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

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

Done.

I'm officially done with radiation In all honesty it seems so surreal; like the more things change, the more they stay the same (moe. anyone?). Don't get me wrong, I'm stoked that I'm done...but the reality is I still have a long road ahead of me and this is just a stop along the way, albeit an important one...

Celebrated the milestone at IHOP (I know...FANCY)  and met most of the family there. I have a confession...I thought this would be a nightmare!! You see....first time restaurant-goers for the twins. But they were so good...and they ate VERY well (very picky!)! Timmers had at least 4 good sized pancakes with syrup; B had 3 and a half pancakes and 3 pieces of bacon! It was comforting for me to be with those I care about most; your support through this has given me strength and I hope you know how much it means to me.

Funny story about Tim...the kids were off running around outside on the sidewalk when Tim stops, and points to a sweeeeet Dodge Viper and said, "I want to ride in that!" Hilarious

On the afternoon of May 12th, I will have my first three month check-up with Dr. Aizenberg and The Team; but first in the morning (gotta get my Zio's for lunch ) I will have a moment of truth, the first MRI since they wheeled me into the tube the evening after my surgery. It will serve as a baseline for how my brain looks now. Keep your fingers crossed... I will continue to go to Omaha every three months for an MRI and a check-up for the next 2-3 yrs.

My brother-in-law asked me tonight "what's next?"...appears that is the million dollar question as I have no solid answer. So I guess that's the next step...figuring out my next step. I have been so focused on the here and now I haven't allowed much thought for the future. Fatigue caused by the radiation will continue, probably through sometime next week before I notice any change; that + the steroids = still no sleep. They are aggressively tapering me off the steroids and I am SO thankful for that. I can't tell a difference so far with how I feel, but I'm hoping that as I get down to 1mg a day and then I'm done with steroids on Monday that my health will quickly return.

Oh yeah....to top it off...I have walking pneumonia (just means it was caught early). Got a real nice 'hack' that fits right in well with all the other side effects I've encountered.

Oh well....it is what it is, right? Another obstacle down, and time to rest and get healthy before I tackle the next one.

I hope you all are well....TB

Thirty down, three to go…

Hi All

I hope you are or will get to enjoy this Friday afternoon...it's beautiful!

It's hard to believe I started radiation six weeks ago...it's all kind of a blur. I will officially be done this coming Wednesday. They have already started tapering me off the decadron (steroid that's the root of my misery and which you can't quit cold turkey). They are being aggressive with the taper, which I truly appreciate, and it looks like if all goes well I should be off the decadron in 10 days.

I finally got the green light to start driving...it's amazing what we take for granted. I didn't realize the independence lost until I was relying on someone everyday for a ride.  Nonetheless, I have my keys back and I couldn't be happier

I'm looking forward to the party on MAY 15th at Barry's Bar & Grill! Should be a GREAT time! And if you have a Team Travis shirt, wear it or a shade of gray to promote brain cancer.

Guess that's all for now...be well and happy...TB

Half way there…

Hi All...

I hope this finds you well. Did you get outside today (for you NE peeps)? It's pretty special what some sunshine can do...that and the energy spent outside by my twins They LOVE it that the 'sun came back'!

I'm just past half-way with my radiation treatments; 17 down, 16 to go. I have to admit it feels really good knowing I'm on the downhill with this thing...but it's really starting to take it's toll on me. I started losing my hair last week and it's pretty noticeable. You can really tell where the radiation is entering/exiting my noggin. I still can't sleep for more than a couple hours at a time...and when I wake up, it's usually for good. Nothing like starting your day at 2 or 3 am Enough complaining....it could be so much WORSE.

Well...I'm exhausted and am going to sign off for the night. Reminder: MAY 15th, BARRY'S BAR & GRILL...more details to come via FB and travistuesday.com.

Until next time...be well and happy....TB

The good news keeps coming…

Today I am being discharged into out-patient therapy from the Day Rehab Program. I will see a speech therapist once or twice a week (I'm told there is homework), basically it's far less intense; and I have completely been discharged from occupational therapy. The things I need to work on I can do on my own...needless to say I'm pretty stoked.

I feel like my speech is improving every day, though Karla and my folks/family tell me they can barely, if at all, tell a difference. I think it has more to do with getting my confidence back than anything. I've come a long way, and I have long way to. But I'm finally starting to see the light at the end of tunnel. And that my friends, is a nice feeling

This past Friday afternoon I went into the office to pay a visit to my friends/co-workers...it was simply amazing to see everyone! The love and support I have received from them far exceeds anything I could have imagined...I am eternally grateful.

Radiation...it is what it is so far. Just had my ninth treatment this morning...but I think the fatigue factor and the steroids I'm on is affecting my sleep. I'm going to bed right after the boys (9ish...abnormal)...which is all fine and well because I feel so drained...but the steroids won't let me fall into a deep sleep (common side effect). I can't sleep for more than and hour or two at a time.

As mentioned by Karla in the previous post, please save the date May 15 and join us at Barry's Bar & Grill for celebration!! Plan on 7pm...more details to come.

Have a great day and be well...TB

Next step starts tomorrow…

Right now I'm watching USA Hockey vs. canada...hopefully I won't get too distracted...

The next step for me, radiation, starts tomorrow at 11:15am at St E's. Tomorrow they have to get the proton thingy's set up, so it'll take 45-60 minutes. But from Tuesday on it will only take about 15 minutes. I will go five days a week for six weeks. It will be a localized radiation therapy, as opposed to total brain radiation therapy (lack of a better term), since she got it all This is a good thing...the side effects of a localized radiation are far more minimal than those of the total brain radiation. I pretty much am certain I'm going to be fatigued more so than usual. I may notice dry mouth and I will have to drink water or Gatorade all day. My taste also might get screwed up. On the bright side, I don't have to do chemo. It is what it is and I can handle it...but just the same six weeks can't get here soon enough.

Speech and occupational therapy are going very well. My speech is improving every day. I still get hung up occasionally trying to find a word, especially later in the day when I'm tired, but it's drastically better.  OT is also going well. My fine motor skills (typing) are still not up to par...but I have full movement and strength in my right hand. I'm confident I'll be back to my old self eventually

Check out the sweet shirts a few of my co-workers created. Click on the t-shirt link at the top of the page. Thanks to all who's had a hand in this!

Thanks again for all the kind words of support and love...it means a great deal to us to have so many wonderful people in our lives.

Be well...TB

Great news…

Met with Dr. Aizenberg today to get sutures out and received some great news...

THEY GOT WHOLE TUMOR!!!! TOTAL RESECTION!!! Pathology determined what they initially thought to be small piece of tumor actually was brain swelling

So many emotions are running through me I'm shaking!!

This doesn't mean I'm cancer free...there are cancer cells still left which we need to kill with radiation. But this is a huge step in the right direction

To think...this went from being in-operable to TOTAL RESECTION...I'm speechless...

To the amazing and talented Dr. Aizenberg, THANK YOU FROM THE BOTTOM OF MY HEART!!!

Good to be home

That's an understatement...being at home is exactly where I need to be.

I want you to know how much strength I have drawn from your love and support...words can't explain. I hope you all know how grateful I am to have such wonderful family and friends like you. Thank you from the bottom of my heart.

I apologize this so short; it's frustrating not being able to type (it's coming along...slowly but surely ).

Be well...TB

Countdown…

Aside from barely getting to see my boys on their 3rd birthday, today wasn't too shabby...been a long day, but nothing new there. I did get to talk to the boys on the phone, they're staying with my parents tonight, and it made my day and broke my heart at the same time...I know I've said this before, but I'm glad they don't understand what's going on. I just hate how it takes me away from them...the only comfort I have is knowing they are in good hands.

As I type this it's roughly 7hrs til game time. I have to be at the surgical center at 6am. It'll take 60-90 minutes to get me set up. I'm not real clear on what all this entails other than immobilizing my head. I know they will have curtains (lack of a better term) set up and the folks who I will be able to see will not be able to see the surgeon. I believe they have surgery set for 730am or thereabouts...can't start soon enough as far as I'm concerned.

The first part of the procedure is the craniotomy, cutting and removing part of the skull. There is a cranial fluid sack (can't recall what it's called) that is between the brain and the skull so that is next...I'm not sure what she'll do but I do know she will repair this sack before replacing the skull section (apparently there are surgeons who allow this to repair itself...?).

Once she's comfortable with all of that, they will wake me up...still seems weird/scary. I guess they're never sure how people will react to this...she's had people who are totally groggy and never really 'with it' and others who are wide awake and completely aware of what's going on. I have no idea which side I hope to be on...

Once I'm awake they will do different tests involving motor and speech skills. Basically the surgeon is learning exactly what the tumor is touching in relation to the brain. Specifically, she's looking for primary functions and secondary functions so she knows where she can cut and where she needs to stay away. Primary cannot be re-learned and she has every intention to stay away from anything primary...but secondary can be re-learned and she will be more assertive in that area. I'm ok with this...completely ok. If it means being around longer for my boys and for Karla, hell yes I'm ok with it.

In speaking with the surgeon, she appears to be extremely meticulous...and of course I'm also perfectly fine with that It's hard to say how long surgery could last...they've pretty much scheduled it for most of the day. I won't be surprised if it's 8+ hrs. I assume they'll let me somewhat get my bearings about me...but not long after the surgery is completed they will shove me in the effing tube again and do an MRI scan which will serve as my new baseline for future scans (Lincoln has an 'open air' MRI...wonder if I can go there??).

They will keep me in the hospital for 3-5 days for sure...there's a lot of unknown's until after the surgery. Hopefully I'm boring you all with another blog post Wednesday or Thursday

I probably sound like a broken record...the support Karla and I are getting from you all is nothing short of amazing! Please know that it means more to us than words can describe! I hope you all are well. Take care...I'll chat with you later.

PS...The Thousand Cranes are hanging up in our room and will be waiting for me as soon as Karla learns what room they're putting me in!