Denise Matteo's Journal
Written Apr 11, 2011 12:22pm
Here is the latest to my mother's continued battle with her surgeries. She has had 9 as of now. The most recent surgeries since her last update!The latest surgery was in October 2010 to close the hole in the soft pallate which has torn repeatedly since her initial first surgery in 2008. This hole was allowing food and drinks to go up her nose and come out of her nose. They tried multiple times to close it but it would never stay closed due to the damage that radiation caused. This surgery in Decemeber was a last and final attempt to close the hole. The surgery was a partial success -- a part of it remained closed, the other part did not.
The other surgery in December 2010, was to remove the staph infection from her face permanently. Doctors had to remove all the plates, screws, and other hardware in her right cheek (that they put in during her initital surgery). Then they took fat from her stomach and injected it into her face (where they removed the staph infection). This built her cheek back up a little so that it was more even with the left side. But it is still not completely normal. They also took at from her stomach to cover the hole in her face where the staph infection was. And the last surgery, in Decemeber 2010 as well.. but the end of December.... here they cut her gums in her upper jaw and inserted 6 implants into her mouth and did a . They did a bone graft in her jaw. Now... what is left (this is why she needs an additonal $8,000) is to re-cut the gum and expose the implant rods so that they can make the permanent dental prosthesis so that she will have and be able to eat like you and me. They also need to reconstruct her lip on the bad side (where they removed the tumor 2 year ago). Additionally, they need to FINISH her cheek that they never finished before. There is still a lump on her cheek and it is not even with the other side yet.
Written Jun 23, 2010 9:03am
How did I put one foot in front of the other after my diagnosis?
I remember the first set of news on 9-19 by Dr. Israel, which wasn't even the actual "yes you have stage 4 cancer" news yet. After Dr. Isreal took the 3-D CAT scan of my face, which was performed in his office. He came in to show me and explain what I was looking at. I couldn't believe what I was looking at. My body went limp, I began to shake and couldn't control the tears. What I was looking at was the right side of my face as complete black hole. The left side was normal and I could see the bones, teeth, cheek bone, etc. The right side was nothing but black. The tumor encompassed the right side of my face. He told me it was a tumor and now we had to wait a week to find out how bad. He took a biopsy and sent it out and requested immediate results. Now it's 9-29 and I went back for my results. He gave me the worst news anyone could here outside of finding out of a death of a loved one. He told me that it's stage 4 cancer and I had to go to a surgeon specializing only in this type of cancer of this area and he happened to have a friend who did just that in Jacksonville at Shands. He didn't know the details of the tumor because this wasn't an area he specialized in. He called him for me and made my appt. I sat in that chair for the longest 10 minutes of my life. Completely paralyzed, couldn't breath, nothing would move. He and his nurses gave me a hug and tried to comfort me but nothing would work. I was numb. I didn't want anyone to know until I went to Jax. to get the full details and then I could discuss it with my children and family and friends. So, I kept this to myself for another week. The longest week ever.
Oct. 6th my appointment at Shands. I went alone because I needed to hear the details and be able to wrap my head around all of the information and then figure out how to handle it all. My surgeon, Dr. Rui Fernandes , read me the details of the biopsy. He told me I have Stage 4 Squamous Cell Carcinoma of the Maxillofacial. It would mestasize to the brain area if I waited any longer and I will be given no other option but to go home and enjoy my remaining time. I had to opt for surgery. The tumor was the size of a baseball and had deteriorated my bones and gums and sinus cavity and my teeth were held on to the tumor and the tumor was actually holding up the right side of my face. He went on to explain what had to be done and how it would be done. I was more speechless this time then with Dr. Isreal. I was in shock, denial, disbelief and so scared. Of course I also had the typical question of "why me"??
He wanted an MRI, MRA, and PET SCAN all done immediately. Which they did. I had to return to meet with the Tumor Board (the group of head doctors who would also be in the operating room).
Facing death is inevitable but when the ominous is sudden, it’s a numbing interruption. A single mom, with two children, one in college, one in high school. I was petrified that I would die and never see them graduate, get married, have successful careers, have grandchildren. So, I decided to put my affairs in order the minute I would get home from Jacksonville and prepared myself mentally for the likelihood that I wouldn’t make it. I completely forgot about all of my other problems that I was dealing with, Everything pales in comparison when you are dealing with death.
Now I had the long 3 hour ride to compute all of this information and how was I going to present it to my children. I knew that I had to remain tough, strong, determined to fight this no matter how slim my chances of survival might be because I had/have two kids who need a mom and I need to be here for them. I don’t know how I drove home that day. I don’t remember driving. All that I could think about was dying and I knew I would and I refused to die. Getting up everyday knowing that life could be over was not only devastating but scary. I didn’t want to go to sleep for the fear of not waking up the next morning. I had to bury the fact that I might die and only think in the “present” and have the will to survive and that’s what I did everyday to keep myself from going into a state of depression and giving up. I refused to leave it all up to God and see what happens. I was going to fight this awful battle and I was going to win. I am alive today because my brilliant surgeon and God. My reason for surviving as long as I have is my children. I fought to live for them.
Written Jun 23, 2010 12:05am
I would like everyone to know my thoughts and fears and what I have been through ...please read my entry in the journal before you continue onto read "My Story"
After four grueling years of fighting with my drug and alcohol filled husband, losing my house to foreclosure and living in my car for a time, being cheated financially in the divorce that followed, not receiving child support payments that left me a hole so big I could not afford a rental apartment, I found out that I had Stage 4 cancer of the maxilla. The doctor told me that had I waited any longer, he would have been telling me to go home and enjoy the time I had left to live. It’s a miracle (on so many levels) that I am writing in this journal after all this and that dreaded diagnosis.
Facing death suddenly is a numbing interruption to any life, let alone one that has already been and continues to be chaotic. So when I first heard the diagnosis, I was speechless, scared, in disbelief, numb and shocked into silence. I cried hysterically and couldn't move from my chair in the doctor's office, and couldn't believe what was happening. I never felt so helpless or so alone in my life as I did that day. Once the shock wore off somewhat, I said to my doctor, “If it’s my time to go, I must go. I, however, I would not go without a fight. I have two children who need me. Saying goodbye to my kids the morning of my operation was painful. I held back the tears and fears that I had because I had to be strong for them because they were so scared of losing their mother.
I was so scared the morning of my operation. Not knowing the unknown is scary and going into a 14 hour surgery with a possibility of never waking up was scary. When I finally did wake up, not realizing it was 5 days after the operation. I was in a coma for 5 days and when I woke up I cried and couldn't believe that I survived and said, "OMG I made it!" "Thank you God." This is truly a miracle for me to be here and I am so blessed to be alive.
I had a feeding tube, treach, tubes everywhere, my veins had collapsed and I was black and blue all over my arms and hands because they had to put I.V. in every area that they could. All I cared about was seeing my kids. I was in so much pain but that didn't matter to me. I was alive and breathing. I was unable to speak and had to try to write what I wanted to say. I remember when the doctors had to change my treach and I was awake as they took the one out and replaced it and stitched me and all I could feel was the awful pain of the needle as it was being threaded into my skin. Or the time when the tube was removed from my leg and the pain as it was pulled out. I also remember the first time I was allowed to look in the mirror. I was scared to death to do so. I didn't know what to expect and when I looked and saw the staples in my neck and around my throat I cried and cried. After two weeks I was permitted to get out of bed only to sit in the chair. I was fed through the feeding tube in my mouth and my mouth was full of cuts and soars.
I came home with a walker and just as I thought I was beginning to feel better I had to have a PEG tube which was placed in my stomach(feeding tube) because I was unable to eat. The tube stayed in my stomach for over 6 months. I just didn't want to get up in the morning anymore. I would ask God to please take me in my sleep. This was a selfish request which I only asked a few times. I wanted to give up at times but I knew I had to keep fighting for my kids. I had my pity-parties at times and all I could do was cry until I didn't have any tears left.
I had to clean and flush out the PEG tube everyday and that is how I also fed myself. I also had a PICC line and a Mid line in my arms. I developed a blood infection and a staph infection and required a blood transfusion and I.V. antibiotic treatments for two weeks which were done as outpatient everyday at the hospital. I had a tube inserted in the corner of my eye and into my sinus so that I could have a tear duct because I no longer had one after my operation. Chemo/radiation reaked havic on me. I was deathly sick from it and went down to 88 lbs.
At times the stares from people and people whispering as they walk past me in a public place can be overwhelming and so hurtful and I say to myself; "Denise, it's ok because they don't understand." But after a while it's very discouraging to be out in public but I refuse to hide for the rest of my life.
I have had so many surgeries and my surgeries continue to this day; the financial and physical challenges continue to this day. But with the emotional support of so many, and with my innate stubbornness and refusal to go down without a fight, I am cancer free for now and still fighting. I refuse to let this desease win.