My acupuncturist is always bugging me to try and get my emotions out more. He doesn't want me to "stay" there, but to get some of them out, then return back to today. My worry has always been that if I let them out, they might not be able to stop. That's how I felt the last day. Tired, frustrated, weighed down and grey.
Tonight after speaking with Ryan's doctors, I was lifted out of the grey and back into the light. We have a plan now and that feels a whole lot better. They have reviewed his case and agreed that more radiation is not an option, surgery is also likely a no (but will have confirmation in the next week), but they do have one chemotherapy drug left that they are willing to try. It is called CCNU and he did take it back in 1997.
We will meet with the doctors on Tuesday, get the new chemo pills and instructions and he will start that night. It is an oral drug that will be taken once every 6 weeks. It is so toxic that it takes 6 weeks for his body to recover enough to do another round. The doctors can't predict exactly how he'll react. Some patients are a bit tired and some very tired, so we'll have to see.
After the first round, they will do another MRI and check to see whether it's working. About 25% of patients respond to this treatment and those that do see their tumour hold for up to 6 months. Ryan has always done well, so we are hopeful that he will again with this treatment. However, we are still researching a plan B in case we need it, so please pass on any ideas you have.
Yesterday life felt hopeless and one day later, there is much more hope. Ryan is ready to fight and I am not willing to give up either. Cancer continues to challenge our world, but it will have to try harder - we are not giving up that easy!
Merry Christmas to you all and your families, take in what you have and be grateful.
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Another down turn on the rollercoaster
Today we received the news that Ryan's tumour is on the move again. It was shocking in some ways, as we'd finally decided to let our guards down and enjoy that things were going well. Remember two blogs ago - the planning???
The area is about double what is was in October and now it's showing signs of aggression again. They insert a contrast in him that picks up any really fast growing cells and lights them up, there was a polka dotted party going on in his tumour area that we didn't like!
Now what? We have ridden the wave that is cancer all day. One minute we are trying to accept that this ride might be over, the next we are trying to "stay positive" because he's always been the exception and then back down again. The doctors are reviewing his case in rounds tomorrow and then will call us at the end of the day to let us know their recommendation.
At this point it's likely that the last option available to Ryan from them will be another chemotherapy drug. In the meantime, we are researching eastern medicine options and clinical trials. It's time to consider anything and everything. The trick is how to choose an option that lets Ryan "live" instead of spending all of his time "fighting to live" - that's Tricia's wisdom!
Today is a day to absorb, tomorrow will be a day to plan and then the next few days will be time to enjoy our family and blessings over the holidays. We do truly want to thank each and every one of you for helping us throughout the past year and getting us to this point. Please count your blessings extra well this Christmas!
The area is about double what is was in October and now it's showing signs of aggression again. They insert a contrast in him that picks up any really fast growing cells and lights them up, there was a polka dotted party going on in his tumour area that we didn't like!
Now what? We have ridden the wave that is cancer all day. One minute we are trying to accept that this ride might be over, the next we are trying to "stay positive" because he's always been the exception and then back down again. The doctors are reviewing his case in rounds tomorrow and then will call us at the end of the day to let us know their recommendation.
At this point it's likely that the last option available to Ryan from them will be another chemotherapy drug. In the meantime, we are researching eastern medicine options and clinical trials. It's time to consider anything and everything. The trick is how to choose an option that lets Ryan "live" instead of spending all of his time "fighting to live" - that's Tricia's wisdom!
Today is a day to absorb, tomorrow will be a day to plan and then the next few days will be time to enjoy our family and blessings over the holidays. We do truly want to thank each and every one of you for helping us throughout the past year and getting us to this point. Please count your blessings extra well this Christmas!
Saturday, December 19, 2009
The Magic of Christmas
I have been thinking a lot about all of the cards that say something like “the magic of Christmas” and wondering what exactly that means. What it means to me is that feeling you get when you smell your Christmas tree, turn on your lights for the first time, wake up on Christmas morning, see the kids eyes light up while they see whether Santa has eaten the treats they left and this year some more extreme generosity.
I continue to be completely blown away by the generosity of people at Long View and this year was no exception. Around the company, many groups decided to adopt a family. It's a great program that we have locally because you choose what you can afford then you get a list of your family and the kids wishes. Your responsibility is to shop for the gifts and then get wrapping paper. This, along with a gift card to a local grocery, is delivered to the family by the organization putting it all together. This way the parents know what they're giving the kids, they wrap the gifts and they can feel proud shopping for their own christmas dinner.
However, our sales team decided to adopt "one of their own families" in their words and put together contributions for us. This still brings tears to my eyes as I write this. We aren't a needy family by any means, we live in a nice house, I drive a nice car and have some expensive taste in clothes for sure! But on top of that life we are used to, Ryan's medical expenses still climb up. On top of the Avastin there are many other treatments he does and supplements he takes to keep healthy. We aren't sure which combination is the silver bullet, so he keeps doing all of them!
The contributions that were put together from Calgary families helped us for 16 treatments of Avastin and 9 monts of other alternative treatments and supplements for Ryan - absolutely amazing! When that fund came to a close, my boss stepped forward and said that he wasn't going to let Ryan stop this drug because we couldn't pay for it and he didn't want us to have to adjust our lifestyle completely to continue to pay for it. WOW! A GREAT man just doesn't say enough.
It has been a crazy year for our family and last year we honestly thought it might be our last together, but because of the amazing help of everyone around us - it wasn’t and won’t be for a very long time.
Happy holidays to you all, I hope you all get to experience the magic of Christmas in your own ways.
I continue to be completely blown away by the generosity of people at Long View and this year was no exception. Around the company, many groups decided to adopt a family. It's a great program that we have locally because you choose what you can afford then you get a list of your family and the kids wishes. Your responsibility is to shop for the gifts and then get wrapping paper. This, along with a gift card to a local grocery, is delivered to the family by the organization putting it all together. This way the parents know what they're giving the kids, they wrap the gifts and they can feel proud shopping for their own christmas dinner.
However, our sales team decided to adopt "one of their own families" in their words and put together contributions for us. This still brings tears to my eyes as I write this. We aren't a needy family by any means, we live in a nice house, I drive a nice car and have some expensive taste in clothes for sure! But on top of that life we are used to, Ryan's medical expenses still climb up. On top of the Avastin there are many other treatments he does and supplements he takes to keep healthy. We aren't sure which combination is the silver bullet, so he keeps doing all of them!
The contributions that were put together from Calgary families helped us for 16 treatments of Avastin and 9 monts of other alternative treatments and supplements for Ryan - absolutely amazing! When that fund came to a close, my boss stepped forward and said that he wasn't going to let Ryan stop this drug because we couldn't pay for it and he didn't want us to have to adjust our lifestyle completely to continue to pay for it. WOW! A GREAT man just doesn't say enough.
It has been a crazy year for our family and last year we honestly thought it might be our last together, but because of the amazing help of everyone around us - it wasn’t and won’t be for a very long time.
Happy holidays to you all, I hope you all get to experience the magic of Christmas in your own ways.
Thursday, December 10, 2009
Life list checks and planning for the future
Christmas sneeks up on me quicker and quicker each year. This past month I took advantage of everyone's good health and decided it was time to check some things off of my life list. Tricia and I finally got the chance to go to New York together. It was my first time there ever and I was most excited to finally see where Tricia lived, ate and hung out while she lived there. I was really surprised when I was there how much I felt a part of the "big lights" in New York and not like a tourist and also how safe I felt. We had a surprising number of celebrity spottings - mostly due to the fact that Tricia had us staying at and eating at the places where they were. I was only half a day in before I was already talking about us making this an annual trip.
Next the family went out to Kananaskis for the Long View christmas celebration. Talyn wanted to live in the pool, I wanted to casually stalk the actors staying there - only a first name is needed - Lenardo and Ryan got to relax and play some poker. We don't have any family that lives here in Calgary, but Long View has done a great job of filling that gap for us.
The following weekend, my mom, Talyn and I all flew to Toronto for Breast Fest Film Festival and for the premiere of the documentary I was in. Growing up, I always wanted to be famous and perhaps act in a movie - in that dream having breast cancer wasn't a part of it, but I'll take what I can get. One big check on the Life List!
Then Ryan, Talyn and I enjoyed a week in Mexico back at the resort we went to 2 year's ago. The resort continued to impress us and Talyn made some new friends there - as did we. It was funny but most of the people we hung out with were from Canada. The kids were so close that when they'd see each other at breakfast or lunch, they'd ask if the other was going to "THE club" later? That's what they called the Kids Club!
In Mexico I had some time to relax, re-charge and think about the past few years. One of the biggest things I realized is that ever since my first diagnosis in Fall 2006, our family has stopped planning for the future. It's as if we are living like the future isn't a good one for one or both of us and so there was nothing to plan for. It was a year ago today that I got the terrible call from the hospital that Ryan had had his seizures and our lives took a really hard turn.
In just one year, Ryan is doing so much better and although he gets MRI's every 2 months, they continue to be so good, that I feel that it's time to start planning again. That starts with Ryan getting his license back on Saturday. This is a huge step of confidence for us all with his medical condition and will give our family back a lot of independence.
My life these days is less and less about cancer and I really like that. I do work with Rethink to help others going through this tough time and want to use what I learned to help them, but want my body to forget that it ever had cancer. What this hard few years has given me is the opportunity to experience some really great things. It has pushed me to make my Life List an evolving one and one that I try to work on a bit every day.
Next the family went out to Kananaskis for the Long View christmas celebration. Talyn wanted to live in the pool, I wanted to casually stalk the actors staying there - only a first name is needed - Lenardo and Ryan got to relax and play some poker. We don't have any family that lives here in Calgary, but Long View has done a great job of filling that gap for us.
The following weekend, my mom, Talyn and I all flew to Toronto for Breast Fest Film Festival and for the premiere of the documentary I was in. Growing up, I always wanted to be famous and perhaps act in a movie - in that dream having breast cancer wasn't a part of it, but I'll take what I can get. One big check on the Life List!
Then Ryan, Talyn and I enjoyed a week in Mexico back at the resort we went to 2 year's ago. The resort continued to impress us and Talyn made some new friends there - as did we. It was funny but most of the people we hung out with were from Canada. The kids were so close that when they'd see each other at breakfast or lunch, they'd ask if the other was going to "THE club" later? That's what they called the Kids Club!
In Mexico I had some time to relax, re-charge and think about the past few years. One of the biggest things I realized is that ever since my first diagnosis in Fall 2006, our family has stopped planning for the future. It's as if we are living like the future isn't a good one for one or both of us and so there was nothing to plan for. It was a year ago today that I got the terrible call from the hospital that Ryan had had his seizures and our lives took a really hard turn.
In just one year, Ryan is doing so much better and although he gets MRI's every 2 months, they continue to be so good, that I feel that it's time to start planning again. That starts with Ryan getting his license back on Saturday. This is a huge step of confidence for us all with his medical condition and will give our family back a lot of independence.
My life these days is less and less about cancer and I really like that. I do work with Rethink to help others going through this tough time and want to use what I learned to help them, but want my body to forget that it ever had cancer. What this hard few years has given me is the opportunity to experience some really great things. It has pushed me to make my Life List an evolving one and one that I try to work on a bit every day.
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