I promised to post if I got some good news so... here it goes! I met with my oncologist and the news are ...NED!!!
All my scans have been since surgery almost two years ago so they will
now switch to yearly MRIs ( unless Dr. T countermands that at my summer
yearly check up)
I am so excited I could jump, but I think I was a little shell-shocked when Chris took the photo.
Should have some exciting news about Bellybuttonless soon too - I'll post them up as soon as I can. :)
The Aurora Awards are coming to Vancouver this year! Excited about the possibilities!
There are lots of stories online, lots of loved ones we have lost along the way. Getting a cancer diagnosis is terrifying, and the net can be a double-edged sword. Don't forget though - there are good stories out there too, and great outcomes can happen.
Here is hoping to much brighter days ahead for
all of us, and good things on the horizon!
Thursday, 10 April 2014
Wednesday, 2 April 2014
Yet Another Respiratory Infection of course!
Minor, thankfully, as I went in to see my GP straight away.
By straight away -- I mean the day after I started feeling ill. I've had two bouts of bronchitis since January, which all developed in the span of 2-3 days. Not having a spleen means I catch more things, and apparently they run amock faster too!
Happily my GP is the same amazing doctor that stuck by us during our cancer journey, and the staff always help me get in quickly. They know at this point how fast things can go where my health is concerned. I'm currently on more antibiotics, and pushing on ahead.
I have my next appointment with Dr. J on the 10th to discuss the MRI results. I hate having to wait a couple of weeks, as I sit on pins and needles and I'm pretty sure Chris does too. I'm a little calmer this time around, as I'm -hopefully- getting good news : If my scan is still clear ( as it has been) then I will get to go onto the yearly MRI as opposed to the 6 months ones!
There may also be some exciting news about "Bellybuttonless" soon, and I will post once I can share them. I don't want to get my hopes up, but it could be an opportunity to make it more readily available to a wider audience. Really looking forward to that possibility. :)
Spring is just around the corner, and I can't wait.
By straight away -- I mean the day after I started feeling ill. I've had two bouts of bronchitis since January, which all developed in the span of 2-3 days. Not having a spleen means I catch more things, and apparently they run amock faster too!
Happily my GP is the same amazing doctor that stuck by us during our cancer journey, and the staff always help me get in quickly. They know at this point how fast things can go where my health is concerned. I'm currently on more antibiotics, and pushing on ahead.
I have my next appointment with Dr. J on the 10th to discuss the MRI results. I hate having to wait a couple of weeks, as I sit on pins and needles and I'm pretty sure Chris does too. I'm a little calmer this time around, as I'm -hopefully- getting good news : If my scan is still clear ( as it has been) then I will get to go onto the yearly MRI as opposed to the 6 months ones!
There may also be some exciting news about "Bellybuttonless" soon, and I will post once I can share them. I don't want to get my hopes up, but it could be an opportunity to make it more readily available to a wider audience. Really looking forward to that possibility. :)
Spring is just around the corner, and I can't wait.
Wednesday, 26 March 2014
MRI Coming up... and Relay for Life
The day after tomorrow I have my next MRI. If its clean ( like the others have been) then I get to go onto the yearly ones, rather than every 6 months.
And yet, I'm scared ( pardon my language) shitless. Every time, regardless how the others have turned out, there is that moment of breathless terror. The possibility that maybe this time they will find something again.
Needless to say, I can't live my life that way and for the most part I don't. I wouldn't have undertaken homeschooling our son and taking on some professional opportunities this year if I was still in survival mode. My day to day isn't about cancer anymore. Two years later, can I admit to that? However, I am still part of the support group that I found before my MOAS, and in those two years I ache to think how many friends we've lost. I am one of the lucky ones, but there's always that worry of what happens if the luck runs out?
I find that I am a lot more melancholy this year. Last year I had just finished chemo and dealt with the surgery and the aftermath; I was functioning on survival mode. Last summer, after my appointment with the wonderful Doctor Temple, we finally made the decision to pull out son from the public school system. It was a leap of faith that has paid off a thousand fold. He is happy and less anxious, thriving. So am I. And then the anniversaries started.
( Of course as I'm typing this I got a phone call from the Cancer Agency and just about jumped out of my skin. It was just to remind me of my MRI Friday)
This year we didn't celebrate Purim. I mean, I made the hamantsachen and shared them, but we didn't participate in the school's celebrations or the community one. In fact, we went away for that weekend; we spent it together trying to learn something new - snowboarding.
Two years ago I was baking for Purim, planning to go to the party that afternoon. Instead I had to call my mom to come look after Aiden as I headed with Chris to the ER. Life unraveled after that.
This spring break was hard too; our son is now spending the rest of the week with his grandparent. Its hard not to recall the spring break two years ago, when he spent it all with them on the island while we struggled to figure out how to tell him I had stage 4 cancer.
Passover was spent with all my family at the community celebration here, and I cried all the way through it. This year I've opted not to go and have only the family one, as I don't feel ready for it yet. I think that the emotional impact of what we went through is finally hitting me.
I am writing again. I am drawing again. I am living and learning, and trying new things. I am reminding myself constantly that its a process and we're well underway. Some days are easier than others, and no matter where you are in the journey I wish you luck and strength.
This year, however, I feel that I am also ready to honour the journey - the friends we lost along the way, the fight we all gave. I will be participating in our Relay for Life activities ( http://convio.cancer.ca/site/TR/RelayForLife/RFL_BC_even_?px=5740486&pg=personal&fr_id=15991 ) both closer to come and elsewhere in the Lower Mainland. I may even be bringing my book, and sharing my story with others.
I hope that if you found this blog, it has helped a little. I hope you know that for all the heartbreak there are good outcomes too.
And yet, I'm scared ( pardon my language) shitless. Every time, regardless how the others have turned out, there is that moment of breathless terror. The possibility that maybe this time they will find something again.
Needless to say, I can't live my life that way and for the most part I don't. I wouldn't have undertaken homeschooling our son and taking on some professional opportunities this year if I was still in survival mode. My day to day isn't about cancer anymore. Two years later, can I admit to that? However, I am still part of the support group that I found before my MOAS, and in those two years I ache to think how many friends we've lost. I am one of the lucky ones, but there's always that worry of what happens if the luck runs out?
I find that I am a lot more melancholy this year. Last year I had just finished chemo and dealt with the surgery and the aftermath; I was functioning on survival mode. Last summer, after my appointment with the wonderful Doctor Temple, we finally made the decision to pull out son from the public school system. It was a leap of faith that has paid off a thousand fold. He is happy and less anxious, thriving. So am I. And then the anniversaries started.
( Of course as I'm typing this I got a phone call from the Cancer Agency and just about jumped out of my skin. It was just to remind me of my MRI Friday)
This year we didn't celebrate Purim. I mean, I made the hamantsachen and shared them, but we didn't participate in the school's celebrations or the community one. In fact, we went away for that weekend; we spent it together trying to learn something new - snowboarding.
Two years ago I was baking for Purim, planning to go to the party that afternoon. Instead I had to call my mom to come look after Aiden as I headed with Chris to the ER. Life unraveled after that.
This spring break was hard too; our son is now spending the rest of the week with his grandparent. Its hard not to recall the spring break two years ago, when he spent it all with them on the island while we struggled to figure out how to tell him I had stage 4 cancer.
Passover was spent with all my family at the community celebration here, and I cried all the way through it. This year I've opted not to go and have only the family one, as I don't feel ready for it yet. I think that the emotional impact of what we went through is finally hitting me.
I am writing again. I am drawing again. I am living and learning, and trying new things. I am reminding myself constantly that its a process and we're well underway. Some days are easier than others, and no matter where you are in the journey I wish you luck and strength.
This year, however, I feel that I am also ready to honour the journey - the friends we lost along the way, the fight we all gave. I will be participating in our Relay for Life activities ( http://convio.cancer.ca/site/TR/RelayForLife/RFL_BC_even_?px=5740486&pg=personal&fr_id=15991 ) both closer to come and elsewhere in the Lower Mainland. I may even be bringing my book, and sharing my story with others.
I hope that if you found this blog, it has helped a little. I hope you know that for all the heartbreak there are good outcomes too.
Saturday, 25 January 2014
Glorious Antibiotics - and Ode to the Spleen
This is cold and flu season. As one of the things taken out during my surgery was my spleen, every year my family and I get the flu shots. I had a round of different vaccines before my surgery, but unfortunately the lack of spleen will always make me susceptible to infections, and increases the likelihood that they can become serious. As you can imagine, I also try to stay away from particularly nasty plagues that are going around.
Unfortunately a couple of weeks ago my son came back from a sleepover not feeling well. I didn't think much of it until two days later, when I started feeling like crud. For me, things happen quickly. By the third day I was starting to cough a bit, I felt congested and had overall malaise. Normally these are the kind of things that most people will ignore, thinking they are just getting a cold.
If you don't have a spleen however, you NEED to pay attention to your body and get checked out. So, feeling slightly sheepish I went off to see my GP. She listened to my lungs -- and there was the beggining of bronchitis. I came home with a nose spray, an asthma inhaler ( !) and a prescription for antibiotics. Her advice was to give the inhaler and nose spray 72 hours, and if I wasn't feeling better I should take the antibiotics, as I couldn't really take chances.
I got all three together and began using the first two. A day later I had a full blown cough and was wheezing like crazy. Although the inhaler helped a bit, I kept feeling worse and worse... so on the third day I started on the antibiotics.
If there was ever a RAMBO equivalent in antibiotics, I have to say these are probably it. By the 2nd day of taking them I was feeling GREAT. I still had to finish the 10 day dose, which meant I couldn't drive- you have to always check interaction with other medications- but by the time I saw my GP the following week I was doing just fine. If I hadn't taken them and the other medication when I did, I could've likely ended up with pneumonia.
Not everything needs antibiotics. Not everything needs a visit to your doctor. But -if you have a compromised immune system, listen to your body.
Unfortunately a couple of weeks ago my son came back from a sleepover not feeling well. I didn't think much of it until two days later, when I started feeling like crud. For me, things happen quickly. By the third day I was starting to cough a bit, I felt congested and had overall malaise. Normally these are the kind of things that most people will ignore, thinking they are just getting a cold.
If you don't have a spleen however, you NEED to pay attention to your body and get checked out. So, feeling slightly sheepish I went off to see my GP. She listened to my lungs -- and there was the beggining of bronchitis. I came home with a nose spray, an asthma inhaler ( !) and a prescription for antibiotics. Her advice was to give the inhaler and nose spray 72 hours, and if I wasn't feeling better I should take the antibiotics, as I couldn't really take chances.
I got all three together and began using the first two. A day later I had a full blown cough and was wheezing like crazy. Although the inhaler helped a bit, I kept feeling worse and worse... so on the third day I started on the antibiotics.
If there was ever a RAMBO equivalent in antibiotics, I have to say these are probably it. By the 2nd day of taking them I was feeling GREAT. I still had to finish the 10 day dose, which meant I couldn't drive- you have to always check interaction with other medications- but by the time I saw my GP the following week I was doing just fine. If I hadn't taken them and the other medication when I did, I could've likely ended up with pneumonia.
Not everything needs antibiotics. Not everything needs a visit to your doctor. But -if you have a compromised immune system, listen to your body.
Tuesday, 7 January 2014
And Love Remains the Same
Happy New Year!
When we first found out I had PMP back in March 2012, searching for blogs was a disheartening, heart-breaking experience. My husband made me promise that even after treatment finished I would continue to update the blog at least once a month - so people would know if I was doing well, or any other issues that came up.
Where an Apis bellyaches
I'm feeling under the weather. I'm writing about feeling under the weather because I hadn't really felt sick since the end of chemotherapy in late 2012. It strikes me now that all the different plagues I caught in the year leading up to my cancer diagnosis were probably due to my body fighting the cancer as it spread. No wonder it was spread thin.
This current crud is probably only a flu. I get the flu shot every year, but since I no longer have a spleen since the MOAS my body seems to have remained immuno-compromised. Feeling inordinately crappy I went in to see my GP -- who put me on an asthma like inhaler, a nose spray and antibiotics I should start in 48 hours if the first two haven't cleared things up, as apparently there's inflammation in my lungs. Wee. I also have to go back in a week to get checked AND also discuss the results of my latest bloodwork as apparently the liver enzymes continue to prop up.
TMI, and a lot of whining - I know. I am happy that I can whine about it. I have learned the hard way that ignoring your body, discounting symptoms and simply gritting your teeth and carrying on is not necessarily the best course of action. You are the best judge of when your body feels off; you know when something is up, and should listen to that gut feeling.
Two years ago ( two years ago!) I was feeling really sick. I was coming off a nasty bronchitis, and absolutely drained... most of the day ( while my son was in school) I was sleeping as my body marshaled what strength it had to fight. I didn't know it yet. By Valentine's I would know that something was definitely WRONG -- and by early March the enemy had a name, cancer. Pseudomyxoma Peritonei... what a mouthful. By April I had been referred to a specialist, the wonderful Dr. Temple in Calgary. By mid June I had undergone the cytoreductive surgery, by November finished the additional chemotherapy ( I stopped after 4 cycles of the suggested 12).
Suddenly its January 2014 and HERE I AM. I didn't think I was going to make it to my 37th birthday, and I've just turned 39. I'd do it all over again if I had to, but I really, really hope that I never do. There are organs that I missed more than others ( we had always hoped to give our son a sibling, and now we know why we were unable to), I count my blessing each and every day.
2013 was a rough year, as several fellow pmp friends passed away. 2014 starts with similar heartbreak.
The last couple have been particularly rough - young fathers, amazing people. When I was diagnosed, I thought that I was too young to get this type of cancer... and then met and interacted with people much younger than me. They will be missed. How can then not be? When they were kind, and funny, strong and brave. They leaves children behind that are much too young. I hope that those they live behind know how they were loved. That love is not destroyed but transformed, and may the memories of that love wrap around them always.
I am really hopeful that Dr. McConnell being in Vancouver means that some of the families with younger kids will have a fighting chance... a way where they won't have to travel out of Province and be far away from that support and energy that your loved ones provide.
I hope there is a day where no child loses a parent like this.
When we first found out I had PMP back in March 2012, searching for blogs was a disheartening, heart-breaking experience. My husband made me promise that even after treatment finished I would continue to update the blog at least once a month - so people would know if I was doing well, or any other issues that came up.
Where an Apis bellyaches
I'm feeling under the weather. I'm writing about feeling under the weather because I hadn't really felt sick since the end of chemotherapy in late 2012. It strikes me now that all the different plagues I caught in the year leading up to my cancer diagnosis were probably due to my body fighting the cancer as it spread. No wonder it was spread thin.
This current crud is probably only a flu. I get the flu shot every year, but since I no longer have a spleen since the MOAS my body seems to have remained immuno-compromised. Feeling inordinately crappy I went in to see my GP -- who put me on an asthma like inhaler, a nose spray and antibiotics I should start in 48 hours if the first two haven't cleared things up, as apparently there's inflammation in my lungs. Wee. I also have to go back in a week to get checked AND also discuss the results of my latest bloodwork as apparently the liver enzymes continue to prop up.
TMI, and a lot of whining - I know. I am happy that I can whine about it. I have learned the hard way that ignoring your body, discounting symptoms and simply gritting your teeth and carrying on is not necessarily the best course of action. You are the best judge of when your body feels off; you know when something is up, and should listen to that gut feeling.
Two years ago ( two years ago!) I was feeling really sick. I was coming off a nasty bronchitis, and absolutely drained... most of the day ( while my son was in school) I was sleeping as my body marshaled what strength it had to fight. I didn't know it yet. By Valentine's I would know that something was definitely WRONG -- and by early March the enemy had a name, cancer. Pseudomyxoma Peritonei... what a mouthful. By April I had been referred to a specialist, the wonderful Dr. Temple in Calgary. By mid June I had undergone the cytoreductive surgery, by November finished the additional chemotherapy ( I stopped after 4 cycles of the suggested 12).
Suddenly its January 2014 and HERE I AM. I didn't think I was going to make it to my 37th birthday, and I've just turned 39. I'd do it all over again if I had to, but I really, really hope that I never do. There are organs that I missed more than others ( we had always hoped to give our son a sibling, and now we know why we were unable to), I count my blessing each and every day.
2013 was a rough year, as several fellow pmp friends passed away. 2014 starts with similar heartbreak.
The last couple have been particularly rough - young fathers, amazing people. When I was diagnosed, I thought that I was too young to get this type of cancer... and then met and interacted with people much younger than me. They will be missed. How can then not be? When they were kind, and funny, strong and brave. They leaves children behind that are much too young. I hope that those they live behind know how they were loved. That love is not destroyed but transformed, and may the memories of that love wrap around them always.
I am really hopeful that Dr. McConnell being in Vancouver means that some of the families with younger kids will have a fighting chance... a way where they won't have to travel out of Province and be far away from that support and energy that your loved ones provide.
I hope there is a day where no child loses a parent like this.
Tuesday, 17 December 2013
Why are we afraid of the dark?
When I was a child, I wasn’t afraid of the dark. In fact, now and then I’d hide in a closet and
find a nook that was dark and quiet, trying to find a little bit of peace and
quiet for myself. This is not to say
that I didn’t believe that things lurked out in the darkness, that the world
around us wasn’t populated by a thousand invisible enemies who were waiting for
us. I did. I simply wasn’t afraid of them.
My earliest dreams could be called nightmares, except that
they weren’t frightening per se. There was the one where the skeletons danced
and played instruments around my bed and made it levitate only to fly out onto
the street ( after going right through the wall); there was the one where my
sister and I were in the middle of a volcano with our grandma, trying to find
our way back up the top; there was the one where I was running for miles down a
spiral staircase with someone, while something chased us (we were separated
after he flung me out the window to escape).
Still, in each and every single
one of this dreams the emotion that dominated me wasn’t fear, but rather an all
consuming need to take what control I had of the situation and escape. The survival instinct was all that I could
focus on, so there was no time for the fear.
Friends and family remarked a few times how taken aback they
were by the way I handled my cancer battle. And yet, I don’t know that I found my reaction out of the ordinary.
It was, it is, a battle. I have been training for battle since I have memory of
self- awareness; most of these dreams took place before I was six, although
some ( the tower one in particular) continued well into my teens.
My grandma Anita use to sing us stories. I say stories
because they weren’t simply songs, but rather a continuation of the story that
connected us to her, to the generations past.
Most were tragic, many strangely haunting. One was about El Coco ( El
Cucuy) which I didn’t come across until recently (http://en.wikipedia.org/wiki/ Coco_%28folklore%29):
Duérmete
mi niño, duérmete ya...
Si
no viene el Coco y te comerá.
Y
si no te come, Te llevara…
Y
si no te lleva, quien sabe que hara…
(“Go to sleep, child/
go to sleep now/ for if you don’t the Coco will come and eat you/ and if it
doesn’t eat you, it will take you away/ and if it doesn’t take you, who knows
what it’ll do…”)
Until yesterday I was fully convinced that she had made it
up.
I wouldn’t put it past her; with her dark humour and wit, it
was just the thing she’d do. However, it appears that the song is far older
than her… ancestral even. It’s a warning about one of the many things that live
out in the dark, the many things that can attack us if we stray from the path.
I’m reminded of Little Red Riding Hood and the warnings to not stray from that
path… what lay in the wilderness around it? What could we do if we did stray
and things spun out of our control, in that savage land outside the prescribed,
safe routes?
Like I said - I wasn’t afraid of the dark, and I
wasn't afraid of straying from the prescribed road to make my own path.
It wasn’t that I
didn’t believe in monsters - oh, I did!- but I believed in my own
capacity to
outwit them and survive. I believed that no matter what these spawns of a
chaotic universe attacked me with I
would find a way to still make it out alive.
So my life, much like my cancer battle, hasn’t been guided by fear but
by faith… largely in me and my ability to find
a way out when things spin out of control.
When my son was born, fear snuck in. Not about me, but at my ability to protect him.
I had honed my skills over the years to know that I woulsd find a way to always be okay… but it
wasn’t about me anymore. So I told him
there were no monsters, and put night lights in his room. I told him that
the shadows were the hangers in the
closet, the baubles in his room. I told him there was nothing beyond this world
he saw, so there was nothing to fear. I
told myself that if he couldn’t picture the monsters in the darkness then
perhaps they couldn’t see HIM.
Then the cancer came. Then came the day my son asked me about G-d. How did I know, how
could I know? If there is nothing in the darkness, how could there be something
in the light? I realized that in hiding the monsters I had hidden the fae, the
spirits, our G-d. Because at the end its all about faith, that faith that walks
you through the valleys of fear, that lifts you into safely and healing.
Tuesday, 10 December 2013
She Was Named After a Star
We met in the support group, brief moments only. It was odd and soothing, how strangers shared an hour and found so much in common, while our children played.
Tanabata, I remember thinking. The herder and the weaver stars... the lovers separated that only get to meet once a year, on July 7th. Her brain tumour had come back, and she knew. She knew, and we all shared silences while elsewhere in the building our children played.
How do you come to Winter, and not think of them? When every leaf whirls in the wind, catches the light.. .and you remember? And snow falls, strange ocurrence in Vancouver, and the silence only leaves you time to think and to imagine? To say a prayer and a silent thought, a moment's touch of remembrance.
I remember. I remember the names of each and every friend I've met that shares the journey. This year has been hard, and I imagine others will be too. There have been many that have fallen, because... well, many do. Many do, and that is why we fight, and claw, and scream, and keep pushing for research and for surgery, and for options because we have as much right as anyone to live, to fight for the possibility of life.
She was named after a star, and never forgot how to live. The best, the only thing that we can leave those we love is that footprint of love, that warmth that wraps around like a shawl against the winter chill.
We remember you. We remember.
Tanabata, I remember thinking. The herder and the weaver stars... the lovers separated that only get to meet once a year, on July 7th. Her brain tumour had come back, and she knew. She knew, and we all shared silences while elsewhere in the building our children played.
How do you come to Winter, and not think of them? When every leaf whirls in the wind, catches the light.. .and you remember? And snow falls, strange ocurrence in Vancouver, and the silence only leaves you time to think and to imagine? To say a prayer and a silent thought, a moment's touch of remembrance.
I remember. I remember the names of each and every friend I've met that shares the journey. This year has been hard, and I imagine others will be too. There have been many that have fallen, because... well, many do. Many do, and that is why we fight, and claw, and scream, and keep pushing for research and for surgery, and for options because we have as much right as anyone to live, to fight for the possibility of life.
She was named after a star, and never forgot how to live. The best, the only thing that we can leave those we love is that footprint of love, that warmth that wraps around like a shawl against the winter chill.
We remember you. We remember.
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