A week after we got back from Alberta I went to see my GP, as I'd been having random vertigo for a few days. I also wanted to discuss getting on HRT as Dr. T had suggested, so I thought it was better to go to my doctor than to a random clinic.
Honestly, I thought that I was getting an ear infection, having had a really bad one ( with severe and constant vertigo) about fifteen years ago. That said, I thought we'd be in and out in a half hour.
I really should've known better, as life seems to like curveballs.
In the end I didn't get HRT. When I described the vertigo and she checked me over there was nothing wrong with my ears, but my blood pressure was a whooping 162/120 ( or thereabouts). I left her office with blood pressure medication ( !) and a slew of lab tests I had to get done.
The next morning ( still a little shell-shocked), I went to get them all done. There were flags all over the place. She called me in on Tuesday to discuss the results; my thyroid had jumped 8 times from a test we had done in April, and there were concerns about my kidney and liver functions.
I was pissed. I'll be honest. I was furious after we left that office, because I left with a prescription for thyroid medication and the possibility that there might be issues with my liver or kidneys in the relatively near future. What's the cause? Probably chemotherapy. It isn't rare for the cocktail that I was in to cause any of these issues, and its just my luck that it might cause all of them. I mean, I seem to have gotten just about all other weird side effects.
After the crankiness subsided, I took a deep breath. I know that the surgery and chemo saved my life. Sure, chemotherapy may be the equivalent of leeches to people a hundred years from now, but its the best weapon we have. And I went in, guns blazing, to throw everything but the sink at it.
So, for now I'm in a couple of medications, and in five weeks we will get all the tests redone and see how things are evolving. I am hoping that the medication gets to the root of the problem, and hopefully it gives my body time to recover more from the chemo.
Today is my boy's first day at his first sleepaway camp. I will focus on that instead.
Sunday, 11 August 2013
Monday, 22 July 2013
The Anniversary Check up And the Strange Workings of the Universe
We just returned from a week-long drive to Alberta for my 1 year check up with Dr. T.
Anniversaries are scary; every doubt seems to creep up and keep you from sleeping well. I have had amazing care throughout this journey, but my doubts and worries are always put to rest by Dr. T. He is the expert who opened me up and took the cancer away, or as my son so eloquently puts it 'kicked the jelly's butt.'
I wanted to go and see him so that I could take a breath and move on. I don't think that you ever entirely move on from cancer, but for the past year and a half I have been living in the moment and in fear. In hope, partly, but mostly in fear. I hate being afraid; in middle school I took up drama to force me to confront my fear of crowds and public speaking, and since I have tried to face my terrors the same way.
I wasn't prepared for cancer. Not for the practicalities of treatment, for the friends made ( and lost) along the way, not for the sheer pummeling that body and spirit can take. Mostly, however, I wasn't prepared to lose my ability to project myself into the future and plan what may lay ahead.
Dr. T was amazing. We discussed the MRI ( NED, stellar) he did an exam; he encouraged me to go back onto HRT as that will help me rediscover more normalcy in my life as well. He was delighted to hear that I am back to my old self, even playing soccer with my son; he was sad that I didn't bring him to meet him, but I promised that one day I will. He asked me if I had written any more books, and thanked me for the copy that I sent him. This wonderful expert, this amazing human being... how can I describe the love that my family feels for him? It isn't just gratitude, or admiration, but genuine affection. This was the person who saved my life, and managed to save our family. I asked a question for a friend whose family member is undergoing this journey and he was quick to point me ( and her ) in the right direction. How are we so blessed, to have found him in our path? I finally got to meet in person his wonderful assistant D. - what a team! People who genuinely care and try to help feel so rare, this day and age. I hope they continue to inspire everyone that works with them for many, many years to come.
Another joy was in seeing my sisters and parents, all reunited in Calgary to make some better memories this year. Aiden got to play with his cousins, and while poor Chris slept away the week thanks to a miserable bout with bronchitis we all made wonderful new summer memories of that beautiful place.
My sister Ula and her husband MOVED cities so they could be close to the hospital and support me and my guys. They didn't ask, they did it... they went above and beyond, and showed us the sort of love that I am still in awe of.
My youngest sister, Val, had an internship in NYC that she passed up ( despite my protests) to be at my side and help me through the aftermath of surgery. She told me that whatever her future held would still be there, but that she needed to be there that summer to help me through the rougher times. And she did. This past Spring she got a different internship in NYC and today released the first single "M&Ms" of her EP Saudade: http://www.thisisfakediy.co.uk/articles/news/listen-tei-shi-streams-debut-single-mms/
I have to believe that life is coming full circle, and letting us all rebuild. I can see the future now. I can plan, and picture my son graduating highschool, university, getting married. I can see my sisters in their careers and partnerships, happy and fulfilled. Like the fortune cookie I received as a teenager, my future now feels as boundless as the lofty heavens.
The MRIs will continue, every 6 months. I don't know that those quite end. But perhaps between those half year intervals I will disconnect a little and just build new memories every chance I get. I always get the questions and the comments, so if you ever need to reach out, I am happy to answer.
So here's to tomorrow, and all the tomorrows yet to come.
Anniversaries are scary; every doubt seems to creep up and keep you from sleeping well. I have had amazing care throughout this journey, but my doubts and worries are always put to rest by Dr. T. He is the expert who opened me up and took the cancer away, or as my son so eloquently puts it 'kicked the jelly's butt.'
I wanted to go and see him so that I could take a breath and move on. I don't think that you ever entirely move on from cancer, but for the past year and a half I have been living in the moment and in fear. In hope, partly, but mostly in fear. I hate being afraid; in middle school I took up drama to force me to confront my fear of crowds and public speaking, and since I have tried to face my terrors the same way.
I wasn't prepared for cancer. Not for the practicalities of treatment, for the friends made ( and lost) along the way, not for the sheer pummeling that body and spirit can take. Mostly, however, I wasn't prepared to lose my ability to project myself into the future and plan what may lay ahead.
Dr. T was amazing. We discussed the MRI ( NED, stellar) he did an exam; he encouraged me to go back onto HRT as that will help me rediscover more normalcy in my life as well. He was delighted to hear that I am back to my old self, even playing soccer with my son; he was sad that I didn't bring him to meet him, but I promised that one day I will. He asked me if I had written any more books, and thanked me for the copy that I sent him. This wonderful expert, this amazing human being... how can I describe the love that my family feels for him? It isn't just gratitude, or admiration, but genuine affection. This was the person who saved my life, and managed to save our family. I asked a question for a friend whose family member is undergoing this journey and he was quick to point me ( and her ) in the right direction. How are we so blessed, to have found him in our path? I finally got to meet in person his wonderful assistant D. - what a team! People who genuinely care and try to help feel so rare, this day and age. I hope they continue to inspire everyone that works with them for many, many years to come.
Another joy was in seeing my sisters and parents, all reunited in Calgary to make some better memories this year. Aiden got to play with his cousins, and while poor Chris slept away the week thanks to a miserable bout with bronchitis we all made wonderful new summer memories of that beautiful place.
My sister Ula and her husband MOVED cities so they could be close to the hospital and support me and my guys. They didn't ask, they did it... they went above and beyond, and showed us the sort of love that I am still in awe of.
My youngest sister, Val, had an internship in NYC that she passed up ( despite my protests) to be at my side and help me through the aftermath of surgery. She told me that whatever her future held would still be there, but that she needed to be there that summer to help me through the rougher times. And she did. This past Spring she got a different internship in NYC and today released the first single "M&Ms" of her EP Saudade: http://www.thisisfakediy.co.uk/articles/news/listen-tei-shi-streams-debut-single-mms/
I have to believe that life is coming full circle, and letting us all rebuild. I can see the future now. I can plan, and picture my son graduating highschool, university, getting married. I can see my sisters in their careers and partnerships, happy and fulfilled. Like the fortune cookie I received as a teenager, my future now feels as boundless as the lofty heavens.
The MRIs will continue, every 6 months. I don't know that those quite end. But perhaps between those half year intervals I will disconnect a little and just build new memories every chance I get. I always get the questions and the comments, so if you ever need to reach out, I am happy to answer.
So here's to tomorrow, and all the tomorrows yet to come.
Monday, 10 June 2013
MOAS Anniversary
June 7th was the anniversary of my MOAS, the cytoreductive surgery.
I was dreading it and planning to be a hermit, but fate had other plans for me. First my son volunteers me as a parent helper at their heritage walk and art workshop that day (so how could I say no?) and then the day before our upstairs neighbors floods our apartment!
Suffice it to say it wasn't the most relaxing all days all around. It did, however, remind me again to put things in perspective and not sweat the smaller things as much. Aiden and the kids in his class had a fabulous time despite the pouring rain, we are not at fault so the strata and the guy upstairs will have to pay for the damage.
Most importantly? I'm around to deal with life's stresses alongside my guys and realize how lucky we are. <3
I was dreading it and planning to be a hermit, but fate had other plans for me. First my son volunteers me as a parent helper at their heritage walk and art workshop that day (so how could I say no?) and then the day before our upstairs neighbors floods our apartment!
Suffice it to say it wasn't the most relaxing all days all around. It did, however, remind me again to put things in perspective and not sweat the smaller things as much. Aiden and the kids in his class had a fabulous time despite the pouring rain, we are not at fault so the strata and the guy upstairs will have to pay for the damage.
Most importantly? I'm around to deal with life's stresses alongside my guys and realize how lucky we are. <3
Friday, 31 May 2013
Survivor's Guilt
In early May I phoned my grandma to let her know the good news about my MRI, and the fact that it was NED. Grandma Anita was happy to hear it from me, but she wasn't surprised -- she said she knew, as she had known all along that I would be alright.
A few days later she passed away, at the age of 93.
I had to fly overseas for her funeral, to be there for her, for my sisters, for my mother. For me. I had to find my way back to my beginning so I could say goodbye. I wondered about her words, about that last conversation; my grandma was a believer, her faith strong. She never really pushed me to believe in one thing in specific, as long as I believed in something. Faith, she often reminded us, saw us through the worst moments in our lives. I'm pretty sure she stuck around until she felt that I would be okay.
Truth is I hadn't traveled much since my MOAS. I was afraid to. What would happen if I ended up with a bathroom emergency? Or if I had an obstruction or some sort of other issue? The what ifs that never held me back before suddenly had me frozen in place. And then Granny Anita passed away, and I didn't even think twice - I was on a plane to see her off, I was coming back to her.
My grandma practically raised us when we were little. She taught me to LIVE - not just to function but to live, to seek out the things that made me happy and pursue my dreams wherever they may take me. She encouraged me to fly, even if it took me further away from her and her own life. Her legacy for me was that fearlessness and that faith, and I hope to instill those in my son. It took her passing for me to remember that side of me, and honour those lessons.
The funeral and the memorial were hard. A thousand people to hug, and words to give and take in. A million exchanges, touches, wishes. At the memorial, as we sat and talked about the wonder that was her life my mother noted that she couldn't be there for her mom on the last day, because for all last year she had been looking after her own daughter's life, and the chance she might leave her own grandson without a mom.
I felt thrown under the bus, as everyone's eyes turned to me. Some knew about my battle with PMP, other's didn't. But suddenly there was the weight of their curiosity and a wave of guilt I hadn't felt before. I lived, and she did not. That same week one of my friends from the PMP support group also passed away and while the guilt felt different it had the same familiar ache - why am I here, when others have passed on? Should I feel guilty that I have stuck around, when PMP and other things have claimed other daughters, other mothers, other friends?
No. No, I shouldn't. I know that. I know that my survival isn't at their expense. And yet there is always that ache, in being one left standing. When people say someone lost their battle with cancer I can't help but to think about the people I have known throughout this journey - no, they didn't lose. They went down kicking and biting, and left a legacy with their courage, their dignity, the sum of their lives' work.
Cancer changes you and your family. Sometimes it makes you stronger, sometimes things fall apart. Whichever way life pulls, it is never the same. I can look ahead a bit now... I make plans for the next six months, until the next MRI and whatever it holds. But I am not the person that I was before this, and I will never be that person again. That's okay. Whomever I become now, however my family changes and adapts to this new 'us', we'll find a way to make it through.
I am still grieving for the siblings I won't give Aiden, for the expectations of a future life that may not come to pass, for the friends I've lost along the way... but I'm done feeling guilty. I love this life. I love my life, I love my boys, I love my sisters, and my parents, and my friends. I love my art, I love plants, I love food, and music, and dance. I love living it with no regrets. There are things though, that clearly I am not done processing yet. I am not sure how long it will take to do so, and I am not sure that I can do it on my own. Perhaps its time to look into counseling, so that I can best figure out where to go from here.
One day at a time- my grandma taught me that.
A few days later she passed away, at the age of 93.
I had to fly overseas for her funeral, to be there for her, for my sisters, for my mother. For me. I had to find my way back to my beginning so I could say goodbye. I wondered about her words, about that last conversation; my grandma was a believer, her faith strong. She never really pushed me to believe in one thing in specific, as long as I believed in something. Faith, she often reminded us, saw us through the worst moments in our lives. I'm pretty sure she stuck around until she felt that I would be okay.
Truth is I hadn't traveled much since my MOAS. I was afraid to. What would happen if I ended up with a bathroom emergency? Or if I had an obstruction or some sort of other issue? The what ifs that never held me back before suddenly had me frozen in place. And then Granny Anita passed away, and I didn't even think twice - I was on a plane to see her off, I was coming back to her.
My grandma practically raised us when we were little. She taught me to LIVE - not just to function but to live, to seek out the things that made me happy and pursue my dreams wherever they may take me. She encouraged me to fly, even if it took me further away from her and her own life. Her legacy for me was that fearlessness and that faith, and I hope to instill those in my son. It took her passing for me to remember that side of me, and honour those lessons.
The funeral and the memorial were hard. A thousand people to hug, and words to give and take in. A million exchanges, touches, wishes. At the memorial, as we sat and talked about the wonder that was her life my mother noted that she couldn't be there for her mom on the last day, because for all last year she had been looking after her own daughter's life, and the chance she might leave her own grandson without a mom.
I felt thrown under the bus, as everyone's eyes turned to me. Some knew about my battle with PMP, other's didn't. But suddenly there was the weight of their curiosity and a wave of guilt I hadn't felt before. I lived, and she did not. That same week one of my friends from the PMP support group also passed away and while the guilt felt different it had the same familiar ache - why am I here, when others have passed on? Should I feel guilty that I have stuck around, when PMP and other things have claimed other daughters, other mothers, other friends?
No. No, I shouldn't. I know that. I know that my survival isn't at their expense. And yet there is always that ache, in being one left standing. When people say someone lost their battle with cancer I can't help but to think about the people I have known throughout this journey - no, they didn't lose. They went down kicking and biting, and left a legacy with their courage, their dignity, the sum of their lives' work.
Cancer changes you and your family. Sometimes it makes you stronger, sometimes things fall apart. Whichever way life pulls, it is never the same. I can look ahead a bit now... I make plans for the next six months, until the next MRI and whatever it holds. But I am not the person that I was before this, and I will never be that person again. That's okay. Whomever I become now, however my family changes and adapts to this new 'us', we'll find a way to make it through.
I am still grieving for the siblings I won't give Aiden, for the expectations of a future life that may not come to pass, for the friends I've lost along the way... but I'm done feeling guilty. I love this life. I love my life, I love my boys, I love my sisters, and my parents, and my friends. I love my art, I love plants, I love food, and music, and dance. I love living it with no regrets. There are things though, that clearly I am not done processing yet. I am not sure how long it will take to do so, and I am not sure that I can do it on my own. Perhaps its time to look into counseling, so that I can best figure out where to go from here.
One day at a time- my grandma taught me that.
Thursday, 25 April 2013
Thankful
Just got back from scan results, and it was NED - no evidence of
disease! So thankful and happy!
No more scans for another 6 months. Apparently the pain I was experiencing are the adhesions from surgery, still settling and stretching now that I have gained back weight.
Off to enjoy this gorgeous spring afternoon and count my blessings.
No more scans for another 6 months. Apparently the pain I was experiencing are the adhesions from surgery, still settling and stretching now that I have gained back weight.
Off to enjoy this gorgeous spring afternoon and count my blessings.
Thursday, 18 April 2013
The King of Impossible Things
Today is my MRI, the one that was moved from late May to mid April because of the zombie gnawing in my belly. I won't get the results for another week, which will be a long and stressful time. Needless to say, I'm nervous. Scanxiety -- when does it go away??
Truth is, I don't know that it does. I think we're all shell-shocked still, and trying to not think that every pain and swelling, the persistent fatigue... all add up to the jelly beast being back. I am hopeful that its just scar tissue settling and the return of glorious belly fat. I can't stay in a place of fear, and while most of the time I am getting better at getting on with my life the times surrounding scans bring it all back.
There are times we struggle; our eight year old is having struggles at school with his teacher, and more often than not tries to think of ways to stay home with me. I'd like to think its all about their clash in personalities, but to be fair I think there's probably a fair ingredient of him just wanting to be home enjoying doing things with me. Let's face it, I pretty much slept for a year. We couldn't do much together, and it took a while for us to get back to our usual activities, to discovering the world together. I don't want to give it up anymore than he does!
That said, we have to live our lives with the belief that there will be MANY days and many years ahead for us to share together. And that is where faith comes in.
I believe in G-d. For me and my family that has been a tremendous help - to think there is some order to the chaos, and some purpose to the universe. But faith isn't only religion; I have faith in science, I have faith in my family and doctors, in my friends and community. The power or universal goodness that is so often overlooked. There is so much anger and despair in the world, and sometimes I want to be the ostrich with my head in the sand. But for all the hate and the monsters out there, there are also good people. There is the good in all of us. I choose to believe in all of that.
I joked with friends around the time of my MOAS that I knew I was in good hands, since I was going to the Tom Baker Centre and Tom Baker was one of my favorite Dr. Who. I love Dr. Who, and all its incarnations. I love that the companions always have faith in him, even if he lets them down, even if he can't always save them. The purpose of it all is larger than their individual stories, and in all his different lives there is a constant of conquering impossible odds and never giving up.
This year is Dr. Who's 50th anniversary, so I made a piece of art for it. Here's to faith, and to impossible things.
Truth is, I don't know that it does. I think we're all shell-shocked still, and trying to not think that every pain and swelling, the persistent fatigue... all add up to the jelly beast being back. I am hopeful that its just scar tissue settling and the return of glorious belly fat. I can't stay in a place of fear, and while most of the time I am getting better at getting on with my life the times surrounding scans bring it all back.
There are times we struggle; our eight year old is having struggles at school with his teacher, and more often than not tries to think of ways to stay home with me. I'd like to think its all about their clash in personalities, but to be fair I think there's probably a fair ingredient of him just wanting to be home enjoying doing things with me. Let's face it, I pretty much slept for a year. We couldn't do much together, and it took a while for us to get back to our usual activities, to discovering the world together. I don't want to give it up anymore than he does!
That said, we have to live our lives with the belief that there will be MANY days and many years ahead for us to share together. And that is where faith comes in.
I believe in G-d. For me and my family that has been a tremendous help - to think there is some order to the chaos, and some purpose to the universe. But faith isn't only religion; I have faith in science, I have faith in my family and doctors, in my friends and community. The power or universal goodness that is so often overlooked. There is so much anger and despair in the world, and sometimes I want to be the ostrich with my head in the sand. But for all the hate and the monsters out there, there are also good people. There is the good in all of us. I choose to believe in all of that.
I joked with friends around the time of my MOAS that I knew I was in good hands, since I was going to the Tom Baker Centre and Tom Baker was one of my favorite Dr. Who. I love Dr. Who, and all its incarnations. I love that the companions always have faith in him, even if he lets them down, even if he can't always save them. The purpose of it all is larger than their individual stories, and in all his different lives there is a constant of conquering impossible odds and never giving up.
This year is Dr. Who's 50th anniversary, so I made a piece of art for it. Here's to faith, and to impossible things.
Thursday, 4 April 2013
Anniversary Check-up booked
So I just had a phonecall from the Alberta Tom Baker center, and my MOAS anniversary check up with Dr. Temple is booked for July 16th. It'll be neat to see Calgary again in the summer, and actually get to enjoy it this time. :)
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