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.