What's Fear?

My choice to stop treatment and stop going to the doctor is at the core of this blog and fundamental to my state of being as I undertake this final journey and try to make the most of my days. So, I feel compelled to periodically write and revisit this decision, particularly when others do not understand my choice to be put in hospice or when I run into others who wrestle with this kind of decision. Normally, these are very emotional discussions and, often, many of the individuals come across as conflicted and certainly stressed. It's an incredibly important area for all of us to understand, especially those whose life circumstances place them in the horrible position where they have to make such a hard decision.

When I first made the decision, I didn't feel like it was that difficult for me. I think that was because I had been living with going to doctors and hearing the same thing over and over again, "there's nothing we can do for you." I had researched the hell out of lung cancer and IPF and basically felt like I knew everything I needed to know. And, most importantly, I knew it was MY choice. I never once thought it was the doctor's choice and hadn't really thought about that possibility until I started reading articles about "nmar say die" doctors who will continue to present "choices" that are really not choices at all. Everything the doctors were doing for me, hospice is doing for me at home. Of course, this doesn't apply to everyone. At many stages of disease there are real choices of treatment with varying degrees of risk and potential benefits. But when you are at the point when your disease is incurable, the only real choice is to continue treatments or stop. Doctors will present treatments in very good faith that may have some benefit but that benefit may be very small. When presented as an option, many patients see the choice- to continue treatment or not- as a choice between continuing to give up or fight. I don't, but I think many do.

I have honestly spoken to a number of others in my situation and have found many who plan to continue trying anything that comes along with the hope- or maybe the belief- that it might help or that it even will help. There are even a few who refuse to admit that they are dying, perhaps because the thought is so terrifying. When I speak of my decision, I know there are those who believe that I am simply giving up. This is not the case at all. We all say that it is up to the individual and bear witness to our right to make that choice. But is there an unspoken judgement there? Or do I feel some sense of guilt of indecision deep, deep in my own troubled mind? Who knows? I don't pretend to, and I'm open-minded enough to consider that maybe I'm the one who has a problem with it.

Regardless, It is a very important decision and a real one. And clearly, it's not a decision you make and then move on. Whether it's through discussions in support groups, with your doctor, your own family or friends who have heard about something they think you should try, it can keep popping up from time to time and you have to deal with it. It's important for your caregiver, your palliative or hospice team and your doctors to know where you stand on this so they can interact with you accordingly. I've made up my mind to forgo further treatment and, while I may choose to revisit that decision from time to time, I am at peace with it and I don't need to be pushed into second-guessing myself. I'm thankful for their concern, but it's my choice and it's the right one for me. Please honor that as you would anyone else's choice to "keep on fighting".

There is little doubt that I have been a Type A person for most of my life. I always have to be doing something and I am driven by perfectionism. But since I developed cancer, especially since it metastasized, I have steadily lost capabilities such that I now classify myself as Type Z. The Z is for Zombie. Zombies are pretty popular and they provide a good model for describing how I feel these days (Kevin tells me I don't look like a Zombie, but I'm referring to how I feel). For I have lost so much and am on track to lose so much more. Too much. At times, just thinking about it drags me into a deep depression. These are the times I really feel sorry for myself. It's when I cry.

But to be fair, I still have a lot to be thankful for and I don't want to minimize that. Yes, maybe I'm whining, but I'm being honest about it because, after all, that is what this blog is all about. I have to be open and honest with you. You need to know what I feel..... what others in my situation feel.

I spent the night in tears, feeling sorry for myself, feeling guilty for things I had done in the past, things I should have done, and that which I was doing to my family. I know it's not my fault that I got cancer, but I still feel guilty because it's me that is changing everything. My life is ending and Kevin's will never be the same. My children are losing a mother, a future grandmother. And I am going to miss so much. It tears me up inside sometimes. All of it.

You might think that I fear only my own death, but I fear the death of my life with Kevin and with my children. I fear the challenges and changes that my death will bring to them all. But then, in my tears, I realize how much I will miss them and how much I will miss of life. All the things that I might have experienced. All the wonderful things that I will miss seeing. All the great new products that Steve Jobs left in play before he died. All the things I might have done. It can seem bleak, hollow, sad. And that's when I know what it really means to die. And that's what I fear.

So you see what it's like to be me. A week in my shoes that ranges from the highest of the high to the lowest of the low. It ain't pretty, but it's all I've got. And I will do my best to enjoy each day to the fullest. Each day with all it's ups and downs. I will laugh and I will cry and eventually I will die. As will we all. I just know mine is coming too fast and I am afraid.

No one should feel like a victim and no one should feel, or be made to feel, like they are giving up. I've said this many times - you should have no regrets. This applies particularly when you choose a good death over a 'never say die' medical lottery.

A light in the darkness!!!!!!!!! Recently, Kevin and I connected with Heart to Heart Hospice, which has been like a breath of fresh air to us. In addition to the support of our family and friends, we now have the support of a wonderful team of volunteers and professionals and the occasional companionship of others who are going through what we are going through. Does that move me back up the alphabet? Mmmmmmmmm.....nah. But it sure helps to concentrate on the good things in life; to realize that, in spite of what's happening, life is good!

And I can still write!

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

Shanna xoxoxo

Here is the link to our Go Fund Me Page to help with medical and travel expenses: gofund.me/hope4shanna2016

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

 

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