Since my last update on December 8th we have only been to Cancer care once and have enjoyed some free time. It seems crazy how quickly time passes when you don't have something scheduled every day. Rob and I were talking about how lots of people around us are so busy this time of year running from event to event but we find ourselves in the opposite place. The one Christmas party we were going to as a family was cancelled....I am sure the other families were thrilled to have a quiet night at home but we had been so excited to get out of the house! With Rob's free time, as he feels up to it, has been doing small things around the house. The other day while I was at work he hung a chandelier that had been on his to do list for a long time. I was excited to come home and find it up and he felt good accomplishing something.
Rob has been feeling better and better each day. We are pretty sure his side effects peaked in the week after his treatment ended. The ringing in the ears is almost stopped and the chemo brain is gone which is good news. He is still up through the night having to clear his throat but it isn't as often. Eating is slowly getting better although he still needs a modified diet and it takes him almost an hour to eat a plate of food. The good news is usually he doesn't have to rush anywhere so that is ok!
On December 11th we met with Dr Butler to follow up from radiation treatment and he was pleased. During treatment we were told that things would start to get worse but didn't seem to experience what they said until right at the end. Rob still had thrush at this point but since then we switched medication and we are hoping it will be gone by the end of this week. All in all things seemed to be healing from the radiation treatment and Rob is feeling much better. When I get asked "How is Rob?" I find it tough to answer. Considering what he has gone through he is doing pretty well....on the other hand as an average 31 year old man he is not doing so good. We look forward to when things are back to "normal" and he is able to work and do things a normal 31 year old would do. We are not sure when that will be but we look forward to it. In the meantime we are just enjoying some extra time together.
Rob also had a follow up with Gina the dietician on the 11th. She was very happy with how Rob got through treatment. His weight only fluctuated about 5lbs and for what he went through that is very good. She encouraged Rob to continue doing what he is doing and he will be back to where he was.
January will be full of follow up appointments with all of his doctors ( he has a lot!). He will also have a CT Scan on January 16th and will find out the results on the 29th. The CT scan will give them a base line for how things look and will hopefully not show any growth (that is basically how they know if the treatment worked). We continue to pray that Rob is healed and that he will not have any cancer grow back. The next year is the most crucial but all we can do is wait and see while we pray faithfully.
As many of you know Rob's sister Katherina and her husband Joel were expecting their first child at the start of December. We are thrilled to share that Jonathan Pierre Scott Caby was born on December 13th and he is perfect. The day after Rob was done his treatment I jokingly sent Kat a text to read to my nephew, that was still in her tummy, saying thank you for not coming too early because we needed Grandma and Grandpa's help but it was ok for him to come now! We were thankful to have the help with Isaac during that last week and it would have been much more complicated if that little guy had come early. The other day we brought Isaac over to meet Jonathan and he thinks he is pretty cute although I think he is excited for when he is bigger and can play!
Christmas looks very different for us this year than it usually does. We would normally be heading to Ontario to spend Christmas with my family but we didn't know how Rob would be feeling so we cancelled our trip. For the first time we will have Christmas morning with the 3 of us in our own home! When Isaac first found out we were not going to Ontario he thought we were missing Christmas morning because that is all he ever knew. We quickly reassured him that Santa would know he was at home and not to worry. On Christmas afternoon we will head over to Rob's parents and celebrate with them. Then on boxing day my mom is going to fly in for a few days and have a little time with us. I am really going to miss seeing my family and friends in Ontario but making new traditions is not so bad either.
As much as Christmas is a time of festivities, shopping, giving, receiving, eating and all of the other things that make up the chaos, we want to remember that Christmas is about Jesus' birthday. We have been talking to Isaac a lot about the true meaning of Christmas and want to make sure he grows up to know the reason we celebrate. May you and your family have a great time together this Christmas and that you take the time to celebrate our Saviour's birth.
Merry Christmas and a New Year full of blessings.
Love Karen, Rob and Isaac
Monday 22 December 2014
Monday 8 December 2014
Ringing of the bell!
Last week was a tough week and even though there were things to celebrate there were many hard days to get through. As you know Rob had his final 3 radiation treatments to complete his 33 planned. There is a tradition at cancer care to ring a bell when you complete radiation. I was able to be there and get a video of Rob ringing the bell and the technicians clapping and cheering him on. What a relief to be done the daily visits to cancer care! Unfortunately that did not mark the end of the side effects, in fact they could continue to get worse before they get better. This has been very tough on Rob this week. He is having a hard time eating, is up a number of times through the night, as well as he has a hard time being away from home for any length of time because he needs to clear his throat. On top of this he also had his last chemo last Tuesday. The side effects which include fatigue, nausea, upset stomach, no appetite to name a few usually last about 5 days although this time they seem to be lingering longer. He also experiences something they call "chemo brain". Basically it is like he has brain fog and he can't make simple decisions. This is very frustrating for Rob as well as for myself. I try to make his decisions when I can but that is not always possible. Each round of chemo he also gets a ringing in his ears for a few days. This is a result of the chemo attacking the cells and nerves. This past Sunday Rob had to stay home from church because the noise of many people talking not to mention the music is just too much for him. Thankfully this only lasts for a few days and by next Sunday the ringing should be gone.
With treatment being completed we move into this weird time. Rob is no where close to being ready to go back to work but he will not have as many appointments. He will still see all of his doctors on a regular basis but we are in this time of recovery and waiting. They will regularly scan Rob to see if there are any changes and monitor him very closely. His cancer is not one that now that treatment is done they can do a test to know that it worked. Instead they hope it got rid of all the cancer cells and they will watch to see if anything grows. Please continue to pray for us as this time can sometimes be harder just waiting. We don't want to sit and worry but instead we want to live life to the fullest we can. As Rob feels better each week we are going to make special time as a family and enjoy the time together.
Since treatment started so quickly after his second surgery he wasn't able to fully recover from the surgery. After the first surgery Rob had months to get his tongue and flap moving and he was able to eat pretty well at that point. The second surgery was like taking 10 steps back and now with treatment over he can work on that. He will work along side Speech Language Pathology and will be given many exercises to do every day. Eventually he will also have to have the hair removed from the flap (this was cancelled in September), look at getting teeth and then relearn how to eat and talk with new teeth.
Our biggest prayer request right now is for complete healing. No one knows how many days anyone has but we pray for a full lifetime together and to enjoy watching Isaac grow up. We trust in a God that heals which allows us to walk forward each day in faith. We both have our fair share of doubt and fear but we never stop relying on peace, strength and healing from God. I am not sure how one could get through something as terrible as cancer without God, without faith, and without an army of prayer warriors and support from church, friends and family. For all these things we are incredibly grateful. When things seem to hard to bare something as simple as a phone call, an email, a letter, a meal, a gift card, etc. can make things feel better even for a few moments.
Thank you for each one of you who care for our family.
Love Karen
With treatment being completed we move into this weird time. Rob is no where close to being ready to go back to work but he will not have as many appointments. He will still see all of his doctors on a regular basis but we are in this time of recovery and waiting. They will regularly scan Rob to see if there are any changes and monitor him very closely. His cancer is not one that now that treatment is done they can do a test to know that it worked. Instead they hope it got rid of all the cancer cells and they will watch to see if anything grows. Please continue to pray for us as this time can sometimes be harder just waiting. We don't want to sit and worry but instead we want to live life to the fullest we can. As Rob feels better each week we are going to make special time as a family and enjoy the time together.
Since treatment started so quickly after his second surgery he wasn't able to fully recover from the surgery. After the first surgery Rob had months to get his tongue and flap moving and he was able to eat pretty well at that point. The second surgery was like taking 10 steps back and now with treatment over he can work on that. He will work along side Speech Language Pathology and will be given many exercises to do every day. Eventually he will also have to have the hair removed from the flap (this was cancelled in September), look at getting teeth and then relearn how to eat and talk with new teeth.
Our biggest prayer request right now is for complete healing. No one knows how many days anyone has but we pray for a full lifetime together and to enjoy watching Isaac grow up. We trust in a God that heals which allows us to walk forward each day in faith. We both have our fair share of doubt and fear but we never stop relying on peace, strength and healing from God. I am not sure how one could get through something as terrible as cancer without God, without faith, and without an army of prayer warriors and support from church, friends and family. For all these things we are incredibly grateful. When things seem to hard to bare something as simple as a phone call, an email, a letter, a meal, a gift card, etc. can make things feel better even for a few moments.
Thank you for each one of you who care for our family.
Love Karen
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