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
Monday, November 5, 2012
Cancer/family/work - finding a balance
So doesn't the saying go that when one door closes, another one will open? I sure hope that is true....
I have to admit that the last month has been a rough one. I was looking back at my last post and find it very ironic that I was talking about how grateful I am to be able to work and how important it is to me and here I find myself back on sick leave. I'm not really sure where to begin or how much I should really be discussing on my blog. Will anything I say come back and negatively impact me. Is honesty ever a bad thing?
I will say that I have had to step back from work now finding this a very unsupportive and insensitive environment for me to work in and to be in. My employer was trying to force me to come back full time without the previous work from home accomodations which were working out very well from both sides according to my supervisor. Apparently, the work from home accomodation was only for a 3 month period and they will only accomodate for very short periods so that was the end of that whether my doctor agreed or not. (which he didn't) My doctor had written several notes to my work in the last few months and now I find out that none of these were acceptable according to my work. They were fine at the time but all of a sudden not anymore. Maybe this has something to do with the new HR manager which was recently hired at my work... The stress of having to deal with this on top of my medical situation is simply too much for me at this point. This is the worst that I have felt since the day that I was diagnosed - anger, sadness, frustration.... along with unworthiness, fear of dying (do they not want me because they think that I'm just going to go and die anyway?) Is my best not good enough? Should I just be sucking it up and pushing myself as far as possible for them? Pretending that having cancer doesn't affect me both physically and emotionally. Fortunately, I had just had a performance appraisal done recently which was great so I try to remind myself that it is not me.... They just don't understand.
This has all made me take a hard look at the reality of my life. Why is working so important to me? Well, it's because it makes me feel normal. It convinces me that although I have a shitty diagnosis I am OK right now. I feel that I can still be productive and that I still have a lot to offer the world. Just because I have cancer does not mean that I can't do my job and I think that I've proven that at work over the last year. They want to know way more than what I can possibly tell them. It's hard for me to say that I don't know what will happen. I live day to day hoping for the best trying to live every moment in the moment. I can't look too far into the future because it scares me. I know that I will miss out on so much of my life. Will I be here to see my boys grow up? Birthdays? Graduate? Decide on their careers? Get married? Have children? Chances are I won't be here for some of these events. I feel that in ways my work is throwing this in my face and forcing me to jump ahead and think about some of these really tough things which I wasn't ready to do.
So, lately I'm finding life very hard to cope with. There are days when I don't even want to open my eyes, let alone go out into this scary, harsh world. I feel beaten down. Like no matter what I do I can't get ahead. I have had to pick myself up and put the pieces back together so many times over the past few years that I'm feeling exhausted from it. Yet I have no choice. I'm going for my brain MRI in two weeks to find out if the newly treated tumour has shrunk and if the previously treated tumour has shrunk more. Can I handle hearing any more bad news? Will another tumour show up on this scan? There's so much uncertainty that I feel completely overwhelmed sometimes. When I was at work I could focus on other things and push ahead feeling successful with whatever I was doing.
Financially, things are better and easier with me working. We have to be realistic about this and prepare for the time when I am no longer here and my income is lost. I don't want the family at that time to have major financial worries. They will have enough worries.... I can't imagine the kids losing their mom, then having to pick up and move somewhere else because Jeff can't pay the mortgage on his own. Change schools and move from their home in the middle of everything else. That is one of my worst fears. I've heard that there has been a lot of talk in the media lately about the financial issues that families going through cancer have to face. The government is looking at this from a provincial and a federal level and planning on making some changes in regards to this. I look forward to hearing more about these plans. I would say that maybe allowing their employees who have cancer and who would still like to work keep their jobs would be a really great start! (I work for the provincial government - go figure)
I am grateful that I had the chance to go away to Vancouver on a retreat with the Callanish Society. It was amazing!! It's difficult for me to put into words this experience. I learned so much about myself and with everything that I had to deal with when I got home this retreat couldn't have happened at a better time! It opened me up and let me express some of the feelings that I was trying not to feel or think about. I felt so well cared for and they taught me how to take better care of myself. Whether it's taking the time to relax and have a cup of tea or going for a nice walk. Taking time to listen to what I need and give myself permission to have whatever feelings I am experiencing. I must admit it was very hard coming back to reality - this crazy, fast paced world that we live in. Coming from the peace and quiet up in Brew Creek into the Vancouver airport was sure an adjustment! I loved every minute I had to spend with the other 6 amazing survivors, all of whom I had the opportunity to connect with during these 4 days. I learned a great deal from all of them and know that we are friends for life. Our time together was filled with relaxed chats around the fire, hiking through our beautiful surroundings, hot tub time, art time (which I surprisingly really enjoyed!), nourishing & delicious food made with lots of love, yoga and lots of relaxation & meditation.... I came away with a new found connection with myself and compassion for myself. Opening up in this way leaves you feeling very vulnerable and that can be very scary but I find it all worth it in the end because I feel like a stronger person. This couldn't have come at a better time. I even met up with a friend at the airport for a coffee who I met a couple of years ago through YACC. It was so great catching up with her and being able to debrief with someone who had been through it. It was the perfect ending to a perfect weekend!
I had the opportunity to go in and speak to a couple of groups of medical students last week. I shared my story with them and had some discussion about my experiences with cancer. I think it went really well and I find that the more I share my story the easier it is. I felt completely comfortable opening up to them and wow - they had some really great questions! They looked so young! Hard to believe those are our future doctors! The assignment they were given after we left was to write a letter to themselves which would be given back to them when they graduate about what kind of doctor they would like to be. So cool! They were so eager to learn and understand things from the patient's perspective.
Everything going on with work right now has made me realize how lucky I am to have such amazing and supportive family and friends around me. I have many more people on my side helping me through this then those that are making things more difficult for us. I am so fortunate to have all of you in my life reminding me what is really important in life - which is all of you. Hugs when I feel hopeless, an ear when I need to vent, advice (especially HR related these days) when I have no idea what to do, air miles when I need to escape on a retreat and have no airfare, cab fare and food money slipped into my pocket on the way to the airport, surprise pedicures when I'm feeling really down, scooping me up off the floor when I'm drowning in a pool of my own tears and reassuring me that everything will work out, drinking wine with me when all I want to do is forget everything and not care anymore..... I am thankful for all of this and most importantly, a husband who can handle looking after things when I am not able to and three great boys who I know will grow up to do and accomplish amazing things in this world even if I am not around to see it. People are what matter most - period. This is what makes life memorable and worth living.
I'm not sure what is going to happen next week or next month but I know that for today I will live a meaningful life and enjoy every minute of it. Moments where I can say and believe that it is all worth it like last night sitting around a cozy fire with my hubby and my boys playing guitar and singing. I have that memory forever now and when I'm feeling down I can remember that and feel my heart fill up with joy and love. Life is made up of these moments if we take the time to notice them.... if we don't they pass us by unnoticed and gone forever....
I have to admit that the last month has been a rough one. I was looking back at my last post and find it very ironic that I was talking about how grateful I am to be able to work and how important it is to me and here I find myself back on sick leave. I'm not really sure where to begin or how much I should really be discussing on my blog. Will anything I say come back and negatively impact me. Is honesty ever a bad thing?
I will say that I have had to step back from work now finding this a very unsupportive and insensitive environment for me to work in and to be in. My employer was trying to force me to come back full time without the previous work from home accomodations which were working out very well from both sides according to my supervisor. Apparently, the work from home accomodation was only for a 3 month period and they will only accomodate for very short periods so that was the end of that whether my doctor agreed or not. (which he didn't) My doctor had written several notes to my work in the last few months and now I find out that none of these were acceptable according to my work. They were fine at the time but all of a sudden not anymore. Maybe this has something to do with the new HR manager which was recently hired at my work... The stress of having to deal with this on top of my medical situation is simply too much for me at this point. This is the worst that I have felt since the day that I was diagnosed - anger, sadness, frustration.... along with unworthiness, fear of dying (do they not want me because they think that I'm just going to go and die anyway?) Is my best not good enough? Should I just be sucking it up and pushing myself as far as possible for them? Pretending that having cancer doesn't affect me both physically and emotionally. Fortunately, I had just had a performance appraisal done recently which was great so I try to remind myself that it is not me.... They just don't understand.
This has all made me take a hard look at the reality of my life. Why is working so important to me? Well, it's because it makes me feel normal. It convinces me that although I have a shitty diagnosis I am OK right now. I feel that I can still be productive and that I still have a lot to offer the world. Just because I have cancer does not mean that I can't do my job and I think that I've proven that at work over the last year. They want to know way more than what I can possibly tell them. It's hard for me to say that I don't know what will happen. I live day to day hoping for the best trying to live every moment in the moment. I can't look too far into the future because it scares me. I know that I will miss out on so much of my life. Will I be here to see my boys grow up? Birthdays? Graduate? Decide on their careers? Get married? Have children? Chances are I won't be here for some of these events. I feel that in ways my work is throwing this in my face and forcing me to jump ahead and think about some of these really tough things which I wasn't ready to do.
So, lately I'm finding life very hard to cope with. There are days when I don't even want to open my eyes, let alone go out into this scary, harsh world. I feel beaten down. Like no matter what I do I can't get ahead. I have had to pick myself up and put the pieces back together so many times over the past few years that I'm feeling exhausted from it. Yet I have no choice. I'm going for my brain MRI in two weeks to find out if the newly treated tumour has shrunk and if the previously treated tumour has shrunk more. Can I handle hearing any more bad news? Will another tumour show up on this scan? There's so much uncertainty that I feel completely overwhelmed sometimes. When I was at work I could focus on other things and push ahead feeling successful with whatever I was doing.
Financially, things are better and easier with me working. We have to be realistic about this and prepare for the time when I am no longer here and my income is lost. I don't want the family at that time to have major financial worries. They will have enough worries.... I can't imagine the kids losing their mom, then having to pick up and move somewhere else because Jeff can't pay the mortgage on his own. Change schools and move from their home in the middle of everything else. That is one of my worst fears. I've heard that there has been a lot of talk in the media lately about the financial issues that families going through cancer have to face. The government is looking at this from a provincial and a federal level and planning on making some changes in regards to this. I look forward to hearing more about these plans. I would say that maybe allowing their employees who have cancer and who would still like to work keep their jobs would be a really great start! (I work for the provincial government - go figure)
I am grateful that I had the chance to go away to Vancouver on a retreat with the Callanish Society. It was amazing!! It's difficult for me to put into words this experience. I learned so much about myself and with everything that I had to deal with when I got home this retreat couldn't have happened at a better time! It opened me up and let me express some of the feelings that I was trying not to feel or think about. I felt so well cared for and they taught me how to take better care of myself. Whether it's taking the time to relax and have a cup of tea or going for a nice walk. Taking time to listen to what I need and give myself permission to have whatever feelings I am experiencing. I must admit it was very hard coming back to reality - this crazy, fast paced world that we live in. Coming from the peace and quiet up in Brew Creek into the Vancouver airport was sure an adjustment! I loved every minute I had to spend with the other 6 amazing survivors, all of whom I had the opportunity to connect with during these 4 days. I learned a great deal from all of them and know that we are friends for life. Our time together was filled with relaxed chats around the fire, hiking through our beautiful surroundings, hot tub time, art time (which I surprisingly really enjoyed!), nourishing & delicious food made with lots of love, yoga and lots of relaxation & meditation.... I came away with a new found connection with myself and compassion for myself. Opening up in this way leaves you feeling very vulnerable and that can be very scary but I find it all worth it in the end because I feel like a stronger person. This couldn't have come at a better time. I even met up with a friend at the airport for a coffee who I met a couple of years ago through YACC. It was so great catching up with her and being able to debrief with someone who had been through it. It was the perfect ending to a perfect weekend!
I had the opportunity to go in and speak to a couple of groups of medical students last week. I shared my story with them and had some discussion about my experiences with cancer. I think it went really well and I find that the more I share my story the easier it is. I felt completely comfortable opening up to them and wow - they had some really great questions! They looked so young! Hard to believe those are our future doctors! The assignment they were given after we left was to write a letter to themselves which would be given back to them when they graduate about what kind of doctor they would like to be. So cool! They were so eager to learn and understand things from the patient's perspective.
Everything going on with work right now has made me realize how lucky I am to have such amazing and supportive family and friends around me. I have many more people on my side helping me through this then those that are making things more difficult for us. I am so fortunate to have all of you in my life reminding me what is really important in life - which is all of you. Hugs when I feel hopeless, an ear when I need to vent, advice (especially HR related these days) when I have no idea what to do, air miles when I need to escape on a retreat and have no airfare, cab fare and food money slipped into my pocket on the way to the airport, surprise pedicures when I'm feeling really down, scooping me up off the floor when I'm drowning in a pool of my own tears and reassuring me that everything will work out, drinking wine with me when all I want to do is forget everything and not care anymore..... I am thankful for all of this and most importantly, a husband who can handle looking after things when I am not able to and three great boys who I know will grow up to do and accomplish amazing things in this world even if I am not around to see it. People are what matter most - period. This is what makes life memorable and worth living.
I'm not sure what is going to happen next week or next month but I know that for today I will live a meaningful life and enjoy every minute of it. Moments where I can say and believe that it is all worth it like last night sitting around a cozy fire with my hubby and my boys playing guitar and singing. I have that memory forever now and when I'm feeling down I can remember that and feel my heart fill up with joy and love. Life is made up of these moments if we take the time to notice them.... if we don't they pass us by unnoticed and gone forever....
Monday, October 8, 2012
Happy Thanksgiving!!
I hope that everyone is enjoying their Thanksgiving! It really is so nice to focus on all that we are thankful for and recognize that even if things aren't going exactly the way that we want them to in our lives there are always wonderful things to be grateful for. The whole family got together last night for a yummy Thanksgiving dinner at our place and it was so nice getting to spend this time all together. The kids are growing up so quickly and I love to see them all hanging out together and having fun!
We are very grateful for a few months of non-cancer time as I am not going in for any more tests or appointments until November. I was hoping to stay away from hospitals during this time but unfortunately I have wound up there a couple of times in the last month.....I had a dizzy spell at work which ended up to be nothing serious. They did a CT scan and it didn't show any changes in the brain so that was good. It was thought that maybe I had been overdoing things, not keeping hydrated and needed to slow down a bit. So that's what I did but as I was climbing up in my closet a few days later I fell and broke my foot. So...... back to the hospital we went were it was confirmed that my foot was broken and I had torn a couple of ligaments in there. This has forced me to slow down since I have been in a boot cast for the past 3 weeks. It seems to be healing very quickly and I am looking forward to getting rid of this boot for good.
I find it difficult to go in to get treatment for non-cancer things since I really don't like going through my whole history every time I go in. I try to just slip it in when they ask about my health like it's no big deal. Oh yeah and I have Metastatic Melanoma... As soon as they saw my chart then the questions came up like "Were you dizzy when you fell?" "Were you aware when you fell?" "Do any of the treatments you were on cause bone weakening?" It's like when you have cancer you have to explain every normal thing that happens. No, I was stupidly trying to hoist myself up to grab something and missed. Period. That's it. It's not like when you have cancer you are exempt from all the normal illnesses and accidents that happen to people. Those things happen to us too. My niece's response to hearing about my fall was "Does Auntie Natalie know that she is not a child anymore?" LOL! How many times have I told the boys not to climb up on their shelves for things? I just learned this lesson a little later in life I guess.
I was fortunate enough not to have to take any time off work during the last few weeks. I was able to work from home during this time which has been great! Being able to work is very important to me. I didn't realize how important until I was told that I would never be able to work again when I was first diagnosed. It makes me feel independent and like I am contributing to something. Since my kids are all in school now there is no point in me sitting at home all day. I just feel better about myself and hopfully I'll be able to do this for a very long time.
I am very excited about my trip to Vancouver this week!! I am going on a 4 day Callanish Retreat for young adults. I have been wanting to go on a retreat with Callanish for the last couple of years and finally got an opportunity so I jumped at it. This is a healing retreat and I am looking forward to having some time to reflect on all that has happened and find some peace and strength from this. I am a little nervous about travelling this far on my own since I have never done this before but at the same time am feeling that it is just what I need right now. So, Vancouver here I come!!!
I hope that you all enjoy the long weekend with your loved ones!
Happy Thanksgiving!!!
We are very grateful for a few months of non-cancer time as I am not going in for any more tests or appointments until November. I was hoping to stay away from hospitals during this time but unfortunately I have wound up there a couple of times in the last month.....I had a dizzy spell at work which ended up to be nothing serious. They did a CT scan and it didn't show any changes in the brain so that was good. It was thought that maybe I had been overdoing things, not keeping hydrated and needed to slow down a bit. So that's what I did but as I was climbing up in my closet a few days later I fell and broke my foot. So...... back to the hospital we went were it was confirmed that my foot was broken and I had torn a couple of ligaments in there. This has forced me to slow down since I have been in a boot cast for the past 3 weeks. It seems to be healing very quickly and I am looking forward to getting rid of this boot for good.
I find it difficult to go in to get treatment for non-cancer things since I really don't like going through my whole history every time I go in. I try to just slip it in when they ask about my health like it's no big deal. Oh yeah and I have Metastatic Melanoma... As soon as they saw my chart then the questions came up like "Were you dizzy when you fell?" "Were you aware when you fell?" "Do any of the treatments you were on cause bone weakening?" It's like when you have cancer you have to explain every normal thing that happens. No, I was stupidly trying to hoist myself up to grab something and missed. Period. That's it. It's not like when you have cancer you are exempt from all the normal illnesses and accidents that happen to people. Those things happen to us too. My niece's response to hearing about my fall was "Does Auntie Natalie know that she is not a child anymore?" LOL! How many times have I told the boys not to climb up on their shelves for things? I just learned this lesson a little later in life I guess.
I was fortunate enough not to have to take any time off work during the last few weeks. I was able to work from home during this time which has been great! Being able to work is very important to me. I didn't realize how important until I was told that I would never be able to work again when I was first diagnosed. It makes me feel independent and like I am contributing to something. Since my kids are all in school now there is no point in me sitting at home all day. I just feel better about myself and hopfully I'll be able to do this for a very long time.
I am very excited about my trip to Vancouver this week!! I am going on a 4 day Callanish Retreat for young adults. I have been wanting to go on a retreat with Callanish for the last couple of years and finally got an opportunity so I jumped at it. This is a healing retreat and I am looking forward to having some time to reflect on all that has happened and find some peace and strength from this. I am a little nervous about travelling this far on my own since I have never done this before but at the same time am feeling that it is just what I need right now. So, Vancouver here I come!!!
I hope that you all enjoy the long weekend with your loved ones!
Happy Thanksgiving!!!
Monday, September 3, 2012
Precious Family Time
I can't believe that summer is coming to an end and the kids are going back to school on Wednesday. It always feels like summer flies by every year but this year it feels especially short! I'm looking forward to getting everyone back into a routine but it sure has been nice not having to make all those lunches every day!! Coming up with new lunch ideas is always challenging!
We had an incredible time in Kenora for the long weekend! It was nice visiting with everyone and we all had lots of fun as usual! Lots of beach time, jumping on the trampoline, lounging on the island, walks and amazing fireworks! Thanks again to the Lindsays! Love you guys!
Just after we got home from our great weekend it was time to go in for Gamma Knife. They were able to get me in earlier so on the 13th I went in for my treatment. I should back up a little and say that the week before I had quite a few appointments. I met with my Neurosurgeon, went for my bone scan and met with my oncologist. Everything was looking good for Gamma and that afternoon the nurse called to let me know that a spot had opened up for the following week. I was super happy about that since I wasn't at all happy about waiting so long. When I met with my oncologist he had fantastic news - all scans were clear! We were so relieved! (once again) There had been no spread anywhere else! I can't help but think of all the "what if's" when I'm waiting to hear my results. So when I hear such great news it's just such a relief and I felt this overwhelming sense of happiness and gratitude. So gamma knife to treat the new tumour and that's it! I can handle that.
Gamma Knife went very well and very quick. This time I was the first one through and my treatment was only 20 minutes. I'm getting to be a pro at this procedure! I was super nervous though going in for this but having my amazing nurse there taking care of me helped. She has been there for all 3 of my gamma knife surgeries and it's so nice to have someone you know and trust looking after you. Makes things alot easier. The morning went very smoothly and I was back at home around lunchtime. I especially felt very grateful when I heard that one of the other patients there was from Vancouver and had to fly all the way here to get treatment. They don't have Gamma there! I know I say this alot but we are so fortunate to have this equipment and these doctors here! I would not even be here right now without it! I also found out that they are now able to treat spinal metastases and some other bone mets with this same technology. Amazing how far things have come in the last few years!
I have been feeling pretty good since and went back to work the following week. I have started working from home three days a week to avoid my long commute and to save some of my energy. Kaden tells me almost every morning that I'm working from home how much he loves that I'm at home when he wakes up. It has been so nice having this extra time with the boys! It has been working out great and I am able to find a good balance with everything.
We have been having a great long weekend so far. Jeff's family came for 4 days and it was so nice spending time with them and catching up with everyone. We took the kids to the Nature Playground at Assiniboine Park and they had lots of fun there. What a neat park!! My nephews both thought that the best part of their visit was the swimming! They did lots of that even though the water is cooling off pretty quickly. My family came over last night to celebrate my birthday which was nice. I feel very grateful for every birthday that I'm here to see. (I know I sound like an old lady but it's true) So we have been surrounded by family and that has been so nice. It's so great that we both have fantastic families that we love to spend time with!
So, now we have until November before I go in for anymore scans or appointments. I now look so forward to these 3 month breaks when I get them. My brain MRI in November will tell us how things are looking up there and if the Gamma is working the way that we hope it will. I will also be having more frequently scheduled CT's because of the recent spread we want to make sure that we find any other spread quickly. There have been a few new drugs come out for melanoma which are in clinical trials but since my disease is fairly controlled at this time we will wait for that. (Hopefully I will never need them)
So now it's back to how I can help my body which is where I always look when I'm done the treatments they have to offer me. Eating well, exercising and living well. I know that alot of this is needing to feel some control over my disease. Feeling like what I do can make a difference. Will it prevent another recurrence for me? Maybe - maybe not. But I believe that it will help me to stay strong enough to live through another recurrence. Unfortunately my juicer/blender broke down so I'll be in the market for another one of those. Anyone know of a good one? Mine was great but the cheap plastic on it didn't hold up. I'll be looking for a heavy duty one that I can use every day.
I hope that you all had a great summer and were able to spend lots of time with your loved ones! This time that we get is what's most important!
Now, time to enjoy my big day!! I think I'll go for a walk!!!
We had an incredible time in Kenora for the long weekend! It was nice visiting with everyone and we all had lots of fun as usual! Lots of beach time, jumping on the trampoline, lounging on the island, walks and amazing fireworks! Thanks again to the Lindsays! Love you guys!
Just after we got home from our great weekend it was time to go in for Gamma Knife. They were able to get me in earlier so on the 13th I went in for my treatment. I should back up a little and say that the week before I had quite a few appointments. I met with my Neurosurgeon, went for my bone scan and met with my oncologist. Everything was looking good for Gamma and that afternoon the nurse called to let me know that a spot had opened up for the following week. I was super happy about that since I wasn't at all happy about waiting so long. When I met with my oncologist he had fantastic news - all scans were clear! We were so relieved! (once again) There had been no spread anywhere else! I can't help but think of all the "what if's" when I'm waiting to hear my results. So when I hear such great news it's just such a relief and I felt this overwhelming sense of happiness and gratitude. So gamma knife to treat the new tumour and that's it! I can handle that.
Gamma Knife went very well and very quick. This time I was the first one through and my treatment was only 20 minutes. I'm getting to be a pro at this procedure! I was super nervous though going in for this but having my amazing nurse there taking care of me helped. She has been there for all 3 of my gamma knife surgeries and it's so nice to have someone you know and trust looking after you. Makes things alot easier. The morning went very smoothly and I was back at home around lunchtime. I especially felt very grateful when I heard that one of the other patients there was from Vancouver and had to fly all the way here to get treatment. They don't have Gamma there! I know I say this alot but we are so fortunate to have this equipment and these doctors here! I would not even be here right now without it! I also found out that they are now able to treat spinal metastases and some other bone mets with this same technology. Amazing how far things have come in the last few years!
I have been feeling pretty good since and went back to work the following week. I have started working from home three days a week to avoid my long commute and to save some of my energy. Kaden tells me almost every morning that I'm working from home how much he loves that I'm at home when he wakes up. It has been so nice having this extra time with the boys! It has been working out great and I am able to find a good balance with everything.
We have been having a great long weekend so far. Jeff's family came for 4 days and it was so nice spending time with them and catching up with everyone. We took the kids to the Nature Playground at Assiniboine Park and they had lots of fun there. What a neat park!! My nephews both thought that the best part of their visit was the swimming! They did lots of that even though the water is cooling off pretty quickly. My family came over last night to celebrate my birthday which was nice. I feel very grateful for every birthday that I'm here to see. (I know I sound like an old lady but it's true) So we have been surrounded by family and that has been so nice. It's so great that we both have fantastic families that we love to spend time with!
So, now we have until November before I go in for anymore scans or appointments. I now look so forward to these 3 month breaks when I get them. My brain MRI in November will tell us how things are looking up there and if the Gamma is working the way that we hope it will. I will also be having more frequently scheduled CT's because of the recent spread we want to make sure that we find any other spread quickly. There have been a few new drugs come out for melanoma which are in clinical trials but since my disease is fairly controlled at this time we will wait for that. (Hopefully I will never need them)
So now it's back to how I can help my body which is where I always look when I'm done the treatments they have to offer me. Eating well, exercising and living well. I know that alot of this is needing to feel some control over my disease. Feeling like what I do can make a difference. Will it prevent another recurrence for me? Maybe - maybe not. But I believe that it will help me to stay strong enough to live through another recurrence. Unfortunately my juicer/blender broke down so I'll be in the market for another one of those. Anyone know of a good one? Mine was great but the cheap plastic on it didn't hold up. I'll be looking for a heavy duty one that I can use every day.
I hope that you all had a great summer and were able to spend lots of time with your loved ones! This time that we get is what's most important!
Now, time to enjoy my big day!! I think I'll go for a walk!!!
Wednesday, July 25, 2012
Out, damn'd spot! Out I say! - Shakespeare
What a great quote!
As I log in to my blog and see the title of my last post "Fears of Recurrence", I can't help but think to myself "Well, I guess it wasn't such a crazy fear to have after all".
I was hoping to have more time with NED (No Evidence of Disease) but that just isn't the way that it is going to be for now. I talked to my nurse last week and she had both good and bad news for me. The good news is that it looks like the Gamma Knife procedure I had in April is working. My tumour has shrunk from 6 mm to 2 mm. Yayyyy!!!! Unfortunately, we were under the impression that when I went in for Gamma I walked out with a dead tumour but we come to find out that this isn't so. The radiation works over time, killing off the tumour slowly. They are very pleased with the way that my body is responding to the gamma so I won't need to have the tumour treated again. It will hopefully keep dying until it is completely inactive.
The bad news was that a new tumour showed up on my brain MRI. It is a small one in the temporal lobe this time so this is the one that I am going in to have Gamma for on the 23rd of August. I have had no symptoms from this and am actually feeling pretty good. I'm finding a great work/family life balance and making sure that I get some me time to look after my body. I've been going to Curves three times a week with a girl from work which has been a great pick-me-up at lunch time. It leaves me with more energy and feeling good. I've started running too which is new to me since I never thought that I could run before. Never thought of myself as a runner until last week when I was going through the park and another runner ran by and asked how my run was going. I thought "Wow, I guess I am running". (I still take lots of walking breaks in between to give my body a break) I love my new Nike app to track my progress.
So, it's hard to think that I'm still sick when I'm able to do so much. I'm so grateful that my body is fighting back and not giving in to the cancer. My care providers have been amazing! I've already had a CT done of my chest, abdomen, pelvis and neck since we need to now start looking around again for new tumours. I have a bone scan scheduled for next week and the following day I am in to see my oncologist to hear all the results. Hopefully, everything will once again come back clear and I will just have to go in for Gamma. Not sure about all the radiation and what this will do to my body but right now I can't worry about that. The quicker we find these things, the better my chances will be. I'm not too happy about waiting until the 23rd because I do know this about melanoma - it moves fast and is completely unpredictable. It could spread and pop up anywhere. I will be meeting with my Neurosurgeon next week and will hopefully be able to get my gamma bumped up. The scan showed that there is some swelling around the tumour and the last thing I need right now is complications from that. So even though we all need summer vacations and time away from work, including the hospital staff, cancer doesn't take the summer off. It almost seems like it's better to have a recurrence in the winter when everyone is around and available.
We have been having a great summer so far. My garden is doing awesome and I love going out into the back yard and picking fresh organic veggies for meals. The kids are even eating swiss chard and kale! Can't wait for the tomatoes to ripen! We are really looking forward to our weekend in Kenora and are excited to hear that the whole clan will be there this year. We have had a very relaxing summer so far going out to both Winnipeg Beach and Grand Beach for day trips and spending lots of time in the pool with all this hot weather we have been having.
Although things aren't perfect I look around and am still grateful for so much. Things could be so much worse and every day I am thankful for my life. When you have someone tell you that you don't have much time left and then you are still, not only here but living an amazing life, 2 1/2 years later how can you not feel blessed? Our challenges in life make us stronger people and make our relationships stronger. I'm learning so much about myself, who I am and who I want to be. Before this journey began I was at my first retreat and they asked us who we were. Not a wife, mother, daughter, sister but who we were on our own, inside. I couldn't think of an answer. I felt lost. What do I like? Do I like hockey? Do I like action movies? Do I like Nerf guns? (Only when I'm not on the receiving end) I like all of those things but only because I live in a house full of boys. A couple of months ago Jeff took the boys out for the evening and at home alone I had no idea what to even do with myself. I watched the hockey game, had a beer and watched Fast and the Furious. Sometimes I get lost in this house full of boys and don't pay attention to what I like or what I want. When you have kids your life gets so busy and all about everyone else. It's good to sit back every once and a while and ask yourself "who am I"?
I am so very grateful for the good thoughts, positive vibes and prayers that are being sent our way. To have all the support from our family and friends makes this journey so much easier.
Enjoy the summer and live every moment!!
P.S. Please don't forget to cover up and wear your sunscreen!!!
As I log in to my blog and see the title of my last post "Fears of Recurrence", I can't help but think to myself "Well, I guess it wasn't such a crazy fear to have after all".
I was hoping to have more time with NED (No Evidence of Disease) but that just isn't the way that it is going to be for now. I talked to my nurse last week and she had both good and bad news for me. The good news is that it looks like the Gamma Knife procedure I had in April is working. My tumour has shrunk from 6 mm to 2 mm. Yayyyy!!!! Unfortunately, we were under the impression that when I went in for Gamma I walked out with a dead tumour but we come to find out that this isn't so. The radiation works over time, killing off the tumour slowly. They are very pleased with the way that my body is responding to the gamma so I won't need to have the tumour treated again. It will hopefully keep dying until it is completely inactive.
The bad news was that a new tumour showed up on my brain MRI. It is a small one in the temporal lobe this time so this is the one that I am going in to have Gamma for on the 23rd of August. I have had no symptoms from this and am actually feeling pretty good. I'm finding a great work/family life balance and making sure that I get some me time to look after my body. I've been going to Curves three times a week with a girl from work which has been a great pick-me-up at lunch time. It leaves me with more energy and feeling good. I've started running too which is new to me since I never thought that I could run before. Never thought of myself as a runner until last week when I was going through the park and another runner ran by and asked how my run was going. I thought "Wow, I guess I am running". (I still take lots of walking breaks in between to give my body a break) I love my new Nike app to track my progress.
So, it's hard to think that I'm still sick when I'm able to do so much. I'm so grateful that my body is fighting back and not giving in to the cancer. My care providers have been amazing! I've already had a CT done of my chest, abdomen, pelvis and neck since we need to now start looking around again for new tumours. I have a bone scan scheduled for next week and the following day I am in to see my oncologist to hear all the results. Hopefully, everything will once again come back clear and I will just have to go in for Gamma. Not sure about all the radiation and what this will do to my body but right now I can't worry about that. The quicker we find these things, the better my chances will be. I'm not too happy about waiting until the 23rd because I do know this about melanoma - it moves fast and is completely unpredictable. It could spread and pop up anywhere. I will be meeting with my Neurosurgeon next week and will hopefully be able to get my gamma bumped up. The scan showed that there is some swelling around the tumour and the last thing I need right now is complications from that. So even though we all need summer vacations and time away from work, including the hospital staff, cancer doesn't take the summer off. It almost seems like it's better to have a recurrence in the winter when everyone is around and available.
We have been having a great summer so far. My garden is doing awesome and I love going out into the back yard and picking fresh organic veggies for meals. The kids are even eating swiss chard and kale! Can't wait for the tomatoes to ripen! We are really looking forward to our weekend in Kenora and are excited to hear that the whole clan will be there this year. We have had a very relaxing summer so far going out to both Winnipeg Beach and Grand Beach for day trips and spending lots of time in the pool with all this hot weather we have been having.
Although things aren't perfect I look around and am still grateful for so much. Things could be so much worse and every day I am thankful for my life. When you have someone tell you that you don't have much time left and then you are still, not only here but living an amazing life, 2 1/2 years later how can you not feel blessed? Our challenges in life make us stronger people and make our relationships stronger. I'm learning so much about myself, who I am and who I want to be. Before this journey began I was at my first retreat and they asked us who we were. Not a wife, mother, daughter, sister but who we were on our own, inside. I couldn't think of an answer. I felt lost. What do I like? Do I like hockey? Do I like action movies? Do I like Nerf guns? (Only when I'm not on the receiving end) I like all of those things but only because I live in a house full of boys. A couple of months ago Jeff took the boys out for the evening and at home alone I had no idea what to even do with myself. I watched the hockey game, had a beer and watched Fast and the Furious. Sometimes I get lost in this house full of boys and don't pay attention to what I like or what I want. When you have kids your life gets so busy and all about everyone else. It's good to sit back every once and a while and ask yourself "who am I"?
I am so very grateful for the good thoughts, positive vibes and prayers that are being sent our way. To have all the support from our family and friends makes this journey so much easier.
Enjoy the summer and live every moment!!
P.S. Please don't forget to cover up and wear your sunscreen!!!
Sunday, June 24, 2012
Fears of Recurrence
So I can't believe that it's been so long since my last post. Life has just been busy I guess. We had a great trip out to Alberta and had a blast. Drumhellar was amazing and Edmonton was lots of fun!! It was so nice to get away from everything for a week. I barely thought about cancer the whole time we were gone. This was partly due to the fact that shortly before we left we went in to Cancer Care to find out the results of my scans and we were ecstatic to find out that they had all come back clear! There was no melanoma spread anywhere else so this was obviously was a huge relief. Whenever I do have a recurrence it's always a worry that it spread to more than just that area. I had a very thorough work up done and nothing was found so we were really able to relax and enjoy our time away.
I sometimes find it hard to process everything that has happened and honestly finding out about this last brain tumour does not feel real at all. It was a whirlwind to say the least - finding out about it and then within weeks having it treated. I took a couple of days off work and then that was it. Life resumed back to normal almost immediately which was great but I find myself now when I have a quiet moment having to try to push it somewhere back in my mind. The chance of recurrence seems more likely every time that I hear those words, "We found something on your scan". I try to just be grateful to have today and that my treatments have worked so far but sometimes I feel that it's just not good enough. Why should I have to be just thankful to have today when I want so much more? The fear of recurrence has actually changed into a fear of untreatable cancer. When I start feeling this way I then feel guilty for it because of all of those that I know have been lost to this disease. Who am I to not be grateful for even still being here? It's such a strange wave of emotions to be stranded in. When we face our fears new ones seem to arise. It's strange - I've had so many people tell me that their greatest fear was having brain mets until they met me. My greatest fear was always having a recurrence and now that I've got that under my belt a few times over, my fear has turned into having my cancer spread to my bones. I have met survivors whose cancer has spread to their bones and their fear is of something else. We all fear different things and it seems that once we overcome that fear a new one sneaks up behind us.
There have been huge advances made in the last couple of years for melanoma patients but is it good enough. Recently, a man from Toronto has been in the media with his family basically begging for a chance to go on a drug which is in clinical trials and is showing great promise in the treatment of late stage melanoma. He is being denied this opportunity - he has metastatic melanoma with brain mets. Obviously, this struck a nerve for my family and we were all very confused and upset that this is happening. His oncologist thinks that this drug may help and he is dying so what is there to lose? Some drugs are given on a compassionate basis but this one is not yet. Sometimes certain rules make absolutely no sense. Is this how the clinical trials work? Hand pick the healthiest of your group of patients, try them on the drug and then quickly close the trial and post your results showing how wonderful your drug works. How about showing a true portrayal of a drug and its effects on all patients. Just because a person has advanced disease does not mean that they are not a good candidate for a drug trial. For example, I could be refused for certain drug trials because of my brain mets even though I am a relatively healthy, young patient. But people with brain mets don't have a high chance of survival so they wouldn't want to use me in their trial because I may bring down their numbers.
How ridiculous - maybe I would survive and bring their numbers up and show their drug to be a miracle drug. So, I hope that whoever has the power; whether it's the drug company or Health Canada will give this man a chance at more life. Darcy has three young children who would like their Dad to be around longer. If you havn't seen this story in the media there is a petition that has almost 200, 000 signatures on it requesting compassionate access be given to him. They have a page on Facebook called Help Save Darcy that you can go to for more information. Now, on the other hand I do understand how the drug companies need to be careful not to give out these drugs freely, especially when only phase 1 testing has been done on them. They don't know the exact dose to give or for how long so the need for further testing is definitely there but if someone is going to die anyway what is the harm in letting them try it, especially if they are willing to accept the risks....
We are sure glad that the rain clouds have gone away for the past few days and let the sun come out and shine. The kids have been swimming lots and spending lots of time outside playing which is great. I will be taking a day a week off for the summer to slow down and spend some time with the kids and my work is allowing me to work from home once a week so this will be so much better for us. I am finding the commute and working 5 days a week exhausting right now and want to spend as much time with my kiddos as I can. I am really craving some quiet time and time to just hang out with my family. We havn't planned much in the way of summer plans but of course are looking forward to our weekend in Kenora with the Lindsays. Things seem to get so busy and then before you know it the week is over so I'm going to concentrate on slowing things down and not getting hung up on the formalities of life. It's time to kick back, relax and enjoy the summer!!! I hope you all get the chance to do the same!!!
I sometimes find it hard to process everything that has happened and honestly finding out about this last brain tumour does not feel real at all. It was a whirlwind to say the least - finding out about it and then within weeks having it treated. I took a couple of days off work and then that was it. Life resumed back to normal almost immediately which was great but I find myself now when I have a quiet moment having to try to push it somewhere back in my mind. The chance of recurrence seems more likely every time that I hear those words, "We found something on your scan". I try to just be grateful to have today and that my treatments have worked so far but sometimes I feel that it's just not good enough. Why should I have to be just thankful to have today when I want so much more? The fear of recurrence has actually changed into a fear of untreatable cancer. When I start feeling this way I then feel guilty for it because of all of those that I know have been lost to this disease. Who am I to not be grateful for even still being here? It's such a strange wave of emotions to be stranded in. When we face our fears new ones seem to arise. It's strange - I've had so many people tell me that their greatest fear was having brain mets until they met me. My greatest fear was always having a recurrence and now that I've got that under my belt a few times over, my fear has turned into having my cancer spread to my bones. I have met survivors whose cancer has spread to their bones and their fear is of something else. We all fear different things and it seems that once we overcome that fear a new one sneaks up behind us.
There have been huge advances made in the last couple of years for melanoma patients but is it good enough. Recently, a man from Toronto has been in the media with his family basically begging for a chance to go on a drug which is in clinical trials and is showing great promise in the treatment of late stage melanoma. He is being denied this opportunity - he has metastatic melanoma with brain mets. Obviously, this struck a nerve for my family and we were all very confused and upset that this is happening. His oncologist thinks that this drug may help and he is dying so what is there to lose? Some drugs are given on a compassionate basis but this one is not yet. Sometimes certain rules make absolutely no sense. Is this how the clinical trials work? Hand pick the healthiest of your group of patients, try them on the drug and then quickly close the trial and post your results showing how wonderful your drug works. How about showing a true portrayal of a drug and its effects on all patients. Just because a person has advanced disease does not mean that they are not a good candidate for a drug trial. For example, I could be refused for certain drug trials because of my brain mets even though I am a relatively healthy, young patient. But people with brain mets don't have a high chance of survival so they wouldn't want to use me in their trial because I may bring down their numbers.
How ridiculous - maybe I would survive and bring their numbers up and show their drug to be a miracle drug. So, I hope that whoever has the power; whether it's the drug company or Health Canada will give this man a chance at more life. Darcy has three young children who would like their Dad to be around longer. If you havn't seen this story in the media there is a petition that has almost 200, 000 signatures on it requesting compassionate access be given to him. They have a page on Facebook called Help Save Darcy that you can go to for more information. Now, on the other hand I do understand how the drug companies need to be careful not to give out these drugs freely, especially when only phase 1 testing has been done on them. They don't know the exact dose to give or for how long so the need for further testing is definitely there but if someone is going to die anyway what is the harm in letting them try it, especially if they are willing to accept the risks....
We are sure glad that the rain clouds have gone away for the past few days and let the sun come out and shine. The kids have been swimming lots and spending lots of time outside playing which is great. I will be taking a day a week off for the summer to slow down and spend some time with the kids and my work is allowing me to work from home once a week so this will be so much better for us. I am finding the commute and working 5 days a week exhausting right now and want to spend as much time with my kiddos as I can. I am really craving some quiet time and time to just hang out with my family. We havn't planned much in the way of summer plans but of course are looking forward to our weekend in Kenora with the Lindsays. Things seem to get so busy and then before you know it the week is over so I'm going to concentrate on slowing things down and not getting hung up on the formalities of life. It's time to kick back, relax and enjoy the summer!!! I hope you all get the chance to do the same!!!
Monday, April 23, 2012
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