Monday, July 17, 2017

Hoping for access

Summer is finally here!  School's finished for another year and now we get to enjoy the next two months together! Although, I've already seen the back to school commercials on TV. Like really?  I just love this time.  Summer is always our time to relax, spend time by the pool and with each other.

I finished radiation the Friday of May long weekend and the whole treatment went really well.  The staff in there is amazing.  They made the whole process very comfortable and so super quick!  Couldn't believe what little time it took each day.  I did have some side effects but it was all manageable.  The fatigue is still hanging on quite a bit but I'm hoping this will improve in the next couple weeks.  I was able to join the student physiotherapy program at Cancer Care and they were able to really help me.  They set me up on an exercise program to help with fatigue and with some muscle strengthening.  Steroids really do a number wasting your muscles, and since it looks like I will be on them long term now I want to do what I can to keep strong.  I did try to wean off the steroids completely but was having too many side effects so will be staying on a low dose.  Now that the radiation is finished we are in this wait and see phase.  I have a brain MRI scheduled  in August and we will see where things are then.  I have been feeling quite well so take this as a good sign that the radiation has done something positive.  Fingers crossed!  

I've been sort of waiting to update my blog until I heard about whether or not I was getting access to the Ipilibumab (Yervoy) immunotherapy but here I am - still waiting.  I have been denied so far by the drug company and by Pharmacare.  I'm hoping to hear this week if my private insurance plan will step up and cover the cost.  It has been quite the process since I'm the first in Manitoba to be accessing this drug in the order that I am.  I was put on the Keytruda first so sort of skipped over the Ipi but it does work very well for some people so it's definitely worth a try.  It's a learning curve for everyone involved which is why each step is taking forever.  I feel at this point like I'm just floating around in limbo waiting and hoping for some good news.  It's been taking so much longer than I thought it would so I'm still trying to be patient but that's not easy.  My family is really feeling it too.  Waiting for anything is never any fun!  Especially something this big and life changing.  This drug could give me more time with my family.  Some people have responded really well to it.  Maybe I would too.

We attended the annual Melanoma Information Night this month and there was some really positive information shared.  Treatments are being combined and working together to give patients longer lives.  Stage 4 patients who would have been once told there was nothing more that could be done now have options.  It's pretty amazing for me to think back to that dismal first information night 7 years ago where there wasn't a lot of great information to be shared as compared to 2017.  Wow!  Things have really come a long way!!!  

Although these last couple of months have not been easy ones, there have been so many wonderful moments at the same time.  We have spent a lot of good quality time with the people we love.  I  have had so much love and support from everyone around me!  This is what I am staying focused on while we wait to hear if I have this next option.

I hope this summer brings you all wonderful time with your loved ones.  Lots of love and laughs!
xo Natalie



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