Disappointing News

One advantage of needing help getting into the cancer centre is being allowed to bring a friend into my appointment with the oncologist. I’m very grateful that I could bring dear friend and awesome lung cancer survivor advocate, Andrea Redway, into the little room to talk with the oncologist about test results. It means a lot to have her ears and wisdom, and know that she will feel free to speak up with questions and ideas. (Of course I ran it by the oncologist beforehand.)

Part of the disappointing news is that there is no news from the blood biopsy that was sent to Canexia lab in Vancouver BC. Just because they didn’t spot any cancer info doesn’t mean there is none present, similar to the way we don’t find a chunk of chicken in every spoonful of a bowl of chicken soup.

My awesome oncologist looked back over several ct scans, comparing multiple scans rather than merely the most recent to the one previous scan. When he put five scans in a row, it became clear that it looks like slowly progressing cancer growing. Disappointing news.

We control what we can control.

There are several potential options to consider choosing. I would love to participate in a clinical trial, but unfortunately the cancer is growing in a way (without “measurable disease”) that does not meet criteria for the trials that we’ve looked into so far. Currently I don’t qualify for any trials that we’ve found. I’m very grateful for the team who have influenced our thinking, including patients, survivors, caregivers, doctors and researchers, very thankful for those who have offered input to guide our choices. My oncologist and I have been communicating with each other, and including the thoughts of other experts.

A big shoutout to Colin Barton and the ALK+ Research Acceleration Committee who are made up of patients, survivors and caregivers. They not only stay on top of cutting edge research related to the type of lung cancer we’re affected by (ALK+), but also drive research. They are a brilliant bunch who also care.

Another big shoutout to our Canadian team of doctors and researchers. Through years of advocacy it has been a privilege to get to know and partner with many top lung cancer researchers, surgeons and oncologists from across the country, as well as around the world.

My oncologist reached out to several people including Dr. Alice Shaw, MD, PhD, also known as the Queen of ALK. Dr. Alice Shaw remembers me as the Canadian advocate who chased her from the escalator and interviewed her for this YouTube video at the American Association for Cancer Research Annual Meeting in Atlanta, 2019. #AACR19

Dr. Ross Camidge spoke to the importance of testing to find the most appropriate treatment. Here he is at an event in April 2019 at The Ottawa Hospital where Dr. Paul Wheatley-Price obtained permission for me to invite people to be part of a special presentation to patients. Dr. Camidge also fielded questions from people across the country who were able to participate remotely. Dr. Christine Lovly is another top ALK doctor/researcher who genuinely cares about people and remembers us. They are part of our lung cancer team, and they are terrific teammates! So very thankful! (I also included a few photo’s below from our ALK+ family summit in Atlanta in August 2019. Such a great gift to be with these amazing people.)

But back to the news… my oncologist has asked a thoracic surgeon at The Ottawa Hospital about doing a procedure to get a biopsy to test. I’m waiting to hear back. Waiting is hard, but we can only control what we can control.

In the meantime, we continue the same course of treatment which is holding back much of the cancer, and we also take symptom management steps ahead. This seems to be a slowly progressing cancer, and being slow is a mercy which we’ll take.

The pain and symptom management clinic at The Ottawa Hospital gave an appointment next week. Research shows that people whose symptoms are well-managed tend to live not only better, but also longer. I’ll take it!

Yesterday morning I presented a White Ribbon to my awesome respirologist, Alyson, who came by to replace the oxygen machine which had started beeping. She has listened to a lot of advocacy talk about lung cancer, is very informed and empathetic. She goes above and beyond. Very thankful for her.

#hope

This just in! A call from the doctor’s office for a phone call appointment to discuss the potential procedure on Friday afternoon, April 29. (I asked and they don’t have a cancellation list.)

Ottawa Lung Cancer Support Group

What is a cancer support group worth? Who can place a value on a group like this? We can encourage each other, support each other, lift each other up. We can help each other know we’re not alone. Together we can hold onto hope. Imagine what more we can do!

Together we are the Ottawa Lung Cancer Support Group. The Jelly Bean Gang. The Ottawa Circle. #LungCancerStrong

Here is how we looked on Zoom today. Due to COVID we’ve temporarily pivoted to the online world. Screenshot at 4:09pm EDT, shared with permission. Look at our faithful leader and all these beautiful lung cancer survivors, one on horseback, celebrating one year since diagnosis. Happy “Cancerversary”! Looking good, Ottawa!

Wouldn’t it be good if everyone affected by cancer had a support group to be part of?

#ResearchMatters

Getting our affairs in order

I’ve heard people talk so comfortably about end of life matters, but it was never easy for me. With practice it’s been getting better.

My parents were both diagnosed with cancer within one week when I was 20, and within a year they had both died. Those were the first and second funerals I went to. Before that time I did not know much about grief except what I had read in books. That was an incredibly difficult season and grief continues, though not like back then. I’m working to prepare my children for life after my death, even though we are holding onto hope that I will live for many more years. We have had some really good and important conversations.

It’s always wise to make sure our will is updated and the other important things are communicated and ordered appropriately, but at times like this we feel the need to be sure all the more. It’s generally best to involve a lawyer. Specifics vary from place to place, but in Ontario Canada, the main pieces are: will, power of attorney for personal care, power of attorney for property.

There are many resources in communities and online to help.

For some time I’ve been connected with Hospice Care Ottawa, and recently have started taking advantage of some of their services. I’ve been meeting with a grief counsellor regularly since September because I was feeling the weight of many griefs, and this has been very helpful. Lung cancer advocacy can be a heavy load. Those who are uplifting and supportive matter so much. They can make a huge difference.

Some of Hospice Care Ottawa’s volunteers participated in an advanced care zoom meeting, which was filled with good information and resources. They invited us to play a “Go Wish Game”, where you choose your top 3 out of 36 wish statements relating to end of life care. It’s challenging to choose only three, but the point of this game is to get people thinking and talking, and that it certainly did. Many others on the call have also found that having these kinds of conversations with family and friends tended to turn out a lot better than they were expecting. There are lots of good resources and great conversations to be had.

My word for 2022 is “rejoice”, chosen before 2022, before my health took a turn. It’s surprising how much joy there can be, even in conversations about end of life issues. It matters to me that people feel freedom to celebrate, not just mourn. We’ve spoken about grief many times. We acknowledge there is and there will be sadness along with a whole lot of different emotions, but there can also be joy and laughter. My desire is that in addition to sadness people will remember and celebrate the good and happy times.

My beloved three children mean so much to me. They have been living with their Mom having lung cancer for over eight years. They were only 6, 10 and 12 at diagnosis. Now they are 15, 18 and 20. We are very thankful for advances in research that have been a big part of the story, keeping this stage four cancer survivor alive all these years. What a difference research and good medical care has made, along with the support of some amazing people!

Our advocacy has been largely about working to extend and improve the lives of people diagnosed with lung cancer or other kinds of cancer. We’ve worked hard to support people and elevate the value of people affected by lung cancer and the importance of research. It is still possible that I can live on chemotherapy long enough for another discovery to be made and become accessible for me. This is what we’ve been hoping for.

This is how we’ve been living for the past eight years since diagnosis. Seven different lines of treatment: four different targeted therapies, radiation, two sets of chemotherapy … when one treatment option failed another one has always become available, sometimes just in the nick of time. Great timing of accessibility has helped keep me and many others alive. This rollercoaster ride has kept me and so many others going, and we continue to hold onto hope.

We celebrate researchers, fundraisers, primary care physicians, counsellors, storytellers, social workers, advocates, nurses, surgeons, administrators, oncologists and anyone who works as a good team member to help extend and improve the lives of people affected by lung cancer. These good teammates need to be uplifted and encouraged because the load can be heavy, the work can be hard. We are so grateful for those who encourage and uplift teammates. Together we can be a good team. We can drive change.

#AdvocacyMatters

#AccessMatters

#ResearchMatters

#ChooseHope

Inside scoop

This is awesome! The Ottawa Senators care so much about people affected by lung cancer that they set aside time to sign a stack of The White Ribbon Project ribbons to give to people newly diagnosed with lung cancer at The Ottawa Hospital Cancer Centre. The Weir family is a major reason that The Ottawa Senators are part of The White Ribbon Project community.

Bill & Lisa Weir have made 400 The White Ribbon Project ribbons and given 370 of them out. They are very generous people who are giving with love, investing their time, talents and resources into people affected by lung cancer. They care. Their family is tremendously supportive. They have three grown children, twin grandsons and one due in July. Lisa is looking forward to turning 60 this year. Big milestones. In May 2020, Lisa was diagnosed with advanced lung cancer. Stage four. Both lungs. She started a clinical trial for her specific kind of lung cancer (KRAS G12C) in May 2021, and it’s working well. #ResearchMatters When she and Bill learned about The White Ribbon Project, they wanted to be part of it and reached out in the very early days to ask about making ribbons. By the end of February 2021 they had made 244 ribbons. Their daughter and son-in-law, Sam and Josh (who plays for the Senators), eagerly jumped on board as did many other family members, friends, teammates and more. What a difference their family and community is making for others. “In this family no one fights alone.” It’s so good to know the Weir family. They are kind people, good, generous and eager advocates, silver linings of lung cancer. Thank you, Weir family and extended community.

Dr. Paul Wheatley-Price is another important The White Ribbon Project community member. He is a medical oncologist who has stepped into an even bigger leadership role at The Ottawa Hospital Cancer Centre, giving out ribbons with love. He knows the story of The White Ribbon Project and the importance of love in the making and giving of ribbons. He understands the power of the Ribbon to gather, unite and uplift the lung cancer community in love. He came over to our home today to pick this new batch up. (Thank you to first born for taking pictures.) He was at the Ottawa Community Ribbon Build back in August 2021, and gave out a stack of ribbons to the newly diagnosed in the Fall and Winter. He has been showing he cares about people affected by lung cancer for years. He has played a key role in advocacy, and is a terrific partner in advocacy. He helped us get the first lung cancer outreach table on World Lung Cancer Day, August 1, 2018 at the Cancer Centre (and has continued to support them), and he helped Andrea and me with the annual patient-driven lung cancer patient summits that we held prior to COVID. Having someone like Paul be part of the team makes a phenomenal difference. Multi-disciplinary advocacy teams are powerful game-changers. Paul is a real door-opener. We are so glad he has taken on this important role with The White Ribbon Project, giving out ribbons with love in Ottawa.

Below are some pictures showing just a small portion of Paul’s tremendous advocacy (over years) for people affected by lung cancer. He is a powerful force.

Paul was part of Ottawa’s community ribbon build in August 2021.

Here is Paul today, picking up ribbons at our home. Thank you, Paul, for consistently going the extra mile.

Home, Emergency again, then Home again

I’m very glad to be home! Got home late Tuesday afternoon (Feb. 15) from hospital, then was admitted back to Emergency on Thursday afternoon (Feb. 17) after chemo but was allowed to come home again later on Thursday (yesterday, Feb. 17).

Tuesday was a flurry of activity to get everything ready for me to go home from hospital. I’m very grateful for all the people who worked hard to make that happen.

We did a blood transfusion and organized home oxygen which is definitely necessary. My blood oxygen drops very quickly without it, but the good news is that is comes back up very quickly with oxygen. My blood oxygen was very low Friday night when I went to emergency, at a level where a person can faint. They quickly got me up into the normal range. My friend Shonna loaned her pulse oximeter to stick on my finger to check at home. It has been showing good numbers for both the blood oxygen levels and pulse rate with the oxygen.

While I was in hospital they ran lots of tests and ruled out many bad things which is such a relief, but they weren’t able to determine the cause of the low blood oxygen. One of the tests they did was a bronchoscopy, and it will likely take a couple of weeks to get all the results back from that. They took samples and are growing cultures to see if there is a treatable infection that we’re dealing with.

I am so very happy to be with my kids. I had left the house on Friday evening (Feb. 11) for a CT scan, then ended up being away four days. I went suddenly to Emergency straight from the CT scan, then was admitted to hospital a couple of days later. I got home late Tuesday afternoon (Feb. 15) – thank you Mieke for the ride, and everyone else who offered – so very happy to be home with my kids. It was good to talk with them and listen to them and just be with them. They spoiled me with cookies and cake and we enjoyed celebrating together.

Thursday (Feb. 17) meant back to the hospital for chemo as usual, every three weeks (cycle #22). This time another lung cancer survivor advocate, Taylor Westerman, was also there. We’d met online and have been trying to connect in person. (He heard about The White Ribbon Project, and I really want to give him a white ribbon, but we haven’t been able to make that happen yet.) I heard a nurse say “Taylor” and it seemed that the guy across the chemo unit looked like the Taylor I’d been connecting with through Messenger, so I called out to him and sure enough, it was Taylor Westerman! It was so nice to see him in person, and when I was leaving I popped over to say a quick hello and take this picture (below), though we didn’t chat for long because I wasn’t feeling well. Notice Taylor’s great tee shirt, and I’ve got a LUNGevity HOPE pin on my lapel. Lung cancer awareness happens 24-7, 12 months a year!

After chatting with Taylor, I paused to say a very quick hello to the awesome clinical trials nurses who took such good care of me when I was on a life-extending clinical trial for the investigational drug “Ceritinib” from 2015-2017. (The trial was testing to see how effective it is when taken with or without food.) I am so thankful for that trial which not only kept me alive until 2017, but long enough for more new drugs to be approved and accessible here in Canada, drugs that are keeping me alive today.

I planned to head home after briefly chatting with the clinical trials nurses but they noticed I was looking puffier than usual. They asked a few questions and before you know it they got together a bag of snacks (big thank you!) and a wheelchair for me to be wheeled to emergency, treated with IV drugs and observed for a few hours. The good folks in emergency wanted me to stay overnight, but agreed to let me go home. Mieke kindly came to pick me up and take me home again. The traffic was terrible, the weather was awful, but Mieke drove very carefully and got us both home safely. Thank you, Mieke. Thank you also to other friends who offered to drive.

So I’m home again, again, and very grateful. Also extremely tired, thanks to the double whammy of chemo and Benadryl. I can barely keep these eyes open so hope this post makes sense. Special appreciation to the oxygen people. Also to my awesome oncologist who happened to be on call the week I was in hospital. He’s only on call about three times a year, so this was a huge gift for me. I also am grateful for a neighbourhood connection with the very nice family doc who was working on the floor. When she mentioned that she teaches family docs and med students I went completely into advocate mode and steered the conversation. She told me she had been in contact with another lung cancer advocate in Ottawa. Andrea Redway had already reached out to her. Way to go Andrea! Andrea is awesome! I made sure the doctor knew it, and encouraged her to reach out to either of us anytime. Then after the doctor left I messaged Andrea to tell her that I had also met the doctor. It’s so good to be part of a team. Very grateful for Andrea and others like her who share the load. The more we work together as a good team, the better we’ll all be. #team

Very grateful for people from Parkdale United Church who are bringing us dinners: yesterday, today and tomorrow. Three meals every chemo cycle makes our lives so much easier. Thank you! #team

Also a big shout out to Hospice Care Ottawa for delivering a lovely care package (photo below) on Thursday (yesterday) with a homemade valentine’s day card from a local school and some snacks. Very thoughtful!

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!

RIP Kim MacIntosh, Lung Cancer Survivor Advocate

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

Kim’s obituary can be found at this link.

#hope #team #gratitude

Our ALK+ Family Summit July 31 – August 1

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.

www.thewhiteribbonproject.org

Quick update

A quick update to let you know I’m doing well, and I hope you are too. I’m enjoying this beautiful summer, spending some time with friends, doing lots of jobs around the house, and loads of lung cancer advocacy.

Very thankful that the chemo is working. Twelve rounds since November 2020, and I’m feeling well, better every round. So very thankful, and holding onto hope.

If you’re facing chemotherapy and feeling nervous, be assured that chemo today is not like it used to be, not like the movies have portrayed it. Many people never lose their hair, and there are great new drugs to deal with nausea. It’s much more effective now, and much less toxic. Cheers to researchers! #ResearchMatters

Cheers to everyone who has ever gone through chemo, or supported someone going through chemo. #SupportMatters Being on chemo can be a mental / emotional battle as well as a physical one. It makes a real difference to receive kindness and care. We all need support and encouragement.

A big shoutout to my great care team, including the nurse who found a vein on the first poke today. That’s always good! My oncologist is kind, humble, wise, hard-working, and a great oncologist. So much to be thankful for.

Shout outs go to researchers and all who work to make the world a better place for people who are affected by cancer, whether it’s awareness, early detection, biomarker testing, treatment, research, survivorship…

Sending love out to all who care about and support me. It means so much. Thank you.

#TheWhiteRibbonProject now has our website up: TheWhiteRibbonProject.org

#thankscoach

#12rounds

#grateful

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! 😀

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