God Just Laughs

This will be the longest blog I have ever written. I have so much to say, so much to let out. We called the funeral home today to get a price on my funeral. It made Kevin literally sick at his stomach to make that call. For everything, it will cost a total of $7500 but that is only if I want to have a casket. I think I am just going to have a memorial service with people speaking about my life and remembering me in a positive light. I do not want people to see me in the saddest form...I want them to remember me for the person I was. I hate that we even have to discuss this topic, but unfortunately, death is a part of life and it is a huge part of mine. When I get my social security, I am going to go ahead and pay for my services so that Kevin does not have that added expense. I do not need him more stressed than he already will be. 

When my home health nurse came yesterday, she discussed the importance of having a DNR. I have a living will and a power of attorney, but I do not have a DNR. In my humble opinion, at my age, I do not think a DNR is a necessity. If there is a way to resuscitate me, then I want them to use all measures. I think a DNR is more for someone at an older age. I want to fight for my life...even though I know that at some point fighting will no longer be a choice for me. So, I turned down the DNR and am going with God on this one.

In the first twenty-four hours after my diagnosis, every time I thought about my children, unrelenting sobs racked my body. I had often speculated about the type of adults my children would become one day. The thought of not being there to see whether or not Kaitlyn would indeed grow into a bright, sensitive, aloof beauty who helped animals, or Damion into a strapping, handsome, smart man who designed new video games, or Tristan into a gorgeous blue-eyed, witty, intelligent, charismatic spitfire who turned into a doctor made my already pained stomach hurt even more and my heart ache as nothing else could. The thought of the three of them crying inconsolably and in futility for me, for me to lie with them at night and kiss their boo-boos away, for someone-anyone- to love them as much and as well as me, tore my insides into  a million ragged little pieces.

In those early days, I could only see my children as casualties of the war I had begun fighting, a war I hadn't chosen. We were all victims of this war with them being the most undeserving.

Indeed, we will grieve not for what is lost but find strength in what remains behind, through the bonds of human sympathy born of common suffering and in our faith in something greater than we can conceive of. And, no doubt, finding strength in what remains behind includes rediscovering the magic and wonder of our powerful children and letting them help us walk through our darkest hours.

Our lives are an intricate, chaotic weave, where threads touch, entwine, and twist, and then diverge to maybe come together again. Many threads are joined for a long time representing the long-standing relationships that typically exist between siblings, spouses, parents, and children. More threads touch but for just a second, much like my best friend Kasey's girlfriend Kourtney. But in that short period of time, she has completely changed my life. But sometimes, however brief, the intersection of two threads, can have a profound effect and impact on the lives represented by those threads.

Although I didn't start my blog expressly with the intent of helping others, I am finding that it is having that effect. Young mothers also inflicted with lung cancer and lung disease have reached out to me to tell me how my words are lifting their spirits. Depressed and anxious ridden people do the same. I have even impacted people who have simply just had a bad day. Friends who have lost loved ones to cancer or who have faced illness or other challenges have told me that what I write has such resonance and serves as a therapeutic purpose. As I continue to struggle with the "why" question in all of this, as in what is the karmic reason for an otherwise healthy 35 year old woman having stage IV lung cancer, idiopathic pulmonary fibrosis, and emphysema, I am comforted by the knowledge that good like that this is resulting from my diagnosis. For the first time in my life, aside from raising my children, I feel like I am doing something important. Like I have a purpose. The knowledge that my thread of life might be touching so many other threads out there (facilitated by the awesome power of the internet and social media), that I might be having some positive effect on the lives of others going through tough times, makes having these diseases a lot more bearable. More importantly, it gives me the joy, strength, and inspiration to fight back. 

I have been moved to tears by the kindness and support that has been shown to me and my family. People I barely even know offer to clean my house and help me with anything I need when I am too sick to even lift my head off the pillow (thank you Debbie). I could never pay everyone back for their generosity of heart. A friend who encouraged me to write this blog said that good writers have a lot to offer the world. So, as a way to show my gratitude for the support I've received, I am going to pay it forward the best way I know how, by writing and continuing to share myself with honesty, in the hope that my words will resonate with even just one person.

My dear friends and family and those of you that I do not know personally, please share my blogs so that I may be someone's hope. I've learned that it isn't until you are so personally touched by cancer or a terminal disease that you realize how much havoc cancer and other diseases have wreaked on the lives of so many. People just don't talk about it because no-one wants to actually discuss such painful and depressing topics. So, people hurt in silence, visiting online forums and chat rooms, searching for accounts of people who share their stories and experiences. I know because I have done this many a night since my diagnosis. I guarantee that within your networks, there are people that have been or are being terrorized by illness.

I used to want to live on a deserted island...being a self contained, independent, strong individual who needed no-one.  I was young and had this whole "I wanna do it myself" attitude. I think most kids have that attitude. Part of that living on a deserted island was attributed to youth. A lot of it though was attributed to being bullied. I could not stand the fact that I was so nice to everyone, yet everyone laughed and made fun of me. A deserted island would have been perfect.

And now I have stage 4 lung cancer and advanced lung disease, and I am asking for help...and I want to help others. I don't want to be on that island by myself anymore. Strength as it turns out, is not embodied in being a self-contained, independent individual. Rather, strength lies in the recognition of one's limitations, as well as the understanding that each of us as members of the human race are united by common emotions- joy at the birth of a child, grief after the death of a loved one, fear in the face of a terrifying disease- and by virtue of that bond, we are each capable of amazing compassion that will inspire others in their moments of deepest despair. British poet, John Donne, conveyed these ideas more eloquently than I ever could in his poem "No Man is an Island",

No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thy friend’s
Or of thine own were:
Any man’s death diminishes me,
Because I am involved in mankind,
And therefore never send to know for whom the bell tolls;

It tolls for thee.

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We make plans and God laughs. He has other plans for us, and we do not know what those plans entail. I certainly did not know those plans included the life changing phase my family would have to be going through because of me. We often think we are entitled to have the life we dream of having, especially in a country as rich as ours We're entitled to find a mate and have children because that's just what most everyone does. We're entitled to work hard if we so choose and buy homes. Even second homes. We're entitled to go to bed every evening confident that we will wake in the morning. But cancer and IPF has made me understand anew in a way I hadn't before that I am entitled to nothing, that everything in life and life itself is a privilege.

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I wanted to write last night, but I have been falling asleep extremely early lately. Of course, I always wake up at around 3 A.M. and wind up throwing up in my mouth (yeah that's always pleasant), so my husband figured out that if I drink a glass of chocolate milk before bed that will actually stop. The only issue is, I have been forgetting to drink my milk. People have called and texted me on Facebook and I have not gotten back to them right away ( I have honestly been too tired to do much of anything). The last time my nausea and fatigue peaked was today. FU is what I title today. I could not even lift my head to teach the kiddos today.

Swallowing room temperature water felt like swallowing glass and the first bite of food set off the nerves up and down my jaws. When I grasped my brush to blow-dry my hair today, a thousand needles pierced my fingers. Shortly afterwards, both my arms started tingling. Neuropathy is a bitch and one of the side effects of cancer. Unlike nausea, there are no medicines to combat neuropathy; one just has to avoid as much cold as possible (including things like stainless steel and faucets). Neuropathy can be permanent so it is a side effect that is monitored very closely.

Days like today prove that fighting cancer and IPF can be a full-time job. I am so glad that I have a family that is willing to go above and beyond to help me or I do not know what I would do.

I am also so grateful for all the messages of support from all of you from all over the world, from my dearest friends and family, from long-ago friends with whom I've fallen out of touch with and even people I have never even met. There are too many for me to individually respond to, although I try. Know that I keep you all in my heart.

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I've seen a lot of items on blogs lately listing the silly things that people say to cancer patients. The issue rears its ugly head every so often. I will not stop commenting on all those blogs that we need a list of snappy, or thought provoking (as in silencing the person who makes the comment) comebacks that we cancer patients can use when it happens. I wish such a tool had been handy for me upon diagnosis.

Until then, I do have some advice for those who ask, "What can we say to our loved ones with cancer?"

Don't say anything, it is no longer your turn to talk. It is THEIRS.

The point is, cancer patients will usually ask for it when they need an actual answer. (Not always, however, and sadly, that is where it gets tricky). When a cancer patient begins honestly expressing his or her fears, please, I beg you, do NOT answer with those hollow platitudes like "Think positive" or "I'm sure it will be alright". No, it is not alright and do not tell us how to think. No one is allowed to tell another how to think. Ever. Period. End of discussion.

Again, this is the time that YOU listen to the patient. If you think their thoughts are going in a dangerous direction, get professional help, do not tell them just to cheer up and think positive, you are not helping if you do. If they are dangerously depressed, those trite comments are absolutely useless. Don't speak, listen.

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This is about the point in the conversation where people outside of the cancer/IPF world start to freakout and tell me not to lose hope. But, once again the disease reminds me that is has managed to circumvent everything we've thrown at it. I wish I could say that I am optimistic that ANYTHING at this point will work but my gut tells me otherwise. Sometimes, you just know.  People tell me to just hang on, there will be a new drug or a cure, you're so strong. But, they have never lived with the kind of pain we have to endure or the relentless progression or aggression of advanced lung disease. The loss of self confidence and dignity that comes with reliance (or dependence) on those closest to us for help with the basics of day to day living. And then there is the fear and the 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 afraid of dying. Dying tends to be messy and involves a lot of pain. 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. I still want to live. Lately, it hasn't been easy, not by a long shot. But, I am still hanging in there, so to speak. What frustrates the hell out of me is not being able to do the things I really want to do with my children and my husband. I have to keep lowering my expectations and settling for less. Like I said, not easy.

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. So, I'll try to keep fighting as hard as I can and see what happens. I will hope that the pain continues to subside and I can get back some of my lost confidence. I'll try and live.

1. I am alive.

2. I am loved.

3. I am alive.

4. I am loved.

5. I am alive.

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