Chemotherapy

No news isn’t always good news

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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

Ottawa Clinical Trials Team (2017?)

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

That was quick!

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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!

(Summer picture to remind those of us in cold places that warmer days will come! #hope)

Thankful for Little Things

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Two little updates today, for which I’m giving thanks!

First, my feet have been mostly numb since my IV chemo back in 2013-14, but recently I’ve started occasionally having more feelings in my toes! The other day I could feel sensations between my toes and sometimes I feel under my toes. Yesterday I could feel the coolness of the floor on my baby toes. This might not seem like much, but I’m very grateful. It helps me to balance better, and may help to prevent injury. Plus, I don’t really like feeling like I simply have big blobs at the end of my legs. It’s nice to feel more like I have feet again. Woo hoo!

Second, my CT Scan pre-medication protocol is on holiday this week! To make a long story short, I just learned that I have permission to NOT take prednisone in preparation for my CT Scan tomorrow. This is a little bit risky, since I may be allergic to the contrast dye they give me during my scans. But it looks more likely that I’m not allergic and if that is the case then it would be so good to not have to take huge doses of strong medications unnecessarily. I hate being a whiner, but it is exhausting, and I’m thrilled that I don’t have to go through the whole process of setting my alarm twice tonight to take the meds. Having said that, allergic reactions to this contrast dye can be serious and I’m feeling a bit nervous about that possibility. So, if you’re a praying person, please pray! The allergist and radiologist and I all think it’s worth the very small risk. So I hope it’s a wise choice and that everything will go well tomorrow! If so, I may not have to take prednisone before CT Scans again!

In other news, I may be speaking and/or singing at a couple of fundraising and awareness-raising events about Lung Cancer in November. As always, I’m trying to figure out how much energy I have and where is best to invest it. But November is Lung Cancer Awareness month, so this is definitely worth considering. I’ll let you know more later!

Hope you are all well, and giving thanks for good gifts both big and small!

 

A few steps forward, a few steps backward …

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HibiscusIn spite of the good work of my physiotherapist and all the stretches and exercises I’ve been doing, my shoulder is only a bit better. My physio said it would likely take six weeks, and I’m trying to be patient and disciplined!

I’m feeling more energetic at times, and at other times completely exhausted. I can’t find any patterns (apart from the fact I tend to feel more fatigue in the afternoons & evenings), so making plans is challenging and sometimes discouraging. On the upside, my 8yo and I enjoyed a long stroll together yesterday evening, and I felt up for another walk this morning. This is encouraging!

duck watchingIMG_0272signs of fall

I’ve now got this itchy rash on my arms & legs – mostly where my skin was tanned in the summer. My oncologist doesn’t know what causes it: possibly a combination of the meds and something else. A friend suggested putting aloe vera on it to help soothe the itchiness, so I tried it and it seems to make a big difference for a few hours. That made falling asleep last night easier than it’s been in a while!

Having a sore shoulder and being itchy isn’t so bad compared with not being able to breathe well. I’m trying to keep things in perspective. 🙂

Here’s an encouraging note:pollinators at work

Every three weeks I have two days with clinical trial appointments. Blood is drawn from my arm each of those days. Left arm on Mondays, right arm on Tuesdays. The Monday blood is sent to a local lab to make sure I’m healthy enough to continue treatment. The Tuesday blood marks the beginning of the next cycle of treatment, and is sent farther away to a lab for the clinical trial data.

Last month I started thinking about the process, and wondering why I had to have blood removed two days in a row. Couldn’t the procedure be changed so that I only had to be poked once every three weeks? (I also get poked whenever I have a CT scan, but that seems unavoidable.) As I thought it through, I couldn’t see any reason that would require blood being removed two different days, except that’s the way the trial was set up. I was open to the likelihood that I was missing something, since I have no background in medicine or pharmacology.

So, at my appointment last month, I raised the question with my oncologist and clinical trial administrator. They could understand my desire to avoid being unnecessarily poked with a needle, and promised to look into it.

When I received word of my appointments booked for this week, something was different! I went in to the clinical trial unit at the hospital, and they poked me once and filled up all the vials that were needed: two for the local lab and a bunch more to be sent away for the clinical trial lab. Only one poke this week! Yay! Then I went to see my oncologist, and he told me that several hours of discussion went into this decision. I’m so thankful! … and I hope that many future clinical trial patients will benefit from my raising the issue and the people in authority investing those hours.

Sometimes we feel powerless. From what I’ve observed, cancer patients tend to feel this quite a lot. Going though tests and treatments is really hard, and even before the diagnosis much of our power is stripped from us. It’s scary and stressful and painful and unpleasant.

I’m glad I was able to think about the blood work process, and felt empowered to ask the question. I’m thankful for those who were open to considering the possibility and willing to invest hours in wrestling with this question. I’m also grateful for the generous folks in the clinical trial section who now graciously welcome me there two days in a row instead of one. (I still have to have the other tests on the second day.) I know that makes extra work for them. Everyone is so busy. There are too many cancer patients.

Earlier this week I was thinking it would be nice to bake some muffins for our family, but I was too tired. Then a friend arrived at our door with homemade muffins she had baked for us! The next day another friend came with some more! Now we have two types of delicious muffins. We are so abundantly blessed!

Last week an envelope containing two gift cards for the grocery store arrived in our mailbox! Thank you, anonymous friend!

So that’s some of my news! … and I will also add that on my walk today I ran into three people who hadn’t seen me in a while (I haven’t been out and about much in the past two years), and they all commented on how good I’m looking. At least one didn’t recognize me at first. They all love my long curly dark hair, and one even said I look twenty years younger!

I’m thankful for these things and for so much more!

neighbourhood garden Fall flowers beauty

Clinical Trial Update

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On Friday May 8th, I learned that I get to eat breakfast for the foreseeable future! I’m part of a clinical trial which is examining the effects of food on absorption of a new drug which is under examination here, and not yet available by prescription.

Afternoon testing supplies

Some of the testing supplies

I started Monday the 11th, with a long (8:00am to 5:00pm) day at the hospital. Some excellent nurses poked a needle into me which remained there for the course of the day so that at regularly scheduled intervals throughout the day they could collect blood samples to analyse how this new drug was doing in my bloodstream.  Several times they also attached about ten electrodes to my skin to record how my heart was doing. There were a few other tests which also occurred in a blur of a busy day. These were all a routine part of the clinical trial.

One poke lasts the whole day!

One poke lasts the whole day!

Electrodes for the ECG

Electrode for the ECG

Vomit bucket unused!

Vomit bucket unused! 🙂

I didn’t feel like a guinea pig, though. I felt very well cared for by skilled (and happy) professionals who made a long and tiring day as enjoyable as it could possibly be. Well, they didn’t give me chocolate, but one nurse who was going on break near the end of the day even went so far as to ask if she could bring me something.

Over the day I learned a bit about them and their families and observed some of what their job was like. It’s a small unit with a lot going on. Patient care comes first, and they always seem willing to answer questions or stop and talk. At times during the day they were very busy: one patient forgot to come in for her morning appointment and had to be squeezed into the crowded afternoon schedule. Another patient had to be whisked away for some additional tests, with many repeated explanations given to the patient as well as three accompanying family members. Blood samples were spun out in the centrifuge, chairs and beds were rearranged in intricate patterns, and scheduling at times seemed like an advanced logic puzzle.

Monday morning this tray was filled with empty tubes. Late in the afternoon, only one set of blood tests left!

Monday morning this tray was filled with empty tubes. Late in the afternoon, the timer counts down to the last set of blood tests for the day!

My morning was basically non-stop tests, with little downtime in between. Two nurses were needed at times because some tests had to be performed simultaneously. The afternoon was a bit quieter, with time for short walks around the hospital between tests. I enjoyed visits with my husband and another friend, and did a little reading.

I went back for a shorter visit with fewer tests the next day, and again this week. I will be spending time (mostly short visits) with these nurses weekly over the coming months. I could think of worse things!

So far, this drug seems to be working! I am still coughing, but much less often – and it doesn’t feel like I may explode whenever I cough. I’m tired, but less so than I was in recent weeks. I’m sometimes short of breath, but no more than before and perhaps even less. I am thankful!

I’m also thankful that the side effects seem better than with the previous drug. It’s hard to say at this point, but I understand that usually side effects decrease after the first week or two and this is what I’m hoping for! So far, there has been a fair bit of nausea but no vomiting. My tummy is upset a lot of the time, but this may fade. No visual disturbances, so I may try driving at night again at some point.

So far, so good!

Last time I asked for prayer for my side which was extremely sore. I rejoice to report that the pain is completely gone and has been for some time. Very thankful!

We continue to be grateful beyond words for the countless ways so many people show us love and kindness. The other night as we sat down to a meal which an amazing woman from church had prepared and delivered to us, my 8yo daughter leaned onto my arm, looked up at me and said with the most beautifully expressive voice, “We are so blessed!”

Yes, we are!

We are so grateful for the thoughtful generosity of so many!

We are so grateful for the thoughtful generosity of so many!

Gerberas are the happiest flowers!

Gerberas are the happiest flowers!

Spring is bursting out in our garden!

Spring is bursting out in our garden!

Our garden changes too quickly in Spring!

Our garden changes too quickly in Spring!

Another glimpse of Spring in our garden!

Another glimpse of Spring in our garden!

Check out the texture on this tulip in a public garden!

Check out the texture on this tulip in a public garden!

Wood duck

Wood duck: the other day we noticed a new neighbour!

IMG_5511

Group hug! Goodbye to good friends!

Group hug! Goodbye to good friends who came for a visit!

Update from the middle of the night

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From my last post:  “… But I want that chemo to kill more of the cancer … and I need to get in to see my oncologist before they will schedule me for more. I was feeling a bit frustrated that the long week-end delayed my regularly scheduled Tuesday chemo date, and now I’m chomping at the bit to get back on track! (… and desperately trying to not succumb to the control-freak part of my nature!)”   Note: I was initially expecting to start my fourth cycle of chemo on February 18th, but I’m still waiting.

Here’s a question I’m pondering in the middle of the night here: Does lying awake in bed developing strategic plans for advocating for myself to get a chemo appointment *necessarily* define me as a control-freak?

I left multiple messages with the phone systems in both my oncologist’s office and chemotherapy booking on Monday, then again on Tuesday, and I’m feeling frustrated that no one has returned any of my calls.  Not even a “Sorry you got the wrong number,” reply or, “We’re really busy but we’re working on it because we know this is important to you,” or, “We’ve got your messages, and if you’d please stop calling we’d have time to actually book you an appointment!”  Nothing. So when I woke up with my mind racing, I eventually decided to come downstairs in the middle of the night and leave more messages. Sometimes action helps. If I don’t hear back by 9:30 am, I plan to go in person to the chemo scheduling office and see if I can talk to an actual person. If that doesn’t work, we plan to contact some of the people we know who can help us navigate the system.

Sometimes action helps, but my mind is still racing. Those of you who think I’m so full of faith, remember this moment! There’s a great verse in Philippians (4:6,7) which is much easier to memorize than to consistently live: Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. I was praying on Monday and I felt peace. I was praying on Tuesday and I felt peace. Here and now, in the middle of the night, my mind is racing and although I’m trying to pray, I’m not really feeling the peace!

Time for a new strategic planning session! Warm milk. A couple of Psalms. Asking God to help schedule the chemo (again), find things to be thankful for as I ask. I go to the cupboard for a mug, and the one right in front is a gift from a former student leader who was visiting town this summer. It reads, “Faith is not knowing what the future holds but knowing who holds the future”. (Insert thankful smilie emoticon here!)  I’m now sipping from it – good plan! Now I’ve read Psalm 34 (one of my many favourites)  I will bless the LORD at all times; his praise shall continually be in my mouth.  … I sought the LORD, and he answered me, and delivered me from all my fears.  … good Psalm, good plan. As I read it, I could feel my fear and stress starting to melt and my world getting a bit bigger. There may possibly be more in the universe than my next chemo. I’m sorry for my narrow-minded control-freaking focus on that one thing. I thank God for many of the kindnesses of family, friends, acquaintances and strangers, and I thank Him for many of his good gifts to us. This is helping. This is helping me to remember what is true and real. “…though we stumble, we shall not fall headlong, for the LORD holds us by the hand.” (Psalm 37:24) I thank God that I had peace and trust earlier that He was is ultimately in charge of my chemo schedule and would will take care of me. I go back and edit that last sentence, thanking God again! I edit again to, “… and you are taking care of me.”  Psalm 38:9 & 22 read, “O Lord, all my longing is known to you; my sighing is not hidden from you.  Make haste to help me, O Lord, my salvation.”  Psalm 40:17 says, “As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God.”  I keep reading, and so many verses jump off the pages at me. I should not be surprised that this happens: it has happened so many times before. I am thankful. Not fully filled with peace, but I think I’ll keep reading and praying and sipping … my “cup” doesn’t feel like it’s overflowing yet, but the peace is growing, my mind is slowing down, and I think it’s nearly time to brush my teeth and head back to bed …

… and if I don’t hear back by 9:30 9:00 am, I plan to go in person to the chemotherapy booking office at the hospital and try to talk with an actual person!

Beautiful delivery Tues. afternoon!

Chemotherapy has its privileges

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Chemotherapy has its privileges: you get to carry a special IMG_9471card. Not a gold card, but a red and white “fever card” which reminds the patient to “seek immediate medical attention at the nearest hospital” if one’s temperature is at or above 38 degrees C (100.4 F). “This may be a cancer EMERGENCY”, it declares in bold letters.

We get regular reminders that we are to check our temperature daily, and I usually do it in the evening. Friday morning, though, I awoke feeling quite wretched, reached for the thermometer and discovered my temperature was 38.1 … wishing it was 37.9 didn’t change the reading!

So I went downstairs to tell Jono (my husband), who reminded me that the car was at the garage for repairs. By the time I’d jumped in the shower, dressed and grabbed my bag (which was already packed since I was scheduled to spend the afternoon having chemo), a lovely neighbour was arriving to drive me to the hospital. (Jono picked up the car and met me there later.)

I didn’t have to wait long before they brought me into my own special isolation room, with a warning sign posted on the door. I didn’t even know they had these private rooms in emerg – kind of like being in a hotel with my own attached powder room! Few people were allowed to enter, and they had to be dressed up with special masks etc. to protect me from further infection.

“Febrile Neutropenia” they call it. I think it means that the chemo significantly affects one’s ability to fight any infection. At certain times of my chemo cycles I have virtually no white blood cells (nor red ones nor platelets for that matter). The timing of this fever couldn’t really have been better for me – praise God – because my blood test numbers were good and I was due to have chemo that day.

They ran a bunch of tests: more chest x-rays, urine tests, blood tests (three pokes and two new bruises), etc. but couldn’t find any particular infection. I slept most of the day while they loaded me up with fluids and two different IV antibiotics. They considered admitting me, but I was so thankful they let me go home around dinner time, with a prescription for yet another antibiotic … covering all the bases!

I napped on the couch all evening, then a quick dinner and straight off to bed where I slept really well. Amazingly well, in fact! I slept EIGHT HOURS STRAIGHT, which I hadn’t done for six months! Normally I awake about every two to three hours – generally because I’m uncomfortable. Since August, I can only lie on my right side or else I cough. I could not believe that I woke up at 9:00 am with the glorious sun shining so high in the sky!!

Saturday I felt so much better. Sunday better still. This morning it occurs to me that the fact that no one has pumped my body full of toxic chemotherapy chemicals since February 4th probably has something to do with me feeling stronger and more energetic.

… But I want that chemo to kill more of the cancer … and I need to get in to see my oncologist before they will schedule me for more. I was feeling a bit frustrated that the long week-end delayed my regularly scheduled Tuesday chemo date, and now I’m chomping at the bit to get back on track! (… and desperately trying to not succumb to the control-freak part of my nature!)

I’m also very aware that so many of you are praying powerfully for me and I can’t tell you how much that means to our family. I feel your prayers and the presence of God powerfully, and I know that your prayers are making a huge difference. Thank you!

I’ve been reading the gospel of Matthew lately, and healing was such a big part of Jesus’ ministry. Chapter 8 tells how he healed a leper, which was the big “incurable” disease of the day. The leper knelt before Jesus saying, “Lord, if you choose, you can make me clean.” Jesus stretched out his hand and touched him (a cultural / religious / medical no-no of the time), saying, “I do choose. Be made clean!” Immediately his leprosy was cleansed. Then Jesus heals a Roman Centurion’s servant, commending the Roman for his faith (we are all welcomed – praise God!). Then he heals many at Peter’s house, including Peter’s mother-in-law. Chapter 9 describes Jesus healing a paralyzed man when he saw the faith of his friends, then a woman who had been suffering from bleeding for 12 years, a little 12 year old girl who had died, two blind men, a mute demoniac, and the list goes on…

What I find so exciting is that Jesus goes to all the cities and villages. He teaches, he proclaims the good news of the kingdom, he cures every disease and every sickness, he has compassion on the crowds because they were like sheep without a shepherd … and he says to his disciples,

The harvest is plentiful, but the labourers are few; therefore ask the Lord of the harvest to send out labourers into his harvest.

Jesus then summons his twelve disciples, gives them authority, and he sends them out to do the same things he has been doing … good news!

You, through your prayers, are written into this story, sent by Jesus to do his good work of love and compassion. Thank you for being labourers in his harvest, and for the difference it is making for us.

Please do keep praying – not only for me, but also for my family. Being a caregiver / supporter / loved one is hard work! My husband is tired; my kids can be scared / grumpy / angry / etc. We all welcome your prayers.

We also greatly appreciate all the warm thoughts, cards, help and gifts we are receiving. It is so encouraging knowing that so many people are standing with us and supporting us in so many ways, and believe me: this all makes a HUGE difference to us. We can not tell you how much it means to us. THANK YOU!