I started writing about my experiences as a young wife and mother of three with lung cancer. I began by posting my experiences on my Facebook page. Soon my friends and relatives were asking how their own friends and relatives could read my words. I was writing about the darker, richer emotions I was feeling-aimlessness, fear, despair- but also the dogged commitment to always be strong with an enthusiasm for life.
I wrote about death, life, family, sadness, joy and sorrow. I thought it would only appeal to people with cancer, but I was wrong. Instead, the appeal has been far more universal. I receive emails from people who not only have had cancer themselves, but also those with family members who have had it. I hear from people who have experience with other illnesses, and also those who just want to know more about what it is like to confront mortality at an early age. The far-reaching emotional impact of illness affects many people, and they connect with my work.
In April of 2016, I learned that my cancer had metastasized to my lymph nodes and my bones and now I have stage IV lung cancer on top of pulmonary fibrosis. Again I feel the need to communicate not only about the disease itself (true awareness) but also about its impact on my young family. My posts often give my insights into how to raise children who are resilient and can cope with inevitable hardship. The blog also will be a record of my love and devotion to my children. There is nowhere I would rather be than here with them.
Make no mistake, I am proud of what this body has done for me.
My three children top the list.
But now I must focus on some of its cells,
now malignant,
throughout this body,
growing at a horrific pace.
My body has now become a personal science experiment.
Sometimes, when things are going well, you could look at me and have no earthly clue.
You see,
Beneath the pretty lies ugly,
the ugly truth of cancer
and what it has taken from me.
While some may be able to go on,
move on,
forget,
I cannot.
My body will not let me.
My daughter and I talked about my cancer. We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.
I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it’s normal, that sometimes fear makes you brave enough to do things you don’t think you can otherwise do.
I told her that I understood that sickness could be scary, that I didn’t want her to be afraid of me as I got sicker someday. “I would never be afraid of you, Mom. I’m only afraid of cancer,” she said. My heart squeezed and thrashed and the tears flowed.
I told her that for now I want her to live her life, for our house to be as normal as it can be for as long as it can be. I told her that eventually I might need someone to help take care of me. “I will take care of you, Mom. You’ve always taken care of us,” she said. She said she liked that I was open about it. That people knew. She thought it was best to be honest and appreciated the offers of support she’d received from friends and adults she knows.
I told her that what we were doing, lying there talking for an hour together about this, was the most important thing we could be doing today. I told her there wasn’t anything more important to me than my family. My job is to help them deal with this. Whatever this is.
Denial won’t change the course of things, and often makes things worse.
Secrecy is bad. Sharing and supporting are what I champion. And I know that de-mystification is a constant effort. I will continue to teach my children daily. I said I hoped that somewhere in all of this she could see how important science and medicine are in my world. And that if she does decide to be a doctor that is a noble effort. She will make me proud in whatever she does. As will my boys.
The funny thing is how much better I felt after we talked. The conversation was the hardest one I’ve had. The topics are gut-wrenching. But shining the light on them, on this disease, on what happens next, is the only way I know to cope, to help, to keep going.
We talked on and on as I combed my fingers through her long hair. I stroked her smooth, soft cheek. She was giving me strength.
And what I realized about people saying I should just wait because she’s going to eventually act out:
Waiting is a luxury.
Waiting means having time.
And that’s what I want most in this world right now.
It seems like you can’t rank anguish. You shouldn’t be able to “out-suffer” someone. How do you quantify misery?
And yet, somehow we do.
“My problems are nowhere near as bad as yours are.”
“I feel terrible complaining to you about it when you are going through so much yourself.”
I hear these types of comments all the time.
I make these types of comments all the time.
Placing ourselves in a hierarchy of pain and suffering serves to ground us; no matter how bad our situation is, there’s comfort in knowing there is always someone who has it worse.
And when I found out that my cancer had metastasized, I could not calm myself with those comforting refrains anymore.
Now it is terminal.
Now they can’t remove the body parts it is in.
Now the debilitating treatments are permanent and I don’t have the possibility of returning to anything close to a normal life again.
.
I have often said I have hated becoming anyone’s negative reference point. “At least I’m not her” people now often think of me. I always thought that meant they pitied me. I didn’t want that. But now I realize that it is okay for people to be glad they haven’t walked in my shoes– in reality, that’s what I want. I don’t want anyone to be where I have been and where I am; I’d like to be the lightning rod that keeps other people safe. But we all know it doesn’t work like that.
Denial has never worked for me.
Denial doesn’t kill cancer.
I still believe it could be worse.
I know that is true.
And so, for today, I focus on the fact that I’m not the last one on line.
On the really challenging days sometimes that knowledge is all I have.
And on those days, that knowledge is enough.
Each day is different. Each moment, too.
It still seems surreal, this diagnosis of metastatic lung cancer.
It’s strange how quickly the horrific can become regular.
I start making lists of things I need to do. I prioritize them.
It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.
The small moments are the ones that bring tears to my eyes. Tristan’s little voice saying, “I love you, Mama. You’re the best Mama in the whole wide world” is enough to make me misty.
I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.
I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.
My motto is that I will do as much as I can for as long as I can.
And, yet the morning comes.
Each day is one more than I had before.
But let's be clear: There's no joy in this disease.
My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.
I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.
I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.
I walk past people on the street and know they have no idea what is going on inside my body.
Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible.
I’m still processing. Reeling. But while I’m doing that I’m living.
Love you all and truly mean it...and God loves you too,
XOXO
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