Dilemma

In 2019 many of the women in my family underwent genetic testing to find out if they had genes that put them at risk to cancer, namely breast cancer.

A few of them found out that yes, they did test positive for some of these genes. One of them found out that not only did they possess one of these genes, but there was already a small cancer that needed to be addressed.

Of course…this sent MY doctors brains on fire. My OBGYN wanted to pull me off birth control immediately. There was talk of sending me to a gene specialist to be tested for several genes and to discuss my options.

Ultimately I decided that everyone could calm the fuck down until I had my yearly visit with my oncologist.

Which I did this week.

While I was expecting talk of precautionary measures and what to be on the look out for, I was not prepared for what I was told:

“Due to the genes that are clearly present in your family, and information we’ve discovered in the past year about the long term effects of doxorubicin (—a chemotherapy drug I was blasted with for 10 months), you are at a higher risk for developing breast cancer than we originally thought. It’s probably best that you begin regular mammograms and chest MRIs within the next two months.”

Well damn.

In the office, I was shockingly calm and level headed. I asked good questions. Proactive questions. Questions that smart patients looking out for their good health would ask. I stress this to you because I don’t want the take away from this post to be “Jesse wants to die.”

Jesse doesn’t want to die.

Jesse 100% does not want to die.

But Jesse doesn’t know if she necessarily wants to spend her time “preparing” for an illness that may or may not come, in order to prolong her life.

I have never, ever been able to imagine myself as an old woman. And I know that a lot of people would probably say they can’t picture themselves being old…but I mean more by that.

I do not want to live to be 100 years old.

I don’t really want to live to be 80 years old.

This is an unpopular opinion that I have, and most people find it sad. I, however, do not find it sad.

I am not married. I do not have children (and for all intents and purposes, will likely not have them, thanks to chemotherapy). I have undergone a giant battle already in my lifetime, one that left me already chronically ill. I don’t think it should be very surprising that I might not want to live to be very old because I would likely be a very sick old person.

So when you tell me I should spend MORE time being tested, MORE time under MRI scans, expose my already dying kidneys to MORE MRI contrast…I cannot help but ask…for what?

“To prolong your life!!!! Make it the longest is can be!”

I ask you again…for what?

“Jesse…this sounds like depression. You’re depressed.”

I mean, I personally think “I want to die, kill me now” sounds like depression.

But okay maybe…it’s a lot to chew on. And does it make me sad to have to do this chewing?

Yes. Yes it does. Sad. Depression. I see it.

But do I think I should automatically be labeled depressed because I don’t see the same value in all these “precautionary measures” to prolong my life?

Again. No children, not married, already fought cancer and not in 100% good health…hmmm?

“But your family and friends! Your family and friends love you!”

And I love them too, and they have me. I’m not suicidal. I don’t WANT to die. I’m not actively looking for ways to kill myself faster. I’m not a smoker, I’m not an alcoholic, I don’t eat Big Macs for every meal. I do yoga, I meditate, I live my life…

I just don’t want to spend precious time fretting over procedures and chilling in doctors waiting rooms to “maybe prevent breast cancer.”

Cuz guess what? My body, since cancer, is a boat with several leaks. The leaks are pretty well patched. But as soon as you think you’ve patched one up all nice and sturdy, another one might burst.

So yeah, say we spend all that time fretting over breast cancer. We get a mammogram and chest MRI every year starting now, at age 28. We get out ahead of it! We test those suckers over and over again! And maybe every other mammogram/MRI yields a false positive result, and so we put me through several biopsies that turn out to be a benign ball of tissue.

And one of those times…we find breast cancer in its early stages and we TREAT IT!!!!

And a week later…my kidneys fail.

Let me break it down like this.

Mid-way through my treatment, my mother took me to a fertility specialist in Syracuse. When I was first diagnosed, the cancer was spreading too quickly to do anything preventative of fertility. We could freeze eggs, a process that takes a few weeks…but in those few weeks, the cancer would likely spread to my bone marrow, decreasing my likelihood of survivorship significantly.

Being 17, I didn’t really give a flying fuck about having kids.

And to be honest, I still don’t really give a flying fuck.

But my mother wanted to make sure she fought for me, because she was a very thorough caregiver. I think anyone fighting cancer would have a higher survival rate with my mother as their caregiver.

So she brought me to a fertility specialist at one point mid-treatment just to ask questions and see about possibilities after my treatment.

The manner in which I was spoken to, the pity in the eyes of EVERYONE in that building, and the treatment options they presented to me with the promise of “maybe” saving some semblance of fertility…

I stormed out of the building mid appointment.

When my mother found me outside, I looked her in the eye and said that if I beat this disease, I would never, ever, spend another moment in a place like that. I would never, ever, expose myself to extensive “maybe this will help” treatments and tests.

And I would never waste precious moments surrounded by people who looked at me with such pity.

I can honestly say at this point, I don’t know what I will do. Women are supposed to have mammograms beginning at age 40. And at age 40, I was prepared to do so. As I’ve mentioned, I am not actively trying to die.

I just don’t know that I’m actively trying to prolong a life that maybe was not meant to be as long as others by spending another large percentage of my time in doctors offices and MRI machines.

The jury is out.