I have began feeling the effects of the Fibrosis over the past two days. I can no longer be off my oxygen for even five minutes without having to gasp for air. To not be able to breathe is terrifying. Hopefully, the only reason I am having as many issues as I am having is because I have an upper respiratory infection and is not something worse. Pulmonary fibrosis and an URI do not go well together. I called my Pulmonary Oncologist and he told me to bump my oxygen up to 4 liters until I can get to the hospital (which won't be until tomorrow).
I thought having to deal with lung cancer was bad...until I had to come face to face with this demon. And it is because of all the scarring on my lungs that I even got lung cancer in the first place. I am trying hard not to throw a pity party for myself tonight, but I am getting sick of always being sick. I feel like I am missing out on so much. And my kids are missing out on having the best mommy I can be. It is quite frustrating.
I was trying to figure out why I am sending these essays out into the blogosphere. Writing them certainly helps me process my experiences and feelings, but why share this with everyone else? People often ask me about my health and I want to share my story, but there is more going on than can be reasonably included in one conversation. And I really never know how much information is too much. I don't want to be a bore or a killjoy so, over the years, I have had a tendency to keep things to myself. I now find that I cannot contain everything that I am feeling, and the only way to manage this kind of emotional storm is to get it down on the computer.
But it's more than sharing the details and keeping people up to date. I am dying. At first I thought it was happening slowly, but over the last few weeks it seems like I have boarded a rapidly moving train: the VVF to death. I feel like I am in a race against time. I have so many things left to do.
I try to cram in as much information as possible. I've already taught the kids about sex and their bodies. And I try to teach them as much as I can about cooking, "Stir the sauce, but don't slosh it." I think they are grasping the concept of love through their father and I. One day I was talking to my daughter and asked her if she knew why I married her dad. She said, "no." "Because he made me laugh," I replied and then added, "And he was a good man. I knew he would never hurt me. Kaitlyn, looks fade, but true goodness and a well-developed sense of humor never go away." There is no way for her fourteen year old brain to fully process or grasp what I am saying to her. I just hope the words stay with her until the time comes when she can fully understand them.
Our lives have a running narrative of lessons; I hope they are listening. There are so many things I want to teach them. So many things left to do before I am ready to go.
But who am I kidding? They will never be ready and neither will I.
I will be 36 years old in June---almost middle-aged---and yet, I still call my mother when I am sick. I crave her embrace when I am feeling at my worst or the world has been unkind. Kevin tries so hard to comfort me, but often she is the only voice I want to hear. When do you stop needing your mother? When would it be okay to let go? Will I ever feel like I have done my job and that I will not leave my children un-anchored in the world?
This is what it is like to be dying. I try so hard to be present in the moment. I try not to let my death be so much a part of my life. But, it seeps into every crack and crevice. It's always there...not a figure carrying a scythe, but a feeling of loss and sadness. I suppose it sounds like depression but I cannot imagine this is merely misfiring neurotransmitters. Rather, I suspect this is how dying is supposed to feel; an acute awareness of everything that you and your loved ones have and will lose when you pass away. Every moment is simultaneously beautiful and painful.
Dying sucks. Sure, I have been given insight on how precious life is and I have learned to cherish life's little details. I think I have become a better person for it. But the price is really high. It's the inability to stand in the kitchen creating lavish dinners for my family every night. It's letting go of my dreams of seeing the children graduating from college, marrying, and having children of their own. It's letting go of the daydream of swinging on a porch swing side-by-side with Kevin and resting my head on his shoulder long after both of our hair has turned white.
I am sad for me. But I am much, much sadder for the kids. It's so unfair, though it could certainly be worse.
Now it is time to kiss my angels goodnight. I know they will miss this just as much as I will. I will thank God for giving me one more day with them and let Him know how truly grateful I am. And I will pray for peace and discernment and strength for all that lies ahead. Not just for me, but for Kevin, my mom, and the kids.
Love you all...mean it,
Shanna xoxoxo
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