Friday, November 18, 2016

Joy Unspeakable

We're home. Oh with such a thankful heart do I write that small but wonderful sentence. After spending two weeks in the hospital where we learned about the sudden regression of the cancer, faced many unknowns with the immediate future, had all sorts of tests and procedures, met with a variety of hospital doctors/teams and experimented with various medications and dosages, we finally came to the well-supported (and well-prayed for!) decision to receive palliative care in my parent's home.

As I shared in my last blog, given the progression of cancer within my lungs and encroaching on major organs, we have moved from treating the cancer to managing the symptoms of the cancer. We'll never forget the moment my oncologist said he believes I have less than six months. While it's startling to receive a number and move forward without medical treatment, the peace of God still powerfully reigns in my heart, mind and soul. Thank you for your ongoing prayers for this inexplicable peace. There is no doubt the multitude of prayer warriors surrounding us have been going full blast on behalf of myself, Andy, my parents, sister, brother, family and close friends. We continue to need your prayers more than ever as each of us move forward trusting God moment by moment.

With a thorough plan for pain management in action, I have been feeling better than I have in two months! After our summer of much-needed, beautiful rest and returning from the Bahamas early September, I had about two more weeks of that same summer health and activity level I'd been enjoying. But looking back, the six weeks that followed and lead to our recent two week hospital stay, I was regressing physically but trying to deny it. We kept hoping for an upswing, but my calendar items were being cancelled or switched to my house, eventually just being visits in my bedroom where I lay sick with nausea and pains I couldn't shake. Despite home care nurses coming with IV meds twice daily, things were getting worse. Needless to say, looking back it was a rough two months for myself, Andy and those closest as we felt rather helpless and discouraged when reporting things just hadn't improved.

So now that my pain and nausea symptoms are under control with medications and dosages that are just right for now, I am beyond thankful and feeling amazing with all this relief! It is incredible the palliative care I've been able to receive here in my parents home with a consistent, kind-hearted overnight nurse and a super organized, friendly morning nurse who oversees everything and coordinates with my family doctor and nurse practitioner, who also make weekly home visits. With all this close monitoring, as symptoms become worse, this team will be working together to increase dosages or adjust my medications as needed. I feel secure in the good hands of this home palliative care team, and we do always have a nearby hospice as a back-up option if needed.


Andy has really taken the role of my primary caregiver; giving and tracking medications, being extremely knowledgeable about everything to do with my pain and symptom management plan now and as it changes, picking up new prescriptions, assisting with all personal care and just taking care of me throughout the day in every way! Andy takes one day at a time in stride, keeps me calm and I just love being around him. We are so thankful he is off so we can spend all this quality time together. 

Our marriage has never been short of bucket lists, and now is no different. The scope and parameters may have changed from visiting more countries than our age (we're both on target woohoo!), physical endeavors, hosting parties and planning day trips or weekend adventures, but the excitement of a fun-filled bucket list continues! Our list is full of 30 minute outings close to home like bundled wheelchair cruises downtown, mall visits to people watch, drive thrus for special warm drinks, Andy picking up the morning paper and coffees so we can nostalgically do the crossword together like he would with his Grandma, an early evening Christmas lights drive, etc. We'll see if we can manage a matinee movie one day or even a daytime lunch out for my favourite appetizers. They're fun, simple, short and something we will look both forward to! Our very first outing since being home from the hospital was last night and it was a raging success. The wheelchair was perfect and Andy whisked me down the Burlington pier with our warm drinks from home. The goofy smiles plastered on our faces elicited many cheerful hellos and my eyes brimmed with tears I was so overjoyed by the trill of it all. Praise God for wheelchair freedom and Andy and I's shared love for adventure!

My Mom continues as a primary caregiver too; setting me up each morning with breakfast, bringing me meals and drinks, overseeing the incredible meal schedule friends have so tangibly been caring for our family through, taking care of our daily laundry needs, keeping the house and our (their beautiful main floor master bedroom) room with en suite clean, taking full care of me when Andy's out for errands, etc. Mom selflessly serves Andy and I every day. She also saw me through some really terrible days in those two months of downhill health this past fall. I am so blessed to be her daughter, and all the more so in this challenging season.

My Dad and sister, Caroline, live at home here too, and of course are always helping out when they're home. It's really a blessing to all be under the same roof again, like we were during my post-surgery recovery times last year for a total of seven months. Ben, my brother, and his wife, Caroline, visit us often here. I just love my family and consider it such a blessing to get to see them so often in this set-up. I've always known my family was truly special and a rare gift from God, but I'm so humbled by it during this difficult season and am not sure where I'd be without them.

I'm still very weak and have relatively low energy, but can enjoy spurts for half hour visits with family and friends. I love to see people and have really appreciated the flexibility and respect visitors have shown these short visit timelines. Thank you, dearest family and friends! I look forward to these continuing and am thankful Andy keeps my pace of booking visits to a reasonable flow, so we can still enjoy each other amidst nurse visits and get rest throughout the day. Tonight, I'm very excited for a small group to come for an hour to fill our home with worship music and prayer. We've enjoyed a few of these over the past year and a bit. I am always so blessed by God's presence and the encouragement the shared worship brings. Pray for us tonight if you'd like!

So yes, I'm home under palliative care. That reality is real, hard and a burden of such uncertainty for us all to bear, especially my close family and friends. We all need your prayers more than ever for those hard personal moments where it really hits and in the uncomfortable conversations with members of our health team when discussing end of life things. It's a weird way to live for all of us, but the only way forward is trusting God and embracing life in each moment we're given together.

As I've completely surrendered and am choosing to fully trust God in this season, I've been embraced by the warmth of God's unfailing love for me. The sunrises here are beautiful over the water, and one morning my heart was just singing this verse, "Let the morning bring me word of Your unfailing love, for I have put my trust in you." Psalm 143:8. And then with this mornings orange/pink glowing sunrise, my heart was singing this verse, "Because Your love is better than life, my lips will glorify You. I will praise You as long as I live, and in Your name I will lift up my hands." Psalm 63:3-4. 

God's love for me right now is so palpable. It's beautiful. Out of this unfailing, relentless, overwhelming love is where a wellspring of inexplicable peace reigns and unspeakable joy bubbles. I am "filled with an inexpressible and glorious joy..." 1 Peter 1:8. In God's perfect love-filled presence, I am filled with life, hope, peace and joy. Praise God for these unspeakable gifts!
"You have made known to me the path of life;
You fill me with joy in Your presence,
with eternal pleasures at Your right hand."
- Psalm 16:11

26 comments:

  1. Julia, beautiful reflection on those around you. Being able to seek the positive has always been a struggle for me, and reading your blog makes me see how simple and refreshing it is to reach for those things. We are glad to hear you are at peace and able to find comfort in GOD. We will always be praying :)
    Love Nick and Kayla

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  2. dear Julia, as I read your blog it brings back memories and the same emotions when Matt was sick. As I sit here with tears running down my face, I can only hope that my girls would have the same faith and love for the Lord as you and Matt have had. Thank you for being so inspiring and uplifting throughout your courageous battle. Your family must be so proud.
    All our Love, Nicola and Jeff Fryday

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  3. We are going through some of this in our family Julia and your faith strenght and courage is such an inspiration to us.

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  4. Julia,
    Thank you for sharing your journey so publicly! Your strength, faith, love and wisdom are not only inspirational but aspirational as well!

    Love and prayers to you and your close ones,
    Peter

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  5. I have never met you in person, Julia, but I have followed your blog for the past few months and find myself thinking of you as a precious friend I just haven't met yet. Thank you for so transparently inviting us into your life in this season. It is a priceless gift to us all. You are helping us store up faith, hope and love in our hearts...and this gift from you is the most excellent way to help us all love, serve and live for our Saviour well. Thank you. I am in awe of how God is carrying you, Andy, your family and dear friends through this time. I am in awe that your heart sings the way it does. You have led me in worship tonight. Thank you. Love, Lorilee MacLean

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  6. Precious Julia and Andy,
    Many hearts break with yours as you share the Dr's news..... and yet your authenticity, your love and your faith are so genuine that it will take an eternity to plumb the depths of how the Lord is impacting others through your experience. God is not the author of cancer but He sure does not waste it. He is not surprised by it either. May you continue to know joy and the peace which passes all understanding as our Saviour who knows what it means to suffer, wraps you snugly in His nail pierced hands. With much love and respect, Brian and Heather Whitley

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  7. I'm believing for you to overcome. Joshua and Caleb were in the minority when they believed they could overcome the giants in their land but they saw God's unlimited power. I read your blog and believe you are seeing God, all His love that He is marinating you in and I'm reminded that faith works by love (Gal 5:6). Speak to your mountain Julia (Mark 11:23). I believe He is waiting for you to start. He has more good works, planned before the foundation of the world, for you to do yet.

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  8. Praying for you and your family julia.God Bless.
    Andrew

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  9. God bless your joy! And may He give you more! As I've been praying for you, romans 4 is very real. "Against all hope, Abraham, in hope, believed." Im putting your name in there! Against all hope, Julia, in hope, believed!

    Praying for your body to be completely restored, Julia!

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  10. Julia, I'm glad you are home.
    You have such a positive attitude that pervades your posts and writing. As Nick Dion said in an earlier comment, your writing is always a beautiful reflection on those around you. All my best goes to you and your family.

    You've got another lanky blond kid here praying for you.
    - Everett

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  11. Thank you for your courageous and honest updates. You are an amazing woman of faith whom I wish I had had the opportunity to meet. Please know that I pray for you often and always think of you when I hear Hillary Scott's sing 'Thy Will Be Done' on the radio. May God's peace, love and comfort surround you, Andy and your family through these tough and uncertain days. Still believing in God for a miracle....your sister in Christ Andrea

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  12. Thank you Julia, for the incredible lessons and inspiration we gather from reading your words of courage, joy, resilience and praise. So glad that you are feeling better and able to enjoy some of the small things that you love. Praying, ( personally and our small group) for your comfort and strength for all who love you so dearly.

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  13. Dear Andy and Julia,
    Just want you to know that we are praying for you and your families, and that you are prayed for regularly in the assembly prayer meetings as well as at the recent Bible conference here in Montreal. Praying for you this morning reminded me of Daniel's three friends, Shadrach, Meshach and Abednego, who said "Our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliver us...". AND HE DID! And He is no less powerful today! And He will deliver you! To HIM be all the glory!
    With deepest love in HIM,
    Robert and Sigrid

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  14. Dear Julia, we have never met but I have been following your posts through some common friends over the last year and I wanted to tell you that you have touched me so many times! Thanks for being real and so eloquent throughout this journey. You are so beautiful! You have challenged me so many times to be closer to God, you are a true inspiration and you have been so encouraging to me. I continue to pray for you and your family in these circumstances. Your friend in Jesus, Carine

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  15. Praying for your whole circle of loved ones- which is a lot of people. Praising God for your testimony and faith under the hardest things in life on this earth. Know your faith has touched so many and will continue to as no one that know you will forget your struggle and your commitment to Christ!

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  16. Julia and Andy,
    I've just come across your blog. While I, like many other's heart breaks for both Andy and you.m it's is so full of hope, grace and inspiration as you go through the roughest time with such a steadfast spirit.
    I will keep your family and you both in my prayers, thank you for being such a rockstar.

    ��

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  17. Hi Julia ! I am a student of the PSW program and I discovered your blog while investigating the Virtual Palliative care site during one of our reading assignments. I am a mother of 5 grown children and also my husband is a Pastor. I cannot find adequate enough words to describe how brave, insightful and beautiful you seem to me. Thank you for sharing your journey in such an inspirational and gracious way. I see God has great plans for you and has already enabled you in so many ways to touch many people and share the glory of what a life walking with Him is really like. May God continue to bless you and your loving family with the joy and peace that fills all of your hearts and your home this day.

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  18. Witnessing your journey has changed me, Julia. Thank you. <3

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  19. Hi Julia. I am friends with Karen Scott and I have been reading your blogs for a number of months. Your faith and evident reliance on God is so special. Thank you for sharing your journey with us.

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  20. Julia
    Many thanks for writing this blog.i have sent you a fb message, check your other inbox :)

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  21. Hi Mrs. Bayer,
    This is Katie Brewer from West Oak.
    I don't know any otherway to get a hold of you.
    I sent you a email to your school email. Read it if you can or somehow give me another way to talk to you.

    ~Katie

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  22. Dear Julia, I want to echo what so many have said beautifully in the comments above. We haven't crossed paths, but I agree with the many others that genuinely say how much I think of you as a friend I have not yet met! I've only been introduced to your story and blog a few months ago from a close friend of mine and then realized you looked familiar as I was roommates with Amy Macleod 10yrs ago at Summit and she had pictures of your summer at camp together that she had shared with me so long ago! Thank you so much Julia for being a beautiful light, shedding so much wisdom on the tough things, and living out true faith in our amazing God we call saviour. I find myself often in my day drawing true encouragement from you and your steadfast love for God. A simple thank you doesn't seem to suffice. Praying for you and your family!
    Always, Lisa

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  23. Dear Julia, we haven't met but a friend showed me your blog and I have prayed for you and Andy many times these last few months. Please know that I will continue to uphold you both, and your families before the throne of our great and good God. Thank you for such inspiring faith and for relentlessly testifying to the faithfulness and love of the Lord. Ps 68:19 'Praise be to the Lord, to God our Savior, who daily bears our burdens.' With much love in Christ, Angela

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  24. Julia, I'm rereading this blog post - having run into your mom at NoFrills just last week and hearing her speak lovingly of the ways your courage and faith are shaping those around you...and having just come home from a weekend grieving and celebrating the life of a dear uncle called Home. Your words were a healing balm today like they were when I first read them shortly after you posted them. As the veil between earth and heaven thins so powerfully in the way you describe the presence and peace of God you feel, may it continue to be so every moment of every day. I will continue to pray for you and your family. In this special Advent season too, that there would be constant assurance of the HOPE ushered in by our Immanuel...God with us, God with you. - Jacquie DeRaaf (Trinity CS)

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  25. Hi Mrs. Bayer! I hope you're doing well. Alia says hi and misses you very much! We are always thinking about you and praying for you and your family. You're such a beautiful person and a wonderful teacher to my sister. Please get well soon. Merry Christmas!! XOXO

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  26. I don't know any otherway to get a hold of you.
    I sent you a email to your school email. Read it if you can or somehow give me another way to talk to you.

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