Waiting

An Act of Defiance

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Three years ago I committed an act of rebellion way beyond anything I had done in my teens.

I didn’t do it alone: I recruited my family in this ridiculously defiant act.

I was diagnosed with lung cancer in December 2013. At that time, there were two treatment options for my particular kind of lung cancer: IV chemo and a new targeted therapy (pills) called Crizotinib. I underwent IV chemotherapy and then I took the brand new targeted therapy, but one and a half years after my diagnosis, I had run out of options. In May 2015, the cancer was growing and there were no more approved treatments.

Thankfully, my oncologist did his research and learned there was a clinical trial that I might qualify for. This clinical trial was for another new targeted therapy called Ceritinib. I underwent lots of testing to find out if I would be allowed to join.

My friends prayed as I went through the process. We had no idea if I would qualify, nor which arm of the trial would be the best one for me. I was approved and randomly chosen for the group that we now know is now best practice for this drug. All over the world now, people take Ceritinib with a low calorie, low fat breakfast, exactly as I did throughout that clinical trial.

I kept taking Ceritinib as long as it worked: almost two years! The side effects were difficult but bearable. That clinical trial extended my life – not just for those two years, but it also carried me through long enough for new treatment options to be available. Now I’m on a third targeted therapy, and it has been working well for a year and a half. We give thanks!

But three years ago, I had just started this clinical trial and I had all kinds of side effects. They tend to be worse the first few weeks of a new treatment, and I was also dealing with side effects from recently stopping the previous treatment. It was a very difficult season, I was in excruciating pain, and we had no idea if the clinical trial would work.

So in the midst of all the uncertainty and pain and grief, I decided to take a drastic step.

It had to do with an apple tree. I’m a bit of a gardener (not so much in recent years). For years, I thought about planting an apple tree but never did because it takes a few years to bear fruit, and I preferred plants that would give more immediate results. I did not want to wait for an apple tree to mature enough to bear fruit.

Three years ago, I chose to incite rebellion. I chose defiance.

Shortly after I started that clinical trial, my birthday was approaching. For my birthday I told my family the only present I wanted was for them to give me an apple tree and plant it in our back yard. A special tree, with branches of different kinds of apple trees grafted on so that we could have a variety of apples to enjoy. A tree of hope.

Hope is an act of defiance.

I started a rebellion and provoked defiant hope.

And it paid off: as I celebrate my birthday three years later, that tree is fruiting in a spectacular manner!

Three years later, more treatments are approved and available, and many more are in the pipeline for my kind of lung cancer and for other kinds too.

Three years later, there are baskets full of hope that were empty before.

There’s still a long way to go, though. I’m grateful that I’m here and I have a voice to speak up for lung cancer patients and all cancer patients.

This kind of defiant hope compels me as I seek to improve outcomes for lung cancer patients. I have so much to learn! I want to strategically invest my limited energy! Lung cancer has been neglected for too many years, and I’m looking for ways to change this.

It takes hope to plant a seed. It seems ridiculous that a small dead-looking seed will come to anything, but we know it can. We’ve seen it time and again: we eat food every day.

I’m planting my seed! I hope my small efforts will make a big difference for many of us.

Hope gathers us. Hope unites us. Hope holds us.

Hope is an act of defiance. Come join the rebellion!

Finally, an update!

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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!

 

 

New Chemo and Side Effects

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I started new chemo meds on Monday, and lots of people are asking how it’s going. It’s hard to know so soon: my nurse said it would take about a week to know how it’s working. This has been a tough week for me since I think I ate something bad over the week-end, and I’ve had an upset tummy for most of the week. I’m tired from being off the steroids as well, and have spent most of the week in bed. I don’t know how much the new meds may be contributing.

Last night I experienced some exciting drama in the form of strange visual effects. I saw flashes of light, and all kinds of unexpected things in my peripheral vision. I don’t know how to describe them, except to say they remind me of watching tv in the “olden days”, when ghost images would appear beside the actual image when the reception was poor. (Really frustrating when watching hockey: which guy is going for which puck?!) It was a bit like that, with repeated images swirling around the edges. Pretty wild!

The pages of information from the pharmacist indicate that these kinds of vision changes are a serious side effect from this medication, and urge the patient to tell their doctor straight away. I called my oncologist’s nurse this morning to ask about this, and she was unaware of this side effect. There are no doctors that she can ask until Monday. She said since it only happened once that I should continue with the meds. I’m thankful I’ve got an appointment with my oncologist on Monday.

Apart from the exciting light show last night, I seem to be experiencing only a few side effects. I had some horrible headaches earlier in the week (also a side effect), but they seem to be gone now. I’ve got a strange taste in my mouth and a bit of nausea, but it’s not too bad.

I don’t know how the new meds are affecting the cancer. I think I may be coughing a bit less, but I’m not sure. I’m definitely still coughing.

Many of the side effects from my first chemo continue, but it’s possible they’re improving. I still seem to bruise easily, but didn’t get a bruise from my blood test on Monday. My hands and feet continue to be numb / have strange feelings, but occasionally – perhaps increasingly – they feel more normal.

One thing I’ve been reflecting on lately is the idea of waiting. It’s relatively easy to wait for a short amount of time, but it grows increasingly difficult, especially when pain is involved. When I was labouring with my first-born, I was expecting it to take 24 hours or more. I wanted to deliver him without any pain meds, but shortly before he was born I asked my nurse what pain meds I could use. She said, “You’re doing so well!” … and then came another contraction and I forgot about the possibility of pain meds. Jono was with me, holidng my hand and getting me ice chips. Their encouragement made all the difference to me. Their encouragement kept me going when I felt that the pain was too much and the path was too hard. Even so, I’m glad my boy came quickly (about eight hours, if I remember correctly!) because labour is hard work!

Here is a quote which captured my imagination some twenty+ years ago. It’s by S.D.Gordon, from his book Quiet Talks on Prayer.

Waiting

It means steadfastness, that is holding on;

patience, that is holding back;

expectancy, that is holding the face up to see;

obedience, that is holding one’s self in readiness to go or do;

it means listening, that is holding quiet and still so as to hear.

What do you think of this? What do you think it means? How does it ring true (or not) to you? Is it capturing your imagination? Does it apply to your life now? How would you describe/define waiting? What makes waiting easier / harder for you?

I’m feeling much joy these days, and I’m so thankful for my family and friends and gardens and birds and the beauty in this world. I’m hoping I’ll be able to get out for walks again sometime soon.

Thank you for your encouraging words, faithful prayers and support. You have no idea the difference you make.