Blogging in B Minor

Quote of the Day:

I really don't know why it is that all of us are so committed to the sea, except I think it's because in addition to the fact that the sea changes, and the light changes, and ships change, it's because we all came from the sea. And it is an interesting biological fact that all of us have in our veins the exact same percentage of salt in our blood that exists in the ocean, and, therefore, we have salt in our blood, our sweat, and in our tears. We are tied to the ocean. And when we go back to the sea, whether it is to sail or to watch it, we are going back from whence we came.

- John F. Kennedy

Nov 01

Neurosurgeon Appointment

vaccine, Brain Tumor 3 Comments »

I mentioned that Rachael and I had an appointment with my neurosurgeon to go through our strategy moving forward. Rather than go into a lot of detail regardint the hour-long discussion, here is what came out of it:

We knew I had been “accepted and approved” into the DCVax-Brain program. The final hurdles were a) did they have enough tumor to manufacture the vaccine and b) did I have the genetic markers necessary for this to work. The answer to boh questions is YES!
We were asked about treatment options. First is conventional. You perform surgery then use standard chemo. The second is a clinical trial that has been established. The third is experimental (the vaccine)
We have opted for the vaccine, however, we have also decided to do a consult at UCSF to see what other phase I/II trials they have so we aren’t putting all of our eggs in one basket.

As with anything, experimental is just that - it could yield amazing results but there could also be side effects. Regardless, we have to be aggressive so that is why we are going with the vaccine

More to come on all of this. It will take 4 weeks to manufacture the vaccine so in the meantime I’ll rehab my left side and spend time with my family…

Subscribe by Email RSS Subscription Stream River of Faith Purchase River of Faith

Tags: Brain Tumor

, Faith

, hope

, My Story

, recovery

, vaccine

Aug 19

Feeling Great!

My Story, Brain Tumor 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,