Thankfulness

Challenges and Choices

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I won’t lie. This past month has been a challenging season, due to pain, nausea, fatigue and breathing challenges. Living with cancer can be very challenging, but thankfully the pain, nausea and fatigue are improving. I’ve had to hunker down and rest a lot, but am thankful to still be able to spend a little time with people, get some exercise and continue to do some advocacy work. We don’t get to choose all of our life circumstances, but we often get choice in how we respond. We can control the things we can control. Choosing to give thanks even in the midst of challenges can be a real game changer.

The upper endoscopy which happened the end of September (mentioned in the previous post) went well. We learned that my esophagus (food pipe) had narrowed to the size of a pin prick. No wonder swallowing was so challenging! The next day the phone rang with an appointment for a stent to be inserted in my esophagus the day after. A stent is a flexible tube to help keep the esophagus open to make it easier to swallow food and drink. I was very thankful for the opportunity to take advantage of a cancellation and get this taken care of quickly. That procedure was harder on me than I anticipated, and I slept for some time in the hospital afterwards. I’m thankful for Jackie Manthorne, President and CEO of Canadian Cancer Survivors Network (pictured below) who waited patiently, helped get my prescription meds and got me home safe and sound. So many people have supported by driving to and/or from appointments. What a good gift! Because this time was such short notice I put a request out on facebook, and had multiple offers within a few minutes. Thanks also to Robyn Denis who drove me to the appointment. So many have offered and have driven, and you have no idea how much it means. Thank you!

Awesome advocate Jackie September 2022
Awesome advocate Robyn 2021
Awesome advocates: Robyn’s daughter Elizabeth with Dr. Paul Wheatley-Price. Photo credit: awesome advocate Chris Draft
Kim Andrea and Robyn – awesome advocates. Photo credit: Chris Draft 2019

I’m very grateful that swallowing is so much easier than it was in September. In addition to liquids and puréed foods, I can carefully chew and swallow soft foods. This helped make (Canadian) Thanksgiving Dinner much more enjoyable. Very thankful for my middle child and her boyfriend who cooked a delicious vegan dinner for us. There was tons of food, mostly on the kitchen counter since it would not all fit on the table. I still eat very small portion sizes, and could not finish all the yummy veggies on my plate that evening.

Canadian Thanksgiving 2022
Canadian Thanksgiving 2022

I’m also incredibly thankful for the gorgeous weather we’ve enjoyed this Fall. I went out walking as much as I could, often with my youngest who I’m so grateful for, and our big sweet dog. Here is some of the beauty we’ve been able to enjoy this past month.

Today I’m especially thankful for two dear friends who popped by this afternoon. We are blessed with so many good people who generously support us. Love and support can make a world of difference, especially during the challenging seasons, and I can’t tell you how much that means.

Could I challenge you to choose a friend or neighbour to reach out to with love and support in the next few weeks? This does not need to be someone affected by cancer, but could be someone going through a difficult season. Please never underestimate the difference you can make for someone!

November is Lung Cancer Awareness Month! What is your Cancer Centre doing to celebrate survivors and raise awareness?

August 2021
Awesome advocate Catherine 2021
August 2021
Awesome Bill Weir Photo credit: Chris Draft 2022
Awesome Lisa Weir Photo credit: Chris Draft 2022
Photo credit: Awesome Chris Draft 2022
Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, 2022
Awesome advocates at ribbon build in honour of the awesome advocate Brigitte, September 2022
Ribbon build in honour of Brigitte. Photo credit: Chris Draft September 2022
Photo credit: Chris Draft September 2022
Photo credit: Chris Draft September 2022

Scan results

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Scanxiety is real… the anxiety many of us can feel around scan time. Most who’ve been diagnosed with lung cancer are on treatment, whether it’s a targeted therapy in pill form, chemotherapy, immunotherapy, or a new kind of therapy devised by researchers to keep us living longer and better. Whether alone or in combination, most are on treatment and get regularly scheduled scans to see if the treatment is working.

Sometimes some get cues that the cancer may be growing or shrinking, side effects that may be indicators, that might give an idea of what is happening inside our body. Often it’s a mystery. Lung cancer can be sneaky.

My 13th round of chemo was on Thursday August 12. I also continue to take a daily targeted therapy, Lorlatinib. This combination has growing popularity with some of the top lung cancer doctors in the US. I’m thankful to be able to have access to both treatments here. Lorlatinib is very effective at keeping the cancer from spreading to the brain. My CT scan was Monday morning (the 23rd), and results just came in: all is stable or slightly better! Such great news when someone gets good scans!

In the past few months, Several dear friends have gone through progression and questions about what kind of treatment path to take forward. Some have faced serious health challenges. These can be scary times. So grateful every time there is good news. We keep holding onto hope for more research to bring more treatment options which will help further extend life. Often there is uncertainty, and it can look like the research may not be keeping up with the need. And then there’s the issue of access: what about people who cannot use a treatment because they can’t get it? Maybe it’s too expensive or not available where they live or when they need it?

Lorlatinib is a drug that has helped keep me alive and living very well for years. I’m very grateful for it and have been working with others for some time to get better access to Lorlatinib for more Canadians. I’m thankful for the compassionate release program from Pfizer which has meant that every month a package of life-extending medicine, probably worth over $10,000/month, is delivered to the door at no charge. This morning, a cheery FedEx employee handed over the small box with a lovely greeting. He had no idea how thankful I am for that delivery.

Very grateful to continue to receive free Lorlatinib and that scans are good. Very thankful for researchers, clinical trials opening space, terrific care teams, dedicated advocates, and hope. It’s so important to hold onto hope.

(Apologies for the older photo’s. My phone is not currently working.)

Three More Reasons to Hold onto Hope

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In a challenging season, there are opportunities to be seized. When life is hard, there is still good going on. Here are three more reasons to hold onto hope…

3) Canadian Cancer Society/Canadian Institutes of Health Research Cancer Survivorship Team Grants

Last summer Jennifer Wilson, director of research operations for the Canadian Cancer Society, asked me to serve with some awesome review panelists to help decide which survivorship team research projects would receive funding. The $10 million competition, CCS/CIHR Cancer Survivorship Team Grants, had the goal of improving health outcomes for cancer survivors. We anticipated that at least four teams would be funded, but then just before the announcement could be made, COVID-19 struck.

Everything changed.

Prior to COVID-19, this $10M competition would have been the largest investment in cancer survivorship research ever made in Canada at one time.

The recipients were announced this month. During the delay brought on by COVID-19, additional partner funds were secured from the Alberta Cancer Foundation and McMaster University, which enabled SIX grants!!

Jennifer Wilson and team worked hard during a global pandemic to make the largest investment in cancer survivorship research even larger! Way to go team! Here is the announcement

  • Fellow panelist Dr. Vicky Forster and I at the Toronto CCS offices Autumn 2019

2) Great news! The US FDA approved SEVEN new lung cancer treatments in May 2020 (during COVID-19)!!

Tabrecta – Capmatinib (METex14)

Retevmo – Selpercatinib (RET)

Opdivo – Nivolumab + Yervoy – Ipilimumab

Tecentriq – Atezolizumab (first line)

Alunbrig – Brigatinib (ALK)

Opdivo – Nivolumab + Yervoy – Ipilimumab + chemo

Ramucirumab – Cyramza + erlotinib – Tarceva (EGFRex19 or ex21)

WOW! WOW!! WOW!!!

What tremendous achievement from multiple teams! Time to celebrate!! #ResearchMatters

1) What a feeling!

This is insignificant in comparison, but I am also thankful because I have feeling in my hands this evening.

Neuropathy (nerve damage / dysfunction) is a common side effect from some cancer treatments. My hands have been generally numb or in significant pain (usually burning, stabbing or electrical) for the past six and a half years of survivorship. I try to keep perspective, since these are side effects of drugs that are keeping me alive.

Tonight I was making biscuits, and as I rubbed my hands together to remove bits of dough, I realised that I could feel the palms of my hands. They felt almost normal, and they still do, a few hours later. Happiness and gratitude! So thankful to be alive six and a half years after diagnosis!! My kids were 6, 10 & 12 at diagnosis, and now they are 13, 17 & 19. That means so much! I’m so glad I get to be here with them. So very grateful!

The costs of survivorship are real. New and improved treatment options mean that (in general) people are living longer and better post diagnosis. Survival rates vary significantly, but about two thirds of people will live at least five years after a cancer diagnosis. This means that over one million Canadians are now living with cancer, and that number is expected to rise dramatically in the next twenty years. (Canadian Cancer Society statistics)

Research matters, to improve both quantity and quality of life.

Research brings hope.

Hold onto hope.

Thankfulness at the End of the Decade

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Thank you for supporting Team Jill in the Super Bowl Challenge! Together we raised over $1000., whether you count in Canadian or American dollars! That is over $1000 that would not have been raised if Team Jill hadn’t taken action to raise lung cancer funds, and if some of you hadn’t taken action to give them. Thank you! Thank you also for your many encouraging words of support, the “likes”, retweets, shares, etc. This kind of support matters too! While writing this, another person gave $50. Thank you!

All together so far, the Super Bowl Challenge has raised over $77,000 USD. That is money that might not otherwise be raised for lung cancer. The SBC has ended, but you can still give until Feb. 3rd. Thank you Chris Draft and Team Draft for the work you put in to make the Super Bowl Challenge happen this year. What a great opportunity for cancer centres and other charities to raise funds and get huge publicity for the important work they are doing!

As the year-end draws near, I’m thankful for life and meds that help keep me healthy, thankful for all I was able to accomplish this past year. A lot of the work I’m doing is new for lung cancer. For example, I’m the first Canadian Cancer Trials Group lung site patient representative who has been affected by lung cancer. Before my oncologist asked me to sign up, Carol had been kindly representing lung cancer patients, even though her cancer experience was a different kind of cancer. We owe a debt of gratitude for the good lung cancer work being done by people not affected by it. Much lung cancer work has been left undone. Many groups are only starting to wrestle with how to include the patient voice. Some are not yet convinced of its value. Being the first in new territory is harder, like carving a path in the jungle. (My University degree in Engineering where I was sometimes the only woman in classes of a few hundred men, and summer work where there was no women’s washroom, helped prepare me for this, along with summer work tree planting and working as a surveyor – not in a jungle, but in all kinds of terrain in the Ottawa region.) I work, not just to do the work, but also to carve paths to (hopefully!) make it easier for others who will come after me.

There are a few interesting projects in the works, which may be announced soon. I’m also sharing my story at my hospital in January, and continuing with my usual volunteering as patient representative for the Canadian Cancer Trials Group, The International Lung Cancer Foundation, and at The Ottawa Hospital. Our monthly support group and outreach tables at the Cancer Centre will be ongoing as usual. Too many to list them all!

Here’s a great opportunity for anyone affected by lung cancer in the Ottawa area. Back in November, Dr. Dugald Seely, Founder and Director, Ottawa Integrative Cancer Centre and Prof at uOttawa, set up a meeting with Andrea Redway and me. He wanted input from people with lung cancer experience as his team worked on developing a program for people affected by lung cancer. (He had also spoken at our summit in November.) So nice when others take the initiative for lung cancer. The free program starts January 23, and runs Thursday afternoons. Here’s the link for info and registration. Thank you, Dugald and OICC!

As 2019 draws to a close and we make the most of each last day that we are given of this decade, I have been doing a lot of reflecting. I may share some of it with you, but in case I don’t blog again before January, Happy New Year to you and yours! May the next decade be filled with love, joy, peace and thankfulness.

2 Turtle Doves

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12 Days of Giving to Lung Cancer Clinical Trials

Here’s to all the care givers, whether family or friends, and neighbours and even strangers who reach out with care, knowing that people going through lung cancer, or any tough time, need extra care. It’s not good to be alone. We all need team. Cheers to the people who reach out with kindness, compassion, care, comfort, empathy, gentleness, grace, support, understanding, muffins, meals, encouragement.

We all benefit from from kind words and actions. How much better our world is when people are uplifting, inspiring, cheering, caring and giving.

Reverend Dr. Martin Luther King said, Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.

Cheers to all the people who shine a light. Cheers to everyone who makes this world a better place by walking – even part of the way – through the valley with someone who has received difficult news like a lung cancer diagnosis. Cheers and THANK YOU.

It’s not good to be alone. We are better together, stronger together. #TeamMatters

Cheers to everyone who makes a difference through caring!

To celebrate care givers and survivorship, please give generously to lung cancer research!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #ThankYou

The Inappropriate Ask

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Celebrating 5 years since my lung cancer diagnosis

Truth is, no one really knows how hard it’s been, these last five years. I don’t like to talk about the hard times. That’s part of my coping strategy. I focus on what’s good, what’s beautiful, what’s true.

When I was first diagnosed, I woke up several times in the night. Chemotherapy or cancer side effects, and perhaps the stress of it all. I would look out the window and note the position of the moon and stars in the sky. Knowing they were still there, still moving as they had been prior to diagnosis, somehow helped, and I would go back to bed, back to sleep.

My faith in God has made a huge difference. I am grateful for the love God has shown me, and given me for other people. Any good you see in me is due to the difference Jesus makes in my life. I don’t talk about my faith much publicly, but I’m always happy to. Ask me about Jesus anytime!

It took a whole huge group of people to help keep me alive five years past diagnosis. I don’t know who they all are: researchers, doctors, scientists, statisticians, fundraisers, donors, nurses, administrators, number crunchers, cleaners, clerks, managers … I don’t even know all the categories of people to list, but I wish I could thank every one of them.

Getting me to five years has definitely been a group effort! During the hard times, even the smallest kindness or encouragement can make a big difference. Even a kind word or a greeting called out across the street! Many of you may not know what a significant difference you’ve made for me. Thank you.

While I was writing my blog yesterday evening, a group of amazing friends came carolling and gift-bearing to our door, in honour of my five year “cancer-versary”. This five year journey has been one of unexpected kindnesses, unexpected grace. I could never write them all down.

So many of you have made a difference for me, for my family these past five years. I am hurting my brain trying to come up with a framework which would help me to include and express all the many kindnesses we have received, tremendously moving and generous gifts which have helped us make it through the terribly difficult times over the past five years.

I simply can’t do it. I can’t list all the people. I can’t even categorize the types of gifts you’ve given us. Not even with the broadest of brush strokes or the vaguest of generalities. There is no way this human can find to thank all you wonderful people in one single blog post. 

I can say that each of you, even with the smallest of kindnesses, each of you who have helped us travel through this valley, have made a significant difference. You, perhaps, may have no idea. Thank you.

Thank you for showing love to this person affected by lung cancer. Thank you for showing love and kindness to my husband and children, also affected by lung cancer.

Not everyone has people like you.

Thank you for making a difference in our lives.

Lung cancer friends at Evening of Hope Lung Cancer Fundraising Gala November 2018

Could I ask just one more thing?

Help me win the Super Bowl Challenge! Whoever raises the most money for lung cancer research gets to go, and it’s not just about watching the game. If I win, I will tell my story to influential people who are in a position to help make a difference for people affected by lung cancer. Plus watch the Super Bowl … in Atlanta … in the Winter!

I would LOVE to win! Please help me!

Please click this link and help me win


https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

… Was that inappropriate?

Here are just a few special moments of lung cancer work over the past couple of years…

Please click this link and help me win!


https://www.crowdrise.com/o/en/campaign/jill-hw-love-songs-for-lungs

(Was that inappropriate?)  Thank you!

Seize the Day!

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Wednesday morning I got up, went to wake up my daughter, and knew I had to go back to bed. Jono (my husband) called the cancer centre, and the nurse said, “Go to Emergency!”. So I spent Wednesday at the hospital. I slept in various chairs in a variety of spaces, generally upright, with blankets wrapped around me for most of the day. Tests, IV fluids, pills … eventually I started to feel better and they let me go home to my own couch and my own bed.

IMG_20181205_161350199.jpgI am thankful.

For health, for healthcare, for a caring oncologist, for great nurses, technicians, doctors, researchers, cleaners, administrators …  Thankful to be home and on the mend.

Who knows what tomorrow holds?

Don’t wait to do good. Do it now!

Say those encouraging words.

Tell them you love them.

Make the donation.

Do that one task.

Make the call.

Apologize.

Pray.

“Why I am Thankful”

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This past week-end, we celebrated Thanksgiving here in Canada, and did we ever celebrate! It was a terrific weekend, with delicious turkey dinner made by generous friends, a beautiful hike, and good times! We have so much to be thankful for, don’t we!

Rugby on a sunny day!

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Our minister asked me to speak for a few minutes at church on “Why I am Thankful”. I was grateful for the opportunity, and glad to do it! I don’t have the exact words, but here is a draft version in case you’re interested.

I’m not a naturally thankful person. When I was a kid, I didn’t argue much with my Mom, but I remember many disagreements about thank you notes. I never wanted to write them. I didn’t see the point. Saying thank you never came naturally to me, and I guess that’s not surprising because by nature I’m a pretty proud and selfish person.

When I was in High School, I met a few people who were different. I couldn’t put my finger on it, but there was something about them that set them apart from other classmates. One day, during an assembly, they were up on stage inviting us all to the Christian club. I was intrigued. I wanted to know more about Christianity.

I didn’t grow up in a Christian home. I tried going to church a bunch of times with friends, but I never really understood what Christianity or church was about.

Those Christians at my High School got me curious. I started reading the Bible. I started in the gospel of John. Jesus amazed me! He was like no one I’d ever imagined, and I wanted to know more.

I learned that God loved me unconditionally. There’s a verse in Hebrews 13 that jumped off the page at me. God promises to never ever leave us, nor never ever forsake us. That’s powerful presence, powerful love.

I knew I could never be good enough to deserve that kind of love, but the amazing thing was that God didn’t want me to fix myself before I became a Christian. Good thing, because all my efforts at that were obviously futile.

God had a much better plan. Jesus died and rose from the dead, inviting us into abundant life in relationship with God.

When I became a follower of Jesus, my heart began to change and some really good things started growing in me. Like thankfulness.

God commands us to give thanks, so it must be good for us, but sometimes that’s a very hard thing to do. Living on this planet can be … challenging. Sad things happen. We encounter horrible things. It can be easy to fall into the downward spiral of looking at the difficult experiences and not the good gifts. But life is a good gift. Each day is a good gift. If we pay attention, there are many good gifts to give thanks for every day, and giving thanks makes my life a whole lot better.

We need to train ourselves to note and appreciate the good gifts, and to close the loop by giving thanks to the Living God who is the Giver of all Good Gifts. Fortunately, we’re not alone: The Holy Spirit is right with us, teaching us, reminding us, helping us, encouraging us, and cheering us on!

In short, I am thankful because the Living God has changed me, and because He regularly draws my attention to good gifts and helps me to thank Him for them.

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We celebrated Jono’s 49th with a few friends from our street. We are blessed!

I am grateful for you, dear readers, and the ways you encourage us, pray for us, and cheer us on. Thank you!

 

 

 

Thankful for Little Things

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Two little updates today, for which I’m giving thanks!

First, my feet have been mostly numb since my IV chemo back in 2013-14, but recently I’ve started occasionally having more feelings in my toes! The other day I could feel sensations between my toes and sometimes I feel under my toes. Yesterday I could feel the coolness of the floor on my baby toes. This might not seem like much, but I’m very grateful. It helps me to balance better, and may help to prevent injury. Plus, I don’t really like feeling like I simply have big blobs at the end of my legs. It’s nice to feel more like I have feet again. Woo hoo!

Second, my CT Scan pre-medication protocol is on holiday this week! To make a long story short, I just learned that I have permission to NOT take prednisone in preparation for my CT Scan tomorrow. This is a little bit risky, since I may be allergic to the contrast dye they give me during my scans. But it looks more likely that I’m not allergic and if that is the case then it would be so good to not have to take huge doses of strong medications unnecessarily. I hate being a whiner, but it is exhausting, and I’m thrilled that I don’t have to go through the whole process of setting my alarm twice tonight to take the meds. Having said that, allergic reactions to this contrast dye can be serious and I’m feeling a bit nervous about that possibility. So, if you’re a praying person, please pray! The allergist and radiologist and I all think it’s worth the very small risk. So I hope it’s a wise choice and that everything will go well tomorrow! If so, I may not have to take prednisone before CT Scans again!

In other news, I may be speaking and/or singing at a couple of fundraising and awareness-raising events about Lung Cancer in November. As always, I’m trying to figure out how much energy I have and where is best to invest it. But November is Lung Cancer Awareness month, so this is definitely worth considering. I’ll let you know more later!

Hope you are all well, and giving thanks for good gifts both big and small!

 

Marathon Weekend

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Like many weekends for most of us, this past weekend was a marathon for our family … but what made it different was that my husband actually ran the marathon, and the kids and I volunteered at it!

Jono has run a few marathons before, but this time he ran to raise funds for the Ottawa Regional Cancer Foundation. Thanks to the generosity of a cheering crowd of supporters, not only did he run a personal best 3:25:29 but he also raised $1725 (so far)! We are happy with his achievements, and so glad that he is recovering well from the run.

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No pressure, but if you want to give, there’s still time: http://ottawacancer.kintera.org/ottawaraceweekend/jono

Speaking of recovery, at the end of each race is the “recovery” area where volunteers give food and drink to the runners. The kids and I volunteered there on Sunday, setting up and handing out yogurt, chocolate milk and bananas. It was a privilege to be part of the team who served 47,000 runners this weekend. So many of the runners expressed gratitude for the volunteers who served in a variety of ways. We were there for about 4 hours, and I am thrilled to report that I was able to complete my shift! I was exhausted afterwards and very stiff, but I also recovered well from my volunteering “marathon”.

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A quick photo with our friend who coordinates volunteers and generously welcomed us to her team. (My daughter was the youngest there.)

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Calm before the storm! It was a privilege to be part of the team who served 47,000 runners this weekend with a smile! Very well organized effort!

The past few months I’ve been deliberately pushing myself harder and harder to try to increase my endurance. Life is a marathon! I’m noticing my stamina has improved and also my ability to bounce back after exerting myself. I’m still not well enough to take on a job, but if this trend continues, I’m very hopeful!

Also on the weekend the kids and I put on a lemonade stand fundraiser for the Cancer Foundation. We surpassed our fundraising goal and raised $225.25! Thank you to all who encouraged our kids and donated!

We’ve been fundraising because I have the energy to, and because we are grateful for the ways the Cancer Foundation has helped our family and many others, through clinical trials, workshops, coaching, classes, etc. I have recommended their cancer coaching to two people this week alone!  The Ottawa Regional Cancer Foundation supports people who have been diagnosed with cancer and their families and friends. For more information: http://www.ottawacancer.ca

Now it’s time for a break from fundraising, time to focus on the next chapter, the next segment of our race. I don’t know what’s next, but I’m looking forward to it!

How’s your marathon going? Is it time to take a break from something? Time to dive into a new challenge? Time to keep on keeping on in some rough terrain? Are you running a good race? Looking forward to what’s coming next? I hope you are, and I hope you are surrounded by teammates who cheer for you and support you!

Thank you for cheering us on in our marathon … we all do better with encouragement and support, don’t we!