Friday 28 June 2013

Twenty

Originally the plan was 2 to 6 cycles of chemo (eight to twenty-four weekly doses). We had no clue if I'd respond to chemo or if I could handle the side effects. My CTs and bloodwork have shown improvement. And anyone who has seen me can vouch that I'm doing quite decently and not experiencing horrible side effects.

This morning I had yet another doctor's appointment & some bloodwork and then chemo in the afternoon. These are two plans that are currently in play.

Plan A: a CT in 4 weeks and see how things are looking. Assuming that I'm continuing to respond and tolerating the side effects, my doctor is planning on adding another 8 weeks of chemo and then switching over to oral meds.

Plan B: a CT in 4 weeks and if I have plateaud in my response to the chemo or am not tolerating the side effects, I'll switch to oral meds.

So twenty down and either another four or twelve to go!

I have mixed emotions. While I'm thrilled at the idea of the chemo working (and lessening the cancer in my body), I'm needing to gear my brain up to the idea of another twelve weeks of chemo. I love the idea of living longer. I also like the idea of not getting multiple pokes every week or planning something that doesn't involve the hospital on Fridays or actually having a functional immune system or having to get up earlier to style my own ringlets. It seems trite to be complaining about these things when I'm fighting for my life... but welcome to the dichotomy of emotions of my life.

[I'd still like to ask you to pray for my liver. Of all of the bloodwork done today only one number (one of my liver enzymes) was slightly out of normal range -- I consider that pretty impressive considering all of the cancer in my body right now. I'm still praying for miracle and trying to trust whatever happens.]

Ending on a funny note: when my chemo nurse talked about the hot weather ahead this weekend and suggested installing a ceiling fan, I told her I'd just take my hat/hair off and the thirty degree weather would turn into a balmy twenty-two degrees for me... there are definitely certain benefits to not having hair!


What I Have Survived Since Feb 12
(in 54 Appointments)

IVs (successful) x 36
IVs (unsuccessful) x 5
Bloodwork x 38
Biopsies x 12 (I think)

Chemo x 20
Bone strengthening infusion x 5

MRI x 1
CT x 3
Ultrasound x1
Xray x 3

Parking Ticket x almost one

A bruise on the back of my wrist from one of my four pokes this week.

Wednesday 26 June 2013

Cards, A Camera & Kleenex

While my past few days away were refreshingly beautiful, my heart faced some very difficult thoughts. Rest & preparing for the future were on the agenda.

Rest included uninterrupted sleep, extravagant food, some pool/sauna/spa time, and just being alone.

Preparing for the future wasn't quite as enjoyable. At the beginning of this all, a dear friend shared some ways that I could prepare things for if/when I die. When I was ready, she encouraged me to check out a website called Record Me Now. The concept is to record videos and answer questions for children that you might not get to share personally... a way to share my story with Matias if he doesn't get to know his mommy well.

Part of my time away was spent in front of a camera answering some of these questions. Remembering things about my life growing up, about our family and about him... and sharing some things that are important for him to know for his future as he grows up.

I also went with a bunch of note cards. I wanted to write notes for my family for significant events. And again, especially for Matias. I want him to have something from his momma on his birthdays, when he graduates, on his first date, when he gets his driver's license, etc. I would love nothing more than to be able to give each and every card to him personally but if I'm not able to be there, I want to be prepared.

My journey on these days away was heart wrenching. In the beauty of my surroundings, I was mourning the loss of me and how it might impact others. I've got a long way to go before I finish my videos and notes and it feels good to have started.

Cards, a camera & Kleenex

The view from my room

Thursday 20 June 2013

Get Away

Have you ever felt like you just needed to get away from it all? I've definitely been feeling that lately. Between appointments and every day life, my mind hasn't felt like it has had the opportunity to fully work through the way life has changed. And with (hopefully at least) another five weeks of chemo, I really feel like I need to go to some of those places.

So this weekend I'm getting away. Matias and I will be going to Kelowna. While he stays with my sister, I'm going to retreat for a couple nights. Just me, my cancer, my Bible, a book, some cards & a camera.

I'm wanting to go to some of those hard places with my heart centered on the hope that I have.

Would you be praying for me please?
- Safety while traveling & for a contented kid
- Being away from my husband and my boy (I've never spent a night away from my boy)
- To go to some dark places and be able to process some of my thoughts and feelings (the rational and irrational ones)
- To be able to get some rest and rejuvenation
- To come back and be in a better frame of mind so that I can be a better Krista, wife, mother, daughter, sister & friend

I plan to come back just in time for my next week's busyness of my bone strengthening infusion, doctor's appointment, bloodwork & chemo.

I also wanted to thank you for praying for my liver this past week. Please continue to do so (I long for the day when my doctor has to tell me that there is no evidence of disease in my liver).  The one liver enzyme that jumped up to triple the normal limit in a really short period of time is now back within normal limits (and is the lowest it's been since starting chemo). And the rest of my bloodwork was exactly what we were expecting and I was able to get my full dose of chemo today. 

This is all good and is a great way to enter into this weekend's journey. Thank you for walking with me, my faith, and my cancer especially through these next few days.



Tuesday 18 June 2013

To the Fathers in My Life

To Aga (my father-in-law):
You're a determined man who has sacrificed much for your wife and children. You have been a hard worker and protector for your family. You've provided a safe home where all of your kids knew they were loved. Thank you for welcoming me into your family.

To Dad:
You've given me so much (beyond the bunions, big nose, & voice)! I am so blessed to be raised by a man who loves God. You taught me how to work hard and let me learn alongside you. You showed me how I should be loved by my husband. Thanks for being my dad!

To My Husband:
Happy First Father's Day! You are a man of courage who has faced many difficult circumstances. I feel incredibly blessed that our son has a father like you. Just like your father, you are determined and generous. You have already given so much to our son (and it's only been ten months so far). I look forward to watching you lead him and us in God. Thank you for being such a loving and dedicated father!

Happy (belated) Father's Day!

Wednesday 12 June 2013

This Week & My Liver

It's been a good week in this household. Without any appointments (except physio), it's been great to enjoy some family time. I've had the privilege of watching my little boy become enthralled with playing with pillows and finding joy in sucking on the handles of drawers (more than a little disgusting to me). When he  wakes, he also routinely will have three soothers (one in his mouth and one in each hand), and he has successfully put two soothers in his mouth at the same time! I have also become his jungle gym; he loves to crawl and climb and is everywhere at once. And his new favorite toy is being surprised by whatever it I hide inside of an empty Kleenex box.

The best part of every day is the afternoon. Xhevat comes home and we eat while Matias has his nap. After that the three of us, along with JR, go out for a walk or play on the floor of the living room. There is no schedule and things don't need to get done. We just need to enjoy each other and be. 

And today is Friday (well, it's a continuation of my Friday). It's Saturday at about 1:30 AM and I'm awake thanks to my steroids and my sleeping pills haven't quite kicked in yet. I received my chemo earlier today... an 80% dose because my neutrophils were on the lower side. Also one of my liver enzymes increased fairly significantly this week. If the increase is a one time thing, there's no need to be concerned.

I'm looking forward to seeing some family this weekend & getting away for a few days next week (I'll tell you more about this later).

If you're like me and believe in the power of the One Who Hears Our Prayers, I'd like us all to be praying for my liver. More specifically, please pray for the following:
- all of my liver enzymes to be heading back in the proper direction and specifically for the one that was elevated this week. Please pray against upward trends as this could mean my cancer isn't responding to the chemo.
- I thank God for decreasing the cancer in my liver & pray that it will continue to decrease for many weeks, months and years to come.
- Medically, my cancer isn't expected to be able to be gotten rid of completely from my liver. I'd like you to join me in asking God for a miracle that my liver would be completely healed and cancer free (it can't hurt asking... the worst He could say is no).
- If not healed, then to have my cancer healed from some areas of my liver so there might be an option to get rid of the cancerous areas (right now although the sizes of the cancerous lesions are getting smaller, the cancer is widely spread throughout my entire liver with too many lesions to count).
- If not to certain areas, then that the lesions would decrease in size or stay the same size for many months and even years... and that there would be a time when my liver lesions are countable.
- I could go on and on with my many "If not this, then..." requests. No matter what journey is chosen for me, pray that my faith would grow and that my life would reflect my Strength, my Hope, my Peace, my Comforter & my Saviour.

The liver is the big dark organ on the top left and center of the picture.

Sunday 9 June 2013

A Walk in the Park

After seeing an invitation on Facebook, last night I ventured down to a local park to find a friend I hadn't seen for a number of years. My friend, having been through a cancer journey of her own, was participating in a Relay For Life event at our local park. I went down to support her and returned with jumbled emotions.

As I approached the park, I could feel the excitement of the hundreds of people as they walked and jogged around the track. In the center there were tents and chairs set up by the teams. A band was playing energizing music from center stage. The atmosphere was upbeat and lively.

But I was nervous and emotional. The events of the last few months has changed me from an observer of telethons and fundraisers to a person who is a grateful and hungry recipient of knowledge and research funded by these organizations. I have been taken from the periphery and am now in the center of the storm. My emotions continued to swirl.

I happened to arrive at the time in the program where a candle was lit inside each of the hundreds of bags. Each bag had the name of a person on it... someone who was being remembered because their life had been impacted by cancer -- grandparents, fathers, mothers, sons, daughters, friends. A bagpiper led the group around the track passing each and every illuminated name.

While being overwhelmed (in a good way), last night was also overwhelming in a difficult way. My thoughts turned to my grandmother who I never got to know because of cancer. My thoughts also went to the future and to those who may not get to know me.

This is the tension that I'm living in. I live somewhere between the future and the present. Sometimes it's hard to be fully here now. I spent the majority of Saturday having a blast with my husband and son... intentionally making memories. A drive, a short hike to a waterfall, a picnic lunch, another walk with bannock & coffee on the shore of a lake. Lots of pictures were taken and more importantly memories were made with my family. Beautiful memories.

Life is too short to live in any other time than the present.


Touched & blessed by my family honoring me at another Relay For Life.


Tuesday 4 June 2013

Sign Me Up...

Sign me up for two more months of chemo!

While this might not be happy news for most people, this is great news for me! I had my doctor's appointment today and the cancer in my liver continues to decrease! There are still too many lesions on my liver to count but they're getting smaller. And my doctor is saying yes to things he'd said no to when I was first diagnosed. So bring on two more months of chemo and we'll go from there.

It's so difficult to be on the roller coaster of getting treatment but not knowing if it's working. And then you have the scans and you wait to hear the results. And then you get the results and a plan is formulated and you wait another month or two before you have any idea if things are working.

And in the middle of all of the hurrying up to wait... the prayers of many are lifting me up... and I'm alive and living!

Our family had a very relaxed weekend. The cold is going through our family so we had some forced family down time. No agenda. Taking care of each other. Tears and laughter. And lots of fluids.

Four months (16 doses) of chemo in me... and two more months of chemo to come! Praise the Lord!

What I Have Survived Since Feb 12
(in 44 Appointments)

IVs (successful) x 27
IVs (unsuccessful) x 5
Bloodwork x 27
Biopsies x 12 (I think)

Chemo x 16
Bone strengthening infusion x 4

MRI x 1
CT x 3
Ultrasound x1
Xray x 3

Parking Ticket x almost one


Me & My Boy 
(in our new socks that we wore to get today's good news)

Saturday 1 June 2013

Role Reversal

For many years now, I've been the caregiver. I've taken care of family and friends when they were hurting or in need. Some people call it compassion, empathy, or a mother's heart. No matter what it is called, it is a gift and I cherish it.

Nursing -- and specifically pediatric nursing -- has been a natural fit for this caregiving nature. I love to come alongside families in their moments of crisis and walk with them. Sometimes I have been able to do this for a few minutes or hours and other times I have journeyed with families for weeks and months and years. Sometimes I was helping their child to breathe and giving medications necessary for life. Other times I was simply a listening ear or comforting arms.

When I worked overseas my practical nursing skills were used very indirectly... but many of my caregiving skills were used throughout every day.  Most people I saw had been through some kind of crisis of their own -- medical trauma, war, poverty, loneliness, despair, childlessness, joblessness, broken relationships, etc. I heard heart aches, celebrated victories, and shared in the every day experiences of their lives. It helped me to value praying and interceding for people in need. Whether or not there was something I could do to help the situation, I could pray that God would not only meet the physical needs but the emotional and spiritual ones as well.

Now I'm the person in need. I've lost control -- something that I struggle with greatly -- and I cannot get through the day without others. Physically I'm fine (other than the fact that there's lots of cancer in me and I tire more easily). Emotionally, I can be all over the place. One totally harmless comment can put me into tears because it means something entirely different to me. Spiritually, I'm being upheld by many people... some I know well, some know just my face and story, and some I will never meet. I'm over the initial shock. I'm wanting to move on and grow in God so that He can continue to use me.

Now I'm also the patient. I'm learning how to ask questions and advocate for myself. I'm learning how to listen to my body and heart and their needs. I'm learning to accept when large or small mistakes and near misses happen and encourage a process of change so that they don't happen to others. I'm learning to be unapologetic and kind when asking for things. I'm learning that most people don't understand what it means to be 34 and have a palliative condition. I'm learning to live now -- with all of it's highs and lows -- and with no regrets. I'm learning and relearning what's important to me -- the gifts God has given me -- and use them for His glory.

I'd much rather be the caregiver than the one being cared for but I'm learning so much in this new role and being blessed my many caregivers in my life. For this I am incredibly thankful.

This picture is from a number of years ago. I hope it brings a smile to your heart.