Replenish

We all go through seasons when we need extra replenishing, and this is one of those seasons for me and many people I know. Whether it’s physical, emotional or another kind of replenishing, we human beings need regular replenishment.

Sometimes something so simple as a glass of cool water can make a huge difference. Maybe we need food, and a simple snack of veggies and protein can do a world of good. For most of my live, I’ve never been a napper, but many people find naps refreshing. In this current season of living with cancer, I nap frequently, waking up with a second wind. Rest matters, even if we don’t fully sleep.

The kids and I sometimes watch one of their favourite shows after dinner, and this can be a sleepy time of day for me. Sometimes no matter how hard I try, I can’t keep my eyes open. They watch me like hawks and call out to wake me as soon as they think I may be dozing off. Some of the time I’m just resting my eyes, but often they wake me up and rewind the show so I don’t miss anything important. How awesome are they! I’m so grateful for them.

Exercise is one of the best ways to recharge, and can really help reduce stress and cancer fatigue. As they say, it’s always wise to check with one’s care team first, and of course always listen to one’s body.

The hot days can be extra challenging, especially for those of us who don’t have air conditioning. On the difficult days I use fans and a cool, damp cloth on my forehead and/or the back of my neck can be a game changer.

It’s important to invest time in things that nourish us. This can be challenging as our various abilities shift from time to time. Several years ago, for example, I took up acrylic painting and really enjoyed it. When I started on a different med, though, my hands hurt and painting was no longer an enjoyable pastime. The treatment was definitely worth this side effect, since it was keeping me alive. It is important to be ready to make adjustments and shift to new things that fuel us.

For those who love a lot of people living with a deadly disease, it is not unexpected that we will lose people we care about. This weight of grief can be a heavy load to carry. I found a grief counsellor through Hospice Care Ottawa who listened a lot and gave good suggestions for self care. One of the best self care suggestions makes sense for everyone, not just those carrying an extra heavy weight of grief…

Make a list of things that we can do to care for ourself, and break it down by time required. A category for a few minutes, another category for up to an hour or a couple of hours, one for all day or even longer… Self reflection and experimentation is required to make the most of this opportunity. Post the list somewhere convenient for easy reference!

To get you thinking, here are just a few of the things I find nourishing right now…

Few minutes: glass of ice water, look for birds out the window, enjoy a snack, sit under the carport, listen to a song on the radio, dance, do a few exercises (stretching is so good!), cross a small job off the “to do” list, play a word game on the phone, message a friend, list things I’m thankful for …

Up to an hour or more: visit with a friend, read, reflect, journal, phone a friend, walk outside, do exercises, sit in the garden, do a medium job on the “to do” list, nap, watch a show, listen to a podcast …

What brings me most joy, peace and hope continues to be reading the Bible and praying (ever since I was 17 years old). This is how I am replenished many times each day, with thanksgiving.

What replenishes you? I encourage you to make a list and set aside portions of your days to do these things regularly. We all need regular replenishing.

Generous friends brought delicious dinner (polenta, peppers, egg and basil) and also a cute little dog for a visit this evening. Very grateful for good friends!

Living on Oxygen: tips that have helped me

A few people have asked for advice about living on oxygen, including someone on the West Coast who I had a good conversation with yesterday. Seems like a good idea to share some tips that have helped me and to make it clear again that I have no medical training. These tips may not be suitable for you, so (as always) please talk with your own care team and bring your list of questions to them so they can answer with good advice specific to your situation.

Sending out love to everyone who is on oxygen, or considering it. Being on oxygen can be challenging, and I hope this post may make it a little better, even in some small way. We are never alone.

It is almost exactly six months since I went to emergency and stayed in the hospital for several days due to shortness of breath. I’ve been on oxygen ever since, 24-7. My oxygen rate requirement increased significantly over months, and more recently it has decreased a bit. This decrease is a real relief, since I was up to 10 on a machine that only goes to 10. I have a terrific respiratory therapist with the oxygen equipment rental company, and she brought over a second machine in case I needed to go above 10. These two machines can be linked together and go up to about 15 Lpm of oxygen. Very thankful I have not had to do this so far.

Being on oxygen can be scary and shocking. Some people have said they want to “tough it out” and avoid using oxygen, but it’s there to help us breathe better and if our team recommends it then it’s definitely worth trying. For me and for many others it made such a world of difference. I was having a hard time walking from one room to the next in my small home prior to going on oxygen. Even with it, I still need to move slowly. Walking slowly is challenging for me, and my kids will tell you that, as will anyone who was within hearing distance of us today while walking up and down the street, my youngest reminded me to slow down SO MANY times, out of love and concern. I need to be reminded. I get excited and tend to speed up. Oxygen is extending my life, and right now there is no option for me. I sleep with it, shower with it, and keep it going all the time.

When suffering from shortness of breath, it’s important to relax and take long, deep breaths. In through the nose and out through the mouth. This might feel like it’s very difficult, but it really matters. This is the way to change back to “normal” breathing, and it’s doable. Leaning forward in one’s chair, or on a counter or chair back if standing, can help also, as can sitting up straight and putting one’s elbows out so there is more room for the lungs to expand. Some people find it helpful to put a fan on. It seems counter-intuitive to slow down the breathing, but long deep breaths is important, and relaxing to make this possible is important. Ask your team what is best for you.

I’m using a machine that sucks in air from the room and shoots out oxygen through tubing which goes into my nose through a nasal cannula. This can be drying for the nose and throat, especially at higher flow rates, so Secaris nasal lubricating gel was recommended, applied using a very small amount on a q-tip. The directions say every 4 hours or as needed. I’ve been using it for almost six months and haven’t even used half of my 30g tube, but I don’t put it on as often as I maybe should. Perhaps this is too much information, but my nose bleeds frequently, especially in the dry weather and on higher oxygen levels. It is important to keep the airway clear so the oxygen can get through easily. (Also important to not use oily / greasy moisturizers near the tubing.)

Things can go wrong, and when one is relying on an oxygen machine to stay alive, it’s important to think these possibilities through and have plans in place, just in case. If my machine stops, a loud alarm sounds. This has happened a couple of times, and I’ve also accidentally pulled the cord from the wall (usually by trying to go too far from the machine, especially when the cord gets tangled up). Obviously, it has worked out just fine every time. One machine needed to be replaced, and a representative from the rental company came over and took care of that promptly. Also, we had an electrical problem in our home which required calling an electrician to get it fixed. He was great and had the problem solved within a couple of hours of calling him.

It’s important to regularly check for and straighten out kinks in the tubing that can decrease oxygen flow, including twists in the tubing by one’s neck. I check this several times each day, and always before going to bed. I monitor my oxygen levels (%SpO2) using a little device that fits on the finger, which also shows the heart rate. If you have one, you can ask your respiratory therapist to check for how accurate it is. I’m supposed to keep my oxygen levels between 91-95.

I also have oxygen tanks, with weekly deliveries to replace empty with full tanks (and bring replacement tubing etc.). Obviously, it’s important to stay on top of this. We make sure that there is always an extra tank nearby (ideally in the same room) in case of emergencies so we can switch the tubing from the machine to the tank for seamless oxygen supply. My kids are awesome about this and come running if the machine sounds. I use the tanks when out walking or going on trips to the hospital for example.

Speaking of hospital trips, when at appointments I use the hospital oxygen, whether a big tank on a wheelchair or being plugged into the oxygen in the wall by a hospital bed. It’s important to check the hospital tank gage levels because, even though they are so big, they can empty out too. Twice now I’ve emptied out all the oxygen from a large hospital oxygen tank. Obviously all worked out fine, but it’s important to have emergency plans in place and to ask for help when we need it. Very grateful for the people who’ve come rushing to help. I now always also carry my own tank for a back-up. It’s a bit awkward, but worth it. The rental company included a bag for the knee-high sized tanks so I put it on my lap in the wheelchair.

The thought of being on oxygen can bring lots of feelings, but if our team recommends it then it could really make a terrific difference for us, extending our lives potentially for months or even years. Ideally our team will figure out the cause and find a solution to improve our health, but until then we can benefit so much from the support of oxygen. Please make a list of your questions and talk with your team about them. They will have the answers that are appropriate for your best care. You can ask for a palliative care team for symptom management (studies show that people who have a palliative care team live longer and better – it’s not just for end of life care). You can also ask for a respiratory therapist and/or a physical therapist. Lots of people benefit from oxygen. We are never alone.

By the way, the dog seems to love oxygen tubing and is typically seen lying on it, often with his enormous head on it and/or his paws wrapped around it. As massive as he is, he has not decreased the oxygen flow, nor has he ever pulled out the electrical cord from the wall. Who’s a good dog!

#hope

#love

#oxygen

#life

#dog

Brief Summary of Treatment in Two Parts

A bit of background for those interested in a summary of treatment lines, in two parts. With a huge load of hope!

First since 2018:

I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so did radiation on those pesky spots, but did not get hoped for results. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed / Alimta (IV chemo, 3-week cycles). This ultimately continued 24 cycles, till March 31 2022.

In February 2022 I was admitted to hospital with gradually worsening shortness of breath of unknown causes which had become very serious. I started on constant oxygen and have continued gradually increasing the flow. Many tests were done, but nothing jumped out as a likely cause. Steroids, puffers, a transfusion and a couple of other drugs were added to my list, but no major improvement.

In Spring 2022 I continued to decline and was doing very poorly. The experts wondered if it was due to the Pemetrexed, and decided to stop the IV chemo. I continued on the Lorlatinib, and every scan since has shown the cancer remains stable or shrinks a little. I’m still on oxygen, still not much better, but a little later today we’re going to talk about whether we should consider pausing Lorlatinib to see if that helps with breathing.

Always holding onto hope!

Now since 2013 Diagnosis:

December 2013 – April 2014 IV chemo, still coughing (4 months), pneumonia several times

July 2014 – May 2015 Crizotinib (11 mos)

May 2015 Ceritinib start. Scans clear fall 2015 (20 mos)

Jan. 2017 Alectinib feel better than had since Dx (20 mos)

September 2018 started Lorlatinib feel fantastic!

—-

October 2020 radiation, 5 days – then back on Lorlatinib

Pneumonia

November 2020, started Alimta (Pemetrexed) 3week cycle. Pneumonia after first cycle.

March 24/21, still going strong. Feeling better on Pemetrexed and getting stronger. Praying for new treatment options. 

April 6/21, very tired this cycle, but on evening of 12th starting to feel energy returning. Praying for new treatment options.

Feb 2022 hospital for shortness of breath

April 2022 still short of breath and uncertain why Still praying for new treatment options. 

NVL-655 May be an option

#hope

Shortness of Breath

This is a good time to let you know that I’ve been experiencing some shortness of breath. It has suddenly gotten much worse, and yesterday a phone call to the nurse updated the team with that news. She thought we should try to move the date of my CT scan up, and took steps to make that happen. I got a call on Thursday afternoon with a reschedule for late Friday evening instead of next Friday. Very thankful for a good care team and the opening at the hospital.

When my friend dropped me at the main entrance to the General campus of The Ottawa Hospital, I thought I would be able to walk (slowly) to the CT scan module, but it turned out that I couldn’t even make it to the COVID screening station. I sat in a wheelchair that was “parked” nearby and texted my friend who came straight away and wheeled me to my CT scan, then to Emergency. A kind nurse there (who had lost both parents to lung cancer) hooked me up to oxygen, and my blood ox is now at 100%. I’m feeling so much better!

Obviously we need to figure out what’s going on and come up with a plan, so we’ve run a few tests and are waiting for results.

I plan to update you again when we know more.

Just checked again and the monitor says my blood oxygen level is still 100% – what a great feeling. Very thankful for oxygen.

Hoping and Cheering for Much More Research

Chemo number 19 down this afternoon! I’ve been getting chemo every three weeks since November 2020 and we are so very thankful I’m still going strong. Nineteen rounds, over a year … this is worth celebrating!

Some people are afraid of chemo and / or very reluctant to take it. Chemo is way easier than it used to be. Everyone is unique and chemo affects everyone uniquely so why not give it a try? I’m finding it’s doable, even after a year, even after eight years of cancer treatments. Every three weeks there are several days when I’m very tired, and there are a few other side effects. This is hard but not too hard with plans in place and a good support team. I started chemo with the hope that there would be a new treatment, a clinical trial ready for me maybe even as soon as last summer. I keep hanging on, hoping for research to come through for me and others like me. More research means more survivors and better survivorship.

So many of us are making the most of the gift of time we are being given, doing our best to live well with lung cancer and/or other kinds of cancer, reach more milestones, make more memories. I work hard at advocacy and supporting people diagnosed with lung cancer and other kinds of cancers because I know it really matters and it makes a difference.

Chemo can bring a mental and / or emotional battle as well as a physical battle. I remember well the very first time I had chemo, back in December 2013, five days after I was diagnosed with stage four lung cancer. I had worked so hard to take good care of my body by living an active life, eating healthy, and using only natural, toxin-free products, and here I was at the cancer centre to have a hole poked in my arm to inject toxic chemotherapy. I cried. I still find this process challenging, but I know it’s worth it because although it brings some harm to my body, it’s kicking cancer to the curb. Every scan this year has been good news that the cancer is stable or slightly smaller. So thankful! Definitely worth it!

After eight years of constant treatments (mostly targeted therapies which are generally much easier on people than chemotherapy is) like so many others I’ve suffered a long list of treatment-related side effects, many of which have lasted through these eight years. Like many other people I have experienced nerve damage, especially to the hands and feet, hearing loss, vision changes, skin problems, digestive issues, changes to nails and hair, and many other things. Survivorship is good and it can bring challenges.

I’m very thankful for over a year of chemotherapy which has helped bring my total up to eight years of stage four cancer survivorship. With so many others affected by lung cancer and other cancers, we hold onto hope for a clinical trial or other form of new treatment that will work for us and keep us going strong for years. I know beyond a shadow of doubt that things can change in the blink of an eye! Having lived in Ottawa Canada most of my life, I’ve seen Winter melt into Spring each year and this helps reinvigorate hope and faith! Yesterday I drove into the Cancer Centre for blood work through such ice and snow that had to use my memory and imagination to figure out where the street lanes were. Today it was mostly melted, the sun was shining and the temperature was a balmy 14 degrees Celcius (57 degrees Fahrenheit) with a beautiful breeze! Such a gorgeous and rare weather experience for December in Ottawa Canada!

I got back home in time to see a lovely friend from church who brought a five-day feast (from her and two other dear souls) for the kids and me, then a few calls and messages from caring, supportive friends. Grateful for many kind friends who make being on chemotherapy so much more doable. It takes a team. We all need support. So much to be thankful for!

Nineteen rounds down and hoping for much more research and many more treatment options for people facing cancer!

My Roller Coaster Adventure Ride

Well, that bump was bigger than expected! Sadly the radiation in October did not do the cancer-crushing work we were hoping it would. My recovery wasn’t going as well as anticipated, and tests showed I had pneumonia as well as cancer growth. My oncologist and I discussed chemotherapy, which is the only treatment option available to me currently.

My oncologist and I both reached out to some Canadian lung cancer researchers to investigate whether there might be a clinical trial suitable for me available in Canada, either now or in the near future. I was disappointed but not surprised to learn that there is nothing on the horizon.

There are some possibilities in the US, so I applied for the “ALK Second Opinion Program”, which is funded by some generous people affected by the same kind of lung cancer that is affecting me (ALK). I learned within a couple of hours that my application was accepted, so the program will pay for me to have an online appointment with one of the top ALK researchers in the world. I have met most of the doctors on their list, and it is a tough decision because they are not only brilliant but also very kind. I plan to go with the Boston team because, although Dr. Alice Shaw is not spending much time seeing patients there now, they may have a clinical trial appropriate for me in future, and Boston is much easier to travel to than Nashville or Colorado. My oncologist has very kindly offered to participate in the online appointment with me, and one of my dear ALK sisters has offered to walk with me through this process. I’m very grateful for the support.

I had my first chemo of 2020 on Monday November 30. It hit pretty hard, and I had to go to emergency with a fever which turned out to be another round of pneumonia. Antibiotics helped a lot, and I’m feeling much better. I’m still very tired, coughing a fair bit, and having problems swallowing (since August). Thankfully there is soup, and I’m very grateful for friends who have brought so much soup!! It’s great to have different kinds of soup that I don’t typically make, and it’s so nice to not have to make it myself!

My next chemo is Monday December 21, which will get me through the holidays, as my awesome oncologist noted. The following one is scheduled for January 11. Apart from the blood tests on the Fridays before, I’m hoping to not need any additional hospital visits! đŸ˜€

This is quite a change from the targeted therapy lifestyle, which tends to be much more smooth sailing, with fewer appointments and blood tests. I’m so very grateful for my many years of reasonably good health while living with stage four lung cancer. I never expected to live seven years past my diagnosis, and now I have much more hope than I did at diagnosis. I am hopeful for new treatment options. I hope that the chemo I’m on now will work more effectively with fewer side effects than the older harsher chemo I took in 2013-14. I hope researchers will develop new treatment options that will be available just when I need them. That has been my roller coaster adventure ride with lung cancer these seven years, and I hope for more! Oh yes I do!!

More than that, I hope for more research to extend the lives of many more people affected by lung cancer, because there are so many of us and we all want life and need hope. So if you know any lung cancer researchers, please thank them for the good work they are doing and encourage them to keep up the good work with diligence and urgency. So many of us are counting on them!

I’ve worked hard to keep doing light weights, stretching and walking through the Fall. My daily step count has fallen below my usual 9000-10,000, but I haven’t given up hope!

So grateful for friends, for so many delicious soups (and other yummy things!), and for so many calls and messages. This has really sustained me and helped keep me buoyed up.

I don’t talk about my faith a lot, and I would never want anyone to feel like I’m pushing Christianity on anyone. I want to be clear, please stop reading if you are feeling offended. My relationship with God means so much to me, and keeps me going. God is good all the time, and I am grateful for the love of God poured out through Jesus, and the ever-present comfort of the Holy Spirit. It’s the love of Jesus that motivates my advocacy, and any good I do is because of God working through me.

#hope

Seven years – Wow!

Cheers to the researchers, and the whole team who has helped keep this mom of three alive for seven years since a stage four lung cancer diagnosis December 2013!

I’m so grateful to be here! My life is enriched through knowing and spending time with a variety of very special people (whether online, on the phone or in person). I’m blessed with dear friends and meaningful work as a lung cancer survivor advocate. This weekend, two of my fellow lung cancer survivor advocates sisters gave our family this feast to celebrate my seventh “cancerversary”, along with a beautiful card. Thank you, Andrea and Kim! (photo’s of people all taken before COVID).

This seventh year has meant a lot because my youngest turned 13. She was only 6 when I was diagnosed, and she doesn’t have many memories from before then. During these seven years she has grown and matured, and I catch so many glimpses of the amazing young woman she is becoming. Now we’re in this brief, sweet spot where all three are teens. Parenting adolescents isn’t easy, but it’s a privilege and there is so much joy. The oldest is doing well in his second year of Electrical Engineering and Physics at University, and the middle one is currently enjoying a high school co-op placement perfectly suited to him and his love of music and music education. What a gift to walk with them through this season! #ResearchMatters

Here are some photo’s of the kids from the past seven years. We are so grateful for milestones and memories!

We owe a debt of gratitude to the researchers who, through creative brilliance, steadfast discipline and diligent tenacity navigate the twists and turns, false starts and dead ends that form the research pathway from bench to bedside, from idea to effective treatment.

And the whole team of administrators, statisticians, economists, funders, panel members, visionaries, regulators, encouragers, and so very many more very necessary and important team members, Thank you!

Way to go, team! Thank you! Thank you for working to keep me alive these seven years! On behalf of family, friends and communities, THANK YOU!!!

We had no idea I’d still be alive seven years after diagnosis. Please keep working hard with urgency so that I and others like me can live longer and better!

thank you

Four Down, One to Go

Many thanks to all you who have prayed, called, and messaged this week while I’ve been undergoing daily radiation treatments. I’m very grateful for your care and support. Cancer can be hard in many ways, and many of you know firsthand what it is like to be diagnosed or to walk with someone diagnosed with cancer.

We all need support, and this week has powerfully reinforced the difference supportive caring people make for someone facing cancer. Treatments this week have been challenging, and your words and actions have tremendously encouraged and helped. Thank you.

Never doubt the difference you can make for someone.

This is why I’m so passionate about lung cancer support groups. They can make a huge difference! It doesn’t take much to start one up. If you’d like to talk about it, please reach out. Helping get another support group going is definitely something worth investing time and energy in!

Four down and one to go! I’m so grateful I’m not journeying alone.

(All photo’s were taken prior to COVID-19, except the one of our Ottawa lung cancer support group meeting by zoom.)

Bump in the Road

Time for an update about my health and treatment …

The lung cancer pill that I take daily is working very well, for the most part. Most of the cancer has shrunk and stopped acting like cancer, which is what the pills are supposed to do. But, cancer cells are not always all identical. In my case, right now, most of the cancer is under control, but some of the cancer isn’t. Some is growing and causing problems, so we need to take action.

I’m very thankful for my great health care team and the new addition to my treatment plan. We will add five radiation treatments to zap those pesky spots. Adding on some radiation is best practices, often called “weeding the garden”. Radiation starts on Monday, five days in a row, then back to taking the same routine of pills. Just a little bump in the road.

I’m very thankful for supportive friends who are giving strength and love, praying and offering to do groceries and bring meals and muffins. I’m thankful that I’ve been walking about 10,000 steps a day, stretching and doing weights. There is so much to be thankful for, including beautiful Fall colours!

So, good news that the pill continues to work effectively against most of the cancer. Good news that I’m in good hands with a solid treatment plan. Great news that I’ve got support. This is just a bump in the road, and we are holding onto hope.

5 Gold Rings Pillars of Lung Cancer

12 Days of Giving to Lung Cancer Clinical Trials

What do you think of when you think of lung cancer?

Before I was diagnosed, I did not know much beyond the connection between smoking and lung cancer.

For decades, an enormous anti-smoking, lung cancer prevention campaign has been waged. Huge amounts of energy and funding have been invested, but prevention alone is not enough. In spite of prevention efforts, the Canadian Cancer Society estimates that 29,300 Canadians will be diagnosed with lung cancer in 2019. That’s the size of a town. 

A town-full of people diagnosed with lung cancer each year.

Clearly a prevention campaign is not enough.

Candid conversations which evaluate the past and examine the present shine light on paths into the future.

It’s time for lung cancer to shift to a well-rounded campaign which dedicates appropriate resourcing to five pillars of lung cancer:

Awareness, Early Detection, Treatment, Research and Survivorship.

When we allocate funding appropriately, we will drive change in lung cancer survivorship.

A town full of people each year! Who will get lung cancer next year?

Anyone can get lung cancer.

The research we fund today might extend your life.

#ResearchMatters

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #ThankYou