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:
The hibiscus plant is blooming again (and again)!
I managed to root jasmine and geranium last Fall, and they’re starting to bloom!
My first lemons are looking luscious!
Homemade heart-shaped biscuits with our broccoli soup last night!
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!
Through the Valley 
Well, you’re wrong about one thing…I want to hear ALL the news, not just the good stuff. I’m not the person who only wants the sunshine and roses. I want the reality. And the other reality is, you are amazing!
oh Jill… We pray for all of you. Lord have mercy.
Love from Hamilton. Simone + Peter
Love you Jill! Cora and I are praying for you.
Dearest Jill –
I’m so sorry to hear about your news. I’m so sorry … (Bruce is so upset for you/with you. He is so sad that you are faced with this news. We have heard similar news one too many times when we’d hoped we had finally made it into the clear… May experience God drawing to you tonight and give you peace as you rest … )
(BUT!!! don’t apologize to anyone one reading your post – about receiving your news.) It is such an encouraging post. Your thankfulness in the midst of what is – is humbling. Jill with you – with you, I will pray that the best thing for your diagnosis – your best attack plan – is for you to be on this new drug that you mentioned. If there’s any way Bruce and I can help or support you, please let us know. (I don’t always know exactly what to do to help – or how to care in a way that is most meaningful to you, but if there is something, Jill – please let us know.)
Tonight – I’ll be praying for you. And thankful for your vulnerable heart, open to bless others. ❤
On Tue, Feb 7, 2017 at 6:36 PM, Through the Valley wrote:
> Jill posted: “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 me” >
Hi Jill
What courage it took for you to write this. We are so sorry to hear that cancer has reared its ugly hard again. I know we cannot even imagine how deeply this had hit you but I am in awe of the love and strength you are sharing with all that is good and beautiful in your life. You make me think always and give me the reality check I need to get the negative out of my days and feel and appreciate what blessings I have. Thank you. Love to you. We are over here in Markham but if there is anything we can help with please let us know.
Jill, I am so sorry to hear this news. I am thinking and praying for you. Love to you and your family. xox
Sorry to read this news. i hope the new drug works well without adverse effects.
Hey Jill, it’s a blessing to hear your heart speak! I have so much to say in response to what you shared but for now I will only say that Jesus completely change our lives, Linda May’s and I. We are rediscover the beauty of our Lord and He is changing us inside-out! It’s almost lie I was living with cancer and was battling it with performance and and falling attempts to please God and to love Him, as if He was expecting from us to be strong and able to manage our own weaknesses and failures. We love Him now, live in victory not because of our own efforts, AT LAST!, but because we are receiving His love, His grace. Jesus is more real today then the years at Bible school and the preaching I had done.
There is hope, I hear it as you share this with us! Praying for you of course! Jesus is our Hope!
I just saw this on the FB ALKies site. I’m a Canuck too, it looks like you are in Ottawa, I’m in TO. I’m also on Lorlatinib so if you need any information or advice, just let me know. I also have a blog. http://www.thesearemyscars.com
Be well,
Anne Marie
Hard news for you and your family. Thank you for sharing. Thank you for telling your story and how faithful God is in the midst of discouragement. Thinking of you and praying for success with this treatment.
Oh Jill. News = hard; spelling and grammar = fine; God = in control and loves you!
Love and prayers from the Rays
I just wanted to let you know that we are thinking of you and praying for you. 😊 You are stronger then you know
my dad in china, diagnosed stage four lung cancer, last Jan as well, had been on the targerted medication ,for a year now…gratefully, the oral drug is.still working…i know how u.feel as our family is.going through the same….god blesses u and your family
Can’t imagine how difficult this must be. Grateful that God took you to the Elijah story – I marvel at His ability to speak into our lives and be everything that we need as we go THROUGH these things! Love from Hank and Cathy
Love and prayers from Malawi!
Praying with you, Jill. Thank you for reminding us of our God of Hope. I trust God has the big picture and I pray for wisdom and guidance. I’ve been thinking of you very often lately. You are a blessing. Keep your eyes on Jesus. Much love.
Nadia
No words, but much love going out to you and the family. XX
Hi Jill,
Just wanted to say how sorry I was to hear this news. As usual you have such a positive outlook I know it will serve you well. I’m glad to hear about the new drug and wish you the best.
If there is ANYTHING you or the family need, please don’t hesitate to ask.
Thanks! K
Sent from my iPhone
>
Dear Jill,
Thank you so much for the up-date. I will certainly be praying daily for you, your family and that the new drug will help more than expected. God bless you and may you feel his presence even things are tough.
With love, Emily B >
I read this I’m tearing up cancer took my husband sandy last june so raw I feel for you Jill it’s a horrible disease I’m praying for you ,for sure devastating news …so hard to go through your hopes are up and then you get news of this ,glad though the Lord has been good to you that there is other meds praying they work His Will be done .Your a strong woman your courage is amazing keep up the fight don’t give up .You are surrounded near and far by ppl who love and care for you and will keep praying.
Oh Jill, you are strong in the Lord, and in His Mighty power. 🙏🏼👏🏼🙌🏻 Just where He likes you/ us to be. Well done! You recent news is disappointing. I’m sorry you got it, then had to write it, but happy that you trusted us, your friends to read, feel sad, and pray. 🙏🏼Good for you!!! I LOVE that photo of you on the canal,⛸ 👏🏼and I like your plant photos very much too. T. sang “Lemon Tree” to me when we were dating so I’m excited for you about the pretty lemon you are growing! 🍋 So as not to leave on a ‘sour’ 🎶, I just heard from another friend (who also received disappointing cancer news) that her husband’s grandma was told the same bad news then lived to 84! I’m praying you see 84 or more!!
Thinking of you Jill, walk on with courage and hope and thankfulness as you’ve been doing. As you say he knows you by name and he’s provided this new drug, all praise to him for his care for you. Upholding you in my prayers. May the grief of this shock result lessen and may comfort and hope shine like a beacon to give you joy and courage and healing. Upholding you all in prayer. God bless, Merri
You and your family are in my thoughts. This is bad news but if you face the days with the courage and optimism that comes through in your writing, I am sure there will be many more posts to be read here. I wish you strength and offer you love and support.