Tuesday, June 26, 2012

Calm after the Storm

When your prognosis takes an unexpected and detrimental swerve off a perceived existing course it takes awhile for you to take stock and collect yourself. Many things swirl around in your storm cup (mental, medical and practical) and there is urgency in resolving or at least prioritising the issues. For me the issues were many many and included;
  • What are these new pain issues; I am experienced with pain; but this is new, uncomfortable and debilitating; Is it going to get worse?
  • I can no longer work; I like business, my customers, colleagues, business networks etc; I am not ready to leave my profession yet but I must and now.
  • Getting the out of control medical situation in control; dealing with the resulting and horrid side effects. Restarting or facing new procedures is always difficult and I don't like it.
  • They've started using the words 'palliative' care and that I'm now allocated to the 'hospice' support team. I understand why and I really like the people and care that I'm being given but I don't like these words and the implications. My hospital team, whom I respect, have made a decision on likelihood on curable outcome. There is always hope but I also want to be prepared.
  • How will I talk to my children about all this? 
  • What are our priorities for living now, mid term, how much time?
  • Whom are my support team I need around me; who are the fun team?
  • What will I have for lunch, food is very high on my priority list at present thanks to some medication.
I have not separated Kat from my storm list, we are so interconnected; although our issues are different, "You are going ... But I am staying" and we've been processing this all together which has been extremely helpful.

Even Dolly Parton threw in some random and helpful input during the week:

We've ended up in a pretty calm and good place. Lots of talking and gaining acceptance of current situation; making plans for doing some fun stuff; plans for getting some practical things sorted; plans for getting through next chemo better and more smoothly, no time for waste; lots of time for reading and learning and becoming stronger in faith. Lots of time allocated for nice people and hugs.

Friday, June 15, 2012

First Round

Gazza into third day of chemo..Not as bad as last time so far. The doxorubicin seems to have been the culprit for more extreme side effects last time and hes not having it.
Seems to be less nausea and more sleepy. Although in saying that gaz feels pretty yuck. I am pleased he's sleeping through it. He is more knowledgable about his drugs..anti nausea etc and takes control himself which is good and asks for them.
Home tomorrow. Raining buckets of water here, I have the fire on early, hoping to bank it up and come home tonight to a warm house. Zach got some wood in and I am cleaning and organizing house after a chaotic few weeks. Time for a winter clean up and chuck out I think. Lots of accumulated clutter that does not add to required ambience.

Thursday, June 7, 2012

Good Week: Bad Week

What started out as a routine monitoring scan with my sarcoma and dealing with pain from a perceived muscle spasm issue has resulted in a few days in hospital and a whole lot of new information, mostly bad.

The mid to long term outlook of my sarcoma has always been been poor but the speed of progression and biology indicated that it was slow moving and this was very good, e.g. the single and only tumour in my lung they cut out in November was just .5 cm (after maybe 3 years growth); with slow growth they have lots of treatment options. When tumour pops up they just spot radiate/laser or surgically remove. Many people last 20 years with this approach. When you get metastasis spread (secondary cancer) of synovial sarcoma it seems difficult to cure but they are very good at delaying any spread.

Arrows identifying some of the Mets, round cricket ball
likely cause of pain issue
Bottom line; I now have multiple new tumours in and around both lungs, one very large 5 cm in right lung (See Pic) which is causing the pain issue and is also starting to impact breathing. The main issue is its aggressive nature and speed that this is developing and the limited options for treatment.
They've ruled out surgery and I am in palliative care; the aggressive nature of the tumours has opened one door on a chemo (Ifos) regime which is good at attacking fast growing tumours; I'm expecting to start this treatment next week. There is an outside chance of cure, but most likely this will just buy us some time. 
Heathier lung - Dec 2012
The medical team have done a great job settling things down and getting me on a new pain regime. Its still uncomfortable and I'm am very limited on what I can do physically, but its manageable and I'm enjoying life.  They believe the pain is being caused by the large tumour pushing the lung lining against the rib wall and catching nerves which are on the inside of the ribs. I do believe in miracles and if I'm due one I'm hoping it will come soon. 

But I have things to do and the fat lady hasn't started warming up her singing voice yet.
- Family holiday, assuming treatment goes well, beaches, heat, water and piƱa coladas sounds like a good idea, or maybe a holiday or two in a central otago or otematata crib.
- Family wedding, Nephew Tom and Jen are "going to get married ", thats going to be so much fun
- Few old mates incoming for property makeover (& a few beers and tunes)
- and finally my favourite thing; just time with Kat, the kids, whanau and friends.

How am I feeling?  Its a bit surreal, we've grieved and been sad at many times during this cancer journey. We knew the odds weren't great but certainly didn't think that it would accelerate like this.  I want to be in the best possible state (mind, body & soul) to again fight and overcome if possible. My Christian faith is providing me with a strong base and comfort as we face the next few months. Please add me and our family to your prayers. 
Life is such a wondrous and precious thing.

GARY from KATANDADLS Blog reposted for Gaz x

Ok so I havnt blogged in a while and the reasons are..I have started my new job and feel a little time poor, although the hours the great and the job is good and the staff are supportive.
I catch up on everything else on my days off and even thou they are plentiful they are never enough..how does that work?
I have been distracted lately waiting for Gary's scan to happen.The week before its almost impossible to concentrate on anything and we just circle around things. Furniture, the dog who seems to always be close to our feet, each other and big highlighted circles appear around around thoughts and words that seem so clumsy and inadequate.
This time it was harder, as it was the sort of scan that defines what happens next.
In between scans when news is good we live in a bubble. An enclosed space of protection.
This weeks news changed all that.
Gary has metastases throughout both lungs and of the size that they are impacting his functioning and breathing and he is in significant pain. The news from the scan came the same day Gary was experiencing pain. His back and abdomen went into spasm to protect his lungs as his body was reading signals that this needed to happen.
He has been into hospital and the pain is sorting itself with some new drugs. He is currently working at home and we have been cuddling and playing lots of scrabble.
I can write this now as I feel calm. People are praying for us. I know this because you can feel when the prayer kicks in..it is the most amazing feeling. I think it is a bit like Gary's horse tranquilizer he was given when he first went into hospital. Gary and I decided that prayer anesthetizes our heart pain. The whole world needs more of it.
We are both looking forward to chemo which seems a contradiction in terms but it is an extended life life for Gaz. It will shrink the tumours and give him quality of life back. Gary really is an amazing person to be with. He is funny kind supportive, did I say kind. His spirit is such a shiny button.
When I was small, my nana used to give me the button tin to sort through and count I always went for the shiny ones and made treasure piles imagining how I might use them. She taught me to sew and I made soft toys with button eyes.
When Hana left home I was so sad, I went to the salvation Army shop in Mosgiel and sorted buttons on the beds at the back for about an hour..it made me feel alot better.
I feel better when I am near Gaz than away.

Monday, June 4, 2012

Oasis of Good Health : Oasis of Ignorance

Scan time again and I am due to get the results back of a scan last week. This is the first scan for 6 months and since my last surgery. We are a bit more anxious than normal.

We've had a wonderfully late Summer and Autumn; nothing much of note, just enjoying living life and plenty of family time and good and interesting work balance.

Kat has resumed working in Mental health as a registered nurse and I am very proud of her. She seems to be working with some nice people and doing well.

I am a little behind in keeping my blog up to date and about to rekindle communication.

Back soon...