Thank you!

I’m so grateful that I could join about 200 Lung Cancer survivors and 170 caregivers at LUNGevity’s Hope Summit in Washington DC the end of April!

I arrived to cherry blossoms on Thursday afternoon and enjoyed a quick view of some of the monuments and museums from the Circulator Bus. I spent time in the National Museum of African American History & Culture. I’m grateful for the few hours I got to play tourist, the many steps I walked (about three times my usual), and the healthy food I was able to buy from a grocery store. I went to my room early and slept well in preparation for the packed schedule the next three days!

Friday was a special Advocates day, then a welcome reception to kick off the week-end. We listened to speakers, met amazing new friends and reconnected with dear folks who feel like family!

So much exciting new research! So much joy and love, tears and hugs. So much hope!

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Jill & Jill  # This Is Hope

I came home refreshed and renewed, encouraged and energized! I came home with inspiration, instruction and ideas! I came home with deep gratitude for the people who make this Hope Summit what it is: organizers, speakers, participants, and generous supporters like many of you!

Thank you for helping me go! Thank you! Thank you! Thank you!

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Linnea has the same type of LC as I do, and is celebrating 13 years of living life since diagnosis!

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Canadians are loved, welcomed, and (this year) honoured with a special ribbon on our name tags. (I chose the purple one for fun!)

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Two of us came from Ottawa! So exciting! 🙂

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Five Canadians participated this year! Four of us are pictured here with LUNGevity’s inimitable Katie Brown! How many Canadians will go in 2019?

 

 

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Pre-Election Town Hall meeting

If you’re in Ottawa this Thursday evening, please come to this Pre-Election Town Hall meeting about Major Health Concerns, where I’ll be one of the speakers. I’ll be (briefly) telling my story, and talking about the importance of lung cancer screening and better access to new meds for lung cancer patients. If you can come and offer support, we’d be grateful.

Here’s the link for more details and to register: Pre-Election Town Hall (The event is free to attend, but they would like an idea of how many to expect.)

From the website:

Please join us in Ottawa, our second town hall in Ontario, for a robust and thought provoking engagement with a panel of health care experts and political party representatives on priority health care issues in Ontario.

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.

 

How Two Trips to the Basement Could Save Your Life

How could two trips to the basement possibly save your life or the life of people you love? Do yourself a favour and find out!

There is a lot we don’t know about lung cancer and its causes, but experts say radon is the leading environmental cause of lung cancer. If you live in a home with high levels of radon for a long time, that increases your likelihood of developing lung cancer.

Radon is a radioactive gas that naturally occurs in rock, soil and water. It can enter into buildings through cracks in the foundation and gaps around things like pipes and drains.

We can’t see, smell or taste radon, but there are ways to detect it. It only takes a couple of simple steps to protect ourselves.

First, purchase an inexpensive radon test. There are at least two kinds of radon tests: short-term and long-term. We have used both. We got ours at the local hardware store. They are readily available.

Next, take a trip down to the basement to start the test. The radon test will monitor for radon in your air while you go about your everyday life.

After the appropriate* amount of time, take that second trip to the basement to retrieve your test. We mailed ours into the lab (easy to do), and they sent our results soon after.**

It’s easy to do this test, and it could save your life and the life of those you love. Don’t delay.

Put “Radon Test” on your shopping list. Do it today!

* There are both short-term and long-term tests. I’ve heard you get more accurate results if you do the long-term (three months) one in the Winter (since we don’t open windows much at that time).  It’s not too late to start one now.

** We do not have a problem with radon, and what a relief to know that! If you have a problem with radon in your house, there are people who can fix it for you. It’s not expensive, especially when you consider the alternative…

More info here:

https://www.canada.ca/en/health-canada/services/radon/testing-your-home-radon.html

http://www.lungcancercanada.ca/Lung-Cancer/Radon.aspx

https://www.lung.ca/lung-health/air-quality/indoor-air-quality/radon

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Results are in…

Scanxiety isn’t usually a big problem for me, and I’m really thankful for that. Sometimes the hardest part is waiting for the results, and often that takes weeks.

I’m so grateful for my oncologist. He has occasionally emailed me to tell me good news, which is fantastic, but the downside is when he doesn’t email me I can start wondering if that means it’s bad news. We talked about this some time ago, about how it can be hard to wait and also how no one wants to get bad news about cancer in an email. To be honest, my chemo brain doesn’t remember how we left things.

The other day when I was having a hard time waiting for my scan results, I decided to email my oncologist to ask if he’d seen them yet.

I know what my next steps would be if it’s bad news. If the cancer grows, the plan would be for me to go back on IV chemotherapy because there aren’t any more targeted therapy pills available in Canada yet. (That I know of.) There are several more in the pipeline, but whether I’d be able to get them is the question. The idea is to take the IV chemo and hope that it works until another targeted therapy is available to me through a clinical trial or compassionate release.

This is what it’s like for countless lung cancer patients. This is why research and access to new drugs is so important to us and to our loved ones.

Thankfully I don’t have to take that step yet because the scan results are in and they are good! My oncologist emailed back saying it looks awesome!

Woo Hoo!! Happy Dance!!!

Pause to let it sink in, and give thanks for continued good health and for such a strong support team who makes a huge difference for me. Thank you!

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Spoiler Alert

I watched the Superbowl last night and I loved it! We’re not much of a sports watching family, but last night we watched (much of it) together and ate our dinner in the living room in front of the TV which NEVER happens!

To be honest, there are aspects related to the Superbowl which I find troubling, but yesterday I simply enjoyed watching the game! I couldn’t tear myself away! It brought me joy and a renewed spring in my step!

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Amazing individual pizza which my superstar boys made from scratch last night: fantastico!

The game was so exciting! I wasn’t sure who I was going to cheer for before the game started. But that quickly changed! As I watched the Philadelphia Eagles working hard together, I realized I was actually cheering out loud for them. What a great game! So much determination, focus, drive! And those creative plays!

You probably know the result: the unthinkable happened. The underdogs won! They beat the team that always seems to win, the QB who was poised to break his own record. What seemed impossible actually occurred! The Philadelphia Eagles won Superbowl 52!

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This reminds me of something my friend Chris Draft told me. Chris is a former NFL linebacker who inspires, encourages and supports countless lung cancer patients like me. One of the ways he does this is by using the platform he earned from his years in the NFL to get lung cancer patients in football stadiums -even the Superbowl– to raise awareness and change the face of lung cancer.

Chris said football is a great image for lung cancer patients, because anything can happen! We may think we know how things are going to go, but the game can change in an instant!  Anyone can win! We saw that yesterday, and this sparks hope!

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Several nights ago, I had a dream. It was set way in the future, in the lead up to Superbowl 102. Washington would be playing LA, and the American President (of some 50 years from now) announced his plan to conquer cancer. There were two options, one for each team, and whichever team won, that was the plan they would implement. I have some wild dreams!

Lung Cancer may seem impossible to cure, but with hard work, determination, teamwork and creativity, we can do it! We can cure lung cancer. I don’t want to wait 50 years, though, and neither do you!

One in thirteen Canadians will be diagnosed with Lung Cancer, and we don’t have time to wait!

Right now is an exciting time in Lung Cancer research! What seemed impossible is almost within reach. Who will step up?

Who will be our Lung Cancer Champions?

It feels like a miracle I’m still alive and able to enjoy the Superbowl more than four years after my diagnosis! I’m stepping up, and hoping for many more!

Come with me!

Finally, an update!

Being a cancer patient is not for the faint of heart! I’m just home from another routine CT scan. I get them every three months. The scans may be routine, but my reactions are not! Sometimes I feel stressed. Sometimes I’m relaxed. Often I’m in a pretty good mood and have enjoyable conversations with people I encounter at the hospital.

This time, I felt unusual stress in the lead-up. I don’t know why and I don’t think there has to be a reason. It’s very common for cancer patients to face “scanxiety”.

Maybe I’ve been thinking too much about this time last year: I was feeling great, went for my CT scan and was blindsided by the results which led to a change of meds. The new meds seem to be working well, and have far fewer side effects. I have no reason to suspect there will be bad news from this scan.

But still the lingering stress trudged through every day. I prayed and asked my Bible study group to pray too. That made a real difference, but even so I occasionally noted the undercurrent of stress ready to ripple through my (mostly) peaceful heart.

In the hours leading up to my scan I felt fine. Joyous even. On my way into the hospital I was thinking of a friend – a lovely person who works at the hospital and just got a big promotion. I was hoping for the opportunity to congratulate her in person, and prayed that I would run into her along the corridor by the coffee shop. There she was, right where I prayed I would see her, and it was wonderful to give her a hug and hearty congratulations!

I found myself praying for other folks in the waiting areas and happily chit-chatting with hospital staff. All was going well until I heard the CT machine from the next room saying, “breathe”. The strangest thing happened: a chill went up my spine and for that moment I was filled with dread about the procedure. I prayed and felt calm again, but that was a tough moment, and this scan wasn’t an easy one. The nurse couldn’t start the IV on the first go. He fished around and still couldn’t find the vein. (Ouch!) I prayed it would go better on the second arm, and it did. The technician was joking about a bunch of things and we were laughing together, but then suddenly he started talking about the changes to our city in recent years and the dramatic increase in gun violence. This is a subject close to my heart, and it’s hard to hear this as I’m lying on the machine about to have a test. There were a few other things that also made it hard to keep calm and relaxed.

But while I was waiting in the observation area afterwards, I became aware that other patients were having a much harder time than I was. The nurse had an even worse time finding a vein in the woman after me. She sounded extremely stressed. The man after her was worried about having a reaction to the dye, since that had happened to him before. CT scans are not for the faint of heart.

I’m thankful I made it through fairly well. Now I just have to wait for the results from my oncologist!

IMG_2995Thank you for standing with us! It has now been a little over four years since my diagnosis, and we give thanks that my health is so good!

There is so much I’d love to tell you about! I know there was a longer-than-usual gap between posts, and I’m sorry if you felt any anxiety about that. I was very sick and tired out through November and December and even part of January. I’m so thankful to be getting my energy back! Here are a few quick updates.

My Lung Cancer and Jelly Beans video has had over 700 views, and many of you have made donations toward lung cancer research. Thank you very much!

 

Here it is if you want to see it again: (pardon the look on my face at the beginning!)

I’ve recently done some fundraising to help me get to the LUNGevity Hope Summit this April. I just learned today that I have raised the full $1500. Thank you to all who have given! Your gifts are both encouraging and helpful!

A large group of us are raising money to fund research into the specific kind of cancer we have: ALK+. Together, our whole team has raised about $300,000. (I think!) We surpassed my own personal fundraising goal of $500., and I’m wondering if I set my goal too low. If you would like to make a contribution towards research into my specific kind of cancer, you can still give here: Jill’s ALK+ Lung Cancer Research Fundraiser. (This is to an American charity, so receipts will only help those who pay US taxes.)

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Our pilot project for the Ottawa Lung Cancer Support Group is completed. It has been a tremendous success! This group of women connected well and we have really enjoyed spending time together. In fact, I invited them over to my home last week! Our leader is a real gift to us, and her skills and experience make a significant difference in the quality of the group. We have shared some ideas and soon the decision will be made about how to move forward to support more lung cancer patients. We are very grateful for the generous support of Lung Cancer Canada and The Ottawa Regional Cancer Foundation. If you know someone diagnosed with lung cancer in the Ottawa area, and you’d like to learn more, please be in touch – either with Lung Cancer Canada or with me.

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One in thirteen Canadians will be diagnosed with Lung Cancer

I’ve participated in a few other (lung cancer) events and there are a couple of more in the pipeline. I’ll try to keep you updated better in months to come!

Thank you again for standing with us. We can’t tell you what a difference that makes!