A quick note to let you know that I’m home from my morning appointment: the port was successfully inserted earlier today. The clerk, nurses and doctor were all very kind and competent. One nurse successfully inserted an IV line in one try with virtually no pain. She also brought ice chips afterwards. 🙂 Very thankful!
The procedure itself was pain-free and easy (for the patient). Before arriving at the hospital I felt a bit nervous, but meeting some of the people on the team and learning more about what was going to happen quickly made me feel a whole lot better. I put myself into their competent hands and relaxed even before they gave the drugs that help the body relax. Big thank you to everyone who prayed, sent kind words and/or thoughts.
I don’t feel any pain but do feel a bit tired. The plan is to rest today.
Below are some pictures from the passenger seat of a moving car on the ride home: Canada’s Central Experimental Farm (Ornamental Gardens), the Dominion Arboretum, and the Rideau Canal Skateway (Dow’s Lake) – World’s Largest Skating Rink and UNESCO World Heritage Site. What a beautiful, sunny day! Very grateful!
That was quick! This morning I received a call with an appointment for my port line to be installed. This is scheduled to happen on Thursday February 17 at 7am. The procedure takes about 45 minutes and is done with conscious sedation. I’ll be there for about 3 hours and won’t be able to drive myself. I should be able to make it to chemo later that day, and the chemo nurse should be able to use the port that day for chemo #22. We know that things can get rescheduled, especially during COVID, but the plan is for me to get a port in just over 3 weeks! That means that this coming Thursday may be the last time nurses need to hunt for a vein to give me chemotherapy. Very exciting! Very grateful!
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.
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!
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.
My hope factor increased today and I hope yours will as well! I got an update today that improved my world! Researchers are working on bringing a whole lot of good our way, and I can’t wait to tell you about it!
Over a year ago I participated in the American Association for Cancer Research Scientist <–> Survivor Program. Today through Wednesday, the AACR is putting on a Virtual Meeting on COVID-19 and Cancer. I really want to tell you about two virtual sessions I attended today: one about clinical trials, and the other about vaccine development.
I was very excited to hear the clinical trials forum speakers talk about how their clinical trial communities have reacted to world changes brought on by COVID-19. I’ve heard some people express fear that clinical trials might take a back seat to COVID-19, but there’s a lot more good reason for hope and optimism! Speakers in today’s forum described how they had worked creatively to overcome challenges, leverage tools and technologies, while focusing on patient safety and accuracy of data.
This pandemic has shifted the focus of many clinical trials to be more patient-centric. Researchers and doctors are finding that telehealth can work really well, and many tests are being done closer to home, sometimes even at home, thanks to the quick pivoting of regulators and investigators which makes clinical trials work effectively in these different times.
Decentralizing clinical trials improves and expands access. Clinical trials accrual is increasing, as is diversity. Underserved populations are being recruited, getting improved access to clinical trials. This is important good news!
Leaders in clinical trial research are not just reacting quickly to unusual times, they are also taking advantage of what they are learning to reimagine and work for a future with better, faster, simpler and cheaper ways of making innovative new life-extending therapies available to people affected by cancer.
The vaccine development symposium was fascinating, exciting and inspiring! Researchers are working at breakneck speed, crushing previous vaccine development records and producing hopeful results. Researchers made it clear that they are building on earlier work of MERS, SARS and other researchers who laid the framework upon which current work is built. Pandemic preparedness matters. #ResearchMatters
So grateful for front line workers, researchers and all who work to make research happen. Thank you.
More details about the events below these pictures from the awesome AACR Annual Meeting 2019 #AACR19 …
FORUM 1: REGULATORY AND OPERATIONAL IMPLICATIONS OF CANCER CLINICALTRIAL CHANGES DURING COVID-19
MODERATOR: KEITH T. FLAHERTY, MASSACHUSETTS GENERAL HOSPITAL BOSTON, MASSACHUSETTS
José Baselga, AstraZeneca, Gaithersburg, Maryland James Doroshow, National Cancer Institute, Bethesda, Maryland Kristen M. Hege, Bristol-Myers Squibb, San Francisco, California Paul G. Kluetz, U.S. Food and Drug Administration, Silver Spring, Maryland Patricia M. LoRusso, Yale University School of Medicine, New Haven, Connecticut Caroline Robert, INSERM U981 (Gustave Roussy), Villejuif, France
SYMPOSIUM 3: COVID-19 VACCINE DEVELOPMENT 2:20-4:20 P.M.
Introduction E. John Wherry, University of Pennsylvania, Philadelphia, Pennsylvania
Rapid SARS-CoV-2 mRNA vaccine development enabled by prototype pathogen preparedness Kizzmekia S. Corbett, National Institutes of Allergy and Infectious Diseases (NIAID), Bethesda Maryland
Pan-HLA prediction of SARS-CoV-2 epitopes* Katie M. Campbell, University of California, Los Angeles, California
Sequence-based prediction of SARS-CoV-2 vaccine targets using a mass spectrometry-based bioinformatics predictor identifies immunogenic T cell epitopes* Asaf Poran, BioNTech US, Cambridge, Massachusetts
A computational approach to identify a possible SARS-CoV-2 vaccine from receptor binding domain peptide sequence on spike glycoproteins* Majid Al-Zahrani, King Abdulaziz University, Jeddah, Saudi Arabia
Synthetic DNA for EID outbreaks including SARS-CoV2 David Weiner, The Wistar Institute, Philadelphia, Pennsylvania Closing Remarks / Discussion E. John Wherry
All it takes is two. Put two lung cancer survivors together and anything could happen! Get three together and it could be a support group!
There’s nothing like meeting someone you really connect with! It has happened time and time again, the spark, the recognition that someone else gets it, they understand your experience, and they care.
Two survivors together is powerful. There is strength in numbers, and two is enough. Get three and now we’re really cooking! There is no telling what could happen!
Two survivors plus a social worker or psychologist, or any third who is willing to lead, and all kinds of good could come of that. Just ask Alyson and Christine about what happened in Winnipeg less than a year ago. The lung cancer support group they started in Spring of 2019 stood up and clapped with gratitude for them. They just celebrated the holidays with a party this week! What a difference this support group is making! Way to go, Alyson, Christine, Mike, Kelly and team!
It may seem hard to start a support group, but it’s not too hard. People do it all the time. Support groups are best practices and they do good for people around the world. It’s not too hard to start one. There are courses in leading groups, lots of books, experienced leaders, and other resources to learn from. Right in cancer centres all over the world, there are loads of trained, caring people working in psychosocial oncology. It’s not too late to learn. Alyson and Christine asked a lot of questions when they were getting started, and a social worker here in Ottawa helped them connect with teammates in Winnipeg. Reach out! Ask questions! Support groups are best practices, and lots of people could benefit if we had more of them.
We’re very grateful for the lung cancer support group in Ottawa. It was started (in October 2017) by Social Worker Diane Manii and a team here in Ottawa, with Lung Cancer Canada and the Ottawa Regional Cancer Foundation. It continues with their support and the support of The Ottawa Hospital. There is much generosity toward the Ottawa support group, and strong support within the group. The group has also started reaching out at the Cancer Centre with monthly hope tables (since August 2018) which are greatly appreciated. The group participated in Ottawa Race Weekend (#LungCancerStrong) in May 2019, raising funds as “Lung Cancer Team Canada” for Lung Cancer Canada, and growing numbers are participating in political advocacy for lung cancer.
I’m very grateful for the women and men I’ve met through our Ottawa support group. They are silver linings of lung cancer.
If you don’t have a support group and you would like to explore starting one, please start looking around and asking questions. You may be in an area where it may not look like there are enough people or resources for a lung cancer specific group, but don’t let that discourage you. People are willing to help; reach out!
Once you have three, there’s no telling what you can do!
To celebrate support groups and survivorship, please give generously to lung cancer research!
Six years and seven weeks ago, like many other parents of young children in the schoolyard that year, I had a cold with a cough which persisted.
Six years ago I was constantly coughing, and beginning to realize that the inhaler the doctor prescribed wasn’t working. I coughed so much I had to step down from the choir I had been rehearsing with to sing Messiah.
Six years ago we had started to suspect something was terribly wrong. I could hardly speak a sentence without coughing. When faced with a flight of stairs, I wondered if I could climb them.
We knew something was wrong, but had no idea it could be lung cancer. I started undergoing a myriad of tests, and when we finally got my diagnosis that December, it seemed impossible. When I learned I had advanced lung cancer I had no hope.
I did not know what to expect, but I never expected this: that six years later I am living life!
I had no idea I would still be alive six years later, never imagined I could be this alive and vibrant.
I never dreamed I would live this long.
Shortly after my diagnosis I read the research on Crizotinib, the first new targeted therapy pill my oncologist mentioned. I rejoiced that so many of the people on Crizotinib were still alive six months later. Six months seemed like such a long time, such a lot of opportunity to live, such a great gift for someone with lung cancer… and here I am, six years later.
Six years: chemo, Crizotinib, Clinical Trial: Ceritinib, Alectinib, Lorlatinib. Cutting edge new research keeping me alive these years. Every time the cancer outsmarted a med, a new treatment has been available – typically just in the nick of time – so very grateful! Research is giving me so many days to celebrate, gifts of countless moments, memories, milestones.
My children were 6, 10 and 12 when I was diagnosed. They have had a Mom right with them as they’ve grown these six years. My daughter is now 12, my sons 16 and 18. My oldest started University this Fall (Electrical Engineering and Physics, still living at home!). I’m still in the picture. I still get to talk with them, cook for them, hug them, encourage them, love them.
“Grateful” is only the beginning of how immensely thankful I am to be alive and living so well six years later. I thank God for lung cancer research and the difference it makes.
So many great stories to tell, pictures to share, and blog posts yet to write! I’m feeling fantastic on my current med. I’m enjoying riding my bike. I’ve travelled three of the past five week-ends (all lung cancer related). I have loads of energy and I’m so very grateful.
#ResearchMatters #Hope #Grateful
On Saturday May 25, a fantastic group of lung cancer survivors, patients and friends are walking the 2K. It’s Ottawa Race Week-end, and we are joining in the celebration! “Lung Cancer Team Canada” is walking on behalf of all Canadians affected by lung cancer. We know that not everyone can walk, and we are walking to celebrate the fact that we can and to represent all who can’t.
If you can, we’d love for you join us! If you want to donate, we welcome that too. We are raising funds for Lung Cancer Canada, Canada’s only charitable organization devoted solely to Lung Cancer.
What I want most is for you to know that more research means more survivors and better survivorship! Please join in and celebrate the difference that lung cancer research makes. Cheer loudly for us, because we are lung cancer survivors, and we are strong!
We are also very grateful for our caring and hard-working #lungcancer team at The Ottawa Hospital. Dr. Paul Wheatley-Price, one of our terrific lung oncologists, is running the marathon for all Canadians affected by lung cancer on Sunday morning. Please join our group of lung cancer patients and survivors in watching for him and cheering loudly for him!!
On May 25, “Lung Cancer Team Canada” is walking 2K for all Canadians affected by lung cancer. We are #LungCancerStrong and we hope you will join us! Please walk with us, donate, and cheer for us! We welcome your support!!
An encouraging email from a dear friend this morning reminded me that if you don’t follow me on facebook, you may not know how grateful I am for your generous flow of donations which filled my LUNGevity Summit Survivor Challenge account all the way to the top and even a little bit over! I am excited to be going to LUNGevity Foundation’s International Lung Cancer Survivorship Conference in Washington, DC, April 26-28!! THANK YOU!!!
I am grateful to be blessed in so many ways, and one of the biggest gifts is my community, my circle of friends who hold me with such love. Thank you for being part of that community. I have no words for how grateful I am for you.
Yesterday my husband bumped into a teacher from back in our eldest’s elementary school days. She told him she follows this blog and prays for me every night. When he told me, I got a little teary with gratitude. I can’t tell you how many times people have said they read this blog and think of me and/or pray for me regularly. Thank you! You are making a difference!
You help me have hope! Thank you!
As my dear friend said in her email, I have opportunity to share amazing hope… here in Ottawa, in Atlanta the end of this month, at the LUNGevity conference in April, and who knows where else! Thank you for the ways you help me open up the doors!