It has been a somewhat difficult last couple of days as I learned that there is really nothing more that can be done. Because bad news seems to come in multiples, today I learned that there is a tremendous decrease in breath sounds on my right side and my heart rate has still not lowered (on top of all that, I was running yet another low grade fever). For those of you that don't know or understand what it is like to be told there is nothing that can really be done at this point, it is like having my heart collapse into my stomach; the walls close in and I feel a primal panic and desperation that I imagine an animal must feel as it realizes it's about to be consumed by a predator. I feel the finish line to my life approaching even faster, and all at once I think of all that I will miss in my children's lives and then all I must do for them and my husband before my race is over, and then an intense rage at the gods for the injustices of life, and then a fierce jealousy and hate for those who do not have to live with these fucking diseases, for those who get to live their carefree existences, who get to have more children and plan for their retirement and obsess about what from my vantage point seems like the most trivial problems, and even for those who do live with these fucking diseases but who are for some baffling reason cured. The fear, sadness, anger, and bitterness hit me in mighty wave after wave, knocking me down so that my head and heart are pounding and then leaving me sobbing, curled up in a fetal position that is supposed to protect me from the emotional onslaught, but nothing can protect me; nothing can blunt the pain; the only thing to be done is to feel it; bare it.
Curled up in the fetal position is how my children sometimes find me. They always ask me why I am crying and I always tell them the same thing, "Mommy is just really sad." My sweet and uniquely children always give me the best hugs and then tell me, "Don't worry mommy. We are still going to love you when we grow up." You see, I do fear that in my absence, my children's memories of me will fade and they will love me less and less over time. Their words make me weep with a renewed vigor. Kevin always acts so calm and strong, even though I know deep down he is clearly upset. Even so, sometimes I think the intensity and ferocity of my emotions are too much for him, especially when he has to come to terms with his own. Usually, as expressive as I am in writing, I have the same compunction to verbally unload my heartaches to those closest to me in life because I know that for me the process of verbalization is healing. But not now. I didn't and still don't want to talk to people who have my diseases, at least not anyone who is in a better position than I am, and I imagine anyone who is in a worse position doesn't want to talk to me either. My self-imposed reclusiveness and isolationism is partly because of the jealousy and hate. It's also partly because I can't imagine that anyone who is ensconced in his or her merry little life, despite claims to the contrary, would want to be brought down by my depressing diseases. I know I sure don't. No one wants to talk or think about illness and death. Nor can I imagine anyone saying anything to me that would be remotely comforting or helpful. I don't want to hear about the promise of immunotherapy. I don't want words of sympathy. I don't want sage words of advice about how to live the remainder of my life. I don't want to talk about it. I don't want to answer any questions. I don't want to be forced to explain anything to anyone. Whatever explanations I give and whatever information I divulge must be on my terms at my initiation, not because someone asked or because I was forced into some social interaction. Perhaps a growing reclusiveness and isolation, at least emotionally if not physically, is what happens when you get closer to death, as you understand more powerfully than ever that this journey to the end is one that must be made absolutely alone. It feels as if whatever comfort there is will be found from within, rather from without, from private conversations with my innermost self and of course, God.
So, all I have left is my writing. My writing is part of those conversations.In truth, this blog entry, more than most of the others, is for myself. A much needed release...my mediation...my contemplation. It does not matter if anyone reads it. It's for me.
I've been crying a lot. I wonder if that is in part to the new anti-depression medication they put me on or if I am simply overwhelmed. I find myself crying in bed...or crying anytime I start to talk. Shut-up Shanna. I have fallen into a depression-based abyss, but since being out of the hospital, I have forced myself to interact more with the world.
I saw my primary care physician (Dr. Glenn) for a hospital follow-up. There are definitely decreased lung sounds in my right lungs and he hears a ton of crackling (the pulmonary fibrosis sounds like foil) throughout my lungs. He has never really heard PF before, so he is learning right along side of me. He referred me to Home Health since Hospice is not where either one of us think I need to be at this point. The great thing about Home Health is that while my boys are both working, they will help me do my shopping, clean my house, help take me to appointments, and do other errands that I simply cannot do.
I will also start Occupational, Physical, and Pulmonary Rehab. If I have to have a shortened life, at least let me fight for time. And that is exactly what he is working on helping me to do.
I will still get to teach my children (albeit with rest in between) but I will not have to continue this journey on my own.
During the first night after my cancer diagnosis, as I lay in that desolate bed in that hospital hell, unable to sleep as my fear threatened to suffocate me, an unbidden image came to my mind in I imagine the same way some people have images come to them when in deep meditation. That image has persisted through all these months. I see myself walking alone down a long narrow passageway with towering and ancient stone walls on either side of me and atop those walls are menacing gargoyles armed with bows and arrows aimed at me, gargoyles that will come to life any minute. I realize now that I am walking to my execution. But despite that fact, I walk deliberately, my head unbowed, always with pride, grace and dignity. My mind unconsciously often returns to this image for I know now that it has become the metaphor for my cancer and IPF journey and for my life in general, or at least the metaphor to which I aspire and have always aspired.
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
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
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