How Do You Choose Your Person?
Imagine being 36 and being told you have breast cancer. It has already moved out of the breast and started spreading through your bones. When you are first diagnosed with any kind of disease, the first thing that happens is information overload. You’re alone, scared, and overwhelmed by all of the new information you’re being given because there is too much of everything coming at you at once.
It’s terminal but you haven’t been told this yet. It seems the only thing the doctors want to discuss with you at this point is what you want to happen with your end of life care.
Do you want to be resuscitated if you go into cardiac arrest? Do you want us to do CPR and chest compressions? Do you want us to defibrillate you and shock your heart? Do you want to be put on life support if it is needed? Do you want to be DNR and for us to just let you go so that you can pass away? What exactly do you want us to do? At this point, no one has told you exactly how bad the cancer is or what your prognosis is for survival. They don’t even tell you it was Stage IV in the beginning. They told you they were still trying to stage the cancer and you don’t really have any other information about your disease. All you know right now is pain. How do you make any of these decisions when you don’t even know you are dying?
It’s the end of January 2015 and I’ve finally been transferred to the Cross Cancer Institute to start my chemo treatment. The resident doctor shows up to my room the first night I’m there to check me over and prescribe my drugs for the evening. One of the first things he wants to talk about is my end of life care.
I’m high, alone, and scared because at this point I’m not really certain what is going on and it seems like yet again all the Dr wants to do is discuss what I want to happen right before I die.
All I can think is that this Dr thinks I’m going to die in my sleep and I’m not going to make it until morning. I’m so afraid to sleep because I fear that every time I close my eyes it will be the last time and there is so much stuff I’ve left undone or unsaid in my life.
I’ve learned through these experiences that some stuff needs to be dealt with immediately and others can be put off for a later date. It’s been 18 months since my diagnosis and the cancer has spread into my brain and my last bone scan is showing that the cancer in my bones may be starting to become active again. If this is the case, the cancer could start to spread to the other organs soon and I’ve got some major decisions to make about my Personal Directive and Living Will. I’ve had a chance to think about things and talk to my family doctor about the realities of my health and medical condition. I’ve been able to make informed decisions about what I think would be best if it all comes down to making these decisions. We were able to have a good honest discussion about what my current condition is and what are some of the possibilities I can expect at the end if I do go into cardiac arrest or need to think about life support. I made some decisions about my end of life care last year but to be honest I’ve been procrastinating making anymore of these decisions because they are so final.
I have for the most part accepted that I’m dying but completing these documents makes death a reality for me.
What are the first thoughts that go through your head after you’ve been told you are dying? It certainly isn’t how you are going to pick the person that may end up being the most important person in your life.
Just to clarify, I’m 37 years old, I’m single and I live alone with my lovely cat Aurora. I have no spouse that can make these decisions for me so I need to choose another family member to be my next of kin. It will be either my mother or my brother. I know it’s going to be a hard decision for me to pick one of them but it’s a very important decision and I need to choose wisely. I have to take my best interests into account as well as the best interests of the person I choose.
They have to be able to live with any decision that they make when it comes to the end of my life and that decision will ultimately result in my death.
My mother had to make end of life decisions with her sister in 2007 when her mother, my grandmother, was at the end of her life and died. I know to this day my mom struggles with the decision that they made and has a hard time forgiving herself. Her best friend and sister was diagnosed with liver cancer in 2013 and ended up dying on my birthday in December 2013. My father was diagnosed with Chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) in October of 2014. He has since been diagnosed with congestive heart failure.
I was diagnosed with my cancer a few months later in January 2015. My mom is still struggling with the grief for her sister and hasn’t had a chance to properly grieve her because she has had to be so involved in my treatment and care. She already has a lot going on in her life without potentially having to put this on her as well.
A parent isn’t supposed to outlive their children and I don’t know if she would be able to let me go and be able to live with her decision even knowing that it would be the best for me in the end and it is ultimately what I would have wanted.
My brother is the other person that I trust to make my end of life decisions. I trust that any decision he makes would be what we’ve discussed and what I want to happen. We can discuss and prepare as much as we can for what might happen at the end of my life but there is only so much a person can predict.
James is 39 and with him being the same age, I know that if he has to make a decision about something that we haven’t had a chance to discuss that he would be able to make an educated decision based on what he would want to happen to him and the quality of life he’d want right now. I know that he would be able to follow through with my end of life plans but like my mother I don’t want him to have to live the rest of his life knowing that he might have made the decision to let his little sister die.
I decided last year that he was the best choice and would be my next of kin but it was and continues to be a hard decision.
I struggle all the time knowing that if it does come down to it in the end, he’ll have to live with whatever happens and I truly don’t know if I want that but I really don’t have any other options because someone has to be there to support me and make decisions about my life if I’m not able to.
All said and done, I don’t know what the end of my life will be like. I could very well just pass away in my sleep and no decisions will have to be made by my family. I don’t know how bad I’ll be or what my state of mind will be.
I need to be realistic and take all things into consideration so that in the end the decisions about my death is a little easier on me and my family.
All I want my person to have to do is act on my wishes and hopefully it will ease the burden on them knowing that it was what I wanted in the end and this person will become the most important person in my life.
Originally published July 21st, 2015 here.
Cathy was 37 when she was diagnosed with metastatic cancer in 2015 just after completing her Master’s Degree. She is chronicling her journey on her blog Is My Cancer Affecting your Ears?