In the News

A few appointments ago, my oncologist asked if I’d be willing to speak at a fundraiser for clinical trials. I agreed to consider it, and a few conversations later this was on the news:

 

I’m grateful to Patricia Boal, Bryan the camera operator, and the CTV news team for doing such a great job telling the story.

The breakfast is next month. I’m feeling a bit nervous, but I said yes for a number of good reasons and I’m glad I’m doing it. I hope my story will encourage and bring hope to others. I also hope it helps raise funds which will make a difference for many.

I dream of the day IV chemotherapy will be obsolete and cancer will be cured by a few weeks of daily pills with insignificant side effects. I hope it happens in my lifetime!

“How are you doing?”

“How are you doing?” is a question that can be tricky to answer! Obviously the answer depends on a lot of things, including the context: the grocery store clerk will get a very different answer than my oncologist will! Close friends will likely get a much deeper answer than I would post publicly, but sometimes I just don’t feel like talking about it – even with the best of friends. I’m so thankful for all those who understand and encourage, who pray for us (if they’re the praying sort of people) and support us in many ways.

A lot of people are asking how I’m doing on these new meds. So far, this one seems better than the last one (which was much better than the IV chemo). I’m still puffy, but not ballooned-up like before! I’m hardly coughing, and can sing a bit most days! I love to sing, so this is both exciting and bittersweet because I can’t sing anywhere near the way I could before. The joint pain (from going off the previous drug) is diminishing. Nausea slows me down, but doesn’t usually stop me! My digestive track seems to be getting used to the meds, and tummy upsets are decreasing. I continue to experience painful intermittent stomach cramps from around 3:00pm until bedtime. It may be my imagination, but I think it’s better than it was a couple of weeks ago.

One thing that’s hard to figure out is the fatigue. I’ve always loved to push myself to the limits: to do as much as I can without overdoing it, endeavour to reach that line without crossing it! Now I know the line is in a completely different place than it used to be, and I feel grief about my significantly diminished capacity, but what’s tricky is that it feels like someone keeps sliding that line around with no discernible pattern! It’s impossible to know how much I can manage because it varies dramatically from day to day.

I pray and I pay attention, trying to find the sweet spot: the best rhythms of activity and rest. I wear a pedometer most days in case the measuring of my steps will help me find that balance. I know it’s not a precise science, but I often feel like it’s completely random and I have no wisdom at all about the abilities of my body.

Often I’m exhausted by dinner time, and if I can pull together the energy to cook dinner, then sometimes I need to rest before I can eat. Right now, that’s probably the hardest thing. If I get a second wind after eating, that is bliss – largely because it helps me interact better with my kids and supervise their music practices, homework and chores.

Then there are activities which energize me on some levels, but tire me on others. It’s hard to weigh out the cost-benefit ratios sometimes, but I tend to err on the “going for it” side of things!

I went for a little hike with friends, and that nourished me deeply … but if I recall correctly, the kids had “fend for yourself dinner” that night! I’m glad they’re old enough for this, and (generally) wise enough to (mostly) make nutritious choices!

Below are some pictures from my little morning hike. It’s amazing what there is to see and hear if we pause and open our eyes and ears. There is so much life, goodness and beauty to appreciate!

What about you? How are you doing? What are you thankful for? What are you grieving? Who encourages you? How are you doing with your various boundary lines? Do you have good, trusted friends with whom you can open your heart? With whom could you take appropriate steps to trust more deeply and grow closer? What nourishes you? How might you open your eyes and ears? Who will you bless today?

I pray a blessing on you, dear reader!

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Group selfie, strategically cropped for this public post! (I’m the one in the hat.) 

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Spot the owl! I love my little blue camera: it’s so easy to carry and takes great pictures, but – like all of us – it has limitations!

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Two ducklings with their mama

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Wood duck reflection

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beaver? muskrat? otter?

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“Night Heron”, is what some friendly strangers called this.

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Night Heron

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Too quick for my camera, but there’s beauty in the blurriness!

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I don’t have to go hiking to see beauty: this is my neighbour’s lovely garden:

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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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Cold Violas

We are a musical family. My husband is a song-writer and teacher. My kids are each learning at least two instruments. I dabble in a few.

I’ve dusted off my acoustic guitar, and have been practising it recently, trying to toughen up the soft calluses on my left hand in preparation for playing at church this Sunday. “You actually sound pretty good,” said one of my surprised kids. My husband is the band leader, and I tend to play whichever instrument best suits that particular occasion. I like variety, I’m flexible, and I’m not a perfectionist (at least about this!): I enjoy this kind of role. But I digress …

Lately I’ve been driving our two younger kids to their viola lessons. It’s a bit of a challenge for me because it’s a crazy choreography with tight deadlines, multiple pick-up’s and drop-off’s in several locations, and a lot of driving (which I don’t particularly enjoy) in a neighbourhood where I regularly get lost. I used to get lost even before the chemo. Now with chemo brain the challenge is multiplied.

Yesterday I was en route to take 8yo to viola, and pick up 11yo from viola so I could deliver him back to school for volleyball practice. My 8yo was telling me about her miserable experience during recess, and all of the sudden I realized we were approaching 11yo’s school rather than viola lessons. Oops! To make a long story shorter, eventually everyone got where they were meant to go, and 8yo was only two mins. late for her lesson so no big deal!

I try to have a sense of humour about little mistakes like this. Like, for example, a few weeks ago when I picked up 11yo for his viola lesson and realized I’d forgotten the violas. We rushed back home and over to the lesson and it all worked out fine in the end. I try to not be too frustrated with the brain glitches. I have come up with a variety of strategies which I employ to help overcome these annoying deficiencies. Often they work well … especially when I remember to use them!

I know to never leave my guitar out in the cold for any length of time. I asked my kids’ teacher how long I could leave their violas in the car on a cold day. She thought an hour or so should be OK. So when I went (straight from viola lessons) to watch the end of a volleyball tournament a week or two ago, I brought the instruments in with me. Yesterday, however, we just watched the last 15 mins. of my 11yo’s volleyball practice, so I left the violas in the car. Did I mention my son is pretty good at volleyball? This is his first year playing on his school’s team, and I’m amazed at how much they all have improved in only a few weeks! Yesterday my son had some amazing moves at the net. But I digress…

This morning my 8yo couldn’t find her hat and realized that she’d left it in the car. We popped open the back of the car, and I saw the viola music bag in there. Strange, I thought, why would I take the violas into the house but leave the music in the car? Then it hit me: I’d forgotten the violas in the car overnight! Eighteen hours in well-below-freezing weather! I prayed. I tried not to cry.

Often people tell me I look really good, and no one would ever guess I was undergoing chemotherapy. My hair is growing thicker and longer. My muscles stronger. My balance is returning. My colouring looks pretty normal. But we never know what people are going through when we don’t actually know what they’re going through. Everyone has something … I’m often reminding my kids to extend grace.

This chemo brain thing I’m going through can be so frustrating and so sad. The violas this morning were just one more reminder that no matter how hard I try, I’m not the same person that I was. Don’t get me wrong: I’m thankful for the chemo. It’s this amazing and ridiculously expensive new gene-targeted therapy and it’s working well and I’m doing pretty well with it. I’m so thankful. I’m thankful for the IV chemo that I went through last Winter-Spring. I still suffer from side-effects from it (hearing loss, nerve damage in my feet, etc.), but it destroyed a lot of cancer and I’m grateful. The chemo brain is a small price to pay for being alive, and it feels petty to say it, but it’s so hard to deal with sometimes.

It’s hard for me, but it also takes its toll on my family, friends, and others around me. I grieve that because I want to be so much more for them. I want to know my limits. I want to be able to trace the lines of my strengths and weaknesses. But too many times I’ve been blind-sided and I don’t know when I can trust myself. I want to be able to keep my word and not forget or get confused. I want to know when I’m pushing my body too far, and not suddenly fall and scare my kids. I want it to be simple and straightforward, or at the least consistent. It’s not.

I brought the violas in this morning, but I didn’t open them right away. I thought letting them slowly acclimatise to room temperature in their cases might be a better option. I phoned the viola teacher and asked if she had any wisdom for this situation. She said waiting sounded like a good plan.

I waited.

I reflected. This cold viola thing resonated with me in ways I hadn’t expected. It’s Lent, and that also shaped my reflection. I waited, wondering if they’ll be OK, grieving my lapse of memory. I thought about all the people who have encouraged me that I’m doing fine, that everyone does things like this. Lots of people have left their violas in cars overnight in winter and it’s often OK. It’s common to forget things. It usually works out OK.

We wait. We don’t know what the future holds, nor what might blind-side us. We let others down. We let ourselves down. The landscape of our lives can shift suddenly. Tectonically. We don’t know what our future holds.

How do we live faithfully in times like these? I’m working on figuring that out and doing it. I’ve been working on it for decades, and I didn’t have it all figured out before the diagnosis. My world had shaken before. It shook in a new way 14 months ago. Everyone’s world shakes in various ways from time to time. We feel the aftershocks. The Living God is faithful. The sun rises. The sun sets. The seasons change. Great is Thy Faithfulness.

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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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Freedom!

I feel so much better! The side effects of this chemo continue to be difficult, but I’m alive and I can breathe pretty well. There are times when I even forget about the cancer … something I previously hadn’t been able to do since every breath was a reminder.

I used to cough constantly – especially if I was talking. I couldn’t sing, shout, or even talk much since my voice wasn’t working. Walking – even part of a short block – at a brisk pace not only gave me shortness of breath, but started off coughing that wouldn’t stop for up to half an hour. Some evenings I wondered if I could make it up the stairs to my bedroom.

Right now I feel so free! I typically go the whole day without coughing. I can sing a little bit, and shout to my kids if I need to. I still suffer from shortness of breath, but not nearly like it was before: there’s a spring in my step!

free!

Yesterday I took our kids and some of their friends to the park. I cycled there, and together we formed quite the procession on bikes, scooters, a skateboard and roller blades! The kids had a blast at the park and I thoroughly enjoyed watching them and taking photo’s.

Even my chest x-ray last month showed improvement, and chest x-rays don’t show small changes! I am so very thankful for this new chemo and for the greatly improved health I’m enjoying!trying new things!

I have another chest x-ray and an appointment with my oncologist next week, and I am hoping we’ll be able to slightly reduce the meds I’m on and thus hopefully reduce the side effects.

I am so grateful for this freedom and energy, and I want to make the most of it!

I hope that you know deep freedom, and are living life to the full!

PS: Guess who we keep finding at the park … a gift that brings us joy!

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Poison me, please!

No Charge

I’m so grateful for this new chemotherapy which has significantly reduced my cough! I typically cough much less in a day than I previously would have in an hour. I can talk all day long virtually cough-free. Praise God!

I’m thankful for medical science which has developed so many drugs for cancer (and other) patients. One of the chemo drugs I took over the winter was developed from a relative of the vinca (periwinkle) plant which grows in our garden. How cool is that! I’m not entirely sure why, but I found that deeply encouraging.

Vinca from our garden (In the Spring it sports beautiful dark purple blooms.)

Vinca from our garden (In the Spring it sports beautiful dark purple blooms.)

This new chemo that I am taking is in pill form, so I don’t have as many needles poking into me lately. The last poke I had (Monday) was for blood tests, and I hardly felt it at all. The skill of some nurses amazes me, and I always try to thank them when they do such a good job. The nurses who have taken my blood at the cancer centre are all kind and very skilled. I am so grateful!

This chemo is quite new, and targets the specific gene to work powerfully against the cancer in my body. I am so grateful for this huge difference it seems to be making in my body. On Monday I have an appointment with my oncologist after a chest x-ray. I look forward to hearing my oncologist’s opinion about the effectiveness of this treatment, and possible remedies for the side effects.

I’m also thankful that (for now, at least), I don’t have to pay for my meds. The pills cost $300. per day, which is more than I’ve ever earned! That little pink “no charge” tag is one of the happiest stickers I’ve ever seen … but I can’t help but think of the many people who don’t have this privilege, this free gift which I enjoy.

The line from “The Lord’s Prayer” resonates deeply as I pray it regularly: Thy kingdom come, thy will be done on earth as it is in heaven. God loves mercy and justice (Micah 6:8). What would our world be like if we not only talked like we valued these but also consistently acted like it? What would my life look like? Hmmmm…