Going Through the Motions

I recently read the blog of a woman whose husband had suffered a traumatic brain injury.  Her experience and feelings so well described how I live most days.  Her description included several points that struck home with me.  

 

“With all of us on edge, we tried to be the family we used to be; we went through the motions of sharing food, of trying to talk about ordinary stuff when our life was anything but ordinary.” 

I cherish days or more accurately, the moments, when life seems normal.  Just doing the simple things I used to take for granted are welcome respites from the constant changes that are going on around me.  However, little things that used to require little to no thought or preplanning now can take a great deal of planning.  Here is a simple example from this week.  Mother’s Day is around the corner.  Normally, Dennis and Brooke would have gone shopping and had a great time together while I would have had a few hours to do whatever I desired.  This year, we had to plan a time when I could take them, I needed to find something to do while they shopped, plan this to include supper and still get Brooke home in time for bed because it was a school night.  It worked and everyone enjoyed the time – I even got some new sandals while I was killing time at the mall but it was not a simple as it used to be. 

 

But back to the point of this blog, when life looks very normal to someone looking in, it often is just going through the motions.  Underneath it always is a layer of fear and uncertainty.  I am always watching for signs that Dennis is getting tired or is struggling with words.  If we are out with friends and I’m not right with him, I will be checking in often to see how he is doing.  If you have been with me and I suddenly step away or check my phone– it is not that I am bored with the conversation but rather that I need to check in and frankly, if I am worried about how he is doing, I’m not paying attention anyway. 

Frankly, I don’t think there has been a moment since Dennis was diagnosed almost a year ago when I was not acutely aware of the diagnosis hanging over us.  It takes a conscious effort for me to live in the moment and enjoy it.  I try very hard to do this.  Dennis and Brooklyn both need that and so do I.  I want to cherish our time together and make lasting memories.  I want to firmly implant in my mind and heart what this time of our lives is like, to do the ordinary things like watching a movie together or snuggling on the couch. 

We hope that there are many more years ahead but we just don’t know, really no one does but for us this thought is in the forefront rather than an afterthought.  So for now, I will live, even if at times it is more like going through the motions.    

James 4 says this about life:  Come now, you who say, “Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit”— yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, “If the Lord wills, we will live and do this or that.”

Your prayers and encouragement help us to live in the moment.  It is not always easy but we are so grateful for this time we have right now.  Most people with this type of cancer never have this. 

Prayers:

• Dennis’ continued health and clear MRIs.  His next one will be at the end of June.
• Increased stamina for Dennis.  Fatigue continues to be an overriding concern.
• Complete restoration.  Although by human standards, this is impossible, but with God, all things are possible.
• Peace.  On a day-to-day, moment-to-moment, we need to have an awareness of the peace only God can give. 

Good News

I will make this post brief as it is getting late and has been a long day which followed on the heels of a poor nights sleep for both of us.  It seems as if each MRI is more stressful as we approach it and wait for the results.  I think some of this stress is due to the fact that we start thinking that according to statistics on this type of cancer, it often reappears around this time.  If you look at statistics, it is not good and we try to avoid dwelling on them but when it is time to "take a look" with an MRI, it is very difficult.

With that said, we were thrilled when the doctor called this morning to tell is the MRI was clear again.  We breathed a sigh of relief and made some quick phone calls and posted on Facebook with the good news.  We saw the doctor later this morning and the news continued to be good.  There has been a spot on the MRI since Dennis' surgery in June.  The doctor told us he thought the spot was most likely residual material from the surgery but could also have been tumor.  Whatever it was, on the MRI from Tuesday it was GONE!  We were thrilled to hear and see that change.

Dennis will have another MRI in eight weeks.  We tend to live in eight weeks chunks of time.  After the stress leading up to an MRI we are always glad to have some time to just live.  There will be several milestones between now and the next MRI.  Dennis will celebrate his 50th birthday at the end of May and on June 8th we will celebrate the one year mark since this all started.  Many people with this type of cancer never reach that milestone.

Dennis is now eight weeks since his last treatment.  He is doing well but still battles fatigue.  In addition, he struggles some with finding the right word for things. Rapid conversations also can be challenging and contribute to the fatigue.  We are waiting to hear from the long-term disability company regarding his on-going disability.  We should hear from them later this week.  Please continue to pray that this will go through easily.

Dennis hopes to be somewhat more mobile next week.  We ordered an electric bike for him and he should get it next week.  This will allow him to get around town and if he gets tired, he can get home without having to expend too much energy.

We appreciate all your prayers and words of encouragement.  Please continue to pray that this cancer stays away and that Dennis gains some strength as stamina.  

Here We Go Again - MRI Next Week

I’m not sure where the last seven weeks have gone since Dennis’ last MRI.  Next week Tuesday, he will have another MRI.  This is the first one since the end of treatments so it adds a new layer to the stress of these.  We will get the results on Wednesday.  Please keep us in your prayers this week and next as we approach this evaluation.  Dennis has had no increase in symptoms to make us think anything is going wrong but with brain tumors, you often don’t know there is a problem until it is well established.  

Overall Dennis is doing very well.  He continues to be plagued with fatigue.  This is the problem that over rides everything else he attempts to do.  When he is feeling OK and sets out to do something, he often finds that his energy is gone very quickly.  It is frustrating for him as he would like to be able to do more and hopefully get back to where he was prior to the cancer.  We are daily adjusting to this new “normal”.  We are learning all the time how to plan in order to accomplish priority tasks without totally exhausting him. 

We have been exploring options on how Dennis can get out of the house.  We had considered a scooter with a sidecar for Brooke, but after seeking the advice of some brain tumor survivors and people that work in this field, we decided it was too risky.  So, that moved us on to other options.  The goals were some mode of transportation that would not expend too much energy and fatigue Dennis, would allow him to get into town and also allow for him to take Brooke along.  After some shopping and investigating, we settled on an electric bike.  This will allow him to get the exercise he wants when he is up to it and also have the ability to not expend energy just getting to a location when he needs to preserve the energy he has.  It also allows for him to pull a child carrier for Brooke.  Because it is at a slower speed than a scooter would have been, it greatly reduces the risk for Brooke to go with him.  The bike should arrive sometime in the next two weeks.

 

Please keep us in your prayers in a special way in the next seven days.  Pray for our peace as we wait for results and for those results to show no regrowth. 

Happenings at the Hierls

Being done with cancer treatments has been a mixed blessing.  On the one hand, we are glad this phase is over but on the other, it is a bit scary that nothing is being done to fight it.  By all external appearances, Dennis is the same.  Of course, until his next MRI at the end of the month, it is impossible to know what is going on.  Dennis still struggles with fatigue.  He has days that are better than others but overall he tires easily.  He is finding that when he is in noisy environments or carrying on conversations he tires very easily.  He does what he can when he feels up to it and rests as he needs too.  We are also learning to plan for this.  Mostly that means not to plan too many things or long things into one day.  

One of the biggest challenges has been Dennis’ inability to drive.  We understand this restriction.  The type of cancer Dennis has has a high probability of returning and often the first indicator of the return is a seizure.  If Dennis were driving when that happened, it could be a risk to himself, his passengers and anyone else on the road at the time.  This has left Dennis largely home bound.  Just recently the doctor has approved Dennis to drive a scooter as long as he wears a helmet.  This reduces the risk of him hurting others if he should have a seizure while driving.  We are hoping to work out the details of him getting a scooter that would allow Brooke to go places with him as she will be home with him during summer break.  We have been working with a scooter shop in Madison on this and are close to having all the questions answered.  This will give them some mobility.  It will allow them to get to the pool for swimming lessons for Brooke, to the library, out for lunch, to a park…  Brooke is out of school at the end of May so we would like to have this ready to go by then.  If this does not work out, we will be back to considering an electric bike.

Brooke goes to AWANA and one of the events they do in spring is a pine car race.  Dennis and Brooke engaged the help of our friend Dennis Stewart and built her car together.  I’ve seen the video they took of the day they built it and it looks like they had a great time.  The race is on Wednesday.

A Quick Update

Dennis is doing ok since ending treatments.  He still is battling extreme fatigue, for instance, this morning he got up and seemed to be doing ok.  He got ready for the day and we met some friends for lunch.  We hadn't even gotten our food and he was exhausted.  We enjoyed the time with friends but he went to bed as soon as we got home.  He has been sleeping for several hours.

In addition, he is really struggling with how confined he is because he is not allowed to drive.  He doesn't have the energy to use a bike for any distance and he is concerned about his balance too.  Unless someone comes to pick him up and take him someplace, he really is stuck at home.  We are considering an electric bike for him to use this summer.  We've looked at them online but would like to get to some bike shops and see if they have them in stock.  It is highly doubtful that his doctor will let him drive anytime soon.  This doctor is extremely cautious about letting patients with this type of cancer drive as the possibility of regrowth is so high and even though Dennis has never had a seizure, they are very common with brain tumors.  It makes sense but it does not change the fact that being stuck at home is hard.  Because we live outside of the city limits in a township, taxis are expensive too but it is one way to get out when he wants to.

During spring break we were able to get away.  Because we waited for the MRI results before deciding on a vacation, we had about a week to prepare.  We originally had hoped to go to Disney but realized there was no way Dennis could handle a trip there.  It would have worn him out too quickly.  We considered Chicago but again, way to much walking. We settled on Branson, MO.  It was a great choice.  We booked at the last minute and got a great cabin to stay in at a very good price.  This allowed us to sleep in and make breakfast in the cabin.  We also usually ate supper at the cabin as well.  We went to several shows and this worked well for Dennis as he didn't have to exert a lot of energy.  On the way down we stopped in St. Louis and went up into the Arch.  We got home just before a major snow storm went through MO and IL.  We were so blessed to be able to do this vacation. We got our show tickets at a discount and drove our Prius down.  I think we only filled up three or four times and we did over 1400 miles.  Several friends had given us gifts that helped us be able to do this trip.  It is important to build these family memories while Dennis is doing well.  We never know what news the next MRI will bring.

Dennis and Brooke at the Arch in St. Louis.

At the top of the Arch.

Dennis and Brooke looking out from the Arch.

Brooke in front of our cabin.  It is a duplex so we stayed in the left side of it.

Dennis, Brooke and King Kong in Branson, MO

We had a few inches of snow while we were in Branson.

Dennis' next MRI will be at the end of April.  Please continue to pray that this cancer does not come back.  Also, pray for him as he continues to adjust to this new "normal".  We are in the process of being reviewed for his disability and would appreciate your continued prayers that this goes through smoothly.  With the fatigue and other word and memory issues he is unable to work.

Dennis' Doctor Appointment - What's Ahead

As I said in an earlier post, the MRI looked good.  We are very thankful for another good MRI. Each time these are done, there is always the possibility that they will find some regrowth. Hearing it looks good always brings a sense of relief.

So, for the first time in a very long time, Dennis will not be heading to the hospital twice a week.  He will go in every four weeks to have the port cleaned out.  The port is used to draw blood when needed, deliver IV medications and the medication they use during the MRI.  If it is not used all the time, it has be be flushed at least once a month.  On April 30th he will have an MRI and we will see the doctor May 1st.  He will have MRIs every eight weeks.  Unless we would notice a change, those are the only times he will have to go into the hospital.

From the beginning of this, Dennis had hopped that once he was off of the medication that he would have less symptoms and more stamina.  That is not proving to be the case.  We discussed this with the doctor today.  It has also been Dennis' hope that he would be able to get back to work but that is also looking more doubtful.  Unless his stamina would improve and some of the other symptoms go away, it is unlikely that he will return to work, at least not right now.  He will have to have his long-term disability reviewed in the weeks ahead so please pray that goes well.

We continue to see God's hand at work in our lives.  Each time we have milestones in this journey, we know your prayers are being answered.  Please keep praying for no regrowth.

Clear MRI

The doctor just called and the MRI is clear.  We will meet with him later today to discuss what happens from this point forward.  I'll post more after that meeting.  We wanted you to know that the MRI is clear.  God is working, please keep praying.