Mutant Reasons

Genetic mutation is something that just happens, it’s random and inevitable. Lots of times when a gene mutates, it doesn’t even matter. But a pathogenic, disease-causing mutation of TP53 does matter. It means that your body’s most powerful defense against cancer is impaired. Lots of times, when an older person gets cancer, it starts in a cell that randomly had a consequential, pathogenic mutation of TP53 at some point, and now it lies vulnerable to carcinogens.

I was born with mutated TP53s throughout my body There was a consequential typo in the very first copy of TP53 that I made in my very first cell mitosis: zygote-me divided and grew, copying the mistake, copying the mistake. How rare, how irreversible. This condition has a name: Li Fraumeni Syndrome.

I have been mutating ever since.

In the X-Men universe, there are mutants, people with genetic mutations that give them special powers. Lots of awesome powers: telekinesis, telepathy, the ability to heal quickly, super strength, the ability to control metal or the weather. Some of the mutants’ powers present a problem to the person with the power: Rogue can’t touch the people she cares about without sucking out their life force. Some of the mutations are just kind of shitty: in the comics, there is a mutant named Beak who looks like an ugly baby bird and can barely fly.

Li Fraumeni Syndrome is a shitty mutation. We are susceptible to so many cancers, common and rare alike: blood, bone, brain, connective tissue, glands, organs, skin, breast. 90% of us get cancer before we are 60. And for lots of us – for me – cancer comes early and often.

With every cancer comes surgery, and with each surgery my body (which is me) transforms. A part is taken away and I adapt to the loss. Goodbye kidney, gall bladder, bile duct, duodenum, inferior vena cava, adrenal gland, lymph nodes. Goodbye to the parts of my liver, pancreas and colon that had to go. My insides are tightly edited, Hemingway wrote them. In contrast, the scars written across my torso are lengthy, numerous, written by Dostoyevsky, or Joyce. I look like the mutant I am when I take my shirt off. My insides and surfaces are written to match the instructions of my DNA.

In my Li Fraumeni support group, people ask for advice and opinions from one another when we are making decisions about whether to prophylactically remove: the gall bladder; the uterus and ovaries; our breasts; our legs even. Whenever something that you don’t really need to survive is at risk, we seriously consider removing it. Our discussion thread says things like:

“I figure the more taken out the less chance of cancer.”
“I love not having to worry about it.”

If you have breast tissue and Li Fraumeni, you have a greater than 50% chance of getting breast cancer. And for that reason, lots of mutants with breast tissue choose to amputate.

Of course there is debate about this. Surgery is no joke and for many of us, it is traumatic.

“Emotionally/mentally I cannot go through another surgery and a surgery that will take away something that is vital to my being. I am having trouble getting past that point.”

Seriously considering a voluntary, preventative breast amputation, I attend a surgery consultation at my local cancer hospital. I lay on the exam table with the paper crunching beneath me and my hospital gown open in the front. The surgeon examines my breasts; we talk through my medical history, my experiences with surgeries and cancers. She walks me through what the mastectomy would be like, the risks, the options.

At the end of the appointment though, she makes a big reveal: a breast MRI from the previous August described an area of concern I hadn’t followed up on. I told her nobody had mentioned it to me, and here she struggled with her composure. She immediately leaves the room, comes back, and shows me a print off of the MRI report. It says I have an abnormally large lymph node near my sternum on the left side and that I should get follow up tests. The radiologist wrote the report nine months earlier, yet nobody pointed it out to me or took action. The oversight is intensified by the fact that I am in remission for melanoma that had entered my lymph system in my left armpit – near the area of concern.

Instead of anger, I go straight to bargaining. My prayer: please do not let this be the end of my road. May I survive to see the next cancer scare.

Dread is the name for the emotion that is always at the table. Dread is fear combined with knowledge. I dread my next cancer, the changes it will bring to my body, and I dread the possibility that my next cancer could be my last cancer. I am afraid to encounter the edge of the abyss but also – it is just where I live.

It turns out that the enlarged lymph node was only a scare. A new breast MRI shows no growth and the radiologists notice the same enlarged lymph node in a CT scan from 11 years prior. Unusual but stable, benign, just fine.

“In my opinion, with Li Fraumeni, there is no second guessing anything. Take it all.”

So we plan the amputation, and how to handle my chest afterwards. Time to mutate again.

About a quarter of breast cancer patients who get a mastectomy choose a flat chest like me. It’s not uncommon. Reconstruction is not one surgery; it’s a set of them. Though I can bring myself to do one voluntary surgery, I cannot contemplate doing more than that. But there’s more to it than that.

I look in the mirror and consider my breasts. The right one is bigger than the left. I know that my partners have had interest in them, but I have felt neutral about this: not better or worse than attention paid to other parts of my body such as my back, my legs, my neck. I don’t like how large the areolas are. I have not felt interested in making my breasts look nice – I barely ever wear a proper bra. Maybe removing them will come with some relief.

But below this line of thinking lies another observation. My right breast has a scar from a Hickman line I had in me for 6 months in 1998-1999. The line was installed so that I wouldn’t have to get poked over and over with a needle during treatments and surgeries as I survived my first cancer, adrenal cortical carcinoma. The scar, to the right of my sternum, a hand width below my collar bone, is a white jagged spot where the tube exited my chest. Two sutures had secured the line in place. I remember exactly what it felt like to have the line in me, looping up over my collarbone and then down into my blood supply. I remember the process of cleaning it every other day, sterilizing the sore opening of my skin around the tube, injecting cold saline and metallic heparin to keep the tube flushed, redressing the wound, and taping the tube down onto my skin.

It was the time in my life when I paid the closest attention to my chest, and it was 26 years ago. When I think of my breasts in my mind, before I think of their shape, my nipples, anything else, I see the little Hickman scar and then I feel the line under my skin, and then I shift my thoughts away. I have probably ignored my breasts because of this greater grief, my transition into a fully embodied mutant.

They are a part of me, but the hardest thing about saying goodbye is how easy it is. In a way, I lost my breasts back in 1998. With this new mutation of my body, I will still be wholly me, and maybe even more so.

The Yellow Bluffs at Kelly’s Point on Guemes Island are eroding, but they are supposed to.  At high tide, when waves hit the shore, the sediment in the bluffs crumbles; chunks of land, trees come down. Winds and tides move the debris along to feed beaches with sand and gravel further to the north and the south. This process protects and preserves those beaches. It creates habitat for new life. The shape of the land mutates, but it is still Guemes Island. The island doesn’t go away and it has never stopped mutating, not once. Changing protects the island.