There 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.
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.
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.
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 "fill in the blank" for the cure 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.
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 'elephant in the pink room.'
Pink Ribbons Inc. 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).
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.
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.
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.
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.
Until next time.....carry on.
Monday, 24 March 2014
Monday, 17 March 2014
Lucky
Happy 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.
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.
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.
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!
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.
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!).
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.
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 because 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.
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'.
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.”
Until next time.....carry on. Slainte!
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.
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.
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!
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.
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!).
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.
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 because 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.
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'.
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.”
Until next time.....carry on. Slainte!
Monday, 10 March 2014
Pity Party
There 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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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."
Until next time......carry on.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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."
Until next time......carry on.
Monday, 3 March 2014
Hindsight is 20-20
On 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.
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.
At the end of that long year I sat in my oncologist's office where she told me three things:
1. She wanted to me to take a daily dose of Tamoxifen, often prescribed to pre-menopausal women to help prevent breast cancer recurrence.
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).
3. She would see me in five years.
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.
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.
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.
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.
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.
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.
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.
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.)
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.
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.
Until next time......carry on.
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.
At the end of that long year I sat in my oncologist's office where she told me three things:
1. She wanted to me to take a daily dose of Tamoxifen, often prescribed to pre-menopausal women to help prevent breast cancer recurrence.
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).
3. She would see me in five years.
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.
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.
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.
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.
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.
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.
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.
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.)
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.
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.
Until next time......carry on.
Monday, 24 February 2014
Til Death Do Us Part
You 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.
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.
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.
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.
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.
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.
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.
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.
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.
Until next time......carry on.
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.
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.
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.
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.
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.
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.
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.
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.
Until next time......carry on.
Monday, 10 February 2014
Bucket List
I 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.
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.
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.
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.)
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.
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.
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.
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.
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.
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.
Until next time......carry on.
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.
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.
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.)
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.
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.
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.
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.
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.
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.
Until next time......carry on.
Monday, 3 February 2014
What to say or not say
A 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 it's 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.
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, "wish you were here."
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.
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."
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.
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.
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.
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?
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.
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.
Until next time......carry on.
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, "wish you were here."
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.
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."
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.
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.
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.
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?
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.
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.
Until next time......carry on.
Monday, 27 January 2014
Treatment decisions
One 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)
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.
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.
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.
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%.
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.
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.
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.
Until next time........carry on!
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.
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.
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.
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.
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%.
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.
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.
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.
Until next time........carry on!
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.
Monday, 20 January 2014
Re-launch day
I 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."
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
Until next week.....carry on.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
Until next week.....carry on.
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