So I got TWO calls from the cancer centre today. I was expecting them to be a cancellation of my liver MRI, since my oncologist didn't seem to think I needed one after all... but that didn't turn out to be the case.
One was to CONFIRM my MRI, and to let me know that yes, on the 5th I need to be there in the morning.
The 2nd was to let me know that Dr. T has asked an associate of his, Dr. Mc, to take me on for consultations.
I had heard about her when I had my check up in the summer; I know she trained extensively with her and they are trying to establish the same type of program that the Calgary center has here in BC. I think its fabulous, and I'm both happy to meet her and to hopefully be part of the program being available to more BC patients. Still, a little part of me is sad that I won't be seeing Dr. T anymore... he really is that amazing.
I also thought that meant that my next follow up would be the 6 month from Dr.T's ( January), but she wants to see me in just over three weeks. Overall I'm feeling a little nervous, but hey... the more information and attention the better.
Finally got to make an appointment with my sister's naturopath for later this month too. I balked a little at the "Oh we charge $150 for new patients", but at the end of the day I just need someone that can see all the issues, bits missing and things I want to accomplish and help me design a nutrition plan.
Today is my son's 9th birthday.... and I feel so blessed to be here to celebrate it with him. :)
Friday, 1 November 2013
Wednesday, 23 October 2013
Whew!
Good news... clean MRI!! :D NED! Dr.
J doesn't think I need to have the liver MRI based on this one, so
that one might be cancelled. He will confer with the radiologist and
probably Dr. Temple.
I DO have to get back on calcium and vitamin D, and he has
ordered a bone density scan I need to have done as a baseline, as I am
at higher risk for osteoporosis. I'm actually also having done hepatitis
exams, just to be on the safe side. So, the solution is weightloss, but also revised eating habits for me. While we've come a long way and we've just started our family challenge ( thank you Ula and Val for the tips) I will probably need more strict monitoring and expert advise on how to go about doing that, because of ALL the things that got taken out of my body and all the types of food I can't process anymore ( like probiotics).
Chris' insurance covers a naturopath, so now that I have all the information ( pending the bonemass and hep tests) I will follow up and try and get an appointment with one. Onwards!
Tuesday, 17 September 2013
And six weeks later...
I had more bloodwork done and went in to see my GP again.
Medication has helped my HBP and my thyroid issues, but my liver enzymes keep going up. On her advise I contacted my oncologists, and Dr. T suggested a CT scan or an MRI to see what's up with my liver. All advised not jumping to scary conclusions, but they were also concerned.
My 6 month MRI is coming up on October 9th. That's booked, and ready, as is meeting with Dr. J two weeks after that (* he's away until the end of this month). It took some pushing and explaining, but his office has sent a request to the imaging department, as we need to see what is going on with my liver, which apparently means an MRI focusing on the liver ( no date set yet).
Wee.
I'd chalk it up to feeling nervous about my 6 month MRI if my bloodwork wasn't consistently getting higher. Of course, my paranoia takes over and keeps conjuring up the worst scenarios possible. Don't we all do that? I'm taking it day by day but some days are rougher than others.
This fall (all of 2 weeks ago) we finally chose to pull our son out of a school that wasn't meeting his needs and homeschool him. He has been thriving and we have both been loving it, but the health issues rearing up have us nervous on that regard too. We choose to go ahead and take this leap of faith because we HAVE to be able to plan to some degree, to anticipate a future and prepare accordingly. It has been immensely rewarding to see him thriving, even if this particular journey has no map of the road ahead. Isn't that true of life in general?
At least I've never been daunted by the road less traveled.
Medication has helped my HBP and my thyroid issues, but my liver enzymes keep going up. On her advise I contacted my oncologists, and Dr. T suggested a CT scan or an MRI to see what's up with my liver. All advised not jumping to scary conclusions, but they were also concerned.
My 6 month MRI is coming up on October 9th. That's booked, and ready, as is meeting with Dr. J two weeks after that (* he's away until the end of this month). It took some pushing and explaining, but his office has sent a request to the imaging department, as we need to see what is going on with my liver, which apparently means an MRI focusing on the liver ( no date set yet).
Wee.
I'd chalk it up to feeling nervous about my 6 month MRI if my bloodwork wasn't consistently getting higher. Of course, my paranoia takes over and keeps conjuring up the worst scenarios possible. Don't we all do that? I'm taking it day by day but some days are rougher than others.
This fall (all of 2 weeks ago) we finally chose to pull our son out of a school that wasn't meeting his needs and homeschool him. He has been thriving and we have both been loving it, but the health issues rearing up have us nervous on that regard too. We choose to go ahead and take this leap of faith because we HAVE to be able to plan to some degree, to anticipate a future and prepare accordingly. It has been immensely rewarding to see him thriving, even if this particular journey has no map of the road ahead. Isn't that true of life in general?
At least I've never been daunted by the road less traveled.
Sunday, 11 August 2013
The Not-So-Fun Aftereffects
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.
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.
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.
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