Ramblings

This post is long overdue.  Can't believe I haven't posted since June!!

A quick catch up.  Summer was good for the whole family.  We always enjoy taking the summer "off" and just hanging out at my parents place down the Cape.

And then it was back to reality when we came home.  In September we had a door put on "Tim's room" to continue to try to find a way to deal with the ever present leg pounding.  Tim had his MRI and follow-up with Dr. Plotkin in September as well.  There was some new growth in an area he hadn't had before but they decided to watch it at this point and re-check it in January.  The biggest recommendation that came out of the appointment was to continue to look for a day program for Tim both for more stimulation for him as well as for respite for me.

In October Tim went to visit his parents in Florida for two weeks.  I spent some of that time in pursuit of a day program for Tim.  It has been really difficult trying to find a program close to us that will spend time working with him instead of more of just a daycare option.  I spoke to Whittier Rehab in Westboro and they informed me that they do not currently have a program but are hoping to start one in the future.  I asked if it was possible to start the program with just Tim and they said they would look into it.  Finally some progress! They said that until such time as they get it up and running, he could come on an outpatient basis for services.  So I'm working on that now - getting prescriptions for speech, OT, and PT services.  Hoping to start soon.

I pretty well feel like my emotions are on a crazy rollercoaster.  I try so hard to always "look on the bright side" but sometimes I sink back into the "this is so unfair" frame of mind.  Last night my car broke down and had to be towed.  Not something that should push you over the edge but when you're living as close to it as I am, it doesn't take much.  Having to figure out rides for the kids, appointments for Tim and I, and just the need to run out and get a gallon of milk becomes a daunting task.  People are wonderful and everyone offers to help all of the time but I think I've discovered that I really hate feeling needy.  I just don't want to be seen that way.  As much as I know people are always willing to help, I just feel like a pain in the ass.

So once I knew it could be several days of not having a car, after almost giving into the tears that I knew were coming, I decided to rent a car.  Not an expense I needed on top of the expense to fix the car, but to me a better alternative to having to ask for help yet again.  I was feeling pretty frustrated about it when I decided to take one more look around the house for a key to my in laws so I could go and borrow one of their cars.  Lo and behold I found it and canceled the car reservation.  Feeling a little better, I found a ride from one of the best friends a girl can ask for, Laura Catlin, and we went to Norfolk to get the car.

This should have been the end of feeling bad for myself except I got back home and Emma noticed there were no plates on the car.  A call to my father in law confirmed that the car is not currently registered and I would need to go back to Norfolk to get the other car.  So there I found myself crying in the car on the way to Norfolk and the way back with the correct car.

And here I am still in need of a giant hug and a shoulder to cry on but once again not wanting to ask for help. Though I guess to some extent that's exactly what I'm doing.  Why do even the normal things in life have to feel so hard sometimes?!

A Tough Month

I've said it before....I can go long periods of time feeling ok about things and then WHAM! everything gets tough to face again.  Nothing has changed healthwise for Tim.  We continue to plug along trying to find the right medications to help with his behaviors.  But here I am feeling helpless, frustrated, and back to questioning "Why me?"

I think it's partially the month of June.  We "celebrated" our anniversary last week.  For me that's a really tough day to "celebrate."  You're supposed to be able to look back at that day you got married and all of the wonderful things you've shared since.  All I can seem to see on that day now is everything that I lost.  It's not your typical wedding anniversary.  Yes, we went out to dinner but it wasn't a romantic night out.  Any trip out to a restaurant is hard now as sitting still for any length of time or holding a conversation are not things that Tim is able to do well anymore.  We got lots of anniversary wishes and reflections of how beautiful our wedding day was and I just found as the day went on I just felt more and more sad. 

And then Father's day rolls around.  This one is tougher for me to watch the kids go through.  I don't think that they find that particular day any harder than any other but both of them have talked about how their daddy isn't really a father in the way other kids have a father.  He can't help with homework, or fix things that need fixing, he doesn't follow when they try to talk to him about something happening with their friends, and let's face it when they are home alone with him they are the ones in charge.  And since his temper isn't always the best, they have to be very careful about what they say and do around him.  Unfortunately he also doesn't like to be touched so hugs and kisses are pretty much out too.

Now comes my birthday.  In the days before the brain tumor symptoms even started, Tim was so invested in surprising me with something on my birthday.  His generosity always amazed me and it was so nice to be surprised.  Now that he can't drive, the kids are in charge of trying to find me something on Amazon and he doesn't really have any part in it.  I definitely miss those days!

I have to give a shout out to my most amazing friend, Laura Catlin, who is giving me exactly what I want for my birthday this year - time with friends.  Time to feel as normal as possible, hopefully time to laugh.  I honestly don't think I could make it through all of this without times like that. 

It has been a rough couple of weeks and for someone who's not usually a crier, there certainly have been a lot of tears.  If anyone is available for a hug, I could sure use a few! :)

A Way Overdue Update

Wow!  I really haven't posted since April?  Where has the time gone!?

We finished up eight weeks of cognitive rehabilitation therapy with a speech therapist a couple of weeks ago.  Tim is now more independently going through a morning routine without so many reminders from me to eat breakfast, take pills, shower, etc.  Still not perfect but definitely better.  He is also helping out with more chores around the house although some days are still better than others.  Even though the sessions have ended, Tim is still able to participate in a beta version of therapy on the ipad that his speech therapist can check in on and make changes to without having to see us.  I think it has been really good for him.

Unfortunately we are still on the medication rollercoaster with no real change to the pounding on the leg.  The beta blocker didn't make any change and was lowering his heart rate too much to continue with it.  The next med, Risperdal, sent him to the emergency room with a stiff neck so that one was abandoned.  He's now been on Tegratol for two weeks.  We haven't seen any changes in the leg pounding but there have been other positive changes.  He isn't losing his temper as easily which means we won't be having to tiptoe around him all of the time.  And his fidgety behaviors (rocking his body back and forth mainly) are definitely decreasing.  Nice to see something positive!

In an effort to try to figure out how to live with the leg hitting, we made some big changes to the house.  It became important to find a way to give Tim his own space so we completely flip flopped the playroom and living room.  The "new" living room the girls have started calling the DR (daddy's room) and we are going to have a door put on it as well.  It's a space where he can hang out and watch tv and no one will bother him and we will be able to get a much needed break from the constant leg pounding.  So far it seems to be working out well.  The kids are also enjoying their new playroom after I made a trip to Ikea for new furniture to hold toys and things as well as putting down a new cushy carpet.  All in all some good changes.

On my part, things have been going better for me.  I seem to be seeing friends more than I was which is always the best therapy for me!  I also started knitting with a group of friends (and relatives) and never knew that I would love that so much!  We have done really well with sticking to meeting every other week and its so great to have that to look forward to.  We had a multi family cookout at our house this past weekend and it's times like that that give me a feeling of a little normalcy.  Now I just have to make sure things like that keep happening!

Feelings

I don't want to make it sound as though I spend all of my time thoroughly depressed, so please don't take this post that way.  It's just that I was reading a book before bed last night and came across this quote that I feel could sometimes describe me:

"The worst type of crying wasn't the kind everyone could see - the wailing on street corners, the tearing at clothes. No, the worst kind happened when your soul wept and no matter what you did, there was no way to comfort it.  A section withered and became a scar on the part of your soul that survived."

I'm too embarrassed to provide the book and author as when I downloaded this particular book on my kindle, I did not notice that it said it was a Harlequin teen book.  It was part of the kindle daily deals and the plot sounded interesting.  It's actually a pretty darn good book but I don't think I'll put it out there right now.

I'm not much of a crier.  I rarely show the emotions that I am feeling, in fact I probably work extra hard to cover them up- awkwardly laughing after talking about anything that truly upsets me.  Even when I am feeling sad and crying on the inside, chances are you will ask me how I'm doing and my answer will be something neutral like "hanging in there" or "doing ok."  I won't out and out lie and say everything is great but there's something really uncomfortable about pouring it all out when someone asks how you are.  I don't think that's what most people are really looking for anyway!

This quote also made me think about how differently people react to difficult situations.  Abby and I tend to be more stoic and in control when a crisis happens.  Whereas Emma will scream, cry out, and lash out at any one around her.  For the longest time, I've thought Emma is the one who is reacting somewhat inappropriately but now realize that holding it all in isn't really all that healthy either.  Maybe that's why my blood pressure is high?

I know I'm not going to change and start pouring my heart out to everyone who asks but maybe just writing about it is all I need right now to feel even slightly better and avoid that feeling of awkwardness that comes with the face to face talks.

Frustration Mounting

I'll start with the good news.  The MRI showed that there has been no new growth.  I guess up until the last year or so, that was exactly what we hoped for every time we went in - a stable MRI.  Now, unfortunately (and even the neurooncologist felt this way), a stable MRI means that there is not something going on that we can treat.  I continue to try to feel blessed that nothing new is going on in there but it would be nice if there was a way to improve Tim's overall quality of life.

It has been really difficult around our house of late.  It seemed to get to Abby first and I felt badly that she was going through such an angry stage and that there was nothing I could do about it.  Now I realize it's just the frustration with all we can't change as I find myself going through quite the angry stage now as well.  Tim's self-hitting and self-talking has gotten so out of control that the only way to get a break from it is to go off to another room.  Which means that he has the main living area of our house (family room and kitchen) to himself most of the time.  As I sit here in my bedroom to once again get away from the self-hitting noise, I can still hear it downstairs and it literally is like nails on a chalkboard for me.

For a long time, I was able to tell myself "It's not his fault.  He never would have wanted to be this way."  Lately that doesn't seem to be working.  It's like there's only so much a person can take and then you start going over the edge!

We have been driving into MGH once a week for speech and language services for a couple of weeks now.  The new organizational systems we have been putting in place do seem to be helping with keeping him more independent and productive so that has at least been a positive.    We are utilizing an organizer with a to-do list as well as ipad alarms as reminders.  Unfortunately his first instinct is still to just turn the alarm off and continue to watch tv, but with a verbal reminder, he will get up and do his job.

On Monday, we went in to see the neuropsychiatrist.  He would like to try a beta blocker with Tim that is supposed to help with restlessness and impulsive behaviors.  He needs to check with Tim's heart doctor first to be sure it is a safe option for him.  I can't even start to get my hopes up at this point that it will help with these behaviors but I truly feel like I am losing my mind!  

It certainly isn't helping any that I was just about over one cold and managed to catch another one.  Feeling pretty lousy healthwise at the moment.  But also feeling a lack of laughter and fun in my life.  It seems like I'm just plodding through each day always waiting for something good to happen.  I don't know what I would do without the kids here to bring some sunshine into my life!  I just wish they didn't have to go through all of this!

Stress

So life has been crazy and I haven't had time to post in the last several weeks.  Our 13-year old, Emma, starred in Annie two weekends ago and she was fabulous!  After a week of late rehearsals and 3 shows over that weekend, we were both exhausted but also a little sad that it was over.

Tim managed to make it to all three shows but he also was completely exhausted by the end of the weekend.  I thought that my exhaustion last week was due to the craziness of the play and tech week, but now that it has continued into this week, I'm thinking it's more likely stress.

We have an MRI tomorrow and it has been weighing heavily on my mind for weeks now.  I had hoped after getting back from Florida that things would start to settle down once Tim was back into home routines and in his own territory.  Unfortunately things have not gotten better, they have actually gotten worse.  I guess all of my hopes I was pinning on Keppra being the cause of his behaviors have gone down the drain.  I really did think we were seeing positive changes before going away, even the kids had noticed he was doing better.

Now, however, the leg hitting is at an all time high.  He has even managed to find a way to do it while walking, awkwardly lifting his leg to hit it with his fist as he walks.  Other ritualistic behaviors have also increased to the point where he can barely sit still for any length of time anymore.

Of even more concern, the excessive talking that we were seeing before vacation has come to a point where a large amount of the time we are unable to understand what he is saying because he talks so fast.  This one worries me a lot as I have to wonder if something is invading the speech area of his brain now too.  Oh the dread of the upcoming MRI!

So, I don't know if it is all of this stress or that I'm fighting some kind of cold or virus, but I just don't have any motivation to do anything!  I can't seem to get myself to keep up with cleaning, I don't feel like cooking, and nothing is getting done around here!  I would probably happily spend the day watching tv with Tim in the family room except the leg hitting and excessive talking always end up driving me from the room.

I've found myself mostly hanging out in my bedroom.  It has become my sanctuary. It's the one room the kids don't drag their mess into, I can barely hear the leg hitting and talking from there, and the remote is mine!  I'm sometimes concerned that I've become this person who is hanging out in my bedroom all of the time but I guess I'll worry more when I start taking meals and visitors in there!  For now, I hope that this is just about getting the rest I must need right now while trying to escape from the stresses that are all around me.

I guess that's all for now.  I will update after we get the results from the MRI.  Wish I was feeling better about it!

Progress Lost

So, we went away to Florida to visit my in-laws for just over a week.  Overall we had a fabulous vacation.  I had a chance to relax and even got to read 3 books while I was away (usually takes me a month to finish one!).  The girls and I enjoyed relaxing days by the pool with my mother-in-law while Tim enjoyed catching up with his dad.  We spent a wonderful day at the Palm Beach Zoo, went out for some great dinners, and just really appreciated the time together as a family.

The reason I say "overall" is because there was some backtracking as far as the progress I was seeing with Tim before going on vacation.  The Tuesday before we left, we stopped his Seroquel as this med was prescribed to calm him down back when he went on Lamictal (the med that made him aggressive).  Once Keppra was out of his system, and we were seeing that he was much calmer, his neuropsychiatrist said we could try taking him off.  At home, we hadn't seen any temper flares for quite some time. By Friday in Florida, we were seeing some temper flares so I put him back on the Seroquel.  We still continued to see some temper flares while we were there and the day of traveling home was really stressful.

We have always loved to travel and I am one of those rare people who has never minded airports or traveling by airplane.  I don't think I can really say that anymore after that day or even the day that we traveled down.  In the past, delays in flights were never that big of a deal.  We always bring plenty to do so a little extra time waiting shouldn't be a big deal.  Well, when you have a husband who quite literally cannot sit still and you have the constant worry about him either completely wandering off or walking into places he shouldn't be, it makes those delays (and even just the normal time you sit in an airport) highly stressful!  On the trip down, it wasn't as bad as he was still pretty easy going about it.  We were able to just ask him to stay with us or give him some boundaries to stay within.  But the trip back, any time we asked him to stay with us and not wander off, his temper would flare and he would end up yelling in my face as people stared at us.  The worst of this being in the security line.  I was a little afraid we were going to be kicked out of the airport!

I was hoping that once we got home and back into familiar territory, he would calm down and we'd get back to where we were before traveling.  However, he continued to stay tense and on edge.  We arrived home on Friday.  On Sunday, Tim myself and my mom went out to dinner (both of the girls were at friends' houses).  It was such an incredibly tense experience!  He couldn't sit still the whole dinner, shaking and fidgeting constantly.  Anything we talked about, he would end up joining in the conversation with a raised voice and intense look on his face.  He himself said he couldn't calm down.  By the end of dinner I found that both my mother and I were talking in monotone voices if we talked at all.  It was so hard to see him like that!

I called the neuropsychiatrist first thing Monday morning.  He had me increase Tim's seroquel and so far things seem to have calmed down some as far as the temper flares.  It also seems to have helped some with the leg hitting which had decreased significantly before going away but then he did quite a bit of it while on vacation.  Now with the increased seroquel, it does seem to be calming down again.  Fingers crossed!

And just because things never seem to calm down as far as new symptoms are concerned....about a week before going away, I started noticing that he is talking A LOT.  And talking really quickly, almost in a mumble.  Often I can't even quite make out what he is saying.  It also doesn't seem to matter if anyone is in the room or even listening.  He just can't stop talking.  This unfortunately only seems to be increasing both over our vacation and since coming home.  Not sure what's going on there but we go back to the neuropsychiatrist next week.  Hoping he can offer some insight.  Most of the time it's not a big deal but it's hard when you're trying to watch something on tv or trying to concentrate on something and he just can't stop talking.  He even consciously tries not to talk and ends up sending out a barrage of "I don't know why I'm talking. I just can't stop.  I wish I could just stop talking. I don't know why I do it."  I can't even imagine what it's like for him not being able to control something as simple as talking.  Just one more thing this nasty disease has taken over for him.  Makes me so angry!

With all of the changes in the last few weeks, it of course starts that little worry that's always present in the back of my head about what the next MRI will show.  I'm truly hoping that it was just the stress of traveling and being out of his element that caused the backtracking.  Now that we're back to routine, hopefully things will simmer down at least to where they were before leaving.  Do I dare hope for better?

Progress?

Haven't written in a while.  Things have been pretty busy.  And as I suspected, spending time with friends and family is just the medicine I need.  I have been feeling much better and I truly believe that is in direct correlation to having spent time with friends and family.  It started with an overnight at my cousin's house.  Left the kids and Tim home alone which I was a little apprehensive about but all went well and I had a great time.

Then my mom came out for three days and we scrapbooked during the days with friends joining us twice as well.  Out of that came a standing once a week scrapbooking day which we already stuck with this week.  So good to have something to look forward to!

This past weekend, we went to visit my brother and family in New Hampshire and my cousin and her son came along as well.  My oldest daughter, Emma, watched all of the kids while the adults went out.  We had such a great time!  Tim kept commenting on how much he was enjoying himself while we were out.  He really seemed a lot like his old self.

I have said that this kind of time is what gets me through and I really do feel fortified now.  I just need to make sure it keeps happening!

I have been trying really hard to reserve judgement on whether the weaning process with the Keppra is making a difference.  I have vaguely felt that the leg pounding has decreased (though certainly not stopped!). Being a behavior analyst, I should have taken some data before so I would have something concrete to base it on.  But as usual for behavior analysts, I don't follow through when it comes to my own family!

I definitely have been seeing some changes however in personality, motivation, and multi-step task completion.  As I said earlier, that night we went out in New Hampshire he was "fitting in" more than he has in a while.  He also sat with us and didn't try to wander off.  He has definitely been more talkative and participates more in conversations.  And other friends have noticed it as well which is my true gauge as I'm with him every day so I don't always trust my opinions.

And then tonight....it's not going to sound like much but it was huge for me!  We went out to do the trash.  Typically I have to verbally walk him through every step of how to sort the recyclables and then go back and correct what he still hasn't gotten right.  He also will often try to put more than one barrel out for the trash even though we are only allowed to put one out so I will have to go out and take the bags out of the second barrel and pile them on top of the ones in the first barrel.  Well tonight, he collected trash throughout the house and carried the recyclables out with me. When we got outside, he put the trash into the one barrel and pulled it out to the street.  We started to sort the recyclables and I was prepared to remind him how but he just did it all on his own.  I even stopped helping and just watched amazed at what I was seeing!

Probably should have left it at that but when we came in, I asked him to help me empty the dishwasher and he jumped right in!  Like I said, small potatoes in most houses but it has been years since he was able to complete these tasks without a verbal walkthrough!

I'm no longer talking myself out of the changes I'm seeing.  They are there!  And he's only got this week left on the smaller dose of Keppra and then he's done with it.  Can't wait to see what else we might see!

Those Nasty What-if's

Before I launch into yet another blog full of my depressing secret thoughts, I just want to say that the reason I haven't blogged in a week is because I spent a wonderful weekend in New York with my mom and my girls.  It was some much needed girl time and we had such a fantastic time.  We went to see Annie because Emma will be starring in her upcoming middle school play with the lead role.  It was so great to see her meeting the actress who played Annie in the Broadway show!  One of those moments you never forget!  I really thought I'd come back feeling refreshed but instead the what-if's set in just a few days later.

Aside from the biggest what-if....What if this never happened? What would our lives look like now?, there's so many small what-if's every day.  Sometimes I feel consumed by them.  I find I do well for long periods of time and then just have a few days where I crash.  These past few days my jaw has been killing me from clenching and grinding and I feel just tense all over.  I know this too shall pass but while it's happening, there's all of those what-if's.

What if things don't get any better once the Keppra is out of his system?  I know we're only day four into the weaning process but I'm getting scared that I've put far too much hope into things changing.  Especially with the fist pounding on the leg.  What if it's still just as incessant as it is now?  How will I handle that?

What if the application I just sent into MassHealth doesn't get approved?  Or doesn't get approved before our current health insurance stops?

What if I didn't do everything correctly setting Tim up with Medicare, a drug plan, and supplementary insurance?

What if Tim's next MRI shows that all of this concern over med changes is trivial and I should have been concerned over much bigger things?

What if Tim has another seizure?  What if Keppra is the only anti seizure drug that works for him?

And then there's the big what-if's that plague me when I try to think long term.  What if when I eventually return to the working force, I'm too old to start a new career?  I would have thought at forty years old I would be established in my career and wouldn't have to be thinking this way.  But because of the circumstances of my recent life, I don't see myself going back to a field where there's any caregiving involved.  I believe I'll be ready for something totally new.  But how do I go about this and will they even want me?

What if I don't know what to do with my life after all of this?  Caring for Tim and supporting my girls has become my full time life.  What am I without that?  I don't do anything else!  Who am I anymore?

If this case of the downers is anything like the other ones I've been through, I know in a day or two I won't be feeling so defeated.  I'm just ready for a period of time where there aren't any big (or even small) decisions to make.  It seems every time one thing gets figured out, along comes the next.  I'd just like some time to stop, relax, and enjoy.  Now if I can only figure out what I enjoy anymore!

This is not how it was supposed to be

That's the phrase that runs through my head on and off, especially on the days that I'm not coping as well.  Most days I try to just go with the flow and if not enjoy, at least face the new normal.  But sometimes those feelings of "this is not how it was supposed to be" still creep up on me.

Seventeen and a half years ago, I married the perfect man.  I always wish the people who met Tim "after" could see what he used to be like.  He was witty, fun, gentle, generous, social, extremely orgainized, helpful, and a great conversationalist.  When we used to go to a party where we didn't know very many people, Tim would spend the whole ride home telling me all about the people he met - where they worked, what their hobbies were, what they liked and disliked.  Even if I talked to those same people, I never would have had all of the information he had even if I spent a week with them!  He had this way of making people feel like he was truly interested in everything they had to say even if it wasn't something he would normally be interested in. 

Days like today I find myself missing the "old Tim" so much!  Not that he did anything wrong, mind you, he was just as polite and easy going as ever but sometimes I just wish I could have even a day of what it used to be like.  It started off today with getting him up early so we could head out a little early (due to the snow) for his appointment with the neuropsychiatrist at MGH.  I don't know if it was the early hour or just one of those days for him but he required constant verbal prompting to get through showering, shaving, putting on appropriately warm clothes for the day, and shoveling the deck off.  Luckily the roads weren't as bad as expected and we got there without too much trouble.

When we got back home, I asked him if he wanted to come out to UPS with me to mail Emma's tablet she got for Christmas back to the manufacturer due to defects anad then on to BJ's for some shopping.  He likes to get out so he said yes he'd like to come.  While I stood at the counter filling out the paperwork for shipping the tablet, Tim proceeded to wander all over the UPS.  The man waiting on me kept looking over my shoulder at him with an expression of "what is with this guy?" written all over his face.  I'm always uncomfortable in these situations as I don't just want to blurt out "he has brain cancer, all right?"  I finally sent him out to the car and told him I'd meet him there.  Imagine my surprise when I came out and he had pulled the car up in front of the store!  He's not supposed to be driving!

Next was BJ's.  Tim was pushing the carriage while I was getting the things on our list.  Quite frequently I would turn around from the shelf with a heavy item only to find he was already clear down the other end of the aisle heading into the next aisle.  I finally took over with the carriage and had him grab the things we needed.  While I checked out at the register, Tim once again wandered around the front part of the store.  He's just completely unable to just stand and wait with me.  And today it was getting to me!

Time to load the car.  I opened the trunk and Tim says "you got this?" I patiently said "no, I could use your help putting things in the car."  He stood there for the longest time holding a few items from the carriage while I loaded things into the trunk.  He finally said "Should I load some things into the backseat."  To which I answered "I think it would be easier if we just put them all in the trunk then we'll only have one place to unload from."  He replied "exactly" and immediately began to load into the backseat.  I tried to reiterate what I had just said but he just continued what he was doing.  I find this fairly often now.  He'll ask me how I want him to do something and then proceed to do it another way.

I sincerely hope that it doesn't just sound like I'm venting.  It just amazes me sometimes how different my life is now.  And that's when the phrase enters "this is not how it was supposed to be."  Maybe it's the fact that I've spent the last week trying to figure out medicare enrollment and medigap insurance versus medicare advantage.  And add to that trying to figure out the application for Mass Health for me and the girls and my brain is about to explode!

People often ask what they can do for me and I'm never able to come up with a tangible thing that I need done.  Even when it's offered I have a lot of trouble taking the help that's offered.  I recently realized thanks to my very special cousin Lisa Santospago, that it's not exactly help that I need.  It's time to laugh, it's time to feel "normal" and just enjoy some real conversation.  Even though she lives close to an hour away, she has been making it a priority to get together with me and just "hang out" and every time I end up feeling revived and ready to face things again.  She's come out to do something with me almost every weekend and we joke the weekends we don't do something that we're missing each other.  Same thing when I get together with friends, the next day I feel so much better!  A lot of times people say they don't know what to say or do and honestly I don't need to talk about what's going on at home.  Unless they want to hear about it, I don't really need to talk about it.  What I need is to just have that time to let go, laugh, and feel normal. 

Stopping work was definitely the right thing to do for me and my family but I don't think I anticipated the loneliness that I would feel without that community of women friends that I had.  And it wasn't like we talked every day about my home life but we laughed and shared stories of our kids, and when I was having a bad day there were plenty of hugs to go around.  Through no fault of his own, Tim is unable to recognize at all if I'm feeling sad or just plain having a bad day.  Even if I tell him outright, there's still not really a reaction.  It's hard not to have "that person."  The one you can share just a look with and they know exactly what you're thinking.  I'm still trying to remain hopeful that when we start the Keppra weaning process next week that I will see at least some changes but days like today are just plain hard.

The Trials and Tribulations of Med Changes

I spent my career before Tim got sick working with children on the autism spectrum.  First as a paraprofessional and later as an ABA Therapist.  I earned my certification as a Board Certified assistant Behavior Analyst during my third year as an ABA Therapist.  I went through med changes with many children over the years.  And yes, they were hard.  But I was only with them six hours a day.  Assuredly their families were the ones who went through the bulk of the behaviors that invariably occur while changing meds.  Now I have such a greater appreciation for what those families faced.

For years now I've blamed Tim's ever-increasing frustrating behaviors on the effects of the tumor and scar tissue that has invaded his brain.  Granted it may still be what is going on.  However, once he started seeing a neuropsychiatrist this past November, they strongly urged us to get Tim off of Keppra as it is known to cause behavior issues and they couldn't adequately work on changing his behaviors without knowing if Keppra was the cause of them.  I was so frustrated with myself at this point as I knew from kids that I had worked with in the past that Keppra does this, but had just completely overlooked it with Tim.  I immediately got on the Internet and started reading up on what kind of side effects people saw from this medication.

Over the years, behaviors have cropped up with Tim.  Some started way back and some have been more recent but many of them seem to fit with what is reported for this medication.  As I said in my first post, Tim's biggest presenting symptom was anger.  So when we started to see these rages that would take place here and there, we just assumed it was again the brain damage caused by the tumor and scar tissue.  It isn't like before where he was angry all the time, rather he is unable to control himself sometimes if he gets overly excited or the kids are loud, or he's startled in some way.  According to many reports, Keppra causes these rages which have even been named "Kepprage." 

Another behavior we have been facing with Tim, is his constant restlessness.  It presents in a couple of forms, one of them being more concerning and one just plain annoying.  The concerning one is that he wanders all of the time.  Last fourth of July, he wandered away from us in Boston and we couldn't find him for over 3 hours - it was terrifying!  The other behavior is constant wiggling/shaking and this need to forcefully hit his leg with his fist all of the time.  It drives us all crazy!  And he seems completely incapable of controlling it.  Turns out Keppra can cause restlessness and tic-like behaviors. 

And lastly, people who have been Keppra for a long time and then come off of it report a feeling of coming out of a fog.  I now have to wonder if maybe he'll be more with it if he doesn't have Keppra in his system.  Again, all of these things can still be directly related to the brain damage but we'll never know without a change in meds.

So, after that first neuropsych appointment, a med change was recommended.  He was going to titrate up on a new med, Lamictal, which was known to be a mood stabilizer as well as an anti-seizure med.  And once he was at full dose, he would slowly wean off of the Keppra.  Sounded like a great plan until about three days into it when he suddenly didn't have small rages anymore but became borderline violent.  Lamictal was immediately stopped and after about a week or so, he returned to how he was before Lamictal.

We waited a couple of weeks to see his neurooncologist and at that visit it was decided to try weaning him off seizure meds completely since he had never actually had a seizure.  Things were going great for a week and a half as he went down slowly on the Keppra.  He was hitting his leg less, he was able to sit for longer periods of time, and his patience was far better in regards to noises and activity.  I was feeling hopeful for the first time in a while.  And then, on his birthday no less, he had his first seizure.  It was terrifying for the kids but somehow I remained incredibly calm through the whole thing.  Not sure where that came from!

Anyhow, during our trip to the local ER, they consulted with his doctors at MGH and decided to not only bump his Keppra back up but also to start a new med, Vimpat.  Again, he is going to slowly titrate up on the Vimpat and once he's at full dose, he will wean off of the Keppra.  It was beyond shocking when I went to pick the Vimpat up at the pharmacy and found out it is $100 a month but if it works, then we will make it work financially.  This week he goes up to the full dose and next week he will begin weaning off of Keppra.  I can't wait to see if some or all of his behaviors improve.  The Vimpat so far has given him some issues with short term memory - he will ask questions over and over again that we have just answered.  But I'll take that over the other behaviors any day!  He's also pretty tired but since anti-seizure meds are known for that and he's on two of them right now, that's understandable.

I try to tell myself not to get my hopes up but I truly am so hopeful about seeing positive changes once the Keppra is completely out of his system.  I really hope I am not thoroughly disappointed!

A little background

I have been thinking about doing this blog for quite some time now.  I'm not ambitious enough to write a book but have wanted to share my experiences of being a caregiver to my husband who has brain cancer in some way.

I also have never blogged before so bear with me as I try to figure it all out.  I'm not sure where to start so I guess I'll start at the beginning for now though I am only going to tell the background of how we ended up here.  After that I plan on telling more the daily/weekly stories of what is going on in our lives with maybe some references to things we've already been through.

My name is Anna and I am 40 years old.  Is this where I thought I'd be at 40?  Absolutely not!  Hence the reason for the title of my blog. 

My husband, Tim, was diagnosed with Grade 3 anaplastic oligoastrocytoma four years ago.  New Year's Eve 2008 to be exact.  He was 38 at the time.  We have two daughters who are now 10 and 13.  Up until about a year before his diagnosis, we were living a perfectly normal if not better than normal life.  Tim was a perfect husband and father.  Extremely gentle, always involved with the kids, he cooked & cleaned, he grocery shopped, he paid all the bills, and was always up for hanging out with our friends.  Slowly over that year before diagnosis, he was doing less and less around the house, didn't really want to see any of our friends, and was angry at myself and the girls (as well as extended family) most of the time.  He tried to pick fights with me constantly and seemed to be more content if he was able to get a rise out of me. 

We (his parents, my parents, and myself) kept blaming it on his work.  He did complain a lot about work being stressful and about fighting with his boss so we thought this was what was going on.  Eventually by the end of that year, I had a long list of things that just "weren't right."  These included, but weren't limited to, the anger already mentioned, headaches, very low tolerance to noise, being unwilling to help with anything anymore, and short term memory issues.  We finally went to see his PCP where I shared this list.  I was somewhat convinced it had something to do with his cholesterol meds as I had found some anecdotal evidence to support this on the internet.  His doctor didn't think that was it but agreed to trial off of it to see.  He also decided to send Tim for a cat scan "just to rule anything else out."

That appointment occurred on Tim's birthday (December 30th, 2008).  Because his anger and yelling had gotten so bad at that point, right after the appointment, I went down the Cape to my parents house to join my children who were already there.  We just needed a break from him for a while so planned on staying for Christmas break and then going from there.  Tim went for his cat scan on the 31st by himself.  I never expected in a million years the call I got that day from him saying they were transporting him to Mass General because they had found a tumor.

My dad and I immediately got in the car and drove to Mass General - not an easy feat considering it was the middle of a blizzard!  It took us three and a half hours to get there!  He was sent for an MRI which confirmed the tumor.  Within days, he went in for his first of three craniotomies.  The biopsy from that told us that it was cancer.

Imagine going from feeling like you're on the verge of divorce due to all of the unexplained anger and yelling, and now you find out your husband has cancer and you have to drop all of those unresolved emotions and step up to the plate to take charge of his care.  It has been a rollercoaster these last four years.  I've been home with him full time for about a year now and life is never just even keeled anymore.

I'm going to stop here for now but will try to blog at least once weekly about what we are going through at the time and hopefully fill in some of the gaps over time as well.