Wednesday, September 1, 2010

My story~ Why I started this blog

I thought I should post my story on here so people understand why I am writing this blog.  This past May of 2010 I was diagnosed with Squamous cell carcinoma cancer of the base of the tongue and tonsils, and one lymph node.
I had NO symptoms to this cancer at all.  The way I found out I had it was a routine yearly check up to the gynecologist. She noticed a little lump on the side of my neck and asked if I had been sick recently, I said yes because I had a sinus infection the week before. She said,  "it's probably just a swollen lymph node from that, just watch it" Well, I watched it, and I touched it daily to make sure it was going away. It wasn't. Probably all the touching it made it tender, that's when I decided to start calling docs and getting things checked out further.
After a few different visits and different docs, I had  a fine needle biopsy done on the lymph node.
A few days later May 19th to be exact, my husband took the call that changed our lives forever. The doctor said, " I need you two to come in tomorrow and meet with me". I knew that was bad news.They would tell you good news over the phone, and he wanted both of us there. I was scared. Pretty much out of my mind!
Basically what happened from there was more scans, ct scan, and a PET scan. The PET scan shows where your cancer is in your body. They inject you with a sugar substance, and all the sugar accumulates to where the cancer is. After that I had my first surgery to remove the tonsils and take biopsies in the throat and mouth to see where the cancer started. He found the source, which was the base of the tongue.
After that we had to meet with Oncologist to decide what to do for treatment. This was all very scary to me, you basically are at the mercy of the doctors and have to do what they tell you to do because you don't know any better! At first I was told I would need 6 weeks of radiation and chemo by a radiation oncologist. I was sick to my stomach about this, especially after hearing all the side effects to the mouth from radiation.
Then my ENT told me surgery was an option instead. After praying and doing research on it, and much advice from friends, I decided to have my surgery done at Mayo clinic in Minnesota because they could do robotic trans oral surgery there. I had Dr. Moore, if you google him, he has a few videos of him talking about the surgery. It was kinda like meeting a movie star after watching him on YouTube. Mayo is a very interesting place to say the least! A very overwhelmingly huge place that made me want to get in my car and go back home. To me it was kinda like an airport, lines that long to register, so many people, so big, so NOT personal at all. It was interesting even going into the Ent department, when we were taken to our room, we saw Dr.Moore and his team walking into a different room. They "move" in a team of about 4 or 5 from room to room, wearing suits. Very strange! 
I had the surgery done on June 10th.  I'll tell you this is an experience I will never forget! I am used to having surgery at a smaller hospital, where things are more personalized and more "comfy".  We got there at 5:15 am. They take you to a very small room to get the gown on, get all your personal information, etc. They let my husband come with me there. But after that, they led me down a hall, and my husband had to leave me, and we walked the opposite way. We went down to what looked more like a basement to me then a hospital or surgery area! They had beds lined up against the wall, some with people in them already. It was like an assemble line, she put me in a bed, and people just started coming, asking questions, putting Iv's in , messing with me, and you can hear everything about the person next to me. Very weird environment. I think because it was so assemble line like, it made me feel like a number, just waiting in line for my surgery. I was scared, very anxious and everyone that came to talk to me could see it.  They finally gave me some medication to help me calm down and the rest is history, I remember going in the room and that's about it.
I don't really remember the recovery room part of it, but remember getting to my room, that I had to share with someone else by the way, and getting very sick and throwing up. The room was small and the nurse I had was less then sympathetic to a big baby like myself! I had a feeding tube and was throwing up and my tongue and throat were so swollen I couldn't swallow my own spit, it was, well, awful.
Which began a month of nothing by mouth, not even brushing my teeth. I was not even allowed to brush my teeth because they didn't want anything going down my throat. At first they told me the feeding tube would be in for 10 days. But after the first follow up visit, they did a swallow test and I wasn't ready. I couldn't swallow yet. So I ended up with the tube for a month. This was a pretty awful experience for me, not being able to even take a drink of water for a month. After that was over and the next swallow test I was able to swallow, (not without choking though) they let me have the tube out. Felt great to get that thing out, but also scary because I couldn't swallow without choking. It took me hours to drink one nutritional shake. Hours!
So of course I was losing weight, and the doctors didn't like that. They got on my case about drinking more. Hello? How am I supposed to drink more? The stuff made my stomach sick, and it took me forever to get it down!
It took me a week or so to realize that I could chug down more then one swallow, that I wouldn't choke until I stopped drinking. Then I was able to get them down a bit faster.
The road has been slow. After two months I was able to start eating real food again. My tongue didn't work right and it was very hard to eat. I still have a hard time getting some foods down, I basically have had to relearn how to use my tongue, and my tongue and throat muscles don't work very good yet to push the food down my throat. It's all a very slow process, but I am thankful that I can eat food again!!
I didn't have to have chemo, and the radiation was left up to me because I was right on the border between needing it and not needing it. After much prayer we decided not to do it because the side effects of radiation to the mouth are many and can last forever not just for the few months you are doing the radiation.
Let's just say, this cancer has been a serious wake up call to me.  I have learned a lot already by reading books and seeing a  MD who is also a holistic/nutritionist.
I feel like I need to share what I am learning with others, because honestly, I wish I had known years ago what I know now! So I think, if I can make others aware, and share everything I learn, maybe I can save someone else from going through what I have been through in the last 3 months.
I am not a nutritionist, I am new at all this! I am just going to share what I'm learning as I go along this journey!!  I hope that by reading this, others will take charge of their health, before it's too late.
Today I turned 40 and I couldn't be more thankful to be alive!!  

1 comment:

  1. Thanks so much for sharing Amy! I look forward to reading your blog and learning from you!

    Shelley from SKB