Blog # 65 "Live Your Life"

It's been a while... 

I went to do my pet scan on 12/11/2014 and of all things that stopped me... My glucose was sky high, at 272.  The doctors said "No way" on doing the scan on that day and sent me home. All I really could do was laugh about it. The anxiety of having it done and then being sent home was hurtful, I can not lie.  I didn't cry, there were no need for tears, there was not a single thing I could do about it.It hurt me and I put on that warrior face (I am required to have) and I rescheduled the test for 12/18/2014... Today! 

 I called my oncologist  office, as the technician suggested I do  and they had me come in on Friday last week as they wanted to check my glucose and see what they could do about getting a handle on it. I wonder if it had anything to do with me eating ice cream blizzards from Dairy Queen for about 7 days in a row. I had been having such issues with my stomach that I could not handle dairy products so I had not had any ice cream in 7 months since starting chemo. After the first one I had, I realized it no longer hurt my stomach and I might have gone a little overboard with my craving.  Besides the box of candy my friends sent me from our annual candy making day (that I had to miss from being so down from the chemo) I ate some of it the night before the pet scan. I had not even thought about my sugar being high at all. I had not had that issue at all since being sick so it never dawned on me not to eat it. 

The oncologist has me on a medicine to try and regulate my sugar and has me poking my finger three times a day to test it..which is a new world for me. I know a lot of people are diabetic and have to do it everyday, it's just not something I expected in my own life.  Someday's it's lower than others. I thought that I could still eat the way I wanted (minus the ice cream) and I find it raises my sugar.  

Here's where I guess it get's personal. Before 2/6/2014 I was what I felt like a healthy person. I didn't know this stupid monster was living inside of me invading my liver and doing it's best to suck the life out of this woman that does her best to do her best every day.  I suppose the whole fear inside me is that the cancer is likely not going to kill me..and seems lately I have been running into complications and makes me  wonder..like most people they don't die from the disease they often die from one of the side effects that the cancer creates. I try so hard to put that out of my mind. I fight my thoughts on that.  It's a whole lot harder than it appears to be. 

There are people that sometimes I want to just pick up and shake to make them see things through my eyes and unfortunately...that's not going to happen. I went back to the oncologist yesterday and my blood work was less than perfect. Another RED FLAG of concern for me. I took my print out to the hospital and dropped it off for Dr. Chamsuddin to take a peak at for me.  He called me and said I looked fine. Get some iron pills and he was mad at me about my weight. I wanted to scream. I wish I could make him me for a day. I wish that the people that are on the inside/outside of this disease could understand how it feels to walk in my shoes for a day. I would be happy to share myself with them for just an hour and I think the understanding would be a different story. You can not understand how it feels to be the SICK PERSON... Until you are the sick person. My weight is up. I am up to 137/138. Last week that is what I weighed at the doctor and I went back yesterday and it said 132. No way can I lose 5 pounds in a week ...every week. I eat. I do the best I can as I lay in bed completely wiped out from a poison that is put in through a needle into my veins that takes me from a state of feeling alive to a state of not even knowing I am actually alive. The chemo is the hardest thing about this process. I hate the chemo. I hate when I have to go and have it done . I hate when it takes over my body and my mind and it's almost as if it paralyzes me! I hate the high's and low's of this disease. I start feeling good after a treatment and then it's time to do another and I am completely knocked back down again. Seems the longer I do the treatments the worse I hate it and the worse I feel. I lay in bed for a minimum of three days and can't do anything much except  take a shower every day and do my best to eat and drink as much as I can. I try so hard... like I try at everything in my life. I am an over achiever. I am one of those people that will be at the top. I am aggressive and proud. I just feel that I have no control over this disease. I have no say so about how I am going to feel on any certain day and after traveling this road 10.5 months I am a little frustrated. 

Attached is the link to my video I made today about how I feel about my Pet Scan and it's results

https://www.youtube.com/watch?v=ce1nAJmZCOY

I am fighting this monster the only way I know how and that's as aggressive and strong as I can. I am suppose to be all of these things..Cheerful, strong, happy, aggressive, a warrior... and in the midst of what I am suppose to be this disease is beating me down at every turn. I hate cancer. I hate it with every single part of my being. I just want to be free of this. I wonder if I can ever mentally be free from this disease? I guess it's because even when I get to the "Remission" state of this there are going to be test every 3 months and if it comes back we will be fighting it hard from the onset. 

There are days that all I can do is cry. I try my BEST not to call my brother and sister on those days. I try not to cry to them. I know how much it hurts them when I am fearing something. I want control of this. I want to fix this ... I am a fixer... I can (I thought I could) fix anything. I am trying to be every thing I need to be for every single person and when things don't go right (just like in anything you do in life) I get so frustrated and mad. I scream sometimes. Sometimes I just want to find a stranger and curse them out for no reason or blame of their own. I bite my tongue as hard as it is .. I let things just be because sometimes it's just not worth the fight anymore. Life goes on with cancer, you still have all the same things about paying bills and living your life. It's tough at times. I am the independent person I have always been feeling so dependent on so many people. I reach out for comfort sometimes to people and I have literally been turned away. It's to hard for them to hear me cry to feel my pain. They would rather just pretend that I am no longer their friend because it makes it easier for them. I guess it would and then in turn it makes it harder for me. It's okay I see things differently now and I can take people for their face value. To bad I didn't know how they would have treated me all those years ago or I would have never been their friend in the first place. Losing friendships during this time is really hard for me too. I am disappointed by people. I am hurt and frustrated but I can not control other people. I think most people whether on the inside or the outside of my disease think I have all these people always around me and keeping me company. Most days that is so far from the truth. I have a special group of people that do love and support me day in and day out... Those are my heroes because it takes a hero to go through this disease with someone. I know that it's as heartbreaking for them to go through the day in and day out things of this disease with me. I just know that I could not make it through any of this without them. You can not understand how it feels for someone you love to have cancer until you have someone you love that has cancer. It's mentally exhausting.  It hurts me and I know it hurts the ones that love me to most just as much. 

The one other tough thing is.... still trying to be a loving, caring, nurturing mom through all of this. Trying to make a 6 year old understand why I can't get up and why I can't open my eyes to play with her is hard. She has the most inward view of this disease. She understands a lot more than I can even give her credit for. A 6 year understanding and dealing day in and day out of cancer is hard and completely and utterly unfair. Breaks my heart every time she has to face something new with me. Last week she had to learn all about pricking your finger and testing your glucose. It makes me sad. She should be playing baby dolls and being sheltered from this disease. I can't do that when I am her full time care taker. She wants to be with me. She comforts me more than she will ever know. She gives me the strength to keep this heartbreaking process going. The bond that we have is nothing short of amazing. I am loved by her... I am truly unconditionally loved by her. 

The other morning she was full of questions which gave me a great idea, we have decided to write a book together.  I thought I wanted to name it "Nobody will ever love you as much as your mama does" Then at the mall yesterday I found a shirt that say's "Live Your Life" (which I am wearing for my pet scan today) and I think that title totally suits the book much better. We will see. I have been asking her lots of questions on her feelings and I have had her draw pictures that almost take my breath away. I think sharing cancer through her eyes is something she will hold dear forever. I told her I want to donate 20% of profit to the  liver cancer group I am now a part of... The Georgia Liver Coalition , and the other part I want put away for her college tuition and her wedding. Maybe we will sell a lot of books and maybe we wont...but... whatever we make goes to a great cause and through that I feel a sense of happiness through the understanding of a disease with a little 6 year old leading the way. 

There are high's and low's of this disease. Today, I pray for a high. I pray to God that my Pet Scan shows no activity in any of the tumors. Today as I lay on that machine and have it scan my body for this horrible monster I pray this monster is defeated and gone from my life forever. There are days I fear every thing and others I fear nothing at all. I share this journey from my heart ... From the very being of my soul because I have to be open and honest with all of you because it makes me be open and honest with myself. 

There are things that I could go on and on about ... Things that I don't like that other people do or don't do. But honestly for once in my life this journey is about me. I am about me and I will forever be a changed person for going through all of this. I am in no way ever fighting with someone again. I am going to tell people my feelings and leave things where they lay. I don't need to have the last word or to try and make any one feel guilty about what they did or didn't do because at this point in my life you are either with me or you are without me. It's as simple as that.... It took getting cancer and going through all of this to realize the true simplicity of what that really means.