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.
Thank you for sharing your story! You are such an inspiring person. You are facing a personal challenge yet are open to sharing it with others and encouraging others to learn from your experience! Love you my friend!ReplyDelete
Thanks, Kris.....I appreciate your support and your friendship!Delete
I am so glad you decided to reblog! Since one of your motives is to educate others, I am going to Tweet a link to this. Thank you for your honesty and humour - I so wish you were blogging about something else, but I will happily follow you on this "thing" you are experiencing and share it in the hopes it will help others.ReplyDelete
Thank you for sharing Cindy. Reading this blog will inspire others who are facing personal challenges. Love the family picture!!ReplyDelete
I think this is a very beneficial way to communicate to all your family and friends, Cindy. Wishing you the best of luck with it!ReplyDelete
Thanks, Eileen for your support and encouragement!Delete
You truly are one of a kind Cindy, to be able to put your thoughts into words like you do is an amazing skill to have. This "thing" you are dealing with and going though "sucks" (that's the best word I can come up with!). I applaud you for being as strong and as inspirational as you are.ReplyDelete
WOW! Your courage and honesty is amazing! I admire your bravery and your ability to "say what you feel" about this "cancer chaos" (sp) you are facing. I will be paying attention to all of the information about your feelings, treatment and status in hopes that I can, in your honour, provide more effective care to people who are going through similiar things while I am nursing them in the emergency department where I work. Communication and verbalizing questions, concerns and enquiries are hard things to do in my situation--especially when I am often meeting people for the first time and they are facing what your are going through. Your insight will help me greatly. Thanks you for sharing will all of us Cindy ---may God be on your side!ReplyDelete
Thanks so much, Marie.....I'm glad you are able to get some help and inspiration from my words. Thank you for sharing and for all you do. The health care professionals are my heroes!Delete
Cindy - You are a natural blogger - your writing skills are very impressive. Thank you for sharing your story and helping to bring awareness and education to mbc. Like yourself, I have always been fairly healthy other than contracting the odd cold bug now and then. I knew very little about breast cancer upon diagnosis and thought that it was just "one more illness" to deal with. Thought that it would be treated with radiation and/or chemo and I would be on my way again. When the word "metastatic" (what?) popped up, I certainly learned a whole lot more in a short period of time than I could have ever thought.ReplyDelete
What do I wish that others understood? I wish that they understood that mbc is a daily struggle like many other afflictions. Treatment is forever and the anxiety that comes with each scan is tremendous. Is the treatment still working? Has the cancer taken up residence elsewhere in my body? There is a fine line between living life to the and trying to forget that the cancer is lurking. It is important for others to understand that even though one may look healthy and well, that there may me underlying issues such as pain, nausea etc that are part and parcel with many medications. I hope that you can find a happy medium between the pain and the "medicated stupor" that comes with so many treatments. Not always an easy task.
Having a great support system is important and I am very lucky to have family and friends that I can count on each and every day. I am determined to take advantage of every day that I am granted in the manner which makes me happy.
Here's to being in the top 2%!
Thank you for sharing your story, Barb, and for providing further insight into what it is like to have this diagnosis. I wish us both continued support, from each other and the community that envelopes us.Delete
So I threw some ideas in the hopper to try and come up with replacement words for Journey or battle are ; so far my fav is “this stupid fking cancer”, there were a few more less family friendly ones but this one really rings nicely to our ears I think!! I’ll toss a few more around though!Delete
Love ya Sis!
So far that one is at the top of my list!Delete
Your blog has really inspired me to become more involved with stage IV metestatic cancer research. Your courage and honesty is truthfully inspiring. I wish you all the best with that darn treadmill :) One of my favourite quotes from another inspiring young girl.. "Just keep swimming"--Talia Joy... or in your case,
"Just Keep Writing",
And for me,
"I'll be following"
Thinking of you,
Thank you Tasha! I do believe your generation will be the ones to get this right and do great things, especially young people like you who aren't afraid to work hard. If I inspired you in any small way then I am very honoured......love the quote and will receipt it often. Keep up the good work and hope to see you soon!Delete
I know you're doing this for your family, but I've learned so much from this first post - about the cancer, about you and about myself. Thank you,
Thank you, Brigid!Delete
Marie, you raise a very important point about cancer patients and the ER. One of the most difficult and frustrating things for Joanne (and I) was the many trips to the ER. They (and I can only speak about our hospital and not all hospitals) did not seem to understand the issues. For example, we sometimes would be told to wait in the waiting room--with dozens of contagious people. A cancer patient who goes to ER is usually going there for a fever (thus lowered immunity) and at high risk for "picking up" every germ around! Once Joanne was in palliative care, the situation improved, because her first call was to the on-call palliative nurse who would advise the ER of her needs before she got there. I always felt there should be a special area of the ER just for cancer patients--but I'm sure that is not possible in many hospitals. In our case (in Regina) the Cancer Centre was located right in the hospital--and sometimes, if I got desperate enough, I would go down the hall to consult our oncologist or his nurse. Then things usually started to happen quickly (i.e. an isolation room, masks and all that goes with that). I didn't like to "jump the queue" but I felt (and still feel) that cancer patients (especially Stage 4) needed a different protocol.ReplyDelete
Another great thing to advocate for Eileen! Thanks for calling attention to this issue.Delete
Thank you for sharing Cindy. You brought tears to my eyes. I've been avoiding the internet and just focusing on the part I'm going through- oral chemo teva-capecitabine twice daily and radiation which I'm not impressed with at this time. I call it the road I have to walk right now. But as competent as they seem to be in London, you've shown me I'd better get more pro-active . One of my peeves is being told I'm so strong....what you see on the outside is not always what reality is. I cry, I've screamed and I am terrified of what this is doing to me. But it's the only road I have and I have to walk it.ReplyDelete
I'm so sorry to hear about this road you are walking on, Deb, and I hope this forum and others you may find provides you with support. I too, used to cringe at the word 'strong'....did that mean I could take it because I was strong? Did it mean I didn't need as much support or empathy? But it became harder to fight the word when I started to see and realize how strong I was and that was a positive thing. It's the context that people use that sometimes needs to change. Please let me know if there anything I can help with and I will keep you in my thoughts!Delete
I am 29 years old and have been diagnosed with breast cancer, ease of treatment and a similar story, except for my first acceptance as a rejection of herbal medicine. I was not part of the Perseid movement and did not really build relationships with any of them, I just believed in their operation. I say this because it was during the use of Dr. Itua herbal medicine that I now attest that herbal medicine is real, the phytotherapy Dr. Itua heal my breast cancer which I suffered for 2 years. Dr. Itua herbal medicine is made of natural herbs, with no side effects, and easy to drink. If you have the same breast cancer or any type of human illness, including HIV / AIDS, herpes cancer, bladder cancer, bladder cancer, prostate cancer, kidney cancer, lung cancer, skin cancer, skin cancer and skin cancer. , LEUKEMIA, VIRUSES, HEPATITIS, INFERTILITY WOMEN / MAN, LOT OF LOVE, LOTTERY. ITS CONTACT EMAIL / WHATSAPP: firstname.lastname@example.org Or email@example.com/ +2348149277967ReplyDelete