Back to This Reality

It was a wonderfully difficult thirteen days! Travelling with a toddler was hard, many conversations were troubling & my heart is weary. Our trip was also filled with so many special moments of mutual encouragement, tender acts of love done for my family, and so many opportunities to share my hope in Jesus.

Between jet lag, steroids, unpacking, an emotional trip & a toddler, I'm tired.

Fortunately, we came home to grandparents who are here for us to do anything (including toddler over night jet lag care)! And we came home to a house that had been cleaned top to bottom for us! We are so thankful for both of these.

Today I get back into the medical routine of things... bloodwork & a CT. And next week we meet with my oncologist. Then there's physio, the dentist, my bone strengthening infusion, radiation oncologist... and I haven't even added friends, family time or treatment options to my calendar!

Maybe it's the lack of sleep but I'm feeling very overwhelmed right now. I know it's to be expected. I know I just need to just take a deep breath and relax (much easier said than done). And I know that I'm processing a lot right now.

I'm craving stability & needing rest for my body, soul & mind. Thank you for praying me through this time.

Feeling like I'm in an elevator and I'm the 42nd person.

Home & Almost in Bed

After a long day of travel including early arrivals, engine valve problems, delays & lost and found baggage, we've arrived home two hours later than expected tired. Xhevat and Matias haven't been feeling the greatest. I have had maybe two or three hours of sleep in the last 45 hours or so. We are thankful to be able to sleep in our own beds tonight. And we're all hoping to get some good rest. Thank you for praying through our trip with us.

Coming home from the airport: Matias' first time in a car seat in a couple of weeks (yup... I did what I said that I didn't ever want to do... I held my child on my lap in a vehicle... and I held on tight!)

Last Day in Prishtina

Today is our last full day here in Prishtina. We have seen almost all of our family and have made some wonderful memories!

Watching Matias getting to know the Krasniqi's has certainly been Xhevat's & my highlight!

Getting to live out life's difficulties and uncertainties with hope, peace and my faith in front of my family has been my desire for this trip.

And through this trip we've continued to laugh and cry!

So I'm go into today with a tired, heavy but celebratory heart. I love my family so deeply and from this trip I've learned more about their hearts' needs and how I can be a better sister-in-law, daughter-in-law from, and aunt afar. 

We'll say most of our goodbyes tonight (get out the Kleenex!) and leave for the airport at some silly hour like 4am. Thank you for praying for us both on our last day and as we travel. Our boy is just in the middle getting of his second cold here (and nothing would quiet him this morning except for a stroll outside at 5:30am). If all goes as planned, we'll arrive back at home late Tuesday afternoon. See you soon other side of the world!

Tragedy: My blanket is getting washed! I can see it but I can't get to it. It just keeps going around and around!

Our morning stroll.

Family

It has been wonderfully special being here. The weather started out cooler and rainy and today is 27 and sunny! We were greeted at the airport by Xhevat's dad and brother-in-law. And I believe there were almost thirty family members at the apartment that night.

Some of the memories I will cherish include:

- Matias standing in the center of the living room encircled by his family our first evening. He would clap his hands and make sure everyone in the room was clapping with him. He had total control of the room!

- Matias has been taken out to the playground or for a walk by so many people each day! He has thoroughly enjoyed getting out and running all day every day.

- Celebrating my sister-in-law's upcoming marriage. Since it was suggested to come now, we won't be able to attend in June. So we celebrated now! Food, music, dancing, (with Matias in the middle of everything clapping) cake! We had a great time.

- The call to prayer was ringing out from at least three mosques one morning when we were outside. Matias hadn't heard this before and he raised his hand like his grandpa Wagenhoffer taught him and sung along with the call to prayer. I would have recorded it but we weren't alone. I couldn't help but crack a smile.

- The macchiatos... if you haven't experienced them here then I just can't begin to explain how truly delicious they are (Starbucks can't compare).

- Xhevat's mom's cooking & serving. She just has such a special heart of humility, service & hospitality.

- Watching Xhevat eat his mom's food. He just enjoys it so much and I know that it's nourishing his heart even more than his body.

- Growing cheeks on my face and a tummy... my steroids have taken over and I've lost some muscle mass... but I now have chipmunk cheeks! I'm really looking forward to getting off this medicine when I get home.

- Serving our family. We've had so many people at the Krasniqi apartment that we wanted to serve them some meals and give Xhevat's mom a break from cooking for 20+ people daily. One day we made homemade Macaroni & Cheese and another day we made pizza. It's been a blessing to us to be able to do this for our family... and they even enjoyed our "American food."

- Conversations. Oh so good... but also very difficult. It is hard in this culture to be in agreement with a diagnosis that (unless God intervenes) will end in death or to even talk about things surrounding death. If you talk about it, it might happen so avoid talking about it... only think positive thoughts. Many conversations have been centered around how serious my situation is but that my hope and my faith is in Jesus. Our time on earth is temporary... we are not made for this broken world.

- Sleep & sickness: Jet lag with a toddler is hard. And just when he slept through the night, he caught a new bug. We all are needing some sleep.

- The three of us are all in one room and so when Matias wakes up, he crawls in bed with us and is generally most snuggly at these point. I'll take any snuggles I can get!

Today we'll see some friends from another town where we lived. Then the plan is church on Sunday. And more family time. We'll say most of our goodbyes on Monday night and then our flight leaves early Tuesday morning.

The days have gone by so quickly. Sleep & rest have been difficult. We've each been fighting off new germs. Conversations have been good but difficult. We are being treated like royalty. God is good.

Our first night here

Serving many Mac N Cheese for their First Time!

Xhevat & Some of his Sisters

Breakfast At Our Apartment (ten of us "foreigners" stayed together)

The more kids... the more action! How fun watching cousins play together!

My sister-in-law, nephew & me

I Don't Feel Anything

There are certain portions of my legs and feet (about half of each) that I cannot feel -- they're completely numb. I also have difficulty sensing where my legs and feet are in relation to the rest of my body.

This is just one of the effects of where my brain metastases are located.

It's weird because I don't know if I've been standing or sitting in a position too long. I can't feel if my shoes are on correctly or if my socks have a seam that's bothering me. Stepping on uneven surfaces & toys are even worse things as I can't feel the toy/surface and correcting myself is even harder.

And then there's my strength. Sometimes I just can't get my foot high enough to step into a higher vehicle or go up higher stairs... so I either have to kneel and crawl to my seat or I have to lift my leg with my hand to get my foot up and then propel myself foreward hoping that my trailing leg will follow appropriately (that would be for getting into the vehicle... stairs are much less dramatic).

Now don't get me wrong... I'm not an invalid. Just yesterday we were walking in this beautiful park in Prishtina and I think in total we did about 3km... 1 uphill and 2 downhill. And me & my stroller (used as a walker for my stability) had a great time! I haven't walked that far in a couple of months and it felt great!

Years ago I vividly remember reading a book about pain as the the gift no one wants. It shared the stories of a Dr. Paul Brand who worked with leprosy patients in India. Dr. Brand's work revealed that painlessness is the root cause of the damage leprosy patients incur. Here's your fun fact of the day... leprosy is not a disease of the skin; it's actually a disease of the nervous system. A bacteria attacks the nervous system & destroys one's ability to feel. And because you don't feel, you can be injured and not know it (picking up a hot pan off the stove with nothing but your bare your hands, the rock in your shoe that you can't feel, more in a third world situation... rats or mice eating fingers, toes, ears, nose, etc while you're asleep). Interestingly enough, a simple course of antibiotics is the cure to stop the progression of leprosy.

"Pain is not something that most of us would count as a blessing. However, Dr. Paul Brand’s work with leprosy patients in India and the United States convinced him that pain truly is one of God’s great gifts to us. In this account of his fifty-year career as a healer, Dr. Brand probes the mystery of pain and reveals its importance. As an indicator that lets us know something is wrong, pain has a value that becomes clearest in its absence. Indeed, pain is a gift that none of us want and yet none of us can do without."

(Zondervan, 1994 and 1997)

http://www.philipyancey.com/the-gift-of-pain

I'm reminded these days how very brutally painful life can be. Some of this pain is a very good thing -- we stop instantaneously and correct our ways (use the dry towel to take the hot pan out of the oven). Sometimes it's just a constant reminder of what's going on -- it hurts but it's manageable and it can be worked through (my eight week & ongoing headache, muscle cramps, bone pain, liver fullness).

And then there's the most dangerous kind, the lack of pain & sensation -- by your choice or circumstances, you cannot feel pain (physically: nerve damage from diabetes or brain metastases causing lack of sensation; emotionally: your heart has been hurt too deeply or often emotionally; spiritually: you feel that God has betrayed you & is dead to you).

Consider what's causing you the most pain in your life right now. Maybe this pain can actually be a good thing. We all need pain in our lives to change our path and stop us from doing things that could hurt us even more.

Or perhaps you're like me or the leper and you need to consider what should be causing you the most pain. Facing the pain of painlessness is daunting. However if you continue to walk down this path without change, it will with certainty lead to more destruction.

"As an indicator that lets us know something is wrong, pain has a value that becomes clearest in its absence."

http://www.zondervan.com/the-gift-of-pain.html

http://www.amazon.com/gp/aw/d/0310221447/ref=redir_mdp_mobile 

Playing in the Park

My first Macchiato here... Starbucks, you can't even begin to compare!

Home to Kosova

What a whirlwind it has been! Our flights over weren't really that eventful. Matias slept very little but was generally content. For this we were grateful! We got bumped up to business class on our last flight (which meant we sat in front of the curtain and received the exact same service -- there is no business class on the plane we were on... Just that curtain. :-)

Xhevat's dad & brother-in-law met us at the airport and the other almost 30 people met us at the Krasniqi apartment. Matias did so well and within minutes was getting everybody to clap when he clapped. His aunts and uncles love to take him out of the apartment to the playground. Each time they come back, they let me know I have a very happy & active child.

These last few days we've had a tough time getting over jet lag. Saturday Xhevat and I woke up at 2am and Matias at 3. That was rough. We've been playing hard as we can and taking it easy as we need it. We need more sleep than we're getting.

Our bellies are larger already. We've been served such wonderful food. My mother-in-law (like my mom) has a very special gift of hospitality. Just getting lots of loving through home cooked cooking.

Physically I've had some new side effects that have been a little worrisome. They're not getting worse but we'd appreciate your ongoing prayers specifically for my brain, liver & spine.

We've spent lots of time so far with family. It is uncommon to have less than 20 people at my in-law's at any given moment. So there is always action and Matias is just soaking it all in!

Spending lots of time with family has led to some really good yet difficult conversations. It's been good and I'm so thankful that we are all here together.

Our original plan had been to come in June for my sister-in-law's wedding. As plans changed, we wanted to celebrate them a little early. So last night 27 of us got together to celebrate and my sister-in-law and I cooked! Nothing crazy... Macaroni & Cheese (2.7kg of cheese!), sausage, and a salad. And then came the music and dancing and snacks and cake! Just being together was wonderful... and by the amount they ate, I think they even enjoyed it too!

At the airport meeting his grandpa for the first time

Family

Cousins

Getting dinner ready

Dinner is served!

Krista & some of my isters

Xhevat and some of his sisters

On Our Way

Just a few minor glitches today involving banking, exchanges, packing, a bag forgotten at home (the parents returned home through rush hour traffic & got it to us on time)! You know, just a typical day.

But we're on the plane and boarding has completed! We're on our way!

And We Even Got Bulkhead Seats!

The Gift of A Letter From My Sister

Let it be known that my sister made me cry this time! She sent me the following letter on Mother's Day that she had written for my son. I have a pretty amazing sister whom I love dearly. The following are her words.

Dear Matias,

Today is May 11th, 2014 and it is Mother’s Day. It’s been a tough day for many of us. I think of my mom, your grandma, and the difficult year she has had. I think of your mom too. If your mom’s doctor is right (but I still pray that he isn’t), today may be her last Mother’s Day.  I can’t tell you how painful it is to think about that.

I also think of you. Right now, you’re a happy-go-lucky one-year-old, oblivious to the effects of cancer. Like a regular toddler, you’re more concerned with getting food when you want it, trying to climb the highchair and enjoying time at the park. It’s a relief that you don’t feel the pain like we do.

Someday you might find this day difficult though. You might wonder about your mom and wish you had known her better.  So let me tell you a few things.

First of all, your mom wanted you so very much. Along with your dad, they prayed for you for many years before you were born. News of your birth was so wonderful! Grandma, Alexa and I drove down to Langley while your mom was in labour and we were privileged to see your mom and dad that very first night, holding you in their loving arms.

As you probably know, your mom was diagnosed with cancer when you were only 5 ½ months old. It was devastating. The pain was so intense and seeing a young mother receive such a prognosis was heartbreaking.  

We have all cried many, many times, but your mother has shown such amazing strength and courage. She has always been determined (or as I would say, stubborn) and she has used that determination to walk this difficult journey. Yet more importantly that that, she has held firm in her faith in God. She knows that she is His and that He has full control. She hasn’t pretended that the pain doesn’t exist but she hasn’t wallowed in it either. She struggles with fear, like any human would, but she has chosen over and over to trust in God’s plan, whatever that may be.  

And yet more courageously, she has chosen to expose her life, her hurts, her desires, her wishes, to all of us. She could have hidden in her own world, but instead she has gone out, welcomed people in, shared and loved.  

She has been a glowing reflection of God’s love.  She always wanted to be a missionary – and she has been, now more than ever.  

She has had the rare ability and strength to take a horrible, devastating situation and let God’s glory shine right through it. Not just shedding light on a few, but on many, worldwide.

And so, Matias, if you don’t get the opportunity to know your mom, please know that she was someone who faced fear and chose with God’s help to live for Him regardless of the circumstances.  Matias, you should be proud. And I pray that the strength that your mother has found will shine through your life as well.

 

Lots of love,

-Auntie Nicole

 

 

My Sister & Me

 

I Put My Boy to Bed Last Night

I put my boy to bed last night.

That just may be another chore for moms & dads every night but last night I cherished every moment. You see, for a few weeks now I haven't changed a diaper or chosen out clothes for my boy or cuddled him to sleep or taken him out for a walk. And this might sound like a glorious vacation to you... but it's been very difficult to not to have the strength or energy or patience to be a mom to my one and only son.

And so last night I wanted some extra special selfish moments with my precious little boy for Mother's Day.

While my husband changed his diaper and carried him up the stairs, I was the one brushing his teeth and putting him into his big boy pyjamas. I washed his face & put his lotion on. I gave him his soother and blanket. And the two of us crawled into his bed.

Together we read some books -- one was about everything from creation to Heaven (he kept on turning to a different page when I read about Heaven). And we talked about letters and numbers and colours. I tried to get him to say "I love you" but all that came out were the letters "i" and "u." We laughed and giggled and he'd share his soother with me. He's not a cuddly kind of kid but in his squirrellyness, he'd roll his little body into mine and would just stay for long enough that it made my heart smile. He then told me a great big story in his gibberish. He laughed, I cried. It was such a string of tender moments.

He touched my face & my freckles and played with the skin on my neck. And every once in a while his big brown eyes would just gaze into my eyes and stare at me intently. It's as if his soul was telling me something words couldn't describe. There was such tenderness, love, peace, and a quiet spirit in his eyes. He didn't want to snuggle but some part of his body had to be touching mine... whether it was his hand on my cheek or his foot braced on my neck or his body draped over my calves.

He couldn't quite let go to fall asleep with me beside him; he was just too enamoured. And so I left my little boy's room and he cried that his mama left. A couple minutes later, he was off to dreamland.

This could have very well been my last mother's day... but let me tell you that these moments were so incredibly special. I have a son who is so loved and precious and has made me feel significant & loved. I couldn't ask for more. What a preciously difficult day this Mother's Day it has been!

I put my boy to bed last night.

My little boy

Too precious for words

Dear Mom

I love you.

Thank you first and foremost for dedicating me to God as a baby. That single commitment has shaped my life for eternity. Thank you for nurturing me to know how to love and be loved. Thank you for raising me in a safe home. Thank you for allowing me to make mistakes and for teaching me to ask for forgiveness. Thank you for cheering me on when I wanted to give up.

We share so many qualities... both good and bad. It's wonderfully annoying! Our love for hospitality. Our stubbornness... aka determination when we use it for good. Our ability to find humour & joy in really tough circumstances. Our ability to celebrate. Our ability to see people's unspoken hurts, needs & dreams.

Thank you for taking care of me, my husband and my boy with tireless love and concern. When I'm having my bad days, having you take care of me is especially comforting and needed. No mom should have to watch their daughter suffer and it breaks my heart for what you're going through. I wish I could fix the pain that we're going through.

Through it all, you've never left my side. You've stood up for and beside me, encouraged & corrected me, loved & disciplined me and just are an amazing mom.

I love you Mom! Thanks for being my mom.

Your Youngest Daughter

My Mom & Me

Coming Home

Third time

It's that time again. My scalp is getting tingly & tight. It's itchy. My hair feels like it's been in a pony tail for too long. Rubbing/scratching/massaging my head brings comfort and pain. I don't know how long my follicles will hold onto the shafts of hair.

This is my third time losing my hair in the last 14 months. 

I miss my long curls... and I'm going to miss my short curls.

Without sounding horribly vain, I really like my hair.

And I'm going to lose it again shortly. I haven't decided if I'll shave it again or if it's short enough that it won't be a problem. I tried to wet it down in the bathroom while I was out for lunch today and ended up with a hand full of my own curls.

This is simply a side effect of my whole brain radiation and a part of my treatment. Although losing my hair makes me look and feel "sicker," I know it will grow back. However it might take longer to grow back after whole brain radiation. And right now I'm sad to be losing my hair

This is just another day on my journey & I'm giving myself the time and space to grieve this loss.

I'm not all doom & gloom & Eeyore. This week I've had some wonderful chats with friends, my very first pedicure, pictures & notes from my colleagues in the PICU, a date night with my husband, booked tickets to visit Kosova (we're going next week!), family playtime in the backyard. It's been a full week so far. My emotions are all over the place and I'd really like it if I could be nice to sleep through the night... but it's 3am now and sleep is not with me.

For now, I'm needing to learn to rest/surrender/relax into the pain & discomfort of the situation.

My very first pedicure ever! Special memories with a dear friend.

Love (and socks) sent by my friends from work... happy nurses' week!

Options...

This morning Xhevat and I met with my oncologist. The plan was to discuss how I'm doing right now and options for future treatment.

We've been given options but they aren't as plentiful or beneficial as we'd like. My doctor's recommendation is currently to let the radiation do it's thing on my brain and recover from it. The side effects of whole brain radiation can take weeks to develop and recovery can take up to six weeks and beyond. After that we can make decisions about more chemotherapy options.

It's been a tough morning. Because of the number & placement of my brain metastases, my case is much more rare (a handful of cases in BC in a year). I might regain my physical strength. I might not. I could have seizures. My driver's license is essentially revoked. Things can change quickly. And I'm being encouraged to enjoy life to the fullest as I have my strength & energy.

It's another hard day in this household.

So after asking how important it is to travel and at my doc's encouragement to travel as soon as possible, we'd like to go and see our family in Kosova. This could happen as early as next week. Healthcare in Kosova (or while traveling) could be difficult in an emergency situation. We are aware of this.

So we continue to try to live each day fully. Tonight is a date night for Xhevat & me. Babysitters. Dinner. A movie. Mom & dad (who have taken over caring for Matias & me since my sister was here) will be getting a date night as well. My caregivers need rest, prayer, love and support.

We're trying to have a little bit of what might appear to be normal in an anything but normal situation.

What can you do? I truly don't know other than asking you to pray. We feel helpless about my situation but still trust Him. We are trying to live & enjoy life while intentionally making special memories... a soccer game, dinner out, a weekend getaway. I'm doing fine right now physically but it is scary to have experienced and know that things can change very quickly. It's serious. My hope is not changing.

Last year we were given (I believe) Potato & Kale Soup in this container... I don't know who owns this container... please let me know if it's yours.

Home

It has been so good to be home these last few days. Fresh air (even the manure smells of Cloverdale). Non-plasticized pillows & bed. No vital signs. I take pills when I want/need them. Wifi. Home-cooked delicious meals. Family. Extended family. Friends. Putting my boy to bed at night.

It has been good.

We've even ventured out to pick up my new snazzy blue walker and have done outings to Costco, the park with my boy, my husband's soccer game, and the ocean. I tire more easily but want to live each day fully as I have strength & energy.

"Krista, will you promise me to not think and write a post about yourself in a negative way? I want to read about you just in the positive way."

I received this request a few days ago and could not promise anything other than being myself and sharing my story. Being myself involves knowing & accepting truth: God has not changed, I am His, I have cancer, and I have hope. But I also want to be real. This sucks! I think about death because I'm alive. We're all going to die people! If I can't share about my hope in death, what right do I have to talk about my hope while living?

Joy & sorrow are not exclusive or at opposite ends of the spectrum of my emotions right now. They live fused together in me. Hearing my boy say "mama" is such a wonderful sound and at the same time my heart just aches at the thought of him calling my name and I'm not there.

I cannot make the promise to hide my negative thoughts. Death will eventually come for all of us and so I will continue to live in the hope and strength and power of the One Who Made Me. I will promise, however, to share my story as honestly and openly as I'm able.

Since my cancer has gone to my brain (and because of how many spots I have and where they are located), I have been given a poorer prognosis. To me these are simply facts & my current reality. God is still in control, He numbers my days and I will live in His hope. And I'm still asking for a miracle.

My medical treatment since diagnosis has always been palliative (with the goal of extending a good quality of life for us... not to cure my cancer). My treatment is still palliative and I still have a number of options before me. As my diagnosis has become more complex and rare, my oncologist has presented my case before other oncologists to receive the best options for treatment. We will be hearing these options and making decisions on Monday morning.

There may be a wide range of thoughts as to how I'm doing. I'm not in hospice. We're still heading down the road of treatment and symptom suppression. My brain swelling has decreased and I'm able to speak with minimal slurring. Some words are still difficult to enunciate but I can handle that. I have fatigue, muscle weakness, and loss of sensation to parts of my leg & foot. I can move around the house very decently... when we're out I hold onto a stroller or walker or person as needed. I'll lose my hair next week from the brain radiation. I have a voracious appetite (and some chubbier cheeks) thanks to my steroids. These are just some of the physical things going on.

Emotionally & spiritually, it's been hard. While our trust in God hasn't changed, we have unanswerable questions and are getting through each day. We have hope. We are reeling. With a grateful heart, I think we're doing surprisingly well. We do, however, need your continued prayers to bring us to God when we just can't to get to Him. Thank you for doing this for us.

It is good to be home.

Looking at Boats at the Pier