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
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