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!

An Extraordinary Week

I’m resting on the couch with my feet up, reflecting with thankfulness on how good and how strange this week of testing was. I am so glad I made it through! I’m coughing a lot, and looking forward to starting new meds on Monday. (Hoping they work really well!) There are so many stories I could tell and too many thoughts to mention, but let me give you a taste …

Tuesday was blood tests and EKG. As I’m driving to the hospital, the huge dump truck beside me starts moving into my lane! I stayed calm and reacted the way they taught me to in driving school. All was well and I made it safely to the hospital, praise God.

I was rather shaken and physically shaking when I arrived at the chemotherapy unit and checked in. In the waiting room, a man verbally attacked me for no rational reason, but it hit me hard. I’m guessing he was probably feeling frightened and dealing with his own stuff in an inappropriate manner. I was feeling extra vulnerable due to the truck incident. I walked away, then burst into tears. I am thankful for the caring staff at the hospital who comforted and protected me. I made it home without any further incidents!

Wednesday was the bone scan, and my husband Jono asked people to pray that I wouldn’t cough much. I typically cough almost constantly when lying on my back, and that’s how this test is performed … but you have to stay still to get results.

I lay down on the machine and coughed almost immediately, but – and this is hard to believe – that was the only time during the course of the test that I coughed! Wow! Praise God! Thank you for asking for prayer, Jono. Thank you all who prayed.

Thursday was the CT scan – also on my back. Let me say that it went really well. No problems. No coughing. No allergic reactions. Praise God! Thank you for praying.

Now let me tell you what was challenging …

Last CT scan, a friend’s appointment was scheduled right after mine so I greatly enjoyed spending time with him and his wife. This time a different story: a prisoner in an orange jumpsuit with handcuffs and leg cuffs was scheduled right before me, so I shared the inner waiting room with this man and two security guards. I was feeling a bit scared before I got to the hospital, and my apprehension increased. Then there was an emergency situation with the person ahead of us, so we ended up waiting together for a very long time  – over an hour! I thank God for keeping me calm and helping me to see this man as a person rather than simply a prisoner. I am thankful for freedom! I am also thankful for the opportunity to be in an uncomfortable situation that was safe. I spent a fair bit of time praying while I was there! I am thankful for the friends who were praying for me.

So this has been an eventful week on several levels, with new situations and many emotions to process. I am thankful for the love of God which surrounded me, even in the presence of the yelling man and the prisoner. I am thankful for the peace of God which filled me, even in this variety of stressful situations. I am thankful for the gift of prayer and the way God’s peace pushed away anxiety and fear when I prayed. I am thankful for God’s protection in the midst of danger. I am thankful for the mercy of significant chunks of time on my back without a cough. I am thankful for the kindness of strangers, and the beauty of Spring erupting all around me. I am thankful for the love and generosity of friends and family. I thank the Lord who made me.

I thank you.

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. (Philippians 4:6.7)

P.S. –  If I could ask for one more thing … Thursday morning a woman bumped into my arm. It was a fairly hard bump from something she was carrying as she rushed past me. She apologized, and I didn’t think much of it at the time. I figured I’d have a bruise, but it seems to have triggered severe pain and muscular spasms in my rib cage. I’m tired and sore, but the week-end is coming and I want to be present with my kids. If you’re the praying type, I would appreciate your prayers for energy and healing! Thank you!

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!

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