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!

Scan results

Scanxiety is real… the anxiety many of us can feel around scan time. Most who’ve been diagnosed with lung cancer are on treatment, whether it’s a targeted therapy in pill form, chemotherapy, immunotherapy, or a new kind of therapy devised by researchers to keep us living longer and better. Whether alone or in combination, most are on treatment and get regularly scheduled scans to see if the treatment is working.

Sometimes some get cues that the cancer may be growing or shrinking, side effects that may be indicators, that might give an idea of what is happening inside our body. Often it’s a mystery. Lung cancer can be sneaky.

My 13th round of chemo was on Thursday August 12. I also continue to take a daily targeted therapy, Lorlatinib. This combination has growing popularity with some of the top lung cancer doctors in the US. I’m thankful to be able to have access to both treatments here. Lorlatinib is very effective at keeping the cancer from spreading to the brain. My CT scan was Monday morning (the 23rd), and results just came in: all is stable or slightly better! Such great news when someone gets good scans!

In the past few months, Several dear friends have gone through progression and questions about what kind of treatment path to take forward. Some have faced serious health challenges. These can be scary times. So grateful every time there is good news. We keep holding onto hope for more research to bring more treatment options which will help further extend life. Often there is uncertainty, and it can look like the research may not be keeping up with the need. And then there’s the issue of access: what about people who cannot use a treatment because they can’t get it? Maybe it’s too expensive or not available where they live or when they need it?

Lorlatinib is a drug that has helped keep me alive and living very well for years. I’m very grateful for it and have been working with others for some time to get better access to Lorlatinib for more Canadians. I’m thankful for the compassionate release program from Pfizer which has meant that every month a package of life-extending medicine, probably worth over $10,000/month, is delivered to the door at no charge. This morning, a cheery FedEx employee handed over the small box with a lovely greeting. He had no idea how thankful I am for that delivery.

Very grateful to continue to receive free Lorlatinib and that scans are good. Very thankful for researchers, clinical trials opening space, terrific care teams, dedicated advocates, and hope. It’s so important to hold onto hope.

(Apologies for the older photo’s. My phone is not currently working.)

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! ūüėÄ

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

In the News

A few appointments ago, my oncologist asked if I’d be willing to speak at a fundraiser for clinical trials. I agreed to consider it, and a few conversations later this was on the news:

 

I’m grateful to Patricia Boal, Bryan the camera operator, and the CTV news team for doing such a great job telling¬†the¬†story.

The breakfast is next month.¬†I’m feeling a bit nervous, but I said yes for a number of good reasons and I’m glad I’m¬†doing it. I hope my story will encourage and bring hope to others. I also hope it helps raise funds which will make a difference for many.

I dream of the day IV chemotherapy will be obsolete and cancer will be cured by a few weeks of daily pills with insignificant side effects. I hope it happens in my lifetime!

“How are you doing?”

“How are you doing?” is a question that can be tricky to answer! Obviously the answer depends on a lot of things, including the context: the grocery store clerk will get a very different answer than¬†my¬†oncologist will! Close friends will likely get a much deeper answer than I would post publicly, but sometimes I just don’t feel like talking about it – even with the best of friends.¬†I’m so thankful for all¬†those¬†who understand and encourage, who pray for us (if they’re the praying sort of people)¬†and support us¬†in many ways.

A lot of people are asking how I’m doing on these new meds. So far, this one seems better than the last one (which was much better than the IV chemo). I’m still puffy, but not ballooned-up like before! I’m hardly coughing, and can sing a bit most¬†days! I love to sing, so this is both exciting and bittersweet because I can’t sing anywhere near the way I could before. The joint pain (from going off the previous drug) is diminishing. Nausea slows me down, but doesn’t usually stop me! My digestive track seems to be getting used to the meds, and tummy upsets are decreasing. I continue to experience painful intermittent stomach cramps from around 3:00pm until bedtime. It may be my imagination, but I think it’s better than¬†it was a couple of weeks ago.

One thing¬†that’s hard to figure out is the fatigue. I’ve always loved to push myself to the limits: to do as much as I can without overdoing it,¬†endeavour to reach that line without crossing¬†it! Now I know the line is in a completely different place than it used to be, and I¬†feel¬†grief about my significantly diminished capacity, but what’s tricky is that it feels like someone keeps sliding that line around¬†with no discernible pattern! It’s impossible¬†to know how much I can manage because it varies dramatically from day to day.

I pray and I pay attention, trying to find the sweet spot: the best rhythms of activity¬†and rest. I wear a pedometer most days in case the¬†measuring of my steps will help me find that balance. I know it’s not a precise science, but I often feel like it’s completely random and I have no wisdom at all about the abilities of my body.

Often I’m exhausted by dinner time, and if I can pull together the energy to cook dinner, then sometimes¬†I need to rest before I can¬†eat. Right now, that’s probably the hardest thing.¬†If¬†I get a second wind after eating, that is bliss – largely because it helps me interact better with my kids and supervise their music practices, homework and chores.

Then there are activities which energize me on some¬†levels, but tire me on others. It’s hard to weigh out the cost-benefit ratios sometimes, but I tend to err on the “going for it” side of things!

I went for a little hike with friends, and that nourished me deeply … but if I recall correctly, the kids had “fend for yourself dinner” that night! I’m glad they’re old enough for this, and (generally) wise enough to (mostly)¬†make nutritious choices!

Below¬†are some pictures from my¬†little morning hike. It’s amazing what there is to see and hear if we pause and open our eyes and ears. There is so much life, goodness and beauty to appreciate!

What about you? How are you doing? What are you thankful for? What are you grieving? Who encourages you? How are you doing with your various boundary lines? Do you have good, trusted friends with whom you can open your heart? With whom could you take appropriate steps to trust more deeply and grow closer? What nourishes you? How might you open your eyes and ears? Who will you bless today?

I pray a blessing on you, dear reader!

IMG_5805

Group selfie, strategically cropped for this public post! (I’m the one in the hat.)¬†

IMG_5807

Spot the owl! I love my little blue camera: it’s so easy to carry and takes great¬†pictures, but – like all of us – it has limitations!

IMG_5816

Two ducklings with their mama

IMG_5826

Wood duck reflection

IMG_5829

beaver? muskrat? otter?

IMG_5833

“Night Heron”, is what some friendly strangers called this.

IMG_5836

Night Heron

IMG_5843

Too quick for my camera, but there’s beauty in the blurriness!

IMG_5801IMG_5798

I don’t have to go hiking to see beauty: this is my neighbour’s lovely garden:

IMG_5858 IMG_5864

Quick update: tests and changes

Hi folks – it feels like a very long time since I last posted, and there is news to update you with but not much time or energy. Here is a rushed post as I’m waiting between parts of a test. Apologies: I can be wordy when I’m tired and in a hurry!

There is a new drug that will hopefully work better than the medication that I was on since last July. (I’ve now stopped taking the old one, and am coughing more and¬†feeling joint pain as a result.) I am privileged to be part of a clinical trial which is scheduled to start Monday. This week is therefore filled with various required tests to give us a baseline to compare results. I’m taking most of them in stride, but there will be another CT scan and bone scan, and I feel a slight bit of stress about them.

My last CT scan went well: I don’t remember if I gave you an update after it, but I had a lovely time with a friend whose husband had the same test scheduled directly after mine. It was such a gift to be able to spend time with her and to be so deeply encouraged by her! I am so grateful!

In case you didn’t hear the story, they had changed the protocol for people who’d had allergic reactions to the dye they inject. So I’d been told to simply¬†show up for the test and remind them I’d had a previous reaction, then they would give me something just before injecting me.¬†Once I arrived, however, they said that due to new protocol, they could not administer the test and would have to send me home. (I was supposed to have taken a bunch of meds on a whole schedule starting the day before.) To make a long story short, they had mercy on me and let me go along with the old protocol (just as I’d been mistakenly told), gave me the meds and the test went fine! I’m a bit nervous about tomorrow’s CT, but hopeful that all will be well!

This afternoon’s bone scan should be fine too. I went into the hospital early this morning to be injected with radioactive material, and I’m scheduled to go back in an hour for the test. They strap you onto a bed and a machine spins around, taking amazing pictures! The only tricky bit is that the machine gets really close to the face and it can be a bit much for someone who can be¬†claustrophobic! Last time I prayed a lot and felt very calm. I tried to keep my eyes closed and “listen” to my imaginary ipod. As long as I didn’t think too much about how close that thing was to my nose, I was fine. Every time I felt panic even hint that it was going to rise up, I prayed and felt peace. I am so thankful!

Today I’m not worried, but I am very tired! I usually do at most one thing per day and these tests make for long (for me) days. Also I’ve had to get up earlier than usual and that tends to knock me out!

So, what’s this clinical test about, you may be wondering …

One of the new drugs that has been developed for my particular kind of lung cancer is undergoing nutritional testing to see how the body absorbs it. (At least, this is how I understand things!) I am privileged to be part of this testing which will help future cancer patients get the best treatment possible. So I will be assigned to one of three groups on Friday, which will indicate what my dose is and whether I take it on an empty stomach or with a meal. (If I get to have it with a meal, they give us guidelines for what we can eat.)

I’ll have to fill in a simple daily journal (see photo), and take a bunch of tests (including spending a few days at the hospital having blood removed every hour or two), but this new drug is supposed to be really good, with fewer side effects than the previous one.IMG_5154

I was a bit worried about the days of blood tests, so I asked about the procedure. They should only have to poke me once, then leave a thing in me to which they can attach the tubes when they need more blood. Sounds easy!

Yesterday I had a bunch of blood taken and I only felt one little poke. Hardly hurt at all. This morning the technician who made me radioactive was so good that it did not hurt one bit when she poked me. Honestly, it hurt more on the way out than it did on the way in! I thanked both women for the amazing job they did. They are skilled … and kind! I am blessed to be served by such professionals!

I have been thinking a lot lately and have many stories that I could tell you, but my energy is so limited. I hope to write more frequently, and plan to once I have a little more energy.

I’m thankful for time with friends, little walks, signs of Spring, and so much beauty in this world.

Lastly, let me say that I am so grateful for the energy to truly be present with my kids, to make things and do things with / for them, and encourage them to have friends over, and teach them things, and tell them (as well as showing them) I love them. This is what really matters, and I am so thankful for all these opportunities!

Seize the day, friends, seize the day!

IMG_5117 IMG_5128 IMG_5098 IMG_4959 IMG_4985 IMG_5019 IMG_4942