Monday, February 23, 2015

Live it with Love

Since I havn't posted since before Christmas, I hope that you all had an amazing time celebrating with your friends and family!  We had some really nice family time this year.  It was very quiet & peaceful which was much needed.  Hockey is starting to wind down now after a busy season & we are getting ready for a trip out to Vancouver.  We are heading out there for the premier of the documentary I was in a few months ago.  The boys are excited to be going somewhere new and to maybe enjoy some warmer weather for a few days.  It's been in the -40's here (with the windchill) and that is just really freaking cold!!!  Looking forward to a bit of a break from that!  I am excited to reconnect with everyone at Callanish, although a little nervous to see the documentary for the first time.  It's difficult to open up and then to have that on film for everyone to see.  I completely trust all involved in making the film so that makes it easier.  And the beautiful survivors that I feel so grateful to have participated with during this retreat...  These women inspire me and made it such a beautiful experience.  Jeff & the boys will get to see what I do when I takes off to a retreat & will get to meet all of the amazing people that are helping their mom in her healing.  Super excited for this!

Speaking of healing, it was good news on my last set of scans!  My bone scan was clear, as well as the CT scan of my body being stable.  My brain MRI showed no new tumours and NO growth in the tumours present.  This was a pleasant surprise since these tumours have been slowly growing in the last year.  I have since had another CT scan and will get the results back this week.  I have been thinking about all of these scans and the radiation exposure that put me at risk for a secondary cancer.  I've had people bring this up to me concerned that this will cause more issues long term.  Long term??  Could this possibly happen?  I have discussed this with my doctor previously but I think that it's time to bring it up again.  Because I am in such unknown territory it's difficult to know what would put me at higher risk.  The radiation or not catching things early enough. What is expected to happen is the chemotherapy will stop working and the cancer will spread quickly.  This is why I'm being scanned every 2 months.  But no one knows REALLY what will happen.  Which is a real relief for me and allows me to remain hopeful.  I've been on this drug longer than anyone else in my clinic which deals with all advanced melanoma patients in the province.  So who knows?  

So originally, I thought that 5 years would be a miracle but I threw it out into the world because, well, why not?  And here we are....  It was 5 years on December 9th since my diagnosis with metastatic disease.  I thought that we would celebrate with a big party but when the time came that just didn't feel right.  What 39 year old should have to celebrate being alive for five years?  Maybe it would be different if it were 5 years being cancer free.  I know that's a big milestone for people who are in remission.  I guess it's different for people living with incurable cancer.  So because I had reached my 5 year (goal) I felt like now what?  What happens now?  Do I set another goal?  1 year? 2 years?  Take it day by day?  My 40th birthday?  Are these goals even necessary?  Do they help me in any way?  I feel like it did give me something to hope for before.  Now I'm not sure what feels right....  It's like I'm living from one scan to the next, in these 2 month increments.  If anyone has any thoughts on this please feel free to share.  

I do still have hopes and dreams for my life, even though it is sometimes really hard to look into the future - a future that is so full of uncertainty.  I do still want things out of life.  I wonder about posts like these......

When I read this I wonder what this is meant to do.  Is it to show support to those going through cancer?  Is it to make people feel guilty for wanting nice things in their life when others are struggling with illness?  Material possessions are not important especially compared to life but it doesn't make you a bad person to want things.  I just don't really get it.  I would love a new house, a new cellphone, to lose weight.....  ummm....yes please!  Just because you have cancer doesn't necessarily mean that you give up all of your hopes and dreams to "win the battle".  This came up when I was on this last retreat.  We were asked to set intentions for our lives.  What did we hope & dream?  I felt an emptiness in the pit of my stomach.  Of course I hope for healing.  But it took me a while to go beyond that and it made me sad.  In all the business of dealing with cancer, I gave up on my dreams.  I just stopped thinking about it because it was too painful.  Looking into this unknown future had become so difficult that I focused solely on the present.  It's great to live in the present moment and really experience it and I have worked at doing this since my diagnosis.  But what about dreaming for more?  What's wrong with dreaming about the future that I would love to see?  I can only speak for myself but I want more....much more.  

This brings me to the whole what to say and not to say to a cancer patient.  There has been many articles that I've read online lately and I wonder...  Is there such a thing?  Aren't we all different?  Don't we all need different kinds of support?  For example, when people tell me I look great sometimes I hear (for a cancer patient) and other times when I am feeling great it just boosts me up even more, makes me feel healthy.  While my friend couldn't stand when people told him he looked great because he felt terrible and it made him feel like they didn't understand what he was going through.  (Yeah, I look good, well I feel like shit!)  You can say the same thing to 10 different people and they are going to react and take it differently.  Cancer or not.  And it depends on the day.  I don't believe that there is one perfect way to speak to people with cancer.  I believe that as long as you are speaking from a place in your heart of care & concern, that's all that matters.  I remember going to visit my cousin in the hospital over 5 years ago and really not knowing what to say to her.  I may have said the wrong thing.  Thinking back now I just hope that she knew that I cared and felt for her.  I felt that it was so unfair, that she deserved better.  I don't remember what I said but I'm sure it wasn't the perfect thing.  It didn't matter though.  She was so sweet and not at all expecting anything from me.  I didn't feel like she expected me to completely understand at all.  I tried but I didn't get it.  How can anyone get what you're going through especially when they havn't experienced anything like it.  I don't want anyone not to talk to me because they are afraid of saying the "wrong thing".  I don't think putting that pressure on people is fair and may end up isolating cancer patients even more.  I've been in both shoes and I think that being kind to one another and understanding is always the way to go.  Not judging one another or ourselves, just speaking from the heart.

So for all of my friends and family I am very grateful for your words of comfort.  You can never say the wrong thing to me because I know that you have nothing but good,caring intentions.  
Love to you all!  
My heart and prayers are with my Uncle T right now and my Auntie E who have both been diagnosed with advanced cancers recently.  Sending extra love to both families.
xoxo Natalie

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