tag:blogger.com,1999:blog-1182808877043540052024-03-06T12:01:41.966-08:00Aside from cancer, I never get sick.A one-stop blog for my friends and family who want to be kept in the loop on this cancer thing (I don't like the words journey or battle.....in general, not just as they apply to cancer). Also a place where others going through similar experiences themselves or with a loved one can share and chat.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-118280887704354005.post-24185352159337145522014-06-23T08:45:00.001-07:002014-06-23T08:45:36.085-07:00The Biggest Thanlk You<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">My blogs of
late have not been the most uplifting, which unfortunately is the ebb and flow
of living with cancer. However, while this one may be short and sweet I hope it
is one that makes you smile as I have been since yesterday.<o:p></o:p></span></span><br />
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">One of our
daughters joined the competitive world of women’s roller derby a couple years
ago and in the last month or so came up with the idea to do a charity scrimmage
in my hometown of Walkerton and the money raised could be donated to charities
of my choice. Along with her friends and other competitors in the derby world
they start working on an event that culminated yesterday into one of the most
overwhelming days of my life.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">Aside from
the fact that we had well over 500 people attend and made over $10,000, it was
the ‘derby love’ in the room that was palpable and experienced by everyone in
attendance, including those who had never had any involvement with roller derby
before. I had to struggle to keep myself from losing it a few times, like when
two young members of the junior squad presented me with a bracelet they had
made for me though they had never met me; or when I pulled into the parking lot
and saw family members I hadn’t seen in years, who had travelled many miles,
just to come and support me and the event; or when I saw the tables full of
donated prizes so generously provided by people and businesses in my community
and beyond; or when I read the list of sponsors who made it possible to cover
all the expenses related to the day. <o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">All these
moments were overwhelming for me but none more so than when I had a quiet
moment to myself and was able to look around the crowd and take it all in. To
see the friends and family from across Ontario hugging each other and catching
up….to see my own children running around doing jobs that needed to be done,
smiling all the time…..to see my family and friends helping flip burgers, sell
tickets and hug each other…..to see my children’s friends come and volunteer
their Sunday because they wanted to support our family. In that quiet moment,
taking all that in, I truly experienced what love is, what hope is, what
blessings are and what miracles can be.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">It was a
long week leading up to the day as I was anxious about how I was going to feel
and there were even times when it was touch and go whether I would be able to
attend or not. But I prayed more than I have in years and envisioned a positive
day. It turned out to be all that and more.<o:p></o:p></span></span></div>
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">As I
continue to try and find ways to deal with the cancer and the treatment side
effects I will be able to think back on this day and remember how it was more
than I could have ever envisioned. I won’t even try and thank all those who
made it such a special day for me because as my grandson says that would be “to
infinity and beyond.” But please know that you are appreciated and loved and
remembered by me and my family always.<o:p></o:p></span></span></div>
<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">Until next
time……carry on.<o:p></o:p></span></span>Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com1tag:blogger.com,1999:blog-118280887704354005.post-19991616162734745722014-06-09T11:37:00.003-07:002014-06-09T11:37:44.967-07:00In Sickness and in Health
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<span style="line-height: 115%;"><span style="font-family: Calibri;">When I found
myself lying on my bathroom floor two weeks ago, in the fetal position, my
husband beside me with an enema bottle, a lot of thoughts went through my head.
One of which was I have to write about this. And, I needed to do it before too
much time had lapsed so I could still feel the raw emotion of it all. Hence,
here is my return to my blog after a few weeks’ absence.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">It’s not
that I have a sado-masochistic relationship with my readers or that I’m
determined to gross people out, but rather that I’m committed to writing and
showing all sides of cancer. One of the reasons I started the blog was so that
other people going through a similar experience, or caring for someone who was,
could learn, relate and not feel so alone. I vowed I wouldn’t sugar coat
anything or hide things that might make people feel uncomfortable because I wanted
to be authentic. This brings me back to the enema.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">One of the
hardest side effects of pain medication for me has been the constipation. Of course
the more I stress and think about it, the worse it gets. Eventually, the pain
is one of the most unbearable for me, crippling me every time I try to walk. In
fact, the only time I have relief is when I don’t move at all so I spend a lot
of time in bed, not moving. In trying to deal with it, I take numerous
laxatives and stool softeners, but it gets to a point where there can be no
action with additional help. Nurses toss around words like impacted,
extraction, enemas. I toss my cookies just thinking about it.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">I’ve never
had a colonoscopy and don’t deal well with any talk or treatment related to
things of that nature. It’s probably one of my biggest fears so despite the
pain I was in I just couldn’t comprehend doing what I knew needed to get done.
I loved the nurses’ description that I would be feeling much better within 15
minutes, but making the decision was a tough one for me. In the end, I decided
I needed this to be administered by my husband because he knew how scared and
uncomfortable I was with the idea and so I figured I could use all the empathy
I could get. I knew the nurses would be empathetic and compassionate too but, I
just wanted to be in the comfort of my own bathroom and cry like a baby if I
wanted to.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">This was a
tough call because I still had some pride and wanted to hang on to as much
dignity as possible. “Please,” my husband said, “I saw you give birth….your
dignity was lost a long time ago.” Fine, I agreed, but I told him I was going
to write about it and he was going to be a lead character. He wasn’t so crazy
about that. He asked why I couldn’t just say a miraculous angel descended on me
and gave me relief. No, I countered, this was not going to be the immaculate
extraction.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">To feel like
I needed to have some control I insisted that he read every warning, instruction,
hazard symbol on the bottle. Even then I didn’t trust I was getting all the
goods and because I couldn’t read the bottle myself, my daughter generously
agreed to type out everything that was on the bottle in an extra-large font so
that I could read it myself. God bless her because that meant not only was she
learning step by step what was going to be done to me she also typed it knowing
her dad was the one going to be doing it. It wasn’t long after that she bought
me a magnifying glass to be able to read all my other medical instructions up
close and personal all on my own. Too much information is now an understatement
in our house.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">So there we
found ourselves, husband and wife, bathroom floor, in a position I never would
have imagined. I wept knowing fully for the first time since all this started
what it really meant when we said those vows ‘in sickness and in health’. In
the end we got through it and it worked and while I wasn’t quite doing the
happy dance I felt better than I had in weeks. It was a good thing too as it
was just the start of a rough couple weeks ahead where I at least had one major
issue off my health plate. I am diligent about continuing to take laxatives and
I live on watermelon and liquids. I hope it never gets to that point again but
if it does I know there is a solution and I know I will be able to get through
it thanks to my partner.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">Later that
night after I picked myself up off the bathroom floor I tweeted the following “going
outside your comfort zone, pushing through pain and having someone with you who
you trust 100%, that’s when good shit happens.” I had a lot of people favourite
and retweet that and I don’t think they realized how literal I was being, but
whether it’s literal or figurative, it sure is true.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Calibri;">Thank you to
all those who have told me how much they have missed the blog but understand how
important it is for me to rest and get better right now. I do hope to continue
writing in the coming weeks but it may not always be weekly. I am constantly
feeling blessed by all the support and kindness shown to me and my family.<o:p></o:p></span></span></div>
<br />
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<span style="line-height: 115%;"><span style="font-family: Calibri;">Until next
time…..carry on.<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com5tag:blogger.com,1999:blog-118280887704354005.post-91535207005552538332014-05-26T09:56:00.000-07:002014-05-26T09:56:26.654-07:00Break TimeHello Everyone....this is going to be short and sweet. I am taking a few weeks off from writing my blog. I'm hoping to get lots of rest and get some good results from the next course of treatment so that I can come back and write blogs that are worthy of the standards you all deserve. Energy is a commodity in short supply for me right now and I just don't feel like I can do my writing justice while I want to focus everything I have on getting up to par (or sub-par at least!).<br />
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You all have made me feel like a rock star in the last few months and I'm so honoured and humbled by your words and support that you all offer so graciously. I love that so many of you look forward to the blog each week and I am sorry for those who will be disappointed to read this week's. Believe me, I am disappointed as well. I get just as much out of writing them as many of you get out of reading them.<br />
<br />
I believe it won't be long before I am writing them again. Please continue to keep your prayers and positive thoughts coming as they help me and my family tremendously. <br />
<br />
I hope to have (good) updates in the next couple week but until then.......carry on.<br />
Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com10tag:blogger.com,1999:blog-118280887704354005.post-13373359549167898852014-05-19T16:39:00.002-07:002014-05-19T16:39:41.072-07:00Adapting to My RealityIf you've been reading my blog recently or you are someone who sees and talks to me on a regular basis then you know it's been a rough couple weeks. What started as a cough, turned to pain that sent me to the ER twice and then culminated last week with another hospital visit due to severe nausea and vomiting. Though I wasn't scheduled for another scan until July, the doctor ordered one last week to see if anything had changed in the seven weeks since my last scan. It turns out something had.<br />
<span style="font-size: x-large;"></span><br />
The cancer has now entered into my liver, with several tumours spread throughout and one larger one which is the source of the pain. Until it was confirmed by the doctor, I had been trying to convince myself that the symptoms were side effects of the new medication. Terry was hoping it was the flu. Even though I've been resistant to it up until this point in my life, there was a flu bug going around so we was trying to convince himself of something too. I snapped at him, saying, "it's not the flu" which was wrong I know, but when I'm scared and anxious I snap, usually at him. Luckily he has adapted. As have so many others, to their credit and my unending gratitude.<br />
<br />
Thank you to those who have had to deal with <em>my</em> changes--change in health, change in lifestyle, change in behaviour--and have changed accordingly. It's more than a person should ever expect but I'm so grateful. I can no longer stay up past 10 pm and I can't drink so while I never thought of myself as a party girl, I don't love the night life like I used to. Thank you to those who have worked around that, who now visit me at different times, who bring movies to watch instead of wine to drink, who sit with me at auctions instead of on bar stools and who still suggest road trips, only now to Shopper's Drug Mart.<br />
<br />
My kids are all adapting at different paces, because of their different personalities. Acceptance comes harder for some but they're all working really hard at it. My grandkids have adapted well though they don't realize it. The eight-year-old remembers that I used to play endless games of mini hockey or pitch balls to him for an entire afternoon. Luckily, he's at the age where he now has many friends he'd rather do that with than his Grandma so we both win because I still get to see him run around and have fun and he thinks I'm giving him his space. The three-year-old, unfortunately, will never have a memory of me playing hockey and ball with him, but last Friday he got to make me pretend soup in a big vase with all kinds of ingredients and feed it to me over and over again. He was in his glory. It's just a different memory.<br />
<br />
My husband has adapted in ways too numerous and personal to list, but what I have treasured the most is how he has filled in for my own body parts that have failed me. He is my legs now in the middle of the night when I need extra pain medication. He is my hands when I'm too weak to open a bottle. Most recently, and most hard for me to accept, he is my eyes when I need to read and get information. <br />
<br />
The tumour in my eye seems to have grown with the tumours in the liver to the point where I don't know how much longer I will be able to write this blog. I'm writing this one in the largest font I can and it's still taking me twice as long. I'm regretting more than ever not taking a typing class just so that I'd at least know where the keys are without looking. I type a mile a minute (usually) but never realized how much I relied on looking down at the keyboard to see the letters. I stopped reading books about a month ago and the newspaper reading ended this week. I'm hoping to be able to increase the font size on my phone so I can still read messages but that may be the next casualty of my clouded eyesight.<br />
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A few posts back I shared my doctor's ABCD treatment plan but with this latest progression, we've had to stop step B only a few weeks in, skip step C altogether and go right to step D, the final step--IV chemotherapy. That will start in two weeks and will continue every three weeks for as long as it works. We hope that means things slow down, maybe shrink a little, and, most importantly, give me some quality of life. Oddly enough, I'm not as anxious as I am to start this as I might have been if we'd done it right at the start last fall.<br />
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My only experience with IV chemo to this point has not been a pleasant one. I think that's partly because the first time around, other than the lump in my breast, I had no acute physical symptoms of cancer. I had some achiness in my armpit and was more tired than usual, but overall I felt in pretty good health. With the chemo came the nausea, vomiting, pain, constipation, mouth sores, etc. I only felt sick when I was treating the cancer and that's what I wanted to avoid experiencing again.<br />
<br />
But this time around I've been dealing with all those symptoms because of the cancer. My doctor said the chemo might actually give me some relief so, while I won't go so far as to say I'm looking forward to it, I will say I am hopeful there will be some positive outcomes. I guess I've adapted to my situation as well.<br />
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Adapting to our environment is how we survive. My friends and family who have adapted to my situation have made it so much easier on me and I think it's helped them as well. After I snapped at Terry for suggesting that maybe I "had the flu" I did apologize but, I also explained that being in denial about my situation not only is a disservice to him but it does me no favours at all. I don't expect everyone to be able to handle what is happening to me and I know not everyone is good at adapting or accepting change, but I do know I need to be surrounded by people who understand the reality of my situation. That doesn't mean they know exactly what to say or do all the time. It just means they acknowledge the situation.<br />
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That's not to say I am not extremely moved by what some people have done for me in recent weeks. I woke up one morning this weekend to see a family member had delivered some homemade muffins that were a godsend and the only thing of sustenance I was able to keep down that morning. So I ate almost all of them. A couple weeks ago I came home to find a beautiful, hand-knit shawl left by someone I've known for years but don't get to see very often. After reading about how yucky I was feeling she wanted me to be comfy and warm. I am every time I wrap myself in it, not only because of the fabric but because of the love with which it was made. I received cards in the mail from loved ones who wanted me to know I was in their thoughts. And, yesterday afternoon, a very special friend, after learning about the latest development, dropped off a lovely plant and card. She knew I wasn't going to be home but she wanted me to know she was thinking of me.<br />
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It's not these specific acts or items that mean the most to me but the fact that the people doing them are showing me that they understand and acknowledge what is happening to me. They 'get it' and they want me to know they get it. Other people show they get it just by listening to me. As stated already, I'm not able to be as social as I once was and so I'm not up for company all the time (with warning I can get there though so please don't stop inquiring about visits!). I love that the people who love me realize that and are okay with it even though I know how much they want to be here with me. My mom is one of those people. She will drop everything in a minute and be here with me (and has offered to do that several times) if I need her to be. I love that she wants to do that and I love that she understands that it's just not something I'm up for right now. <br />
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Others have showed me that they get it by what they say. The common denominator amongst the people closest to me, when they found out about this latest setback, was what they said to me. Everyone, whether in an email, in person or a text, said the exact same thing. "I don't know what to say." Which was the perfect thing to say. I don't know what to say either. <br />
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The best I can hope for is that people in my life can accept my reality, adapt to that reality if possible, and leave denial where it belongs--in Egypt (cue the drumsticks...ba-dump-bump......had to get my cheesy humour in there somewhere!).<br />
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Until next time.....carry on.<br />
<span style="font-size: x-large;"></span><br />
<span style="font-size: x-large;"></span><br />
<span style="font-size: x-large;"></span>Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com4tag:blogger.com,1999:blog-118280887704354005.post-44146375124546468712014-05-12T10:19:00.000-07:002014-05-12T12:49:13.473-07:00Mothering DaysOne of the things that changed for me after the word terminal became part of my vernacular, was my approach to holidays. Each time one rolls around, whether it's Christmas, birthdays or family vacations, I can't help but wonder how many more I will celebrate. This can be dangerous as I find myself perhaps going over the top or spending more than usual to try and make it as memorable as possible. I often joke that I will be one of those lucky buggers who outlives their prognosis but will be dead broke from living my life to the fullest.<br />
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Mother's Day isn't quite like one of those holidays. Don't get me wrong, I love and appreciate everything my kids do for me on Mother's Day and was thrilled that I got to see each of them yesterday, especially since they all have busy, active lives and not all of them live just around the corner. But, I don't <em>need</em> to see or talk to my kids on Mother's Day to know I am loved and honoured by them. That happens regularly when I get random visits, hugs for no reason, and texts in the middle of the day just to check in on me or share some good news.<br />
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Yesterday was one of my favourite kind of days because it was warm and sunny and I was surrounded by family. When I reflected on that last night I realized that I don't worry so much about not being around for another Mother's Day, but I do worry that I will never have enough time to be able to tell and show my children how much they mean to me and how they have all, individually and as a unit, changed my life.<br />
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My kids are all adults now, though the youngest just barely, but I never experienced empty nest syndrome. From getting on the bus for the first day of Kindergarten to heading out the laneway to post-secondary school, I couldn't wait for my kids to start each new journey of life. Every time they were presented with an opportunity, which included travelling to foreign places alone or moving across provinces, I always encouraged them to go for it. Would I miss them? Absolutely. That just gave me more reason to travel myself so I could see them as much as possible. I want them to experience as much as they can, as often as they can.<br />
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I've never wanted my kids to need me. I know that doesn't sound good, but let me explain. When they were little and wanted to know what something said, I told them to 'sound it out.' As they got older I made sure they knew how to cook, wash their clothes, drive, make an appointment for themselves, order their own meal in a restaurant, board a plane and make decisions. It doesn't mean I wasn't there to help them if needed, but my goal was always to raise four independent and self-sufficient children and I think I have (of course only with the help of their dad). The best words I can hear from them is when they say, "I know I don't need to do this, but can I just run something by you."<br />
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I've tried hard to resist giving advice (it's really hard) and instead I like to listen. I listen when they talk about things they like to do or things they enjoy and tuck that away to reference when it's time to buy a birthday or Christmas gift. I listen when they need to vent or just talk through a plan out loud. My kids aren't perfect and I've never pretended they were (they would say the same about me as well). I love them unconditionally, without judgement, whatever they do and whatever they say. Their opinions are sometimes different than mine and that's okay too. I love that they have opinions, often strong ones. I love that they can stand their ground on issues that are important to them. I love that they can look people in the eye and have a conversation about all kinds of different things. I love that they are passionate about what they do, whether it's work or hobbies or sports. My kids are all incredibly smart, not because of any letters they may or may not have at the end of their names, but because they engage in the world and learn about things that matter to them and to others. They are also all incredibly funny, in completely different ways, which means when we are all together, while it may be chaotic, there is always laughter. Okay, maybe they are perfect. <br />
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There are distinct things about each of them that I love but I have to be careful about getting too specific 'cause they're all just so damn competitive (which I think is a good quality as long as they also show sportsmanship). <br />
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Our oldest can be a little guarded, like me. She keeps her emotions in check. I have seen this girl in incredible pain and never shed a tear. When people talk about not knowing how some women do as much as they do, she's one of those women. Many times I've learned how to be a better mother by watching her. She epitomizes the phrase 'work hard and play hard.' It's not often I get to see her relax so when that happens I just sit back and watch her. When she pulls up a patio chair to settle in for the afternoon or, more rare these days, when she curls up on our couch in front of the fire, it's a good day. Sometimes I feel like we grew up together. We can be silent in each other's company and yet feel so comfortable. When she walks into the house it becomes home.<br />
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The second oldest is the complete opposite in so many ways. She wears her heart on her sleeve and it's a big heart. We can take her hands in ours, look her in the eyes and tell her we love her and there will be gigantic teardrops streaming down her cheeks in seconds. This is true. Her dad and I have done it many times over the years just to see if we still can. We're mean that way. She has been telling me things since she was four-years-old. About herself. About her friends. About a special rock she found in the backyard. About the world. If there is a child I live vicariously through it's her, not because she has done anything more extraordinary than the others, but because at 30-years-old she still looks at everything with wonder and awe. I know she has tough days but she is the most consistently happy person in our family and when I've spent just a few hours in her presence I feel joy.<br />
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Our next one is the only boy. He is strong and masculine and a hard worker, yet he's never ashamed or embarrassed to show his love for me. He has no problem giving me a hug and telling me he loves me whether it's in a shout-out on Twitter or in front of his friends. I love how honest he is, not just with me, but with everyone. Sometimes that gets him into jams, but it always makes me proud. It tells me that he knows, that no matter what, he will always have a family who supports him and loves him unconditionally. I always have his back and I know he always has mine. And, at the risk of offending anyone else in the family, he makes me laugh like no one else can. But more importantly, he always makes me smile.<br />
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Our youngest came along a few years later. Because of that, for a lot of her life, it's been just her and me. She challenged me from the get-go and kept me on my toes just when I thought I could get comfortable and complacent (being child number four and all). She is just starting to get her footing in the word, barely out of her teen years. Those years were a struggle for her, and as a result, for us. In our quest to get her healthy and happy, it almost broke us. Almost. My mind still can't go to the place that knows how close we came to losing her. Today, she is someone who I draw my strength from. She shows me every day what the word resiliency means. If there is such a thing as a child being your soul mate then she is mine, because I know I live within her and she lives within me. Her spirit gives me wings.<br />
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With all of my kids, I didn't always come at it the right way and I made a lot of mistakes. The poet Maya Angelou says, "<em>when you know better, you do better</em>" and that's a tenet I try to live by. As long as I can own my mistakes, learn from them, and do better, then I hope they will continue to forgive those mistakes. I don't believe they are done needing a mother yet, but likely no mother ever does. I know I'm not done being one yet. There are graduations I still need to see. There are grandchildren I still need to meet. There are weddings I still need to attend and vacations I still need to be part of. There is listening I still need to do and hugs I still need to give. There are stories and experiences I still need to hear about.<br />
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Every day I negotiate for one more--one more holiday, one more year, one more milestone. I pray to an entity I'm not sure exists that I can be here for as long as it takes to make sure they are all where they need to be in life. It's not about how many Mother's Days I have left but how many days I have left to be a mother and for me that will never be enough.<br />
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Until next time.....carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com8tag:blogger.com,1999:blog-118280887704354005.post-22827936702401990512014-05-05T17:44:00.002-07:002014-05-05T17:44:47.968-07:00Feeling Tired is ExhaustingI have a medical assessment I must undergo each month before I can take a certain injection. Here are three questions I am asked each time (amongst others):<br />
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1. Are you tired?<br />
2. Are you fatigued?<br />
3. Are you drowsy?<br />
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These are three different questions. Seriously. I still don't know if I understand the difference between the three but just trying to figure it out left me exhausted. To make it worse, I'm asked to rate my level of tiredness, fatigue and drowsiness. I always find this a difficult task because I don't know what my baseline is supposed to be--since I was diagnosed? Since I've been an adult? Since I've stopped drinking? <br />
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Sleep has always been elusive to me, at least since I've left my teen years. On average I probably get five hours of sleep a night, usually only about three of it uninterrupted. This has been standard for about the last 20 years and I do okay I on it. I may not always wake up feeling refreshed but once my day gets going I'm good until bedtime. I've never been one to nap during the day and have always had a hard time understanding grown-ups who do. Even a 10-minute catnap would keep me wide awake past midnight. This ability to function at a high level with little sleep has served me well over the years such as when we do our annual Black Friday shopping trip, which requires sharp decision-making skills and quick reflexes for about 36 hours straight, or when I decide I'm going to watch the whole fifth season of Sons of Anarchy over a two-day period. <br />
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The Merriam-Webster dictionary defines the three words as:<br />
<ul>
<li>Tired--feeling a need to rest or sleep</li>
<li>Fatigued--the state of being very tired: extreme weariness</li>
<li>Drowsy--tired and ready to fall asleep</li>
</ul>
My own interpretation is that you can be tired but might not necessarily be able to go to sleep. Your body needs it, but maybe your mind or your schedule won't allow it. So you burrow through, usually get a little grumpy in the process, until you are fatigued, which means you have no trouble falling asleep when your head hits the pillow. Drowsy, I'm not sure about. I think of this as an environmentally-induced state, perhaps from medication, a boring speaker, or something I used to do a long time ago, in college, when I occasionally inhaled.<br />
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However I defined these terms, it all changed with my cancer diagnosis. I've said before that the body is consumed with a level of fatigue that's hard to describe. Cancer-related fatigue is different than other fatigue such as that experienced by new parents (though equally frustrating having now experienced both). This fatigue lasts longer and sleep doesn't make it go away. For the first time in my adult life, and not as a result of a hangover, I've said "I need to lie down." In the middle of the day. I've not been able to muster the energy to do very simple things such as a crossword puzzle (which I used to do religiously). I read a blog recently written by a man who has been a cancer patient himself and also had a brother who died from cancer. When describing the fatigue that came with it he asked the readers to imagine themselves laying on the couch with their body turned inward toward the seat backing. The TV is on and something is clearly happening that is interesting. You're curious, but don't have the energy to turn over and face the TV to see what it is. That's what cancer-fatigue feels like, he wrote.<br />
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I hadn't experienced anything quite at that level until last week. I'd had a rough week with coughing, which led to increased pain, which led to increased dosages of morphine. This meant I was feeling a lot of that environmentally-induced drowsiness I mentioned above. I found myself going to bed around 9 pm, sleeping right through until about 5 am, taking another pain pill and going back to sleep until sometimes 10 am. Because I am taking a slow-release pill in the morning, and then fast-acting pills for breakthrough pain every three hours, it meant I was also nodding off about every three hours. <br />
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I couldn't read text messages, return emails or even answer the phone because of energy I just didn't have. I went from my bed, to the couch, and back to my bed, for five days straight. By Friday, I'd had enough. I was sick of being tired so I forced myself to go out for lunch with my husband and do some simple errands. I came home and slept for two hours I was that worn out. You'd think I had just run a full marathon instead of my brother (yes, I proudly had to get that plug in for my bro---yay congrats on that again!).<br />
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The reason for cancer-fatigue is often linked to the treatment of the disease---it's a common side effect of radiation, chemotherapy and other medications, such as pain killers. But fatigue can also be a symptom of the cancer itself. According to the American Cancer Society this can be because cancer cells use up much of the body’s energy supply, or they may release substances that change the way the body makes energy from food. Whatever the cause, the result leaves me feeling annoyed and frustrated. I don't like having to say I'm tired all the time. I feel lazy when I can't even do simple chores around the house or outside and I feel useless as a contributor to my household and family. <br />
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People are sympathetic but I know they don't understand how I can be as tired as I am when I haven't done a single thing in five days. I barely understand it so I don't expect others to know unless they've gone through it themselves. So, if you are a cancer patient and know what I'm talking about feel free to comment on this blog. But if you're too tired to do that I totally understand. I'm not being facetious when I say feeling tired all the time is exhausting and sometimes it means not being able to do the things you want to do. Another thing to accept.<br />
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I decided I couldn't aide and abet my already cancer-fatigued body so on Sunday I stopped taking the fast-acting morphine for breakthrough pain. Yes, it meant dealing with a little more pain during the day but it also meant being able to make it through my niece's First Communion without falling asleep (I already felt like I was on the bad side of the priest so I didn't need to add to that) and being able to get back to work this week and start a new contract. Don't be quick to label me with martyr status quite yet though. The slow-release morphine which we increased in dosage is building up in my system meaning I have longer painless time periods during the day. I'll be going over my pain management plan with my doctor this week so we may add something into the mix that has less side effects. In the meantime, while interacting with me, if it seems like I'm more tired, fatigued or drowsy than usual, don't be offended. It's not you, it's me.<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com4tag:blogger.com,1999:blog-118280887704354005.post-7405534919103953952014-04-28T13:50:00.000-07:002014-04-28T13:59:48.856-07:00My Cold Is Laughing at This Blog TitleI'm a somewhat superstitious person so I knew I was taking a risk with the title of this blog and felt like I had to 'knock on wood' each time I read it. Non-superstitious people will just say it was inevitable that I would get sick sooner or later. From whatever side of the coin you want to flip it, the end result is I sit here today, sick with a cold. It's the first time since I started this blog that I had no motivation to write it, so it will be short and sweet.<br />
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When you have cancer, a common cold is not just a pain it can be dangerous. My immune system is already compromised because of the cancer and the drugs I take. Any infection means all my healthy blood cells will travel to the place of infection to try and kill the virus or bacteria that is causing the infection, like they would in a healthy person. But when my healthy cells take a vacation to another part of the body, it leaves the cancer cells free to do their dirty work with no supervision.<br />
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The cough started a few days ago and progressively got worse. A chest x-ray was needed last Friday to confirm that it wasn't an infection and luckily it showed it was just a regular common cold. The tricky part for me is the pain that comes with everything. It's magnified when I cough. It's not impossible, with the state of some of my fragile bones, especially in the rib area, that I could fracture a rib just from a severe coughing spell. Several hours in the ER this morning confirmed that didn't happen but that didn't mean the pain went away.<br />
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Once again, I am so fortunate to live in a community with an amazing health care facility and team. The doctor I saw in the ER this morning is the same one who ordered my x-ray on Friday. When he told me there was no fracture I was relieved, but still frustrated. "What is causing this (insert expletive of your choice) pain?" He took both my hands in his and said, "My, dear, it's the cancer. Cancer is causing the pain." Oh. Okay. Who do I see now that I'm feeling like an idiot?<br />
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I'm never in denial that I have cancer and if you've been reading this blog from the beginning you know there have been a few rough days here and there, but I never expected to be feeling relatively healthy (I spent Saturday night having a blast in a casino) and then just wake up in the morning with unbearable pain. I thought it would come on slowly. I thought I would feel other symptoms first. I thought I would have some warning (my doctors will tell you they have been warning me about this all along). Nope, the ER doc said, this is basically what happens. Because there is spread to my right lung, I always have fluid there, what they call pleural effusion. Surgery last summer has tempered the fluid quite a bit but with the coughing, the doctor said, came inflammation. Inflammation, I've learned, might be the force of all evil when it comes to cancer but I'll save that for another time. Basically, the inflammation, in the pleural lining, and around my chest wall, is causing the pain. The pain could dissipate when the cold does, or it just might be the next stage of pain to deal with, given the spread throughout the bones.<br />
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The solution when the pain increases, is to increase the pain medication. My twice daily slow-release morphine has now been doubled and the fast-acting morphine I've ignored in the bottle for several months I will now be reaching for every three hours, at least for the next few days. This means amping up the daily dosage of other medication that comes with increased levels of morphine. I don't want to provide too much information but let's just say that if you read this post and say "shit happens" well, I can tell you, with morphine, it actually doesn't. <br />
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Add to this the cough suppressant I'm taking and it's safe to say for the next couple days I'll be incommunicado. I won't be responding to many texts or emails or be out and about driving my vehicle, which is actually now considered a weapon with this level of pharmaceuticals in my system. I've always believed in the power of sleep to heal the body, so that's likely what I'll be doing for the next day or two. By this time next week I hope to be back blogging up to my normal standards. Thanks everyone for plugging in each week, providing me with such encouragement and strength. I drew on that to motivate me today.<br />
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Until next time........carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com11tag:blogger.com,1999:blog-118280887704354005.post-49645368837007547282014-04-21T14:47:00.001-07:002014-04-21T14:47:26.273-07:00Tough Pill to SwallowIt's not often I have to do something I don't want to do. Maybe this makes me spoiled or stubborn but I like to think of it more like problem solving or conflict resolution. However, for the past week I've had to do just that because my course of treatment has changed and I am now on a prescription that I don't want to be on. It's literally been a tough pill to swallow each morning for the past seven days.<br />
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After reviewing my scans since treatment started six months ago my oncologist recommended that I switch medications since the one I've been taking was not working well enough. The cancer in my lung has stabilized (good news) and there has been no spread yet to soft organs like the liver or brain (also good news) but there has been significant spread through the bones (not good news). My eye tumour has been harder to assess. It does not appear to have increased in size but there is a lot of fluid around it that is impairing my vision and making it difficult to know for sure whether it has increased in diameter. Both doctors agreed it was time to change the drug protocol. I guess you could say they see eye-to-eye on this issue. (<em>Sorry--</em>sad attempt at #tumourhumour).<br />
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My qualms about taking this new drug stem from the potential side effects that I've read about through my own research and talking with other cancer patients. I knew it was a possibility I would have to take it one day, but that day came sooner than I had hoped. Obviously, the final decision for any course of treatment rests with me. My doctor did not force me to take it nor did he shame/guilt me into the decision. In fact, he couldn't have been more gentle and understanding. It was the first time since starting treatment that I had a complete meltdown in front of him. There have been some teary moments at times but this was full-on-ugly-cry mode. I did not want to hear that I needed to take this drug and in that moment I understood how my kids felt when they were little with colds and I made them take that awful, pine needle-tasting cough syrup. I wanted to go back in time and tell them they didn't have to take it in an attempt to reverse this bad karma moment I was now facing.<br />
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I explained my fears to the doctor and he acknowledged and validated them. For almost an hour he told me stories about other patients, handed me tissues, and, eventually, told me why he was recommending this as the next step. He outlined his A-B-C-D treatment plan for patients with Stage 4 cancer. Step A is what I had been doing and it was not working. Step B meant switching drugs and in six months he'll reassess. If things have stabilized I will stick with Step B, otherwise it's on to Step C which is actually the same drug from Step A but with another drug added to it. Lastly, and hopefully a long way off, is Step D which is intravenous chemo.<br />
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Ultimately, I agreed to Step B, albeit reluctantly (I still don't fully understand why I can't skip Step B and go right to Step C but I do understand the need for order). Some of the side effects of this new drug mimic that of IV chemo such as nausea, hot flashes, weight gain and hair thinning, but those are all manageable and things I've lived with before and can handle again. The biggest concern I have is related to blood clots and stroke. This is an invisible side effect and can hit with little warning and for someone who likes to be in control at all times, this is not a great mindset to have. My anxiety over this didn't get me further than the resident social worker's office. It was suggested I try deep breathing and visualization, but when all I could see was the bold warnings on the prescription package my deep breathing turned to hyperventilating. <br />
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Before leaving the doctor's office he stressed that it was important I embrace this next step otherwise, subconsciously, I could negatively impact its effect by forgetting to take it or taking it at different times of the day. I doubted this would happen. No matter how much I didn't want to take this drug I knew how important consistency was with chemo treatment. Admittedly, there have been mornings I've stayed in bed longer than I needed to just to put off swallowing my morning ritual of meds, but I eventually get up and face the music. I told the doctor I understood and was somewhat offended that he thought I would do anything to sabotage my treatment, unknowingly or not. Then, I forgot to take it on the first day I was supposed to start. On day three, I planned to take it with me when I went out for breakfast but left it at home by mistake and so ended up taking it much later in the day. It appeared there was something to this subconscious scheming after all.<br />
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So, it's been a week today and I've had to take stock. I've had to accept that it's better to be at Step B than Step D. I've had to weigh the risks against the benefits. I've always been a gambler so when it comes to the worrisome side effects I need to believe the odds are in my favour. And, I need to figure out anxiety-reducing techniques that work for me. Ironically enough, the one that is getting me through this week so far is also A-B-C-D-related. My oldest daughter recently sent me a voice recording of my 3-year-old grandson reciting the alphabet. It is the sweetest, purest 20-second sound bite I've ever heard. Since first receiving it I've played it several times, including this morning, right after I took my pills. It made that medicine go down easier than a spoonful of sugar.<br />
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Until next time.......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com4tag:blogger.com,1999:blog-118280887704354005.post-64529771466240883492014-04-14T07:32:00.000-07:002014-04-14T07:32:41.383-07:00Ode to FriendsThe topic of friendship has been popping up in many conversations I've had lately. Having a friend to lean on, talk to, laugh with, can mean the difference between a good day and a bad day. I'm not someone who has many friends but rather a few very close ones that represent the different phases of my life. Since being diagnosed with cancer never have those friendships meant more.<br />
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I met my first friend when I was three years old and there hasn't been a time in the last 46 years when she hasn't been my friend. Our lives headed in different directions and geography keeps us physically apart for years at a time but when we do see each other it's like time has stood still and we're still little girls who like to sing, giggle and be limited only by our imaginations. She reads this blog and is one of the first people to send her encouragement.<br />
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I have another friend I've known almost as long. There was a time in my teens when my life got a little off track. During this time I thought she was someone who no longer fit into the life I wanted to live. I was a coward and wrote her a letter telling her our friendship was over. She wrote me back and basically said she would not accept this 'unfriend' request. She knew what we had was valuable even when I was too stupid to see that for myself. I'm so lucky she forgave me and for as long as I live I will never be able to express how grateful I am to her for that. She reads this blog each week with her daughter and together the two of them have become my greatest cheerleaders.<br />
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When I went away to college I met a large, diverse group of people. It was probably one of the most social times of my life and within that group there was one girl who became my closest college friend. We listened to Bob Dylan and spent endless nights talking about the politics of the world and how we, as young journalists, were going to change things. We also shopped and entered dance-a-thons. We posed for pictures together on graduation day and then lost touch. I didn't see or talk to her for over 25 years but thanks to a brave new world that includes facebook we re-connected a couple years ago. She reads and shares this blog weekly and has been an amazing supporter and advocate.<br />
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When I moved to Walkerton in the mid-80s and was on my own for the first time I became friends with two women who today are still my closest and best friends. I usually talk to one or both of them several times a week. One of them spent some time recently reading through old journals and she came across a poem she wrote for me in the early days of our friendship. It's clear from the start she had insight into my soul that explains why to this day there is nothing she doesn't know about me. When I was diagnosed the first time four years ago, after my family, these were the first two people I needed to tell. I sent them both a text asking them to come see me that night. They both responded within minutes saying they would be there. No questions asked. That's when I truly knew how important their friendship was to me. Of course, one came through the door thinking I was going to say I'd won the lottery and the other was more anxious, anticipating bad news. Their differences are what makes our friendship trio unique. They both read and share this blog weekly.<br />
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Amongst these friends I've mentioned is also a scattering of other women who are treasures to me. They round out my small circle of friends with their unconditional love, support and hugs. So, when I was diagnosed in early 2010 I believed I was set in the friendship department. I was too old to make new friends and frankly thought it would be too much work. I was 44 and felt I had all I needed. But with the diagnosis came a whole new set of feelings, fears and emotions. I had reluctantly been inducted into a new club that came with its own language and rules---one that none of my friends shared or truly understood. As supported and loved as I felt, I also felt very alone.<br />
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Then word got out that I was a new inductee to this club that unfortunately had a solid membership base in the area. I was invited to literally break bread with a group of women who had all been diagnosed with breast cancer. The term 'support group' is avoided because when we meet for supper the last Monday of every month there are times when the word cancer doesn't even come up. But make no mistake, support is the number one thing we provide to each other. It is a sorority none of us asked to join and instead of secret handshakes there are hugs, pats on the back, knowing glances and silent understanding, but above all else, laughter.<br />
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Within this group I was able to make my first new, close friend in almost 30 years. We were around the same age and had been diagnosed within a day of each other. Our treatment cycles were in sync so we talked weekly, if not daily at times. We shared our fears, our thoughts about the future, our complaints about side effects. When January 2011 rolled around we celebrated our one-year survivor mark together and in January 2012 we celebrated the two-year mark. Later that spring, as she was preparing to move into her dream house, life was really looking good for both of us. The back and leg pain she was experiencing was thought to be from too much work related to the move. Then it became worse and she could barely move. And there was that nagging cough that wouldn't go away. By July she was back in the hospital. The cancer had metastasized in her lungs and likely her bones. Throughout that summer we texted nightly, she usually from a hospital bed. She was scared. She had decisions to make that she didn't want to or know how to. For the first time in our cancer-linked friendship I couldn't relate to what she was going through. I felt guilty for my health and helpless in our friendship.<br />
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She passed away in September that year, two days before my son's wedding. The day of the outdoor wedding it poured and poured, but by the time the ceremony got underway, the sun had come out and just as they said "I do" a beautiful rainbow appeared. I'm often skeptical about 'signs' and the presence of life beyond death but I knew in that moment, in that rainbow, she was there.<br />
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Now, two years later, I can relate to what she was going through and I miss the ability to be able to see and talk with her and not feel so alone in this new stage of cancer. I've already lived longer than she did once her cancer returned and so I look at each of these extra days as blessings and a chance to spend time with the friends I still have here with me. I worried that I would feel like an outsider in my women's survivor club because now I had advanced to another rung on the membership ladder, an insider's club of which I was the sole member. I needn't have worried because they've embraced me and supported me as always.<br />
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My other friends help me by simply just being who they are. Some make me smile, some make me laugh out loud. Some know just what to say with their words and others know what to do to pull me out of a funk. They all hold a place in my heart that is intrinsic to my physical and mental well-being. I'm always trying to think of ways to express how thankful I am for each of them and how valuable their friendship is to me, but I'm constantly at a loss for how to do that. I hope this ode to friendship blog helps and I also hope that long after I'm gone I have the power to send them rainbows when they need them the most.<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com5tag:blogger.com,1999:blog-118280887704354005.post-41041852788975136892014-03-31T09:19:00.000-07:002014-03-31T09:19:38.608-07:00Tough Cookie or Just CookieI used to be a lot tougher. Any problems giving blood? Nope. Any issues with claustrophobia? Nope. On a scale of 1-10, with 10 being the worst, please rate your pain: 2, maybe 3. These answers have now all changed to "yep, yep, and off the chart." I might be exaggerating on the last one, but I no longer can trust my ability to assess my own pain.<br />
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These changes can all be traced back to exactly four years ago this month when I underwent my first chemotherapy session. Going into that session I didn't really even understand what chemotherapy was other than it was injected intravenously into my body and was going to make my hair fall out. I thought it was actually the name of the drug used for cancer patients. It's really just a generic term for the treatment of cancer through drugs and the types of drugs and the way they are administered are as varied as the types of cancer and the patients undergoing the treatment.<br />
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I did my treatment at a small, rural hospital that was a satellite location of the larger cancer treatment centre. On any given day I was seated beside men and women of different ages and ethnicity, all living with different types of cancers and at various stages. The common denominator was the compassionate and kind nursing staff that remembered all our names, family history and fears. I came in that first day with only the fear of the unknown, but in a matter of weeks I became anxious at the site of the town's welcome sign and felt nauseous just from the smell of the hospital parking lot.<br />
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The problem is that IV chemo treatment can be very hard on a patient's veins. While I'd never had any issues giving blood (had even donated blood for many years) I became one of those patients. After just two sessions, my veins collapsed and I'm sure Terry's hand almost broke under the pressure of squeezing it through the pain. It was clear we had to take another route. I had a port-a-catheter inserted in my chest cavity, which gave medical staff pain-free access to my veins for the next year. I just had to make sure I got it flushed clean every few weeks and alert airport security whenever I went through the metal detector.<br />
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Though it has been three years since I've had to take chemo treatment intravenously, I still have to undergo monthly blood work and have dye injected on a regular basis when having scans done. The port is long gone, which means a revolving door of nurses and lab techs deal with my rebellious veins that never recovered from the initial chemo treatments. There are some who just seem to have a knack for it and are able to get in and out with little trouble. I don't usually even realize I'm holding my breath until I exhale with relief when I see those talented people enter the room. On other days I've learned that keeping hydrated, keeping my arm warm, and turning my arm inward just slightly, giving the injector the right angle, helps a lot. This may seem resourceful on my part but I still feel embarrassed about the whimp I've become.<br />
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Even needles that are not anywhere near a vein have put a dent in my tough exterior. Only six months ago I was in the ER, waiting for a head scan and a nurse was giving me a shot for pain in my upper arm. "Be prepared," she said, "People seem to have a hard time with this shot and I think it hurts quite a bit." I barely flinched and smugly grinned with self-pride when she commented on my high pain tolerance. Cut to last week and as I'm getting what will be monthly upper arm injections for a bone builder drug, I hear the words "OUCH" (yes, upper case means it was yelled). I look to see who else is in the clinic and come face-to-face with my own big-baby reflection. <br />
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"Uhhm," I stammered. "I wasn't expecting that to hurt so much." She looked at me kindly and I was waiting for her to say, "Oh, yeah, this is the mother of all needles. Lesser people than you have crumbled under its insertion." Instead, I heard, "Well, you have a tan so maybe your skin is a little tough. You should be fine in a few minutes. Let me find you a Scooby-Doo Band-Aid." Okay, I made the last sentence up, but she might as well have said that for all the whimpering I was doing.<br />
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The last blow to my self-esteem came a few weeks ago when I had to undergo an MRI. This involves laying very still on a flat bed while a tube-like encasement slides back and forth over my body (think body-size straw). There is barely an inch of space between my nose and the tube and less than that on all other sides. It lasts about an hour and includes a series of loud banging and knocking noises. I've had an MRI before, as well as several other scans that have a similar set-up, so when asked if I had claustrophobia problems I replied with my standard "nope." Then something happened half-way through the test. I started to sweat, breath heavy and be overcome with a sense of 'get-me-the-hell-out-of-here.'<br />
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I had an emergency call button in my hand but I was damned if I was going to use it. If I couldn't make it through this safe, simple, and much needed, procedure, I was going to be in for a long couple years. I closed my eyes tightly and tried to remember the breathing exercises from prenatal classes I took over 20 years ago. When the technician said I had 30 minutes left I started going through my Harry Chapin song lyric repertoire. I got through two and half songs and was done. (Harry Chapin fans will see the humour in that).<br />
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I'm not sure if it's age or my body just rejecting everything and saying "enough", but it means switching up my game plan now when I have appointments. I used to wear my badge of toughness with pride so I literally have to get used to living in this new, softer skin. There are a long list of things I can take to help with the process. Pain relievers. Anti-anxiety medication. A companion. Shot of tequila. Whatever it takes to get over myself and get on with the procedure of the day I'll do. It's taken me a while to come to the realization that when it comes to getting needles, shots and tests I don't need to be a tough cookie. I just need to get a cookie.<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com9tag:blogger.com,1999:blog-118280887704354005.post-396662760697079782014-03-24T13:03:00.000-07:002014-03-24T13:03:28.320-07:00Raising The Pink BarThere is currently a facebook campaign where women are encouraged to take a 'selfie' without makeup, post to their wall and then nominate other women to do the same. All of this in the name of raising awareness about breast cancer. There was a similar campaign a few years ago but in that case women were asked to post the colour and material of their bra, again to raise awareness about breast cancer. While the intent behind this most recent campaign is a worthy one, the idea itself, much like my bra in the previous campaign, is a bit of a stretch.<br />
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I think what this current campaign does raise awareness about is inner versus outer beauty, which is always a good thing, but beyond that I'm confused about how it contributes to breast cancer awareness. One of my facebook friends took her nomination and instead of posting a make-up-free selfie, posted a chart of visual symptoms of breast cancer. This makes more sense to me, but let's face it, if there is one disease that does not need help in raising awareness it's breast cancer.<br />
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You can hardly walk into a store without finding a tool, appliance, piece of clothing or food package that does not have the pink ribbon emblazoned on it. This means the company that makes the product either supports breast cancer initiatives, donates a percentage of the proceeds from the sale of the item to cancer research, or both. While the pink ribbon campaign has successfully raised awareness, along with billions of dollars, there is actually very little to show for that money in terms of learning the cause and prevention of breast cancer. Until we do that, no walk, run, swim, or anything-a-thon is going to find a cure.<br />
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Breast cancer awareness month is in October where everything from Niagara Falls to the Parliament Buildings is lit up in pink, new pink products are launched and there is a <em>"fill in the blank" for the cure</em> every weekend. During this time we hear about how much money has gone into or been donated to breast cancer research but we hear little about what research has actually been done. And, what few people realize is that only a small percentage of this money is spent on metastatic (or stage 4) breast cancer. No one dies from primary breast cancer and yet this is still where awareness, funding and research is focused. <br />
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One day of the whole month of October is designated as Metastatic Breast Cancer Awareness Day. There is no research being funded that I could find that looks at what kinds of cancer metastasizes, why it metastasizes, and how it can be prevented. In Canada, 10% of the almost 24,000 women diagnosed annually with breast cancer will go on to be diagnosed with metastatic breast cancer. Around 97% of those will die from it, most within the first five years of diagnosis. Despite all the awareness and money raised we don't know why this happens or how to prevent it. None of the brochures, websites or videos that I looked at when I was initially diagnosed mentioned metastatic breast cancer. Now that I have it, it's even harder to find information, especially anything Canadian-based. The few groups that do exist to provide support and information about breast cancer metastasis call this the <strong>'elephant in the pink room.'</strong><br />
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<em>Pink Ribbons Inc.</em> is a documentary worth watching if you want to learn more about the breast cancer awareness-raising culture. You'll learn that some companies spend more on the advertising of their breast cancer support than they do on what they donate. It's a feel-good cause that everyone wants to be part of and advertisers have jumped on that from the beginning. The documentary talks about the warm, fuzzy, pretty aspect of 'thinking pink' when in reality there is nothing comforting or pretty about breast cancer. You'll learn about some cosmetic companies who are amongst the largest breast cancer awareness sponsors and yet have products such as nail polish, hair dye and make up that contain chemicals linked to cancer (perhaps going make-up free is not a bad idea).<br />
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Even knowing all this I still find it hard to know what to do about it. I have golf balls, t-shirts and calendars that all have the pink ribbon stamp. For me and my family it is not a universal logo of awareness or fundraising but a symbol of the disease I am living with (not dying from). My youngest daughter designed her own beautiful tattoo that incorporates the breast cancer ribbon so that she can be reminded daily of the challenges we face as a family but also of the hope we have in our future. For these reasons the pink ribbon will always stand for something that should never be dropped from public consciousness. <br />
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However, I do make decisions differently now, with an eye on how I can do my part to raise awareness and funds about the stage of breast cancer that doesn't get talked about enough. When shopping, if I come across the same item for the same price and one has the pink ribbon on it I am still more apt to buy that one, but I am also more apt to email the company later with some questions. I might ask them exactly what research has been funded with their donated money and I will definitely encourage them to consider earmarking their funds towards metastatic breast cancer. I've stopped donating to the countless events to end breast cancer because I know that we'll never end breast cancer until we figure out how to stop it from metastasizing. To do that we need to have events that focus on raising awareness and money about that. One such event was held in Paisley last fall---a grassroots evening of music called 'Dancing With Elephants' where I was fortunate to meet a new friend and someone who is also living with metastatic breast cancer. I hope that event will continue to be an annual one and will be one of many more I can support.<br />
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For those also skeptical about where their donated money is going when they write cheques to large foundations or events, keep it simple by keeping it local. There are so many cancer patients in our own community who can benefit from the generosity of your time and money. You can volunteer to drive them to treatments and appointments. Gas cards to help with travel expenses or gift cards to a local pharmacy are also a good idea. Some drugs may be covered by the government or private insurers but there are so many additional over-the-counter items such as pain relievers, mouth washes, stool softeners, lozenges and special creams that add up and can be expensive.<br />
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In terms of raising awareness the best step for me is to continue to do the research, find the facts and bust the myths. When I do I'll keep sharing them. I want to continue to keep seeing all your beautiful, freshly-scrubbed faces on my timeline, but before posting perhaps add one fact about breast cancer that you want to share with others. That can go a long way to raising the awareness that needs to be raised. We don't need to start from scratch or create a different campaign or coloured ribbon. We need to build on what's been successful but start being more strategic and directing funds and awareness in the right direction. It's time to raise the pink bar.<br />
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Until next time.....carry on.<br />
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<br />Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com4tag:blogger.com,1999:blog-118280887704354005.post-29824712972109216332014-03-17T08:27:00.000-07:002014-03-17T08:34:40.883-07:00LuckyHappy St. Patrick's Day! As my dad always said, "If you're lucky enough to be Irish then you're lucky enough!" I am lucky enough to be Irish and thought I would use today's blog to share some of the other things I feel lucky about.<br />
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This month marks nine months since I was first diagnosed again and six months since I started treatment. My oncologist told me back in August that he couldn't predict how long I had but if I didn't do anything to treat the disease it could be as short as nine months. So, I feel lucky that I had options for treatment and I'm still here to write about it nine months later. Last week my six-month scans showed that there has been no further progression of the disease in my lungs and so far no progression of the disease in any of my vital organs. I feel really lucky about that.<br />
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In the last four weeks I have had several types of tests and refilled a whole whack of prescriptions---all without being out of pocket one dime. I know I pay high taxes to have access to the health care I do but I feel lucky to live in this country. And, while I do pay premiums to have the private insurance coverage that I do, I feel lucky that it covers the very expensive daily and monthly drugs that I need.<br />
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I feel lucky to have the extended family that I do, all of whom are spread across the country and around the world so are likely in different states of celebrating our Irish heritage today, but as my son told me this morning---we're all Irish today and all hungover tomorrow!<br />
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Speaking of my son, I feel so lucky to have the four children I do. I only gave birth to one and I have joked in the past that I sometimes forget which one, but truth be told I see a little bit of me in all of them and more than that I feel all of them in me all the time. They were all born in my heart and are my inspiration for getting up each day to face whatever is thrown at me. The same goes for my two grandsons and for the yet unborn grandbaby on the way whom I already love to pieces.<br />
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I feel lucky for my own family that includes a mother with a heart as big as Ireland and a brother and sister whom I'm lucky enough to also call my friends. I have in-laws that make the circle complete and nieces and nephews (and one adorable great-niece) who make me proud and teach me something every time I talk with them. I was very lucky to have a father who taught me more things in the 42 years we had together than I have room to list here and whose presence I still feel with me every day. He also gave me the best gift I've been lucky enough to receive which was a group of aunts, uncles and cousins who literally made me the person I am today and who make me smile just by the mere sight of their names (thank you email and facebook for that!).<br />
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I don't know if I can express how lucky I feel to have the husband I do. He has cried with me through every bit of bad news I've received and cheered with me for all the good news. He never gives up on me even when I push him away and am very hard to love. He's always trying to make me laugh, never likes to let go of my hand and, despite his grumpy mumblings about the Irish, was the first to squirt some green food colouring into his beer yesterday--and I know he did that just for me.<br />
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I have best friends I talk to almost every day and lifelong friends who I've known for decades and decades. I have new friends who I met <em>because</em> I was diagnosed with cancer so I feel lucky to see the silver lining in that. I have a support system that grows bigger all the time and I am constantly overwhelmed by people's thoughtfulness, generosity and compassion. I don't think anyone realizes the amazing impact it has every time someone takes a few minutes out of their life to reach out to me, even with just a couple simple sentences and I feel extremely lucky about the frequency with which that happens.<br />
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I'm not ashamed to throw in a few superficial, materialistic things I feel lucky for like the Internet, a well-made Caesar, a great pair of black jeans, a good hair-cut, a reliable car and the words 'all-inclusive'.<br />
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Finally though, on today, March 17th, 2014, I feel lucky that I have the strength and skills to sit at my desk, with the sun shining in, surrounded by pictures of people and places I love, and write words that may inspire others but definitely contribute to healing me. Is it luck that allows me to do that? I'm not sure. I'll always take luck, but never lean on it. My thoughts about luck are best summed up by this quote from Thomas Jefferson--"I'm a great believer in luck, and I find the harder I work the more I have of it.” <br />
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Until next time.....carry on. Slainte!<br />
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<br />Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com0tag:blogger.com,1999:blog-118280887704354005.post-88741556413692600952014-03-10T15:38:00.000-07:002014-03-10T15:38:07.901-07:00Pity PartyThere are some days when cancer kicks my ass. There are other days when the treatment of cancer kicks my ass. Then there are days that are both. When those days come the difficulty is compounded by the fact that many of the typical stress relievers that were sought in the past are no longer an option. What's a girl to do? I ate a whole pie and watched endless episodes of the Kardashians. <br />
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Since I started writing this blog I've been overwhelmed by the positive response. People have gone out of their way to send me private messages, emails and cards. If I have inspired or educated anyone I am humbled and happy for that. However, if I've given anyone the impression that I don't have a good old-fashioned pity party every once in a while then I apologize. I have definitely misled you.<br />
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I don't have them often and when I do I try not to make them last long, but damn I get the most out of them. I crawl into bed and sleep for hours. I wake up to cry, sometimes eat (pie), watch mindless TV (see paragraph one) and then go back to sleep. My diagnosis and prognosis suck but I think about that as little as possible--until the limitations of it smack me in the face and prevent me from doing things I need and want to do. Then I get frustrated. Then I get angry. Then I cry. An ugly cry. Lamenting about how much I just want to be normal and do normal things. There are so many days when I feel normal, when I forget I have cancer, and I try and do those regular day-in and day-out tasks only to realize I can't. That's when the party invitation goes out. <br />
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For example, when people I love and care about need me, I want to be there for them and with them. But that sometimes means driving distances that I no longer feel comfortable with due to the metastasis in my eye. It means trying to be supportive and not feeling authentic because I'm not feeling 100% myself. It means giving a hug, that if returned too tightly, can leave me with back pain for days.<br />
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As unbelievable as it might sound I also get upset when I can't do normal housework and chores,like bringing in firewood. We rely on a wood stove for our main heat source in the winter and there is nothing I love more than starting my morning off in front of the fire with a tea and the newspaper (or my Twitter feed). On days when I can't manage to carry in wood it means letting the fire burn out. The sound of the furnace coming on is like a mocking voice purring out my failures. <br />
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I need to stress that I have no lack of people in my life who would be here in a heartbeat (and have been) to bring in wood or drive me where I need to go. My husband spends all his days off ensuring I have everything I need and more. What I struggle with is the fact that I need the help. If it hasn't been obvious in previous posts, I am a controlling, fiercely independent and private person. I'm not so vain or stupid that I would suffer rather than ask for help but it's the fact that I'm in a position that I need to ask for that help that brings out my inner Bridget Jones.<br />
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Before cancer, if I was having a bad day, I would pour myself a big glass of Pinot. Hell, I'd do that if I was having a good day. Alcohol and chemo just don't mix and for the most part I'm okay with that. I've come to acquire a taste for the fake beer when I'm socializing with friends. I was able to keep down champagne on New Year's Eve and even a few shots of tequila when I was on holidays, but wine, or any alcohol on a regular basis is a no-go. It's hard to describe the feeling that even a less potent, oral chemo drug leaves you with but I liken it to being in a constant state of feeling like you might be getting the flu. Not quite down for the count, but slight nausea, irregular bowels and a general feeling of achiness and exhaustion. So wine is out and I have to say of all the things I've lost to cancer, including my hair and my dignity, I miss wine the most. <br />
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Then there's smoking. I haven't been a daily smoker in years and years and quitting smoking was probably one of the hardest things I ever did. I remember once having a conversation with someone about smoking and how it continued to be a regular craving for me. I boldly said that if I was ever diagnosed with a terminal disease and was assured there was nothing that would cure me then I would start smoking again. What would I have to lose, right? Cut to 2014 and while I would be lying if I said I wasn't tempted I just can't do it. I've taken a few puffs and even smoked a full cigar on my wedding renewal night, but if I picked up the habit again I know the guilt would kill me long before the nicotine.<br />
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So what stress relievers are left? I'm trying to eat as healthy as possible so that eliminates a junk food binge. I don't like talking on the phone so that takes away endless chatting with friends and family. The metastasis in my bones makes long walks and the treadmill things of the past. The eye tumour makes reading for longer than 15 minutes a struggle. Wow...we got this pity party started now!<br />
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Then I remember music. Music has always soothed my soul. And I remember Skype. The miracle app that makes it possible to see and talk with the ones I love even when I can't be there physically. Writing this blog helps. My son and daughter-in-law have managed to find me some half-decent fake wine. And there's pie (the healthiest, non-healthy junk food I can find) and the Kardashians. 'Cause there's nothing like watching a train wreck that makes you forget about the wild ride you're on.<br />
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I'm glad these pity parties are few and far between because they are emotionally draining, but I've come to accept them as a necessary evil. These are the days I allow myself to not be so tough. These are the days when people say, "Hey, what doesn't kill you makes you stronger!" and I respond with "No, sometimes what doesn't kill you, just doesn't kill you."<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com2tag:blogger.com,1999:blog-118280887704354005.post-63804080078363751632014-03-03T14:54:00.002-08:002014-03-03T14:54:55.601-08:00Hindsight is 20-20On December 16, 2009 I was taking a shower before going to bed when I felt a lump on the left side of my left breast. I am not a hypochondriac. As the title of this blog implies, I don't get sick very often. I don't automatically think the worst of every situation. I do have strong instincts. I knew it was cancer. I was even more convinced after I did the one thing I'm sure most doctors dread hearing--I googled it. The lump was about 2 cm wide and long, was hard, but not painful, and it didn't move. All signs of a breast cancer tumour.<br />
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This was indeed confirmed a few weeks later, just into the new year, after a mammogram, ultrasound and biopsy. It's important for me to note that had I just stopped at the mammogram the rest of 2010 would have played out quite differently as I was told it wasn't anything significant and it should be checked again a year from then. I didn't settle for that, and luckily neither did my nurse practitioner, so I pushed for the ultrasound. Less than a month after finding the lump I had surgery to remove it along with some lymph nodes under my left arm. The results showed the cancer had spread beyond the breast into the lymph nodes and that I had an estrogen positive, stage 3 tumour. That led to 12 rounds of chemo and 25 radiation treatments.<br />
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At the end of that long year I sat in my oncologist's office where she told me three things:<br />
1. She wanted to me to take a daily dose of Tamoxifen, often prescribed to pre-menopausal women to help prevent breast cancer recurrence.<br />
2. The nodules that showed up in a scan of my lungs 10 months previously were still there which she said meant it wasn't cancer or they would be gone as a result of the treatment (likely scar tissue from some previous infection, she said).<br />
3. She would see me in five years. <br />
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I felt a little shell-shocked. Five years? How would I know the treatment had worked? She told me my family doctor would monitor me and she would send her a letter of things to look for over the next five years. I accepted that and in the process ignored that little instinctive voice in me that was saying that didn't sound right.<br />
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People may be surprised to know that during my first diagnosis I did very little reading or research about breast cancer. I don't think it was because I was complacent. I think it was because I was in shock, probably in a lot of denial, but mostly because I was just very tired. There is a kind of fatigue that comes with cancer that is very hard to describe.<br />
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The only research I did do was near the end of my treatment about the drug Tamoxifen, knowing this was something my oncologist was likely to recommend. Terry and I both reviewed the research and made the decision that I would not take this drug, even if that was the doctor's recommendation. We had a variety of reasons but mostly it had to do with the potential side effects. At that time, our family was going through another health crisis with our youngest daughter. It was important to us that I be able to focus on getting her healthy. If the side effects from the drug were anything like the ones I experienced from chemo there was no way I was going to be in any shape to help anyone. I was also drug-fatigued. After almost a year of doctors, needles, pills and procedures I just wanted some time off from it all. I asked the oncologist if I could wait three months and then start taking it. I was told no, that it wouldn't be effective if I didn't take it within weeks of completing chemotherapy. So I didn't take it.<br />
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I asked nothing about, and was offered no information on, breast cancer metastasis. I knew that there was a chance the cancer could come back but I didn't understand that if it did it was called metastasis (mets for short) and that it would be incurable. I didn't know that it does metastasize in about 30% of breast cancer patients. I didn't know that the only people who die from breast cancer are those for whom it has metastasized. I naively thought that 'cancer spreads' and if that happened to me the treatment process would start over and I would, once again, do what it took to beat it. I didn't know that cancer metastasis couldn't be beaten.<br />
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I also didn't know that I could have requested blood work as often as I wanted that could measure the levels of CR15-3 in my system. These are tumour markers that when elevated don't always mean there is new cancer activity but it can give the doctors a heads up to do more tests. I did end up seeing a radiation oncologist every six months for the next couple years, arranged through another doctor who felt I should have more specialized follow up care. Those follow up exams consisted of a breast exam, blood work (once) and a chest scan that I requested. That chest scan still showed nodules in my lungs but everyone, including me, accepted what the oncologist had said---if it was cancer they would have disappeared because of the systemic chemotherapy treatment I underwent. What I wouldn't know for another two years was that statement was only true if the chemo actually worked on my body. I know now it didn't. Hindsight.<br />
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A lot of cancer patients and their families get caught up in the 'cancer can be beaten' and the 'think pink' campaigns. I'll get into this more in a future blog but the marketing has us belief that once we make it through the treatment, and our hair grows back, that we are survivors. We wear the pink ribbons, we participate in Relays For Life, and we excitedly count down each year until we can say we have made it to the five-year of being cancer-free! At some point during my treatment I asked the oncologist what anniversary date I should use to count down to the five-year mark? Is it from diagnosis? Is it from the last day of treatment? I was told it should be from the day of my surgery to remove the tumour. Basically, she told me, they assume they have gotten the cancer when they do the surgery and everything else they do after that is a preventative, proactive measure. They hope the chemotherapy and the radiation kills the cancer cells that may still be around where the tumour was and in other places. Hmmm. Like it was in my lymph nodes? I didn't ask.<br />
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I celebrated every January 16, the anniversary of my surgery. I did that three times. Then, late last spring, I couldn't breath anymore. The doctors didn't say I had cancer that had spread to my lungs and now they needed to come up for a treatment plan for that. They said I had stage 4 metastatic breast cancer and there was no cure. They said they would treat me with a less aggressive form of chemo so that I could be pain-free and comfortable for as long as possible. On that very day, a day when I was basically given a timeline on my life, I took control back of it. I switched to a new oncologist and a new cancer clinic. I immediately started to do research and I asked a million questions.<br />
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Since then I've learned that taking the Tamoxifen would not likely have helped me because my body was obviously resistant to treatment. That doesn't mean I made the right choice in not taking it, but it does mean I feel less guilty about not taking it, knowing now what I didn't know then. (My new oncologist also said he would have let me start at a later time, even if there was a risk of it being less effective, which by the way he didn't think there was.)<br />
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I also have learned that those nodules in my lungs, found right at the very start, were very likely cancer, the same cancer that grew to the point that made it difficult to breath three years later. The fact they were still showing up on scans after treatment was completed was a sign the treatment didn't work. Would it have made a difference back then had I known enough to ask for a lung biopsy to confirm one way or another if they were cancer? I don't know. No one really does. Hindsight might be 20-20 but it has no psychic abilities. The bottom line is I don't likely have cancer that reoccurred, I have cancer that probably never left. <br />
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I don't know what the future holds for me, but I know it will be full of blood work looking for tumour markers, scans any time I feel I need them, and a binder full of questions that I prepare before each doctor's visit. I know medical professionals are not infallible and I no longer treat them like they are. I'm not afraid to be thought of as over-sensitive, paranoid or stupid. Every person's cancer experience is different. This is mine and only applies to me. The only advice I ever give, when asked, is don't be afraid to ask more questions, demand more tests or get a second opinion. It might not change your outcome, but you have nothing to lose.<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com4tag:blogger.com,1999:blog-118280887704354005.post-54028599612685999852014-02-24T12:35:00.000-08:002014-02-24T12:36:46.889-08:00Til Death Do Us PartYou know those stories you hear about women on their deathbeds making their husbands promise that they will remarry? Some women even go so far as to try and find that future wife for their husband before they pass away. You've no doubt cried and shook your head in amazement like I have at these most unselfish and loving of wives. Yeah, I'm not one of those wives.<br />
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I do not want my husband to remarry after I pass away. There I said it. He's been married. Twice. The last 24 years have been to me but he has been married all of his adult life. Marriage is hard work. What I want for him is a break from all that.<br />
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I only came to this realization in the last few months. I was lying in bed, listening to him sleep and thought about how life has changed so drastically for him since I've been diagnosed. His role has changed from husband to caregiver. He has seen me at my worst and yet is always trying to make me feel my best. He has sacrificed his time, his hobbies and his needs because of me. It occurred to me that perhaps this is why so many men often jump into another marriage or relationship quickly after their wives have passed away from a terminal and debilitating disease. They may be longing for a life of normalcy that has been missing for the previous months or years. They likely just want to be able to hug someone without causing physical pain. Or to be able to express their anger without feeling guilty. Or to travel without restrictions. Or to look at a kitchen counter filled with dirty wine glasses instead of prescription bottles. Or to laugh. Or to stop being worried all the time.<br />
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I would completely understand if this is something my husband wanted to do after I'm gone. I still don't want him to do it. I want him to have the freedom that comes from no longer being a caregiver or a husband. Something he has never experienced. I want him to be able to eat what he wants, drink as much as he wants, watch all the wrestling he wants---all without the nagging or evil stare of a wife. I want him to spend all his summer days in a boat fishing if that's what he wants to do. I want him to hunt across the province and country all fall if that's what he wants to do. And, to have him tell it, I want him to be able to do something he says he hasn't been able to do in almost 25 years--fart.<br />
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Won't he be lonely, you might ask? People would actually be surprised to learn how much my husband enjoys alone time. He likes hours of uninterrupted silence which is far and few between around here. But I also know there will be no lack of friends who will visit, giving him the audience he craves for his stories, jokes and gossip.<br />
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What about sex? What about it! all four of my kids are screaming right now as they hurriedly try to log off whatever device they are currently reading this on. Terry is an attractive, funny and charming guy so I know he'll be okay in that department. What about companionship? Someone being his 'plus 1'? Unless it's one of his kids or grandkids getting married I think he'll be happy to have an excuse to not have to attend another wedding or gala event.<br />
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I know it's unrealistic to expect him to not fall in love again and I want him to have someone should he want to take a trip, go to the movies or just have a drink with on a Friday night. And, if this was happening 20 years ago and he had young children still to raise it would be a whole different scenario as I would definitely want him to have a partner in that. But he's not 25 anymore and we have no children living at home full-time. He deserves to have time with himself, to be accountable to no one and to do whatever he wants---that's my wish for him after I'm gone.<br />
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Last week, while on vacation, we renewed our wedding vows. It's something I've always wanted to do (see previous post on bucket lists) and something he's always resisted. This time he said yes. It was a beautiful and emotional ceremony with all our children present. He jokingly said, "There, that's done. We don't have to do that again." In all my selfishness, I agreed. I never want him to say those words again to anyone. I was not his first wife, but I want to be his last. <br />
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The irony is that once I'm gone he gets to stop doing something else he's had to do for almost a quarter of a century---listen to me. He may very well choose to marry again and I can't do anything about that (as far as I know now). Ultimately, all I really want for him is happiness--for as long as he shall live.<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com8tag:blogger.com,1999:blog-118280887704354005.post-82281417875221869902014-02-10T16:46:00.001-08:002014-02-10T16:46:46.795-08:00Bucket ListI had a bucket list long before I had cancer. In fact, I had a bucket list long before they were called bucket lists. I wrote mine around the turn of the century (I've always wanted to say that) and back then we called them goals. About 80% of my list is travel related and most of the rest is a list of concerts I want to see. Throw in the odd 'publish a book' and 'run for an elected office' and I think it's a pretty well-rounded list.<br />
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Months, and sometimes years, have gone by between checking in with the list so when I looked at it last fall I was pleased with the number of things I have been able to accomplish. Since then I've checked off a few more items. Terry and I spent 10 amazing days on Vancouver Island in September and in November my best friends and I saw Garth Brooks in concert in Las Vegas. It must be stated that the latter item was all about Garth Brooks. Yes, it was a bonus to have a girls' weekend in Las Vegas but had he been playing in Moose Jaw that's where we would have been going.<br />
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I take nothing away from the joy of crossing so much off my list, but some of the most wonderful things that have occurred over the last few months have been surprises and experiences that occurred based solely on impromptu decisions. Just after Christmas a group of women, who at one time were colleagues and now are friends, travelled to Walkerton to treat me to a spa morning followed by a leisurely lunch. The day was full of laughter and great conversation. A few weeks earlier I was told to just keep that day open and I did, no questions asked. Well, a couple questions were asked. I did need to make sure that I would be physically able to partake in what the day held but other than that I just went for it.<br />
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More recently I made plans to spend the night in London at my youngest daughter's place and she invited me to come along with her to a university psychology class. I consider myself a lifelong learner and so I was thrilled to have the opportunity to sit in an environment of higher learning and take it all in. I left there wishing I could do the next week's assignment. (So did my daughter by the way.)<br />
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I'm well aware that these unexpected events likely would not have occurred had my cancer not returned. Not that the intentions wouldn't have been there but the motivation to make these things happen has increased in the people who love and care about me, due to my prognosis. And I'm okay with that. I told the ladies over that surprise lunch that nothing says you're dying like people coming together to do something nice for you. I realize that might make some people cringe but it made them laugh and that's why they're my friends. And the invite to attend my daughter's night class? This was from the girl who never wanted me to come on one field trip all through elementary and high school. I know it's different now that we're both adults but I also know it was really important to her to make this happen for me.<br />
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The lesson I take away from all this is that while it's great to have goals and bucket lists, it's even better to just open myself up to the possibilities of things I can't even imagine to write on a list. I have always been a planner--"the organizer". I make things happen for other people. Things don't happen to me unless I make them happen. Slowly I've started to change that. I've learned to say yes a lot more and I've learned to say no a lot more. I no longer do things that will take up energy I don't have, but I also agree to do more things that are out of my comfort zone. I somewhat regret that it took my cancer recurrence to bring about this change because despite what the song says it's not easy to live like you are dying when you are actually dying. The pain of the disease makes it difficult to run with the bulls and the fatigue from the medication makes it hard to jump off the couch let alone an airplane.<br />
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For the most part though I don't have regrets about the way I lived my life bc (before cancer). My former control freak self was responsible for a lot of great things that have happened to me. It enabled me to have the career, home and family I now have. It's the reason why so many things have already been crossed off my bucket list since I wrote it over 14 years ago.<br />
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My priority now is making time to spend with my family. That was always important to me but now that influences almost every decision I make. Which is why, even though I will remain open to the unexpected and the unplanned, there is one item on my bucket list that I am so thrilled about being able to soon cross off. Terry and I are heading to a sunny destination soon with all four of our kids and their partners. A family vacation of this magnitude is something we've never been able to pull off and it's a dream come true for me. Even though it has been on that list of mine for many years I was starting to doubt whether it would come to be. Luckily, my children didn't. <br />
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For the last several months they have been scheming and planning this trip and finally told me about it just before Christmas. True, it will be different from the kind of trip I envisioned when I first wrote it down. I may have to watch them play beach volleyball from my lounger instead of joining them. I may have to call it a night long before the disco closes. And, I may have to do mango shooters instead of tequila ones, but the bottom line is we will all be together creating memories that will last everyone's lifetime.<br />
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Sometimes you have to plan and organize to make wishes come true and sometimes you just have to hand that bucket list over to fate. It's very cool when it comes as a complete surprise to be able to check something off your list.<br />
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Until next time......carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com4tag:blogger.com,1999:blog-118280887704354005.post-64312113183944164592014-02-03T16:21:00.000-08:002014-02-03T16:21:07.948-08:00What to say or not sayA few weeks ago I posted a link on my facebook page to a short video called "Metastatic Breast Cancer: Dumb Things People Say." I wasn't crazy about the title but I posted it anyway because I thought it brought attention to the fact that a lot of people don't know what to say when they hear you have cancer, especially if i<span style="background-color: white;">t's</span> terminal. When they do say things that are inappropriate I think it's more from a lack of understanding than it is from a lack of brain cells, which is why I don't like the word dumb. From reading the intro to my blog you'll have learned that I also don't like the words battle or journey. <br />
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When I hear the word battle I automatically hear the words 'winner' and 'loser.' I envision warriors, scenes from Braveheart, and battlefields full of the bad guys laying defeated on the ground. If you are a fighter in a cancer battle and you lose does that mean you're the bad guy? Or just that you weren't a good enough fighter? Does it mean you weren't strong enough or that you gave up when you saw that you were losing? Not to me. I avoid that word so that I can avoid that image. The word journey is at the other end of the spectrum for me--a peaceful trek to a beautiful place where you send postcards from. I want to journey to Italy, the Florida Keys or anywhere Bruce Springsteen is performing. I don't want to journey through, or to, cancer. I don't want to say to anyone, "<em>wish you were here."</em><br />
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After I posted the video link I had several people contact me and say they were grateful I had because it gave them insight into what to say and what not to say. Even a few people within the health care field, who come in contact with cancer patients on a regular basis, told me the video was helpful to them. Until then I had been debating about whether to write a blog or not but the feedback I received after posting the video sealed it for me. People were eager to learn how to talk to people with cancer.<br />
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After my first post, a reader, who also has cancer, posted a comment saying she disliked the word strong. I, too, remember when I was first diagnosed people would use that word with me a lot. "You're strong, you'll get through it." "I admire your strength." "You're the strongest person I know." <br />
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I wondered what defined me as being strong in their eyes and what would they have said to me if I wasn't perceived as strong---"Sorry, you're so weak. I guess you don't have a fighting chance, eh?" Or worse, would they have just said nothing at all? If they saw me fall apart, as I often do, would they think less of me? Many days I don't feel strong. However, I also love the quote "You never know how strong you are until being strong is the only choice you have." I know that strength is the best word to use to describe any cancer patient's ability to keep going in the face of pain and fear. I have a love-hate relationship with the word strong.<br />
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I remember being in my kitchen one day with an extended family member and just starting to cry. She hugged me and said, "That's the first time I've seen you break down." I realized that perhaps my strong veneer was sending the wrong message that I didn't need or want support. A few months later I was not doing well at all. I was alone in my bedroom and my husband, son and neighbour were outside. I ended up having to send someone out to get my husband and he rushed me to the hospital where I was admitted for an immediate blood transfusion. In the chaos of people running upstairs to get me I remember seeing my son and trying to hide my pain and tears from him. I could see the fear in his eyes because he had never seen me like that and, despite what was happening to me at that moment, my instinct was still to protect him from seeing me like that. Later, I understood that I wasn't doing anyone any favours by shielding them from the reality of cancer and my situation--by being strong. I still find it difficult to be vulnerable or 'weak' in front of people, but I'm working on it because it's their strength I need to draw on to get me through.<br />
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Strong, weak, battle, journey....they are all just words that are without power until we assign it to them. I can get offended or I can try and see that people are just grasping for something to say so that I know they care and are thinking about me. When people tell me they are praying for me, I take comfort in that and it doesn't matter whether I pray myself or even if I believe in God because it is their intent that brings me solace. I have had countless people tell me that they are here for me if I need them and then they go on to tell me exactly what they will do for me (which really helps me to know that they are being sincere and authentic). I've had people offer to drive me to appointments and treatments, to cook for me, to do my gardening, and even to clean my toilets (from someone who admitted she didn't clean her own toilets but she would clean mine if that's what I needed!). All of these offers make me feel so fortunate, even if I never take anyone up on them.<br />
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Sometimes though, no matter how well intentioned someone's words are, what comes out is, well, I don't know...is there a nice word for dumb? <br />
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After I had lost all my hair from chemo I was at a summer BBQ. It was hot and I rarely wore a wig. A friend of a friend, who obviously wasn't in the loop about my situation, pointed at my bald head, gave me the thumbs up and said "Cops for Cancer?" I smiled and replied, "Nope, just cancer." Needless to say, there was an awkward silence and he moved on and my friend and I just started laughing. I did feel bad for about a minute that I didn't try to make him feel better for his faux pas, but sometimes I'm just not that strong.<br />
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So even in the face of something inappropriate I try to find humour. The bottom line for me is there is no wrong thing to say. If you have questions, ask away. If you want to keep me in your thoughts, please do. If you are struggling with what to say, just say that.<br />
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Until next time......carry on.<br />
<br />Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com7tag:blogger.com,1999:blog-118280887704354005.post-11523532154726914422014-01-27T12:04:00.001-08:002014-01-27T12:04:34.723-08:00Treatment decisionsOne of the first things my husband Terry said after my oncologist told us last summer that the average lifespan for women my age with stage 4 metastatic cancer was 4 years was, "A lot can be discovered in 4 years." He's an optimist. I am not. I'm not a pessimist though either. I'm a realist. A pragmatist. I needed to have all the information and then I need time to reflect and come up with a plan that will be best for me. (Sounds like I'm also a narcissist)<br />
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The first time around chemo was not good to me, as it often isn't. I was given aggressive types and doses because I was deemed to be young and healthy and my body could take it. I ended up with two blood transfusions, a case of pneumonia, severe bowel issues and a couple hospital stays. When my 12 rounds were completed I was so glad to have that behind me. I understood then why some people refused to undergo chemo and I rather cockily said if faced with that decision again I would turn it down as well. Easy to say when you really don't think you're ever going to be faced with that decision again. But suddenly I was.<br />
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Because there is currently no cure for stage 4 metastatic cancer (there is for other types of stage 4 cancer but that's another blog) doctors don't recommend aggressive treatment. The goal of treatment this time around is to slow down the spread thereby giving me more time and to relieve pain so the time I do have left is as comfortable as possible. It's not as high a dosage or harsh a drug, but it's still chemo and I was still scared. For about a week I did research on alternate methods of treatment. I talked to people who were doing holistic treatments and I read success stories online that included a variety of homeopathic ingredients. People were being cured it seemed by everything from tea to marijuana. At the end of one long day of research I was convinced that I could be cured just by a drastic change of diet. During this time there were also a lot of discussions with my husband. Always supportive, Terry said the final decision was mine but I could tell he was worried about what that decision would be.<br />
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Then one day I got a call from a dear family friend. She was the same age as me and had been diagnosed with cancer as well. It wasn't the same type as mine but it had metastasized in several of her organs. She was doing chemo as well as any other kind of medical intervention she could learn about. Doctors had given her less than a year when she was first diagnosed and here we were talking, five years later. She was blunt and had a long list of questions I was to ask and procedures I was to demand of my oncologist. I had known this woman most of my life and respected her greatly. She had always been an active, physically-fit person who ate well and took good care of herself. Before we hung up she said something I'll never forget. "If a good diet and exercise prevented or cured cancer, I would never have gotten cancer." She was right. I thought about other people I knew who had been diagnosed with the same cancer as me and they were also people who had lived very healthy lifestyles.<br />
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The truth is we don't know why some people get cancer and why some don't. Why some people can smoke and drink and never get it and others who never imbibe do. We know there are some triggers and some things that make people more predisposed. I had been feel terribly responsible for my own diagnosis, almost like I had deserved it, because of the lifestyle choices I had made, but I decided right then I wasn't going to do that to myself anymore. After that call from my friend I was 99% sure that I was going to go the chemo route again, despite my fears and anxiety of what the effects would be. Then my oncologist told me that without the chemo my survival prognosis could be as little as 9 months. I looked at Terry and we were both at 100%.<br />
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I know that might not have been the choice for everyone and I know there are alternate treatments that really are working for some people. I also know when people send me links to articles about other options they are truly trying to help me and I appreciate that. Knowledge is power and the more informed I am the more I am able to question the doctors and take control of my treatment path. I respect everyone's individual right to choose the treatment that works best for them. And I hope others do the same for me. For me, and my family, chemo was the choice we were making.<br />
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One small silver lining in my decision to undergo chemo was that because of the type of cancer I had I was eligible for oral chemo. It's a pill I take every day and will for the rest of my life as long as it is shown to be helping slow the growth and spread of the tumours. It gives me the freedom to travel and the side effects so far have been minimal. I admit, there are nights when I can't sleep from the pain of the tumours that have spread through my bones when I question if I made the right choice. I wonder if I am being aggressive enough (should I insist on the IV chemo that may kill more cancer cells as well as more healthy ones?). I wonder if other natural remedies would have made a difference. I won't really know until March whether this chemo drug is doing any good. <br />
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In March it will be 9 months since my doctors first told me the cancer had metastasized. I know a lot can happen in a short amount of time but I'm feeling pretty confident that I will be here in March to get my next scan results. Then, being the realist I am, I'll ask a million questions, I'll gather all the information and I'll make another plan. The one thing I am positive about is that Terry will be optimistic the results will be good.<br />
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Until next time........carry on!<br />
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PS--Thank you to all the people who have supported me and this blog since it launched last Monday. The feedback and the comments (which can be found on this page) have been so overwhelmingly positive. I encourage people to use the comment section to continue to share your story and ask questions.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com9tag:blogger.com,1999:blog-118280887704354005.post-84443281433478064622014-01-20T16:51:00.000-08:002014-01-20T16:51:27.532-08:00Re-launch dayI think it is appropriate that today is the day I've chosen to re-launch my blog, under a new name and with a new purpose. Today is Martin Luther King Day and one of my favourite quotes from him is "Our lives begin to end the day we become silent about things that matter." I've never been one to stay silent on things that matter to me but the things that matter change. Last year I started a blog that was meant to be informative, fun and maybe a little frivolous---hence the topics like "How to make a great burger" and "How to make it look like you've spent the whole day cleaning."<br />
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Then last July I was diagnosed with stage 4 metastatic breast cancer that at the time had spread to my lung. This was three years into a primary breast cancer diagnosis so I had never yet been able to say I was cancer-free, but I was close and never imagined I wouldn't get there.<br />
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Here I am now, finding a need to write again and the topic at the forefront of my mind day and night is this thing called cancer. I'm still trying to come up with a better way to describe it than a battle or a journey so hopefully one of my six anticipated readers can help me. I say six because my primary target for this blog is my family. I see this as a one-stop blog where I can update everyone on my status at the same time so everyone gets the same message. I'm assuming my four kids, husband and mother will read it. Perhaps there will be other family members and friends who come on board but I love writing so much that I'm happy to do it without any audience at all.<br />
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The blog title is meant to be somewhat tongue-in-cheek because other than some bouts with strep throat when I was younger and a recurring ear infection I get whenever I swim, I really don't get sick. As far as I can recall I've never had the flu. I can count on less than one hand the number of times I've had a cold and, aside from the aforementioned ear infection, I haven't taken antibiotics very often in my 48 years. So I very often find myself (after knocking on wood) legitimately saying "I never get sick." When I notice people giving me that one raised eyebrow look I backtrack and say, "Well, aside from cancer, I never get sick." And so a blog was born.<br />
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A brief recap---In January 2010 I was diagnosed with stage 3 breast cancer which had spread to some lymph nodes. I underwent a lumpectomy, 12 weeks of chemotherapy and 25 radiation treatments. I then spent all of 2011 making up for lost time, enjoying food, drink, travel and life in general. Same with 2012 and most of 2013 though I did scale back on some things trying to make some healthy lifestyle changes. The effects of treatment and medication I was taking had left me carrying more weight than I wanted and so I was looking forward to nice weather in the spring of 2013 when I could start walking outside again. In early June of that year, while doing some gardening on my property, I struggled being able to walk up my laneway without having to stop to catch my breath. This lasted for the next few weeks and worsened with each passing day. It got to the point that I couldn't do anything without losing breath and sweating profusely. I didn't tell anyone what I was experiencing, including my husband. I was ashamed at the thought that I was so out of shape that I couldn't even walk up a flight of stairs. I thought if I went to the doctor she would just look at me and say your problem is your weight. I resigned to wait it out a few more weeks and get back on the treadmill which I normally loved and was used to being on for about 30 minutes a day. I couldn't make it 10 minutes, even at the lowest speed. I still ignored it out of embarrassment but a nagging voice was starting to talk to me from within. I thought about the dry, hacking cough that seemed to come up out of nowhere and was now going on a few months. I thought about the fatigue I felt that was unusual for me.<br />
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Finally, still without telling anyone, I went to see my doctor, still expecting her to tell me I needed to lose weight but at the worst thinking she may tell me I had pneumonia. The next hour is still a bit of a blur. She could see that I was losing my breath just talking to her and she didn't like the sound (or lack thereof) in my chest. I was sent for a chest x-ray on the spot and then back up to her office where she told me my right lung was completely full of fluid and that it was most likely cancer that had metastasized in my lung. I called my husband at work and he came to meet me where I had to fill him in on my symptoms and explain why I had kept them from him. We were both in shock and devastated. The next day I had over 3 litres of fluid removed from one lung and a week later another 3 litres (no wonder I felt like I was carrying around extra weight!). Within 2 weeks I had lung surgery where they drained more fluid, extracted tissue to biopsy and gave me a 'talc' procedure meant to seal the lining between my lung and hopefully stop the pleural effusion. The biopsy confirmed what no one was surprised to learn by this point. The cancer had metastasized.<br />
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Other scans showed lesions on my right rib that they would be keeping an eye on. My breast cancer was still estrogen positive (meaning it feeds on estrogen) so that was seen as a somewhat positive thing in terms of treatment. I would be able to take a low dose oral chemo pill every day rather than the more aggressive IV chemo that would cause me to lose my hair again and all those other nasty side effects. I started taking Letrozole in October. Everyone I talked to explained that my treatment was palliative. Which isn't supposed to sound as bad as it does, but it sounded bad to me. Basically, there is no cure once cancer metastasizes. It's automatically a stage 4 cancer and we all know the standard response of "well, there's no stage 5" when you ask what that means. Whatever treatment I was going to receive it was going to be for the rest of my life, whatever that ended up being.<br />
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My doctor did not want to give me a prognosis though he did say on average women with my type and age live about 4 years. He knew some who had lived longer and some who hadn't. He did not want me to live by the clock so he refused to say more other than if I refused any of the treatment he recommended (I considered that for less than 10 minutes) he would give me about 9 months.<br />
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It is now January and I've been on the chemo for almost 4 months. The cancer has progressed to the lining of my right eye retina, both rib cages, my spine and upper legs (femur). The last bone scan showed shadows on my skull which is likely what we all think it is but have yet to say out loud. So far, my scans to the brain and other organs are clear which is a good thing. The eye threw me for a loop as it's a more rare location for progression, but it has shrunk somewhat since starting the chemo and I am still able to drive and read, two things I treasure for my independence and livelihood. We don't know if the spread to the bones occurred before or after I started chemo as there was a 2 month gap between starting the drug and having a bone scan. My next scan in March will give us those answers.<br />
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The bone cancer metastasis is very painful and as such I'm on morphine regularly. I take two long lasting doses in the morning and at night and then usually 2-3 short-acting doses in between. This never totally alleviates the pain but it sure helps. Night time is the worst and my best times are in the morning. The morphine makes me tired so I try not to take it too often during the day so I can keep up with somewhat normal activities. Hearing people tell me I have to get the pain under control is the hardest thing for me to digest so far. It's not that I don't want to be pain-free but I also don't want to be a zombie. I still want to be able to write, cook, play with my grandsons and hopefully, soon, get back on that treadmill. It's a balance I still have to figure out.<br />
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I will start taking a bone builder drug next month which will hopefully decrease my chances of bone breaks and fractures common in bone metastasis. That will come with a whole host of other side effects. I'm learning more and more about the breast cancer metastasis (BCM) community, foremost of which is the fact that there is a community. I knew so little about this part of cancer and did so little research the first time around that I feel a bit foolish. I'm learning that not a lot of research money or awareness goes into (BCM), especially in Canada. I'm learning that everyone who dies from breast cancer is because it has metastasized. I'm learning there are buzz words and a whole new language to navigate through. The first time someone asked me 'where is your mets?' I had to ask them to repeat themselves as I had no clue what they meant. I know that only 10% of women with stage 4 breast cancer live longer than 5 years and only 2% live longer than 10 years. I know it can't be beaten, but it can be managed. I know it can't be cured, but it can be controlled.....for so long and then eventually it can't.<br />
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I've learned that it isn't treated as aggressively as a primary cancer because there is no cure and doctors are more concerned with quality of life. Because of that I still have hair and look relatively healthy, which I think is a good thing. That may change if my next scans show the chemo drug is not slowing the bone metastasis. I've learned there are many others like me who don't know a lot about the dynamics and the reality of stage 4 breast cancer. The natural thing for people to say when they hear this diagnosis is 'you'll beat it' because they don't understand (yet) that I won't.<br />
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One of the purposes of this blog is to share my story and keep my loved ones in the loop but it's also to raise awareness and educate people. For that reason I want to hear from others so your voice can also be heard. What have you learned since your diagnosis? What are you struggling with? What words don't you like? What do you wish others understood?<br />
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Until next week.....carry on.Anonymoushttp://www.blogger.com/profile/06611039629636929847noreply@blogger.com24