Not that it's any of your business...

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Recently I attended a picnic with Brett. We were invited by his geek posse friends (they all collect Star Wars toys) and their families. Many people in the group have children ranging from babies to 16 years old.

A five year-old girl sat down and talked to me for a while, asking me all kinds of questions.

"Why is your hair so short?" It is easy to style.

"What are those dents in your face?" They are called dimples.

"Who colored on your skin?" These are tattoos.

It was the questions she asked next that threw me a bit.

Motioning toward all the kids running around she asked, "Are you a mommy?" No.

"Well... are you a daddy?" No!

"Why aren't you a mommy?" I just decided to not have babies. I am going to have a puppy one day.

"Who would be the puppy's daddy?" I pointed at Brett.

When I was a little kid I would imagine that I'd grow up one day and have babies. Looking back, I doubt I wanted kids because I really wanted to have kids (because what the hell do you know about life when you are 5 years old?) – I probably thought I wanted to have kids because I was given baby dolls as toys and because I had a mom, I loved my mom, and there is nothing better in the world than a mom when you are a kid (so why not be one when you grow up?).As I got older, the thought of, "I want to get married and have three babies when I grow up!" turned into, "I want to go to college, get married, begin a nice career, and then maybe have a child or two."Around 17 my opinions further morphed to, "Screw college! I want to tour the country in a punk rock band, be famous, and maybe I will get married one day. But kids? No way."Over the last 13 years I have changed a lot, but many of my feelings toward life have remained the same. I did tour the country (many times) in a punk rock band. I was never "famous," but I am going to get married some day – some day very soon, actually.That just leaves me with the issue of children, or the lack thereof. Until I met Brett, I was 95% sure I did not want to have children. And after we started dating I found out that Brett was 99.9% sure he didn't want kids. Well, sounds like a match made in childless heaven, right?All was going swimmingly until I found my tumor grew for a second time and I would have to have a second craniotomy. Brett, Bob and I met with Super Awesome Nurse to talk about the surgery and treatment post surgery. We knew I would go on chemo and we thought I would have radiation. (Tech note: I never did have radiation.)

Super Awesome Nurse said to me, "Chemo is poison. It is bad for you, but it is worse for the cancer. You have to take it, but it is going to mess with your body. If you want to have children, we need to take some eggs from you now before they are permanently damaged. Some women have had healthy children after chemo, but I would not want you to take that risk. The odds are those babies would have severe birth defects – if they even made it at all."

That conversation was one of the craziest hours of my life. It was like...BAM! Your tumor has grown.BAM! You are going to have another brain surgery.BAM! You are going to have chemo and radiation.BAM! You really should think about farming some eggs.

I looked over at Brett, then back at Super Awesome Nurse, and said, "I don't want kids. Gimmie the chemo!"

So here I am... fighting the cancer, poisonous eggs and all. Do I regret my decision not to save eggs? No. But I will tell you what I am saddened by.I am sad that there are women out there who are diagnosed at a childbearing age, before they have children, who don't have the luxury of time (or money) to save eggs for the future. And if those women aren't yet in a relationship and they freeze unfertilized eggs, the eggs have a lower chance of survival than one that is fertilized.I am worried that a future me, who may change a lot over the next 13 years, may suddenly change her mind about having children and know she can't risk it.I am annoyed that fertility preservation for men is as simple as "put it in the cup" and for women it involves hormone drugs and invasive farming.Now that we're getting married people naively ask if Brett and I plan to have children. I could answer that it is none of their business. I could tell them a disturbing story about mutilated chemo eggs. Or I could say that we don't want to have kids.And that's what we were planning to say before cancer, anyway.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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