Tuesday, September 20, 2016

Back on the Roller Coaster

Soooo......  This summer has not been quite what I had hoped for. I was very happy at my appointment in June to be given the summer off from cancer care but silly me - thinking that I had any control over what cancer does. July was wonderful as we enjoyed our time away from the busy scheduled life during the school year.  We spent a lot of time out on the deck and enjoying the pool.  We drove up to Swan River for Jeff's sister's beautiful wedding and spent some long overdue time visiting with family. So great to reconnect with everyone again!  We celebrated a lot, as this summer was full of milestones for our family. Birthdays, anniversaries, graduations....  lots of parties happening around here!

Meanwhile, at the end of July I went in for my regularly scheduled brain MRI and I received a call a few days later. My neurosurgeon wanted to see me.  My heart dropped.  He never wants to see me so something must be up.  We would need to wait until after the long weekend for his next clinic day with no clue as to what this must mean.  This was difficult to say the least as I usually feel much more in control of what is happening.  My health care providers are usually much more open about what I can expect and this has made it so much easier on all of us.  But not this time, they wouldn't give me any further information.  I called my oncologist's office and my regular nurse was away.  Great just my luck!  The nurse was so very sweet and contacted my doctor right away who was also very concerned about this.  He scheduled an urgent CT scan of my body to see if there had been any changes there.  So we made it through the weekend trying to distract ourselves and not get too worried.  A few bottles glasses of wine helped a lot!

The appointment was both relieving & scary as shit.  The cancer in my brain has progressed.  The largest tumour being over 2 cm which is the second largest tumour I have ever had up there.  The other smudges on the scan were consistent in size & shape with similar ones that I had before which were gamma knifed.   So I would be scheduled for gamma knife ASAP and these would all be treated.  I left there feeling sick to my stomach but also glad that they could treat them.  I had been stable for well over a year so this news really burst my bubble that I had been floating around in.  The following day I was in to see my oncologist and received the results of my body CT scan.  Good news!  Everything is still stable.  A few lymph nodes had increased in size but that could be from anything really so not super concerning right now.  We were all very relieved to hear this news but my doctor was really not impressed with my brain MRI results so was scheduling me to start a new chemotherapy ASAP.  He felt that I was not responding to my current meds enough anymore and it was time for a change.  We were in shock.  This would mean that I would be starting on the next treatment (my last available treatment here in Manitoba at the moment).  The pharmacist came in to discuss side effects, etc - for any of you that have had the new chemo side effects chat - it's not fun.  They tell you all of the horrible things that may or may not happen to you from starting a new drug.  Her voice became more and more muffled as I eventually blocked her out entirely. My mom doesn't even remember her being there which goes to show how unpleasant of an experience it was.  Just block it out and go to your happy place.  So I was being scheduled to have a port-a-cath inserted and would start the new treatment as soon as I had gamma knife.

The next day, my neurosurgeon calls me.  He had taken my case to brain tumour rounds the day before and there was some concern raised about me going in for gamma knife.  Apparently, this tumour had been gamma knifed twice already and they were thinking that it wasn't a good idea to treat it again.  Now, having had brain mets for almost 7 years and already having gamma knife surgery 5 times they aren't sure what the effects would be.  As he put it, we are treading in new waters here and we don't want to cause more of a problem.  My symptoms have been pretty minimal.  I had just started having head aches and nothing major.  They were surprised that I am not having anything strange happening with my left side since the tumour is on the right side of the brain and apparently I could be noticing some funny feelings, which I am not.  So the decision was made to do a more specialized MRI which was called a spectroscopy MRI.  This would show more of what the tissue is made up.  I had this done a few days later and it showed inflammation & necrotic tissue was making the tumour seem larger than what it really is. If you are confused at this point join the club! I figure even my doctors aren't quite sure what to make of things at this point so how should I be able to?  So my two specialists have a phone conversation and decide that we will hold off on starting the new treatment and will do another scan mid October to see what's changed. They don't want to jump in and intervene when I am really not having a lot of symptoms right now.  We don't want to be causing any problems that I don't need.  He did speak to me about possibly needing surgery to go in and clean things up. Not liking the idea of that but we'll see.

So now we wait for the next scan ..... It's been a wild couple of months that's for sure! So up and down and I am just trying to ride the waves without drowning.  It's a good thing that I have complete faith & trust in my doctors and the decisions they make.  Sometimes I tend to get very focused on that and doing a lot of research on my own.  But for now I will focus on taking care of myself and my family and letting things go.  I will focus on the present and right now I'm feeling pretty good so I will stick with that.  The boys are all getting back into the fall routine with back to school, hockey, volleyball, working...  Life goes on and we do the best we can at making it great!

I had an awesome 41st birthday this month!  Jeff took me out for an amazing dinner, we got together with family for cake and then the following weekend I enjoyed a day at the spa and a girls' night out with friends. What a great way to celebrate another year and also to relax & laugh and let some stress go as we lit up the dance floor!  We celebrated Jeff's 40th in August when his family was down visiting but his big day was actually this past weekend.  Now he can't bug me about still being in his 30's.  We're both in our 40's now babe!!  There has definitely been lots to celebrate!

This weekend I will be walking in the Strides for Melanoma walk here in Winnipeg and feel that it is more important than ever.  Being faced with the reality that my treatment options are dwindling is very scary.  There is still a lot of work & research to do!  I often hear people talk about a cure for cancer but it's not that simple.  There won't be one cure for cancer.  Each cancer is so different & unique and not all drugs work for all people so there will never just be one blanket cure all.  There have been many breakthrough medications released in the past few years and I hope & pray that this continues.

This summer I have been reminded that life is messy.  It doesn't always go as planned and we sometimes really struggle.  For me it's about finding balance in living my amazing life and working through all the tough stuff.  I find myself relying on the things that I have learned on retreat and from others to stay afloat; self care, living in the moment,  having faith, trust & gratitude for the things that are good in our lives (and when all else fails a nice glass of wine and some good laughs or sometimes a good cry).  Thank you to all of my family & friends who have been there the last several weeks to keep me going.  Whether I've spoken to you about what's going on or not I know that I have a lot of cheerleaders out there and I so appreciate that.  I am one lucky girl to have such a strong circle of support around me!

xoxo Natalie



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