I know it has been a long time since my last update but I have a good excuse....we just got back from our epic trip to BC! We flew to Vancouver and over 2 weeks we made our way east and flew back to Winnipeg from Calgary. The trip was amazing! We drove over 2,000 kms and took over 1200 pictures! A few of the highlights were...
-Seeing the magnificent mountains and being in complete awe of the beauty and vastness of God's creation.
-Rob and I got to Zipline in Whistler and it was amazing!
-Spending time with some family I haven't seen since I was 5 and seeing some friends that we haven't seen in a while.
-Going whale watching and being 20 feet from an Orca whale.
-Watching Isaac do a ropes course designed for kids-he rocked it! and Rob getting to do a high ropes course in a forest with huge trees.
-Seeing Takkakaw Falls in Yoho National Park.
-Taking Isaac to Drumheller to see the dinosaur fossils.
-Hiking to the summit of Mount Revelstoke.
-Spending 2 weeks with Rob and Isaac without having to worry about appointments.
-Going up the Whistler and Squamish Gondolas and walking across the Capilano Suspension Bridge.
-Driving through the mountains while the clouds were lower than the peaks.
-Seeing a double rainbow over the mountains as we drove.
-Rob trying some new disc golf courses.
-Being blessed and humbled by the generosity of friends, family and strangers.
And that is just to name a few. It seemed like everyday there was a highlight and something that was new and exciting. Thank you to everyone who was a part of the adventure and to everyone who helped us financially with our trip. It truly was epic and unforgettable and we are incredibly grateful for the experience and the memories. I had been hoping to post some pictures on the blog but it won't work. We are working on making a photo book with our favourite photos so if you ever want to see it just let me know. We will also post a bunch on facebook shortly.
Coming home to the routine of life after a vacation is hard. Coming home to face cancer treatment is so much harder. We arrived home on Wednesday afternoon and Thursday morning we had to be at Cancer Care. Rob had blood work done and then we met with the doctor that deals with chemo. We discussed how the first round went and what side effects Rob had to deal with. We were able to ask for the extra anti nausea drugs we had to get last minute the previous round. Hopefully by being proactive and taking these pills it will help Rob to feel better then last time. The doctor was pleased with how the first round went and although Rob did have a number of side effects these are to be expected and the plan is to proceed with the next round. So round 2 of chemo starts on Monday and unless there is a need to give Rob's body a break they will continue each week until October. This length of time can seem daunting but we continue to just take it all day by day.
While we were at Cancer Care on Thursday we also found out that the chest CT scan Rob had a few weeks ago came back clear. This does not mean we are out of the woods but it is worth celebrating because it means that at this point the cancer has not spread to other parts of Rob's body but is just in his lymph nodes in his neck. Most often the first place this cancer spreads is the lungs so it was good to hear that we are not at that point yet. Rob will continue to have chemo as planned in hopes to shrink the tumor and slow it down from spreading. And we continue to pray that God heals Rob completely and not only shrinks the tumor and takes it all away.
In order to prevent Rob from having tubes hanging out of his arm or having to get poked with a needle each week we decided that he would have a port installed. On Friday morning we had to be at HSC at 8am to have it implanted. Basically they put this little piece of equipment just below the skin by the collar bone which has a tube that is fed through his vein. From now on each time he has treatment or needs blood work done they go through this little port. They gave him a conscious sedation and the procedure only took about 20 minutes but Rob was relieved to have it done. He has to take it easy for the next few days but once the incision heals up he won't even notice it.
Often the hardest thing I struggle with is the question of why? Not why did Rob have to get cancer but why hasn't he been healed yet? We know that we serve a mighty God that can heal Rob completely, however we also know that God does not always answer our prayers how we want Him to or when we want Him to. We have hope because we know God can do a miracle and we ask for that but we walk each day in faith trusting that God will carry us through whatever we face. A very good friend of mine was diagnosed with cancer a few weeks ago and we have chatted a few times and she and her husband are asking God the same questions that we are. It doesn't seem fair to us especially when it is someone who is young and has their whole life to live. We have to remember though that we were never promised an easy life but if we have a personal relationship with God, we are promised eternity in Heaven where there will be no more pain, sickness or suffering. Praise Jesus for this promise!
We don't have control over the future but we can make today, in this moment the best we can and that is what we focus on. Please continue to pray for Rob, Isaac and I and our families. We could not do this without the army of prayer warriors we have so thank you for walking this journey with us.
Love Karen
Saturday 27 June 2015
Thursday 4 June 2015
What does chemo look like?
Well we made it through the first week of chemo and although it was a hard week we are on the other side of it for now. A lot of people have asked me about Rob's chemo and comparing it to last time. In the fall he received one drug every 3 weeks for 3 rounds. The main side effect was nausea which was managed by medication and although he was very tired, it only lasted for a few days. This time it is much more complicated and because the cancer has proven to be very aggressive so is the treatment. This is what a round looks like for Rob this time.
Day 1
-1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
-2 hours of Carboplatin ( this is the one that makes him very nauseated)
-They also give him benadryl, anti nausea and steroid medications.
-After everything is done he is hooked up to a pump (which is the size of a baby bottle) which has a drug called Fluorouricil (AKA 5FU) and he goes home with that for 96 hours.
-All of this takes about 5 hours in total.
Day 5
- Go to Cancer Care to have pump removed as well as blood test
Day 8
- 1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
- They also give him bendryl, anti nausea and steroid medications.
Day 15
- 1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
- They also give him bendryl, anti nausea and steroid medications.
Then the whole cycle starts all over again a week later and we will do this 6 times in total taking almost 5 months.
The first week of the round is the hardest for sure. We had been told that the nausea with these drugs shouldn't be as bad as in the fall so Rob was only given 1 anti nausea drug. This was not the case for Rob though. He was very nauseated and couldn't keep any food down at all. By Friday last week I called the nurse and we were able to get a prescription right away for 2 more types of anti nausea pills to help him through. The good news is that now we know how it makes him feel so we will be able to get those additional drugs right away for the future. Rob was also very tired last week and slept more then he was awake for a few days. Sleep is good for him and he was able to get comfortable and get some good rest...I just had to keep Isaac quiet!! He still needs a nap most days now but only for a short time. The drug that he receives every week has one main side effect that is a rash that is almost like acne. This is a little annoying but it is something you can live with and it doesn't affect his daily activities. The only thing that we have to watch for is that the sores don't get infected. The other side effect he is really feeling is from the pump and is sores in his mouth. I had read about the possibility of these and hoped Rob would not get them. When he said he had a sore in his mouth I knew right away what it was from. The sores seem to be getting worse each day but hopefully he gets a break from them before the next round starts. He is also going to start using "magic mouthwash" again so hopefully that helps. Side effects are no fun but at least we know what is causing it and hoping it doesn't last long. So right now we will enjoy a little time with short naps and no nausea until the next treatment starts.
One of the good things are all the extra drugs they give you on day one is that you feel pretty good that day and then crash hard the next day. After a long day at the hospital and only an hour at home to eat something Rob was still feeling well enough to come to Isaac's soccer game that night. Isaac was very proud to have his dad there that night and even kicked the ball together for a few minutes.
Since my last update Rob has had some pain relief...praise Jesus! He was able to adjust the amount of pain meds and although still has some pain it is much more manageable. He is also seeing Dr Kevin almost everyday and the adjustments are helping to relax the muscles. He has been able to sleep for more then 2 hours in a row which also helps him feel better.We are very thankful for this and continue to pray for even more relief. We have a follow up with the pain management doctor this week to see how things are going.
Yesterday morning Rob went to have a CT scan of his chest. The most likely first place that his cancer will spread is his chest and lungs so they wanted to check right away. Please pray that this scan comes back clear and that there are no signs of any cancer in his lungs or chest.
We continue to take each day as it comes and try to live to the fullest. Even through the tough times we see evidence of God and are so grateful that we have a Heavenly Father who loves us and cares for us. Thank you for all your love and support...God uses many of you to bless us each day.
Love Karen
Day 1
-1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
-2 hours of Carboplatin ( this is the one that makes him very nauseated)
-They also give him benadryl, anti nausea and steroid medications.
-After everything is done he is hooked up to a pump (which is the size of a baby bottle) which has a drug called Fluorouricil (AKA 5FU) and he goes home with that for 96 hours.
-All of this takes about 5 hours in total.
Day 5
- Go to Cancer Care to have pump removed as well as blood test
Day 8
- 1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
- They also give him bendryl, anti nausea and steroid medications.
Day 15
- 1 hour of Cetuximab and then an hour of observation to make sure he doesn't have an allergic reaction.
- They also give him bendryl, anti nausea and steroid medications.
Then the whole cycle starts all over again a week later and we will do this 6 times in total taking almost 5 months.
The first week of the round is the hardest for sure. We had been told that the nausea with these drugs shouldn't be as bad as in the fall so Rob was only given 1 anti nausea drug. This was not the case for Rob though. He was very nauseated and couldn't keep any food down at all. By Friday last week I called the nurse and we were able to get a prescription right away for 2 more types of anti nausea pills to help him through. The good news is that now we know how it makes him feel so we will be able to get those additional drugs right away for the future. Rob was also very tired last week and slept more then he was awake for a few days. Sleep is good for him and he was able to get comfortable and get some good rest...I just had to keep Isaac quiet!! He still needs a nap most days now but only for a short time. The drug that he receives every week has one main side effect that is a rash that is almost like acne. This is a little annoying but it is something you can live with and it doesn't affect his daily activities. The only thing that we have to watch for is that the sores don't get infected. The other side effect he is really feeling is from the pump and is sores in his mouth. I had read about the possibility of these and hoped Rob would not get them. When he said he had a sore in his mouth I knew right away what it was from. The sores seem to be getting worse each day but hopefully he gets a break from them before the next round starts. He is also going to start using "magic mouthwash" again so hopefully that helps. Side effects are no fun but at least we know what is causing it and hoping it doesn't last long. So right now we will enjoy a little time with short naps and no nausea until the next treatment starts.
One of the good things are all the extra drugs they give you on day one is that you feel pretty good that day and then crash hard the next day. After a long day at the hospital and only an hour at home to eat something Rob was still feeling well enough to come to Isaac's soccer game that night. Isaac was very proud to have his dad there that night and even kicked the ball together for a few minutes.
Since my last update Rob has had some pain relief...praise Jesus! He was able to adjust the amount of pain meds and although still has some pain it is much more manageable. He is also seeing Dr Kevin almost everyday and the adjustments are helping to relax the muscles. He has been able to sleep for more then 2 hours in a row which also helps him feel better.We are very thankful for this and continue to pray for even more relief. We have a follow up with the pain management doctor this week to see how things are going.
Yesterday morning Rob went to have a CT scan of his chest. The most likely first place that his cancer will spread is his chest and lungs so they wanted to check right away. Please pray that this scan comes back clear and that there are no signs of any cancer in his lungs or chest.
We continue to take each day as it comes and try to live to the fullest. Even through the tough times we see evidence of God and are so grateful that we have a Heavenly Father who loves us and cares for us. Thank you for all your love and support...God uses many of you to bless us each day.
Love Karen
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