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!

2017: Grief and Hope

We’re grieving some disappointing news we received a couple of weeks ago.

My CT scan in January showed cancer. Ugh. This means the med I was on for almost two years is no longer working effectively.

Thankfully, this is not the end of the line: many new meds are being developed, and there were a couple of options for me to consider. The best option, we think, is a new drug which is only very recently available to certain cancer patients here in Canada. Good news that I fit the criteria. Good news that the timing worked out for me. Good news that the company agreed to release it to me on compassionate grounds. Good news that we don’t have to pay for it.

Yet, in the midst of all this good news … still the grief.

Naturally we hoped I’d have a longer run on Ceritinib. I had even started hoping that “cancer” would become a thing of the past, that we would turn the page and start a new chapter which didn’t include cancer. That in future there would be chapters which didn’t include daily meds, side effects, frequent appointments and tests. Maybe even one day cancer would be beaten! That day will come, but I don’t yet see signs of its coming.

The reality is that we don’t know the whole story. We can’t see the BIG picture. We have no idea what the future holds.

Thankfully I got the tests I needed quickly. Thankfully my oncologist worked late to fill out forms requesting the new drug for me. Mercifully it came surprisingly quickly. Thankfully I’ve been taking it for a week now and things seem to be going fairly well.

In the midst of disappointment, I keep praying to have my eyes and ears open. I keep looking for reasons to give thanks. I keep trying to discipline myself to stay in the present and live each day faithfully.

It’s hard to write this update. I don’t want to have to share bad news. I know you don’t want to hear it. I was blindsided by this news, and it hit hard. Surprisingly hard.  I’m still working through the grief. I started this post a few days ago, and I don’t even want to read it over to check my spelling & grammar. So I’m not going to! (I’m such a rebel!)

In the midst of this difficult news, there is good. There is hope.

Hope is the theme I’m focussing on for 2017. I chose it toward the end of 2016, and had no idea how much I would need it! One of the ways I am focussing on “Hope” is by regularly reading passages from the Bible which speak to this topic, and spending time reflecting and praying about them.

I recently read 1 Kings 19, which tells about the time the prophet Elijah was exhausted and fearful since his life was in danger, and he met with the LORD God. The LORD asked him twice, “What are you doing here, Elijah?” It’s a beautiful encounter in which the powerful God whispers to Elijah. Elijah learns that the story is bigger than what he perceives, and that the LORD has a good plan which includes Elijah. It reminded me that the Living God knows my name and all about my situation. Here is a prayer I wrote in in response:

Lord, thank you that we can come to you with the whole story, as we know it. You invite us to speak, to tell it to you. You listen and care for us. You are powerful & show your power … and you are gentle & show your gentleness.

You are more powerful than our enemies. You know our name. You know our need. You tenderly care for us. You give us a role to play in your Great story. You gently open our eyes and ears to know that the story as we know it is not actually the whole story. Thank you.

(If you’re interested in reading this passage, you can find it here: http://bible.oremus.org. Search 1 Kings 19)

Cancer is not the whole story. Leaving the clinical trial and switching from Ceritinib to Alectinib right now is not necessarily all bad. There may be good in it that I can’t perceive. Certainly the side effects so far seem much easier to tolerate, and for that I am thankful!

I’m praying for courage to boldly step into God’s Great story.

Prayers, warm thoughts, and words of encouragement are always appreciated.

Here are some glimpses of love, light and goodness from the past couple of weeks:

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The hibiscus plant is blooming again (and again)!

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I managed to root jasmine and geranium last Fall, and they’re starting to bloom!

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My first lemons are looking luscious!

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Homemade heart-shaped biscuits with our broccoli soup last night!

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I set foot on the world’s longest skating rink (wearing a cozy hat made by the sister of one of my favourite clinical trial nurses)!

 

In Ontario, cancer medications given in hospital (like IV chemotherapy) are provided free of charge, however cancer drugs that we take at home (like effective new pills) are often paid for by the patient. Sometimes they cost thousands of dollars per month. Many cancer patients face significant financial fragility, and should not have to pay for their treatment medication. The Canadian Cancer Society is making it easy to speak out against this unfair situation. If you are an Ontario resident, please consider taking action! Click here to contact your MPP about this important issue!

 

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!

From Hill to Hill

When friends near and far are asking how I’m doing and why I haven’t updated the blog, I know it’s time! 🙂 The short summary is: I’m quite well, praise God! Life has been full in many good ways the past couple of months, and computer challenges made it difficult to update the blog. We are so thankful for the generous friend who gave us a new  computer which I have sufficiently figured out and am thrilled to be able to use! (Apparently you can teach an “old dog” new tricks! haha!)

Time and time again I am blown away by the generosity of people! There are so many stories I could tell from the past couple of months, and I hope to at some point. Let me simply say we feel very blessed on many fronts!

The numbers are good!

The numbers are good!

Here’s the health summary:

The clinical trial drug seems to be working very well! I have better days and worse days, but overall I feel better than I have in many months. The side effects are mostly manageable and overall seem to continue to decrease. I am always looking for the patterns, wondering if I change my eating habits will the GI effects diminish, for example, … but so far there is no discernible consistency. One day I’ll be mostly fine, and the next I’ll be napping all afternoon / evening. Fatigue hits hard and startles me, like running into a wall. But I’m learning to adjust my expectations and try to do things when I can.

One day in the summer I wanted to walk through a long and hilly, sandy path to the lake. I’d heard the waves were gorgeous and I really wanted to see them and play in them. My 8yo was with me and I said, How about we try walking to the top of the next hill and see what we can see. I really didn’t think I could make it all the way there, but wanted to try a little. Each time we got to the top of a hill I asked her if we could try for the next one. We kept reaching for these little goals then re-evaluating, and amazingly we made it all the way through from hill to hill to the lake. The colours were beautiful, and the scenery spectacular! I wished I could have brought my camera! We played in the waves which were huge for a lake and reminiscent of the ocean. My daughter was thrilled that I could play and climb with her! I didn’t stay long, but thoroughly enjoyed the opportunity, then turned around and headed back. I felt exhilarated and exhausted, but mostly spent the walk back praising God and thanking Him for giving me the strength and courage to make the trek, and for the joy of the whole experience.

This past week was tiring, with all the usual routine tests and appointments that happen every 3 weeks, plus the CT scan which I have every 6 weeks. I have to take meds before the CT scan to help prevent allergic reactions, and that means setting my alarm to take them once or twice during the night. I am grateful for the meds and the care, and the good people with whom I interact, but having things on three days in a row and missing out on sleep takes so much more energy than one might expect. I was very tired going into this week, but yesterday was feeling amazingly well. Sometimes these gifts of energy and ability come as beautiful surprises!

There have been so many beautiful gifts and surprises this summer, and I would love to tell you about them all … but today I have groceries to buy! The summary is that we’ve had many joyous visits with friends, the kids all seem to be settling into their new school rhythms well so far, and we are feeling very loved and blessed. I hope to fill you in on more details in the coming weeks.

Thank you for your love, prayers and support. We cannot find words to tell you how grateful we are!

Beautiful blooms!

Beautiful blooms!

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Setting up for the usual tests

Setting up for the usual tests

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Clinical Trial Update

On Friday May 8th, I learned that I get to eat breakfast for the foreseeable future! I’m part of a clinical trial which is examining the effects of food on absorption of a new drug which is under examination here, and not yet available by prescription.

Afternoon testing supplies

Some of the testing supplies

I started Monday the 11th, with a long (8:00am to 5:00pm) day at the hospital. Some excellent nurses poked a needle into me which remained there for the course of the day so that at regularly scheduled intervals throughout the day they could collect blood samples to analyse how this new drug was doing in my bloodstream.  Several times they also attached about ten electrodes to my skin to record how my heart was doing. There were a few other tests which also occurred in a blur of a busy day. These were all a routine part of the clinical trial.

One poke lasts the whole day!

One poke lasts the whole day!

Electrodes for the ECG

Electrode for the ECG

Vomit bucket unused!

Vomit bucket unused! 🙂

I didn’t feel like a guinea pig, though. I felt very well cared for by skilled (and happy) professionals who made a long and tiring day as enjoyable as it could possibly be. Well, they didn’t give me chocolate, but one nurse who was going on break near the end of the day even went so far as to ask if she could bring me something.

Over the day I learned a bit about them and their families and observed some of what their job was like. It’s a small unit with a lot going on. Patient care comes first, and they always seem willing to answer questions or stop and talk. At times during the day they were very busy: one patient forgot to come in for her morning appointment and had to be squeezed into the crowded afternoon schedule. Another patient had to be whisked away for some additional tests, with many repeated explanations given to the patient as well as three accompanying family members. Blood samples were spun out in the centrifuge, chairs and beds were rearranged in intricate patterns, and scheduling at times seemed like an advanced logic puzzle.

Monday morning this tray was filled with empty tubes. Late in the afternoon, only one set of blood tests left!

Monday morning this tray was filled with empty tubes. Late in the afternoon, the timer counts down to the last set of blood tests for the day!

My morning was basically non-stop tests, with little downtime in between. Two nurses were needed at times because some tests had to be performed simultaneously. The afternoon was a bit quieter, with time for short walks around the hospital between tests. I enjoyed visits with my husband and another friend, and did a little reading.

I went back for a shorter visit with fewer tests the next day, and again this week. I will be spending time (mostly short visits) with these nurses weekly over the coming months. I could think of worse things!

So far, this drug seems to be working! I am still coughing, but much less often – and it doesn’t feel like I may explode whenever I cough. I’m tired, but less so than I was in recent weeks. I’m sometimes short of breath, but no more than before and perhaps even less. I am thankful!

I’m also thankful that the side effects seem better than with the previous drug. It’s hard to say at this point, but I understand that usually side effects decrease after the first week or two and this is what I’m hoping for! So far, there has been a fair bit of nausea but no vomiting. My tummy is upset a lot of the time, but this may fade. No visual disturbances, so I may try driving at night again at some point.

So far, so good!

Last time I asked for prayer for my side which was extremely sore. I rejoice to report that the pain is completely gone and has been for some time. Very thankful!

We continue to be grateful beyond words for the countless ways so many people show us love and kindness. The other night as we sat down to a meal which an amazing woman from church had prepared and delivered to us, my 8yo daughter leaned onto my arm, looked up at me and said with the most beautifully expressive voice, “We are so blessed!”

Yes, we are!

We are so grateful for the thoughtful generosity of so many!

We are so grateful for the thoughtful generosity of so many!

Gerberas are the happiest flowers!

Gerberas are the happiest flowers!

Spring is bursting out in our garden!

Spring is bursting out in our garden!

Our garden changes too quickly in Spring!

Our garden changes too quickly in Spring!

Another glimpse of Spring in our garden!

Another glimpse of Spring in our garden!

Check out the texture on this tulip in a public garden!

Check out the texture on this tulip in a public garden!

Wood duck

Wood duck: the other day we noticed a new neighbour!

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Group hug! Goodbye to good friends!

Group hug! Goodbye to good friends who came for a visit!

Quick update: tests and changes

Hi folks – it feels like a very long time since I last posted, and there is news to update you with but not much time or energy. Here is a rushed post as I’m waiting between parts of a test. Apologies: I can be wordy when I’m tired and in a hurry!

There is a new drug that will hopefully work better than the medication that I was on since last July. (I’ve now stopped taking the old one, and am coughing more and feeling joint pain as a result.) I am privileged to be part of a clinical trial which is scheduled to start Monday. This week is therefore filled with various required tests to give us a baseline to compare results. I’m taking most of them in stride, but there will be another CT scan and bone scan, and I feel a slight bit of stress about them.

My last CT scan went well: I don’t remember if I gave you an update after it, but I had a lovely time with a friend whose husband had the same test scheduled directly after mine. It was such a gift to be able to spend time with her and to be so deeply encouraged by her! I am so grateful!

In case you didn’t hear the story, they had changed the protocol for people who’d had allergic reactions to the dye they inject. So I’d been told to simply show up for the test and remind them I’d had a previous reaction, then they would give me something just before injecting me. Once I arrived, however, they said that due to new protocol, they could not administer the test and would have to send me home. (I was supposed to have taken a bunch of meds on a whole schedule starting the day before.) To make a long story short, they had mercy on me and let me go along with the old protocol (just as I’d been mistakenly told), gave me the meds and the test went fine! I’m a bit nervous about tomorrow’s CT, but hopeful that all will be well!

This afternoon’s bone scan should be fine too. I went into the hospital early this morning to be injected with radioactive material, and I’m scheduled to go back in an hour for the test. They strap you onto a bed and a machine spins around, taking amazing pictures! The only tricky bit is that the machine gets really close to the face and it can be a bit much for someone who can be claustrophobic! Last time I prayed a lot and felt very calm. I tried to keep my eyes closed and “listen” to my imaginary ipod. As long as I didn’t think too much about how close that thing was to my nose, I was fine. Every time I felt panic even hint that it was going to rise up, I prayed and felt peace. I am so thankful!

Today I’m not worried, but I am very tired! I usually do at most one thing per day and these tests make for long (for me) days. Also I’ve had to get up earlier than usual and that tends to knock me out!

So, what’s this clinical test about, you may be wondering …

One of the new drugs that has been developed for my particular kind of lung cancer is undergoing nutritional testing to see how the body absorbs it. (At least, this is how I understand things!) I am privileged to be part of this testing which will help future cancer patients get the best treatment possible. So I will be assigned to one of three groups on Friday, which will indicate what my dose is and whether I take it on an empty stomach or with a meal. (If I get to have it with a meal, they give us guidelines for what we can eat.)

I’ll have to fill in a simple daily journal (see photo), and take a bunch of tests (including spending a few days at the hospital having blood removed every hour or two), but this new drug is supposed to be really good, with fewer side effects than the previous one.IMG_5154

I was a bit worried about the days of blood tests, so I asked about the procedure. They should only have to poke me once, then leave a thing in me to which they can attach the tubes when they need more blood. Sounds easy!

Yesterday I had a bunch of blood taken and I only felt one little poke. Hardly hurt at all. This morning the technician who made me radioactive was so good that it did not hurt one bit when she poked me. Honestly, it hurt more on the way out than it did on the way in! I thanked both women for the amazing job they did. They are skilled … and kind! I am blessed to be served by such professionals!

I have been thinking a lot lately and have many stories that I could tell you, but my energy is so limited. I hope to write more frequently, and plan to once I have a little more energy.

I’m thankful for time with friends, little walks, signs of Spring, and so much beauty in this world.

Lastly, let me say that I am so grateful for the energy to truly be present with my kids, to make things and do things with / for them, and encourage them to have friends over, and teach them things, and tell them (as well as showing them) I love them. This is what really matters, and I am so thankful for all these opportunities!

Seize the day, friends, seize the day!

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So Much Beauty – Even in November

IMG_2732November has never been my favourite month. Around here most of the leaves have fallen, days are shorter, and the world tends to look dull and grey. There is beauty, though, if one has eyes to see: so much beauty, even in November.

This has been a strange month, with my computer away for repairs, then a bad cold which turned into pneumonia (from which I’m still recovering), but just as I was about to go to bed I realized that I hadn’t posted all month … so here are a quick couple of thoughts before it’s December …

This morning I saw a woman at church who looked familiar, but my fuzzy brain couldn’t place her. I thought I might know where I knew her from, but perhaps she didn’t hear what I’d suggested or maybe I’d misspoken … We looked at each other and chatted, trying to figure it out together until finally she remembered with certainty, and so did I. She looked different to me, with that hat she was wearing and being out of context and all, but it wasn’t until this evening that I realized I look very different now myself.

My children are a couple of years older, much bigger, and more mature (most of the time!). My hair is much darker now, with small silver streaks, and quite curly (!) in recent months. I tend to move more slowly, stiffly, and navigate stairs with difficulty. I lean or slouch more when I sit, and standing up after sitting for a while takes determination! Today was a tough day: I was very tired and my joints hurt. For a few moments I didn’t think I’d be able to put my jacket on after church because my shoulders were so stiff and sore. I have not regained much of the muscle mass I had lost, in spite of my hard work: so often it seems like one step forward, two steps back. My body is still quite puffy from steroids and chemo, and when I looked in the mirror I realized it’d be easy to not recognize me, especially if it had been more than a year.

Inwardly I’ve changed too … living more in the present rather than the future, learning to look more intently and appreciatively, and greatly increasing the proportion of prayer time spent in thanksgiving. I was always so active and busy multi-tasking. Now I’m slow and learning to be more prayerful. I’m trying to listen more for what to pray about, and I think I’m growing in this – praise God. These inward changes are more important to me than the outward ones, and I am so grateful for the beauty of these good gifts.

I say with the apostle Paul (2 Corinthians 4), “Though my outer person is decaying, my inner person is being renewed day by day.” I know this is by the grace and power of God, and I give thanks!

How are you changing – both outwardly and inwardly? Do you have eyes to see beauty even in the midst of difficult times? What could you give thanks for right now?

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