"It sucks and it's going to suck, but try not to get so caught up that the good moments become poison too. Hell, if you have a good minute, congratulate yourself. Because, at this point, feeling like yourself for even a minute is absolutely magical. Over time, good moments become riddled with evil. In the moments you should be savoring, you spend time wondering how fall you'll far this time. You feel alone. You realize how much your life has changed. So, what do you do? You pick yourself up and start to rebuild."
Above all, I'd like everyone to know that I am grateful for staying alive as long as I have. My healthcare team at UT was wonderful, but they no longer take my insurance so I will be going to Parkland and seeing Dr. Fitzgerald (who is extremely excited to take on my case). I am thankful for the support system that I have in place. But, I do not think being grateful means that I, or anyone, should stop asking for improvements in cancer care and prevention. I demand of science more concrete cancer prevention than the typical "eat right, exercise, don't drink or smoke" mantra that also helps prevent practically every damn human disease. I think it is ridiculous that the recommended action for a woman with an increased likelihood (like a gene mutation) of getting a gynecological cancer is removal of the female organs. I mean, if I had a gene mutation making me likely to get brain cancer, should I remove my brain? An absurd extreme, yes, but do you see my point? I realize that cancer is a complex, difficult to understand illness, but after thousands of years of knowledge of a malady we now call "cancer", science should be further along in the understanding of it all.
*Note: Dude, I’m not even going to follow a thought about how often prostate or testicle removal is performed in comparison to female reproductive organ removal FOR PREVENTATIVE REASONS, because I know it will involve a lot of figures about which cancer occurs more often, and numbers about why science researches one over the other, women’s vs. men’s health issues, blah, blah, blah, so I went with brain cancer in my example—cancer has got to stop dividing men from women,we already feel the healthy-from-the-sick division too much.
I know things like gene testing and radical surgery are the only tools in the box that the medical industry has to use against cancer right now, and the industry, as well as patients, want to be proactive...testing and surgery give the illusion of "doing something." So, I completely understand why the test is sold as something that can provide more information for people like myself, who like to gather as many facts before making any rash decisions.
Yesterday, my doctor came into my hospital room and spent two hours talking to me about my lung diseases. Less than 1% of the world's population has what I have, and because my diseases are so rare, they are not curable. I cannot have chemo or radiation because those regimens will destroy any healthy tissue I still have left in my lungs (and I cannot afford to lose anymore lung function). And, sadly, he told me yesterday that I am not a candidate for a lung transplant due to the many issues involving my lungs (stage IV lung cancer, emphysema, IPF). I want to take control of my illness, but now I know that I cannot. There is nothing I can do to stop the progression or slow it down. The pulmonary fibrosis is suffocating me to death. Basically, the tissue around my lungs are hardening and I am slowly being suffocated by my own lungs. And then the lung cancer is putting pressure on said tissue...and so on and so forth. I am just a mess. But, I can no longer go on being afraid of what will happen next. I have to find my new normal (still searching for that) and accept it for what it is. I have to be happy.
I might have a bit of self-pity because cancer and pulmonary fibrosis landed on me, but that has not stopped me from taking my medicine like I am supposed to, actively monitoring my blood pressure and O2 levels, and going to all of my appointments no matter how unnecessary they may seem. I have to do the fighting for not only me, but my family as well. And though my life will be cut short, I have to do whatever I can to stay alive for as long as my body will allow. I am never going to say that being this sick has not totally sucked, and I will never stop being angry that I have such serious illnesses, even as I move on with my life. For me though, it has less to do with self-pity and more to do with being realistic, but hey, that's just me.
I would not classify myself as passive. There are indeed passive patients, and in the beginning, I am sure I was, just going from test to test without giving my input. But, I learned to take control, to be an active patient. Even though nothing else can be done for me, I still define myself as a patient. I still have to haul my ass to the doctor to make sure I am not getting worse. These appointments are made for me, without anyone bothering to ask me if any days or times are convenient. I am a patient, and I am to show up at the appointed time...that's that.
So, I will continue to call myself a patient until doctors have given up on me, or at least until I think of some better word. What I will do in the meantime, as a non-passive, non self-pitying person who has cancer and IPF, is use the anger to become an advocate to push medical sciences to figure out the causes of cancer and IPF, to develop better methods of detection and treatment, and to be the one in the dark corner in the white ribbon world where I whisper to other lung cancer patients, "If you don't have anything cheery and white to say, come sit next to me."
I have to tell you, every twist and turn of this experience always reveals something new. There is the physical aspect: physiology, biology, and chemistry. There is the psychological aspect: fear, resolve, sadness, anger, uncertainty, and happiness. And then there are the intangibles. You could argue these are part of the psychological, but I disagree. By intangibles I mean support and empathy, both real and virtual.
I've been having a hard time writing lately; I've been mentally blocked. I'm even having a hard time reading some of my favorite blogs. I'm chalking it up to a temporary fatigue. And then I realized I am just sick of EVERYTHING.
It’s not easy thinking about our personal demise and harder still to discuss it. However, my own experience has been that the things we fear the most are those which we don’t understand. Talking about death–making it my familiar–has eased much of my personal anxiety. In the end, nobody loves this life of mine as much as I do and self advocacy is key to survival. Woody Allen once said that 80% of success is showing up and when it comes to tomorrow, I will not be a no show.
I know a lot of folks who feel dogs might be better than us humans, but not me. Dogs are great but people are my favorite animals of all. Nothing is more interesting to me than other people.
That doesn’t mean I turn a blind eye to the fact that we, as a species, do a lot of shitty things. To the planet, other creatures and each other.
The thing is, I believe in us. People are capable of incredible empathy, kindness, generosity, grace. We can be so smart, creative and industrious. Brave, courageous, strong and tender. Altruistic. Most of us care deeply about each other, and that is perhaps our greatest ability of all—love.
However, due to the pernicious nature of my disease I am unable to relax. As I once said to a friend whose cancer had taken a turn for the worse, sometimes the thing that’s trying to kill you just keeps on trying.
Two nights ago a shooting star gave me the courage (abandon?) to allow myself to believe that I could live another thirty years. I mean, what’s the harm? Suddenly my future stretched before me like a Texas highway—almost endless.
It’s a view that I could look at, well…forever.
Love you all, mean it....and God loves you too,
Shanna xoxoxoxo
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
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