Some positive news...

Just a quick post to get this news out...

I had an MRI this morning and a consult with the neurosurgeon this afternoon. In short, the lesion at the back of my head hasn't changed shape or density since the October scan, so he didn't see an immediate need to operate or biopsy. What a relief - I really wasn't looking forward to the whole surgery experience again.

The plan now is to continue with the six months of chemo for the original tumour site and perform another scan in three months time to monitor for changes on the second lesion. So, although I'm conscious that we're not out of the woods yet, it feels like a positive start to the new year.

Another piece of good news the surgeon gave us was that I should be ok to start driving again, (we were led to believe that I couldn't drive for six months from the date of surgery). That's been one of the most frustrating things about the last four months - relying on others to go anywhere, when I felt perfectly capable of driving myself. We're going to call the licensing office tomorrow and, all being well, I'll be causing havoc on Minnesota roads by the weekend.

(Anna has got all sorts of crazy ideas about me driving Patrick to his 8am Sunday hockey games - we'll see!!)

Not having surgery also means that I can start working again, at least in some limited way (yes, I hear all your jokes..."didn't he always work in a limited way?"). The new chemo regime starts on January 10th, so we'll see this month how much it affects me and how much I can work. I'm certainly ready for it - there's only so much Judge Judy one can take!!

Happy new year to you all

Love & best wishes

A (surprisingly) rough week

Ok, so this time I have an excuse for not writing. Early last week I had a couple of days of being sick,  which could have been caused either by the build up of chemo drugs or the after-effects of the radiation treatment.

Then, from late last week until Monday I had a low-cortisol crash caused by coming off the steroid I've been taking. Apparently the body doesn't always kick in cortisol production, (a hormone produced by the adrenal gland), after having had it artificially for the last few months. It left me with no energy, low appetite, an unquenchable thirst, and some other unpleasant side-effects. Although we tapered off the steroid gradually over the last few weeks, the oncologist has put me back on a low dose and we're going to try and taper off again over the next few weeks. Hopefully, it'll keep my energy levels up over Christmas. (And the increased appetite caused by the steroids gives me a cover story for the extra turkey sandwiches!)

All-in-all it's been a frustrating time, as I'd planned to do so many things over these couple of weeks - I'm not a big fan of sitting around and sleeping during the day (contrary to popular belief!)

Luckily the steroids kicked in enough on Monday night to be able to go and see a Minnesota Wild, (state ice hockey team), game. They beat the Calgary Flames 4-1 and the boys had a great time, so it was worth  getting up and out for.

Proud dad moment of the week...Richard gaining his yellow belt in Tae Kwon Do...

I don't have much more news. We're all ready for a relaxing, family Christmas. The boys are super-excited and Anna has already made the first batch of mince pies - mmmmm!

We wish you all a wonderful Christmas and a very happy new year.
Love from
Barry, Anna, Patrick and Richard.

Psychoneuroimmunology (and other everyday words)

I know it's been a little while since the last post. Am I losing my readership? Tap Tap - is anyone out there? Oh well, I'll carry on regardless. Here are some updates on the last couple of weeks:

Treatment - Radiation therapy will be finished next Friday, and I'm ready for it! I really notice on the weekend days that I don't have it, how much it tires me on the weekdays that I do. It's also made my scalp sore and my hair fall out. (Grumble grumble.) The current dose of chemotherapy will end next Friday too; I get a couple of weeks off for good behaviour! The chemo will restart at a higher dose in January and run for six months.

On December 30th we have an appointment with the surgeon to discuss whether he will perform further surgery on the rear of my brain. (Remember from this post that there is a second lesion, but until a biopsy is performed they don't know exactly what it is.) Any surgery would probably take place during the first week of Jan.

Needless to say, we're really looking forward to Christmas. This is the first year that we'll have spent it here in the US and, although we'll miss our families, we're looking forward to lots of relaxing family time and perhaps a little cross-country skiing.

Another story of hope - On Friday one of the volunteers at the radiation centre, Tom, introduced himself to Anna and me and told us his story. He was diagnosed six years ago with the same type of tumour as me and today his MRI scans show him to be tumour-free. The main difference is that they were only able to remove 20% of his tumour during surgery (as opposed to the removal of the entire visible tumour in my case), so the remainder had to be treated with radiation and chemotherapy. Coincidentally, he also had a scar infection which prevented him starting treatment for seven weeks, during which time the tumour grew from 3cm to 7cm. The incredible part of the story is that the chemotherapy alone then shrank the tumour away to nothing and he was eventually given the all-clear.

Now, I know that for every survivor story like this one there are many others who aren't so fortunate, but Anna and I were really encouraged by the effect of the chemotherapy on such an aggressive tumour.

Positive thinking - A few of you have commented about my keeping a positive attitude throughout this journey. Well, I've been reading about a branch of science called Psychoneuroimmunology (it trips off the tongue, doesn't it?!) - let's call it PNI. Basically, PNI studies the connections between your mind and your immune system and there is increasing evidence that each affects the other. A sense of helplessness, for example, can suppress your immune system, while a sense of purpose can enhance it. I’ve oversimplified, but you get the point: your mind does control your immune response. There's lots more research to be done, but it's one more reason to stay positive.

Thanksgiving - One of my favourite holidays. We started very slowly with a late breakfast and lots of relaxing, followed by sledging with the boys (see video below). We rounded off with a wonderful dinner with our friends, David and Colleen, with double helpings of everything - perfect!