Perpetual Flame

I have been in bed pretty much the whole day trying to get rid of this horrendous fever and sore throat (I'm pretty sure I have strep). I hate my weakened immune system because I catch everything. My little man felt bad all day yesterday because he thought he gave it to me. He wore a mask and everything while he was sick....but with me having cancer and IPF, invaders can get in without even asking (how rude). I assured him it wasn't his fault and that mama just simply catches everything that everyone else has. It kinda really pretty much sucks. My fever has ranged from 102-105 since yesterday. But, at least Ibuprofen has worked to break it so no trips to the hospital yet! 

I am looking forward to this weekend, so I have to get better. I asked my best friend to take me to get my hair fixed and to do my make-up so that I could feel pretty (I am finally going to have a girls day). I really don't know what a girls day is because I do not socialize much. I am pretty awkward. This girl, Kasey, I have known since she was eight years old. We share quite a bit of history together. She did not have the best home life. The moment she met me, she hugged me (I was fifteen). I used to take her to play in the rain, to swim, cook her dinner (she would help), play dress-up with her, and just be there for her. Twenty years later, we are still the best of friends. Life has not been kind to either one of us....so in a way, you could say we are kindred spirits. She lives just a little over forty miles away from me now so visits are not nearly as impossible. She has had to endure heartache in ways that a woman should never have to bare, yet she continues to live. She continues to want to better herself and make something more out of herself. The pain that she feels is incomprehensible and sometimes all she wants is someone to just listen, or leave her be. I do not think that I could survive the trauma that she has faced in the past year. Yet, she is still standing...and that makes her a very mature and strong woman with the faith of a mustard seed. Kasey, don't ever give up because I know one day you will move mountains. You have already inspired me in my journey to keep going. Es la ley (inside joke)!

Many have described me as strong and for all my life; I too would have described myself as strong, I have always prided myself on an inner toughness, courage and tenacity that have allowed me to overcome being bullied as a child, becoming a mother at the tender age of 17, and to achieve what I call personal success. But, I have never felt so spiritually weak, defeated, and destroyed as I have since being diagnosed. It was devastating for me to witness and acknowledge the limits of my toughness, tenacity, and courage last weekend after I talked with my doctor and the trauma of that day still haunts me now as I seek to rediscover a fragile physical and emotional strength that might again crumble like a house of cards at the next bit of bad news or whatever else lies in wait for me in this relentless war. This fundamental belief and confidence I've always had in my own ability to handle my problems, to rise above adversity, have been shaken to the core, and I'm still trying to figure out how or even if I will ever be able to rebuild that faith in myself. 

I’m not sure that God or the forces of the universe send any of us targeted messages; I simply don’t know. Although I do believe in a higher power, I don’t have that kind of unquestioning faith that so many do that God protects or speaks to any one person. Maybe I over-analyze the events of my life to find meaning where none exists. Maybe things just happen because they just happen, full stop. But I swear there are times when I feel with an intuitive kind of knowing that defies all logic and reason and for much longer than a fleeting moment that God (which for me is the manifestation of all the incomprehensible positive forces of the universe) indeed is watching over me and wants me to understand, and even share with others, some fundamental truth about the human condition and experience. As improbable as it seems to me that God would interfere with the mundane affairs of billions of humans (much less little old me), I also believe that God is a concept not graspable by the limited human mind. I suppose that that transient knowing in the face of rational doubt is what one would call faith, tenuous as it may be. Last Saturday I had one of those times again, over the course of the day in which I can say, in my moments of faith, that God was speaking to me, and in my moments of doubt, that I have carved spiritual meaning and insight from a collection of random incidents.

And then there's hope. It's a word that's bandied about so frequently when you have cancer, but not when you have IPF. I'm confused on whether I should have hope or not since I have both...one I might could survive, the other will definitely kill me. “You cannot give up hope,” Kevin has told me many times. “There’s always hope,” more than one cancer survivor has told me. People have recommended to me the book the Anatomy of Hope, one oncologist’s account of how important it is to maintain a realistic hope, littered with the occasional tale of a patient’s improbable defeat of cancer against all odds. The fuzzy concept of hope, this feeling like something desirable can be attained, is so prevalent in the world of cancer, that it seems to me like it takes on a holy quality that people embrace purely based on a religious-like faith, like if you have it, it will sustain you through your darkest hours and maybe even cure you. Because the word is invoked so often, hope can also frequently feel like a cliché. After all, how can you say there is always hope when clearly at some point death is imminent – where is the hope then? If you know me, or even if you have read just one of my blog posts, you know that I’m not one to accept triteness and clichés. I analyze everything in an effort to determine whether the cliché is some empty platitude or whether it actually contains a profound idea worth incorporating into my world view. “Everything happens for a reason”. This post is of a similar vein, reflecting my months-long contemplations about this illusory sentiment of hope that people seem to love so much without really understanding why and which people seem so insistent that I should have. Must I really have it? Is there indeed always hope? Is it truly a positive force? Especially when I know I am going to die.

In the past six months, I’ve often said, Fuck hope! I don’t need it and I don’t want it. I know, it is heresy in the world of cancer where people think of hope and God as one and the same. But, I also have IPF! Cancer already crushes hope, leaving a wasteland of grief, depression, despair and a sense of unending futility. In the midst of an absolute conviction that I would never live the life I wanted or expected, I endured the sick churning feeling in my stomach and the protracted crying fits, utterly incapable of seeing or thinking beyond that minute, that hour or that day, never mind some distant improbable future. Now...add on the IPF.

“Hope and fear are two sides of the same coin.” I’ve been learning the truth of that statement ever since. When there are expectations, dreams and hopes, fear always tags along, fear that the hopes will never be realized, fear that the heart will be broken, fear that death is close at hand.Each time my heart is broken in this war, out of a primal sense of self-preservation, I vow that I will never allow myself to feel that kind of debilitating disappointment, devastation and pain again. I can’t bear it, I tell myself. It is in the darkest moments of my war and as I recover from the latest defeat that I say fuck hope and forbid my mind and heart from creating again any happy visions and images of a distant future that is entirely unlikely anyhow, because I’m afraid to hope; I’m afraid of having my dreams shattered again so that I have to mourn once more my absence in my children's lives, so my heart doesn’t break yet again at the thought of my children and husband being without me, so I don’t have to grieve anew the life that might have been. And so in my darkest moments, I don’t cling to hope to sustain me as so many say I should; rather, I reject it.

Hope is a funny thing though. It seems to have a life and will of its own that I cannot control through the sheer force of my mind. It is irrepressible, its very existence inextricably tied to our very spirit, its flame, no matter how weak, not extinguishable. I’ve been through enough ups and downs on this roller coaster to know that no matter how vehemently I reject hope at any given point in time, no matter how I swear that I will no longer dream of the future, hope does indeed spring eternal. But no more dreaming of retiring with Kevin; no more imagining holding grandchildren in my arms. From now on, it was about establishing a concrete specific and entirely achievable goal and if I made it to that goal, then I would think about the next attainable goal. In truth it was my coping mechanism. I needed to toughen up; I needed to change my expectations if I were going to get through the inevitable future setbacks; otherwise, I would be destroyed emotionally. But even to think about eight good years was in itself a manifestation of a resurgent hope.

Until cancer and IPF happened to me, I never understood the vicissitudes of hope; I never understood the joy, terror and despair it could bring; nor did I understand its incredible resilience. The closest I ever came and the best analogy I can come up with for those who have yet to live with cancer is in the context of the search for an enduring and romantic love, something that is nearly universal to the human experience. Before Kevin, there were a couple guys, no one terribly serious, certainly no long-term boyfriends. But there were one or two who truly broke my heart, creating the kind of ugly blubbering and depression that embarrasses me now when I think of it. Nothing quite hurts as much as young love, when it seemed like my entire sense of self-worth was tied to these one or two guys who so brutally rejected me, leaving me feeling utterly unlovable. Each time, I swore that I was done with men, that I didn’t want to put my heart at risk again, that I didn’t need a man to make me happy. And each time, the heartache eased and I found myself willing to risk once more. Time would make me forget the pain. Time and experience taught me new strength and courage, giving me the fortitude to put my heart at risk again and again until I finally met Kevin.

While it’s true that to have hope is to live in fear, it is also true that to have hope is to live with courage. It takes incredible courage to love again after one’s heart has been broken. It takes even more courage to have hope in the face of a life threatening disease. I don’t think my ambiguity towards hope is settled. I think I will always vacillate between embracing and rejecting it. I think I will always live somewhere in between today and eight years and forty years from now. But what I do know about hope is that it is an everlasting indelible part of my spirit; it is there even when I feel hopeless, a perpetual flame. I have felt its faint warmth even in my darkest moments, even as I’ve sought to squash it. I know the flame, however weak or strong, will burn so long as I live And near the end of my days, when it is clear that more life is not possible, my hope will evolve into something else, into hopes for my soul, hopes for my children, hopes for the human race.

Love you all and truly mean it...and God loves you too,

Shanna xoxoxo

LUNGevity National Hope Summit: I'm participating in an event to raise money to fight lung cancer—and I need your help!
I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.
Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.
Please join me in my efforts to stop lung cancer—the leading cancer killer—now!
http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15728
Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna

Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness

My Go Fund Me Page (any and all donations will help with my medical funds)gofundme.com/hope4shanna2016