Comics

So I have noticed when the paper comes, especially the weekend paper with the color comics I don't read them anymore.  It used to be the first thing I would read in the morning, it seemed a good way to start the day. When did this happen, I am not sure. I think it has happened since CML has taken over my life.

First off I do have to say I am doing very well, my medication is working great. However having a "chronic" cancer is for me hard. Yes I don't look like I have cancer, but then neither do most of the people I see at the cancer center when I go there. I can do all most everything I want to do and usually when I want to. But somewhere in the back of my head there is always that little voice, the one only I can hear. It tells me you still have cancer, you still are sick, you still can die from this, you still have to take medication for the rest of your life. I tend to shut out things I don't want to hear, I just figure if I ignore it then it will go away. For some reason I can't shut this one thought down. There are days when I want to talk to someone, but I can't.  I don't feel I should burden anyone else with my fears and concerns after all I don't look sick. Unless you are in the same boat as me you don't know what it is like to have CML. Yes you can read about it, get all the info you want but you just don't know what it is like to live it. Most days I do fine for some reason every now and then it all hits me and I don't like what I know about CML. I don't like what it does to me, I don't like what it does to the people I know, I don't like not knowing.  Someday I want to be able to say "I had cancer and I don't anymore" for me that day will never come.

Don't laugh but I just remembered why I am in one of those moods... The other day I was getting some PT done for a stiff neck that has been bothering me for a while. The therapist, someone I hadn't had, asked me about the exercises I was doing and if I felt any better, so I mentioned the pain in my legs and arms that is a lovely side effect from the Tasigna I take. She asked "is it terminal". I didn't know what to say, it brought me back to a post I have read of another CML patient when a friend was "surprised" she was still around. It is weird what will trigger my mind to go places it shouldn't go. However I did reply to the therapist with "as long as my medicine keeps working then I keep working" I think that just about sums it up.

 I want to read the comics again!

Birthdays

Well it is a week before my 53 birthday, 5 1/2 years go I really didn't expect to be here. November 1st, 2005 my wife and I had just been told I have CML. From that day on my life has changed in so many ways it is to hard to explain. This year when my birthday comes around I will be older then my mother was when she died of brain cancer in 1983. I know medicine has changed a lot in that time but some things haven't, it still sucks when you have cancer no matter what kind it is. I sits in the back of your mind and just nags at you, reminding you, hey stupid you have cancer.

Most days I have learned how to muzzle these thoughts, once in a while they creep in and seem harder to get rid of then others. Today, actually this week my mother has been on my mind, when she died I was around 26-27 years old and I honestly thought she was old. I now realize just how young she was. How much of her life she was never able to live. She never saw any of her grandchildren, she didn't get to see how great of a teacher my daughter Jessica has become and how much at times she reminds me of my Mom. She was an incredible woman and I still to this day miss being able to talk to her and sharing what our family is doing. My Dad passed away just a couple of years ago and he got to see his grandchildren and until the last year or so enjoy what they where doing and what his children where doing in their life's.

I still have so much I want to do and see in my life and my family's life, so when I think about cancer sometimes I get in a slump, sometimes I don't enjoy life as much as I should, sometimes it is hard having cancer.... having cancer is hard all the time. It affects everyone differently and every story has a tale to tell. Sometime I have to work at being well, taking my meds. when I need to, but it is worth it and so am I.

To make a long story short my birthday this year will be a little depressing but it also will be a little joyful as I know there are so many things I am going to still be able to do. I will enjoy the day for what it is worth. But if I go off by myself for a while, leave me alone and everything will be fine in just a short time.

Thanks for stopping bye,

Chuck

A good sign.

My 25 year old daughter is engaged. Her and her fiance where down in Florida for spring break and he purposed to her. I am very happy for the both of them. She lives in another state so I don't get to see her that much. I was able to meet the fiance this winter and he seems like a very nice young man.

When I was diagnosed my daughter was in college and I didn't even think I would see here graduate. She did and is in her second year teaching special ed, and deaf kids. Something she enjoys immensely. To be able to see how excited she is when she is teaching reminds me of my Mom when she was teaching. They both always refer to the students in their classroom as "their kids". I mention this as it has brought a ton of emotion that I thought I had hidden away a long time ago. I really didn't know what to expect when I was diagnosed with CML and wasn't able to even look into the future to make any plans or even to wish of things to come. It is strange how as time goes by and my medicine keeps doing what it is supposed to do, I can at least think about my future. For the longest time the future was something other people could look forward to, I couldn't. My future was so uncertain to me it was foolish to try and plan something or even think about what I might be doing sometime in the future.

Sleepless night

Well I woke up at 4AM last night and realized my legs where wet and hot. I wasn't sure if it was because one of the water bed tubes on my side sprung a leak or if I had night sweats. I figured out it was night sweats, which is very disturbing to me. I know every time I go to my oncologists office they ask if I have had night sweats and I always say nope. But now I will have to say "yes".

In my mind at 4AM all I could think of was "shit" my leukemia is coming back. I also had gone for my monthly blood draw on Friday which has now been spaced out to every two months. I didn't have the results so in my mind I knew the results where bad. Two months ago my counts where up for the first time, but my oncologist felt it was because of the prednisone I was on for a cough I couldn't shake. Well this afternoon I got my results and they are back where they should be. I am relieved, however I am still very concerned why the night sweats decided to show up at this time. At that time of night my mind races with thoughts of what is going to happen, when, how will I feel, what will I go through, etc.

In the past few weeks two people with CML who's blogs I follow have died from CML. Both where younger then me and in better shape when they where diagnosed. This bothers me more than I can tell. It is one of those things that sits in the back of your mind and eats away at you. It is always there, always lurking in my thoughts. A lot of people tell me I should not think about CML as much as I do, and I have cut back at what I read and what I keep up with. However, what bothers me is things that just show up out of the blue. It is hard to live a "normal" live when you don't feel "normal". I can't describe how it effects me but it does, knowing that my future is so uncertain keeps me up at night quite often. I know on the other side of the coin is that no one knows how or when something bad might happen to them. It is not that I live my life in fear, I just live my life more guarded them most people.

I try not to show all the time how I feel but people that know me, (Sherry) really know me can tell in my voice when I am in pain or by how I look when I feel like crap. I know there are much worse side effects that I could have, and I am thankful that I don't have most of them. Living with cancer is not easy, living with cancer and looking and acting relatively normal is not easy. I don't share my fear very often as I don't feel it is fair to burden the ones that love me. I often say I think to much, and this is one of those days.... Sorry for the rambling, sometimes it helps me to write it down even if I know no one is reading it.