I haven’t been posting. Not here, not on Facebook. Not on Twitter. Not my own words or thoughts, really. There’s so much happening that sometimes I can’t sort through it properly. I feel a certain impetus to put a positive spin on things, but I’m much more realistic than that. It often comes across as pessimism but it’s actually realism. See, there are people who are statistical anomalies because of how often things seem to go in their favor. Others are just as anomalous, except in the opposite way. Those people who cannot win a hand of cards, who will get all the numbers of the lotto off by 1. That’s me! It’s ok, though. I don’t gamble and it’s part of why I stopped taking chances with my life.
That realism is beating me up lately. Sort of like all the stupid tests and procedures I’ve been going through. I’m becoming an irritable, grumpy patient.
To recap, since the surgery things have gotten weird. The best way to explain my diagnosis before surgery was that, since I didn’t have any pain elsewhere and my cancer *should* have been fairly non-aggressive and straightforward. The doctor from Moffitt Cancer Center, whom I consulted for a second opinion, put it very succinctly and confidently when I commented (somewhat exasperatedly, I’ll admit) that nobody would even tell me what stage my cancer was.
“Stage II,” she said. Period. I know that doctors, even excellent ones, are fallible. It doesn’t make it less unsettling to always be at the wrong end of that fallibility, though.
Realistically, breast cancer can’t be properly staged till after it’s known whether or not it has spread, and the protocol is to cut first, run imaging tests later. At least for everything after the initial diagnosis. So I waited, I had my mastectomy, and only after that pathology showed that my cancer had spread into my lymphatic system did the real poking and prodding begin.
Yesterday I had chemo class. That was, all told, two and a half hours of my life that I’ll never get back. My takeaway is this:
I knew what I needed to know already, except for the surprise addition of a couple of drugs that will be added to the toxic stew I get to have injected into my body. Yay. Also, I was told, in so many words, through having to verify what looks like wrong info on a fact sheet specific to my diagnosis, exactly what my diagnosis is. See, not one single person in this process has talked to me about my prognosis because the diagnosis is only now becoming official. That’s why I finally agreed to do the bone biopsy last week. Not one person has bothered to ask me what I want to do (with the exception of Dr. Rock, but that was surgical) about treatments. What do I expect, what are my reasons, how aggressive do I want to be. It has been expected that I’ll be as aggressive as possible, and any pushback on my part is seen as a power play. There shouldn’t be pushback, or a power struggle ever at all. Perhaps patient care should begin by asking the patient what’s up instead of assuming that we’ll throw everything at the problem as often and for as long as my body can take it.
Stage IV breast cancer, as a whole, has an overall rate of 5 year survival of approximately 22%. With treatment. Those are not just terrible odds, they are odds that, believe it or not, I’ve never defied. Ever. Some women survive eight or ten years, once in awhile it is longer, but that seems to be the rare exception. One thing I’ve found to be the single uniting thread in every single report and story I’ve read so far is that every woman who survives for more than two or three years goes from treatment to treatment, with some periods of remission in between. Their lives revolve around regular testing and treatment.
That sounds torturous.
It isn’t how I want to live.
It is, literally, my worst nightmare come true.
Cancer has never scared me, but it’s treatments sure as hell do.
Last week, Dr. Rock performed a little surgery to install a port into a central artery in my chest. That’s helpful in that my arm really can’t take much more of the blood draws and IVs. It hurt like a sonofabitch, though. Three days later I had a biopsy on my T5 vertebrae. A week later, my back still feels like I was punched and my chest is still bruised, though not as swollen.
Had I really been at Stage II, my chances of full recovery would’ve been over 90%. Even Stage III is around 73%. Stage IV is incurable and the length of my life is very likely to be determined by how much bullshit I’m willing to go through.
With chemo, I get to look forward to some unpleasant things that will affect my appearance Losing my hair weighs heavily on me. I don’t look forward to it, or to the swelling I’ll have (the chipmunk cheek look many chemotherapy patients get). I was told to get rid of the acrylic on my nails. No hair, no nails, no cheekbones. Those seem so silly and unimportant, until you imagine yourself like that. Anyway, it keeps getting hammered home when my friends invite me to facebook makeup parties. Knowing that my skin will change, that I’ll need to learn ways to make myself feel normal without eyelashes or eyebrows or hair turns the constant notifications into tiny, unintended daggers being thrown straight at my heart. I’ve been in five of those groups in the last month. Hopefully, there are no hard feelings for the ladies throwing the parties, because I know there was in no way any ill will. This is my own vanity and my own issue.
I didn’t want to be sick, to be in pain, to lose what I had worked so hard to regain. My independence, my sense of direction, my earning power, my looks. My dreams.
I can’t quantify that, or find a statistic that does it justice.