I’ve shaved my head. Again.
This is the fourth time in my life I’m bald. The first time when I was born, the second time when I was about two and mom tried to give me a hair cut that didn’t work out. The third time was three years ago, 15 days into my first chemo therapy round. Just like now, I was going to lose my hair anyway, but instead of waiting, I decided to throw a party.
I did not want my children to see me lose clumps of hair. Heck, I didn’t want to see me lose clumps of hair. Shaving it all off made cleaning much easier too. Last Sunday, I celebrated my freedom from hair by surrounding myself with friends who are close by. I wish you could all be here with us.
Cancer is a bitch. Mine, particularly, is an aggressive one.
What really bothers me about it though is how difficult it is to talk openly about it. The first time I got my diagnosis, my family pleaded for me to think about my husband, whose employment opportunities may be limited by a wife who has a chronic, sometimes fatal sickness. Insurance files it under “dreaded diseases” and in the Philippines, once you have you have it - it’s excluded from coverage because they only make profit when you’re not sick. Society seems to have this unshakable fear of people being mortal. We’re afraid of death. The good news is, cancer is not contagious.
I’m lucky in a sense, I was covered by an excellent insurance company before it became a pre-existing condition. My family had saved enough for me to be able to continue with treatment in Manila when our insurance ended, and when we thought we were done, we moved to a country with socialized healthcare. Healthcare that cares about providing psychological support among others to my family as we battle this disease in a society that understands how tough things can be for a family in crisis. I’ve walked in an out of the hospital, and the only thing that has given me a pseudo heart-attack is the parking ticket.
Not everyone is lucky though. Usually when a cancer diagnosis is handed out, people either fight openly or keep it to themselves like its some shameful secret. There’s a lot of fear. Fear of losing their jobs, which means they’ll lose income and be unable to continue with their much needed treatment. Fear of stigma, because people whisper “she has cancer” like we’re Voldemort or something. Fear of pity, “oh how sad, she’s dying.”
The whole problem I have with keeping something like this a secret, is that it deprives the people around me from being able to talk about it openly — to get the emotional support they might need from others. Cancer patients as well as others with equally chronic and fatal diseases can die in a lot of pain and sadly our usual response is “we didn’t know” or “she never told anyone.”
No one should suffer alone. Not for this. Not for depression. Not for Multiple Sclerosis. Not for the gazillion other things that happen in the course of living. Not even for the flu.
Why am I writing? Why now?
I am dying.
But like everyone else, I don’t know when exactly. It could be months, it could be years…. It certainly isn’t going to be forever because even cancer-resistant elephants die of old age. My timeline just has more milestones and check points. My options are finite.
As much as it sucks, hiding isn’t gonna make it go away. So we’ll face it, and roll with the punches. I’ve named my cancer Sigourney (from the Aliens movie) because Epithelioid Angiosarcoma is just a mouthful. More syllables, more complicated ;). Bottom line, it’s a highly aggressive, chemo-resistant little asshole that likes coming back.
But it’s not just me fighting a battle like this. You know people in my situation. It may not be cancer, it might be something else they’re afraid to talk about. Reach out. Be a friend. Talk about the hard stuff. And yeah, sometimes you’ll get bored - it’s cancer again, its….. again. But you know what, while it is a big thing for us especially when we’re going through it, it’s not all that we are. One day we’ll complain again about less life-threatening things. It’ll be fun again, and less scary. I promise.
When I pass away, people who don’t know me will say I lost my battle with cancer — which I find wholly unfair and not true. It’s not like Sigourney will live on without me. What will live on even without me, are my children, my husband, my family and friends. My sister said it well when told me to remind them that even if my chapter closes, it doesn’t mean their books end. That’s why instead of hiding, I’m taking this time to prepare everyone around me.
Alternating between bedtime stories, I read my children stories that talk about love and sometimes death. One the books on our rotation is called Lifetimes. Every living thing has a lifetime. There’s a time when it’s born. There’s a time when it dies. In between is called living.
My ride may be short, but I’m grabbing this bull by its horns and I am going to LIVE.
If this has moved you in anyway, you can help. Reach out to a friend of yours who may be going through a similar situation. Talk about illnesses openly so that society can learn that the best part of being mortal is being human. Compassionate. Empathetic. Caring. No one should walk this path alone.
I don’t know how to ask for help though — at least not directly. But if you’re in the area, feel free to drop by for a cup of tea or coffee, or read the kids a story. If you have more time, maybe even you can even teach us how to cook a dish.
As for the future, I’m collecting stories: mine, and yours about me. It doesn’t have to be long, even just a snippet of a memory. I’m collecting them so that my kids can get to know me when they grow up.
Life is short and finite. Living is the key.