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