Saturday, March 30, 2013

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.


Tuesday, March 5, 2013

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.

Thursday, February 28, 2013

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. 

Tuesday, February 19, 2013

What's Up with Dennis?



Milestones:

Dennis completed chemotherapy on  February 10th.  He still has two weeks of the other medication and then he is done with treatments.  He has an MRI on March 4th and we meet with the doctor on March 5th 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 4th.
  • 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

Sunday, February 10, 2013

Last Month

This is officially the last month of Dennis' cancer treatments.  On Wednesday he started the last chemo.  He will take the last pills tonight.  He has three more weeks of the other drug that he gets on Wednesday and Thursday.  Please keep praying that any remaining cancer cells are killed in this last round.  From that point forward it will be MRIs every 8 weeks to watch for any regrowth.



Prior to starting this round of chemo, Dennis felt good enough to take a few runs on a sled with Brooke.  They both had a great time.  I took turn at it too.

Prayer Request:
  • Complete removal of all cancer cells.
  • Recovery from the fatigue he is dealing with.
  • Peace moving forward into the unknown.
  • No regrowth of the tumor. 

Tuesday, January 29, 2013

Time is Precious


Has it really been eight months already since we learned of Dennis’ brain cancer?  There are times when it seems like our world turned upside down yesterday and others when it seems like it has been forever since life was “normal”.  I desperately want time to drag by right now.  The further out we are from the initial treatment, the more likely it is that this awful cancer is coming back and frankly, unless Dennis would have a major change in symptoms, there is no way to know if anything is happening except for an MRI which he has every eight weeks.  So, every time he is tired and has trouble finding a word or just finds it hard to think, it makes us stop and wonder if something is going on again.  I want to hold onto right now; to cherish every day.  And yet, the days, weeks and months speed by.  In a few days we will flip another page on our calendars and I can’t help but think, “Where did that precious month go? “  

We have learned to live in the new normal for the most part.  It does present its challenges.  Simple things like dropping a car off for a repair is not so simple when there is only one driver in the house.  Or, for Dennis, passing days when he is house bound, and this looms even larger as he finishes up treatments in a month.  Granted, two days a week heading to a hospital is not fun but at least he sees other people along the way.  For those of you who have been his drivers for these appointments, you are much more than a source of transportation.  You are encouragers and friends who have lightened our load in more ways than being a ride to an appointment.  We can’t begin to express our appreciation to you.  

And so, we are heading into another change in the weeks ahead.  Next week Dennis will have his last round of chemo and on February 28th will complete the last cycle of the other medication he is on.  An MRI will done on March 4th and we meet with the doctor on March 5th for results and information on what happens after treatment.  We do know he will have MRIs every eight weeks to monitor him.  We are hoping and praying that once he is off of the medications that his MRI remains clear and that the side effects he has been living with go away.  From what we have learned the fatigue he is experiencing may or may not go away.  Only time will tell if this is permanent or not.  A lot of what happens in the months after treatment will be determined by this.  

To be honest, we have very mixed feelings about the end of treatment.  On the one hand, it will be so nice not to be having all of these drugs and the fatigue it causes be part of our lives. But on the other hand, there is a sense of security that every week there are chemical warriors attacking any cancer cells that may be remaining.  In addition, there is the unknown of what will remain of the struggles Dennis faces from the surgery and treatment.  We really will not know that until he has been off of the medication for a while.  

Please keep us in your prayers as we move forward into yet another new normal.

Prayer Requests:

  • That the five remaining weeks of treatment will totally eliminate any remaining cancer cells.
  • That the MRI on March 4th will be clear.
  • That all side effects will disappear after Dennis is off of the drugs.
  • That we will have peace when faced with the various unknowns on a day-to-day basis as well as the long-term.
  • That the doctor will clear Dennis to drive again.
  • That we will continue to see God’s hand in all of this and that he will use us in the lives of those we come in contact with.