An Act of Defiance

Three years ago I committed an act of rebellion way beyond anything I had done in my teens.

I didn’t do it alone: I recruited my family in this ridiculously defiant act.

I was diagnosed with lung cancer in December 2013. At that time, there were two treatment options for my particular kind of lung cancer: IV chemo and a new targeted therapy (pills) called Crizotinib. I underwent IV chemotherapy and then I took the brand new targeted therapy, but one and a half years after my diagnosis, I had run out of options. In May 2015, the cancer was growing and there were no more approved treatments.

Thankfully, my oncologist did his research and learned there was a clinical trial that I might qualify for. This clinical trial was for another new targeted therapy called Ceritinib. I underwent lots of testing to find out if I would be allowed to join.

My friends prayed as I went through the process. We had no idea if I would qualify, nor which arm of the trial would be the best one for me. I was approved and randomly chosen for the group that we now know is now best practice for this drug. All over the world now, people take Ceritinib with a low calorie, low fat breakfast, exactly as I did throughout that clinical trial.

I kept taking Ceritinib as long as it worked: almost two years! The side effects were difficult but bearable. That clinical trial extended my life – not just for those two years, but it also carried me through long enough for new treatment options to be available. Now I’m on a third targeted therapy, and it has been working well for a year and a half. We give thanks!

But three years ago, I had just started this clinical trial and I had all kinds of side effects. They tend to be worse the first few weeks of a new treatment, and I was also dealing with side effects from recently stopping the previous treatment. It was a very difficult season, I was in excruciating pain, and we had no idea if the clinical trial would work.

So in the midst of all the uncertainty and pain and grief, I decided to take a drastic step.

It had to do with an apple tree. I’m a bit of a gardener (not so much in recent years). For years, I thought about planting an apple tree but never did because it takes a few years to bear fruit, and I preferred plants that would give more immediate results. I did not want to wait for an apple tree to mature enough to bear fruit.

Three years ago, I chose to incite rebellion. I chose defiance.

Shortly after I started that clinical trial, my birthday was approaching. For my birthday I told my family the only present I wanted was for them to give me an apple tree and plant it in our back yard. A special tree, with branches of different kinds of apple trees grafted on so that we could have a variety of apples to enjoy. A tree of hope.

Hope is an act of defiance.

I started a rebellion and provoked defiant hope.

And it paid off: as I celebrate my birthday three years later, that tree is fruiting in a spectacular manner!

Three years later, more treatments are approved and available, and many more are in the pipeline for my kind of lung cancer and for other kinds too.

Three years later, there are baskets full of hope that were empty before.

There’s still a long way to go, though. I’m grateful that I’m here and I have a voice to speak up for lung cancer patients and all cancer patients.

This kind of defiant hope compels me as I seek to improve outcomes for lung cancer patients. I have so much to learn! I want to strategically invest my limited energy! Lung cancer has been neglected for too many years, and I’m looking for ways to change this.

It takes hope to plant a seed. It seems ridiculous that a small dead-looking seed will come to anything, but we know it can. We’ve seen it time and again: we eat food every day.

I’m planting my seed! I hope my small efforts will make a big difference for many of us.

Hope gathers us. Hope unites us. Hope holds us.

Hope is an act of defiance. Come join the rebellion!

Unexpected Gifts

I’m glad to hear that a number of you have tested your home for radon after reading my last blog post. Good news!

I must confess I’ve had a rough month, with a touch of the flu, then a cold which has dragged on. I still sound awful – coughing horribly – but I’m feeling much better and thankful / hoping to be kicking this cold to the curb!

But enough about that! I want to tell you a wonderful thing that happened several weeks ago. A complete stranger came to my house and gave me a quilt!

This “stranger” volunteers with Victoria’s Quilts Canada, delivering handmade quilts to people with cancer. A woman from church very kindly and thoughtfully asked them to make a quilt for me. She let me know it would be coming, so this was not completely unexpected!

What did surprise me, though, was that I broke down and cried when I saw the quilt!

When I learned that a quilt had been requested for me, I went online to learn about Victoria’s Quilts – you can click the link above if you’re interested. They have a lovely story and a strong volunteer base who seek to “bring physical comfort to those dealing with cancer, as well as spiritual comfort in knowing that they are not alone in their struggle.” They currently distribute about 600 quilts per month, with a lovely little card.

I got to chatting with the woman who delivered my quilt, and it turns out that when I was a toddler, she lived across the street from my family. We don’t remember each other at all, but what a small world! I asked if I could take a picture of her with the quilt, but she said no – it’s not about her, it’s about the quilt. Before I had any idea a quilt had been requested for me, before I had even heard of Victoria’s Quilts, people were thinking of me, caring for me, and working on a quilt just for me.

I have a confession to make. I feel small and ungrateful, but shortly before my quilt arrived, I wondered if I would like it, and prayed a quick prayer that I would like it, that something about it would be special for me. (Like it wasn’t enough that so many people put so much kindness and care into the whole process…)

You may know that I love being in or near water. If you’ve seen the art in my home, almost every picture is of water. I love the beach!

When I caught my first glimpse of my quilt, I started to cry because it’s the beach! When I look at it, I see a beautiful gift made especially for me! I am so grateful! I was surprised by how deeply significant this generous gift was to me.

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I have so much to be thankful for, including thoughtful and generous friends and strangers, my husband and kids who have done so much extra around the house these past few weeks (my 17yo is cooking dinner as I write this!), special times with family, and Easter – a celebration of the most deeply significant, loving, generous gift ever!

Whether or not you are celebrating Easter this year, may you and yours be filled with joy and gratitude! And may you know that there are people cheering for you, even if you can’t always hear them.

 

Good News and Good Gifts

Here’s a bit of good news that made me cheer yesterday morning:

My regular clinical trial protocol has changed! So, instead of going in to the hospital two days in a row every three weeks, I’ll now have all my appointments on the same day – yay! It will be one long day, but only one day and I’m pretty sure it will be less tiring overall!

To celebrate, I slept in this morning! My 8:30 am appointment was cancelled because I did all my tests and meetings yesterday! I feel tired today, but not as tired as I typically do on the second appointment day!

Yesterday at the hospital, I rejoiced again to receive comments about how thick my file is and how many weeks I’ve been on this trial. I’m very thankful that these meds continue to work for me! I’m grateful that I get to keep taking them, and hopeful that the good work they are doing will continue for a very long time!

In other exciting news, my kids have been away at camp (a great opportunity for which we are deeply grateful!), and they’re coming home soon! I wrote a poem this year which I will have posted below. (Sorry about the formatting: not exactly what I wanted, but it’ll do!)

I hope you will enjoy the rest of the Summer (or Winter, for those in the Southern Hemisphere), and give thanks for the gifts of each day! Our doorbell just rang, announcing the good gift of a dear friend visiting and presenting me with a gorgeous shirt she just made for me! I’m feeling rather bowled over by this generous gift! I am grateful for so many gifts, including your ongoing prayers and encouragement! Thank you!

Heart Pressed

They bump out the door,

Duffle bags bulging with sleeping bags and swimsuits,

Enough for fourteen fun packed days

The door bangs behind them,

Its vacuum pulling my heart along with them, 

Pressed up against the glass,

Aching for their presence

Yearning for their laughter

Echoing around these now empty rooms

And they’re off!

Bundled into the car

Bright smiles, cheerful waves and calls of, “I love you!” “xoxoxoxo!”

Last year, she said, she blew me kisses all the way down our street, down the next one and the one after that, and even along the highway …

Our love is a bungie cord

It stretches and stretches and

Will not break

My heart squeezes out through the door and sneaks into the car with them,

Travelling that 400km journey, tucked away like the messages I hide in their bags,

Like my note she keeps safe under her pillow at camp

And I remain, heart pressed against the glass,

Aching for them to deeply know the One who will never leave nor forsake them,

Yearning for them to encounter Him in bigger and truer ways,

Trusting that as they grow, He is always more than enough.

Heart eagerly pressed against the glass,

Excited about the people they will meet, skills they will learn, songs they will sing, stories they will savour, beauty they will behold …

And bundle up to bring back home to me

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A sample of our summer adventures:

(Diefenbunker, Nature Museum, History Museum)

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My firstborn, serving his delicious homemade ice cream!

Thick Files

Lately quite a few medical folk are commenting how thick my file is. My first reaction is sadness: I’ve had so many appointments and tests that the paperwork is ridiculous. My second reaction is gratitude. I wish I’d never needed a cancer file, but now that I’ve got one I’m glad it keeps growing! While I wish we could close it down and file it away deep in the archives, the reality is that I’m still living – with cancer – but living!

Chart Thick File April 26, 2016

Part of my file: my oncology nurse leaves the rest in the office since it’s too heavy to carry!

Yesterday marks the one year anniversary since I started this clinical trial, and I’m thankful that the clinical trial nurses have run out of pages for my pharmacology file and had to make more copies to fill in my chart. I am currently in cycle 18 and my latest scans are still good. Praise God!

I am thankful for these pills I take every morning.

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I’m thankful that although I suffer side effects, they are manageable and the pills are effective. Many people can’t tolerate the side effects and have to discontinue this drug. I’m thankful that my numbers are good.

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blood pressure, pulse, blood oxygen%, temperature

I’m thankful that I don’t have to travel long distances for good medical care. (Some cancer patients travel hundreds of km, or even to a different continent for treatment.) I’m thankful to receive cancer medication free of charge – a benefit I receive from being on the clinical trial.

I’m thankful for Spring and the explosion of vibrantly colourful beauty! (Way too many photographs to post here!)

I’m thankful to have celebrated our 20th wedding anniversary last week, and for the friends who brought and ate yummy dessert with us.

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I’m thankful for field trips, music recitals, school bake sale fundraisers, and so many more moments that I get to share with family and friends … even ones that may seem mundane. I’m ridiculously thankful that I was able to bake four cakes for my kids’ school fundraisers this past month, and volunteer for a few different things. I keep praying for wisdom and trying to stretch myself further while asking the Lord for “daily bread”: everything I need for each day. He gives generously, pouring an abundance of grace over our lives.

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I’m speaking at the fundraiser for clinical trials next week – can’t believe it’s next week – and very grateful for the difference that generosity can make!

While I would love to be completely healed of this disease, in the meantime I am very thankful that my medical file keeps getting thicker!

Connecting

We were made for community, for connecting. The people in our community have made a huge difference for us, and not just through the challenges of the past couple of years. We all need people who love us, who are for us, who will help and support us … and to really flourish, we need to love and support others as well!

I’m no longer regularly relying on the generosity of others to help cook meals for our family. Most days I enjoy the opportunity to create something nutritious and delicious! We’ve been eating lots of soups and curries lately! We share great conversation and laughter around the table, and also in the preparation time. My 12yo especially loves to cook with me, and that is one of the great joys of my life! Anytime I get to hang out with my kids, teach them, listen to them, learn with them, laugh, read and pray with them … is a good gift!

The cold weather keeps me inside sometimes, since it can be hard to breathe, but I still get out a bit.

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9yo creating a snow sculpture with a friend 

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Night skating on our backyard rink

 

I continue to wonder what the terrain will be like on the other side of this valley. I am not the same person I used to be, and I’m trying to figure out what my strengths are now, and what I have to offer. Cancer slammed some doors shut on me, but it can’t shut them all, nor can it keep them all closed. I’m glad I’m not travelling this journey alone.

A weekly highlight is our “Women of the Word” group which has been together for six years. We study Scripture, share our lives and pray together. Not only have I learned loads as we’ve journeyed (at a snail’s pace) through Luke, Acts, Micah, 1 & 2 Thessalonians, and Galatians (as well as a number of other passages), but I’ve received more than I could imagine as our hearts have been knit together in love and trust. These women are tremendous, and I am blessed beyond words that we are part of each others’ lives. We could write a book about our experiences together, and another one about the prayers we’ve seen answered.

This past September I started a Bible study for my boys and a couple of their friends. We call it bob sos. I can’t remember exactly what that stands for, but it’s something about the Bible and ice cream sundaes. This group can be challenging: these youth do not have much experience participating in group discussions and I sometimes feel like I’m herding cats! I love it though! These youth ask amazing questions – some of the best I’ve ever heard – and their faces light up many times during each study. What a gift that I get to participate with them and my encouraging co-leader!  My 14yo said, “bob sos is really fun: we get to talk about the Bible with our friends and eat sundaes!” I guess that sums it up!

I continue to live a much more isolated life than I ever had previously. This can be hard for me, social extrovert that I am, but I don’t have the energy to spend as much time with people as I used to. I have been given more opportunities to pray for people, and to grow in learning to pray. This is a privilege, and a responsibility. It is also very encouraging to see prayer answered!

My voice continues to improve … but a long way to go still. Recently I was helping to lead singing at a local church where we know quite a few people, and many came over to tell me they are praying for me. How encouraging! I am so grateful!

Who are “your people”?  In what ways do you live interconnected lives? How intentional are you about growing deeper in community? Who are the people who encourage you, who speak truth in love and help you to grow? How are you encouraging, speaking truth in love and helping others to grow?

Have you tried connecting with God in prayer? How has it been going? Luke 11 tells us that Jesus’ followers asked him to teach them to pray. And he did. Years ago, I read “With Christ in the School of Prayer”. I’m grateful to still be a learner in that good school! Prayer is talking with God. There’s no magic formula, no special language or invitation needed. We are all welcome! Praise God!

It’s not all super-nutritious around here: above is proof of that! Some of this month’s treats are pictured, including happy hot chocolate! (Do you see the smiley face the marshmallows and spoon make in the mug?) We enjoyed crepes with yogurt and fruit for dinner tonight. Happy leap year day!

 

 

Sweet Springs

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Dear Friends,

It’s nearing the end of January and I’m noticing a pattern. When I started this blog two years ago, my goal was to post at least once per calendar month. So far so good. But lately I’m pleased to report that there isn’t much to say on the health front. Refreshingly dull, really! So dull, in fact, that my oncologist almost forgot to tell me that my latest CT scan again showed “No Evidence of Disease”!

If I reflect for a moment, I’m sure I can cobble together a few more updates for you from this month …

My physiotherapist graduated me from appointments for my shoulder. I continue to do daily exercises and see small improvements from week to week. She thinks I should be better in another four to six months.

I keep taking the daily meds, continue to go to many appointments and have regular tests as part of the clinical trial. One week out of three is pretty full of this activity, and it still really tires me out.

My energy level continues to gradually increase, as does my desire to make plans for the future and my hope to one day be able to work again.

I continue to have side effects. But here’s some exciting news: a couple of weeks ago a member of my Bible study began a comment with, “Now that you’re feeling better …”. I had to clarify that while I’m feeling somewhat better, I’m actually still suffering from a lot of nausea and other things that I then described to my Bible study group. A week later I told them I was feeling remarkably better: Significant improvements in those areas I mentioned! “It’s good to know specific things to pray for,” replied a Bible study member. Just as I suspected, they have been praying for me!  I give thanks, and it spurs on my own prayer life!

I am grateful beyond words for those who pray for me. Some of you I see regularly. Many of you I don’t even know. Thank you. You continue to make an immeasurable difference for me and our family. I’m sorry if I should have been more forthcoming about some of the difficulties I’ve faced. I don’t like to complain, but I also haven’t meant to be dishonest. It’s better for me to try to focus on the improvements, no matter how small, rather than getting bogged down in the mire of the many struggles I face daily.

Thank you for the words of encouragement that continue to buoy me. Thank you for the gifts which serve as a reminder of so much good. Thank you for the many kindnesses which have helped our family soldier on through what has been a sad and scary time.

We’re not all the way through the valley yet, but lately I’ve been reflecting and realizing that there is much value in this valley. We often yearn for those exhilarating mountain-top experiences, but rivers flow in valleys, and I’ve been privileged to drink deeply from  sweet springs. I’ve been surprised by joy and hope and love and grace and mercy in this valley … and we journey on.

May you drink deeply from the sweetest of springs,

Jill

A few steps forward, a few steps backward …

HibiscusIn spite of the good work of my physiotherapist and all the stretches and exercises I’ve been doing, my shoulder is only a bit better. My physio said it would likely take six weeks, and I’m trying to be patient and disciplined!

I’m feeling more energetic at times, and at other times completely exhausted. I can’t find any patterns (apart from the fact I tend to feel more fatigue in the afternoons & evenings), so making plans is challenging and sometimes discouraging. On the upside, my 8yo and I enjoyed a long stroll together yesterday evening, and I felt up for another walk this morning. This is encouraging!

duck watchingIMG_0272signs of fall

I’ve now got this itchy rash on my arms & legs – mostly where my skin was tanned in the summer. My oncologist doesn’t know what causes it: possibly a combination of the meds and something else. A friend suggested putting aloe vera on it to help soothe the itchiness, so I tried it and it seems to make a big difference for a few hours. That made falling asleep last night easier than it’s been in a while!

Having a sore shoulder and being itchy isn’t so bad compared with not being able to breathe well. I’m trying to keep things in perspective. 🙂

Here’s an encouraging note:pollinators at work

Every three weeks I have two days with clinical trial appointments. Blood is drawn from my arm each of those days. Left arm on Mondays, right arm on Tuesdays. The Monday blood is sent to a local lab to make sure I’m healthy enough to continue treatment. The Tuesday blood marks the beginning of the next cycle of treatment, and is sent farther away to a lab for the clinical trial data.

Last month I started thinking about the process, and wondering why I had to have blood removed two days in a row. Couldn’t the procedure be changed so that I only had to be poked once every three weeks? (I also get poked whenever I have a CT scan, but that seems unavoidable.) As I thought it through, I couldn’t see any reason that would require blood being removed two different days, except that’s the way the trial was set up. I was open to the likelihood that I was missing something, since I have no background in medicine or pharmacology.

So, at my appointment last month, I raised the question with my oncologist and clinical trial administrator. They could understand my desire to avoid being unnecessarily poked with a needle, and promised to look into it.

When I received word of my appointments booked for this week, something was different! I went in to the clinical trial unit at the hospital, and they poked me once and filled up all the vials that were needed: two for the local lab and a bunch more to be sent away for the clinical trial lab. Only one poke this week! Yay! Then I went to see my oncologist, and he told me that several hours of discussion went into this decision. I’m so thankful! … and I hope that many future clinical trial patients will benefit from my raising the issue and the people in authority investing those hours.

Sometimes we feel powerless. From what I’ve observed, cancer patients tend to feel this quite a lot. Going though tests and treatments is really hard, and even before the diagnosis much of our power is stripped from us. It’s scary and stressful and painful and unpleasant.

I’m glad I was able to think about the blood work process, and felt empowered to ask the question. I’m thankful for those who were open to considering the possibility and willing to invest hours in wrestling with this question. I’m also grateful for the generous folks in the clinical trial section who now graciously welcome me there two days in a row instead of one. (I still have to have the other tests on the second day.) I know that makes extra work for them. Everyone is so busy. There are too many cancer patients.

Earlier this week I was thinking it would be nice to bake some muffins for our family, but I was too tired. Then a friend arrived at our door with homemade muffins she had baked for us! The next day another friend came with some more! Now we have two types of delicious muffins. We are so abundantly blessed!

Last week an envelope containing two gift cards for the grocery store arrived in our mailbox! Thank you, anonymous friend!

So that’s some of my news! … and I will also add that on my walk today I ran into three people who hadn’t seen me in a while (I haven’t been out and about much in the past two years), and they all commented on how good I’m looking. At least one didn’t recognize me at first. They all love my long curly dark hair, and one even said I look twenty years younger!

I’m thankful for these things and for so much more!

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