Calling All Opinions!

For those of you who have been anxiously awaiting :-) more news about my surgery, cancer, and recovery here it is. For those of you who don't know what I'm talking about, let me quickly recap (you can also check out my blogs from January '08 to get more info). In January I had surgery to remove a lump I had behind my left ear. From the surgery biopsy they discovered that it was cancer, but luckily they thought they got it all and the diagnosis was good (for cancer anyways). I was going to look into other possible options as soon as my facial nerve healed (the tumor was attached to my facial nerve and it got irritated when the doctors removed my tumor, resulting in the limited use of the left side of my face for about two months).

So, now that my face is basically back to normal (well, as normal as it can get :-D) I went to go see a radiologist to get his opinion on what I should do. My ENT doctor that did my surgery suggested just waiting to see if anything grows back, but he also suggested getting more info from a radiologists perspective. So that's what I did two weeks ago. To my complete frustration the radiologist recommended radiation. He said that my tumor was classified as intermediate-grade because 90% of the tumor was low-grade (no worries) but 10% of it was high-grade (lots of worries). If all of my tumor had been low-grade the radiologist would have recommended doing nothing, but because of that high-grade 10% he recommended radiation because the high-grade tumors are much more aggressive and are more apt to grow and spread. The other reason why he recommended radiation was because the margins around my tumor were really close. That means their was healthy tissue removed that was between me and the cancer (which is a very good thing), but it was really really close (.25 millimeters). So, the question remains is that too close, or did the doctor really get it all. My radiologist doesn't feel comfortable with how close my margins were, hence the radiation suggestion.

From what the radiologist told me, the only permanent side effects I would have from the radiation is a lack of saliva production on the left side of my mouth and a lack of sweat production behind my left ear because the radiation would basically destroy my sweat and saliva glands on that side. Putting it plainly, I would have some dry skin behind my ear and a dryer mouth that would just require drinking more water. I didn't think that seemed too bad. There are more short term side effects, though. The radiation would have to be done every day, Monday through Friday, for six weeks. I would feel tired, have mouth pain and possibly sores that would make it hard to eat (although I could lose weight ;-), my teeth could become damaged, my mouth would be dry and it might be hard to talk (hello! that's the worst thing ever for me! :-), and most likely I could lose some hair that was in the path of the radiation. Overall, though, my real worries aren't those as much as they are the rare side effects that COULD happen. I'm totally worried about the 'what-ifs', like damage to my inner ear (which my doctor said wouldn't happen, but a pamphlet I read said that it could happen, but very rarely does) and who knows what else could happen to me long term from the effects of radiation. If my only long term worries were lack of spit and dry skin I could handle that. I just don't want to fall into the 'rare' group that has to live with awful side effects for the rest of my life. I thought when I turned 27 this year that I was really old. But, considering the life I still have ahead of me I'm not old at all. I have so much to live for and I don't want side effects from radiation to affect my quality of life for the next who knows how many years. But, then again, I don't want the cancer to come back and have to have surgery again, or worse.

The overarching 'what-ifs' that are the hardest for me to deal with right now are: What if the doctor got all the cancer and I don't have anything to worry about? What if I do radiation unnecessarily and end up with side effects for the rest of my life? What if the cancer comes back and I have to have surgery again and possibly loose my facial nerve? What if I wait it out for now and the cancer comes back and spreads to my lymph nodes? What if I don't take the necessary precautions and this becomes a life or death situation??? I know that life is full of what-ifs and if we had all the answers agency wouldn't be necessary and there would be no point to this life. It's just hard having to make these kinds of decisions not knowing exactly what the outcome will be. I guess that's where faith comes it. This experience has definitely been a test of faith, but I know in the end I'll be stronger because of it.

Well, after some praying and planning I decided to start radiation a week from Monday, on the 19th. I'm freaking out because I just don't know what to expect as far as side effects go. I talked to a lady from the ward I grew up in who had almost exactly the same cancer that I have and she did radiation too. She told me that it wasn't bad at all and the side effects were totally manageable. But, another lady from my home ward said she had radiation when she was in college and now she has health problems that she believes stem from the radiation, including dizziness from her inner ear. But, you also have to take into consideration the advancement of radiation from thirty years ago until now. After talking to my mom and dad this morning about it, I'm thinking that I'm going to go to another ENT and radiologist up in SL to get a second opinion. I know that sounds like a 'duh', but honestly I've never dealt with anything like this before! Out of probably 150 people in my extended family there has only been one other relative that has had cancer, and she died when I was young. Cancer just doesn't run in my family, so I don't have a lot of experience and resources around me from family that have gone through it before. I am going to make an appointment today with the ENT up in SL, but I most likely won't get in before I'm scheduled to start radiation. So, I'm probably going to postpone that for now, until I get more information. This is all still so new to me. Honestly I'd just like to forget any of this ever happened and be in denial (which is kind of how I was coping with this up until I heard I'd need radiation). I'm dealing with things a day at a time, and it's definitely starting to sink in. It's still a very weird reality, but it's my reality and hopefully I'll learn something from the whole experience and be a better person for it.

SO, after that long speal, here's my request: PLEASE let me know what you think I should do. If you've had experience with cancer, or if you know of someone who went through radiation, or whatever, please let me know what you think. I honestly just don't know that many people who have had experience with this and I need all the help I can get. Or, if you just want to lend your support that would be great too :-). Oh, and just FYI, the type of cancer I have is called Mucoepidermoid Carcinoma (for those technical people out there, like JR :-).

Thanks for listening to all my rantings. It feels good to get all my thoughts down, even if some of them are a little crazy :-). Thanks for all of your help and prayers. I feel so blessed to get to associate with all of you. I look forward to hearing your opinions! Thanks again. I really do feel overwhelmed by all of your thoughts, prayers, love, and encouragement. I love you all!