Wednesday, September 24, 2014

27 Months

It has been 27 months since we learned of Dennis' cancer.  In those early days I would not even look at the internet to find out more about it.  I knew it was serious and terminal.  I couldn't cope with knowing the details.  Gradually I began to dig and learn more about it.  Average survival is 14 -16 months - I remember thinking if we would have one more Christmas, birthday, anniversary...

Today I look back at those 27 months and can look at it from two very different perspectives.  At times my heart screams to look at it through the losses these 27 months have taken from us while at others I choose to look at all the things we have gained.

The Losses

We entered this journey at a time when life was at its best.  We had just finished a year long journey to adopt our beautiful daughter Brooklyn and were just starting to settle into being a family of three.  We had good jobs that met our needs and our wants.  We were surrounded by good friends and were living the American dream.  We were able to travel and help others.

One of our early days as a family of three.

In the 27 months since Dennis has been diagnosed most of that life has disappeared.  Dennis has not worked since his diagnosis, I recently went on a leave of absence in order to care for Dennis.  Dennis can barely make it out to dinner without being exhausted so we don't travel.  In fact, I find it difficult to get out of the house at all as Dennis needs me here to take care of him.  Little by little over the last 27 months the person I love with all of my heart is disappearing.  

When I look at the picture above I wonder what happened to those people.  They seem so far away from where we are today.

The Gains

I must admit I have to remind myself to choose to look at the blessings of these past 27 months.  In the midst of this storm we live in day-to-day, the sunshine sometimes seems so far away.

But there is sunshine.  Over and over again we have seen God provide for us.  Whether that has been unexpected financial blessings or the labors of love from friends, we have been blessed.  

Brooklyn has been a spark of joy and life when everything else around us has plummeted.  I cannot imagine life without her.  In spite of all that is going on around her, she loves us deeply and has grown in her faith and love for the Lord.  

My faith has deepened as I have learned to depend on the Lord to meet the needs of our family.  To know that our security is not dependent on the planning I can do but in trusting in God to provide for tomorrow as He has today.  This is not always easy for me.  I want to plan and map it all out to make sure my world is safe and secure.  That is not where I can live anymore.  Frankly, some days it takes all of my faith to keep reminding myself that I am not in control nor should I want to be.

I have been meditating on Philippianss 4:11-13 - 
11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through him who gives me strength.

I am continuing to learn to be content whatever the circumstances may be.  Not because of anything in me but the key is in verse 13 - "I can do all this through him who gives me strength."

Where we are today - 

I miss the things we have lost.  Mostly I miss Dennis as he was then.  I miss his wisdom and leadership.  I miss the "security" in the life we had before.  My heart aches for the Brooklyn to have the daddy who adopted her.  For him to be here now to take her on dates or play with her and for her to have him to guide her through the years ahead.  I miss the security of good incomes and secure jobs.  BUT I know God has a plan in this and that gives me peace.  

Have you ever thought about Psalm 23 - I know many of you know it by memory but it struck me recently that David talks about being in the midst of the darkest valley and then goes on to say that goodness and mercy follow him.  Yes, I can assure you that even in this very dark valley, God's goodness and mercy is with us.  I do have to remind myself of that but He is there with me as I walk through this valley.  

Please remember to pray for us.  Dennis struggles with most everything you and I take for granted.  He needs help with bathing, dressing, getting up and down, walking, is hard for him.  Pray for me as I navigate taking care of Dennis and Brooklyn.  It is hard to be a mommy sometimes when Dennis has needs in so many areas.  Pray for Brooklyn.  She is in a new school this year and it is just one more layer of stress for her.  We know many of you pray for us on a regular basis.  Thank you.  

Sunday, September 21, 2014

Pray for Dennis When...

Today - Pray for Dennis when:
1. You are frustrated with your spouse for leaving their socks on the floor - Dennis can't take his off by himself.
2. When a dirty dish is sitting on the counter instead of in the dishwasher - Dennis can't take his dish to the counter to leave it there.
3. When the toilet seat is left up - Dennis needs help using the bathroom.
4. When you get in the car and it is almost out of gas - Dennis can't drive and use up the gas in the car.
5. When your spouse is hogging the covers - Dennis needs a hospital bed so we can't share a bed anymore.
6. When you just would like a few moments of silence - Dennis has trouble communicating even his basic needs.
7. When you are frustrated at work - Dennis hasn't been able to go to work for over 2 years.
8. When your computer is slow or crashes - Dennis has trouble using even a simple app on a tablet.
9. When you are waiting in line to check out at the store - Dennis does not have the energy to go to the store.
Savor today and all the joys and frustrations they bring. And remember to pray for us along the way.

I had posted this on Facebook a few days ago and decided to share it here as well.  This list could be endless.  Thanks for your prayers. 

Saturday, September 13, 2014

Our Daily Life

I'm often asked, "How is Dennis doing?"  "How are you doing?" "How is Brooklyn handing all of this?"  Often when I try to answer more than just a surface answer, "We are doing OK, " the conversation ends with me in tears.  I'll try to answer these questions here as I believe it helps you to pray more specifically and to understand a little better what is happening at this point.

How is Dennis doing?

Dennis has lived with this cancer, GBM for short or glioblastoma, for 27 months.  The average survival rate is 14-16 months.  He is still seizure free which is also very unusual.  

After completing radiation in June, he was extremely exhausted.  Although he has improved some in this area, he has days where he sleeps much of the day.  Some days are better but if he has been busy one day with company or going to therapy or the doctor, he most likely will spend the next day or two sleeping.  

The radiation and medications have impaired his walking.  He walks with a walker around the house and if we are going anywhere, uses a wheelchair.  He moves very slowly.  He has fallen a number of times but we adjusted a number of things to make falls less likely.  He has started physical therapy in the hope of building up his strength.  

His speech is also troubling.  Many times he has a hard time coming up the words he wants to say.  We have seen some small improvements in this area in the last week or so.  He is seeing a speech therapist this week to see if some type of communication system or app could assist him.

His hands are shaky and this makes writing and eating difficult.  We have a visit with occupational therapy this week to address these issues as well.

Dennis' thinking and reasoning abilities fluctuate.  Many times he is very clear and does well but there are times when he really struggles with reasoning.  If he is under any type of stress or tired it is worse.

It is hard.  Dennis struggles with where he is at.  There are times he is very sad but often he will talk about his faith and how it helps him.  

At the moment his tumor is stable so we are focusing on building strength and helping him manage the deficits that he has.  

How are you doing?

So much of that relates to what I have just written about Dennis.  My days are filled with meeting his day-to-day needs.  He needs help with all aspects of his life.  I am so thankful I have the skills to assist him having taught nurses aides these exact skills for over 20 years.

I give him daily shots, administer medications, help him shower, assist him with dressing, help him in the bathroom, prepare his food, cut up his food, help him into and out of get the idea.  By the end of the day I am exhausted.

I am working some from home but between doctor and therapy appointments I find it very difficult at times.  Of course I am also the mom of a third grader so that is a whole other level of activities.  Brooklyn brought home a fundraiser - selling magazines - last week and I wanted to cry or run screaming in the other direction.  After thinking it all through I just decided that there was no way I could do this and that was the final decision.  

I'm tired all of the time.  People tell me I need to take time for myself but it is almost impossible or it requires a lot of planning.  Because of the level of care that Dennis requires, I have to find people who can do these things if I am going to be away and not be concerned that his basic needs are not being met.   I am getting better at asking but it still is hard.  

I miss the pre-cancer Dennis so much.  I grieve for all of the simple things that I took for granted.  the other night I woke up and felt him snuggled against me.  It felt so comforting until I realized it was one of our spaniels and Dennis was in the hospital bed next to me, not cuddling with me.  I miss having someone to go to church with or to help me make decisions about big and small things.  This cancer gradually steals away the one you love while still leaving them physically present.  

I know his healing is coming.  Either God will perform a miracle or when he draws his last breath, he will be fully healed and in the presence of his Savior waiting for us to join him.  

How is Brooklyn doing with all of this?

Overall she appears to be doing well.  She has been asking a lot of hard questions recently about why God is allowing this to happen?  Why her life has been so hard? What will happen when Daddy dies?  Will we be safe?  I am so glad she is asking as it gives us a chance to talk about these things and for me to get a glimpse into her concerns about what is going on.  

She started school a few weeks ago at a new school.  She is doing well but I know this has also been one more layer of stress in her life.  She has been having stomach aches and I think they are largely due to all of the stress she lives with.  She is making new friends and doing well academically.

Where are we going from here?

We really do not have a good answer to that question.  We live day-by-day and trust God's direction for the next step as it comes along.  I often find myself seeking out the advice of those around me and appreciate their input as I'm not sure I am always thinking clearly in the midst of the stress and overload I live with.  I have sought the advice of a financial planner and a lawyer and will continue to do so as the needs change.  

Dennis has an MRI in October.  Since this all began in June 2012, we live from MRI to MRI.  Each one has the potential to change the "normal" we are living in at that moment.  Should the next MRI or anyone after it show the tumor is progressing, there are no options for treatment left at this point.  We have not yet used hospice as he would not be eligible for therapy if we entered hospice.  Should the tumor progress, we will enter hospice at that point.  

What can you do?

Please pray for us.  We need that most of all.  Pray for peace when it sometimes feels like our whole world has fallen apart.  Pray for wisdom on so many fronts.  Pray for me as I help Brooklyn process through all of her questions.  Pray for Dennis to gain some strength and communication skills.  Mostly, pray that we remain faithful to God and point those around us to Him.  I can honestly say, I have never known or experienced God's presence and provision in the ways I have since all of this began.  He is faithful even though Dennis has not yet been healed of this cancer.  He has a plan in all of this for each one of us and that plan is good.  I trust Him when it seems too much to just get up in the morning.  He is my hope.

Tuesday, September 2, 2014

Building the Ramp

Dennis has been having difficulty walking steps and last week on Thursday he could not get back into the house after we had gone out to dinner.  We got him in with the assistance of a neighbor but it was very clear that we had to do something.  A ramp needed to be built and he had an appointment for physical therapy in one week.  I knew he had to go to the appointment and would be very tired when he got home.  I was not sure with that short of a time frame if we could get a ramp constructed in time for his Friday appointment.

I called up our Bible study group leaders and ask if they could help organize the guys in the group to build a ramp.  By the end of that day the plans were in place to build the ramp on Labor Day and all the costs of building it were covered as well.  We were amazed.

We chose to put it in the garage so we would not have to deal with ice and snow on it.

I'll let the pictures speak for themselves.

Brad, Ric and Bill

Attaching the top.

Building in the supports.
Even Brooklyn helped.

Adding the safety lip.
Dennis watching the finishing touches go into place

Finished with the project.

 A huge thanks to Bill, Ric and Brad for their construction work and to the Laura and Sean for their help with organization.