A Lighthouse on the Horizon

I spend too much time
Seeking shelter

World without end
Couldn’t hold her

There’s something that you won’t show
Waiting where the light goes

Maybe anywhere the wind blows
It’s all worth waiting for

Anywhere the wind blows

Toad the Wet Sprocket, “Windmills”

Anything can be normalized. If you are exposed to it every day, that is. A doctor can deny a patient a life-saving treatment or surgery, and then go to lunch with his wife and forget about it. An ICU nurse can tell a patient in agony to “quiet down” because she has other patients that she deems as worse off. And a person living with a terminal disease can live life functionally, little by little, even though their entire foundation and futures have been shaken and permanently cracked.

The psychology of living life while preparing for death is anything but normal. And yet, we must do it. I’ve spoken in prior blog posts about how the existential slap goes through phases. There is a point, after the initial crisis has had a chance to germinate and set in for a while, where a new psychological set point starts to kick in. This stays until the patients condition begins to worsen again, and then the emotions arise as they come to terms with the reality of their worsening health, and of the increasing proximity of their final end.

A year into my diagnosis, I believe that I’ve finally hit that set point. Gone are the days that I cry on a daily basis. I now cry maybe once a week, even though it makes my eyes burn due to the after effects of chemo. I think about it the most when I feel pain. However, thanks to modern medicine and my new long-acting pain medication, even that has gotten better. Even if I know that my condition hasn’t. And that the tumor causing the pain is likely still growing.

I’ve grown accustomed to chemical infusions that make me nauseas and steroids that steal my ability to sleep. I’ve grown accustomed to the fact that I will probably be on some form of chemo for the rest of my life until it all fails and I die. I’ve grown accustomed to hospital gowns and socks. I’ve grown accustomed to looking out for when my oncologist might miss something so that I can make a mental note to ask or follow up later. I’m even becoming accustomed to being less active, since any activity irritates my stent and makes my urine indistinguishable from cranberry juice. These things are all now part of a new normal.

This “normal” feeling has been partially bolstered by some encouraging news. This tumor in my abdomen that scares the hell out of me is finally going to be removed. It’s even on the calendar and scheduled. Both of my ovaries, and possibly my uterus have been given an eviction notice. Oh yeah, I forgot to mention- major surgeries that remove organs? Those have also become part of my new normal. The local surgeons I consulted have decided not to address the tumors in my liver as part of this surgery. But they are doing the surgery, and quickly. There is something to be said about speed, and I want this fucking thing out of me as quickly as possible. Before it causes a problem that can’t be solved without compromising my quality of life. Or even worse- a problem that can’t be solved at all.

I’m getting my second plane on the runway. And I am satisfied with that, as long as it is fast and can get me back to chemo as soon as possible.

Being scared out of my mind makes me angrier, and sharper. Lately I’ve been neither angry nor sharp. I mentioned to my oncologist that I think that I’m getting chemo brain. He brought up the fact that my pain medications may be the cause. That hadn’t even occurred to me for some reason. It should have.

Being angry and sharp makes me want to write more as public therapy. I haven’t felt the need to write as much lately, so I’ve started to attend local writers’ workshops to try to coax the writer out of it’s slumber and get me back to doing this. To help me remember why I started writing again and to force myself to not only stick with it, but to play with new boundaries and genres.

I’ve settled in to the disease. I’ve wrapped cotton foam around it. I’ve distracted myself with a video game- something that I banned in busier days, because I’ve never been at fitting them into a reasonable spot in my schedule. It’s either something I want to do a lot or not at all. Miraculously, I still have my hair. I’ve put back on most of the weight I lost. Vacations to Quebec and Kauai have rendered me helpless to rich foods and desserts. Having fun and relaxing have made me want to eat and drink good things.

So which is best? Angry and sharp or content and muted? I’m guessing it’s a balance of the two. The challenge comes with trying to find the right one.

I got notified of the final thumbs up on my surgery over the phone. There are a few questions that I still have lingering, and I will not meet with these surgeons again prior to surgery. Should I push further? Maybe. But my eyes are also glazing over a bit and focusing on two primary factors.

It’s kind of sad- yet oddly so on point- to use the television show Survivor to best describe those two factors. Have you been watching the current season? Sandra is back as a mentor to current players. During her season, she had a mantra, “as long as it ain’t me.” She would make any choice, any decision as long as she wasn’t going home. She had short-term goals (making it past the next vote) and long term goals (making it to the end), and continuously adjusted them as the situation changed.

My life has become Survivor- the Metastatic Cancer edition. I’ve also got my options mapped out, but am continuously adjusting them as the situation (or game) changes on me. I’ve got to keep manoeuvring to not only prevent the next bad news event from taking me out, but also to stay positioned to play the longer game. The first thing that this next surgery (tribal council vote) will achieve is blindside the current largest threat before it gets stronger and votes me out of the game. That threat, of course, is the tumor in my abdomen that is growing rapidly and actively encroaching on other organs.

Now I must consider the longer game strategy. Even if I can’t take out all of the rival alliance with this vote, I have reduced the number of places that my cancer resides. This puts me in a better position to advocate for future surgeries (tribal councils) where I can vote the cancer out of the remaining portions of my body that it resides. This all assumes, of course that the cancer doesn’t form a larger alliance behind my back, spreading further and blindsiding me first. The odds of winning the game of metastatic cancer are very slim. It’s pretty unlikely that I am going to win this thing, but I would like to make it as far into the game as I can.

I see another lighthouse, and it is beautiful. If it is real, then it has to be attached to land of some kind! And if it is land, perhaps I can begin chart out from here my course of longevity. Do I dare say my other secret wish out loud? That somehow despite all of the reality checks given to me by doctors that I could steadily advocate for myself- surgery by surgery- towards some sort of cure?

Shit. I shouldn’t have written that. I have angered karma again and I’m sure to regret that later. I’m like Charlie Brown, staring at that lighthouse with hope when I should know by now that it’s just another football, another mirage. I should know that what I am hoping for is going to be pulled out from under me or appear farther away the second that I get close to it. But it’s human nature to want to pull the wool over our own eyes- to grasp on to hope.

So I reach out, despite knowing that this next existential slap is going to sting me especially hard.

In the meantime? I have found a way to be more or less happy with this new normal.

It’s finally starting to sting a bit less when I hear others talk about a future life that I have been deleted from. I have conjured in my imagination a picture of my husband as senior citizen and it seems so real! I can see the hearing aid in his ear and hear his voice yelling at the kids to get off of his lawn. I realize that by the time that occurs I will have already been gone for decades. But those realities, surreal as they are- are now slowly beginning to normalize in my brain as well.

The consolation prize of this tragic new normal is that I am now more grateful than I ever before could have imagined for the people I have in my life now. I am also more grateful than ever for the gift of time itself, and for everything that I am still able to experience, from the good morning snuggles with my kids to watching a school of dolphins frolicking and racing our catamaran in Kauai.

And I am grateful to see another lighthouse. Regardless of what uncertain future it was sent here to harbinger.