I know I haven't updated this in a while. I'll work on a post to bring things up to date later. Later. Not right now. I have too much in my head right now to focus on that. A friend on the book of faces posted a link about the need for doctors to be willing to recommend palliative and hospice care for terminal patients, and it hit off a panic button in me.
This past month has seen a lot of losses among the metastatic ladies in the online community, and although I didn't know any of them particularly well, it's still a bit of a shaker. The average lifespan for someone diagnosed with metastatic breast cancer is three years. There's plenty of women who live longer than that, but a lot of women who die far sooner than that.
I only have the one spot on my liver. Just one. And I haven't worked my way through any treatments yet, save for one: Taxol. That's just one scratched off a long list of the things available to me as an ER/PR+ Her2- breast cancer patient. And my tumors responded quite nicely to the chemotherapy. I'm starting in with Zoladex at the end of the month in hopes that it will help keep the tumors stable for a good long while.
It still scares me sometimes to think that I'll be on hospice care someday. I don't intend to stop fighting until I've run through everything the medical world has to offer me. I can't stop. I won't give up, I won't call it quits, not while there's still a chance something might work, not while there's still treatments I haven't tried yet. I'm not giving up.
A part of me is afraid my care team will give up on me, though, and reading articles that encourage doctors to think about offering hospice care instead of treatment makes me panic. My onc has promised me he'll fight with me on this, and I have no reason to doubt him, but I'm still scared of being told "We think that hospice would be better for you than X or Y treatment."
That's just the beginning of the end and while I accept that there's no cure for Stage IV, I'm not willing to accept the end is anywhere but a long way away from here.
This isn't fair. This isn't fair. Fuck cancer. Fuck this. It's not fair. I have people who need me. I can't give up and I won't give up and hospice is giving up and I can't do that. Let me live. I accept that this disease will kill me, but I'm not ready to go. It's just the one spot, I have a lot of treatments available to me, I'm not going to be in the lower end or middle of the statistics. I can't be.
Fuck cancer.
About Me
- Susanne
- Diagnosed at 39 with Stage IV IDC breast cancer, grade 2, metastatic to the liver, and ER/PR+ and Her2-negative.
I'm glad you are talking about this. I think many people are avoiding it, but we all see it happening. Seeing those posts lead me to feel I needed to do something to stop it. It's like you are waiting in a long line and you don't know how long until your turn comes up. The only thing I can think to do is to educate people and get the money to the organizations that claim they are funding research.
ReplyDeleteSame here. That's why I'm working on a memoir and will try to get it published. The more people who know about the reality of metastatic breast cancer, the more awareness there is about the lack of funding we get. I'm using my own wedding as a means to an end, asking that instead of getting us gifts, people donate to Metavivor. I've spoken with the people involved, and they're metasisters like us.
DeleteOn a post in the Young Survival Coalition forums, I talk about this some more, and it was pointed out that we might end up needing to create the same kind of commotion that people with AIDS did in order to get researches to pay attention to them. The problem is that sort of thing takes time and energy, and there's so few of us who are in a position to fight, and we're spread out across the nation. It's a financial strain for many of us to meet up at the few metastatic conventions that exist. I don't know where to start such an uprising, or how to go about with it. So I just speak up online, and I hope to get a book that tackles breast cancer and metastasis published.
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