April Update

April 28, 2017

Time is going by so fast. I can't believe we will soon be faced with the summer weather. The 27+ degree weather this week was awesome!

Round 15- April 19th.

 Ben is now back into the routine of receiving his chemotherapy treatments. His first round back was completed on April 5th, just 3 days after returning home from our vacation to Mexico. Treatment didn't go so well for Ben that week. He spent 5-6 full days in bed. I had lost my husband completely over those days. I couldn't even talk with him, he was so incapacitated from his medications and the chemotherapy. His second week back, completed April 19th, was so much better! It's incredible how different he was this round. I'm shocked by how active he has been! It's a blessing to watch him be up and outside doing the things he loves. For that I thank God.  

Ben's first round of chemo hit me like a ton of bricks. I couldn't believe we were back into this. I was alone in my weakness and my thoughts consumed me. That week I hit the lowest point of this journey so far. I was mad that the surgery wasn't possible and that we had to go back to the chemo room. As caregiver and wife I felt myself losing control of my own well-being. I shared a link on Facebook this week and thought I would share it here on the blog as well. The article talks about unconventional grief, grieving someone alive as well as anticipatory grief. If you are reading these thinking, "what on earth is she talking about?",  I encourage you to click on the links below and take a read.

Uconventional Grief: Grieving someone alive

Anticipatory Grief

With this nice weather I have found a big change in Ben. He is up and doing things! With that being said, he does tire out a lot faster than he used to. We have had a lot going on since I last posted so I thought I might break it down easier for everyone to read. Here we go... 

1. Ben's biggest hurdle right now seems to be leg pain. This occurs quite frequently and comes any time of day. The leg pain is disabling. It can sometimes leave him having to be couch bound. Sometimes it's so bad he says he has to lift his own legs to move them. I am asking for prayer for Ben, specifically with his leg pain right now.

2. Ben has a home nurse now coming at least once a week through Palliative Care North Niagara. At first the words "Palliative" scared us. Ben didn't feel the need to explore that as an option until we found out what this service actually does for him, and me.  Palliative care is defined as an approach that improves ones quality of life of patients and their families facing a life-threatening illness. PCN will be working with Ben to help relieve his suffering with pain management and any other problems that arise. They offer many resources including help with financial questions we may have, help with wills or community support. They have set Ben up with a home wheelchair, walker and cane for the days he finds challenging to be mobile on his own. This service has been free for us and we are grateful for this. Something we once were scared of partaking in has become some bit of comfort for us both. Ben has also received an Accessible Parking Permit. Some days it's hard for him to walk from room to room let alone from one end of a parking lot to another, so this will help him on the days he wants to reserve that energy for something else :) 

Easter with Ben's brother Matt, and wife Ellyse

3. Our family time really has become the most important time in each day. Celebrating Easter this year with family really meant a lot to me. Spending that time celebrating Jesus' resurrection and watching the girls really interested in the true meaning of Easter made my heart explode with gratefulness. I ended up working a lot that weekend, but Ben was able to take the girls to a local church for an easter egg hunt. I love that they are having fun with their daddy! We spent the rest of the weekend with family and enjoyed the fact that Ben was actually doing pretty well! I will be taking a break from my business that I run from our home for the summer to enjoy this time with Ben and the girls. There has been a bit of guilt about the time I spend working rather than enjoying it with them, but also guilt about being the main provider right now too. I've given this to God and I don't doubt He will help us and help me get my business back off the ground when the time is right. What is important to me right now is to spend the summer, the beautiful sunny days outside playing with the girls and Ben and to take full advantage of the days he is well! 

This coming Wednesday is another chemo week. We will be meeting with Ben's oncologist again at which point we will likely be talking about when Ben's next scan will be. The plan at the beginning was to repeat his scan after 3 months of treatment. We will let you all know when that takes place and what the results show. Thank you for those who continue to go through this journey with us. Keep praying!! I still believe in miracles.  

Easter egg hunt!

Story time with daddy

Daddy and Kendal rolling the backyard!

Matt, Ben's brother, helping Ben with the yard work. 

Here we go...

April 5, 2017

Well, here we go again, back into the chemo room. It was only a month ago we were talking about a potential surgical operation to remove this cancer, only to be told that the cancer had spread and is too aggressive. I didn’t think we would be back in this room. Coming in today was a bit harder than I anticipated. Walking down the hall of pods filled with people sitting in recliner chairs receiving chemotherapy treatments just doesn’t seem right. How and why does this happen to people? We are back to planning life around every other week chemo appointments. The nursing staff and doctors were “happy” to see us. We were greeted with smiles and friendly hellos from familiar faces, which made coming back into this a bit easier. One of my second cousins was actually Ben’s nurse today so it was nice to have people by our side who we knew. To date Ben has now completed 14 rounds of chemotherapy, including todays round, and 5 rounds of radiation.

Round 14

We met with Ben’s oncologist today in consultation. Ben is back on the same chemo regimen as before. The side effects should be the same and we’ve been told Ben shouldn’t lose his hair since he didn’t before. (Everyone reacts to this stuff differently) The main goal this time around is symptom control. Ben is now on chemo indefinitely, meaning he will be on chemo until it doesn’t work. Chemotherapy will not cure Ben and surgery is no longer an option so we will be working with the doctors and nurses to control his symptoms the best they can while he is receiving treatment. Over the past few months Ben has been experiencing increased pain, lack of motivation to participate in daily activities, increased nausea and tiredness. We are hoping that chemo will actually improve some of these symptoms along with the proper medications. I was really proud of Ben coming back into this today. He seemed to have a positive attitude and a smile on his face. You truly are amazing, Ben.

It’s been awhile since I’ve actually posted here and so I wanted to fill everyone in on some of the great things that have been going on in our life too.

At the end of March we had friends and family over to celebrate not one, not two, not three, but FOUR birthdays! Our youngest daughter, Kendal, celebrated her 2^nd birthday. She was so excited! “Kendal, how old are you now?” “twwoooo”, she would say with a big smile on her face. We also celebrated my dad’s birthday, Ben’s dad’s birthday and my grandfather’s birthday. Hello March birthdays! Below are some of the photos taken during the birthday celebrations. My favourite is the photo of Ben and Kendal blowing out her candles.

Make a Wish!

March 26^th our family flew us out to Cancun, Meixco! After what was probably the hardest and most heartbreaking couple of weeks of our lives so far, we were told to book a trip and go and relax!  This was also suggested by Ben’s doctor before he started back up on chemo so we were very glad we could go. This vacation was probably the best vacation that Ben and I have ever done alone. We didn’t realize how much we needed that time away until we were there. I jumped into the pool and just cried happy tears. I felt so relaxed. I hadn’t had that feeling in over a year, at least since Ben’s initial diagnosis. At one point Ben looked at me and said, “Amy, I feel amazing. I've had to remind myself that I’m even sick”. Like, WOW! We’ve been on vacations before, but this is the first time in our lives where we have experienced the true definition of relaxation and peace. I didn’t realize how maxed out we were. My parents and Ben’s parents didn’t hesitate to help us with the girls. All of them dropped everything and rearranged their schedules just for us. They spent 4 nights with Ben’s parents and 4 nights with my parents. Honestly, we have the best parents ever!  THANK YOU!  Not only did they watch the girls for us while we were away, but Ben’s parents continue to take Kendal and/or Brooke every Wednesday for us, chemo day or not, to lend us a hand, and drop everything anytime to help. My mom has also started coming over the mornings I work to help me get the girls up and out the door. This has allowed me to get to work without panic or anxiety from the busy morning routine. Ben is also able to get the rest he needs in the mornings, rather than worrying about me and the girls. Meanwhile, my dad has been busy getting a fishing boat ready for Ben to use this summer. (One of Ben’s favourite summer activities)

Our favourite place to go for lunch. Right on the ocean.

I am still in awe of how amazing our family and friends are. Ben and I sometimes talk about how we believe this is God’s way of allowing us to enjoy this time together. I find myself repeating myself with just how blessed we are, but it’s so true!

Another exciting thing in our life right now has been welcoming my best friend and her husband’s new baby boy. Another March baby! (That makes 5!) Watching new life come into the world while watching your young husband battle a deathly illness is exceptionally emotional. I held little Graydon and could only think of how much life he has ahead of him. I said a little prayer over him, that life wouldn’t be so hard for him and that God would bless him with health and happiness. I am happy for my friends and look so forward to watching our kids grow together.

Brooke, Kendal & Graydon

So, we continue down the road of doctors’ appointments and chemotherapy treatments. But we know we are not alone. We are more confident to ask for the help we need when we need it and are continuously thankful for those who lend out their hand. We continue to receive meals the days I work to help with the after work rush; I always say I am going to create a cookbook filled with all of these amazing recipes! Thank you! Thank you for all the cards and continuous e-mails or messages we receive. We couldn’t go through this journey without each and every one of you. My biggest fear sometimes is being alone, and I have never been alone through this journey. My mom gave me a book the other day filled with quotes for calming and soothing refections to find peace. I try and read one or two pages a day. I came across this one and it really hit home for me: "Making things easier for yourself should never make you feel guilty". Thank you for those who continue to make things easier for Ben and I and our family. We are so grateful!