Beloved and I just celebrated our seventh wedding anniversary. We were married in 2004, whilst I was in the middle of my first treatment for breast cancer. I was bald, just out of surgery, sick from chemotherapy, but we were determined that cancer wasn't going to stop us from starting our lives together as husband and wife. And with lots of loving help from my mother-in-law, we pulled off what I think was a pretty perfect wedding, given the circumstances.
Fast forward to this past weekend, our anniversary and here I am bald and sick again. The little crop of hair that had somehow miraculously sprouted over the first part of the year, giving me hope that at least I was going to be spared the hairless indignity for a bit decided to fall out in tufts. So once again I sat in the little green chair in our garage, whilst Beloved shaved my head with the clippers that we keep for what now seems like a regular occasion.
Happy Anniversary to us.
This week I finally finished my emergency course of radiation. It's been a very long haul and has taken a lot out of me. Think transformation into a very old woman very quickly. I've seen some small improvements in my hand, but wont know really whether it will continue to improve or not. Only time will tell. Or whether the radiation has indeed stopped the progression in the nerves to stave off any more damage. Nor whether the next new chemotherapy will work, or for how long, or for what gain. We just don't know. Nobody knows.
The thing is every time I think about my cancer, I feel like I need to make some profound statement to keep raising hell about the state of metastatic cancer, it's research, it's treatment, it's lack of support resources, and for all the crap those of us living with it constantly deal with. But I'm really just getting to the point, where there's no bigger statement that I can make other than this is just my damn life and I'm deeply unhappy about it.
This cancer just directs every part of my life. It keeps me a slave to medications and their schedule. It keeps me a slave to the side effects of the medications. It keeps me a slave to the energy I have on any given day. It keeps me a slave to how I look and feel. It keeps me a slave in a body that I no longer recognize, a hand that no longer works. It keeps Beloved and I slaves to the next bit of news from the next batch of tests and scans. It keeps us slaves to the constant threat of the unknown, which as we keep learning, can change our lives profoundly in an instant.
And it keeps me a slave to the thought that we are just never going to dig ourselves out from under this.
And that's about all I have to say right now.
Saturday, September 24, 2011
Sunday, September 4, 2011
Ducking, running, weaving, bobbing, falling down, getting back up, managing, adjusting, adapting, screaming, world shrinking, confidence eroding, always moving, always shifting expectations.
That's the game of living with metastatic cancer of any kind.
It's been almost two weeks since, after months of excruciating pain, I awoke to find my left eye had drooped and my left hand had become almost completely paralyzed due to my breast cancer.
Since that time I have been receiving emergency radiation, which has sapped me of a good deal of my physical energy. I've also been spending a lot of time lying around contemplating this new reality in which I find myself, staring into space and feeling sorry for myself and wondering how I can possibly move forward and face the next moves in this evil game of cat and mouse.
I feel trapped in a body that I no longer know. I don't see myself when I look in the mirror anymore. I see someone getting tired and old before her time. Tired of constantly getting hit in the head, and constantly pulling myself back up only to be hit again. The toll on my body, mind and spirit is definitely starting to show.
I'm having trouble adjusting to the thought that I'll never really be able to use my left hand again. The hand feels like an alien piece of meat attached to my body and no longer obeys my brain's commands. I think I might be mourning it's loss, and the freedom that it's use offered in being able to live my life in the way that I liked to do. It's loss takes away from so many enjoyments that I don't think even yet I've fully begun to experience or contemplate. I think I might still be in shock over this.
I want to scream, I want to beat my fists. I hate that this has happened. I hate what this wretched disease is doing to our lives. There is nothing about having cancer that has enriched my life - nada. It just takes, and takes and keeps taking. Every time there's a new crisis, Beloved and I must take stock again, to see what we are left with and keep the faith that we'll be strong enough to get through whatever else is being served up. How so markedly different our lives are to our peers. We may as well live on another planet in another dimension entirely, our lives are so far removed from what most people could ever imagine. It just all makes me so sad and angry truth be told. It's simply not fair.
And so now the question becomes as to how long it's going to take me to bounce back mentally from this latest catastrophe and assault to my confidence. Somehow I have to psyche myself back into the the chemo chair. Be a strong and "empowered" patient. Find some blind faith, tempered with a bit of hopeful reality, to try and ignore the fact that at this point we're just going down a list of treatments with the understanding that there is little likelihood of a cure or indeed any guarantees of my ultimate prognosis. More chemotherapy to erode my quality of life just a little bit more. Waiting for the next scan to see if there's any improvement. Or not. Then whatever the next move is after that. Then the next crisis. And so it just goes on. Ad nauseum. No breaks, no end game, just a relentless and exhausting tedious cycle of heartbreak and devastation.
Trouble is no one really wants to hear any of this.
They want to hear that I'm feeling better. That I'm coping with the loss of the hand. That treatments will work for me. That people with metastatic breast cancer can "do well" for a very long time. That I'm feeling more positive about things. That I can get through whatever this disease throws at me. That I'm continuing to fight. That I won't ever give up. That I will remain hopeful, no matter what.
Yeah, yeah, yeah I hear all of that, but right now I'm reserving the right to wallow because I need to. My brain is just lacking the emotional and physical energy to do much else right now. Perhaps it's just switched into self-preservation mode, whilst the rest of my battered body tries to catch up.
I just want to tell the truth and surprise, surprise life isn't all fluffy pink unicorns dancing on rainbows, no matter how much I wish it were.