Sunday, November 23, 2014

Let it be

So I've been meaning to blog every month but it just never seems to happen....  Life gets so busy!  Sometimes when I sit down to write I can't seem to find the words and other times I don't really want to think about what is really going on.  It can sometimes feel so overwhelming.  I went on a retreat in Vancouver in September where I was able to connect again with the beautiful woman of Callanish.  This retreat was a little different since it was filmed for a documentary about young adults living well with metastatic cancers.  It was amazing to connect with this small group who are going through and experiencing much of what I have been and am going through.  I feel very honoured to have been a part of this and my hope is that it may help someone else feel a little less alone one day.  It will also hopefully be shared with some health care providers so that they can get an up close and personal look into what living with cancer can be like for people.  I'm excited to see it once it's all been put together!

A few weeks ago I attended a healing retreat here in Winnipeg with Dr. Rob Ruttledge and Timothy Walker.  What an experience!  My mom and sisters were able to come with me and we learned about relaxation, meditation, yoga and basically how to get through these difficult times in one piece.  To be able to express your emotions in a healthy way so that you can then move forward and live life fully is not always easy to do.  Sometimes I start feeling stuck and so I have to work at moving through all the yuckiness to get to the good stuff.  It sometimes takes a lot of work but it is so worth it!  It was so nice to have some of my family there with me because honestly I worry about them.  I think about how they will cope once I am gone and I worry about it.  During the retreat I realized that I need to trust them to be there for each other, to support and love each other.  It really opened up some conversations that otherwise would never have happened and I think brought some peace to all of us.  We all took a lot away from this and I was very thankful for this experience.

My CT scan in September came back looking great.  Everything in my body (from the neck down) is stable.  I am being scanned now every 2 months since I've been on this medication for so long and have way exceeded the expected time frame that they expected the drug to work.  It's difficult to be on a medication that you know will stop working one day but you just don't know when.  This is where learning to live with uncertainty comes in.  Living in the present moment, not looking too far ahead into the future....  My brain MRI did show some changes which was very disappointing.  The drug is not working as well as we had hoped in the brain.  This is often a challenge with brain metastases since chemotherapies have a difficult time crossing through the blood brain barrier to penetrate the brain.  This barrier is a much needed protection for our brains and keeps things like infection and disease from getting in.  So the good news is that there were no new tumours this time but there has been growth in some of the others.  I had a long discussion with my neurosurgeon and we are going to hold out on doing gamma knife again until there is more progression.  I'm not having any symptoms and my quality of life is really good right now so I will be scanned again in December and we will take it from there.  I was comfortable with his decision even though, before I talked to him, I was adamant that I wanted them treated.  I find it hard to know that there is cancer growing in my body and we are just going to watch it.  It has been a definite shift in thinking in the last couple of years.  Before, when a tumour popped up, I would either go for surgery or gamma knife right away.  Now, I need to find peace with the fact that I have cancer growing in my brain.  It definitely takes practice getting used to this reality.

Next is another CT scan and a bone scan this week.  My scan schedule has changed so I am trying to get used to this as well.  It used to be that I was scanned every 3 months and I always had them both at the same time with a bone scan only very occasionally.  There are four stages that I seem to go through when I know a scan is coming up for me.  Preparing myself for the upcoming scan, actually getting the scan done, waiting and waiting and waiting for the results to come in, and then getting those results and dealing with whatever information I have been given.  So it's usually a 2 week process.  To have my scans at different times means I am in this state of scanxiety a lot of the time.  Because of this shift in my schedule I am coming up with new coping strategies so that I don't always find myself in this cycle.  I have always liked to plan something fun to do after my scan so that I can look forward to that and it seems to make things much easier.  My bone scan happens to be on the same day as the Bret Michaels concert that my friend and I are going to so that will be a fun night regardless.  Poison used to be one of our favorite bands so it will be an awesome night rolling back the years!  I'm sure I won't have a second thought about my bone scan once we start having fun!  Love spending time with my BFF!  Laughter is the best medicine!

Speaking of laughter we had an amazing time this weekend!  My little cousin married his best friend and it was an absolutely beautiful wedding.  We havn't had a wedding in our family for a really long time so that made it even more special.  The bride was beautiful and the two of them are so happy together!  Very touching ceremony and a really fun reception!  We got to visit with family that we don't often get to spend time with and the love and laughter filling up the room was the best feeling in the world!  Super happy for these two and know that they have a very bright future ahead together!

So being able to celebrate the good times without letting the bad times overshadow us is always really the idea.  Letting go of how we thought life would be like and just falling into what is.  Looking at all there is to be thankful for and celebrating that.  Do I wish things could be different some days?  Um yeah!  But here we are so we roll with it, always moving forward and cherishing the good times.

xo Natalie

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