Gazza update

Gaz has had a comfortable night, still struggling with some nausea but slowly getting there.Pain control starting to be more effective.Very drowsy with all he is taking.He is having oxygen to help him breathe which he likes as he is struggling without it.Today he is going for a scan to see were and if some fluid drainage is appropriate.
Plan at this stage looking ahead the week is to keep stabalizing him with anti-inflammmatories, pain meds and IV fluids.
Gary as usual is very inclusive with people and so lovely to be around. He is getting very tired and prefers short visits. He is loving his children who pop in frequently in-between their jobs and activities and cuddle him.
We are not sure where this going. Gary has been approved for Votrient but at this stage it has not as yet appearred.This appears to be the only option for a treatment that has a possibility of shrinking the tumours and reducing the effect of them on Garys lungs.
It has happened so quickly it is a mix of surreal and real.Too hard. Gary has never done anything in his life by halves and true to course this disease is doing the same.
We will keep posting
love love love

Holiday End

Unfortunately my 4 holidays (Large High Country farm, Stewart Island, Queensland Australia and Otematata) in the last 2 months have come to an abrupt end. I'm not big on bucket lists but we have certainly ticked off many neat activities, lots of swimming, hand feeding kaka, sighting a saddle back bird, lying in field with Kat and watching wild fire and lighting. It's been a lot of fun. Today was the last day with Kat needing to get back to work but but alas my body has packed up and resulted in a rushed trip back from Otematata to Dunedin Hospital emergency department. My left lung is playing up causing a lot of pain and restricting breathing. So I've been sitting in ED most of the afternoon being treated with pain relief whilst they explore what's the problem item accumulated in lung (blood, tumour, infection) I'm due to go for a CT scan shortly which will confirm the issue and treatment option. I'm being admitted and it looks like it will be a late night before we have this sorted, ill post more tomorrow's and update outcome. G

Spots on the move

Yesterday was scan day and unfortunately it showed the metastise spots in both my lungs were growing and on the move again. This development is not unexpected although disappointing that it has happened so soon plus you always hope that the little buggers will just disappear. We've been enjoying a couple of great months of relatively good health and good times. Unlike other times I don't feel ill but we know that the situation will change quickly unless we take some positive action and start an effective treatment that will nip the progression in the bud.

We think the most effective treatment option for me at this stage is Votrient/ Pazopanib. Votrient has only been recently FDA approved in the USA and is a smart new drug which targets the Sarcoma Cancer cells; it's not a curative treatment but interferes with the growth and reproduction of the cancer cells and slows their spread in the body.

Unfortunately this very new and niffty drug is not funded by Pharmac in New Zealand; but very fortunately for me GlaxoSmithKline have decided that I'm a good candidate to be provided the drugs on compassionate grounds. I still have a few hoops to jump through to get the drugs but very excited about having this effective option. I suspect the 'compassion' is more of a marketing exercise with the large Drug Company showing off their new drug and how clever it is. But whatever I am extremely happy to be given this option and the generosity and I will endeavour to do my part and live a long and happy life and sing the praises how effective this treatment option is. 

Reviewing a dozen individual cases on our synovial sarcoma online forum it is well regarded and the drug is very well tolerated with few side effects; for some it has had very positive impacts, for most it has brought quality time for a few months, for a few it has no impact. The advertised efficacy is that it has extended life by 3 months compared to no treatment. Such where things are at, I am very happy to take those odds. More about Votrient here.

I need to have a few more scans and tests and expect to start treatment early in new year. 

Merry Christmas 

Gary

Me and a Flamboyant Tree, Queensland Dec 2012

The Best Birthday Present

Yesterday was my birthday and untimely it started with a visit with my Oncologist. Historically and generally my doctors contacts are negative i.e. you're dealing with the progressing situation of your disease or the full on procedures or side effects that you have to endure. But yesterdays one was very positive and I came away with the feeling that we are creating small miracles here.... Backstory In July things had gone pear shape and I had many many aggressively growing tumours in both lungs, plus some large ones causing pain and breathing difficulties. Our treatment options was limited to chemo (Ifosfamide) with expectation that this was unlikely to be effective. So timewise and in theory things should be a looking pretty grim for me about now, but fortunately we've rewritten that story and have a different or at least extended version.

Earlier in the week I had some more imaging work done and yesterday my Oncologist took us through the timeline of images and showed how the cancer had regressed. The large tumours were essentially gone or shadows of themselves and an area we called the "milky way" of many small tumours has got significantly better. The expectation is that it wont stay this way and that the tumours will get a footing and start progressing again, also unfortunately I am at the end of the road with Ifosfamide and although we talked on some other treatment options there is doubt on availability and effectiveness.

But for now I am very thankful for a great birthday present and looking forward to a long hot summer.

Zach and Macca with Birthday Brasier 

 

Romance in our Garden

Of late Ive been spending plenty of time in our lovely garden, resting, reading and puddling making a deck for Kat; during which I've noticed a vast amount of romance occurring in our garden last week & I spent some time trying to catch some pics. The three most noisy and interesting culprits i.e. birds were:

Firstly the Grey Herons who were making a commotion in the bottom tree of lawn, lots of feather frilling, squawking courtship going on there.

Secondly the Tui, I had two of these doing formula 1 around the garden. I couldn't get a good pic, they were going so fast and so borrowed this pic off the net (Tui explosion in city) . 

and finally my favourite:

The Riroriro (Grey Warbler) which Ive only discovered this year. These  little wonders live in most kiwi gardens and make a very distinctive ethereal noise every spring.  They are difficult to spot mainly because they are very small and don't stay in in the same place for long. But they are easy to hear, very loud and distinctive song. You may find that like mine that they are singing outside your window right now and that you've never noticed them before. 

Spot the Riroriro here (Grey Warbler)..

There he is Sporting Zachs new haircut 

Smaller than sparrows, a little like waxeyes

 Fliting and calling for its partner.

Bottom line... Its amazing what you will spot and learn if you take the time to notice.

    

Cruising with Zach

Zach is our youngest child and is a charming 16 year old. He has always been great with people; he is fun with a good sense of humour with strong faith and integrity. He's already 6 foot 3 inches tall and continues to grow physically and personally and growing into a very nice young man; during my cancer journey he has been the muscle around the house, picking up additional responsibilities and generally doing jobs with a smile and good attitude.

Oct 2011 pic Giving mum a hug

Zach has just obtained his learning drivers licence and I've been teaching him to drive. Last week we had a great boys trip to North Otago which provided us with some good 1on1 time together but also allowed us to immerse Zach in some good driving practice. It was a lot of fun and a successful trip on all fronts. A highlight of the trip was cruising around in a mates classic cars (see pics) - cheers TC.

Its been a joy to watch and participate in Zach's growing up and life to-date. An anxiety you have with terminal illness is that you're not going to see how it turns out with your children including participating in key events in their lives and influencing better outcomes when they need support. I guess its another one of those areas that you've got to learn to let go and have trust that all will be good; Plus still lots of time yet.. 

2011 Dodge Challenger

1963 Buick

Zach License to Drive

Chemo Cloud Clearing

3 weeks post chemo and the cloud is clearing and I'm returning to better health. I got my pick line (catheter used for administering giving chemo drugs) removed this morning and I have no immediately pending hospital appointments, which feels great and a sense of freedom.

The chemo treatment has been very successful and it blasted the tumors in my lungs which is fantastic and beyond our and our oncologists expectations.  Im likely to be called in for a CT Scan in the next couple of months which will confirm how effective the treatments been and how many tumours remain; it will also be a benchmark to monitor how active the remaining tumours are.  But for now we have an oasis of freedom and setting up for a wonderful summer.

Pear tree in backyard looks like it will be bountiful.

I've been pretty sick and rundown after chemo but I'm progressively getting energy and motivation back. When I started feeling better post chemo I started charging around like the energizer bunny but soon realised that was premature and this week have been far more restful with my nose in a book or watching some therapeutic sports TV or good movies.

I find chemo treatment so tough, as well as all the medical side effects it also robs you of energy, your vitality and kills your "Joile de vivre" & motivation. But it also kills cancer and you need to keep reminding yourself about that.

We've got some nice micro trips coming up with friends and family:

• Currently meant to be buzzing around in a helicopter and deer stalking in a remote mountain range; but postponed due to spring storm coming through.
• Zach just getting his learning drivers license, so taking him on a short boys trip next week to North Otago. 
• Plus short trips in next month planned to Christchurch and Wellington to catch up with friends.
• Kat and I planning a more exotic trip over summer to somewhere hot with good beaches, maybe a Pacific Island (Rarotonga/ Samoa / Tahiti) or Queensland.   

Were hoping that my health holds up and we have a good summer.

Sorry for not posting, energy levels have been so low and Ive been hiding away; but now feeling a lot more motivated to communicate.

Regards
Gary
    

Good signs

Gaz in the kitchen cooking himself sausages and planning trips with friends and his boy.
Still doing the morning Quiz and getting most of it right.
Ordering wood for the Studio deck and deciding on what wind break to use..

Final Cycle of Chemo

After 5 cycles we've decided that we have done our dash and starting the final cycle of chemo today and will be in for the next 4 days. The chemo has been very successful and knocked back the large tumours significantly and eradicated many of the smaller tumours; saying that there are still many (Dozens?) smaller ones visible and its likely that some of these are less sensitive to the chemo and still active. The advice is that these will spring away once treatment finishes and this has just brought us time but we will wait and see.

As well as knocking the tumours it has also knocked me around and part of the decision to stop one cycle short is part on quality of life and getting back to best health so we can enjoy the summer.

So off to the hospital for another dose...

Spring Picnic with Sister Sue and Dog Mango