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
Gamma Knife - Take 2
We are very happy and relieved to have this second Gamma Knife procedure over with. It all went pretty well and I am once again very grateful that Manitoba is one of only three provinces which offers it. It was an early morning having to be there for 5:45 am. I didn't sleep much the night before feeling anxious about what was going to happen the next day so was up in plenty of time. My sister, Laura came and picked me up and we headed to the hospital. There were three of us in admitting and I could tell that the other two people were even more nervous than I was. The man sitting across from us was quietly singing Christmas carols to his wife trying to make her feel better. So sweet! Like he said though a little late for christmas songs. Still can't decide if it's easier the second time around because you know what to expect or harder because you know what to expect! One of my nurses was the same one I had last time and it was really nice having a familiar face there looking after me. I have been so lucky to have really fabulous nurses through Gamma. They call me every three months with my results and we have a little chat about how things are looking. She has taken the time to discuss things with me and reassure me which makes the whole process that much easier and I so appreciate it. This time I was the last to have my headframe put on.
After the headframe was attached I was taken down to MRI for my scan. There was talk that maybe one of the screws that was put in was too long. They paged another physicist and the neurosurgeon and in the end decided to replace it with a smaller one. Yikes!! I was not too happy about that but what can you do? He put the new one in and it wasn't too bad. They got me all hooked up and in place in the MRI machine and we got that part over with. It is such an exact science getting everything measured and lined up and took quite some time. My sister was very calming and comforting for me as at times I started to freak out a little bit. There is something about having a metal frame screwed into your head and then being secured into a metal tube that makes you feel a little freaked out. Go figure!! Anyway, it was time to head back to gamma knife so they give me my tool box and start wheeling me down the hall. I can only imagine what that looked like... It was very strange to be carrying this tool box which looked like they came out of someone's garage (only cleaner) and knowing that they actually used them on me. Weird!
So now we all got fed breakfast and waited as the doctors looked at our MRI's and came up with treatment plans for each of us. My other sister, Christine came and the three of us visited and laughed and I even did a little Zumba which must have looked hilarious because my sisters were killing themselves laughing. I went out to the washroom and got a few funny looks with my new headgear on. I almost went up and said, "What, do I have something in my teeth?" with a big grin which you could barely see through the metal contraption. Through all the laughter, I have to admit I was super nervous waiting. I just kept thinking of the worst case scenerio... They come back and say "sorry, the cancer has spread and we can't do anything for you", they take the frame off and send me home. I know I'm supposed to stay positive about everything but sometimes that fear sneaks in and I have to deal with it. So I brought myself back to reality.
The other two patients were told that their treatments would be around 20 minutes so that was good. Nice and quick. I start thinking to myself are they waiting to tell me because it's bad news? So I finally ask the nurse who goes and talks to the doctor. She comes back and let us know that everything looked good. The scan showed that the tumour had not grown or changed since my last MRI. What a relief! My treatment would only take 18 minutes! Much shorter than last time which was closer to an hour long. The surgeon came and talked to us and answered all of the questions that we had. It seems that I am weird which is a really good thing. It's what you want at this point - to be different. I had done a bit of reading up on brain stem metastasis and basically it is not a good thing. I was very relieved to hear my surgeon say that we would just keep on doing the brain scans and when something shows up get in right away for Gamma Knife. Simple.
I had gone out and picked up a CD to listen to - Ingrid Michaelson - one of my new favorites. The second song that came on was just right for this occasion *This is War*. A perfect cancer fighting song! "I won't surrender. I will fight better. You knocked me out. You knocked me down but I will find my way around. Someone's got to lose. It's not gonna be this girl this time." So many songs about heartbreak you can totally relate to having cancer after all cancer is like a bad boyfriend that breaks your heart again and then just won't go away right? So I listend to the first 4 or 5 songs on the CD in the Gamma machine and surgeon says as he's unhooking me, "If you want I can leave you in so you can listen to the rest." I'm like "No thanks. I'm good. I'll just listen to it when I get home." So they remove all the devices attached to me and take the screws out. Finally! What a relief. Now I should say that during Gamma Knife I felt nothing. The gamma rays beam in and all meet at the tumour and destroy it and I feel nothing. It's amazing. I am told to watch for swelling which sometimes happens in the first month after gamma. I would feel funny if this happens - lightheaded, dizzy, weird. This time the headache only lasted about 1/2 an hour and after a little lunch I was on my way home. I stopped by my Mom and Dad's to let them know that everything went well and that I was fine then I headed home for a nap. I had talked to Jeff earlier as he kept tabs on me through my sisters and he is always there for me if and when I need him. I am very fortunate to have all of this support and it makes it so that it's not always the same person carrying it all. We can spread it out a little bit. It works for us.
So then Friday rolled around and it was time for my bone scan. My doctor scheduled another batch of scans for me since the cancer spread we want to make sure that it's not anywhere else. I went in and had my injection of some kind of radioactive dye and then we went to Polo Park to do a little shopping. My sister got yelled at in Ricki's for touching the clothes hook. They seem to be very protective over that thing!! So crazy! Anyway, after a little shopping and some lunch we headed back to the hospital for my scan. It was very quick and we were home in no time. It was actually a really nice day! The weekend I was drained and feeling exhausted and Saturday morning I woke up with the right side of my face swollen. I could barely open my eye. I didn't worry too much about it because I was told that this could be one of the side effects of having the frame on in gamma. I went back to work on Monday and was actually feeling pretty good. My swelling went down and I had a pretty good week. Just a little more tired than usual. I have been walking every night and even started running a bit. Whenever I find out that the cancer is back I always go through this slump where I don't feel like doing anything and I eat whatever I want. What's the point sort of attitude. Then when I'm recovered a bit from surgery I get this blast of energy and feel like I need to move. I think that is my way of fighting back. Making me feel like I have some control in this. I end up feeling better because of it. This is where I am right now. I am feeling pretty great! I have my CT scan tonight and then next week I meet with my doctor to get all of my results. Will be so glad to know that there is nothing else going on in my body.
I want to say thank you for all of the prayers, good thoughts and positive energy being sent my way. It helps to have all of the love and support from all of you. I love the quilt that Auntie Debbie made with all of the well wishes and photographs on it. Thank you to everyone who contributed to it. It is beautiful and a reminder of how many are cheering for me and my family. The meals were much appreciated from my cousins, aunt and uncle. So nice to have them in the freezer and not have to worry about what to make for supper. The kids love them and they are really healthy and delicious too!! I am very grateful to the doctors and nurses looking after me and the technology which has made sure that I stick around longer than ever expected. Jeff and I have planned a road trip next month with the kids so we are very much looking forward to this getaway and to spending some time having fun together. This last month has been another stress filled one so once we get all the rest of my results back it will be nice to go and have some fun!
It's sometimes hard to find the good in life but usually if you look hard enough it is there. It may be just that the sun is shining or that your favorite movie is on TV or your favorite song on the radio. I will never forget laying in bed in the hospital waiting to have my colonoscopy and one of my favorite Bon Jovi songs comes on the radio "It's my life". It made it all seem somehow better. OK, life isn't so bad. Sometimes I have to dig a little deeper than other times but there is usually something there for me to hold on to. Oh, and when there's not there's always wine with gold flakes in it! That makes things seem better too!! (hee hee)
Love, laugh and have fun!!
After the headframe was attached I was taken down to MRI for my scan. There was talk that maybe one of the screws that was put in was too long. They paged another physicist and the neurosurgeon and in the end decided to replace it with a smaller one. Yikes!! I was not too happy about that but what can you do? He put the new one in and it wasn't too bad. They got me all hooked up and in place in the MRI machine and we got that part over with. It is such an exact science getting everything measured and lined up and took quite some time. My sister was very calming and comforting for me as at times I started to freak out a little bit. There is something about having a metal frame screwed into your head and then being secured into a metal tube that makes you feel a little freaked out. Go figure!! Anyway, it was time to head back to gamma knife so they give me my tool box and start wheeling me down the hall. I can only imagine what that looked like... It was very strange to be carrying this tool box which looked like they came out of someone's garage (only cleaner) and knowing that they actually used them on me. Weird!
So now we all got fed breakfast and waited as the doctors looked at our MRI's and came up with treatment plans for each of us. My other sister, Christine came and the three of us visited and laughed and I even did a little Zumba which must have looked hilarious because my sisters were killing themselves laughing. I went out to the washroom and got a few funny looks with my new headgear on. I almost went up and said, "What, do I have something in my teeth?" with a big grin which you could barely see through the metal contraption. Through all the laughter, I have to admit I was super nervous waiting. I just kept thinking of the worst case scenerio... They come back and say "sorry, the cancer has spread and we can't do anything for you", they take the frame off and send me home. I know I'm supposed to stay positive about everything but sometimes that fear sneaks in and I have to deal with it. So I brought myself back to reality.
The other two patients were told that their treatments would be around 20 minutes so that was good. Nice and quick. I start thinking to myself are they waiting to tell me because it's bad news? So I finally ask the nurse who goes and talks to the doctor. She comes back and let us know that everything looked good. The scan showed that the tumour had not grown or changed since my last MRI. What a relief! My treatment would only take 18 minutes! Much shorter than last time which was closer to an hour long. The surgeon came and talked to us and answered all of the questions that we had. It seems that I am weird which is a really good thing. It's what you want at this point - to be different. I had done a bit of reading up on brain stem metastasis and basically it is not a good thing. I was very relieved to hear my surgeon say that we would just keep on doing the brain scans and when something shows up get in right away for Gamma Knife. Simple.
I had gone out and picked up a CD to listen to - Ingrid Michaelson - one of my new favorites. The second song that came on was just right for this occasion *This is War*. A perfect cancer fighting song! "I won't surrender. I will fight better. You knocked me out. You knocked me down but I will find my way around. Someone's got to lose. It's not gonna be this girl this time." So many songs about heartbreak you can totally relate to having cancer after all cancer is like a bad boyfriend that breaks your heart again and then just won't go away right? So I listend to the first 4 or 5 songs on the CD in the Gamma machine and surgeon says as he's unhooking me, "If you want I can leave you in so you can listen to the rest." I'm like "No thanks. I'm good. I'll just listen to it when I get home." So they remove all the devices attached to me and take the screws out. Finally! What a relief. Now I should say that during Gamma Knife I felt nothing. The gamma rays beam in and all meet at the tumour and destroy it and I feel nothing. It's amazing. I am told to watch for swelling which sometimes happens in the first month after gamma. I would feel funny if this happens - lightheaded, dizzy, weird. This time the headache only lasted about 1/2 an hour and after a little lunch I was on my way home. I stopped by my Mom and Dad's to let them know that everything went well and that I was fine then I headed home for a nap. I had talked to Jeff earlier as he kept tabs on me through my sisters and he is always there for me if and when I need him. I am very fortunate to have all of this support and it makes it so that it's not always the same person carrying it all. We can spread it out a little bit. It works for us.
So then Friday rolled around and it was time for my bone scan. My doctor scheduled another batch of scans for me since the cancer spread we want to make sure that it's not anywhere else. I went in and had my injection of some kind of radioactive dye and then we went to Polo Park to do a little shopping. My sister got yelled at in Ricki's for touching the clothes hook. They seem to be very protective over that thing!! So crazy! Anyway, after a little shopping and some lunch we headed back to the hospital for my scan. It was very quick and we were home in no time. It was actually a really nice day! The weekend I was drained and feeling exhausted and Saturday morning I woke up with the right side of my face swollen. I could barely open my eye. I didn't worry too much about it because I was told that this could be one of the side effects of having the frame on in gamma. I went back to work on Monday and was actually feeling pretty good. My swelling went down and I had a pretty good week. Just a little more tired than usual. I have been walking every night and even started running a bit. Whenever I find out that the cancer is back I always go through this slump where I don't feel like doing anything and I eat whatever I want. What's the point sort of attitude. Then when I'm recovered a bit from surgery I get this blast of energy and feel like I need to move. I think that is my way of fighting back. Making me feel like I have some control in this. I end up feeling better because of it. This is where I am right now. I am feeling pretty great! I have my CT scan tonight and then next week I meet with my doctor to get all of my results. Will be so glad to know that there is nothing else going on in my body.
I want to say thank you for all of the prayers, good thoughts and positive energy being sent my way. It helps to have all of the love and support from all of you. I love the quilt that Auntie Debbie made with all of the well wishes and photographs on it. Thank you to everyone who contributed to it. It is beautiful and a reminder of how many are cheering for me and my family. The meals were much appreciated from my cousins, aunt and uncle. So nice to have them in the freezer and not have to worry about what to make for supper. The kids love them and they are really healthy and delicious too!! I am very grateful to the doctors and nurses looking after me and the technology which has made sure that I stick around longer than ever expected. Jeff and I have planned a road trip next month with the kids so we are very much looking forward to this getaway and to spending some time having fun together. This last month has been another stress filled one so once we get all the rest of my results back it will be nice to go and have some fun!
It's sometimes hard to find the good in life but usually if you look hard enough it is there. It may be just that the sun is shining or that your favorite movie is on TV or your favorite song on the radio. I will never forget laying in bed in the hospital waiting to have my colonoscopy and one of my favorite Bon Jovi songs comes on the radio "It's my life". It made it all seem somehow better. OK, life isn't so bad. Sometimes I have to dig a little deeper than other times but there is usually something there for me to hold on to. Oh, and when there's not there's always wine with gold flakes in it! That makes things seem better too!! (hee hee)
Love, laugh and have fun!!
Friday, March 23, 2012
Loss and Living
It's been a while since I last posted and this is for two reasons. The first is because I've been busy with life. Enjoying my family, spending lots of time at the rink as hockey winds down for the season, getting out and loving this spring weather that we've been having. The other reason is that I am not quite sure what to say. My YACC family has experienced several losses over the past month. Young, vibrant, adults once full of life whose lives have been taken much too soon by this damn disease. Some of these people I only briefly connected with and others more so. I feel a loss everytime I receive an email letting me know about another friend. It's been something I've thought alot about. Is it better to not put myself out there and connect with others so that I don't have to feel the hurt when they leave us? I always come to the same conclusion - my life is better having met them. I learn from others experiences. It helps me with my own. Maybe someone elses perspective makes sense to me and changes my own. I have realized that I just need a way to cope with this loss. I need to do something with it. I've been trying really hard to not think too much about it, try not to feel it but guess what? It's still there and not going anywhere! It's all part of being caught up in the cancer world.
Of course when you're thinking about death it won't be long until you start thinking about you're own - especially if you have cancer. There are so many layers of feelings there. Feelings of sadness, empathy, fear, guilt.... I've been reading many of my friends' words expressing all of these feelings which tells me that I'm not alone with these feelings. The fact that I feel this way is a normal part of this cancer experience. And this is when I really realize how important these connections are to me. It makes me feel a part of a bigger world, makes me feel like I'm not the only one, like what I'm going through is normal. And if there's one thing that us cancer survivors want to feel - it's normal! So to Adam, Andreanne & Julie - you will always be in our hearts. We will remember you and hold on to the good memories that were made in Ottawa. To all of my fellow cancer warriors and support super heros - we are all in this together and can look to each other for support and understanding. We can lean on others "that get it" and find ways to cope with the hard feelings together. I send my love to you all. xoxo
A couple of weeks ago was our girls' night out - Brain MRI & dinner. Every 3 months I go for a brain MRI and this has turned into our regular girls' night out. My mom, sisters and I head over to the hospital for my MRI and then usually go for dinner and drinks after. This time we went for the MRI then out for dinner and decided to go bowling. It was Friday night after all! It was a really fun night and I love the fact that I am never voted Designated Driver. A perk of being the one with cancer!! So thankful to have such a great mom & sisters that are always there for me and make going through these tests and procedures fun! So during my MRI I try to meditate and not let my imagination run wild but this never works. Focus on your breathing I keep repeating to myself. Instead I couldn't help but wonder if the three people in the booth behind the glass windows could read my mind. Would certain areas of my brain light up or something and show them what I'm thinking about? Could they see my thoughts? So I spent the whole rest of my time in the MRI trying to keep my thoughts clean and rated PG. This actually worked and made the time go by super quick. Note to self - I really need to come up with some better ways to pass the time while I'm in there.
So I assumed, because I didn't hear otherwise, that my brain MRI came back once again as stable. So, on Wednesday when I got home from work and Jeff & I played the message on the answering machine that said, "Hi Natalie - it's gammaknife calling. You can just give us a call back at your earliest convenience @ ***-****" I was a little anxious but reassured myself that it's been a couple of weeks. They are just calling to let me know that it's stable, which has been the case for the past 2 years. So I call back and of course everyone's gone home for the day so I leave a message. Jeff and I aren't worried and are sure that it's fine. I went to work yesterday and after not hearing back from them by 11:00 I decide to give them a call. I hear the words that I am always afraid to hear. "Something has shown up on your scan." Shit!! Seriously? You are kidding me? No, unfortunately not. OK like she's going to say, Yep. Just kidding! You're fine. Have a nice day! OK, where is it? Is it in the same place as the last one? Now what?
So after a lengthy conversation I find out that I have a tumour on my pons. (Kaden thinks that word is so funny - pons. He's 7. He laughs hysterically when you say it.) This spot wasn't seen on my last scan so we've caught it very early and it is only 3 mm small. It is actually no where near the first brain tumour which was higher up in the brain. The plan is to do Gamma Knife Surgery again which they have already booked for me on April 11th. I was obviously shocked at this news but like I said to my nurse, I was hoping to never have a recurrence in the brain again but knew that it was certainly a possibility. I decided to take off from work early for the day so my sister came out to pick me up. My first instinct was to get out of there before I started crying or something. (Now, that would be horrible) Too late! Thank goodness the girl I work with is very understanding and sweet! Jeff got home as quickly as he could and we all had a little pow wow at mom and dad's. It's almost like we need to group together and feel united to figure out our plan of action.
And so here we go once again... I feel grateful that I have had the past few months to live normally, to enjoy life. I am grateful to have such a loving family. I am grateful that this tumour can be treated. My doctor is confident that we can get it with Gamma Knife. My kids are amazing and I see that we can really learn from them. My 10 year old said last night,"No problem Mom. I am not worried at all. This one is nothing!" I am grateful for an amazing husband who reassures me that everything is going to be alright. I am grateful for a wonderful boss who called me last night to let me know that they've got my back and are there for me. I am grateful for a whole community of others with cancer that I have connected with - both young adults and my melanoma friends.
Another reminder for me to live life to its fullest and not to take even one minute for granted. xoxo
Of course when you're thinking about death it won't be long until you start thinking about you're own - especially if you have cancer. There are so many layers of feelings there. Feelings of sadness, empathy, fear, guilt.... I've been reading many of my friends' words expressing all of these feelings which tells me that I'm not alone with these feelings. The fact that I feel this way is a normal part of this cancer experience. And this is when I really realize how important these connections are to me. It makes me feel a part of a bigger world, makes me feel like I'm not the only one, like what I'm going through is normal. And if there's one thing that us cancer survivors want to feel - it's normal! So to Adam, Andreanne & Julie - you will always be in our hearts. We will remember you and hold on to the good memories that were made in Ottawa. To all of my fellow cancer warriors and support super heros - we are all in this together and can look to each other for support and understanding. We can lean on others "that get it" and find ways to cope with the hard feelings together. I send my love to you all. xoxo
A couple of weeks ago was our girls' night out - Brain MRI & dinner. Every 3 months I go for a brain MRI and this has turned into our regular girls' night out. My mom, sisters and I head over to the hospital for my MRI and then usually go for dinner and drinks after. This time we went for the MRI then out for dinner and decided to go bowling. It was Friday night after all! It was a really fun night and I love the fact that I am never voted Designated Driver. A perk of being the one with cancer!! So thankful to have such a great mom & sisters that are always there for me and make going through these tests and procedures fun! So during my MRI I try to meditate and not let my imagination run wild but this never works. Focus on your breathing I keep repeating to myself. Instead I couldn't help but wonder if the three people in the booth behind the glass windows could read my mind. Would certain areas of my brain light up or something and show them what I'm thinking about? Could they see my thoughts? So I spent the whole rest of my time in the MRI trying to keep my thoughts clean and rated PG. This actually worked and made the time go by super quick. Note to self - I really need to come up with some better ways to pass the time while I'm in there.
So I assumed, because I didn't hear otherwise, that my brain MRI came back once again as stable. So, on Wednesday when I got home from work and Jeff & I played the message on the answering machine that said, "Hi Natalie - it's gammaknife calling. You can just give us a call back at your earliest convenience @ ***-****" I was a little anxious but reassured myself that it's been a couple of weeks. They are just calling to let me know that it's stable, which has been the case for the past 2 years. So I call back and of course everyone's gone home for the day so I leave a message. Jeff and I aren't worried and are sure that it's fine. I went to work yesterday and after not hearing back from them by 11:00 I decide to give them a call. I hear the words that I am always afraid to hear. "Something has shown up on your scan." Shit!! Seriously? You are kidding me? No, unfortunately not. OK like she's going to say, Yep. Just kidding! You're fine. Have a nice day! OK, where is it? Is it in the same place as the last one? Now what?
So after a lengthy conversation I find out that I have a tumour on my pons. (Kaden thinks that word is so funny - pons. He's 7. He laughs hysterically when you say it.) This spot wasn't seen on my last scan so we've caught it very early and it is only 3 mm small. It is actually no where near the first brain tumour which was higher up in the brain. The plan is to do Gamma Knife Surgery again which they have already booked for me on April 11th. I was obviously shocked at this news but like I said to my nurse, I was hoping to never have a recurrence in the brain again but knew that it was certainly a possibility. I decided to take off from work early for the day so my sister came out to pick me up. My first instinct was to get out of there before I started crying or something. (Now, that would be horrible) Too late! Thank goodness the girl I work with is very understanding and sweet! Jeff got home as quickly as he could and we all had a little pow wow at mom and dad's. It's almost like we need to group together and feel united to figure out our plan of action.
And so here we go once again... I feel grateful that I have had the past few months to live normally, to enjoy life. I am grateful to have such a loving family. I am grateful that this tumour can be treated. My doctor is confident that we can get it with Gamma Knife. My kids are amazing and I see that we can really learn from them. My 10 year old said last night,"No problem Mom. I am not worried at all. This one is nothing!" I am grateful for an amazing husband who reassures me that everything is going to be alright. I am grateful for a wonderful boss who called me last night to let me know that they've got my back and are there for me. I am grateful for a whole community of others with cancer that I have connected with - both young adults and my melanoma friends.
Another reminder for me to live life to its fullest and not to take even one minute for granted. xoxo
Saturday, January 28, 2012
A Second Chance
Well, time has been flying by around here it seems like. Being back to work has been fantastic. We are finally able to find our routine and I realize how much I missed this. Jeff and I have never both worked a Monday to Friday job at the same time so it has been really nice to have every week night and weekend together as a family. I have been feeling great and am actually surprised at the energy I have. This is the best I have felt in over two years and I am thankful every day when I wake up that I have this energy. I was driving to work on Tuesday remembering what a Tuesday on Interferon felt like. I would wake up feeling exhausted, nauseous & achey all over and it took everything for me just to get out of bed and get the kids off to school. As soon as they were out the door I was heading back to bed for a nap. Tuedays were always horrible because having had the weekend off the Interferon, I think it was a shock once again to my system when I injected that dose Monday night. So I drove to work last Tuesday feeling full of gratitude for being able to get up with energy, ready to start my day.
I have been reflecting alot on the past two years and still have trouble letting things all sink in. It really does feel almost like a dream. Like none of this could have really happened. Brain surgery, gamma knife, 2 lung surgeries, a year on Interferon which took me one and a half years, needles, a PICC line, biopsies and scans... and the hardest test of all - always waiting for someone to tell me what the results were. Was the surgery successful? Did the treatment work?(this we will never know) Is it cancer? Is there more cancer? How far has it spread? What's the plan? These are all questions that have flown through my mind almost constantly through the past couple of years. I love now having these questions replaced with - What should I make for supper tonight? What are we going to do this weekend? What am I going to wear to work tomorrow?
Of course, it's not like cancer has disappeared from my mind completely but I am on somewhat of a break from the constant thoughts which have been on my mind for the past 2 years. For a long time, I couldn't even think about the future. I had to stay focused on the here and now. If I looked too far ahead I would get a sick feeling in my stomach as I wondered whether or not I would be here still. It's fun now for Jeff and I to talk about taking off somewhere hot next winter for a holiday or planning renovations on our house or where we are going to go for our summer holidays. These are all things that we couldn't discuss before and I couldn't picture for a long time ever being able think about again.
I was surprised a few weeks ago when we were in the dressing room just after Kaden's hockey game and he says to me, "Mom, really bad things happen on Friday the 13th. I sure hope your cancer doesn't come back". It took me back and I wasn't sure how to respond but reassured him that I feel great and it being Friday the 13th wasn't going to make my cancer come back. Wow! What goes through his little mind really surprises me sometimes. So although it's maybe not on the top of all of our minds right now, it is still there.
My mom was telling me that when she went out for lunch the other day there was an elderly mother and her daughter sitting at the table beside them. The daughter was telling her mother about a piano recital which would be taking place in the Spring and she was inviting her to come along. She says to her mother "Maybe you would like to come and see it if you're still alive then." My mom was shocked that she would say this to her mother but laughed at them having a sense of humour about death. I can totally relate to this only it would be me saying "Yes, that would be lovely. If I'm still here in a couple of months I would love to join you". When things get really tough and tense it relieves this feeling if you can laugh about it. My mom and I were at the store picking out "Thank you" cards and this was just before my brain surgery. My eyes drifted down to the "Thank you for your sympathies" cards so I picked out the ones that I liked the most and pointed them out to my mom "just in case" I said to her laughing. We both got a good laugh. I guess you had to be there because reading this now it just sounds plain weird. But I really feel that I would rather laugh about it then cry about it. So this is just how my family deals I guess.
I started a Zumba class a few weeks ago and even though I am totally uncoordinated and out of shape I absolutely love it! I love that I can do it (or somewhat flailing around on the gym floor doing my own thing more or less) but that I can actually, physically move. Cancer treatments drained the life out of me and now I feel that life pouring back into me and it feels like nothing I have ever felt before. Before cancer I took all of this for granted. During my Interferon treatments many times I would dance around my room with the music blaring and would collapse on my bed totally exhausted but happy. Something so simple and it's one of the things that got me through that year. So it feels great to be able to move and I will never take this for granted again. I really missed it on the days that I was stuck in bed recovering from a surgery or with my head throbbing from Interferon.
I have also been trying alot of different at home excerise DVD's my favorite so far is a walking program using resistance bands. Love it and feel like I've had a great work out afterward. I have learned alot about how much excerise can help fight off disease of all kinds - especially cancer and I just feel so much better and full of energy when I've had a good workout. I also attribute my new found energy boost to my every morning green smoothie habit. Spinach, swiss chard or kale; some frozen fruit, a little water and I'm good to go. Sometimes I add a little almond butter or flax seed or agave, depending on what I feel like. I have been paying special attention to my diet and this is really helping me to feel healthy and hopefully will help my body stay healthy.
I think often of all of my friends going through their cancer treatments and although I'm through the tough stuff for now I don't forget what it's like. I felt many times that it would never be over, that I would be feeling that horrible forever. There didn't seem to be an end in sight and the only end that I could see was a terrifying one. This is why it is so hard to believe that I have come out the other side feeling this way. My wish for anyone going through cancer is that you keep hoping and dreaming of a healthy life, that you can stay positive most of the time (I think that it is unrealistic and unhealthy to be completely positive 24/7), that you believe in yourself and in what you can accomplish and that you can surround yourself with loving, caring people who will help you to get through all the tough stuff.
I will be enjoying every minute of the next five weeks feeling very grateful for this second chance!
Believe!
Hope!
Laugh!
Natalie
I have been reflecting alot on the past two years and still have trouble letting things all sink in. It really does feel almost like a dream. Like none of this could have really happened. Brain surgery, gamma knife, 2 lung surgeries, a year on Interferon which took me one and a half years, needles, a PICC line, biopsies and scans... and the hardest test of all - always waiting for someone to tell me what the results were. Was the surgery successful? Did the treatment work?(this we will never know) Is it cancer? Is there more cancer? How far has it spread? What's the plan? These are all questions that have flown through my mind almost constantly through the past couple of years. I love now having these questions replaced with - What should I make for supper tonight? What are we going to do this weekend? What am I going to wear to work tomorrow?
Of course, it's not like cancer has disappeared from my mind completely but I am on somewhat of a break from the constant thoughts which have been on my mind for the past 2 years. For a long time, I couldn't even think about the future. I had to stay focused on the here and now. If I looked too far ahead I would get a sick feeling in my stomach as I wondered whether or not I would be here still. It's fun now for Jeff and I to talk about taking off somewhere hot next winter for a holiday or planning renovations on our house or where we are going to go for our summer holidays. These are all things that we couldn't discuss before and I couldn't picture for a long time ever being able think about again.
I was surprised a few weeks ago when we were in the dressing room just after Kaden's hockey game and he says to me, "Mom, really bad things happen on Friday the 13th. I sure hope your cancer doesn't come back". It took me back and I wasn't sure how to respond but reassured him that I feel great and it being Friday the 13th wasn't going to make my cancer come back. Wow! What goes through his little mind really surprises me sometimes. So although it's maybe not on the top of all of our minds right now, it is still there.
My mom was telling me that when she went out for lunch the other day there was an elderly mother and her daughter sitting at the table beside them. The daughter was telling her mother about a piano recital which would be taking place in the Spring and she was inviting her to come along. She says to her mother "Maybe you would like to come and see it if you're still alive then." My mom was shocked that she would say this to her mother but laughed at them having a sense of humour about death. I can totally relate to this only it would be me saying "Yes, that would be lovely. If I'm still here in a couple of months I would love to join you". When things get really tough and tense it relieves this feeling if you can laugh about it. My mom and I were at the store picking out "Thank you" cards and this was just before my brain surgery. My eyes drifted down to the "Thank you for your sympathies" cards so I picked out the ones that I liked the most and pointed them out to my mom "just in case" I said to her laughing. We both got a good laugh. I guess you had to be there because reading this now it just sounds plain weird. But I really feel that I would rather laugh about it then cry about it. So this is just how my family deals I guess.
I started a Zumba class a few weeks ago and even though I am totally uncoordinated and out of shape I absolutely love it! I love that I can do it (or somewhat flailing around on the gym floor doing my own thing more or less) but that I can actually, physically move. Cancer treatments drained the life out of me and now I feel that life pouring back into me and it feels like nothing I have ever felt before. Before cancer I took all of this for granted. During my Interferon treatments many times I would dance around my room with the music blaring and would collapse on my bed totally exhausted but happy. Something so simple and it's one of the things that got me through that year. So it feels great to be able to move and I will never take this for granted again. I really missed it on the days that I was stuck in bed recovering from a surgery or with my head throbbing from Interferon.
I have also been trying alot of different at home excerise DVD's my favorite so far is a walking program using resistance bands. Love it and feel like I've had a great work out afterward. I have learned alot about how much excerise can help fight off disease of all kinds - especially cancer and I just feel so much better and full of energy when I've had a good workout. I also attribute my new found energy boost to my every morning green smoothie habit. Spinach, swiss chard or kale; some frozen fruit, a little water and I'm good to go. Sometimes I add a little almond butter or flax seed or agave, depending on what I feel like. I have been paying special attention to my diet and this is really helping me to feel healthy and hopefully will help my body stay healthy.
I think often of all of my friends going through their cancer treatments and although I'm through the tough stuff for now I don't forget what it's like. I felt many times that it would never be over, that I would be feeling that horrible forever. There didn't seem to be an end in sight and the only end that I could see was a terrifying one. This is why it is so hard to believe that I have come out the other side feeling this way. My wish for anyone going through cancer is that you keep hoping and dreaming of a healthy life, that you can stay positive most of the time (I think that it is unrealistic and unhealthy to be completely positive 24/7), that you believe in yourself and in what you can accomplish and that you can surround yourself with loving, caring people who will help you to get through all the tough stuff.
I will be enjoying every minute of the next five weeks feeling very grateful for this second chance!
Believe!
Hope!
Laugh!
Natalie
Friday, January 6, 2012
A Brand New Year Full of Hope!!
I hope that everyone enjoyed the holidays doing whatever you and your family & friends do to celebrate!! It has been so absolutely beautiful here with barely any snow but lots of nice, warm days to enjoy. Christmas was great spending time with the family. The kids were up at the crack of dawn Christmas morning not able to sleep because of all the excitement; although Kaden was up because he was sick, so needless to say there wasn't much sleep going on in this house. So we were up and finished opening presents by 8 am. I think that's a record around here! Christmas basically lasted all week going out to visit lots of family. It's so great catching up with every one. We headed up to visit Jeff's family for New Year's which was really nice. We rang in the New Year and had a blast playing cards and of course watching the hockey game!! Then it was time to head home back to reality and yep...work.
So my kids were curious why mom seemed so happy to be returning to work and when Gavin asked me "Why are you so excited to be going back to work?" all I could think of to say was "because I can". Being able to return back to life for me right now is like a second chance. It couldn't come at a more perfect time in my eyes. A brand new year, a fresh start, a beginning full of hope. I look at 2012 like I have never looked at any other year before. I am very hopeful that this year will be a year without cancer, a year that will not be as stressful as the last two, a year with less worry and fear. I don't go back to Cancer Care or have any other scans until the beginning of March so for the next couple of months I can move forward and really enjoy life, finally!! Now, I know that getting excited about having 2 months away from hospitals, doctors, needles and scans may not seem like that big of a deal to most of you but to me it means two whole months to catch my breathe, build myself back up (physically, emotionally, and of course financially) and enjoy this time with my family having fun. I am going to do everything that I can to make sure that my body keeps fighting this cancer for as long as possible. I have already made some significant changes in my lifestyle (nutrition and exercise) and am feeling great because of it!
Melanoma has been making it into the news again lately with new clinical trials starting in Canada within the next couple of months. It is a new immune therapy treatment which has been showing positive results in the States. Researchers are doing alot of work in this area and it seems to be paying off. Instead of going in and trying to kill the cancer (which is difficult without killing the patient) they are looking more at boosting your immune system so that your body can go in and do it for you. Training your own system to tag and take down those nasty cells. It is very exciting for melanoma patients since for so long there has been little or no advancement in treatment options. It is nice to know that we are getting that much closer to a cure. It brings alot of hope to those of us with this disease and our families.
The kids are getting geared up to get back to school on Monday and we (well, Jeff and I anyway) are looking forward to settling into a new routine.
I hope that everyone enjoyed their holidays with their loved ones and that 2012 will be full of great health, happiness and love for you all!!
So my kids were curious why mom seemed so happy to be returning to work and when Gavin asked me "Why are you so excited to be going back to work?" all I could think of to say was "because I can". Being able to return back to life for me right now is like a second chance. It couldn't come at a more perfect time in my eyes. A brand new year, a fresh start, a beginning full of hope. I look at 2012 like I have never looked at any other year before. I am very hopeful that this year will be a year without cancer, a year that will not be as stressful as the last two, a year with less worry and fear. I don't go back to Cancer Care or have any other scans until the beginning of March so for the next couple of months I can move forward and really enjoy life, finally!! Now, I know that getting excited about having 2 months away from hospitals, doctors, needles and scans may not seem like that big of a deal to most of you but to me it means two whole months to catch my breathe, build myself back up (physically, emotionally, and of course financially) and enjoy this time with my family having fun. I am going to do everything that I can to make sure that my body keeps fighting this cancer for as long as possible. I have already made some significant changes in my lifestyle (nutrition and exercise) and am feeling great because of it!
Melanoma has been making it into the news again lately with new clinical trials starting in Canada within the next couple of months. It is a new immune therapy treatment which has been showing positive results in the States. Researchers are doing alot of work in this area and it seems to be paying off. Instead of going in and trying to kill the cancer (which is difficult without killing the patient) they are looking more at boosting your immune system so that your body can go in and do it for you. Training your own system to tag and take down those nasty cells. It is very exciting for melanoma patients since for so long there has been little or no advancement in treatment options. It is nice to know that we are getting that much closer to a cure. It brings alot of hope to those of us with this disease and our families.
The kids are getting geared up to get back to school on Monday and we (well, Jeff and I anyway) are looking forward to settling into a new routine.
I hope that everyone enjoyed their holidays with their loved ones and that 2012 will be full of great health, happiness and love for you all!!
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