In Between Bounces

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Two large cups of Oral Contrast which I drank between 2:30 and 4:15pm, the day of the scan

I had another routine CT scan last week, followed by a few days of fairly typical post-scan fatigue. “You don’t bounce back quickly from these scans,” observed my hubby. We’ve often said this about my energy levels in recent years, but this time these words evoked an image which captured my imagination: a ball hitting a wall in super slow motion. What a perfect picture of how my energy level gets flattened, then takes so much longer to be back to “the new normal”.

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I can relate to that tennis ball, flattened on impact, then regaining its shape ever so slowly! (tennis ball video)

I don’t bounce back like I used to! There are many variations on the, “You don’t _____________ like you used to,” theme. Choose your favourite word or phrase to fill in the blank! I could write a whole series of blog posts about the ways we could fill in the blank, and the ways I grieve and miss my pre-cancer life. It would be easy to get caught up in this way of thinking instead of being grateful for what I can do and what I do have.

Rather than focussing on what I can’t do, I’d much rather focus on what I can do.

My intention is to invest time and energy into my priorities, like family and friends, being involved in church, leading Bible study well, and -lately- caring for lung cancer patients and helping to raise lung cancer awareness and funds for research.

It takes me a long time to bounce back, but in between bounces I’m trying to find my particular niche in the lung cancer landscape. I want to strategically help make a difference for lung cancer patients, improve outcomes and help us hold onto hope.

Lung Cancer is the deadliest cancer. Although it receives only a small amount of money for research, that investment is leveraged into a large impact for some lung cancer patients. Imagine the difference more funding could make!

If you’d like to work with us to explore ways to help lung cancer patients, please message me. It takes a whole team!

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.

 

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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Update from the middle of the night

From my last post:  “… But I want that chemo to kill more of the cancer … and I need to get in to see my oncologist before they will schedule me for more. I was feeling a bit frustrated that the long week-end delayed my regularly scheduled Tuesday chemo date, and now I’m chomping at the bit to get back on track! (… and desperately trying to not succumb to the control-freak part of my nature!)”   Note: I was initially expecting to start my fourth cycle of chemo on February 18th, but I’m still waiting.

Here’s a question I’m pondering in the middle of the night here: Does lying awake in bed developing strategic plans for advocating for myself to get a chemo appointment *necessarily* define me as a control-freak?

I left multiple messages with the phone systems in both my oncologist’s office and chemotherapy booking on Monday, then again on Tuesday, and I’m feeling frustrated that no one has returned any of my calls.  Not even a “Sorry you got the wrong number,” reply or, “We’re really busy but we’re working on it because we know this is important to you,” or, “We’ve got your messages, and if you’d please stop calling we’d have time to actually book you an appointment!”  Nothing. So when I woke up with my mind racing, I eventually decided to come downstairs in the middle of the night and leave more messages. Sometimes action helps. If I don’t hear back by 9:30 am, I plan to go in person to the chemo scheduling office and see if I can talk to an actual person. If that doesn’t work, we plan to contact some of the people we know who can help us navigate the system.

Sometimes action helps, but my mind is still racing. Those of you who think I’m so full of faith, remember this moment! There’s a great verse in Philippians (4:6,7) which is much easier to memorize than to consistently live: Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. I was praying on Monday and I felt peace. I was praying on Tuesday and I felt peace. Here and now, in the middle of the night, my mind is racing and although I’m trying to pray, I’m not really feeling the peace!

Time for a new strategic planning session! Warm milk. A couple of Psalms. Asking God to help schedule the chemo (again), find things to be thankful for as I ask. I go to the cupboard for a mug, and the one right in front is a gift from a former student leader who was visiting town this summer. It reads, “Faith is not knowing what the future holds but knowing who holds the future”. (Insert thankful smilie emoticon here!)  I’m now sipping from it – good plan! Now I’ve read Psalm 34 (one of my many favourites)  I will bless the LORD at all times; his praise shall continually be in my mouth.  … I sought the LORD, and he answered me, and delivered me from all my fears.  … good Psalm, good plan. As I read it, I could feel my fear and stress starting to melt and my world getting a bit bigger. There may possibly be more in the universe than my next chemo. I’m sorry for my narrow-minded control-freaking focus on that one thing. I thank God for many of the kindnesses of family, friends, acquaintances and strangers, and I thank Him for many of his good gifts to us. This is helping. This is helping me to remember what is true and real. “…though we stumble, we shall not fall headlong, for the LORD holds us by the hand.” (Psalm 37:24) I thank God that I had peace and trust earlier that He was is ultimately in charge of my chemo schedule and would will take care of me. I go back and edit that last sentence, thanking God again! I edit again to, “… and you are taking care of me.”  Psalm 38:9 & 22 read, “O Lord, all my longing is known to you; my sighing is not hidden from you.  Make haste to help me, O Lord, my salvation.”  Psalm 40:17 says, “As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God.”  I keep reading, and so many verses jump off the pages at me. I should not be surprised that this happens: it has happened so many times before. I am thankful. Not fully filled with peace, but I think I’ll keep reading and praying and sipping … my “cup” doesn’t feel like it’s overflowing yet, but the peace is growing, my mind is slowing down, and I think it’s nearly time to brush my teeth and head back to bed …

… and if I don’t hear back by 9:30 9:00 am, I plan to go in person to the chemotherapy booking office at the hospital and try to talk with an actual person!

Beautiful delivery Tues. afternoon!