I didn’t realize…

It had been so long since my last post...

The family and I are doing well, just living day by day. The boys will be 5 on Feb 1...I'm still trying to wrap my head around it. It's amazing to watch them grow and learn; I just wish it would slow down. They're getting to be big boys, and they're acting like it

So far so good regarding the MRI scans...just some scar tissue moving around. And good news, instead of every three months between scans, I only have to go every four months. Doesn't sound like much, but progress is progress.

I am still experiencing some small seizures or episodes. I'm completely coherent and I get that feeling across my brain. And then I can't talk. I can see the words, saying them in my head. But that connection between my brain and mouth gets interrupted for 15-20 seconds.

I still think about it all the time, wondering what's going in my head. Again, how can I not. Every time I feel funny or odd, every time I get a headache, I wonder if it's coming back. I still keep it to myself, most of the time. Whatever...I'll deal with whatever comes my way like I always do

I had a HUGE tear in my rotator cuff and had it surgically repaired in mid-August. Talk about painful. I was in a permanent sling for six weeks. It's no fun sleeping in a recliner for that long, constantly changing out ice packs and trying to get comfortable. And then the PT. PT was hell for 8-10 weeks (sorry Moe) and I still have two more months to go. My advice to you, don't ever have shoulder surgery unless it's absolutely necessary...

I'm not sure if this is a good thing, but I finally got my taste buds back for beer. Took about a year, but damn it feels good to drink a cold banquet beer.

I hope you all are happy and want to wish you and yours a very Merry Christmas! I hope next year you continue live in the moment and cherish each day.

Be well...TB

ugh…

Hey all

Not really sure where to start... Been up since 4-30, in and out of sleep. I've been watching sports center, kind of. I've had 4 seizures in the last 5 weeks, including one yesterday.

Every time I have a seizure I think the tumor is back. How can I not? So you can imagine where my mind is. I can't get out of my own head. What if it is back? What's next if it is? Is this the beginning of the end (hell no!)? Lots of questions with no answers...

But I don't even know if in fact the tumor IS back. I don't know if it's my medications, if I'm not getting enough sleep, combination of the two, something else. My next MRI is January 13 or 15; MRI in the morning, results of the MRI in the afternoon. I am looking forward to some Zio's pizza though!

The uncertainty is what kills me. And I hate that I have no control of the uncertainty...hate it.

The boys just got up; Timmy came right over and gave me a hug

Brody was worried about the basement door being open and the fresh air coming in and the hot air going out

(cont'd as I took 3 hr nap )

The boys and Karla are what I try to focus on. The boys will be 4 on February 1. Where has time gone? They are happy kids though, and are at an age where we can do so much more with them. Karla has SO much on her plate. She drives the boys to school, goes to work for 3-4 hours, picks the boys up, drives them to daycare, drives home, logs into work, drives back to pick the boys at day care and brings them home. She drives nearly50 miles a day. And it wears on her. And I hate it.

She's still my rock though. I truly don't know what I'd do without her...

I just can't get out of my head. I think about it constantly. And I keep it to myself. That's probably the worst thing I can do. But I do so to try and protect Karla, my parents, family. I feel like it's the right thing to do. To not add stress and sadness to an already bad situation.

I try like hell to live by the following quote from Abe Lincoln:

"Most folks are as happy as they make up their minds to be."

I believe attitude is everything. I know right now my attitude is kinda shitty. It'll improve, this I know. Hell, venting as I type this blog post is helping. Thanks for reading.

I hope you all have a wonderful holiday season. Enjoy your time spent with family and friends. And be grateful for what you have. Have a very Merry Christmas and an excellent New Year!!!

Be well...TB

Howdy…

Been a while since Karla and I posted anything...wonder how many of you are still reading this

Karla and the boys are doing great! The boys started pre-school August 23...they seem to love it! But every time Karla or I ask them about it they say "I don't want to talk about it" Who knows where they get that from. They've adjusted well to their new schedule and are making lots of new friends!

Karla is adjusting to her new schedule as well; she takes the boys to school and goes to work in the morning. Then she picks the boys up after lunch, takes them to daycare, and works from home in the afternoon. We're really lucky her work allows her the flexibility we need to make it work.

All in all, things are going pretty well. I'm back at work PT...been averaging 28-34 hours a week for the past 6 weeks. It feels good to get back into the routine. And it feels even better to be back with my second family! My plan is to get back to full time this Monday!

As for my health, I'm feeling better than I did before the surgery! My last seizure was Aug 29, so I'm not driving yet...getting very impatient, but it is what it is. My next moment of truth (MRI) is October 13...can't believe it's right around the corner... On the bright side, I am looking forward to some Zio's though! I'll write another post after I get through the day...hopefully with good news

Hope you all have a great day!

Til next time...

TB

Been a while…

Hey All...hope this finds you well

I don't know where to start...anyone still reading this blog (or FB) knows my last MRI showed no re-growth of the tumor; promising results considering we're just shy of six months since my surgery. I'm staying level-headed about it...not to high, not to low.

I've had a few seizures over the the last couple-three months. They are getting shorter in length of time but the soreness is the same. I saw my neurologist after my MRI a couple of weeks ago; he put me on another drug (Lamictal?) in addition to the other two anti-seizure med's. I really think I/we are on the right track with this.

Just got back from Indian Rocks Florida on Monday. Karla and I took a MUCH needed vacation with her two sisters and their husbands (I'm an only child and this trip showed me what its like to have brothers and sisters...thank you for caring SO much, I love you guys). We rented a townhouse overlooking a bay and had a two block walk to the beach. We did a lot of nothing...no plans or agenda, just what we all needed. My parents kept the boys and I must say they came home pretty spoiled I guess that's what grandparents are for...Thanks Mom & Dad!

Things are looking up...it'll be October before I can drive and I'm already getting impatient. But oh well...things could always be worse.

That's all I've got for now...Take care and be well.

TB

Recent scan shows….

No re-growth thus far!!!

The Doctors say that as far as they can see there is no apparent re-growth or changes in the cavity where the tumor once was.  They are attributing his recent seizure activity to after-effects from receiving radiation therapy to the brain.  Travis is going to switch anti-seizure medications in hopes to become seizure free ....(for at least 3 months so he can DrIvE).

His next scan will be in three months....

Thanks again for all of your kindness as we continue the fight against cancer!

It’s a Crap Shoot…..

Medication changes are a Crap Shoot....

After the last blog post of Travis's seizure activity they increased his dose of his anti-seizure medication.  That increase made him SO TIRED it was hard for him to speak and/or stay awake....so....I called up to the Doctors and they decreased that medication and put him on an additional med.  The combination of these two meds should do the trick!

However, there are always side effects involved.  Travis has been having 'tremors'.  At first when he experienced these 'tremors' he thought it was the onset of a seizure.  His lips quiver, his hands shake and his over-all 'self' is just spacey.  After a few of these he realized that they were manageable.  .  . and they say the 'tremors'  CAN go away once his body gets used to the drug....(hence the Crap-Shoot).  I am also sad to report he had yet another seizure last night   which is yet another side effect when you switch medications.   So we/he are just trying to get this medication situation under-control.

What works for some people doesn't work the same for another....C-R-A-P  S-H-O-O-T!  (words of wisdom )

Have a Fabulous Holiday Weekend!!!  We are looking forward to time with friends, family and fireworks!

Karla

No Posts was a GOOD thing…

Many had been asking "why have you not posted in-forever?"  Well...to tell you the truth it is because all was well   Unless of course this were a daily blog about the trials and defeats of raising two three year olds (that would be a never-ending blog).

Any-hoots I am blogging today to report Travis had yet another scary seizure on Saturday morning (never on a weekday when I can call his Doctors).  This time I did not witness the entire seizure. I was in our family room with the boys letting Daddy sleep in (yes I am a wonderful wife) and all of a sudden I hear two large BANGS.  As many things went through my head as to WTF could have just happened, one of them was perhaps Travis fell ? (clumsy poop!) I listened for a minute to see if I could hear a cuss word or the floor squeak because then I would know he was okay....and when I heard nothing I went up to check things out and there he was at the foot of the bed on the floor super confused.  I ended up taking him to the ER due to the fact he was unable to talk to me again (like after surgery) he was very disoriented and kept doing awkward things like laying down, getting blankets on then getting up and going into the bathroom (but not going TO the bathroom), walking out and laying back down....and while all of this was going on I was trying to get him to tell me his name...where he was...my name...or What the FREAK he was doing???

I decided to call my sisters (Thanks Jodie and Abby) to come watch the boys because Travis's behavior post-seizure had never been this awkward and I needed to take him to the ER.   Half way to BryanLGH West Travis turns to me and says "I think I had a seizure"...."ReAlLy?" yA ThInK?    I was happy he began to recall the situation and he was able to speak again

In the ER they gave him yet another dose of his anti-seizure medicine ...so he was a zombie on the ride home and then slept all day and night.

We will call his Doctors in Omaha tomorrow and see what they want to do...probably UP his anti-seizure meds

Hope all of you Dads out there had a wonderful Fathers Day

Thanks again for all of the support   It means a great deal to us!

Karla

One more thing to CeLeBrAtE!!!

Nothing new to report on the scan today   Things  had moved around a bit but the Doctors seem to thing that is all due to radiation and such.  Travis will have another scan July 14th to make sure those evil little cancer cells mind their own business!!!

So with that said we are ready to CeLeBrAtE with all of YOU!  Please come down to Barry's Bar and Grill this Saturday night for Beers, Nachos, Friends and to support Brain Cancer Awareness (don't forget to wear your Team Travis shirt or any gray shirt you may have in your closet)!

You may see name-tags at the gathering.  It has been suggested it might be interesting to see just 'how' everyone is connected to Travis.  So please fill out a name-tag with Name (DUH) and how you are connected to Travis   For examples- co-worker, wife, sister-in-law, team-mate, grade-school buddy, HS friend, Doctor, pediatrician, BFF...you get the picture

Can't wait to see you all on Saturday!  Thanks Again!

Karla

I guess…

It is what it is...to say I was bummed I had another seizure would be an understatement. I guess in the back of my head I just assumed I wouldn't have another one since the tumor was fully resected. But looking back that wasn't a realistic or logical view. Aside from the aggressive taper off the steroids (which I firmly believe was the root cause of the seizure), I still have a LOT of scar tissue on my brain...let's face it...I have to accept that I'm at a higher risk for repeat seizures than most people.

OK...thanks for letting me vent...

If there is a 'silver lining' ( )to having another seizure, it's that I now know what to expect when it happens. I guess it's pretty common for people on Keppra (anti-seizure medication) to remember their seizures (lack of a better term). I remember everything, even Karla's conversation with the 911 operator. I was sitting on the edge of our bed, watching a show on dvr. A strange sensation suddenly darted across my brain from left to right. It kinda of made me feel light headed, like I did when I received pain killer via the IV in my arm. It went away as fast as it came on...but then a few seconds later it was back, only this time the sensation was also in my finger tips. My forearms, wrists, hands, and fingers locked up. That's about the time I started running for Karla.

I got to the top of the stairs before I collapsed. I was able to shift my torso so my forearms hit first and kinda braced myself, but I still took a pretty good knot on my forehead. Karla was already half way up the stairs when I fell. I started seizing immediately when I went down. I was coherent and very aware of what was going on around on me; but I couldn't communicate or control my body. I finally allowed myself to just ride it out. The whole episode lasted around 45-60 seconds. I was completely conscious and aware (and sitting at the kitchen table) when the EMT/Paramedics got there. I was exhausted and felt like I had just run a marathon. I let them check me over but wouldn't take the ride to the hospital. As Karla mentioned in the previous post, that was the first night I didn't take a p.m. dose of steroid...the day after I finished radiation! Needless to say I am still on the steroid. I will continue through tomorrow and Monday I will stop. Hopefully this will be enough tapering

I'm excited so many people have RSVP'd for May 15th...we may have to get the back room after all (if we do we'll get a keg or two )! It will certainly be a memorable night

I hope you are able to enjoy your day; take care and be well...TB

A bump in the road….

With all this good news we are sad to say Travis experienced another seizure last night

He is tapering off of the Decadron (steroids) and last night was the first night he did not take a p.m. dose...and his body and brain did not like that very much!

We are advised to try again a little slower now and also up his Keppra (anti-seizure medication) to try to prevent this from happening again.  This is just a MINOR set back but Travis (understandably) is devastated (not only about the seizure but the not driving for 3 months

I did call 911 (and it took like 6-7 rings for them to answer WTF) again but did not let them take him to the hospital as I figured (beings how I am so medically minded) that is was the steroid taper that caused it and he would be fine   The boys were sound asleep in bed and did not see or hear anything

Thanks again for all of your support!  We will try this taper thing again with better results to be reported

Have a great weekend!!!