What a great healthcare team! Yesterday afternoon four skilled and caring nurses give great care at my chemo appointment (you can read that blog post here), and yesterday evening my terrific oncologist, Dr. Garth Nicholas of The Ottawa Hospital Cancer Centre, read that blog post and reached out. We exchanged messages so I could ask questions about the pro’s and con’s of ports and PICC lines. I was pretty sure I would go with a port line before messaging with Dr. Nicholas, but it was good to hear his thoughts in addition to the information in the brochures the nurse gave me yesterday afternoon. Even before the conversation he thought I would want the port line because he pays attention and knows me well enough to know.
Yesterday evening Dr. Nicholas submitted the request for a port line, so it’s already (!) in process and I’m very thankful. There are no guarantees since the request needs approval from the appropriate team for the procedure to take place. I’m very grateful to Dr. Nicholas for submitting the request so quickly and advocating for the port line in that request. Health care providers matter. Advocacy matters. Thank you, Dr. Nicholas, for being an advocate.
It took four nurses a total of seven pokes to access a vein for chemo this afternoon. The nurses were all kind and skilled. (They say my veins like to hide, and that sometimes happens in people who have been treated for cancer for a long time.) I asked for information about ports and PICC lines, which are alternative options to getting poked so many times. One of the nurses put in a note for my oncologist requesting him to have a conversation with me about this. Another nurse brought me pamphlets with more information about both of these options. I’ll read them carefully in preparation for talking with my oncologist.
It’s not usually this hard to get a vein. Typically it takes about three pokes, but occasionally, like three weeks ago, the nurse connects on the first try. (Merry Christmas!)
Getting poked frequently is part of the rhythm of chemo life. Blood work (poke) on Wednesday, chemo (unknown number of pokes) on Thursday … every three weeks. The nurses are skilled and kind, and apologetic when they can’t get a vein. I thank them for doing their job well and remind them (and myself) that chemo and their care is saving my life, so getting poked is definitely worth it.
Today I asked what the record number of pokes was in their unit: 12. So, keeping things in perspective, it went pretty well. They found a vein, so I didn’t have to be sent home without chemo. It only took 7 pokes. It only took 4 nurses. The chemo all went in the way it should, and is working to help keep me alive. I’m now home, feeling well, and very thankful for nurses and the kind and skilled care they give.
Happy holidays and Merry Christmas to all who celebrate! I hope you are celebrating and strong in the confidence that you are loved, deeply loved. We have seen many examples of kindness, thoughtfulness, compassion, strength and resilience over the past two years as together we have weathered unexpected challenges. We did not know how we would make it through. We were not sure we would make it through. But, having come this far many of us have grown in hope that we can and we will, that we are stronger and more resilient than we had known, that we are up for the challenge.
I’ve gone through a difficult chemo cycle this round, and am very thankful to be feeling “normal” again and working on responding to messages. I started feeling better on the 24th, in time to enjoy a delicious Christmas Eve dinner lovingly prepared by my beautiful daughter Abigale: turkey with all the trimmings. The teens/young adults and I spent much of Christmas Day together, chatting, opening presents, laughing and singing Christmas carols together. They went to their dad’s for dinner while I enjoyed a terrific plate of leftovers. I appreciated our time together very much and also enjoyed the quiet evening to reflect on Christmas and what a great day it had been.
On Sunday, after virtual Church and a quiet morning, I delivered Christmas cards to a few friends. It was lovely to be out driving, to see Christmas decorations and so many people out. I don’t drive much since COVID hit, and this felt like such a treat! I had a couple of brief chats with people who were standing on their porch while I was a good distance away, and a fun dance with a good friend who was in her living room while I was out on the street. Another delicious plate of leftovers tonight with teens/young adults for dinner.
So grateful for these good gifts and many more. There is no substitute for the good gift of time with people we care about.
COVID has struck good people we love, and obviously not just COVID. Threats are likely to be present in the New Year. Good gifts and opportunities will come in the New Year also. We resolve to hold our head high as we boldly stride forward, arms strongly linked together, working for the good, striving to control what we can control, taking risks and keeping our heart open to the new, to give and receive love and to extend welcome to strangers.
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!
Today, December 12, marks eight years of survivorship.
Before I was diagnosed eight years ago today, I had no idea I could get lung cancer. My friends and I had no idea that anyone could get lung cancer and it was a complete shock.
When I was diagnosed eight years ago, I had no idea I would still be alive eight years later. I feared that the coming Christmas, Christmas of 2013, would be my last. Here I am in 2021 with some measure of incredulity, amazed that I’m still here eight years later.
You’ve heard me say many times before that I’m here because of biomarker testing, I’m here because of research, I’m here because of a clinical trial, I’m here because of great medical care, I’m here because of the support of my friends, I’m here because of the grace and mercy of God.
To everyone who has been walking with someone with a difficult diagnosis, thank you. We know it can be challenging and we are grateful. Caring can be scary, sad and very uncertain. It takes courage, strength and character.
Personally, I’m especially thankful for the gifts of: hours on the phone / zoom, homemade jams, cards, a very special birthday party, chocolates and other treats, flowers, drives, help with jobs, meals, a special pen.
Eight years of survivorship is really something to be celebrated! Today I raise my glass to celebrate you who have helped me walk this challenging path. Thank you!
Before I met Kim MacIntosh I knew I would like her, because of the way my friends were speaking of her.
I couldn’t go to the World Conference on Lung Cancer in Toronto in 2018 because I had suffered progression. Andrea and Peggy promised to tell me all about it when they came back, and they did!
There were so many exciting stories: people they’d met, promising new research, fun times, but of all the details in all the stories, Kim was the person who stood out by far! I couldn’t wait to meet this lung cancer survivor advocate that I’d heard so much about.
Kim started driving in to our Ottawa lung cancer support groups – more than an hour each way, and she fit right in with the group. It was so good to get to know this lung cancer sister.
Kim cared about people. She deeply loved her family: husband Dean and daughters Ceilidh and Sadie, her parents, siblings and extended family; and friends, especially her besties. She spoke often of them and participated in all kinds of traditions with them that filled her calendar with meaning, joy and laughter. She knew half of Cornwall, and a good deal of other people as well.
Before Kim was diagnosed with lung cancer she worked as a nurse and had a fierce passion for advocacy. Kim brought her medical and scientific knowledge, her understanding of how the system works, and her prior passion for people and advocacy to her lung cancer advocacy. She could often be overheard encouraging people to apply for their disability parking pass or tax credit, reminding them that they were entitled to it and telling them step by step how to go about applying. Kim cared about people.
Andrea and I compiled this list of highlights of Kim’s lung cancer advocacy:
– early member Ottawa Lung Cancer Support Group (October 2018)
– IASLC World Conference on Lung Cancer, Toronto 2018
– staffed outreach tables at The Ottawa Hospital Cancer Centre
– shared her cancer story at the Ottawa Lung Cancer Patient Summit, November 2019
– went to LUNGevity conference in Washington DC, 2019
– member of the EGFR Resisters
– started the EGFR Canada fb group
– early leader in the Canadian Lung Cancer Advocacy — Breathe Hope fb group
– very strong presence on Twitter and on fb. Shared lots of research etc.
– co-designed the Lung Cancer Strong tee shirts and organized the ordering, printing and distribution
– completed IASLC’s STARs Program in 2019 and attended WCLC 2019 in Barcelona
– participated in June 2019 CCSN/LCC Breakfast and meetings with MPPs on Parliament Hill
– made a video on her experience as a LC patient for CCSN’s Right to Survive campaign
– did a podcast for LCC with Dr. Paul Wheatley-Price
– member of Programs Committee, Lung Cancer Canada
– participated in The White Ribbon Project for lung cancer awareness and travelled in both Ontario & Quebec distributing white ribbons to lung cancer patients, advocates & medical staff
Kim was a good friend to many, a devoted wife and mom, and a fierce advocate for lung cancer and other important causes. She was deeply loved and she is missed. RIP, Kim, and thank you.
Kimberley Ann (Moran) MacIntosh September 30, 1967 – November 17, 2021
I first met Heidi in a Zoom call organized by Team Draft the summer of 2020. Right away it was easy to see that she is a loving person who genuinely cares about people. A few months later she told us (in a zoom call organized by Team Draft) that she was fed up with her cancer center’s reluctance to promote lung cancer awareness, that she had asked her husband Pierre to make a big white ribbon for their door, and then they started making them for friends and strangers. She generously sent them out to everyone on that call, even me in Canada. I was the only Canadian on that call and, knowing that international shipping can be expensive I didn’t want to ask. Heidi’s love and generosity made my concerns seem ridiculous. She wanted to give ribbons to everyone willing to stand up for lung cancer, to make people feel cared for. Heidi is rare and meeting her was very special.
Those first few ribbons have multiplied into a movement! Hundreds of lung cancer advocates are rising up with their ribbon, taking photo’s and posting on social media, raising lung cancer awareness across the US and Canada, and the Netherlands, the Philippines, Ireland and expanding across Europe in partnership with Lung Cancer Europe, as well as other growing international partnerships. Together we are driving change.
Heidi and Pierre have made 832 ribbons, and also assisted at other builds as they traveled around the US on The White Ribbon Project Tour. Heidi and Pierre have paid for all the ribbons they have made and sent, and all their expenses on the six-week tour. As they travelled around, rather than taking donations, Heidi and Pierre encouraged people to invest in their local community, to form a team, host a build or contribute to one, participate in making ribbons with love and giving them with love. Teams have been forming in many communities, and this is where the action happens!
We are very grateful for teams in Canada like Lisa and Bill Weir who have made 244 ribbons, Alvin and Carolanne Johns who have made 45, the Monds’ team who made 20, and others who are in process of team building.
The Ottawa team held a community build in solidarity with The White Ribbon Project Tour. People contributed their time, talents, supplies, food, drink, even hand sanitizer. In keeping with the inclusivity of The WRP, patients, caregivers, survivors, family, friends, doctors, nurses, administrators, politicians and others were invited. There was much love and laughter at our outdoor venue that hot August afternoon. What a gift to be together, building relationships as well as ribbons, loving and serving our community.
The Ottawa team knows that advocacy is relational work which doesn’t just happen during Lung Cancer Awareness Month in November. We are committed to making people aware and making people feel loved year round. That’s why we set up outreach tables in our cancer centre to welcome people, show them love and give them information. We started annual summits to gather the community and offer learning opportunities. We also gathered a team to put together a welcome package which includes a letter from lung cancer survivors with contact information. This is given out year round, to everyone newly diagnosed. The Ottawa team made a choice to be involved in making people aware, and making sure people know they are loved.
What is your cancer centre doing for Lung Cancer Awareness Month this November? What is the plan for lung cancer every day?
The White Ribbon Project is committed to making sure people affected by lung cancer know they are not alone. Together we are committed to changing the public perception of lung cancer. Together we are driving change. It takes a team of people who decide to take action to get the job done. Let’s work together!
I’m alive today because of biomarker testing, research, and access to new treatment options. Yes, and great care from my oncologist, Dr. Garth Nicholas, and healthcare team at The Ottawa Hospital Cancer Centre.
I was diagnosed with stage 4 ALK+ lung cancer in 2013 when my children were only 6, 10 and 12.
I started on chemo, then four different targeted therapies … Most treatment lines lasted only a year or two; each gift of time meant more life, more time with family and friends, more opportunities to serve as a lung cancer advocate
Every month, every year has meant memories and milestones, opportunities to celebrate life and be with my kids as they have grown.
My youngest was just about to start grade one when I had a cold with a cough that wouldn’t go away which was eventually diagnosed as lung cancer. Now she is in grade 9, just started high school. My middle child can play almost every musical instrument and will graduate high school this year. My oldest, who was in grade 7 when I was diagnosed, is now in third year university, studying Electrical Engineering and Physics.
I can’t tell you how thankful I am to still be with them. Very thankful for biomarker testing, research and access to new treatments… and my terrific healthcare team.
Targeted therapy is such a game changer. New targeted treatments are so much better than chemotherapy – it’s a night and day difference – and these new treatments keep getting better and better!
Targeted therapy means more energy, more good days, more ability, more time for the people we love, more time for what matters, more life.
My children are my top priority. I am also passionate about lung cancer advocacy. I started on Lorlatinib in 2018, and it has given me great quality of life, so I have been able to invest about 30-40 hours a week in lung cancer advocacy.
This is an excerpt from a presentation I’ve been making (as part of a team) to a number of groups this month. Next come many slides with pictures and quotes from people affected by lung cancer, people who I love, who are like family to me. They are living life more fully, because they have access to new life-extending treatments called targeted therapies. These are people who matter and are worth fighting for. I’m honoured to “bring them with me” as part of these presentations, and appreciate very much their willingness to share pictures and stories with the goal of increasing access to new drugs.
The presentation is about the importance of fighting for people to get access for new targeted therapies, because this is a matter of life and death and people matter. Research alone isn’t enough. We need to enlarge the boundaries of our concept of research to also include biomarker testing and access.
What are new drugs worth if we don’t do biomarker testing to find out which people will likely benefit from the new treatment? With 100% biomarker testing we will know specifically which type of cancer more people have, and be able to match more people with effective treatments. With 100% biomarker testing, we will also be able to more quickly accrue more patients to our clinical trials so the trials will show results more quickly, and effective new treatments can get approved and funded sooner.
What is the value of researchers working hard to develop effective new treatments, if people cannot get access to them? Access matters. It is often a matter of life and death. We must work to close the gaps and make sure people can benefit from research. Could you imagine how hard it would be to be a dying cancer patient who knows there is an effective treatment that would very likely extend their life, but they can’t get access to it? How hard would it be to be the patient’s loved one? The patient’s oncologist?
Biomarker Testing + Research + Access = Life
On this World Cancer Research Day, let’s celebrate research and researchers! Let’s celebrate fundraisers, administrators and patient partners! Let’s celebrate the entire research team! Let’s broaden our concept of research and fight together for more people to benefit from effective new research.
Scanxiety is real… the anxiety many of us can feel around scan time. Most who’ve been diagnosed with lung cancer are on treatment, whether it’s a targeted therapy in pill form, chemotherapy, immunotherapy, or a new kind of therapy devised by researchers to keep us living longer and better. Whether alone or in combination, most are on treatment and get regularly scheduled scans to see if the treatment is working.
Sometimes some get cues that the cancer may be growing or shrinking, side effects that may be indicators, that might give an idea of what is happening inside our body. Often it’s a mystery. Lung cancer can be sneaky.
My 13th round of chemo was on Thursday August 12. I also continue to take a daily targeted therapy, Lorlatinib. This combination has growing popularity with some of the top lung cancer doctors in the US. I’m thankful to be able to have access to both treatments here. Lorlatinib is very effective at keeping the cancer from spreading to the brain. My CT scan was Monday morning (the 23rd), and results just came in: all is stable or slightly better! Such great news when someone gets good scans!
In the past few months, Several dear friends have gone through progression and questions about what kind of treatment path to take forward. Some have faced serious health challenges. These can be scary times. So grateful every time there is good news. We keep holding onto hope for more research to bring more treatment options which will help further extend life. Often there is uncertainty, and it can look like the research may not be keeping up with the need. And then there’s the issue of access: what about people who cannot use a treatment because they can’t get it? Maybe it’s too expensive or not available where they live or when they need it?
Lorlatinib is a drug that has helped keep me alive and living very well for years. I’m very grateful for it and have been working with others for some time to get better access to Lorlatinib for more Canadians. I’m thankful for the compassionate release program from Pfizer which has meant that every month a package of life-extending medicine, probably worth over $10,000/month, is delivered to the door at no charge. This morning, a cheery FedEx employee handed over the small box with a lovely greeting. He had no idea how thankful I am for that delivery.
Very grateful to continue to receive free Lorlatinib and that scans are good. Very thankful for researchers, clinical trials opening space, terrific care teams, dedicated advocates, and hope. It’s so important to hold onto hope.
(Apologies for the older photo’s. My phone is not currently working.)
I spent the week-end enjoying our ALK+ Family Summit, and learning about the latest in research for our particular kind of rare lung cancer. Don’t let the term “rare” fool you: we had over 700 people register for our summit. I enjoyed the hospitality of Jo-Ann and Craig Smith for the first day: together we watched the Summit in their awesome space and enjoyed great conversation while they served terrific food and drinks.
I opted to participate in the Summit from home on Sunday since I was leading a “Breakout Room”, which meant that I talked about The White Ribbon Project five times in a row, to five different groups of people who came into the breakout room for 20 minutes each session. It was a great was to spend a chunk of the day, interacting with people I knew, meeting people for the first time, and talking about one of my favourite subjects: lung cancer advocacy!
The White Ribbon Project is an inclusive, unbranded, international grassroots movement, changing public perceptions of lung cancer. As I said in my presentations, we are looking for regional ambassadors – champions – who will host Ribbon Builds and distribute Ribbons. If you are interested in learning more about The White Ribbon Project, please check out our new recently launched website. You can also connect with us through email or social media.
I filled the slide deck with pictures of some amazing people who are part of The White Ribbon Project, many of whom are part of our ALK community, some of whom participated in the breakout room today. In case you’re interested, I’ve put copies of most of th slides below. Heidi and Pierre could not be part of the presentation today, but generously pre-recorded a five-minute video which was part of the slide deck, but not included here.
A big thank you to everyone who is in the photo’s and/or took photo’s! Special shout-out to Heidi & Pierre, Chris, Anne, Michelle, Bonnie, Rhonda and Dave – The White Ribbon Project #team.