Wednesday, May 22, 2013

Thankfulness & Exciting Adventures!!

Finally, it looks like summer is here!!!  Time to get out into the yard and start thinking about what to plant this year.  I can't wait to get some seeds in the ground for those yummy, fresh veggies. 

I'll start with how well gamma knife went....  It was great!  Now people laugh at me when I say this but I can't even describe the relief that I felt finding out that my tumours are shrinking!  Like I said in my last blog I was very nervous to have that MRI done just before my treatment because I wasn't sure what these tumours had been doing over the past several weeks.  The neurosurgeon came in to the room and asked if I was on any chemotherapy because they were having trouble finding them on the scan.  The MRI showed that the largest of the two tumours was undetectable!  Gone!  The other tumour was still there, but teeny tiny and a new tiny tumour was detected.  This new one, once they looked back on my previous scan, was actually there but was so small that it was missed.  These two small tumours were easily treated and I was back home before noon. 

We were thrilled with this and I was anxious to have my CT done of the rest of my body to see if the rest were responding the same way.  I had my CT done last week and spent the weekend agonizing over what the results would be.  It is so hard when you are waiting to hear such important information.  Would the Vemurafinib be working as well on the rest of my body?  I had a dream on the weekend that despite being on chemo, the cancer had spread even more through my abdomen.  I woke up terrified and it took me a few minutes before I realized that it was just a dream.  I can't stand those dreams that feel so real that when you wake up in the morning it's like you lived it all through the night and so you feel exhausted.  This happens to me often and I guess is my way of letting my fears out.  Because of this I decided that I would be more realistic with my expectations for this scan.  I couldn't help but hope that all the tumours would be undetectable on the scan and that they would tell me that I was back to No Evidence of Disease.  I am missing Ned!  I changed my expectations to hoping that nothing new would show up on this scan and that the tumours were stable, not growing in size.  At times it is so difficult to get in to the mental head space where you are hoping for the best but at the same time prepared for the worst case scenario. 

So we were very happy this morning to hear that I am responding to the Vemurafinib with all tumours shrinking and one in my chest has actually resolved.  Many of them have shrunk to half the size as my last scan!  This news I can be very happy with!  We spoke to the doctor a little more about how the trials are looking at this point, as this drug is so new that they are still uncertain of long term success rates.  There are a group of patients which are still responding after 24 months with the average length of response being 6 months.  My doctor is holding another information session in a few weeks, once he's back from his conference, to share the new treatments and advances being made.  Will definitely be going to that!  Information is power! 

It's sometimes difficult for us to feel that we are getting anywhere with the treatment of cancer.  People are still getting diagnosed every day, still going through difficult treatments and surgeries, and are sometimes still dying.  It's hard not to wonder if we keep pumping more money into cancer research will it really make a difference?  Where does all the money go?  Why is it taking so long?  My kids have even asked us all of these questions.  I really don't know the answers but I do know that it IS making a difference.  It sometimes just feels that we are making baby steps.  But, I can personally say that because of cancer research I am still alive.  Surgery and Gamma knife saved my life giving me more time.  That time has enabled me to be here while they have researched and developed the new drug that I am now on which is right now keeping my disease under control.  This is not only giving me more time to be with my family and to watch my boys as they grow but it is also giving the researchers more time to develop better, longer lasting treatments.  I think that it is important to look at these steps and to see how far we have come even in recent years.  I am very thankful to everyone who helps raise funds to help in the fight against cancer.  Whether it's walking, running, cycling, climbing, horseback riding.....  The list goes on and on and sometimes we get a little tired of donating our money only to wonder what difference it will really make.  Trust me, it does make a difference!  We may not be talking a cure yet, but it is definitely making a difference with the management and treatment of cancer.  So a big thank you to everyone out there who is getting involved and making a difference.  With this, the day will come when cancer will become a very treatable illness!

In one of my previous posts I talked about travelling and how much I would like to do some travelling with the family in the near future.  We have been doing some planning after talking to my health care professionals and it is going to happen!  The Love family is on our way to Disney World!!!  :)  The boys were very disappointed when I was strongly cautioned about traveling out of the country but because of the fact that I am doing well right now we are going to go for it!  I did also find out that I do have full travel health coverage in spite of my health condition now so we don`t have to worry about that.  We are getting a lot of help from family in order to make this happen and are overwhelmed with how much everyone is wanting to help make this trip very special for us.  Everything has just fallen in to place as things do when they are meant to be so although, this feels a little last minute I know that it will be amazing!  I can`t wait to see the boys faces as they enjoy every minute of Disney.  They are even excited just to fly on an airplane so I can`t imagine they`re reactions as we experience the fun Disney has to offer!!!!

Well, I`d better get packing!!
Hope you all are enjoying the start to summer and are doing what you love!!

xo   Natalie

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