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.

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