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. 

Starting New Treatments

 

New Medications

 

After 28 days of being off of all medication Dennis’ MRI showed very little growth.  We were very pleased with this as we were concerned about the amount of growth and/or possible new tumors.  Dennis was then placed into a new study drug trial, had numerous tests and finally on Wednesday he started the new medications. 

The standard medication used at this point is Avastin.  Dennis is on that medication now.  (Recent studies have shown that Avastin does not work with newly diagnosed patients but has been used for a number of years with patients with regrowth.) In addition he is in a trial drug program.  He saw the doctor on Wednesday prior to starting the new medications and he did well on his neurological evaluation.  The first two times he is given Avastin, they give it very slowly in case of a drug reaction.  Dennis had no reaction from it.  He will go once a week for treatments.  He will receive the trial drug every week and Avastin every other week.  He is more tired since he is on medication but that is to be expected. 

How are you doing?

We are often asked, “How are you doing?”  It is easy to give a report on test results and reactions to medications but that is not what most people as asking when they ask this question.  Most days we do OK emotionally.  There are days when this overwhelms us.  Are we tired of doctors, medications, MRIs, waiting on test results…?  YES!!!!!  Frankly, it is exhausting sometimes.   We tend to live life in 8 week chunks with each MRI approached with apprehension and stress.  We make plans always with a disclaimer that it depends on how Dennis is feeling and that we me need to change them if his condition and/or treatment changes.  But mostly, we try to live and enjoy each day.  Personally, I have never been so exhausted in my life – at least not for such an extended period of time.  I feel like I used to feel in the weeks leading up to Christmas – more to do than there is time to do it.  I’m so thankful for all the help our friends give us along the way and for boss who understands as well.  I know we could not walk this road without each of you by our sides.  Brooklyn is doing well too.  She had a very hard time dealing with the news that the tumors had grown.  We helped her to understand that if we spend today worrying about what may come; we lose the joy of today.  She is doing better with this. 

Not Our Plan A

Recently our pastor preached a message that touched both of our hearts.  He preached about how God is directing our paths even when our lives are not fitting into our Plan A vision for them.  We are definitely way off of our Plan A at this point.  You can hear the sermon here: (The first 16 minutes is a church vision talk. The sermon starts right after that.) 

 

Please keep us in your prayers.

• Dennis continues to tolerate the new medications well and that they destroy all of the cancer.

• Strength for the day-to-day living that at times is overwhelming and exhausting.

• Wisdom as we guide Brooklyn through this journey.

 

MRI Report

Dennis had an MRI today as a baseline for the new medication he will start early next week.  He has been off of any medication for almost four weeks and we were nervous about what this MRI would show.  We wondered if it would show more tumors and/or substantial growth.  I just talked with the doctor and the MRI report was good.  The doctor described it as substantially stable.  He said if there is any growth it is about 1mm.  We are very thankful for this.  His blood work also looked fantastic.

Dennis will be registered in the new trial later this week and should start the new drugs either Monday or Tuesday, depending on when they arrive at the hospital.  Please pray that Dennis handles this medication well and that it kills off the tumors.

Also, please keep me in your prayers.  I'm fighting off some sort of illness and not feeling very good at all.  I'm on antibiotics but not getting better.  I would appreciate your prayers.  I'll be seeing the doctor later today to see if there is anything else they can do to help me at this point.  Also pray that Dennis does not pick this up.

Choosing to Trust and be Thankful

I strongly believe that we are not a victim of circumstances.  We always have a choice.  But what about when life throws us curve balls that we can’t control?  We do not choose these events and frankly have absolutely no control over the outcome.  As we were driving back from our recent vacation to South Dakota, I was thinking about the choices I am making in regards to Dennis’ cancer and the impact it has on our lives now and may in the future.  I certainly cannot control this and did not choose it.  However, I do have a choice in how I respond to it. 

You see, at times, it is overwhelming.  I dearly love Dennis and my picture of our life together included growing old together.  My picture looked something like this – two elderly folks, sitting together on a porch swing, holding hands and just being together.  After adopting Brooklyn that picture included grandchildren and a son-in-law.  With Dennis’ diagnosis, that picture changed.  Short of a miracle, he won’t be part of that picture.  So what does that picture look like now?  I think there are two distinct pictures that could develop and my choices will determine which one occurs.  If I choose the path of bitterness and regret, that elderly lady sitting on her porch will be bitter with  a frown on her face and most likely will be very lonely because who really wants to be around someone who is bitter an angry.  On the other hand, if I choose the path of thankfulness for all of the years God has given us together and look with anticipation for what is ahead, that picture changes drastically.  No longer is there a frown but in its place is a smile and a sense of peace and joy.  There are people there, and not just immediate family.  Others surround her as she shares her joy, peace and love that develops from a heart fixed on her loving Savior and she realizes that this life is only for a moment and what lies ahead is far greater. 

I am choosing to trust God for what lies ahead.  I’ve had several passages of scripture challenge me in how I approach the days ahead. 

Matthew 6 ends this way:  Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.  In light of this, I am enjoying today and the time we have as a family.  Tomorrow will come and God’s grace will be there when we need it.

2 Corinthians 4:16-18: Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison,  while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.  Although this load seems so heavy at times, in light of eternity it is momentary and light. 

Philippians 4:8: Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.  Wow, this is a challenge to keep my thinking right.  So I will focus on what is true – Dennis is doing well right now and God is fully in control of every aspect of this journey.  God loves us and knows what is best for us even when it makes no sense to me.  God is good – ALL THE TIME!

Although I often cannot control or change what is happening in life, I can choose how I respond to it.  I’m choosing to trust and to be thankful!

What the Doctor Said

We saw Dennis' doctor today and he explained several possible options for treatment.  He was leaning in one direction but went through the pros and cons of each.  After discussing them with him, we felt his inclination had merits.  The MRI does show progression but it does not appear to be extremely rapid.  Because of this, Dennis and I chose an option that requires him to be free of any medication for 28 days.  He will then enter a trial program that will pair a drug that is standard treatment for recurrent GBM tumors with the trial drug.  He will receive the trial drug one day each week and the standard treatment drug every other week.  These drugs work by starving the blood supply to the tumor.  If Dennis would experience any indication/symptoms of tumor growth during these days off medication, we will revisit this plan and most likely start the standard drug immediately.  Please pray during this time that the tumor does not grow or that God would miraculously intervene and totally remove it.  Wouldn't that be amazing to have the MRI on September 9 show no tumor?!?!?!  He will have an MRI on the 9th and on the 11th he will reach the 28th day off of medication and they can process him into this trial.  Most likely he will start the medication on the following Monday, Sept. 16th.

We are trying to get some vacation time in during this period where Dennis has been feeling pretty good.  We don't know how well he will handle the new medication.  He still tires easily but we plan carefully and are able to do some fun activities.  We were recently in South Dakota for a week and had a great time.  We did a lot of driving around and seeing things but no hiking or overly tiring events.  Here are a few highlights of the trip.

Devil's Tower, Wyoming

We hope to do a weekend camping trip this weekend and get to Chicago another a weekend too before his treatments start again.  We have wanted to take Brooklyn to Chinatown and to Navy Pier.

Please keep praying for us.  Here are some specifics to pray for:

1. No or minimal growth of the tumors while Dennis is off of treatment.
2. That Dennis will easily tolerate the new medications and most importantly, that they will be successful.
3. Brooklyn - she really handled the news that the tumor was growing very hard.  She is doing better after we discussed it and assured her of God's love in all of this.
4. For Dennis and me as we seek God's direction and peace as we walk on this path.  

MRI Results

Dennis had an MRI today.  This is the first one since he started a new medication for the regrowth that occurred 8 weeks ago.  We were hoping to see no additional growth but unfortunately that was not the case.  There has been some growth and the doctor wants to move onto other options.  We will know more after meeting with him tomorrow but it appears they will start a new type of chemo and another trial drug.  

Please be in prayer for us as this news was disappointing.  In the midst of it though we are comforted with knowing that God is still in control and has a plan in all of this.  Also, pray that Dennis will tolerate the new treatments as well as he has the current one.  We will post more after we have met with the doctor.  

Conversations

There are conversations that I wish I was not having.  Many of them are with Brooklyn.  Sometimes they are subtitle teaching and other times very straight forward but I hope I am helping her prepare in case Dennis does not beat this terrible cancer.  

I’ve answered the question recently, “Is Daddy going to die from what is in his head?”  Ok, I’m glad she trusts us enough to ask and not just worry but how do you tell a child who finally has a Daddy whom she loves and who loves her, that she may lose him?  We chose to be honest.  Our response was, “We don’t know and the doctors are doing everything they can to help him.”  We also promised her that if a time comes when they can’t help Daddy anymore, we will tell her.

Last night she was sleeping with me because Dennis is spending a few days with his family.  Brooklyn asked me, “Are we still a family even though Daddy is not here?”  I could have simply answered, “We are always a family, forever.”  But I chose to take the opportunity to teach her that death does not separate a family.  We talked about how my Daddy is in heaven but he is still my Daddy.  I reminded her that God was with Daddy where he was and with us at home.  She loved that and soon settled in and went to sleep.

We have stopped at the cemetery where my Dad and grandparents are buried and talked about what happens when someone dies.  I am so thankful that I can assure her that although their bodies are in the ground there, they are with Jesus and that someday we will all be together again.   

There are conversations with Dennis about “what if…”  I’m so glad we can talk openly about this but it is another conversation that I wish there was not a need to have.  

And then there are the conversations with my Heavenly Father that are filled with petitions for complete healing and restoration, peace as we walk through this journey, and grace to glorify Him during this difficult season.  

A friend of mine told me she has been praying Psalm 34 for us.  As I looked up this Psalm, my heart was knit with the psalmist’s heart.  Brooklyn and I have started memorizing this Psalm.  It is bringing me great peace and comfort. 

Psalm 34

¹I will bless the Lord at all times;
    his praise shall continually be in my mouth.
² My soul makes its boast in the Lord;
    let the humble hear and be glad.
³ Oh, magnify the Lord with me,
    and let us exalt his name together!

⁴ I sought the Lord, and he answered me
    and delivered me from all my fears.
⁵ Those who look to him are radiant,
    and their faces shall never be ashamed.
⁶ This poor man cried, and the Lord heard him
    and saved him out of all his troubles.
⁷ The angel of the Lord encamps
    around those who fear him, and delivers them.

⁸ Oh, taste and see that the Lord is good!
    Blessed is the man who takes refuge in him!
⁹ Oh, fear the Lord, you his saints,
    for those who fear him have no lack!
¹⁰ The young lions suffer want and hunger;
    but those who seek the Lord lack no good thing.

¹¹ Come, O children, listen to me;
    I will teach you the fear of the Lord.
¹² What man is there who desires life
    and loves many days, that he may see good?
¹³ Keep your tongue from evil
    and your lips from speaking deceit.
¹⁴ Turn away from evil and do good;
    seek peace and pursue it.

¹⁵ The eyes of the Lord are toward the righteous
    and his ears toward their cry.
¹⁶ The face of the Lord is against those who do evil,
    to cut off the memory of them from the earth.
¹⁷ When the righteous cry for help, the Lord hears
    and delivers them out of all their troubles.
¹⁸ The Lord is near to the brokenhearted
    and saves the crushed in spirit.

¹⁹ Many are the afflictions of the righteous,
    but the Lord delivers him out of them all.
²⁰ He keeps all his bones;
    not one of them is broken.
²¹ Affliction will slay the wicked,
    and those who hate the righteous will be condemned.
²² The Lord redeems the life of his servants;
    none of those who take refuge in him will be condemned.