The Bell of Hope

Clang!  Clang!  Clang!

I never anticipated that the clang of a cow bell would ever sound so victorious!  Yesterday marked the end of round one of my treatments and, in keeping with the fine tradition of the Cross Cancer Institute, I happily rang the “Hope Bell” to mark the joyous occasion.  What a nice gift to share it with our “Breakfast Club” buddies who we have met in Unit One of the Cross over the last weeks.  We also had a very pleasant surprise last Friday when we found out that round one of chemo was also ending yesterday.  This was exciting to hear as the chemo drugs were beginning to wreak a bit more havoc on my system. With this being said, my side effects during radiation and the chemo were still relatively minor compared to so many others and we are so thankful for this answer to our prayers!

It was encouraging to hear from so many of you yesterday who reported hearing the bell all around Edmonton and from as far away as Vancouver. Thanks to everyone who paused for a minute to offer a prayer of thanksgiving. Thanks also to so many of you who prayed for a peaceful sleep on Sunday night, prior to the meetings and final treatment - our prayers were answered!

The day was very busy as we had to meet with a number of members of the treatment team.  First we met with Wanda, our clinical study nurse, for my exit interview, which includes quality of life questions and mental acuity tests, referenced back to my entry baseline. I passed!

Following that we met with Dr. Amanie, my radiation doctor, who indicated that things went very well with the radiation. We also had the opportunity to pepper him with questions about long-term side effects and recovery from the radiation. I discovered that I may have a built-in excuse about my short-term memory challenges from anywhere between 2 to 6 months - not sure who was more discouraged, Loretta or me!

We then snuck in my final blood test before heading off to the last radiation session!  The day was capped off by us delivering some Long-Term Disability paperwork to my doctors.  All within 90 minutes!  Kudos to the fine folks who work at the Cross - what a gift to have such caring experts so close to home and to have this whole process free of charge.

It was a blessing to not go to the Cross today and have what may be a “normal” weekly rhythm, whatever that is!  My new “normal” will now focus on rebuilding the body, soul, and  mind over the next month in preparation for round two of chemo which will start in early March.

Loretta’s new normal will now focus on spending more time at the office during tax season so she feels like she is on top of things and then come home to finely crafted dinners (apparently she feels that the culinary part of my brain has been positively affected!).

We also pray that a sense of everyday living returns for our kids, who have in many ways put their lives on hold for the past weeks.  They have made the past ten weeks tolerable, and in many ways, quite beautiful.  What a great gift to know that you are so deeply loved by so many!  Now that’s a bouquet of flowers.  Take a minute now to identify some people in your life who you deeply love that need to hear that from you today - and tell them!

Loretta and I have struggled with jealousy as so many other lives just seem to have gone on, back to normal!  I took the truck out for a quick spin today (just out of the garage, to park at the front) - what a fine feeling to do something as simple as that!  We hope soon to take off some of the immune system restrictions for public places so we aren’t as housebound - what a delight it will be to again go out for dinner!  What a masterpiece the brain is, yet I had never thought anything about all the incredible things it does.

As I reflect on this “normal” I realize how so much of my life has not focused on gratitude but on greed.  I just read this section from Space for God by Don Postema this morning (p. 53):

“Not much in our society stimulates us to such appreciation. … If we listen to all these voices, we won’t feel much gratitude. ... Greed grabs.  Gratitude receives. That’s why, in our society, gratitude seems like a radical reaction to life. Gratitude takes nothing for granted.”

Postema then challenges us, using John Calvin’s words, to be daily “overwhelmed with such great and copious effusions of God’s beneficence...and surrounded, whithersoever you turn your eyes, by such numerous and amazing miracles of God’s hand, that [you] never lack matter for praise and thanksgiving.”  In 21st century terms - “Live with an attitude of gratitude.” Postema suggests that if we live this way we will “awaken to the fact that your life is a gift.”

I am, I hope, learning this lesson.  It is very hard...

So what’s next for the blog?  Our next post will list all the treatment stuff that we have tried along with the conventional cancer treatments with the hope and prayer that others who walk this journey will benefit from our research. I will also attempt to provide a brief weekly update.

In the interim, we invite you join us in “stormin’ the gates of heaven”.  

- Doug

Weekly Update from Doug

Words of “wisdom” from the Nooter: “3/4 of the way there – time to pre-order a burger and beer for the 19^th hole.  All the best for the home stretch!”  Ed Noot, longtime friend and golf fanatic!  See the blog post from December 10, 2016, for more background on the Nooter.

As of today we are officially 75% of the way through the radiation treatments, with just five sessions left.  We are also 50% through this chemotherapy session.  I am very thankful that the side effects have been very manageable, with some nausea and fatigue in the last week.  We did have a bit of a setback this week as I developed some facial soft tissue edema, which led to an extra doctor visit, but it seems to be under control now.  I went from Lizard Man to Dinosaur Man for a few days.  

My forehead is also becoming quite red from the radiation so I have a rather bizarre looking tan!  When I complained that it was itchy, Tara reminded me to be thankful that it wasn’t my prostate! 

My short term memory is also taking a hit.  I am now being reminded, lovingly of course, by Loretta and the kids - “Text me when you turn the stove off after making breakfast” or “Did you take your pills?” (about 50/day).  I also need a daily list to keep on task.  I was invited by a number of seniors, “Welcome to the club!".  What’s next … Depends?

In fact, this whole treatment process is quite humbling. I am suddenly reliant on others for so many things.  I now hop into the passenger seat rather than the driver’s seat, need to ask others for help with basic home related tasks, and have a scheduled nap time! 

I had my weekly check in with the Clinical Study Nurse and was pleased to hear that all of my important blood counts are still quite strong!  I am so thankful that I was granted admission into the 4-week program rather than the typical 6-week program – 75% completed sounds so much better than 50% completed!  I'm not sure my forehead could handle three more weeks of radiation either!

The Cross has a neat tradition of ringing the "Hope Bell" after one's last treatment. For me, this will be Monday at about 10:30 MDT.  If you are free at that time, listen carefully for three bell rings and ask that God continue to work in my body to bring healing, both during the ongoing treatment and well into the future! 

Monday will also be the final consult with my chief radiologist, who will provide an update on the treatment to date.  I am anticipating that it will be a bit of a challenge to rest peacefully on the weekend and sleep well on Sunday. Please pray for this as well.

Our entire family would like to express our deep thanks for your ongoing and faithful support and prayers.  This support is expressed in so many fantastic ways: the neighbour who often texts on Monday asking which day she may bring supper over; my Mom who provides a wonderful Ribfest every Thursday night (as restaurants are deemed to be too dangerous for my immune system at this point); the folks who fire off weekly texts asking how things are going; and on and on!  We thank God every evening for how you have blessed us and cared for us!  We experience God through you in so many ways!  Storm the gates!!

- Doug

P.S. We have updated the blog to allow you to subscribe to the blog so that you'll receive an email when we add a new post.  You can find the "Follow by Email" option on the right-hand side of the blog when you're viewing either the blog on a desktop or the web version on your phone.

Flowers and more flowers: An update from Doug

In the spirit of thankfulness that Erin so beautifully described in her last post, I thought it wise to provide an update about last week’s treatments.

This past Friday saw us almost half way through radiation, as nine of 20 sessions have been completed.  We are so thankful that our prayers were answered when I was “randomly chosen” for the four week (five days a week) clinical study instead of the typical six week treatment plan.  A daily “chemo-cocktail” is also part of the treatment routine and I need to take it for the full six weeks (seven days a week).  

The typical treatment day has a very specific (annoying) routine that requires me to fast for two hours prior to taking the chemo-cocktail and to take the chemo-cocktail one hour prior to the radiation. There is also compelling research which indicates that fasting increases the effectiveness of the chemo and radiation. As such, the typical day will often see me fasting for up to 18 hours between supper and breakfast.  This may sound challenging but it quickly becomes quite routine!  The bigger challenge is getting my daily food requirements in that short six or seven hour window when I am not fasting. 

We are very thankful that, so far, our prayers are being answered and the side-effects from the treatment plan have been relatively minor. I have some nausea, but my appetite is still quite healthy.  I have also had a slight increase in headaches, though this is to be expected based on what is happening to my brain!  The pain is still being managed by Tylenol. Most days can be enjoyed with family visits and daily tasks, with few side-effects.  Blessings abound!

We also feel very blessed by our proximity to the Cross, especially with the nasty winter that has engulfed Edmonton for the past few months.  On bad days, our round trip to the Cross and home takes about 60 minutes, while fellow patients who we have come to know have daily trips of up to four hours!  What a blessing, especially as my primary driver, Loretta, is still running an accounting business during tax season.   

As another flower, we are grateful that, for our final two weeks, our radiation sessions will start at ten o’clock in the morning. It is nice to get into a routine as far as medication and meals.  This also allows Loretta to have a “normal-ish” morning and deliver me home by eleven o’clock in the morning before heading off to work.  Another blessing!

God also continues to provide “mini-miracles” which are a delightful surprise.  After a terrible night of little or no sleep on Thursday night, I woke up the next morning like all things were normal – no stomach ache, no headache and no radiation session to run off to!  Loretta and I enjoyed a quiet hour or two, reading through the paper and playing some games on the iPad.  

Finally, your regular notes and texts of encouragement continue to be such a blessing.  Please continue to pray that I experience minimal side-effects as I complete this first stage of treatment and for the miracle of the beast to be slain! 

             - Doug

Eucharisteo

Have you ever picked up a new book and flipped straight to the last page? I think that most individuals have an intense desire to know everything. We don't want to wait the 300 pages it takes to get to the conclusion that the author planned. Instead, we just want all the answers, and we want them now! The problem with reading the last page first is that you've just ruined the whole story for yourself. There is no longer suspense and enjoyment in the unfolding of the story - there will be no surprises. 

A few weeks back, our family was discussing just this - how even in a time of so many unknowns, we don't actually want to know the answers to a lot of our questions. The answers would ruin this journey that we are on. Sure, on the dark days, we'd like to be able to see one, five, ten, even twenty years into the future. We'd like to see where God's plan for my Dad is leading him. The problem is, I don't think those answers would satisfy us as we would hope. We might be severely let down - and that knowledge could very well taint every moment we have from now on. Alternatively, we might be filled with joy - but that joy could rob the joy of future milestones and surprises. 

Our family's story at this moment is "like we are holding in our hands some pages torn out of a book" (Epic by John Eldredge). These pages are a fragment of the story. We aren't sure exactly how the previous pages have led us here and we aren't quite sure where these pages will lead us. What we do know is that these pages are scary and sad, yet they are also filled with so many "slow loved filled moments" (a prayer my sister-in-law has prayed for our family). 

These pages that we hold have the power to cause an emotional roller-coaster. Some hours are great - filled with celebrations about the big (and little) things. Some hours are hard - filled with questions, doubts and fears. The silver lining here is that “...the secret to joy is to keep seeking God where we doubt He is.” (One Thousand Gifts: A Dare to Life Fully Right Where You Are by Ann Voskamp). The great thing about Ann Voskamp's words here is that joy is infectious and it changes your mindset. When you're happy, you reflect on the reason for that joy and give thanks to whatever it is that is causing you so much joy. 

With that I give you a challenge. A challenge to Eucharisteo. Eucharisteo comes from Luke, “And he took bread, gave thanks and broke it, and gave it to them … ” (22:19). In Greek, "he gave thanks" actually reads "eucharisteo". Ann Voskamp calls this Eucharisteo "the crux of Christianity: to remember and give thanks." Why does she believe in eucharisteo's pivotal place in Christianity? "Because remembering with thanks is what causes us to trust; to really believe. Re-membering, giving thanks, is what makes us a member again of the body of Christ. Re-membering, giving thanks is what puts us back together again in this hurried, broken, fragmented world."

“Eucharisteo—thanksgiving—always precedes the miracle.” 

One Thousand Gifts: A Dare to Live Fully Right Where You Are by Ann Voskamp

     - Erin 

Treatment Update

Celebrating!  One week down, three to go.

The Dougler has finished his first week of radiation treatments and seems to be tolerating them well so far. The same goes for chemo. Only 16 more radiation treatments to go! He comes out of the radiation room looking like the lizard man with marks from his radiation mask on his forehead, but that's about the only visual evidence of the radiation at this point.

The Lizard!

During this past Sunday's family meeting, there was quite a bit of nervousness about the upcoming radiation and chemotherapy, as well as a bit of anticipation to finally get the ball rolling. In some ways, it was such a blessing that we got to experience the Christmas season without worrying about radiation appointments and chemotherapy pills. But I also think that it was quite hard on the family to wait for things to get started. For the most part, we are a family of people who spring into action when we get an idea. My Mom would constantly tell us kids to do what needs to be done right when we think about it, instead of waiting. On December 9, we found out my Dad would need radiation and chemotherapy. And instead of springing into action, we had to wait until January 3 for treatment to begin.

Since the treatments have started, I feel like there is a new kind of hope in my family. My Dad has a new schedule to focus on, with the radiation appointments, chemo pills, and all the other supplements he is taking. My Mom seems more calm now that we are doing what needs to be done to slay the beast. The period of waiting was a blessing in that we had time to deal with our emotions. The period of action is a blessing in that we can concentrate on the physical motions instead of focusing only on our emotions.

Every night as I get ready to go to sleep, I think of all the ways in which my Dad has slayed the physical beast that day. I think of the radiation and chemotherapy, killing any cancer cells that may have been left after the surgery. I think about the changes that he has made to his diet that are starving the cancer cells. I think of the supplements that he is taking that flush the dead cells out of his body. I pray that God performs a miracle and fully heals my Dad. And then I pray that God slays the emotional beast for my Dad. I pray for peace, for comfort, and for sleep for my Dad and my Mom. But mostly I pray that my Dad and Mom can feel God's love for them so intensely that it overwhelms them.

We so appreciate all of the prayers offered up for my Dad and our family, and we ask that you continue praying boldly for a healing miracle and for God's closeness and comfort.

- Tara

Storming the Gates of Heaven

The previous blog post by Matthew titled “Safety” ended with these thoughts:

“In my last post, I talked about joy.  The point of this post is peace.

It's been echoed a lot within the family.  We feel at peace.  We are trusting in God.  This is not an easy or safe situation, but His goodness will prevail.

I am going to close with a quote from one of the later Chronicles of Narnia.  And as a homage to C.S. Lewis, I'm going to use it as an allegory/metaphor of the deepest, most desperate prayer of my heart.

""Begone, Monster, and take your lawful prey to your own place: in the name of Aslan and Aslan's great Father, the Emperor-Over-the-Sea."

The hideous creature vanished...""

So ends Matthew’s blogpost.

I have been struggling thinking about what God’s goodness will look like for our family.  This goodness is a twin to God’s providence in our lives:

God's providence is

his almighty and ever present power, 

whereby, as with his hand, he still upholds

heaven and earth and all creatures, 

and so governs them that

leaf and blade,

rain and drought,

fruitful and barren years,

food and drink,

health and sickness,

riches and poverty, 

indeed, all things,

come to us not by chance 

but by his fatherly hand. 

Heidelberg Catechism Q and A 27

Yet, on a daily basis my experience seems to fall more closely in line with the Psalmist:

My God, my God, why have you forsaken me?

You are far from my plea and the cry of my distress.

O my God, I call by day and you give me no reply;

I call by night and I find no peace …

Do not leave me alone in my distress;

Come close, there is none else to help.

Psalm 22:1-2, 11      A New Translation

In my previous post titled “Wrestling with God” I shared some of the tensions that I was feeling in my prayer life and the challenge of submitting to God’s will, especially as I imagine how painful this submission might be for my family.  I have continued to try to make sense of this and have found some of the thoughts of Henri Nouwen to be helpful.

He quotes Abraham Heschel, who describes the spiritual practice of protest, as being an important aspect of spirituality.  He writes: “The refusal to accept the harshness of God’s ways in the name of His love was an authentic form of prayer. Indeed, the ancient Prophets of Israel were not in the habit of consenting to God’s harsh judgment and did not simply nod, saying, ‘Thy will be done.’  They often challenged Him, as if to say ‘Thy will be changed.’”  

Nouwen suggests that perhaps our relationship with God is deepened when we move past submission and can question His decrees. Don Postema extends this thinking in his fine book “Space for God” by suggesting that when we limit our honest emotions with God or “limit our relationship with Him to pious moments and sentimental hours”, a result is that “our spiritual life then loses strength and power and quickly becomes divorced from issues that really matter.”   

I find this helpful … or maybe it is just convenient at this time?  I continue to wrestle …

And now the hard work of wrestling the beast begins!  We have now completed all our consultations with the “experts” – what an amazing array of gifts God provides!  We begin a 4-week treatment cycle on Tuesday that involves concurrent daily radiation and chemo treatment, followed by an additional two weeks of chemo only.  Please pray that these treatments effectively attack the beast and that the side effects are minimal.  

After this initial round of intense treatment, I will have a month of recovery time and then move into a monthly routine of chemo treatment, for between 6 and 12 months.  The beast is a fierce foe.

Please pray without ceasing for God’s healing grace in the months ahead.  I love the image that Matthew Beimers shared with me early on – that he would be storming the gates of heaven! Storm away!

Reach – Robert Hodgell

- Doug