St James Walkway, Lewis Pass - New Zealand

Starting the St James Walkway after a fresh dump of snow the night before.

Trekking again (Click photos to enlarge)

The Snow-covered NZ Alps stretch out to the North as
we approached the S Island of New Zealand

Cheryl and Barry walking through the flowering gorse at the beginning of
the Silver Peaks track near Dunedin (photo used with permission of Dianne Hendry).

Unfortunately, the Silver Peaks track deteriorated
into a slippery bog after a short distance (photo used with permission of Dianne Hendry).
















The weather forecast was for clearing showers, however what we experienced was just showers with no sign of clearing. As there have been a number of rescues in this area recently, we took the cautious option and decided to turn back after we encountered high winds on the ridges near pulpit rock (photo used with permission of Dianne Hendry).


Cheryl and I are once again in New Zealand to do some more trekking in what must be one of the world's best bush walking locations - The South Island of New Zealand. It was tremendously exciting to see the Southern Alps as we approached the coast of the South Island. We are here to do some more trekking in this bush walker's paradise.

Our good friends Barry and Di were at the airport to greet us. The original plan was to walk the Milford track before the official season started on 27 October. Unfortunately, recent heavy snow falls have created avalanche danger that has closed the track. So instead we attempted a local Dunedin walk to Jubilee Hut in the Silver Peaks area.When the weather forecast was for clearing showers we set off on our walk. It was pretty muddy for a lot of the way to Pulpit Rock and the showers continued throughout the day. Approaching Pulpit Rock the wind was similar to what we had encountered in Patagonia, blowing us off balance and absolutely freezing! After a quick conference we decided that the safest thing to do was to return to the car while we still had daylight.

Over the Radiation Hurdle and the next one looms large ahead

It has been a tough couple of weeks since I finished the 30 days of Chemo/Radiation therapy. I now have a one month break with no therapy to give my body a chance to recover. I thought that this would be an easy time, but in reality I'm finding it very hard to remain positive because I find myself in a kind of limbo. When I was working through the radiation I guess I had a clear goal and a daily routine that kept me going. Now I find that I am worrying too much about the future, about the medical expenses and every little thing. It's getting a bit out of control and even though I know it is irrational, I can't stop doing it. I have even been waking at two or three in the morning and have to read a book to get back to sleep. The shrink thinks it is a normal response under the circumstances and put me on the higher dose of anti-depressant earlier this week. I am slowly calming down but it will still take some time to return to normal. It 's another hurdle to get over so I'll just have to hang in there and sweat it out I suppose. I wonder if anyone else has experienced this after Radiation therapy?

Radiation Therapy Completed

On Friday I finally had radiation dose number 30, the final one which completed the total dose of 160 Gray of X-ray radiation exposure. In the photo you can see my positioning mask tucked under my arm. It all went remarkably well apart from a few episodes when I ran out of the anti-nausea drug zofran. I now have a one month rest from the chemo therapy and I am really looking forward to that.

The end is in sight- Only 5 days of radiation to go

As I approach the final week of the six week combined radiation and Chemo therapy, the patchy hair loss from the radiation is now obvious as you can see in the photo. I must say that this this hair loss gives me some comfort that the therapy is being effective at killing the fast growing cells. If the hair cells are dying, that makes me more hopeful that the tumour cells are also dying.

Climbing again at Kangaroo Point

Now that I have the nausea caused by the combined chemo and radiation therapy under control again with Zofran, I have found that my legs and arms are still strong enough to return to climbing. So, for the last two Wednesday evenings I have returned to the regular gang of climbers. Because there is still a small chance of having a seizure I have restricted myself to climbing only. Not belaying, because it would be too big a risk to have me controlling the rope for someone else. I completed some of the easier climbs but Kiwi, the one pictured here, was a bit too much for me at this stage. I fell at the crux and did not have the strength to complete the route. However, I'm sure it will come back after a couple more weeks of practice. It's fantastic to be back on the rock and it feels like I'm applying Lance Armstrong's "livestrong" motto. I think it should be more than "livestrong", "liveintense" seems more appropriate because you need to take your mind off the tumour and live life as intensly as possible in these circumstances.

The fine art of avoiding vomiting

I have been learning a lot about the art of anti-nausea over the last five days. On Thursday I ran out of the anti-nausea drug zofran and had to switch to Maxolon instead. Up until now I have been lucky enough to not have any vomiting problems. But Friday's visit to the radiation clinic was another story and taugh me a new lesson. While waiting in the waiting room I started to feel extremely unwell and while sitting there I was planning my emergency escape route if I needed a hurl. And sure enough, next thing I know I was sprinting for the front door then the garden. After suffering all weekend I finally got to talk to my oncologist this morning and he suggested I see my GP about getting a prescription for some more Zofran. After a very queasy morning, and a lot of help from Cheryl (she's an angel!) we finally got hold of the Zofran and the change was miraculous! Just one tablet and suddenly the nausea all went away! I don't know what it is about that drug but it sure works better than Maxolon for me...

only 17 days to go to some more good times

Here is a photo of the pretty pattern I get imprinted on my nose each day after 10 minutes of being squashed by the face mask.

I'm starting to wonder if this blog is really helping anyone? It started out being some positive stories about living with a brain tumour (something you do not normally read on brain tumour blogs), but since the second recurrence I'm afraid the harsh reality of it all has brought me back to earth and here I am reporting on surgery, chemo and radiation instead. However, that said, after completing the thirteenth day of radiation therapy on Friday, it means that there are now only 17 days to go before I get back to some serious living and reporting on something more positive! By then, I hope that the temodal and radiation will have done the job and cleaned up the tumour cells remaining after the surgery. This time I'm hoping for at least five years before another recurrance. There are so many walks to walk and cliffs to climb!

Flinders Peak - first mountain since surgery and the start of 'Third Life'

Scarlet Honeyeater at the Flinders Peak picnic area

At 679m Flinders Peak is not very big, but it does make a great day walk. Kev McCloskey organised for a group of eight to do Flinders yesterday but unfortunately he came down with a virus during the week and out of consideration for the fact that I have just completed my seventh day of combined radiation and chemo therapy, Kev (and Karen) very kindly opted to stay at home. The remaining six of us met at the foot of the mountain after Gary and Catherine generously picked up Chery and me on the way (I'm still not driving because of the risk of a seizure)



Cath, Alan, Cheryl, Catherine and Gary on the way up
Flinders Peak


It was fantastic to be out in the fresh air again and my legs felt very strong up the steep slopes and rock hopping over the rocky sections, so that was pleasing. Especially as it took three months to get back to normal after the last craniotomy and it has only been a month since surgery this time. There was an in-depth analysis of the correct way to adjust for magnetic variation on the way up (do you add or subtract?). Time passed very quickly with our chatty little group and before we knew it five hours has slipped by and we were back at the cars. Thanks guys for a much needed lift of spirits. An outdoor experience like that is about as close as I come to being spiritual!




















Me and Chery on the summit with my home town
of Beaudesert in the distance behind us

Drugs, drugs and more drugs!!!!

My daily drug intake has steadly increased over the last couple of months to the point where I now take the collection shown in the photo each day. The worst one is the Temodal which must be taken on an empty stomach and you can feel it sitting in there fizzing away while you wait half an hour for it to get into the brain and do its thing.

Today's good news was that a blood test showed that after five doses of combined chemo and radiation therapy, my red cell, white cell and platelet counts are still fine.

Radiation/Chemo Therapy 1 down, 29 to go...

This is a photo of Cheryl and me outside the Premion radio therapy clinic at the Wesley Medical Centre yesterday when I had my first dose of radiation therapy using X-rays to kill the remaining tumour cells left behind after the surgery. I am holding a bag containing my supply of the chemo-therapy drug Temadol, which is used for brain tumours (although it is usually used for malignant tumours rather than benign tumours like mine). Unlike most drugs, Temadol has the ability to cross the blood-brain barrier and get in there where I need it to do its job. It also has been shown to make tumour cells more sensitive to death by radiation, which is why I will be taking it during the radiation therapy. It was quite an experience having the face mask that I described in a previous post, clamped down hard on my face. It was so tight it was squashing my lips against my teeth. I tried to get a photo of it, but the nurses asked me to get permission from my doctor first. Maybe next week I'll get one.

Ready for Radiation

Yesterday I visited the Premion Radiation Oncology Clinic at the Wesley hospital to attend a "Planning" session which really turned out to be a setup session. They had to make a mask of my face which will be used to ensure that my head is positioned in exactly the same position each time I get zapped with the X-rays from the radiation machine. The formation of the mask was actually a pleasant experience as they pressed a warm soft mesh onto my face, it was a bit like receiving a facial massage! The image I have palced to the left shows an example of this process. I will be receiving a treatment that is called Conformal Radiation therapy (see http://www.medterms.com/script/main/art.asp?articlekey=13504) using five beams.Yesterday, after the mask had set they performed a CT scan of my brain and this scan will be merged with an MRI scan that was done later in the day (that is because the MRI shows up the tumour better than the CT). So now I am all set for the first dose of radiation scheduled for next Thursday at 10:30 am. Hopefully this therapy, which comprises 30 of these fractional doses, will kill off any tumour cells left behind from the surgery.

First Bushwalk since surgery

Last weekend Michael and I went out to White Rock at Redbank Plains and did the 7km return walk to White Rock. It was such a relief to get out of the city and do something slightly more energetic again. Unfortunately, the sandstone is far too soft for climbing so we had to limit ourselves to just the walk.

Hitting rock bottom

The last four weeks have, without a doubt, been the hardest time since I was diagnosed with this tumour way back in 1993. My resilience was first tested on 16 June when I visited Dr Paul Mainwaring at the Mater hospital - Division of Medical Oncology(see earlier post). The scene in the waiting room there was a huge shock for me. There were50-60 people, most of whom were in advanced stages of intense cancer treatment using chemo therapy and were obviously very unwell. I was sitting there thinking:

"wow! this is the new me - Laurie Barram cancer victim. This peer group is a far cry from the gang that climb at Kangaroo Point on Wednesday evenings that I used to belong to only a few weeks ago..."

Then, the very next day I had an appointment with the Radiation Oncologist Dr David Schlect. Well, it was almost a repeat of the day before, with elderly, obviously very ill patients lining up in the waiting room for their daily radiation treatments.

For the first time, I started to get scared, very scared!!!

By the time I got to see Dr Schlect, I was a mess.

He simply said:

"How are you going?"

That was all it took to tip me over an emotional precipice and next thing I know I was crying like Bob Hawke and hugging Cheryl in desperation.

Luckily, Dr Schlect is used to this sort of thing and keeps a good supply of tissues in his office!

Once I could speak again we talked about what to do about my loss of emotional control and he gave me a referral to a psychiatrist friend of his, Dr Eric Delacey at the Toowong private hospital.

So I visited the "shrink"on 29 June and I must say that I was very disappointed to find out that Woody Allen has been conning us all these years because I can report that there was definitely no couch to be seen. Dr Delacey focused on determining which of three possibilities was causing my depression. Was it a) a normal reaction to having a life-threatening illness b) I had developed a depressive illness or c) due to damage to the right frontal lobe of my brain from the surgery. After I had no trouble with some tests for the latter, he decided that it was mainly just a normal reaction. Regardless what was causing it, he felt that a low dose of anti-depression medication would be the best way to deal with the problem and I was prescribed a half-dose (ie 30mg tablets) of a drug called Cymbalta

My emotional state has certainly settled down considerably now.

Laurie needs to sign off for awhile

While Laurie is continuing to heal physically he has found in recent days that he is still in need of more rest mentally. We are continually being told by Doctors that Laurie will get over this and get back to normal but it may take a month or two so I have banned him from the computer for now. When my old Laurie resurfaces, I am sure he will be more than happy to return and continue telling his story.

Cheryl

NO cure, but there is hope that we can probably slow the bastard down!

A visit to Assoc Prof Dr Paul Mainwaring at the Mater hospital - Division of medical oncology is always an entertaining experience.He always gets excitedwhen I arrive with some research papers that I have read and I always walk out with some homework to do. That suits me fine, as I enjoy trying to understand exactly what I am dealing with.Dr Paul has recently returned from a trip to the United States and He says that there are a swag of new developments in the use of drugs to control (ie. slow the progression of)low grade gliomas like mine. Tonight's homework is to find out as much as possible about the effectiveness and side effects of the following list of drugs:
optiens
Avastin
Pozapinib
Celecoxib(Ialready have information on this one, as David Walker recommended it:-))
Sunitinib
temadol

Craniotomy#3 - Third time lucky

For a blow by blow description of my time in St Andrew's hospital recently. see the blog created by Gary at:
http://brainsurgerynotrocketscience.blogspot.com/

2009 - "Houston, we have a problem..."

It appears that the old oligo is misbehaving! The MRI and PET scans that we scheduled three months ago, after some uncertainty in January, have uncovered two new issues. First, it is clear that the oligo has grown when compared to images from two years ago. Second, it is now touching the Corpus Callosum and if it invades that structure it will become inoperable.

Luckily, indications are that it has not turned malignant.

Updated: 15 May 2009
David Walker at Briz Brain and Spine advises surgery followed by radiation therapy. I saw radiation oncologist David Schlect and he suggests the same course of action. I then consulted Michael Redmond who operated on me in 1993 and again in 2006. He agrees with all that I have been told by David Walker and David Schlect. Specifically that:

• the tumour has grown since May 2007
• it does not appear to be malignant yet
• it will become inoperable if left to invade the corpus callosum
• I should have sugery followed by radiation therapy
• I should act sooner rather than later

Further, he thinks I should be more aggressive with the surgery this time. That means the surgeon would take as much of the tumour as possible even at the risk of damaging surrounding healthy brain tissue (ie neurons). Unfortunately, that also would increase the risk of post-operative swelling which nearly finished me off after the last operation. So it is a case of the more aggressive the operation, the more risky it becomes, but the better the long-term outcome. This will no doubt be the subject of a meaty conversation with David Walker when I meet with him this Thursday to give him the go ahead for the operation.

It has become a bit of a tug-of-war between me and my oligo and right now it has the upper hand. So I need to go ahead with the surgery and radiation as I think that would be the quickest way for me to be winning again. It is a bit of a gamble because the surgery is so dangerous, but hey, I'm feeling lucky!

Updated: 21 May 2009

We have now booked in for the surgery with Dr David Walker. The operation will be on Friday 29 May 2009 at St Andrew's Hospital. Will post further details when arrangements have been made.

MRI scan May 2009 (Click on image to enlarge)

2009 - A big year for sea kayaking (click images to enlarge)

Damiano giving instructions before a first paddle in the surf at Byron Bay.

Cheryl and sunset on Marshall Creek, Brunswick Heads.

The Queensland Sea Kayaking Club at Brunswick Heads, New South Wales.

With Murray on Green Island, Moreton Bay.

Gary took this photo when we were paddling at Wellington Point one afternoon.

In March we launched the Guillemot sea kayak. It had taken John and me 13 months to complete and it was very satisfying to finally get it into the water. It is a very responsive craft and a pleasure to paddle.





John and me beside out creation.

Lots of our dear friends turned out for the launch of the Guillemot kayak.
























John setting me up for my first paddle.

2009 - Federation Peak (Click on images to enlarge)

In February I forgot all about the oligo and went off with my good mates Michael, Karl and Ritcho on Michael's expedition to climb Federation Peak, SW Tasmania. It was certainly one of the hardest walks I have done and the ascent of the peak was quite an adventure. Fortunately we all came through unscathed.

2009 - Lord Howe Island (click on images to enlarge)

We started 2009 with a trip to Lord Howe Island to celebrate Cheryl's birthday. What a place, mountains and coral together, we had a great time walking some of the most scenic bushwalks in Australia and did a bit of snorkelling. Do go if you ever get the chance!

A view across the coral-filled lagoon at Lord Howe Is.

Cheryl and me at the Goat House cave on Lord Howe Is. We highly recommend this walk.

There was a surprise for me later in January when a regular checkup scan reported signs of progression of the tumour. A second opinion suggested no progression, so I got a third opinion from Dr David Walker at Briz Brain and Spine clinic. He organised a PET scan which had a negative result so if there was change it was still probably not malignant. We decided to give it another three months and check again.

2008 - The beginning of the Sea Kayaking interest (Click photos to enlarge)

The report from a followup MRI scan in May stated "Review of the previous study from May 2007 shows no increase in size of the lesion in the right frontal lobe". In other words I got the "all clear"!








Me and John working on the Guillemot kayak


















Half way through the timber work on the Guillemot kayak















The first strip in place on the Guillemot kayak

















Karl starting the abseil on Leaning Peak, Mt Barney
















Michael nearing the top of Leaning Peak, Mt Barney
















The Abseil off the Southern side of Leaning Peak, Mt Barney















Egg rock at Binna Burra which Michael and I climbed

Cheryl in her new sea kayak in the Maroochy river at Cotton Tree.














Drinks with Hector and Natasha, Christmas 2008















Cheryl, Michael, Ethan and Robyn at Cania Gorge














Red-wing parrots at Cania Gorge










Video of paddling at the Cavalli Islands, North Island New Zealand.





Video of the Cape Reinga walkway North Island, New Zealand