Better late than never...

I have been putting this off for over 2 weeks now. I really have not known what to say. It’s funny how fast you forget what life was like before. I feel like I have started to….. I don’t want to use the word accept because I will never accept this. I guess you could say "cope" with it. I feel like the radiation treatments were my whole life for 6 weeks and all we know for now is that the radiation did change the tumor in the fact that it now has a ring around it. The way the doctor explained it is the radiation kind of cooked the tumor. The good thing is that the radiation can still have effects on the tumor for 6 to 8 months. 

We also talked to the doctor about doing surgery. He told me that if we did try to take it out he would have to remove a lot of muscle and I would more than likely not have 100% use of my left arm. He also talked to me about what I did as my day to day work and because I do a lot of work with my arms out in front of me. He also thought there was a good chance I wouldn’t be able to do my job anymore.  He told me doing the surgery would be up to me. I did a lot of thinking about it and I don’t see me doing the surgery. I think the only way I would do it is if I was told it was life or death. 

From all my research I have found that I still have other options. I am already on Celebrex, but there are other drugs we can try that might have an effect on the tumor.  There is also chemotherapy. MD Anderson has had some luck with the desmoids reacting to what they call “low dose chemotherapy”. I am really up for trying anything to keep from losing the use of my arm.

This past week has been my first week back to work. It’s been a hard week. I have been in a lot of pain and have been sore and very tired every night when I get home.  I think when I go back to the doctor I am going to talk to him about going to the pain management center a UAMS to see if they can help me keep this under control and not be drugged up all the time. At this point I am up for trying anything. 

It’s hard to always stay positive through all this, and I have my ups and downs. When I get down I try to keep going back to “Tough times don’t last - tough people do.”

     

Half way there....

I have not done an update in a wile so I thought I would get everyone up to date on what has been going on. Last week when I saw my radiation doctor, he set me up to have a “half way through treatment” MRI. So I went in on Friday to have the MRI. When we got the results we found out that the tumor has gotten larger. This may not be as bad as it sounds. It could be from swelling. The radiation can cause inflammation and with that comes swelling. Because of the swelling, we had to change my treatment plan. They have to take the swelling into account in the treatment. After the treatment was changed, I had to go back to the CT machine and have the entire mapping done over. It was not as bad as the first time. I didn’t have to do another body mold or anything like that, just the mapping. Unfortunately, with the swelling has come more pain. The therapists think it is pushing on a nerve. So for now we are trying to add Aleve to my daily medication. If that doesn’t work my doctor is going to send me to the pain management clinic at UAMS.

As for sleep, I am getting all kinds of sleep. It is amazing how much the radiation drains your body. I feel like I am sleeping all the time. I have been missing work 2 to 3 days a week just because I just can’t get myself out of bed. They are still being very understanding if I can’t come. I still get paid just like if I were there. It has been a long 20 treatments, but only 10 more to go. I am so ready for them to be over with. I must say I will miss some of my therapists. They have been so nice, and I feel like I have made some friends. But that aside, I am still ready to be done with this. I will be going back to my cancer doctor on July 27^th. I will also have another MRI that day. It will have been 4 weeks since my last radiation treatment. So the hope is that all the swelling and inflammation will be gone. That way we can get a true look at what the radiation did. I know this post is not as long as some of the rest, but there is really no way to talk about the daily treatments. It’s the same thing every day at the same time.

I am counting down the days and staying strong. I know this will be over soon….           

The ups and downs....

I have my days when I feel really strong and know I will beat this. Then there are the days when I feel like this is never going to end.  I’m already sick of going to the radiation treatments. It’s hard to go in there every day. I try to look around at all the other people in the waiting room and tell myself “it could be worse.” I’m fortunate that, for the most part, I’m still “healthy.” From the look of me, I don’t think I really even look sick. It’s been nice that the nausea has gone away, and the meds the doctors gave me work great. The down side is that there is nothing they can do about the fatigue. The only way I have been able to explain the way it makes me feel is by comparing it to the way you feel after being out in the sun all day. But for me, I get that feeling after just five minutes of treatment. I’m still having a lot of pain; and from the look of this thing, it looks like it is getting bigger. I sure hope this radiation starts working and we can see a change in this tumor soon.

 I did find out the other day how important it is to take care of the markings on my back. Over the long weekend I was outside cooking on the grill. It was hot, and I got sweaty. That night in my sleep 3 of them came off. At the next treatment I was on the table for about 45 minutes as the technicians took x-rays and pictures to get all my markers back on. They had me laying there so long that my shoulder started hurting, and I had to get them to let me take a break. They were very nice about it and worked as fast as they could do get everything done. I saw the radiation oncologist Wednesday; and he said everything was looking good; no skin rash or any problems so far. I only see him once a week. He just looks at the mass to make sure the skin looks good, asks if I have any questions, and then lets me go.

I went back to the Cancer Institute today to meet with my cancer doctor. We really didn’t do anything. He took a look at my mass, and we talked about how we were going to keep surgery as a “last resort” option. He said it is so hard to treat this kind of tumor and that he wants to wait and see where there radiation gets us. So now the next appointment isn’t for two more months. We are going to wait until all the radiation treatments are done and inflammation from the radiation has subsided so that we can do a new MRI to see if the size of this thing has changed. I did find out from the doctor today that the reason it is looking bigger right now is from the inflammation from the radiation. I’m really not sure what we will do after the MRI. I guess I’ll just have to wait and cross that bridge when we get there. Christy told me this morning that this is just a “bump in the road.”

I met a girl online that has been dealing with the same cancer as I am dealing with. She has been dealing with hers for 9 years. She said something to me that has stuck with me and I have been trying to live by it. She said “Tough times don’t last - tough people do.” So I am trying to stay tough……

Didn't go as planned...

Just as the title says, today didn’t go quite as planned. When I got up this morning, I thought I would be going alone to my first radiation treatment. I was really glad when my old climbing partner, Alan, text me to find out what time I had to be at my appointment. It was nice to know that I didn’t have to be there by myself. When I got to my appointment, Christy had taken off work to surprise me by being there. I really have some great friends and a great wife.

When I was called in to the treatment room, I was taken into a large room with an automatic steel door. The walls were VERY thick. The machine takes up about half of the room and there is a table to lie on. The first thing the technicians had me do was take off my shirt and lie on the table so they could position me on the table the right way. After that, they left the room to do an x-ray. When they came back, they did some marking on my back then went out for another x-ray. After this, the nurses had to stop the treatment because they didn’t feel comfortable with my position on the table. The key to doing radiation therapy is that you have to be in the exact position every treatment session. With the close proximity of the tumor to my spine, the technicians want to make sure the high-doses of radiation don’t interfere with my spine. They didn’t feel that was possible with the way the CT people did the “mapping” for my treatment plan. With my doctor’s consent, they had me go back to the CT to get re-mapped.

So, I had to start the planning process all over again. We started out by doing a mold of the side of my head lying on the table so that my head will be in the same place every time. This thing looks like a small pillow that stinks really badly! They lay your head on it, and then it forms and hardens around your head. It even left an imprint of my ear in it. Then they gave me this thing that looks kind of like a bean bag. It’s a clear bag filled with white Styrofoam beads. I laid down on it then the technicians sucked all the air out of it. As they did this, the bag molded against my body and arms. Each day I’ll lay in this mold to make sure I’m in the same position during every treatment. All of this took almost 2 hours. They did the mold thing 4 times before it was right. By the time I got out of there, I was sore, and my back and arms were hurting.

Now we’re back to the waiting game. The doctor will have to look everything over to make a new treatment plan. They will call me with my new “first” appointment when everything is ready. I will let you all know more when I know something.

The After Glow

Today was the first day to meet with the radiation therapist.  The appointment went by really fast. It was a lot of paperwork. The doctor came in to have a look at the mass. He talked about what kind of plan we would have and said it would last for 5 to 6 weeks. I will have to be there every day except for weekends. I also found out that there will be some side effects. There is a chance that I will lose my hair. I have already told Christy if it starts to come out I’m just going to shave it all off. There will also be redness and feel like a sun burn. I won’t be able to be out in the sun or in extreme heat.  So after talking to the doctor one of the nurses came in to take me in to get a CT scan and do the mapping for the therapy. The guy kinda looked like a child molester; scary thing about that is the first thing he said when we got in the other room was take off your shirt. So joking aside they had me lay down on the table face down and he and the other female nurse positioned me into the position I will be in for every treatment. I am adding two pictures to this post to show everyone the large mass on my back. In the other picture you will be able to see where they drew all the lines on my back that is the mapping they did today.

After the mapping they did the CT scan. It only took about 5 minutes and I was out of there. It will take the doctor about 3 days to plan everything out on how my treatment will go, how long I will be in the machine, and how many weeks I will have treatment. So it will be next week before they call me to let me know when my treatments will start.

Mentally all of this has started to wear on me. I am at the beginning of all of this and have a long way to go. I have been very stressed and a little depressed this last week. I am trying really hard to stay positive but it’s hard to stay that way all the time. It would be nice if we could move all this along a little faster. Not have all the waiting from doctor appointment to doctor appointment. I am still not sleeping all that much. I am kinda surprised I am not jumping down people’s throats from lack of sleep.  

So I guess here in the next week or two I’ll be radioactive and begin to glow! 

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.