Uh-oh! I spoke too soon about having minor side-effects of Round 16 of chemo. Nausea just started. I'm feeling pretty terrible, walking around with my shoulders slumped -- like my dramatic neice who is turning three. I'm dragging myself to cook supper, only because my Sweetheart has come down with a bug. I don't really want him infecting my food. I can't risk catching his cold. Plus he's exhausted. He hadn't yet fallen asleep last night when the earthquake hit at 4am. Mercifully, I was sound asleep.
So for my nausea, I have taken a dose of my Stematil tablets. I can feel that it's starting to work; I only feel crappy, not lousy. Or is it the other way around?
Oh, and I have a sore toe. I forgot to ask the nurse for the iced booties during the Taxol infusion. Darn. That's going to make it more difficult to find new shoes for the wedding. I hope I don't have to wear my granny shoes.
Enough typing. Supper is in the oven. I have 15 minutes to lay down before I have to check on it and turn on the potatoes. TTFN!
Tuesday, 6 November 2012
Power Outages, Post-script
When I posted my "Power Outages, Cancer-Style" blog on Facebook, my friend Pearl brought the Spoon Theory to my attention.
If you have ever struggled to explain or understand the limits of living with a chronic illness, like cancer, colitis, endometriosis or fibromyalgia, you need to read this post about the Spoon Theory. The Coles Notes version is that when you live with a chronic illness, your daily energy is limited, like a handful of spoons. Each activity you undertake is broken down into a number of strenuous tasks that cost you spoons. Getting to work in the morning isn't one step, it's at least five. By the end of they day, you don't have any energy (spoons) left. And if you do too much, as I sometimes do, you use up tomorrow's spoons. It is a terrific analogy.
Oh, how I can relate! I remember last fall the time that braiding Lena's hair took so much out of me that I had to sit down and throw up. All last winter, after taking a shower, I would have to lay down for twenty minutes. Recently, my pain nurse advised me to take my pain medication before trying to cook supper, to get ahead of the pain. I have to think about whether I can handle the Gentle Yoga class. I enjoyed it yesterday, but laying down on the mat was even tougher than getting up off it. I didn't expect that.
The point I really want to make is that living with a chronic illness is different from being healthy in ways that I'm still coming to understand. Whether you are struggling to understand someone with a chronic illness, or you are the one: be patient. It takes some time to get the hang of it.
If you have ever struggled to explain or understand the limits of living with a chronic illness, like cancer, colitis, endometriosis or fibromyalgia, you need to read this post about the Spoon Theory. The Coles Notes version is that when you live with a chronic illness, your daily energy is limited, like a handful of spoons. Each activity you undertake is broken down into a number of strenuous tasks that cost you spoons. Getting to work in the morning isn't one step, it's at least five. By the end of they day, you don't have any energy (spoons) left. And if you do too much, as I sometimes do, you use up tomorrow's spoons. It is a terrific analogy.
Oh, how I can relate! I remember last fall the time that braiding Lena's hair took so much out of me that I had to sit down and throw up. All last winter, after taking a shower, I would have to lay down for twenty minutes. Recently, my pain nurse advised me to take my pain medication before trying to cook supper, to get ahead of the pain. I have to think about whether I can handle the Gentle Yoga class. I enjoyed it yesterday, but laying down on the mat was even tougher than getting up off it. I didn't expect that.
The point I really want to make is that living with a chronic illness is different from being healthy in ways that I'm still coming to understand. Whether you are struggling to understand someone with a chronic illness, or you are the one: be patient. It takes some time to get the hang of it.
Power Outages, Cancer-Style
Yesterday, I heard cancer fatigue described as a "power outage." The term hit me. That is exactly how it feels. The fatigue hits out of the blue. You can be quite active, and have plans to do more, when all of a sudden you just NEED to lay down, and then you're out of commission for a few hours.
I had a power outage last week, before chemo. I had had lunch with a good friend and picked up groceries on the way home. Then I puttered for a bit. Just when I was about to lay down for a rest, my Sweetheart asked if I could make supper early, so he and the Bean could carve the rest of the jack-o-lanterns. Uh, sure, I said. Big mistake. By the time supper was ready (and all I had to do was reheat a couple of things), I was drooping at my plate. I laid down on the couch as soon as I finished eating. I tried to read some blogs on the laptop, but my eyes kept closing. Next thing I knew, I had slept for two hours! That is a cancer power outage.
Last round, I had a mental power outage. It was the day after chemo and I had to pick the Bean up after school to take her to an appointment. I screwed things up from start to finish. I went over to a neighbour's and got into my mind that I just needed to pick Lena up at the bus stop. Sweetie called me in time to make it to the school as planned. We were to pick up a vegetable for supper on our way home. Well, we poked around the mall longer than we should have, got caught in traffic and ended up at a different grocery store than where I aimed to go. In short, we came home with a vegetable after Sweetie had finished making... and started eating supper. Neither of us was happy with the way things turned out. Bad night.
Power outages like this, mental and physical, make me worry about my ability to work in the future. The Bean pointed out that the power outages come out of the blue, making it difficult to stick to a work schedule. What will the future hold?
I had a power outage last week, before chemo. I had had lunch with a good friend and picked up groceries on the way home. Then I puttered for a bit. Just when I was about to lay down for a rest, my Sweetheart asked if I could make supper early, so he and the Bean could carve the rest of the jack-o-lanterns. Uh, sure, I said. Big mistake. By the time supper was ready (and all I had to do was reheat a couple of things), I was drooping at my plate. I laid down on the couch as soon as I finished eating. I tried to read some blogs on the laptop, but my eyes kept closing. Next thing I knew, I had slept for two hours! That is a cancer power outage.
Last round, I had a mental power outage. It was the day after chemo and I had to pick the Bean up after school to take her to an appointment. I screwed things up from start to finish. I went over to a neighbour's and got into my mind that I just needed to pick Lena up at the bus stop. Sweetie called me in time to make it to the school as planned. We were to pick up a vegetable for supper on our way home. Well, we poked around the mall longer than we should have, got caught in traffic and ended up at a different grocery store than where I aimed to go. In short, we came home with a vegetable after Sweetie had finished making... and started eating supper. Neither of us was happy with the way things turned out. Bad night.
Power outages like this, mental and physical, make me worry about my ability to work in the future. The Bean pointed out that the power outages come out of the blue, making it difficult to stick to a work schedule. What will the future hold?
Round 16
Amazing. On Friday, I had my 16th round of chemo. Again, I had a dose of Taxol, with Herceptin and Pamidronate (for my bones).
I haven't posted much about my chemo in a while for two reasons. One is that, for a number of reasons (not readily apparent to me), I wasn't scheduled for chemo at the end of September. Then my next chemo was delayed to a Monday due to a mixup about when we returned from Disney. I had just more than a five week gap between treatments. The up-side of it was that I'm on a new three-week schedule that doesn't have me getting chemo the day before my nephew's wedding in Calgary. I am very glad that I can go with my family to the wedding. In addition to a family reunion on my husband's side, it will also turn into a high school reunion with the same BFFs who came to visit me last November for my birthday.
The other reason I haven't blogged for a while about my chemo is that it's going quite well. Knock wood. This round, I had very little in the way of side effects. There was no nausea. I had less fatigue than usual. The only real problem is that Taxol can give you diarrhea, while the stomach medicine Zofran can cause constipation (as can my pain medication). This round, I was able to experience both.
Also, sometime in the last couple of weeks, my swelling went down. I could wear my wedding rings for the first time in nearly a year! My watch is now spinning around my wrist in a very annoying fashion.
So the chemo itself isn't hitting me too hard, but I realize that what has depleted my batteries is the fact that I've been on chemo for a year and had cancer for a year. I am coming to realize that I'll ever be the same.
More on this, in my next installment, "Power Outages, Chemo-Style."
I haven't posted much about my chemo in a while for two reasons. One is that, for a number of reasons (not readily apparent to me), I wasn't scheduled for chemo at the end of September. Then my next chemo was delayed to a Monday due to a mixup about when we returned from Disney. I had just more than a five week gap between treatments. The up-side of it was that I'm on a new three-week schedule that doesn't have me getting chemo the day before my nephew's wedding in Calgary. I am very glad that I can go with my family to the wedding. In addition to a family reunion on my husband's side, it will also turn into a high school reunion with the same BFFs who came to visit me last November for my birthday.
The other reason I haven't blogged for a while about my chemo is that it's going quite well. Knock wood. This round, I had very little in the way of side effects. There was no nausea. I had less fatigue than usual. The only real problem is that Taxol can give you diarrhea, while the stomach medicine Zofran can cause constipation (as can my pain medication). This round, I was able to experience both.
Also, sometime in the last couple of weeks, my swelling went down. I could wear my wedding rings for the first time in nearly a year! My watch is now spinning around my wrist in a very annoying fashion.
So the chemo itself isn't hitting me too hard, but I realize that what has depleted my batteries is the fact that I've been on chemo for a year and had cancer for a year. I am coming to realize that I'll ever be the same.
More on this, in my next installment, "Power Outages, Chemo-Style."
Tuesday, 23 October 2012
It's Not Something to Celebrate
For the last week, I've been avoiding something: looking at last year's calendar. I broke down today and confirmed the anniversary I had been trying to forget.
Last year, on Tuesday, October 18, a doctor told me and Geoff that I have Stage IV Invasive Ductal Breast Cancer. Later that day, I told my parents, my boss and our little girl. It wasn't as hard as you would think. We knew it was coming, most of the crying was done. The meeting with the doctor just made it real. He had the biopsy results.
To this day, I still have trouble believing it. I keep thinking there must have been some kind of mistake or misunderstanding. I can't have cancer. I can't be dying. Then I remind myself that they did the biopsy... on my breast... and it was cancerous. I have breast cancer.
I suppose the upside of living a year with advanced breast cancer is that you lived for a year.
But it's still not an anniversary I celebrate.
P.S. I can't close without taking a moment to recognize all the support we have received in the last year from friends, family, neighbours, Transport Canada, Lena's school, Mom and Dad's church, and of course the hospital and community care workers. Last October 18, I was very sick and very scared, and by the time chemo started at the end of the month, very overwhelmed. I don't know what Geoff and I would have done without that support. I just don't know. Thank you.
Last year, on Tuesday, October 18, a doctor told me and Geoff that I have Stage IV Invasive Ductal Breast Cancer. Later that day, I told my parents, my boss and our little girl. It wasn't as hard as you would think. We knew it was coming, most of the crying was done. The meeting with the doctor just made it real. He had the biopsy results.
To this day, I still have trouble believing it. I keep thinking there must have been some kind of mistake or misunderstanding. I can't have cancer. I can't be dying. Then I remind myself that they did the biopsy... on my breast... and it was cancerous. I have breast cancer.
I suppose the upside of living a year with advanced breast cancer is that you lived for a year.
But it's still not an anniversary I celebrate.
P.S. I can't close without taking a moment to recognize all the support we have received in the last year from friends, family, neighbours, Transport Canada, Lena's school, Mom and Dad's church, and of course the hospital and community care workers. Last October 18, I was very sick and very scared, and by the time chemo started at the end of the month, very overwhelmed. I don't know what Geoff and I would have done without that support. I just don't know. Thank you.
Tuesday, 16 October 2012
Dear Pandora: Think Before You Pink
This being October, we seem inundated with corporations and sports teams acknowledging Breast Cancer Awareness Month. Just before our trip down to Disney World, I received this email from the company that makes Pandora jewellery with a special offer of a free pink bracelet with a $100 purchase and a note that "a percentage of proceeds from the retail price of select charms, necklaces and pendants benefits the Canadian Breast Cancer Foundation..."
Of course, I'm not asking you to rush down to Pandora. I'm not advertizing, I'm asking you to think, before you pink. As you know, I too support the Canadian Breast Cancer Foundation, and I encouraged you to support it through my participation in the Run for the Cure. My concern about Pandora's support is that the company doesn't tell us how much it is donating for each purchase. Some companies give a set amount and our individual pink purchases don't raise the amount. Pandora gives an amount per purchase. However, it isn't specific about which products trigger a donation, nor what is the percentage of proceeds donated. That bothered me.
Farther down, you will see my email to Pandora asking the company to take this opportunity to provide more information for those of us who think before we pink.
As I mention in my email, for my birthday last fall, just after my diagnosis, Sweetie and the Bean bought me a Pandora bracelet with a pink ribbon charm. The bracelet has become a special way for our family to commemorate our life together -- my favourites are the soccer ball and the teapot. I like the Pandora products. But wouldn't it be nice if Pandora took an extra step towards transparency in its support for the Canadian Breast Cancer Foundation by providing details on how much it gives from which purchases. I've asked them to do it.
And I ask you to think, before you pink.
----- Forwarded Message -----
From: xxxxxxxxxxxxxxxxxxxx
To: "CAConsumer@PANDORA.net" <CAConsumer@PANDORA.net>
Sent: Tuesday, October 16, 2012 11:40:19 AM
Subject: Re: Receive a Pink PANDORA Bracelet during October
I appreciate the support Pandora is offering to the Canadian Breast Cancer Foundation through this offer, however your company could be more transparent about it's actual level of support. More and more, women like myself with breast cancer are encouraging our friends and family to "think before they pink."
What I mean is that before purchasing the obiquitous pink merchandise, we should inform ourselves about what exactly our purchase is supporting. It is helpful that you have been clear that you are supporting the Canadian Breast Cancer Foundation. Consumers can easily confirm that this is a legitimate charity which publishes information about its administrative and fundraising costs, as well as it's major areas of spending. But how much is Pandora providing? From your email, I don't know if Pandora is giving five cents per charm or something more significant. I don't know if your donation is capped or if when I spend more, you really give more.
If you take a look at recent postings in social media, you can learn about the growing concern about the "pinkification" of breast cancer. From there, Pandora has an opportunity to improve the nature of its support. It would be very much appreciated by the breast cancer community, and particularly by me. Pinkification has given many North Americans the impression that a breast cancer diagnosis is the entrée to a happy club. Don't let your company be fooled. There is no cure for advanced breast cancer. I too support the Canadian Breast Cancer Foundation because it supports research that may find the cure that will save my life.
Last October, I was diagnosed with advanced breast cancer. A month later, on my birthday, my husband and young daughter bought me my first Pandora bracelet, with a pink ribbon charm. If Pandora would take this opportunity to be more transparent about what it is donating, or has donated, to the Foundation, I would wear my bracelet with even more pride.
Thank you for considering my request.
Katherine Moynihan
(see my Kate Has Cancer blog at http://katebreastcancer.blogspot.ca/)
Of course, I'm not asking you to rush down to Pandora. I'm not advertizing, I'm asking you to think, before you pink. As you know, I too support the Canadian Breast Cancer Foundation, and I encouraged you to support it through my participation in the Run for the Cure. My concern about Pandora's support is that the company doesn't tell us how much it is donating for each purchase. Some companies give a set amount and our individual pink purchases don't raise the amount. Pandora gives an amount per purchase. However, it isn't specific about which products trigger a donation, nor what is the percentage of proceeds donated. That bothered me.
Farther down, you will see my email to Pandora asking the company to take this opportunity to provide more information for those of us who think before we pink.
As I mention in my email, for my birthday last fall, just after my diagnosis, Sweetie and the Bean bought me a Pandora bracelet with a pink ribbon charm. The bracelet has become a special way for our family to commemorate our life together -- my favourites are the soccer ball and the teapot. I like the Pandora products. But wouldn't it be nice if Pandora took an extra step towards transparency in its support for the Canadian Breast Cancer Foundation by providing details on how much it gives from which purchases. I've asked them to do it.
And I ask you to think, before you pink.
PANDORA Club <pandora@club.pandora.net>
To: xxxxxxxxxxxxxSent: Monday, October 1, 2012 4:18:03 PM
Subject: Receive a Pink PANDORA Bracelet during October
My jewellery
Show Your Support Against Breast Cancer with PANDORA Dear Katherine,
There are many ways to show your support in the fight against Breast Cancer, and none are as beautiful as our charms. For the entire month of October, when you purchase $100 or more of PANDORA jewellery, you’ll receive one of our pink leather bracelets* (a $50 retail value).Kind regards,A percentage of proceeds from the retail price of select charms, necklaces and pendants benefits the Canadian Breast Cancer Foundation’s vision of creating a future without breast cancer. Visit cbcf.org for more information.
* See participating stores for details. Good while supplies last. Limit one per customer. Find your nearest PANDORA retailer by clicking here.Pandora Club
----- Forwarded Message -----
From: xxxxxxxxxxxxxxxxxxxx
To: "CAConsumer@PANDORA.net" <CAConsumer@PANDORA.net>
Sent: Tuesday, October 16, 2012 11:40:19 AM
Subject: Re: Receive a Pink PANDORA Bracelet during October
I appreciate the support Pandora is offering to the Canadian Breast Cancer Foundation through this offer, however your company could be more transparent about it's actual level of support. More and more, women like myself with breast cancer are encouraging our friends and family to "think before they pink."
What I mean is that before purchasing the obiquitous pink merchandise, we should inform ourselves about what exactly our purchase is supporting. It is helpful that you have been clear that you are supporting the Canadian Breast Cancer Foundation. Consumers can easily confirm that this is a legitimate charity which publishes information about its administrative and fundraising costs, as well as it's major areas of spending. But how much is Pandora providing? From your email, I don't know if Pandora is giving five cents per charm or something more significant. I don't know if your donation is capped or if when I spend more, you really give more.
If you take a look at recent postings in social media, you can learn about the growing concern about the "pinkification" of breast cancer. From there, Pandora has an opportunity to improve the nature of its support. It would be very much appreciated by the breast cancer community, and particularly by me. Pinkification has given many North Americans the impression that a breast cancer diagnosis is the entrée to a happy club. Don't let your company be fooled. There is no cure for advanced breast cancer. I too support the Canadian Breast Cancer Foundation because it supports research that may find the cure that will save my life.
Last October, I was diagnosed with advanced breast cancer. A month later, on my birthday, my husband and young daughter bought me my first Pandora bracelet, with a pink ribbon charm. If Pandora would take this opportunity to be more transparent about what it is donating, or has donated, to the Foundation, I would wear my bracelet with even more pride.
Thank you for considering my request.
Katherine Moynihan
(see my Kate Has Cancer blog at http://katebreastcancer.blogspot.ca/)
Saturday, 13 October 2012
Metatastic Breast Cancer Day
Yay! Today is the official day to, um, celebrate, or perhaps to recognize, metastasized breast cancer. Hooray!
If you really want to do something about metastasized breast cancer, find a way to contribute to finding a cure. Don't wear pink for me, though I do appreciate the thought. If I am to live to see my grandchildren, what I need is a cure. Please consider giving to an organization like the Canadian Breast Cancer Foundation which contributes a significant amount of its fundraising to research.
To all of you who pledged your financial support for my participation in last month's Run for the Cure, thank you. You have made a difference that just might save my life.
Please think before you pink.
If you really want to do something about metastasized breast cancer, find a way to contribute to finding a cure. Don't wear pink for me, though I do appreciate the thought. If I am to live to see my grandchildren, what I need is a cure. Please consider giving to an organization like the Canadian Breast Cancer Foundation which contributes a significant amount of its fundraising to research.
To all of you who pledged your financial support for my participation in last month's Run for the Cure, thank you. You have made a difference that just might save my life.
Please think before you pink.
Subscribe to:
Posts (Atom)