Monday, May 15, 2017

A New Chapter

Well, I would love to share good news with all of you on this blog but unfortunately this time the news has been very difficult to both process and accept and also to share with my friends & family.  So, I'll just jump right into it.  My latest brain scan came back and it wasn't good.  It looked like I was responding to the new treatment that I was on for a time but this last scan showed that the cancer has progressed and has done so quite quickly.  The tumours have grown and multiplied and the leptomeningeal metastasis has spread into some parts of my brain.  When I first heard this information I was shocked.  I had been feeling pretty good as I talked about in my last post.  I guess the symptoms had sort of been sneaking up on me.  There was some more swelling in the brain so back on the steroids I go.  At least I'll have some energy to get things done around here.  I tend to clean a lot when I'm on them since I wake up at 4 am felling ready to run a marathon.  The LM has been on our radar for many months but usually progresses quite quickly so there was some doubt as to whether or not it was, although my neurosurgeon has always said it was.  But, as we know, my cancer has never followed any sort of rules or really made any sense, thank goodness.  I was given one option for treatment which was whole brain radiation and after much thought and discussion decided to go for it.  The thought of doing nothing was just not for me. This reality has really shifted things for us.  The lingo has really changed.  Quality of life, more time, palliative care and other phrases like this are coming up more and more.  I swing back and forth like a pendulum between being so grateful for the last 7 1/2 years with metastatic cancer and always wanting so much more.  I'm well into my whole brain radiation treatments and actually feeling really good.  I'm done 8 out of the 12 so will finish on Friday.  Yes, my hair is starting to come out but I am planning on going wig shopping very soon to get some new new rockin' hair.  My boys are adamant that they need to be there.  I guess they don't want mom embarrassing them around town!

It's pretty surreal but life continues on.  Made it out to my son's last hockey tournament of the year last weekend.  Radiation in the morning and hockey in the evening.  I always say that life is about balance!  They could have turned the music down a bit but who am I to complain!  Our entire family went away on a family getaway hiking, reading & lounging in the mineral pool this past weekend - all 16 of us.  It was amazing spending that time together!  Time with family - nothing more important!  

Rest assured that I have the most brilliant melanoma doctor taking care of me.  He has been there from Day 1 when I found out that I had metastatic melanoma.  He has gotten me this far because of his expertise and his instincts which have never steered me wrong.  He flies to conferences & meetings around the world always staying front and center of all the new treatments and melanoma research coming available.  He brings that information to Winnipeg in annual information sessions and shares with his patients educating us and always keeping us in the loop.  We have had never-ending discussions in his clinic about what's new and available.  He's always patient with my millions of questions and makes me feel like my opinion matter.  Because he does his job so well I don't need to go out and research cures and treatments.  I can trust in him and spend my time doing what I do best and what's most important to me -  spending time with my loved ones.  So I know that although the thought of some magical cure all for cancer out there in the world can seem within touch, I feel very strongly that I have received and will continue to receive the best possible care available here in Canada or anywhere else in the world.  My health care team is the best and they proved once again over the last few weeks just how awesome they are and I am so grateful for them.

We still have so much hope.  I have always defied the statistics and I plan on continuing to do the same.  Our hope is that the radiation will stabilize things for as long as possible.  I recently had a CT scan of the body done so hopefully that will still be clear.  Will get that news this week.  Fingers crossed!  They are looking into another drug that I may possibly be able to get access too and I haven't tried yet so that is also out there as a possibility.  I sort of skipped over that one because the Pembrolizumab was looking so promising.  That's the thing with these drugs.  They are amazing and bring so much hope to many patients.  The bottom line is though, they either work for you or they don't.  So although I am disappointed that this new drug didn't work for me, I haven't lost hope for other patients or for something new to pop up on the horizon.  You never know in this fast changing field of cancer treatments what is around the corner.

So, we take things day by day enjoying our time together and feeling such love for this precious gift called life.  My boys continue to amaze & inspire me with the way they are handling things.  They are what keep me going every day. It doesn't hurt that I have the best husband in the entire world.  He's there for me and our boys in every way possible keeping a real sense of strength & steadiness in the family.  I am also lucky to have such a close family surrounding me supporting me in every way.  Along with great friends that I am so grateful for.

Since it is Melanoma Awareness month friends - please remember to cover up and protect yourselves from sun damage which can cause skin cancer.  It's not worth the tan!  Embrace the pale, you will thank yourself one day - trust me.  And I beg you to stay out of the tanning beds...  I love this advice that was printed in my radiation information package - Sunbathing and use of tanning booths are NEVER recommended for any person at any time.  Enjoy your time outdoors, just throw on your hat, shades & sunblock!

xoxo Natalie



3 comments:

  1. Your positive beautiful self is beyond words. Xoxo

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  2. I read about you in Canadian Living magazine. I have had 4 stage 1 melanomas and reading about your journey is truly inspirational. Keep up the fight. Xoxo

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    1. So great that you are obviously on top of your skin and taking care of things. Keep that up and thanks for the encouraging words! xoxo

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