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.)

IMG_2994

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.

Version 2

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!

 

 

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:

img_8804

img_8853

The hibiscus plant is blooming again (and again)!

img_8872

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

img_8886

My first lemons are looking luscious!

img_8879

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

img_8841

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!

 

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!

 

Fundraiser: an inside look

They say the vast majority of people are so afraid of public speaking that they would rather die than give a speech. I’m certainly not in that category! Yesterday I spoke about clinical trials at the Ottawa Regional Cancer Foundation’s fundraising breakfast, and had a great time doing it!

I was privileged to be able to share my story and to thank some of the people who help make a difference for cancer patients, their families, friends and broader communities through clinical trial funding.

This was an extremely well-organized event, with loads of people working hard both upfront and behind the scenes.

I don’t know the exact numbers, but there were about 50 tables of 8, each with a table host and an “expert” (e.g. oncologist, cancer coach, etc.). Our table expert was a cancer fitness instructor, and I would have loved to have had more time to pick his brain! 🙂

I am very grateful for the many people who invested so much time and energy into making this event a success. There is a great commitment to excellent cancer care in the Ottawa region!

IMG_4040

Even with a crowd of 400 or so, I didn’t really feel nervous. I felt moments of nervousness, but I prayed and breathed and felt peaceful and calm. I felt like I was meant to be there and really excited for the opportunity! I give thanks to the Lord for this good gift of confidence and peace!

Just as the breakfast was about to start, one of the Cancer Foundation people asked me if I’d do an interview for a local radio station right then, so I ducked out and missed the opening few minutes of the breakfast. Again, I felt completely calm and glad to do it! I haven’t heard the story yet – don’t even know if it has aired.

The breakfast was so well organized that I knew well in advance exactly when it would be my turn to speak. They confirmed it with me again before the breakfast yesterday morning, but there was also someone who came to my table at the right time, to get me and practically escort me right onto the stage! No backing out! haha 🙂 Seriously, I felt very well-cared for by the team in the lead-up to the event, during it, and afterwards. Very encouraging!

The mayor served as MC, and did a great job! He helped me to relax in the moments before I spoke, while they showed a video much like the one which had been on the news last month. He quietly asked about my kids, where I live, people we know in common, etc. For a very brief moment I considered mentioning to him that the sidewalks on our street are in terrible shape and could really use his attention (I’ve been emailing our Councillor about that lately!), but instead I chose to focus on why we were there! 😉

My speech was only 5 minutes long. So much more I wish I could have said, but these are busy people who need to get to work. I honoured the 4 – 6 minute range they gave me.

I spoke about the strong community of support we have, and the generosity lavishly poured out on our family. I specifically mentioned the prayers, encouragement and the food!

I mentioned that the Lord has made a huge difference for me. Afterwards a woman I didn’t know approached and kept thanking me for speaking and saying, “Praise God!” I’m assuming she was a Christian: it was encouraging to hear from her and shake her hand!

It was good to connect with people who introduced themselves to me afterwards. It’s a small world, and I spoke with a few folks I knew or who knew who I was. I am so thankful for the two friends who came with me, and the team of dear people who weren’t there, but encouraged me and prayed for me. I carried this support with me, and felt carried by it.

Here’s an excerpt from my speech, the end bit:

Every day is a gift! I don’t know how many more I’ll have, but I want to make the most of each one.

I’m thankful that research continues to develop new and better treatments that I hope will help extend my life for many years. I want to celebrate many more birthdays with family and friends, and I’d love to see my kids grow up and even my grandchildren. Clinical trials are helping me to have hope!

Your generosity in supporting clinical trials is making a significant difference for cancer patients, their family, friends and communities. Thank you for standing with us, as members of our support team.

I dream that one day soon the treatment for cancer will be 3 months of a daily pill, and then you’re done. That’s a dream worth working towards, and we get to play a part in that!  Thank you for the part that you are playing.

(Where do you think I teared up? If you guessed when I mentioned my kids, you’d be right!)

The feedback I heard the most afterwards was that people were inspired, and that I spoke clearly and powerfully …

… but what really excites me is that the Foundation raised over $215,000 at the breakfast yesterday morning! What generosity! I hope it makes an even bigger difference!

I’m thankful that I could play my small part!

I count you all of you, dear readers, as members of our support team, and I thank you!

The Ottawa Regional Cancer Foundation helps fund local clinical trials and offers cancer coaching to anyone who has been affected by cancer, including family members and friends.  http://www.ottawacancer.ca

If you’d like to donate to the Cancer Foundation, consider supporting my husband Jono’s fundraising efforts as he runs the marathon next week-end in support of the Foundation.  http://ottawacancer.kintera.org/ottawaraceweekend/jono   (No pressure!)

Now I’m off to run some errands and enjoy this beautiful Spring day!

IMG_3946.jpg

IMG_3965

 

Thick Files

Lately quite a few medical folk are commenting how thick my file is. My first reaction is sadness: I’ve had so many appointments and tests that the paperwork is ridiculous. My second reaction is gratitude. I wish I’d never needed a cancer file, but now that I’ve got one I’m glad it keeps growing! While I wish we could close it down and file it away deep in the archives, the reality is that I’m still living – with cancer – but living!

Chart Thick File April 26, 2016

Part of my file: my oncology nurse leaves the rest in the office since it’s too heavy to carry!

Yesterday marks the one year anniversary since I started this clinical trial, and I’m thankful that the clinical trial nurses have run out of pages for my pharmacology file and had to make more copies to fill in my chart. I am currently in cycle 18 and my latest scans are still good. Praise God!

I am thankful for these pills I take every morning.

IMG_3727

I’m thankful that although I suffer side effects, they are manageable and the pills are effective. Many people can’t tolerate the side effects and have to discontinue this drug. I’m thankful that my numbers are good.

IMG_3718

blood pressure, pulse, blood oxygen%, temperature

I’m thankful that I don’t have to travel long distances for good medical care. (Some cancer patients travel hundreds of km, or even to a different continent for treatment.) I’m thankful to receive cancer medication free of charge – a benefit I receive from being on the clinical trial.

I’m thankful for Spring and the explosion of vibrantly colourful beauty! (Way too many photographs to post here!)

I’m thankful to have celebrated our 20th wedding anniversary last week, and for the friends who brought and ate yummy dessert with us.

IMG_3609

I’m thankful for field trips, music recitals, school bake sale fundraisers, and so many more moments that I get to share with family and friends … even ones that may seem mundane. I’m ridiculously thankful that I was able to bake four cakes for my kids’ school fundraisers this past month, and volunteer for a few different things. I keep praying for wisdom and trying to stretch myself further while asking the Lord for “daily bread”: everything I need for each day. He gives generously, pouring an abundance of grace over our lives.

IMG_3723IMG_3288

I’m speaking at the fundraiser for clinical trials next week – can’t believe it’s next week – and very grateful for the difference that generosity can make!

While I would love to be completely healed of this disease, in the meantime I am very thankful that my medical file keeps getting thicker!

Connecting

We were made for community, for connecting. The people in our community have made a huge difference for us, and not just through the challenges of the past couple of years. We all need people who love us, who are for us, who will help and support us … and to really flourish, we need to love and support others as well!

I’m no longer regularly relying on the generosity of others to help cook meals for our family. Most days I enjoy the opportunity to create something nutritious and delicious! We’ve been eating lots of soups and curries lately! We share great conversation and laughter around the table, and also in the preparation time. My 12yo especially loves to cook with me, and that is one of the great joys of my life! Anytime I get to hang out with my kids, teach them, listen to them, learn with them, laugh, read and pray with them … is a good gift!

The cold weather keeps me inside sometimes, since it can be hard to breathe, but I still get out a bit.

IMG_2264

IMG_2303

9yo creating a snow sculpture with a friend 

IMG_2230

IMG_2397

Night skating on our backyard rink

 

I continue to wonder what the terrain will be like on the other side of this valley. I am not the same person I used to be, and I’m trying to figure out what my strengths are now, and what I have to offer. Cancer slammed some doors shut on me, but it can’t shut them all, nor can it keep them all closed. I’m glad I’m not travelling this journey alone.

A weekly highlight is our “Women of the Word” group which has been together for six years. We study Scripture, share our lives and pray together. Not only have I learned loads as we’ve journeyed (at a snail’s pace) through Luke, Acts, Micah, 1 & 2 Thessalonians, and Galatians (as well as a number of other passages), but I’ve received more than I could imagine as our hearts have been knit together in love and trust. These women are tremendous, and I am blessed beyond words that we are part of each others’ lives. We could write a book about our experiences together, and another one about the prayers we’ve seen answered.

This past September I started a Bible study for my boys and a couple of their friends. We call it bob sos. I can’t remember exactly what that stands for, but it’s something about the Bible and ice cream sundaes. This group can be challenging: these youth do not have much experience participating in group discussions and I sometimes feel like I’m herding cats! I love it though! These youth ask amazing questions – some of the best I’ve ever heard – and their faces light up many times during each study. What a gift that I get to participate with them and my encouraging co-leader!  My 14yo said, “bob sos is really fun: we get to talk about the Bible with our friends and eat sundaes!” I guess that sums it up!

I continue to live a much more isolated life than I ever had previously. This can be hard for me, social extrovert that I am, but I don’t have the energy to spend as much time with people as I used to. I have been given more opportunities to pray for people, and to grow in learning to pray. This is a privilege, and a responsibility. It is also very encouraging to see prayer answered!

My voice continues to improve … but a long way to go still. Recently I was helping to lead singing at a local church where we know quite a few people, and many came over to tell me they are praying for me. How encouraging! I am so grateful!

Who are “your people”?  In what ways do you live interconnected lives? How intentional are you about growing deeper in community? Who are the people who encourage you, who speak truth in love and help you to grow? How are you encouraging, speaking truth in love and helping others to grow?

Have you tried connecting with God in prayer? How has it been going? Luke 11 tells us that Jesus’ followers asked him to teach them to pray. And he did. Years ago, I read “With Christ in the School of Prayer”. I’m grateful to still be a learner in that good school! Prayer is talking with God. There’s no magic formula, no special language or invitation needed. We are all welcome! Praise God!

It’s not all super-nutritious around here: above is proof of that! Some of this month’s treats are pictured, including happy hot chocolate! (Do you see the smiley face the marshmallows and spoon make in the mug?) We enjoyed crepes with yogurt and fruit for dinner tonight. Happy leap year day!

 

 

Sweet Springs

IMG_1812

Dear Friends,

It’s nearing the end of January and I’m noticing a pattern. When I started this blog two years ago, my goal was to post at least once per calendar month. So far so good. But lately I’m pleased to report that there isn’t much to say on the health front. Refreshingly dull, really! So dull, in fact, that my oncologist almost forgot to tell me that my latest CT scan again showed “No Evidence of Disease”!

If I reflect for a moment, I’m sure I can cobble together a few more updates for you from this month …

My physiotherapist graduated me from appointments for my shoulder. I continue to do daily exercises and see small improvements from week to week. She thinks I should be better in another four to six months.

I keep taking the daily meds, continue to go to many appointments and have regular tests as part of the clinical trial. One week out of three is pretty full of this activity, and it still really tires me out.

My energy level continues to gradually increase, as does my desire to make plans for the future and my hope to one day be able to work again.

I continue to have side effects. But here’s some exciting news: a couple of weeks ago a member of my Bible study began a comment with, “Now that you’re feeling better …”. I had to clarify that while I’m feeling somewhat better, I’m actually still suffering from a lot of nausea and other things that I then described to my Bible study group. A week later I told them I was feeling remarkably better: Significant improvements in those areas I mentioned! “It’s good to know specific things to pray for,” replied a Bible study member. Just as I suspected, they have been praying for me!  I give thanks, and it spurs on my own prayer life!

I am grateful beyond words for those who pray for me. Some of you I see regularly. Many of you I don’t even know. Thank you. You continue to make an immeasurable difference for me and our family. I’m sorry if I should have been more forthcoming about some of the difficulties I’ve faced. I don’t like to complain, but I also haven’t meant to be dishonest. It’s better for me to try to focus on the improvements, no matter how small, rather than getting bogged down in the mire of the many struggles I face daily.

Thank you for the words of encouragement that continue to buoy me. Thank you for the gifts which serve as a reminder of so much good. Thank you for the many kindnesses which have helped our family soldier on through what has been a sad and scary time.

We’re not all the way through the valley yet, but lately I’ve been reflecting and realizing that there is much value in this valley. We often yearn for those exhilarating mountain-top experiences, but rivers flow in valleys, and I’ve been privileged to drink deeply from  sweet springs. I’ve been surprised by joy and hope and love and grace and mercy in this valley … and we journey on.

May you drink deeply from the sweetest of springs,

Jill