Blue Ruin

When is it time to downsize the clutter, in doing so, reliving old memories, good or bad. I've tamed all the papers into one file drawer, but I have to work at it weekly to keep it from growing. Do i want to go through old cards, and bring up feelings from the past? People I no longer keep in touch with, by choice or not. People I miss. People who hurt me. Notes and letters that hurt. But also happy memories, birthday cards, notes from friends in high school. Sad that I'll never have that intensity of friends like I did back then. Or the cousins. They still exist, but now they have families of their own. My brother has his own family, kids or not. 

All those movies and books where they tell you you'll never have friends like that again - Stand By Me, Now And Then, Derry Girls, Gilmore Girls, Friends, etc. I tried so hard up until my 20s, but then suddenly I was estranged from everything, and when I came back, people were getting married and had real families, and I was estranged - by choice? not exactly. By a wall. Not invisible. More like a window. Fiona Apple described it well. After my great Aunt Regina died, the priest told me there was just a veil between us. She could see me, but I couldn't see her. I nodded, but the problem wasn't that she was gone. The problem was that people leave. and people get sad. and it's hard to see my uncles in pain, my aunts in pain, my mother in pain. I won't have to see all this after I'm gone. But it's weighing on my heavily. AND I WANT IT TO. I don't want to be in denial. I didn't ask to be born, and now I'm going to leave a huge chasm in several lives. I'm devastated that this is the price of love and family. This is a huge design flaw. This is what religion tries to patch, but religion cannot solve a problem it didn't create. The problem is that we learn to love and then one by one everything we loved gets torn away, or fades away, or walks away, or drops dead, until you have what you started with, plus a whole lot of pain where the bonds were. Stop telling me it's worth it- you don't know that. How can you know?

written March 29

title from "real bad News," aimee mann 

Labels: bad news, cancer, chasm, fear

Tomorrow I will be at the hospital at 9am sharp for yet another CT scan. This one will show whether the chemo I've been on since December is working. 

If it is, then I guess I stay on it for now. This is a very low probability: Doxil has a 20% response rate to platinum-resistant cancer. So if there is disease progress, they will stop the Doxil. 

What comes next? Well that is another fun choice I can mull over during my vacation*: the one that makes ALL of my hair fall out after the first infusion, or the one that could possibly make me blind. So do I want to lose the only part of my body that still looks like me, or keep it but not be able to see it? or see anything else: my cat, my husband, the internet, pill bottles, the TV, hell I could just throw my brand new glasses away. Or, or. I could do neither. If I start Toxil, I can pretty much guarantee never to have hair again. It will not be growing back this time. I will die bald. On the other hand, if I start the other one, I might go blind. 

What happens if I choose neither? The cancer progresses. Of course, it could still progress with the other treatments, and the bald head and blindness will all be for naught. No, I think I want to live the rest of my life. I put my life on hold for over two years now, always sick, always tired. I want some time back to live before I die.

**The belated honeymoon we had to push back for two years but are finally going on next month

Labels: cancer, fear, scanxiety

There are two kinds of cancers: cancer that gets better and cancer that doesn't get better. 

Obviously, the kind that gets better is the one you want to have. But the kind that gets better sometimes comes back as the kind that doesn't get better. 

This is where you run into a problem. People want you to get better. Of course they do. It's expected when someone you love is sick, that you want them to get better. When you have a cold, people expect you to get better. When you have bronchitis, they expect you to get better. 

Here is where it gets tricky. When you have a life threatening illness like covid, they expect you to get better. Even though it is possible you might die, it does no good to focus on the bad outcome. This is normal and considered a good coping mechanism.

With incurable cancer, things will not get better. The best you can hope for is to live as many years as possible in as little pain and suffering as possible. You might have days where you feel good, like you can barely tell you have cancer. But these days are not a sign that the cancer is getting better. At best, it is progressing slowly. Kind of like climate change. You can hope for a temperate winter, but the earth's temperature is steadily rising all the time.

So when you're at the point where you start to suffer from the cancer, you know it won't get better. You might have days where the suffering is less. But overall, the suffering can only continue to get worse. You have a progressive illness. Metastatic means it is all throughout your body. It is too late to cut the cancer out because you are the cancer. The goal now is to poison yourself in a way that kills the cancer faster than it kills you. Sometimes after a few months, the poison has shown to be useless in killing the cancer. However, it hasn't been useless in killing you. Your heart is weaker. You get winded unloading the dishwasher or folding your laundry. You have to ask people to repeat themselves, because even though they spoke loud enough, you couldn't understand the words they said. 

This is when you reach the point that people tell you they hope you'll get better, and it hurts. It hurts because its a little reminder each time: by the way, you won't get better. But smile anyway and agree that you will. Why must the sufferer perform false hope for the healthy and able-bodied? Don't they have enough going for them? I won't make you feel better about my terminal illness. If you need to convince yourself cancer isn't really that bad, or that it gets better, please do so with someone else.

Right now I need help dealing with the fear of losing bodily fuctions, of losing strength, of losing mobility, of losing independence. Of losing my sense of taste. Of losing my sight. Of losing hte shape of my body, of my neck as I turn into a bullfrog and age 15 years in one summer. Of my round, pregnancy-like stomach. Of my drawers of clothes that won't zipper, won't button, won't wrap all teh way around a body twice the size they were made for. And this is still early in the progression - imagine what else you're infor? What kind of horrors will become of your skin, your nails, your ability to walk, your ability to add numbers and write down your name. What else will be taken asay from me? At this point, nothing will be given back. Metastatic cancer is a one-way street.

Labels: cancer, empathy, fear