A reader writes an open letter to the Connecticut teen who was just denied her right to refuse cancer treatment:
I was also diagnosed with Hodgkin’s Lymphoma, when I was 13 years old. I went through surgery, chemotherapy, and radiation. It sucked. I mean, really, it sucked. At the time, chemo was the worst. I puked for days on end. The word “nausea” doesn’t do it justice. I would puke until there was nothing left in my stomach, and then puke up bitter, foamy, yellow bile, until that ran out. Then I would just dry heave.
One thing no one seems to talk about is that you can actually taste the chemo when it goes into your veins. Or at least I could. I would use cinnamon mints to try to cover the taste. Eventually, the taste of cinnamon candy itself made me nauseous. I couldn’t eat it for years (it still isn’t my favorite). Back then, they used mustargen (I think it is much rarer these days, as there are better, less harmful drugs available). It was nasty stuff. One time, it actually leaked out of my veins, and burned my left arm – literally. It felt like it was on fire for days, and left scars that I can still see (but only because I know they are there – no one else could notice them).
I am talking about this stuff because I don’t want to come off as a Polyanna, like I’m trying to sugar-coat anything. It sucked, and in many ways, still affects me. But, Cassandra, with all due respect, the issue isn’t whether you are “mature enough” to make a decision to end your life. The thing is, you have no idea how much living there is left for you. No teenager does. There is no way to understand it from your vantage point.
And here’s what I really want to tell you:
life is fucking awesome. And I don’t mean in some kind of cinematic, gauzy, sentimental way. It isn’t all peaches and cream – not for anyone. But you will experience pleasures beyond what you can currently comprehend. I promise. I understand that one of your major concerns is that chemo will leave you infertile. It did to me. And I am now the father of two amazing children. Neither of them share my DNA – and I can’t imagine it is possible for any human to love anyone or anything as much as I love these kids. And nothing, absolutely nothing, even comes close to the joy I have already gotten from being their father.
Hopefully, someone had the foresight to freeze some of your eggs, and who knows what technology will make available in the future to increase your likelihood of having biological children. But even if that can’t happen, I will bet everything that you will find that once you are raising children – once you hold your babies in your arms, once you see them smile and laugh for the first time, once you know that nothing can comfort them like your own words and touch, not sharing your genes with them won’t diminish the experience of being a parent even a tiny bit.
But that’s just me. I have always wanted to be a father. Maybe that isn’t the most important thing to you. Here are some other things that you will do:
- Laugh with friends
- Fall in love.
- Make art of some kind.
- Swim, or run, or jump, or play soccer, or whatever it is you like to do with your body (yes, while Hodgkin’s sucks, it leaves you far more physically capable than a myriad of other ailments).
- See new places.
- Help someone.
I am more than 30 years older than you. The things I have done, the people I have met, the experiences I have had since I was your age dwarf everything that came before. And I have no idea what is still in store for me. Sure, getting old will suck – even worse than cancer did. But I won’t trade a day of it if it means one less day with my wife, one less picture of my grandchildren, one less day to brag to a nurse about what my daughter is doing in her career, one less laugh at a good joke, one less listen to a great song.
I don’t know if it is right for the government to force you to get treatment that you say you don’t want. That’s a tricky, complicated issue. But, Cassandra, that you are flat-out wrong, that you should do everything you can to fight for the life that you have a fantastic chance to have, is as clear and simple as it gets.
An Old Fart
Another reader also had the disease:
Back in the ’90s, I had Hodgkins twice, first at 28 and then at 30 (it never really went away, so I had an autologous stem cell transplant). When I was first diagnosed, my doctor literally said, “The good news is you have Hodgkins.” This disease is no longer the death sentence it was decades ago, so it’s sad to see Cassandra’s brain be poisoned by her parents.
I am not a big fan of how cancer patients are presented as “battling” the disease, as it romanticizes it too much and can sometimes make it more frightening than it needs to be. But this girl’s parents need to be properly educated and asked why they would not want their daughter to live a healthy life. That has to be some sort of child abuse, no?
I like to tell friends who ask whether I beat cancer by saying that I only beat it if I die of something else first … which of course means I will never know if I beat it. That is a bummer, but Cassandra will one day be glad she has the same opportunity.
A much different view:
Cassandra is just “misinformed“? My wife had a similar experience to the parent who wrote in about their kid undergoing chemo at five. She was diagnosed with a rare and aggressive form of leukemia when she was four and underwent full-body radiation, several courses of chemo and a bone marrow transplant.
She’s now 34, and her whole life has been an ongoing medical drama – changes to her hair (“Chemo Curls”) and fingernails, tons of minor skin cancers, severe metabolic issues, irregular periods and a pretty horrific miscarriage the one time we managed to get pregnant, followed by early menopause at 29, followed by breast cancer and all the attendant surgeries and follow-ups that involves. She’s had over two dozen surgeries at this point in her life. She is, in my opinion, a minor medical miracle at this point, but nobody would deny that her whole life has been punctuated by intense pain and unimaginable suffering, almost certainly thanks to the cancer treatments she underwent as a child.
This is not to say that she would have been better off without the treatment she received then. She’d be dead if not for modern medicine. But each time it does get harder, her quality of life gets a little worse (not to mention the bills that pile ever higher and deeper), and a little more of her morale is sapped. I dread the day when we have to face it again even more than I did the first time. It doesn’t get easier.
So I guess I can’t really blame Cassandra. I don’t think she’s misinformed by scare stories. Chemo is poison and is a terrible, terrible thing to have to undergo. I feel for her and hope she finds some peace, and hopefully also the ability to forgive the state of Connecticut for trying to save her life.
As poignant as that sentiment is, another reader doubts it:
This is a teenager who’s already employed every evasion tactic she can – including running away – to make her wishes clear. The only thing that can possibly be the outcome of holding her captive and forcing very unpleasant medical treatments on her is that when she turns 18 this year and is able to legally walk away, she will never in her life go near a doctor or mainstream medicine again. I know I wouldn’t.