It's a New Day

October 28, 2017

I work in a medical office were older patients remind me of how fast the days and years go by, and to cherish each and every minute. I usually just nod and smile in response. I know what they are referring to; they are approaching a point in their life where time is very valuable. I can already attest to this. Sometimes age has nothing to do with it.

It's already been a few weeks since I shared an update and yet it honestly feels like it's only been a few days ago. My last update was that Ben and I had met with his doctors to go over options for next steps for a secondary treatment plan. We had all agreed that Ben would resume chemotherapy with FOLFOX, after thanksgiving. Up to this point Ben's last chemotherapy treatment was September 13th. They had planned for Ben to receive treatment on the 27th of September but we found out the chemo wasn't working anymore and the doctors wanted to look into our next options. That appointment day was very hard on Ben. He was very unwell. The reception staff and nurses noticed Ben wasn't well and worked together to find him a bed to lie down while we waited to meet with the doctors. When I reflect back on that day I am so grateful for the wonderful staff and friendships in the staff that we have made at the Walker Family Cancer Centre. They all adore Ben and you could really tell as they worked together for him and checked up on him and I. One of the nurses we see there frequently even brought him and I both a warm blanket while we patiently waited. It's the little things that warm my heart.

While waiting to start up his new treatment Ben was very sick. He couldn't leave the bed or keep his eyes open along enough to even hold a conversation with me. I was starting to get really worried about him. We had decided that Ben would resume chemo after thanksgiving, and yet I wasn't sure if that was a good idea or not. Watching him struggle daily was absolutely heartbreaking. My family planned to head to the cottage for thanksgiving this year, after Ben suggested it. For about a week there was no way in my mind that Ben would be able to go. We have an ensuite and there were days he couldn't even get there without experiencing extreme nausea and pain. I have learned that we will always plan to go somewhere, attend something, or meet with someone, and if last minute we can't commit, we don't. So, that's just what we did. I packed the 4 of us up for the cottage, let Ben rest and take all the time he needed and prayed he would be able to join. The day before we left my dad had come by to help me pack up the truck. I had told him Ben would probably not be coming but we packed up Ben's fishing gear and everything in hopes that I was wrong. The next morning I had asked Ben how he felt to go and he still wasn't 100%. He sat on the side of the bed with his head hanging down and tears in his eyes. At that moment I literally felt my heart break. This man, my beloved husband, is struggling. All he wants to do is get up and starting "living" again, and yet it almost seems impossible. Our plan was to leave for the cottage after I was done work. I sent the girls off to school and daycare, went off to work and told Ben to rest and we would make our decision when I got home. As a backup plan I had made sure his parents and siblings were around in the event the girls and I went for the weekend, but someone was here to stay with him. I am thankful for family so close by who would drop anything for us. I finished up at work and when I got home Ben said, "we are going." So, we went!

My handsome hubby soaking up a good day!

There is something about the norther air up there that gives Ben this new life. When he is by the lake with his girls and his boat he is more alive than ever. We spent the long weekend at the cottage with my parents, my siblings and the girls and it was really, really great! Ben listened to his body and took a rest or nap when he needed one, but joined us for dinner, games and of course some fishing and boat rides. I had not seen him this awake in weeks. Ben was also able to escape back up north last week with some buddies and I was so happy to hear that he had a good time. Thank you to the guys who went who took care of him. It just shocks me to see him up there. It's amazing!

Coming home from the weekend up north I did see Ben struggling again to feel good. As always I let him rest in hopes that I would see him come back to life, but that didn't really happen. He spent the next few days in bed and in a lot of pain. I would come home from work and find him asleep on our back deck, or curled up on the couch fast asleep. He doesn't like when people say he "over does it" when he's up north. He's living his life to the fullest and the best of is ability and if that means a few days on the couch after a great time at the cottage, then so be it.

A few weeks ago we met with a new doctor that has been assigned to Ben, a pain and symptom management physician. What a wonderful doctor!!!!! She took her time with us, sat with us and went over everything. Her heart was in that room with us. You could tell just by talking with her. This new doctor will be working closely with Ben to really help him with his pain management and find the best program that will give him better days ahead. I'm glad she is apart of his care going forward. While meeting with her we also had to go through some pretty difficult stuff. She explained to us that one of her other jobs is to make an action plan in the event that treatments stop working. Ben and I are realistic people, we are not new to this thinking, but to have it finally brought up in a doctors appointment hit my heart a bit more. Things like, do not resuscitate papers and questions about hospice or home care were all discussed. Of course, we are not at the point where any of these decisions need to be made right now, it was just a conversation for us to think about. I was glad it was this doctor who did that with us. Her kindness and gentle conversation made it that much easier.

Last fall- 2016

Ben has since completed 2 rounds of the secondary chemo. Ben has now received 28 treatments of chemotherapy combined. Many have asked how he is responding to the new chemo. To be honest, I don't really see a difference. He has  been experiencing an increase in nausea, he says his hands are effected by cold and he does experience tingling and numbness. I think these are the biggest changes. Otherwise, Ben is generally unwell 95% of the time. As time goes by he spends most, if not all of his time in bed or on the couch. He struggles every single day. There used to be a rhythm to his days; 3-4 days after chemo he would be unwell and then he would start to feel better. This isn't the case anymore. The unwell days are blending together whether it is a chemo week or not. I came across a photo of the 4 of us from last fall which showed us enjoying a beautiful sunny day in NOTL. I quickly realized how much more active Ben was even a year ago. The picture suddenly made me feel sad and overwhelmed. I could see the 4 of us having fun and being a "regular family", and then reminded very quickly that Ben wouldn't  even be able to participate in this simple activity anymore. In 1 year I am shocked how much has changed. In 1 year I have watched him thrive to spending every single day in bed. Cancer is a ruiner of life. Cancer takes everything away. The bad and the good.

Watching the love of my life in an absolute struggle every single day, I have decided to take a break from work and be home with him. Up until this point I have been pushing myself to get to work to provide for my family as Ben hasn't been working. There have been mornings where I am rushing to get 2 girls out the door, Ben is vomiting and I am leaving the house for work. It would absolutely kill me to leave. I would sit at work thinking, "what are you doing?". I fought that feeling for almost a year. I started struggling with regret and feeling like a terrible caregiver to him. Yesterday was my last day in the office. From now on I will spend my days with Ben and care for him like I have been wanting to. I am relieved that this decision has finally settled in my heart and in my mind. Some of you might even be thinking, "what took you so long?", but when I am doing everything I can to keep things floating, I was doing what I had to do. I also enjoyed work in the sense that it gave me familiarity and it was the only thing in my life that was "normal". We are EXTREMELY thankful to those who have helped us finically along the way because we wouldn't be able to be in our home if it wasn't for your help. Thank you.

My prayer request today is that Ben has the energy and feels well enough to get up and spend quality time with the girls and I. I pray that this new pain med regimen will work for him and that he is comfortable. I pray that his nausea subsides so that he is able to get up and be apart of every day. I pray that the time we have with Ben is spent in good company, rather than in bed. Sometimes I think, "can't God just give me that if He isn't going to heal my husband?" I know that sounds harsh but that has been a constant thought lately. I will be honest before I sugar coat this all. I don't understand the power of healing. What healing? I don't see any healing and yet I have been on my hands and knees begging God to heal and for a miracle. In the same breath, I am not in denial of what is happening. I have accepted that this is what our life is now, but that certainly doesn't make it any easier. Nevertheless, I am going to keep asking for prayer in the hopes that God can still help us through this. My heart still believes He can.  

Girls at the cottage

prepping dinner- Auntie Cate and Kendal

A successful cottage turkey. Mom & Cole

Treatment Plan- October 2017

October 4, 2017

A week ago I shared with you all the news that Ben's first line of chemotherapy is no longer working. A lot has happened since then. Here is the latest update and what we went through today.

Ben has been experiencing increasing and debilitating headaches. His oncologist booked a CT of his head, which was done today. Ben was at the hospital for 7am this morning. Unfortunately, I was not able to go with him right away as I had to make sure everything at home was running smoothly with the girls. Another unfortunate thing was that Ben was really not feeling well. He actually went to bed yesterday afternoon at 2:30pm, and only really woke this morning to get to his test. Ben sat in the waiting room for over an hour waiting for his scan and feeling very unwell. My in-laws took our youngest for the day while my neighbour took our oldest for me and made sure she got off to school. I then joined Ben at the hospital finding him still sitting in the CT waiting room looking very unwell. My heart broke. His pain was intolerable. He was sitting in that waiting room filled with a dozen other people and it was just too much for him. I work in the health industry and know to be patient, but I not going to lie, I was rather pissed off about the whole thing. Shortly after I arrived they called Ben in for his scan.

Next we met with the oncology social worker to go through a few questions we had written down. Ben really was not well for this. He ended up getting up half way through our meeting to head to the restrooms and I could tell he was struggling to even function at this point. We cut the meeting short and went off to our scheduled appointment with his oncologist. At this point Ben was in a wheelchair but in agony. His nurse, who has been with us since the beginning, saw us and arranged for a bed so that Ben could lay down and rest. Ben really didn't want to stay but he was encouraged to meet with his doctor, especially during this time.

We met with Ben's oncologist who went over the next steps of treatment with us. She also told us that she has assigned a pain and symptoms management doctor to Ben. This doctor will be working one on one with Ben to hopefully get him more comfortable and beating this pain he's been fighting. Right now the pain seems to really be coming from his liver, which as you know is full of cancer. Here are the next steps for Ben's treatment plan...

1. After talking to doctors in both Toronto and Hamilton we have learned that there are no clinical trials available to Ben as second lines of treatment at this time. Ben's oncologist, with the help of these doctors, has decided the best approach at this time would be that Ben continue on with chemo here in St.Catharines on a drug called Folfox. When Ben was first diagnosed this drug was an option for him to start with. We opted for FOLFIRI, the drug that Ben has now become resistant to, due to the side effects of numbness and tingling in his fingers and hands. Ben will receive treatment bi-weekly through his port, just like he has been over the past year. I asked the doctor the hard question today... How long do they think it will work? Textbook says this drug has a 10-15% chance of working for another 5-6 months. Ben and I both accepted this answer and moved on. Seems like we are getting used to this kind of stuff.
2. If and when this second line of treatment no longer works, a third line of treatment will be introduced. This will be that "expensive" drug I mentioned in my last post. We did find out that this drug has been covered under the Patient Assistance Program. (Thanks, God) Thankfully we have more options going forward.
3. Chemo treatments will resume next Wednesday for Ben. Back into the chemo room we go. Although, I'd rather be there with him than having no available treatments at all.
4. His oncologist was able to review the CT scan done this morning and everything is clear.

Ben is now home after a really busy and exhausting morning. He is resting and feeling much better after receiving an injection at the hospital today to help with the pain. So, on we go. Next steps.

Thank you for all the prayers for these treatments and funding to become available for us. We both wanted to apologize if we have not gotten back to you if you sent us a message. We are doing our best to respond! I promise!