Up to date in 2004
Well Here It Is: September 2004
I really thought that I would be back on my feet by now. I am rather shocked that I am not. The last two times I had CANCER, it didn't take this long to "bounce back" so to speak. This time this has kicked my butt!!
I was nowhere near prepared for what I had done to my body and me. Mentally I thought I had all the if's, and's, but's and all my i's dotted and t's crossed. I didn't. I could have never in all my wildest dreams thought of all the pain, the suffering, the heartache, the disappointments, the tears, the fears, the sleepless nights, the never ending days, the loss of friends, the loss of self and all your dreams. This disease eats you alive. When you finally give in to the disgusting things they have to do to you just to stay alive, your mind is gone. You have gone into another place that you never knew existed. You don't hear anything after the first few minutes. You just go numb. This may sound crazy to you but unless you have been where I have been with this, you have no idea. Then to realize that you have done all this, for what, another day? Another day to do what--suffer, cry, hurt, breathe this is what I just went through all that HELL for---this --another day. WOW!! I wish I hadn't done it. I really thought that after the surgery I would go home to recover and that in about 6 months I would be back to normal, well as normal as I could be after all this. But no, here it is 7 months, and I still have a trache, a feeding tube and I cannot talk. So I have to ask myself at this point, did I get out of this what I wanted? What I expected? What I was told? The answer to these questions would be NO. No I did not. This is not at all what I thought "life" would be like. The one question that I asked was this, “will there be quality of life for me after this?”
That was the question I asked my team of doctors. I also said I want the truth, not lies. This is my life we are talking about here. I want to hold and tell my grandkids stories. I can hold them, so I guess you could say I got half of what I asked for. This neck dissection is one tough ordeal. It should never be taken lightly. You have a question - ask it. The time to talk is before the surgery, because after it you will not be able to talk. Not for a long, long time. I am now in speech therapy; though she said it would take a long time to regain the ability to talk it will be even harder for me to learn how to swallow again. The lips move fine, which is a plus for me she said. But since 80 percent of my tongue is gone, I cannot make all the sounds, you need the tongue for that. I saw the Doctor watching me struggle just to say the sentence " I am coming home". I wanted to die. Right then, right there. I was given 50 sentences to practice on every single day. I see the therapist once a week. Nothing is being done about the teeth yet.
October 2004. Today I am just days away from my 48th birthday. I honestly did not think I would be here so I never even planned on anything for it. No thought as to what I would like to do or as to a gift. HUM. I have been so busy trying to stay strong, busy, well and together that it has totally taken me by surprise that it is already here. This time last year I was in the hospital having the radiation implants put in. LORD I really thought I wouldn't even live to tell about that.
It angers me that I have been slapped again with this, when I have such a wonderful life. At least I am still here! A year ago right now I was at Long Beach Memorial Hospital praying to die. Thank GOD for unanswered prayers!
With my Ric right at my side, let me say this, I could not even imagine having to go through this alone, I just can't. For those that have to walk this alone, I just do not see how you could, I really don't. Poor Ric, he has had to be my support, and still work. He has never once made me feel like a burden. He tells me everyday how beautiful I am. There has always been so much LOVE between Ric and I. We are just so crazy about each other. Maybe it is because we both are at a time in our lives that we both know what we want out of life and out of a partner. I know this, I couldn't have asked for a better person to share my life with.
Lord look at what all I have done just to stay alive! Yet there I was praying for GOD to just end it all. You know we take LIFE for granted. I would have never thought 15 years ago that I would one day not be able to eat, to talk, to swallow, and to kiss. Who would ever think about such a thing? I mean really, I had NEVER even HEARD of ORAL CANCER! I certainly never thought twice about it until this happened to me. Up and until I was diagnosed with tongue cancer did I even know that there was such a thing. I knew about lung cancer, breast cancer, colon cancer you know all the ones that you hear about day in and day out. You hear about those all the time. Who ever heard of TONGUE CANCER/ORAL CANCER...NOT ME! Here I am now fighting the battle of my life. There is NO MORE taking LIFE for granted for this gal.
Before CANCER I had it all but I didn't know this at the time! Since CANCER, it has been PURE HELL! There is no way in this world to explain what ORAL CANCER does to your mind, your body and your life. No way. I am hoping that with MY STORY that I can give some insight to what ORAL CANCER is, what it can do, and how in the world we cope with it. I could either sit here and feel sorry for myself, LORD knows I have done that a million times, or get up and face the long road ahead of me. I chose to get up for I have way too much on my plate to fall apart now. Trust me, there is not a day going by that I don't have a million things to do just to make that day pass by without too much pain either emotionally, physically or mentally.
After 8 months, I finally got the trache out!! Oh happy day! Ric and I just hugged each other. This was a moment words cannot describe. I never knew what that would be like, how would I have known? Let me tell you this, it was 8 months of fear. 8 months of longing to talk, to be heard. 8 months of HELL. I have always been a vain person. Never left the house with a hair out of place. I always tried to look my best no matter what I was doing. So for me to have all this done to my face and neck was a HUGE deal to me. It would be for anyone though, vain or not. To look in the mirror and have to search for the person that you seen a million times is beyond hard.
So there we are in the office and the trache is out. I still have a hole in my neck!!! This is when it hits me, that even though the trache is out, I still have to wait for the hole in my neck to close. DAMM!! If I think about this for any length of time, I fall apart. This is why you can't do that. You have to stay focused. THIS ALL DEPENDS ON YOU. The doctors can only do so much. The rest is up to you. All the hard work is up to you.
So now I needed gauze and a ton of tape to close off hole. Doc put some sticky stuff to make the gauze stay in place. He then told me to change the dressing daily. The next day it was time to change the dressing. LORD! Let me tell you when I gently pulled that tape off, it came along with my skin! So now my neck that is already sore, is really hurting like HELL! Pieces of skin missing and blood all over. What to do now? It had to be covered up or closed off. HOWEVER there was no way anyone was going to put some tape back on that spot. NO, NO, NO WAY! So what i did was just saturate the bloody parts with ‘Neosporin’, then put some non stick gauze on top of it then i got a trache tie (that i had left over) and i tied it around the neck. Hey it worked. LOL. Look at me I am a nurse now. Who would have ever thought that!
Let us not forget that I am also still nursing my left leg. That is still not healed after the skin graft. The bottom part of the leg is finally started to close in just like they said it would. I am really pleased at how good the bottom looks. I wear black tights and you can't even tell that there is anything wrong with it. I wish that the Doctors could figure out why my legs are swelling though as I cannot wear any of my socks or my shoes. My socks leave a ring around my leg. You can press on my feet and it leaves a print. My Doctor ran a ultra sound on both legs to make sure there is no blockage--there is none. Something is wrong but they have no idea what. I was put on LASIK, a water pill but it didn't do anything for the swelling. For those of you who have never had your feet swell so big that it hurts to touch them, this is indeed an experience all by itself, now add all the other things I have going on, it is a lot. Yes I have elevated the feet in the air. They do go down some but not enough. I would have to lay in bed for days on end for them to go all the way down. Who could do that? I can't, I have to stay busy. I have taken my socks and stretched their tops out as far as I can so they won't cut off the circulation. I also bought some hose for circulation and the medical supply store. I have had to buy bigger sized shoes. If you knew me at all, SHOES are my passion. Lord I must own over 100 pair of shoes. LOL. I have so many shoes that I just love to wear and I can't...this upsets me to no end since I am a shoe freak!! Hey some people collect dolls, I love shoes. Now, I have only 3 pairs that I can wear. Which is killing me, LOL.
The feeding tube is doing ok. I really don't mind it now. . I had a friend on RDOC help me with it. He told me how to properly flush it. Since then I have had no problem at all with blockage. I had been having all kinds of trouble with it. It was always opening up and pouring all over my clothes. One day it made such a mess during my shopping that I had to leave the store and rush back home. The area around it is taking its time to heal as well. It all healed one time and I was so relieved. However it didn't last very long before it was all broken out again. It has turned out to be a never-ending battle as well, just like the skin graft. One doctor says to keep it covered; the other one says not to cover it. I can't decide which way to go!
I finally did start speech therapy. I had one therapist that didn't really work with me. She was more interested in what all I had done to me. She did more asking questions than teach me anything. I did stay with it for a month and in that month I only had 2 appointments. She had cancelled 2 of them herself. I had not been given anything to help me. I felt that I was wasting time. I spoke to my Doctor about this and he set me up with a new one. She is awesome! The very first session I was given more insight than the previous 4 weeks. I see her twice a week. One session is to learn to swallow again; the other is to learn to talk again. Ric tells me everyday how proud he is of me; he also thanks me daily for doing all this. He just cannot handle the thought of me not being here. He admits he is selfish, but honestly most of us are.
Shelley, my speech therapist, wanted me to do a barium swallow so that she could study my swallowing action. I had been terrified to have this done. However she went with me, she actually did the test herself. The last time I had this done, I didn't know a soul that was there. I did manage to do the swallow test. I was so scared, because I don't have enough tongue to do a thing with. I just knew I was going to choke to death. It is so scary because there is nothing there to make the fluids go where they are supposed to go. Plus if I choke, it is me the one choking; it is scary to choke with a hole in your throat.
Turns out I can swallow; however it comes back up when I do. Not all of it, but some; I am at a HIGH RISK though. The fluid does try to go into the airway, so I have to make sure I clear my throat so that it won't. This is not going to be any fun for me, DAMM!! You would think that somewhere down the road a girl could get a break! I still have so far to go folks, but you have no idea how far I have already come. I do! I have reduced my months and months of tears, pain, fears, constipation, headaches, insomnia, sleeping all the time, falling down, can't get up, pushing myself to the limit, not doing a thing at all, into these paragraphs. This has been one hell of a road for me. It would be one for anyone. CANCER is not a forgiving disease. It doesn't give you a day off. Oh no. Once you have it, you always will have it.
The swelling in my face is taking its time on going down; it has been a very long wait for me. But it is going down. I used to have patience like you would not believe. While you were yelling at the car in front of you to hurry up, that was me in that car. LOL. I was never in a hurry to do things. I just never was. I was always patient. Today I want things done right now! I want to feel better --right now. I want to eat---right now. A part of me though only says this because I HAVE waited so long. No one should have to wait this long. I have had no choice, I wasn't asked.
I have also had several biopsies performed since the surgery. That is always a fun thing. The scare, the fear. It is horrible! The wait is the worst. So far so good, though there is one place, it is too small YET, they say to do anything with. Yeah let's wait until it is so big that doing can ever be done! Honestly I don't think I will do any more treatments. I really feel that I am done with all this; I am so tired and worn. I don’t think I could do much more.
Yes I want to live. But is there enough left to fight the fight that I know it will take to beat this thing again. I have looked into the eyes of this thing 3 times now. I am not going to win! I have given it a run for it's money, but I have in no way won; I just think that it was not my time to go. I would love to have some years left. I have a wonderful husband that I adore. I have a wonderful marriage. I have a lot of love left to give and to show my family and friends. I am learning to take all this, a day at a time. How many of you can honestly say that you live one day at a time? Trust me this is not an easy thing to do. I know that I can honestly say that I have never done it before. I lived, I planned things, I was always living a day ahead! I am learning though and getting better at it.
Well this brings us up to date on things with me. It has been a long exhausting road. Some of you have been there with me since day one. Others I have been blessed to have met on my walk. I thank you for being there for Ric & I.
Thank you for listening and taking the time to read "MY STORY".