning and trying to ask for help as we need it.

I'm so thankful for the improvement this past week. I still have some difficulty with enunciation at times but there has been great improvement this week. I'm still weaker physically but have enough strength (and decreased brain swelling) to get around semi-independently. I cannot drive. I'm not able to fully care for myself or my family. And I don't know how long I can expect to be as good as I am now or if there will be more improvement or decompensation.

We've received more difficult news today and are processing our options. We need your prayers and are thankful we are living in community.

Celebrating discharge from hospital and finishing brain radiation with DQ Blizzards

Some big laughs over celebratory pizza & samosas tonight. His laughter was infectious & refreshing to my soul. Such joy in the midst of gruelling times.

What I Have Survived Since Feb 12, 2013

(in 167 Appointments)

IVs (successful) x 62

Bloodwork (successful) x 68

IVs or Bloodwork (unsuccessful) x 14

Biopsies x 13 (I think)

Chemo x 29

Bone strengthening infusions x 15

Injections x 9

Brain radiation x5

MRI x 2

CT x 9

Ultrasound x 3

Xray x 6

ECHO x 1

Surgery x 2

Minor surgery x 1

Days in hospital x 9

Parking Ticket x almost one

A Scary Week

It's been a scary week to say the least. I've gone from a mom with a headache to an inpatient with brain metastases and a walker.

My mind is clear and functioning; my words and movements just jumble out like I'm in a drunken stupor. Occasionally I'll get frustrated when washing my hands or putting on my shoes and one occasion I even sent the food cover flying across the room (don't worry, the bathroom door stopped it).

It's been very sobering especially when I feel so clear in my mind to have so much searching and heartache in the eyes of those who are trying to listen to me and help me.

It's been fairly morbid as well. My symptoms could stay the same, decrease or improve. Only time (in conjuction with steroids and radiation) will tell which direction things will go. And changes could take a few weeks to settle into.

We've had and chosen to talk about advanced directives -- CPR, intubation, etc. -- if things got to that point and what our desires would be. I've put in requests for my funeral (I think they're funny "Krista-isms"that would celebrate my life and kwirks... along with the request not to serve egg salad or tuna sandwiches... that's just a preference). For me (and by the number of times my sister rolled her eyes at me or we were laughing in Kleenex), it's been a strangely comforting topic of discussion.

We've laughed, we've cried. We've remembered, we've dreamed. It's a strange vortex of beauty and suffering fused into these moments.

Let me just say that I'm not thinking right now that I'm dying. Things have definitely gotten more serious and complicated but I'm very much still here. I'm still saying "see you laters" and not "goodbyes." I'm doing (I think) as best as I can be despite the circumstances.

I've felt so very humbled by my friends and family and strangers who have chosen to pray for me. And even more amazed by those who don't pray and took time to think of me. At many points through the day when discouragement or fear would creep in I actually knew someone was praying for me and lifting me up before God. And I felt shielded and swaddled & infused with hope and peace. And then to hear back from you with how God was moving in your hearts -- it was a good day!

This next week will bring two more doses of whole brain radiation (I'll lose my hair in another week or so), an MRI to get another picture of my brain and hopefully the physical strength that they know that I can safely go home safely. I got out for a few hours on a day pass yesterday and it was great -- family time, my boy & dog playing, a home cooked meal, fresh air, the mountains, just sitting or lying on my couch or bed, my own toilet... I could go on and on. I loved escaping! Saturday was a good day.

And so we take another step forward on this journey together. I know this hasn't been an easy journey for you either so thanks for being here with me.

My husband whose name means faithful has certainly been that to me and more on this journey. I have the most amazing husband!

25 Hours

A dear friend has set up 25 hours of prayer for us starting at 2300 tonight. I am very thankful and will rest and bask in Him as you carry me to God. I promised to share some of our requests so that you can get a little glimpse of where our hearts are. Here are some of our requests.

- Xhevat: health & strength... endurance, decreased stress, coping, peace, hope, balance

- Matias: oblivion to what's going on, joy & growth through all of the changes in his life, special moments together... and that he'd learned to call me "mama" in addition to counting to ten and learning the alphabet 

- Health: for complete physical healing (of course) but also for recuperating strength & stamina to enjoy life and face what comes next

- My family here: A special covering & protection needed for caregivers as they helplessly watch and care for someone suffering. Also to be able to have the energy & balance they need to face what's in their hearts.

- My family overseas: I cannot begin to imagine how difficult it is being so far away at this time. Pray for health & strength and that they can entrust me and their lives to Christ.

- Friends, extended family, acquaintances & strangers: I'm aware that my journey is impacting others in different, special and sometimes difficult ways. I ask for grace to saturate the nudgings and questions and vulnerability to face the discomfort of the unknown. I also ask for comfort and peace and confidence as my friends struggle through some of these questions and entrust themselves to His care

- Me: continued joy & hope & peace & trust & to radiate Him.

Sunset from my room on my Fourth Night

Learning to Dance

If you know me at all, you'll know that I'm NOT a dancer. When music comes on I get very self-conscious & awkward & have stilted movements.

Over the years one of the things Xhevat and I had talked about is taking dance lessons together. And we talked about it again this past weekend.

These last few days we have had many an opportunity to dance (albeit still not very gracefully). He helps me stand and I selfishly stay in his arms an extra few seconds. And then we move together to the window, the wheelchair, bathroom or wherever we want go.

Our movements are choppy at first and we need to tell each other where to stand or hold. But we're learning and adjusting to this new dance. And I'm so grateful for my partner. 

What I Have Survived Since Feb 12, 2013

(in 147 Appointments)

IVs (successful) x 61

Bloodwork (successful) x 67

IVs or Bloodwork (unsuccessful) x 12

Biopsies x 13 (I think)

Chemo x 29

Bone strengthening infusions x 15

Injections x 9

Brain radiation x1

MRI x 1

CT x 9

Ultrasound x 3

Xray x 6

ECHO x 1

Surgery x 2

Minor surgery x 1

Days in hospital x 3

Parking Ticket x almost one

This was day one of radiation... day two will happen in 90 minutes or so.

Bring on Brain Radiation

Today is a new day. I'm thankful to be where I am and feel like I have a great medical team around me to help me.

The support, love, meals, babysitting, encouraging words, conversations, prayers, etc. have been overwhelming.

I have been admitted and am so thankful to be in a private room... yay for my "own" bathroom. I was able to speak with my oncologist and my new radiation oncologist yesterday. The plan is to start brain radiation this afternoon at 2:20. It brings me comfort knowing that we're moving forward even if logically it is incredibly scary.

My sister brought our little Monkey by the hospital this morning. It was so good to see him even if I couldn't be the one watching him terrorize the rest of the unit.

I feel incredibly blessed to have my husband by my side, my sister & Monkey closer than a text message, parents and in-laws close through the iphone & many other friends, church, neighbours, colleagues & even strangers offering help and support whether near or far.

Mostly I feel unworthy of having such an amazing God with me. I cannot nor do I want to imagine going through this without Him. I'm so thankful for the faithfulness of my Father, the understanding of suffering of Jesus and the intimacy of comfort and peace given by the Holy Spirit. Any "good" that is seen in me comes from Him.

So with my team around me, I move forward with treatment. And with the hopes and prayers of many, we ask for the miracle of healing and the strength to gracefully move through each day no matter what happens.

Thank you for journeying with us.

Together in ER

My view from upstairs

Readmitted

Last week I was a wife and mom with cancer. I was driving myself to appointments, taking care of my husband and son and very much alive and living.

Things changed this weekend. My brain can still think clearly but my speech is slurred and movements are not coordinated. Despite increasing medications, my symptoms have progressed.

Today I'm back in ER and hope to be admitted this afternoon/evening to a ward. I've seen my oncologist and have received the news that there are more metastases than originally thought. I'm waiting to be referred to a new doctor. Hopefully the plan will be to get more imaging and then get on with radiation. My symptoms are not currently explained by the CT results we have.

Ironically, the cancer in my liver seems stable and my back doesn't appear to have gotten worse.

So we wait. And I ask you to pray... still for my liver and spine but specifically for my brain.

We are shaken & broken. We know the truth but have unanswerable questions. Our hearts are aching.

Tonight will be my first night as an inpatient (except for when I was born or when I gave birth)

It's Sunday

It is Easter Sunday -- the day we get to celebrate Jesus conquering death & coming back to life.

For many years I have known and believed this but it means more to me today. My hope in life and my hope in death is because Jesus is alive. And one day I will die and live with Him forever.

That is my hope and that is what I cling to.

We don't have any more answers from yesterday's tests. The MRI was changed to a CT with contrast and happened in the later afternoon. After that I was discharged and will follow up with my oncologist & neurosurgeon when their offices open on Tuesday.

It was good to sleep in my own bed (again) and I'm happy to not have three other roommates and their families that close to me.

I may venture outside of my house these next few days but am still processing so much and will not be able to process out loud with everyone. Thank you for praying for us & supporting us. We continue to need Him in new ways each day.

I'm tired, tender, hurting, and yet I have hope. He is risen!

Enjoying a rare snuggle

(Photo by the lovely Linda)

It's a dark day today, but Sunday's coming!

Most days I can push through the pain & emotions of this journey. Today I'm not doing it. I wish I could but it just seems like too much.

I've had a bad headache for way too long. Today I've had nausea & vomiting. My back has been hurting for a while and I've been experiencing some neurological changes. And emotionally I just feel tender and afraid.

I have not found anything to be helping my physical pain and I'm pretty sure that I have allowed that pain to affect me emotionally.

Everything combined drove me to visit the ER today. Triage. Assessment. Bloodwork. CT. Wait.

You know, just another Good Friday.

Then we got the news.

My head CT has shown some abnormalities in my brain -- most likely some new breast cancer metastases.

Ugh. Xhevat and I cried. We tried to text those who needed to know immediately (but missed people in the shock). Then we were sent over to RCH and I was admitted. As I looked around the others in the four bed room, I look nothing like the other patients. It scared me. Initial nursing assessment done. I lay my head down for the first time comfortably. Then the doc assesses me. He wants more imaging that won't happen until tomorrow hopefully.

"Do I need to be here or can you give me a overnight pass? I will be back whatever time you want me to be here." And he agreed!

So we're all at home. We picked up Matias from our neighbor's who were so fantastic to watch him (they only have girls clothes in his size). Nicole, my sis, arrived after 1am and now I'm supposed to hurry and rest and go back to my inpatient bed early in the morning.

It's a dark day today, but Sunday's coming.

Not welcome sites to see for me 

They're manly pink monkeys, right?