Good Morning…
So we did it….da da da daaaaa
So now what????
Well, after seeing the radiation specialist and talking with my Oncologist yesterday, we wait and we recover…that is my next job… The radiation will continue to work and cook for the next couple weeks and the exhaustion will really begin…I will start with lots of tests in 6 weeks or so depending on my recovery rate. My biggest task will be getting off the steroids and that is going to be a day to day struggle for us. Constantly judging my abilities in a day and seeing if I can handle the swelling or de-swelling of my brain.
So, as with any great plan we have ideas but it will ultimately be me listening to a body and a controlling spirit... Not a good combo, but I will try. See inside I’m the same, I am Hope Stone ramped up on all kinds of creative idea’s and things to do and then there is the real Hope Stone right now who even thinks rolling over is a bit of an effort that I could wait an minute more before I really need to comply.
So how to recover??? We think the best thing is to run away for a few weeks to my lovely island on the coast, yes my Peaceful Red shores of PEI, surrounded with family, love and just the sweetest peace in the world… So we have very lose plans, because we can’t really have a plan, so the official one is that we will leave this week and drive slowly out me, Brad, our Ruby dog and of course my Zazzy cat…
I stated a little while ago that I am choosing to live with cancer and not die that way, so I have a lot of living to do. I have a PEI bucket list to work on and I’m going to, come hell or high water, even if I have to pace myself some how. And course my wonderful cousin @Shari jarvis knows none of my plans but they pretty much all involve her…teehee shenanigans galore… So I want to do a real nice spa day the lunch and facial and the whole nine yards, to treat me and her like queens for a day. I’m going to take a few cooking classes at the PEI culinary school, as I love to cook, I am going to Chef Michael’s in Fortune Bay for an evening next week at his home to talk and enjoy some of his recipes and stories on the island. I want to do a little touristy stuff which we never do when we are there. Brad was hired out here for the summer as a sound tech and to go out and do all the island festivals, unfortunately that was all put on hold when this tumour stuff came out but they still want him badly and we need the money so off we go for how long we can. Don’t know but we are taking a step forward. I have so much life inside of me and I want to live it, laugh it and feel it course through my veins…so whether this is 1 week or 6 weeks this is the official loosey goosy plans.
Now the plans on the home front… different story…
As you know we have finally decided to reach out the community for some help with fund raising a staggering amount of money for the next drug I need. This is really hard for me, I am a giver and not a taker but many of my friends and people I love feel this is the direction we need to go and so here we go. I will need help a lot of help as I’m the one to stay out for it and let other people do the job, that’s not going to be a personal hell for me much!!! Remember I am the queen party planner the organizer the go to kind a gal you need it I’ll do it, so how do I go away and let others do this…I have to I don’t know how but I have to.. We have asked a real firecracker to take the lead and boy she went running with dates, people, and excetera. So details are none existent except it will be in October, and we are deciding how best to get big bang with not draining too many.

The first thing on the to do list is meet with my MP this afternoon and just find out how do we go about getting this drug passed in Health Canada. So I am meeting to discuss the process what if anything can be done to speed it up and how I can enlist many of you in phone calls or email campaigns to get this done as quick as possible. Once the drug has a bin number here we can then start getting funded through grants, trillium, etc maybe even our insurance company again but as far as I understand our only other option is to get the doctor in the state a go buy it at the pharmacy $13,500 for 1 month and once I start there is no going back. Now I am in the learning phase so let me find out all the ins and outs first. I want to be informed and armed the best, I can. I’ve also been told that I can apply to OHIP for out of County treatments, but that is quiet a process and I don’t think I will be covered as I am looking for drugs not treatments, but we will track that puppy down also. We have the email to the person at Novartis who is in charge of the drug to see if there is anything that they can do also for us as a compassionate course so we have a few things to work on, but in the mean time we feel we need to be prepared with some good old hard cash because really in the end that’s most likely depending on time frame to get the goods.. The government at last understanding said it should take up to 6-8 months for this approval not acceptable. There is a link to the drug approval in the states and just a bit of info on it ...
So we will be asking for some people to get their faces on and chew down the government once we got the facts…
I have been bombarded about getting my blog published and we feel this might be a way to get some funds, so the first thing I need help with if any of you or if you know anyone is to help me with the blog. I have it all in one word document but I need some proofing and editing and looking for this to be done right away, so if anyone can help this is the first step.
Secondly, once we have an idea with some fundraising we are going to be looking for auction items and silent action items services etc. Thirdly idea’s please. We are trying not to hit just one sector, so if anyone wanted to do a golf tournament, a fashion show I don’t know I just need ideas and people to run with them. We have set up an online fundraiser donation page, as cash is what cash is. I would ask that when we need help that you would be generous enough to post and repost, this face book is powerful and I plan on using it and you as much as possible…
I am humbling myself please help me live longer and help me be able to give back, that’s what really makes me happy, like I have stated before there is an awful lot of love of life left in me and I am not ready to go with out one hell of a fight.

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