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.

This Is It

We have come to the finish line.  As of today, Dennis is done with treatment for the brain tumor.  This afternoon he will have his last dose of medication.  I don’t know how we got here.  When this all started last June, the end of treatment seemed a long way off and now we are there.  In all likelihood, this is NOT the end of the battle as the probability of this coming back is extremely high – almost 100% - but for now, it is the end, at least of this stage in our lives.  

He will have an MRI late in the day on Monday and on Tuesday we will meet with the doctor to get results and discuss what happens from this point forward.  We know he will have MRIs every eight weeks. 

Now we enter a new normal.  How long this one will last is yet to be determined.  There are many decisions to be made in the days ahead and also unanswered questions.  We have often said we won’t know what long-term affects the tumor, surgery and treatment had on Dennis until he is off of all medications for awhile.  In the weeks ahead we will finally be getting the answer to those questions.  Some of the questions we have are:

• Will the fatigue subside?
• Will the short-term memory problems go away?
• Will the word finding/substitutions be better?

From what we know, we expect some of the fatigue to be better but it may not completely go away.  Frankly, just thinking can be exhausting at times and the more complex or rapid the conversations, the harder this is.  A common long-term side effect of brain radiation is short-term memory problems so this may be permanent.  Since the speech center of the brain is where the tumor was located, the word finding difficulties may also remain.  In spite of these things, Dennis is doing very well considering what he has been through.  Yes, these problems may impact him the rest of his life and keep him from working again but only time will tell us the whole picture.  

We are thankful for all of the people who have helped us over the last nine months.  The medical staff at the UW Hospital and Clinics have been wonderful.  We are blessed to live so close to such an awesome cancer clinic.  Our family and friends have lifted us up and helped us over and over again. Whether it was a word of encouragement when we were discouraged, prayers for us, a meal when I was exhausted, gift cards to go out, monetary gifts, numerous rides to appointments for Dennis, breakfast/lunch dates for Dennis, help with our yard work, babysitting with Brooke…we are indeed blessed to have such an awesome group of family and friends.  We can’t begin to say thank you.  We are keeping his Lots-A-Helping Hands sight up because he will still need rides to his MRI appointments and any other appointments that may come up.  If you aren’t part of the sight, there is a link in the right column that you can use to join the group.  When we have needs, we post them there.

We continue to rest in the care of our loving heavenly Father.  We know He has a plan in all of this.  We don’t know what is coming next but we know we can trust Him to care for us along the road.  Keep praying that Dennis will be one of the very few long-term survivors of this cancer. 

What's Up with Dennis?

Milestones:

Dennis completed chemotherapy on  February 10^th.  He still has two weeks of the other medication and then he is done with treatments.  He has an MRI on March 4^th and we meet with the doctor on March 5^th to get the results and if there is no regrowth, he will be done with treatments.  Every eight weeks they will do an MRI to continue to monitor for changes.  

Dennis needed a haircut.  Now I know that does not seem like a big deal, but he has not had one since he had radiation in August, other than shaving the areas that did not lose hair from radiation.  

Challenges:

We have expressed here often that Dennis battles fatigue on a daily basis.  This fatigue may be coming from the chemotherapy or the other medication he is taking.  We do not know if this is going to subside after he is done with treatment.  From what we have learned, some people struggle with fatigue permanently following chemo.  Many things exasperate the fatigue.  It can come from a long day without adequate rest or from keeping up with activities and conversations when he is with people.  Don’t get me wrong, he loves it when people come and visit or take him places.  Getting out of the house is a blessing when it happens.

In addition to the fatigue, Dennis does struggle in a couple of areas, all of which are worse if he is tired.  It is a vicious cycle.  He says he feels much the same as he did just before we discovered he had the tumor.  He has difficulty finding the right words at time or will substitute a word.  Sometimes he is aware of this happening and sometimes not.  In addition, he also has some short-term memory challenges.  It is similar to when you go to a room to get something and then forget why you went there.  As you can imagine, this can be very discouraging and frustrating.  There are several things that could be causing this.  First, he has had brain surgery and they removed tissue from his brain.  Also, he had six weeks of radiation.  The effects of radiation develop over time as radiation stays in the brain for awhile.  Not only does it kill off the cancer cells, some healthy cells die as well.  Again, we will not know the extent to which these challenges are permanent until all of the treatments are done and some time has passed.  

Don’t get me wrong, Dennis is doing remarkably well considering the type of cancer he has and all that he has been through.  From time-to-time I read other people’s blogs about this cancer and I marvel at how different their stories are from Dennis’.  We truly are grateful for lack of complications Dennis has experienced.  

Moving Ahead:

We appreciate so much your prayers and on-going support.  In the weeks ahead we will transition to the next phase of this journey.  There will be adjustments for us in so many ways.  

Our lives have settled into a pattern of visits to the hospital for twice a week treatments which will end at the end of the month.  I’ve mentioned before that in some ways this is scary as there are no longer chemicals attacking the cells that may still remain.  

We face the question of if Dennis can go back to work considering the challenges he is currently facing.  There may not be an easy answer to this until we know what is related to the medications and what is permanent due to the treatments.

In all of this, we also face accepting a new normal in many areas.  As you can imagine, it is difficult at times for Dennis to struggle with things we all take for granted – speaking easily, remembering something that just happened, being tired… but these may be the “normal” he will have to live with.  This new normal also includes reminders with every MRI that our lives could drastically change again if some regrowth happens.   As treatment winds down, Dennis also has to adjust to even more days where he is unable to get out of the house unless someone calls and offers to pick him up.  Not driving is difficult in so many ways.  

Dennis and I were talking last night about how we know God has a plan and purpose in all of this, it still is tough sometimes and we don’t like it.  Who would ever say that they wished for a very difficult time in their lives?  No one!  And yet God continues to impress upon my heart a single thought that He has been saying to me from the first days of this journey – WAIT.  I can’t say I totally understand what that means but I do know it means I am to wait and while I am waiting -  to worship Him, glorify Him, praise Him and trust Him and in the midst of the waiting to rest in the assurance of His love and care for us.  

Prayer Requests:

• Complete removal of all the cancer from Dennis.
• Clear MRI on March 4^th.
• Restoration of Dennis stamina and thought processes.
• Peace as we wait.
• Wisdom and clear direction regarding Dennis’ job.

Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.  But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when His glory is revealed.  I Peter 4:12-13