Post-surgery (and a new bike!)

I think most of you have had updates on my most recent surgery.

I really did try to 'live-blog' but it just went something like this...

11:05 skull removed
11:14 tumour resection
11:30 latte
12:30 lunch
13:00 hair styling conference
13:30 side-parting discussion
14:00 more side-parting discussion
15:34 side-parting direction decided
15:35 close-up

There was one slightly interesting technique used by the surgeon this time to ensure that he was operating within a safe margin of tolerance around the second lesion. Apparently sensors were attached to parts of my brain to ensure that he could see when my right hand (for example) was being stimulated. Fascinating stuff and a big relief to come into the ICU with no after-effects of the surgery.

Yesterday we had some preliminary results back from pathology on the secondary tumour, suggesting that it was either a grade II or III glioma. The surgeon is now in contact with a number of other neuro-surgeons and oncologists and they are working out an action plan for further treatment. The main issue will probably be that I'll need further radiation therapy as well as completing the original course of chemo.

Fortunately, the surgeon was also able to reopen the original scar and perform an antibiotic flush to ensure that that there was definitely no infection to that site. Further tests have shown that the infection just didn't properly clear up as we had hoped and I've now started another six-week course of picc-line antibiotics to get that dealt with. All under the wonderful care of Nurse Anna.

Bike news - I'm pretty much down to a choice of two bikes for my 40th birthday present from Anna (it might just arrive a little early!). Now I just need some decent weather and a training plan.
Until next time - big hugs.

Ready for surgery II

After a slight blip last week when it looked like the surgery couldn't go ahead this week (my platelets were low again following last month's chemo), we got the go-ahead today for Wednesday. Surgery is at 11am and will take around four hours.


A few people have asked how I'm feeling about this surgery, whether I'm nervous etc. I can honestly say that I'm less nervous than last time. I think having been through it once (fearing that brain surgery might affect my personality, intelligence, coordination, or whatever) and made a good recovery, I feel like the same must be possible this time. Also, I think that last time much of the anxiety was caused simply by learning that I had a brain tumour and suffering the symptoms that went with it.


We also have great faith in the excellent medical team that we're surrounded by, especially the surgeon himself. We've often said that he's probably not your perfect Saturday night dinner guest, but he's passionate and knowledgeable about brains and has explained in great detail what he's going to try to achieve.


All of that said, I know it's still a major operation and I'd be lying if I said I wasn't afraid.

One of the blogs I follow is written by an American guy who has lived in Japan for many years and often comments about aspects of Japanese culture. He mentioned a proverb this week that resonated with me, given the ups and downs of the last few months.


"Nana korobi ya oki" which means 'fall down seven times, get up eight' and speaks to the Japanese concept of resilience. No matter how many times you get knocked down, you get up again.


This approach has brought us this far and will continue to sustain us in the months ahead.


Thanks for all of your support, prayers, and good wishes. One of the greatest sources of strength for Anna and I these last few months has been the feeling that all of our friends and family are behind us. We deeply appreciate it.


I floated the idea of 'live-blogging' the surgery with Anna, but she said I might be a little bit out of it. I'll be back just as soon as I can. Until then, take care and have fun!

New challenges

When I said at the end of the last post that I would face future challenges with courage, I wasn't trying to invite them! Yet, this week a new one arrived.

I spent Monday afternoon in the emergency room as I'd developed a rash over the weekend which I assumed was an adverse reaction to the new drugs I was taking. It turned out to be shingles. Great!

Apparently the chickenpox virus (varicella zoster - my medical vocabulary increases by the week) lies dormant in the body until the immune system is weakened and then comes back as shingles. Of course in my mind this leads to an image of the virus (below) hiding out somewhere (maybe behind a knuckle or something...who'd think of looking?) until just the right moment, then "RAAAAGGH! Here...have some shingles!"
(This is how everybody thinks, right?)

So, the surgeon called last week to confirm that we should go ahead with the op to remove the second lesion. We met yesterday to discuss the details but ended up postponing because of this week's drama. I'll probably have that surgery towards the end of April. This one is in a slightly trickier position in the brain than the first one, but he's confident that he can perform a clean resection without a high risk of damage to crucial brain tissue. Then, the results of the biopsy will determine what further treatment, if any, is necessary. A couple of goals that I've set myself to aid the recovery are 1) to be back up on the wakeboard before the end of July; and 2) to complete the cycling leg of an Iowa triathlon in early August.

I'll sign off with the boys (typical) views on my shingles rash:
Patrick: "I don't want to see it"
Richard: "It's like a galaxy"- he's obviously still got space on his mind.

Medical update

Blogs like buses...you wait ages for a post and then two come along at once!

I returned to the hospital this week for some tests and consultations and received mixed results.
First, the good news...an MRI scan showed no changes in either of the lesion sites. That means there are no signs of regrowth on the original tumour site and there has been no change to the shape or size of the second lesion.
An EEG test showed that I'm having absence seizures, which the neurologist believes could be coming from the second lesion. Absence seizures don't normally cause outward signs, so we haven't noticed them (although it might explain why I drift off sometimes when Anna is talking about running gadgets!). I've been put on an increased dose of anti-seizure medication, possibly long-term, to prevent more serious seizures.

The scar infection that I mentioned a couple of weeks ago hasn't quite cleared up and the surgeon is still suggesting that he operate to take out that section of of skull. He is basically saying that because we took out a piece of skull and then bombarded the area with radiation, the bone didn't have a chance to heal, and now due to the chemo my immune system is too low to fight off an infection. As I pushed back a little, he agreed to try and treat with stronger antibiotics for a couple of weeks and see if it clears up. However, I am starting to come round to the idea that the surgery and subsequent reconstruction may be the way to go. The operations would be a few weeks apart and I'd have to wear a helmet in the interim.

To be honest, I started to get a little down the other day about these further complications and the fact that the other lesion still hangs in the background. A long drive cleared my head and it comes down to this: I have one goal in this thing...to live as long as possible. It's as simple as that. So whatever it takes, whatever surgeries I need to have, whatever nasty drugs I need to take, I'll do it. I'm not trying to appear 'brave', I just don't see an alternative.

St. Augustine, Pt. 2

When I said last time that I'd update "early next week", I obviously meant late the following week!

The rest of the trip to Florida was fantastic, with further visits to the beach, a climb to the top of the lighthouse, a horse and carriage tour of the city, and a great afternoon at the alligator farm.

Two of the highlights for all of us were the day we rented scooters and a visit to NASA's Kennedy Space Center. For those of you who don't know, we used to own a scooter in Barcelona and still miss zipping around on such a fun mode of transport. So, we couldn't pass up the chance to relive the experience and take a look around St. Augustine with the wind in our hair!

Kennedy Space Center (that's how they spell it, rightly or wrongly!) was an amazing day. There was so much to see that if we'd gone earlier in the trip, we'd probably have returned for another visit (the tickets are valid for two entries). We took a flight simulator to experience shuttle take-off on a moon mission; we were able to climb aboard 'Explorer', a full-size replica of the shuttle; we took a tour of cape canaveral, stopping at the Apollo center which houses the last Saturn V rocket built (but never used) for a moon mission. All of this fueled an interest in becoming an astronaut for Rich. Patrick wants to be one of the mission control guys (space travel sounds a bit risky). We also saw an amazing IMAX movie chronicling the discoveries of the Hubble telescope and the spacewalks needed to maintain it. Fascinating stuff.

St. Augustine, Florida

I’m happy to turn this space back into a travel blog for a little while. We’re all in Florida this week and next for a spring break vacation. First, a short medical update...

I should have had the third round of chemotherapy last week but my blood results showed that the platelets hadn’t recovered enough from the last round. Ordinarily the oncologist would have delayed it by a week or so, but as we were coming away for this break she has delayed this round until the day before we come home (Thursday 24th). There is also another issue with the scar from the surgery. It seems to have developed some sort of infection which the surgeon believes could be due to some necrosis of the skull. If that’s the case then he wants to operate and remove the piece of skull and reconstruct it later (sounds like fun!). Our hope is that it’s just an infection that will clear up of its own accord or with the help of the antibiotics I’m already taking. Apart from that, I’m feeling great and gradually looking more like I did pre-September (more hair, less portly!).

So, on to more important stuff... 

I write this from the comfort of a beautiful home in St. Augustine to which our next door neighbours very generously invited us to stay. St. Augustine is a quaint, European-style city on the Atlantic coast of Florida. It’s also the oldest city in the United States, settled by the Spanish in 1565 and still has homes dating back to the early 1800s plus a castle built in the 1600s. One of the things that Anna and I really love about Europe is being able to walk around a town centre - St Augustine and its cobbled streets are perfect for that too!


So far we’ve explored the city, spent an afternoon at the beach, visited the castle, and had lots of reading and relaxation time. In the next few days we’re hoping to get to an alligator farm, Kennedy Space Center, and go for a spin on scooters. I’ll try and update again early next week.

Here’s a shot of the boys enjoying the back yard in shorts and t-shirts.

I’ll sign off with Richard’s take on the trip so far....”this is the awesomest vacation ever!”.

Wrinkles and crinkles

I write at the end of round 2 of chemo and I don't have much to report on that front. It was pretty much like last month - a lot of fatigue and some sickness, but tolerable. It does get a little more difficult as the week goes on to actually take the tablets knowing that they're going to make me feel worse. I just have to focus on the hope that they're doing their work.

I do have some interesting medical tidbits learned last week...

I had a CT scan recently and discussed the results with the oncologist last Monday. One of the things she pointed out was how the swelling on my brain had reduced since the October scan. The steroids have done a great job at bringing back the crinkles (my technical term, not the Doctor's!) that normal brains have.

We also quizzed her a little on which part of the brain might have been affected by the resection and apparently the bit that they worked on is responsible for impulsiveness. So she said I might be more prone to swearing than in the past and impulsive behaviour. I was wondering why I've taken to buying Manolo Blahnik shoes recently.

One thing I noticed just looking in the mirror the other day was that the wrinkles on my forehead have faded. I can only imagine that when the surgeon performed the second op (see this post) he pulled the skin on my face back a touch. Result! Free face lift with every procedure!

Last piece of good news is that my hair is slowly starting to return, which makes me think it must have been the radiation and not the chemo that made it fall out. That said, it didn't stop Richard from wanting to change my profile on the Wii to a character with significantly less hair! You can always count on Rich to keep it real.

I started work again last month and it's absolutely great to be back, connecting with colleagues and putting my newly crinkly brain back to use. I think I'm pretty fortunate to have a job that I love and, although my wings have been clipped until after the summer, I'm happy just to be more active.

I'm having a few days vacation next week to spend some quality time with my big sister. No doubt I'll have some fun stuff to report next time!

Until then, take it easy.