Radiation is done....now what?

Dennis finished the last of his 27 radiation treatments today!  We are so glad these are done.  They have really taken a toll on Dennis' stamina and on his ability to come up with words from time to time.  Although we are rejoicing that this stage is done, it has been an emotionally trying day as well.

This second round of radiation was something we have always kept as a last resort or at least for nearing the end of the options.  We knew going into it that it would be tough and that with radiation, good brain cells are also destroyed in the process.  What we didn't know is which functions might potentially be affected by this.  We still don't know that.  Radiation continues to work for awhile but at the same time swelling starts going down.  The bottom line is until some time has passed we won't know what long-term impact this last round of radiation has had.  This is also true in determining if the tumor is under control.  He will have an MRI in several months that will give us a better idea of what impact the radiation had on the tumor.

In addition, we had discussions with his doctor today that are hard.  There is no way in knowing when this tumor will start growing again.  Usually the doctor told us that they see regrowth in 6 months to 2 years but that they see people with shorter or longer time frames.  As hard as that is to hear, we also need to hear it in order to be prepared.  The doctor did tell us that when they feel they have done all they can, he will be open with us about that but that it is important to start thinking about options such as hospice so that when it is needed we will have plans in place.  He was very clear in saying that he is not saying that he thinks Dennis has less than 6 months which is what most people think of when they hear hospice.  He has no way of knowing at this point and wants us prepared.

We continue to seek God's direction in all of this.  We know and believe He is fully able to heal and restore Dennis completely. The only question is if it will be here or in eternity.  We will trust Him in what He is doing and that it is all in His plan for all of our lives.  We will live and enjoy whatever time we have left together. We know one day we will all be reunited in Heaven where there will be no more disease or death.

Please keep praying for us as we make this journey together.

• Pray for Dennis' strength to return and for his word finding challenges to go away.
• Pray for complete healing and restoration - God is able!
• Pray for us to have peace during the days ahead.
• Pray for wisdom for us and the doctors as we make decisions moving forward.
• Pray for the MRI in two months to show that the tumor is under control. 

Dennis and Brooklyn on Father's Day

June 11, 2012 - Two Years Ago...

Two years ago Dennis and I said good-bye as they wheeled him into the operating room to remove the tumor on his brain.  There were a lot of unknowns that day.  We wondered what they would find and if it would be cancer.  We wondered if surgery would cause life altering changes to his overall abilities.  We knew there was the possibility that he would lose the ability to speak.  I remember wondering if that final "I love you" he said as they wheeled him off to surgery would be the last time I heard it.  I headed to the waiting area where friends and family waited with me throughout the procedure.  Updates came and we waited some more.  Finally he was out of surgery and doing well.  In the hours ahead I heard his voice again.  In fact, around 2 in the morning he wanted gum.  So, after checking with his nurse and getting the OK to give him some, I searched the hospital for gum.  Mission accomplished - the canteen is open late at night.

In the days ahead, Dennis improved.  We waited on pathology reports, praying the news would be that the growth was benign or at least a treatable cancer but the news came that he had a glioblastoma multiform (GBM) a very aggressive cancer and so our journey of two years began.  We learned that survival rates for this cancer average about 14-16 months but here we are, two years later.  We have learned a whole new vocabulary about radiation, chemotherapy, trail programs...(so far he has been in four different trials) and the list goes on.  We have met some incredible people along the way.  Lori Hayes, his nurse, is amazing at arranging all the details and helping us understand all that is going on.  Dr. Robins has been leading the fight with this cancer and being Dennis' advocate in getting into trials that could help him.  Dr. Howard is Dennis' radiation oncologist who actually pioneered the radiation Dennis is doing right now.  In the past, it was impossible to do a second round of radiation to the brain.

In addition to the medical team, we have been blessed by so many people both near and far in our lives.  We have never felt alone in this journey as so many of you have upheld us in prayer and supported us in our needs.  We don't know what we would do without you.

We have seen God work in so many ways.  Just in the last two days we have had amazing things happen just when we needed them that only God could orchestrate.  I have to share these with you.

Brooklyn and I took a quick trip to Colorado for a wedding this weekend.  On Sunday we were heading back home and kept hitting flight delays.  After being on a plane, pushing out and then having to pull back in and get off of the plane for mechanical issues, the gate agent came over to me and asked us our last names.  She did not tell us why.  It was evident very soon however when I received a text message from our airline that my flight number changed and where the plane was leaving from.  The gate agent had booked us onto the few remaining seats on the last flight home.  Shortly after this, she announced the flight was cancelled and told everyone to head to customer service.  Amazing.  

Tonight Dennis was having rough night. He is so exhausted and was wondering if he could even finish the last of his radiation.  He has four sessions left.  We were discussing the options and if he should talk to the doctor about the risks of not completing it.  At this point the phone rang.  It was a friend from church that was calling.  He had Dennis on his heart and wanted to be an encouragement.  He shared Isaiah 43:1-4a with me:

But now, this is what the Lord says—

    he who created you, Jacob,

    he who formed you, Israel:

“Do not fear, for I have redeemed you;

    I have summoned you by name; you are mine.

2 

When you pass through the waters,

    I will be with you;

and when you pass through the rivers,

    they will not sweep over you.

When you walk through the fire,

    you will not be burned;

    the flames will not set you ablaze.

3 

For I am the Lord your God,

    the Holy One of Israel, your Savior;

I give Egypt for your ransom,

    Cush[a] and Seba in your stead.

4 

Since you are precious and honored in my sight,

    and because I love you.

It was just what we needed to hear.  Yes, God is with Dennis as he walks through this trial and it will not overwhelm because God loves us!  

So, we have reached the two year mark.  It has been a tough two years.  But it has also been an amazing two years.  I don't know of any other time we have seen God's hand so clearly in our lives.  He has allowed this time in our lives for a purpose even though it makes no sense to us.  When Dennis was in the emergency room the day they found his tumor, his comment to me was, "God can be glorified in this."  That is still our prayer - May God be glorified.  

Getting By

Dennis Update

16 radiation treatments down and 11 to go.  This has been a very hard round of radiation.  Dennis is exhausted most of the time and is struggling some with short-term memory.  We won't know until this is all done and some time has passed if any of this is permanent.  We would expect that at least the fatigue would get better.  Please keep praying that the radiation kills the cancer and leaves healthy brain tissue alone.

Dennis' Birthday

Today is Dennis' birthday.  He woke up tired and not feeling great.  We realized he had missed his medications last night so he took them this morning and is sleeping them off  as I write this.  Some family is coming by later today so we are hoping he feels better when he wakes up.

He is enjoying the birthday cards and notes of encouragement you are sending.  I'm sure they will brighten his week as they continue to arrive.

Around the House

I am so thankful for all of our friends who have helped us with projects around the house.  With Dennis not able to do this right now, I just get overwhelmed at time.  It often means I have little time to spend time with Dennis and Brooklyn but because of your help, it makes these times possible.  Thank you.

I'm also thankful that Dad often let me help him in projects as a kid and that Dennis and I have done a lot of projects together over the years.  Both of these men have made me competent with power tools and I can figure out a solution to some home repairs.  I've used these skills on two home repairs recently.

On Mother's Day we had a downpour and it was evident that we had clogged gutters.  I thought a simple trip up a ladder and I could reach in and clean them out but that was not to be.  Instead, the  clog was about several feet down in a curve in the pipe.  A few tools and disassembling of the pipes and we were back in business.  In the 11 years I have lived at this house, we have never had that happen!  I was soaked to the skin when I was done.  I'm laughing about it now but was not amused the day it happened.

Then last night I decided to check why the dryer was taking forever to dry a load of clothes.  When I looked behind the dryer there was lint all over.  On closer inspection, the vent tube was bent and had holes in it.  I don't even want to go into how much lint was stuck in the pipe.  So, a trip to the hardware store for a few pieces to splice two pipes together and a new pipe and we are back in business.  The dust and dirt was not the best for my allergies but it is done.

I told Dennis, "Aren't you glad you didn't marry a bimbo who could not do any of this stuff?"  I figure  I can at least make an attempt at these projects and if I get stuck one of you just might get an emergency phone call.  ;)

Prayer Request

Please remember to pray for Dennis during these last 11 treatments.  He is so tired of feeling nasty.  It has been a tough time for him.  He will finish them on June16th.  Pray also for Brooklyn and me as we try to encourage him and support him along this difficult road.

Radiation is Hard

Dennis will pass the half-way point with radiation today.  He has 13 treatments left.  It has been a difficult time with this round of treatments.

Radiation was hard last time but it has been awhile since that last round and you tend to forget the specifics until you are in the midst of them.  Last time he had radiation he was also on a trial drug and chemotherapy.  We had hoped with him only being on radiation that it would not be so hard this time but it is proving to be exhausting.  His treatments have been in the afternoon and he spends much of the morning resting or sleeping.  Often he gets home and does the same in the evening.  He had started a new medication prior to the treatments but he was really struggling with the side effects from it.  It is used to help prevent damage to healthy cells during the treatment but in this case, it was impacting his quality of life so much they decided to not use it.  They have done this before and it has been OK so we are comfortable with this decision. 

We are finding that Dennis has little ability to do much beyond going to his appointments and resting.  We are grateful for friends who have offered to help with lawn cutting and some outside projects that need to get done this summer.  I am continuing to work full-time and the addition of these chores was beginning to overwhelm me.  I can’t begin to express my gratitude for our friends who continue to step in and assist us.  You are a blessing in our lives. 

On Sunday Dennis wanted to go to the fireworks at Brat Fest in Madison so after church he took a long nap.  We got to Brat Fest, found a place to put down our blankets and relax and wait for fireworks to start.  Of course we had to have brats, so I made a run to pick up brats for all of us which we enjoyed while we waited for the fireworks.  We enjoyed the fireworks and the time together as a family.  We have learned to plan for activities to include times for rest and not to plan for things that last too long. 

Dennis and Brooklyn at Brat Fest

Please keep praying for us as we go through this.  Pray for Dennis as he completes the radiation that he will have the strength he needs and that it is killing the cancer cells.

It Is Well with My Soul

Today in church we sang this old hymn and I found myself thinking, "Can I honestly say that it is well with my soul? Do I really trust my Savior and more than that, say in my soul that all of life's trials and blessings are well with my soul?"   To be totally honest, I can't say that 100% of the time but I can say that  I am learning to rest in God's care and say, "It is well with my soul."

The last 10 days have been rough ones for Dennis. Radiation is tough and so is a medication he is on.  Most of the time he is terribly exhausted.  Just getting to the hospital, having the treatment and coming home will exhaust him.  He is also struggling again with walking and balance. As you can imagine, this is discouraging. He has 20 more treatments over the next four weeks so we have a long way to go yet.

Please keep him in your prayers. Your words of encouragement in emails and notes are appreciated too.

Please pray for the fatigue to subside and for the radiation to be effective and for it not to destroy healthy brain cells in the process.

It's Good to Look Back

I started reading back through this blog and our journey these past two years. Wow, what a great reminder of all the ways God has provided for us during these two years.

• People who have provided rides to more doctor appointments than we can count.
• Financial provisions that came just when we needed them.
• Sermons, notes, words of encouragement and specific Bible verses to meet our heart felt needs just when we needed them.
• Friend who have done yard work, cut down trees, taken Brooklyn to school, made meals.... amazing!
• Great medical care at a hospital and cancer clinic right where we live and in our insurance group.
• Dennis has done much better than most people with this type of cancer.  He does struggle with fatigue and some walking problems during the last six months,  but overall he is doing well.

God has been so good to us. In the Old Testament, God often instructed His people to construct memorials to remind them of how He had provided for them and to tell their children about His provision when they saw them. This blog is our memorial to all God is doing for us and a story to share with Brooklyn in the years ahead.

God has taught us so much over these past 23 months. We have been refined during this trial.  I have learned so much. Dennis and I were discussing yesterday how things that would have seemed stressful in the past just aren't any more. I think some of that is because we realize how unimportant the cares of this world are in light of eternity.  But mostly I think it is because we have seen God provide in so many ways and so many times that I am learning to let go and leave it all in His hands.  In one of my early blogs I wrote about how I am a fixer by nature. I always would try to fix whatever came into my life. Now I see that is not what God wants from me. He wants me to rest in His plan to take care of everything and to trust Him and wait for Him to take care of it all.

We don't know what the future holds in all of this but we know and have experienced God's working and provision in our lives and know He will be there in our future to meet our needs.  Knowing this brings us great peace.

What's Next?

We spent the afternoon discussing Dennis' next steps in battling this cancer with his neuro-oncologist and the radiation oncologist.  I'll spare you all of the details and sum up what we learned and where we are heading.

A portion of Dennis tumor is active.  You must treat this or it will continue to spread.  The best option is a type of radiation that has been pioneered by his radiation oncologist.  His first round of radiation was a high dose radiation delivered very quickly.  This radiation is a low dose delivered via a pulse over a longer period of time.  It has worked well for this type of cancer.  They don't talk about curing this cancer but providing quality time.  There are several factors that predict good outcome from this and Dennis has those all in his favor: at least 1 year from initial radiation (Dennis finished radiation in Sept. of 2012), overall functioning level and one other one that I can't recall at the moment.  It is impossible to predict how long the radiation will be effective for him.  There are a few people who have gone extended periods of time without a relapse and we will continue to pray and leave this is God's hands.

After Dennis finishes radiation, they will keep monitoring him with regular MRIs.  If it starts to grow again, there are a couple of things that his oncologist is considering for Dennis.  The options are somewhat limited but there are still a few options. Both of Dennis' doctors take the time to talk with us and answer questions.  They are very open and honest with us and we appreciate that very much.

Please keep praying.  We are doing what we can medically but we know an even greater physician who is able to intercede and totally remove this cancer.

In the weeks ahead, please pray for Dennis as he begins this treatment and a new medication.  Pray for tolerance of the medication as well as for strength for Dennis.  The radiation and the medication can make him tired.

Dennis will need daily rides to his appointments.  I have posted next week's rides to his help group and will post additional rides as soon as I have the appointments.  If you are not in his help group but would like to be, there is a link in the upper right corner that will take you to the sight.  Sign-up there and we will get an email.  You will receive an email back from us that approves your request.  You must respond to that email to be in the group.