Life with cancer
Back Again – Radio Ga-Ga
This time the cancer was toward the back and closer to the floor of the mouth. I refused surgery. So we did radiation instead – for 6 weeks, Monday thru Friday, 45 minutes a day. This was pure HELL for me! No other word for this – but hell. They made me a mould of my face, with a mouthpiece to fit inside my mouth, which did not fit. I would leave there feeling burnt to a crisp – I had no energy. It just took everything I had from me. I couldn’t eat and was loosing weight too fast. So they inserted a feeding tube but it ended up going into the stomach wall in which I ended up getting an infection in the stomach. I was so sick from this and the radiation, that I was hospitalized for this. I lived on Ensure® and Boost®. My tongue was on fire, also my cheeks and my throat. It hurt so bad to put anything in my mouth. I could only eat scrambled eggs and a lot of gravy – when I did eat that is. I haven't had salt since cancer. I haven't had a soda or potato chips either. I had loved chips! When I was through with the radiation treatment the first thing that I did was celebrate! I bought myself flowers and I cried with pure joy.
During this time my mouth hurt so bad that i couldn't brush my teeth. So the teeth that were once so pretty were just falling apart on me now. I found a toothpaste called Biotene, which helped me a lot. They also have a mouthwash and chewing gum. It is great stuff! I told my cancer doc about it, so he started having samples for his patients. My new dentist made me all kinds of things for my teeth to help me keep them, and it worked. I had trays for the top and the bottom and I put this stuff called GelKam inside them and wore them for as long as I could. He was the best dentist I have ever had and will ever have. I was his first patient with cancer. He has since retired his practice, which breaks my heart, for when we do find a great doctor you never want to loose them. My ENT doc has also been with me since day one with all this, he is great.
We lived in a small town outside of Las Vegas, so the trip in everyday was exhausting for me, so I stayed with my daughter, Jamie Lynn, throughout the week. Honey, Ric, would come and visit me there but had to go home for the pets. I would go home on the weekends with him. I cannot tell you the wear and tear this took on my family as well as myself. Illnesses like these do not just affect the person; it affects every single person that knows them. My daughter would cry and cry though she would try so hard for Moma not to see it . Honey, as well. I don't know what I would have done without them. My sister flew out from Oklahoma as well to take the load off of them for a week. My family lives back in Oklahoma and I have lived in Nevada since the first cancer.
Once I was done with radiation, I wanted my life back! I went back to work. I worked 20 hours a week, at first. I was tired, you bet, but I pushed on. I was soon at my 40 hours a week, still tired but I pushed on. I took care of my yard and my pool too. My husband, Ric, was there with me all the way. He held my hand, wiped my tears, made me laugh, sang to me, he did whatever he could to make me smile through all of this. I don't know what I would have done without him – that is the truth. Jamie and Shane have grown up now and we are on our own. So if it had not have been for my honey, Ric, I would have been all alone. And folks, that would have been awful! I couldn’t have done it, not completely alone.
CANCER didn’t wait 10 years till the next time. In 2003, as Ric and I were heading to Oklahoma (I am a country girl) for our annual family reunion, I found it! I knew it and I cried. Ric stopped the truck on a dime and he looked inside my mouth. We both knew right then and there that it was back; we cried again. I spent the next 9 days at the reunion watching and listening to every single thing – I feared that this would be my last.
We got back to Vegas and that same day Ric and I went to see my doctor. Doc knew it, and I knew it, but we didn't say anything. Biopsy again. Yup, it was carcinoma floor of the mouth. So doc sent us to California to see if I could have radiation implants. This is where they put 10-12 needles with little hoses coming from them into the tumor site, they shoot the radiation through them. I had ten. I had the same dosage of radiation as before but this time in 10 days! Plus they also used hyperthermia 4 times while I was there. This is like micro waving me from the outside in. That was so painful. It burnt so bad, the higher the level, they say, the better chance to kill the cancer. So I took the highest that I could stand. And a lot of tears. So here I am burnt again. No salivary glands left for sure this time. But did this work? No, instead the cancer moved into my jawbone!. All that pain for what? Now I had to have the very surgery that I had turned down 2 times before. I was devastated! I was exhausted! I was scared! Lord, I don't think I have ever cried so hard in this lifetime. When is it going to be over?
Surgery and Afterwards
So Feb. 2004, I had the very surgery that I had turned down twice, and this is where I am today. I had the surgery in California. They took the bone out of my left leg to rebuild my jawbone. They also taken a skin graft almost the length of my upper left leg to rebuild my neck area and the flap. I remember waking up and not being able to move my body except for my right arm, I was terrified – scared to death. There is never ever going to be a worse feeling for me than that very moment when I could not move. I had this trache (tracheotomy) in my neck; my head weighed a ton; I could not open my mouth; my leg was hurting and I had tubes running in and out of me. Oh, one more thing if this isn't enough, I cannot talk. So when they wanted me to try to sit up and I couldn't, they pulled me up! I couldn’t speak to tell them that it hurt. I felt a head rush with room spinning like a Ferris wheel. I was sweating from pure fear. I have never been nor will ever be a violent person, but right then and there, I wanted to slap that nurse! I have never known anything quite like this before. I remember praying at that very moment that they had better not ever do that to me ever again, I prayed, "Oh my lord, just take me right now, I want no part of this!"
I begged for something to write on. It was only hours later that they finally got me a pen and some paper and this was like the second or third day in intensive care. The night shift staff left a lot to be desired, they would leave me alone for hours on end – I was so scared. They would sit me on the bedpan and then leave. I was so helpless I couldn't even raise my body to get it out from underneath me. This is the worst feeling I have ever known. I have never been in this condition before. I couldn't roll on my side or sit up. It was terrible. Nothing more , nothing less, just terrible.
My husband had gone back to Las Vegas as duty called. When he returned, he was so angry with them for just leaving alone like that. He arranged for a room so that my father-in-law could come over, and he stayed with me for a week, which was great. He helped me so much.
I wasn’t about to lay in that bed and feel sorry for myself, so I would get up and walk myself everyday. There was a whole lot of discomfort there. But I got up every morning and washed my hair, which is still hard for me to do. Just bending my head over is hard; it is still heavy.
Upon leaving the hospital in California, Doc wouldn't release me with the trache to drive 5 hours in a car, so I went into a rehab facility for one month to work on my leg and my right arm. The nerves were cut on the right side of my neck where they removed the lymph nodes, I can hardly raise my arm. It is extremely hard to put on a blouse. So I can only hold my arm up about half of what I could before. They did remove the trache while I was in rehab. But I had a panic attack, so they put it back in. I had got a huge ball of mucus stuck and I couldn't breathe, so they put the trache back in. No one had told me what to do when it was out. It has been in since.
This is the third month after the surgery. I am getting better but it is at a very slow pace. My leg where the bone was removed and the graft, is very swollen. I had to get shoes in two different sizes. I am on liquid morphine, aspirin and Synthyroid®. I have to crush the pills. My thyroid is dead because of the radiation. They had to cut it in half just to put the trache in. It is goiter now. My ears hurt because of the swelling. I can hardly open my mouth, though I do try to. My speech and swallow tech's are on hold for now until some of this swelling does go down.
During my sickness, Honey had a heart attack at Christmas 1999. He is doing great, thank the Lord. His doctor said it was from stress and nerves. My daughter Jamie has got married to my wonderful son-in-law Jerry and they have 2 beautiful children, Jesse (5) and Julia (18m). My son Shane and his fiancée' have two boys, Kane (6) and Kaden (3.) They all try to come as much as they can; however, their lives are busy. It is very hard for the kids for this has happened 3 times in their young lives. They lost their real father 2 years ago, so I am all they have left. They have no grandparents left. They are so fearful, so afraid, as we all are. I don't know what to tell them anymore. They have seen me struggle with this disease; they have seen all the ups and the downs. I have been blessed to have a lot of people in my life; they play major parts in my life. I thank God that I have all the love that I have had. But the truth is I want more, I want it all!
I am now at home with my wonderful, loving husband. And I am still new into this. This is painful and disfiguring. Not near as bad as I thought it would be however. I still have hope for I am alive. I don’t know what the outcome will be. For now, I am fighting and trying to keep my head above the water and my feet on the ground. My father-in-law stays with me at nights when Ric works, just in case. I always say, this isn't my first rodeo with cancer, but I pray my last! I have had one hell of a ride; I just want it to end! I have so much love to give; I have so many things to do but I just don't want this "C" in my life anymore. It has found a home in me and evidently it likes it here but I am ready to move out!!
I pray that my story will help some of you. I hope that through all these words you have seen the pain but also the determination in one person to live, that is all I want: to live this life my parents gave to me, to love my wonderful husband, and to be here for my children and their children. Not much to ask, is it?