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!

Heart cry

Our 8yo prays some amazing prayers from the heart. Occasionally they are startlingly brilliant and theologically astute. This one was so sweet I had to write it down:

“Dear God,

     Please heal Mommy of the cancer

        and take it out of her body

           and send it to outer space

              so that no one else can catch it.

       [Long pause]

       Except maybe astronauts who probably won’t catch it because they’re in a suit.

Amen”

Poison me, please!

No Charge

I’m so grateful for this new chemotherapy which has significantly reduced my cough! I typically cough much less in a day than I previously would have in an hour. I can talk all day long virtually cough-free. Praise God!

I’m thankful for medical science which has developed so many drugs for cancer (and other) patients. One of the chemo drugs I took over the winter was developed from a relative of the vinca (periwinkle) plant which grows in our garden. How cool is that! I’m not entirely sure why, but I found that deeply encouraging.

Vinca from our garden (In the Spring it sports beautiful dark purple blooms.)

Vinca from our garden (In the Spring it sports beautiful dark purple blooms.)

This new chemo that I am taking is in pill form, so I don’t have as many needles poking into me lately. The last poke I had (Monday) was for blood tests, and I hardly felt it at all. The skill of some nurses amazes me, and I always try to thank them when they do such a good job. The nurses who have taken my blood at the cancer centre are all kind and very skilled. I am so grateful!

This chemo is quite new, and targets the specific gene to work powerfully against the cancer in my body. I am so grateful for this huge difference it seems to be making in my body. On Monday I have an appointment with my oncologist after a chest x-ray. I look forward to hearing my oncologist’s opinion about the effectiveness of this treatment, and possible remedies for the side effects.

I’m also thankful that (for now, at least), I don’t have to pay for my meds. The pills cost $300. per day, which is more than I’ve ever earned! That little pink “no charge” tag is one of the happiest stickers I’ve ever seen … but I can’t help but think of the many people who don’t have this privilege, this free gift which I enjoy.

The line from “The Lord’s Prayer” resonates deeply as I pray it regularly: Thy kingdom come, thy will be done on earth as it is in heaven. God loves mercy and justice (Micah 6:8). What would our world be like if we not only talked like we valued these but also consistently acted like it? What would my life look like? Hmmmm…

 

 

Rambling Thoughts and Reflections about Camp and this Past Year

Sittin’ on the Dock of the Camp

We came back about a week ago from a time at a Christian family camp. Jono did some music there, and I felt well enough to join him a bit, playing a borrowed flute and even singing a little. I still coughed, but my cough improved enough that I could use my windpipes to make music – something I hadn’t done in many months! (So thankful for the new meds, although the side effects are a bit rough.)

I love singing, but haven’t really been able to sing since last summer. This has been so hard for me. I’ve been standing with the congregation but unable to join in the singing without erupting in fits of coughing. This past week and a half my breathing and cough have improved so much that I can quietly sing a little bit here and there with only a bit of coughing. This is such a gift, but there is still grief as I can’t really belt it out freely. I yearn to be able to fully sing again, and I hope this time will come soon.

… but back to the camp …

The people were so lovely and encouraging. I was given the opportunity to tell a bit of my story to the 400+ people there one evening, and I’m so grateful for that. It was such a privilege to be able to speak to these dear folks, and in the following days, many of them introduced themselves to me and thanked me for what I said. Many of them told me they were praying for me and following this blog, and some even honoured me by telling me part of their story. I felt very blessed and surrounded with love and support.

One of the things I said is that all of us are touched by cancer, whether directly or indirectly, and if it’s not cancer then it’s something else: we all have something. We all can relate to each other. We all can help one another carry our loads. (Galatians 6) We all have the choice to be grateful or grumpy.

Some people have said to me that I’m so brave, so strong, but the truth is that I’m not! If ever I appear that way, it is the grace of God on display. I find reading Scripture and praying regularly to be a great source of comfort and encouragement, but sometimes it’s hard to focus. I’ve printed the words of Scripture and prayers on paper which I’ve taped inside my kitchen cupboard doors to help remind and encourage me. I have the privilege of being able to ask friends to pray for me and/or with me, and to have coffee with me, or go for walks with me when I’m up for it. My community is such a gift to me, and I’ve had opportunity to grow in humility and grace as friends have served us so generously in many ways, including cleaning our toilets… significant opportunity for me to grow in humility and grace!

I have found it frustrating to not be able to do the things I normally do. I’ve often wondered how to faithfully navigate this strange season of life. Months ago I asked my amazing small group for their thoughts on how I could live faithfully, and they reminded me that this is a great opportunity to focus on deepening my relationship with God. I can’t DO all that I’d like to do, but I can still BE in relationship, and it’s relationships that really matter the most.

I am so thankful for my support people who take such good care of us. I am thankful for the friends who let me cry with them, for those who bear with me in my limitations, for those who pray faithfully for me (many of which I’ve never met), those who’ve sent encouraging notes and gifts, and the many who have helped in other ways such as cooking and cleaning, childcare, transportation, … there are so many offers of help that we’ve not yet taken up! We feel very well cared-for and we are so grateful! In these (and other) tangible ways, God shows grace and love.

A year ago, I thought I had my plan for the next year pretty much figured out. Boy was I wrong! I never could have anticipated this. The Living God is the Lord of my life, and that includes my calendar (James 4). My plans changed. Though this has been a difficult year, there is so much for which I’m extremely grateful. The brief summary would be: God, family, friends, acquaintances and strangers. The many ways I’ve been deeply blessed are way too large to count.

… but back to the camp …

We are so grateful for a fun time away as a family, for lovely people who shared themselves so generously with us, for boat rides and hours at the beach, for delicious treats, for laughter, for great speakers, for encouragement and inspiration, for opportunities to watch our children have great fun and be blessed, and for so much more.

Sibling Rivalry?! ;)

Camp Fun: Sibling Rivalry?! 😉

Wagon ride

Camp Fun: Wagon ride

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!

Chemotherapy has its privileges

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!

Holding the Christ-Light

IMG_9415 - Cropped tighter

Back in December when I was about to share our sad and surprising news with a good friend via long-distance call, I had no idea that she would also be telling me of her own family’s challenging news. While her situation is vastly different from mine, we both felt surprised and confused.

It struck me powerfully that we both struggled in our own ways to hope for ourselves, but we also both felt tremendous hope for the other in her situation.  I could clearly see good ways forward for my friend, but was needing to “piggyback” on the faith and hope of friends for me.

IMG_9415My friend sent me this little statue soon after our conversation. In the note, she included a few verses from the Bible, including this prayer that St. Paul prayed almost two thousand years ago (and many people have prayed since): May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. (Romans 15)  I wrote it on a sticky note which I stuck on the side of the fridge to remind me of her prayer for me, and to remind me to keep praying it for myself. “The God of hope”, “all joy and peace in believing”, “abounding in hope” are such beautiful and full-bodied images. I know many people have been praying for me, and I’m thankful these prayers are being answered!

When I saw the statue, I immediately thought of a line from the song (that we used to occasionally sing in church) below: I will hold the Christ-light for you… and I realized with deep gratitude that is precisely what a number of my friends were doing for me, with their prayers, words and actions.

The Servant Song  by Richard Gillard

1.  Brother, sister, let me serve you; let me be as Christ to you

Pray that I might have the grace to let you be my servant too.

2.  We are pilgrims on a journey, we’re together on the road

We are here to help each other walk the mile and bear the load.

3.  I will hold the Christ-light for you, in the night-time of your fear.

I will hold my hand out to you, speak the peace you long to hear.

4.  I will weep when you are weeping; when you laugh, I’ll laugh with you.

I will share your joy and sorrow, till we’ve seen this journey through.

5. When we sing to God in heaven, we will find such harmony;

Born of all we’ve known together of Christ’s love and agony.

6.  Repeat v. 1, singing ‘Sister, brother…’

Copyright 1977 Scripture in Song.  Used by permission.

There are times when we need people to lend a hand to help us carry our load. Then there are times when we need people to simply carry it for us. That’s how I felt early on with my diagnosis. I needed people to hope for me and to help me to hope, because my hope was flickering dimly at that time.  I needed people to pray for me, because praying was very hard at that time. My prayers were often brief heart-felt cries, pleas, groans, wordless yearnings, tears.  I took comfort in the (sometimes brutally) honest prayers recorded in the Bible (e.g. Jeremiah, the Psalms). Knowing that friends were praying: not just for me, but actually on my behalf, made such a difference.

Here are a few lines from a Bruce Cockburn song that also speaks to the support of friends. How important it is to have friends who lovingly speak truth to us: who help us remember what is real and cling to what is true …

I’ve been scraping little shavings off my ration of light
And I’ve formed it into a ball, and each time I pack a bit more onto it
I make a bowl of my hands and I scoop it from its secret cache
Under a loose board in the floor
And I blow across it and I send it to you
Against those moments when
The darkness blows under your door

Isn’t that what friends are for?

– from Breakfast in New Orleans, Dinner in Timbuktu (1999)

A number of friends have helped bolster my hope in various ways. For this I am so grateful. My desire is that I will travel this journey through the valley not just with gratitude, but also with hopeful realism. Hope is a significant ingredient I’ve been reflecting on quite a bit lately, and may ramble about more later!