No Pity Party

A old friend of mine wrote me last week, telling me that he has a hard time feeling sorry for me seeing that I am doing so well. It was nice to hear from him, and his tongue-in-cheek comment got me thinking about the whole 'pity' issue. Why do people 'complain' about their problems, medical or otherwise? The word complain is a bit strong, I am referring to when people express their woes. I don't know the answer to this, I suppose its different for any person. I can tell you why I complain, and why I write this blog. Its not for pity.

The news of my diagnosis was devastating. I never cried so much. One major problem was the total lack of hope. I have a incurable terminal illness, but 'terminal' is not well defined. I began a quest to find other people with similar conditions. I wanted to know how people live with this condition. What was their life like, what issues do they face, do they have anything that resembles a normal life? I found a bunch, and one in particular was inspirational (thanks Liz). I started this blog to let friends and family know what is happening, but now I also write to inspire others. I write to help stop the tears in an others world.  There is hope in this text.

Back to the pity party. I do need some form of pity, particularly to the people closest to me. I try very hard to meet my responsibilities, and sometimes this is very difficult and I fall short. I need some understanding and acceptance when I fall short.

Second to last round of chemo starts tomorrow. It a funny thing, I start getting the side effects before I start the cycle. I am looking forward to the last cycle next month.

When it snows....GO SLEDDING!

Happiness is bleeding

OUCH - DO IT AGAIN!

That tramadol I have been taking is continuing to do a great job ridding me of headaches. I have much more energy, so much that I have starting doing projects around the house. Before tramadol, I was constantly exhausted and did not have the energy to work on my many hobbies. A few of my hobbies seem to make my hands bleed, as seen here. I was putting up a 4' florescent light fixture in the basement, it slipped and started to fall. My stupid left hand tried to catch it. The fixture won and the skin was ripped off my ring finger. This may look like it hurts, but is evidence I am getting back to my normal self.

I explored a local hospital to watch my condition after Chemo is done. This did not go well. It takes some stern language to get the person answering the phone to let me to talk to someone knowledgeable. Once I got to a nurse, and explain my condition and what I am looking for, I could hear crickets on the other end. This is a nurse in the neurosciences office. She did not know what IMRT was (the radiation therapy I had), and I had to spell the type of tumor I have to her. She asked me to get her a copy of the MRI's and doctor reports, and they would get back to me. That was a week ago. These hospitals that advertise on TV how great they are, how much they care, and how they save soo many lives are talking about 'popular' cancers. They cannot help people with rare conditions like mine. It looks like I will be staying at Rush University for now.