No news isn’t always good news

Time for an update about my health in general. Many of you have reached out to ask how I’m doing, some of you have told me you’ve been wondering but haven’t wanted to ask. I’ve received so many messages that I haven’t respond to most of them. I’m very grateful for the care.

Unfortunately there isn’t any more news from the testing done while I was in hospital last month. I’m on oxygen due to shortness of breath, and we don’t know how to treat whatever is causing the shortness of breath. The hospital tests ruled out major things like cancer, heart issues, fluid build-up, blood clots, several infections. We ended up with an uncomfortable mystery.

Obviously breathing really matters, and not knowing why a person’s blood oxygen level dips so low is not good news. We would really like there to be better news to share with you, but right now, sadly, there isn’t.

So for now we will hold onto hope and stay the course with the current treatment while looking into other possible treatment options in case this may be caused by cancer growth (which it might be, though the scans do not clearly show this). There are no clinical trials that we know of that could be a good fit for someone in my situation right now. (If you are in Canada and looking for a clinical trial that might be a good fit for you, you can connect with the Clinical Trials Navigator who is there to help you! Canadian Cancer Clinical Trials Navigator: https://3ctn.ca/for-patients/clinical-trials-nav/ )

Since starting on chemotherapy in 2020, each scan has led us to believe that the cancer is either stable or smaller. We continue to believe that the current treatment is effectively slowing the cancer’s growth (even if not fully abolishing it), so it’s definitely better to continue than to stop. We will go ahead with chemotherapy number 23 tomorrow, do more testing (bloodwork to be done on Monday and sent to Canexia in Vancouver BC Canada), and hold onto hope.

(One of the ways I hold onto hope is to pray, another is to read the Bible, another is to listen to wise friends.)

Fellow lung cancer survivor Taylor and I plan to connect tomorrow morning. (We met in person last chemo and get chemo on the same three-week cycle at The Ottawa Hospital.) I’ll go in a little early to get to see him and give him a white ribbon www.thewhiteribbonproject.org . The White Ribbon Project connects people affected by lung cancer worldwide, and is helping to draw people into community locally also. The power of the white ribbon. How good is that!

You may have noticed I’ve been a little less visible on social media in recent weeks. Yesterday after the port insertion I missed out on uplifting and honouring amazing women for International Women’s Day #IWD2022.

Honouring and uplifting people is good to do every day. Since I didn’t yesterday, today I’m sending out a big general cheer for the women who do tremendous work in the cancer advocacy landscape (too many to name individually, so I’ll name some of the organizations where we may have worked as teammates together): CCTG, 3CTN, OICR, CCS, IASLC, ILCF, LCC, SU2C, LHF, CCSN, CAPO, IPOS, CADTH, TOH, CCMB, PMH, CIHR, LUNGevity, GO2, LuCE, ALK+, AACR, ASCO, … (+ numerous other advocates who have inspired outside of these organizations). What a list! If you are an advocate and there is a way I might help you connect with some amazing teammates in any of these organizations, please feel free to ask. Connecting and uplifting people is a passion. #team

In the pictures above are just a few of the amazing women (and some men) who have inspired many of us. (These are pictures I could quickly find and put on my blog tonight.) So many are not pictured above, and there are very many more to come!

#hope

Noting the unusual

Back in June after a day of fierce gardening, I noticed that there was a bit of dirt in my bra and that the skin of my left breast looked a little unusual. I didn’t think much of it, especially since this chemo gives me a rash sometimes, and I take a long time to heal from cuts and skin irritations these days.

After two weeks it hadn’t gotten better. In fact it was a little worse. I know that it is possible to have more than one kind of cancer at a time, and that unusual looking skin could be a sign of breast cancer, so I called my family doctor and got a phone appointment. I then went in for an in person appointment which lead to a mammogram. After the mammogram I was told I’d meet with a surgeon to discuss the possibility of a biopsy.

In September 2021 I had that appointment with the surgeon. It wasn’t until after I was at the appointment in the Cancer Centre that I learned I would have the biopsy that very day. I’m glad I didn’t have a lot of time to think about it! The surgeon was right: this was so much easier than the lung biopsy. Just a steri-strip, and a waterproof bandage that stayed on a week. It healed up very well. I had to wait another week for results. It could have been breast cancer, or lung cancer which had spread, or something else.

I didn’t tell anyone until September, and before publishing this I had only told a handful of people, including my kids. I’m not sure why. I think maybe because there has been so much grief and uncertainty in the world, and I did not want to add to it unnecessarily.

As I’ve reflected on it, I’ve had a growing conviction that it’s important to talk about it. I want to tell you now because early detection matters. It matters that we pay attention, and when we notice something, it matters to go to the doctor. Lung cancer doesn’t usually give the opportunity for an earlier stage diagnosis, but many other cancers have much better odds. We need to pay attention and if we notice something unusual, we need to act on it.

Early detection matters

I’m very happy to say that they didn’t think it was cancer back in September, but they have continued to follow it since there was a possibility that it was a rare disease, but just this past week the surgeon said it seems to be after-effects from the radiation done in October 2020.

Good news! I didn’t realize how much stress I had been carrying about that until I received this news and noticed my body relax. I’m very thankful and want to share that good news with you.

Thank you for journeying with me and for so many uplifting messages. I’m humbled by the ways so many people care, show kindness, pray… many people have said they pray daily for me. It makes a difference. So much appreciation, so humbled … thank you!

Port Insertion Update

Quite a few people have asked about the port, so it’s probably time for an update.

First, there are no substantial health updates. I continue to be very thankful for and doing well on oxygen while waiting for test results.

The port insertion was initially scheduled to take place last month, but was cancelled because I was in hospital. Good news is that my hard-working oncologist put in another request and now it’s rescheduled for next week!

The procedure takes about three hours, and no food or drink is allowed from midnight the night before. The mother of one of my dear friends from high school is generously driving me to and from the appointment.

People keep saying how much easier the port made things for them, so having the port definitely sounds like a good choice. I’m a little nervous about the actual procedure, so would welcome prayers and good thoughts for Tuesday morning, March 8th.

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!

Compassionate and Skilled Care

I’m taking a moment to let you know that chemo #21 went well yesterday. My nurse was very kind, caring and skilled. She never mentioned that she was overdue for her break; she did not rush or complain. (I only knew about her break since I overheard someone else quietly mention it.) She spent over an hour warming my arms and carefully searching for a vein. She ended up finding only one, in the same spot where it worked last time. Thank you to those who prayed and sent good thoughts. She got it on the first poke! Thank you also to those who suggested good ideas like warm blankets and smaller needles. The nurses are very skilled and use those great strategies. I used to have great veins early on in treatment days, but not so much lately. Eight years of constant treatment takes its toll. While we survivors are very glad to be alive, survivorship can bring challenges.

I’m very thankful to be scheduled to get a port early on the morning of February 17, before chemo #22. The nurse should be able to use it for that chemo the same day. If all goes well, no more hunting for veins for a long time! It’s such a relief that busy nurses won’t have to spend so much of their time to insert a needle.

My oncologist, Dr. Nicholas, came to see me at chemo. He is very kind and hard working. The nurses also appreciate him and recognize that he is caring and compassionate as well as up to date with the latest research. We didn’t take a picture, but The Ottawa Hospital has posted at least three larger than life pictures of Dr. Nicholas with a fellow cancer survivor at the General Campus, so here is a picture of one of their pictures.

Compassionate and skilled care makes all the difference.

#grateful

That was quick!

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!

Keeping Perspective and Staying Thankful

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.

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!

Grateful

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!

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