End of radiation (2)

Yesterday I had my last round of radiation (again). I'm very happy about not being 'zapped' (as Anna dubbed it) every day, but most of all I think I'm happy about getting the time back. Although I was only in the hospital for 30 minutes or less, the round trip was an hour and a half, followed by some downtime and a nap - I was losing a good three hours or so a day. I'll take chemo until Friday and then have a four-week break for good behaviour! Higher dose chemo starts on September 12th and will run for 6 months.

We celebrated last night by going to our favourite Irish pub for some comfort food (mmm....shepherd's pie!) and a Guinness (for me, not the boys!).

Now I can get back to working full days again. Well, at least until I take vacation in a couple of weeks for the summer onslaught (am I allowed to say that out loud?) of family visitors.

In the words of a wise man..."and that's all I have to say about that".

Managing Energy

Sorry about the lack of posts lately. I guess there just hasn't been much to report (medically) and too much good stuff going on to spend time blogging. That's good though, right?

A lot of people have told me how well I look recently which has made me think a lot about people's perceptions and expectations of cancer; and how I'm managing my own treatment program.

While there are aspects of the treatment that are no fun (chemo stomach cramps, hair loss, sore scalp, etc.) I'm trying to focus more on managing energy than on controlling (or complaining about) side-effects. 

One thing I'm really happy about is that I've been able to work throughout the first four of these six and a half weeks of radiation/chemotherapy. I really only expected to last a couple of weeks and then take medical leave and now I'm hoping to just work through the whole thing. The one thing I've done to help is take a couple of Fridays as vacation to give me long weekends.

I've also tried to keep up with cycling and yoga (and napping) as much as possible to keep the energy reserves topped up. I don't always feel like it beforehand, but I'm always glad I did afterwards.

I've been asked a few times what's been different this time compared to the October/November treatments. I think the main differences are the faster recovery from the second surgery and the fact that I worked hard to get in shape before the surgery and up until this round of radiation.

One thing I do know...I have never felt as alive as I did last night watching U2, leaping around in the torrential rain to 'Elevation' - what a blast!

Here's my favourite photograph from the night...

The best use of time

I'm often asked (as I'm sure many cancer patients are), "has your perspective on life changed?". The short answer is 'yes, of course' but I'd like to clarify a little. Probably the main thing that I've given a lot of thought to is the use of time.

I suppose when time is precious, which it is for all of us, how we spend it comes into sharper focus. For example, the back of our garage has needed cleaning and tidying for weeks, but as long as the boys want to play a game or kick a ball around, it'll wait. The amount of time spent watching mindless TV has been drastically cut; books that don't grab me in the first 100 pages are cast aside; and I've taken a long, hard look at my social media intake. In fact, dear readers, it was touch and go whether the blog would be continued - unfortunately for you, it will be!

I remember a conversation I had many years ago with a close friend and we asked each other, "How would you change your life if you'd been given the all clear from cancer?". I never thought then that I would really have to make those changes, but here we are. My priorities now are now family time, living healthily, and making the most of free time - from coaching soccer to relaxing with a good book and a glass of wine. I'm also fortunate to have a job that I love, so no changes needed there.

All of this makes me wonder...why have I waited until now to make these mindful choices?

I'm very happy to report that today I achieved one of the goals that I set in this post - to be up on the wakeboard by the end of July!

I'll finish with a couple of shots of the boys from this weekend, using their time well!

Mayo visit 2

Anna and I went down to the Mayo Clinic on Friday to meet with the neuro-oncologist who we hoped would give us a definitive answer on what type of tumour was removed in the April surgery. The results he had suggested that it was the same type as before (Glioblastoma) but said that there was still some uncertainty and that he would ask for some additional pathology tests to be performed. He also suggested that I return to Mayo today to meet with the radiation oncologist to discuss treatment plans.

In today's meeting I found out that the pathologist has downgraded the tumour to an anaplastic astrocytoma (there will be a test at the end of this post!) which is a grade III glioma, based on the additional tests performed on Friday. Although this seems like good news, it doesn't change the treatment plan and the original tumour site remains the primary concern.

The treatment is basically a repeat of the combined radiation/chemotherapy I had before Christmas, then a break of a few weeks, followed by six months of higher dose chemotherapy. There are some risks associated with having two rounds of radiation so close together, but they are far outweighed by the risks of the tumour returning.

I know this is not the most upbeat post, but I feel like I've had a few days of talking about/thinking about brain tumours and the treatment plan for the next 7/8 months and it has taken its toll. Maybe I just need a change of subject (or a good bike ride).

Fragility (by Anna)

Anna wrote this a few days ago and I think it encapsulates perfectly a somewhat 'hidden' aspect of this journey.

http://annamongan.com/2011/06/08/fragility/

Another trip to Mayo

Anna and I met with the oncologist yesterday to discuss the treatment plan now that I'm nearly finished the six week course of antibiotics. The trouble is there is a difference of opinion between the pathologist at the University of Minnesota (an expert in the field, apparently) and my neurosurgeon on the type of tumour removed during the last surgery. The pathology results suggested that it was glioblastoma multiforme (like the first tumour, a grade IV) but the surgeon and my oncologist believe that it hasn't shown the characteristics of that type (e.g. aggressive growth and change in shape). So, our medical team here believe that the best course of action is to get a second opinion from the experts at the Mayo Clinic (I wrote about Mayo here). Apparently they have some additional tests they can perform and different stains that they can apply to the pathology slides to reveal different things. I'm travelling down there next Friday. Hopefully, when I return I'll know which type of tumour it was and what the subsequent treatment plan will be.

I was extremely happy to get back to work at the beginning of last week, much quicker than any of us expected. I was able to quickly taper off the steroids and pain relief drugs and even managed to grow a little hair back before returning to the office.

I'll finish with a couple of photographs from a great memorial day weekend. Friday was 'Super Team Day' at the boys' school with lots of running, jumping, and (a definite highlight) a tug of war.

On Saturday we went with a group of friends from work to kayak around one of the lakes in uptown Minneapolis, although the 'kayaking' quickly turned into pedal-boating once the boys saw what was available for hire!

We rounded off the weekend with friends over for lunch, a bike ride for the guys, and a boat ride for everyone. Fun, food, and friends - perfect!

PICC Chick

Medical update

I've continued to recover well over the past couple of weeks, gradually sleeping less during the day and rebuilding my energy levels. The insomnia that I had after the first surgery has returned due to going back onto steroids, although I've already started to taper those so hopefully I'll be back to normal sleeping in a week or so. I'm three weeks (out of six) into the antibiotics which have done a great job of healing up the scar infection and now I have a longer picc line, I can self-administer the treatment.

Nurse Anna was almost redundant for a little while there, so I decided to shake things up a bit by weed-whipping (strimming) part of our garden, causing a bleed from the picc line coming out of my arm - oops! The on-call nurse came out and re-dressed it but unfortunately she kinked the line and so I couldn't push the antibiotics through, which I normally do just before bed. So, we got her back on the phone (much less 'on call' at midnight, it seems!) and had her talk Anna through how to re-dress the line (not as simple as it sounds). It all worked though and I'm looking into getting this t-shirt for Anna...

Other news

Some of you will have noticed that since my diagnosis I have been wearing a Livestrong wristband. I learned that today is the seventh anniversary of the launch of the wristband (by seven-times tour-de-France winner, Lance Armstrong) and apparently over 80 million have been sold in support of this great organisation.

Why do I wear one? Firstly to show support for and solidarity with other cancer patients, but it also acts as a daily reminder to stay strong and live each moment with energy and purpose.

I think the manifesto they created is incredibly powerful:

The Livestrong Manifesto:

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is LIVESTRONG.

I mentioned last time that the bike decision was almost made and here is my new ride...

I went for a first ride yesterday and, although it was less than an hour, I was exceptionally happy being back on two wheels, enjoying the sunshine and the lakeside views. Bliss!

Finally, a book recommendation (for those of you that appreciate them). Cutting for Stone by Abraham Verghese. An outstanding novel, set mostly in Ethiopia and chronicling the lives of twin brothers born to an Indian nun and an English surgeon. I won't go into any more details, but this book has gone straight into my top 5 books of all time. Quite unforgettable.

Hasta la proxima!