Death and the Golden Retriever

Unfair...pain....cancer....terrified.....it's the monster in the closet, please slam the damn door! How does he keep finding me? Why does he continue to torment my three precious children? What's that you said, Stage III? Spread to my lymph nodes? Biopsy is positive? No more surgeries. No more. We are treating with aggressive chemo and radiation with possible immunotherapy. Before we leave...let's set-up a PET just to make sure there is no more cancer anywhere else considering your pancreas lit up on the cat scan as well.

FUCK THIS! How many more times am I supposed to hear bad news? I pick myself up just to get thrown back down again! And, this is killing my family. KILLING THEM! HOW DARE THEY GET BELITTLED FOR BEING HERE FOR ME THROUGH IT ALL? If all of you would please get a life and stay out of mine for even a minute, my family would so graciously appreciate it. Nobody would ever ever wish these illnesses on ANYONE! 

I close my eyes sometimes, and I dream that I am laying on a bed of sand hand in hand with my husband and kids. Then, I envision us running into the waves and back on shore. I see us collecting shells...and just listening to the water for hours.Then, we hop on an airplane, I make sure my kids are seated in the front row, and I ever so graciously stand on the field at Fenway and prepare for my moment. The moment I once had the chance to do with the NCTC Singers when I was 19....sing The National Anthem. We watch them play and Big Papi is there, just for that one game, and he hugs me so tightly then signs all of our baseballs. Then, I am back on a plane and we are sitting at Wrigley Field....and Kris Bryant, Anthony Rizzo, and John Lester all come up to me with tears in their eyes each hugging me. My kids and my husband have never been happier. I will make this bucket list a reality someday. 

There is some truth to the old saying, “There are only two things you can count on in life: death and taxes.” Everyone experiences death. Death and dying are an inevitable part of human life.

Some people know ahead of time when their death will occur. Terminal illnesses, when diagnosed ahead of time, allow a person to set his or her affairs in order, make relationships right, and say goodbye to loved ones. In these cases, every person involved has a chance to gradually adjust and make peace with death, as much as possible. However, not everyone has this chance. Many deaths occur suddenly. Death can, and often does, strike without warning.

No-one is promised tomorrow. The only one thing we can count on is today.

Life is a precious gift we are unable to recreate once it’s gone. The truth about death lays plain the harshness of the grave … but also the true beauty of the life we already have.

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 then can be reasonably included in one conversation. And I never really know how much information is too much. I don’t want to be a bore or a killjoy so, over the years, I have tended to keep a great deal to myself. I now find that I just cannot contain everything that I am feeling, and the only way to manage this kind of emotional storm is to get it down on paper.

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 rapidily 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. I teach them how to cook: “put a lid on the pot it will boil faster,” “don’t salt the beans they will never soften,” “nearly every baked good needs salt even if the recipe doesn’t call for it,” and on and on. One night, after Kevin made a particularly funny joke at the table, I asked Kaitlyn, “Do you know why I married your dad?” She shook her head from side to side. “Because he made me laugh,” I replied then added, “And he was a good man. I knew I he would never hurt me. Katie, looks fade, but true goodness and a well-developed sense of humor never go away.” There is no way for her then ten-year old brain to grasp what I am saying to her. I just hope the words stay with her until the time that she can understand them.

Our lives have a running narrative of lessons; I hope they are listening. There are so many things that I want to teach them. So many things left to do before they are ready for me to go, before I am ready to go.

But, who am I kidding? They will never be ready and neither will I.

I just turned 37 -- almost middle-aged -- and, yet, I call my mother when I am sick. I crave her embrace when I am feeling my worst or the world has been unkind. Kevin tries 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 go? Will I ever feel like I have done my job and that I will not leave my children unanchored 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 that 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.

I have spent much of the last 10 years of my life thinking about dying. I have done much of this privately though I have certainly had moments in which my internal struggle boiled over into interactions with others. Until recently, my thoughts about my own death have been largely unspoken or shared only with Kevin. And now I feel as though I need to come clean and tell everyone the truth. Dying sucks. Sure, I have been given insight into 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 not just the, “Geez, I’m going to be robbed of a good 40 years of living” but all the small losses that the dying process brings. It’s the inability to open a jar that derails a lunch that I looked forward to all morning. It’s the inability to lift my voice in song at church as I have done since I was an 8-year old child in the choir. 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 his gray hair has turned white.

Why tell you all this? Misery loves company? I don’t think that is it although I feel less alone when I tell my friends how I am feeling. What I really want to say to all of you is go outside and run. Feel the wind in your hair and the cool air on your cheeks. Run until you feel tired and then be grateful your body lets you do that. Sing at the top if your lungs (even if you sing as badly as Kevin does), dance in your bedroom, take the trip that you are dying to take, do the things that make you happy, etc. Someday you may not be able to do the things that you love so make sure you do them now, while you can. Everything we all said in the days after 9/11, all the promises that we made – spoken or unspoken – need to be made good on. Enjoy the ride folks just in case we only get one go around.

Personally, reincarnation is looking better and better as long as I get a good gig next time. I’d like to put in an order to be a golden retriever at a reputable breeder in the United States. That way I can get adopted into a good home and eat, sleep and play (my three favorite things) all day. Of course, I’d have to shit outside, but I can accept that.

Love you all and truly mean it and God loves you too!

Me xoxoxo

https://www.gofundme.com/fighting-for-a-cure-to-live]

Rage, Grieving, a Time to Heal

Me, at a loss for words...imagine that? Me? I found out while I was in the hospital last week that the IPF has spread to my heart. That is the last step before death. Doctors can only speculate time, but according to my doctor, I don't have much time left. My blood pressure has become so low that I am on bed rest,  and my 37th birthday is on Saturday. 

Since I was diagnosed, I have seriously celebrated the month of June as my birthday month. This month, not so much. I have had nothing but bad news this entire month. I was told I did not have much longer to live, and now I am scrambling trying to raise enough money on gofundme so that the pressure can be lifted from my mother and husband to give me the cremation and memorial service. They certainly do not have the money to send me off. Then, even though I have been paying on my car every week, which had been in the shop and this was the agreement between the dealership and I, they refused our payment the other day and demanded five hundred dollars or they would put the car back on the lot. We, of course, did not have that kind of money, so we wound up losing our car. I am beyond pissed. If you are a Gainesville resident, steer clear of Marler Used Cars. They will use you for every penny you have and sale you vehicles that do not work!

I am angry. I am sad. I am grieving. But, I am not afraid to die.

What scares me the most is suffocating to death in front of my children. I do not want them to see me that way. Suffocation is a real possibility since IPF squeezes the life out of you. So, I am afraid to suffocate to death. If that is how it shall end, I pray it happens when I am sleeping. I could not imagine any of my family seeing me that way.

I never realized until recently how unusual it was for all my friends and family to rally around me and support me as much as they have since my diagnosis. Apparently, most cancer and IPF patients lose touch with at least one person that they were close to pre-cancer and IPF because that person simply didn’t know how to deal with the diagnosis and carry on the relationship. The opposite was true for me –when four of my closest friends that had practically no money asked what they could do for me. They would help me with the kids so that I could rest or help me clean house. Two of them even helped me teach the kids. Last year on my birthday, two of my good friends planned my party from start to finish with my husband. It was a celebration of life party and the them was the 80's since I was born in 1980. It was perfection!

It is incredible what a valuable support good friends can be.

People who have never had cancer or IPF simply lack the perspective to understand the day-to-day realities of living with the disease. If you haven’t experienced it, it just isn’t possible to fathom what patients go through. Even people who spend a lot of time around cancer patients, such as caretakers, don’t have a good idea of what it feels like to have the disease.

It can be frustrating to deal with people who lack perspective. People who think that you should be able to get back with them immediately when they phone or email you, not taking into account that you may be feeling too ill to be social. People who have preconceived notions about what you should be able to do, never having experienced how chemo and other cancer and IPF related medications devastate the body and mind. People who think that their personal situation is the most awful thing that could happen to anybody.

Everyone always asks me if I am alright. They always try to pretend to be a doctor and give me advice as to what I should do next. For example, "Try this tea, it will kill the cancer cells and make you breathe better." It isn't that I am not grateful for the advice, but here is the bottom line, it is not the cancer that is going to kill me. It is not the Wegner's Disease. Although, these are both terminal illnesses as well. It is the Idiopathic Pulmonary Fibrosis. T'sshe only cure, and there is no guarantee in this, is a lung transplant. Because my lungs have cancer and Wegners as well as COPD and Emphysema, I do not qualify for a lung transplant. Lucky me! 

Life is full of moments. Some are amazing, precious and unforgettable. Hang on to these as tight as you can. Spend more time with your kids. If they are asking you to sit on the floor and play, give them that. Listen to them when they talk. Go for long walks. Take in all the sights and sounds. Look at the beauty of nature. Stop to literally smell the roses. If someone is in need, help them. Love animals. If you can save even one from a kill shelter, then you have done an amazing job. We have adopted three dogs from a kill shelter, and I love spending time with all ;:of them (we have five dogs, five cats and our oldest cat just delivered five kittens, and a guinea pig). Yes, I run a zoo. Take in all of the beautiful moments that God has given to you before it is too late. Include breathing into that mix.

Life also has bad moments. Learning you are going to die, is one of them. Like I said earlier, I do not fear death, but I am afraid to leave my children, husband, mother, and dearest friends behind. I do not want for them to live the rest of their lives grieving for me. I love them all to the moon and back. I hope they truly understand that. 

The first part of this blog is titled "Rage". I am angry, no I am pissed that my life is being cut short! I have big dreams. I want to watch my children get married and have children of their own. I want to go to Fenway Park and have my chance to sing the "National Anthem" like I did in college. I want to go to Wrigley Field and watch the Cubbies play. I want my grandchildren to love to come to our house and stay the night and tell me I make the best food and cookies in the world. I want more time with my parents. I love spending time with my mom. I look forward to our days alone. I want more days to drink coffee with my husband in the mornings. I want to grow old with my husband and rock on a porch swing watching the sunset. I want more time to spend with my best friends. All I want is time! And yes, I am extraordinarily pissed off! 

Being angry is part of the grieving process. I am just trying to find a way to heal so I can offer all of you positive words and motivation. But, then I began to realize, life also has ugly parts. So, while I cannot always be positive, I know all of you have these same moments in your life at one point or another. You may not have a terminal illness, but, I bet you might know someone who does. Or, you just might be feeling down in general. I am struggling with depression and PTSD with anxiety. Life is hard for me on a daily basis, but I manage to push myself to wake up and spend time with my children and my husband, and yes of course, my zoo. If I can motivate myself to do this, so can you.

The moral of this story: Life can be hard. Life can be beautiful. Life can be terrifying. Life is what you make it. Just keep going no matter what. Get up every single day and thank God you are still alive and breathing, because nobody knows what tomorrow will bring.

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

Me xoxo

P.S. Please, if you can donate to my fund so that my family does not have to have the burden of giving me a memorial service, please do. Any amount helps in going towards our goal of $10,000. Please open the link and read the story and you will see what all I am raising money for.

gofundme.com/fighting-for-a-cure-to-live

The Pill in My Hand Like the Gun to the Head

Being told you have a terminal illness is something that will likely hit everyone differently. We all die. That's a fact. Fortunately, most people won't ever have to face the reality of being told they are going to die younger than they had ever imagined. That is utterly terrifying. It is a feeling one cannot ever escape. I never thought I would hear those words either, until two years ago. There are so many things in my life I never thought would happen-and they did, and I survived them, and life went on as usual. Now, this is something that is happening to me that ultimately-I won't survive. Life will, eventually, go on without me this time. Wow! Talk about a kick in the gut.


My first instinct was to ball up and hold everything inside, but that's not who I am! I am a writer-it's not what I do; it's who I am! That has been my tagline for most of my life. Writing is my therapy, and it won't matter if it is on the blog or not, I will continue to write about my experiences as I go through them. But, I also don't exist in a vacuum, and IPF along with Lung Cancer, the two potentially terminal illnesses I've been diagnosed with-particularly IPF as it is extraordinarily rare for someone my age to contract (and has a very short term life expectancy); I thought that by writing this blog and sharing my experiences, even if we are not experiencing the same things, it would help someone else going through something life-altering. I know as I have gone back over past blogs that I have written, that it has certainly helped me.


It is also my online journal or log of my health (which includes my depression and anxiety) and how it has changed over the months and years. I can get so bogged down with the day-to-day living stuff (being a mom, appointments constantly, taking care of a zoo, and being a wife), that sometimes I forget to look at what has been lost and what has been gained. This is my place to keep that all together for quick access for myself too.


So, that is what my blog is, my journal, my life, my feelings, my place to rant, my safe place, and I am sharing it all with you. Now, don't you all feel so lucky? (ha!)


Today, I was elected to be an ambassador for The American Cancer Society. This means I get to call elected officials and try to get new laws passed for the care of cancer patients, create new fundraising ideas for the Society, attend more than just my local Relay for Life and volunteer at them, and email patients in their time of need. I was on top of the moon! I also created an event for The Pulmonary Fibrosis Foundation called Hit the Ball and Touch Em All Walk to raise money for new research and development so maybe I will be able to stay alive longer. The event is scheduled for October 21st. I will post the link at the end of my blog. I created a new Gofundme link for the kids and I as well. The money I raise will go towards my healthcare that my insurance refuses to cover (specifically my pulmonary oncologist and my breathing medications) as well as leave enough money so that my children are taken care of after I am gone. I will also leave that link up at the end of the blog. I know I am not popular, rich or famous...and most people have not ever heard about me, but what the children and I are suffering through is very much real. We desperately need help to continue on with a somewhat normal life. If you cannot donate, I urge you all to take the link and share with all of your friends. There are even tiers that I created which include very personalized gifts from me. Please at least read the story and share.


In psychology, you'll learn that people 'tell' on themselves all of the time. Forensic psychologists learn to hear what people say and what they don't say and use that to develop a profile of a person. My title to this post, a somewhat provocative one, I suppose, tells the reader a story all by itself. See it's MY hand but it's THE head. I don't "own" the gun to MY head-cause it never will be. I couldn't bring myself to even type 'my'. But that's all beside the point. I'm digressing and it isn't at all what I wanted to even talk about.


What I did want to talk about is depression. Depression is the proverbial gun. The pill in my hand is one of the components of a treatment, but not a cure, for the gun-the pill is the safety lock on the gun. Just like a real safety lock, it can malfunction, and sometimes the gun still goes off, but more often than not, the pill (or in this instance the safety lock) works and the gun cannot do as much damage. Sure, you could turn it around and use the grip to beat the snot out of someone, and someone can stay depressed if they really want to, but that's really wearing an analogy and a metaphor way too much.

The whole point of this blog post, that again, if you knew me and you were a forensic psychologist, you’d see the subject that I was trying to avoid, was talking about MY depression. And it was almost as hard to type that as it was to type MY in front of head when pertaining to a gun to my head.



CLINICAL DEPRESSION

The word ‘depressed’ is really a misnomer. A person who suffers from clinical depression is NOT depressed, and yet people use that interchangeably. Depression is a disorder, ’caused by the body not producing or uptaking the right chemicals when a person’s mood chemically tries to change, the way most people’s bodies will. We all get ‘depressed’ or ‘sad’ sometimes. That’s normal. Everyone has it. For some people, that depressed feeling lasts for as long as the situation that caused the depressed feeling lasts. That could be a few hours for something minor or a few days for something more major… to a few months for something devastating. But beyond that, at some point, life goes on, and so do we. We might always have some residual sadness pertaining to the thing that gave us the depressed feelings, but eventually, we get stronger, and we grieve, and we begin to pick up the pieces and move on. It’s a process. Some people go through it faster than others. Along that journey, our bodies help us by releasing certain chemicals and neurotransmitters that help use to change our mood in the direction we need to be going. The more efficiently our bodies do this, the easier it is for us to move past that depressed feeling when we are ready to do so.

A couple of things have to happen for the depressed feeling to leave us: 1) we have to want to move out of feeling depressed (ie: we are ready to move past grief, we’re ready to let go, we’re ready to move on with our lives, etc.) and 2) our body has to release and reuptake the right chemicals properly to allow us to change that mood on a biological, chemical basis. If either of these two things fails, we will stay in a depressed feeling. When one of or both of these two things continues to fail consistently, we move from being in a depressed feeling to depression.


There is a difference between depression and being depressed.



DEPRESSION, BY ANY OTHER NAME…IS NOT A WEAKNESS

And once we’ve been feeling depressed for long enough, and depression kicks in, it goes from tears and sadness and feeling blue to numbness, and void and emptiness. Darkness. Pain. Suffering. Suffering often and usually way beyond any situational depression/depressed feeling.



I hate that the two are used by so many synonymously and I hate that mood and behavior disorders are somehow considered a weakness by so many people. You’d never tell an insulin-dependent diabetic that he was weak because his body doesn’t make insulin right. You’d never tell a person with cancer that they were weak because they can’t kill the cancer themselves and need chemotherapy. You’d never tell a heart patient not to take their medicine because they are weak.

But many people don’t think a thing about telling a person who has depression (not just someone who is depressed) that they are weak for not being able to change their mood. That they are weak for needing medication to help treat their clinical depression.

This is where the confusion begins for so many: When you have a depressed feeling, doing things you enjoy (like reading, walking, exercise, sex, watching a good movie, going out with friends, etc.) or doing something physically active (like exercise, playing basketball, taking a walk to the park, having great sex (you’ll see in this list a lot–it’s a great depressed mood killer with the right person!), or changing your environment (going out with people, leaving the house, moving to another room or taking a walk)…. these types of things can help lift a depressed mood. Doing this things regularly enough and consistently enough will absolutely help a ‘normal’ non-depression-suffering person to lift a depressed mood. But for someone who suffers from depression–the clinical depression–doing these things will not only NOT make the mood better, but it can indeed make the depression worse!


The strain of forcing social interaction on someone who is already compromised can worsen depression. Pity, sympathy and love from people when someone is feeling worthless and unlovable can make depression worse. Sex can lead to feelings of guilt or sometimes worse, not feeling anything at all–and that’s devastating. Exercise exhausts someone who is depressed and can physically exhaust the body, making it work even less efficiently.

Depression cannot be ‘fixed’ or cured by doing all these things. Sure, in the beginning of a depressive episode, one can indeed TRY these things. If it’s a mild episode, it’s possible (though certainly not always) that it could help kickstart the right chemicals. But most of the time, these things won’t help–and again, could make things worse.


And anyone who thinks that depression is a weakness has obviously never had depression. You have no idea, unless you’ve been there, how hard it is to just get up, every day, to just function, even if it’s at a minimal level, to feel anything, to DO anything, when you feel the way depression makes you feel. This is beyond mood. This is beyond emotions. Depressed people who still manage to ever make it out of bed and out of the house, ever, at all, are some of the strongest, bravest, toughest people I know. It is NOT easy to function when every neurotrasnmitter and chemical in your body is skewed… and no amount of puppies, ice cream and laughter is going to instantly start making your body work right. But you don’t get a cheering squad for fighting your depression. There’s no depression-awareness groups doing free makeovers and sending folks to help you clean your house or cheer you up or read to you… there’s no walk-a-thon for you. But depression kills. It’s debilitating. It can make you physically ill on top of the physical ailment of depression itself. At it’s most extreme, it can be devastating.


HELPING OTHERS TO UNDERSTAND


It’s hard to tell your family, “I love you. I know I love you. I need you to know I love you. It’s not you. YOU aren’t the problem. You’re not making me UNHAPPY. When I say I’m not happy, I am NOT saying that you make my UNHAPPY.”


That’s the hardest part for me sometimes… making sure people know that they aren’t responsible for my depression. They didn’t cause me to get IPF or Lung Cancer. Why would they be the cause of my depression? They’re not. I hope they know that, really know that, too.

WHAT DOES ANY OF THIS HAVE TO DO WITH ME?

Can't write...

That’s when you know something is wrong. When I can’t write.

I haven’t really been on Facebook much. Haven’t been on the board. Haven’t written on my blogs. Just sort of here. Not really doing anything that makes me who I am, makes me me.

But I sat here tonight, with that pill in my hand, asking myself if I should pull the trigger. When I said that, I meant that putting the pill in my mouth and taking it was likened to pulling the trigger. And then I realized, it’s no wonder I’m having a hard time making this decision when that’s the metaphor in my head–that pill is a gun that is going to shot me in the head. Why would anyone want to do that? I had to explore within myself why I felt that way.

The reality is, logically, NOT taking the pill is actually more likened to the loaded gun at my head–so why am I so against taking this pill without even realizing it? Logically, I’m all for taking it. Logically, I see all the reasons why I should.

What’s stopping me?

Shrug.

I popped it in my mouth and said, I’m ready to get better. I’m ready to be ME again.

And there is NO SHAME in that at all. And I will be talking about this more in the future, because I believe there is such a stigma to this ‘depression’ stuff that just doesn’t need to be there and more people could be getting help and being healthier and feeling better if we could all understand depression better. I honestly think it needs to start by giving it another name. Serotonin Deficiency or something. THAT is something people can understand. It’s a malfunction in the why the chemicals in the brain work. Hypopituitarism is a malfunction in the way chemicals in the brain work. Type I diabetes is a malfunction in the way chemicals in the pancreas work. Adrenal insufficiency is a malfunction in the way the chemicals in the adrenals work… chemicals, hormones, whatever. It’s all the same.

I know many of my friends suffer from depression. If I can act in any way as a role model for someone who is going through a rough patch while their brain is misbehaving, it will have been worth it to go through this to write these posts. Depression is a disorder, a real medical condition–it’s not your fault, it’s not your life, you’re not weak… there is help.

I have seen this darkness before, but oh, I have seen the light…. I seek the light.


Now, shine a light on your own darkness.

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

Me xoxo

Here is the link  to my new Gofundme Page....please go read and donate and share: https://www.gofundme.com/fighting-for-a-cure-to-live

Here is the link to the Pulmonary Fibrosis Event: https://www.facebook.com/events/422102261510479/

Here is the link to just donate directly if you cannot make it to the event: https://www.generosity.com/volunteer-fundraising/pulmonary-fibrosis-foundation

Here is the link to my blogging page on Facebook....please come give me a like: https://www.facebook.com/shannasjourneythroughlungcancer/

I Am the Storm

I've longed been intrigued by the scenes we all see on the television where people receive bad, life-altering news. Often I think, 'gee, I would be more upset than that.' And on September 22, 2015, I was. It has almost been two years since my diagnosis, and it still has not become any easier.

I have a difficult time keeping in touch unless you are an extremely close friend or family member. I tend to be very pragmatic. If I don't have information worth sharing, why call or write? And in turn, if my family or friends had information worth sharing, wouldn't they call or write? This doesn't mean that i do not like speaking to my friends otherwise, I'm simply sharing why my brain doesn't initiate communication more frequently. Believe it or not, self-confidence also plays a direct role in this.

Why would someone be interested in what I have to say? Subconscious thought of course. This is the precise reason that I am a great candidate for a blog. You may choose whether or not you want to invest your time in what I have to say or not. I'm not forcing myself on you,and I don't have to worry about you not being interested.

I hope this helps my friends understand that I'm not some sort of  'only-call-when-I-have-cancer-person'. I am a friend that loves you, but has trouble 'keeping in touch.'

I have no way of knowing whether I will live one year or ten or more. Neither do you, of course; but between the two of us, I bet I’m more acutely aware.

Everyone wants me to focus on living as long as possible. It’s an easy concept, sounds great, and quite frankly, somewhere along the way, our species got VERY preoccupied with the concept of time. But is that the right goal? I prefer to say that I want to live with a high quality-of-life. And yes, I would like as many of those years as possible.

In the past week, though, I’ve defined a happy medium between the optimists and myself, the eternal realist. I want to be around as long as my mom is. The thought of her losing me is much more upsetting than the thought of my own death. This isn’t to say that my other loved ones wouldn’t be devastated. Nor is it to discount their love for me and mine for them! But without me, the world will eventually move on for everyone else, except my mom. (Please understand that I’m only being practical, and I don’t mean to upset you or elicit any “my life would never be the same without you” remarks.)

The dynamics of interpersonal relationships have fascinated me since my early teenage years. I’ve read both classic and modern authors, focused on the individual versus group behaviors, and ventured professionally into the study of organizational dynamics. While our species doesn’t enthrall me, the way we behave certainly does. Specifically, I enjoy seeing the emotional and intellectual ecosystems we weave for ourselves each day merely by interacting with each other.

For all that I’ve studied though, nothing compares with the wonderful relationship I have with my mom. I choose her title carefully for each audience:

Mother: I never use this word for her. Somewhere along the way (yes, I know where) the word gained a negative tone when used as a person’s title.

Mom: This is my go-to term for general purposes. It says, ‘yes, I’m an adult and no, I won’t take my own spawning too seriously.’ This is also what I yell if I need to get her attention. But it’s not her primary name.

Mommy/Momma: An affectionate term used when speaking of her to my best friends, but rarely to her directly. The use of it with them, however, is quite significant – as you will see.

I will write more later today. It is late and my tablet is about to die. Just remember, if I can remain positive knowing that my life is going to be cut short, anybody can. This is called faith my friends. Love you all and God loves you too!

Love always,

Me xoxo

I hate lung cancer

My hospice team spoke with my oncologist, Dr. Orr today about all the symptoms I have been having snd the fact that that I am still not eating, He is concerned that my cancer has come back.In Baylor they did a head and back CT and found several lytic lesions on my spine that could in fact be metastatic. So, in March he will do another Pet Scan and a CT along with a bone scan.

As more time passes I fear I've become a very complex person with many different sides and I don't really know how to make any sense of who I am anymore. Writing about it seems like a good place to start and will give me something to look back on in the future. I seem to flit around like a butterfly, once I've settled on some sort of equilibrium along comes a gust of wind causing me to fly off on a tangent! I can remain unsettled for days and sometimes I am so lost with conflicting thoughts and feelings its hard to do normal day to day things.

I have this very positive upbeat side where I laugh and joke about many things including my illness, I've always had a naughty side and that hasn't changed. There is nothing better then laughing out loud and seeing the funny side of things at the most inappropriate times. I love a comedy that illustrates the funny side of normal life as well as the stupidity and slapstick of TV shows dreamt up by the likes of Keith Lemon. In fact it was one of Keith Lemon's shows that had me in tears of laughter for the first time since my diagnosis when watching TV at home between chemo cycles! My husband was so happy to see me laugh again, it had literally been weeks since I'd so much as smiled. 

I find myself switching between these personalities several times a day so it's no wonder I am emotionally exhausted most of the time. I have become very good at hiding behind my smile, at keep my tears at bay, at acting...I deserve an OSCAR so please don't hesitate with the nominations!

It can be very hard at times knowing which one is the real me...I'm not sure anymore, maybe I am all of them and maybe that is ok. I guess only time will tell. Am I the vulnerable, anxious shell of a person or the warrior who won't be brought down by anything? Am I the person grateful to be alive, totally in love with life and living it a breakneck speed or am I the angry, shell of a person, confused, struggling with fatigue and fighting to get back in control? I HAVE NO IDEA...

As many cancer fighters, survivors and people fighting other life threatening illnesses will know some comments, phrases or misguided efforts at making you feel better actually have the opposite effect. Some now aren't really applicable anymore, this is yet another 'after effect' of cancer...finding phrases and sayings either really resonate, make you want to scream or laugh at the irony.



One of these comments is the popular 'any of us could get hit by a bus tomorrow' ... While I really appreciate that this is meant in the most supportive and compassionate way it actually doesn't help and often leaves me feeling more alone. Before I wrote this I did speak to my fellow cancer friends about it to get a feel for whether or not I was being oversensitive. You see its actually not applicable to us now as we have been hit by that proverbial bus! There are other comments that are also unhelpful but I will write about them in a different post.


Someone used this phrase the other day and as I watched her walk away all I can think was...'don't you see I have been hit by that bus...don't you get it...it's alright for you because you are walking around thinking it will never happen to you...like I used to too. You have no idea that what you just said makes me want to scream 'It's not applicable to me anymore...can't you see I have been hit!'


Also this 'bus' is likely to come and hit me again...how many times have you heard of someone being hit by a bus twice? I live in fear of being hit again and am constantly looking over my shoulder waiting for its impact.

When offering words of comfort to someone whose been diagnosed by cancer perhaps think carefully before saying 'Of course any of us could be hit by a bus at any time.' Don't try to generalise it, to make it sound like it doesn't matter, it was inevitable anyway and that being so makes it ok that you've been hit by a life threatening, life changing disease.

So where did this phrase come from anyway?? Here's what I found out;

A generic rather than literal example of misfortune, verbal shorthand to indicate that none of us know our future, that a catastrophe is merely an involuntary act of fate. Casually used to refer to an unexpected death, illness, debilitating injury yet without making it seem grim.

According to Wikipedia it was first used in the novel 'The Secret Agent' by Joseph Conrad; "But just try to understand that it was a pure accident; as much as if he had been run over by a bus while crossing the street."

This term is also used a lot in business management meaning that there must always be a contingency plan in case someone in the team is taken ill, leaves, 

etc unexpectedly. And the definition from the newly popular Urban Dictionary is 'Used instead of the word Stupid' For example; 'OMG this mobile is so getting hit by a bus.' when said mobile isn't working properly.

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

Me xoxo

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We are selling shirts for my cause so don,t forget to buy you one!

Babies...be still my beating heart

I've worked a total of 57 hours this week not counting tomorrow which is when my week ends. By the time my week will have ended I will have worked 74 hours. My first client did not show up with her kid,and she did not pay me. So most of those hours I worked pro bono. I have learned my lesson though...clearly.

Tomorrow, I wake up early and watch two kids (one being a two month old baby) and then at 3:20 I will be watching 4 kids, one also being a 2 1/2 month old and one being a 4 year old. Her older two are nine and ten.My dogs will be spending the day outside all day tomorrow so they don't jump on the babies. It will definitely make me house smell better.

I really love owning my own business, especially one where kids are involved. It gives me meaning and purpose to my life. I have been a recluse every since I was diagnosed and I am active. 

So, my doctor, Dr. Orr, called today to let me know that I need a bone scan because the MRI of my brain and spine showed lictic bone lesions. I go back and see him in March so please say as many prayers as you can because that is basically bone cancer.

My brother and his wife will be here on the 11th. We are going to mom's to eat chicken spaghetti which I can't wait to eat. I can't wait to see my brother either. I just wish he would talk more.

Ever since I was a little girl, I knew that I would grow up to be something special.  I didn’t know what, exactly – maybe famous, maybe a singer or an actress – but I never imagined that I would be special because of cancer.

But having a record-breaking cancer has become my specialty.   When I was diagnosed with terminal Stage IV lung cancer in September of 2015, and idiopathic pulmonary fibrosis. There is a 0.00001% chance that a person my age will get IPF. But here I am.

Taking one step at a time, day by day against this cancer, and forging on into the unknown against this disease in order to help others is what makes me special.  Here is my story, for whomever it may help.

Love you all and God loves you too,

Shanna xoxoxoxo 

Toddlers and Nap Time

  I have not been keeping up with my blog like I should be and to my readers, I sincerely apologize. I have been busy babysitting and teaching,,,which has definitely helped my depression. The little boy I have been watching tells me he loves me snd he gives me lots of hugs and kisses.


I've lost over 50 pounds in six months. I don't eat. There are days when I am too weak to walk from my bedroom to the living room, but now that I am babysitting, I force that weakness to go away and I truly live, He does wear me out, but that's because he is 4.I'm not used to a toddler around lol, 

1. I do have bad days. Some days I feel slightly weaker than others. But right now I'm feeling all right. My mood is good; once I start functioning on an intellectual level again, I feel like there's a reason to go on existing, but when I feel as awful as I did last week, I really long for the promised coma in which I will feel no pain. I don't see any point in living just to feel pain and suffering--that's where I draw my "quality of life" line, although I know
   different people will draw theirs at different points. In some religions, I know, pain and suffering have value and meaning in themselves (one of many reasons why I don't have much interest in religion). But now I still see things I can do both in support of hospice/end of life issues, as well as in the psychiatric survivor movement. And to me, work gives meaning to life.

Love you all and God loves you too,

Shanna xoxo

Back on Hospice

Hospice is designed to give supportive care to people that are in the final phases of a terminal illness. Well, hello Hospice, we meet again, except this time, I actually like this company and the nurses. They are they to focus on comfort and quality of life "rather than cure". Actual rules are that several doctors agree that you are in the final six months before you are even allowed to enter hospice care. 

So, alas it looks like I am dying still...so that's what I'm doing....patiently and kind of happily dying.

Letting go.

I am so terrified of falling off the tightrope.

But aren't we all on some sort of tightrope?How do we control it?

I’ve started multiple blog posts since the last one, but I can never seem to get into the desire to write them. I feel like all I’m doing is complaining these days, but there isn’t a lot of really positive stuff I CAN share when living with a terminal illness. I want you to see me as this strong person that you all tell me I am, but at the same time, I need you to understand that there’s no strength in me when I feel like this. The only thing that gets me up and out of bed every day is my birds and my family, because I’ve somehow conI take vinced myself they both need me, even though I know that’s not true. They both would do fine without me–diminished, perhaps, for a time, but you move on.

That’s not to say that I’m ready to die. I still want to fight this and keep living and writing and loving and caring and sharing… but it gets harder and harder. And the longer I go without a cure or a surgical intervention, the less likely it is that I”m going to survive another 10, 20 or plus years. I’ll be lucky to make it five more–if even–and if the way I feel matched the way things go down, I’d be dropping dead next week.
I take Gabapentin for nerve pain, but it’s nerve pain I might not have if the fluid were able to be removed from my body. Although I do have acute adult scoliosis–so who knows what’s causing what? My doctors don’t really care, because my severe conditions are more important to them than my back pain, even though my back pain seems to cause more quality of life issues for me than anything else. They do nothing but throw pain pills and nerve pills and muscle relaxers at my back.

Well… Pain pills that make me sick to my stomach and unable to function for a time, but without them, I’m unable to do anything but lie in bed and writhe in pain. And I;m not being hyperbolic there. I lie in bed and writhe in pain until it kicks in, the pain is so bad. I will tremble and be unable to speak until I feel it wash over me sort of like a water wave released from my brain that rolls down my body, then back up, and then slowly I realize the pain is subsiding. 

And then when I take pain pills, I am accused of being a dope head. My pain is real but they don't know that because they aren't around me enough to see me hurt.

Being sick is not fun and it is certainly not pretty.

This is the truth. This is the truth of being sick every day. In laments terms; it really sucks. I can be upbeat and happy most of the time but I also have to admit when I am angry, sad, lost, feeling hideous, and hurting.

I love you all so much and God loves you too,

Shanna xoxoxo

Also, we have started the fundraising campaign again. The link to donate is gofundme.com/hope4shanna2016.

Between Heaven and Earth

My kidneys have taken a turn for the worse.  I have had trouble with them since I was a little girl. But, now, I sit in a hospital room praying for pee while waiting for dialysis. It is just one more thing to add to my already long list of medical problems. My Wegner's Disease is active again which is why my kidneys are failing. Not even the chemo is helping.

I keep hearing, "There's nothing more we can do. You really need to be on Hospice." 

These words leave no room for hope; they make a transition to comfort care a much feared and often avoided final destination.

Yet, here's the reality: More can always be done. More importantly, patients know exactly the "more" they want. The real question is, why don't we ask?

I know a lot of you do not know me, but let me just say that I do believe in miracles. I do believe I am in the hands of God. Maybe it is time to sit down with all of my doctors and have a come to Jesus meeting, as we say in the South. 

For me, I live between two worlds, one foot on earth and one foot on heaven. I don't sweat the small stuff anymore. I am freed by a lot of things that you, the reader, are not. I no longer try to envision what living in a nursing home would be like. The stock market has no effect on me. I no longer wonder when I can retire. I no longer wonder what I will look like at 70 or 80. I tell people I love them freely. I eat ice cream whenever I want.

I am much more focused on my movement toward as time slips by and I am very cognizant of every day, of everything. I experience things so acutely now. The leaves turning this fall have never been more beautiful. Every time my children wrap their arms around me and tell me they love me, I am overwhelmed with love for them. I am overwhelmed with love for others...for all of you who reach out to me, and then my overwhelming love for God. I am not sure how much time I have left, and yes, I do feel like I am living in two worlds. I am at peace with that.

We are all mist. Knowing that I cannot do everything anymore, releases the stress allowing me to at least be able to do some things.

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

Shanna xoxoxo

Also, we have started the fundraising campaign again because aggressive radiation is not cheap nor are our travel expenses. The link to donate is gofundme.com/hope4shanna2016.

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

 

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna

Brain Fog

We cannot afford to beat ourselves up for woulda', shoulda', coulda' moments. The past is the past. It's  different than now. Everything that happened is no one's fault, especially your own. But we can make changes based on what happened before so that it becomes better in the future. 

I let my daughter listen to a song today by Martina McBride called "I'm Going to Love You Through It". She just burst out in tears. The song is about a woman who gets cancer (breast cancer) and is 38, married, with three kids, This song basically encapsulates every emotion I feel on a daily basis. Thank God I have someone to love me through it every step of the way. Actually, as a matter of fact, I have four people who are going to love me through it,

Today was Vetersan's Day. And yes, though you definitely should thank a vet, I kinda despise this day when I know I shouldn't. I lost my best friend, my confidant, the one man who I knew would tell me "I will go to the end of the earth and back for you...and actually mean it; My smart, amazing, class-act, hero, and one of a kind father....my cousin Michael Dean Dahl. Today, I just can't put my thoughts together. Today, I also found out (12 years ago), that I was having a boy. They never got to meet and I think Tristan has so many of his amazing qualities. 

Nonetheless; Happy Veteran's Day to all that served our great country. You made this country beautiful. I am sorry that so many people are ruining that by sending messages of hate and dishonor. My family is safe because of all that you have done, and I am truly grateful for that,

Maybe Vets and cancer patients are alike. Here is the irony from that comment: If cancer patients were participating in warfare, we would be decorated in our valor, celebrated, and maybe even highly compensenated. And we can't even get our parking comped.

And yet, here I am. Alive! It is a wonderous thing, and something most people take for granted.

I would do almost anything to survive. There was that one part in the middle where I almost gave up. And sometimes, even now, I sometimes want to give up.

I was admitted into the hospital yesterday for shortness of breath after radiation. Then I began having seizures. They counted 110, to be exact. My mets are still growing, which are causing the seizures. My story cannot be finished here. But sometimes it feels that way.

One of my biggest fears is going to MRI's every six months. I have now had almost fifteen and I still cannot get used to the loud, feeling trapped, clankiness of the machine. I get Cat Scans on my brain every two weeks and so far there has been no good news come of it.

My brain METS and the chemotherapy has made me forget quite a bit. I do go through angry outbursts as well as emotional ones. I really don't know who I am anymore.So to all of those I forgot to wish a happy birthday to this year, I apologize sincercely for not recognizing your big day.

God, my husband is really going to have to watch me. I may end up catching a plane to no-where and then he would have to come find me. Good thing i am broke!

So even if I miss the boat entirely, I know i'll still get there. I just wont remember how,

November is Lung Cancer Awareness Month, wear pearl or change your profile picture to show your support for those of us lost to this disease and those still struggling with this disease.

Also, we have started the fundraising campaign again because aggressive radiation is not cheap nor is our travel expenses. The link to donate is gofundme.com/hope4shanna2016.

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

Shanna xoxo

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

 

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna

Happy Fifteenth Wedding Anniversary to Me!

Its been a while since I have wrote. So much has happened since my last blog. I have been on chemo and extremely sick. Tomorrow I start advanced radiation, but tonight I am enjoying my fifteenth anniversary with my husband in a hotel room that was gifted to us by a really good friend.

I have had a hard time dealing with my cancer and feel like I am living life on a Merry-Go-Round, but I know I have to keep fighting for my family. My mom is so confused by all of this, it is about to drive her insane, and I wish I could explain it to her in a way where she would understand, Her fear that I am not getting the correct treatment is getting the best of her.

After cancer hits you, you cope and move on. But I think the most important part is how you cope. Many people are familiar with Scott Hamilton, the Olympic medal winning figure skater. But I am not sure that everyone knows about his cancer diagnoses. In addition to testicular cancer in 1989, he has also been diagnoses with brain tumors, several times. And he has also developed that awesome resource ChemoCare which provides a huge amount of information on chemotherapy regimens, including the all time favorite, side effects. His last diagnosis was last spring.

He spoke about this recently with People Magazine, that ever popular medical reference. I found the video very interesting and provided some thought provoking insights. Watch it all the way to the end (its less than 3 minutes), and then think for a bit.

A cancer diagnosis is a big fall in your life. Actually its not a fall, its more like it threw you down three flights of stairs. But you have to regroup and go on with your life. You still need to go to the grocery store, have surgery, drive your children to school, do the laundry, deal with surgical drains, mop the kitchen floor, dust the living room, make the beds, hang out with friends, and go to more damn doctor appointments that you ever thought possible. And deal with this huge emotional wave of medical crap.

Its not what happens when you fall, its how you handle it.

I can go weeks, even a few months, and feel that I am doing okay and I am in status quo of a semi-healthy state. Then I go over to the other side and think my body has let me down and I have some new ailment. Or an ailment has decided to act up again.

Its just unfair. Seriously.

But I digress. I felt well for about a week. By well, I mean sort of normal. Then we came home and my back started killing me. And my knee hurts. And my neck hurts. Then I am sure next week at least for a few days, I will feel fine.

The hard part is the balancing. Every day I wake up optimistic and then I do something like try to move, or get up to head for the bathroom. Some days I can manage the basics without saying 'ooch, ouch' constantly. Some days, people start to look at me funny when I start talking to myself 'ooch, ouch, ooch, ouch, ooch, ouch....' You get it.

So some days its good. Some days its not. I never know. I can have big plans for the day and then my body says 'no you aren't going anywhere'. I can't count the number of times I have changed plans simply because I can't go anywhere.

Remember this time of year, though magical in so many ways, puts strain on even the healthiest of people. It can be overwhelming for cancer patients.

November is lung cancer awareness month. Wear pearl to support all of us struggling and all of those lost to this terrible disease.

Also, we have started the fundraising campaign again because aggressive radiation is not cheap nor is our travel expenses. The link to donate is gofundme.com/hope4shanna2016.

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

Shanna xoxo

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

 

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna