Well hi...
I guess I'll start by saying sorry it's been so long. To be honest, this has gotten harder and harder to do.
When I started writing, it all seemed so much. It was all so big that it just needed to get out. So while I was receiving thanks for being so honest about my experience I was also feeling thankful for having an outlet for all this garbage.
So if this is about honesty, then it's honesty's fault that I haven't logged on in a while. I'm having a very hard time really letting people know how hard this has been. How hard this continues to be. Everyone is so ridiculously worried about me. I feel so much pressure to be ok. But I don't feel ok. I'm so ridiculously sad all the time. My beautiful daughter is simultaneously the best and worst part of every day. Sorry for the cliche, but I'm on this crazy roller coaster over feeling so much joy and love for her one minute and then at a moment's notice I'm more heartbroken than I've ever been at the thought of her calling out for me and me not being there. My counsellor at the BCCA said to me "You're so in love with her aren't you?" And I am. I really am. She is my favourite human being and I just can't handle the fact that my time is getting cut short with her. She deserves to have her mother here. She's done nothing wrong. I deserve to be tormented by a teenage daughter. Just ask my mum. She'll tell you. I have it coming to me. So why the hell is this happening??
Just getting that off my chest feels better. I don't want everyone to think I spend all my moments in total despair, because I don't. But I will admit that I struggle not to. It seems far easier to me to accept the time line I was given by my oncologist than it does to have blind faith that these supplements and infusions are going to cure incurable cancer. I re-read some of my earlier blog entries tonight. Remember my first one? About my writing being cringe worthy? Right now I'm cringing over the frustration I felt about my doctor not discussing my prognosis with me. Me and all my zero experience with this subject matter knew I could handle it. WRONG. Turns out Dr. C knew me better than I know myself. "We're going to wait and see Ashlyn" he said. And I hated him for it. The next time I see him I plan on wrapping my arms around him in a super inappropriate hug and thanking him for the favour he did me last year. For giving me that extra time in blissful ignorance. Where hope didn't seem far fetched. When worrying IF I was going to die was still a luxury.
So where's all this doom and gloom coming from? Well, they cancelled my chemo for tomorrow. My kidney's aren't functioning properly so no chemo for me. That was on top of the news that my hemoglobin dropped again and I need another blood transfusion. Curve balls. I've officially entered the part of this process where we have to troubleshoot. What I'd give for some side effects along the muted taste buds line. Trouble with organs?? No thanks. Welcome to really feeling like a cancer patient. What a kick in the head today was. Here I was thinking that I was getting ready to start chemo session #9 (that's round 5.1). I only had 8 rounds of chemo the first time around. I was thinking, "Now's when the benefit kicks in. It's all bonus cancer killing time now!". I've built up the importance of chemotherapy in my head so much. To have it taken away because I'm not healthy enough to receive it is beyond deflating.
Deflated. That's what I am. It's been hard to recognise or label because this is all so out of character for me. Pre-cancer Ash was always up. Zero shortage of energy. Zero shortage of positivity. But I'm faking my way through the day. I haven't wanted to blog because then you'd all know. All your messages about my strength and courage... well let's just say I don't exactly feel like I'm living up to all the hype. And as much as I have no shortage of support in my life, when I try to explain what's going on inside my head, no one really gets it (not that I want anyone I love to know what it's truly like to be told you're going to die). Or it's just too hard for them to hear. Or more likely, I just can't bring myself to be honest about it, because it makes everyone so unspeakably sad. So there I am. Deflated and isolated to boot.
I'll let that be the end of this bitch session. Sorry this wasn't exactly an uplifting update. Did any of you actually want to hear any of that? Was getting any of that off my chest worth the collective increase of worry my friends and family are going to feel now? Or are they, just like me, feeling a variation of the same things and we're all just wearing our "it's all going to be ok" masks to get us though? Maybe... Maybe not.
Back to the honesty. I can honestly say that I hope to write again soon. And with a SIGNIFICANTLY better story to tell. Thanks for listening...
Much love,
Ashlyn
Friday, 23 November 2012
Sunday, 16 September 2012
With love from Phoenix
Hi everyone,
I hope that you are all enjoying the Facebook group. I know I am. It can be really emotional at times for me, but this outpouring of love really does boost my spirits. How could it not??? Again, I can't comment on every single post, but I do read them all. So thank you so much for the messages. And please keep them coming. I have these intense moments where I feel so isolated by this diagnosis... Like no one could ever understand. Like there's me, and then there's everyone else... But these messages fold me right back into a safer place (emotionally speaking). So one last time, thank you.
For those of you who don't know, Corey and I are in Phoenix. With the help of many, I was whisked away more than a week ago to come down here. My dad and Corey joined me. We've spent the majority of our time with a fantastic group of Naturopathic doctors. If you're interested in googling, I'm seeing Dr. Rubin at the Naturopathic Specialists clinic. I was introduced to Dr. Rubin by a Vancouver based doctor who I'll refer to as Dr. H. She's the best. She came to see me when I was coming out of sedation after having my portacath put in at VGH. I woke up and there was this beautiful blonde woman standing next to Corey. She grabbed my hand, told me she had gone over my entire case and said "There's so much we can do. There's so much so much we can do for you. And we're going to start by getting you down to Phoenix. How's this Friday sound to you?" Awesome!
So for the last week I have been tested and tested and tested again. We are going to get to the bottom of this. The idea being that if we can find exactly what it is that I'm deficient in or make too much of, then we can fix the problem with nutrition and supplements that will help chemo be more effective and also help keep me healthy during my treatments. And it's not just nutrition and supplements. I'm also participating in something called Emotional Freedom Technique (EFT). It's basically a way to let go of all the negative emotions surrounding this ordeal, and gaining back control by tapping different points in your body. Some of the stuff I'm doing down here, I may have at one point thought of as rather foo-foo, but now I'm ALL IN!! As my friend Nadia just posted in the group, healing comes in all kind of forms, and I need to heal. There's nothing I will turn down at this point.
We're not just down here to see naturopaths either. Dr H has got me seeing other oncologists down here who are leaders in their field. In fact, tomorrow we are heading to the Mayo clinic. Dr H is also looking into getting another opinion from Johns Hopkins. So basically we are leaving no stone unturned.
What I'm dealing with most these days is being intensely emotional. This has been the longest I've ever been apart from Lyla. Not having her with me when I feel like my days are numbered is honestly too hard to bare. I'm always having to distract myself. It's as though I have whiplash... On one side, the orthodox medical community, the one I grew up trusting and believing in my whole life, keeps telling me I have 6 months to 2 years. On the other side, the new folks I've just met are telling me that there's so much we can do. That it's not necessarily over. Im trying so hard to hand over my faith to them... But it's a lifetime worth of thinking that I have to undo here... And without Lyla around, it's so much easier to fall to pieces. When she's with me I can be strong for her. Without having to turn into "strong mommy for my daughter" I can turn into a bit of a mess. Giving someone a death sentence truly is a cruel and unusual punishment...
Dr H says that the people who are the most successful at beating the odds are those who manage to turn their cancer into a gift. The goal is to somehow find out why this was meant for me... What I'm meant to get out of this...I'm still searching. For the time being though, I am absolutely thrilled about this years walk/run for the cure! There are so many people signed up! I'd really like to have both Ashlyn's Angels teams meet up before the race so we can all walk together. Thank you so much to everyone who is participating or has donated to one of the teams. If this isn't your cup of tea, stay
tuned because we have a few fundraising events coming up and there's going to be some awesome stuff to be won/incredible times to be had.
Well that's it for now. I've got to head to bed so I'll be rested for tomorrow's full day of treatmentsn and trip to the Mayo. Wish us luck!
Much love,
Ash
I hope that you are all enjoying the Facebook group. I know I am. It can be really emotional at times for me, but this outpouring of love really does boost my spirits. How could it not??? Again, I can't comment on every single post, but I do read them all. So thank you so much for the messages. And please keep them coming. I have these intense moments where I feel so isolated by this diagnosis... Like no one could ever understand. Like there's me, and then there's everyone else... But these messages fold me right back into a safer place (emotionally speaking). So one last time, thank you.
For those of you who don't know, Corey and I are in Phoenix. With the help of many, I was whisked away more than a week ago to come down here. My dad and Corey joined me. We've spent the majority of our time with a fantastic group of Naturopathic doctors. If you're interested in googling, I'm seeing Dr. Rubin at the Naturopathic Specialists clinic. I was introduced to Dr. Rubin by a Vancouver based doctor who I'll refer to as Dr. H. She's the best. She came to see me when I was coming out of sedation after having my portacath put in at VGH. I woke up and there was this beautiful blonde woman standing next to Corey. She grabbed my hand, told me she had gone over my entire case and said "There's so much we can do. There's so much so much we can do for you. And we're going to start by getting you down to Phoenix. How's this Friday sound to you?" Awesome!
So for the last week I have been tested and tested and tested again. We are going to get to the bottom of this. The idea being that if we can find exactly what it is that I'm deficient in or make too much of, then we can fix the problem with nutrition and supplements that will help chemo be more effective and also help keep me healthy during my treatments. And it's not just nutrition and supplements. I'm also participating in something called Emotional Freedom Technique (EFT). It's basically a way to let go of all the negative emotions surrounding this ordeal, and gaining back control by tapping different points in your body. Some of the stuff I'm doing down here, I may have at one point thought of as rather foo-foo, but now I'm ALL IN!! As my friend Nadia just posted in the group, healing comes in all kind of forms, and I need to heal. There's nothing I will turn down at this point.
We're not just down here to see naturopaths either. Dr H has got me seeing other oncologists down here who are leaders in their field. In fact, tomorrow we are heading to the Mayo clinic. Dr H is also looking into getting another opinion from Johns Hopkins. So basically we are leaving no stone unturned.
What I'm dealing with most these days is being intensely emotional. This has been the longest I've ever been apart from Lyla. Not having her with me when I feel like my days are numbered is honestly too hard to bare. I'm always having to distract myself. It's as though I have whiplash... On one side, the orthodox medical community, the one I grew up trusting and believing in my whole life, keeps telling me I have 6 months to 2 years. On the other side, the new folks I've just met are telling me that there's so much we can do. That it's not necessarily over. Im trying so hard to hand over my faith to them... But it's a lifetime worth of thinking that I have to undo here... And without Lyla around, it's so much easier to fall to pieces. When she's with me I can be strong for her. Without having to turn into "strong mommy for my daughter" I can turn into a bit of a mess. Giving someone a death sentence truly is a cruel and unusual punishment...
Dr H says that the people who are the most successful at beating the odds are those who manage to turn their cancer into a gift. The goal is to somehow find out why this was meant for me... What I'm meant to get out of this...I'm still searching. For the time being though, I am absolutely thrilled about this years walk/run for the cure! There are so many people signed up! I'd really like to have both Ashlyn's Angels teams meet up before the race so we can all walk together. Thank you so much to everyone who is participating or has donated to one of the teams. If this isn't your cup of tea, stay
tuned because we have a few fundraising events coming up and there's going to be some awesome stuff to be won/incredible times to be had.
Well that's it for now. I've got to head to bed so I'll be rested for tomorrow's full day of treatmentsn and trip to the Mayo. Wish us luck!
Much love,
Ash
Thursday, 30 August 2012
You might want to sit down for this
There's absolutely no delicate way to say this... well maybe there is, but I'm too exhausted and heavily medicated to find it. The cancer is back. It's bad. It's just about as bad as it could be. Unless something really shocking comes out in the next 24 hours, I won't be dying in the next few days, but we are talking about my life in terms of how to extend it.
Here's the background. We thought the pain I've been having for months was kidney stones. We had ultrasounds and x-rays and CT scans that confirmed there were a few small pesky stones in my right kidney. There was a lot of waiting and a lot of pain, but finally on August 1st I had surgery to remove the stones. When I woke up I found my surgeon looking over me telling me there was nary a stone to be found. What the hell?? Had I passed it?? Maybe, but probably not. "Come see me in 6 weeks" he says. Uhhhhhh, ok.
Recovery from this surgery did not go well. Please trust me when I say that this is a huge understatement. We ended up in emerg at one point due to the pain. Long story short, there was a huge blot clot, they did blood tests, gave me morphine and sent me on my way. Later that week I have a follow up with my doctor. At this point, I'm in the doctors office once or twice a week for more pain meds. I have built up a very high tolerance to the narcotics and pain management has become somewhat of an issue.
During all these visits I start to talk to the various doctors I'm seeing about my spidey senses. I'm starting to think that this is not about my kidney at all. I have years of experience with kidney pain and it has always been in my back. But the pain I'm having is in my groin/pelvis. I'm told more or less that this is just referred pain from the kidney stones... but I knew. I knew it wasn't. I was tired. I was tired in an odd sort of way. I have never been a good napper. But I needed to sleep and I could have fallen asleep anywhere. I had no energy. I was taking an unusually long time to recover from a very simple surgery. Tingle, tingle, tingle.
Somewhere along the way, I start to get short of breath. Finally I see my regular family who, in an effort to leave no stone unturned, sent me for more tests, this time including a D-dimer test. This test is to figure out if I've got a blood clot somewhere. She calls me back that evening at home (Lyla's 2nd birthday) and says I need to go to emerg, because my numbers were high and I needed to finish the workup. Hours and hours later at emerg they order me a chest CT with contrast. The ER doc comes back and says, good news there's no clot in my lungs. My shortness of breath is probably due to generally feeling shitty after the surgery combined with the ridiculous amount of pain killers I'm on.
And then he says: "I take it you know about these lymph nodes...." Awkward pause.
No. No we didn't. Yes they were there over a year ago at the time of my diagnosis, but as far as I know, chemo got them. Well, these are bigger than they were at the time of your diagnosis, and there's a new one there now as well. "You should follow up on that", he says. No shit Sherlock. Corey and I walk out of the hospital in total silence. We didn't say a word to each other until we hit fresh air in the parking lot and Corey just lets out an angry, "SHIT". I start crying. We knew. We knew something was wrong. I knew it was back. But my rock of a husband immediately goes into protective mode and comforts me with all the other things it could be. Still, we drove home in such shock that it wasn't until we pulled into the drive way that I noticed we left the hopsital with the IV still stuck in my arm. Awesome. We tested my mum's rusty nursing skills... turns out she's the best of them all. She's actually the only one that manages not to leave me with a bruise. It does go to show that there's nothing like a mother's touch.
In the morning I call the cancer agency (a number I sadly still have memorised). I'm crying to the receptionist - I blame my tears on the narcotics - and she gets my new oncologist (my original one is on sabatical) to call me straight away. Once he's seen the report from emerg he orders a PET scan. Now I know people who have waited months to get a PET scan. I got mine in 2 days. Tingle, tingle, tingle.
While I'm waiting for the results I'm in my doctors office again for more pain meds. It's the end of the day last Monday. She's as anxious as I am about the results and decides to leave me in the examining room to go call the cancer agency on my behalf. I'm waiting with Lyla. I'm waitng for too long. She's gone for too long. My spidey senses are no longer tingling, but vibrating throughout my whole body and if I didn't have Lyla there Iwould have fainted just waiting for my doc to finally walk back through the door.
In she comes, as sad as I've ever seen her and she knows that I know. I can honestlly say that my doctor loves me. We're hugging and I'm crying out in her office yelling I can't die, I can't leave Lyla, she needs me, she needs me, she needs me. Somehow in the middle of my hysteria I actually manage to listen to the information my doc is trying to share with me. There is spread in the lymph nodes at the original site as well as a large mass in my pelvis. There's significant spread throughout my lymphs nodes down through my belly and back. It's in my bones. At least in 2 vertebrae, my illiac bones, the top of my leg bones. The mass in my pelvis may or may not be in my ovaries. My uterus is also involved. So the pain I've been having in my groin that refferes up to my kidney is actually a huge cancer mass that's pressing on my bladder and uereter. That's now caused some nephrosis of my kidney. Some of this info I gathered later, but I thought I'd just mention it all in one go.
Because I'm not suffering enough at this time, I choose to break my heart and my doctor's even further by sobbing out, "Am I going to die???". She looks at me and says, "Maybe". We're holding hands at this point and I swear her grasp is the only thing that is keeping me tethered to sanity. "Is cancer going to be the thing that kills me?". "It looks that way".
I am up and down pacing around this tiny examining room wavering between breaking down and steeling my nerves and yelling I'm never going to leave my daughter. I JUST WON'T. Meanwhile Lyla is all, "You need a hug mommy?, You ok mommy?" She's turning on the charm, clearly aware something is going very wrong and is doing her best to make me happy. She's pulling out all her tricks in an attempt to get praise and see me smile. "I love you mommy".
My doctor has now called my mum and Corey. Both are out of their minds with worry and although they don't know what i know yet, they've gone to worst place possbile. My mum's closer to the office so she gets there first. We have the hug no monther and daughter are ever supposed to have. Her worst nightmare has come true and i feel like it's all my fault. After she finishes telling me I'm never to appologize to her again about this, we make a plan to get home. We spend a very sombre night at home with family and waver between crying and sharing I love you's, to gathering our strength and making a plan to outwit, outplay, outlast cancer.
We are seen by my new oncoligt the next day. Dr V. walks us through the PET scan and it's bad. Worse than we had imagined. There's cancer in so many different places, presenting in such unusual ways that he can't confidently tell us what kind of cancer I've got. He tells us about all the tests that stand in our way of starting chemo asap. In the end, he decides the best thing to do is admit me to the hospital in the cancer agency in order to expedite all the tests and scans to come. That's where I've been since last Wednesday.
Throughout the last week we find that there are 3 options the cancer could be.
1: Recurrence of my breast cancer. This would be the worst. There would be no cure. The small hope we have is that the cancer activity shown on the PET scan is unusual for breast cancer. Fingers crossed.
2: Lymphoma. It would be stage 4 as it has spread to my bones, but this is what we are hoping for. Chemo has the best chance of melting this away.
3. Ovarian: this is a long shot, because it doesn't seem to be behaving like an ovarian cancer, but we have to consider it due to the location of the mass in my pelvis and the fact that the uterus was involved.
I've had a bronchoscopy, a uteran biopsy, a bone scan and a small surgery to insert a stent in my kidney. And I've waited. I haven't had a second alone. I've been surrounded by my family and best friends from sun up to sun down. And yesterday I finally heard.
It's option #1. My breast cancer is back and it's incurrable. I start chemo today. The plan is that I stay on chemo for as long as it continues to work. Once it stops working I'll switch to a new chemo. I'll keep doing this until there are no more chemo's left to try. We are hoping that one of these chemo's will put me into remission. Any remission I have will be temporary. The cancer will come back.
I don't have the words to explain what i'm going through. The truth is, I bounce back and forth between my emotions so fast that it gives me nausea. I'm hoping for 3 years. The average is 2. Some only get 6 months. At this very moment i'm feeling numb. It could be the drugs.
I can't believe I'm writing this. I can't believe that this is happening to me. Unfair doesn't even begin to get at the unjustness of what I'm feeling. Good god, I can't believe i won't get to see my daughter grow up!!!!! My Lyla..... I have no fucking idea how to face this.....
I have no intention of going quietly. I will not be one of those people who refuse treatment. I want the book thrown at me. I will get a second opinion. A third if I have to. I have so many people offering to help. Everyone's heard of the people who are told 2 years, but then get 10. I am going to do absolutely everything I can to be one of those people.
I need to stop writing now. It's taken me days to get this all down. I chose to write a fairly detailed account of my last few weeks so that I wouldn't have to tell the story over and over again. With the help of my bestest friends I have set up a facebook group, Ashlyn's Angels, in order to share information more effectively. The group is open to anyone.
And my chemo just showed up. Here goes round one.
Please forgive the typos. I don't have time to proofread, and I've done this whole thing on the ipad.
I don't know how to end this post, so I'll just say I love you all.
Much love,
Ashlyn
Here's the background. We thought the pain I've been having for months was kidney stones. We had ultrasounds and x-rays and CT scans that confirmed there were a few small pesky stones in my right kidney. There was a lot of waiting and a lot of pain, but finally on August 1st I had surgery to remove the stones. When I woke up I found my surgeon looking over me telling me there was nary a stone to be found. What the hell?? Had I passed it?? Maybe, but probably not. "Come see me in 6 weeks" he says. Uhhhhhh, ok.
Recovery from this surgery did not go well. Please trust me when I say that this is a huge understatement. We ended up in emerg at one point due to the pain. Long story short, there was a huge blot clot, they did blood tests, gave me morphine and sent me on my way. Later that week I have a follow up with my doctor. At this point, I'm in the doctors office once or twice a week for more pain meds. I have built up a very high tolerance to the narcotics and pain management has become somewhat of an issue.
During all these visits I start to talk to the various doctors I'm seeing about my spidey senses. I'm starting to think that this is not about my kidney at all. I have years of experience with kidney pain and it has always been in my back. But the pain I'm having is in my groin/pelvis. I'm told more or less that this is just referred pain from the kidney stones... but I knew. I knew it wasn't. I was tired. I was tired in an odd sort of way. I have never been a good napper. But I needed to sleep and I could have fallen asleep anywhere. I had no energy. I was taking an unusually long time to recover from a very simple surgery. Tingle, tingle, tingle.
Somewhere along the way, I start to get short of breath. Finally I see my regular family who, in an effort to leave no stone unturned, sent me for more tests, this time including a D-dimer test. This test is to figure out if I've got a blood clot somewhere. She calls me back that evening at home (Lyla's 2nd birthday) and says I need to go to emerg, because my numbers were high and I needed to finish the workup. Hours and hours later at emerg they order me a chest CT with contrast. The ER doc comes back and says, good news there's no clot in my lungs. My shortness of breath is probably due to generally feeling shitty after the surgery combined with the ridiculous amount of pain killers I'm on.
And then he says: "I take it you know about these lymph nodes...." Awkward pause.
No. No we didn't. Yes they were there over a year ago at the time of my diagnosis, but as far as I know, chemo got them. Well, these are bigger than they were at the time of your diagnosis, and there's a new one there now as well. "You should follow up on that", he says. No shit Sherlock. Corey and I walk out of the hospital in total silence. We didn't say a word to each other until we hit fresh air in the parking lot and Corey just lets out an angry, "SHIT". I start crying. We knew. We knew something was wrong. I knew it was back. But my rock of a husband immediately goes into protective mode and comforts me with all the other things it could be. Still, we drove home in such shock that it wasn't until we pulled into the drive way that I noticed we left the hopsital with the IV still stuck in my arm. Awesome. We tested my mum's rusty nursing skills... turns out she's the best of them all. She's actually the only one that manages not to leave me with a bruise. It does go to show that there's nothing like a mother's touch.
In the morning I call the cancer agency (a number I sadly still have memorised). I'm crying to the receptionist - I blame my tears on the narcotics - and she gets my new oncologist (my original one is on sabatical) to call me straight away. Once he's seen the report from emerg he orders a PET scan. Now I know people who have waited months to get a PET scan. I got mine in 2 days. Tingle, tingle, tingle.
While I'm waiting for the results I'm in my doctors office again for more pain meds. It's the end of the day last Monday. She's as anxious as I am about the results and decides to leave me in the examining room to go call the cancer agency on my behalf. I'm waiting with Lyla. I'm waitng for too long. She's gone for too long. My spidey senses are no longer tingling, but vibrating throughout my whole body and if I didn't have Lyla there Iwould have fainted just waiting for my doc to finally walk back through the door.
In she comes, as sad as I've ever seen her and she knows that I know. I can honestlly say that my doctor loves me. We're hugging and I'm crying out in her office yelling I can't die, I can't leave Lyla, she needs me, she needs me, she needs me. Somehow in the middle of my hysteria I actually manage to listen to the information my doc is trying to share with me. There is spread in the lymph nodes at the original site as well as a large mass in my pelvis. There's significant spread throughout my lymphs nodes down through my belly and back. It's in my bones. At least in 2 vertebrae, my illiac bones, the top of my leg bones. The mass in my pelvis may or may not be in my ovaries. My uterus is also involved. So the pain I've been having in my groin that refferes up to my kidney is actually a huge cancer mass that's pressing on my bladder and uereter. That's now caused some nephrosis of my kidney. Some of this info I gathered later, but I thought I'd just mention it all in one go.
Because I'm not suffering enough at this time, I choose to break my heart and my doctor's even further by sobbing out, "Am I going to die???". She looks at me and says, "Maybe". We're holding hands at this point and I swear her grasp is the only thing that is keeping me tethered to sanity. "Is cancer going to be the thing that kills me?". "It looks that way".
I am up and down pacing around this tiny examining room wavering between breaking down and steeling my nerves and yelling I'm never going to leave my daughter. I JUST WON'T. Meanwhile Lyla is all, "You need a hug mommy?, You ok mommy?" She's turning on the charm, clearly aware something is going very wrong and is doing her best to make me happy. She's pulling out all her tricks in an attempt to get praise and see me smile. "I love you mommy".
My doctor has now called my mum and Corey. Both are out of their minds with worry and although they don't know what i know yet, they've gone to worst place possbile. My mum's closer to the office so she gets there first. We have the hug no monther and daughter are ever supposed to have. Her worst nightmare has come true and i feel like it's all my fault. After she finishes telling me I'm never to appologize to her again about this, we make a plan to get home. We spend a very sombre night at home with family and waver between crying and sharing I love you's, to gathering our strength and making a plan to outwit, outplay, outlast cancer.
We are seen by my new oncoligt the next day. Dr V. walks us through the PET scan and it's bad. Worse than we had imagined. There's cancer in so many different places, presenting in such unusual ways that he can't confidently tell us what kind of cancer I've got. He tells us about all the tests that stand in our way of starting chemo asap. In the end, he decides the best thing to do is admit me to the hospital in the cancer agency in order to expedite all the tests and scans to come. That's where I've been since last Wednesday.
Throughout the last week we find that there are 3 options the cancer could be.
1: Recurrence of my breast cancer. This would be the worst. There would be no cure. The small hope we have is that the cancer activity shown on the PET scan is unusual for breast cancer. Fingers crossed.
2: Lymphoma. It would be stage 4 as it has spread to my bones, but this is what we are hoping for. Chemo has the best chance of melting this away.
3. Ovarian: this is a long shot, because it doesn't seem to be behaving like an ovarian cancer, but we have to consider it due to the location of the mass in my pelvis and the fact that the uterus was involved.
I've had a bronchoscopy, a uteran biopsy, a bone scan and a small surgery to insert a stent in my kidney. And I've waited. I haven't had a second alone. I've been surrounded by my family and best friends from sun up to sun down. And yesterday I finally heard.
It's option #1. My breast cancer is back and it's incurrable. I start chemo today. The plan is that I stay on chemo for as long as it continues to work. Once it stops working I'll switch to a new chemo. I'll keep doing this until there are no more chemo's left to try. We are hoping that one of these chemo's will put me into remission. Any remission I have will be temporary. The cancer will come back.
I don't have the words to explain what i'm going through. The truth is, I bounce back and forth between my emotions so fast that it gives me nausea. I'm hoping for 3 years. The average is 2. Some only get 6 months. At this very moment i'm feeling numb. It could be the drugs.
I can't believe I'm writing this. I can't believe that this is happening to me. Unfair doesn't even begin to get at the unjustness of what I'm feeling. Good god, I can't believe i won't get to see my daughter grow up!!!!! My Lyla..... I have no fucking idea how to face this.....
I have no intention of going quietly. I will not be one of those people who refuse treatment. I want the book thrown at me. I will get a second opinion. A third if I have to. I have so many people offering to help. Everyone's heard of the people who are told 2 years, but then get 10. I am going to do absolutely everything I can to be one of those people.
I need to stop writing now. It's taken me days to get this all down. I chose to write a fairly detailed account of my last few weeks so that I wouldn't have to tell the story over and over again. With the help of my bestest friends I have set up a facebook group, Ashlyn's Angels, in order to share information more effectively. The group is open to anyone.
And my chemo just showed up. Here goes round one.
Please forgive the typos. I don't have time to proofread, and I've done this whole thing on the ipad.
I don't know how to end this post, so I'll just say I love you all.
Much love,
Ashlyn
Monday, 28 May 2012
One Year Later
One year ago today I had my first round of chemo. Good god, I was so scared. Of all the chemo I got, the first was the worst. Barely a week from being diagnosed, my anxiety level was at an all time high. My chemo nurse opened up a private room for me because, "I just can't put you through that. Not when I know about the week you've just had". What she couldn't put me through was being in a room with 3 to 4 other cancer patients getting their chemo, in various states of hair loss, some of whom looked a lot closer to dead than alive. I don't remember that nurse's name, but I often think about what she did for me that day. Giving me a room to shed a few tears, wonder how the hell this all happened, and sit with my husband in private was a kindness I'll never forget.
I'm happy to report that I don't think about chemo every day. The Big C is never far from my mind, but the bad times don't haunt me. I can remember every single bad time with insane clarity, but I don't focus on them. So a year later I often get asked "What was the worst part?". Most people would guess either chemo or surgery. I would tell you, and I think my fellow survivors would agree, that the worst part is when you get diagnosed. The stress of the days before you know for sure.... The terror after you know and you are sure every single minute you aren't in treatment is killing you.... The flurry of tests and scans that get ordered.... It all convinces you that YOUR case is dire. Because in the midst of your world crashing, you see the doctors, the professional ones, and they are HUSTLING. Nothing makes you feel more nervous than doctors and nurses who look nervous for you. In the beginning, I believe every person diagnosed with cancer figures they are going to be one of the one's that's gone in a matter of days. We've all heard about that happening. And because getting cancer at all seems so terrible, you're sure it's going to be as terrible as it can be.
So when I hear of someone being diagnosed with breast cancer now, that's where my brain takes me. To that terrible beginning. But how can you explain to someone who's facing this terrible truth, the chemo and the surgeries, that things are about to get better?? And I also know that they don't want to hear that things are going to get better. What they want to hear, what I remember so desperately wanting to hear, is "You're not going to die". Your friends and family may tell you that, but no one in a white coat will. That's just not how they do things. But it's the white coats you want to hear it from. I tried to convince my medical oncologist to give me a ball-park figure. "Just throw some odds at me" I said, trying to trick him into thinking I that I was as cool as a cucumber and none of this was phasing me . He firmly crossed his arms and said, "Ashlyn, you're not going to play me and I won't be backed into a corner. We're going to wait and see". And thus began months and months of people talking to me in non-specifics, promising me nothing, but telling me I was doing great.
So when I began radiation 6 months later, I was good and pissed off to find my chart did indeed have plenty of specific information. Waiting for my radiation oncologist to show up one day, I took a peak at my chart and saw "Diagnosis: triple negative, locally advanced T4N2, invasive left breast carcinoma". The internet told me that was considered stage 4 despite that fact that the cancer hadn't spread to another distant part of my body. When I eventually spoke to him about it, he essentially shrugged it off with a "Oh don't worry about that. You're significantly down-graded now." Ok that was a brief bit of good news. But then he follows it up with a look over my file and "Uh yeah, I would have given you a 30% chance of making it when we met. Now, it's more like 75%". I know what he said was supposed to make me delighted about how far I'd come, but I WAS. SO. PISSED. OFF.
I felt so managed. What did they think I was going to do with that information? Die from the shock? Give up? It was MY effing diagnosis, MY effing cancer, and I SHOULD have been effing told. I bawled to my husband and mum. And when I went to my dad, I was sure that he'd be outraged on my behalf. Instead, in his calm and reassuring way, he gently pointed out that I was really and truly missing the point. The point was that I was still here having this argument at all. I don't know how the stress of that information could have affected me a year ago today. We still don't know a lot about cancer. But there's a boat load of knowledge about stress. And it's a killer. So I'm not pissed off about it anymore. My stage was but a number (and some letters).
In writing this I've realized that a year later what I'm still doing is trying to sort this all out. The active treatments are over, but it's not really over. I'm still off work and waiting for one final reconstructive surgery. I've developed a nasty bit of radiation fibrosis that requires massage therapy (not the lovely, relaxing kind) every week. And I'm tired. I'm tired all the time. Every bit of spare time I have, I'm hoping to have a nap. They tell me this is all par for the course. They tell me I'm doing great. A year ago today everything about my case was urgent. Now it seems like an afterthought. In under a year the pendulum has swung from Dire Peril to Go About Your Day/All's Well That End's Well. That is turning out to be a much harder adjustment than I had expected.
But as I blather on about it I'm forced to remember (again) that here I am blathering at all. 365 days ago I was afraid I was dying. Today I complained about my hair looking like Sonic the Hedgehog and whined about not having time for a nap. So I guess I'll shut up about it now.
The last thing I want to mention is that I was at a very timely event yesterday. I walked back into my place of work for the TELUS Day of Giving to volunteer with a great group of people to tie breast cancer ribbons for the Canadian Breast Cancer Foundation. I can promise you that one year ago I would never have thought I'd be in a cafeteria sharing heart-felt cancer stories and feeling the warm and fuzzies you can only get from a sense of community. Getting diagnosed was such an isolating experience. Yesterday I was reminded that it doesn't need to be. There's a massive sisterhood out there. If you or anyone you know has breast cancer, make a connection. When it all feels so out of control, it feels so good to just DO something. Even if that's just making a new friend and talking to someone who's been in your shoes. I learnt that lesson along the way, but I'd forgotten it too. It felt so good to be reminded.
So I'll leave you with that. For now, please consider no news as good news. By the time I have an update about my next surgery, hopefully I'll have sorted some more of this out. And please, as always, thank you all for your support. It mattered. Every post, every message, every call, meant so much to me.
Much love,
Ashlyn
Friday, 27 January 2012
For Bree
Somewhere on this blog I've said I'd been through worse. That holds true. Being diagnosed with cancer is obviously a horrible, horrible thing. But at the root of the matter, what everyone fears is that you'll lose the battle. Sure I was afraid of chemo. I was afraid of a lot of things. But more than anything I was afraid I was going to die. I was so afraid to leave everyone I loved. Because I knew what they would have to go through.
Six years ago today I lost one of the most important people in my life. She'd been my best friend since we were 9 years old. We did all of our growing up together. To this day I know exactly what she'd say to me in any given situation. She was someone so influential in my life, that if you know me, well then you know a part of her too. She was the weird to my spazz and she taught me everything good I've ever learned about friendship.
In order to appreciate that, you need to know that we went to an all-girls high school. Take your average high school scene and don't just double the estrogen, quadruple it. Our friendship was blessed by never having had crushes on the same boy. That's rare amongst girlfriends. Even more rare was Bree's infectious good mood and ability to be happy for someone else. I'm sure we've all been the victims of our girlfriend's passive-aggressive put-downs. For example: you get a pair of hot boots for your birthday and your friend goes, "Must be nice to have parents with money". That wasn't Bree.
I will always remember the day that I got an A on my first History 12 test. This was a big deal because our teacher was a notorious hard ass (a hard ass I totally worshiped, mind you). Bree came running up to me, so genuinely happy that I had done that well... to the surprise of both her and most of the basketball team ;) I remember being self conscious for a moment. So many girl vs girl experiences had taught me to be wary of such a moment. Am I being set up for something? You know, the "You're pretty. Pretty ugly" set up. But she wasn't setting me up. She was genuinely happy for me. Ever since then I've known that THAT was the friend I wanted to be. By example, she taught me how much better it felt to enjoy someone's accomplishment than to envy them for it. At the same time, this ridiculous happiness for me may have lead me to pursue a BA in History. Super useful. I may need to re-think this awesome moment...
Anyhow, I wanted to give everyone an update. I am, for the most part, finished with my active treatments. I've had the bi-lateral mastectomy. It sucked. The drains sucked. It hurt more than I thought it would. It was endlessly frustrating re-learning how to do everything that I use my arms for. But that's mostly over now so I don't think about it too much. Radiation has also come and gone. My radiation team was awesome. If you had told me I'd actually enjoy going to radiation I would have told you to go take some more crazy pills. But wouldn't you know it, it wasn't so bad after all. My skin went from original recipe to extra-tasty crispy, but it was short lived. And they gave out candy at all the treatments. "Oh Ash! But you have cancer! You shouldn't be eating sugar!" Too late. I'm eating sour keys in honor of Breanne right now. You're all just going to have to deal with that. Like my oncologist said, "Why bother saving your life if you're not going to enjoy it once in a while?". I still see my plastic surgeon once a week and have a few follow ups to go, but I'm hoping that sometime soon one of these doctors is going to throw the word REMISSION at me. I'll let you know.
Back to Bree. Like I said. losing her was worse than any of this. When I was diagnosed, it felt like an immediate death sentence. I was already feeling everyone's future grief. When the panic faded and it became clear that I wasn't going to die - not just yet, thank you very much - I felt an overwhelming sense of guilt. She was better than me. I was going to see this through and she wasn't going to see this at all. One of my oncologists told me later that he had me pegged at a 30% chance of making it. No matter what the percentage was, I had a fighting chance. Bree didn't. A drinking and driving car accident took her in a matter of seconds. This fantastic person, this girl, woman, friend, daughter, sister, a better, more fun and funny, more intelligent and more beautiful than most, was just gone one morning. Everything I've gone through since my diagnosis doesn't compare to her loss. Despite that percentage, I feel like there was never really any other option than for me to make it. Having said that, I'm so painfully aware that some people don't.
We've got friends dealing with this kind of loss right now. Shortly after my diagnosis, our friend's brother got his own cancer diagnosis. He was put through the ringer. And today is his funeral. Being diagnosed with cancer is a very isolating experience. And so is the loss of a loved one. People can feel for you, but you always feel as though no one really, truly gets it. Today I know that people I really care about, really and truly get it. Now I know I'd actually prefer the isolation to having company in this kind of misery. S&C, if you're reading this, know that we're thinking of you.
What's next? That's the question I get most these days. To be honest I'm not sure. I guess there's going to be a bit of wait and see and then hopefully someday soon, someone will tell me I can stop holding my breath. Once again, I'll let you know.
Bree, je t'aimerai toujours.
Much love,
Ashlyn
P.S. AJM: You're pretty. Pretty awesome. I'm glad we got over that ;)
Six years ago today I lost one of the most important people in my life. She'd been my best friend since we were 9 years old. We did all of our growing up together. To this day I know exactly what she'd say to me in any given situation. She was someone so influential in my life, that if you know me, well then you know a part of her too. She was the weird to my spazz and she taught me everything good I've ever learned about friendship.
In order to appreciate that, you need to know that we went to an all-girls high school. Take your average high school scene and don't just double the estrogen, quadruple it. Our friendship was blessed by never having had crushes on the same boy. That's rare amongst girlfriends. Even more rare was Bree's infectious good mood and ability to be happy for someone else. I'm sure we've all been the victims of our girlfriend's passive-aggressive put-downs. For example: you get a pair of hot boots for your birthday and your friend goes, "Must be nice to have parents with money". That wasn't Bree.
I will always remember the day that I got an A on my first History 12 test. This was a big deal because our teacher was a notorious hard ass (a hard ass I totally worshiped, mind you). Bree came running up to me, so genuinely happy that I had done that well... to the surprise of both her and most of the basketball team ;) I remember being self conscious for a moment. So many girl vs girl experiences had taught me to be wary of such a moment. Am I being set up for something? You know, the "You're pretty. Pretty ugly" set up. But she wasn't setting me up. She was genuinely happy for me. Ever since then I've known that THAT was the friend I wanted to be. By example, she taught me how much better it felt to enjoy someone's accomplishment than to envy them for it. At the same time, this ridiculous happiness for me may have lead me to pursue a BA in History. Super useful. I may need to re-think this awesome moment...
Anyhow, I wanted to give everyone an update. I am, for the most part, finished with my active treatments. I've had the bi-lateral mastectomy. It sucked. The drains sucked. It hurt more than I thought it would. It was endlessly frustrating re-learning how to do everything that I use my arms for. But that's mostly over now so I don't think about it too much. Radiation has also come and gone. My radiation team was awesome. If you had told me I'd actually enjoy going to radiation I would have told you to go take some more crazy pills. But wouldn't you know it, it wasn't so bad after all. My skin went from original recipe to extra-tasty crispy, but it was short lived. And they gave out candy at all the treatments. "Oh Ash! But you have cancer! You shouldn't be eating sugar!" Too late. I'm eating sour keys in honor of Breanne right now. You're all just going to have to deal with that. Like my oncologist said, "Why bother saving your life if you're not going to enjoy it once in a while?". I still see my plastic surgeon once a week and have a few follow ups to go, but I'm hoping that sometime soon one of these doctors is going to throw the word REMISSION at me. I'll let you know.
Back to Bree. Like I said. losing her was worse than any of this. When I was diagnosed, it felt like an immediate death sentence. I was already feeling everyone's future grief. When the panic faded and it became clear that I wasn't going to die - not just yet, thank you very much - I felt an overwhelming sense of guilt. She was better than me. I was going to see this through and she wasn't going to see this at all. One of my oncologists told me later that he had me pegged at a 30% chance of making it. No matter what the percentage was, I had a fighting chance. Bree didn't. A drinking and driving car accident took her in a matter of seconds. This fantastic person, this girl, woman, friend, daughter, sister, a better, more fun and funny, more intelligent and more beautiful than most, was just gone one morning. Everything I've gone through since my diagnosis doesn't compare to her loss. Despite that percentage, I feel like there was never really any other option than for me to make it. Having said that, I'm so painfully aware that some people don't.
We've got friends dealing with this kind of loss right now. Shortly after my diagnosis, our friend's brother got his own cancer diagnosis. He was put through the ringer. And today is his funeral. Being diagnosed with cancer is a very isolating experience. And so is the loss of a loved one. People can feel for you, but you always feel as though no one really, truly gets it. Today I know that people I really care about, really and truly get it. Now I know I'd actually prefer the isolation to having company in this kind of misery. S&C, if you're reading this, know that we're thinking of you.
What's next? That's the question I get most these days. To be honest I'm not sure. I guess there's going to be a bit of wait and see and then hopefully someday soon, someone will tell me I can stop holding my breath. Once again, I'll let you know.
Bree, je t'aimerai toujours.
Much love,
Ashlyn
P.S. AJM: You're pretty. Pretty awesome. I'm glad we got over that ;)
Sunday, 18 December 2011
Clear Eyes, Full Hearts, Can't Lose.
I know it's been a while... What can I say? I've been busy with things I'd rather not be busy with...
For Christmas, I'd like you all to know me better. This is my favourite TVshow of all time. Please watch. It's worth your time...
Give all of us gathered here tonight
The strength to remember that life is so very fragile.
We're all vulnerable.
And we will all, at some point in our lives, fall.
We will all fall.
We must carry this in our hearts,
That what we have is special.
That it can be taken from us.
And when it is taken from us,
We will be tested.
We will be tested to our very souls.
We will now all be tested.
It is these times,
It this pain,
That allows us to look inside ourselves.
Clear eyes. Full hearts. Can't lose.
Much love,
Ash.
For Christmas, I'd like you all to know me better. This is my favourite TVshow of all time. Please watch. It's worth your time...
Give all of us gathered here tonight
The strength to remember that life is so very fragile.
We're all vulnerable.
And we will all, at some point in our lives, fall.
We will all fall.
We must carry this in our hearts,
That what we have is special.
That it can be taken from us.
And when it is taken from us,
We will be tested.
We will be tested to our very souls.
We will now all be tested.
It is these times,
It this pain,
That allows us to look inside ourselves.
Clear eyes. Full hearts. Can't lose.
Much love,
Ash.
Friday, 30 September 2011
Weekend Update
This weekend update does not come to you by Tina Fey. I wish.
It's three and a half weeks after my last chemo session and I'm finally feeling myself again. Like really myself again. The myself from before I knew I ever had cancer. I don't feel like I'm having "good days and bad days", but that I just feel like me again. Really, towards the end of chemo "good days" were more like "well, I'm not curled up in bed days, so that's a plus". It's awesome to have all this energy back. And just in time too. Lyla learned to walk about a week ago or so and I haven't been able to sit down since. I'm loving every second of it.
The reason for my delay in blogging is two fold: One, that last round of side effects was a doozy. I know I said I was all happy to be done 6+ months of chemo in 4, until it felt like, wow, I just got pounded with 6+ months of chemo in 4. The second reason is that I've started to repel technology. Sometime in the last few weeks our house computer's hard drive crashed, the monitor on my work lap top stopped working, and my blackberry won't send emails. Corey's off today for his annual chefs-at-large-in-the-woods weekend so I have the run of his lap top for a few days. It feels great to be plugged back in, but man do I have a lot to catch up on, and not much time to do it in.
This Sunday is the Run for the Cure! This will be my first run since I used to do the Sun Run in elementary school. Remember when you were young and just had so much energy that you didn't need to train for a 10K run?? Now I'm most likely going to be walking this little 5K number... how the mighty have fallen. Thanks to everyone for your support of Team Smashlyn. I'm especially thankful to my sister-in-law Jeannie and her friend Jodie who organized the whole thing, as well as to everyone who donated to our team. We were close to $3000 last time I checked. I am sincerely touched by it all.
After the run, it's sayonara to the sisters. Tuesday October 4th is my surgery date. I'll be the first surgery of the day, so hopefully I'll only be in hospital for one night. I'm not sure exactly how I feel about the upcoming surgery. I think I may have floated back into a bit of denial because it all seems surreal now. When I was diagnosed and they told me I had to wait for surgery, I was thinking, "ARE YOU CRAZY??? CUT IT OUT RIGHT NOW!!!" But I've been feeling so good these days that if it wasn't for the bald head, sparse eyebrows and the whopping 12 eyelashes I have left, I'd be able to forget I have cancer. I'm also somewhat feeling irrationally guilty over Righty. She never did anything wrong. Lefty was the traitor. Now they're both going. It somehow seems unfair...
So that's it for now. I just got my t-shirt for the run (i picked a survivor shirt by the way!) and I can't wait to get out there and be part of something so positive for a change. I'll let you know how it goes. Fingers crossed for good weather!
Much love,
Ashlyn
It's three and a half weeks after my last chemo session and I'm finally feeling myself again. Like really myself again. The myself from before I knew I ever had cancer. I don't feel like I'm having "good days and bad days", but that I just feel like me again. Really, towards the end of chemo "good days" were more like "well, I'm not curled up in bed days, so that's a plus". It's awesome to have all this energy back. And just in time too. Lyla learned to walk about a week ago or so and I haven't been able to sit down since. I'm loving every second of it.
The reason for my delay in blogging is two fold: One, that last round of side effects was a doozy. I know I said I was all happy to be done 6+ months of chemo in 4, until it felt like, wow, I just got pounded with 6+ months of chemo in 4. The second reason is that I've started to repel technology. Sometime in the last few weeks our house computer's hard drive crashed, the monitor on my work lap top stopped working, and my blackberry won't send emails. Corey's off today for his annual chefs-at-large-in-the-woods weekend so I have the run of his lap top for a few days. It feels great to be plugged back in, but man do I have a lot to catch up on, and not much time to do it in.
This Sunday is the Run for the Cure! This will be my first run since I used to do the Sun Run in elementary school. Remember when you were young and just had so much energy that you didn't need to train for a 10K run?? Now I'm most likely going to be walking this little 5K number... how the mighty have fallen. Thanks to everyone for your support of Team Smashlyn. I'm especially thankful to my sister-in-law Jeannie and her friend Jodie who organized the whole thing, as well as to everyone who donated to our team. We were close to $3000 last time I checked. I am sincerely touched by it all.
After the run, it's sayonara to the sisters. Tuesday October 4th is my surgery date. I'll be the first surgery of the day, so hopefully I'll only be in hospital for one night. I'm not sure exactly how I feel about the upcoming surgery. I think I may have floated back into a bit of denial because it all seems surreal now. When I was diagnosed and they told me I had to wait for surgery, I was thinking, "ARE YOU CRAZY??? CUT IT OUT RIGHT NOW!!!" But I've been feeling so good these days that if it wasn't for the bald head, sparse eyebrows and the whopping 12 eyelashes I have left, I'd be able to forget I have cancer. I'm also somewhat feeling irrationally guilty over Righty. She never did anything wrong. Lefty was the traitor. Now they're both going. It somehow seems unfair...
So that's it for now. I just got my t-shirt for the run (i picked a survivor shirt by the way!) and I can't wait to get out there and be part of something so positive for a change. I'll let you know how it goes. Fingers crossed for good weather!
Much love,
Ashlyn
Wednesday, 7 September 2011
It's Not Me, It's You!
I've had my last chemo session! Woot! When they told me my cancer was too advanced to wait three weeks between sessions and that I had to have it every two weeks instead, I was freaked out. But really, once I got a few sessions under my belt, I realized that chemo wasn't anything I needed to be afraid of. Don't get me wrong, chemo sucks. It's just not something to fear. It was very obviously working and now that I'm at the finish line, I'm so thankful that my case got me here in just over four months rather than six. I know I still have a few more bad days ahead of me, but frankly I just don't care. I'm finished chemo! Eat it cancer.
Next up: Surgery. I'll be getting a bi-lateral mastectomy and I'm meeting with my plastic surgeon today to discuss reconstruction. I know that getting radiation affects what they'll do in surgery, but I'm not sure to what extent. It'll be great to get those answers because, well, knowing is half the battle (Go Joe!).
I can't begin to tell you all how great these last few weeks have been for me. The love that's getting sent my way for finishing chemo is unreal. I think my Facebook notification broke yesterday from overuse. Well, really the love I've been getting this whole time is ridiculous. For example, my ten year old niece had a $5 and $10 birthday party this year. The idea is you bring a 5 dollar bill for the birthday girl and a 10 dollar bill for a cause of her choice. She chose to give the money to me so I can spend it at the naturopath. Are you crying yet??
I've been sent more cards, letters and books than I know what to do with. There's been countless offers to babysit and just recently another offer to use a friend's cabin for some down time. Someone's also just sent me a subscription to People Magazine and no one's owned up to it! WHO ARE YOU?? I love it! I love a magazine that I can actually complete the crossword puzzle in pen :) And just yesterday I got the greatest package sent to me from work. Inside were gift certificates, more than 200 donated personal assistant points, a beautiful card, and then a link to a 10 minute video they put together for me full of well wishes. They were from my fellow recruiters, team members I had hired, managers I've worked with, and all of them friends. I had to watch it more than once because I bawled through it the first time (happy tears I promise!) Liking your job and loving the people you work with is like winning the lottery. Who knew cancer could make a girl feel so lucky??
People keep telling me I'm handling this so well. That they love my positivity and strength and so on and so on. But listen here people, it's all because of you! Look at the kind of people I'm surrounded with. It's like the "It's not you, it's me" cliche in reverse. I had myself a nice little Sunday Funday on the Joe Fortes patio this weekend with my best girl friends (Dave, that includes you!) and Lord, did I feel lucky. I live a really good life. There's been some bad times these past few months, but hey, I've been through worse. Not everyone gets a fighting chance. Not everyone is surrounded by the best family, friends and colleagues there are to find. Every time I'm at the cancer agency there are people who are all alone. People without rides, and no one to sit with them. And I know there are people who abandon, or worse yet mistreat people they know with cancer. I can't even fathom a scenario like that because of all of you. You have all been a part of my fight. Please accept my sincerest thanks.
With much love,
Ashlyn
Next up: Surgery. I'll be getting a bi-lateral mastectomy and I'm meeting with my plastic surgeon today to discuss reconstruction. I know that getting radiation affects what they'll do in surgery, but I'm not sure to what extent. It'll be great to get those answers because, well, knowing is half the battle (Go Joe!).
I can't begin to tell you all how great these last few weeks have been for me. The love that's getting sent my way for finishing chemo is unreal. I think my Facebook notification broke yesterday from overuse. Well, really the love I've been getting this whole time is ridiculous. For example, my ten year old niece had a $5 and $10 birthday party this year. The idea is you bring a 5 dollar bill for the birthday girl and a 10 dollar bill for a cause of her choice. She chose to give the money to me so I can spend it at the naturopath. Are you crying yet??
I've been sent more cards, letters and books than I know what to do with. There's been countless offers to babysit and just recently another offer to use a friend's cabin for some down time. Someone's also just sent me a subscription to People Magazine and no one's owned up to it! WHO ARE YOU?? I love it! I love a magazine that I can actually complete the crossword puzzle in pen :) And just yesterday I got the greatest package sent to me from work. Inside were gift certificates, more than 200 donated personal assistant points, a beautiful card, and then a link to a 10 minute video they put together for me full of well wishes. They were from my fellow recruiters, team members I had hired, managers I've worked with, and all of them friends. I had to watch it more than once because I bawled through it the first time (happy tears I promise!) Liking your job and loving the people you work with is like winning the lottery. Who knew cancer could make a girl feel so lucky??
People keep telling me I'm handling this so well. That they love my positivity and strength and so on and so on. But listen here people, it's all because of you! Look at the kind of people I'm surrounded with. It's like the "It's not you, it's me" cliche in reverse. I had myself a nice little Sunday Funday on the Joe Fortes patio this weekend with my best girl friends (Dave, that includes you!) and Lord, did I feel lucky. I live a really good life. There's been some bad times these past few months, but hey, I've been through worse. Not everyone gets a fighting chance. Not everyone is surrounded by the best family, friends and colleagues there are to find. Every time I'm at the cancer agency there are people who are all alone. People without rides, and no one to sit with them. And I know there are people who abandon, or worse yet mistreat people they know with cancer. I can't even fathom a scenario like that because of all of you. You have all been a part of my fight. Please accept my sincerest thanks.
With much love,
Ashlyn
Monday, 22 August 2011
Not Just a River in Egypt
Happy Chemo Day!
Today will be treatment #7. Chemo days don't make me anxious anymore. In fact, today I'm looking forward to the nap I'm going to get. That's about all I'm looking forward to though. I was not amongst the happy 50% of people that Gabapentin works for. The joint and bone pain wasn't any worse in severity, just more constant and lasted a full week. I know what I'm in for, and I'm not looking forward to it.
I'll just go ahead and tell you that it's depressing to be in pain for that length of time. By day three of no help from the drugs I was a sorry sap of a human being. I finally felt like I was a sick person. It's a hard feeling to avoid when you're too exhausted to do anything about your appearance and you keep catching glimpses of yourself in mirrors around the house. There were a lot of, "How is this my life?!?!" moments that week. So one night I finally admitted to Corey that I felt like a cancer patient. "Oh honey, no you're not". Uh, ya actually, I am. That was the worst I've felt in a long time. I sat in bed and had a good long cry about it.
Don't worry, I got over myself pretty quickly. Any woman reading this knows how cathartic a good cry can be. Actually one time I felt my friend Susan needed a good cry, but I knew she just wasn't a cry to her friends kind of girl. I also knew she'd never seen Steel Magnolias. So I recommended it as a good chick flick and giggled to myself all night just knowing that it would get her to bawl her little head off. Wow, that sounds cruel doesn't it?? Don't start yelling at me, she loved it! I actually called her halfway through the movie and she answered the phone, "What is WRONG with you???? This is the worst movie EVER!" I couldn't help myself, I was laughing so hard, "But you love it right?" Ya she did. Best cry she'd had in a good long time. You see, Steel Magnolias is to women what Rudy is to men. If you don't tear up when Sally Field has her breakdown post funeral or when Rudy finally rushes out onto the field then I'm pretty sure there's something wrong with you. But I digress.
That little anecdote was just to remind you not to feel sorry for me for having a bad night. I needed it. I needed to get good and emotionally exhausted so I could finally have a solid night's sleep. And I suppose I also needed to come out of the denial phase of this journey. I do have cancer. That nagging little feeling I had that kept telling me I wasn't taking this seriously enough? It knew I was still at least partially in denial and that needed to change.
How could I be this far into my treatment and still be in denial, you ask? Well, the thing about "active chemotherapy" is that it can be a very passive experience. You just sit there and take it. You curl up and take the nausea. You do whatever you can to handle the pain. Plus the doctor's orders to not overdo it on anything diet wise lulled me into this place where I didn't feel like cancer had really changed my life all that much. But I know that it needs to.
I learned a long time ago that denial serves a very real purpose. When you're world gets turned upside down, first shock, then denial that anything has changed, allows you to put one foot in front of the other and keep going. So thanks Denial, it's been a slice, but I'm ready to move on. I'm ready to accept that my life has been forever changed and that I need to make some changes because of that. It's good timing really. With chemo ending soon, I can start making plans. I like making plans. I may not like the plan, but I like making it. I've got about a month before I head to the naturopath. That's probably how long it's going to take me to figure out how I'm going to make adding kale to my smoothies taste good...
Time to head to chemo. Seven down, one to go!
Much love,
Ashlyn
Today will be treatment #7. Chemo days don't make me anxious anymore. In fact, today I'm looking forward to the nap I'm going to get. That's about all I'm looking forward to though. I was not amongst the happy 50% of people that Gabapentin works for. The joint and bone pain wasn't any worse in severity, just more constant and lasted a full week. I know what I'm in for, and I'm not looking forward to it.
I'll just go ahead and tell you that it's depressing to be in pain for that length of time. By day three of no help from the drugs I was a sorry sap of a human being. I finally felt like I was a sick person. It's a hard feeling to avoid when you're too exhausted to do anything about your appearance and you keep catching glimpses of yourself in mirrors around the house. There were a lot of, "How is this my life?!?!" moments that week. So one night I finally admitted to Corey that I felt like a cancer patient. "Oh honey, no you're not". Uh, ya actually, I am. That was the worst I've felt in a long time. I sat in bed and had a good long cry about it.
Don't worry, I got over myself pretty quickly. Any woman reading this knows how cathartic a good cry can be. Actually one time I felt my friend Susan needed a good cry, but I knew she just wasn't a cry to her friends kind of girl. I also knew she'd never seen Steel Magnolias. So I recommended it as a good chick flick and giggled to myself all night just knowing that it would get her to bawl her little head off. Wow, that sounds cruel doesn't it?? Don't start yelling at me, she loved it! I actually called her halfway through the movie and she answered the phone, "What is WRONG with you???? This is the worst movie EVER!" I couldn't help myself, I was laughing so hard, "But you love it right?" Ya she did. Best cry she'd had in a good long time. You see, Steel Magnolias is to women what Rudy is to men. If you don't tear up when Sally Field has her breakdown post funeral or when Rudy finally rushes out onto the field then I'm pretty sure there's something wrong with you. But I digress.
That little anecdote was just to remind you not to feel sorry for me for having a bad night. I needed it. I needed to get good and emotionally exhausted so I could finally have a solid night's sleep. And I suppose I also needed to come out of the denial phase of this journey. I do have cancer. That nagging little feeling I had that kept telling me I wasn't taking this seriously enough? It knew I was still at least partially in denial and that needed to change.
How could I be this far into my treatment and still be in denial, you ask? Well, the thing about "active chemotherapy" is that it can be a very passive experience. You just sit there and take it. You curl up and take the nausea. You do whatever you can to handle the pain. Plus the doctor's orders to not overdo it on anything diet wise lulled me into this place where I didn't feel like cancer had really changed my life all that much. But I know that it needs to.
I learned a long time ago that denial serves a very real purpose. When you're world gets turned upside down, first shock, then denial that anything has changed, allows you to put one foot in front of the other and keep going. So thanks Denial, it's been a slice, but I'm ready to move on. I'm ready to accept that my life has been forever changed and that I need to make some changes because of that. It's good timing really. With chemo ending soon, I can start making plans. I like making plans. I may not like the plan, but I like making it. I've got about a month before I head to the naturopath. That's probably how long it's going to take me to figure out how I'm going to make adding kale to my smoothies taste good...
Time to head to chemo. Seven down, one to go!
Much love,
Ashlyn
Tuesday, 9 August 2011
The Taxol Effect
6 down, 2 to go!
Yesterday was chemo day. It was the second treatment of the Paclitaxol. It was also Lyla's first birthday. Talk about not exactly what I wanted to be doing yesterday. I'm always the youngest person I see in the chemo wing of the BCCA - although I happen to personally know someone else my age and someone even younger both going through this as well. I wonder if they get the pity stares as well. The pity stares force me to act almost bubbly in the chemo unit. Like I need to demonstrate to these people, hey don't worry about me, I'm fine! Most of the time I am fine. Like I said at the beginning, I've put a lot of faith in that chemo is what works best against my particular kind of cancer. So although I don't necessarily love going, I do feel like I take it in stride... needle-poking, pity stares and all. The only time the stares get to me is when other patients hear that I have a young child at home. They somehow think that it makes me even more pitiable. Honestly, nothing could be further from the truth. I don't know how anyone else goes through this without a baby at home. I'm just going to go ahead and be a braggy mom here, but my baby is the best! She's so deliciously cute, is almost always happy, doesn't make strange around new people and is a constant source of laughter for me being the total goof ball that she is. Because of her I don't have the time or the cause to feel sorry for myself. She's my therapy and support group all-in-one. Well, she better be, because she's also the reason I don't have time to go to any of those things, not to mention blogging...
But back to yesterday. I got the biggest pity look of all from my nurse when I told her it was my daughter's birthday. And for the first time I just went ahead and joined her and gave myself a moment to feel good and sorry for myself. Her training kicked in mighty quick though and got me talking about the good stuff, so thankfully my Debbie Downer moment didn't last too long.
So on to the latest news in Ashlyn's cancer journey. The first round of Taxol started off really well. Awesome actually. The main worry about this stuff is having an allergic reaction to it. So before they get started with the chemo, they give me a whopping dose of Dexamethazone (steroids) and then an even bigger dose of Benadryl by IV drip. Thanks to the Benadryl I slept through the entire treatment. All 4 hours of it. That was the best nap I've had in YEARS! Corey kept having to readjust my head because I was so out it and slack jawed that I was snoring up a storm for the rest of the chemo patients to hear. I was way too groggy to feel embarrassed about it when I woke up, so score 1 for the Taxol treatments, this was going to be a cake walk.
Day 2 was great. It was such a relief not to have any nausea. I had been getting really good at recognizing the early signs of nausea from the first four treatments, and got it front of it as they say, but it was awesome not to have to be taking a bunch of pills all day long. Day 3 started off much the same, and summer had finally showed up in Vancouver so I was pretty much in the best mood ever. Chemo-schmemo. I laugh in the face of chemo. Muah ha ha ha. Then having written off the chemo effects in my life, at dinner I legitimately couldn't figure out why it felt like I'd run a marathon. What was up with these shin splints? And why are my knees on FIRE???
Dear chemo gods,
I TAKE IT BACK!! I TAKE IT ALL BACK! I wasn't laughing AT you, I was laughing WITH you. K???
Be nice please. Did I mention I have a baby girl at home? (ya that's right, I'm now using my daughter to induce pity from the heathen chemo gods)
Respectfully yours,
Ashlyn
Well, just like most of my letters to cancer, this one fell on deaf ears. I wanted to avoid ever getting too preachy about getting everyone to start living healthier, (for example, eat your greens or you WILL get cancer!!) but I've just had a sneak peak of some serious arthritis and osteoporosis pain. So start taking your calcium people, because honestly that pain is the WORST! My knees took the brunt of the constant intense aches and it felt like the worst shin splints I've ever had. It was like a non-stop game of roulette with the rest off my bones and joints. Spin the wheel, bang! Intense wrist pain. Bang! There goes my toes. Ankles, Hips. Knees, knees, knees, knees, knees. I couldn't get more than an hour of sleep with these intense bone attacks. When the Aleve didn't work, it was off to my narc drawer. Tylenol 3's didn't come close to helping. One oxycodone, nope. Two oxycodone? Still nothing. Two oxycodone plus an oxycontin? Well, at least I fell asleep with that cocktail, but 2 hours later, nope! This went on from Wednesday night through Saturday. By Sunday I was better but seriously considering asking to go back to the first kind of chemo. I'll take the nausea over this.
I had my check up last Thursday and the shrinking has started again, not as drastic as the first round, but some shrinkage nonetheless. Now we're dealing with a mass of about 4.3cmx3.2cm. So there will be no going back to the first stuff. Instead my doc has prescribed something called Gabapentin to take preventatively that helps with the pain in about 50% of chemo patients. I guess I'll just have to take those odds.
So fingers crossed for me please on this one. If the new meds work, I can sail through this, then it's only 2 left and I have an entire month break before I have to have surgery. I can see the light at the end of my chemo tunnel. Thanks again to everyone who have been seeing me through this.
As always, much love,
Ashlyn
Yesterday was chemo day. It was the second treatment of the Paclitaxol. It was also Lyla's first birthday. Talk about not exactly what I wanted to be doing yesterday. I'm always the youngest person I see in the chemo wing of the BCCA - although I happen to personally know someone else my age and someone even younger both going through this as well. I wonder if they get the pity stares as well. The pity stares force me to act almost bubbly in the chemo unit. Like I need to demonstrate to these people, hey don't worry about me, I'm fine! Most of the time I am fine. Like I said at the beginning, I've put a lot of faith in that chemo is what works best against my particular kind of cancer. So although I don't necessarily love going, I do feel like I take it in stride... needle-poking, pity stares and all. The only time the stares get to me is when other patients hear that I have a young child at home. They somehow think that it makes me even more pitiable. Honestly, nothing could be further from the truth. I don't know how anyone else goes through this without a baby at home. I'm just going to go ahead and be a braggy mom here, but my baby is the best! She's so deliciously cute, is almost always happy, doesn't make strange around new people and is a constant source of laughter for me being the total goof ball that she is. Because of her I don't have the time or the cause to feel sorry for myself. She's my therapy and support group all-in-one. Well, she better be, because she's also the reason I don't have time to go to any of those things, not to mention blogging...
But back to yesterday. I got the biggest pity look of all from my nurse when I told her it was my daughter's birthday. And for the first time I just went ahead and joined her and gave myself a moment to feel good and sorry for myself. Her training kicked in mighty quick though and got me talking about the good stuff, so thankfully my Debbie Downer moment didn't last too long.
So on to the latest news in Ashlyn's cancer journey. The first round of Taxol started off really well. Awesome actually. The main worry about this stuff is having an allergic reaction to it. So before they get started with the chemo, they give me a whopping dose of Dexamethazone (steroids) and then an even bigger dose of Benadryl by IV drip. Thanks to the Benadryl I slept through the entire treatment. All 4 hours of it. That was the best nap I've had in YEARS! Corey kept having to readjust my head because I was so out it and slack jawed that I was snoring up a storm for the rest of the chemo patients to hear. I was way too groggy to feel embarrassed about it when I woke up, so score 1 for the Taxol treatments, this was going to be a cake walk.
Day 2 was great. It was such a relief not to have any nausea. I had been getting really good at recognizing the early signs of nausea from the first four treatments, and got it front of it as they say, but it was awesome not to have to be taking a bunch of pills all day long. Day 3 started off much the same, and summer had finally showed up in Vancouver so I was pretty much in the best mood ever. Chemo-schmemo. I laugh in the face of chemo. Muah ha ha ha. Then having written off the chemo effects in my life, at dinner I legitimately couldn't figure out why it felt like I'd run a marathon. What was up with these shin splints? And why are my knees on FIRE???
Dear chemo gods,
I TAKE IT BACK!! I TAKE IT ALL BACK! I wasn't laughing AT you, I was laughing WITH you. K???
Be nice please. Did I mention I have a baby girl at home? (ya that's right, I'm now using my daughter to induce pity from the heathen chemo gods)
Respectfully yours,
Ashlyn
Well, just like most of my letters to cancer, this one fell on deaf ears. I wanted to avoid ever getting too preachy about getting everyone to start living healthier, (for example, eat your greens or you WILL get cancer!!) but I've just had a sneak peak of some serious arthritis and osteoporosis pain. So start taking your calcium people, because honestly that pain is the WORST! My knees took the brunt of the constant intense aches and it felt like the worst shin splints I've ever had. It was like a non-stop game of roulette with the rest off my bones and joints. Spin the wheel, bang! Intense wrist pain. Bang! There goes my toes. Ankles, Hips. Knees, knees, knees, knees, knees. I couldn't get more than an hour of sleep with these intense bone attacks. When the Aleve didn't work, it was off to my narc drawer. Tylenol 3's didn't come close to helping. One oxycodone, nope. Two oxycodone? Still nothing. Two oxycodone plus an oxycontin? Well, at least I fell asleep with that cocktail, but 2 hours later, nope! This went on from Wednesday night through Saturday. By Sunday I was better but seriously considering asking to go back to the first kind of chemo. I'll take the nausea over this.
I had my check up last Thursday and the shrinking has started again, not as drastic as the first round, but some shrinkage nonetheless. Now we're dealing with a mass of about 4.3cmx3.2cm. So there will be no going back to the first stuff. Instead my doc has prescribed something called Gabapentin to take preventatively that helps with the pain in about 50% of chemo patients. I guess I'll just have to take those odds.
So fingers crossed for me please on this one. If the new meds work, I can sail through this, then it's only 2 left and I have an entire month break before I have to have surgery. I can see the light at the end of my chemo tunnel. Thanks again to everyone who have been seeing me through this.
As always, much love,
Ashlyn
Tuesday, 26 July 2011
Just Keep Swimming
5 down, 3 to go. Lord does it feel good to be on the back 9.
It seems like forever since my last post. A lot has happened in the last 2 weeks, some great, some not so great. Let's start off with the great, shall we? I'm still amazed at how many people are reaching out to me. Every week I'm getting cards in the mail and friends are dropping off books and bath salts. One of our closest friend's mom even invited us up to her cabin for the weekend because she knew we needed a break. It was so thoughtful to offer us a chance to get out of the city. We spent the weekend in the most idyllic setting. This cabin isn't so much a cabin as it is a 4 bedroom house right on a lake. And it's not exactly roughing it when you're traveling with 2 honest to goodness Chefs. Also, our friend's older daughters were with us so we had live in babysitters for Lyla all weekend long. I can honestly say it was the first time I've felt really relaxed since all of this started. I treated myself to some wine and had good long chats with one of my closest girlfriends, hung out in the sun with all the kids, sat in the shade and read my book. It was such a nice break to be outside of the walls that more and more remind me of being sick.
The timing couldn't have been more perfect. I'd had a rough week news-wise at the cancer agency. First it started with my consultation with my radiation oncologist. He was a perfectly nice man, spent a generous amount of time with me, and answered all of my questions. He was also dire. There's no other way to describe it. It felt like such a long time since I'd met a new doctor who was reviewing my file for the first time. There were too many sad looks, too many sympathetic nods. At one point when we were going over all the side effects he told me that although some are potentially quite serious (another cancer for example) that in my case I simply didn't have a choice. Radiation is "necessary for my survival" were his exact words.
Now I'm not sure if this falls into "Am I not taking this seriously enough?" category, but the term "survival" seemed a bit drastic to me. Was that in question?? And by the way, I didn't need the hard sell. I know there are a lot of people who, for very different reasons, refuse treatments. I'm not one of them. Can someone please update my chart with "Patient believes in modern medicine - no need for scare tactics"?!?! I was still busy absorbing this sentence when we got to the physical exam. More serious eyes and nods. He honed in right on the thing that still worries me the most and reminded me that we're still dealing with something over 5cm and that we're halfway through chemo. So he tells me that he's ordering not 4 weeks of radiation, but 6 and a half weeks instead. That's all the way through December...
Dear Cancer,
Apparently you don't respond well to polite letters. F.U. then.
Ashlyn
So needless to say, I was already bummed out when I went back to my medical oncologist the very next day for my regularly scheduled check up. He brought out his fancy measuring device and there was no more shrinkage. He reassured me that's why it was already planned to switch things up. Often times people can plateau on one kind of chemo or another. Ok fine. But could I please plateau with maybe just 1 cm left, not 5?
Don't get me wrong. I know no one's handed me a death sentence or anything. And like I keep telling myself, things could be a lot worse. But I have to say, I was getting used to the good news. I handled the first four rounds of chemo like a champ. I was, and still am, encouraged by how much progress we'd made. Then suddenly, I'm right back at the beginning. Back in the office of a doctor that doesn't know me, and hearing all the information of my case that reminds me that my diagnosis was serious - serious as cancer.
So off I went for my first round of the new cocktail today, feeling nervous yet resigned. The only other woman in the room with me still had all her hair and her shiny new folder stuffed with dozens of pamphlets. It instantly reminded me of that moment you get at work after being in a new job for a while. That conference call when all of a sudden you realize that the balance of experience has shifted. I love it when I go from being the person with all of the questions to the person who can answer them. I looked at this woman who, to her credit, looked like she was taking this all in stride, and felt like saying, "Ask away". Instead I just smiled and wished her luck when she left. She was alone in the room and I didn't want to run the risk of upsetting her. And then, once again, I felt so lucky to have Corey with me. I've felt a lot of things during the last few months. Alone isn't one of them.
So thanks again to everyone for coming on this ride with me. It makes it a lot easier to fight the lows and the bad news when I know I've got so many people in my corner.It's because of all this support that I find the energy to swim upstream. I'm feeling hopeful about the new plateau fighting chemo I've just started. I'll be sure to let you all know how it goes.
Much love,
Ashlyn
It seems like forever since my last post. A lot has happened in the last 2 weeks, some great, some not so great. Let's start off with the great, shall we? I'm still amazed at how many people are reaching out to me. Every week I'm getting cards in the mail and friends are dropping off books and bath salts. One of our closest friend's mom even invited us up to her cabin for the weekend because she knew we needed a break. It was so thoughtful to offer us a chance to get out of the city. We spent the weekend in the most idyllic setting. This cabin isn't so much a cabin as it is a 4 bedroom house right on a lake. And it's not exactly roughing it when you're traveling with 2 honest to goodness Chefs. Also, our friend's older daughters were with us so we had live in babysitters for Lyla all weekend long. I can honestly say it was the first time I've felt really relaxed since all of this started. I treated myself to some wine and had good long chats with one of my closest girlfriends, hung out in the sun with all the kids, sat in the shade and read my book. It was such a nice break to be outside of the walls that more and more remind me of being sick.
The timing couldn't have been more perfect. I'd had a rough week news-wise at the cancer agency. First it started with my consultation with my radiation oncologist. He was a perfectly nice man, spent a generous amount of time with me, and answered all of my questions. He was also dire. There's no other way to describe it. It felt like such a long time since I'd met a new doctor who was reviewing my file for the first time. There were too many sad looks, too many sympathetic nods. At one point when we were going over all the side effects he told me that although some are potentially quite serious (another cancer for example) that in my case I simply didn't have a choice. Radiation is "necessary for my survival" were his exact words.
Now I'm not sure if this falls into "Am I not taking this seriously enough?" category, but the term "survival" seemed a bit drastic to me. Was that in question?? And by the way, I didn't need the hard sell. I know there are a lot of people who, for very different reasons, refuse treatments. I'm not one of them. Can someone please update my chart with "Patient believes in modern medicine - no need for scare tactics"?!?! I was still busy absorbing this sentence when we got to the physical exam. More serious eyes and nods. He honed in right on the thing that still worries me the most and reminded me that we're still dealing with something over 5cm and that we're halfway through chemo. So he tells me that he's ordering not 4 weeks of radiation, but 6 and a half weeks instead. That's all the way through December...
Dear Cancer,
Apparently you don't respond well to polite letters. F.U. then.
Ashlyn
So needless to say, I was already bummed out when I went back to my medical oncologist the very next day for my regularly scheduled check up. He brought out his fancy measuring device and there was no more shrinkage. He reassured me that's why it was already planned to switch things up. Often times people can plateau on one kind of chemo or another. Ok fine. But could I please plateau with maybe just 1 cm left, not 5?
Don't get me wrong. I know no one's handed me a death sentence or anything. And like I keep telling myself, things could be a lot worse. But I have to say, I was getting used to the good news. I handled the first four rounds of chemo like a champ. I was, and still am, encouraged by how much progress we'd made. Then suddenly, I'm right back at the beginning. Back in the office of a doctor that doesn't know me, and hearing all the information of my case that reminds me that my diagnosis was serious - serious as cancer.
So off I went for my first round of the new cocktail today, feeling nervous yet resigned. The only other woman in the room with me still had all her hair and her shiny new folder stuffed with dozens of pamphlets. It instantly reminded me of that moment you get at work after being in a new job for a while. That conference call when all of a sudden you realize that the balance of experience has shifted. I love it when I go from being the person with all of the questions to the person who can answer them. I looked at this woman who, to her credit, looked like she was taking this all in stride, and felt like saying, "Ask away". Instead I just smiled and wished her luck when she left. She was alone in the room and I didn't want to run the risk of upsetting her. And then, once again, I felt so lucky to have Corey with me. I've felt a lot of things during the last few months. Alone isn't one of them.
So thanks again to everyone for coming on this ride with me. It makes it a lot easier to fight the lows and the bad news when I know I've got so many people in my corner.It's because of all this support that I find the energy to swim upstream. I'm feeling hopeful about the new plateau fighting chemo I've just started. I'll be sure to let you all know how it goes.
Much love,
Ashlyn
Monday, 11 July 2011
Twas The Night Before Chemo
I never sleep well before Chemo Day. So instead of lying in bed and tossing and turning I thought I would just get up and write about all of the things keeping me awake.
When I was diagnosed I had to compartmentalize in a big way. The things I couldn't deal with at the time got locked away. Today one of the biggest things got unlocked. I spent the day with some of my favourite girl friends. All of them started as work friends but they've all become forever friends. Two of them are in town from Toronto so I hadn't seen them since I started treatment. There's something so comforting about friends that you can just slip into a conversation with like they've never left. They're the people who don't look at you any different because you're sick and you can still get to the important stuff - like admiring Michaela's new purse - out of the way before getting to the cancer talk. To them, I'm still Ash, not Cancer Girl.
We had a great lunch at Sandbar over some great girl talk. At one point in the conversation we start talking about the big C and I mentioned that one of the hardest things I had to face was telling my best friends. Susan, who was there, retold the story of how I told her and our other BFF Alyssa. We were all a crying mess that day and then found ourselves at Cactus Club ordering wine. See? I told you, with good friends, some things not even cancer can change. Anyhow, like I said, telling those two girls was unspeakably hard. I had so much anxiety over it. There was still so much I was unsure of. I was terrified and at the same time didn't want to worry anyone. I was so stressed that I wasn't eating or sleeping. So I compartmentalized. When they asked what they could do to help I asked them to tell the rest of our friends. It was too much for me and I just couldn't go through it over and over again. With that off my plate, I locked away all those worries away and let them deal with it.
I knew it was a lot to ask, but it wasn't until today that I really appreciated it. After Susan retold our story, Michaela talked about having to hear it from Susan. And then how Tiff had to hear it from Michaela. And how everyone cried. Why was I surprised to hear that? It's bad news. Of course my friends were going to be upset. But it genuinely did shock me. And then I realized just how good of a job I'd done at locking those thoughts away. Everything I couldn't bare to put myself through, my friends had to go through anyways. I spent the rest of my afternoon sort of baffled at the realization of just how many people are being affected by this. Don't get me wrong, it's so nice to know that people care, but it's also so hard to know that you are the cause of their worry.
What else have I not been considering? When I started this blog I made the decision to stay positive, update my loved ones here when I had some spare time, and the rest of my focus was going to Lyla. She has been the best distraction for me. There are days where I'm so busy with her that I don't give cancer a second thought. I'm now wondering if that was the right thing to do. Is staying positive enough? Is distracting myself the same thing as ignoring the problem? I've done a little research on diet and complimentary therapies, but I know I've barely scratched the surface. Am I taking this seriously enough? I know I'm just supposed to sit tight and let the chemo do its thing for now, but shouldn't I be doing more?? I know that cancer has changed my life forever. But what have I changed? To be honest, not much.
And now that those floodgates have opened, I find I'm right back in those early days again where I'm frightened and not sure exactly what to do about it. I had my check up on Friday and even though this thing has shrunk to 4.5cm x 5.5cm (that's half!), all I'm thinking about at this very moment, is "shit, that's still huge". This thing started off HUGE. And here I am, all of a sudden actually looking forward to tomorrow's chemo session.
Why does to the urge to spring into action have to come after midnight?? I actually can't help but laugh at myself right now. I don't know how many times I've said "Diet starts on Monday", but this time I swear I mean it! See ya later sugar. Beating cancer is a way better motivator than wanting to squeeze into an old pair of jeans, so I'm feeling pretty good about getting things started tomorrow. And yoga too! I'm starting yoga (again). Hold me to it people. Peer pressure me on facebook. I thrive on encouragement. You've all asked how you can help. That's how. Bring on the healthy living advice!
And to the first people who asked how they could help, let me take this moment to thank you. Thank you so much to my girls who were given the job of having to spread this crappy news. Thank you so much to all my friends that didn't take it personally when I just couldn't deal with calling you all personally to deliver this crappy news. And thank you so much to everyone who continues to understand that it takes me forever to return a phone call or email.
Ah. I already feel better having that off my chest and a rough plan in place. I know that No Sugar/Do Yoga may not seem like much, but hey it's a start. Wish me luck.
Much love,
Ashlyn
When I was diagnosed I had to compartmentalize in a big way. The things I couldn't deal with at the time got locked away. Today one of the biggest things got unlocked. I spent the day with some of my favourite girl friends. All of them started as work friends but they've all become forever friends. Two of them are in town from Toronto so I hadn't seen them since I started treatment. There's something so comforting about friends that you can just slip into a conversation with like they've never left. They're the people who don't look at you any different because you're sick and you can still get to the important stuff - like admiring Michaela's new purse - out of the way before getting to the cancer talk. To them, I'm still Ash, not Cancer Girl.
We had a great lunch at Sandbar over some great girl talk. At one point in the conversation we start talking about the big C and I mentioned that one of the hardest things I had to face was telling my best friends. Susan, who was there, retold the story of how I told her and our other BFF Alyssa. We were all a crying mess that day and then found ourselves at Cactus Club ordering wine. See? I told you, with good friends, some things not even cancer can change. Anyhow, like I said, telling those two girls was unspeakably hard. I had so much anxiety over it. There was still so much I was unsure of. I was terrified and at the same time didn't want to worry anyone. I was so stressed that I wasn't eating or sleeping. So I compartmentalized. When they asked what they could do to help I asked them to tell the rest of our friends. It was too much for me and I just couldn't go through it over and over again. With that off my plate, I locked away all those worries away and let them deal with it.
I knew it was a lot to ask, but it wasn't until today that I really appreciated it. After Susan retold our story, Michaela talked about having to hear it from Susan. And then how Tiff had to hear it from Michaela. And how everyone cried. Why was I surprised to hear that? It's bad news. Of course my friends were going to be upset. But it genuinely did shock me. And then I realized just how good of a job I'd done at locking those thoughts away. Everything I couldn't bare to put myself through, my friends had to go through anyways. I spent the rest of my afternoon sort of baffled at the realization of just how many people are being affected by this. Don't get me wrong, it's so nice to know that people care, but it's also so hard to know that you are the cause of their worry.
What else have I not been considering? When I started this blog I made the decision to stay positive, update my loved ones here when I had some spare time, and the rest of my focus was going to Lyla. She has been the best distraction for me. There are days where I'm so busy with her that I don't give cancer a second thought. I'm now wondering if that was the right thing to do. Is staying positive enough? Is distracting myself the same thing as ignoring the problem? I've done a little research on diet and complimentary therapies, but I know I've barely scratched the surface. Am I taking this seriously enough? I know I'm just supposed to sit tight and let the chemo do its thing for now, but shouldn't I be doing more?? I know that cancer has changed my life forever. But what have I changed? To be honest, not much.
And now that those floodgates have opened, I find I'm right back in those early days again where I'm frightened and not sure exactly what to do about it. I had my check up on Friday and even though this thing has shrunk to 4.5cm x 5.5cm (that's half!), all I'm thinking about at this very moment, is "shit, that's still huge". This thing started off HUGE. And here I am, all of a sudden actually looking forward to tomorrow's chemo session.
Why does to the urge to spring into action have to come after midnight?? I actually can't help but laugh at myself right now. I don't know how many times I've said "Diet starts on Monday", but this time I swear I mean it! See ya later sugar. Beating cancer is a way better motivator than wanting to squeeze into an old pair of jeans, so I'm feeling pretty good about getting things started tomorrow. And yoga too! I'm starting yoga (again). Hold me to it people. Peer pressure me on facebook. I thrive on encouragement. You've all asked how you can help. That's how. Bring on the healthy living advice!
And to the first people who asked how they could help, let me take this moment to thank you. Thank you so much to my girls who were given the job of having to spread this crappy news. Thank you so much to all my friends that didn't take it personally when I just couldn't deal with calling you all personally to deliver this crappy news. And thank you so much to everyone who continues to understand that it takes me forever to return a phone call or email.
Ah. I already feel better having that off my chest and a rough plan in place. I know that No Sugar/Do Yoga may not seem like much, but hey it's a start. Wish me luck.
Much love,
Ashlyn
Friday, 1 July 2011
No Strongbow, eh?
Happy Canada Day! Wouldn't it be nice if I could start every blog with a "Happy Somethingorother"? We'll see...
Well I've made it to the end of the week of round 3 and, again, it wasn't so totally heinous. The anti-nausea pills seems to work really well for me so I'm grateful for that. I've had lots of help from friends and family this week too, which made managing the days with Lyla much easier. And I no longer think twice about taking the sleeping pills during chemo week. The steroids they put me on make my body too hyper to sleep otherwise. It's a strange feeling wanting to curl up under the fog of nausea pills but not be able to stop flailing your arms and legs in bed. Corey must feel like he's sleeping next to a spastic chicken by now. With the weekend here now though, I can tell things are settling down. Or maybe I'm just getting the hang of this chemo business. Either way, I'm happy to say today is a good day.
My big complaint (and why have a blog if you can't complain on it, right??) is about food. My taste buds have gone all wonky. I thought maybe there was something wrong with my appetite. Turns out, not so much. The problem is nothing tastes right! Sourdough toast (which was my pregnancy life saver) tastes like cardboard. My tea tastes extra bitter. Even cheese is off. Oh dairy! Is this the end of our love affair? The cancer agency told me not to eat my favourite foods because I'd start to associate them with chemo. Ummmm, that's a problem because I. Love. Food. Period. We're about to head out to the Village Taphouse in Park Royal for lunch and I'm already stressing because I don't know what food I'm about to ruin for myself forever. And whatever food that is I'd like to wash it down with a Strongbow. But I can't. I can't run the risk of tainting my favourite drink on top of this all. Hmmm I feel another letter coming on...
Dear Strongbow,
You've most likely noticed an unexplained decrease in sales in the North Burnaby area in recent months. Please accept my appologies. It's just for a little while. We've been through these tough times before when I was waiting on Lyla. You know I'll be back. Not even cancer can keep us apart for too long. In the meantime, please start being sold in Hawaii so I can enjoy you there on my family trip in the New Year.
Cheers,
Ashlyn
I suppose I should just count my blessings. A little food aversion isn't the end of the world. And it's not as though I'll give up. You know I'll find something to eat. Most likely potatoes. Mmmmm potatoes. Ya that should do it.
Much love,
Ashlyn
Well I've made it to the end of the week of round 3 and, again, it wasn't so totally heinous. The anti-nausea pills seems to work really well for me so I'm grateful for that. I've had lots of help from friends and family this week too, which made managing the days with Lyla much easier. And I no longer think twice about taking the sleeping pills during chemo week. The steroids they put me on make my body too hyper to sleep otherwise. It's a strange feeling wanting to curl up under the fog of nausea pills but not be able to stop flailing your arms and legs in bed. Corey must feel like he's sleeping next to a spastic chicken by now. With the weekend here now though, I can tell things are settling down. Or maybe I'm just getting the hang of this chemo business. Either way, I'm happy to say today is a good day.
My big complaint (and why have a blog if you can't complain on it, right??) is about food. My taste buds have gone all wonky. I thought maybe there was something wrong with my appetite. Turns out, not so much. The problem is nothing tastes right! Sourdough toast (which was my pregnancy life saver) tastes like cardboard. My tea tastes extra bitter. Even cheese is off. Oh dairy! Is this the end of our love affair? The cancer agency told me not to eat my favourite foods because I'd start to associate them with chemo. Ummmm, that's a problem because I. Love. Food. Period. We're about to head out to the Village Taphouse in Park Royal for lunch and I'm already stressing because I don't know what food I'm about to ruin for myself forever. And whatever food that is I'd like to wash it down with a Strongbow. But I can't. I can't run the risk of tainting my favourite drink on top of this all. Hmmm I feel another letter coming on...
Dear Strongbow,
You've most likely noticed an unexplained decrease in sales in the North Burnaby area in recent months. Please accept my appologies. It's just for a little while. We've been through these tough times before when I was waiting on Lyla. You know I'll be back. Not even cancer can keep us apart for too long. In the meantime, please start being sold in Hawaii so I can enjoy you there on my family trip in the New Year.
Cheers,
Ashlyn
I suppose I should just count my blessings. A little food aversion isn't the end of the world. And it's not as though I'll give up. You know I'll find something to eat. Most likely potatoes. Mmmmm potatoes. Ya that should do it.
Much love,
Ashlyn
Monday, 27 June 2011
Simple Plans
Happy Chemo Day!
Three down, five to go. I can't help but feel like I'm in for it this time. I know there's no point worrying about it but I'm past the point of thinking the side effects won't get to me. The metallic taste in my mouth has set up camp and my eye lashes are starting to go. I still have my nails though so I guess that's a bonus. Today's chemo was #3 out of 4 sessions where they give me two separate drugs. The first has to be manually administered by a nurse because it's so toxic that they need to be able to pull it out right away if there's any leakage out of my veins. Joy. That's the one I get nervous about. It doesn't help that it comes in these giant evil syringes full of red hate. The rest of the chemo is given through a regular IV drip and the whole appointment only lasts about an hour or so. My last four treatments will be with a different set of meds and I'll be stuck in the chair for up to 4 hours. Although it sucks either way I'm sort of glad there's only 4 of each. It somehow seems more manageable to break it up that way. So that's the plan. Every second Monday I'll be in chemo until the fall.
It all seemed so simple on my first visit to the BCCA. Chemo till September, then recover. Surgery and reconstruction, then recover. Radiation for a month, then recover. Done. I felt so good about the plan, that I didn't bother to ask my oncologist how he felt about my odds. However the further along I go, I realize that things aren't necessarily that easy. It's not just grin and bear it and then it's over. There's the assess. "Let's wait and see". I want a prognosis but they won't give me one. It's too soon to tell. "We'll have to assess you at a later date". I've realized that this is all because of the curve balls cancer can throw your way. Chemo may kill the cancer but it might also leave me infertile and in early menopause. It might also give me another cancer. Pardon?? Surgery and reconstruction can't necessarily be done together. But that's what they said to me on my first appointment! "Well, the radiation will burn and shrink the skin and that may change things". Sorry did you say burn? So, I guess I can give up on this dream of being done with this nonesense by the end of the year.
This is the part I'm struggling with. I'm a planner. I like a nice orderly world. I'm fully onboard with visualizing my life without cancer. I had been aiming for the New Year. I don't like being told, "Well, let's just see how it goes". Listen here doc. I have plans. I'm going to Hawaii in February with my entire family and I'd don't plan on stuffing my bikini with tissue paper so work with me here, OK? I pride myself on being a model patient, so now I just need things to go according to plan. Enough with the medical drama. I've accepted that I have cancer. All I want now is for my treatment to be uncomplicated. No curve balls please. When I was pregnant, I put in an order for a 7 hour delivery. It seemed reasonable. Lyla made it here in 6 hours and 45 minutes. Just sayin'. So...
Dear Cancer,
I have a family trip planned. I feel like I've given you plenty of attention and I'm being a good little patient so I'm putting in my order for an uncomplicated healing process. I'd like to be in remission by 2012. If you want to go ahead and bump up that time line as a Christmas present to me, I accept.
Love,
Ash
Keep your fingers crossed for me!
Much love,
Ashlyn
Three down, five to go. I can't help but feel like I'm in for it this time. I know there's no point worrying about it but I'm past the point of thinking the side effects won't get to me. The metallic taste in my mouth has set up camp and my eye lashes are starting to go. I still have my nails though so I guess that's a bonus. Today's chemo was #3 out of 4 sessions where they give me two separate drugs. The first has to be manually administered by a nurse because it's so toxic that they need to be able to pull it out right away if there's any leakage out of my veins. Joy. That's the one I get nervous about. It doesn't help that it comes in these giant evil syringes full of red hate. The rest of the chemo is given through a regular IV drip and the whole appointment only lasts about an hour or so. My last four treatments will be with a different set of meds and I'll be stuck in the chair for up to 4 hours. Although it sucks either way I'm sort of glad there's only 4 of each. It somehow seems more manageable to break it up that way. So that's the plan. Every second Monday I'll be in chemo until the fall.
It all seemed so simple on my first visit to the BCCA. Chemo till September, then recover. Surgery and reconstruction, then recover. Radiation for a month, then recover. Done. I felt so good about the plan, that I didn't bother to ask my oncologist how he felt about my odds. However the further along I go, I realize that things aren't necessarily that easy. It's not just grin and bear it and then it's over. There's the assess. "Let's wait and see". I want a prognosis but they won't give me one. It's too soon to tell. "We'll have to assess you at a later date". I've realized that this is all because of the curve balls cancer can throw your way. Chemo may kill the cancer but it might also leave me infertile and in early menopause. It might also give me another cancer. Pardon?? Surgery and reconstruction can't necessarily be done together. But that's what they said to me on my first appointment! "Well, the radiation will burn and shrink the skin and that may change things". Sorry did you say burn? So, I guess I can give up on this dream of being done with this nonesense by the end of the year.
This is the part I'm struggling with. I'm a planner. I like a nice orderly world. I'm fully onboard with visualizing my life without cancer. I had been aiming for the New Year. I don't like being told, "Well, let's just see how it goes". Listen here doc. I have plans. I'm going to Hawaii in February with my entire family and I'd don't plan on stuffing my bikini with tissue paper so work with me here, OK? I pride myself on being a model patient, so now I just need things to go according to plan. Enough with the medical drama. I've accepted that I have cancer. All I want now is for my treatment to be uncomplicated. No curve balls please. When I was pregnant, I put in an order for a 7 hour delivery. It seemed reasonable. Lyla made it here in 6 hours and 45 minutes. Just sayin'. So...
Dear Cancer,
I have a family trip planned. I feel like I've given you plenty of attention and I'm being a good little patient so I'm putting in my order for an uncomplicated healing process. I'd like to be in remission by 2012. If you want to go ahead and bump up that time line as a Christmas present to me, I accept.
Love,
Ash
Keep your fingers crossed for me!
Much love,
Ashlyn
Tuesday, 21 June 2011
Round Two: Blessedly Uneventful
Two down, six to go. I had my second round of chemo last Monday and I made it through the week relatively unscathed. I had a few hard nights of insomnia at the beginning but got that under control with some new drugs. The nausea wasn't nearly as bad this time either. As for the fatigue, it was totally manageable. Let's face it, I have a 10 month old at home, I'm tired all the time anyway.
The hardest time I've had this week was actually dealing with the anticipation. I kept waiting for things to get bad. And then when it was clear that I wasn't taking a turn for the worst, I started questioning that. "Does this mean it's not working?" When things were bad after the first round I would tell myself, "Ok, this is just for a little while. You feel like this because it's working. It's worth it." I know I should just probably just be thankful for having a good round and be done with it. But instead I'm feeling myself up everyday to see if I can notice any more changes. I can't. So I'm resigning myself to the fact that not every round of chemo will be dramatic, and that slow and steady may have to win this race.
In other news, my hair is just about gone. Corey shaved what was left of it with some clippers I had bought him for Christmas. He left the #2 guard on it so I still have a sparse and spiky layer all over my head. And what's left is red. I'm talking RED. Not auburn. RED. I'm a stubborn redhead after all. Who knew?? All three of my brothers are probably uttering, "I did". So now when I leave the house I've always got my wig on. The first few ventures out I was sure everyone could tell and spent all my time avoiding eye contact. After the weekend though, my sister-in-law trimmed the bangs and made a few other snips and now I feel MUCH better about it. Thanks again Jeannie! I don't know what I'd do without you...
Speaking of my family, they truly deserve the credit for keeping me sane. I don't have enough words to express my gratitude for all my parents' support and advice. My mum is a two time cancer survivor and even though this is her worst nightmare she has remained as positive as they come. As a doctor, my dad is on double duty. Firstly, listening to his only girl's fears as any dad would, and then secondly, having to act as a teacher to me and my brothers. I've spent most of my life bragging about my big brothers and how they'd protect me from anything. This has been no exception. And the word "sister-in-law" somehow diminishes my relationship with those women. They are my family in every way that matters, in-law, shminlaw. And of course there's my in-laws. Corey's sister, although I don't see her often, I know would come down here and sucker punch cancer in the face if she could. I'm pretty sure Corey's dad and his wife are on track to cure all cancer with the amount of positive vibes and love they are focusing my way. And lastly Corey's mom remains the most positive and inspirational example to me of how to handle this disease with grace and a sense of humour. With all this love I'm having a hard time staying a Debbie Downer...
I know it took me a while to get this post up. Mostly it was because I felt this round was uneventful. But the other reason was that I plain old didn't have anything positive to say. I thought about getting on here and having a good ol' fashioned rant, but decided I didn't want to give my wah-wah-wah attitude any more power. So I waited until the funk passed. Obviously it has passed. At the moment I'm feeling good. Blessed even. Thank you all again for the continued love and support. As you can see, it does get through to me.
Much love,
Ashlyn
The hardest time I've had this week was actually dealing with the anticipation. I kept waiting for things to get bad. And then when it was clear that I wasn't taking a turn for the worst, I started questioning that. "Does this mean it's not working?" When things were bad after the first round I would tell myself, "Ok, this is just for a little while. You feel like this because it's working. It's worth it." I know I should just probably just be thankful for having a good round and be done with it. But instead I'm feeling myself up everyday to see if I can notice any more changes. I can't. So I'm resigning myself to the fact that not every round of chemo will be dramatic, and that slow and steady may have to win this race.
In other news, my hair is just about gone. Corey shaved what was left of it with some clippers I had bought him for Christmas. He left the #2 guard on it so I still have a sparse and spiky layer all over my head. And what's left is red. I'm talking RED. Not auburn. RED. I'm a stubborn redhead after all. Who knew?? All three of my brothers are probably uttering, "I did". So now when I leave the house I've always got my wig on. The first few ventures out I was sure everyone could tell and spent all my time avoiding eye contact. After the weekend though, my sister-in-law trimmed the bangs and made a few other snips and now I feel MUCH better about it. Thanks again Jeannie! I don't know what I'd do without you...
Speaking of my family, they truly deserve the credit for keeping me sane. I don't have enough words to express my gratitude for all my parents' support and advice. My mum is a two time cancer survivor and even though this is her worst nightmare she has remained as positive as they come. As a doctor, my dad is on double duty. Firstly, listening to his only girl's fears as any dad would, and then secondly, having to act as a teacher to me and my brothers. I've spent most of my life bragging about my big brothers and how they'd protect me from anything. This has been no exception. And the word "sister-in-law" somehow diminishes my relationship with those women. They are my family in every way that matters, in-law, shminlaw. And of course there's my in-laws. Corey's sister, although I don't see her often, I know would come down here and sucker punch cancer in the face if she could. I'm pretty sure Corey's dad and his wife are on track to cure all cancer with the amount of positive vibes and love they are focusing my way. And lastly Corey's mom remains the most positive and inspirational example to me of how to handle this disease with grace and a sense of humour. With all this love I'm having a hard time staying a Debbie Downer...
I know it took me a while to get this post up. Mostly it was because I felt this round was uneventful. But the other reason was that I plain old didn't have anything positive to say. I thought about getting on here and having a good ol' fashioned rant, but decided I didn't want to give my wah-wah-wah attitude any more power. So I waited until the funk passed. Obviously it has passed. At the moment I'm feeling good. Blessed even. Thank you all again for the continued love and support. As you can see, it does get through to me.
Much love,
Ashlyn
Friday, 10 June 2011
Becoming Superhuman
"Auntie Ashlyn, what's wrong with your hair?", my nephew said to me yesterday.
"Do you mean, why did I cut it short and sorta look like your dad now?"
"YEAH!!! Why'd you do that??"
"Because I'm going to lose it all anyways buddy."
"Why?"
"Because that's how I'm going to become superhuman."
"Hey! I'm superhuman!! I'm getting my hair cut tomorrow and Auntie Jeannie's gonna give me chocolate!!"
Sounds like a plan my sweet nephew. Somebody better be waiting for me with chocolate when my hair falls out.
Well it looks like I won't have to wait too long for that chocolate... Since writing the above, it has started.
I was warming up Lyla's last bottle before bed and doing a little cleaning in the kitchen when I glanced down and noticed it. All over the kitchen floor were strands of my hair. It was strange at first because I'm used to seeing my really long hair all over the place. But this was my new short hair. I started looking around the apartment and it was everywhere. My hand bolted to my head and came back with 7 or 8 strands sticking in between my fingers. Then I did it again. And again. More and more hair each time. I couldn't help myself and started to cry.
BUT, the universe clearly didn't want me to be sad because I swear before the first tear hit my cheek Lapierre scored! GO CANUCKS GO!!! Even Lyla picked up on the excitement and started her weird little baby dancing. No one could ever cry watching Lyla's dance moves. No one. Meltdown successfully averted.
Back to the point... I saw my nephew yesterday because my savior of a sister-in-law was babysitting Lyla, yet again, for another "teaching session" at the Cancer Agency. The class: Stabbing Oneself With A Needle 101. Like a number of my 100 level courses, I should have skipped it. Here's how it went:
Nurse: "Ahhhhh, we don't actually have any of the needles you're going to be using here because they aren't government funded."
Me: "Uh ok, then what should we do here?"
Nurse: "Well I have this other practice needle with saline that's similar but I don't want to open it because it's our last one."
Me: "Alrighty then, what should we do here?"
Nurse: "Well when you open the box for your syringe at home there will be some written instructions.Read those."
Dear Cancer,
What a waste of my time. I can't believe I drove into Vancouver for this.You owe me $4.50 for the parking meter.
Love, Ash.
Now I should mention that this experience was not the norm. Everyone at the BCCA, including that nurse, has been kind, compassionate and has given me all the time and attention I've needed. And I did get a pretty good laugh out of the experience. You see, the reason you need a teaching session to poke yourself with these needles is because there's an odd plastic mechanism around the needle that you have to engage properly so you don't accidentally poke yourself a second time. Just let that sink in for a second. If necessity is the mother of all invention, just how many people were running around jamming their needles into themselves a second time before the drug companies had to create this mechanism?? Who were these people?? They owe me $4.50.
Onto the positive part of this story. I have good news! I had my first check up today since starting chemo and it's already working. The 3cm node under my arm has shrunk to the point where we can't even feel it. That 11cm spread is now down to 9.5cm. My CT results are back and all's clear. And see ya later pain killers, I don't need you anymore. I can lift my left arm above my head again. That may not sound like a big deal, but I like to sleep with both arms above my head and now I can. That needle I have to inject myself with? It's full of some magic drug and causes me to produce extra white blood cells so I stay superhuman healthy. It worked too! My white cell count was excellent and I've got the green light from my doc to go to my friend's party tomorrow night. Happy Birthday JB!!
So regardless of the hair situation, things are looking up. It's not as though I didn't know it would happen. And if that's the price I pay to make my body superhuman and kick some cancer ass then so be it. By my count the score is: Ashlyn = 1, Cancer = 0. Just like tonight's game, the better team won :)
Much love,
Ashlyn
"Do you mean, why did I cut it short and sorta look like your dad now?"
"YEAH!!! Why'd you do that??"
"Because I'm going to lose it all anyways buddy."
"Why?"
"Because that's how I'm going to become superhuman."
"Hey! I'm superhuman!! I'm getting my hair cut tomorrow and Auntie Jeannie's gonna give me chocolate!!"
Sounds like a plan my sweet nephew. Somebody better be waiting for me with chocolate when my hair falls out.
Well it looks like I won't have to wait too long for that chocolate... Since writing the above, it has started.
I was warming up Lyla's last bottle before bed and doing a little cleaning in the kitchen when I glanced down and noticed it. All over the kitchen floor were strands of my hair. It was strange at first because I'm used to seeing my really long hair all over the place. But this was my new short hair. I started looking around the apartment and it was everywhere. My hand bolted to my head and came back with 7 or 8 strands sticking in between my fingers. Then I did it again. And again. More and more hair each time. I couldn't help myself and started to cry.
BUT, the universe clearly didn't want me to be sad because I swear before the first tear hit my cheek Lapierre scored! GO CANUCKS GO!!! Even Lyla picked up on the excitement and started her weird little baby dancing. No one could ever cry watching Lyla's dance moves. No one. Meltdown successfully averted.
Back to the point... I saw my nephew yesterday because my savior of a sister-in-law was babysitting Lyla, yet again, for another "teaching session" at the Cancer Agency. The class: Stabbing Oneself With A Needle 101. Like a number of my 100 level courses, I should have skipped it. Here's how it went:
Nurse: "Ahhhhh, we don't actually have any of the needles you're going to be using here because they aren't government funded."
Me: "Uh ok, then what should we do here?"
Nurse: "Well I have this other practice needle with saline that's similar but I don't want to open it because it's our last one."
Me: "Alrighty then, what should we do here?"
Nurse: "Well when you open the box for your syringe at home there will be some written instructions.Read those."
Dear Cancer,
What a waste of my time. I can't believe I drove into Vancouver for this.You owe me $4.50 for the parking meter.
Love, Ash.
Now I should mention that this experience was not the norm. Everyone at the BCCA, including that nurse, has been kind, compassionate and has given me all the time and attention I've needed. And I did get a pretty good laugh out of the experience. You see, the reason you need a teaching session to poke yourself with these needles is because there's an odd plastic mechanism around the needle that you have to engage properly so you don't accidentally poke yourself a second time. Just let that sink in for a second. If necessity is the mother of all invention, just how many people were running around jamming their needles into themselves a second time before the drug companies had to create this mechanism?? Who were these people?? They owe me $4.50.
Onto the positive part of this story. I have good news! I had my first check up today since starting chemo and it's already working. The 3cm node under my arm has shrunk to the point where we can't even feel it. That 11cm spread is now down to 9.5cm. My CT results are back and all's clear. And see ya later pain killers, I don't need you anymore. I can lift my left arm above my head again. That may not sound like a big deal, but I like to sleep with both arms above my head and now I can. That needle I have to inject myself with? It's full of some magic drug and causes me to produce extra white blood cells so I stay superhuman healthy. It worked too! My white cell count was excellent and I've got the green light from my doc to go to my friend's party tomorrow night. Happy Birthday JB!!
So regardless of the hair situation, things are looking up. It's not as though I didn't know it would happen. And if that's the price I pay to make my body superhuman and kick some cancer ass then so be it. By my count the score is: Ashlyn = 1, Cancer = 0. Just like tonight's game, the better team won :)
Much love,
Ashlyn
Tuesday, 7 June 2011
Up to now
Let me just start by saying that I'm no writer. The thought of a blog has always terrified me because looking back on past samples of my writing usually makes me cringe...(think 9th grade English class "deep thoughts" journal)
Ok, deep breath, here we go...
Three weeks ago I was officially diagnosed with breast cancer. The long of the short of it is that I had been experiencing problems in the breast feeding arena for months and finally decided to wean. Then came the lump we all thought was a blocked milk duct. The ultrasound and mammogram came back clear but by the time we got those misleading results it was obvious that something was wrong. "But cancer doesn't hurt", I told myself and my friends and anyone else I was trying to convince. "And something this big would have been obvious on a mammogram", I reasoned. "Not so", said the specialist that day.
I was alone in his office having convinced myself that I was overreacting and Corey should just stay home with Lyla because it was all going to be ok. He told me he was positive there "was a malignancy there" but we still needed a diagnosis so off for the MRI and biopsies I went. Everything was rushed. Strings were pulled and favours were called in. All forms were marked urgent.
And so began the worst week of my life. I went from being in total denial, to very angry, to so unspeakably sad. What would Lyla and Corey do without me? At this time only family knew. We didn't want to worry any of our friends until we actually had some concrete information to share. But after a very tearful phone call to my biggest brother I realized how helpful it was to talk it through. And so we slowly started to tell our friends and asked them to spread the news because truly nothing has been more difficult then uttering the damn C word. And as people began to find out I began to hear survivor story after survivor story. I tell you, nothing makes me feel better than cancer survivor stories these days. Now filled with considerably more hope, I was ready for the news.
Less than a week later it was confirmed that I had triple negative breast cancer. Don't Google that if you don't want to be freaked out. Those were actually the words my oncologist said to me. Yes it's large (11cm across - too big to operate on right now), yes it's aggressive, yes it's spread to several of my lymphs nodes. We're still waiting on the final scans to come back that will rule out metastasis, so until then I'm at stage 3. And that completes the bad news portion of this entry.
The good news is that this tripple negative cancer responds particularly well to chemo. You have no idea how precious that sentence is to me. As soon as I heard it I felt better. I can do chemo. I've seen that Julia Roberts movie where she took care of that cancer patient. I know it's not that bad anymore. Bring on the chemo!
Bring it on they did. There is a normal 6 week wait to get on the chemotherapy treatment schedule. I was on it within 6 days. I'm grateful that it happened too quickly for me to really appreciate how scared I was. My first treatment was 10 days ago and I'm definitely on the "good days" portion of my cycle. There was nausea but the fatigue was worse. And for the first time in my life I didn't have an appetite. Not exactly how I planned on losing those last few baby pounds, but hey, I'll take it.
The worst part for me though was actually the guilt. Guilt over being too sick to go to my baby when she was giving my husband a hard time. Letting others take over Lyla-care has been the biggest adjustment. But having gone through my "bad days" it's become a black and white issue. I'll need the help. I am truly and deeply thankful to have the family I do. I have my pick of sitters and a rock star husband that takes over the house the minute he steps in the door from work.
And now for the sappy portion of this entry... I'm so so grateful for my family and friends. I have a ridiculously blessed life. My biggest problem these days is trying to get back to all the people reaching out to me. Please know that I am getting all the messages and that they all mean so much to me. I'm saving them all and I've been re-reading them when I've been down. I've got a lot to fight for. And I do intend to fight. If you want to hear more about my fight, come back here.
With much love,
Ashlyn
Ok, deep breath, here we go...
Three weeks ago I was officially diagnosed with breast cancer. The long of the short of it is that I had been experiencing problems in the breast feeding arena for months and finally decided to wean. Then came the lump we all thought was a blocked milk duct. The ultrasound and mammogram came back clear but by the time we got those misleading results it was obvious that something was wrong. "But cancer doesn't hurt", I told myself and my friends and anyone else I was trying to convince. "And something this big would have been obvious on a mammogram", I reasoned. "Not so", said the specialist that day.
I was alone in his office having convinced myself that I was overreacting and Corey should just stay home with Lyla because it was all going to be ok. He told me he was positive there "was a malignancy there" but we still needed a diagnosis so off for the MRI and biopsies I went. Everything was rushed. Strings were pulled and favours were called in. All forms were marked urgent.
And so began the worst week of my life. I went from being in total denial, to very angry, to so unspeakably sad. What would Lyla and Corey do without me? At this time only family knew. We didn't want to worry any of our friends until we actually had some concrete information to share. But after a very tearful phone call to my biggest brother I realized how helpful it was to talk it through. And so we slowly started to tell our friends and asked them to spread the news because truly nothing has been more difficult then uttering the damn C word. And as people began to find out I began to hear survivor story after survivor story. I tell you, nothing makes me feel better than cancer survivor stories these days. Now filled with considerably more hope, I was ready for the news.
Less than a week later it was confirmed that I had triple negative breast cancer. Don't Google that if you don't want to be freaked out. Those were actually the words my oncologist said to me. Yes it's large (11cm across - too big to operate on right now), yes it's aggressive, yes it's spread to several of my lymphs nodes. We're still waiting on the final scans to come back that will rule out metastasis, so until then I'm at stage 3. And that completes the bad news portion of this entry.
The good news is that this tripple negative cancer responds particularly well to chemo. You have no idea how precious that sentence is to me. As soon as I heard it I felt better. I can do chemo. I've seen that Julia Roberts movie where she took care of that cancer patient. I know it's not that bad anymore. Bring on the chemo!
Bring it on they did. There is a normal 6 week wait to get on the chemotherapy treatment schedule. I was on it within 6 days. I'm grateful that it happened too quickly for me to really appreciate how scared I was. My first treatment was 10 days ago and I'm definitely on the "good days" portion of my cycle. There was nausea but the fatigue was worse. And for the first time in my life I didn't have an appetite. Not exactly how I planned on losing those last few baby pounds, but hey, I'll take it.
The worst part for me though was actually the guilt. Guilt over being too sick to go to my baby when she was giving my husband a hard time. Letting others take over Lyla-care has been the biggest adjustment. But having gone through my "bad days" it's become a black and white issue. I'll need the help. I am truly and deeply thankful to have the family I do. I have my pick of sitters and a rock star husband that takes over the house the minute he steps in the door from work.
And now for the sappy portion of this entry... I'm so so grateful for my family and friends. I have a ridiculously blessed life. My biggest problem these days is trying to get back to all the people reaching out to me. Please know that I am getting all the messages and that they all mean so much to me. I'm saving them all and I've been re-reading them when I've been down. I've got a lot to fight for. And I do intend to fight. If you want to hear more about my fight, come back here.
With much love,
Ashlyn
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