What I have learned

No one can know the countless hours I have spent praying and begging God for my husband to get better. For years my prayers have been for this dreaded tumor to go away and his brain to heal back to the way it used to be. Night after night, this has been my plea to my Heavenly Father. I was so focused on what I thought I wanted that I didn't want to hear what he had planned for my family. I thought I wanted Jeff to get better because that is what would heal our family. That is what would make us happy again. I prayed so hard and had such great faith, but things were only getting worse. How could Heavenly Father not answer any of my prayers like that? And how did he expect me to keep moving forward when the wind was blowing so hard in the other direction? My life was broken, my heart was broken. It took a hard battle, but among all of my prayers I realized all I REALLY wanted was to be happy again. I wanted to know that I COULD be happy again. It took longer to realize this than I would like to admit but; He knows better than I do. It seems so simple now but it came to me as an epiphany. Although I would really love for Jeff to be healed, I needed to start praying for what was really important. I needed to stop fighting for what I thought would bring us happiness and start praying for our family to find joy in everyday struggles. Praying for the ability to be happy and find happiness. Because, its not about having a healthy husband or a better job, or a different circumstance, that determines your happiness. Its you that determines your happiness. I had to let go of what I thought I wanted and realize that other paths can give us the results and outcome we truly want in our lives. I had to realize that Heavenly Father knows what he is doing and he LOVES me. Even thought I have to go through crap. He still loves me. From now on, I am no longer going to pray for Jeff to be healed (although that would be awesome). What I really want is for our little family to find Joy. I am going to pray that everyday we can find a moment of complete bliss. We all have struggles and we all have to deal with moments of grief and pain that no one else can possibly understand. If we pray to find joy and happiness in our lives, it will come, no matter what our circumstances.  

The road ahead

I have been having a hard time with this post because of some mixed emotions. I know I should be feeling joy and excitement but I am so sorry to say I am not. I don’t know if it is because I don’t want to allow myself to finally feel a sense of relief or if its because I can see there is still a long road ahead. Jeff did have his appointment with the radiation oncologist and the news was good news. He said, "We hope we have put the cancer to sleep". The original tumor is still there and always will be. A lot of the swelling has gone down and things look like they did on pre-cancer scans. Jeff has a long road ahead and will need to work hard on making connections and memory. Things are still very cloudy for him and although he has been out working with his Dad, he still has a hard time understanding and following conversations. Everything I have seen and all of my research tells me he can get better and through neuroplasticity, his brain can make new connections. I have great hope for him in the future but since this has been the 3rd round of bad news in 4 years, I am sure you can see my reservations. Now it is up to us to decide how things are going to turn out. 

The everyday

We have been back to everyday life and I have forgotten to keep everyone updated. Jeff has slowly been improving. I keep telling everyone he isn't getter better as fast as I would like but we have seen changes. He no longer has to tilt his head to focus and his walking/hip issues have improved. Since radiation, Jeff's hair still is not growing but we were told it could take 6 months or more in order for that to happen. We have been to Edmonton for a follow up MRI and bloodwork, but won't know the results until the 9th of December. We don't think about what could be and mostly just assume the radiation did its job and the cancer is gone. We are really focusing on Jeff's rehabilitation. Getting his stamina up to where he will be able to work a full day. Jeff has been doing a few jobs for his dad around the farm the past few days but finds it hard to work for more than a few hours. We take things day by day and everyday just hope and pray his brain will heal and things will get better. It will still be a long road for Jeff but we hope the worst is over. 

Home stretch

Only 3 more days of radiation and we are getting excited. Jeff's head and ears have been really taking a beating from the radiation. His head has been super itchy and he is sporting burns and open wounds behind his ears. Creams have been helping with the itching a bit but its just something Jeff will have to deal with until the radiation is done and his skin will finally get a chance to heal itself. It will be all about the healing for the next couple of months. On tuesday, we were told a scan of Jeffs brain, to determine the results of radiation, wont be done until the middle or end of october (unlike this week like I originally thought). The radiation causes a large amount of swelling and if they scanned his brain now, it would be hard to determine what is swelling and what is tumour. I was completely mistaken when I saw an appointment scheduled for him on Tuesday, I assumed it was a scan (silly me). After the  scan in October, it will take a few weeks for the radiologist to write his report so we will be meeting again with the doctor sometime in November. The doctor did say things are looking good and Jeff is tolerating treatment quite well. His wounds and burns are minimal compared to what some people experience. He is just about done and we can not wait for his brain to start healing!

Half way

Jeff and I were getting hopefully that he wouldn't lose any of his hair, since he was already 2 weeks in and didn't show any signs of hair loss. On Tuesday morning however, Jeff woke up to a pillow full of hair. I ran my hand through his hair and I had a hand full. We decided it was best to shave it. Most of the day I walked around a little sick that Jeff had to deal with having no hair and he kept saying how little it bothered him. I guess it's coming from two different perspectives.

 

This is Jeff after we shaved him. Since shaving him, I noticed his scalp was red and flaky but it was nothing a little coconut oil didn't fix. They say it could take 3-6 months for his hair to come back and in some people it never comes back. 

Jeff has officially completed while brain radiation and today was the first day of the boost where they target specific areas with a more concentrated amount of radiation. He has passed the half way mark and only has 8 more days of radiation. 

8 days in

Today was day 8 of treatment and it is beginning to hit Jeff. Today we went out to eat after his appointment and we were just about finished eating when I could see his eyes start to get heavy. He was exhausted and almost seemed to hit a wall. The doctors told us to expect to start seeing symptoms around week 2 and I think we are going to start seeing the radiation take its toll. Last week went well with no major issues. He did a lot of sleeping, but that's nothing new. He was able to meet with the occupational therapist who is going to do a cognitive assessment this week and also refer him to a physical therapist for his leg/hip/limp and a nutritionist to help with what to eat and not to eat during treatment and to keep his energy up. It will be interesting to see the results of his cognitive assessment. I would describe his mental ability as being cloudy (I think I have mentioned it before). You know when you wake up from a deep sleep and someone talks to you but you aren't fully aware of what's going on and later you may or may not remember what the conversation was about. That's kind of how Jeff seems to be a lot of the time. I think it does have a lot to do with being so exhausted all the time and his brain having to work so hard to make the connections that used to be so easy for him. Nonetheless, the OT may have some strategies for Jeff to help make some difficult cognitive tasks easier. We also hope when the tumor is gone, the cloud will be lifted as well. 

In terms of treatment, the original treatment end date given to us, when we were told the treatment start date, was the 27th of September. Last week, when we got his treatment schedule, he was only scheduled until the 16th. The doctors decided they could accomplish what they needed to in less time. Yay! Jeff has 13 days of entire brain radiation and then 9 days of what they call a boost where they will specifically target his tumor with a more potent level of radiation. A scan on the 10th will show the effect the radiation is having on this cancer and give us a good idea of whether or not it is doing what we all hope it will do. 

day 2

Jeff is already 2 days down into his 6 weeks radiation journey. He started on thursday by going to a class about what to expect when receiving radiation treatment. It was very informative and a little overwhelming to hear how many people are being treated at the cross everyday. After Jeff's class, he got to experience the whole radiation thing first hand. The actual treatment only takes a couple of minutes and the radiation techs have things running rather smoothly. On day 2, I was able to see exactly what they do and even snap a few shots while I was in there. The mask over his face is purely for immobilization and positioning purposes. It is fairly tight and he comes out with a honeycomb face after, for a few minutes at least. The green laser lights are there to position him and they line up with the marks on the mask. After he is positioned they take an x-ray to double check his positioning. He is placed in the EXACT position he was in during his planning scan. This is to ensure the highest amounts of radiation are deposited into the tumour and only the tumour. Once things are all lined up, they start up the machine. The tech explained that the radiation is kind of like leaving an x-ray on for too long and Jeff feels nothing during the treatment. The actual radiation is on for 1- maybe 2 minutes each day. Since it takes about 2 weeks for it to build in your system, the doctors say symptoms usually start around then. A lot of people have been asking us about symptoms and its actually something we have been trying not to think about. We know what could happen but its not super helpful to talk about all the horrible possibilities. Jeff has a great team looking out for him and if problems arise, they know how to deal with them. It is expected that if symptoms arise, they will continue to worsen until about 7-10 days after his final treatment at which point they will peak and we should start to see some improvement. The hope for these treatments is that at the end of 6 weeks, his scans will show complete removal of the cancerous parts of the tumour.

Start date

Jeff has completed most of his tests and was able to see the endocrinologist yesterday. Because the radiation will be so close to the pituitary gland, they are worried about what that might do to Jeff's hormone levels and such. He will complete blood work on Monday and get a base line of where his hormone levels stand currently and if any symptoms arise during treatment, the doctors will be able to better tell what is normal and abnormal for Jeff. With this last appointment completed, Jeff is on the radiation schedule! His first day of radiation is the 15th and will continue every weekday until the 27th of September. That's less than a week before Jeff's radiation journey begins.

Thank you

I have been thinking about this for a long time and I'm not quite sure how to say it. I feel like a simple thank you to everyone who has helped us along our journey wouldn't be enough. I feel like writing a few words on a blog can't even come close to showing how much gratitude and love we feel for each and every one of our friends and family at this time. So many pleas to our Heavenly Father have been answered time and time again and it is all because of you. You acted as instruments in the lords hands and showed us the love and support we needed and continue to do so. Every time I feel like this load is getting a little too hard to carry, I get a phone call from a friend or a random envelope in the door! It helps me to carry on and to know that Heavenly Father is watching out for me and knows my needs. Thank you to everyone. If you don't think you have done much, trust me it helps to know that people are out there praying for Jeff and our little family. So many of you have helped us over and above what I ever would have expected and I can't even describe the deep gratitude and love we feel. Thank you!

Radiation

We had a really great experience at the cancer institute. It is somewhat surreal seeing how many people are effected by cancer. We were able to talk with a resident radiation doctor who explained to us what germinoma was and how it is basically the same type of cells as a teratoma (the original tumour) but the difference is how abnormal they look under a microscope. The great news is the doctors were very positive and told us this cancer is very treatable and very curable. They hope in future scans to see only scar tissue or complete removal of the cancerous part of the tumour. The treatment all of the doctors on the tumour board decided was the best course of action was 6 weeks of radiation. This means everyday Monday to Friday Jeff will go to the cancer institute and weekends we will be able to come home. Treatment should take about an hour a day and the rest of the day I'm sure will be spent sleeping and resting. The hope is radiation will work to remove the cancer and chemotherapy will only be used as a last resort. A few tests still need to be done before his treatments start. Jeff has a few appointments next week to measure his head for a helmet type device that will hold his head in the proper place during treatment, another CT scan, and also visual field tests for a base line. A few more tests still need to be scheduled so treatment should start in about 2 weeks. 

Appointments

We had a great 2 weeks with Jeff's family at the beach and playing with all of the cousins! They are gone now and it's time to snap back into reality. We had Jeff's files transferred from Calgary to Edmonton but the doctors didn't want to transfer them until they had made recommendations and completed their end of the deal. So they met in brain tumour rounds on the 3rd of July and his files were transferred on the 5th. Since it was the weekend, no one was available to look at his case until Monday. A nurse reviewed his files and sent them into brain tumour rounds again in Edmonton. The doctors were able to meet on the 11th and from there his files went to another specialist for review. Then another weekend came along. Needless to say, I'm sure every specialist in the province is now aware of Jeff's case.   Today he got a phone call from Edmonton and it looks like things are starting to move along. Jeff has an appointment on Thursday! Jeff has been having a difficult time these last few weeks. He is becoming more and more unstable on his feet and the fact that he can't move his eyes down doesn't help when he is going down stairs or on uneven terrain. His vision is worsening and has to close one eye to read now. He sleeps most of the day and when he is awake, he has a hard time trying to get enough energy to do most things. We have been reading a lot about diet and different things that might help with cancer. So now he is on a sugar free (for the most part) diet and we have been really trying to incorporate more vegetables and antioxidants into his diet. We have been hearing things about essential oils and we (I more than him) are excited to start trying those. I figure if it doesn't hurt, why not? 

We are very hopeful that treatments will help Jeff and, along with a healthy lifestyle, he will start to feel better. 

Everest

Since Jeff first found out he had a brain tumor, I have had a few people tell me they could never go through something like that and it would just be too much for them. I have thought about it a lot and decided to clear the air. 

You are stronger than you think! You can do anything! I have a board in my house that says in big bold letters, WE CAN DO HARD THINGS. I made it right after Jeff's second surgery when I started to realize how true these words are and how much stronger I am than I thought I was. Growing up, I always heard this saying, God doesn't give you anything you can't handle. Thinking more about our abilities as children of God,  I have come to the conclusion that everyone can handle anything! Of course God will not give us anything we can't handle but there is nothing in this world no one can handle.  Just recently I heard someone say, God helps you handle what you have been given, and this is absolutely true. I don't care how weak you think you are. When it really comes down to it, when you have hit rock bottom, you see that there are deep wells of strength you never knew existed inside of you. You may not think you can do hard things, but people who have done great and amazing things in this world are human just like you and me. Before I married Jeff, I used to think I was not a strong person. I had never really been given many challenges in my life, I never lost a loved one or had to deal with physical illness. So I just assumed I wouldn't be strong enough to handle something like that, that is why God never gave me those challenges. At church they always talked about how hardships make you stronger and for the first few years of adulthood I went looking for challenges. I traveled to Africa to climb the highest freestanding mountain in the world. Then again I went to Argentina to climb another of the 7 summits. These challenges I gave myself because I had to see how far I could really be pushed, how strong I could become if I made it to the bottom of my soul and had to search further. I even dreamed of Everest thinking how hard a mountain of that magnitude would be for me to climb. Now, having a husband with brain cancer and 2 small children to take care of IS my Everest. I never knew if i would ever make it to Everest, but this I know now, just like I came back from Africa and Argentina, I will make it back from this. I will be stronger and more determined than I ever was before. Even though Everest may be a hard climb, I have my Heavenly Father by my side and he WILL bring me through it. He can and will bring you through it too. You can do hard things. 

Still waiting

We have played the waiting game with doctors before but for the most part I have found that when things are serious they get done quickly. It's almost scary when the doctors want to do things quickly. When Jeff was in the hospital one of his nurses once said "the only time you need to worry is if you see nurses running." This is also true with doctors. If you see doctors rushing to get things done, it's time to worry. I'm not sure that offers much comfort for Jeff while he sits here waiting for some answers. I got a phone call the other day and because the results to all of Jeff's tests would not be in, the doctors are now going to review Jeff's case on the 3rd of July instead of the 26th of June like we hoped. Jeff did have an appointment with his surgeon who basically could answer none of our questions. He informed us that the tumour, where it sits now, is no longer operable and another surgery is not in the future for Jeff. His official answer to most of our other questions was, "that is something you will have to talk with the oncologist about." This left Jeff frustrated since we have been having a hard time getting an appointment with them. The resident working with the surgeon did however take a look at the MRI images of Jeff's back. She only did a brief overview but mentioned that she could not see any significant lesions. Meaning it doesn't look like the cancer has spread to his back or spine. We still have to wait for the official report and the oncologist but hopefully she was correct in her findings and the good news continues.

 Jeff has decided that if the doctors give him treatment options, he would like to be treated in Edmonton. This may mean more waiting for his files to be transferred and the doctors in Edmonton to get their ducks in a row. Although I do think that might be the easiest option for us. 

Jeff continues to be tired (extremely tired) and is dealing with a broken toe along with a weak right leg. He is super anxious to get something started and is ready to start fighting. 

Tests

By Tuesday morning I was getting a little worried because Jeff only had an MRI booked for wednesday but no other tests booked and we hadn't received any phone calls scheduling them. Last week the nurse from the Tom Baker sent all the requisitions and we expected the testing to start right away on Monday. I phoned the Tom Baker and things got rolling. By 11:45 we were in to see Jeff's family doctor and then over to the hospital for blood work, barium for the CT, and then an ultrasound. Next was the CT which he had around 3 and then we were down the hall to emergency after that. 

Earlier in the day Jeff mentioned his right leg was a little limp. I panicked and e-mailed Jeff's surgeon asking if it was something of concern. The surgeons immediate response of "come to foothills ER to be assessed" sent me into an even bigger panic and I sent Jeff to the ER. The doctor in the ER watched him walk and did some neurological testing which ruled out anything major such as a bleed or stroke. He decided his limp leg was due to the surgery and didn't give much more information than that. When Jeff's surgeon told us the risks before his last surgery, one of the big ones was that he may be paralyzed on his right side.  So a limp right leg is conducive with the lesions from the surgery. I am still a little concerned about his leg and keep watching him to see if it is getting any worse. So far it seems to be ok. 

On Wednesday morning we were back in emergency for a scheduled lumbar puncture and later that afternoon he had his MRI. We were really happy to hear the mobile MRI was in the area and we didn't have to travel to Edmonton for that. Now testing is done and we wait. The doctors at the Tom Baker are meeting again on the 26th to discuss Jeff's case. We hope to hear from the doctors soon after. 

Phone calls

We were anxiousley waiting all weekend in for a phone call with news of what was going to happen next for Jeff. By tuesday, jeff couldnt wait any longer. He had a contact number for the brain tumor clinical nurse and so he gave her a call and left a message. On Wednesday morning she called him back and explained that the doctors planned to discuss Jeff's case at rounds that afternoon and decide on an appointment date. It wasn't a lot of information and Jeff had actually taken the waiting very well until now but after this phone call he kind of broke down. He needed more information and he needed it right away. He has been scared to think about what this whole cancer situation might mean for him and when he was told he had to wait even longer it was too much. I called the nurse back and told her we needed a doctor to phone us and explain to us what germinoma is, what treatment options could be, and what all this means for his future. She said she would have someone call us after rounds to explain a little more about his case and what they are doing or thinking in terms of treatment. Later that day we did get a phone call. It was the neuro oncology nurse and she explained everything to us. Germinoma is a cancer that doesn't have one set treatment plan like some of the other brain cancers such as a glioblastoma which is treated the same way every time. Every treatment plan is different with germinoma and that is why they need to look at Jeff's whole situation ( the bigger picture) to decide on a treatment plan from him. Usually germinoma is highly sensitive to radiation and chemotherapy but depending on the type and where it is, they have a lot of different ways they could deal with it. Right now they need to do further testing and most of that can be done in Cold Lake or Edmonton. It should take a few weeks for the testing to be done and results from those tests to get back to Calgary. After all the information is in, the doctors will discuss his case again in rounds and they will decide what needs to be done next. 

We wanted to let everyone know how extremely overwhelmed we are to see the love and support we have. I can't put into words how much gratitude I have for all the help and love we have felt. We know prayers are answered and we can feel your prayers working in our lives!

Round 3

Jeff has been having routine MRIs and in October 2012 the drs noticed his tumor wasn't getting bigger but had increased in density. With these result they decided to keep a closer eye on it and check him again in a few months. His next MRI was in May 2013 just a few weeks after our precious baby boy #2 was born. I had been noticing things weren't as sharp for Jeff (its really hard to explain what its like for him. He would tell me things a few times and forget things we had a conversation about earlier but remember everything the minute i would mention something. I kind of think of it as him having a fog in his brain and things just aren't so clear.) and he had been feeling extra tired, barely able to make it through the day with out a good night sleep and a few hour nap in the day. Also his vision was becoming worse and I noticed he was starting to turn his head when he would look at things. With these symptoms and the new results of the MRI, we were called in to see Jeff's neuro-ophthalmologist and neuro surgeon. The news wasn't good. Jeff's tumor had grown drastically in the 6 months between MRIs and his doctors were worried. Jeff's surgeon wanted to do another surgery! Our hearts sank as we sat in that office for a 3rd time with horrible news. This surgery was just a biopsy and less intrusive than the first two. If everything went well, the dr told us Jeff could be in and out of the hospital that same day. Surgery day was last Tuesday and I am happy to report everything did go well. A lot of prayers were said and Jeff was in and out of the hospital that same day. He was actually kept awake for this surgery and talked with the doctors the whole time. There would be times when they would ask him to move his hand and had him talking to make sure all was well. When he was out of surgery, I couldn't even believe they had just messed around in his brain! He got 2 stitches on the side of his head and 4 little cuts from where we (yes WE, the dr let me help!) screwed on the box to keep his head in place. This was nothing compared to his last 2 surgeries. He has been extra extra sleepy and a little cloudy but I am glad that part is over. We had planned on results to take a few weeks and had a follow up appointment with jeffs surgeon booked for the 26th of June. That is why the phone call Jeff got was unexpected and scary. On Thursday morning Jeff got a call from the Tom Baker Cancer Centre. The biopsy had shown his tumor is now cancerous. A type of brain cancer called germinoma. For me, it still hasn't sunk in and Jeff is handling as best he can. He is terrified and unsure but for the most part he stays strong for me and the boys. He tries so hard to help out and make my life easier. We are still unsure where we go from here. Jeff had an appointment at the Tom baker for Tuesday morning but soon after got a phone call telling him the drs want more time to look at his situation and make a plan. They said maybe Thursday but we have to wait for a phone call next week to see when we can meet with them. We have so many questions and are anxiously waiting.