A few steps forward, a few steps backward …

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

From Hill to Hill

When friends near and far are asking how I’m doing and why I haven’t updated the blog, I know it’s time! 🙂 The short summary is: I’m quite well, praise God! Life has been full in many good ways the past couple of months, and computer challenges made it difficult to update the blog. We are so thankful for the generous friend who gave us a new  computer which I have sufficiently figured out and am thrilled to be able to use! (Apparently you can teach an “old dog” new tricks! haha!)

Time and time again I am blown away by the generosity of people! There are so many stories I could tell from the past couple of months, and I hope to at some point. Let me simply say we feel very blessed on many fronts!

The numbers are good!

The numbers are good!

Here’s the health summary:

The clinical trial drug seems to be working very well! I have better days and worse days, but overall I feel better than I have in many months. The side effects are mostly manageable and overall seem to continue to decrease. I am always looking for the patterns, wondering if I change my eating habits will the GI effects diminish, for example, … but so far there is no discernible consistency. One day I’ll be mostly fine, and the next I’ll be napping all afternoon / evening. Fatigue hits hard and startles me, like running into a wall. But I’m learning to adjust my expectations and try to do things when I can.

One day in the summer I wanted to walk through a long and hilly, sandy path to the lake. I’d heard the waves were gorgeous and I really wanted to see them and play in them. My 8yo was with me and I said, How about we try walking to the top of the next hill and see what we can see. I really didn’t think I could make it all the way there, but wanted to try a little. Each time we got to the top of a hill I asked her if we could try for the next one. We kept reaching for these little goals then re-evaluating, and amazingly we made it all the way through from hill to hill to the lake. The colours were beautiful, and the scenery spectacular! I wished I could have brought my camera! We played in the waves which were huge for a lake and reminiscent of the ocean. My daughter was thrilled that I could play and climb with her! I didn’t stay long, but thoroughly enjoyed the opportunity, then turned around and headed back. I felt exhilarated and exhausted, but mostly spent the walk back praising God and thanking Him for giving me the strength and courage to make the trek, and for the joy of the whole experience.

This past week was tiring, with all the usual routine tests and appointments that happen every 3 weeks, plus the CT scan which I have every 6 weeks. I have to take meds before the CT scan to help prevent allergic reactions, and that means setting my alarm to take them once or twice during the night. I am grateful for the meds and the care, and the good people with whom I interact, but having things on three days in a row and missing out on sleep takes so much more energy than one might expect. I was very tired going into this week, but yesterday was feeling amazingly well. Sometimes these gifts of energy and ability come as beautiful surprises!

There have been so many beautiful gifts and surprises this summer, and I would love to tell you about them all … but today I have groceries to buy! The summary is that we’ve had many joyous visits with friends, the kids all seem to be settling into their new school rhythms well so far, and we are feeling very loved and blessed. I hope to fill you in on more details in the coming weeks.

Thank you for your love, prayers and support. We cannot find words to tell you how grateful we are!

Beautiful blooms!

Beautiful blooms!

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Setting up for the usual tests

Setting up for the usual tests

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Clinical Trial Update

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!

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Group hug! Goodbye to good friends!

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

Freedom!

I feel so much better! The side effects of this chemo continue to be difficult, but I’m alive and I can breathe pretty well. There are times when I even forget about the cancer … something I previously hadn’t been able to do since every breath was a reminder.

I used to cough constantly – especially if I was talking. I couldn’t sing, shout, or even talk much since my voice wasn’t working. Walking – even part of a short block – at a brisk pace not only gave me shortness of breath, but started off coughing that wouldn’t stop for up to half an hour. Some evenings I wondered if I could make it up the stairs to my bedroom.

Right now I feel so free! I typically go the whole day without coughing. I can sing a little bit, and shout to my kids if I need to. I still suffer from shortness of breath, but not nearly like it was before: there’s a spring in my step!

free!

Yesterday I took our kids and some of their friends to the park. I cycled there, and together we formed quite the procession on bikes, scooters, a skateboard and roller blades! The kids had a blast at the park and I thoroughly enjoyed watching them and taking photo’s.

Even my chest x-ray last month showed improvement, and chest x-rays don’t show small changes! I am so very thankful for this new chemo and for the greatly improved health I’m enjoying!trying new things!

I have another chest x-ray and an appointment with my oncologist next week, and I am hoping we’ll be able to slightly reduce the meds I’m on and thus hopefully reduce the side effects.

I am so grateful for this freedom and energy, and I want to make the most of it!

I hope that you know deep freedom, and are living life to the full!

PS: Guess who we keep finding at the park … a gift that brings us joy!

Guess who we found at the park! IMG_1882 IMG_1886 IMG_1901

Postponed Pleasure

In the midst of our cold, long winter, we received a happy email from a dear friend. He and his family had been praying and felt God was telling them to use some cash they’d set aside to give us the gift of a Caribbean holiday at an all-inclusive with them. We felt overwhelmed with gratitude for this great offer, and really hoped we’d be able to go.

My oncologist said to wait until after the chemo was done and I’d had a bit of a chance to recover. There were delays to the chemo and uncertainty about how many rounds I’d go. Our generous friends were fine with the plans being delayed and the last-minute uncertainty. We waited…

Finally the decision was made regarding the end of chemo and the doctor gave us a date for booking the trip. Our friends were looking at the Dominican Republic, but my oncologist wasn’t keen since the medical care there is not as good as elsewhere. He would have preferred that we went somewhere safer.

Because it was so last-minute, there weren’t loads of options, and as we prayed about it we were ok with the risks of going to the DR. Our friend booked a great place with a water park nearby and a kids club – looked fantastic! We had our tickets and were ready to leave Easter Saturday.

Good Friday I awoke with a fever. If you read my previous post about chemo and fevers, you know that this meant an immediate trip to Emergency because chemo patients have compromised immune systems, so a fever can mean a life-threatening situation. A good friend drove me there and stayed with me throughout the day, while doctors and nurses came and went. She even read aloud to me, until my snoring drowned out her words! 🙂

Tests revealed I had pneumonia and ruled out any possibility of travel the next day. Cancer in my left lung, pneumonia in my right: no wonder I felt tired and my breathing was laboured! The doctor wanted me to stay in hospital overnight, but I insisted on going home. I really wanted the rest of my family to go on holiday the next day, and I didn’t want to miss out on time with them before they left.

Naturally I was disappointed to not be able to fly out with them, but all along I’d had the attitude that being offered the trip was a very real part of the gift, and I received that with joy and gratitude. I was hoping that I might be able to travel a few days later, but had no idea if I could get a flight, or how much it might cost, or if I’d be well enough …

Jono & the kids left, and I was so happy for them. I was also very happy to go back to bed! Friends brought food and checked in on me several times a day. I was in good hands, and grateful for the opportunity to be at home and sleep. People were praying, and every few hours I noticed that I felt considerably better than I had earlier. On Easter Sunday I wasn’t well enough to go to church in the morning, nor even across the street to the neighbours’ for brunch (they generously sent food over for me to enjoy at home!), but by dinner time I was up for dinner at other neighbours’, and stayed much longer than I’d planned since I continued to feel better throughout the evening. (Can any of you imagine me perking up during dinner conversation?)

On Easter Monday I felt well enough that I called the travel agent to inquire about flights. I learned that flying out on Tues. was quite pricey, but Wed. wasn’t so bad. I booked a flight for Wed. with hope and excitement, glad for an extra day of recovery. Other friends even gave us cash which covered the flight and a few other costs. We felt so blessed.

Snow still covered part of our backyard the day I left for the airport. The view of the DR from the plane was amazing: too bad I didn’t have a camera with me! (But I’m glad for the great photo’s Jono & the kids took before I arrived!)

I was so grateful to be able to go on this holiday – even if only for part of the week. It was relaxing to not have to think about cooking or homework or music practice. I enjoyed watching the kids play and reading and hanging out with everyone. Many smiles and much laughter! By the end of my time there, I was playing with the kids in the pool and feeling pretty well!

What a good gift from God and from our friends … and may I add that we are very thankful for the timing of my fever: had it occurred even the next day, while I was in the DR, that would have been at the very least a lot more complicated. Pneumonia can be so serious, and I am thankful for the good medical care I received here, including effective antibiotics.

I am also so grateful for the good gifts of friends who prayed and contributed together to care for me here and give us this great, relaxing trip. I can’t tell you how much that meant to us. What a beautiful grace-filled oasis in the midst of a long and difficult winter!

Watching peacocks and peahens

Great View from the shade!