Waiting time

Ever since this started I feel like I am always waiting; waiting on a test, waiting on a doctor, waiting for results from test, or waiting to see the next doctor.  I still have another week before I go to my first radiation treatment. It’s hard not to worry about it. It’s all of the unknowns that start getting to you. I have tried to keep myself occupied. It helps keep your mind off things.

It’s been nice that my work has been working with me. I have been put on “light duty”, and we don’t really have any light duty where I work. Most of the time they just send you home, but my manager has been working with me to be able to stay and find things to do. I really didn’t want to go home. I know all I would do is spend time thinking about everything going on.  They are also going to get me on what is called “intermittent short term disability”. That way I will be able to leave every day to get my treatments and still get paid like I’m at work.

I’m not really sure about the medication the doctor has me on. I think it causing me to have some crazy dreams at night. The other night I was being chased by cows as I ran down a dirt road and when Christy got there she had hairy legs but the hair wasn’t all over her legs it was just on her shins. As for helping with the pain, I don’t feel like it’s doing much. It dulls the pain some but not much. I still end up not sleeping all night. I ended up on the living room floor the other night. It was the only place I could find that didn’t make my back hurt.

So I know this post really doesn’t have much information but it’s what’s been going on. I also want everyone to know you are welcome to comment and leave any questions you have.  

The Good, The Bad, and The Ugly

Just like everyone else, I thought this would never be me. It always happens to someone else. The waiting has really been the hardest thing this week; the not knowing if it’s cancer or not. It’s crazy what your mind can come up with. Thinking about this thing inside you, growing… you can’t stop. It’s there, and it’s almost like you can feel it getting bigger.

I got up this morning very nervous about today. It was the feeling of wanting to know but not really wanting to know; not wanting any of this to be real. When we got to the cancer center, I went in first for a chest x-ray. It was nothing really; took all of about 30 seconds. Then it was up to see Dr. Nicholas. It is really amazing how nice everyone is there. We didn’t have to wait very long before the doctor came to the room. He started by showing Christy and me the MRI results from several weeks ago, and he showed us the “desmoid” tumor.

His words were that it’s not malignant cancer, but we are going to treat it as if it were cancer. He explained that even though it is benign, the tumor is highly aggressive. It can grow into muscle, bone, or anything around it. Looking at the MRI you can see what looks like little fingers coming off of the tumor. Some of the fingers are very close to my spine. At this time, it is very important to stop the tumor from growing. Prior to our visit today, Dr. Nicholas consulted with a team of doctors concerning my case. With their help we have come up with a plan of attack. We will start with Radiation Therapy. I will go in for treatment five days a week for five weeks. The hope is that this treatment will stop the tumor from getting any bigger and to stop (or ease) the pain. If not, we will have to look in to chemo and/or surgery.

Some of you may be asking why the doctors aren’t just going in and cutting out the tumor. The problem with that is the tumor is in the muscle, and the muscle around the tumor would have to be removed in order to remove the tumor. Muscle doesn’t grow back. This could limit the mobility and flexibility of my arm. The other thing is the fingers I was talking about. They would have to be completely removed or the tumor would grow back. Some of the fingers are so close to my spine, and there is a chance more damage could be done. They are so complex that the doctor doesn’t feel comfortable jumping in to surgery just yet.

So I think Christy said it best when she said “today was very bittersweet.” It feels good to know what it is and that it’s benign, but I don’t feel like we’re out of the woods yet. This is the start of a long road. This may sound dumb, but I am looking at this like a climbing route. It’s going to be a long hard climb, but I know I have all of my family and friends holding the other end of my rope. So even when I fall, they are always there to catch me. There is not chance I won’t make it to the top.

Well what had happend was!!!!

I wanted to start a Blog to keep everyone up-to-date of what all was going on. My family is so large that it’s hard to keep up with who all knows what information. I plan on updating the information on here as we find out. Here is my story so far:

Ok… so it all started about 6 weeks ago when my shoulder started hurting. I didn’t really think much of it – just thought I had pulled something. This went on for about 4 weeks. Then about 2 weeks ago when I was getting my hair cut, as I got out of the chair, Christy and Amanda (the girl who cuts my hair) saw this “lump” sticking out of my upper back. They could see this thing through my shirt! So, still thinking this “thing” was a pulled muscle, off to the chiropractor I went. That’s where I found out I have “scoliosis”… yes folks, I said scoliosis. Well, I think it’s safe to say he was a little off.

So, by the next week I was at my PCP’s office. He thought it might be a lipoma, so he sends me to my surgeon. By the next week I’m in the surgeon’s office. He’s looking at this “thing” thinking I might have a torn muscle in my upper back. With this, the surgeon orders an MRI. Didn’t know I was claustrophobic until they put me in that little tube! Thought I was going to have to come out of that thing whether they wanted me to or not. I ended up being in that machine for an hour and 15 minutes. NOT something I look forward to having to do again. The MRI results are what showed a “desmoid tumor” growing in my back.

April 5^th is a day I will never forget. I really can’t put in to words how it feels when your doctor says the word “cancer” to you. It is a word that will cut right through you. It takes your breath away. This is a word that can make a strong man cry. It didn’t help that I got the phone call from the doctor as I was downtown with my family at the Museum of Discovery. It really took the wind out of everyone. I cried like a baby right there in that public place… couldn’t talk or tell anyone what was going on at first. The words just wouldn’t come out. When I could speak again, all I could say was “cancer”. It’s pretty much been a blur from this moment on. You could say I was in shock, just a little!

The next day UAMS called me to get my appointment set up. After waiting for a whole week, I was finally able to go to my appointment today. So here’s how today went:

When we checked in, the first nurse was SUPER friendly. It made it a lot easier to be sitting in a cancer institute. The resident doctor was the first person I talk to. He’s a very young doctor so I nicknamed him “Doogie Howser”. He and I started out just going over my symptoms. After than my actual cancer doctor came in and right away started talking to me about what was going on. He told me that he could see from the MRI that the tumor is under one muscle and between two other muscles. This is what is causing me so much pain on the left side of my upper back. He already wanted to do a biopsy. He and the nurse take me into another room to do what is called a “core needle biopsy”. All they do is take a hollow needle and kinda take a hunk out of the tumor. They did this about 6 times before they were done… didn’t really hurt at all during the procedure. It was shortly after when I felt like I had been punched in the back (here it is 9 hours later, and I still feel like someone punched me in the back). It only took about 15 minutes or so to do everything. After they were done, they took the samples down to the lab to make sure the samples were good enough to test. All the doctor could tell me for now is that the growth IS a tumor, but he is not sure what kind. I will find out more from the biopsy next Friday, April 20^th. I will also have a CT scan done during this appointment. From the pictures I Googled, the CT scan tube IS bigger than the MRI tube.

My hopes are that we will find out for sure what this thing is and what we need to do to get it out!