HBB: A dark room on a gray day

It's 4pm on a gray day. I'm still in my sleepwear sitting in bed. The shades are open just a few inches to let just a little light in.

Nope, this isn't a bad mood.

Next to me Keri is hurtin big time from a migraine. I've spent the day bringing up various ice packs and keeping her company. That's about all I can do. The dark room, ice packs and rest are about all she can do for these. Lately, they've lasted days and made her feel really crappy.

I'm glad I have this day off. I may not be able to help out, but it's nice I can be here to try. Keeping quiet is a challenge for me. In case you hadn't heard, I do have moments of lack of coordination. This can lead to thumps and crashes. :)
We're thinking about trying a audio book now to see if this will provide a good distraction from the pain. It can't hurt. But, I guess that's easy for ME to say.


HBB: Results Good!!

Okay, so after we got the good results on Monday, things zoomed right back into the hectic swing of things. All of a sudden, it's Saturday, and I haven't posted!

Here's how it went. KinnicChick and I stayed in a Hotel near the hospital the night before the MRI. I had the MRI very early in the morning. Then, we waited for the eternal hours between the MRI and the meeting with the neuro-oncologist. We got coffee and wrote and wandered around.

Then, we went for the appointment to get the initial results.

First, we had a bit of a shock. The doc pulled the wrong MRI results on to the computer screen. These MRI results showed a pronounced tumor in a brain. The results made no sense since this showed a head with much more brain than I have. But, it was still an initial shock. The error was corrected and the doctor displayed MY results.

All looked good. I've formed an almond-size cyst that is new since the last time I was in. But, this is no problem.

All in all, very exciting news. Much relief.

Then the doctor looked back at the recent tests on my brain function. He looked at the results, then the MRI, then the results. He told me that he would not have expected the good level of memory I have based on the MRI. He told me that I must be exercising my brain in the right ways. That was nice to hear.

Afterwards, KinnicChick and I talked about how much it surprises us each time we see the MRI results. Let's just say that we were reminded that "HalfBrainBoy" is quite the appropriate name. And, I appreciate the doc's nice words about how I've been able to use what I've got. I've been lucky. And, I've had wonderful people around to help me.

Now, it's time to head into the holidays. Especially this Christmas, I think I'll have one of the nicest Christmases ever. I think this Christmas I'll likely feel the most gratitude ever.

There are my most favorite christmas cookies! KinnicChick's secret recipe. Time to start the holiday feasting.

I wish the best to you and yours.


HBB prompted to remember "then" and "now"

The post yesterday about the MRI had caused me to reflect a bit. It's been a wild ride.

Things are so good now.

I was looking for pictures to give an idea of how good things are now, compared to a things didn't looks quite so good.

What better than a picture as I left the hospital after surgery side-by-side with one that shows this summer's fun?

Your brain in pain:

Your brain having fun:

Any questions???

Just so there isn't any doubt, I opt for the "brain having fun".

Oh, and one last thing. Keri, when you try to make rabbit ears above somebody's head, make sure they aren't wearing a hat. :P


HBB: Thoughts on brain tumor follow-ups

Monday will be an interesting day.

I approach Monday with very mixed feelings.

Monday is my regular follow-up brain MRI to see if everything is stable. After the MRI , there is the wait for some of the most intense hours experienced. Then, there is the meeting with the neuro-oncologist to get the results.

I would be lying if I said I didn't have any worry. Maybe just a tiny bit. But, the day I have these MRI’s are also like my own personal Thanksgiving Day.

I have a new set of feelings about these brain MRIs each time I have them. But, there is no way I can approach these days as “just another day”. I knew a brain tumor survivor, a guy who had a similar type of tumor. He said that, after years, he approached these follow-ups as nothing more noteworthy than a dentist appointment. Years down the road, one of these “dentist appointments” changed his life.

I think I’d lose out on something if I felt that these MRI where nothing more than dentist appointments. I think I’d miss out on an opportunity to feel such intense feeling of gratitude and relief.

I was recently listening to someone who was waiting on biopsy results. She described the feeling so well. She said, “I KNOW this is NOTHING…but there is just this part of me which realizes this COULD be something.”

Exactly. There is always the "what if".

Monday, I will get good results. I know I will.

I hope. Life is too good right now.

So, I know they won't be finding any enhancement or growth. All will continue to be stable. But, there is a small voice tapping me on the shoulder, “…but, it COULD be something”.

And, I probably pay a bit more attention to that small voice because I’ve experienced receiving the unexpected call, “we’re sorry to tell you, you have a brain tumor….” After experiencing the unimaginable, you realize the unimaginable can happen.

I don’t really think this is a sign of excessive worry. This MRI really IS nothing. But, it gives me a chance, if I will pay attention, to realize how lucky I’ve been that it always been nothing. And, once again, I have a vivid reminder of how far I’ve come.

These days are strange. I’m working. I’m playing. I’m doing housework. Keri and I are reading or watching movies. Then, suddenly, in the middle of it all, there is a date on the calendar that could throw everything into a single-minded fight for survival. Again.

It won't throw us into a fight, because the results will be nothing. But, still...

I’ve been reminded that EVERYONE, each day, has the potential of running into some unexpected life-changing crisis. I realize this. But, I have this on my calendar. It’s different when it’s a single point in time. Monday: Celebration or Crisis? I guarantee that by the end of the day, I will be feeling something fairly intense.

And, I’m told I’ll likely have these follow-up appointments for life. Part of me groans at the hassle. Part of me wants to forget about it. But, fortunately, there is now still a part of me that appreciates this as a reminder to be thankful. There is nothing like the big relief from good news about a brain tumor.

Now to make the big decision, which kind of music should I request on the headset in the MRI? And, where to go out to celebrate after the good news?


Let the Records Show, You Have Been Warned

I head to the local Relay For Life 2008 Kick off meeting tonight to pick up the packet for the team.

Yes, it's that time of the year again for all things Relay to enter my head and begin to swim around and take root. I may not be on the committee this year (thank goodness for a break for my wee brain from that) but that just means I'll have more time for our team and to have more time getting creative with ideas for fund raising and having fun!

Expect to hear more about the power of purple from me around here. Maybe you'll consider a quick donation for the holidays? I mean, what's better than tossing your money to a great cause like cancer research than tossing it away on more unnecessary disposables?

And? If you live in the area and happen to read this site, I may be hitting you up to be on the team. I love a full team of 15 people. The more the merrier. If you haven't been on it before but have considered it, consider it hard. If you have been a member of the Merry Brain Trust (no, I'm not changing the name, but it is the Holiday season), be prepared for recruitment season to begin. My new Team Captain and I are looking for YOU.

Give that some thought and bookmark my site. We'll talk.


I'd like to Teach...

Lying here thinking I should go to sleep. Was just reading a few other bloggers and happened upon Schmutzie... This piece. It brings back some pretty interesting memories of my days in lessons on the Organ. With Mrs. F.

recital day... god help me.

Oh yeah. Good times.

That's about all I wanted to say. It just seemed like it was time to update around here. Since somebody had gotten too busy to write or something.