Celebrating Victories

How much it matters to celebrate even the small victories! Especially during tough times, we celebrate progress, we celebrate little wins, we celebrate each step on the path toward our goal.

Many of you know I’ve been working on walking more and it has been challenging. Ever since I was in hospital for shortness of breath in February, and even before then, shortness of breath has at times made it challenging to walk even a couple of steps. I’ve set out chairs in my home to help me make it from room to room. Our home is not large, but there were times I could not walk to the next room without a rest to let my blood oxygen levels rise – even while on oxygen.

I walked in the house with oxygen very slowly, and aimed for a six minute walk each day initially. Often I had to rest more than once during the six minute walks. Eventually the length of walks could increase with fewer rests. The whole time, the goal was to keep my blood oxygen level between 91 and 95%. Often it would dip way down in the 80’s very suddenly. Sometimes even to the low 70’s. Not good.

My treatment breaks seem to be doing good for this body so far, and we are very grateful and quite excited about this – about being alive. To be real, it seemed that I was very close to death for a couple of months. Quite a few people have said they thought so, including my palliative care doctor.

I’m doing better in general, and even on lower oxygen levels in recent days. So very thankful!

I’ve been walking up and down on the street for a few months, with a walker or carrying my oxygen tank, or pulling it with a little cart. I’ve worked on lengthening these walks, and have been able to walk to the end of the street and back most days recently.

Yesterday, with the support and encouragement of my kids, we walked around the block together. Two of them were with me, and they said (if needed) one could run back and get my walker while the other stayed with me. One carried my oxygen tank and the other helped watch my oxygen monitor. Together we made it all the way around the block. First time in over six months!

Those of you who know where I live will tell you it’s not a long distance, not a big block. We still celebrate small victories, and this one felt really big. You are invited to celebrate together with us! I was tired today, and just walked up and down the street this evening, but yesterday, together we proved that I am able to walk all the way around the block. Gosh it felt good!

We don’t have cures for lung cancer the way we would like yet, but more and more treatments are being developed and getting approved. We celebrate the small victories on the path to cures.

One of my doctors said they don’t understand why I’m doing so well on this treatment break. There is so much to learn about cancer and treatments, and people’s responses to treatment. Did my body kick into gear and start fighting off the cancer? That was this doctor’s theory, based on over 20 years experience with people affected by different kinds of cancers. I don’t know why my scans are looking better and I’m feeling better, but I’m giving thanks for this beautiful good gift of extended life.

Here’s a big shout out to those who speak encouragement into my life. You make a world of difference. Thank you from the bottom of my heart. Cheers to you! You are helping to keep me going. Encouragement and support really matter.

Cheers to the researchers, doctors and teams who are working for better, longer lives for people affected by cancer! I know for a fact that doctors are cheering for their patients and very happy when we do better. When you get the opportunity, please say encouraging words and thanks to people who encourage and care for people. Please support and encourage and thank those who research, who work very hard for small victories, with hope for effective treatments and cures. So much gratitude and hope!

Those of you who are following this story and cheering for health improvements … please join in and celebrate this victory!

#gratitude

#hope

#treatmentbreak

#chemo

#targetedtherapy

#cancer

#lungcancer

Steroids

Dexamethasone, a.k.a. decadron, is a steroid commonly used by many people for many health conditions including cancer. I’ve been taking it in various doses daily since my hospital stay in February, almost six months ago. Something very important about this drug is to not suddenly stop taking it. It is critical to taper down before stopping. My care team has been working to find the best dose for me, and in process I’ve learned a few things.

First, can you tell these two pills apart?

If you look closely enough, yes you can, but don’t they look very much alike? These are both the same drug, but one is 4 mg and the other is 0.5 mg. How easy would it be to make a significant, health-altering mistake?

Dexamethasone is a steroid that people frequently vary the dose of, so often have both 4mg and .5 mg pills in their home, and frequently need to cut the 4’s in half. One of the two main issues I’ve bumped up against is how similar they look. It is possible to tell them apart, but very challenging. If you’re taking 3mg, for example, you would cut a 4 in half and add two .5’s, but if you accidentally got that backwards, you would ingest 8.25 and that could really hurt a person. The second is that it is very difficult for the ordinary person to break one in half. These seem like simple fixes with a design change on the 4 mg pill.

I’m feeling a little more energized and today I reached out to a dear friend who has a good friend who is a pharmacist to ask for contacts and advice on how to proceed it I’m seeking to drive change here. I don’t know how much energy I have for this, but could perhaps send an email.

Also really want to give a shout out to my pharmacist at the Glebe Apothecary who cut a whole bunch of 4mg pills in half for me last time I had the prescription filled. I asked about the cost of the pill cutter, but chose not to buy it, and when my pills were delivered they came like this. Such a good gift! This makes taking 2.5 mg daily so much easier! Very grateful.

#hope

#advocate

#living

#steroids

#decadron

#dexamethasone

#pharmacist

#pharmacy

Advocacy highlight

One of many advocacy highlights happened at the AACR Annual Meeting in Atlanta in 2019. I was at the Convention Center, working on a presentation about immunotherapy for the Scientist <–> Survivor Program, while hanging out with several people, including Rhonda Meckstroth and Chris Draft. Chris knows just about everyone, and was talking with many of the researchers who were passing by there. He introduced some people to us, especially if they would be good people to interview about immunotherapy. Chris is a great connector and loves to share his resources with others. The lung cancer community has benefited so much from him. He’s always available to us.

Suddenly Chris nudged me and pointed to a small crowd walking by. In the midst of this crowd was a man who looks kind of like your stereotypical scientist. He looked very familiar to me. He looked very much like Dr. Jim Allison, Nobel Prize Laureate for his work on immunotherapy. I felt very excited and very shy. I asked Chris if it was really him. Yes, it was. (Of course it was – he was there presenting.) I wondered if I should go talk with him. Yes, I should! I went running after his entourage and tried to get through the crowd. They weren’t letting me, but when Dr. Allison heard that I was a lung cancer survivor advocate, he told them it was ok to let me in. He warmly welcomed me into his circle and a big wave of gratitude washed over me for this man and his team who were history makers, who had changed so many people’s stories and extended so many lives. I was very excited to be able to tell him that he had made a huge difference for the lung cancer community, saving many lives including some of my friends. I thanked him on behalf of the lung cancer community, telling him we were very grateful for him and his team. Expressing gratitude matters

#gratitude

#hope

Please note: some of my previous posts have not been saved as expected, so keeping this blog updated has been challenging. Also, a fairly recent post published before it was intended, so many edits were not made. The main correction to make clear is that we are not stopping treatment, just taking treatment breaks.

Recent Health Updates: Exercise

I had a PET scan, and appointments with my family doctor, thoracic surgeon/respirologist (who may do a biopsy) and oncologist recently. Good news all around! (Which may not be 100% precisely accurately remembered / communicated here.)

First of all, you may already know this bit of background I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so we radiation on those pesky spots, but that didn’t work as well as we’d hoped it would. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed (IV chemo). This continued for 24 cycles, but in February 2022 I was admitted to hospital with shortness of breath of unknown causes. In Spring 2022 the experts determined that I was doing very poorly, likely due to the Pemetrexed, and stopped IV chemo for a treatment break. I continued on the Lorlatinib, but after an appointment with my oncologist very recently, we have decided to take a brief treatment break to see how I do on no treatment for a little while. Please note: these are just treatment breaks. 

My family doc has agreed to look into what may be causing the shortness of breath, since it’s not necessarily cancer, which is great news! My oncologist also is referring me to a specialist who may be able to help with this.

The thoracic surgeon / respirologist said the PET scan revealed there is a small spot which may be measurable disease that he can easily biopsy if needed for the clinical trial. He also said that shortness of breath is natural since my lungs have much smaller capacity because of the scarring from cancer, the treatments, pneumonias, etc. This could have been discouraging, however when I asked what I could do to maximize what I’ve got and live as well and as long as possible, his answer was inspiring! This expert said that exercise makes a difference. Exercise is helpful – even when suffering from shortness of breath and in need of oxygen – and will influence all aspects of health. It doesn’t have to be at the pace that we might think. He encourages, for example, walking at a slow pace where we can still have a conversation with a friend and breathe. It matters that we keep pushing ourselves, at a slow pace, and it will help us to live longer and better.

Survivorship can be challenging. We need to remember that we are stronger than we think we are and by pushing ourselves a little, at a slow pace, and asking our friends to support and encourage us, we can potentially live longer and better.

Very grateful for Andrea Redway, for coming with me to the thoracic surgeon and also taking notes! (Everyone needs support and an advocate.) Still grateful for the cake made and brought by the awesome Vanneste sisters back in 2017 for our outreach table for World Lung Day. What a great surprise and generous gift that was! August 1 is World Lung Cancer Day. What is your Cancer Centre doing to celebrate?

#hope

Also very grateful for the ALK group who hosted a zoom call recently with people from Nuvalent, the biotech company developing the drug that I’m hoping to gain access to, potentially through upcoming clinical trial later this year. (Very grateful for Nuvalent.) One of the things I love about this trial is that the team has worked very hard to make it as accessible as possible to as many people as possible. So, for example, you can have had multiple prior lines of treatment. You could be 107 years old. You could have ALK cancer, but not specifically ALK lung cancer – even rarer. You can even live in Ottawa Canada.

(Note: most pictures here are pre-COVID.)

Jill’s Hope Mango Smoothie Recipe

Choose hope

I’m excited to share this recipe with you because this has been my favourite smoothie for many years. When swallowing was challenging in the winter of 2020-21, I was not even able to swallow this smoothie. I did some tests, then some exercises given by Emilie (pictured below), a lovely Speech-Language Pathologist. (Those who are interested can read more here: https://throughthevalley.ca/2021/01/20/health-and-advocacy-update/.) Swallowing improved and has been good ever since. For some time I’ve been able to eat just about everything. I still really enjoy this smoothie and want to share the recipe with you. Thankful!

We can go through times when it’s hard and we can start imagining that things will only get worse, but that’s not necessarily true. We can ask for help. Things can turn around. We can choose hope and hold onto hope!

Jill’s Hope Mango Smoothie Recipe

  • Approximately 1/4-1/3 cup of mango
  • 3-4 celery stalks, chopped
  • 1 Tablespoon peanut butter
  • 1 scoop plain protein powder (unsweetened, unflavoured)
  • Milk to fill it to the max level

Blend it all together and enjoy!

Keep holding onto hope!

What is your cancer centre doing for World Lung Cancer Day August 1?

#TheWhiteRibbonProject www.thewhiteribbonproject.org

#hope

Presenting at ASCO (American Society of Clinical Oncology)

Presenting at ASCO, the world’s largest cancer conference, was a great opportunity to strategically represent lung cancer survivors and cancer survivors worldwide.

It was a terrific experience, so good to work with awesome co-presenters and bring significant contributions along with them on our panel discussion:

Where Do You Go When You Put Your Best Foot Forward? Challenges After Upfront Use of Next-Generation TKIs in Driver-Mutated NSCLC. We gave a 60 minute panel session during which we discussed cases in an interactive manner with the audience. Here is the multi-disciplinary team:

ModeratorLyudmila Bazhenova
An International Academic Oncologist PerspectivePilar Garrido
North American/Community Oncology PerspectiveMakenzi Evangelist
A Patient PerspectiveJill Hamer-Wilson
A Radiation Oncologist PerspectiveMatthias Guckenberger

As far as we know, only two lung cancer survivor advocates presented at ASCO, and this is the first panel discussion with a patient/survivor/caregiver advocate. Here is a tweet from our moderator:

I echo our moderator’s Tweet: Great job, ASCO! Thank you for including this survivor advocate as a co-presenter at #ASCO22! May there be many more of us to follow! Well done, team! Thank you for caring about your patients. A real pleasure to present with you. An extra big thanks to ASCO for changing things up to including me in an online format when health would not allow me to present in person. This shows that ASCO values the survivor voice. #grateful

Here are some of the things we spoke on … biopsies, holding targeted therapy during radiation, questions about increased toxicity with potentially no clear benefit, different kinds of lung cancer like ALK, EGFR, EGFR C797S …

Before the presentation, I reached out to some people affected by lung cancer from here in Canada as well as the United States and around the world to bring their input into the presentation, to be able to represent them as best as possible. They brought a lot of good input, and the time was definitely too short to say it all. Here are a few of the things I said …

Each patient is unique, and every patient-doctor relationship is unique. I urged oncologists to not make assumptions (e.g. that we can’t afford it), but instead to ask questions, discuss options with us. Please inform us of the pro’s and con’s. Empower us to make good decisions with you. And always be empathetic, because getting a lung cancer diagnosis can be traumatic.

Here is the link if you’re interested: https://meetings.asco.org/2022-asco-annual-meeting/14236?presentation=205915#205915https://meetings.asco.org/2022-asco-annual-meeting/14236?presentation=205915#205915 You may need to sign in, and I think it’s free for survivor advocates but I’m not sure about others. You may have to ask the good folks at ASCO and I’m sure they’ll help you out.

A number of cancer researchers and organizations are working on figuring out how to engage with people affected by cancer. Some are effectively including patients/survivors/caregivers at the table. This is best practices.

Many of our advocacy efforts have been about strategically creating pathways to make it easier for others to also do advocacy. Two lung cancer survivor advocates presenting at ASCO this year? Let’s work for many more in years to come!

#hope

#pathways for advocacy

#strategic

Together with some terrific panel members, we’re presenting at ASCO Tuesday morning

ASCO, The American Society of Clinical Oncology Annual Meeting, is the world’s largest cancer conference, and it’s happening now, in Chicago and also with online sessions. This year’s theme is: Advancing Equitable Cancer Care Through Innovation #ASCO22. You can check out the program, which features over 200 sessions, here. The online platform includes 85 livestream sessions and more than 2,500 poster presentations.

Our session is Tuesday morning: Where Do You Go When You Put Your Best Foot Forward? Challenges After Upfront Use of Next-Generation TKIs in Driver-Mutated NSCLC. We have a 60 minute panel session during which we will discuss cases in an interactive manner with the audience. For example, we’ll have Question and Answer, Multiple Choice Questions for the Audience, and a “Likely Scale”. Should be fun! Here is the team:

ModeratorLyudmila Bazhenova
An International Academic Oncologist PerspectivePilar Garrido
North American/Community Oncology PerspectiveMakenzi Evangelist
A Patient PerspectiveJill Hamer-Wilson
A Radiation Oncologist PerspectiveMatthias Guckenberger

Last Fall when I said yes to this exciting opportunity, the ASCO organizers emphasized that it was important for all presenters to be physically present in Chicago for ASCO, but since my health declined I’m now unable to travel. I reached out to the ASCO team to ask if it would be possible in this case to present virtually. Very grateful that the ASCO team highly values the survivor advocate perspective and is willing to work for a process for virtual participation. It’s great to have good teammates!

Speaking of good teammates, a big shoutout to Chris Draft who has been making The White Ribbon Project Ribbons and delivering White Ribbons in multiple languages to many people at ASCO this year, including some of my co-panelists. Thank you, Chris and Team Draft!

#ASCO22

#ResearchMatters

#hope

#targetedtherapy

#nsclc

#lungcancer

#ASCO

#team

#survivorship

#grateful

#chicago

Happy Cancer Survivors Day! advocacy + brief health update

Happy Cancer Survivors Day! Cancer affects so many of us, whether directly or indirectly, and it’s exciting that right now the biggest cancer conference in the world (ASCO) is happening in Chicago and online because more research means more survivors and better survivorship.

There is much talk of new treatment options and potential cures, and I can’t tell you how thankful we are for research and all involved in the research process. Just over a week ago, terrific Canadian ribbon makers, Lisa and Bill Weir and awesome advocate Chris Draft and I were representing The White Ribbon Project, speaking to a group of the lung team members from a pharma company, communicating how thankful we are for the research they do, and how important research is to the lung cancer community. What a difference research makes! #ResearchMatters

This pharma company team did a terrific job all around. They were well-organized and effective communicators who sent a thoughtful and well-written thank you email afterwards including promises of ongoing partnerships. What a great day! The pharma company teammates made White Ribbons together with those three team members from The White Ribbon Project who were able to go in person and be at the same place to make ribbons together. I would have travelled there too had I been able, but instead very thankful that they effectively set things up so I could speak online.

Speaking of my health, I’m still on oxygen and we don’t know why there is still shortness of breath.

Dr. Nicholas, my oncologist, suggested it could be good to take a break from chemo to see how my body responds and also the cancer. Last week’s CT scan showed that the cancer remains stable or improved – great news! I still have shortness of breath, but most days am feeling much better, so that’s a real plus.

Dr. Nicholas has been working on discerning a good path forward. I may be able to participate in a clinical trial which may start in Toronto in the Fall, but there are still more hoops to jump through before this can happen. I’m very thankful for Dr. Nicholas who works very hard for his patients.

Celebrating cancer survival together with the awesome Andrea Redway on her seventh cancer-versary! Over fifteen years of survivorship (and two metres) between us!

Andrea (above) is also a patient of Dr. Nicholas. Here she is, celebrating her seventh “cancer-versary”, also on the same day as the ribbon build! When she was first diagnosed, the cancer had already spread through her body and she was very close to death. She and her husband advocated for her to get the life-extending surgery she needed, and a less experienced surgeon was willing to do it even when a more experienced one was not. Together with Dr. Nicholas, Andrea and Michael looked possible treatment options and talked about immunotherapy back in earlier days when it was not so common. He was quick to get the paperwork done and Andrea is alive and doing well seven years later. She is an amazing advocate and we are so very grateful for her and the good care she has received.

It matters to keep holding onto hope and continue advocating for more research and for advances in research to get to people who need them. Researchers are working hard to find cures. Research advocates have an important part to play, representing survivors, patients, their family, loved ones, and the public. It is important that we are trained and well educated so we act like professionals and work effectively.

Another meeting I got to be part of that same day was with the team that is working on Canadian Cancer Clinical Trial Network’s (3CTN) Precision Oncology Map that some of you may know about. Last Fall the Canadian Cancer Clinical Trials Group earned the Bayer Precision Oncology Patient Innovation Award grant of $25,000 and is using it to improve clinical trials for people living with cancer in Canada. 

This team has been working to develop a map of all the Canadian cancer clinical trials so that patients, caregivers & clinicians can more easily find suitable trials and researchers & sponsors can search for gaps where more trials are needed. We are still looking for feedback on how user-friendly the current test version is, and if you are interested, you are welcome to help.

If you would like to look at the map and potentially give feedback, please click on the link below and explore the map, then send a brief email info@3ctn.ca with your thoughts about strengths, weaknesses and suggestions for improvement. Precision Oncology Map: https://app.powerbi.com/view?r=eyJrIjoiNmM2MmE0NmQtMGI5OC00NDdjLTgxMzMtM2ZmNzQwYjRkMjM3IiwidCI6IjlkZjk0OWY4LWE2ZWItNDE5ZC05Y2FhLTFmOGM4M2RiNjc0ZiJ9

Below are some pictures from that awesome build mentioned above. Thank you to Lisa and Bill Weir (with the great tee shirts), Amy Hayes, Lorraine Hudson, Grace Oha, Lung Ambition Alliance, AstraZeneca and the awesome advocate and photographer, Chris Draft. Great day! Thanks also to Heidi and Pierre Onda, founders of The White Ribbon Project.

Bill and Lisa Weir, Lorraine Hudson, Amy Hayes, Grace Oha

#hope

#The White Ribbon Project

#lungcancerawareness

#sensibilisationaucancerdupoumon

RIP Brigitte Levigne

It is with profound thankfulness for her life and advocacy, and with deep sadness we share that our dear friend and lung cancer sister, Brigitte Lavigne who is also known as B or Bee Thevine, passed last week. She and her dear friends and family have participated in lung cancer advocacy, including making ribbons as part of The White Ribbon Project and supported others of us affected by lung cancer. They have been awesome supporters and advocates. Brigitte was one of my big encouragers, and I know many other members of the lung cancer community would say the same. We are so very grateful to have known her, and to have connected with her community.

Brigitte loved Easter. Last Easter she gave me flowers and a card. She gave so much joy. She was a silver lining of lung cancer for very many of us.

Here is her beautiful obituary (pasted below):

Obituary of Brigitte Lavigne

Peacefully on Thursday, April 14,2022 surrounded by her family at the Ruddy Shenkman Hospice, Brigitte leaves behind her caring and supportive husband, Kyle, beautiful and courageous children, Kiera and Liam, wonderful brother, Ben, attentive sister-in-law Laura, lovely niece, Simone, loving parents, Michele and Ron, gracious parents-in-law, Brian and Janet, and thoughtful sister-in-law, Kathy.

Brigitte is ever so grateful to her strong community of friends, colleagues, and neighbours, who accompanied her and her family during these difficult times and throughout her life.

She will be missed by her strong and influential besties from Montreal, the poker princesses, University friends, the Bel-Air babes, her training partner and the girls from Toronto and PEI. These friends helped shape Brigitte in more ways than they could know.

Her amazing medical team was held in high regard. Compassionate and caring  oncologist, Dr. Nicholas, kind and concerned respirologist, Dr. Graver, palliative care doctors, supportive family physician Dr. Bordeleau, home care nurses, specialists, hospice caregivers. Brigitte benefitted from specialized care at the Ottawa General Hospital Cancer Centre, the IGFCC, and was regularly seen at the Queensway-Carleton Hospital. She had nothing but positive words about the medical care she received and referred to them as her dream team.

A loyal public servant who dedicated her career to public safety, Brigitte enjoyed running, spending time outdoors, engaging with people in her community and being a mom. Her children were the centre of her universe.

Brigitte was supported by a strong network of lung cancer sisters whom she fondly spoke of as her sisterhood. She learned about advocacy and was actively involved in The White Ribbon Project, participated in cancer patient research, donated her cells to a cancer line project and was a member of the ROS1ders. 

Brigitte was honoured by the ICAN International Cancer Advocacy Network through the Brigitte Lavigne Research Advocacy Program (Rare Resistance Mutations) to promote resistance research.

In lieu of flowers, please consider donating to the ROS1ders, Please click Here or the Ottawa Race Weekend Team raising funds for Lung Cancer Canada in honour of Brigitte,Please click Here

A private gathering will be held for family. A Celebration of Brigitte’s Life will be held at a later date.

To express your condolences or make a donation please visit http://www.hillcrestfuneralhome.ca

A Tree of Remembrance for Brigitte will be planted at the McAlpine Forever Forest, Vankleek Hill.

Funeral arrangements in care of Hillcrest Funeral Home Ltd., 151 Bond Street, Vankleek Hill, ON K0B 1R0 (866) 678-2002.

The picture above is from when I first met Brigitte in person and was privileged to give her White Ribbons with love. Right from the start she wanted more than one so she could also give Ribbons with love. This picture was taken before she was ready to publicly show her face or share her name, March 17, 2021.

Some of the pictures below are from our Ottawa Community Ribbon Build in August 2021, when Brigitte and her good friend, fellow advocate and The White Ribbon Project teammate Jesse, and her two children came to work on Ribbons. Brigitte loved all her people, but her children especially meant the world to her. We were so glad they could come to the build and we could meet them. It was great spending time with them and Jesse that day, as well as Brigitte. Brigitte gathered a community of amazing people, and spoke often of her family, friends and community. Other pictures are from a later date when Brigitte came over to put labels on and receive more Ribbons to give away. The day of the Ribbon build was so hot and humid that the ribbons showed no signs of drying anytime soon, so we had to be patient. It brought Brigitte so much joy to put on French labels. She knew that The White Ribbon Project is about love, that ribbons are given with love and received with love and that language matters. This was a good fit for Brigitte who was bilingual. She loved and advocated in more than two languages.

Brigitte activated a team who rose up doing advocacy. Even in this last month, Brigitte and her team did powerful work, delivering The White Ribbon Project Ribbons to our hospital and cancer centre in the west end of Ottawa, where she received much of her care, where I received my first rounds of chemotherapy back in 2013 and 2014. She participated in as many The White Ribbon Project community zoom calls as she was able, and yearned to be part of them when she wasn’t able. She and her team have made and will continue to make Ribbons. So far they have made 24 and 6 more are in process. They have given 20 of these ribbons with love, in addition to the several Brigitte was given by me. She also received a special honour with a named program that would focus on Research Advocacy on Novel Therapeutics for Resistance Mutations, i.e. a Brigitte Lavigne Research Advocacy Program (Resistance Mutations in Rare Cancers). She kept advocating until she could not any more, and she died knowing her community would step further into advocacy.

She powerfully loved people her whole life, and that did not change after her lung cancer diagnosis. A cherished member of our Ottawa Lung Cancer Support Group, she reached out with love to members of the lung cancer community locally and all over. She cared about people with her specific kind of lung cancer, and people with any kind of lung cancer. So many people talk about the difference she made for them. She loved us and she messaged us so much! She also loved her care team, spoke highly of them and thanked them. She made a special presentation at the West end hospital where she received much of her care and they did a special story about her. She embraced the inclusive nature of The White Ribbon Project, and gave Ribbons to a wide variety of people connected to lung cancer in various ways, including members of her care team. Even in the short time I knew her I could see that everywhere Brigitte went she brought joy and love. I’m so thankful to have met her, loved her and welcomed her into the lung cancer community. I’m so very thankful for our oncologist who encouraged her to connect and told her about our support group.

Port update and today’s advocacy highlights

Several people have asked how things are going with the port, so it seems good to tell you that it’s going well! I’ve had chemo through it twice now, and having it changed the whole flavour of the chemo appointment. Instead of wondering with some measure of dread how many pokes would be required before success, each time the nurse had success on the first poke. Such relief! No more heating of the arms, no more slapping or pressing in search of sneaky veins. Both times the nurse simply inserted the needle into the port and all was well. Such relief!

Full disclosure: it hurts a little when the needle (for chemo) goes in. But so much less than when the nurse has to poke around for the vein. There are several pain relief options which could be used. Also, the phlebotomists at the Cancer Centre lab need to poke for blood draws for the blood test that we do every 24-48 hours before treatment, since they are not authorized to use the port. Blood draws don’t tend to hurt, and usually work on the first attempt.

Advocacy highlights: Great day today! Two significant conversations this morning to tell you about: one with someone diagnosed with lung cancer looking for support. She is interested in doing some advocacy also. The other with another person diagnosed with lung cancer who has set up a meeting for us with her MP to attempt to move access to Lorlatinib further forward. We spoke this morning to discuss strategy and make specific plans for this upcoming zoom meeting. I really appreciate being teammates with people who care and who appreciate the value of being part of a good team. Advocacy and life go better with good teammates.

Of course there were many more things on the agenda for today, but those are two being highlighted for today. Those and also this lovely card which just arrived from Martina, another good teammate and fellow cancer research patient representative good teammate. What a treat to receive such a thoughtful gift from a good teammate! #blessed #grateful #team