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.