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Quote of the Day:

Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith.
- Henry Ward Beecher
Aug 28

Aidan’s Birthday / My Appointments

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Today is my son Aidan’s birthday – 6 years old!  His new favorite response to everything now that he is older is “I know”.  Isn’t it awesome?  Aidan, don’t throw that rock.  “I know”.  CRASH.  Aidan, please don’t use the couch as your personal pommel horse.  “I know”.  BOUNCE.  Anyway, he came bounding out of his room this morning as if he was having a party with cake at 6:30am.  If he would have had a party horn it would have been blowing hard.  Thank the Lord.  Immediate questions – who’s coming over today?  Will there be cake mom?  Dad, you have a tie on – aren’t you going to stay home??  Of course we explained all of this (how Thursday would be) and had a great party for him at a waterpark with his friends a week and a half ago – and this weekend have something planned with the family, but TODAY is his birthday and he was determined to start it off right.  So at 6:30 this morning, there we were – me in my tie, Rachael barely awake, Keegan drinking a bottle on her lap, the dogs still asleep and Aidan opening a present from his aunt and uncle.  You have to love kids.

I had an appointment with my neurologist on Tuesday and it was a very good appointment.  I had increased my dosage of Lamictal on a daily basis to make these very subtle seizures presenting in my left bicep disappear.  So far, I’ve been pretty successful in chasing them down.  No one likes to chase a problem with meds but in this case, we are not a) switching to another medication and b) the problem is not significant at all.  So, it seems to be addressing it.  As I’ve explained, it is almost like a small muscle spasm.  Oh well – I’m dealing with it.  I’ve sensed slight weakness on my left side but I checked out just fine at my appointment – he didn’t detect any at all.  So he set me up for an appointment at 6 months – Feb of 09.  Sounds good to me.

There were a few moments in the past week where I reflected on everything and thought about what is happening, albeit subtle, coupled with the latest MRI.  Regardless of how much I have turned all of this over, my faith and peace I pray for, I can sometimes fall into that trap.  I made correlations between the MRI not using the term “stable” anywhere in the final report coupled with small seizures and what I detect as slight weakness from time to time.  Mr. Logic takes over and says that these all are tied together and mean something.  However, when I speak with a doctor, like I did on Tuesday and he says a) I don’t detect any weakness, b) your report indicated some enhancement – that means the blood brain barrier has broken down and that naturally happens – it’s not really a concern and c) seizures don’t always suggest anything is occurring with regard to a change in a brain tumor, you get straightened out.  For the most part I have always let all of this be but it creeps in mostly when there are physical reminders.

Tomorrow I have my regular checkup with my neuro-oncologist which should be uneventful.  Other than that, getting back into the groove after a great vacation!

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Aug 25

Back From Vacation – Victoria, British Columbia

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We’re back from our vacation to Victoria and it was so nice to get away.  As I said before, we haven’t been away for more than a long weekend since Rachael was pregnant with Keegan – around Jan 07!  And since he was born, Rachael hasn’t been away from him for more than 6 hours.  We needed this and it was just a great trip.  We had some really nice evenings – great dinners, went horseback riding one day, went to an amazing garden called Butchart Gardens (if you’ve been there you know what I mean) and did some shopping.  The first day we were there we slept in until 8:30 which is LATE for us!  The other mornings we were up a bit earlier.  I’ve included a number of pictures in this post that will give you a good idea of the sites. 

The weather could not have been more perfect.  On day 1 we arrived to some very light sprinkles that cleared up within an hour – enough for us to walk around the inner harbor and then Thur-Sat was sunny and in the low 70’s.  On Sunday, when we arrived at the airport and were waiting on our gate, it was pouring down rain!  I think God had planned our time pretty well there. 

Health-wise, I did pretty good.  I had a little bit of weakness on my left side at one point but it cleared up pretty quickly.  Of course I brought all of my meds in my carry-on – no issues at customs either way.  When we got home the kids really missed us.  They (particulary Aidan) really missed us.  Aidan was apparently counting down the hours.  We sort of were!

So that’s all for now.  I have a few appointments this week with my neuro-oncologist on Thursday and my Neurologist tomorrow.  I don’t expect much to come from these but I will be interested in my neurologists input on the small focal seizures I’ve been having.

Pictures (Click on each for full size)

Victoria Inner HarborThe Empress HotelButchart Gardens EntranceButchart Gardens Sunken Garden

Butchart Gardens Mark and Rach

Butchart Gardens Rach

Cheers,

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Aug 19

Feeling Great!

My Story 1 Comment »

I’m really getting back to a pretty normal life now.  My son Aidan is starting in on his first year on a soccer team, I’m coaching so I’m out there on Wednesdays and  Fridays with games on Saturdays that start in September and all in all being off of chemotherapy for 6 weeks or so (can’t really remember how long now!) has been great.  I certainly remember what it’s like – and when I was on it I just accepted life as it was – you have to.  But I’ll take this.

The only issue I’m dealing with is I’ve had some small focal seizures in my left bicep that are more like muscle spasms but my neurologist and I both agree they are not.  I could chase them with meds or just take an extra pill when they occur which is exactly what I’m doing.  They occur every once in awhile and are more of an annoyance than anything.  They don’t happen too often.  I had a period about a week ago where I had them over a 5 day period every day for awhile, some lasting for 30-45 minutes.  However, the instructions here are not like before.  Before, if they lasted more than 15 minutes it was “go to the ER” but because these are so mild I just ride it out.  One day I did take an Ativan and went to sleep.  Other than that, all is good.

We are going on vacation for the first time in a long time!  Heading to Victoria BC.  We’ll be gone for 5 days, just the two of us.  We haven’t gone away since we went to Paris and that’s been over 2 years.  Well, the last 2 years we’ve had a job change and major move, a high risk pregnancy w/bed rest, a brain tumor diagnosis with surgery, radiation, chemo, emergency c-section and first year with a newborn.  Kind of prevents you from taking a vacation!  So, I’ll post some pictures when we get back.  Victoria is beautiful.  I went there a very long time ago but remember it well.

That’s it for now but I’m feeling about as good as I did in May of last year before my surgery in June.  I’m playing some music when I have time.  It’s a bit more difficult with Keegan.  My studio isn’t as sound-proofed as I would like.  I’d like to move the whole thing into a walled off area in the garage which is a three car but it’s a big job and with what’s going on, I’m not sure it’s a good idea.

Cheers,

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Aug 06

Feeling Much Better

Medical Updates 1 Comment »

What a difference being off of chemotherapy makes.  You have to do what you have to do, no doubt about that, but once your dues are paid for that time it sure is nice to have the break.  I actually feel like a normal man for the first time in about a year.  I did ok on chemo.  I worked, I even worked during the last 2 weeks of my radiation treatments and went and had them during lunch hour.  I had fun with my family – went skateboarding with my son (something I hadn’t done myself in 25 years but picked back up like riding a bike) so it’s not all bad.  However, the fatigue is the most significant battle. 

Making a list on Friday for the weekend – just a to-do list and then following through and not being able to finish it was frustrating.  I would only partially complete a list and then have to take a nap.  Many times I was done for the day.  Sunday we would go to church in the morning and I could get a few more things done but would have to take another nap.  Anyway, just it’s something I just learned to deal with and accepted.  It sure is nice now though!  I’m starting to feel more energy which is great. 

As far as being immuno-suppressed, my doctors say it will be 6 months before my immune system is fully recovered from the chemotherapy.  I can tell – I’m still walking around with occasional nasal congestion and so forth but all in all things are getting progressively better.  Now it’s a matter of watching myself for any symptoms and scanning.  I’m going to enjoy life.  My wife and I were talking last night and there is always the anxiety that comes up – and the almost surreal feeling that this is all happening but things happen to people all the time.  We are pretty much over all of that part of it.  The real anxiety that we struggle with still, we realized, is more acute and is around MRI time we have gotten more used to dealing with it over time.  We’ve been doing this for nearly 2 years now and it’s been over a year since my surgery.

That’s it for now.  We’re going to Victoria, British Columbia on a vacation here soon.  Our kids will stay here with their grandparents so it will be nice to get away.  It’s the first time we’ve really had a get away since we were in Paris several years ago and that seems like an eternity!

Will check in soon here..thanks to all of you who have sent emails and well wishes.  As always, they are so much appreciated!

Cheers,

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