Saying Yes to New Adventures!

I did something new and exciting … and a little scary!

You can read more of the story below, but right now I just can’t wait to tell you my exciting news!

For Lung Cancer Awareness Month, I made a short video called, “What can Jelly Beans Teach us about Lung Cancer? You might be Surprised!”

I’m proud of this little video! It’s my first attempt and it’s rather rough, but it’s real and from the heart, and I’m honoured to share it with you!

This whole adventure started back in October when I chose to have a week of saying yes! I decided I would stretch beyond my comfort zone and do things that frightened me!

The next day, the phone rang and I was asked to speak at a fundraiser for Lung Cancer Canada. I said a fairly quick yes, and then started thinking about it!

The more I thought about it, the more nervous I got!

The fundraiser would be in a restaurant, but there wasn’t going to be a microphone, or even a section of the evening when I would give a speech. Giving a speech like that makes me nervous, but I’m getting used to that kind of nervous.

No, this time I was expected to initiate conversations with a bunch of strangers and somehow find a “natural” way to tell them things about lung cancer. That is scary for me!

I couldn’t imagine how to make this happen. I mean, I could easily picture far too many awkward ways of doing it, but there had to be a better way! What would help me feel more comfortable starting up conversations? How could I teach a bunch of strangers about grim lung cancer statistics at a restaurant?

So I came up with an idea! I got a few items together and worked out a little interactive spiel, and then I went to the fundraiser.

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I did not expect it to turn out so well! The woman organizing the fundraiser was so lovely, and the family and friends who had shown up to support her were kind and encouraging. Most of them wanted to hear what I had to say, and quite a few were very keen. I gave out some of the Lung Cancer Hope Rocks too! #LCRocks

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What was so powerful for me, though, was to watch the looks in their eyes as the penny dropped. Wow! These simple jelly beans were helping the message get through! When those moments kept occurring throughout the evening, I had a growing conviction that I needed to find a way to get this important message out to more people.

So that’s why I said yes to another scary idea and made the video!

Obviously, the video isn’t an interactive dialogue like all my jelly bean conversations have been, but because this is such an important message, I’ve chosen this media to communicate more broadly than I could do in small groups or individual conversations.

November is Lung Cancer Awareness Month! Please honour me by setting aside ten minutes: seven minutes to watch the video and three minutes (or more!) to consider what your response will be.

There are many people who played various roles in helping, supporting and encouraging me along this whole jelly bean journey. Thank you! I am especially grateful for the technical support and encouragement of Jith Paul of Treepot Media. Thank you, Jith, for your partnership in the making of this video. I literally could not have done it without you!

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Front Page above the Fold

A terrific opportunity fell into my lap last week. The opportunity to tell about a unique support group which is making a difference for Ottawa area Lung Cancer patients.

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November is Lung Cancer Awareness Month #LCAM and things are ramping up in the Lung Cancer Advocacy world.

I’m fairly new to this world, but lately I’ve been feeling a growing sense of urgency – perhaps even a “calling” – to speak out on behalf of so many lung cancer patients who can’t. Watch this space as I plan to post more often than usual throughout November.

The day after the first ever meeting of the Ottawa Lung Cancer Support Group, the leader asked if I was willing to be interviewed for a story about the group in our local newspaper.

I’m so grateful for my fellow participants and our lovely leader, but when the reporter asked me to tell him about members of the group, all I could say is, “Support Group is like Fight Club [a movie I’ve never seen]: what happens in support group stays in support group!”

Somehow I found things to say that did not breach confidentiality, and the reporter managed to tell the story very well!

Thank you to Blair Crawford and Wayne Cuddington of The Ottawa Citizen for kindly and skillfully telling the story of the first ever Lung Cancer support group sponsored by Lung Cancer Canada in partnership with the Ottawa Regional Cancer Foundation and The Ottawa Hospital Cancer Centre. November is Lung Cancer Awareness Month #LCAM

Click here to view the web story with a video clip

 

 

Last night I had a dream

Last night I had a vivid dream: I was piloting a small two-seater plane and it was going down!

I was flying along and all was well, then suddenly everything went black! When I came to, we were plummeting to earth. We were going straight down! I desperately reached for the controls, and not knowing how exactly it happened, I somehow landed on a fairly pleasant island. I walked around and explored it, met lots of interesting people, but I desperately wanted to go home. I searched and searched but couldn’t find a runway. I went around asking for help, but couldn’t figure out how to get my plane to take off again. I was stuck on this little island. Stuck and yearning for home!

I think what may have triggered this dream was the conversation I had with our 10 year old daughter last night just before bed. A dear friend recently passed away, and we were talking about grief and some of the ways his wife might be feeling, and what the journey of grief is like. And because I take eight pills every day and lung cancer is our ever present reality, lung cancer was there last night too, just below the surface of this conversation with my daughter. I let her bring it up, and we talked a bit about it, and once again I heard words that break my heart, words that no mom wants to hear from her little girl: I don’t remember what you were like before lung cancer.

I’m tearing up this morning, sitting at the computer writing this. I wish lung cancer had never entered our lives. I wish we could escape it. I want to be healed!

Lung cancer unexpectedly plunged our little plane into a nose dive. By some miracle we didn’t crash and burn but now we’re trapped on this little island and it feels very small.

I’ve been privileged to meet wonderful people here. I’ve learned a lot and grown a lot. I’ve experienced so much grace and kindness from many sources. I’m so grateful my life has been extended… but I want to go home: I want to be healthy again! I yearn for life without appointments, needles, scans, anxiety, frustration, daily pills, pain and far too many limitations. I yearn for life without lung cancer!

I dream of a cure for lung cancer!

November is Lung Cancer Awareness Month.

One in thirteen Canadians will be diagnosed with lung cancer.

Lung cancer is the deadliest cancer.

Funding for lung cancer research is abysmal.

Far too many of us are dreaming of a cure for lung cancer.

Would you help us?

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Getting away from Gravity

 

A couple of weeks ago, a friend told me about an “Aquatherapy” class she had tried out. It’s basically gentle movements in a warm swimming pool, geared to people with various kinds of pain and limitations.

After a bit of deliberation, I decided to give it a try.

When I was born, our family lived right on the river. My Mom said I learned how to swim before I learned to walk! I still love being in, on or near water. I feel peace by the water. One of my kids noted that every single piece of art in our living room had water in it!

I went to my first Aquatherapy class last Tuesday, and paid my $5.25 to drop in. I arrived early, met the instructor and told her about how excited I was to be there, that years ago I used to go to that very same facility four to five times a week for their aerobics classes and weight room.

I was a bit of a keener back then! I started to feel thrilled (like an old racehorse who’d been put out to pasture might) with the thought of returning to my old stomping grounds.

I told the instructor I was a bit concerned that I might overdo it, but would try to take it easy … wouldn’t want me passing out in a pool! 😉

But it was REALLY fun! The class was fine, the music was good, the people were kind, and the movements weren’t too hard – more like range of motion, not strenuous. My body relaxed in the soothing warmth, and it felt easy, comfortable, familiar. I didn’t worry about the lack of feeling in my feet. I didn’t worry about stumbling or losing my balance or falling. I felt free, and for the first time in quite a while, it didn’t hurt to move!

Words cannot describe the joy of that hour in the water!

I went back on Thursday and bought a month pass. It’s more than I usually spend on myself, but I think it’s worth it! I went again today, and I’m loving it! My friend and I go together: bonus!

There’s only one part of the experience that I’m not so keen about: climbing out of the pool and feeling the effects of gravity once again. But I think I can learn to cope with that! 🙂

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This is obviously not where I do aqua therapy classes, but that is another story! 🙂

 

 

“You’re not alone”

Having “the conversation” with people you love is one of the hardest things after a cancer diagnosis. Three and a half years later, I clearly recall some details of those painful conversations when I told my friends or family that I had cancer – serious cancer.

The anticipation was horrible. The conversations were difficult, but there were many moments of love and generosity outpoured, both during the conversation as well as afterwards. So much grace that I had not anticipated!

I remember telling my small group. Our group has met weekly for several years to study the Bible and pray together. We had grown to love and trust each other, and these were friends I knew I could lean on. I knew they would be there for me, but I had no idea how much.

“You’re not alone.” The first words I remember hearing from my small group when I told them my sad news. Many more words of love, support and solidarity have followed, but these words echo out across the years. These words echo when my friends pass the tissues and cry with me, when they gather around and pray for me, when they bring me food and organize an army of beautifully generous meal preparers, when they get on hands and knees to clean my house, when they sit with me and listen, when they take my kids out for treats and listen, when they have our family over for an evening of fun, …

It’s not good to be alone. We need each other. We need people to laugh with and cry with. We were made for community.

The gifts that I have received in vulnerable times mean so much, and I am grateful beyond words for the goodness that friends, acquaintances, and even strangers have poured out over us since my diagnosis. God’s presence, faithful love and abundance is always with us – so many passages of Scripture remind us! We have felt embraced by love and generosity … never alone!

Another good gift I have received is the community of lung cancer patients and caregivers. People who’ve had similar conversations with their family and friends. People whose conversations have not always gone well.

I’m grateful for so many of these fine folks I’ve been privileged to get to know online through patient forums. These groups are a good source of support and information for me. I’ve grown to love these people and to think of them as my tribe!

And recently I got to meet some in person through LUNGevity’s Hope Summit in Washington DC.

I left Ottawa one cold and foggy morning in April and arrived in a completely different climate zone. Spring had sprung in DC. I had already missed the cherry blossom festival, but there remained much beauty to behold!

The Patients’ & Caregivers’ Summits began on Friday night, with an Advocates meeting for a number of us keeners on Friday. I arrived on Thursday morning with the whole day stretched out before me. I hadn’t ever met anyone from LUNGevity before, and I was a bit nervous about being there all by myself. I checked into the hotel, right by the beautiful Key Bridge (which crosses the Potomac from Rosslyn Virginia into Georgetown). I was just about to head out the door to find my way to some of the Monuments and Museums in DC, but got distracted by people arriving in the lobby.

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View of the beautiful Key Bridge & Georgetown from the top floor of the hotel

I couldn’t help but overhear one of the conversations … it sounded vaguely like it could be between two LUNGevity friends who hadn’t seen each other since last year’s Patient Summit! I approached and asked if by any chance they were part of LUNGevity, and that is how I met my first two LUNGevity friends, Ivy and Don! They were so friendly and invited me to join them and others for a walk across the Key Bridge to Georgetown for lunch! It was pretty easy to choose getting to know them over sight-seeing!

I never did make it to any museums or monuments, but I have no regrets! I was privileged to spend a lot of time meeting new friends and walking back and forth multiple times across that bridge! No one was left behind … not even people with diminished lung capacity! 😉

I learned more about advocacy and what it means to be an advocate or an activist. Thought-provoking! So many good conversations both as part of the summit and in the unscheduled moments!

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Chris Draft of the Draft Family Foundation: Inspiring Advocate!

So many exciting new advances in Lung Cancer treatments! So many resources! So much reason for hope!

One of the presenters was Dr. Ross Camidge, a well-known expert in my particular type of lung cancer. Late Saturday afternoon I sat beside him at an “Ask the Expert” table discussion. So many questions I could have asked him, but my brain was chock-full of information so we mostly chatted about cross-cultural differences (he’s from the UK and works at the University of Colorado Cancer Center), and he told me funny stories! 🙂

I came away encouraged and inspired! I came home with ideas and direction! I’m so grateful for all the LUNGevity folks who welcomed me, and for the anonymous donor who made it possible for me to be there. Thank you!

But mostly I came away with a strong sense that I am not alone! There are so many others walking similar paths, and I am grateful for the opportunity to get to know some more of my tribe! I’m grateful to be able to walk across that beautiful bridge! I’m grateful to have met these beautiful people who are walking a similar journey to me – patients and caregivers and others who support and advocate powerfully!

I hope to tell you more in future posts. There is always so much to say! 🙂

Here’s some exciting news about next week: I’m participating in a webinar for Cancer Coaches on Monday afternoon, speaking about my clinical trial experience. This is my first webinar, and I’m grateful for this opportunity! Cancer coaches are a real gift, and they can help you with difficult conversations!

 

 

Holding Hands and Letting Go  

[This is an atypical post, a reflection I wrote yesterday afternoon …]

The realization came as an epiphany while I was trying to squeeze my pregnant bulk behind the steering wheel, and wondering if that would be the last time I would drive before my first baby was born. “Parenting,” I heard myself say, “is about letting go”. These were my last days of constant companionship, when my small child would always be with me. He would one day soon travel through the birth canal as his first of many trips away from me.

Back when her big brothers were very little, they asked me at an evening prayer time if they could ask God for a baby sister. I said yes. Shortly after that, we learned we were expecting! Her name means, “The Lord has heard our prayer”, and we named her largely because of this prayer.

I remember walking with both boys to school when I was pregnant with their sister. Holding hands together with them, one on each side and my baby bump growing larger day by day. It seemed manageable with two hands and two sons, and I wondered how the shape of our family would change when our children outnumbered my hands!

She came rather smoothly one January day. By this time we were fairly experienced parents. We knew how things worked: you go to the hospital pregnant and you come home with a baby boy! When our daughter was delivered and the doctor invited my husband to declare whether the baby was a boy or girl, there were several moments of stunned silence … a girl? A girl! Joy and laughter!

Our girl who learned to walk and talk, cheered on by adoring brothers. We read stories to her and sang songs for her and always there were plenty of loving hands for holding!

In September of Grade One, I walked her to her new school, feeling the smallness of her beautiful hand in mine, cherishing these moments with my girl, wanting always to remember the feeling of this little hand in mine. When they get older they don’t always hold your hand … but for now I relished those walks to and from school with that sweet, soft hand in mine.

One afternoon during that First Week of School, I picked her up as usual, and as we set off together her precious hand slipped into mine. I was shocked at the unfamiliar feeling: what had happened to my child’s hands? They had suddenly changed! She had discovered the monkey bars and spent every moment of recess swinging on them, quickly toughening up those beautiful hands. Change can be good!

She still loves to swing and climb. I love the strength of her arms and shoulders, her courage and fierce determination. Her love is fierce and sweet and strong.

She began to notice and love a person she sees every week at church. Someone who does not talk with words but whose mouth is filled with laughter. Joy spills out all around him where his attendants carefully park his wheelchair. He is well-loved and appreciated, and Eliana has noticed this. Love for this man grew in her heart, and when we learned that he was suddenly very sick and would probably die soon, we were sad and prayed for peace and healing for him, then comfort for his family and friends and community. When we learned his funeral was Friday, she asked if she could go. We said yes. Thursday evening, the minister called, wondering if Eliana would sing at the funeral. She said yes.

This afternoon, I sat listening to my little girl sing, “Precious Lord, Take My Hand”. I saw her sing with poise and power. I watched her respond with humility and grace to hugs and words of thanks from Brian’s family and friends. I caught a glimpse, an epiphany, a powerful realization of what I did know but suddenly saw anew. The Lord has been holding her hand since long before I did, and will keep holding her, helping her, cheering her on, and growing her.

Looking intently…

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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!

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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.

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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:

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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!

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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!

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