My blog has been basically on hiatus for over a year.
In January 2018 I found a lump in my breast. It was large enough to be pushing out against my bicep and I was a cup size larger on my right side. That lump turned out to be a big, aggressive tumor and I was diagnosed with de novo stage 4 breast cancer. De novo means when I was first diagnosed I was already stage 4.
Stage 4 cannot be cured, but it can be treated.
I have metastases (secondary tumors) in my liver and lungs. I spent 2018 doing chemotherapy and radiation therapy, and I had a double mastectomy without reconstruction.
This sounds bad but I have been incredibly lucky. I’m under 50, which gives me a slightly longer life expectancy than if I were over 50. I’m healthy, overall. My blood pressure was down to normal before my diagnosis. (I shall now disclose to you that when I was still working at the university it was 180/126. I was about to have a stroke. I’m so glad I don’t work there anymore.)
And I’m even luckier to have had people to walk with me all through the last year. I couldn’t have done it without my friends’ support. I owe them everything.
More good fortune: because I wasn’t able to work for 10 months, if I’d still been in Auckland, I wouldn’t have been able to make my mortgage payments and I would have lost my condo to foreclosure, or, best case scenario, lost a shit-ton of money from an urgent sale. Because I moved to my small town three months before diagnosis, I had no mortgage, and although to clear my debts I have now had to take a loan out against the house, I still have a house. Isn’t that the damndest timing? Thank you, universe!
In December 2018 I was well enough to start full-time work again. I am incredibly fortunate to have found a safe, secure Day Job with 15 sick days a year, four weeks’ annual leave, and if a medical appointment is under 2 hours duration I don’t even need to lodge a request for time off.
Working full time is an ongoing struggle, I won’t lie. My medication causes fatigue and joint/bone pain. Some days are tough, but the pain is a blessing because I’m still here to feel it.
Much more important than my Day Job is writing down the stories in my head before I’m gone. This is my focus right now.
Overall, I am awesome. My metastases responded well to chemo. I’m on tamoxifen, which is like weed mat for tumors, and it’s working for me. My last three blood tests show my key tumor marker – CA15-3 – is down in the totally normal range i.e. the cancer is beaten back for the present. Aside from tamoxifen, I’m done with treatment (for now). I look forward to a future of regular blood tests and CT scans, and at some point the cancer will come back, but then we’ll try a different drug, and then a different one, and then another, and by that time, with luck, I’ll have a bunch more options currently in development, like immunotherapy.
So how long have I got? There’s no way to tell.
The average life expectancy following a stage 4 diagnosis in New Zealand is 16 months. Isn’t that shocking? That figure is skewed by the lack of timely, accessible, and culturally appropriate primary health care for Maori and Pasifika women, leading to late diagnosis and therefore fewer treatment options. I have huge privilege, and I will live longer than 16 months.
Going by US figures, median survival for my age group is 39.2 months, which statistically gives me until mid-2021. The five-year survival rate – i.e. till 2023 – is 36%, which isn’t negligible. There’s definitely a good chance I will make that.
Statistics never tell the whole story. Survival rates necessarily come from people who were diagnosed in the past, and cancer treatments get better every year. The 5-year survival rate doubled between 1992 and 2012, so the longer I live, the better the chance I can see the development of more effective treatments.
The 10-year survival rate is 14.9%.
I choose to live as if that’s not true. I choose to live as if I have 35 more years. 2054. C’mon, universe, let’s take that ride. I have a total solar eclipse to see.
I will blog about cancer stuff from time to time. Not all the time, but definitely sometimes. If this is triggering for you, you might want to stop following my blog. I’ll miss you. There will be blood tests. There will be CT scans. There will definitely be more chemo in the future: hopefully many, many years from now, but I have no control over that timing. And I’m going to want to talk about all this. I’m more keen on talking about notebooks, and planners, and climate change, and science, and the cat who adopted me while I was laid up on the sofa recovering from surgery (I can’t wait to tell you about him). But the cancer will always be lurking in the shadows. That’s what it does.
Fuck cancer. I have sunlight to bask in, words to carve, and a cat to pet. The world is gorgeous and I’m so glad to be in it today.