Stand firm in faith; be courageous; be strong. - CT Scan Results.

September 27, 2017

Today Ben and I had our much anticipated visit with his doctor to review his CT scan results. Something told us both going into it that it wouldn't be good news. Ben has not had many good days over the past few weeks and something didn't feel right. They say usually when your gut is telling you something, it's right. Sure enough, we were given news today that I really wish I didn't have to share.

Ben's cancer has progressed in his liver and lungs. His CEA marker has increased, indicating the cancer has in fact gotten worse. Ben has become resistant to the first line of chemotherapy treatment that he has been receiving over the past year. It is no longer working for him. The news didn't really surprise Ben or I. Matter of fact we were both kind of excepting it. Something just hasn't been right and there was no way the CT scan was going to show improvement, at least that's what Ben and I thought. Still, the news does come with a lot of heart break and a lot of unknowns. Since the chemotherapy treatment isn't working Ben did not do his round of chemo today. Instead, we spent the next while talking with his nurse and doctor about our next steps. Here is the plan going forward. I've tried to break them down simply (maybe this will even help me)

1. Ben will stop his current chemotherapy treatment here in St. Catharines.
2. There is another drug that might be available as a second line of treatment. This drug is the #1 choice for next treatment suggested by his oncologist. But it is $10,000/ month. We have learned that this drug is not covered by our current private insurance company. A Drug Access Facilitator has been assigned to Ben's case to see if this drug could be covered by the Patient Assistance Program with compassion care. Clinically he does qualify but we will have to wait to see if they will for sure help. We have sent through an application for this and will hopefully hear within the week. This treatment would be given to Ben in St. Catharines. Please pray this becomes available to him!
3. IF this treatment is not an option, we will need to find another option. Ben's oncologist is contacting Sunnybrook in Toronto to search for any clinical trials.
4. IF the #1 choice of treatment isn't an option, and Sunnybrook does not have any clinical trials to offer Ben, he will be started on a second line of treatment here in St.Catharines which will be given the same way, every other week by his port and bottle.
5. We will meet with Ben's doctor again next week to make our decision based on what's available to us.

As you can see there are a lot of "IFs" here. So, we wait it out again until we hear what our next official steps are. Treatment will not cure Ben, as I have mentioned before. Any treatment going forward is given to prolong Ben's life here with us.

As I sit and write all of this down I feel sad reflecting on the past year and where we are today. Obviously this isn't what we wanted. It was only 15 months ago that Ben received his initial diagnosis and only 7 months ago we thought Ben was going to qualify for a life changing surgery, and now we are staring down the road of clinical trials and second line treatments. How and Why? We could ask those questions until we are blue in the face. The only thing we can continue to do at this point is keep looking to our God to keep us going and to comfort us. We will continue to pray for more days together, more good days for Ben; that he feels well to participate in activities and outings with me and the girls. Thank you to those who reached out to us today and remembered we were receiving these results. Thank you for keeping us in your thoughts and prayers. Please continue to stand with us in prayer.

1 Corinthians 16:13 

Be on your guard; stand firm in the faith; be courageous; be strong.

 

Just when I thought He wasn't looking

September 22, 2017

I have to chuckle as I go back to my last post which prematurely said goodbye to summer and welcomed fall. 30+ degree weather at the end of September, we’ll take it! Our family has been able to escape to the cottage a few more times and to be honest we’ve had the best beach days this month!

I felt compelled to write a post after experiencing some pretty crazy “God moments” this week. If you read my last post you will know I’ve been stuck in a season of doubt, anger, and depression. Getting out of this has been challenging. I’ve kind of withdrawn myself from people a bit. (I apologize if you feel this from me) With all of this I have been watching my husband’s health decline while raising two very busy kids. I mean, can you blame me for being a bit mad at God right now?  It’s been on my mind a lot lately that things will get worse before they get better and I’ve been just downright pissed off about that. But in God’s typical fashion in my life He has shown Himself to me a number of times this week and I just had to share this.

Painting done by ReChic Studio of Ben and the girls. 

As I sat in my “self pity”, God introduced me to a woman who stands in my shoes; a young mother with a husband battling stage 4 cancer. The difference? She not only has 2 children, but 4, she has no family or community close around her like we do. As I began to talk to her and share stories it immediately dawned on my how grateful I really am for the huge support group that stands with us. My heart broke for this woman who explained to me that she’s been bringing all 4 of her children to her husband’s bi-weekly chemotherapy treatments. I can’t even imagine that! (Thanks for the reminder of my many blessings, God) My week went on but I still felt down and out. A year going on this path really is starting to feel downright exhausting and to be honest I was starting to feel alone and “forgotten”. Every day I see my husband battling for his life and I’ve been doing my best to keep going for him and the girls. Just as that thought entered my mind I literally had 4 messages pop up in my inbox offering their hands to help, encouraging me in prayer, offering to bring a meal for our family AND pictures and videos of a recent fundraiser that had taken place to help Ben and I out during this time. (Okay God, I see you—I feel you – THANK YOU) I find it rather “weird”- for lack of a better word, that those messages were sent to me in a time of feeling defeated and empty. I had an “ah-ha” moment, sitting there reading each message and realizing very quickly that I have not been abandoned, I will never be abandoned, and that I need to have faith in my God to get me through this. (Yes- this is easier said then done, of course, but He just showed me this!) How do you look away when God shows Himself to you? How do you question His love for you when He helps you through your darkest days? It’s funny, as I write that I am actually reminding myself to come back to this post to remind myself of these things. I couldn’t continue on my day without sharing this with you. I know there have been a lot of prayers said for us and I needed to share how I felt God this past week.

In addition to this post, many of you have asked how Ben is doing lately. Let’s just say Ben seems to be having more “bad” days then good lately. He continues to struggle with pain and discomfort in his legs and back. We’ve noticed his legs, face and neck really swelling. This makes it very uncomfortable for him. Ben usually crawls up on the couch or in bed and spends a lot of his time there now. He battles nausea and vomiting, and stomach pains. I absolutely hate watching him go through this. I feel completely helpless. Brooke and Kendal have been so good with waking up in the morning and giving daddy a big hug! Ben loves this. So do I. He had his repeat CT scan on Monday and we are anxiously awaiting these results. We will most likely have these by Wednesday. I will post an update as usual.

Thank you for those who reached out to me this week. Additionally, thank you to those who helped and participated in the fundraiser for our family. Ben and I are feeling very much cared for and supported by you. You all continue to show us what real community, faith and friendship looks like. I can only hope to give back like you have given to me.  

Goodbye Summer

September 2, 2017

Chocolate chip pancakes with daddy!

Well, there goes summer.... just like that! Our family really did have a nice summer together. Time spent with friends and family at the cottage was memorable and relaxing, dinners and late night fires on our back deck had with friends made us feel grateful. Ben and I went into this summer doing our best to create as many memories as we could. We know that over the next year things will most likely change very drastically and aren't even sure we will be able to get back to the cottage like we did this summer. Thank you to those who dropped their busy schedules for us to help create those memories. Thank you to those who watched the girls for us so that Ben and I could spend the time together as well. We know everyone lives busy lives but we are continuously thankful for those who step back and take the time to be with us right now. After all, this really has been the hardest year of our lives.

It's been on my mind and heart a lot how fast this year just went and how scared I am to watch another year go by. We really have not a clue what next summer brings. We've been told by Ben's doctor that she wants to see him live for another year. Can you image being told those words about your spouse as you go home and hold your babies? Your perspective of life really changes. Things that seemed important at one time really aren't that important at all. I feel like our life as "The Janzen Family" is on a clock. I do my best not to live that way, but I can't deny that these are real feelings and thoughts that go through my mind a lot, more now as the year has passed and as Ben continues this battle with cancer.

Ben completed his 25th round of chemotherapy treatments this past Wednesday. That is a big number. I actually had a memory on my Facebook page show up from 1 year ago documenting his 5th chemo treatment. I couldn't believe I was getting a "memory" of this already. The chemotherapy hasn't effected how Ben looks. Matter of fact most people who see him say how great he looks! (which he does!) He has gained a lot of the weight he had lost back, plus some, and is looking quite healthy at first glance. But the fact of the matter is Ben is fighting stage 4 cancer regardless of looking "good". I think some people look at him and think he looks good, and so they think he is doing well. He's even been asked if he's doing side jobs while home on disability. (I'm not sure how to comment on that one....) I guess this is just a reminder to those who look at Ben and assume that things are fine, to go ahead and ask him how he's doing that day or how he's been doing because he really does look better than he's feeling. Ben has been able to manage a lot of his symptoms with medications. You would fall off your chair if you saw the bag of medications he takes daily, just to help him get through the day. I think his biggest challenge right now is fatigue, weakness and nausea. He does his best to get through this, he never complains, ever! I always say to think of yourself with the worst cold or flu you've ever had, and then times it by 100. That's what Ben is fighting, almost daily.

 The last appointment with Ben's doctor we reviewed his CT scan (this would have been in August- I posted this on my last blog post). The scan showed no progression of disease, but no change in disease either. To me this sets off alarm bells in my head. No change? So the chemo isn't doing anything? You see, cancer is smart. It starts to learn what is treatment and fights against it. Because there was no change in disease in his liver, lungs or colon, Ben will repeat this CT scan within the next few weeks to see if the cells have changed or not. I'm anxious about this scan. In my mind this is where things start to shift and change. This is where treatment plans might need to change, where our comfortable routine changes and things may effect him differently. We will post the results to the scan when we have them.

I've been struggling a lot with God's plan for us. I've been angry with God and have been feeling alone in my walk. Can he not see us struggling? Those who are closest to me will know I have been battling a very hard and long depression and some days find it extremely difficult to even get out of bed. I sleep a lot, and when I'm not sleeping I'm barely functioning or willing to participate in everyday life. Socializing with people has become exhausting for me. Parenting two toddlers has become very difficult for me. I don't understand why this is happening to us all at once, why the timing in our life seems so shitty and I feel like God is just standing on the sidelines right now. I'm sharing this very personal experience with you all because I recognize this as my weakness and know the power of prayer and am asking for those who read this blog to pray for me, and Ben. I've been struggling to bow my head in prayer. So, I ask for you to please say a prayer for us. I know the community we have behind us and I know that prayers will be said for us. I still believe God is with us, it's just really hard to see right now. In addition, please do not be "afraid" of Ben or I if you see us. Please don't feel like you can't approach us because you don't know what to say. I see this more and more and actually really appreciate being asked how we are doing. It is a reminder to me that you are with us and care for us. We are very open people and lean on others to help us right now.

Daddy and Kendal in her new ballet outfit <3

The fall season is coming and we have a few things to look forward to. We have a few trips booked, (pending Ben's health) but these trips give us something to look forward to and excitement for the future rather than dreading the days ahead. The girls are both registered for dance classes and swimming classes. It'll be a busy time for me I am sure, but I'm trying to plug myself into the girls and go into this reassuring myself that I can do all of this and to ask for help if I need it. The girls continue to not understand what is really going on and so we try our best to keep life as "normal" as possible for them. I'm excited for them and look forward to watching them grow in their new activities.

Well, I think I did my best to give you all an update on what's been going on over here. Best of luck to all the kids going back to school on Tuesday. As usual, I look forward to seeing all the photos of their first day back! As I wrap up this post I continue to ask for prayer for us during this time. I ask specifically for prayer for Ben, that he has the strength to get through each day, that he feels better and is able to participate with me and the girls more and prayer that both of our spirits are lifted during this time.

Dancing away!

loving life out on the boat at the cottage

2017 NOTL soccer 

St. Davids Carnival with our friends