Chemo....again.

This week has been a very tough and emotional week.  I sometimes am not sure how each day I have gotten out of bed and embraced the day.  I have started to say to myself each morning "This is the day the Lord has made, we will rejoice and be glad in it."  Each day we have is a gift and we need to enjoy it even if our circumstances are hard.  That being said even in the moments of tears, and sadness there have still been moments of laughter and joy and we cling to those.  We pray everyday for God to do a miracle in Rob's body and that the doctors will be blown away by what God has done. 


On Wednesday the phone rang at 8:20am.  Without even looking at the phone I knew who it was and I dreaded what he would say.  It was Dr.Nason and he was calling to say the needle biopsy has come back with positive cells for cancer.  As much as we knew this was likely we were hanging on to the hope that maybe they were wrong and that is what we were praying for.  It was a tough day just realizing now what we faced and knowing that Rob's cancer is now considered incurable. 


This morning we went to Cancer Care to meet with the medical oncologist (chemo doctor) and Rob had blood work done.  We knew that surgery was not an option but thought that some radiation was a possibility but today we learned that is not the case.  Chemo is our only option and it is going to be tough.  The goal of the chemo is to shrink the tumor and prevent it from spreading quickly and to take away pain to improve Rob's quality of life.  The doctor we saw today is more of a pessimist than some of the other doctors and it doesn't always sit well with me.  We know the reality of our situation but we also know our God is bigger and if it is His will he can heal Rob and give us many more years together.  Rob is ready to fight this as hard as he possibly can and we hope and pray that this doctor will be shocked at the outcome. 


Chemo will be 6 cycles that are 3 weeks long each without a break in-between.  He will have 3 different drugs this time and so the side effects with be more intense.  He will have to go for chemo every week but each week will look a little different and he won't get all the drugs every time.  The other complication is that Rob either needs to have a port or a picc line so that they don't always have to find a vein.  There are pros and cons to both of these but over the long term we have decided to get a port.  We also had a long conversation about Rob's dream trip to BC that we have planned (thank you to all that are making that happen!).  The doctor wants to get chemo started as soon as possible so we have decided to have one round of chemo and then take the trip with some modifications. 


This seems like a long daunting road to be going on but Rob did it once and he can do it again.  Please pray with us that the drugs would do wonders and shrink the tumor completely, that the cancer does not spread anywhere else, that Rob's body will stay strong and he will not get any infections while on chemo.  As I think back to chemo last Oct/Nov I start remembering all the bad parts of being on chemo and having to watch Rob go through this.  Please also pray for strength for me and that I am able to be the best support to Rob. 


Rob is still having pain in his mouth and we still don't know if that is just from the surgery or if it in fact another tumor.  The doctors said they would watch it and see what happens.  We hope that whatever it is that the chemo gets rid of it and that next time they do a scan it is gone. 


He is also having a lot of pain in his neck and it is really affecting his quality of life.  Today he was given some pain killers that are a little stronger which is good but they also have side effects.  Next Friday we are meeting with the pain management team and hopefully they are able to figure out the best pain relief for Rob with the least side effects.  Please pray that he is able to sleep better tonight.  We both have had a few bad nights and it affects how you feel all day.  I am really hoping tonight we both have a good restful sleep. 


So our next step is to wait for the nurse to call and confirm dates for the picc line (we are going with a picc for this one treatment) and for chemo to start.  Plus we see the pain management team to get that under control. 


We continue to take it one day at a time because that is all we can handle.  Thank you for all the love and support we have received over the last week especially.  This is a hard journey to be on but we are surrounded by family and friends who love us and, although that doesn't take the pain away, it sure makes it easier.  Sometimes I wish I had the energy to thank you all personally but I can't so please accept our deepest thanks. 


Psalm 145:6  says "Your awe inspiring deeds will be on every tongue; I will proclaim your greatness."


Love Karen

God of the impossible.

Today was a day that I have had nightmares about and it came true this morning.  We met with Dr Nason and he told us the news we had feared since Rob's diagnosis.  They discussed Rob's case in conference this morning with the whole team and after seeing the MRI the consensus is that the node by Rob's collarbone is likely positive for cancer.  They do not have the needle biopsy results yet but basically those results will likely just confirm what they already know.  He said that if it does show up as positive that it would be considered incurable because even after the aggressive treatment they were not able to get rid of the cancer.  Surgery is not an option because it would not be able to fix the problem.  They would likely be able to treat it with radiation and possibly chemo to slow it down but would not be able to get rid of it. The spot in his mouth is still a concern and what to do with that is still a question.  I asked if the node on the collarbone could be something else and he said not likely. So now we wait for the biopsy report to come back and once they have confirmed it a treatment plan will be discussed. This will happen sometime in the next week. A friend asked me today if the node could come back negative.  According to the doctors probably not but we know that God can do anything.  We face the reality of what we were told today but we still have hope in a God who can heal and who promises His children eternity in heaven.  After Dr. Nason left the room we just sat there and cried.  We are broken and sad.  We don't know what the next few weeks hold but we were told to take it day by day.  We know we have today and we need to enjoy the day and our time together as much as we can.


Rob prayed this morning for God to do the impossible and he was hoping the impossible would be good news today but maybe the impossible will be that when the doctors say there is nothing else they can do that is when God steps in. 


Rob has also been referred to the pain management team at cancercare so that they can help him figure out the best pain relievers he should take.  He is in quite a bit of pain in his neck and mouth.  I know that it is getting worse because he has taken some T3's the last few days and he is not a fan of those. 


I don't even know how to ask you to pray but I do know that we continue to need an army of prayer warriors surrounding us.  We don't know if we have months or years but we pray that God would be glorified with every moment we enjoy together. 


Love Karen

Not the news we wanted to hear.

Yesterday we went to see Dr. Nason to get the results of the MRI.  The appointment was not until 3:30pm but I was feeling completely calm and relaxed about it and was convinced we were going to get good news.  Unfortunately we did not get the good news I was convinced we were going to hear.  Dr Nason came in and told us right away that the MRI was showing similar spots that the CT had shown and it was concerning.  The MRI shows more details then the CT and it was not ruling out that the suspicious spot could be a recurrent tumor and might not just be from the surgery a few weeks ago.  The other thing the MRI showed was the spot on Rob's collarbone that is very painful, swollen and hard was presenting like a lymph node that could have metastasized.  Given the location of this spot they were able to do a needle biopsy right away to test the cells.


So we left the appointment yesterday will more questions and concerns then we came with.  The team of doctors and specialists need to meet to put all the pieces together and discuss what the best treatment plan is and what all of this means.  On Thursday morning this week the whole team will meet to look at all of Rob's films as well they will have the needle biopsy results.  We have so many questions and so many scenarios are running through our heads.  I have imagined being told it is nothing serious or the worse possible case and everything between.  We have an appointment on Thursday morning to hear what the team has discussed. 


Last night Rob and I were sitting on the couch quietly and I asked Rob what was going through his mind.  He quickly said he was thinking that God is good.  In that moment even I questioned his response but very quickly changed my thinking.  Life doesn't always go as we think it should but I guarantee that there are always blessings to be counted and evidence of God.  We are scared and do not know what the future holds but we do know the God is good. 


Please pray
 -for a miracle and for complete healing for Rob.  I pray each day that we get to share a long life together here on earth. 
-that the needle biopsy comes back clear of cancer. 
-for relief of pain for Rob. 
-that the spot in his mouth is not a recurrent tumor. 
-for peace and strength.
-that God would be glorified through this tough journey


I will do my best to update you on the results on Thursday.
Love Karen

Worth the wait!

Waiting is something we are getting very good at!  After waiting all weekend to find out about this suspicious spot on the CT scan we had to wait until the 2:30pm appointment today and then we had to wait almost an hour to see the doctor.  It is crazy to say but during all that waiting I felt a calmness that I can only assume was from God.  At about 3:30pm Dr. Nason came in and didn't get right to the CT scan, this I thought was weird until we realized he didn't know there was a new report there.  He sat there and read it with a sort of puzzled look on his face.  He said the report was here and he would go over it with us but first he would examine Rob.  He thoroughly checked his mouth and neck and asked Rob a few questions.  While all of this was happening I mentioned that Rob had had his debulking surgery a couple of weeks ago and it all made sense to Dr. Nason.  The CT report said that there was a large area in the mouth that looked like it could be a tumor, however if Rob had a tumor that size again he would be in a lot of pain in his mouth.  Once Dr. Nason knew about the recent surgery he explained that likely this suspicious area was just the change in Rob's mouth since the debulking and not a tumor because he couldn't find anything in his mouth that was questionable.  The CT scan was done only a week after the surgery so there was still a lot of swelling and essentially like a hole in Rob's mouth where they took out the excess tissue.  He feels pretty confident about this but to be sure wants to follow Rob closely for the next little bit.  He is also sending his for an MRI to get a better look.  The MRI will happen sometime in the next week and then we will see Dr. Nason again next week.  He also examined Rob's collarbone area where he has pain and swelling and does not feel it is related to tumor or lymph nodes.  It didn't show up in the scan at all either so likely it is associated with muscle and swelling.  This also means that he can go back to physio and work on getting rid of the pain. 


Before the appointment today I had imagined so many scenarios of how the appointment would go and I am so thankful it was one of the better scenarios.  As we walked through the lobby I said to Rob "Thank you Jesus"!  We will feel even better after the MRI and some follow ups but when you fear the worst the good news felt so good.  Thank you for all the prayers and support.  We spend a lot of time praying this weekend and we know many of you did too and we are forever grateful.  We continue to walk in faith and trust that God can heal Rob completely. 


Please keep praying for Rob as his neck pain is still very bad.  It wakes him up at night and not sleeping is a hard thing to deal with.  Also pray the MRI is clear and shows that it is in fact just changes from surgery.   


We are praising Jesus tonight and are so thankful for answering our prayers today and giving us some good news.  God is good!
Love Karen

please pray

I am writing today to ask you to pray like you never have before.  Rob has been in a lot of pain this last week and the swelling by his collarbone has increased even in the last week.  Yesterday at physio the therapist did not want to do much to that area because it hurt so much.  We decided to call and see if they had looked at his CT scan yet.  At 5pm I got a call from the nurse to say that the doctor had looked at the scan and that there is something suspicious.  The radiologist has not looked at it yet and done a report so we don't know much yet.  The radiologist is able to decipher exactly what the suspicious part is. I was told that this suspicious spot could be cancer but it also could be scar tissue or other much more minor things.  With the pain Rob is feeling and that change in size we are worried but trying to keep positive until we know what we face.  We will be seeing Dr. Nason on Monday afternoon to get the results. 
So I am asking you to pray with us this weekend for a miracle.  Pray for complete healing so that Rob can live a full life here on earth.  Pray the suspicious spot is something minor that is easy to treat.  Pray for peace as we wait for news.  Pray that God would be evident to us and we would know he is in charged and knows best.
We are scared but trusting and praying for a miracle.
Thanks for caring for our family.
Love Karen

Surgery Update

On Tuesday this past week Rob had his surgery as planned!!  We arrived at the hospital about 11:30am and by 12:30 Rob was all ready and taken to the pre-op part that I don't get to go to.  It was such a relief having him walk into this surgery that was minor in comparison to the 2 other surgeries he had this past year.  I managed to keep myself busy and at about 3:30pm I got a call on the phone in the waiting room that he was already being taken up to the third floor.  I didn't even see the doctor this time which was weird for me but reassuring that it was a routine procedure.  One of Rob's fears going into surgery was that he would remember what had happened since they were just giving him sedation and not a general.  He was able to talk to the doctor before and said he did not want to remember a thing.  He does remember the feeling of them working in his mouth at one point but woke up fully only once they were done.  When I got upstairs to the post recovery he was already awake and talking which was awesome!  He felt a little sleepy but was feeling glad that it was over.  Once he was stable and felt ok they sent us home!  We got home about 6pm and Rob had a nap while I went and got his antibiotics and pain killers.  As far as we know the procedure went well although we won't really know how things look until the swelling goes down.  Right now Rob is having a lot of pain from the stiches rubbing on the inside of his lip.  At first we thought it was the loose end rubbing and I was going to trim it but now he figured it is the knot so I can't touch that.  Please pray the stiches fall out soon and the sores heal quickly. At this point we don't know if the surgery has helped the pain in his tongue because he is not able to move it much but we are praying that it does. We are very thankful to have this surgery behind us so thank you for all your prayers! 


Rob has been going to both physio and massage weekly and they seem to be helping but he is still in a lot of pain.  Some moments he feels much better than other moments but he needs to take breaks often because being in pain constantly is tiring.  The last 2 nights he has woken up in the middle of the night with sharp pains.  We continue to pray that he would have relief from the pain and that he has patience as it heals. 


This Tuesday Rob has another CT scan.  This is a routine one but each time we wonder what it will show.  We don't get results until the end of April and of course the waiting is hard.  We continue to feel God's peace and we pray that He has healed Rob completely and the scan shows no new growth. 


Today at church we sang the classic song Faithful One.  I was able to close my eyes and focus on the words and they really hit home. 
"You are my rock in times of trouble,
You lift me up when I fall down,
All through the storm, Your love is,
The anchor, My hope is in You alone."
God is where we place our hope and that is how we are able to face each day.  Our prayer is that through our journey people see how amazing God is and that they want to have a personal relationship with him.  Lots of bad things happen in the world but when you see the good things that can come out of a bad situation you know God is with you and because of this we have hope.


Love Karen

One year ago...

April 10th, 2014 was the day our lives were flipped upside down.  I can still remember that morning so clearly when we were told that Rob had cancer and then the fog that followed as we adjusted to our new situation.  Sometimes if feels like it was just yesterday and not a year ago and other days it feels like it was much longer then just a year ago.  As I think through the year I have a hard time comprehending how we got through it.  When you are in the midst of something you just deal with it because you have to, but imagining the past year we experienced is hard to fathom.  As hard as it has been and even as it continues to be tough, God's hand is so evident and we would not be where we are if we did not have Him. The name of the blog is from Psalm 16:9-10 which says "Therefore my heart is glad and my tongue rejoices; my body will rest secure, because you will not abandon me." We know that God will never abandon us so we can rest secure.  We may still have fears and moments of weakness and doubt but we know deep in our souls that God is there for us. We are also beyond grateful to our family, friends, prayer warriors, and those that have blessed us immensely.  Thank you for supporting us in all the ways you did and for continuing to walk with us. 




Since my last update Rob's neck pain has gotten much worse.  He is now on constant pain killers and is not able to sleep through the night.  Tiredness and pain is hard to deal with and we needed to get something done to help so I called Cancer care and got an appointment with Dr. Nason.  I had been asked when I called how much physio Rob had done since treatment and my answer was none.  This is not something that was missed it was more that in January he didn't need it and now he does.  A few days later we saw Dr. Nason and got what we needed.  He said the pain could be caused from the 2 extensive surgeries Rob had and/or the radiation.  Everyone is affected differently by this so they are not able to predict what will need done.  Dr. Nason agreed with us that the pain killers were good to use to help now but something needed to be done to help long term.  He checked Rob's neck and mouth and felt that he was doing well.  We left with a referral to physio as well as for a special massage called Lymphedema massage. 


The next day I started to call a few physio clinics and found one that had some experience with Rob's history and could see him right away.  He has since been twice and while he is there feels that it is helping but the problem is that feeling of relief does not last long.  The physiotherapist said that Rob has very tight muscles in his neck and shoulders and they needed to get them loosened up to get relief.  The exercises they told him to do at home are the same ones he has been doing for awhile now so we are praying that the work they do in the clinic will start to have longer results.  Up to this point most treatments and medications have been covered by Cancer Care but we learned very quickly this is not the case with physio (or massage therapy).  We had 2 options to choose from.  The first option was to go to the hospital for physio and it is covered however the wait is often long to even get in to see someone and booking regular appointments are very difficult because they are so busy.  The second option was to go to a private clinic and be seen almost immediately.  The issue with the private clinic is that there is no coverage.  We do have some benefits that will cover a few sessions but with only $300 coverage and $50 a visit it isn't going to last long.  Due to the pain and how it is affecting Rob's quality of life we decided the quickest root was the best option.  Please pray that both the physio and massage therapy are able to help quickly and that our coverage is not used up too quickly. 


Dr Nason also referred Rob to a Lymphedema Massage Therapist and he went to see her for the first time this morning.  When you have had lymph nodes removed and/or surgery in the area the lymph nodes do not do their job of draining fluid properly which can cause pain, swelling and stiffness.  She was able to do some gentle massage (as it is very painful for Rob) to encourage the fluid to drain and loosed things up.  She also gave us some instruction on how to do it ourselves at home.  Rob was feeling a little better as we left but she said it would make him quite tired so to make sure he had some rest.  It still feels like complete relief is awhile away but we are thankful for some help and praying that Rob will be able to take less pain killers in the near future. 




This coming Tuesday (April 14th) Rob is scheduled to have his debulking surgery.  I know that Rob is not looking forward to the surgery but he is looking forward to having it completed.  Because of the excess flap in his mouth his tongue that he has left gets pushed back and lately has been irritating the side of his tongue by rubbing on his back teeth.  Our hope is that by getting the debulking done it will give him more room and relieve that irritation.  Please pray that the surgery happens as scheduled, that it goes smoothly, and that Rob recovers quickly. 


The week after the surgery Rob will have another CT Scan to check and make sure there is no cancer growing.  I think each time he has a scan we will feel a little anxious and will feel a huge relief when we get good results.  Pray that the scan is all clear and that there is no evidence of cancer.  We pray every day for complete healing and leave the rest in God's hands. 


One year ago it felt like our world was falling apart and today feels much different.  The thing with cancer is that you can't just treat it and forget about it.  Cancer is such a terrible disease that drastic measures must be taken to get rid of it and those leave lasting side effects.  That being said we know that Rob has had excellent doctors who have done the best they can for him, we have an incredible support group of family and friends, and most importantly we have a God who loves us and can heal Rob completely.  Thank you for journeying with us and for continuing to walk along side us...we are forever grateful.


Love Karen