Writer's block

In response to some brutal feedback (mentioning no names) about my lack of blogging, I'm back. Sincerest apologies to you all. My top three excuses for not writing are:

1. Returning to work
2. Writer's block
3. Oprah Winfrey has a whole new channel

On January 10th I started the new regime of chemotherapy which is a higher dose (300mg vs 140mg before Christmas) and lasts for five days in every 28. Depending on my tolerance of this dose, it'll go up to 400mg next month and remain at that until the end of the six months.

The first round, while no picnic, wasn't as bad as I was expecting. The anti-nausea pills work well and, for the most part, prevented me from vomiting. The main side-effect was fatigue. I was sleeping until 11am most days and then had absolutely no energy to do anything during the rest of the day. My appetite wasn't very good either, although some great comfort food (Cottage Pie especially), lovingly cooked by Anna, helped on that front.

The oncologist told me that I should start to feel better around 5-7 days after the course of medication and that was pretty much how it worked out. I felt a little better last Wednesday and then worked from home on Thursday and Friday.

This weekend I felt absolutely great and helped give Anna's brother, Phil, a true Minnesota experience. We started on Saturday with a drive on the frozen lake (see below), we all went cross-country skiing on Sunday, and then watched Patrick play outdoor hockey last night. Coming up we have snowmobiling and snow-tubing...I can't wait (but this is all for Phil, you understand!!).

Another proud dad moment this week as Patrick passed his yellow belt Tae Kwon Do test. It was driving him mad sitting on the sidelines watching Richard, so he just had to give it a go himself. He's only been going to classes for three weeks, so he did well getting up to speed so quickly (and passing the exam with style and finesse...he doesn't know any other way!)

As we don't expect much to change in the next few months, I probably won't write as often - so don't give me a hard time (Mary-Jo!!). I've added an email subscription tool to the blog, so it can let you know if I update, without you having to check back.

In the meantime, take care and have fun!

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!

Half-way!

Yesterday I had radiation treatment 18 out of 35 - half way through and feeling better than I expected (i.e. still no other side-effects other than tiredness). So I'm happy about that.

Following on from last week's comment about hair loss, it finally arrived in earnest this week. I guess I lasted well for the first three weeks of treatment, but this week it started coming out in clumps and I had to finally submit to the hair clippers. Here's a picture from a couple of days ago, although even more has fallen out since then. Oh well...

I had another great insult from my radiation oncologist this week. We were talking through current drug doses and he suggested that I could lower the steroid dose a little more. Great! When I said that I hoped that might help to get rid of the 'lemon on sticks' look (remember...skinny legs and fat belly), he said "yes, and the buffalo hump" (an additional layer of fat that accumulates at the back of your neck due to the steroids). These doctors are just great at boosting self-esteem! I have a very fragile ego y'know!

Nurse Anna has turned her attention to our dog, Maxi, this week. About a year ago he tore the cruciate ligament in one of his back legs, and although we've tried to manage it with drugs and less exercise, it's been clear in the last couple of months that we had to take the plunge and have the surgery. So, he had the op yesterday and joined me in the titanium parts club (bionic dog?). He's recovering well and we should have him back to full strength in 8-10 weeks.

At least it will mean less time out in the snow this winter - for him and us! The snow arrived last weekend, with an initial downpour of 6-8 inches and, although it's mostly melted now, it's clear that we're in for a looong winter this year.

Flying

Just a short post on an amazing experience this last weekend. I have a friend who has a small, single-prop airplane, and we've been talking about taking a flight together for the last couple of years and just haven't got around to it. So, on Sunday we made the effort and Daniel took another friend and me on a great flight over the lake, the house, and then down to Red Wing, a small town about 60 miles from here. We were able to take a courtesy car from the airport, nip into town for coffee and cake, and then jump back into the plane to head home. It was a crisp, clear autumn day and Minnesota looked beautiful from above.

We flew back closer to the twin cities and it was fascinating listening in to the air traffic control conversations with the other planes, especially as we flew closer to the international airport.

Big thanks to Daniel for a great experience and to Andrew for hanging out with us and buying the coffees!

No new treatment news, although the radiation therapy is starting to affect my hair. It's not falling out as such, so no need to go for the fully-shaved look yet, but there is a big gap around the radiation target spot. I think I'll get by for a little while longer on a combination of comb-over and baseball caps!

One of the (steroid-induced) benefits of waking up at stupid o'clock in the morning is that I get to see the beautiful sunrises over the lake...

TED talk

As many of you know, I'm a huge fan of TED.com (a free online database of video talks, normally 5-15 minutes each, on a wide variety of subjects). I was mooching around on there last night and, after watching a couple of fascinating talks, I stumbled across this one...

Stacey Kramer Talk - (it's worth looking at before reading on and only takes three minutes to watch).

While I don't necessarily share 100% of her feelings, I was struck by much of what she said as she went through her talk - phrases like "bring your family together"; "reconnect with friends & acquaintances"; "re-calibrate what's most important in your life"; "challenged, inspired, motivated, humbled". I felt like she was taking the words out of my mouth, and still had no idea exactly what she was talking about.

You can imagine how stunned I was when she revealed what she was talking about. I thought it was a courageous and moving talk and just thought I'd share it.

Treatment this week (8/35 radiation 'zaps' and 10 days of chemo) has continued to go well. I've felt no additional side effects other than tiredness, and my blood tests are coming back with good results (liver & kidneys coping well), so I'm happy about that.

Anna and I just enjoyed home-made pizzas and movie night with the boys - the perfect way to end the week.
Until next time.

(If you're interested, my favourite talk so far on TED is by Benjamin Zander, on music and passion - here.)