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





Thursday, August 21, 2014

We're Here for a Good Time


We're here for a good time!

I hope everyone is enjoying their summer!  It's hard to imagine that we need to start getting ready for back to school already.  I'm actually ahead of the game this year and have the boys ready to go.  Not like last year when I waited until the last minute and found myself in Walmart ready to fight for the last glue stick on the shelf!  We started off the summer with a trip to Toronto and Niagara Falls.  We did a lot of sightseeing with the favorite in Toronto being the Hockey Hall of Fame.  Niagara Falls was beautiful and there was so much to do.  We met up with Jeff's Auntie Bonnie and had fun sightseeing with her.  The Hornblower cruise (the old Maid of the Mist) was awesome and seeing the fireworks from the Skywheel was amazing.

Actually, before we headed to Toronto as a family I had the opportunity to go there for the YACC (Young Adult Cancer Canada) conference.  This was my 3rd conference with YACC and it was fantastic!  To reconnect with these guys again was exactly what I needed.  I met some really great people and heard some very touching stories.  The speakers this year were so inspirational and I came home with a new found strength and hope.  So important when you are living with cancer for a long time - thankfully.  I was able to be a part of a panel talking about living your Legacy.  It really got me thinking about it and what legacy means to me.  It definitely is about making memories and living in the moment for me along with making life fun.   After all, we're here for a good time not a long time like Trooper sings!

I have been feeling really good on this new treatment.  I have been on it now for about 6 months and am not really having much for side effects.  It is like night and day compared to the last one I was on.  My energy has bounced back and I'm happy about not having to take other medications to combat the side effects.  I had my scans done in June and the results really could have been better.  We were hoping that this drug would work better on the brain tumours but the scan showed 1 new tumour and growth in the 2 that were there on the previous scan.  I was told last time that the tumours that had been treated with gamma before were undetectable but that obviously wasn't the case as they were on this scan as well.  I know it's not a perfect science, but it can be so frustrating to think that your tumours have shrunk and disappeared and really they just didn't catch them on the scan.  The good news was that the other tumours in my body have remained stable so the Dabrafinib is working there.  I also had a lesion removed from my chin which looked suspicious for melanoma but came back benign.  The pathology showed that it was a group of blood vessels, not melanoma.  The plan now is to continue on the Dabrafinib and to have Gamma Knife again if things continue to progress in the brain or start causing me issues.  There is another treatment available for me when this one has run its course.  It comes with some fairly nasty side effects so I'm not looking forward to it but at the same time am grateful that there is something else for me to try.  I have been on this type of chemotherapy (BRAF inhibitors) for 18 months which beats out the average of 6 months by far so I remind myself daily of this.  It will be 5 years this December since I was diagnosed with metastatic disease so let me tell you, there is going to be some kind of party happening in Stonewall around that date!  And I can guarantee you there will be cake!!  (and wine)

We headed out to Kenora for August long weekend with the Lindsay's and it was a blast!  This year I really got to enjoy it as I am feeling so much better than last year.  I couldn't step outside last year without getting sunburnt because of the medication I was on so I really enjoyed this year being able to swim with everyone and just hang out.  Sitting around the campfire, watching the fireworks, sitting on the deck chatting and laughing, hiking up Blueberry Hill.....  all so much fun!  I love watching the kids as they do some of the things we did there as kids.  Hanging out with all the cousins, pushing each other off the dock, finding treasures on Blueberry Hill, jumping on the trampoline (only this time it's allowed).  I love this weekend getting to spend time with these guys!!!  Thanks so much for another great one!!

So now it's time to enjoy these last couple of weeks of summer!  This year my youngest moves on to the middle school which is so hard to believe, Grade 5.  My middle one is into Grade 8 and my oldest Grade 11 and driving.  So much has happened in the last 5 years and I will be forever grateful that I have been here to see it and be able to enjoy it.  Life is truly precious!





Wednesday, March 5, 2014

I'm back!!!!

Wow!  I can't believe I havn't blogged since before Christmas!!  If you are reading this - a big thank you for hanging in there with me!  Life has been very busy around here!  So I'll get right to it as I'm sure many of you reading this are wondering what's been happening.  Well, the day came in February when we found out that the chemotherapy I was on was no longer doing it's job.  Some new spots had popped up on my brain scan so a change in treatment was recommended by my oncologist.  We were told this day would come but were hoping it would be much later.  It was almost one year from the day I started on it which is twice as long as what most people get.  That's pretty good!  During this year they have come up with another drug which I am now on.  Goes to show how important time is when it comes to researching cancer treatments!

I've been taking the new drug Dabrafinib now for almost a month and after the initial side effects I am feeling pretty good.  It took my body just over a week to get used to things and the really good news is that so far I've been able to tolerate the full dose, unlike the last time when I wound up neutropenic in emerg and had to have my dose lowered.  The side effects are very similar to the other one with ongoing fever being the most common along with nausea, vomiting, diarrhea, joint pain and the list goes on.  I have not experienced any fever as of yet so fingers crossed.  The symptoms that I was experiencing on the other one have actually gotten better and some have even gone away entirely.  So I am actually feeling a lot better than I was on the Vemi.

We met with my neurosurgeon and decided to hold off doing gamma knife again for now.  These new spots are very small and don't seem to be causing any harm.  Hopefully this new drug will take care of them since it has been shown to cross into the blood brain barrier better than the Vemi which is always the issue with brain mets.  Most chemotherapy does not get into the brain because of this protective barrier.  There is a bit of a difference of opinion between my doctors explaining how these brain tumours spread and where they are coming from but nonetheless they are there and we need to stay on top of them.  An interesting thing we learned from the neurosurgeon is that the tumours I have had treated previously are now undetectable on scans.  This is uncommon with melanoma.  Usually the tumours shrink after being treated with gamma but still remain visible and this is concerning because it may be likely for them to reactivate and start growing again.  My body seems to respond to gamma knife very well and that shouldn't change.  The other good news was that the only visible tumours (besides in the brain) on my scan are in my liver and this appeared to no longer be vascular which means it's inactive.  Yayyyyy!!  I can handle that!

I'm feeling much better on this new drug and it is less toxic so we're keeping our fingers crossed that it is working really well.  I will have scans done in a couple of months to check things out.  Also, the drug company has released it to me on a compassionate use basis which is a huge relief since it comes with a price tag of almost $8000.00 per month and is not yet covered by Manitoba Health.  Yikes!!!!  My doctor was also very excited about a new treatment becoming available to us in the next few months which he thinks may be our next step.  Imagine - a year ago I would have only been offered palliative care.  Now don't get me wrong.  I know that for whatever reason I have responded remarkably well - "better than any of us could have hoped for" quoting my doctor during my visit last week.  But I don't want to sugar coat the reality of metastatic melanoma.  I have lost two very dear friends to this disease in December/January.  We are on the verge of coming out with new life extending treatments but is it happening quickly enough?  One of my friends was having to travel to Toronto for treatment.  When you are not well that makes things very rough.  This new treatment is coming to Manitoba only because my doctor is very vocal and involved.  Don't get me started on postage stamp medical care......  As Canadians I believe that we should all have access to the same drugs and treatments but unfortunately this is not always the case.  I have been struggling a lot lately with questions as to why them and not me.  Why have I responded so well? It is something that I think most cancer survivors struggle with when their friends pass on.  It is very devastating and difficult to understand.  Having lunches and coffee chats with these two amazing people who wanted to live, who had loved ones who needed them, who would have done anything for more time.  It's impossible to understand why they were taken from this world.

So now if we weren't in the cancer world enough, we have been thrown in even more so now.  My dad has been diagnosed with prostate cancer and after waiting for several months is going in for surgery tomorrow.  The waiting has been the most difficult part once again, especially after being told how aggressive it appears to be.  So to have this surgery done and to find out hopefully that things havn't spread and this is the only treatment he will need will be a real relief tomorrow.  All I can say is Cancer Sucks!  Jeff's grandma just went through her diagnosis and treatment of breast cancer having had a mastectomy which she did remarkable with and recovered amazingly well and quickly.  It seems that every time we turn around someone else is going through this.  My kids are getting real life lessons which I wish they didn't have to learn at such a young age but boy will they know how to deal with this stuff as they get older.  My youngest son, on the way home from visiting grandma in the hospital said to me, "We know more people who have survived cancer than people who die from it don't we?"  and he started listing all the people in our family who had both lived with and died from cancer.  This is so true and actually made me feel better about things but it's the ones who have died that stand out because of the intense feelings of grief.  It's hard to forget this when the threat is always there staring you in the face.

My main goal lately has been to stay in the present.  Enjoy what's going on around me right now.  Hockey has been a nice distraction lately.  We've been spending lots of time at the rink cheering the boys on. I've had much more energy lately so have been really getting into my workouts at the gym and focusing on good nutritious food.  Jeff, my parents and sisters have been doing the same so there's been some really fun family workout sessions at the gym.  My sisters have been really getting into eating clean too so it's been nice trading recipes and seeing the family putting their health first.  It is so important and something that tends to get neglected in everyone's busy lives.  I am reading a book called The Healing Journey right now and am really taking away a lot of insight from it.  I also start the yoga study which I signed up for next week.  Do you think yoga could have an impact on quality of life for someone with chronic cancer?  My bets are on yes!  Should be fun!

I am definitely glad that I am getting back into this blogging thing since it is definitely therapeutic and a release for me.  Thanks for listening!!!

Randy, I will never forget our chats especially every time I have a Tim's tea.
Gail, you lived everyday with such zest and vibrancy until your very last.  Sending you a hug and a margarita!