Breast Cancer! That wasn't in my life plan

Reflections on a journey with breast cancer.

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I have been doing a lot of reflecting as I approach the sixth anniversary of my diagnosis. What a six years it has been. The first year was the intense treatment - chemo, then surgery, then radiation. Dessert has been the five years since. I was stable on one drug protocol for four years. My life was normal and I could even question whether the diagnosis was real. It was. I showed progression in my scans January 2024. I was on one drug from then until August, then another from September to now. I dealt with side effects like wicked blisters that got infected. Ouch! (Even the doctor winced) I got a blister on the tip of my finger from knitting. From knitting!!! Of course, fatigue was a factor. Always. The fall was tough. I had started...
This came from one of the groups I'm in. I asked her permission to share this as part of my mission to challenge the pink, fluffy and sexy breast cancer messaging. MBC=metastatic breast cancer "You know it's MBC when - when you never shed a tear about a mastectomy because you were on a mission to see "stable" - when you requested to have surgically induced menopause at 38 - when you wave off the nurse's question: "are you suffering from hot flashes, fatigue and joint pain" with "Yes, yes and yes, least of my concerns, next" - when breast cancer month/ runs don't mention your disease because you represent the antithesis to their hope - when you're working on legacy stuff for your now small children - when death announcements are a...
I posted this in group that I am part of. I did that because fellow group members, one in particular, said they understood what I was going through. They don't. Yes, there's a bit of passive-aggressive here if you look. Hopefully it's a kind way of saying they don't really understand. I decided to share it here because it's information that needs to be known. You know how I feel about the pink messaging around breast cancer. Please read this if you want to understand metastatic breast cancer. It is a different journey than regular breast cancer. I imagine other metastatic cancers may have similar features. That being said, I can show empathy to someone with stage IV ovarian cancer. I don't actually know what it's like to live with it...
Beyond Pink
I haven't written much this year. I am noticing more people commenting on pinkwashing posts on FB. It seems there is some awareness happening. A couple ads I've seen mentioned that some of their October profits will go to metastatic research. Yay. Someone in a group I'm in created these. They're good information.
Metastatic Breast Cancer Awareness Day
I didn't write the following. I've decided to share it because it's important information. If you want to donate during "Pinktober", consider directing your donation to metastatic research where it will make the biggest impact. " Tonight, Tonight, Tonight! Make sure you join us this evening at 8 pm EST / 5 pm PST for #LightUpMBC LIVE! Check out LightUpMBC for all the details on how to tune in and help us shine a light on the need for more funding for MBC research! Metastatic Breast Cancer Awareness Day. One day in an entire month of “awareness” for the only terminal form of the disease… The following is taken from the Metastatic Breast Cancer Alliance’s account of how today came to be. In the summer of 2009, “Shirley Mertz and...
I recently watched a 60 Minutes Australia segment about Elle Macpherson's experience with breast cancer. She chose minimal conventional, evidenced based treatment and instead did a bunch of alternative "treatments". She feels she is healed and does not expect to have a recurrence. This segment bothered me. I was concerned about the message she was sending to other women who are diagnosed. Then I saw this follow-up segment addressing that previous segment. The interview is with a Medical Oncologist (MO). MO's direct cancer treatments. There are other types of oncologists. Someone with cancer will likely be referred to an MO first. This is an excellent segment and gives a decent idea of what happens with a breast cancer diagnosis...
September is Ovarian Cancer Month
Did you know that September is Ovarian cancer month? What do you know about ovarian cancer? Did you know ovarian cancer is often not detected until it's very late stage? Because it has symptoms that impact the bowels many women get investigated for bowel concerns and told they have something like irritable bowel syndrome. Many women feel their doctors don't take them seriously when they come with symptoms that are ultimately related to ovarian cancer.
Update
I posted this on my FB secret support circle. I decided I would post it here too. Well I have another update. This cancer life can present challenges. As you know I started a new drug in February. I had scans in July. Turns out the drug wasn't holding the cancer back as it should. There was some progression so the oncologist switched my meds. The drug protocol I'm now on is brand new. It was only approved by Health Canada (or whoever) a couple months ago. It involves a drug that is injected every two weeks at first, then monthly. There is also a pill which is taken twice a day for four days in a row with three days off following. This is a drug that is not covered by the province. I had to sign forms that the oncologist filled...
And so it goes....
The cancer "battle" goes on. That's language people seem to understand. It isn't my language. I think everyone who knows me knows that. I prefer to use my energy to live my life. I don't want to waste in it what will ultimately be a losing battle. Things have changed for me so I decided it's time for a more detailed update. As you know I was diagnosed with breast cancer in February 2019. When I met my oncologist in March 2019 she said I was "at least" stage 3. I had chemo, then surgery, then radiation. In September 2019, my oncologist phoned to say they had decided to treat me aggressively, as stage IV. That decision was based on the fact that I had a "met" (metastasis) on my T4. I also had one on my sternum that had responded to...
People don't get it. Why would they?
Part of my complaint about the pink and fluffy message about breast cancer relates to this. I know I look healthy. I don't look like a cancer patient. Thank goodness for that since actually looking like a cancer patient isn't a good thing. When you walk into a chemo room, you will see a room full of people who look pretty "normal". The caps might be the only clue. Cancer is not a one and done event. It isn't like an infection or something where you get treatment and move on. While many do get treatment and move on, cancer leaves its impact in many ways. Accepting treatment and following medical advice isn't "positive" or "brave", etc. It's the best option in most cases. I mean, really, what is the alternative?
So Pinktober starts tomorrow. Maybe you've already been inundated with pinkwashing ads around you, especially on Facebook. This is an excellent article about how to contribute to legitimate breast cancer causes. Pink is Not The Problem My plan (hope?) is to post information about breast cancer through the month of October.
More pinkness: the downside of "awareness" campaigns
So I'm having a discussion with Rita over on cruxifusion.com. She presented an article about BCAM (breast cancer awareness month) and how it has been funded by companies that produce carcinogenic products. Susan B Komen has been in trouble for this. This is the article: Covering Up The Causes of Breast Cancer I'm including it for discussion purposes. It makes quite a few good points. I don't agree with it all. It does give food for thought. I also found this article: The Trouble With Pinkwashing There's a lot of pressure to put more research into prevention rather than to support the drug companies' alleged desire to keep cancer around so they can make money. Sure, that seems to be the case some days. Prevention and early...
The beginning
As I mentioned in my other thread, I was officially diagnosed in February 2019. I will talk about how the diagnosis happens and the first steps. I had been experiencing pain when I moved my arm certain ways. This wasn't very unusual because I have degenerative disc disease in my neck that can cause similar symptoms. When my usual strategies of stretching and the like didn't work I started thinking of other possibilities. Around that time I discovered the mass in my breast. I knew immediately what it was. I mean, what else could it be? It took me a couple weeks to get to a doctor. Some of that delay was likely because of feelings of anxiety and dread. Denial most certainly was a factor. I wonder too as I write this if the messaging...
Reflecting on the fourth anniversary of my first contact with my oncologist.
This was a memory that came up today in my FB feed: I'd had my first appointment with my oncologist. Man she was scary! She's a very intense woman who is top in her field. She's got good boundaries and that often results in a scary directness. She also has a kindness which is nice. She's not touchy feely though. I'm thankful for her knowledge as it has kept me alive. What a past four years this has been. I had no idea then what was in store for me. That's probably a good thing really. I didn't realize that 1 in 3 women diagnosed with breast cancer would be or become metastatic and that I would be one of them. I looked at the list of people who responded to my post four years ago. Sadly (or not) many are no longer friends because...
Four years
Four years ago I was in the doctor's office where I learned I had breast cancer for sure. Of course I already knew it because what else would it be? I mean really. I've been feeling it today for some reason. I had bought the pink ribbon message that breast cancer was the "good" cancer and that it was curable. I had no idea what was in store for me These past four years have not gone as planned when I retired in August 2018. We thought we'd be travelling around in our fifth wheel, exploring Canada. Life or the universe or whatever had other plans. I say that I've gotten the full meal deal plus dessert. I was diagnosed as metastatic a few months later so dessert is medications I will take forever. I live my life as a person who...
Dealing with an "expiry date"
We all know life ends. Still, it's usually almost a theoretical concept, something to which we give little thought. A cancer diagnosis brings the idea of an expiry date into sharper focus. I suspect this may be the case no matter what stage of cancer involved. I base that on information I've gotten from my cancer support groups. This article came up on my FB feed today. The author has a very aggressive cancer, one that kills fairly quickly. It's what killed Gord Downie. This article resonated with me as a knitter. Two months to live I have been aware of my yarn and fabric stash. I've been aware of the projects I have on my to do list. I am starting a bag for my husband this week. I'm also going to start a sweater from alpaca I bought...
I came across this excellent article about language around cancer. It's particularly timely on the day we learned that Kirstie Allie died from cancer. The headlines state she died after a battle with cancer. WTF. Cancer killed her. Is she a loser because she didn't fight hard enough? This article addresses the issue nicely. Losing “Losing the Battle With Cancer” i promise to haunt anyone who says I died after a battle with cancer.
It's not simple
I initially thought I'd write about my cancer journey chronologically. Instead I'll most likely write about cancer related things that come to my mind. This is part of a post that a friend wrote. I love this. Cancer is not like strep throat where you get sick, take antibiotics and rest, then move on with your life. It is the friend that never leaves. When I was first diagnosed I had no idea what was in store for me. In fact I had the belief that breast cancer was highly treatable and not so bad. Cancer is cancer. A friend said my treatment would take a year. She was right. I had chemo from March to August, surgery in October (six weeks after chemo ended) and radiation in December/January (six weeks after surgery). My final in person...
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