Wednesday, December 23, 2009

What a difference a day makes!

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.

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!

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.

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.

Wednesday, October 28, 2009

A LOT of really good stuff!

We got the results of Ryan's MRI yesterday and once again, it's all good. The MRI continues to show no change since April and although some people don't understand why that's good, that's likely the best news we can have right now. It means it's under control, continues to respond to the Avastin and we're on cloud 9 for another 2 months. It was actually sweet that one of Ryan's doctors said it was the first thing she did in the morning, was check to see the MRI and ensure it was good. How lucky are we to have her?

Last week was our annual Rethink Romp. Although the last minute preparation leading up the event always worries me, it turned out to be a huge hit. We had about 250 guests there, raised around $30,000 and will now have the funds to start the Support Saturday's program we want to. Click here to learn more about this program that is already running in Toronto

Then on Sunday, we had our monthly Live, Laugh & Learn gathering. The topic was the Fertility Factor, which had more questions than many others have before. When women go through chemotherapy at this young age, our chances of losing our fertility are about 50%. So the concern around options before and after are huge.

Monday morning, Talyn and I went to University Elementary School to speak to about 50 Grade 1 & 2 kids. They are raising money for Breast Cancer and wanted to hear from someone who had it about what it is and how I got through. We brought some visuals to help them understand and they were really interested. Talyn also wanted to go to tell them how it was for him to have a mom with Breast Cancer. They had a lot of hard questions..."Why do you get Breast Cancer?", "Can kids get Breast Cancer?" and lots more of "Why do you get Breast Cancer?".

Monday evening we went as a family to receive our H1N1 vaccines. Both of our oncologists recommended this and it was one of the only times where it was a true blessing to have cancer. The lines were 3-4 hours, but because Ryan has immunosuppression with his chemotherapy, we were able to go right through. The hardest part about it all was to try and explain to Talyn why he had to get another needle (having the seasonal flu vaccine 2 weeks ago). He kept saying "Mommy I promise that I won't get the swine flu...please no more needles!".

Tuesday morning I woke up feeling under the weather. Who knows why this happened, but my doctors have been waiting for my body to get sick. It's actually not a good thing if you never get sick and I really hadn't since before my diagnosis. So, I guess that means my body is recovering from the trauma of treatment it's been through...or at least I have to keep telling myself that as I sit in my bed. Probably a combination of a bunch of things - having lots on the go, getting the vaccine and having been around a lot of sick people at work.

It's Wednesday now and I am trying my best to rest and drink lots of fluids as I continue to recover. I do feel better than yesterday and have kicked the slight fever I had and now am juust focusing on getting this out of my body (lemon water, warm lemon water, lemon water).

I have been touched over the last week to be a part of so many positive things. I always say that we have to do our best to turn the bad things in our life into a good thing for others. This is the positive that I have tried to take from our cancer experiences. I am a very proud mommy to be able to take Talyn along for the ride too - what an amazing difference at even 4 years old that he can help make.

Thursday, October 1, 2009

2 new babies and 1 big pill to swallow

Our friends and family have been blessed with 2 new baby boys over the past 2 weeks. I have a new nephew, Cole Ryan Westerman. Ryan's oldest brother Sean and my amazing sister in law Michelle had him on September 21. They have been trying for much too long for a baby and now they finally have their little miracle. One of my best friends, Jill, also had a third baby on Sunday. This time a boy to add to her family, Levi Alan Gervais. Talyn is so happy to have two new boys to play with and can't wait until they get big enough to wrestle with him.

Even though I am so happy for both families, it also makes me a bit sad. I had always wanted to have 2 kids and it seems like there are a lot of people around me having a baby right now. I am of course thrilled for all of them, but deep down I am also a bit sad. It really hits home that we are not going to be able to have another baby. Writing that down is even hard. I am thrilled to have such an amazing son right now, but can't help but feel a bit saddened that he won't get a sibling. My cancer is fueled by estrogen, which gets increased with pregnancy. But more importantly with Ryan's delicate health, we need to focus on what we have, not what we want.

My Rethink work is continuing to amaze me. We are getting ready for the Romp on October 22 and hoping to raise enough funds to start our next support program in early 2010. I have been doing a small media outreach to get more awareness around the charity in Calgary and with time, it will come.

We went to see the Dalai Lama yesterday as well. He says everything that we already know and so simply. But when he says it, it truly resonates. Why can't this world be filled with peace? Why is the century that I grew up in going to be remembered for violence? Can the next generation change this to instead be remembered for peace? I know it sounds simplistic and there are many complexities in the world, but can't we create a dialogue to try and get past this all? Killing each other just can't be the answer.

We are also pursuing some other options with Ryan's treatments. Our application to get the cancer center to fund his continuing treatment got declined again. It is very frustrating that the treatment that is working so well for him, continues to be declined for coverage because it doesn't work for a greater proportion of people. Just because Avastin isn't something that works for the majority of people, doesn't mean that Ryan shouldn't be covered for it.

Something needs to change in our health care system to allow it to be more personalized. We can't continue to make decisions for drug coverage based on whether a large number of people are responding to it. If we didn't have assistance with paying for this until this point, Ryan might not be with us. How can this be right? And so, we continue to fight the fight that so many people are facing. Hopefully the media will help us.

We all face challenges in life. This last few weeks has continued to show me that we need to enjoy the high's and try not to dwell on the low's. We can each continue to make a difference to others. As the Dalai Lama says "start with self confidance, then you can have inner peace and only then can you show compassion to others".

If you ever ask yourself "How can one person make a difference"? He sure has.

Monday, September 14, 2009

The best medicine

Over the past couple of weeks I have been feeling so much better. I have tried many different things, including: reiki, body talk, seeing my therapist, talking to friends, indulging myself in things I like and doing fun things. These all helped a bit, but what really gave me the push I needed? Hearing that Ryan's MRI was the same as the last one, except it was less agressive.

The doctors are putting together a plan to start to reduce him on all of his meds and even said that it's likely that he can drive again! Although it will be a while before we get to that, even knowing the possibility was there...that the doctors were thinking that far out was amazing.

Tomorrow we go see the doctors again for another check up. The only part of the last meeting that left us a little bit uncertain was when Ryan asked how long he would continue this treatment for. In all of our previous chemo experiences, we have known it would be for 4 rounds, 6 months or 9 months. But the answer they gave us was "until the tumour progresses".

Of course, why would they change something that is working? Especially when they don't seem to have a lot of other options up their sleeves. But it was almost daunting, like they expected that would happen at some point. So we'll talk to them more about that.

On the Rethink front, there are lots of exciting things going on. Our monthly support nights - Live, Laugh & Learn, continue to be really fulfilling. I love seeing new people out and hearing how needed this is for them in Calgary. Our second annual Rethink Romp is also coming up on Thursday, October 22. We just started selling tickets on the website and it's sure to be even better than last year.

So far we have Sephora doing the "eye's" of the fall for us, Salon Refresh glamming up our hair, mini manicures, massages, a photo lounge to remember your new look with your friends, cupcakes, chocolate, tempting silent auction items, great music and we're raffling off a Vespa! The tickets are only $45 for all of this fun stuff and it includes one of our signature drinks. We sold out before the event last year, so if you're interested get your tickets now... .

What have I learned from this latest downturn and upswing? Life would be pretty boring if I hung out in the middle all of the time. Every once in a while we all need to be reminded of the down so that we can truly appreciate the up. Here's to everyone's "ups"!

Monday, August 31, 2009

Filling the "magical" reserve

I haven't been online for a while. Every post that I do, I feel a need to be positive and help someone, but I haven't felt much like that lately. So now I've decided that being honest about how I'm feeling might help someone too.

Medically, we've both been doing well. Can you believe it will be September tomorrow? We've enjoyed catching up with many friends over the summer, made a trip to Regina and my parents cottage to see family and friends and then just got back from Vancouver for work and some family visits. Yesterday we took Talyn to the Lion King. I didn't know if he would sit still or not, but he had his mouth open with amazement the whole time. The whole family loved it.

In an hour, Ryan will go in for another MRI and we will get the results tomorrow morning. If you'd asked me 2 weeks ago how I thought it might go, I probably wouldn't have given you a very positive answer. He has been experiencing some intense anxiety, which we believe has been creating some seizure like symptoms. The good news is that since he went to see our amazing therapist, he hasn't had any further problems. So, I am feeling fairly positive about tomorrow but with a mild sense of normal nervousness.

Over the past month, I have felt those familiar feelings of anxiety building up again. It's weird, I have been really good since February, but lately I wake up and often feel that sense of "grey" all around and a feeling of anxiety building up inside of me. If I have somewhere to go and something to do, then I find the feeling goes back down when I leave the house or else I feel a sense of nausea for the morning, but by the afternoon I feel good again. Anxiety and the "grey" are really scary feelings, they come out of nowhere and feel like they could spiral out of control quickly.

I have just been getting through week after week and been happy that things have seemed to go away mildly, but deep down I know the situation has not been solved. Tricia has a way of making perfect sense of everything and when I told her about this, she did it again. She said that everyone has a magical reserve of energy that is used up in times of trauma. When you have cancer, it takes so much energy to get through the physical treatment, that those reserves are used up to deal with the emotional stuff going on underneath it all. For my family, we have been operating on very low reserves for some time and with each month that passes, we need more energy to deal with the ongoing stress of our life and keeping that happy attitude while we do it.

Since my last treatments one year ago, I might have been able to build up my reserves for 6 months at a time. But now my reserves are empty again so I need to find a better way to do this. Things with Ryan might be up and down for many years, so I need to build a reserve for 40 years, not 6 months.

So the question then is how do we all build up that reserve to ensure we have enough to get us through? One thing is to make sure we are doing enough of the things we love in life, that we feel a surge of energy from. Do you know what those things are for you? Think back to 10 years or to your childhood to give you some clues. Then find a way to incorporate some of those into your life. That is the hard part. We are already doing a great job of balancing so many things, that how can we add one more? The answer is that if we don't, they will all fall eventually. So, I am working on that.

That is my life these days. In the next while, I will try Reiki, more visits to my therapist, some homeopathy's to help me "release" my emotions from time to time and anything else that might help. I hope by the next post I will be telling you of what else I've learned to help me fill my reserve to last for 40 years!

Tuesday, June 23, 2009

My first chapter of the new book

So far so good. This new book idea of Tricia's is really working out. In all of the updates from yesterday's post, I forgot to mention that I also had my last major reconstruction surgery over the past weeks. They did end up removing that area of concern they were watching and I have been waiting to find out what it was.

When we went into the Tom Baker to get Ryan's results today, I literally ran into my Plastic Surgeon. He had just returned from a week away and I asked him about my results. He said that if I had a minute he would go to his mailbox at the hospital and check if it was there. So we stood in the hospital lobby as he opened all of his mail, trying to find my results. About halfway through the pile we found them and I was overwhelmed with warmth to hear that the whole area he removed was "negative for malignancy"! What I wasn't so happy to hear was that it was "fatty tissue" - guess I have to start exercising on top of my implants. Just kidding. He did cut very deep above and below the remaining scar tissue from my last recurrence area and so the fact that it was all negative finally reassures me that the cancer I used to have is out of my body.

We then went onto get Ryan's results and the good news kept coming. His MRI is "unchanged" since April and the area that had exploded with growth and caused all of the concern in the fall has calmed down. They do part of the MRI with contrast and that would light up any fast growing parts, but all the parts on the picture were dark. With Jo-Ann going back home tomorrow, that was the perfect news we needed to help us rest assured that things will be fine.

So please celebrate life today! It is a good one. Cheers!

Monday, June 22, 2009

The last chapter

Tricia and I sat on my front porch last week toasting many things - my birthday, her new place and life. I said, let's toast to starting a brand new chapter, out with the old and in with the new. She said, let's be done with our last book, it's actually time to start a whole new book. The last book was filled with adventure, but now let's forget about that and move on to new things. I agreed. And so I thought I would write this blog about what I've been up to and what I've learned lately about life and then start the next post about my new book!

There has been lots of celebrating over the past month. Tricia and I both turned 35, but her much before me (3 weeks to be exact). For her birthday we got a great makeup artist we know to come over to my house and show us how to apply makeup. As little girls, we all figure it out somehow, but I know that I learned a lot about how I'm supposed to do it! She also looked through our stuff and told us what to chuck (tasha - coral

Ryan and I went away to Banff for 2 nights while Jo-Ann spent some time with Talyn. This was the first time we've both been away from him...ever! It was really nice to rest and recharge and I did come back feeling like I got some time to appreciate my 2 runs with cancer and bidding them a fond farewell.

We had our second Live, Laugh & Learn event (support night for Rethink Breast Cancer). It is hard to explain how rewarding it truly is to watch people's lives being moved in a more positive direction because of something you helped with. It gives you an energy like no other!

Ryan and I also spent some time with Talyn's play therapist learning about parenting for someone that has gone through as much trauma as he has. Firstly, we were really surprised to hear the therapist say that if he gathered 100 therapists and they all discussed children they had worked with and what they had gone through, Talyn would be at the top of the list. This was really surprising to both of us, because it's just our normal. But it also helped us to understand why it is so important to work more closely with Talyn right now and react differently to his anger because it isn't coming from a place of the now, but rather what he has experienced almost losing both of his parents a couple of times over now. Secondly, we learned some great parenting tips. It's funny how when you decide you want kids they just let you bring them home from the hospital and assume you know how to do it. There are lots of books you can read, but having someone sit down with you and go through concepts and scenarios has been truly priceless.

I was fortunate enough to be asked to speak at Calgary's Relay for Life event on Friday night. I told my story to the survivors and caregivers that attended the event. It's the first time I have actually sat down and put it all together. I could actually see the hope in people's expressions when I got to a promising part in the story and then the extreme disappointment when we got hit with another turn in the road. At the end, the people got to their feet and I got many hugs from survivors who could relate. It was really uplifting!

Saturday night the Fields came over for dinner. This is the generous family that gave Ryan $60,000 to fund his treatment costs. Although we have been in touch with them since December over phone and email, this was the first chance we had to get together with them in person. We also got to meet all of their kids, Mitch, Kyle and Hayley and spend the night with them all. Brad and Cheryl are such amazing, down to earth people that we had to keep pinching ourselves at how easy and enjoyable it all was. I truly hope they will remain friends with us forever!

Sunday started with Talyn and I serving Ryan coffee in bed and then going out to get the Calgary Sun and seeing them both on the cover. They ran a story about Ryan being so healthy for Father's Day and how much that meant to us all. It was another reminder of what we've been through and how far we've come. Tomorrow morning we go in to get the results of Ryan's second MRI since starting the Avastin treatments. We feel very hopeful because of how well he's doing, but also a bit nervous because that's just the way it is.

I will never forget all of the valuable lessons I have learned from cancer and the ones I continue to learn from people I am speaking to and living with. They have helped me bring new perspective to life and have offered me the opportunity to help others with their struggles. But now I am looking forward to starting my new book and see what that has to hold for me!

Thursday, May 7, 2009

The Lessons of Life and Death

Over the past week, our family has experienced the highest of highs and the lowest of lows. I sometimes think that this rollercoaster happens at such an accelerated pace for us that we don't even notice it anymore.

If you've read Ryan's blog lately, then you know that that MRI results we received last week were much better than we could have hoped! He has some pictures on his blog as well (link to his blog is to the right of this) which show the differences. Basically we want to see no white enhancements, as that is the tumour and inflammation. If you look closely, you can see that the reduction in that white area since November is large! He will have another MRI and we will keep hoping for more and more darkness in his pictures.

Right after this appointment, I went to go for my checkup. It started off really well and then we talked about a little area that I had noticed near my recurrence site. It was a small bump, but the doctor agreed that we better check it out. On Tuesday afternoon I went to get it looked at and the ultrasound confirmed that it's a 3 mm cyst that has no malignant properties. All good - small and doesn't look like cancer. But they still would like me to go review this with my surgeon. Probably for a very good reason, they are extra careful with me now.

Friday evening, a friend and fellow breast cancer fighter lost her fight to this awful disease. Heather was someone I met because we shared the same oncologist and would run into each other often at our appointments. What I really appreciated about her was her fighting attitude against all of the odds and her passion to continue to live life and do things that people didn't think she could. About 2 months ago, she is the one that wanted me to go to a deep water workout class with her! The girl was using a walker to get around, but was still working out in DEEP water. That is determination.

Ryan also heard word that a friend he knew lost his battle with brain cancer. To find out that two such amazing young people who were such fighters lost makes us both so mad at this disease. But it also continues to reinforce for us the lessons of living life and of course makes us more committed to helping find a cure.

Friday morning started a 5 day birthday celebration for Talyn. With many visitors and different parties for school, the dayhome and then at home he was definitely glad to be turning 4. We also had some friends over that had helped us through the past several months and it was nice to have everyone together. Thank goodness we had all the grandparents there to help with the large invite list and my mom cooked up a bunch of things to keep everyone fed.

Sunday evening was the launch of our Live, Laugh & Learn event for Rethink Breast Cancer. The reason I first started volunteering with them was the void that I saw in support for young women here in Calgary. So it was absolutely amazing to see it all come together and make a difference in people's lives.

This past week has been filled with many lessons that we continue to get thrown our way to enjoy life and give back. The rollercoaster continues for us but I wouldn't change it if I could. The lows are what make us appreciate the highs at such a greater level. Keep that in mind for the challenges you run into every day, if you didn't have those would you truly appreciate all of the good you also have?

Wednesday, April 22, 2009

Everything is Amplified

It's weird to think how different or the same your life was 3 months ago. There were times in my life where I felt like nothing changed in a year and other times when so much went on that I thought it had to be 5 years that just passed. Lately it feels eerily like we're just getting back into a routine of life from several months ago. I feel healthier and more energetic than I have in a long time and we are doing normal things like planning Talyn's 4th birthday party.

Ryan is doing really well, but everything now seems really amplified. A few weeks ago he was doing better than he had been since October, 2008. He seemed really interested in what was going on in the world, was talking about work and was very engaged with Talyn. I had my guard up to it initially, but then I let it down and really enjoyed the old Ryan returning.

The doctors have been really happy with his progress and so have put him on a reduction plan for the steroids (the drugs that help with any inflammation around the tumour). Last week he went down another step and then he started having a few symptoms. Mild headaches, extreme fatigue and feeling really groggy and heavy headed most of the day. To anyone else, these symptoms might just indicate a flu coming on, but for us every little thing is amplified. So, the guard went quickly back up and I waited to see what else might come.

Monday night he had some mild seizures and I tried to manage the possibility of them becoming more. Because Jo-Ann is in Regina right now, while this was happening I had Ryan laying on the bed and I was watching every change in him very closely and Talyn was on the other side of me. He was trying to watch TV, but every few minutes he'd turn to Ryan with a very concerned look on his face and I would try to reassure him that daddy was ok.

Nothing more did happen, but Ryan went in to see his doctor's the next morning and they re-increased his steroids back up a level. Since then his symptoms have gone away and we have tried to return back to normal again. But of course the feeling of doubt sits on both of our shoulders most of the day anyhow. Ryan has his next MRI scheduled for Tuesday and we will get the results on Thursday morning. It was actually kind of funny because I am seeing my oncologist for a check up on Thursday morning too, so we had to try and align our appointments.

Throughout all of this, another close friend of mine who has been prone to seizures had another flare up. They ran some initial tests and they all came back normal, which is great. But it made us all ponder the question....would you rather know what is wrong, even if it's serious, and have a plan to treat it, or never know and just hope that it goes away? They are continuing to look into things for her, but I do hope they give her some answers soon, as I would definitely rather know and have a plan!

One of the most exciting things going on in my life is that we are launching our first support night for Rethink Breast Cancer on Sunday, May 3. When I first signed up to work with them, my goal was to create something great for young women dealing with breast cancer in Calgary and now we've done it! It feels really great to have done something so meaningful. If you know anyone that might benefit from this program, here is a link for more details

In the world around me, I have some friends that are doing many things to support cancer research - walks & crazy long rides! I thank you all for doing what you can to end this thing once and for all, too many great people have lost their lives to cancer.

Monday, March 23, 2009

Where is my time best spent?

This is a question that everyone asks all the time, but I have been asking myself it a lot lately. I have been thinking back to when the last time in my life was that I didn't feel pulled. I think it was before we had Talyn. Before that, there were two ideas of what to do in any given moment, but now it seems like there are several competing priorities all of the time.

I talk to my mommy friends about mommy guilt, but now I feel like it's amplified. Talyn has been experiencing some problems as a result of all of the trauma he has had in his life since he was one. So, he is attending play therapy and it has been really eye opening for Ryan and I. Not only are we learning how much our cancer has affected Talyn, but we're also seeing how our parenting skills have been less than perfect throughout.

Ryan's MRI showed that he is responding to the Avastin, so they will continue to look every 2 months at its progress. Although the news was really great, I still can't shake the doubt over the long term success. I guess that is what happens once you've been dealing with the ups and downs for so long. He has been able to reduce some of his medications and that has brought the old ryan back again. His only real side effects are his growing fatigue and his short term memory (which they say should get better after the full affects of radiotherapy are through).

But perspective really is everything in life isn't it? I have a friend who was diagnosed with breast cancer around the same time of my original diagnosis and she has been fighting an extremely hard battle. But unfortunately her cancer was much more agressive than mine and her life has been fairly challenging lately. She needs help walking and gets dizzy quite easily, but last week told me that she was attending a deep water workout class and asked if I wanted to go!

With the world economy continuing to be so volatile, friends of mine are also losing their jobs. Some of them, the breadwinner of the family. So, although my life has its challenges and I'm sure yours does to, there's always a dose of perspective to bring us back to reality. Everyone has ups and downs, so spend your time wisely on things that make you feel strong, happy and fulfilled!

Wednesday, February 18, 2009

The sun will come out tomorrow!

Can you guess from the title that I went to see Annie last night? Tricia's grandma treated us to a night out in Calgary, to re-live Tricia's childhood of producing and directing the play for her block. Although we thought we knew the story pretty well, it gave us both a little reminder of something we can all matter what we're going through, just hang on till tomorrow.

For me the dark is my worst enemy. At night when I wake up to my thoughts or in the early morning hours before the sun comes out, it seems that my mind runs wild with 'what ifs'. At first when I wake up, for a moment I believe that life is perfect and normal and I breathe in a sigh of relief. But then I quickly remember what life is like these days and the anxiety sets in. I just need to make it through until the sun comes out and it literally feels like a much easier day. So that's what I focus on is one day at a time and the fact that I can't control what is happening right now, so I just have to do my best and hang on till tomorrow...come what may (is anyone else humming Annie right now?).

All in all though, we are in a much better place than we were even 3 weeks ago. My mom really helped us through a tough time and now Jo-Ann has moved in and we are getting her more setttled. Having someone here all of the time to help with everything is really the best relief I can get right now.

But, there are some other little angels in our life that have also helped brighten our days. The Powells bring us a delivery every week of organic dishes to help us get through the week with less cooking. It is so nice to open your fridge and see dinner just waiting for you to dish up! Some of our friends also just surprised us with a gift card to the Fairmont Hotels. Once Ryan's doctors give us the clearance to take a little trip, we plan to use this to recharge and relax. We have also been continuing to receive financial help for the Avastin treatment and get little surprises from unexpected acquaintanaces. More proof that people really are amazing.

We went for Ryan's check up yesterday and although he is experiencing his fair share of expected side effects, he continues to do really well. So well that they are slightly reducing his steroids over the next 2 weeks. This is a big relief to us all as they are creating some of the worst side effects. Ryan has his next MRI March 4 and then they will take another look at what's going on inside. From that scan, we hope they see a reduction in mass, so they can continue with the Avastin and decreasing the steroids.

So although we've seen our fair share of dark days, we have also experienced a huge upswing over the past few weeks. If you are having a dark day, just remember....the sun will come out, you better hang on til tomorrow, come what may! Sorry if you now have that in your head for the rest of the day, but maybe it's a good reminder that dark days are often followed by sun.

Wednesday, February 4, 2009

Coming out of the valley and taking in the view from the top of the mountain

You often hear that people look at life changing experiences, like having cancer, as a gift. It often takes people some time to get to that conclusion, but from those that I've talked to about it, it often goes like this. Before life just went on day by day, it had it ups (finding a parking spot right in the front of the store you wanted to go into) and its downs (a parking ticket), but overall everything was fine. But once you experience something that changes the way you live life and look at life, then those smaller things just don't really matter.

Now the ups are getting a clear CT Scan to know that your cancer hasn't spread and turned incurable and the downs are spending 12 hours laying on your bathroom floor because you don't have the energy to walk back and forth to your bed in between being sick from the last round of chemo. Once your life changes like this, the old life you used to have seems like you were living in the prairies.

Now, on days like yesterday when the doctor tells your husband that his CT scan looks the same as it did on December 12 and they have a "plan" to proceed with the chemo and avastin right away, the view from on top of the mountain is pretty sweet! Looking back on December 12, when Ryan was paralyzed on his right side, couldn't speak and would look right through you, you remember the deep valley that you were in and appreciate the beautiful view even more.

We left the cancer center in shock. Ryan started his daily chemotherapy pill last night and was in today for his first infusion of Avastin. Everything went really smoothly and he is already scheduled to go back in 2 weeks for a quick check up with the doctor and another infusion. Tomorrow I go in to see my oncologist for my 3 month check up and injection and then we get a much needed break from that place for 2 weeks.

They gave us the list of potential side effects and now we just wait and see how Ryan responds. We know the odds are still 50/50 of whether this will work, but a 50% chance for someone as strong as Ryan is pretty good. We are enjoying the beautiful weather today from on top of this mountain and breathing in some relief for now.

Sunday, February 1, 2009

Coming out of the fog

I can't count the number of times I've heard people say things like "you're so strong" over the past 2 and a half years of cancer crisis'. And for the most part, I have been. I haven't been putting on a front at all, I have felt like I could handle it all. But finally last week the walls came down.

We had been fortunate enough to have Ryan's mom or my mom staying with us since Ryan's seizures on December 12th and it wasn't until we were left all alone last Saturday that I felt completely overwhelmed by the pressure of it all. How was I going to be able to be a wife, mother, nurse, psychologist, full time chaffeur, medication auditor, doctor liaison, cook and EMT all at once? The answer simply was that I wasn't.

I went to go see my doctor because I saw where my mood was headed. She said that I had reactive depression and anxiety. The anxiety part was easy enough to see now that I was alone. The negative thoughts spiralled quickly (especially in the mornings) and my chest felt like it had a million butterflies fluttering around inside of it. Reactive depression was new to me though. It basically means that over the past few years, I have been hit with major stressor after major stressor. Tricia's relapse and stint in the ICU, my cancer diagnosis, Ryan's tumour starting to grow, my relapse, Tricia's transplant and now Ryan's tumour turning very aggressive. Can you believe that has all happened since the summer of 2006? My body hasn't had time to deal with the events before it is hit with another and it has finally caught up with me.

So, she prescribed some medication to help with both of those things. The good news is that this type of condition is usually resolved quite quickly, but because the stress in my life is not over yet, she wanted something to bridge me until it is. I am fairly "anti-drugs" in general, especially because I am trying to clean my body out from all of the cancer stuff it has been fed, but in this case I need to be as strong as I can be and quickly.

One week later, I am feeling much more like my old self. Tricia and Kevin really stepped up to help our family out while we were without a mom. But the best medication that I got was my mom flew in to help us out until Jo-Ann can come back. We realized quickly after she left, that we truly do need another full time person around our house to help out with everything and who better than a mom? While Jo-Ann is adjusting her life to make this temporary move to Calgary happen, my mom is here to fill the gap and help us out!

Ryan had a CT scan last Thursday to take a peek into his head and see what's happening. We will go to meet with his doctors on Tuesday to talk about that and the next steps for his treatment. We are trying to stay positive, but cancer can tend to throw a couple of curve balls your way, so we are also bracing ourselves for what is to come.

I learned an important lesson this past week. You should never be afraid to ask for help. I needed help in a bunch of ways and was hesitant to say anything. But I am so happy I went to see my doctor and dealt with things quickly and that I asked my mom to please come and help us out. I am in a much better position today because of it and it will make me much stronger for whatever next steps there are.

Saturday, January 17, 2009

don't cry mommy and don't give up

Those were the words that Talyn said to me yesterday morning when he found me feeling completely overwhelmed and crying. Let me back up. This past week I have felt like emotionally my fight is leaving my body. I felt tired and heavy and not like myself at all. At that same time, physically I have been having some episodes of vertigo, lightheadedness and even slurred speech. When I went to see my doctor about it, she ordered something that didn't make me feel too urgent CT for my head, chest and abdomen.

Since September I have been focusing on Ryan, but also keeping in my mind that I have to take care of myself to ensure that my cancer does not return. Having just finished the big treatment stuff in August, my body hadn't had a chance to return to normal before we entered the ring to fight again.

I have been eating very well, exercising, seeing my psychologist to deal with the emotions and seeing some great eastern medicine doctors to keep my immune system increasing. But it's the stress that is the hardest thing to really control and is one of the things that I know my cancer feeds off of. So when my doctor ordered that test and urgently, I started feeling like my world was spinning out of control and I couldn't make it slow down.

Thanks to the amazing support of some very special people, they ensured that I got to the tests I needed to go to and that they were done quickly - thanks Lori, Sheri and Don! When I arrived at the diagnostics place, Rick and Lynne recognized me from Ryan's story and knew that I needed the results yesterday. So, literally 5 minutes after my CT scan was finished, I found out that it was clear! I felt like I had once again been given my life back, but this time it came with some conditions.

Firstly, always put on my own oxygen mask before anyone else's - I can't be much help to Ryan or Talyn if I am not well. Secondly, I need to slow down in some aspects of my life and so Ryan and I have discussed some ways to do this. Thirdly, I need to start seeing my psychologist weekly. Obviously the stress of this all is affecting me more than I realize. Lastly, every time I fall, great friends and complete strangers are right there to help pick me up again and get my fight back.

This morning I woke up feeling energized and ready to give Ryan's fight everything I a way that's not too much for me :). We just returned from Firehall #8. The guys there had seen Ryan's story and made a very nice donation. But the best part was that they offered us all a tour of their station.

They gave Talyn his own fire helmet, let him "drive" all of their trucks, taught him how to play ping pong and even had some treats waiting for us afterwards. Needless to say, Talyn now wants to be a firefighter when he grows up and I have even more faith in the goodness of complete strangers in our world. We didn't know these guys going in, but now I feel like we have some new friends right behind us.

What a week it has been. Yesterday morning I felt like my world was out of my control and then when Talyn caught me at my lowest and told me "don't cry mommy and don't give up", it was like a lightbulb went off in my head. ENOUGH! It's time to take back control and get my fight back. Thanks so much to everyone who has helped to pick me up this week - Lori, Sheri, Don and our new friends at Firehall #8. With support like this, I won't give up.

Tuesday, January 13, 2009

Riding the wave

This past week I feel like our family is finally starting to come down from the adrenaline rush of the hospital stay and the exciting media blitz. It is now that the emotion of the past month is starting to hit us both. How serious Ryan's seizures were, how fortunate we are that he was able to recover physically and how the possibility of Ryan's fight not being enough are coming to light.

We have really been on a wave of emotion since the news that Ryan's tumour had broken out a bit on September 11, 2008. Whenever some news hits we are upset initially as we try to deal with the latest blow, then we accept it and get back to reality and live in today. But then we are knocked off the wave again temporarily with a new piece of information.

We know that it's completely normal to feel this way and we are fortunate enough to be able to quickly get back on the wave and keep riding, but it does seem to be getting harder each time. Each new piece of information makes it easier for the negatives to creep into our minds and keep us there for a bit.

Ryan has had a few blips on the radar lately and we are trying to keep our focus on today. We continue to appreciate all of the support from friends, family and strangers as we navigate through these rough waters.

Every one of us has struggles like these in our lives and all it takes is a little bit of perspective to get us back to the today and to get back up on the wave and here's what did it for us:

Use this as your reminder of what a true struggle is really like...