It started on November 6th with an early morning argument over whether or not he was going to the ER to get checked out because I was convinced he had pneumonia. Anyone who knows me knows things could not be that simple. The lady in the ER tells me that his heart is enlarged with fluid surrounding it, he is sent to the open heart unit becuase he is belived to need open heart surgery immediatly. I was devistated, this sucks, is he going to be ok? Well now I am wishing that he had needed open heart surgery.
The surgeon comes in and tells me that his heart is not infact enlarged, but he has a large mass (tumor) encasing his heart. Non hoskins lymphomia, the fastest growing kind and the tumor surrounding his heart is the size of a basketball. In my mind I just lost my husband, but I can't let that show right, nope I have to be strong for everyone else some who need me, some who want to tear me down, some who don't know what to do, but I have to be strong, put on my game face.
T Cell Lymphoblastic Lymphoma also refered to as leukemia lymphomia, how common is this, how treatable is this, are the kids and I going to have him, does he know how much I love him, what if he never walks out of this hospital, how do I tell the kids, did I do something to cause this, I mean I smoked for years around him, did I do this to the most important man in my life, how will I make ends meet, health insurance, can I afford it with out him working, I have to he needs it, he needs what treatment, that is called what again, the tumor is how big, wait it is in his blood, why, where did this come from, i need to sign what, why, a living will, ok I can do that, umm christmas, i don't know if daddy will be home while secretly I wonder if he will be alive. All of this mumbo jumbo going through my head at one time, not in spurts or as I think of it, but all at once over and over and over.
So doctor you say 5 % of cancer patients have this, it is rare, oh and the protocol is complicated, you don't do it often, and you have never seen a basketball size tumor in someones chest before. You are telling me that he is going to survivie, he is young and his organs are in good health, that is good. Secretly again, I am thinking this is rare and risky and we won't talk about the researched survial rate I have read over and over again as that is not relevant because he is going to beat this. We are going to win this battle, we are due a win and damnit I am taking this one even if I have to cheat!
Our lifestyle, our parenting, our love, our devotion, my mental health, my capability, my morality, my value, my ability to take care of MY family has been questioned, mocked, ran in to the ground and totally misjudged by people who are not fixtures in my life, in my childrens lives or in my husbands life, but by people who decided that now, when MY family is in crisis that they need or want to be involved, they suddenly care what happens to my children, my bills, my husband. The same people that a month ago couldn't make time know what is best for my family.
Do I blow up or cause a scene or call out the petty untrue falacies being told, do I get angry or act out in anger or stress. No, I suck it up and I try to do what is best for my husband and my kids, I never said anyone had to agree, just that it had to be respected after all I know my family, better than anyone does. I confide in what I though was a person who cared and it bit me in the ass and than I am criticized for deciding to keep my feelings to my self, for dealing on my own.
I would, if it was me, you have to, really well just let me say this, this is my husband laying here in this hospital scared and sick and fighting for his LIFE. I have built a life around him and he around I, we have had disagreements and fights and each have reacted and vented, but that is what happens in a marriage, that is what a strong marriage consists of, lows and highs, disagreements and make ups and ohh how we both love making up.
Every fight, every negative word I have said to him, every negative thing I have thought and not said, every single little time I was angry at him, yelled at him, even when he deserved it, that is all in my mind and it replays at night when he is sleeping and I wonder if he will wake up healthy or sick or at all. I wonder if he knows how much I love him, does he know that when I am having a bad day at work I can think of him and smile or laugh at something corny he did the night before? Does he know that laying down next to him at night and waking up next to him in the morning are the 2 highlights of my day. Does he know that I fell in love with him on our first date, I woke up next to him in his arms and wanted to get out of bed, it scared me to death the feeling I was having, I mean I just got a divorce, we have talked on the phone for a few months, but I just met you, I can't feel this way, this is nuts right!
Well it has been almost nine years since that night and we are still in love and he is still my best friend and I can still melt from a simple kiss or hug. Does he know this? Sure I tell him, but does he know how much i mean it, does he know I am not just saying it because he is sick.
The kids, they are good as long as they are allowed to be kids, as long as they don't have to worry or answer or think about all this. My daughter says to me, "mom I don't know what to do" I tell her that how about she let me worry about all the stuff and trust that I know what I am doing and all she has to do is be a kid and do as I ask and she says "that is a wonderful idea" and it works, i call and I ask do you miss me today, on this day, the one I am living now, she said no she was having fun. She don't understand a lot and she don't have to. She don't have to talk about this situation all the time, she does talk to me, but she don't have to relive the fear and the uncertainty every day. I have two priorites, the kids and my husband it is hard to have two priorities, it is hard to juggle and sometimes I just have to do what I feel is best and hope I am making the right decison, and make those decisions with my husband, we talk to our kids and to each other and try and do what we feel is right, after all we know us and our family better than anyone else.
Some days are good days for him, some are bad, some days are good days for me, some are bad, This is a bad one, this is one where I sit here and watch him sleep while the nurses come in contantly and pump him with drugs and I cry and pray alone, I pray, I pray, I pray.
This blog is for me, it is for my feelings, it is my best freind because my best friend can't be there for me on this one like I need him to be. I choose to share it because it may help someone I know or don't know, but most of all I hope it helps me, all the other out lets have either let me down or are taking care of other important things I need or I simply just can't turn to them. This may piss some people off, it may help some people, but either way it is true and real and I am entitled to that, I am allowed to have my life and feelings with out being ridiculed for them just as my husband is allowed all the same rights as a person, a person who is fighting.
The thing about love is that is had the most ability to hurt, nothing can hurt like love.
I will close in saying THIS IS MY LIFE, I don't have an escape, I don't get to go on with what ever I had planned and visit this life and call and hope and love, this is my life there is no other life to occupy me while I hope for the best, I am here for better or worse, richer or poorer, in sickness and in health and I will always be, even if and when I have to put my own feelings aside for the one I love.
