Glioblastoma, Stimulation and Brain Fatigue – How to help the GBM patient.

I have a couple of things to share today that will hopefully help others understand Mike a little better.  These things are not something that I wrote, but things I came across from other brain cancer warriors.  People don’t seem to understand why we don’t go to Sunday morning church often anymore, out to restaurants or friendly get togethers, and why we try to limit visits to short visits.  Too much stimulation is so hard on him.  If you are around our house, you will notice that I try to keep Kenzie busy with a lot of crafts and outside play when the weather is nice, and that the teenagers spend a lot of time in their rooms –  this is me adapting the only way I know how to give Mike the silence that he needs.  Even the smallest disagreement between the kids, or even them interacting, having a lively conversation and giggling, or simply the noise of opening the fridge, getting a plate, going into the silverware drawer, and opening a can of soda is too much for his brain.  It is hard for a teenager to get scolded for “making too much noise” when they are just getting a snack.  We adapt, but its been a learning process for all of us.  We are all trying to work together to make the house as quiet as possible for Mike during those times that he needs quite.  If people are visiting from out of town, it is best if they get a hotel room so that he can have the rest time he needs, and then he can think clearly for a good visit.  He feels a lot of pressure to be “on” when people visit, so too many hours in a day, or too many days in a row are hard on him. Having visitors also brings Kenzie’s energy and excitement level up, and that is a stress to Mike.  Its so hard to explain as this is new territory for us.  We aren’t saying we don’t want visitors, we are just saying that we have to go about having visitors in a new way and we are having to communicate exactly what Mike needs and we hope that everyone understands and doesn’t get offended.  For him, it isn’t just a matter of getting a good night of sleep to recover from a busy day.  He often ends up in bed for days straight if he has too much stimulation. He can usually enjoy a good 4-6 hours awake and then his brain starts to get fuzzy.  I’m finding that I have to be his advocate in so many new ways.  So, onto the info that I found and want to share…..The rest of this post is in another brain cancer warriors words, but it really is a great verbalization of what Mike is going through.
 
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“Brain Fatigue vs Physical Fatigue

Our brains get tired!!!! For us with brain tumors, and the damage from the tumor and the treatment, it makes it VERY difficult to do the normal “thinking”. “Normal” people THINK about things easily. For us brain tumor patients, it is like a mental marathon just thinking about what to buy at the grocery store! So it is our brain getting over stimulated that causes us to break down and be fatigued. Our brains just shut down!

After keeping a journal of my good and bad days, I realized that my bad days, were I feel like a veggie, is the day after I have a busy and noisy day! My brain needs to recover. Like a person after running a marathon race needs to take a break to recover their muscles. We brain tumor fighters need to recover from over working our brains! We will lay on the couch like we are warn out, because out brains have shut down!!!!

SO don’t be surprised if your loved one is still all fatigued and tired, even thought the radiation and chemo is over! They will be that way the rest of their life! It is “brain fatigue”, not physical fatigue from chemo. The KEY is to learn how to work around it!!! I have realized I have about 4 hours a day of “sharp” brain function, then it goes down hill fast. So if I want to be perky and thinking straight for a dinner event some evening, I need to make sure I have a VERY quiet relaxed day before that evening, so I can have the perky energy and brain function to talk and be part of the event. If I go grocery shopping (which takes a lot of thinking and background noises), then I would be a veggie that night at the event.

My hardest days are the weekends when my two boys and husband are at home with me all day on Saturday and Sunday. I LOVE being with them and having fun, but the busy sounds of talking, doing, interacting, thinking, noises from my boys, etc. WEARS my brain down. Monday is recovery day for me! I NEED hours of complete silence each day! So please you caregivers understand, that your loved one needs some QUIET time each day to give their brains rest!!! We are not “normal” anymore! We will not get back to “normal”.

Sometimes I need to “do” something in the morning, like go to a kids event at school. If I do, I need to come home after the event, and have COMPLETE SILENCE for a few hours to recover form the over stimulation in my brain, so that later that day when my husband gets home from work and boys from school, I can be functioning again that evening. Like I said, I think many patients (or caregivers) don’t realize that our brains are fragile!!!! Treat them gently!!! We can only handle so much “thinking” in a day. ANY background sounds, over stimulation, big groups of people talking, etc. is way hard on us!!!

In the past I often reacted to my “over stimulation” by depression, wanting to be alone, not wanting to interact with other people. But now I realize that I fell into the fatigue and feeling bad, because I was “allowing” myself to be over stimulated too much! Now I have learned to work with what I’ve got, and old warn down brain. So by giving me my QUIET time needed, my brain and body can work MUCH more perky and clear, the hours I really need it.

 

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My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

If I seem “stuck,” my brain may be stuck in the processing of information.  (It may also be an indication that I need to take a break.)

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

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Aside

Mike’s last Duke appt was relatively good news.  These types of tumors are so aggressive, but the regrowth that he had show up in June has not spread – so that is awesome.  From what I read, the life span after regrowth is detected is usually just a few months.  During the neurological exam there was concern because he couldn’t follow simple directions. (Put your left hand on your right ear.  She pointed to her watch and said “What is this?” and he couldn’t figure out the answer) But after looking at the MRI, the doctor was pretty excited that there are no new tumors and no growth on the current tumor.  She said it looks like it just might have improved ever so slightly.  Mike was a little bit like “What just happened?” after the appointment because the doctor and I were so happy but he didn’t quite understand that excitement since in his eyes all that he really found out is that he is to continue chemo and that he still has the brain tumor/cancer.  Understandable.  He is fighting an uphill battle.  I explained basically that we are so happy because he is alive, and that in itself means that he has already beaten so many odds at 18 months past diagnosis for GBM.  I also validated to him that I understand that his quality of life seems so bad most days and that I understand him not being excited like we were.

He had his 7 day break and just started 21 days of chemo again last night.  Most days he sleeps at least 18 hours in a 24 hour period, but yesterday he was up from 8am to 8pm!!!!  That was huge.

Also…how do I even say thank you to everyone who encourages us…I appreciate every single word of encouragement that we receive.  This week I have been really overwhelmed with encouragement and support. Just this week alone, I received cards of encouragement, help with the kids, dinners, cash and gift cards.  I am sitting here dumbfounded not knowing how to express my gratitude, but please know that I am thankful. I’m encouraged and my spirits are lifted. Even for those who are my facebook friends who I have never even met, when you take the time to respond to one of my posts with an encouraging word or with prayers, I appreciate that so much.  I have friends of friends bringing dinners…it is all heartwarming.

From the bottom of my heart, THANK YOU.

Glioblastoma and Depression

I’m not going to pass judgements and say that Mike is or is not depressed….because he is dealing with Brain CANCER.  Thats rough. Its physically painful, and emotionally devastating. The treatment can cause fatigue and all sorts of physical issues.  To call it depression – maybe that is what it is – whatever it is or is not…Mike only gets out of bed on Sundays to watch football, and for doctors appts.  He doesn’t leave the house much.  Sometimes its because he doesn’t have the energy but sometimes its because he feels bored and just wants to climb back in bed. The truth is that he stays in bed a lot more then the doctors would like him to.  Staying in bed too much can cause you to lose muscle.  If you get weak then the chance of falling and hurting yourself is more likely.  Getting out of bed is key to keeping his body healthy, and it would definitely make a difference in keeping his mind healthy. Some of these blogs aren’t really an “update” specifically, they are more information for others who are battling.  So depression is just something I want you to think about and keep an eye on if you are taking care of someone with cancer, or if this is your battle also.  Feel free to give me any feedback in the comments section.  You may have insight with depression, or ideas on how to avoid depression. 

Another thing I wanted to mention for the locals…Mike hasn’t had a friend visit in months and months.  He isn’t asking, but I know that it would improve his fight if he felt like people care and if he could have people to talk to.  So, The Saints game plays on the 27th.  If you’d like to come watch the game with him at the house, just get a hold of me and let me know so that I can (first make sure he showers that day! lol) and make you guys some little party foods.  I have two “Maybe’s” for the day.  I don’t want to push anyone to come, but I did want to reach out to those who have been thinking “Well, I’d really like to see him, but I don’t know how he is feeling and its awkward.”  He isn’t “himself” most days, but let me tell you…on football Sunday he was hootin and hollerin like his old self and I was like “wait, what the heck is this?!  Where did the sick guy go?”  lol

I wanted to throw that out there for you guys.  If you want to visit, you are welcome.  Just contact me and we can figure out a good time a day.  If it is preplanned we can make sure he sleeps until the time, and then he will be good for an hour to visit.

 

 

Recent snapshots

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I just wanted to share some snapshots. The first are from our recent weekend away at Great Wolf Lodge and our last Duke trip.  GWL is so awesome for us during this time of our lives.  Mike needs a lot of rest, so there he is able to stay in bed as much as he needs to and we can still check in with him all day long.  He is able to spend time with the kids in small doses and really make some great memories.  I fell in love with that place a couple of months ago when we were desperate for a mental break and it was the best. It is not a cheap place to go though! Getting us there this time was a collaborative effort with the Navy Marine Corps Relief Society, Fort Eustis Army base MWR and The Semper Fi Fund!!!  I know I have mentioned The Semper Fi Fund on facebook, but I just want to recap a little. My sister and brother-in-law run the Marine Corps Marathon to raise money for this organization, and I did the 10K before Mike got sick.  That year we went to a spaghetti dinner for the Semper Fi Fund the night before the run, and let me just say…. I was touched.  After that I did a fundraiser with my photography donating proceeds from mini sessions.  I had no idea that this organization would end up being one that helped us through the hardest time in our lives.  🙂  They help injured Marines and Marines with life threatening illnesses in so many ways.  I didn’t even think to reach out to them when Mike got sick, but my brother in law did for us.  Its just the coolest organization.  My brother-in-law’s team raised over $26,000 last year for them!!!  The marathon is coming up soon, and now that I have gone on about it, I wish I had the link to his donations page, but I honestly didn’t sit down at the computer with this post in mind.  I was just going to post a few pictures.  The last couple of pictures are from the recent Duke trip.

 

And I can’t forget this photo!

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August 8, 2013 – Surviving Glioblastoma Update

We haven’t been to Duke since June, but I still just wanted to give everyone a small update just to reassure you that we are hanging in here. We will know more August 27th with our next Duke visit, but as we learned last time, we sometimes need time to process the news before sharing anything. We also leave the appts and drive straight home, so that day is usually pretty tiring anyways.  He finished his round of 21 days of the new chemo, (Etoposide) and going into a week long break before starting the next 21 day round. He also continues Avastin infusions every other week and blood work each week.  His numbers have held up well so far and we have already picked up the next round of chemo.

At this point, he pretty much has 3-6 hours out of bed each 24 hour period, depending on how much activity he had the day before. He has good days and bad days, so its hard to give an update on how he’s feeling.  It is very random, but he doesn’t have a lot of energy for too much.  When he feels bad, its mainly naseau, fatigue, headaches, all over aches and pains, and that foggy confused feeling that he gets.  He get a little unbalanced, but there have been no falls. (Other caregivers will relate.  Every time we go to the doctor, one of the questions is if he has fallen, and I hear that a lot of other patience struggle with balance too.) 

Thats about it for now.  Thanks for all of the prayers and support.  We appreciate everyone.

Link

Fundraising Page

I’m not sure how exactly to express my gratitude to each of you that have donated, except to tell you that I really appreciate it. Thank you for reminding us that “No one fights alone.” I wouldn’t want anyone to sacrifice money that they don’t have, so I understand that there are many more people standing with us in this battle thinking about us and praying for us then just those that donated financially. We appreciate the donations, and we appreciate the thoughts and prayers of our friends. I realize that every donation is a sacrifice, and I appreciate that so much.  Thank you to those who aren’t able to donate, but that have passed this fundraising page onto their friends anyways. 
In one week we will be at Duke and will have more information on whats going on with Mike’s brain.  Since the last appt we have felt an incredible amount of stress, but also are comforted that so many people care. Please know that we are not financially falling into a hole.  We are maintaining quite well considering neither of us are working.  God is so good. I know that there are people out there a lot worse off financially.  

 However, medical bills and traveling to Duke are a financial burden and I am willing to accept help knowing that each stress in our lives builds up.  I am under more stress then I have ever been.  I feel it constantly and I feel it physically.  Its the craziest thing when you sit back and think about stress and the physical and emotional effects it has.  Its really amazing how God created us, but not pleasant to go through.  With this fundraiser, I hope to cover the next $3000 that is coming up in October, and I would also love to spend some quality time with my family on a small vacation to get away from it all and just live, love and laugh.  With his appointments, we are unable to leave for more than 5 days at a time, and it is almost impossible to actually plan anything with the uncertainty that we are facing.  But its my hope to do something out of the house with the family this summer.

I am officially taking (at least) the summer off from photography.  Scheduling sessions and managing the logistics of Mike and the kids during sessions just got to be too much.  I’m under too much stress and something had to go.  I’ve even started to sell off some of my photography stuff.  I’m keeping my main gear and enough of my backgrounds and props to be able to go back to business if I want to, but am decluttering and bringing some cash in at the same time to go towards the family.  There was a time a couple of years ago when photography was my number one passion and priority.  I knew that I put photography before everything.  I will admit, I realized at one point about two years ago that if God asked me to give up photography, I didn’t think I’d be able to do it.  What a change of heart I have had.  God and my family come first.  I never would have thought that I would sit in the studio and look around and think “Its all just stuff.  It can stay or go.  If I have to give it up, its really ok.”  

So for now, I’ve let it go as a business.  I don’t know what the future will hold for my photography, and I’m ok with that.