2017: Grief and Hope

We’re grieving some disappointing news we received a couple of weeks ago.

My CT scan in January showed cancer. Ugh. This means the med I was on for almost two years is no longer working effectively.

Thankfully, this is not the end of the line: many new meds are being developed, and there were a couple of options for me to consider. The best option, we think, is a new drug which is only very recently available to certain cancer patients here in Canada. Good news that I fit the criteria. Good news that the timing worked out for me. Good news that the company agreed to release it to me on compassionate grounds. Good news that we don’t have to pay for it.

Yet, in the midst of all this good news … still the grief.

Naturally we hoped I’d have a longer run on Ceritinib. I had even started hoping that “cancer” would become a thing of the past, that we would turn the page and start a new chapter which didn’t include cancer. That in future there would be chapters which didn’t include daily meds, side effects, frequent appointments and tests. Maybe even one day cancer would be beaten! That day will come, but I don’t yet see signs of its coming.

The reality is that we don’t know the whole story. We can’t see the BIG picture. We have no idea what the future holds.

Thankfully I got the tests I needed quickly. Thankfully my oncologist worked late to fill out forms requesting the new drug for me. Mercifully it came surprisingly quickly. Thankfully I’ve been taking it for a week now and things seem to be going fairly well.

In the midst of disappointment, I keep praying to have my eyes and ears open. I keep looking for reasons to give thanks. I keep trying to discipline myself to stay in the present and live each day faithfully.

It’s hard to write this update. I don’t want to have to share bad news. I know you don’t want to hear it. I was blindsided by this news, and it hit hard. Surprisingly hard.  I’m still working through the grief. I started this post a few days ago, and I don’t even want to read it over to check my spelling & grammar. So I’m not going to! (I’m such a rebel!)

In the midst of this difficult news, there is good. There is hope.

Hope is the theme I’m focussing on for 2017. I chose it toward the end of 2016, and had no idea how much I would need it! One of the ways I am focussing on “Hope” is by regularly reading passages from the Bible which speak to this topic, and spending time reflecting and praying about them.

I recently read 1 Kings 19, which tells about the time the prophet Elijah was exhausted and fearful since his life was in danger, and he met with the LORD God. The LORD asked him twice, “What are you doing here, Elijah?” It’s a beautiful encounter in which the powerful God whispers to Elijah. Elijah learns that the story is bigger than what he perceives, and that the LORD has a good plan which includes Elijah. It reminded me that the Living God knows my name and all about my situation. Here is a prayer I wrote in in response:

Lord, thank you that we can come to you with the whole story, as we know it. You invite us to speak, to tell it to you. You listen and care for us. You are powerful & show your power … and you are gentle & show your gentleness.

You are more powerful than our enemies. You know our name. You know our need. You tenderly care for us. You give us a role to play in your Great story. You gently open our eyes and ears to know that the story as we know it is not actually the whole story. Thank you.

(If you’re interested in reading this passage, you can find it here: http://bible.oremus.org. Search 1 Kings 19)

Cancer is not the whole story. Leaving the clinical trial and switching from Ceritinib to Alectinib right now is not necessarily all bad. There may be good in it that I can’t perceive. Certainly the side effects so far seem much easier to tolerate, and for that I am thankful!

I’m praying for courage to boldly step into God’s Great story.

Prayers, warm thoughts, and words of encouragement are always appreciated.

Here are some glimpses of love, light and goodness from the past couple of weeks:

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The hibiscus plant is blooming again (and again)!

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I managed to root jasmine and geranium last Fall, and they’re starting to bloom!

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My first lemons are looking luscious!

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Homemade heart-shaped biscuits with our broccoli soup last night!

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I set foot on the world’s longest skating rink (wearing a cozy hat made by the sister of one of my favourite clinical trial nurses)!

 

In Ontario, cancer medications given in hospital (like IV chemotherapy) are provided free of charge, however cancer drugs that we take at home (like effective new pills) are often paid for by the patient. Sometimes they cost thousands of dollars per month. Many cancer patients face significant financial fragility, and should not have to pay for their treatment medication. The Canadian Cancer Society is making it easy to speak out against this unfair situation. If you are an Ontario resident, please consider taking action! Click here to contact your MPP about this important issue!

 

As 2017 quickly approaches…

I want to take just a few moments to thank you for your support, prayers, and encouragement.

Hard to believe it’s over three years since my diagnosis, and we are so very thankful that I’m still alive! In fact, my health is better in recent months than it has been since before my diagnosis. We rejoice!

But my health is nowhere near what it was like before cancer, and this can be hard. The support of friends and family helps keep me going, helps me stay encouraged and hopeful! Thank you!

There have been so many beautiful moments this past year, and this is what I try to focus on, rather than the discouraging parts.

Thank you for standing with us, and for helping us to have hope!

May you know much joy, love, health and hope throughout 2017!

PS: It’s not too late if you’d like to make a donation in support of Lung Cancer research … you have until midnight January 1st to help us win a trip to the Superbowl! 🙂

Click here to donate: Hamer-Wilson Hope Team

There are many good causes, and many good opportunities to donate! Thank you for considering this one!

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# Hope Unites

A whirlwind trip and a great opportunity to meet patients, caregivers, advocates, donors, doctors, and many others at Lung Cancer Canada’s Toronto events last month! I’m so grateful that I was able to participate in their fundraiser and first ever Canadian Lung Cancer Patient Summit. I’m very impressed with the good work that Lung Cancer Canada is doing!

The “Evening of Hope”, the Thursday evening fundraiser, was a fun night where I met a variety of interesting people. Woven through the laughter and tears was much hope and joy, and deep appreciation for the people and work of Lung Cancer Canada. I felt very blessed!

If you look below, you’ll get an idea of what kind of day the Patient Summit was on Friday. It was, in its own very small kind of way, a marathon of hope! So many excellent presentations about innovative and exciting advances in the treatment of lung cancer! A lot of good info about how to access and pay for new treatments too!

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During lunch, we were honoured to hear from Darrell Fox, Terry Fox’s younger brother. The Terry Fox Foundation has raised over $700 million for cancer research worldwide! We are so grateful for Terry Fox, his family and legacy! What a treat to hear Darrell speak – humbly and powerfully – and then talk more with him later in the afternoon. I am grateful for his encouragement!

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There was a beautiful atmosphere of encouragement and sharing at the event, and I appreciated the opportunities to listen to and learn from a variety of people. Many patients have to travel for treatment, and that can be very costly. I heard one oncologist offer a spare room to a patient. Such kindness!

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I got to meet Chris Draft, a former NFL linebacker who founded the Chris Draft Family Foundation and serves as a huge advocate on our behalf. You can watch a video he made by clicking: Team Draft – What is the Biggest Cancer Killer? (Spoiler alert: the answer is Lung Cancer) What an encouraging and inspiring person!

 

Probably my highlight of the two days was to meet this group of special women, listen to their stories, and receive their support and encouragement.

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These lung cancer patients / caregivers travelled from the West Coast, the East Coast, and places in between to gather at the Patient Summit. What a gift to connect! Lung cancer isolates. # Hope Unites!

And there is reason for hope!

But there are also a lot of grim statistics. Lung Cancer Canada recently released their 2016 Report, which you can read here: Faces of Lung Cancer Report 2016, if you’re feeling brave.img_7968

There’s a picture of me & my kids in the report.

Last month was Lung Cancer Awareness Month, and I learned a bit about advocacy and Twitter through trying to tweet some Lung Cancer facts. I’m @JillHW on Twitter, and you are welcome to follow, though I can’t promise how much I’ll be there in the coming months!

Lung Cancer causes 27% of cancer deaths, yet receives only 1% of personal donations.  

I’ve entered Team Draft’s Superbowl Challenge fundraiser, and I would be honoured if you’d consider supporting us by clicking on Hamer-Wilson Hope Team.

I came home from Toronto exhausted and energized! I came home inspired to serve as an advocate for Lung Cancer Patients and our families. I hope I will get many opportunities for many, many years!

Hope is powerful!

 

 

 

 

 

 

 

 

 

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.

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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!

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“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!

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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!

 

 

 

CT-Scan update

I’m writing to let you know that I’m still alive after my scan yesterday afternoon! 😉

Seriously, there wasn’t much doubt in my mind that I’d make it through fine, even if I experienced an unlikely allergic reaction … but I did pray a lot, and I made sure to tell all the medical folks there that I wasn’t pre-medicated so they’d be prepared to deal with any reaction that might occur.

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I had a rough morning yesterday: an unusual amount of nausea. I have pills that I can take for nausea, but I don’t unless I really need them. Thankfully the nausea passed around lunchtime.

It seems like every time I have a scan, there’s a slightly different procedure before the event. There is awful tasting liquid that we usually have to drink before a scan. I assume it serves a purpose, but I don’t know exactly what it is. 🙂 It makes for a good conversation starter in the waiting room, though, since everyone likes to comment on how terrible the drink tastes. The amount I’m told to drink varies from scan to scan. Usually it’s two cups worth, sometimes about a cup. Once I think I didn’t need any at all, and a couple of times it’s been a quick few sips on the table right before the procedure.

I was rather excited because the info they’d sent informed me that it was only a short drink on the table this time. Yay! When I was brought into the room, the technician and I had a nice little chat. She and I share the same birthdate, and apparently several people who work there have birthdays that week. If you’re ever craving cake mid-June, I can tell you a place where you’re likely to find some! 🙂 Naturally I told her I wasn’t pre-medicated (in case I had a reaction during the test). I lay down, raised my arms over my head, gave thanks that my shoulder has improved so much that I didn’t feel much pain doing that, and prepared for the test.

The technician left the room and the scan was about to start. Suddenly I remembered the drink, and started waving my arm (that wasn’t attached to the IV) and calling her name. Thankfully she heard me and came to ask why I wanted her. She re-checked the notes, and while one scan called for no drink, the second I was having called for a short drink on the table. So, she detached my IV, pulled the table out of the “doughnut” part of the machine so I could sit up and drink a few sips. It didn’t taste all that bad. I lay down and got hooked up again. I gave thanks that I remembered the drink so the scan would clearly show what it’s meant to show, and asked once again for protection from allergic reactions. I breathed deeply and the scan was over in a few minutes without incident. I gave thanks again!

Off to the waiting room, where they kept me for a good half hour to make sure I didn’t react. I felt very well cared for, and I am so grateful to live in a place where I get good medical care from people who generally treat me with kindness.

It looks like I won’t need to pre-medicate with prednisone prior to CT-Scans any more. Since this time was free from any reaction, we conclude that my little reaction many months ago was likely from the adhesive on the bandage covering my IV, and unrelated to the contrast dye they insert. I’m very thankful, because I prefer to avoid unnecessary medications.

I was tired after the procedure, though! I came home and spent some time with my kids. I cooked dinner, ate, then snuggled up on the couch to watch a bit of netflix with my daughter. I slept for an hour and a half, then got ready for bed and had a good, long sleep. I slept for about 13 hours all totalled last night, and I’m feeling much better this morning.

God is good!

Thankful for Little Things

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!