Wednesday, Feb. 24th
Things are wacky this time. Ten years ago, I was diagnosed on Labor Day and started chemo and radiation on Sept. 27th. In those three weeks, I had seen two oncologists, a surgeon, and had CT scans and a PET scan. I had the mold of my pelvis and legs made and I got my four teeny tattoos for the radiation therapy. This time, it’s been four weeks, and my insurance still hasn’t approved an MRI. I can’t make plans. I can’t sign up for a 9-month long training I want to do. Because I have no idea if I will be able to do adequately participate. I have no idea who our health care industry works for. But I’m a wealthy white woman able to advocate for myself and it is not working for me. Jesus.
Aargh… Having to fight so hard for something I really do not want to do is stupid stressful. Cuz, I really don’t want to this. I do not want to be a cancer patient again. I like my previously known to be healthy body. But I can’t keep pretending forever. And the options that might be possible are both really pretty awful. And freaking painful as all hell. And I’m afraid that I’m going to need to make a very difficult decision about treatment options (not to mention quality of life) and would like as much time as I need to make that decision, FFS. I really don’t want to be a patient. Being a healthcare patient is really, really bad. Can you imagine how wonderful it would be if my health insurance actually worked for me? I can’t.
A couple of posts ago I mentioned that I’ve thought about death a lot in my life. There was a reason I told you all that but then I forgot to tell you that reason. It had to do with what I was reading. Right before I was diagnosed one of the many books I have on hold at the library became available. It was called “Smoke Gets in Your Eyes”. It’s a book about the funeral industry and American’s relationship to death. It’s well written and worth a look if you’re willing to think about such stuff.
She talks about the many varied ways we could approach death and the possible ways of being with a dead body and what we might do with our dead bodies. She advocates investigating and thinking about what you want to have happen when you die. And to have those conversations with those in your life who would want to know, sharing what you want early and often.
I had the honor and privilege of being with both my parents when they died. I learned from my father’s death how much I wanted to be with his body after he died. I wanted to wash him and dress him. I wanted to connect with his body. We didn’t arrange for that because we didn’t know any of us would want that. We’d been in the nursing home holding vigil for too many days. I was anxious to leave an hour or two after his death. But later, I really wanted to be with him again.
With my mother, we’d been sitting vigil for so long. 9 days? 10? My mother wanted to continue to live to a degree that was… well pretty astonishing. She wasn’t giving up. And all 10 of her kids stayed with her. The assisted living home she was at was amazing. Such a lovely, well-lived in, comfortable place. I actually moved in there for those 9 or 10 days. I’d walk around in my pajamas in the morning getting coffee and greeting the early risers. I slept on the floor or moved my mother over and slept with her when my sister Shelagh wasn’t. I don’t think she was in any pain, although I don’t know what the shutting down of organs feels like. And I was with her when she died. And then my siblings came, and we stayed with her for a long time. We bathed her and dressed her. We cried and laughed and cried a lot more. It was better. For me anyway.
Both my parents were cremated and set to rest in upstate NY where my father was born. All good. All very good. And as they wanted it to be.
But it’s interesting to think about what else it could look like. The author of “Smoke Gets in Your Eyes” wants her body to be reconstituted with other life. In other words, she wants her body to be left out in the woods or a field or wherever to be eaten by vultures and other animals. I found this a little harsh. Or maybe even violent. And I couldn’t imagine wanting that. But then I thought about being dumped, (okay, gently slid), into the ocean and I liked that idea. I have no idea how that is any different than the vulture in the woods scene but there you have it. I also have no idea if that’s possible, but I liked that idea. At least today.
The real and very final thing that is true for me regarding this is that I do not much care. It’s whatever my loved ones want or need. I request they take global warming into consideration when disposing of my body, though. Because we should all care and take that into consideration 100% of the time and then more often also.
I also believe that Ted’s family has a plot in New Hampshire. That’d be fine, too. But no embalming. Or weird fancy casket. I guess I care about that.
Okay, when I finished that book, the very next book that showed up? About a week after learning of having cancer again – a memoir written by a palliative care doc. WTH? I managed to read it. Dang… so much to think about there and I don’t really know how to make some of those decisions. I do not want a whole lot of lifesaving stuff done. And I might have to be able to move for quality of life. Movement is super important to my well-being and sense of self. But maybe if I couldn’t move I wouldn’t need to move? I don’t know…. I remember being in bed for weeks in pain the last time I had cancer. It was awful. I wouldn’t want to live that way. I least I don’t think so. However, the pull I have towards staying alive for my children is fierce.
You should know. I’m not good at decisions. Ever. With anything. I have figured that out. So now when I buy something, or commit to something, or start something I know that I will have remorse about it 100% of the time. I try to lean into the remorse. I try to hold it and look at it and see what it has for me to learn and I try to keep going or and be happy with whatever stupid color I chose to paint the wall or jacket I chose to buy. Not kidding. Buyer’s remorse with every decision. So how to make decisions about what quality of life? Whew. Beats me. The other day Ted changed the sheets on our bed, and I was excited all day long to climb into bed in the clean sheets. This may be a commentary on how often we change our sheets or it could be the fact that small pleasurable moments are what make life.
Seriously, talk about this stuff with your people. Talk about what makes life worth living for you. What is the amount of suffering or what kind of suffering would you endure to continue to live? What’s the minimum amount of pleasure you want to partake in? What kind of pleasure is most important to you? What. Makes. Life. Worth. LIVING? Also, FFS, write your damn will. It’s the least you can do for your loved one. Especially if you are going to leave all your stuff for them to sort through. (Who wants a box of stuff?)
I had these very conversations with Ted the other day. Again. We’ve had these conversations before. The night before Ted’s surgery, almost exactly 17 years ago, when Ted had an enormous risk of dying, we had this very excruciating conversation. I mean excruciating. About money and the kids and what he wanted and who should get what and how should I do this and that. It was so hard. So hard. I will never forget the intensity of that conversation. Or the connection we felt. When you are faced with life and death situations these conversations are a whole new level of depth, and man, they are hard to have when they are this real. Whew. It’s vulnerability on STEROIDS. It’s admitting to and accepting the most very vulnerable parts of me. My breath. My heart. My memories. My desires. My loves. My fear. My ache. My pain and hurt and sorrow. My life. It is intense. It makes shit real. It takes like a whole day’s worth of calories.