What's Up???

Dennis' New Treatment

Dennis started the new NovaCure treatment on December 2.  We are still trying to getting used to the logistics of carrying around batteries and planning for how long we can be gone before he runs out of power.  Dennis is finding that even when he is home it is easier to run off of the batteries instead of plugging into the wall unless he knows he will be in one place for an extended period of time, like at night when he sleeps.  At least when he is on batteries, he does not need to shut everything off and unplug before he can move.  I’m learning how to change the electrodes and I’m feeling pretty comfortable with it.  I am actually teaching a friend how to do it also in case I am not available when he needs a change or as Dennis says, “In case you are not in mood where I want you to do it.”  This treatment is not easy in that it is cumbersome and so visible.  On the positive side, there are no side effects with it.    He will have an MRI at the end of January but the doctor told us that the first MRI on this treatment often shows pseudo progression so it is not a good indicator of if the treatment is being affective.  We continue to pray for complete healing and restoration. 
 

Beating the Odds

It has been 18 months since Dennis was first diagnosed.  If you have done any reading on GBM, you know that he has already beaten the odds.  We are grateful for this and trust he will blow the statistics out of the water!  In those 18 months we have struggled, grieved, rejoiced, celebrated…LIVED!  We remind ourselves often that if we dwell too much on what the future may hold, we miss out on what the present is giving us.

A Look Back

As I look back over these 18 months, there are so many things for which we can rejoice and be thankful:

• Dennis has never had a seizure with this.
• Dennis has struggled with fatigue (which at some points has been pretty overwhelming), word finding and has recently had some balance issues but overall he has done well following major brain surgery.
• Our insurance continues to cover the costs of his very expensive medical bills.
• We are blessed with a large group of friends who have used their individual gifts and talents to help us over and over again.
• Our financial needs have been met, sometimes in unforeseen ways, during all of this.
• Brooklyn has flourished in our family despite all of the stress of dealing with a very serious illness.

And those are just the highlights.  I won’t bore you with all of the details but most of them are in earlier posts in this blog if you want to go back for a review. 

 

On the Home Front

 

On a bit of a sad note, we said good-bye to our golden retriever, Abby, on Monday.  She would have been 15 in February.  Abby came into my life before I met Dennis and has been a wonderful part of our family for all of these years.  Her sweet temperament will be missed in our house. 

Have a Great Christmas

I trust you all will have a wonderful holiday season.  We will celebrate our Saviors birth with both sides of our family.  We hope you also have the opportunity to spend time with your families in the weeks ahead. 

Attempting Normal

I’m beginning to believe that “normal” is highly overrated.  For the most part, as long as life is “normal” we don’t even think about it but once “normal” has been disrupted, it invades our core being.  We ask questions like, “Will life ever be “normal” again?” 

Frankly, life is never “normal.”  There may be patterns to life that makes us feel like all is “normal” but in essence, each day or season of life is diverse and by its diversity, makes our lives a beautiful tapestry rather than a monotone existence.

Some times are full of the vibrant colors of life – new children, major goals that are accomplished – and others are shades of gray or even black – illness, sorrow.  We are living in one of those gray areas of life.  Yes, there are smatterings of color along the way that brighten this time and help carry us along. 

As we approach Thanksgiving, it is important to look back at all those bright spots along the way that keep us going even when life is far from “normal.”

• Friends who continue to pray for us.
• Emails, cards and calls that come our way, often just at a time when we need someone to help carry us through the day.
• Old friends that have celebrated with us the exciting times in our lives – marriage, Brooklyn’s arrival – and new friends who have only known us during this difficult time of Dennis’ illness but have opened their hearts to us.
• Meals, rides, project help, packages, visits…So many ways people have encouraged us and so often they have come at times when we were at the end of our strength but had not even shared our needs but God placed us on their hearts.
• Help with Brooklyn after school, during Dennis’ appointments or just to give her a break.
• Medical staff who could see just one more person with cancer but instead, know Dennis as a person and show compassion.

Yes, we attempt “normal.”  In a few days, we will host our “normal” Thanksgiving gathering.  We will be surrounded by friends and family, enjoy a typical Thanksgiving meal, watch some football and enjoy some good conversations but under all of it is a current of "not-quite-normal.”  But in this "not-quite-normal” time, we have been blessed in ways we never would have experienced otherwise. 

So as we approach this holiday, we are thankful for so many blessings God has given us. As we move into yet another season of this cancer journey, although we enter it with much foreboding and dread, we know God is walking through this with us and will have many vibrant colors to brighten this path as well.

May you all have a wonderful Thanksgiving.

Prayer requests:

• Dennis’ new treatment starts on Monday, Dec. 2.  Please pray for him during this time. 
• We are in the process of insurance approvals for this new treatment.  Please pray for their approval.

Treatment - What's Next

We met with the doctor today.  The original tumor sight had some bleeding in the tumor.  Because of the bleeding, Dennis cannot stay on Avastin.  The risk of a serious hemorrhage is too high.  Two options were available to us at this point.  They could use radiation again.  Until recently this would not have even been an option.  Radiation was used once on the brain and that was it.  Methods have been developed to do radiation a second time if over a year has lapsed since the previous radiation.  However, with radiation comes a high risk of cell death of healthy cells in the brain and the loss of function from it.

The second option is the Novacure or NovaTTF, it goes by two names, that disrupts the cell division in the cancer cells but does not affect healthy brain tissue and has minimal side effects.  The only real side effect is tender skin from the tape.  This is the option we have chosen.  There is planning and insurance approval that has to take place over the next few weeks.  Dennis will start the new treatments either the Monday before Thanksgiving or the Monday after Thanksgiving.  There are some drawbacks to this treatment.  Dennis will need to have his head shaved so that the device he will be wearing comes in contact with his skin.  None of us are looking forward to that.  He also needs to be plugged into the device at least 18 hours a day.  When he is home, he can plug into the house current.  He will have batteries to use when he is not home.  The pack weighs around 6 lbs that he will be carrying around all the time.  Although we think this is a good option at this point, it is very hard to process through all of this.  We hope with time that it will become somewhat routine.

Dennis also is scheduled for an MRI of his spinal column.  Since the brain and spinal column work together, the doctor wants to make sure that no new tumors have developed outside of his brain.  He is doing this as a precaution.  If they would find any tumors in his spine, they will use radiation to destroy them.

The second tumor in his brain is gone.  This one may redevelop now that Dennis is off of medication.  If it does, the doctor will direct the Novacure to that area as well.

We are totally spent emotionally.  This has been a very hard couple of days.  We don't like that this new treatment will be so visibly obvious to us all the time.  With all the other treatments, it was easier to "forget" all that was going on.  

We continue to trust and rest in the care of our loving heavenly Father.  We know he loves each of us and has a plan and purpose for this difficult time in our lives.

Please continue to pray for us.

• Peace as we await the start of this next treatment.
• That the spinal MRI will be clear.
• Dennis - to gain strength now that he is off of the medication.  (It will take several weeks to clear out of his system.)
• Ellen - I am emotionally drained.
• Brooklyn - as she processes all that is happening and for us as we guide her through it.

We love you and appreciate all you do for us.  Dennis will be able to get out and about with this new treatment so don't hesitate to call and see if he wants to get out.  It helps him not to just be at home all the time.  Thanks for your prayers and care you have so generously given to us.  

MRI Report

Dennis’ MRI report was mixed news.  The tumors have not changed.  That is the good news.  The are basically where they had been when they did the last MRI.  However, there appears to be some bleeding so he cannot continue with the current medication.  This might explain why he has not been feeling great recently. 
So, where do we go from here?  We will know more when we see the doctor tomorrow but he is leaning toward a treatment that we have been asking about since early on in this journey.  There is a device that has been developed that delivers electric impulses to the brain that disrupt cell division.  (Normal brain cells do not divide whereas the cancer cells do divide.) It has shown some good results and produces almost no side effects.  Dennis will need to wear this almost all the time except when he is in the shower.  You can learn more about it at:  http://www.novottftherapy.com/patients-home.php   Dennis said he will have to get some new hats to wear with it. 

So, keep praying for us as we enter a new type of treatment and that this proves to be the one that will kill off these nasty cells. 

UPDATE:  The doctor took another look at the MRI and the one smaller spot appears to be better or gone.  This is encouraging news. 

Today is THE DAY

 

Today is the day we both dread and look forward to.  It is the day our lives revolve around.  Eight weeks and then THE DAY arrives.  Yes, today is MRI day. 

Two weeks ago if you would have asked Dennis, he would have told you, “I just want to have the MRI to find out what is going on.”  He felt strongly at that point that he was ready to know.  For the last several days it has been more of a foreboding.  Do we really want to know?  What if the medication is not working?  Are the symptoms Dennis is having side-effects of the medication or are they an indication that this beast is growing and interfering with his movements and strength?  If the medication is not working, then what?  Frankly, our options to combat this are growing short.  If you look at statistics on survival after diagnosis, Dennis right now is at the point of the average months past diagnosis.

So, today we wait.  MRI is at 11:20am.  There is a possibility that the doctor will call this afternoon with results.  If not, he usually calls first thing the following day.  We will meet with him on Wednesday.  If the MRI is stable, it will be a routine check and Dennis will then receive his next dose of the same medications.  If the MRI has changed, we will discuss other options that still are available.

Please keep all of us in your prayers for peace as we wait and as we hear the news and for clear direction on treatments moving forward if we need to make changes.

We will post here as soon as we have any news. 

MRI Around the Corner

We are on the homestretch for the next MRI.  In two weeks, Nov. 11, Dennis will have an MRI and then we will most likely hear from the doctor the next day with results.  We will actually see the doctor on the 13^th.  The weeks leading up to an MRI are full of mixed feelings.  We want to know what is going on but also dread finding out.  We have had the experience of relief when the news is positive and the blow of word that the tumor was back and growing.  As always we appreciate your prayers during this time. 

I know most of you read this blog to find out how Dennis is doing.  If you have not seen Dennis for awhile, you would notice that he moves a bit slower than he used to.  This is largely due to his feeling off balance most of the time so he is very careful in how he moves.  We are unsure of what is causing this balance issue.  It could be medication side effects.  There is also the possibility that the tumor is causing the problem.  We might have a better idea on which one of these scenarios is the cause after the next MRI.  The other issue that challenges him a lot since starting this medication is fatigue.  He is really tired most of the time.  This is expected as his body is being attacked, not only by the cancer but also by the medications to fight the cancer.  He tries to get a lot of rest so he can do the things that he wants to.  He has learned that getting overtired on one day will snowball into several days of being extremely fatigued. 

As far as how he is emotionally handling all of this, it varies.  Sometimes it is very discouraging.  Yesterday we were discussing how we both have been going through the “stages of grief” (denial, anger, bargaining, depression, and acceptance) in regards to his cancer.  I think we have to some degree or another been in every stage and revisited them several times.  There are times we just want this all to stop.  We want Dennis to just feel good and to be able to look forward and go on.  There are times we look ahead and face the reality that unless there is a miracle in his healing, that our time together is growing short.  Overall, we try to focus on today and enjoy it.  To look at the blessings in our life and not on the losses and be thankful each precious day we have together.  In light of this you might be thinking we have given up hope – I can honestly say that is not the case.  Our hope lies in the hands of our Savior who loves us and has this all under control.  He will continue to walk this journey with us and meet our needs along the way.  We know the outcome we would like, but we trust our Heavenly Father to do what is best for us and to provide for all of our needs along the way.

Thank you all for your love, prayers and support.  We need them. 

Please pray for:

• MRI on Nov. 11 that it will show no new growth.

• Wisdom in how to handle the side effects of the medication.
• Dennis as he continues to deal with his limitations and the changes that he is living with.

• Brooklyn as we help her to understand what is happening to Dennis and how this fits into God’s love and plan for her life.

• Ellen as she handles many of the details of Dennis’ care on top of the normal ongoing responsibilities at work, as a mom and a wife.  (Frankly, there are times I feel like I am at the breaking point on what I can handle.)

Some days...

It’s hard.  Gut wrenchingly hard! 

There are days and sometimes weeks that I sludge through the mud pit of life and wonder exactly how much longer it can go on like this.  How can I make it one more day with more things to do than time, less patience than I want to have, and tears that are kept barely below the surface…and not always kept there.

Managing life around medication side effects
Getting to and from work
Surviving and being productive at work
Listening to a second grader read (reminds me of why I only taught second grade one year!)
Playing with Brooklyn when I am exhausted
Arranging rides for Dennis
Taking care of normal things around the house
Making meals – ok, I’ve never been great at this
Swimming lessons
Piano practice
Old dog – wondering when I watch her get around if we will have to make “the decision” soon

You get the idea – very ordinary things but when coupled with watching the person you love more than anything else in this world deal with a horrible cancer, it just floods over me sometimes.  I’m living there right now and it is just plain hard.  I want it over.  I want to wake up tomorrow to life pre-cancer.  To giggles from Dennis and Brooklyn playing together and my most annoying problem is figuring out a way to teach the young dog how to be quiet. 

But

That is not God’s plan for me right now.  For some reason He is allowing us to walk through this time.  To learn to lean so hard on Him and only Him.  To listen amidst the pain to His voice and learn that He is all I need and that He is walking with me through this. 

So

I adjust my focus.  Remind myself to concentrate on the blessings that surround me.

A box of goodies that just arrived on my desk that I was not expecting
Giggles at the arcade last night with Brooklyn
Today – we have today and we are together
A job that allows me some flexibility
Friends near and far that help meet our needs – rides, tree trimming, meals, a shoulder to lean on
A new church family that has embraced us

This new normal is not easy but it is part of God’s overall plan for our lives.  We may never understand the WHY but I trust and cling to the One who is in charge of each detail of our lives.

Prayers

Dennis had the second dose of his new medications today.  Please continue to pray that it is killing every cancer cell.  Also, pray that he handles this round better than the first one.   He really has struggled with the side effects of these new medications.