This is How It Works

Regina Spektor, “On the Radio”

You may have gathered that the last two weeks or so have had some darker days. Physically and psychologically, the post-surgery period is not one that I have been able to handle very well.

It begins in a hospital, and I hate hospitals. The apparatus, the tubes, the monitors, the frequent interruptions, the gowns, the inability to move freely or even fully accomplish hygiene and self-care. I am put in my place quickly. I am not a person, but a patient.

It manifests itself in the eyes of the 20-something resperatory technician sitting at the bottom of my bed. She stares smugly at me as her senior lectures me and I try helplessly to communicate my concerns with a breathing tube down my neck and nothing other than a pen and a piece of paper with no space left.

I will remember that smug look forever. This girl with no health issues and her entire future ahead of her, looking down on me as I attempt to advocate for my quality of life. I don’t look like an intelligent human to her; just some crazy older lady that needs to stop trying to communicate and let the better people in the white coats do what they want to do. She does not yet know how little she knows about the full spectrum and complexities of life that lie ahead of her.

After the hospital, I get to go home. The pain is still there, but the pain management system is not what it was. And then I realize that I get to deal with not just the pain. I also get to plunge headfirst into an estrogen-free existence. The hormones driving my body systems for 30 years are gone now. Just like that. No gradual transition. I get to jump on the fast-track to old-ladyhood lest I miss that phase on my way out the door.

Finally, two days after leaving the hospital, my stitching breaks open. A visit to an ER and back to the surgeon nets a solution that has your software engineer husband learning how to be a nurse.

How could we ever have imagined, at 42 and 41 that this would have been our lives?

All of this is no good for the brain. It starts wandering off to it’s favorite dark places. As I am being cared for by my husband, I begin to draw parallels to my future home hospice care. In my own room, but in a hospital bed. Will he have to bathe me? Change my clothes? The vast unfairness of it all begins to hit.

And what about the pain? If they can’t give me anything to meaningfully help with the hormonal changes or do more than simply dull the pain, how can I trust that they will be able to do so at the end? When I am possibly delerious and am unable to advocate for my own needs?

My last post had me in the thick of all of this. And rather than being fake, or avoiding writing, I decided to just let it all go. I know that it came across as whining, and I don’t care.

Part of my goal with this blog is to show the truth of the heart and brain’s experience with terminal cancer. My last post was part of that truth.

Here’s another truth. This week was a little better. My wound is not healed, but it’s slightly better. My pain hasn’t gone away, but it’s slightly duller. My hormone crash hasn’t gone away, but I’ve developed work arounds to make it slightly more bearable.

And this is how it works. Things are always changing. Right now they are changing- very slowly- in the direction of getting better. And someday, either a very long time or a very short time in the future they will do the opposite.

And this is how it works. It isn’t very fair. But you take the things that you have and you love and you use them to lift you out of the dark places and to stop you from dwelling in them. Experience and acknowledge the pain, but don’t grant them free reign to kick out or negate the good and joyful things that you do have.

And this is how it works. You take the things you get, and you try to spin them into the best life you can. You take the opportunity to grow and make your best effort. Not to be somebody else, but to be the best version of yourself that you can manage.

And this is how it works. Life will have other plans. It will give you challenges that you didn’t ask for. And it will be very hard to see the advantages you’ve had that you’ve always taken for granted. You take these challenges and you learn to either conquer them or manage to live with them. You just can’t let them run you over and flatten you. You can’t let them kill you without a fight.