So I must saying looking over my last blog I am in a much different place right now then I was then. Sometimes this journey of life is so full of ups and downs that it is just easier to ride the waves instead of trying to fight against them. I was talking to a friend last week and she reminded me of this. The feeling of letting go and trusting that you will stay afloat. One of my favorite things to do is to float around in the pool letting my body completely relax and just float along wherever and however it wants. It's gives me such a feeling of relaxation and it feels good to let go and just trust. November had it's definite ups and downs. I did struggle alot with my feelings of worthiness, guilt and self-doubt. I do believe that things happen as they are meant to and being able to trust in this has really helped me this past month. I have been able to deal with alot that I have been pushing somewhere else, keeping busy with work and the kids. It has been so difficult, yet so freeing to have the time to work through this. No matter how hard we try to ignore or block the difficult stuff in our lives, it's still there and doesn't go away. I have been able to let some of this go and have found some peace with things. This is something that I am always looking for - peace. It seems that just as I find some peace somehow I lose track of it and have to look for it again. This is definitely something that comes and goes for me.
When I was younger my parents used to throw these dinner parties cooking up amazing food for our family. We would sit around the dining room table for hours talking about life. I remember one time we wrote down where we thought that we would be in 10 years. I wonder what I wrote. It would be funny to read that now. Knowing my mom she probably still has them tucked away somewhere. To celebrate my sister's birthday this month, my brother-in-law took us all out for dinner at our favorite restaurant - The Round Table. It reminded me so much of those dinners we had years ago at mom and dad's. All of us adults sitting around the table talking and really being able to catch up with each other. It was such a special night and one that I will never forget. My parents have always kept such a strong family connection in us. My sisters are always there for me - always - no matter what. And my brother-in-laws are not in-laws at all but I see them as my actual brothers. They have both been in my life since I was in my teens. We have all been through alot together and I am so thankful to have all of them in my life. xoxo
We received the great news this month that my scan came back stable! We were so relieved, after having two abnormal scans, this was a very welcome surprise. The two tumours have not changed at all in the last three months so this means that the Gamma Knife is doing it's job and hopefully will continue working it's magic. As I waited for these results, like always, I do two things. Hope for the best while preparing for the worst. I have found that this works for me. If I go in adamant that my scans are clear and only thinking positive thoughts I feel devastated if they tell me that they have found something. I know that it is sort of the in thing to do now when you have cancer - think positive, don't let the negativity in. But over the last three years I have learned that this does not help. No one feels positive all the time and to not be honest with how you are really feeling I think is not at all helpful. I feel the best and the most at peace when I am honest with myself and with other people about how I am feeling. So I guess it's time to be honest right now since I'm writing this. I was very relieved to hear that my scan came back stable but at the same time was disappointed that the Gamma Knife didn't shrink them more or even make them disappear altogether. I felt bad about feeling this way because maybe that was selfish of me to want more. My doctors were very happy with these stable results. They are happy that things are not progressing quicker which usually happens with this disease. I am not the norm (my Neurosurgeon says I'm weird) which I'm happy about but I still want more. They are happy with stable and I am still hoping for cured.
The most wonderful thing that I learned at the Callanish Retreat is that it's OK to feel whatever you are feeling. I have always been one to concentrate on the positive and that is not a bad thing. But I have found that when I let the other (negative) feelings in and sit with them they eventually move on without me working hard at flipping them to positive or trying not to notice them. I'm not afraid of feeling sad, worried, angry, frustrated or scared anymore. And have found that by doing this they don't stay - they move along. This leaves room for me to feel truly happy, hopeful, able to love and be loved, proud, joy and peace. There have been so many times in the past month that I have been able to really feel these. Numbing myself to all of the bad feelings that I don't like feeling also numbs all of the great feelings and these I have missed.
I am waiting on some pretty big results right now. Results that will tell me whether or not I would be eligible for a new drug that is being trialed now for metastatic melanoma. If I have the BRAF mutation then this would be a drug that could be a potential future treatment option. 60% of melanomas have this and with this new drug have shown much better outcomes for people with later stage melanoma. I have been wanting to know my BRAF status for a long time so this is a really good thing. You are eligible for the drug when your melanoma becomes inoperable. I havn't been able to understand the thought of waiting until this point before testing the patient. I can't imagine.... You find out that you have inoperable melanoma. They send your pathology off to find out if you are eligible for the drug which takes 3-4 weeks. Now you are desperate for a drug that will give you more time and you have to wait when so much is at stake. I can't imagine. Not to mention that this would mean that you were not receiving any treatment during those 3-4 weeks giving the cancer time to spread. I would much rather be waiting to hear now when so much is not at stake. At least I will know what is in my hand and if I don't have the mutation then I know now and can concentrate on what is in my hand. I have a scan scheduled at the end of the month to see how things are looking in my chest (lungs) so shortly into the new year I will know what's happening. I'm feeling really great having no symptoms so hopefully this is a good sign. I have wound up with a postoperative hernia from my two lung surgeries but we're hoping that this won't require surgery to repair anytime soon.
Yesterday was a big anniversary for me - 3 years since my brain surgery! I was surprised again this year when the anniversary of my diagnosis (Dec.9/09) went by without me even noticing. I remember the date but never think of it on that day. I guess it's really a time that I don't want to remember. It's always the date of my surgery (Dec.15/09) that I really take notice and celebrate. Yesterday I felt so thankful once again for all of the surgeons and surgical staff that took care of me and saved my life. I wondered if they know now that I am still alive and doing great! I know that the feeling at the time was that they were just giving me a bit more time so I wonder if they really know what they did for me and my family. I have celebrated 4 christmases since then with my family. 4 christmases that we weren't sure that we would get to share together. I wish that I could tell them all how much we appreciate what they did and how grateful we are to them. I feel very thankful to all of my medical team - Oncology, Neurosurgery and Gamma Knife teams. Together they have given me the most amazing gift of time......
Watching the news in the last couple of days has really been heartbreaking. So many families grieving. I can't even begin to imagine what they are feeling. To have Christmas quickly approaching and to be dealing with such loss my heart goes out to all of them. I will be praying for all of these families. I will also be cherishing every moment with Jeff and my boys and will be giving them extra hugs and cuddles. We really need to slow down to enjoy what we have all around us.
I feel in my heart that the new year is going to bring peace and healing. I am putting this out there for everyone in the hopes that whatever is happening in your life you may begin to heal and feel the peace in your heart that you deserve. I wish you all a very Merry Christmas with your loved ones and a New Year full of promise, hope and of course great health!
Cheers!
Natalie
Sunday, December 16, 2012
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