Looking intently…

IMG_9372

It’s been too long since my last post. I know this because so many of  you dear folks have been asking how I’m doing. I apologize for causing you concern. I am grateful for your care, kind words and prayers. I’m not really sure why I haven’t posted in such a long time … part of the answer is that I have been busy living life rather than writing about it! I’ve jumped into some new hobbies which have held my limited focus. Part of my current reality is decreased discipline and increased forgetfulness, and not really feeling like spending much time on the computer.

But probably the deeper reason I haven’t posted with my typical frequency is because I have needed time to work through some cancer grief. Cancer attacks and steals too many beloved people, and some days that’s really, really hard. This winter has been a hard season, but not without grace and joy and beauty. Sometimes we have to look intently …

March brought scans and good news from the oncologist: cancer is shrinking! Praise God! Each month a large box arrives by courier, free of charge, containing my supply of pills. Four in the morning and four in the evening. Each time with a high fat large snack or meal. No wonder people on this med tend to pack on the pounds! I am no exception, and I am happy to be alive and fat, though many of my favourite clothes aren’t fitting. Alive! So much to be thankful for! We rejoice!

IMG_9510.jpg

I feel better than I have since before my diagnosis. I’m still tired and have various aches and pains and side effects, but so much better than the side effects of any of the other treatments! Praise God!

In March, our middle child went on an exchange to a small hamlet in Northern Canada. What a great opportunity for which we are very thankful! The youth from up North are scheduled to arrive here for six days next month! When we first signed him up, I told the group I wasn’t sure how much my health would allow me to help. I am thrilled to say that by God’s grace I’ve been able to do my part, including baking several dozen cupcakes in February, and making art for a silent auction fundraiser.

IMG_8938.jpg

IMG_9178

I hunkered down* through the last of the Winter, and threw myself into a variety of creative pursuits. I made three long scarves, numerous beaded jewelry items, and started painting for the first time since I was a kid. Painting became part of my Lenten pilgrimage, and I learned more about looking intently. I was pleased with the pictures I made, and had fun doing it! I found inspiration in the daily bird calendar, which is obvious if you look at my work! Here are just a few, starting with the Toucan which was my first ever:

*Hunkered Down is a reference to a Malcolm Guite poem that has been rolling around in my heart and mind this Winter season. You can read /hear it by clicking on this link: Malcolm Guite “Because We Hunkered Down” Feb. 2017

Here is my Easter 2017 picture:

IMG_9438.jpg

This next one was inspired by my son’s trip up North. I made it for the silent auction, but it was kind of hard to let it go! The words in the “footprints” are from “Dene Laws”, which he saw at the Northern school. The person who won this item in the silent auction was one of the trip leaders. He took photo’s which inspired me to make this art, so I’m really happy he has it!

IMG_9493.jpg

I’m always eager to head out in search of Signs of Spring! What a gift to be able to be out walking and breathing (fairly) easily! I’ve enjoyed many walks with family and friends. So much beauty! So much joy! Grace abounds! Looking intently …

Before I forget to mention, I’m off in the morning to Washington DC, for LUNGevity’s big Lung Cancer patient HOPE summit, which runs Fri. evening – Sun. I’m also attending the Advocate summit all day Friday. I’m looking forward to connecting with some excellent people and hoping to learn a lot! I’m thankful for the anonymous donor who made it possible for me to go, and I hope to honour that generous gift and make a difference! Being away for four days is a huge step for me, and it will take loads of discipline to not overdo it! If I’m up for it, I may tweet about it #DCHOPE17, and possibly post on fb. I certainly plan to update my blog upon my return! 🙂

Very often I am deeply moved by the care and compassion that dear people show. I promise you: it makes a difference! It’s hard work, being a cancer patient. Thank you for helping our family carry this load! You never know the full impact of a kind word or deed. Look intently for signs of love and goodness, and know with certainty that grace abounds even beyond what we can imagine or see! May you receive showers of blessing, and may you see flowering and fruitfulness resulting!

IMG_9063

IMG_9127

IMG_9164

IMG_9215

IMG_9380

 

 

 

November Awareness

November is Lung Cancer Awareness Month. If you follow me on Facebook, you may have noticed I changed my profile and cover photos for November. Have you noticed any other indications of Lung Cancer Awareness Month? I haven’t seen many.

thumb_img_7641_1024

Did you know that Lung Cancer is by far the most common type of cancer, and by far the leading killer (of all cancers) in Canada?

Did you know that Lung Cancer kills more than 20,000 Canadians each year? Did you know Lung Cancer kills more people than Breast, Prostate and Colon Cancer combined?

I learned these sad facts through my involvement with Lung Cancer Canada.  lungcancercanada.ca They’ve got a few events that I’m planning to be at this month, including the Lung Cancer Patient Summit in Toronto and the Lung Cancer Canada Evening of Hope in Ottawa. I’ll be speaking at the Ottawa event. Busy month for me!

November can be a rough month, especially if one spends time reflecting on numbers like these.

Lung Cancer research is shockingly under-funded, especially when compared with funding for other cancers which don’t take nearly as many people away from their family and friends. Lung Cancer accounts for 25% of all cancer deaths in Canada. Ugh.

I’m thankful that these numbers aren’t the whole story! I’m thankful for researchers and doctors and nurses and administrators and fundraisers and so many generous people who are working hard to change these horrible stats!

I’m thankful that this clinical trial I’m on is making a huge difference for me and my family and friends. I hope this drug will help many more who follow.

I’m thankful for hope, and those to seek to inspire it for lung cancer patients.

Some members of my lung cancer community talk about “Outliving Lung Cancer”,  “Shining a Light on Lung Cancer”, and “Hope Beyond Cure”.*  I am thankful for them and for the hope that they help inspire in me and many others. Hope is good!

*  outlivinglungcancer.com   hopebeyondcure.com

I don’t know much about serving as a patient advocate, and I don’t know if this is my calling, but I’m hoping I’ll learn more, meet some great people, and be encouraged at these Lung Cancer Canada events this month. I’ll let you know how it goes!

This month I’ve been enjoying lots of walks, aiming to gradually increase my fitness. Let me show you some of the beauty I’ve been privileged to see … even in November! 🙂  Thank you for journeying with me: it’s good to have companions!

img_7698

img_7763

img_7739

img_7781

img_7884

img_7846

img_7764

img_7871

 

 

 

“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!

IMG_5805

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

IMG_5807

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!

IMG_5816

Two ducklings with their mama

IMG_5826

Wood duck reflection

IMG_5829

beaver? muskrat? otter?

IMG_5833

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

IMG_5836

Night Heron

IMG_5843

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

IMG_5801IMG_5798

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

IMG_5858 IMG_5864

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!

IMG_5511

Group hug! Goodbye to good friends!

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

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?

IMG_2662 IMG_2628IMG_2670IMG_2654IMG_2738IMG_2649 IMG_2754 IMG_2575 IMG_2730IMG_2491