I began having multiple seizures back to back and the ambulance had to be called. After that, I honestly do no remember much except for my nurse, Jennifer, being so nice to me. I woke up feeling groggy and it had felt like they had given me a ton of pain medications, but honestly, this was all from the seizures. I hadn't slept it all off at this point, yet. So, Jennifer, helped me get in the car to go home. The first few phone calls to update my family were strictly to tell them: "Jennifer got me in the car."
I start Hospice on Monday for Pallative Care. They are able to provide me with more services than my doctor can. I cannot have any treatments for my cancer due to my worsening Fibrosis, so this is a really great option for not only me, but for my family as well.
This is about the point in the conversation where people outside of the cancer community start to freakout and tell me to not lose hope. Just hang on, there will be a new drug, or cure, you're so strong....But they have never lived with the kind of pain we endure or being told the risk to treating your cancer is much greater than you living with it. The loss of self confidence or dignity, that comes with reliance on those closest to us for help with the basics of day to day living. And then there is the fear and despair...That place in the shadowy corners of our minds waiting for a chance to spring to life and render us totally dysfunctional at times. I have come to know that place all too well. That is why I think of death.
I think I am less afraid of death than I am of dying. Dying of cancer tends to be messy...and involves quite a bit. And I don't care how strong any of us are, that kind of pain strips away everything you hold dear in life. At some point, you just want it to end.
But, I am not there yet and that brings me back to thoughts of life. Lately, it hasn't been easy, not by a long shot! But, I'm still hanging in there, so to speak. What frustrates the hell out of me is not doing the things I want to do. I have to keep lowering my expectations and settling for less. Like I said, it's not easy. And even when I have the strength and energy to do more, my husband just yells at me to stop anyway.
And then there are the people in my life that I love dearly. I'm not ready to say goodbye to them yet, I want more time with them. I can only only hope that the pain continues to subside and I can get back some of my lost confidence. I will do my best to keep on living.
When even television seems too much,
And hours go by staring out the window.
I listen to the sounds of my children playing,
I hear life go on without me.
Some days I just wish that days would go by faster,
But as on this day,
Today I am aware that these are the days I'm fighting for.
If I didn't want them, I wouldn't be doing all of this.
I know that this is a tough day. Tomorrow will be one, too.
But I also know that someday, hopefully long from now, it will count as a good day, a great day.
And that realization scares me, too.
But cancer sucks. This diagnosis is my nightmare.
There's salt on my blue jeans
And rain left in my hair.
There is a spot of dirt behind his left ear
And mud on his shoes.
I don't wipe the spot of dirt off.
I stare at it throughout the drive.
I think of when he was a baby, a toddler, a boy
Now he approaches manhood (though he'd tell you he's already a man)
A time when most young men pull away.
He does not.
He still hugs me in public.
He tells me he loves me.
He doesn’t mind if anyone hears me tell him the same.
He is still mine for a little while longer.
As I contemplate the dirty spot,
I hear the words.
They write themselves
As they often do.
The salt, the dirt, the refrain.
“There is so much left to do.”
It is a track stuck on repeat.
Every moment of my life now it plays.
The salt is gone from my jeans.
The rain in my hair has long since dried.
The dirt and mud are gone too.
But there is so much left to do.
I am a role model: my children are watching how I handle all of this. Raising polite and kind children is not enough. My children’s mastery of resilience is as important as any other life skill I can teach them. If I become debilitated by anxiety, don’t pick myself up and press forward, I am teaching them a lesson they do not need.
It’s okay to be emotional or upset at bad news. Complete denial serves no one. Acknowledging emotions of anger, sadness and fear but still displaying strength, stamina and persistence is what I try to do.
I hate the turn my life has taken. I hate that this is what is happening to my family and to me. For now, though, I continue to focus on all of the things I can do, and am doing. I pour my heart out on this screen. Some people think I must be depressed all of the time if I have these dark emotions evident in my posts. I can assure you that this is not what I am like all the time. Those feelings exist, and are important. I wouldn’t be human if I didn’t have them. It’s important to get them out not only for my own well-being but also because I know many readers with cancer tell me I’m speaking for them.
So, it’s not what I wanted, but I’m not sounding the alarms. We watch, we wait, we treat. I consciously do the best I can every day. Some days I do better than others. Some days I have a short temper and take my anger at cancer out on my husband or my kids. I’m not perfect. I apologize to them. I tell them I’m trying my best but sometimes it just breaks through. They see that I am human too. I make mistakes.
What does it mean to “be an inspiration”? A few people have said that to me recently: I am an inspiration. At first I laugh. I guess I’m an inspiration because I’m still alive. Maybe that’s enough.
What’s inspirational about me? Trust me, I’m not searching for platitudes here. I’m trying to get at “what makes someone an inspiration” and why do people think I and so many other lung cancer survivors qualify? There’s definitely more than one day’s blog in this question.
Is it being a mother and worrying about your children more than yourself? No. That’s what every mother does.
Is it summoning strength to confront scans when it’s your greatest fear?
Is it putting a smile on your face when you are crumbling inside?
Is it speaking the words, “I have cancer” to your children, your friends, your husband, your parents,your brother, and all of the people in your life enough times that eventually it starts to sound normal?
The essence of inspiration is being strong.
When you least want to be.
When you are faking it.
Strength.
When you lack it.
When you have to dig deep for it.
When your kids need dinner and you want to vomit from the side effects of medication.
When you are too weak to climb the stairs.
And you don’t think you can get through another day.
Or hour.
Or minute.
Or second.
And you just want the pain to end.
Somehow.
Some way.
Any way.
Just have it go away.
When your pride is gone.
Dignity is gone.
All of it.
Being inspirational means being tough.
It means feeling rotten but not wanting others to.
It means wanting to put others at ease with how you are doing.
It means being a lightning rod for everything bad.
A catalyst for everything good.
A spark.
A resource.
A friend.
A wife.
A lover.
A mother.
A daughter.
Because looking good makes others feel better about how you are doing.
So you put makeup on.
And dress well.
And put a big smile on your face.
So they will think you are feeling good.
And when you switch the topic of conversation, they will go along with it–
They will believe you when you say you are feeling better.
Okay, so maybe I am inspirational. I don’t call it inspirational. I can only admit to the smaller things. The micro things. Inspirational sounds big. Important. It’s hard to accept that one.
But I think I’m convinced.
The reason I’m going to finally concede is that I just realized something:
That was my goal.
Except I wasn’t calling it inspiration.
I was just calling it doing it right.
I was calling it setting an example.
I was trying to show my family, especially my daughter, how you can tackle an obstacle– a big one.
I was just doing my job.
____________________________________________________________
To my dearest children,
Someday you will understand the depth of my love for you. Perhaps it might take until you are adults, perhaps made more vivid if you are fortunate enough to have children of your own. No matter when, no matter how, I hope you will someday learn this powerful emotion I feel for you. You give me strength. You make me fight. You give me joy. You make my heart swell with pride.
I want to see it all. I want to see every day. I want to know every phase of your lives.
You see, I am a quitter.
I know, those of you who know me are probably chuckling and saying, “Yeah, right.”
It’s true.
There are very few things I’ve finished that I have started. I think I was always afraid of not doing something well. I would start and quit… or just not start at all.
But let that be a lesson: there is no such thing as perfect. Try. Fail. It’s okay. Take a chance. You have no idea where it might lead.
Hard work doesn’t always pay off. People don’t always get what they deserve. That’s just the way it goes.
I didn’t finish my Ph.D.
I never wrote a book.
But my darlings, let me tell you something I take pride in: you. Parenthood is a lifelong commitment. There is no backing out, changing your mind, saying “it’s too much.”
There is one job I’m good at and it’s being your mom (I’m a pretty good wife but I do tend to nag even though it’s for your dad’s own good). Your flaws and your talents make my heart soar in equal measure… they are what make you you. You are each so different, so unbelievably deliciously divine in your own way. Never doubt that my heart bursts every time I look at each of you. I’m pouring every ounce of love into you that I can. I’m going to just keep doing it every day.
Being your mom is the best thing there is.
Love you all and truly mean it and God loves you too,
Shanna xoxoxo
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