Does Beauty Still Exist?

His email was short. 

“Can you feel those lymph nodes? Time for Chemo.”

That was it. 

I wrote back, plead-arguing with Dr. P, my oncologist.

“Can I get the COVID vaccine first? I want to do low-dose chemo and hope that will work for you,” meaning I’m getting another doctor if not though I don’t want to, and also, I don’t know if I will do chemotherapy either.  

“Do you want to talk this PM?” he asked.

“Yes please,” I said, grateful he’s so responsive.

Tom, my partner, didn’t think the PET CT I’d had the night before was too alarming when the results came in the next morning. It was a “wet read,” which means it was done as a rush.   

I know this because I asked the tech what a “wet read” was when I saw the word in red marker on my file. We were standing together in the radiation trailer with all the “Do not enter if pregnant” signs and biohazard warnings all over the walls.

I’ve changed.

17 months since my cancer diagnosis and I don’t even ask who is poking me with what and for whom or why anymore. I just sit down, look up, roll up my sleeve, and start squeezing my hand tight into open and closed fists to make it easier for a vein to be found. 

“I’ll test your glucose first,” she said. 

“I’m doing keto,” I said, “so it should be good.”

“60 to 100 is normal,” she said, “but if it’s over 180 we can’t do the test.”

My reading was 75.

The tech had gone keto in the past, and loved it, she said, except for the part I was in (the beginning) when the “keto flu” hits as the body switches over from running on glucose to being powered by ketones. 

I said I was in carb withdrawal.

I told her I was starting to wonder if a life without carbs was even worth living and I couldn’t believe keto might be harder than chemo.

She said if I could hang in there I’d find myself more energetic than ever before long. In fact, she had done it to make her 16-hour shifts easier to endure.  

Will it be good to be energetic while dying I wondered.

What if keto, calorie restriction, and off-label drugs are like surgery and chemo were – sandbags and sea walls that did next to nothing to stop the flood of cancer cells?

“Time for chemo,” he said.

I’ve been bracing myself ever since my first CA-125, an ovarian cancer tumor marker went up months ago. 

Time for chemo is another way of waving the white flag because cancer has taken the lead. No one says that exactly or speaks in ways clear or direct.

Instead, the PET CT report says things like:

• “intense FDG uptake” in the head and neck with the bulk and “supraclavicular adenopathy” along with measurements “compatible with neoplasm,” 
• “FDG uptake within small left subpectoral lymph nodes” and “bilateral internal mammary lymph nodes” as well as the “small bilateral axillary lymph nodes.”

It seems there is some good news as well when it says, “No abnormal FDG uptake is identified in the lungs,” though they add, “a chest CT study is suggested for further evaluation.”

Unfortunately, the good news is dimmed by the “abdomen and pelvis results,” which show, “FDG uptake within a left upper quadrant peritoneal deposit compatible with peritoneal carcinomatosis,” as well as “FDG uptake adjacent to the bowel in the left and right abdomen concerning for serosal implants,” and also in the “retroperitoneal lymph nodes including aortocaval lymph node and a left para-aortic lymph Node,” and finally “a small right inguinal lymph node concerning for neoplasm,” as well.

“What does that mean?: Tom said because it does sound a lot like medical jargon with the adenopathy-carcinogimiosis-peritoneum blah-blah-blah.

Nothing is personal or direct. Nothing says anything about favorite foods, my eye color, that I’m a mother and lover and writer who feels well and wants to live. 

“At least there are no spots in the lung,” I say to Tom, relieved, as I’ve been out of breath and hoping it was from the keto diet but worried that the cancer spread to my lungs. 

“Maybe I’m metastatic still but stage 3 instead of 4,” I add, as though this means anything at all which I am not sure it does. 

Dr. P says another course of chemo will maybe get me four to fourteen months before I’d need more. This on and off chemo cycle is how, without a moonshot success or advance that hasn’t in the past 50 years years, is how I will live out or die out my final days. I wonder if I’ve heard him right but read my medical notes. The patient (me) he writes has about “2-3 years,” and “is understanding the excruciating reality.”

What the excruciating reality means is not just that I’ll be dead before my daughter graduates from college but that the chemo brain, neuropathy, anemia, low platelets, and white counts will get worse and never go and stay away. I’ll get weaker and weaker and weaker.

I’d thought how at least there were no grapefruit or cantaloupe-sized masses as there were when I was first diagnosed. Maybe that is a good thing I think but I don’t even know what words like good or bad mean anymore. 

I can’t absorb all the news. I can’t think or feel or plan. It feels like danger is everywhere.

I’ll need the oncology second opinion, the surgeon consults, the follow-up CT to compare it to the other three, and to shell out more money if I want advice from an integrative oncology place like the Block Center or alternative approaches or a naturopath or herbalist to weight in. 

But does any of it matter? 

Will anything or anyone be able to make a difference for me when a difference has yet to be made for so many women with this disease?

My tiny bottles of supplements seem no match for this battle.

How I’d longed to be the 15% who can go on and live for years and can use words like “cure” or who still have a chance of surviving five years post-diagnosis. 

How come the options are as piss poor for me as they were for my Nana when she had this same disease in the 1980s? At the greatest time of medical need, I’m not focusing on joy, family, and bucket lists, I’m trying to create a do-it-yourself and try-not-to-die plan because there isn’t one yet for most women with #ovariancancer. 

There are a lot of expensive drugs that don’t work pumped into people like me. 

Roll the dice.

Flip a coin.

Take a chance.

Hope for the best, plan for the worst.

It feels as flat and cliched as all that.  

I try to move forward and stay in the here and now but despair and desperation are like cement shoes I can’t take off. 

Sometimes I stand still and look at the sky and for a second can pretend I’m still my old self in my old life and am just someone else with the illusion of endless time. 

Oncology lacks the innovation, creativity, and curiosity I expected to find. I love my oncologist, who is kind, warm, smart, and listens well, and am surprised he’s not more bothered as well. 

I was 52 when diagnosed. I’m not 54. I’ve had almost a year a half. 

I don’t get much more than now.

This short timeline doesn’t seem urgent to anyone else. It feels like, “ovarian – lung – and pancreatic cancer” are the shit-out-of-luck and sucks-to-you cancers. Even though the treatments don’t often work, it seems that the most toxic combinations keep getting tossed at me.

I try lean into faith.

What else is still true? 

Is there still beauty in the world? 

Can I catch my breath? 

My lifespan seems like a wick that gets cut shorter and shorter.

Everyone asks me what the doctors say and what more can be done as though I’ve somehow just failed to get to this part of the equation, as though even though I’m the one with cancer, I’ve not inquired long or hard enough about surgery, drugs, or clinical trial options. 

I understand this.

I feel the same way every time I talk to my oncologist. Surely, there must be something-anything in the bag of tricks not yet pulled out?

“Let me say something dramatic before you shut me down,” I say to my partner.

“I have a ton of support. If you can get to Canada – go! If you don’t want to remember me fading away, I’m fine with that. You are off the hook. I’ll not speed things up but I’m not doing months and years of dragged out death. I don’t want the people I love burdened with taking care of me. I might want to live in a hospice house so visits can just be visits and love just be love and so you aren’t overwhelmed with caretaking, and helping me manage life, pain, and death. I don’t want my last act on earth to be traumatizing everyone who loves me by watching me waste away.”

“I never want to hear that again,” he said. “It’s insulting. I know what might be coming and I’m here. You, in any shape, are good for me and my health and I’m not going anywhere even if you try to push me away. I’m serious. Please don’t say that again,” he said. 

He wasn’t mad. 

And I hear him but I can’t promise I won’t think, feel, or say those things again so I stay silent.

“Don’t think for me,” he has said in the past, adding, “I’m a grown assed man.” He made me see that my tendency to think-do-and takes care of others wasn’t always the kindness I thought it was but a way of not involving people in decisions or my inner life. 

I appreciate his honesty. 

“I’m allowed to worry about you as much as you worry about me,” I say. 

“You can’t just love and take care of me and expect that I won’t do the same.”

We hold hands at the kitchen table. 

He is kind. 

As we talk, he warms the leftover steak tips and pesto because my head is raging and my stomach is off and we decide to put something in it might help. We don’t know if I feel like crap from the radiation that is in my system that makes my pee smell like skunk spray or if it’s cancer causing waves making me seasick within the boat that is my own body.

I had slept alone the night before as I wasn’t supposed to be near children or babies for 8 hours. While adults and 18-year old children are supposed to be safe, why risk exposing my loved ones to the danger that might be in me?

“I don’t like not kissing or hugging before bed,” Tom says, standing in the doorway.

“I don’t like radiating you more,” I say. 

We wave and blow kisses. 

This is the beauty that is still here in the tiny moments, the routines of high regard and quiet care that I have not much noticed, never mind appreciated for too much of my life. 

I appreciate them and him now. 

Beauty here.
Beauty still.
Beauty always. 

That’s what love is. 

How sacred those steak tips, the ones he grilled on the back porch in the middle of winter even though he doesn’t eat red meat. This is the man who after a full day of work drove me to the hospital, then home to cook, and then back to pick me up. And when I arrived at home, tired, and hungry from fasting, the steak tips were waiting for me.

In bed, I wondered if those tips went through my body soaking up radiation and if I would have glow in the dark Chernobyl poop in the morning? I wondered if it was o.k. for the cat to sleep near me or if I should sleep in the car away from all living things? 

What kind of world are we in where we radiate people with cancer to check if they have more cancer?

“I’m getting a bit scared of dying,” I tell him. 

I’m tired, sad, and worn. 

I like meditation more now because I can rest in it a bit. If I imagine death to be anything I imagine it to be the connectedness of energy that doesn’t require bodies. When I meditate I touch death and then I think of savasana, the corpse pose at the end of yoga, and how hard it was for me to simply be still on a mat in the dark with other people. 

For many years, I needed to be busy, in motion, and now I think and wonder if the final rest will be peaceful. Will there be a way for me to love my daughter and partner from wherever there is?

I want to say Fuck Cancer or feel something angry, defiant, and certain. 

I don’t. 

Saying fuck cancer when I’m filled with it also feels like saying Fuck Me, Fuck My Body, and Fuck Myself.

I don’t say “Fuck the stomach flu” when I get that. 

I don’t say “Fuck Covid” either but I do expect cures, vaccines, and people to wear masks because action and science are supposed to matter – only that is not true when we’re talking cancer.

When it comes to cancer we’re supposed to be happy with days or weeks of progression-free survival and let go of hope for living years longer. 

The truth is I not angry at cancer – I am angry at oncology. 

I’m mad at the medical industry and sexism and injustice.

I resent having to spend any of my limited time and energy fighting while depleted because I know that is the only way things might be different for others. 

I want to be cared for and by a medical system that has hope, healing, health, and options.

That’s not the system that exists.

I rage at what is often called the “standard of care,” which for many cancers, could more accurately be called the “standard of fail” as ir repeatedly and consistently fails most of us.

There’s no prevention.

There’s no early detection. 

There’s not even an easy way to even track disease progression. 

There are endless scans, tests, and toxic drugs though.

I don’t mean to be cynical but in what other career can one make a quarter to a half a million annually when failing 85% of the time? Would oncology care be better if bonuses were issued each year patients stay alive longer than the median average?  

“It’s a punch,” Tom says about recurrence “and those are disorienting,”  

He explains how fist fights in movies are unrealistic and that taking a punch to the head, in real life, is brutal.

“So take the punch and get up is how I am,” he explains “because I can’t stay in the punched place,” he said, “But I do know this is serious….”

“I’m glad you said that,” I said because “sometimes I felt like you didn’t know or believe the seriousness.”

Once, I cried seeing an old woman pushing her cart at the grocery store. “I’ll never be old,” I realized, and grieved the future me I’d always expected to be. He argued then, “You could still outlive me.”

But I didn’t believe that even as he still did.

“I can’t live in the punched out place always,” I tell him, “But I do go there more than you and I need to prepare for what might be coming.” I add, “I’ve done a pretty good job managing COVID, Cancer, Coup attempts, etc., and I’m pretty pleased not to be freaking out all of the time.”

It’s been work though which is the strangest part of cancer. There are so many appointments, visits to doctor’s offices, pharmacies, scan sites, as well as paperwork and time spent on the phone arguing over schedules, bills, eligibility, side effects, and symptom management.

Cancer gives more work, and less time, takes more health, and leaves you to use what time you have planning and recovering from treatment.

“I have to know I’m doing all I can with all my heart,” I explain to Tom. “It’s the only way I can rest and surrender and accept that the length of my life is out of my hands.” 

But I don’t accept that yet.

Not fully. Instead, I think, “Dying isn’t dead,” and it’s my new mantra. 

“I’m still here,” I say, “Above ground.”

I sobbed when I watched the inauguration. “This will be the last one I’ll ever see.”

I delight in the snow and cold, the birds at the feeder, the moon in the sky. a

I’m learning how to live at the edge of life with awareness and uncertainty.

I don’t want to waste the time I do have only fighting for ways to have more.

Dying isn’t dead and I’m still here soaking up all the life, love, joy, and beauty I can.

P.S. Thanks to Kathy MacDonald and our Crones Coven Collective for the “Beauty Still Exists” writing prompt, centering, and support – as well as the image for this post.