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!!!
Wednesday, July 25, 2012
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
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