Jan 15, 2013 - 5:03 pm
Today I am officially in remission for 3 years after having stage 4 cancer in my maxillary sinus on the left side of my face and had 30 sessions of radiation after major surgery. I was just at the doctor a week ago and everything looks goand but I'm still struggling a lot with all the repercussions after my surgeries, radiation, and medications. I am still on Fetynal and oxycodone for my pain and nerve damage yet I still struggle a good deal with pain in my face and neck. I guess before I explain my issues I'll tell you what I all had done during treatments. I am a 26 year old female and cancer does not Erin in my family so I don't really have anyone yahoo can understand what I'm going through.
After I was diagnosed with my cancer I had my first surgery which they had to remove my maxillary sinus, a bone next to it, the roof of my mouth, the gum and teeth on the top left side, and a lymphnode. I was in the hospital for 5 days and had an extreme amount of pain that I could've never imagined. A month after my first surgery I had 30 sessions of radiation that we're around 30 minutes long each time on the lower left side of my face. Since I had so much removed out of my mouth I got an opterator(not sure how to spell it) or denture as some call it, and my jaw ended up locking that I couldn't even stick my finger in my mouth so I was put on a liquid diet since I wasn't able to fit any food in my mouth. Then one time at the doctor's office a doctor that I usually didn't see wanted me to take my denture out so she could look at how the hole was healing, so she literally forced my mouth open to the point I was screaming in pain. I finally got to leave the appointment, and my mouth and jaw were still in excruciating pain for the rest of the night. The day after my doctor appointment my left side of my face and jaw swelled up to the point that I looked like a chipmunk. The day after that I woke up with a small lump on the side of my neck underneath my jaw, and it hurt very badly that all I could so was put ice on my neck. During the week after the lump continued to grow and got to the size of a baseball. At this point the pain was unbearable but I was too afraid to go back to the other doctor so I made an appointment with my family doctor. The day before my appointment I was up with my collar bone wet and saw the lump was dripping a little bit. So I trit's to lightly dry it off and it ended up opening causing everything to literally pour out. So w when I went to my family doctor the lump had flattend out but was still draining. He told me it was an abscess and gave me antibiotics. Four weeks and 4 antibiotics later my neck was still in a lot of pain and continuously draining. I finally got referred to a new oncologist who specializes in head and neck cancer and was also an ENT. With in the first 5 minutes that he saw me he told he I was not going home and that he was admitting me to the hospital for the next five days. I had to stay on antibiotics through the IV the entire time and left the hospital with a PICC line in my arm which I had to continue the antibiotics 3x a day for 8 weeks. I ended up having a staff infection in my jaw, so 6 weeks afget leaving the hospital I had to get another surgery where my new doctor had to scrape the rest of the infection out and part of my jaw line that was destroyed by the infection. The doctor said there was a fracture in my jaw that ended up healing itself which causes the infection, I explained to him what the other doctor did and he said there was a good chance that she had fractured my jaw while forcing it open but there was no way to prove it because radiation has a slight chance of causing it as well.
Now after going through all this I delt with a great deal of pain on the whole left side of my face and neck and my tongue was exetremely raw from radiation. Now 3 years later my tongue is still extremely sensative that I can't not eat anything spicy to the point if you see any specs of pepper I can't eat it including chicken nuggets. I can't drink anything carbonated including soda or energy drinks because it burns my mouth. Instead of me losing my taste I ended up having it magnified that now a lot of foods I once loved I am unable to handle the pain they cause. I also have trouble swollowing foods pretty often as well. My jaw has opened up a little better that Im able to get food in now I just can't open it very wide and I have to eat everything in small bites or I can't fit it in. In reality though the food and eating have actually been the least of my problems.
I ended get getting severe depression after everything that I'm still dealing with 3 years later. I've seen numerous specialist and had very many tests to see what is also causing my other health problems. Now I'm still dealing with daily nausea even with my nausea medicine and a lot of stomach pains. I also get a lot of hot flashes very frequently that I'm almost always warm even in these winter months, and it gets so bad to the point that I sweat til Im soaked and sometimes causes my pain patches to fall off my back that the glue won't stick to my skin when it's damp. I have a horrible time sleeping at night and even when I do get enough sleep I'm almost always tired and fatigued that I barely have the energy to do anything I uses to love. I have a lot more sick days than days that I feel good and it's really starting to take a tole on my life. My depression continues to get worse due to the frustration of not feeling any better and the doctors have no idea how todoz anything since all the tests n blood work come back that nothing's wrong. Im so tired of doctors telling me "good news all your tests came back negative" which to me is not good news because it means they still don't know whats wrong.
Every thing has changed my life for the worse that I lost of a lot of friends from all this, and I lost almost all interests in activities I used to love doing. That I lost all interest in doing anything that I feel so sick hald the time that I don't want to leave my house or even leave my bed. All because I don't feel good that I just feel so sick on a daily basis. And my doctor can only tell me it takes time, and Im just like its been 3 years how much time does it take?!? I'm way to young to deal with all this and I want my life back. I've always been a very happy go lucky person who enjoyed life and was always with friends having fun. Now I really hate my life and want my oldself back. I tried all different things but nothing helps. If anyone else deals with some of the same issues can you please tell me if you were able to fix any of these problems. I would love to hear some insite from people dealing with similar issues, my cancer is a rare type to begin with and usually found in people over the age of 60, so I would love to hear some help from people a lot younger than that. Thank you very much and I apologize I wrote so much lol I truly need all the help I can get, I already tried all other options I've been given and I do not know what else to do.